Wednesday, October 18, 2017

The Key Didn't Work: a question

So much of my life as a disabled person revolves around bathroom issues. Is it accessible, can I get into the stall and close the door, how heavy is the door into the bathroom - will it break my footrests, can I use the toilet, where are the bars, and the like. Then there's the need I have to simply not being a jerk and not thinking my disability needs trump anyone else's need. It's a physical and emotional and cognitive challenge just to get around, just to use the toilet, the most basic of needs.

I'm staying in a wonderful hotel, with an amazing room and welcoming staff. The public washrooms though aren't so great. Many I can't get my chair in the stall and none are good for going number 2, for that I need to go to my room. I can make this work.

On our first day here, we checked in early and then used our time differently. Joe went to pick up beer, I went to the gym. The gym has some accessible equipment and I really wanted to get some real exercise in. I'd done about an hour work out and then had to go to the bathroom. The key card did not open the bathroom in the gym and I was afeared that it wouldn't work in the room either. I headed downstairs with a bit of urgency.

There were hundreds of people checking in and the line up were long. I knew from the morning the the concierge was able to check people in so I went to his desk. There were three people in front of me. I had to go to the bathroom, I couldn't use any of the public bathrooms and my key to my room wasn't working. I'm getting increasingly panicked.

The women in front of me all looked very nice. They all looked understanding. But they also looked tired from travel and that they'd been patiently waiting their turn. I had to fight down the urge to ask to just get my key card redone so I could go to my room and thus go to the bathroom which I really needed to do.

I don't like, and I know you won't believe this, talking about my bathroom needs with real, in the flesh, strangers. I don't like the idea of them thinking that I'm thinking that my need is bigger and more important than theirs. I don't like the possibility that they may think I'm using my disability to get to the head of the line. I don't like any of those things, but mostly I don't want to be thought a needy jerk, a man who puts himself before others.

So, I waited my turn. With moist eyes I told the concierge what it was I needed and it was fixed quickly and I was up in my room in moments. Thank heavens.

I've faced the bathroom issue pretty much every day since becoming disabled. It's the balancing act I'm wondering about. Do any of you have issues when needing something disability related, that non disabled people don't worry about - like bathroom access, and worrying about how to deal with the balance between your needs and the needs of others?

Tuesday, October 17, 2017

Conversations With My Penis

Today I realized, with some urgency, that the inside my head talks with my penis have really changed over time. When I was in my teens the conversations went like this:

Hi, I'm here looking up at you, wanna play? Wanna play?

No, bad penis, bad penis, I'm in public.

Come on, come on, it will feel good. You like to play.

No, stop it leave me alone.

Now that I'm nearly 65 the conversations go like this:

Gotta pee, gotta pee, gotta pee.

I'm in the line up for security, wait a minute.

No, no waiting, gotta pee, gotta pee.

Alright I'm through, I'm on my way to the toilet.
/
NOW. How about I go a little now?

NO Wait ... Shit.

This, this, they never taught me in sex education. This, this is why you need to learn about your body across the lifespan, not just when you are young. Excuse me while I go change.

Monday, October 16, 2017

Zipped Lip

Some of the things I haven't said on my travels this year:

To the woman working for housekeeping at a hotel:

Stepping back into the room, to give me space, when I'm pushing by the cart in the hallways isn't helping.

To the guy who looked terrified at the gate when I pulled up:

I don't want to sit by you either buddy.

To the woman working at the doughnut shop in the airport:

Yeah, really, a fat guy just ordered a tea. It's what I want not a miraculous act of restraint.

To the airport wheelchair assistance person:

Really, I know what I can and can't do, if I say I can push myself, I can. I know my body better than you do.

To the hotel valet parking guy:

I don't care that I pissed you off when I asked you to leave while I got out of the car. If you want a show, buy a freaking ticket.

To the woman who asked my about my diagnosis:

It's rude and none of your business. No I don't care if you really want to know.

To the man whose teenager made a pig face at me that you didn't correct:

Great parenting shows itself, you've raised a mean child, you may not get it now, but you will.

To the mom balancing two kids in either arm:

It doesn't lessen you for me to let you go first, I'm in a chair, you could drop precious cargo.

To the clerk who kept trying to get me to wave back as I rolled by:

We don't know each other, okay? You aren't Jerry Lewis and I'm not your kid.

To the people who just walked on and went about their day whilst in the presence of disability:

Bless you. Bless you. Bless you.


Sunday, October 15, 2017

Two Queens and and King

I written about this before.

It really worries me.

We'd just got off a plane and were heading towards the luggage area. A man was coming towards us, about our age, he was walking quickly to get to the gate for the departing flight. I said to Joe, after I spotted the accessible washroom, "Hey would you mind checking to see if the door is locked?" Before Joe could move, this man, who had overheard my question, had assumed I was asking him. Annoyance crossed his face at having been asked to do this but he started to go to the door!

I called out, "I wasn't asking you!"

By then Joe was on an intercept course and the guy, looking relieved, said, "I thought you were alone and were asking me."

All I said was, "I'm not alone."

I could have added "And  even if I was, I can get in on my own, there is a door opener for easy entry."

This happens all the time.

I'm writing about this one because, really? I'm going to ask a stranger for help with going to the washroom? He saw Joe and I together ... no, I've said that wrong ... even though he saw Joe and I together he assumed that I was alone.

The natural state of disabled people is alone, friendless, unloved and unsupported. Isolated people who live isolated lives waiting for friend death to claim us.

Yes, there are people with disabilities who live very isolated lives and that isolation relates to their disability. I know that, I know that it's an issue of social stigma and prejudice and barriers to full inclusion. I know it's because people with disabilities may need to socialize in different ways with different needs. I know and have worked on this issue for most of my years as a professional in the disability sector. I know.

But loneliness is not the natural state of any human being.

It may be chosen, but for the most part we are social beings.

That I can't be seen in relationship to another person when I'm out is astonishing. That same day, when the man thought that I had asked for his help ... we checked into the hotel. I always mark, when I reserve a room, that there will be two people in the room, but the clerk, like most do, prepared only one key for the room and had to be asked for a second key. "Let me see if I can change your room to two queens."

I was tired, and still pissed off from the guy and the washroom. I responded, "We ARE two queens and we really want a king."

Saturday, October 14, 2017

Public Space

Before we went down to the gates where the smaller planes are docked, we were pushing over towards the elevator going down. To get there we had to stop and negotiate the chair and our carry on luggage around a group of three men, taking up a fair bit of space, talking and laughing with each other. No big deal, this happens in airports all the time. At the elevator I wondered aloud if there would be accessible toilets down in the gate area. Joe quickly volunteered to go check and I stopped, with lots of space around me, to wait for his return.

I glance up from checking my phone for email and see an airport employee striding towards me. To get to me he also had to step around the three men who had spread out even more to accommodate the large gestures they used when talking. They were animated about some sport or other and having a great chat.

So why is this airport dude headed towards me?

As he approached he put his hands out, as if grabbing the handles on the back of my chair, I suppose an indicator that this is what he was going to do. "Let me help you get out of the way," he said.

Out of the way.

I am in the way.

There is space on either side of me for a group of 10 to pass and I'm in the fucking way.

I grabbed my wheels, and said, "I'll move when you make them move," releasing one wheel so I could point at the group of three men taking up much more space than I was and in doing so requiring people to actively have to get around them. In my area, not one person even had to slow, but I was in the way.

"I don't mind helping you," he said.

"I do," I said, "and I'm not moving until you make them move. Why do they have more right to space than I do? Why am I in the way and they are not? Let me ask you are you a bigot regarding people with disabilities in public space?"

I was calm but firm.

And no fucking way was I going to move.

And.

You know what.

I didn't.

Friday, October 13, 2017

Thunder Bay And My Chair

So, here's what happened. I rolled into the office and as I pulled into the elevator I both heard and felt whatever holds my front right wheel nearly disintegrate. Rolling to my office felt a bit like hobbling like I did in my youth when I severely sprained my ankle. I was panic-struck. I have a lot of travel coming up, including a flight two days hence. I had someone take a look at it at the office and he thought he could fix it the following morning. As hard as he tried, he was unsuccessful but said that the wheel would definitely stay on but it would be wobbly.

I did a Google search in Thunder Bay and found a wheelchair repair place, a branch of the one I usually use, Motion Specialties. I called them and described my problem to a really nice woman named Terry and when I told her what time we were to land the next day, she told me to come on over and they'd take a look at it.

That's what we did.

I stayed in the car and Joe took in the chair. They'd need, I thought, to turn it over to look at the wheel and that would be hard to do with me in the chair. I suggested to Joe that I could call from the car to talk to the repair person or, if it was easier, they could come out to me. Dan, the repair guy, chose to come out to speak with me. It's a bit hard to describe, even here, what my exact concerns were, given that the chair isn't made any more and certain difficulties I have with the chairs that are currently on the market and why I needed things done in a particular way and how I wanted him to be making decisions as he moved forward.

He listened, to understand, not to question.

That is incredibly difficult to find in a person generally. It's even more difficult when bridging the disabled/non disabled communication gap into which experience battles it out with expertise. When he left I felt he had truly understood my concerns. Even if he couldn't fix it, the exchange had been worth my time.

A few minutes later he was back with an update and wanted direction. I knew what I wanted him to do, but it would be time consuming and there was an easier, although more temporary fix. He'd been so decent that I felt that I owed him an honest answer. So, I asked him if would be possible to do something, let me try it and if it doesn't work to undo it and do something different. He got it, understood why I made that decision, given the fact that he'd listened in the first place, and set off for trial number one.

I turns out that the more permanent fix worked and we didn't need to do more.

I'm not done yet.

When paying I asked them about purchasing something that would make my brakes really grab the wheel. They had become slack and the tires are worn down. Terry went and got Dan and he looked at it and said, I don't think you need to by anything, there's give here I'll grab my tools and fix it. So there in the office the breaks were made like brand new, no extra charge.

Joe and I hesitated to call this miraculous but to find a place far from home that can fit you in during the time you have, and have the parts, and the ability to fix it while you wait in the car. It took less than an hour for this all to happen.

This is my formal shout out to Dan and Terry at Motion Specialties in Thunder Bay.

Thank you both for listening, taking my concerns seriously, and helping me out with both kindness and welcome. I appreciate it way more than you can know.

Wednesday, October 11, 2017

Right Now

My wheelchair is broken.

The front right tire needs fixing.

I am frozen.

With worry.

My focus.

My life.

Is on hold.

Can it be fixed.

And when.

There is never a good time.

To lose mobility.

My disability rises.

Slaps me in the face.

And reminds me.

That freedom is a wheel.

And wheels break.