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.