Saturday, January 21, 2017

My Stupid, Stupid, Heart

Not sure if it's because of the number of times my mother washed my mouth out with it but I developed a taste for soap. Now you won't find me wandering the aisles of fancy toiletries shops sniffing at gently scented find milled bars of soap produced from the milk Yaks who only ate clover. You will however find me in Winners or Marshals along with others who are as unaware as I about the effect of clover diets on a bar of soap. I like a nice soap.

Two days ago, Joe placed a new bar, a nice one made from goats milk just in case you want to know, on the tray in the shower. He set it on the stub left from the other one. That one had been a black soap that produced the nicest lather. I remembered, when I saw the new bar, all nice and plump, sitting there tempting me, about the first time I'd washed with the other soap. How clean it made me feel. I started to feel a bit sorry for it. I mean there was more left, it would last another week or so, it still had much to give.

I reached for it and it dropped from my hand and slid to the drain. It was too far away for me to reach. Again, I felt almost pity for it. I did. Really. But I grabbed the new soap and began my shower routine. When I was done I noticed the old soap, all soggy from being submerged in the flow from the shower, I called to Joe to rescue it and put it back on the tray. It didn't deserve to be treated that way.

A few days later we were out and about and we came upon a old fellow, sitting on cardboard, leaned against the wall of a building, with his cap out, asking for money. He had an old sign beside him, but it was so covered in grime that it was illegible. I carry with me $5.00 gift cards for Tims, a coffee shop that's easy to find pretty much where ever you are. I stopped and gave him one of those cards, he smiled and said that he'd use it to go get a coffee and to get warm when he couldn't take the cold any longer.

He opened a little bag, resting by his side, attached to him by a long strap over the opposite shoulder. He wanted to place the card carefully among the stuff he had in there. We were still chatting and I notice a small stub of soap placed lovingly in his bag.

A stub of soap.

My stupid, stupid, heart.

I realized that I had got all attached and imbued an inanimate object with feelings and humanity, a piece of soap for heaven's sake, and yet, even in this interaction, even with giving him the card, even with our brief chat, I didn't feel those things for him. Not really. Not deeply. I sat there stunned.

Accused by a piece of soap.

My stupid, stupid heart.

I discovered that humanity is something that, in my mind, I have the power to grant to people, to things, to the lonely tree behind my apartment building. And because I have the power to grant it, I also have the power to withhold it. Not anyone's actual humanity, but my willingness to accede to it in how I see them.

I don't want that to be under my power, my wish.

I want the ability to see the humanity of every person I meet hard wired into my brain. I don't want to be able to separate some from the herd.

But I am able.

And I do.

Because of my stupid, stupid heart.

Friday, January 20, 2017

Well, He Asked

I'm at that age where I've been around for a long time, not just on this earth, but in the work that I do, that people will come to me to ask questions. The problem, sometimes, for them is that I'm also at the age where I watch my mouth just a little bit less than I did a few years back. I just don't have the strength, or maybe it's desire, to hold back my immediate reaction.

It happened that I ran into someone who recognized me and in the midst of an 'Oh, hi' kind of interaction that the fellow thought that maybe I would have time for a quick question. I did have time and I like quick questions. I like to stay nimble on my mental feet so I told him to go ahead.

He told me that he was working with someone with an intellectual disability. She is being bullied because she has hesitant speech. It takes her a few moments, sometimes between words, for her to gather her thoughts and then get them out. It's not a real problem for her, but it can be irritating to others. One of the women that she meets at Bingo sometimes makes a big deal about not wanting to sit next to her because she talks like a 'r-word' and the fuss that this woman creates is really hurtful to his client. What should he or she do?

"Well, first," I said, "everyone needs to realize that her speech isn't irritating. Her speech is her speech." I wanted to begin there because I so often hear that someone is being bullied and then there is a 'sort of excuse' given to the bully because the person is described as 'a little annoying' or 'can be a bit pushy' or 'really is fat' or 'does dress kind of provocatively.' All that has to stop. It's blaming the victim and excusing or giving a rational to a behaviour that is simply unacceptable under any circumstances. Teasing and bullying are forms of violence. Period. No excuse. No reason. Violence.

Then the fellow jumped in to say, "I should have said that the bully is another person an intellectual disability."

Oh.

Really.

And that should make a difference to my response?

"What difference does that make?" I asked.

"I just thought you should know?" he said.

"Why?" I asked.

"Well, my agency supports both women," he said.

"Do you think that causes a conflict of interest?" I asked.

"Yeah, well, maybe, I'm not sure," he said. I could tell he wished he hadn't asked the question.

"Have you been aware of this for some time?"

"Yes, it's been going on a long time?"

"And what have you done?"

"We've talked to both of them?"

"And what have you said?"

"We told the woman being teased that she should ignore the other woman and we told the other woman that she shouldn't tease others."

"Did it work?"

"No."

By then he was out of time and had to go, I gave him my email and asked him to write me so we could finish the discussion, he said he would, and he did, and he's given me permission to write about our first encounter.

I wanted to write about this, however, because I worry that we care about bullying and teasing differently when it's done by a staff, a community member or some other non disabled person than we do when it's done by a person's peer within an organization. Then, it's often just not taken as seriously as it should be or there's a 'well what can we do about it?' attitude. Other times I hear people talk about the bully with compassion - telling their story and how hard they've had it, as if that explains lack of action on the part of the supporting agency.

I don't like that people have had it tough but I don't think that gives them an excuse to harm or perpetrate acts of social or physical violence on another.

Disability is many things but ...

Disability isn't an excuse.

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.