Friday, July 20, 2018

Phone Calls

So we're planning a trip, an actual vacation, and I'm getting myself familiar with the area from a visitor's perspective. I've been everywhere that I'm going before, but always for work, this time is for fun. Any of you who use mobility devices know that travel for fun is, quite simply, work. Websites still refuse to mention accessibility for the most part, or if they do it can be really hard to find, so I have to make a lot of phone calls. Let me present one of the calls to you.

Hi I'm calling to find out if your attraction is wheelchair accessible.

Yes, it is.

OK, to be clear, I'm actually in a wheelchair. Will I be able to get in all three of the attractions.

No.

Which one is wheelchair accessible.

Well, none.

Why did you say it was accessible?

Because I didn't want to make you sad.

And another:

Hi I'm calling to find out if your site is wheelchair accessible.

Yes.

So someone in a wheelchair can get in.

Yes.

You are sure.

Yes.

Can you list the attractions that I can actually get into and enjoy.

Well, there aren't any.

But you just said ...

... (cuts in) it's wheelchair accessible, you can roll around the attractions but you can't use them. But we sell our wheelchair customers a lower fare ticket because you can't use the attractions.

But I can watch.

Yes.

So you have a 'Voyeur" ticket price.

Well, I wouldn't say that.

You also didn't say that it wasn't accessible.

It is sir, you can get onto the grounds you just can't access the ...

(sound of me hanging up)

That, right there, those two calls, that took my energy for that day, today, I'll try some more places. I wish disabled not welcome places just say that on their websites, a little wheelchair person with a slash through it, this is my time that you are wasting.


Wednesday, July 18, 2018

Dust

From my eyes, the view is quite nice. I see my life clearly. I see purpose. I see love. I see meaning. From my eyes, I see straight ahead of me, I see the journey that I'm on, I see the battles to be fought, I see the joys to be had, I see moments of play, I see moments of frustration, and they are all headed my way. From my eyes my life is just my life. I'm lucky to be happy with it. From my eyes, I see what tasks were crafted for my hands only. What a privilege.

It startles me what so many other people see, when they see me. When they look into my eyes they don't see the reflection of journey to come, they see the reflection of something much different, much sadder, much lonelier. When they look at me they see a body and a chair. When they look at me they have their own narrative about what that means. They have assigned that image unshakable meaning.

"So sad that you are confined to a wheelchair, it must be so hard," said to me by someone who knew that I lived in Canada and that, at the moment, was in another country. That's not very confined. They had never left their state, not gone but 50 to 60 miles from where they grew up. But in their narrative, I'm confined. It suits them better for some strange reason. I try to explain the wheelchair as a vehicle for liberation. I meet dead eyes.

Watching a clip on Facebook of a young girl who is an astonishing gymnast. She has one leg and uses a prosthesis to enable her to participate. The narrative used to present her was that she hasn't let the prosthesis stop her from accomplishing her goal. I harrumphed at her story being stolen from her. The prosthesis exists to make her dreams possible. It does nothing to hold her back. Without it she'd not be doing what she does. Why is her journey and her story not see from her eyes.

What we see, as disabled people, when we see our lives, seems to stand in harsh contrast to what people see when they see our bodies, our disabilities, and enabling adaptations.

Part of the reason I write this blog is simply to remind myself that my journey is my journey and my life is my life. To remind myself that I don't live in the reflection of another's eyes, but I live in the world I see from mine. 

We have barriers, as disabled people, both attitudinal and structural, but we also face barriers when trying to tell our own stories, to have them heard and understood. We have been mythologized into sad creatures who do well to gather dust. As we fight for a world that's accessible we also have to fight to be seen, really seen, and to be heard, really heard, because it matters that we are real, vital, people who never, ever, ever, need dusting.

Tuesday, July 17, 2018

Feeling

After seeing that man with Down Syndrome take control of a situation wherein unwanted touch and belittling attention was plied on him, I left the situation feeling ...

and that was hard to say ...

... don't yell at me but I was inspired ...

... I was also really moved by his steadfast refusal to be the 'happy, huggy, Down Syndrome' guy they wanted him to be.

... I was impressed at the mere idea that someone had taught him these skills and ensured that he was able to use them in the real world.

All of those were true.

But that wasn't it. Deep down, that wasn't it. I sometimes have to go past my brain which tells me what I saw and assumes what I feel and get down into where my feelings generate.

I felt stronger.

That's it!

I felt stronger.

This is something I think we can do with each other as people in general and disabled people in particular. Seeing another's strength, hearing about it, makes us stronger, as an individual and as a community. You realize that that couple may never approach a person with Down Syndrome with the certainty of a 'hug outcome' again. Rah him He made his community stronger. He made my community stronger. And yes.

He made me stronger.

Tell stories of strength.

Create narratives of power.

Acknowledge reality but hammer it home when a triumph comes your way.

I need to hear it.

We all do.

Monday, July 16, 2018

A Man At Work

Just as we were finishing our lunch and I was popping the last of the burrito into my mouth, an employee came into wipe down the tables. He was quiet and unobtrusive and I didn't notice, either by his behaviour or the behaviour of others, that he had Down Syndrome. He just quietly and efficiently went from table to table to table.

Most of the customers seemed like regulars and took absolutely no notice of him. I can't emphasize the degree of welcome and acceptance that comes with anonymity in carrying out acts of everyday life. He was just doing his job. They just let him do his job. Several nodded to him, he nodded back, but that's as far as it went.

Then into the food court comes a young woman, with her boyfriend, who noticed him big time. Suddenly he was surrounded by patronizing, childish tones about what a good job he was doing and about how proud they were of him. He looked mortified ... not pleased to be centered out at all ... mortified. When the woman went to hug him he stopped her.

"No," he said, "I'm at work, you are a stranger."

She pressed on and he said, "No, I am a man. I am not a child."

They were, predictably offended. They told him that they were just being nice.

He said, and shock ran through my soul, "It doesn't feel nice, it feels disrespectful."

Then they were gone. During this whole thing, several in the food court turned to watch, it seemed like they all had his back, but they didn't interfere, they let him handle what came his way.

One of the women in the food court, one he had nodded to, fist bumped him on the way out.

Then he went back to his job.

Quietly.

Efficiently.

Sunday, July 15, 2018

My Burrito

While in Atlanta Joe and I went to a shopping mall. We wanted to see if we could pick up a few gifts to take home for the kids. As we wandered around we decided to head to the food court for lunch. We got there and there were only three or four vendors.

Joe decided on Chinese because they had a picture of a tofu dish that looked good. I had decided on a burrito that I would get from a different vendor. I waited with Joe as he placed his order. When he was done, the woman behind the counter said,, "That's two orders?"

Joe said, "No, it's just for me."

She became visibly upset, "What about him?"

Stunned by the question, he said nothing for a second and she launched in again. "What about him, doesn't he want an order too?"

I spoke up now and said that no I didn't want an order, I was going somewhere else to get something else.

When I spoke she literally seemed to jump out of her skin. Her eyes widened. It was like she'd seen either a ghost or a puppet speak unaided. Then, "So, that's two orders?" she said turning back to Joe and trying to understand what one person and one non-person would want for lunch.

I just gave up and told Joe I was going to go order my burrito, I rolled over the the Mexican place and placed my order with no difficulty at all. The guy let me choose without question or comment what I wanted wrapped inside. It was easy.

In his presence I felt fully human again.

I wonder if people realize that disabled people do have feelings and sensibilities in relationship to what happens around us. I can leave a situation feeling like my humanity, my personness, has been diminished or I can leave a situation feeling my humanity has been affirmed.

And yes.

Someone listening to me, without commentary, as I choose what I want in a burrito is enough to make me feel like a welcomed fellow human.

Disabled people don't ask for much.

But it seems hard for many to get the word 'people' after 'disabled.'

Thursday, July 12, 2018

Another Jump

Yesterday, a little later in the afternoon, we decided to pop into a grocery store to pick up some fruit. As to the heat, well, I've decided that I have to be a really good person and follow my faith because I surely would not cope with hell. I noticed a car pull by us driven by a man about 20 years our senior. His wife, around the same age as her husband, sat beside him. Their windows were up tight and you knew that the air conditioner was running full blast.

We found parking at a disabled bay and turned in. I saw the old guy pull his car up right in front of the store. Then he opened his door and got out. I thought, smiling to myself, that he was getting out to open the door for his wife and then he'd go park the car. He rounded the back of the car and headed into the store. I had to admit to disappointment. 

His wife opened her door and got her feet out but sat, in the blasting heat, with her feet on the pavement. She didn't seem rushed or hurried. Then her husband came out with a grocery cart. He walked up to her, turned the cart around, then helped her stand. She was using the grocery cart as a walker to steady herself. She kissed him on the cheek and then he came back round the car and got in and drove to park.

She walked slowly and steadily, holding on to the cart for support, into the grocery store.

I felt a bit ashamed for how quickly I judged him. I had in mind what I thought he should do, or would do, but I had no idea what he needed to to. They had worked out together a solution that works for them. He hadn't callously left her behind, he made it possible for them to be together and do things together.

See that conclusion floating in sea waters down amongst sharp rocks? Hear how it calls to me? Why the hell do I keep jumping?

Monday, July 09, 2018

4 scenes: 1 day

One:

We have rented a car that only a few months ago I would not have been able to get in. It's much taller and therefore it's a lot more difficult for me, but the thing is, difficult is okay today if yesterday was impossible. So I'm getting into the car and I get advice.

"I think you shouldn't have bought that car, it's too high for you."

Two:

I'm pushing into a movie theatre from a spot far, far away. All the disabled spots are taken, the lot is nearly full. Joe had offered to drop me off near the door but I thought I could use the exercise and we were in the middle of a conversation I wanted to finish. I'm pushing my way towards the theatre. It's hot. It's wet. It's like nature has draped a hot, wet, shawl around my shoulders. I'm sweating. I get some advice.

"I don't think you should be doing that, a man your size, it's too hot."

Three:

We stop at a grocery store to pick up some things for the trip. I've wandered away from Joe who is buying dish soap. I see something I want and I put it into the bag on the back of my wheelchair. I heard running, I get some advice.

"I don't think you should be doing that, shoplifting raises the cost of stuff for all of us. Put that back or I'll call the manager."

Four:

We go to dinner at a pub across the parking lot from where we are staying. We order, chat, eat, chat, then pay the bill and get ready to leave. Joe goes ahead of me and holds the door, a man bursts out and pushes Joe away, telling Joe that he'll hold the door. Joe is shocked and befuddled. As I go by he gives me advice.

"I don't think you should be out by yourself, what would you do if you needed help?"

Living with a disability = Living at the blunt end of other people's opinions.

Seriously.

Shut up.