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.


I'm OK.

Tuesday, July 22, 2014


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."


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."

Friday, July 18, 2014

Exclusion: It Hurts

Part Three

After the pre-show everyone who had bought premium seating returned to their ticketed seats while the people waiting in the lobby streamed into the theatre. Ruby and Sadie sat in the raised chairs beside me, Joe in the row in front. We watched as the theatre filled from the front. As it was to be an interactive show everyone wanted to be as close as possible. The theatre was not full and this meant that when everyone was seated we were in the back corner, as far back as you could be, and the next four or five rows, right straight across the theatre were empty and all the seats in front of that were full. I said to Joe that it looked like we were being punished. And, in effect, we were being punished for needing to use accessible seating and for the accessible seating being in the very back row.

I was concerned that Ruby and Sadie wouldn't have a fair chance to be picked to go up on stage as I knew they both wanted to be. I spoke to a woman, I think she was an usher, and asked if the performers on stage would even know we were back there as the kids wanted a chance to go on stage too. I couldn't believe the rudeness of her tone as she said, "Then they need to jump up and wave just like all the other kids." She stomped off. Ruby and Sadie were not like all the other kids. The reason? Because they were sitting with a wheelchair user in the very back row, farthest from the stage. Even if they did cartwheels the likelihood of their being seen was zip.

I knew the woman was upset because, or I assume it was because, she thought I was asking for special privileges for Ruby and Sadie. I wasn't. I really wasn't. I was asking for equal consideration. That's all. I knew that our seating took them out of consideration for any possible participation in the show itself.

I spoke to another woman, this one in a suit. She told me that very few of the children would be given a chance to go on stage during the show so that they all had a slim chance. I pointed out that this was exactly what I wanted. Right now every other kid had a slim chance while Ruby and Sadie because of our seating had NO chance. She said she would speak to someone from the show about my concern.

When she came back by me I called out to thank her, she ignored me, I thought she hadn't heard. I spoke again, she near shouted at me, "I haven't spoken to her yet!" I didn't who who 'her' was but I knew I was seen as a problem. I hadn't kicked up a fuss, I had only quietly asked that the kids get the same chance as everyone else. I didn't want them excluded because of where we were. This simple request was met with rudeness and with dismissiveness. No one actually cared enough to see my point. More than that I was made to feel like a bother for doing some quiet respectful advocacy.

The show began. A couple performers with puppets did come all the way back for Ruby and Sadie, I don't know if this was because of my request or because they simply saw us across the barrier of empty seats when they were coming up the aisle. When it came time to call children up, the host, predictably called from the seats closest to the front. At no point, not even once, did she look up to where we were seated. Not once. We were invisible to her.

This is what Ruby noticed.

She and Sadie both jumped up and waved to be picked.

But it was fruitless.

They couldn't be seen.

They were out of contention.

And it was noticed.

When it was over Ruby was really disappointed. NOT because she didn't get to go up on stage, but because there hadn't even been the slightest chance that she'd be picked. As I was giving her a ride home, she said to me quietly, about the host, "She didn't even look up where we were." She felt that exclusion, deeply, and was hurt by it.

Me, I was angry.

At the situation.

And at myself - it's hard not to be self loathing or self blaming in these moments. My need of accessibility had hurt a child that I loved. My needs had made it impossible for her needs to be met. As much as I knew none of this had been my fault, as much as I had tried to advocate for equal consideration, it didn't matter. For a few seconds, or maybe a minute, I hated being me and I hated being disabled and I hated needing what I needed.

I reviewed in my mind the facts: I hadn't asked for them to be picked, I'd asked for our situation to be understood. We took the only seats we could, we paid top dollar for them, and we were punished and excluded primarily because I had needed accessible seating. Those facts brought me back to my senses. I pushed the self anger away. It took a solid shove to do it, but I did it.

As we rode along I talked about the good things about the show and talked about how much we laughed. I wanted to try and make it all better. I could have my own thoughts, I just wanted a happy child in my arms. Ruby cheered up as we talked.

But she knew what I was doing.

We got home and she turned and said to me, "It wasn't fair. It's supposed to be fair."

It is supposed to be fair.

Isn't it?

Thursday, July 17, 2014

The Opposite of Welcome: In Retreat

Part Two

We arrive, as instructed, an hour early. The show starts at 11 but those with premium seats need to be there at 10. We go in and I pull in to the accessible seat while Joe along with Ruby and Sadie continue on down to take a seat, as instructed, at the front of the theatre. For the 'pre show' people aren't to sit in their assigned seats, they are just to cram as close to the front as possible so they can easily see and so that they can be taken, row by row, up on to the stage to meet a big dinosaur, have their picture taken and then stop and visit a baby dino before exiting the stage. I see where they all sit but then they are lost in the throng.

A nice fellow in a nice suit approaches me and tells me that I can go down to the front and take pictures if I'd like. He tells me that there is plenty of room for me to park and watch when the kids go up. I thank him and head down. I forget, momentarily, that non-disabled people seldom actually understand space. When I get down, a young woman who is there, I guess to make sure it all runs smoothly looks at me with, lets say, the opposite of welcome. I tell her that I was told that I could come down to take pictures.

I try one spot and she points out the obvious, I'll block people coming down the stairs. Then I move to the only other spot and she points out, again, the obvious but now her voice is sharper, I'll block people getting back into the row they are temporarily sitting in. "There's no room for you!" she said, loudly and harshly meaning, "get out of here." I can't turn around because there really isn't room. This means that I have to back up all the way to the rear of the theatre. The aisle isn't really wide, that's problem one. I don't have mirrors or anything that give me a good rear view, that's problem two. My chair has less power in reverse and really doesn't like backing up hill, that's problem three. People, also with premium seating, are rushing down the aisle so they can get a spot near the front so they too can get up on the stage, my slow retreat is slowing them up, that's problem four.

Some of the people are panicking because they are a little bit late and they want to ensure that they get up to the front for their premium seats, this means they don't engage in premium behaviour. I hear some complaining as I slowly back past them while they stood off to the side. One woman, as soon as she thought she and her kids could clear me rushes out, turns sharply and her purse, white with hard, sharp corners, pastes me right on the side of my face. I neither received or expected apology.

Even so, all the way back I am apologizing, "sorry, sorry, sorry, sorry, sorry, sorry" many say, 'that's OK, take your time,' but those that don't really don't. They're mad. But mad or gracious doesn't much matter to me, what matters is that I feel exposed, I feel centred out, I am these things always because of who I am and how I move, but when situation adds to it - I'm mortified.

After a tortuous climb backwards, I get to my seat and slide back in. I looked up and saw that Joe and Ruby and Sadie were standing on stage and they were the next up to go meet the big dinosaur. I was pleased that I didn't miss it.

But I'm already tired, and the show hasn't started. Soon the pre-show is finished and people disburse back to their ticketed seats. Ruby and Sadie were excited about being up on stage. I let their excitement fuel my own enthusiasm and, suddenly, feel a little less tired.