Sunday, November 29, 2020

That's the work we do

 I was at a meeting the other day and we were listening to a town planner speak. As he spoke he used a phrase that I'd not heard of before, he talked about planning for 'complete communities.' He went on to explain that the term meant that planners had to consider 'all' and by 'all' it was clear that he was speaking about everyone including the long list of minorities. For him, it wasn't an access issue for people with disabilities but an access issue for everyone.

I drifted off a bit because he was, after all, talking about town planning. I began to think of the term 'complete community.' I had interrupted him to ask if that was a term that he used or was it a common phrase in town planning. He said it was a common phrase, I told him that I liked the term and would be stealing it. What I like about the term is its shadow. If there are complete communities, there are incomplete communities. Communities that don't welcome, that don't embrace and celebrate difference, communities whose barriers are as much social as they are physical.

I have only once or twice been at events where there was a complete community of attendance. Those times were amazing and they seared into my brain an image of what the world could be like. We are needed. Without us there is no community, it's incomplete, unfinished, a cake that failed to rise.

After the meeting was over, I shut down my zoom and began to see how planning for and building a complete community is necessary. It doesn't happen spontaneously. It must be made.

And that's the work we do. 

Thursday, November 26, 2020

What Joe Said

 Today just a silly post.

Joe and I were talking, recently, about the ways in which people refer to disability. We are both plainspoken and we both prefer the word disability to any of the bafflegab that people come up with. Diversability and Special Needs are words that shame uses to cover up what they consider monstrous. Yeah, we are opinionated about this. Yeah, we get that a lot of people disagree. And, yeah, we think it's fine that disagreements exist. I'm okay with knowing I'm right and I'm comfortable with you thinking you are. Ta. Da.

Anyways, we make something for Christmas that we give out as gifts. Joe was showing me what he wanted to serve it in and I thought it way too big and would cost way too much. So Joe said, thinking hard, "I guess we'd better get something differently sized." He said it not even noticing it.

We had been in the kitchen and I was at the stove when the words hit, the giggles started. Soon, I'm hanging off the edge of the stove 'differently sized' you just said 'differently sized' and then I lost it. HAHAHAHAHAHAHA 

When I came too, I felt so good. I looked at the clock and I'd been laughing for over 15 minutes. Well, I'd kind of stop and then start up again over that time. Joe laughed too, at first tenuously and then full-throated. 

I don't know what it was about that moment, but I think we are all living in stressful times and we need to find humour. And when we do we should allow ourselves just to go with it.

Here's hoping you have a differently sized day today.

Tuesday, November 24, 2020

Three Stories from the life of a Disabled Man: Story 3

 I showed up to get blood work done. I was surprised that there was no line-up, I'd been a month or two ago and what with COVID keeping people out of the waiting room, we stood dutifully six feet apart in a queue that moved incredibly slowly. I thought I'd gotten lucky because of the time of day. I was welcomed in and I took a seat.

Then I noticed nearly a dozen people being turned away. I couldn't hear why they were being sent packing. On my way out, I ask and found out that it was now appointment only and those I'd seen turned away were, like me, people without appointments. My disability, I was told, was the deciding factor in letting me in. It's hard, apparently, for me to make my way around so they 'bent the rules' for me.

I didn't know how to feel about what had happened. I was glad to have gotten my tests done, true. But I don't have difficulty getting around, we have a car, we are retired, it's not tough. This was done without my knowing. People did things without me being informed or giving consent.

I ain't gonna lie: I was glad I didn't have to go home, make an appointment, and come back.

But I'm also not sure I was happy to learn the truth behind what happened. It made me wonder what other things are happening for me and to me because of my disability that I'm not aware of, I see prejudice when it's nasty but do I see it when it comes wrapped in kindness? Or being made the exception to rules others have to follow? Or, or, what?

Joe says I overthink these things.

Maybe I do.

Maybe sometimes I just need to let shit happen.

Monday, November 23, 2020

Three Stories from the life of a Disabled Man: Story 2

 We were going shopping for groceries. We both thought we'd come at a time early enough to avoid lineups but we were wrong. About ten people were stood in line waiting to get into the store. When I rolled up, approaching the end of the line, one of the staff at the front door called over to me, very loudly, "Hey, you in the wheelchair, you can come straight in." Every eye in the line-up looked over at me and I felt immediately on stage. None of them looked perturbed or in the least upset by this blatant favoritism. I called out, "No, it's okay, I'll wait in line like everyone else."

He ignored the, "like everyone else" part of what I said and called out, "It's okay, it's store policy." I was at the end of the line now and called back, "I'm okay here." Shortly thereafter a staff came out the other door behind the line-up and said to me, "You can go to the head of the line." I said, "No, it's okay." Then the woman in front of me turned to me and said, "Boy do they want to get you into that store!" I nodded smiling. She turned back towards the front of the line and then turned back to me, she said, "I think they're just trying to be nice, but it isn't really is it?"

I told her that I immediately felt on display and singled out, I knew the store policy and have always ignored it. She said that she turned immediately to look at me when the loud call to me was made and she got that made me kind of less than everyone else. I was blown away that someone got it. We chatted until it was her turn to go in. When we were invited in, one of the guys said, "We let wheelchairs in first," as if he was giving me information.

"I am not a wheelchair," I said, "I'm a person who uses one. There's a big difference."

"Soooorry," he said as if he was talking to someone who was way too sensitive. And maybe I am, but after it happens for the thousandth time, it gets wearying.

We bought cake.

Sunday, November 22, 2020

Three Stories from the Life of a Disabled Man: 1

 I was at the gym and just finished working out on the cable machine. There are only ten people allowed in at one time and the place is huge so I didn't notice anyone watching for me to finish so they could use the machine. When I was done one of the bodybuilder guys was right over to the machine and did only two or three different exercises and was done in about ten minutes. I felt immediately bad, I don't want to be seen as someone who hogs a machine, even though I guess that's what I was doing.

I thought to myself that I can't be held responsible for knowing what someone else wants, that true if it's Joe but it is especially true if it's someone that I don't know. I thought about this as I was doing the ropes - badly and when I was exhausted from them I had decided to speak to him. Now I don't usually speak to others, especially bodybuilders, who exercise in their own space. But that is what I intended to do.

I caught him as he was headed to the door, I rolled up to him, keeping social distancing in mind and asked him if I could speak to him. He stopped and I began explaining, cause it's not readily apparent to non-disabled people, that there are only two machines, and the ropes, available to me all the other machines are inaccessible. 

Midway into my planned spiel, he interrupted me saying, "It's okay, don't worry about it, it's okay."

Anyone who knows me knows I like to finish my thoughts, I said, "Wait a minute," and then continued, "So I'm on that machine for about an hour. If you need to work through that machine to finish your workout or fit it into your machine, just ask me, I'm old, I'll enjoy the rest."

He hadn't heard me, "No, it's okay I can do other exercises to compensate when I can't use the cable machine, it's fine, don't worry about it.

"Please wait and listen to me, I want to be part of the gym community, I don't want to be a machine hog, I want people to work through when they need to, like everyone else. So just ask, okay? He started to speak, and I interrupted him, "Please don't just keep saying it's fine." He looked at me for the first time and said, "Yeah, okay, if I need it, I'll ask you, hey, what's your name?"

Sometimes community exists but sometimes a little push is needed to gain entry.

Wednesday, November 18, 2020

Why is the Window not Open?

 This story is about a hospital. Let me say this again, it's about a hospital. When you come in there are usually wheelchairs everywhere. So they are familiar with the rolling classes. We arrived early enough for me to have a fight if I wanted one.  I was going for a test that I knew would be uncomfortable so my nerves were already frayed. But when I rolled in and was directed to the desk where I would be screen. There were two windows open. Both of them were set for people who were walking, I could only crane my neck up. As a result, they spoke to Joe who was accompanying me.

Joe knows that I don't like this happening but he was responding to the structure of the place. I couldn't hear their questions and they couldn't hear my answers. The frustrating thing is that right there beside them was a window set at an accessible-height clearly marked with a Blue Disability Sign. When done, I rolled back and told them that I had been to the hospital for tests several times in the last few months and I'd never seen it open. That made no impact so then I asked bluntly. Why is that window not open?

You know the answer they gave me?

I shit you not.

"It's not open because no one is sitting there."

If they thought that an answer or explanation, they were going to be incapable of understanding. If they have it but don't use it, they don't have it. They get to be happy and get to point out on tours by any of their funders that they are accessible. But they don't get the idea of accessibility, the will to be accessible, the desire to serve everyone equally. 

Wouldn't you think that a hospital would always have that one open? It's accessible to everyone. But we aren't a part of 'everyone' we are a part of those barely worth notice. As a disabled person, entering a healthcare facility, nervous and maybe a slight bit afraid seeing this kind of structural barrier, right beside something that would be workable but isn't used because the staff prefers not to use it. One wonders if that kind of bigotry will carry through to the doctors and nurses that will serve you.

The great thing is that the doctors and nurses at this hospital are amazing people. Not only are they really smart, not only are they way more than competent, but they are also kind and welcoming, and treat each person as a person.

So once past the barrier of indifference and subtle hostility, it was a fine visit. My test was done and I was told my results ... I'm fine.

Monday, November 16, 2020



That's what I will remember from this weekend. Ruby and Sadie are old enough to take care of themselves and therefore haven't been staying with us on weekends as they have done for many years. This weekend, cause we were really missing them, they came to stay.

They bring with them, even in the dark times of the pandemic, something bright and brash and bold. From the moment they enter our home, it's like a piccolo played by an elephant, with noises both surprising and chaotic. They are, after all, still young. We, on the other hand, are old. Or 'near death' as they would have it. 

Sunday we settled down for a good old games afternoon. We played crokinole in teams. Ruby and I took on Sadie and Joe. We are all, by nature, competitive, so a games day is something less than a blood bath but something more than a blood feud. We were nearing the middle of the game when Sadie had declared that she had scientifically scoped out the board, demanded that we all take our arms off the table and that we be completely quiet. We looked at her as her brow formed in concentration. Then. She took her shot.

Somehow she hit the playing piece in a manner that threw it simultaneously up into the air and back into her face, hitting her in the forehead.

An explosion went off.

Everyone laughed with abandon. Joe was leaned by in his chair crying he was laughing so hard. Ruby was bent over and Sadie had collapsed on the ottoman and I was sat upright laughing as loud as I have ever laughed.

To me suddenly they were 'the girls' again. Their laughter had freed them from the burdens that being a 'young woman' puts on them. The little girls we loved were in our home again.

About an hour later I noticed Ruby walking down the hallway towards her room and she, once again, was a beautiful young woman, her height and her carriage signifying her status as an 'almost grown-up woman,' glancing at Sadie and she too was back in her body a tall and graceful girl. We love them too. We love watching them grow and become powerful women.

But oh my, it was nice visiting with 'the girls' again.

Saturday, November 14, 2020

Talking to Me

 COVID has had an odd effect on seemingly a lot of people. All disabled people know the phenomenon of total strangers smiling at or greeting with a friendly (like to a Labrador dog), "Helllllllo.' This has skyrocketed and I'm greeted by strangers at a near-constant rate. Something about the lockdown has people trying really hard to be overtly nice.

But they aren't addressing me.

They are addressing DISABILITY writ large.

That I'm in the chair versus anyone else in my chair is irrelevant.

When people say that they are just being kind, you can't actually be kind to a wheelchair or the abstract concept of disability, you are kind to people, living things. And that's not me and it feels weird to be acknowledged and not acknowledged at exactly the same time.

But a few days ago, I was finishing up on the cable machine at the gym, a total stranger stopped on his way by. I've seen him many times before but we'd never spoken. That day he stopped said hi and asked if I'd missed the gym like he did during the last lockdown. I said that I did and we chatted for a wee second or two.

I enjoyed that because he didn't speak to my chair or my disability, he spoke to me as a fellow gym member as someone who shared something with him. Human to human.

It's this kind of social contact that I miss.

The other kind makes me feel lonelier than I've ever felt before. 

Singled out and disappeared is an odd act of violence that I'm not sure the privileged understand.

So it felt good to be referred to like another human rather than the occupier of space within a wheelchair.

Friday, November 13, 2020

Gym Tales: 11 at 11

 It was near 11:00 AM when I was finishing with the cable machine and switching over to the ergonometer. Joe was switching from the ergonometer to the standing bike. I approached the staff to ask them to shut the music off or a moment of silence and found that they had already planned that and someone was just there to click off the radio that blasts through the place. When 11:00 hit, the radio was turned off, and even though there had not been an announcement that it was the 11th hour of the 11th day and that was the moment that Remembrance Day is officially marked.

I was astonished to see that everyone stopped. Weights had been set down. People got off the machinery and stood silently beside it. Just then, a man with an intellectual disability got off the bike which faces away from the room,  which he was on and turned and headed towards the stand to get cleaning wipes for his machine. His footprints echoed loudly in the silent room. And then. They stopped. He had looked around, seen all of us still and silent and he, too, did not move a muscle.

A deep silence now filled the space.

No words.

No movement.

No trumpets.

No prayers or parades.

Just silence.

The music came on and it was clear that everyone had been quite moved by the moment, that a real tribute had been made. The man with the disability marched back to his machine - he was furious. He muttered something about not knowing.

But he need not have worried, his ability to read the room, to take in the expectations from his surroundings was remarkable. He wants to be part of the community, and in that moment, because of his skill and his skill alone, he joined as a full participant.

Wednesday, November 11, 2020

My Father's Wars

"Here's your mother ..." that's pretty much all my father would say upon hearing my voice on the phone. He never said, really, anything. No greeting. No question as to my well-being. No inquiry into my job. Nothing. He knew that I traveled all over the world, that I was prolific in my publications, that I was respected in my profession. I really wanted that to matter to him, it didn't. I wasn't one of those who whined about needing affirmation from a father, except, sometimes. I really did want to make him proud.

But the bar had moved so far away from his ability to feel proud of me, or even acknowledge me when he discovered that I was gay. We had no big explosion. We had no coming out scene. There was just this silent, quiet death of a living child. He didn't know what to say to me and he didn't seem to want to learn, so I became the call that was handed over to my mother.

Once, I made a comment to my mother about Dad's refusal to speak to me. It was made in a moment of weakness. I knew she would talk to him about it and I kicked myself for having been weak. I knew that any call that came would be one that he was forced to make. And he did call. The next day. I paused, stunned that he was on the phone, and I immediately felt sorry for him. I said, "Dad, you don't have to call me because mom told you to." I wasn't angry. I just wanted him to know that he didn't have to do what he was doing.

He became very angry at me.


Hung up the phone. 

That was my last call from my father.

Years later I would talk to him when he was hospitalized and my brother was away. My brother was very dutiful towards my father and they had a very good relationship. But on occasion, I was called upon to talk to doctors and get information that I would translate to my father. My father never questioned doctors, but I did. Those calls were brief but cordial and I was relieved that we had seemed to resolve something.

But then.

My father became very sick. He was hospitalized and not expected to live for a lot longer. Joe and I traveled to where he lived and visited him in the hospital. On my first visit, I had determined to thank my father for something that he had done for me, something that changed my life, something I am today still grateful for. I had never done so and now seemed to be the time.

I nodded to Joe silently asking him to leave for a few minutes. Then my father and I were alone together. I told him that I had something to say and he braced himself. I thanked him, and started to cry when I was done, I said, "I thought you should know." My dad said, "Well, you certainly found your place in the world." Soon after Joe came back in.

Then we all talked. When I was younger I had asked Dad a few questions about his time serving in WWII and he had very little to say. He didn't like speaking about the war and kept his time there pretty close to his chest. But now, he began to tell stories from the war. He was a remarkable storyteller, I never knew. I never knew. He talked and we all laughed and it felt, like for the first time in years, that I actually had a father.

My father's war wasn't one that he talked about. But that day, on his deathbed, he shared some of the funny moments and talked about some of the people he remembered. I got the sense that every day was Remembrance Day for my father.

But then there was the other war. The one he fought right to the very end. The war that he had with his understanding of masculinity and a son who didn't fit. From the start, didn't fit. The son who at 16 had fallen in love with another boy, and who didn't hide it. The son who in kissing his boyfriend killed his father's hope.

He won that war, in the end. 

For about 20 minutes.

And then I had to leave. I was never to see him again, but when I called, he spoke with me.

Sunday, November 08, 2020


 I can't even tell you how much I hate them. They are exploitative, they are cruel, they allow people to gawk and then relieve themselves of guilt assuring themselves that they have love in their hearts as they press "like." You've all seen them, the most recent was a picture of a small child, with facial differences, looking up at the camera and smiling, and then the 'show me I'm beautiful' or 'no one will wish me a happy birthday, will you' or 'surround me in a circle of hugs.' I respond to each one of these simply stating, 'this is exploitation, stop it' and to my consternation, even that comment gets 'likes' from the poster of the image.

I wonder how many of the people who look at these pictures see, actually see, that most of the people within them, members of the disability community, are fucking smiling up at the person who is taking the picture. That's right smiling. They don't look desperately sad - although most of the viewers must think that they must be sad to be like that. And in an instant, those in the image are objectified, made unhuman, made different.

One wonders if the people who like the image would actually like the person in the picture, or even give them a chance. In the real world, people are prickly and demand respect, they are blood and tears and sweat and smells and challenging and unreservedly ungrateful for patronization. No, it's easier for the viewer to sit snug in their blankets and snugger still in their self-satisfaction and privilege. Oh, what it is to be the viewer, not the viewed.

The internet can be a cruel place. And it can allow cruelty to go unnoticed. The poster of the image gets to be the poster of the image. That means they've looked at the picture and seen something that isn't there - a need for anything from you, and instead seen something pathetic and pitiable and a lovely opportunity to munch on the realization, never spoken, that the like button has been weaponized to devalue someone different from you.

Fuck that.

Friday, November 06, 2020

I've Another Email to Write

 Today everyone seems to be attending Zoom meetings and though it takes a little getting used to, it's a safe and convenient way for us all to meet. (I sent out my very first Zoom meeting invite on my brand new Zoom account. Although I've actually had it for a while, I used it for the first time today, but I digress.) I found something interesting happened yesterday while meeting. I was meeting with a group of people only one of which I knew before the meeting.

In the meeting, I was an active part, something that should not surprise you, and about halfway through I 'came out' as a wheelchair user. I was sitting in my chair during the meeting but the camera does not catch the chair because, um, I'm in it. Something strange happened. Subtle changes, I acknowledged less often by the chair and my ideas were packaged and parked in that space between 'not recorded for the minutes' and ' would you please shut up.'

I tried to point out in the meeting what had just happened and that the big reveal of my disability diminished people's respect for my ideas. Gosh, they got angry ... at me. People don't like having their prejudice pointed out to them. People don't want to acknowledge the privilege of always being considered legitimate. So, I was seen as a disrupter. 

I received an email two days later saying, in effect, 'thanks for your contribution, we don't feel that it would be necessary for you to continue on this committee.'


I was there as a volunteer from the start.

And now I'm not.

I guess we should just eat shit for dinner and thank the asshole that served it up.. That's not my way.

And this isn't over.

Wednesday, November 04, 2020

Baby It's Cold Outside

 You can tell winter is here.

The snow is the first hint.

The reduction of wheelchair prints in the snow is the second.

This is a tough time of year for me, The wheelchair being metal turns freezing cold in an instant. I managed a few years ago to sit in the chair, with my skin a wee bit damp from a shower, and freeze my ass to the frame. It was a comical few minutes as I detached from dignity in order to detach myself from the chair. It's not a mistake I made twice.

I was planning on going out yesterday but gave way to a need to nest in the warm. I stayed in. Today, I'm venturing out. We'll leave in a few minutes, I want my skin to dry. And I marvel in my choice to do what I will, even at the spur of the moment, I marvel that I get to make a plan and then reverse it, simply because I want to.

We talk about the rigidity of people with disabilities and their love of routines but we don't talk about how we react when a plan has changed, when a person says 'no, I don't think I'll do that today', or when someone abruptly changes their mind about something.

Then you see rigidity.

Then you see encouragement that looks like force, that looks like coercion, that looks a little bit like violence. Voices get louder, prompts get more insistent, verbal becomes physical.

I have the luxury and privilege to be an old man in a wheelchair married to an old man in slippers. It's pretty easy to make and change plans.

Community living is often seen as where someone lives and where they have access to - rather than who they are and what choices are available. A home in the community is one thing, but being home in the community matters too. Being in control of what happens within four walls as well as what happens outside of four walls.

I was freer yesterday than anyone 'encouraged' to be outside.

And I'm grateful for that.

Monday, November 02, 2020

Tut Tut

 Do you ever fall into the stereotype trap and not even notice you're caught. That was me. Today. It was freezing cold out and when I attempted to take my wheelchair for a run, my fingers almost froze off. The biting cold of the metal was making a feast of my fingers. I knew I was going to have to change into my bulky winter gloves and was sorrowful at the realization.

Then, once in the car, seat warmer on, my side of the car 5 degrees higher than Joe's side, how does that work, and feeling warmth creep back into my fingers. I noticed a young man with an intellectual disability making his way through the parking lot towards the mall. I've seen him before, always on his own, always walking as if he had very important business, which he may well have.

But in this instance he was in a flimsy jacket, open to the elements, and a light tee-shirt underneath. I wondered to myself, with some hostility, "Who let him go out of the house dressed like that? He'll catch his death." Then went back to enjoying the warmth in the car.

My brain tapped at my temple trying to get me to notice something. It wasn't for about 15 minutes that I gave in and thought about the day. Something was bothering me. I thought of my hands, the gloves, the hill, the car, the warmth and then I thought about what I thought about the young man with an intellectual disability.

"Who let him go out of the house ..." I'm assuming that someone let's him out, that he doesn't do that himself. I'm also assuming that it's someone else's responsibility to dress in a particular way. I also noticed that I see other, non-disabled teens and young people out dress similarly and I tut tut and leave it alone. I don't see them as under the care of someone whose life is centered around done up jackets and warm mittens. That's their responsibility and the teen years aren't big on responsibility.

The bias that I have, even after all these years, can slip by almost without notice. I need to get better at getting disability, and I hope to do so before I see him again.