Thursday, January 19, 2017

My Problem

I have a problem.

I think I've had it for quite a while, but I don't think I've really acknowledged it to myself or to anyone else until now. Let me give you a three examples and then I think you'll understand.

We are having a 'see you soon' gathering at my next team meeting for someone going on leave for a few months. I am in the liquor store picking up a couple bottles of wine, not to consume at work of course, but as gifts. I'm pushing myself carefully not wanting to knock over display towers. A passerby makes a comment about using benefit dollars to buy booze and about how he, as a taxpayer, resents my use of my money in that way. I spring to my own defence and say that I am fully employed and that I am, like him, a taxpayer.

Sitting in a food court holding the table for Joe. He eats much more slowly than I do so he gets his food first and then I get mine. I still finish first but there's not as much of a gap. Anyways, I'm waiting. Another anonymous comment comes my way about being fat and lazy and in a wheelchair, about how I let everyone serve me and the burden I've become. Apparently if I rise up and walk, I'll become thin, productive and those around me won't secretly wish I'm dead. I immediately make it clear that I push myself where ever I go and I participate actively in all my relationships.

It always surprises me when I'm out with Joe, Ruby and Sadie that sometimes people see only me and not me in relationship to the people I'm with. We were all, together, in a line up, getting tickets to a movie, and a comment is made about how sad it must be to be alone all the time. I rear up and say, quietly because I don't want the kids to be involved in another scene, that I'm not alone and that I'm with the people I'm with and, for God's sake, shut up.

You see the problem don't you?

In my mind I'm going after ableist and disphobic assumptions about people with disabilities. In my mind I'm educating people about who people with disabilities are and the lives we lead.

But that's not what I'm doing is it?

Every defence that I use, buys into their measuring stick about what it is to be a person of value.

I work. Okay, big whoop-de-do for me. My response says that I agree with how they determine who should spend what on what and that I have the right to spend my money the way I want because I earn it. Well, I don't agree. I don't think it's anyone's business to tell anyone else how they should spend the money they have no matter how it comes their way. So while challenging stereotype I'm reinforcing hierarchy.

I can physically push my chair. Okay, hold a parade in my honour. My response says that there are lazy people with disabilities but that I'm not one of them. I don't belong to THAT CLASS of disabled people. I am physically strong enough and have the dexterity to be able to push myself, at my weight, in my chair. Well, I don't think that 'lazy' is why people are in wheelchairs. I think that's a stupid notion and my response should tackle that, not reinforce it.

I am married and have relationships. Okay, ain't I special? My response says that there's something about me that makes me able to have relationships and that by having relationships, I have more value. Well, shit on that. I know people with disabilities that for a variety of reasons are not in sexual relationships and have little in the way of social relationships. Leaving out a discussion of why that may be, the question is, does that make them less worthy of respect? No. It doesn't.

I don't know why I want the respect of people who are ignorant or mean towards me. I don't know why I feel a need to protect myself by saying 'I'm not one of those kind of disabled people, you know the kind that don't deserve respect and welcome.' My inner disphobic self maybe peeks out at moments like that.

But, and this is not a defence, I don't know how to respond any other way. I don't want a discussion with someone who said something with the purpose of hurting and degrading me. But I also don't want to justify, in my response, their measure of value and of worth and of humanity.

I have a problem.

Wednesday, January 18, 2017

The Bump and I

Tomorrow my power chair comes back. I am conflicted. Not by the 900 dollar repair bill, which was enough to knock the wind out of me, but by the fact that I'm wondering about how to incorporate it back into my life. This stands in stark contrast as to how I felt when they took it into the shop. Then I almost mourned its loss in my life. Everything suddenly seemed either harder or impossible.

But then, as disabled people do expertly, I adapted. But oddly, I didn't just adapt, I thrived. I pushed longer and longer distances and began to conquer steeper and longer ramps. I began liking the strength in my arms and the delicious sense of tiredness that came from really hard physical work. After a few weeks, I didn't much miss the chair.This was helped by the fact that the weather was really cold out and the WheelTrans buses were warm inside.

So yesterday Joe and I talked about the chair and it's return. I think I might have surprised him when I said that I wanted to use it, but use it less. I picked out some places where we've had to do a lot of organizing with rides and where there 'push potential' is small. Those places, where we go to a lot, I'll use the power chair. But places where the 'push potential' is significant, where we also go a lot, I'd like to stick with the buses and my manual chair.

I realized that I have relied on my power chair more than I needed to. It's easy, it's quick and it's fast, but it also takes away from me my ability to do things for myself and my potential for growth. Just the other day I forgot that I couldn't do something and therefore, I did it. It took me by surprise when I realized what had happened. The only reason that it happened was because, physically, my arms are stronger, my body is more flexible and I have more confidence in trying things previously out of reach.

900$ is a lot of money. I'm still shocked at the cost. But overall, I'm glad this happened. I'm glad that I was forced to adapt and change. What I thought was going to be a catastrophic event was only a bump in the road, a bump I now have the strength to get over.


Sunday, January 15, 2017

Invalid

Because the word 'invalid' sounds different when it references an argument or a point someone is making than it does when referring to people with disabilities. That little bit of difference makes it sound like it's two different words with two different spellings, it isn't. I'm not going to go off on a rant about the use of the word 'invalid' in language, I practically never hear it used in reference to disability any more, even the dictionary says is archaic and it's offensive. 

What I want to talk about is those moments in life where I feel like I'm simply invalid - using the meaning of 'not valid'. A really small moment happened in a store where Joe and I were making a deposit on our retirement plan and picking up lottery tickets. I had rolled in, I was making the order, Joe was standing in front of me simply watching the ticket seller punch buttons. After buying the 'machine tickets' I also wanted to pick up some scratch tickets, the maybe a vacation this year tickets. But when I said, "I'll get some scratch tickets now," the man completely ignored me, I wasn't there. He totalled the tickets bought thus far and looked to Joe for the money. All this as if I was invalid - as in having no part to play in this transaction.

I spoke up saying, "I'm buying the tickets, not him, please listen to me." His wife, who works in the store with him heard the tone of my voice and rushed over. He was now flustered and was pulling trays of tickets out and shoving them at me. I hadn't yet told him which ticket types we wanted. I had to wait for the flurry of activity to die down, I then told him which tickets I wanted and he put back two trays and held out a third, to Joe, as if I wasn't there. As if I was invalid - as in an argument serving no purpose.

Again I directed him that I was picking the tickets and he shoved them at me, I was upset, so was he, but I picked and paid for the tickets. On the way out I told Joe that we would never purchase there again. Joe simply nodded, he got it.

Invalid.

It's a word that means 'of no consequence' ... 'wrong' ... 'incorrect' ... maybe it's a word that also describes the feeling that we have,sometimes as disabled people.

Maybe that's why, on occasion I have a deep, deep yearning for validation.

Maybe that's what we can all do for each other.

Saturday, January 14, 2017

= equals =

"It's nice," I said, "because I thought that being without the power chair would decrease my independence and in fact it's increased it." I was talking to someone about the fact that, with my power chair in the shop, I had expected to do less, to go to fewer places, to have my life significantly impacted. Well, I was wrong on many counts. It is very true that it takes way more work to simply 'be' where I want to be. Booking  WheelTrans to go a couple of blocks over to the nearest mall takes time but it also took effort to get over the guilt of going somewhere that close. I apologize, even now, to every driver. They are all very clear on the fact that the service exists to get me from place to place no matter where that is.

It's also a lot more work because I am pushing myself where I would have normally have simply motored along. But even there I'm using this as a challenge and my strength is increasing my ability to do ramps and to go long distances is also on the rise. I just finished, as an example, a 1.3 km lap around a mall in less than 40 minutes. For me, this is extraordinary. But, back to the conversation.

I gave as an example of my increased independence a moment when Joe said a version of, "OK, I'm going to go over here to do this, why don't you go over there to do that, and we'll meet at Tim's for a tea afterwards." Now this was a situation where before, in my manual chair, we would not have been able to split up and I would not have been able to push myself over to where I needed to go, do what I needed to do and get back to the coffee shop afterwards. It felt good that Joe was confident that he could make that particular suggestion.

Here's where the conversation took me by surprise. The person I was speaking to said, "So,it's becoming more of a relationship of equals then?" I spluttered about in giving an answer primarily because I had never thought, at any point in our relationship, even in the early days, that we weren't a relationship of equals. I'd not equated my status as a disabled person either lessened me nor elevated Joe in any way. We've always worked as a team and at no point has that changed.

It made me think about how people see disability. Every single person with a disability adapts to their life as a disabled person in a whole variety of ways. Every single person with a disability can contribute to any relationship that they are in in a whole other bunch of ways. Human relationships and the capacities for humans to give to one another simply aren't affected by, well, anything. While its true that people can and do value their relationships with disabled people differently but that's a choice, not a natural result of disability.

Over time Joe and I have relied on one another, sometimes more in one direction than another, sometimes the reverse is true. Like any relationship there are ebbs and flows in regards to who needs what and who gives what. If you want to look more specifically at the course of our relationship during the time period of my disability. There have been ebbs and flow there. At first Joe had to do everything pretty much to support me, but then I was learning how to be disabled and how to reestablish a relationship with my body and the abilities that were possible. Years later, I still need help, true. But do you honestly believe that Joe hasn't needed me, even once, over a 10 year period? Do you honestly believe that my very visible needs have invalidated our sense of equality? 

So, no.

I don't believe that 'now there is a greater sense of equality' and I don't accept that if I learn to do something else or require less help in a certain area of my life, I gain equality, I do gain, but not a sense of being 'more' in a relationship where there has never been a person with more and a person with less.

Cause human beings have the ability, through all of their lives, to connect and where there is connection there is equality.

Friday, January 13, 2017

My Mom or My Battles

People thought him funny. And because they thought him funny, they laughed at him. All he had tried to do was to be assertive and stand his ground. In fact, he had done that, but in doing so he made himself ridiculous in the eyes of pretty much everyone around.

What had happened was pretty simple. It's something we've all experienced but I'll bet that it happens with more frequency and with open intent to people with disabilities. He was standing in line, he was aware of the stares and the curiosity his very presence caused. Being disabled in public is always cause for bored eyes to light up and to burn a hole into out self worth. He had Williams Syndrome, for those of you who want to know, but any difference would do. A fellow, the suit and tie type, stepped in front of him when he was clearly next to be served.

Then.

He spoke up. (Good for him.) He protested. (Good for him.) He recognized that he had a right to his place in line and a right to be served when it was his turn. (Good for him.) He said, "Hey, it's my turn." (Good for him.) The fellow told him to be quiet and wait. (Asshat.) Then the man in line said, with fury, "I'm going to tell my mom on you and you'll be in big trouble." (Oh, no.) People burst out laughing. He was instantly humiliated. He left the line up, crying, his hand over his face.

"I'm going to tell my mom on you ..." Let's look at this statement. He's saying that since he wasn't listened to and since is simple protest wasn't enough, he was going to call in his mother who would fight his battle for him. "You'll be in big trouble ..." My mother is a powerful advocate and she will let you know precisely why what you did was wrong and how you discriminated against me.

I think what he said translates into, "My mother is my advocate, she speaks for me, she protects me."

Right up until he said he was going to report the man to his mother he did really well. He was appropriately assertive. He did what a lot of people, disabled or not, would not have done. He used his voice to protest how he was being treated. So he's got all the basics covered, he has a solid foundation for being his own advocate and using his own voice to deal with the world as the world deals with him.

He had so many options besides retreat, besides stating that the REAL ADVOCATE would deal with this situation. He didn't seem to have the skills to take the encounter one step beyond. He had three or four options available to him, all of which he has demonstrated that he could use. But he didn't.

His skills grew, but then, for some reason, they stopped growing.

"I speak for my child."

"I am my child's voice."

"My job is to advocate for the people in my care."

I worry more and more and more about the theft of the voices of people with intellectual disabilities by those who, while they have good motives, take what's not theirs.

And if you don't like what I've said, "I'll tell my mother on you."

I'm not saying that to mock the fellow with a disability but to demonstrate how that sounds coming from me. It's not a strategy, it's a set up for being teased, ridiculed and maybe even worse.

Thursday, January 12, 2017

"I" versus "He"

They arrived at the top of the ramp, started down, and then spotted me, racing down towards them, and pulled back to wait. The disabled access to the north mall means going under Bloor Street so there's a long ramp down and then a long ramp up. I enjoy this ramp because it's got hand rails on either side and it's set up so I can go really fast down one and then use the momentum to get up the bottom part of the other. After that I can just pull myself up to the top. So they watched me race down and then pull up. When I crested the top, where he had waited along with an assistant, he was grinning. He'd liked what he'd seen.

"Thanks for showing me how to do it!" he said. He was about to speak again but before he could, the worker with him said, "Do you wear gloves to help you, I didn't see?" I was about to answer when he spoke, his voice softly frustrated, "I was going to ask you what kind of gloves you are using ..." he'd obviously noticed my glove. Her voice entered again, "He's looking for a good set of gloves to use." His face closed down as she spoke.

I backed up, because I was just a little far ahead to be in a comfortable position for he and I to talk. He had spoken first, he had initiated the conversation, it was to him that I would speak. Besides I'm much more interested in 'I' than in 'he'. Once in position I showed him the gloves that I was using. "He's looking at getting biking gloves," she said leaning over him to look at the gloves. I said, to him, "I use these because they are good all weather, winter or summer, they have a good grip and they really protect my hands." He leaned over to look and she gently pushed him back so she could see better.

I didn't know what to do. It's his job to direct her support. I don't know the dynamic and I don't know what my speaking up would do. I don't know if it would endanger him. But I don't know what my silence would mean either. I simply don't know what to do. Except finish up the conversation.

He spoke from behind her head, she had bent down to get a look at them. "What brand are they?" I told him the brand and was relieved to have her stand back up so I could see him. Her voice again, "Where ..." He cut in, his voice a little stronger, "... did you get them?" I told him the store where I'd picked them up and told him I buy three or four at a time because I can't always find them.

"So am I going to see you racing down the ramp any time soon then?" I asked. He smiled and said, "I suppose it depends on ..." She began to speak again, cutting in. "Please," he said, "let me finish." It was not a request. She hushed. She didn't like it, but she hushed.

There's revolution and rebellion in him, once he makes friends with those, his life will begin to be his own again.

Wednesday, January 11, 2017

Fake Issues

Photo Description: a person, whose face cannot be seen, is wearing a white tee shirt with the words: WHY BE RACIST, SEXIST, HOMOPHOBIC OR TRANSPHOBIC WHEN YOU COULD JUST BE QUIET?

I am writing this post feeling cautious and I think that I'd like to begin to ask you to read it with caution as well. Please understand that I am not attacking and I do not wish to attack the teenager who made and wore the tee shirt in the picture. Further I think the kid who did this has his heart in the right place and, further, has the courage of his convictions and I think that's extraordinary. Even so I want to use the sentiment stated on the tee shirt to talk about a much larger issue.

Spending a little time reading the comments on this young man and the shirt he wore was really instructive. It again showed the incredible divide between those who decry 'political correctness' and those who felt that the young man had a real point to make. Some saw it as an attack on free speech and others saw it as advancing a more compassionate world. This is to be expected. In total I read over 300 comments about this shirt, its creator and the sentiment expressed. Not once did anyone say 'Hey, great shirt but maybe ableism or disphobia should have made the list. After all, the mocking of a disabled reporter and the recent beating on a man with an intellectual disability has been in the press a lot recently. But it didn't make a difference. When I posted a couple of comments regarding the oppression of people with disabilities, the replies to my comment included someone who said that the including "fake issues" would "water down the effect of the statement." Fake issues? Water down?

The constant erasure of the oppression faced by people with disabilities from public discourse is one of the most worrying aspects of  being involved in the fight for disability rights and the battle for full inclusion. The shirt is great, good for him, but the fact that no one sees an obvious omission is so disheartening. That people with disabilities face discrimination and violence and exclusion is well documented. That people with disabilities have a history of being erased which includes forced removal from public streets and public schools and public access by being thrown, against their will, into institutions where abuse reigned supreme, all done with the permission of those in society who had control and those in society who didn't wish us to live in our home neighbourhoods, is evidence enough of our status as outsider, and the degree to which we need to be on guard, our freedom is considered a gift not a right.

I recently looked at hate crime statistics regarding people with disabilities and found that, where that information is collected because we are included, it's going up. Pretty much everywhere. And there is no alarm, there is no warning bells going off, because people seem to refuse to admit or are wary of admitting that we face prejudice and violence and exclusion.

Watching the news here in Canada about Meryl Streep's speech at the Golden Globes caused me so much distress. On every news station where it was reported, with the exception of one, the clip of her speech began with 'violence begets violence...' and the context of where that statement came, the mocking of a disabled reporter, was clipped out. It wasn't seen as important that viewers saw the 'why' behind the statement. This was done in showing a speech where the press were called to a higher standard of reporting. Is that irony? I don't know I don't really understand what irony means. What I do know is that the wilful erasure of "disability" from minority status, from statements about oppression, from the mainstream media is concerning.

They took us out of society.

They welcomed us back reluctantly.

Now, they simply speak and act and live, like we don't exist.

The ultimate act of violence.