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.

Monday, July 21, 2014

The Rhythm of God's Heart

I was waiting, with the luggage, outside the hotel. Joe was getting the car and I was enjoying being outside in the warm sunshine. Then, she appeared beside me, taking the bench a little to my right. She looked at me and smiled. I smiled back and we both fell into silence.

Over the two days we were at the hotel I saw her quite regularly. She spent most of her time sitting in the lobby or out on the patio. She wore a thin white sweater over a lovely pink blouse and a dark pleated skirt. Whenever Joe and I appeared we felt her watching us. Not with hostility. Not with a deep curiosity. More like just a passing interest in those who also were staying at the hotel.

When she was out on the patio, I found her watching me as I got into the van. I don't much like being watching as I do these things and Joe knows how to easily step into someone's field of vision. I think she knew that we'd found her watching a little intrusive because when Joe moved, she was looking down and reading the Bible that she carried with her at all times. Sometimes it sat in her lap, others on the table beside her. She didn't read it often, it seemed a bit like an old friend just sharing silence with her.

I was startled when she spoke.

"That man, that nice looking man who helps you, is he a relative?"

"No, no, we aren't related," I said.

"Is he a paid companion, then?"

"No, no, he's not. He's my partner, we've been together for 45 years this year." I said not really knowing why I was adding that detail.

"Oh Good!" she said, clasping her hands together in delight the way Granny does in the Sylvester and Tweety cartoons.

"Really?" I asked.

"Oh,yes. I admit I thought you were a couple. You are so kind to each other. I'm so pleased." Her hands fell back on her Bible.

"I must say you've surprised me," I said.

She looked down at the book in her lap and said, "Were you surprised because of my Bible?"

"Frankly, yes," I said.

"I discovered long ago that I had to read the words to the rhythm of God's heart, for me, that is the path to understanding."

She saw the tears in my eyes and reached out and patted my hand.

We returned to silence. When she saw the van pulling up she rose and said, "I'll give you your privacy now." And she was gone, leaving the scent of blessing in the air.

Sunday, July 20, 2014

Confusion Reigns

There were about 8 doors into the place. I checked, none had an auto opener. OK, it's difficult but I can get through these doors. My right hand is fully engaged with the controls of the chair, so I need to use my left hand on a right handed door. The steps to get through:

1) With my left hand, take hold of door handle.

2) back up at the same time as pulling the door open.

3) when the door is open as wide as possible, quickly switch left hand from outside handle to bracing the door from the inside.

4) slowly turn chair round

5) back up through the open door, continue to hold door wide open

6) when through let the door slowly close after you, holding it until it's shut.

There were two doors to get through, the second was a little harder than the outside one because there was less space. But I didn't panic, I just slowly did it again. I entered into the lobby backwards. There was a young fellow standing there, having watched the whole process. 

"You are pretty good at that," he said, impressed.

I asked him, nicely, what he was doing at the door.

He tells me it's his job to help people with strollers or with arms full of bags through the door. "I only do this on Saturdays, it our busiest day."

"Your job is to help people with the doors?"

"We are going to get those buttons," he said correctly assuming that I'd know what buttons he meant, "but until then this is what I do for my sift on Saturday."

"And you watched me come in slowly and come in backwards."

"Yeah, it was cool how you did that."

"It never crossed your mind to give me a hand?"

"No, you seemed to have it under control."

"Oh."

I still don't know how to think of this. I did have it under control. I did want help. I'm impressed he didn't just rush to help, but thought he should offer. I didn't like him standing and watching me get through the door as if he was watching a reality show clip.

I don't want help when I don't need it.

I say that all the time.

But sometimes I guess I do.

I'm confused.

Saturday, July 19, 2014

No Means Force

We were grabbing a bite of lunch at a small cafe, in a mall, right across from a booth that sold jewelry and where ears could be pierced for a fee. A mother approaches with a little girl of six or seven years old. The little girl is clearly stating that she doesn't want her ears pierced, that's she's afraid of how much it will hurt, that she doesn't like earrings much in the first place. Her protests, her clear 'no' is simply not heard. The mother and two other women, who work the booth, begin chatting and trying to engage the little girl in picking out a pair of earrings. She has to wear a particular kind when the piercing is first done but she could pick out a fun pair for later.

"I don't want my ears pierced."

"I don't want any earrings."

The three adults glance at each other conspiratorially and now the pressure really begins. She will look so nice, all the other girls she knows wear earrings, the pain isn't bad.

She, the child, sees what's coming and starts crying. As the adults up the volume so does she, she's crying and emitting a low wail at the same time. "I DON'T WANT MY EARS PIERCED."

Her mother leans down and speaks to her, quietly but strongly, the only words we could hear were '... embarrassing me.'

We heard, then, two small screams, when the ears were pierced.

Little children learn early and often that 'no doesn't mean no.'

Little children learn early that no one will stand with them, even the two old men looking horrified at the events from the cafeteria.

Little girls learn early and often that their will is not their own.

No means no, yeah, right.

Most often, for kids and others without power, ''no means force."