Wednesday, July 30, 2014

Delete

My Edited Day:

Joe picked me up at work and when we got home we headed straight out. There were things we needed to do and we knew if we sat down even for a moment, in the front room, all bets were off about accomplishing anything. So, out we went. As we wandered getting first one thing, then another and finally the final thing done, we both started feeling better. It was nice to be out. It felt good to get some basic chores done and things accomplished.

Of the many paths home, we chose the one that was quickest. Nice to be out. Nice to have things done. On the last leg of the trip, I always race ahead of Joe, push my chair to it's full speed, and enjoy a brief moment of riding just for fun, not constrained by walking speed. As I was going down the road a cyclist, heading the other way, on the other side, veered over to where I was. He was smiling, his greeting was friendly.

"Hey, he said.

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... met Joe at the door. Joe asked me about why the cyclist came over to me, what did he say. I told him that I had deleted that conversation. If my computer can delete, I'm going to too. I could see that Joe was curious but he was respectful. I didn't want to bring a conversation foisted upon me indoors, I didn't want it to enter my head or my heart or my day.

I have to do this far too often.

Far.

Far.

Too often.

There are days where the most courageous thing I do, is simply go out.
 

Tuesday, July 29, 2014

Alone??

"Alone??" he said, and then to clarify, "All alone?"

I had been making my way north on Church Street, headed towards the pub. I ran into an acquaintance who, actually, we see most often at the pub. After a brief hello, he commented on my state of being 'alone' on the street at that moment. I told him that I was indeed alone and before I could continue to say that I was meeting Joe at the pub, he said, "Are you allowed to be alone?"

Allowed?

Allowed?

This guy has seen me in a pub, chatting with people. This guy knows from conversation that I go to work every day. This guy knows all that and he asks me if I'm allowed to be alone. I said, "Of course I'm allowed to be alone!" I'd answered before I realized that I didn't need to answer - I don't have to check in with him or explain to anyone who I am or what I'm doing or why I'm freaking alone. He didn't drop it, "Where's Joe right now?" he asked.

"Listen," I said, "this is silly, you see that right?"

"I just want to make sure that you are OK being all by yourself."

This guy KNOWS me.

"Fuck man, give me a break here," I said, "just because you walk and I roll doesn't automatically make you responsible for me, you are not my minder."

"Well, if you're going to be like that, go head, get run over," and off he stalked.

For those of you who are worried, I didn't get run over.

I recognize that many people who know us casually pretty much always see Joe and I together. But that's because we do stuff together, we go places together, we live with each other and we like each other's company. I assumed that people had that figured, now after two or tree variants of this 'alone' conversation, I wondered if they think we are together all the time because I need care taken of me all the time. (I don't.)

So, at the bar, which, inspirationally, I arrived on my own, I asked Joe if people ever comment on him being alone when I'm not with him. He thought for a second and said, "People will say, 'Where's Dave?' or 'Where's the big guy?' but they don't often make a comment about him being alone.

The strength of a stereotype: disabled people as constantly needy and as constantly requiring care - can be measured I think in situations like this. Even though this man knows me as a working adult, who does adult things like hang around in pubs, the disability shouts while familiarity whispers. Stereotypes can be, I discover, stronger than actual interpersonal experiences.

Shit.

That makes this work so much harder.

But at least I'm not in it alone.

Monday, July 28, 2014

What Matters

Usually, I try.

Really.

When I'm in a situation where a staff offers me special assistance, like going to the front of the line, or having things carried for me, or any other kind of 'kindness' offered to me specifically because of my disability, I decline. Always politely. I figure that if I can do it, I should do it. Even if it takes a bit of extra effort. I'm never really sure who I'm doing this for ~ is it for those watching, do I want them to see an independent disabled person doing it like everyone else (even though I know I'm not). Or is it for me, proving to myself that I can still do what I need to do without much in the way of extra help. Maybe it's a bit of both.

But Sunday.

At church.

My chair fits into the accessible seating area with a little bit of manoeuvring. Getting out, equally, takes know how. It's not just a simple turn. Even so, when communion is offered, and when I decide to take communion - which isn't all the time, I swing my chair out and then back and forth and back and forth and back and forth until my foot pad clears the pew in front. It takes a few minutes, but I figure God's got time. Others in the row may choose to take communion in their place from the person who is assigned that week to take communion to those of us who may find it difficult to get up front. But me, I go up front.

But Sunday.

This Sunday.

I was tired. I wanted communion but the thought of back and forth and back and forth and back and forth was just beyond me. So, when asked, I signalled that I'd like to have communion where I sat. It was brought to me, I took it, was prayed over and it was done. Nice and easy.

Odd thing was it didn't matter to me. It didn't seem to matter to anyone else. Not sure why I worried that it might.

Sunday, July 27, 2014

Audience

Today I am audience.

At The Metropolitan Community Church of Toronto, this morning, Joe will be making his first appearance in the choir. During the summer, with the regular choir taking holidays, they ask for congregation members to step up, step in and sing. Joe has a lovely voice and he sang in a choir for nearly 10 years when we lived in Quebec, so he volunteered. He's been to the practise and he's ready to go. He'll be singing in both the 9 and 11 o'clock services. The 11 can be watched live on their website and I think it's available for a few days afterwards too - for those of you who want to see his shining face set ablaze with song.

For me, this is great. Joe's always in the audience at my lectures, I now get to return the favour. We had a rough time getting WheelTrans booked for this, as it ends up they can get us there but can't get us back. So we decided that we'd make our way to the nearest accessible subway stop, which is a long walk, but I so didn't want to miss this experience.

During the whole time we were attempting to get a ride there was never a thought of 'oh well, I can just watch it on line.' We've learned as a couple, that if we want to do what we want to do, we have to consider my disability and then figure out how to work things out. It's never really the disability that's the issue, it's thinking of a creative solution as to how to make our life work the way we want it to work. It helps that Joe hasn't grown tired of the constant nature of  'disability deductive thinking' - he, like me, remains determined to make things happen the best way we can.

This doesn't mean that we're 100 percent successful or that we don't run into issues that we just can't figure through - but it means that haven't let those times influence the NEXT time. We haven't learned to just 'give up' yet.

I fear that.

Because it's tempting.

But, for today, we've got it figured, and I get to go and ...

be audience.

Saturday, July 26, 2014

Tea Pee

The last thing, the very last thing, I do before I travel is pee. Even if I don't have to, even if I have to wring the bladder out, even if I haven't had a tea in a couple of hours, I go pee. I'm over sixty, I'm a wheelchair user who travels strapped to the floor of a van. I go pee. When we left Harrisburg to make the drive home, I did the deed, because it's ritual but also because I'd just done a lecture and I'd had a cup of tea, taken in quick sips, as I talked.

We got to the van, got me in, strapped me down, loaded the van with luggage and bags and bags of stuff from shopping. About three hours in to the trip I began to suspect that I wasn't going to make the full seven hours home without stopping at a 'rest stop' which is just a nice way of saying 'pee palace.' Our route took us through a lot of countryside so I just had to focus on something else.

I decided to read. I read. And I read. And I read. Until my book had this wonderfully descriptive passage about the main character taking a shower. I could hear the water ... I put the book down. It wasn't helping.

I now announce to Joe that we'd best be thinking of a place to fill up the tank of the car and drain the tank of the passenger. We stopped at three places and did neither. The stations weren't accessible. I'm harsh on these, if I can't pee at your gas station, you can't put your hose in my car. I'm still OK, still in control, but getting a bit worried. I begin to sweat. I wonder if that will help.

We find a place, it's accessible, we're good, I'm dry, Joe pulls up beside a sidewalk so we can put the ramp down and I can exit. But hold on. First he has to unload all sorts of stuff before he can unlatch my chair from the floor, before I can transfer to the power chair, before I can move the power chair which is presently surrounded by stuff. The power chair is slowly released from captivity. This takes longer than you imagine. I wonder, briefly, if crying would help.

Have you ever noticed that when you are in the car and you have to pee that you're OK until you've parked and then, WHAM, you've suddenly really, desperately have to go. It's like your bladder can sense the presence of the toilet. I'm being calm. Inside I'm thinking, hurry up, hurry up, hurry up, hurry up. I see other drivers park and rush into the building. Great, there's going to be a line up. Great, great, great, and why did I drink that FREAKING tea? Finally I'm out. My chair rears up and bursts into a quick trot to the building.

There's no freaking door opener. Someone rushes by me, also over sixty, also looking like they've got water on their minds. I grab the door, I get in. I hear Joe cursing as he's trying to get everything back in the van. I look over to him, I can see the Pacific Ocean in the blue of his eyes. It's a multi stall bathroom with a row of three urinals. All the stalls are taken but the accessible one. I head to it at the same time as a young teen boy does.

I point to him saying, "new plumbing," and then to myself, "old plumbing." He lets me go first.

Blessed relief.

From strapped down to zipped up didn't take that long but it felt like eternity.

Back to the car, unload everything, get the power chair in, get the manual chair in, get strapped down, get the stuff back in. Get back on the road. Back in Canada, we figure we've got it made, we're close to home, so we stop for a Tim's Tea.

That, my friends, was a mistake.

Wednesday, July 23, 2014

Really I'm Fine

" For a few seconds, or maybe a minute, I hated being me and I hated being disabled and I hated needing what I needed."

This line, written a few days ago, expressed a keenly felt moment because of a situation out of my control. I've received little reaction in the comment section of my blog to what was written but have, since then, been receiving emails, at least twice a day. The emails break down into two categories: some are worried about me; others are worried by disappointed in me - feeling my 'disability pride' stance is a sham. Both types of emails come from people who I don't actually know and who, even at a distance, care for me.

This morning, I thought it was time to address that sentiment.

I don't think having moments of self loathing (which I stated earlier in the same article) or having moments where a certain aspect of one's body, one's ability, one's personality is hated says anything about a person except that they are human.

It was a moment.

I've had moments like that before and I will again.

Just like someone who might live happy and well as an extremely tall person can have moments when they just hate the constant jokes or inconveniences. It's a moment. It happens.

And it happens over everything ... I hate it when I get so loud at a party; I hate it when I can't work up the courage to talk to someone at a party; I hate it when I get nervous and fumble my words; I hate it when I speak too quickly.

I don't think that non-disabled people get to have moments of like that and we don't. I don't think it's fair that their statements mean what the mean and ours are laden with extra meaning as those who hear slather prejudice on our words like thick marmalade on toast.

I said it.

I meant it.

It's over now.

Still disabled, still proud, still going strong.

|Moments are just moment.

Really.

I'm OK.

Tuesday, July 22, 2014

Gunpowder

Yesterday I noticed a coffee and tea shop that looked both lovely and cosy, I suggested to a very willing Joe, that we head in. The ramp up was unusual because it was built with a curve in it and the railings were like you'd see around widow's peaks at the top of old houses. I managed the curve and then the turn. We got into the building just fine. We ordered our tea and then were given the option of sitting up front near where most customers were sitting or in the sitting area in the back.

We went to the back. There were tables and chairs and sofas and a sense of calm and quiet. Gregorian chant played quietly in the background, and we sipped our tea and chatted about the events in the day. It had been a good day because I'd had a good audience, all 200 or them, who made me feel welcome and who listened with interest and asked questions with passion. It felt good. So we chatted about the day and the conversations had.

We chatted through our day off, the one between lectures, and what we would do. Ideas came and went, slowly a set of plans began to form. Soon our cups were empty and we were on our way. We told them how much we enjoyed this little oasis in our day and we were invited back. It's already on our plan so we said we'd see them again.

On the way out, we encountered a problem. The ramp worked fine for turning up and right, it wasn't doing well with turning left and down. My back wheels simply clearing the space. I was full of calm from the music and from the gunpowder tea, so I tried a few times, finally managing it. Had I been in a different mood or a rush, this could have been disaster. But the place had been peaceful, we had been made welcome, we left well suited for the challenges that would come.

An Oasis in my day. 

I need more.