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.

Tuesday, January 10, 2017

Something and Nothing

Sunday was a big day for me. As many of you know, my power wheelchair has been in the shop for several weeks now and as a result I've been pushing myself a lot more than I normally would during the holiday season. We've tried not to let the break down slow down what we would normally do. So between WheelTrans and my arms, we've managed to keep the exact same pace as we would have typically managed.

I've put a lot of distance on my arms and back, no question.

So the mall closest to us takes the bus about 3 minutes to get to. I always apologize and explain about my power chair break down and the drivers always say that their service exists for just that reason. I still feel guilty about it, but guilt shmilt I used the service anyway. So I learned on my first trip there that I could manage all the ramps that had hand rails on either side of the ramp. I had the strength to pull myself up with no difficulty at all. That was good.

The other ramps, without hand rails, even though it was hard work, I could manage it. It felt good and I felt strong. But, I knew, that I had been successful because I'd been selective. There is one ramp, on the main floor, just after coming into the building, that I avoided. It's steep. It's longish. It has only one handrail on the left side. I avoided it. I'd go down the elevator, cross over underneath and come up the other elevator. Whatever, it worked.

So Sunday, we arrived early and there were few people around. I rolled to the bottom of that ramp and looked up. I told Joe that I knew I'd not make it all the way up, that I'd like him to walk behind and not help until I asked, and we'd see how far I could make it and then I could really work on my strength so that I could make it all the way.

I started.

Immediately I knew that this was the hardest ramp I've ever tried to do alone. After two or three pushes I devised a manner of pulling with my left hand on the rail, and pushing with my hand on my right wheel. It was hard. I knew I was being really loud because people turned to stare. I grunted like a man with constipation after a cheese tasting party. It was work and I couldn't stop making the sound. I was sweating, but I kept at it. Suddenly I knew and I said to Joe, "I'm actually going to make it!!" Cresting the top I felt victorious. Really victorious.

Ha ha, this post isn't about me pushing myself up the ramp. Fooled you!

It's about Joe not helping me.

People stared at me grunting my way up that ramp, using every bit of my strength to manage it, but they also stared at Joe. Why the hell wasn't he helping me? There was anger and disgust on their faces as they watched him. They thought that he wasn't doing anything. But, they didn't know that their stares and their unspoken negative opinion of him was really hard on him. Joe, like everyone else, likes to be liked. I knew he was fighting his own battle, I knew he was struggling not to help me as I was struggling. I knew that this was not something he was comfortable with doing. But he did it. In doing nothing, he'd worked harder than I think he's worked in a long time of helping me. In doing nothing he did something of tremendous importance.

In the International Journal For Direct Support Professionals, in December, an article was published on 'holding space.' It's in many ways one of the most important articles I've read in a while. It talked about the importance of creating space for people to grow, for people to feel safe in, for people to simply be. That's exactly what Joe did, he made this a safe experiment for me, he was there to support if and when I asked for it. I didn't worry about rolling back or about losing control, that allowed me to focus entirely on pulling with one arm and pushing with the other. It allowed me to succeed.

I wonder if people with disabilities begin to lose skills and abilities or aren't taught skills and abilities simply because of the 'need to help' and the need to be seen as 'helpful'. I wonder how much people are limited by what people believe their roles are? The article talks about doing something by doing nothing.

I did something.

Joe did nothing.

And both were hard work.

Monday, January 09, 2017

Memo

Memo to Two Disabled Women:

All I was doing was being friendly. I had caught your eye as I entered and I nodded to you as I rolled by. The two of you were stopped and had pulled your power wheelchairs off to the side. You weren't talking, it looked like you were waiting. My nod was greeted harshly and then, you, the one in the light pink parka, said that "We don't acknowledge lifestyle disabilities." Turning your chair away from me was your way to put an exclamation mark on that statement.

I've not heard the term 'lifestyle disability' before, and I don't know exactly what you meant by it, but my guess is that you were making reference to my weight. And if you were you'd be mistaken, my weight is what most people connect to my disability and most people would be wrong. My disability is a result of a catastrophic illness which led to several surgeries. But, I really don't think that matters.

Let me say that again: I don't think that matters.

I agree that the disability community is a community as diverse as it can possibly be. I also agree that it's not so diverse as to include everyone. I abhor the 'We all have a disability in some way' sentiment as it's intended to be a mark of humility but it's simply a means to disavow privilege. I see our diversity as a strength of our community, I see it as a challenge for all of us to open our hearts really, really, wide. I see it as a potential source of incredible strength, and power and knowledge and insight. You're disavowal of me as a member of that community based on your own set of prejudices, saddens me. And, yes, if you meant to, and I know you did, it hurt.

This is not the first time this has happened to me. Several years ago, maybe two years into being disabled, I won a Canadian Blog award and then was attacked by one of the other nominees who thought I should get an award in the 'fat' category not the 'disabled' category and she stated, clearly, that she did not think that disability status should be given to those who choose to be disabled. She was angry.

Luckily, I haven't had this experience often. And perhaps that's why your words cut me so much. I didn't expect anything back from you, I didn't expect a nod or a greeting, I just acknowledged you and left it up to your will as to any kind of nod back. I don't just nod to people with disabilities, I should say, I nod to people who catch my eye, all of them, it's habit.

You lashed out at me with such anger. You wanted me to know that your community doesn't include me. Well, okay, forgive me for being really good with that. But, I'm sorry to tell you, you aren't the gatekeepers to this community, and like it or not, I'm in.

Dave