Saturday, October 21, 2017

Brussels Sprouts

Last evening I made one of our family recipes. We have several of these. Recipes that were developed based on opening the fridge and seeing what was there and, from that, throwing a meal together. Sometimes a magic happens and the meal joins the list of our comfort foods. Food that tells us we're home, we're safe and we're together. We've been on the road a fair bit and we have a fair bit to go, on the flight home I had a craving for what we call 'cabbage roll casserole' even though it's made with Brussels sprouts rather than cabbage and even though it's layered not rolled. We've been making this since someone gave us a big bag of sprouts nearly thirty years ago.

It's a bit of a complicated recipe, simple to make, but it involves chopping and steaming and frying and grating before assembling. I started by trimming the sprouts and then I was off. We have this several times a year and the recipe is firmly in my head so there was no need to checking or reviewing there was just doing. I got into the rhythm of the process and flew around the kitchen getting what I needed, getting things out of the fridge and then putting back what was no longer needed. At the same time we needed to make a different meal for the girls, open faced grilled cheese, another home grown recipe, and that needed to be done.

Over the course of cooking, first Joe, them Marissa, then Ruby and then Sadie joined in, each doing different parts of the preparation. It was organized pandemonium and I was right in the mix with everyone else participating as an equal member. An equal member is a necessary member, someone who's work made the end result possible. All of us had our roles and our individual tasks, and we all did them.

Somewhere in there I realized that I was having fun. The bunch of us in the kitchen, the bunch of us talking, laughing and working. Ruby and Sadie came up with an experiment they wanted to try with their sandwiches, to see which way of putting on the cheese would taste best, so they did that, loving that their suggestion was greeted with a ' great idea' (because it was) and then just doing it. 

This is probably a very ordinary scene for most of you. But for me, it's still extraordinary. I'm still getting used to the gifts of living in an accessible space. The fact that I can use my kitchen means more than being able to prepare food, it means that I can be a part of something bigger, something better, something meaningful. It means that my belonging isn't just a conceptual idea it's a physical reality. It means that when I am remembered by the girls in the future, they will remember me, now, as someone who worked beside them, rather than someone who sat in the doorway to the kitchen and couldn't join in.

Accessibility is more than just a space to use, it's about being able to live freely. There was a moment, last night, when the girls were on either side of me determining the ketchup, deli slice, cheese ratio, when my soul felt deep gratitude for finding, after 11 years of being an outsider in my own place, home.

Friday, October 20, 2017

It Doesn't Care

I'd just finished a really good breakfast at one of the eateries in the airport and were preparing to get up and go to the gate. I asked Joe if he wouldn't mind, I always finish first, if I rolled back to the accessible washroom to ensure the tanks were dry before getting on the wee plane. He just happily continued on with his breakfast then as I took off.

I had just come to the door of the accessible room, one of those separate from either the men's or women's bathroom, when the door opened. A non-disabled man stepped out of the washroom and as soon as he saw me he was full of apologies. But none was necessary, he was a transgender man and I knew that for him, this bathroom meant the same as it did for me, a safe place to go when you need to go. It broke my heart that he couldn't simply go to the bathroom that matched his gender. I don't know why he made the choice he did, safety probably, but there may have been other reasons as well.

He was explaining that he knew the washroom was primarily for disabled people but that he had chosen to use the washroom because, and here his voice faltered. Just for a moment he couldn't speak. Just for a moment I saw how hard the world he lived in was. Just for a moment I got a glimpse of the weight of prejudice that he carried on his shoulders. Just for a moment.

All I said was, "The best thing about these bathrooms is that the toilet doesn't care who pees in it." He looked at me, and I knew he saw a cisgender man of a seasoned age, disabled or not, he couldn't predict how I would see him or react to him being in 'my' bathroom.

But it's not my bathroom.

Is it?

And I wanted him to know that. I know what it's like to have people deny me the space I need. I know what it's like for people to wish me away from public space at all. Disability reveals people's character almost instantly. It's possible to really learn the depth of people's prejudice and anger at the mere idea of difference. So I don't understand what he experiences on a day to day basis but I know what I do - and that gives hint enough.

He thanked me for understanding. I thanked him for his thanks but turned it down. "The world would be a better place if we all just learned to share space, don't you think? That's all I did, and you don't have to thank me for it."

"The toilet doesn't care, does it?" he said and laughed a bit.

"Well, when I sit on it, it complains a little," I said, "but no, it doesn't care."

"Take care of yourself," he said.

"You too," I said.

My the world, one day, be safe for all of us.

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.