Monday, January 23, 2017

Tickets

There is a small convenience and news store that I like and when I'm nearby I always pop in to buy my lottery tickets. It's very small and yet there is room for me to move around in so I can be in front of where the trays of scratch and (usually) lose tickets are kept in big trays. If there are people in the store I don't attempt to get in front of the tickets, the store is simply too small and people move so erratically that I might accidentally cause hurt.

In those times where it's too busy for easy entry I pull up beside the cash register and the fellows who work there pull the big trays out from under their protective shield and hold them over for me to pick out tickets. Typically I ask them to just pick tickets and to not bother bringing out the tray. Usually they agree and grab a few of what I ask for. But yesterday I pulled up and asked for a few of the scratch tickets and asked him to just pick them for me. It was a new fellow and he said that no, he'd get the tray. He said that part of the fun was picking the tickets and he didn't want me to miss out on that.

He held out the tray and I went about picking out tickets. I joke with him saying, "How's your arm holding out?" He smiled and said that he was fine. After a pause, he said, "It is my privilege to serve customers and my duty to do that with kindness." I had finished picking the tickets and he put the tray back. I paid for the tickets and wished him a good afternoon. He did the same.

I looked up "duty" to find out exactly what it meant. Several meanings were given but two were:

- a moral obligation

- something you feel is the right thing to do

As always, in these kinds of moments, I thought about the work that I do with people with intellectual disabilities. Do I always remember that it is a privilege to serve them and that it is my duty to do so with kindness? Do I always remember privilege and duty when it comes to how I do what I do? I'm not sure that I do. I think sometimes it's a job, sometimes its a job that I love, sometimes it's a bit more than a job, it's a privilege that comes with a duty.

I left that store feeling respected and cared for by a stranger, someone I've never met before, and, that felt good. Really good.

Maybe if I remember how it feels to be served with kindness, I'll remember that that's how I can make someone else feel.

Maybe.

Sunday, January 22, 2017

The Trouble With Diversity

I've been asked, several times by different people, why I haven't written more about Trump. I've been chastised a couple of times form not bringing a disability perspective to the phenomenon of Trumps rise from 'can't win' to 'did win' in the states. My only response has been, thus far, is that there are already a lot of people bringing a disability perspective to the slow and steady rise of hateful rhetoric about those Trump perceives as having a threatening difference. You know, anyone but certain white able bodied males. And besides, I remind them, I am not 'the voice' of all things disability and I have a responsibility, in writing this blog, to write only what I am moved to write.

It should be no surprise to anyone that I am appalled and frightened by the very idea of a Trump presidency. I was one of the ones who was not surprised that he won. I have seen how hate stir into action while love likes to steep. Love got up an hour late and the election, it was done.

But I want to write about my person Trump problem. I have a lot of Facebook 'friends,' most of them I don't actually know. Most of us are connected by our own relationships, personal or professional, with disability. So that means I have a very diverse group of people I'm connected to and whose posts I read in my daily feed. For the most part this is great. I feel up to date and informed about what's going on in Australia and the United Kingdom and, of course, the United States. I hear of things on Facebook before in the media, and more importantly I hear of things that are never covered by the media. The media has no special interest or drive to cover disability issues so this link for me is tremendously helpful.

What this diversity on my feed also does well is bring forward a wide variety of points of view. Most I agree with, some I do not, and that's lead to great discussions and I find, more often that I would like, I find myself recognizing my own prejudices or flaws in my line of reasoning. Good. I grow. So I'm not uncomfortable with divergent opinions.

But.

Now.

Trump.

There are those who post very pro-Trump messages and memes and who are really, solidly, behind the man and his philosophy of the 'forgotten people' of America. He's not talking there about gay people or women or people of colour or people with disabilities - we're the one's whose attention has pulled away from 'regular Americans' (here read white heterosexual able bodied people). To suggest that I'm not a regular Canadian because I am gay or because I have a disability is a slight that would bring me to fight. To suggest that there is a 'regular citizen' is to suggest there are 'irregular citizens' and that's the divide that I find terrifying. Being set aside, culled from the group, upsets me. But ... here I am, off track. But I get off track in thinking and talking about this.

What I was trying to say is that they post things that are pro Trump and I believe, anti me. I don't know how the reconcile those two things. But I don't know what to do either. I don't want to just unfriend people, I don't want to not hear their voices, but I've also found that engaging them isn't particularly helpful. You can't talk to someone who is already ready to scream.

I see their posts, read as much as I can and move on. I don't like the posts so I don't 'like' them. But other than that I'm just going on. I value diversity, but, my good heavens, that can be a difficult way to live. I guess you can sum it up by saying: The trouble with diversity is that it's diverse.

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.