Saturday, February 16, 2019

I'm Good With That

It lay there on the floor.

I was standing. I can stand. I can walk a bit. But I have to have something to steady me, a wall, a railing, and arm or shoulder. I had put my clothing in the laundry hamper and a receipt had fallen out of my pants pocket. It lay there, on the floor, looking like it needed to be picked up and put away.

I stood there and looked at it.

It's only been in recent months that I can reach down and pick something off the floor. I still have to be careful because of balance, but mostly, I can do it.

But I haven't had to do it for a very long time simply because I couldn't do it. In fact for nearly 13 years the floor and I have only had passing acquaintance. I could wave to it, to no effect because it never waved back, but that was it.

For years and years and years, I would simply let Joe know it was there and eventually, usually sooner than later, he'd pick it up and deal with it. He never minded, he was good with helping me where I needed help.

It's a complex thing being disabled. Because though I thought I wanted the skill of bending over and picking up things I'd dropped. It was really easy to simply let Joe do it. And 'easy' is something I can get used to.

I had a decision to make, pick it up, or leave it for Joe. If I didn't pick it up, he would never know that this was now about my laziness turning his help into servitude. He'd never know. But, shit, I would know.

I picked it up.

I'm no hero here, the reason I'm telling you isn't to point out how I made the right decision and Joe's day was lightened by a tiny little bit.

No.

I'm wondering if it happens with disability that habit destroys motivation. If it's just a habit that you help me with my shoes, then why would I be motivated to use the skill once I'd learned it. It's easy to live the easy life.

I remember working in a school tying the laces on the shoes of a little boy who simply let me do it. It wasn't until another staff told me he could do it that I realized that he had tricked me by my own need to be helpful and my own stereotype of what I thought he could do.

Teaching a skill and then giving the privilege of using it.

Discovering one's own personal power.

That's cool.

Very cool.

Joe won't know until he reads this that I had that little debate but I know when he does, I'll be picking shit off the floor for the rest of my life!

And ... I'm good with that.

Friday, February 15, 2019

One Word

There are times when powerlessness is the only sensible reaction.

Joe and I were watching a television program and just as it ended, building up to an emotional climax, one of the characters uses the 'R-word.' 

It's like a sucker punch, the whole of the ending is thrown off, our understanding of the characters involved is knocked off course, the time we've enjoyed watching the show is now thrown into question.

Powerlessness.

Nothing I can do will ever fix this.

We are left sitting feeling like we've been slapped by our own trust, the trust we'd given to the writers of the program.

Breathlessness. 

I'm told that I'm too sensitive in my reaction to that word.

I don't understand why I'm expected to be able to let purposeful hurt, purposeful hatred, roll off me.

And I don't know what to do.

 I know people who can be brought low by that word, can be torn up by that word, can be left bleeding by that word.

I know that their pain is real.

I know that their tears are wet.

And I don't know what to do.

I watch people forced to apologize for the language they use because the language they use is hateful.

But disabled people are expected to expect pain.

It's their just reward.

We have people sign pledges, but only good people who already know sign pledges, we need something bigger and louder and stronger.

But I don't know what that is.

This is a ramble.

And I'm sorry.

But sometimes I'm unguarded and sometimes I trust and sometimes I'm stunned by how quickly one word changes everything about a moment.

One word.

One powerful word, so powerful that it drinks up the power from all those who hear it.

So.

What do I do?

Talk to you.

Thanks.

Thursday, February 14, 2019

This Post Is Not About The Gym

Yesterday I gave my first lecture of 2019. I've had a long time off from travel, and even this was just an hour and bit away, it still counts. Hotel rooms, supper via delivery guy, room full of people looking at me. The longer I take off from lecturing, and this was the longest time ever, the more nervous I get about the whole thing. But I arrived at the hall, was greeted warmly on a really cold day, and as the hall filled I went about my rituals for calming down and right at the right moment I popped my anti-anxiety.

The audience was receptive and as I got going I realized, again, that I was enjoying being there, enjoying teaching, enjoying the questions that came my way. In a blink of an eye, it was lunch time.After Joe and I had eaten I said to him that I'd like to go to see the gym in the community center that we were in. We headed off and up and arrived there to look around.

It was packed with machinery and I rolled around looking at it. My own gym was having members fill out a form suggesting new machinery or other ways to improve the experience. They had come to me and told me about it in case I knew of other machines that had been made accessible. I thought I might get an idea. There wasn't any, not one, and I was surprised. I spoke to the guy there and asked if this was a city run gym in a community center or if it was like a Planet Fitness or something. He said it was run by the city.

I asked him, then, where the accessible machines were. He said they had one where the seat could be pulled out. It was over near a corner and though it was cool it was hardly enough for someone with a disability to bother. I asked him why there weren't options for people with disabilities, in a taxpayer funded place shouldn't all taxpayers have access.

Now, for those who wish I'd shut up about the gym and going to the gym, here's where the switch happens. The post isn't about the gym but about what he said in response to my question. So what did he say in answer to my question about why there weren't options for disabled people? In a firm tone, "This gym is for the general public."

I stopped still.

He looked back to see me no longer behind him in chatting distance.

"I am a member of the general public," I said.

He looked confused and started talking to me about some other place with the word 'ability' in it's name where I might be able to go.

What part of Community in 'Community Center' did he not understand? 

But, I had to get back and go on with my lecture.

He had flat out told me that  I don't belong, I am not welcome, I am not one of 'us' ... I am not part of the general public. I am something else that should go somewhere else.

Sometimes ableism and disphobia is so deeply ingrained that people don't even understand the impact of their words. They don't even understand the depth of their prejudice. The can say clearly, 'not you, not here' and still think they offer service to the general public.

There is work to be done.

So much work to be done.

Tuesday, February 12, 2019

Accessibility ...

Accessibility is Attitude because Attitude leads to Action because Action conquers Architecture.

Did I mention that I love alliteration?

Actually, I'm not at all trying to be cute. I believe every word of that sentence. Access comes from an attitude that believes that people with disabilities have a right to exist in all spaces and participate in any activity of their choosing. Existing in all spaces is still a wild dream for many of us with physical disabilities.

But this morning I was remembering how terrified that I was when I heard that my doctor's clinic was moving to a new building. I went and looked at the building and saw that it had one step up into the lobby. One step that left me sitting, outside, in my wheelchair. I liked my doctor, I liked feeling safe receiving healthcare, where was I going to find that again. When I mentioned the step to my doctor he simply said, "We haven't moved yet, and yes, you will continue to have access." I shouldn't have worried, I shouldn't have had to worry though either, but in truth I do, we all do, those of us who need adaptations.

A restaurant in Toronto, at it's own expense, builds an elaborate ramp so that disabled people can come up and enter the front door. They wanted to. They did. Sadly the restaurant lasted only a couple of years, but here's the thing. As soon as they moved, the ramp was taken down. The new place didn't think that we were a necessary part of the community and they showed it. In a museum about prejudice they show signs that deny entry to various racial and religious groups. It's a powerful reminder about attitude and access. But I suggest they need to put up at least one picture of a building with a single step in and see if visitors can guess what this image means. My guess is they won't. My guess is that few people even noticed that the ramp was gone. Except us, of course.

So if attitude can conquer architecture, why is it so difficult for it to create welcome. Getting in simply isn't enough. Once in can we expect that welcome naturally awaits. No, because attitudes also creates barriers. They can take space that is accessible and make it not so. At a whim. Without thought, they say, but they're lying. There is always intent when a table moves that blocks access to disabled people. Always.

I am writing this because I went into a store yesterday that is normally quite accessible and I was unable to get into the store because of how they had arranged items for a big 'sale'. I spoke to a manager who refused to see my point and then when she did, I was persistent, diminished it, "It's only for a couple of days."

Of course.

I'm sorry.

Was the response I didn't give.

I am writing this because I went into a clinic for an appointment yesterday. I was treated as a bother. I've never gone into a medical clinic where there was a space left open for a wheelchair user to park a chair. This place was overflowing with chairs, put there for those without the foresight to bring their own. I was a 'bother' ... chairs had to be moved, space had to be made, it was, for a moment like theatre as they acted out their annoyance to a group of people who seemed to agree, by their silent consent, that I didn't belong in that space.

Of course.

I'm sorry.

Was the response I didn't give.

Attitude can defeat architecture but it also can create barriers not built but that are built, brick by brick, out of privilege and prejudice.


Monday, February 11, 2019

Fear and Loathing

Acting scary and being scary are very different things. I noted this the other day when Joe and I went out for lunch. We'd finished our meal and decided to stroll around the mall window shopping, otherwise being described as 'between paydays'. I noticed a young woman of maybe about 14 sitting on a bench, rocking, flapping her arms, and making what I would describe as happy sounds. She seemed overwhelmed by happiness. A woman stood beside her, not in the least trying to stop her, but she was smiling broadly too.

Now, let me tell you what brought this little scene to my attention. It was the looks of horror and fear on the faces of others who rushed by them, as if they fled contagion. They feared her. I have always liked the term 'disphobia' because I think we, as a community, have never really addressed the deep fear and loathing that disability generates in a remarkably high number of alt-normal community members. This word says that much more profoundly that ableism in my mind.

Her presence, her manner, her sounds, her public presentation was evaluated through a lens of panic at who she was and what she represented and what they feared for themselves or their family.

People were afraid.

Later.

We stop at the food court for a cup of tea. His black, mine green.

At a table, two down, and three to the right. Sits a young teen woman, interestingly about the same age as the woman instilling fear into those who receive it openly. She is alone. She is pretty. She is quietly eating a burger.

No one fears her.

But, yet, moments ago she said something unbearably cruel to a girl who had been sitting with her. She said it loudly. She said it intending to be heard. The other girl fled the table in tears. I don't know where she went. She didn't come back.

Sometimes acting scary and being scary are very different things.

Sometimes acting scary is really just acting differently, and it's difference that's scary.

Disphobia, the weight of prejudice ladened by fear and loathing behind the word, is dangerous - they would have wished her away.

And scary people, those, most often, get a free ride.

Sunday, February 10, 2019

Ruby's Smile

The girls are staying with us this weekend. We have a routine we all like. It starts with Saturday morning hoping in the car and heading over to the center where I go to the gym and Joe and the Ruby and Sadie go to the pool. We're there for 2 hours. When we're done we go do something - movies, mall, games. This weekend we headed over to the community center near by us. They were having an after noon of making Valentine's crafts. We thought we'd pop in and see what was going on. We ended up staying right until they were cleaning up!

First up cards were made. I made Joe the first Valentine's card of our 50 years together. It would take too much explaining to go into why we don't celebrate Valentines so let's not go there. But we are firm believers that the girls get to make their own decisions about these things, there has to be room for their opinions and perceptions. Sometimes we just shut up. I admit, however, having fun making the card and watching the girls go at their crafts with abandon.

One of the activities was decorating cookies. The two choices were heart cookies or bear cookies. Ruby worked really hard on her cookies, making a cookie each for Joe and I and then for her mom and then finally for herself. Hers was a bear cookie. When it was done she brought it over to me and showed it to me. It was really well decorated, wearing pink overalls and heart shoes.

The first bite.

She looks at the bear and then me and said, "Ooops, now he'll need crutches."

The second bite.

"Now he's going to need a wheelchair. He can use a manual chair like yours."

The third bite.

"There can be a colostomy bag put in here," she points with a grin.

The fourth and fifth and sixth bite.

"He'll need a wheelchair like in 'the Upside,' that he can drive with his chin or," she thought, "he could have prosthetics."

The sixth bite.

"He's just a head now but he can tell whoever is pushing him where he wants to go."

The last bite.

"Bye bear."

I listened with fascination. She just kept coming up with the adaptations the bear would need after each bite. I was totally impressed with the range of her knowledge of what kinds of things people with disabilities need in order to continue to go about their business. Taken to the ridiculous, of course, she was playing around. But she was playing with knowledge of the subject. She never missed a beat in determining something that could be used or done for bear to slay mobile.

When she was done, I got naughty.

I said to her when she was done, "You know what that bear is going to say in about an hour and a half?"

She looked at me with that pre-teen look that said, go ahead but I know it's gonna be a groaner.

"What a poopy day I've had," I said and laughed. Because I never matured in that area and still find poop and fart humour hilarious.

She won't admit to it I'm sure.

But she did smile.

Saturday, February 09, 2019

Meaning? A story in which there is yelling

What does disability mean?

Sometimes nothing, nothing at all.

I think this may be the most surprising aspect of the disability experience. Sometimes it means something. Sometimes it doesn't. 

We went to the mall for lunch the other day. We like food courts. This court has tables designated for disabled patrons, they are a little taller so those using mobility devices and fit comfortably under them. 

When sitting at the table, having lunch, my knees well tucked away under the table I don't experience my disability at all.

Not. A. Bit.

I don't think, during those moments of my personal disability, I'm just eating and chatting and enjoying the 'je ne sais quoi' of the place.

But sometimes disability means a lot.

Like when we go to the mall and those table are taken, even though the disability symbol is right on the top, by other people, non-disabled people, who seem oblivious to the obvious sign on the table. They see us, with me in the wheelchair looking suspiciously like the symbol on the table. Well, a little more rounded than that person perhaps. And they don't move. Empty tables everywhere and they don't move.

Then, I feel disabled.

I can eat at the other tables but my chair doesn't fit comfortably under them so I have to sit all askew.

I feel disabled all through lunch.

Why don't I just ask them to move?

BECAUSE I'M OUT FOR LUNCH NOT FOR A FIGHT, NOT FOR THE EDUCATION OF OTHERS, AND I AM SURE AS HELL NOT THERE TO ADVANCE THE CAUSE ... I just want a crape!

Last week we were there and those tables were full and we began searching for a place that I could get to, which was hard because many were in the middle which meant wending around people and packages. One of the staff hired to clean up after everyone saw us looking. She stormed over to me, "You want a table?" she said without waiting for an answer, "follow me."

We did as we were told and when she got to the table she said, "So, all of you, look here!" she said loudly while pointing to the wheelchair symbol. It means "Get your privileged asses out of these chairs so the people that need them can use them. And DON'T YOU LET ME SEE YOU SITTING HERE AGAIN!"

We had lunch.

She was one of the best doctors I've ever had.

I didn't feel disabled any more. 


Thursday, February 07, 2019

Floored

So now that I'm a gym bunny, I've taken to writing down weights and reps so that I can keep track and push myself. It turned out that I had been going every week and doing the same thing thinking it was more. So writing it down helps. Today at the gym something very funny happened. I pulled the book with pen attached out of my wheelchair bag and in doing so dropped the pen to the ground. "Oh, shit," I thought, "I really want to record what I'm doing." I searched for another pen in my bag but it was a fruitless endeavour. I rolled back until I could see the pen. I turned the chair so I was beside the pen.

Now.

I have never been able, since I started using the wheelchair, been able to bend over sideways and touch the floor. I'd never even actually gotten close to the floor. But I leaned and as I did so I saw about 8 people in the gym come to a full stop. It was like they were frozen in time and space as their eyes were glued to my hand as I reached down. The further I went down I could feel them willing me to get the pen while fighting their own desire to run over and pick it up for me.

There was a gasp.

My fingers brushed the top of the pen and for a second we all thought, as we were all of one mind now, that I'd gotten it. But it rolled away from me a bit.

I leaned over further my fingers stretching to their fullest length and I managed to roll the pen back.

They were still with me, all of them and a couple more who stopped to see what they were looking at and then decided to stay. I don't normally like being watched but I didn't find their eyes intrusive, this was a gym, they all know about pushing to reach goals.

My goal was just a pen on the floor.

But it was goal enough.

For everyone.

Then, pen in place I leaned over, I could feel the stretch, my muscles moving, and I caught the pen between my forefinger and middle finger. I had it. I lifted it up. And it was over.

This all took only seconds but it felt like a long time.

But I have to say I admire those who were their, I could feel them silently cheering me on.

But what I admire more was the incredible resistance they showed. They held themselves back from helping. They exercised restraint, a muscle not so often used these days.

Everyone was all smiles after it was all over.

They wished me well.

And they showed it.

By letting me do well.