Wednesday, September 30, 2020


 I was working on something that took all my attention and the material I was working with was quite grim. It was important work, I knew, but no matter how hard I tried the subject matter started to draw me down. This has happened to me often in my line of work, there aren't a lot of happy stories to be told from the lives of people who suffered institutionalized abuse and personal assault. I work towards a goal that's worthy but sometimes the muck of the present is difficult to get through.

And then.

And then.

One word brought back a memory and everything felt lighter, I stopped closed my eyes, and remembered.

I was having my birthday party in Ottawa with Ruby and Sadie and their parents. Sadies was a wee babe and Ruby was about 4. She had come with us as we picked up the cake, I had requested a carrot cake because I like carrot cake and somehow, in my mind, it's healthy. 

Rubes had not had carrot cake before and she was looking forward to dinner and gifts to get over with so she could plow into the cake. When we were all fed, when wrapping paper had been cleaned up, out came the cake. It was my birthday but it was clear she was getting the first slice. It was placed in front of her, she grabbed her fork and dug in.

One bite.

That's all it took.

Then she leveled her gaze at me and said: Next time let the kid pick the cake.

Oh gosh, how we laughed.

That was it. A random happy memory switched on by something I was reading, lit the moment, and lifted the experience of the work.

Yes, there is pain in the world, but there is joy too.

In these days we can forget that so easily. 

Tuesday, September 29, 2020

Gnawing Loneliness

 We went to the gym for the first time in a long time today. We visited a few days ago to determine if we'd feel safe going back there. The change was enormous and their plan for safety really sound. So we went. Before the machines were close to each other and now they are spread far apart and even with people in it, it feels empty.

I got on the cable machine and started my routine. I'm rusty at it and missed several things but that's not a worry of mine. It was while doing this that I began to feel this gnawing loneliness and isolation. This struck me as odd because I didn't go to the gym to make friends, I had gone to get fit and that's why I was back again. It was the physical me that needed working out, not the social me.

But as the feeling grew stronger, I realized that I missed the general bonhomie and the interaction with casual strangers. The bits of encouragement. The quick conversations about the workout. The advice given freely in a friendly manner. There were never bunches of this, just evenly spread through the gym that I knew, as I became known there.

This was a different experience. With people far away, conversations were improbable if not impossible. With the workout areas so spread out, it was easy to feel invisible there. I got a good workout. I had lost strength in some routines and gained it in others. Physically my needs were met. But oh my gosh, my social needs, which I didn't even know I needed, were not.

The pandemic is hurting us in ways we don't even know.

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) 

Monday, September 21, 2020


 When we finished shopping in the grocery store we headed for the accessible lane, which had been empty until, at the last second an elderly woman stepped into the checkout lane. We'd seen her on entry and she had a medical note from her doctor that her breathing disallowed the use of a mask. She was allowed in. For the next half hour or so we saw her in the store.

She had a scary, angry face. The kind of face that made people get out of her way without her asking. I know that her face tells no story. Gives no information. I have a resting angry face, so I know that people read into my face feelings that I do not have and begin apologizing for things that did not annoy me. It's fun sometimes and annoying at others.

She only had three or four items on the belt. One of which was a frozen chocolate cake. The kind that comes in clear plastic sealed by pressing the top things (there must be a word for them, but for now, things will do) into the bottom things (see parenthesis before). One the cake was checked she picked it up to put it in a bag she'd brought to the store. Because of the shape of it, it kept getting caught on the edges of the bag and she had to work it in.

We had to wait for her to manage this, but hell it's the accessible aisle, just freaking wait. And I didn't mind at all because something happened that warmed my heart. She didn't move easily, she had difficulty with the use of her hands, it looked like life was a bit of a struggle for her, like it is for me. 


When she picked up the cake to put it in her bag she smiled.

A lovely beautiful smile. The scary face disappeared and she looked genuinely happy. I could see her anticipate getting home and having cake. I don't think many scary people love cake that much.

I think many scary people need more cake.

I really do.

Sunday, September 20, 2020

A Tale of Two Boys

 We went over to the mall this afternoon after Joe finished his volunteering at the food-bank with the goal of my going on a walk for the second time. We had the walker, the wheelchair, and my will, and that I figured was enough. After the walk, Joe took the walker back to the car and I rolled around the mall. I was picking up speed as I rounded the corner. I knew that I was to meet Joe at the elevator and I didn't want to keep him waiting.

There was a line-up of teenagers waiting to gain access to one of the popular stores there. Two young men, boys really, were standing at the end of the line. One of them said to the other, loud enough for me to hear, "Hey, look at the fat guy in the wheelchair!" Instantly the other replied, "Ah, don't be an asshole for your whole fucking life, eh, he's pushing himself minding his own business and ..." at that point I was out of range and could no longer hear.

I was really buoyed up by the words of the second guy. He had no reason to stand up for me, he didn't know me. Well no reason but standing up for me was the right thing to do. Who knows if he will suffer social consequences for being a kind kid, but if so, I think he will survive. Kindness is always attractive.

At first I thought, what a well brought up young man. And then I thought, wait a minute, I don't want to diminish his actions by crediting other people. His parents may have taught him kindness, but he had to choose to be kind. His parents may have been cruel, and he knew how to actively repel cruelty. I don't know. 

But he took action.

Speaking up is hard.

Not having spoken up is harder.

Good on you kid.

Saturday, September 19, 2020

Celebrating the End of DSP Recognition Week

 To Be a Direct Support Professional

It’s a job


But it’s a commitment too

A commitment to relationship

A commitment to care

A commitment to listen

It’s a job


But it’s a promise too

A promise to be kind

A promise to be gentle

A promise to be genuine

It’s a job


But it’s a vow too

A vow to never hurt

A vow to never humiliate

A vow to never dehumanize

It’s a job


But it’s also

An amazing way

To live a life of service

And experience a life of purpose.

Friday, September 18, 2020

Alien Me

 What just happened!!

I just woke up and it was a few minutes past 9. That's 9AM! I don't sleep in, ever. I get up at somewhere between 5 and 6 in the morning, no alarm, just my body clock. I usually got ready for work and got to work somewhere around 7:30AM. Lately I've been using that time, while Joe slept, to exercise and catch up on emails.

But this morning it was 9AM.

I've lost so much of the day!

But, and this is weird, I feel very rested.

Like I'd had a good sleep.


Is this what retirement feels like?

Is this what owning time feels like?

Years ago I did a consultation at a group home for teenagers, an idea that is shocking, and was met by staff who were universally furious that the girls who lived there were hard to get up on weekend mornings. They had chores to do, they had routines to follow, and they were LAZY. I listened and suggested that they simply leave them alone, adjust the weekend schedule to be more flexible and let them get up on their own time.You'd thought I was an alien by the way they reacted.


I actually had to go and write the recommendations down, get them signed by a psychologist, train the supervisor and train the staff in a weekend routine that let those kids sleep in.

I did all that as someone who never slept in, ever.

And now I think of them, and I get it!

Feels great to sleep and get up when you wake up.

No prodding.

No threats.

No nothing at all.

9AM! Maybe I am turning into an alien as "Retired Dave" seems to be taken over.

Thursday, September 17, 2020

Stairways in Unexpected Places

I had an appointment to see a specialist down in Toronto today. I'm always full of anxiety when I have to do this, it involves whole new people who I don't really have time to establish trust with. Walk in, drop trou, and let strangers examine my bare legs. I had fought against this consultation, figuring I didn't really need it because everything is pretty much under control and improving. But I was surrounded by a wall of insistence and simply gave up the fight.

So we arrived and the traffic around the hospital was horrible, just horrible. We finally found the address of the clinic and, to our shock, found that there was no sign of an accessible way in. Figuring that there must be (mustn't there?), we parked and Joe got out to scope out the situation. He returned saying that the entrance was only available to those who could climb stairs and we were to go back to the hospital and work our way in from there.

We had parked across, directly across, from the clinic. We had plopped down our 25$ payment. And now we were a long way from the accessible entrance. I double-checked our information from them. It was very detailed about what I needed to bring, what time I needed to be there, where I should park, it was all there. All but information about accessibility and the accessible entrance. This is a HOSPITAL.

I wheeled myself down the sidewalk, crossed over the street, and made my way to the entrance. The place was packed, everyone wore masks of course but, wow, there were a lot of people there. We had to do the COVID lightning round and then were sent to the information booth to find out how to get to the clinic.

Once there we realized that our leaving early paid off because, with all the bother about entrances and such, we were just on time. I was taken to a room by a nurse who was both all business and kind at the same time (as I keep insisting is possible). I undressed and put on a housecoat that I brought from home and got on the bed.

When she came back, I reported that I had a complaint.

I told her and she realized immediately that there was a problem. She told me what she was going to do about it. She ensured me she would effect change.

Then the flood of professionals came in and the consultation began.

Wednesday, September 16, 2020

Dirty (yawn) Dancing

 Last weekend we went to a drive-in movie, we haven't done that for years. We went because it was a fundraiser for Vita, and because Ruby and Sadie love the movie. What was the movie? It was Dirty Dancing. Neither Joe or I had never seen it eschewing as we do heterosexual romantic movies. Of course we've seen some, but this one was not one that we were interested in.

The movie started and I want to tell you some thoughts that ran through my mind.

1) Oh, my gosh, this is white.

2) None of the facilities were accessible.

3) A hotel full of waiters and not one of them gay.

4) A girl goes from wanting to save the world to wanting to save her man.

5) Does Patrick Swayze own a shirt?

I could think all this because I was essentially bored.

But when the lights went up, Ruby and Sadie were asking if we enjoyed going to the movie, the phraseology of the question gave us both an out, I would discover later that Joe had similar wandering thought, so we said we'd had a great time. And we did. Seeing the girls really enjoy a movie and sing along with the songs. Being out all together, feeling like family, acting like friends, wouldn't have missed it.

But we didn't say a think about what we really thought about the movie.

You know why? And this is a lesson learned over a lifetime and serves us well now.

You don't shit on someone's joy.

Tuesday, September 15, 2020

Safe Spaces

This has been bothering me for a couple of days, so I thought I'd write about it.

We went to the VanGogh exhibit on Friday and before we entered we were given some rules. We were told that we'd see circles on the floor and we were allowed to go into a circle together and advance only as other circles emptied. It was well thought out and executed and what's even better, people followed through with social distancing in this way.

Joe and I got to a circle where we were happy to stay for the whole exhibit, which happens all around you, and stayed there. People were popping into and out of circles trying to get a better view and enjoying doing so. Soon another couple came and stood in a circle just in front and to the side of us.

After a few minutes she leaned back into his chest and he folded his arms around her. It was a lovely gesture.

And there Joe and I stood, beside each other, together approaching 55 years. I wanted to feel his hand on my shoulder or to slip my hand in his.

But I couldn't.

I don't feel safe anywhere were straight people predominate. Where straight people define as their own. Now I'm not suggesting a squad of Van Gogh lovers would race us down and attack us. But I'm also suggesting that it's not outside the realm of possibility.

A few miles north of where we live, two men, walking along a lakeside path, were attacked for holding hands. Beaten.

Throughout all of our lives, I've never felt completely safe being completely gay outside my home or a gay bar or club.

So I sit, wishing Joe knew how I felt at that moment.

And knowing that merely telling him was not good enough.

Monday, September 14, 2020

Let It Be / Pay Attention

 We had finished grocery shopping and I told Joe that I was going to head over to the big box store at the other side of the strip mall. To do this I had to negotiate 7 or 9 really difficult curb cuts. The went from the road right up to the wall, so anyone in a wheelchair crossing them would have to push hard and fast to get across, using primarily one are to push and the other arm to hold the chair straight. After a couple, I had gotten the hang of it and was making pretty good time. My goal has always been outdoor pushing so this was a good chance to do that.

About a third of the way along there were a bunch of kids with skateboards, all young and at the age where nothing matches, their arms too long, their height not fully kicked in, the feet, huge. As I pushed some of them noticed me. One after another when rolling by asked if I wanted help. I'd say no, they'd say cool. This happened over and over again, never being asked twice by the same kid.

I was fading when Joe came up to me. He'd loaded the car with groceries and driven over to meet me. I made it in and relaxed a bit. I was not the sole person in a wheelchair in the place. A man, about my age, with an intellectual and physical disability, was there too. His staff was stopped talking to someone on the phone. He. sitting in an elaborate wheelchair was reaching over to grab a bag of chips. This was hard for him and he was working. Getting his body in position, reaching, his fingers came so close, I knew he was going to grab it. 

Then the staff noticed what he was doing and grabbed the chips and threw them in the cart as he threw himself back in his chair, defeated.

Goals are what are set around a table with professionals.

But some people have their own 'in the moment' goals. His was to get the chips and put them in his cart. Mine was to make it unassisted from one side of the strip mall to the other. I got offered help, my refusal was listened to. This fellow had help thrust upon him which made him a being incapable of doing what he's capable of. His goal ignored, his success denied.

We are not masters.

We are servants.

So we should ensure that we do.

What we are asked to do.


We should not do.

What isn't necessary to do.

Sunday, September 13, 2020

Well Groomed Young Man

 We were in a line-up. We stood behind the red line which designated the appropriate social distance. In front of us were a mom and her son, a teen with Downs Syndrome. They were right in front of us and they were speaking loudly so we could hear. It began when Mom grabbed him, he had been standing in a reverie so he was startled, then she pulled his head down and gave him a big old kiss. She said he looked like he needed it.

He said, "Don't mom, I don't' like it."

She said, "Oh yes you do, and grabbed him again, he resisted but she was forceful and she kissed him again calling him her little boy."

He said, "Mom Stop! I told you before not to do that."

She said, "You can't tell a mother not to love her baby."

He said, "I'm not a baby, I'm a man."

She grabbed at him again, laughing, he fell backwards into the wall trying to avoid the coming kiss. He failed.

That was it for him he just gave in. He was deflated.

I leaned forward in my wheelchair and said to the mom, "no means no." I thought that was the shortest way to get to her to make her stop to think.

Wrong move.

She said, "You don't get to tell me how to parent my son. And it doesn't like you ever said 'no' to cake, think about yourself first and leave me alone."

Her son was watching her and seeing her anger wash over me.

He seemed relieved to be left alone for that period of time. He mouthed the words, "Thank you," to me, and then they were called into the store.

People with disabilities are over-compliant.

People with disabilities are statistically more likely to be abused.

Her son was setting boundaries, she was breaking them.

She was preparing him to be a victim.

Sometimes it isn't just the perpetrator that grooms victims 

Saturday, September 12, 2020

Having Time Is a Privilege

 This is a story about going poo.

I am so unsurprised that disabled people can talk about toilets and needing toilets and using toilets with such unabashed abandon. I think it's because, in a sense, they rule our lives, our bodily functions need a place to function. It's like what would happen to you if you went to a bar and discovered that both toilets had broken down. Besides touching yourself in a manner of a 5-year-old, you'd talk about toilets.

Fridays Joe does volunteer work at the Food Bank, work he loves, and on top of that he really likes all the people there and enjoys getting out of the house - and I'm sure he also enjoys a wee break from me. We recognized after I fell on Friday and was on the floor for over two hours before he came home and found me covered in sweat and blood. So, we got me a phone.

What I usually do, note the word usually, is put the phone in one of the pockets of the walker and take it with me wherever I go. Well, this morning I was up and fully dressed by 6:30 because when Joe comes home we are rushing down to see the Van Gogh exhibit. I had to go poo so I got up and grabbed my walker and forgot to take the phone.

When I had done my business I pulled my pants up to my knees and suddenly felt something scraping my toes. I looked down and found that my suspenders (braces) had lodged themselves between my big toe and the one next to it. I tried and I tried and I tried getting it out. I simply couldn't do it. I had no phone to call for help and even if I did, this seemed like a silly reason to call. Finally, I decided to unclip my suspender (brace) and let it fall to the floor. I reasoned I could stand up and then pull the suspender free.

That did work, it flew behind my food and then I put my foot back down my heal right on the head of the suspender (brace) and pain shot through me and I fell against the wall and began sliding down towards the floor. The idea of laying for hours in front of a toilet that's just been used was beyond me. So I grabbed out at the bar, ceiling to floor, that we have for a grab bar and it held my weight and suddenly I was standing again. I made it back to my chair, completely exhausted and overwhelmed. My mind was full of:

1) fear of falling

2) a worry of what-ifs

3) loathing of dependency

4) relief that I was done

That's a lot.

I'm reminded here about people with intellectual disabilities who have days or situations when their mind thusly fills. Frustration upon frustration, disappoint upon disappointment, everyone experiences that, but people with intellectual disabilities might experience that a little bit more in ways that are invisible or unthinkable to others. Many of you never have to worry about pooing, about mobility, about falling, and hospitalization. I'm also reminded that they, unlike myself, have staff whose job it seems at times is to push and prod them, we call it encouragement, they might experience it as cruelty. How many times have all of us screamed, "I'VE HAD ENOUGH, LEAVE ME ALONE, I NEED A SECOND TO GATHER MYSELF". We all know that there are times when being left alone is the most powerful gift we can give someone.

Once my mind had settled I was able to move on. I put my phone in my walker, I came here to write this blog and my day moves ahead. Because I gave myself the time I needed to pull myself together.

Time that belongs to me.

Friday, September 11, 2020

Suddenly Karen

 It was like I was suddenly Karen.

We had gone to a patio to have an iced tea. We'd spotted a table and I rushed towards it, Joe didn't follow because I didn't need him to. He went to get the tea. A table was set up in the corner and I pulled out one of the chairs and pulled my knees under the table. Seconds later the door that was beside me slammed open smashing my wheelchair and startling the hell out of me. I said, "You smashed my chair." In these situations, I worry first about my chair and then about everything else.

She started saying that the doorway couldn't be blocked. Now several things. In the days of COVID there are lots and lots of closed and locked doors. The table was set up by the staff and before I moved the chair it was directly in front of the door. Finally, I'm highly visible and it was a completely glass door. She apologized profusely, way too much, saying she didn't mean to bother me. She didn't help me to move the table, move the chairs and create space in front of the door that she had slid out of.

I kept saying, because she kept talking, "I'm not bothered, I was started and, you smashed my chair."

Then the man at the next table turned and said with huge hostility, "Well, you were sitting in front of a door, what the fuck did you expect?"

Who is this man, why is he in the conversation, and what's up with the hostility?

I said, knowing he had seen me arrive, "The table was set up in front of the door, I just moved a chair to get in."

He told me that I was being fucking rude.

I hadn't sworn, I hadn't gotten angry, and I hadn't yelled at her except the first time when my chair was struck, with force, by the door. Now other people were weighing in. I'd sat in front of the door. If my wheelchair had been broken it would have been my fault. I felt all this weight of their anger and I couldn't understand why this had gotten out of control

All during this, she kept apologizing to me. I wanted her to just stop, it was overkill. I told her it was okay, but she wouldn't stop.

I don't think I was a person then, I was simply someone, not quite human, where they could dump their frustrations. I think difference is a magnet for socially inappropriate behaviour. I think that's why things could get dangerous for us out there.

Then, Joe arrives with iced tea. He looks around at all the players and his presence seems to silence them. Joe looked at me and said, "I'm guessing you are glad to be blogging again soon huh?

Thursday, September 10, 2020

Careful Now

 Be really careful about how you read this.

Be really careful about how you respond to me.

I'm even uncomfortable writing this because I fear how people will react. But I want to be transparent about my life and since I don't take pictures, this blog is my personal record of my life.



It was my first day of retirement and it got off to a bad start. We'd stayed up past midnight watching 'Away' on Netflix and just before going to bed our smoke detector went off. Oh. My. Does that make a noise! Joe got out a stepstool and gingerly got up on it with me shrieking "Good God Don't Fall'. He was unable to do anything. The thing beeped in a pattern, one, short pause, three, longer pause, one, then a fairly long pause. We went to bed after shutting the bedroom door to block out as much sound as possible. We both had shitty sleeps.

Once up, we got the thing fixed and then faced the day. It was my first day of retirement and I had something special planned. I've been seeing a nurse every week and she's been teaching Joe how to do a treatment for my legs that has made me more stable standing and less of a risk when using the walker around the house. Three weeks ago, I started some leg and butt exercises that were aimed at getting me up and moving a bit more with my legs, not my wheels.

I had set it up in my mind that today I would go for a walk in the mall. I would roll in with my chair, Joe would carry in the walker, and then we'd go to a place in one of the very large stores where there are usually very few people. Sitting at my desk after that horrible sleep, I almost gave up the idea. But I asked Joe if he could fix my legs and if he was up to going out. I hadn't told him my plan, that was to be a bit of a surprise. He didn't understand why I wanted my walker brought along but he was tired and asked no questions.

We got to the area and there were more people there than I expected and again I almost gave up. I don't like to be watched or stared at. But, I locked my chair and stood up. I took the walker and instructed Joe to follow quickly behind me hoping if I fell, I'd fall back into the chair. I looked up, set a goal, and headed towards it. My walk was slow but my gait was steady, I made it to my goal, turned around, and walked back. About halfway to the start point, I flagged. I had to stop several times to catch my breath and relight the pilot light on my determination. I made it.

Just before I sat down a group of three very young teens bolted over to that area playing some sort of catch and release game. They came to a stop when they saw me. I could see their eyes take in the whole scene. Me, a huge man, with a walker, and a wheelchair just behind me. They started laughing but slowly the laughter died, it was like they took a second to realize that this was a sacred moment for me and the wind left them, then they left me alone.

Why am I worried how you will read this and how you will respond to it.

Decades ago I worked in a school with kids who had physical, not intellectual, disabilities. One of them was a wheelchair user and after one summer he came back walking with the use of crutches. I walked with him to his first class and when he went in everyone applauded and cheered him.

That made me uncomfortable.

My walk today doesn't mean anything really.

It doesn't mean that for those few minutes when I was up and walking that my status had changed, I wasn't more worthy, I wasn't fundamentally changed.

But walking has become, to many, the deal-breaker. "I survived a terrible accident and I was left 'confined' to a wheelchair." "I can't imagine not being able to walk."

Walking is like the very limit of human imagination - there is nothing of value beyond it.

What I did today was a different type of exercise. In fact, I was slow and my steps were labourious - my movement in a wheelchair are quick and graceful in comparison.

So, please.

Don't cheer.

Wednesday, September 09, 2020

The Wave

 We were out for Mike's birthday, sitting on a patio, in the middle of a pandemic. The girls were with us because our car is too small to have 4 people in the back seat. Mike and his girlfriend Joss were following in a cab. We arrived at the restaurant first and were seated on the patio, with goodly distance from others there. We sat Mike and Joss arrive and hop out of the cab on the opposite side of the street. I waved to get their attention.

In truth, I was thinking that I just wanted this to get over with and then go home. I'd had a busy day in the office, there was so much to do. I'd had an emotional day in the office as well, we had driven down right after my virtual retirement party and I'd seen some people that I didn't realize how much I needed to see them. So I was drained. The prospect of a very late lunch or a very early dinner with all the noise that accompanies birthday parties was daunting.

As I was waving to Mike, an elderly homeless man was going by. He was dressed in a sweat suit and never had the name been more appropriate. He caught my wave out of the corner of his eye. A wary smile pulled at his mouth and he turned towards me. I saw him and didn't see him at the same time because I was trying to get Mike's attention across the street. He had fallen out of focus.

Mike waved back and I relaxed into my chair and it was then I noticed that he had started walking towards us on the patio. He was hesitant as if each step he took was a risk. There was a question in his eyes? Me? You were waving to me? I realized what he thought and I smiled and called, "No, I was waving to someone over there?" I pointed where. His face fell, the smile disappeared, faint hope was gone. He apologized and turned and continued on his way.

I thought two things:

How often do I feel inconvenienced by thinks that I should be grateful for?

That interaction with that polite old man left him hurt. Accidentally. But hurt nonetheless. I've been wondering what I could have done, at that moment to make him feel valued and less alone. Ideas?