Saturday, April 20, 2019

Signs

I've said it myself, many times. So please don't take offense when I enter this into discussion. I used to imagine, when I first became a wheelchair user, what kind of message I needed on the back of my chair so as not to be grabbed or forced to receive assistance. The ideas funny, the execution, never happened. I don't want a sign on the back of my chair. I'm a private citizen, not a billboard. And I notice when I bring up the topic of being assaulted, being grabbed, being manipulated, people come up with ideas for signs for the back of my chair. I get it I do.

Or I did get it.

I don't now.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

When that man came at me from behind. He startled me. He forced his help on me. HE GRABBED ME! In full view of lots and lots of people. I assure you that if I saw someone coming up behind another person with the intent to grab, I'd call out. I'd yell "STOP!" I think others would too.

But no one did.

In fact they smiled at him.

Saw him as generous.

Saw my angry outburst as 'the problem.'

And when we come to discuss it, out comes our sense of humour, our comes our suggestions for what I should do differently to stop this.

I SHOULDN'T HAVE TO DO ANYTHING DIFFERENTLY TO BE LEFT ALONE FREE OF ASSAULT!!

It's not because what my wheelchair is or is not wearing!!

But ...

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

In the car afterwards Joe and I did exactly what many readers did. Joke about what I could put on the back of my chair to stop people.

But.

Realization.

I don't want to wear a sign.

I want the usual signs of respect that non disabled people take for granted.

You know, like not being assaulted, in full view of many, in daylight hours, outside a grocery store.

Friday, April 19, 2019

Parking Lot Realization

You know this story.

But I need to tell it again anyways.

You see I realized something.

We parked at the grocery store and I got out. Joe was gathering bags and lists and stuff and I headed off to the store myself. I got to the curb in front of the store, paused, and began to push up. It's difficult for the first few seconds because of the steepness of the grade and because of the bumps that need getting over. But I was doing it. He came at me from straight behind me. I didn't see him. There were lots of people going into the store, lots of people around. Then I felt him. My chair was grabbed, he started pushing. Not a word had been said. I screamed, I don't usually scream, "Stop." Now everyone was watching. "LEAVE ME ALONE, DON'T TOUCH ME!!!" He started to stammer about helping, "LEAVE ME ALONE!" People looked at me as if I was rabid, people looked at him with a 'poor you' look. I pushed myself into the store.

Joe, who had heard the commotion, came and started to apologize for not being able to stop him. I was left feeling like an asshole, someone who made a scene, primarily because people were glaring at me. Glaring. And then it hit me.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

Now that I've calmed down and looked at my reaction. I think any other person who had someone sneak up from behind and grab them would have reacted fairly similarly. The only difference being that no one would dare to do this is broad daylight. I believe that if it had happened to someone else, the police would have been called, and people would have offered some kind of comfort.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

Under the guise of helping we can be grabbed, pushed, forced; we can be stripped, force fed, confined; we can have our bodies touched, we can have our voices put in restraint, we can have our protests met with punishment.

Helping.

Just helping.

Assaulting disable people is acceptable.

Disabled people reacting to assault is not.

Thursday, April 18, 2019

A Voice, A Visit

Yesterday morning, I awoke, could feel Joe stirring beside me, so I wished him a good morning. We both paused. My voice was back. I'm almost crying at the writing of this. You see I came out of the hospital with a new voice. A weak, soft voice, full of holes, the kind of voice that comes from sickness and ill health, it was a voice with no strength, no power. It has a hospital voice suited to choosing jello or ice cream to nurses straining to hear.

But yesterday morning, my voice, my real voice, came for a visit. I sounded strong, my voice had power and intonation and seemed desperate to tell a story. It was a remarkable difference. I had wondered if it had gone forever. I wondered if I was to be forever mourning its loss.

But no, it was resting too.

It didn't make the whole day. It lasted until early afternoon. Which I thought was a good long time for a visit. It's back again this morning.

It's early but I want to rush out and try it on someone.

But I won't.

I'll be able to use it at work.

There are so many things that illness takes from you. There are so many things lost. But some come back.

Thank heaven's one of those has been my voice.

It's not a pretty voice, or a classy voice, but it's been a strong voice when I've needed one.

And again this morning, it's home.

Wednesday, April 10, 2019

Way It Should Be

We've been at the mall a little more these days. It's one of the few places where I can get some exercise without pushing myself to hard. When we go on weekends, we often stop and have lunch in the food court. I pretty much always go to the same place. The food is good. There are lots of vegetarian options. The people who work their are nice.

So what usually happens is that Joe goes to order his food at one of the other places, he has several favourites, and then when I see him in line, having chosen where to go for lunch. I go to my place. We time it so that I order and pay and then Joe goes to pick it up. It's a routine now, they know both of us. It works well.

A couple of visits ago, Joe decided to eat at the same place so we placed our order with the fellow who runs the place, the same guy I usually order from and give my money to. He looked at the two of us and asked, "Are you brothers?"

Joe and I look nothing alike. Even so we often get this question. I think people see that there is a relationship, a bond, between us and then they try to figure out what that might be. For some reason, they never, ever, think that we are married, or even dating.

The question threw me. I like this place and I like the food. But I wasn't sure what their attitude would be if they had to contend with the actual nature of our relationship. I didn't have time to decide anything. Joe answered quickly, "Hell no, we aren't brothers, we're married, he's my husband."

There was a moment of shock on the faces of those behind the counter and those in the line behind us. It was like they reacted in several ways.

Oh, they're gay.

Oh, the fat disabled gay is in a romantic sexual relationship.

Oh, I don't want to picture that.

But. And here's the 'but' that mattered. Nothing changed. I've been back since. No change. Same welcome. Same sense of ease.

That's the way it should be.

But often isn't.

Tuesday, April 09, 2019

Need

I need so much more from people right now.

One of those things is something I've written about a lot.

I need to be let alone, to be allowed to just get on with my day, to be relieved of the burden of inspiration, to be just another anonymous person in the community. I need to be let alone.

I'm tired.

All the time.

Tired.

The doctor, my blood tests in his hand, assures me that I'm on the right track, that I'm getting better, but that it will be slow. My tiredness isn't going to go away any time soon.

So.

I'm tired.

Just being wears me out.

Doing is another thing entirely.

So.

I'm pushing from the car park to the mall entrance. At the edge of the parking lot the sidewalk slopes upwards to the door. Only a couple weeks ago I pushed up this with no effort at all. Flew up. But now, it's work. I can do it. But it's work.

I'm pushing up, the effort is showing.

My heard is glad, I know I'm going to make it.

Now, suddenly, I'm fighting off help.

DON'T TAKE THIS FROM ME!!!

I NEED THIS!!!

I'm called rude.

I'm not.

I'm just tired.

And I want to get better.

I don't have time to caretake the feelings of those who need me for their own purposes.

I don't want to speak sharply.

But what other way do I have to communicate that in this situation, MY NEED MATTERS MORE.

I am not your teacher.

I am not your random act of kindness.

I am not her for you.

I made it to the top. Victorious.

This was something I had to do to remind myself that I am coming back to me. I'm coming back to strength. I'm coming back to independence. I'm coming back.

Back.

Monday, April 08, 2019

An Odd Conversation

The oddest conversation.

I am sitting in my office at work and a fellow with an intellectual disability pops in and says that he'd heard that I'd been sick. I told him that I had been. He said that he'd heard that I'd been very sick. I told him that was true that I had indeed been very sick. He told me that he was happy that I was well enough to be back at work. I thanked him. Then he said, and I quote, "Just remember, getting sick isn't your fault, everyone gets sick." I asked him what he meant by that, "All people get sick, not just disabled people, all people." I nodded and he left my office. Message delivered.

I hadn't actually thought that getting sick was my fault. Never crossed my mind once. Not once. But since that discussion I've discovered that not everyone felt that way. Any number of people were convinced that my illness had something to do with my disability. In fact, I'm afraid to say that I've discovered most people had made a connection when none existed. In discovering this, I also found that, in some way, people were making this the result of my disability and that in there somewhere was a personal kind of blame.

Not everything that happens to me happens to me because I have a disability. Not everything is related to my wheelchair or my difficulty with walking. Not everything about me has "dis-" preceding it. And that includes my vulnerability to illnesses. I do not believe that bacteria have an address book listing those people who are 'just' targets of their violence.

Yes, I got sick.

Yes, it was serious.

No, it wasn't because of my disability.

No, it wasn't my fault.

I shouldn't have to say any of these things. But I do, and will over and over again. I have spent my entire working life, my entire life as a disabled person try to establish the uniqueness of the disability experience as it's encapsulated within the commonality of the human experience.

All people get sick.

It was an odd conversation with an important message.

I hope to see him soon and thank him.

He taught me.




Saturday, April 06, 2019

Maybe Too Much Information

If on the odd chance you have the opportunity to walk by the bedroom of a couple that's been together for over 40 years and you hear gulps of pleasure emanating from the room. 8 out of ten times on the other side of the door, they're scratching each other's backs. Yeah. Man. Sex is awesome but that itch that's just out of reach - priceless.

Stop here if you are afraid of too much information.

I just want to make a point.

A lot of what I've gone through has been painful. My body hurts as it heals.

That pain.

Constant.

The body.

It's cause.

Or that's how you see it.

But last night in bed, Joe scratched my back and got that sweet sweet spot. My whole body tingled with pleasure.

It felt good.

To feel pleasure.

In my body.

To be reminded.

Of the gifts it can give.

I fell asleep with the hope that the morning bring more pleasure and less pain. It's nice to think that way, like the whole thing might be possible.