Permission

Something happened to me today that's never happened to me before. I'm nearly 64 so that takes some doing. It was a simple thing really, but it took me aback.

We were in the line up at the grocery store, we both nodded to the woman working there as she is often assigned the accessible till. She is an older woman who speaks English well, though her accent, combined with the noise of the store, and I add reluctantly, my age means that I sometimes have to listen very carefully to hear what she is saying.

As she checked out our stuff I noticed that she had a locked display case holding for scratch and win lottery tickets. I am a sucker for an impulse buy so I asked her if I could have all four of the remaining tickets. She had to get a manager to come with a key, which she did, and the tickets were out and being scanned.

When we were done and the groceries were paid for, she picked up the tickets that I had asked for and ... Well let's start with what she didn't do. She didn't do what everyone else has ever done when I've been a victim of my impulses in the past, she didn't just hand them to Joe. Now, I never really noticed, we are together, he's closer to the cashier and handing them to him seemed natural. But, she didn't do that.

What did she do differently?

She looked at me and said, "Is it OK for me to give these to him?"

She enunciated very carefully every word, she wanted my permission to give lottery tickets to the person I was with.

I thanked her for asking and said that it was fine to give them to him. She smiled, said, "I thought it would be," and handed them to Joe.

She thought it would be acceptable to give them to Joe but even with that assumption she asked my permission first.

You might think that a small thing, maybe even to small to write about, but gosh it was big to me. I liked it. I liked being asked permission. I liked being put in the position of deciding what happened next.

So often I don't notice when assumptions are made and Joe is automatically deemed the responder, the receiver, the prime mover. And this was one of those times.

Not again though.

Not again.

Her Joke

"Hey Dave," she typed.

There are several people with intellectual disabilities that I know and keep in touch with through Facebook and Facebook messenger. Most of the time it's just quick check ins but sometimes it's more in depth than that. I recently had a discussion, for example, with a man who wanted to know the best way he could talk to his boss about being teased by co-workers. That turned into a fairly long discussion that is still, month's later, not quite done.

But then there is a woman with an intellectual disability who contacts me with jokes and horrible puns. I like her and I like the jokes but she knows that it's very, very hard to make me laugh. I smile, a lot, but I don't laugh much. Poor Joe, he laughs at everything and I laugh at nothing. It's our version of Jack Sprat and his wife. 

This time, she got me though.

With a really funny joke.

"What's plain language for 'Please leave me alone and let me do it myself?"

I liked the question when I first read it, without knowing the answer. I liked that the joke was a disability 'in joke' and that, more intimately, it was an 'in joke' between us. She constantly calls on me to use plain language when we chat, and she does it even when the language is very clear. She follows the question up with an LOL, or more commonly, LMFAO. 

Ha Ha, I didn't laugh.

So I expected a groaner as would be our history but instead I, Laughed Out Loud.

So, here it is ...

"What's plain language for 'Please leave me alone and let me do it myself."

"Fuck off?"

I laughed even as I typed it. 

Saucy. Cheeky. Vulgar. Funny. All wrapped up in a conversation that would have been impossible for me to have, because of technology and because of repressive practices, a mere few years ago.

Ain't it freaking grand.

Being Accessible

I went out shopping today to buy gifts for some people on my list. Joe was one of them, so Joe didn't come with me. My first stop was the Bay store near me, I knew exactly what I wanted, exactly where everything was and hoped to get in and out without fuss.

As it's the holidays it's no surprise that there are lots of things placed in the aisles but they were well spaced and I could easily navigate around them. This is a store where I've had several battles about placements of displays and I was cheered to see that they were there but they weren't in any way a hindrance.

But, as with many well made plans, it didn't go as I expected. The one section I really needed to go was completely impassable. I could see what I wanted but there was no way I could get even near it. Now I've shopped in this section before, I've gotten around easily, but not this time, and not because of the holiday. It was because construction and remodelling was underway and everything that was scrunched up together. Now I don't typically shop where it isn't accessible, but this struck me as a different and temporary situation.

There are many ways for a store to be accessible. I went to a clerk, who was on the phone to another department seeking information for the customers in front of me. When she'd answered their question and hung up the phone she turned to me. I explained that there was something I wanted but because construction made the area inaccessible I couldn't get to it.

She was out from behind that desk so quickly it was like she magically transported to the spot right beside me. We headed over and she brought me what I asked for and then when I said that I'd like to see a range of products matching the description, she went and got them for me and waited as I made my choices. I thanked her and she brushed away the thanks saying that it wasn't a 'problem to serve me.' I bought what I wanted and then headed to the next store.

Arriving there, I realized that I didn't have my glasses. I needed my glasses. I was stuck, I approached a young man and mentioned that there was something I wanted, that I knew the store had because I'd searched their inventory on line and I needed his help in finding it. He looked over to the area where I'd need to go and it was packed with shoppers. He offered me the choice to wait while he went to get it or for me to accompany him and we'd swim through the crowd. I chose to wait. He brought it, smiling, and told me that he'd grabbed the last one.

I thanked him. He too brushed it away. "I've only got a job because we've got customers," he said before heading off to help someone else.

I'm sure what happened today but every person I met today was accessible.

And, I liked it.

Casual Cruelty

It's disconcerting.

The casual cruelty that people are capable of, the easy way that some have with hate, the dismissal of the idea that the feelings of others matter, sometimes takes me aback. I know that the anonymity of the keyboard and screen allow people to say things that they may never say aloud. I know that people hide behind made up names and dressed up personalities. I get all that.

But still.

In recent days I've seen a real upsurge in the use of the portmanteau "libt*rd" in comment sections, usually in a discussion gone acrimonious. It's no surprise that I despise the use of the 'r word' in any form in any place. It is such an offensive and cowardly word. Years ago the BBC did a survey of disabled people to discover the most derogatory word about disability and the 'r word' was top of the list. This means that people with disabilities as a community, as a whole community, stated clearly, 'this is a word that we all find hurtful.'

But it doesn't matter, does it, what disabled people say about our own lives, about our own experiences and about the oppression that we experience on a daily basis. Our voice isn't part of the discussion even of the subject of disability. Even so, we had the opportunity to speak and we did, this is the word, which when tossed, hits the vulnerable parts of our hearts and souls. No one may have been listening but that doesn't mean that what was said didn't matter.

The use of 't*rd' in combination with any other word, used to make up a new word in which the 't*rd' part is the ultimate insult isn't new. I know that. But the uptick in that particular word is noticeable and, by and large, of course, by some conservatives or conservative minded people. The people who stand with the church and with God. The people who talk about morals and scruples. The people who see everything as black and white. Those people are the people who seem so comfortable with spewing hatred. Those are the people who seem so comfortable mocking people who they hurt. Those are the people who love to victimize others and then say that their victims are victims of their own thin skin, their own sensibilities or their own self righteousness.

I don't think the idea that calling names is wrong is new to anyone.

Ruby and Sadie new that name calling was hurtful at a very early age.

No one had a talk with them about it, they just knew.

Like we all know.

So, let's be clear people using this portmanteau know what they are doing and are doing it purposefully. They intend offense, they intend insult and they intend hurt.

Who are these people?

We don't know of course because they don't use their names.

They dub themselves with a made up moniker intended to sound cool, or tough, or hard. And yet, they are in hiding, which is exactly the antithesis of cool, or tough, or hard.

And because they are in hiding I don't know who they are.

I actually want to know who they are. Not to identify them, not to chase after them - which would probably frighten them silly, but to get a sense of 'why?' I don't get 'why.'

It strikes me that I don't know a single person that uses that kind of language. But, I fear that maybe I do, that maybe the person clicking on their keyboard as I click on mine, might be in the line up in front of me, on the sidewalk beside me, in the movie theatre munching popcorn two rows over. Maybe I'm in the presence of people who find cruelty an easy option. Maybe I'm in the presence of hate without knowing it. Maybe the world is a little less safe than I thought it was.

I don't find it hard work to avoid name calling.

I don't find it difficult to use respectful language.

I don't find myself working up a sweat to control my tongue even when I've lost control of my temper.

I just don't.

Because, when I was very young, I learned, in many ways,that name calling hurts. And I don't want to be hurtful.

Isn't it that easy?

I had thought so.

But, I guess not.

Rainbow Laces

This will not be a pleasant post.

I'm angry.

I read, today, about a 13 year old boy who committed suicide because of years and years of homophobic bullying. Most of his life he was tortured by social violence.

Bullying is social violence.

Understand that.

It's an act of violence that happens, rarely, in private.

It almost always has an audience.

Fuck.

I read, today, about some sports hero wearing rainbow laces to show solidarity with the LGBTI community. Yep, he got press. Yep, he got praise. Yep, what he did is nearly meaningless.

Like safety pins are nearly meaningless.

Like crosses around your neck on a chain are nearly meaningless.

Fuck.

I'm tired of symbols.

I'm tired of easy activism that is had with the click of a mouse.

So you like a post about racism.

So you re-post a poster about sexism.

So you write a comment denouncing homophobia.

Nearly fucking meaningless.

Rainbow laces won't save a boy from killing himself, at 13 fucking years old, because he'd been bullied because of his presumed sexuality for most of his life.

They won't.

They just fucking won't.

You know what will.

Someone stepping in and doing something.

Someone standing with him.

Someone sucking up the courage to take fucking action.

Enough with symbols, and likes, and re-posts. They are nearly meaningless. They are worse than meaningless, they make people feel like they've done something. They've taken a stand.

I said, 'nearly' meaningless, didn't I. Did you notice.

Because they are meaningful if they MEAN something. If they mean that because of that symbol you won't stand by as a group of teens surround a fat guy in a wheelchair taunting him with pig sounds. If they mean that you won't stand by when your own kids call something 'gay' as a pejorative. If they mean that you won't be silent when someone says 'but all lives matter.' If you won't DO SOME FUCKING THING.

Rainbow fucking laces.

Is a PRODUCT.

Safety pins.

Are a PRODUCT.

Crosses on chains.

Are a PRODUCT.

The word activist, when it's spoken begins with ACTIVE!

It's action.

Make those symbols mean something, make them mean action, make them mean that people who see them know you will not be silent. Make them mean that a 13 fucking year old kid will know they aren't alone, not because you are wearing them but because you are demonstrating, through bold action, that he is loved and valued and not fucking alone.

Not.

Fucking.

Alone.

A thirteen year old boy killed himself.

A story in a paper.

Appearing the same fucking day.

That some athlete dude ties his billion dollar shoes with rainbow laces.

And all I can do, when reading one story after the other, is fucking cry.

What I Do

I was accused recently of being a snob.

This surprised me as I'm used to thinking of myself as amongst the snubbed. a Snubbee not a snubbor. But I need to be open to feedback so I asked what I had done that made me appear snobbish.

The answer, when I heard it, didn't really surprise me. I do do what I was accused of doing. The only thing is I do it for a different reason than the one being attributed to it.

So, here's what I do.

When I'm out and about, in my power chair or my manual chair, I don't look at people. I look mostly down towards the ground, catching others sort of waist to feet in my viewpoint. This isn't because I'm creepy it's because, as a wheelchair driver or a wheelchair pusher, I need to look down. I need to see the terrain I'm going over, I have to look for hazards and barriers and I need to see where my chair is in relationship to other people's legs. I don't want to smash into other people's bodies. So I look downish not upish.

But besides the mechanics of pushing or driving a chair I don't look at other people because I don't want to be subject to other people's reaction to me. I don't want to see the stares, the pointed fingers, the faces that people make to show disgust. I don't want to encounter any more of those than I have to, so I just don't look at people.

So put those two things together and that means that I don't greet people that I know when I'm out. I just push on, drive on past them. No cheery 'Hello,' no 'How's it going,' not even a 'Cold enough for you?'' None of those things, I just go by.

Because I want to be a safe driver.

And because the community is rarely safe for me, I need to make it as safe as possible.

I understood exactly how my behaviour might look.

So, I apologized.

And explained.

And then, of course, they apologized and explained.

It's amazing what a conversation will do.

The Season Begins: What Christmas Means To One Mother and One Son

She greeted me with warmth when I got on the bus in the morning. I was a little surprised because I go to work fairly early and am picked up even earlier and when I ride with others at that time, they are, um, chatty. I'm a morning person so I returned her greeting and asked her how she was. She smiled and said that she was already having a nice day.

I got strapped in and we took off. We went by a series of trees decorated with Christmas lights and she asked me if I celebrated Christmas. I told her that I did and that I loved the season. She said she did too. We talked a little more and when I told her what I did for a living she told me that she had a son with an intellectual disability who lived in a group home in the city of Toronto.

"Oh, how he loves Christmas," she said, then paused and added, "and of course, then, so do I."

"What's his favourite part of the season," I asked. She looked at me, hard, and then sat back in silence. She fiddled with the controls on her power chair, it was as if she was deciding if she should answer my question.

I hadn't thought it a difficult question, what's hard about 'presents,' 'Christmas music,' 'decorations,' 'feasts' and all the rest of it all, including, of course, 'fancy Christmas crackers' and the cheap little crowns we wear as we eat like royalty.

She said quietly, "He likes the season because people are just a little nicer to him over the holidays, they pay him a little more attention and he gets to make a few more choices."

I sat stunned.

Then she said, "I want it to be Christmas for him year round."

We arrived at her drop spot and as she got off I said to her, "I wish you and your son a never ending Christmas."

"That would be nice," she said, "really nice."

People little nicer.

Getting a little more attention.

Every day a few more choices.

These are a few of his favourite things.

Mine too.

Ten Fingered Hands

A few days ago, I wrote a post about the natural assumption that people with disabilities live their lives alone. That disability equals isolation. I believe that part of the disphobia that people have is from a bone deep fear that if they became disabled they will not only deal with a new way of being in the world, they will deal with loss of family and friends and any social contact at all.

People can't simply, in my life anyway, see the relationships I have.

They see a lonely, probably pathetic, fat guy in a wheelchair.

I was at the hospital getting an iron top up which takes several hours. Several hours to get a vein. Several more hours to pump the stuff into me. Joe comes with me and waits with me a while and then I send him off to do what he needs to do and I read my book. We talk on the phone several times during the hours that I'm there. Then he comes back about a half hour before I'm done and we talk like couples talk about ordinary things: what are we going to have for supper, are we packed and ready for the next trip, were there any emails of importance. Stuff.

The nurse who was disconnecting me from the machine had met Joe, had seen him come with me and come back for me, had been there as we chatted, began telling me that some people get a bit dizzy from the infusion. She said it would be good to have someone with me for a couple of hours.

Then she said, as a statement, not a question, "So, you live alone."

Both of us were startled.

"No," I said, then pointing to Joe, "I live with him."

"Oh, really," she said with surprise in her voice.

The prejudice and stereotype regarding disability is so strong that people can't see anything but their preconceptions. Even when there is clear evidence that what they think about disability and people with disabilities is wrong, they still can't see us.

See us.

Really see us.

This is our challenge. Someone has stolen from us the right to have our own narrative, the right to have lives lived as individuals, the right to have a story that's different than the one that was crafted and created in different times by ten fingered hands.

When A Hug Is Really A Hug

She is standing right beside me looking me directly in the eye. I am 63 and in a wheelchair and she is 10 standing tall. All around us people are hugging each other and saying hellos. Now she and I are connected in a kind of abstract way and if family trees were drawn she'd be over there and I'd be over here and I'd be one of the ones with the dotted, not solid, lines.. I've met her, I think, only once before. She is a lovely child. And. She is looking at me.

I am looking at her and I knew that to her I am really, a stranger. I said to her, in the context of hugs and greeting going on around us, "I'd like to give you a hug, but I'm kind of a stranger to you and you don't have to if you don't want to, I'm good with that." She actually looked a bit surprised, a choice had been offered. So she did what she needed to do, she thought about it.

"I'd like to give you a hug," she said.

Now, before I go further, I want you to notice her wording because it's of vital importance. She said:

I'd like to give you a hug.

She did not say:

It's OK for you to hug me.

There's a big difference between those two statements. Remember, I had said that I wanted to hug her, but that she had a choice. I was the person initiating the potential hug. She could refuse it.

If she had said, "It's OK for you to hug me," she would have been granting me permission to give her a hug. She'd be ceding to my request.

But she said, "I'd like to give you a hug," she is saying, instead, I have made the decision and this is what I want to do. She wasn't letting me, she had now taking the initiative and stated her preference.

Then.

She gave me a hug.

And it felt great.

Part of the reason it felt great was because a 10 year old girl had thought about the hug, had made a choice about the hug, and hugged because she wanted to, not because she'd been asked to.

It was a fully consensual hug.

And those feel really, really, good.

Cripsterbation

"Please!?!?" she was pleading with me.

I had come out of the exercise room and was heading up to our hotel room, while Joe was out getting the laundry done. I rode up, in silence, with a woman of about my age. We got off the elevator and I began pushing down to our room. It's an accessible room and, like many of them are, it's at the end of a long hallway. The carpet was noticeable but manageable and I was making pretty good time.

Suddenly the woman, who had stopped at her room a couple of doors back was behind me and I felt her touch the handles on my chair. This is a major violation for me, and I don't care if people don't understand that, I don't need anyone's permission to feel violation and I am not required to forgive ignorance that causes unwanted touch. I came to a dead stop. I held on to my tires resisting her effort to push me.

"Don't," I said assertively.

She began to talk quickly about helping me.

"DON'T," I said assertively and loudly.

She let go of the handles,

"Never touch someone's wheelchair without their permission," I said in a tone that let her know that I was not in an 'educational' frame of mind.

"Please, let me push you, let me help," she said.

"I don't need your help and I don't want your help," I said, I was still angry at her for touching my chair and attempting to push me without even asking me.

"Please!?!?"

"No, I don't need help."

"But I've had a really bad day and helping you would make me feel better," she said, nearly tearing up.

The rest of the interchange didn't go well, but let me assure you, she didn't push me to my room.

I'm still upset by this experience. I can brush a lot of them off but, shit, really? I've always resisted insper-porn and all that comes with it. But this, to me, is just a little bit uglier. The idea that we exist so others can show charity and feel better about themselves is disturbing. Such selfishness, she didn't want to help me, she wanted to help herself. I was to be used so she could massage her self esteem a bit. A little bit of cripsterbation will make you feel just fine.

Ewwwww.

Let me say that again.

Ewwwww.

I got back to my room and I'm sorry, I had to do it. I took out my wet wipes and wiped down the handles at the back of my chair. She creeped me out. She disrespected me. And she left feeling that I was an ass for not letting her do what she needed to do to feel better.

I never thought I'd be a centerfold in the Cripsterbation Monthly magazine.

Nor did you, I imagine.

The Second Look

So, I went to the exercise room in a hotel for the first time. I found a machine where I could do two exercises, one was to take hold of a bar from on high and pull it down, this motion lifted a preset weight on the machine. The other, on the same machine, was pulling a bar straight towards oneself thus lifting the same weights. I set the weights too low the first time, then went way too high couldn't even move it ... feeling like a Goldilocks good at adaption, I found one that was just right. Let's define, 'just right' as a piece of equipment that I could pull into and use from a distance, I would pull to me at a couple of different angles rather than straight down. I couldn't get on it, but I could get near it, and that would have to be enough. So sitting in my wheelchair, I did three sets of 10 on each one and then was tired out.

But here's what I wanted to tell you.

These rooms have mirrors everywhere. I had been so focused on the machine and pulling the bar down or , that I didn't notice there was a mirror right beside me. I just did the work. I enjoyed it because it was different from anything I'd done before, and the room stayed empty so I had privacy, so I didn't feel rushed, I didn't feel on display.

Then.

I noticed the mirror beside me.

It was a big mirror. It covered the wall. I saw all of me, I saw my chair, my body, my arms lifted and pulling on the weights. I saw my size. I saw everything. ALL OF IT.

I became immediately embarrassed.

I looked ridiculous, silly even.

I became a little angry at myself, what the hell did I think I was doing.

I don't belong here.

Then.

I looked again. And saw a fat guy in a wheelchair lifting weights in a gym and thought ...

good on him.

Sometimes, you've got to take a second look.

The Ass in the Hat

Some people don't get it. And even though they are clueless to the situation, I've got to be nice because I need their help. On our flight out here, Joe and I had mistakenly booked our seats such that there was one empty between us. It was a busy flight and that seat was soon taken.

When we got to the airport and to the desk at the gate, we approached and I asked if the attendant could fix it so we were seated beside each other. He looked at me, smirked and said, "I don't think you'll have any problems getting the other passenger to switch seats." In one way, I got what he was saying, it was a row of four, and moving one over made no real difference, either way the other passenger was going to be two in.

But the smirk was about my weight and about the fact that any passenger in their right mind would give up the seat next to me given the chance. I got the smirk, as I was meant to, and I asked again if he could fix it. He took our tickets and said, "I'll page the passenger and make the change but I know there will be NO problem in this situation." Smirk. Smirk.

When we were ready to board, he'd made the change. I said, "Thank you very much." I shamed him with politeness and it worked. He looked like he knew that he'd been an asshat and he knew that I knew it too.

Now I know that, at my weight, people would rather not sit next to me. God only knows that there are thousands of commercials and even more movies that have a scene about some poor, beautiful thin person being stuck between or beside fat passenger(s). Ha, ha, very funny.

But that's not the issue. I worry about getting someone who resents moving, who is angered at being asked to make a change, and whose reaction is negative and nasty. I worry about my physical and emotional safety. It's a real concern, I have a right to protect myself from it.

However, I don't want to explain that to the gate attendant. An attendant whose attitude towards my weight is a superior smirk that is the very example of the kind of shit I don't want to go through.

It was a fair request.

He did it for me.

People don't get my social world and the dangers that lurk therein. So thankfully, I do. I've learned that I need to take care of myself, in whatever way I can. And if I have to endure a smirk or two along the way, well, I'll do it.

Because I have a right to be safe in my world, because my world has nasty people in it, and I can't forget that because, they, unfortunately, don't.

Meltdown

"Hi, how are you?"

It was the wrong question to ask me at that time. I'm at a conference and facing a lot of issues regarding accessibility. I have to be in a different hotel because the host hotel doesn't have fully accessible rooms, there is no where for me to sit in my wheelchair in the sessions except the wide aisles, and the straw that broke me was the fact that the washroom on the conference level floor isn't accessible and I have to push down to the elevators and ride down. I had to wait as people streamed around me to the washrooms to get my chair turned around and get out of there. Then I had to find where the accessible washroom was, and then I had to get there.

I was upset.

I was angry.

My arms were tired from pushing on really thick carpet.

Then, just about at the washroom, I saw someone I knew who said, "Hi, how are you?" and I lost every social skill that I had. I launched into a series of complaints, I talked about my toileting needs, I talked about my chair placement. I dumped it all out. It wasn't pretty because I was pretty worked up.

Then Joe appeared and indicated that the downstairs washroom was indeed accessible and I rolled off.

I didn't even ask her how she was.

Yep, a social skills meltdown.

A few minutes later, back in a conference session, I began to think about how I just took that opening and ran with it. I know we know each other but, really, did she need that in her day?

Having a disability often means carrying around a bit of anger and frustration. But I don't want it to make me into an angry and frustrated man. I want to be aware of the needs and feelings of others, not just focused on my issues, my feelings and my needs.

I want to disconnect myself, from a set of circumstances, in order to connect with another person.

And I didn't do that.

Shit.

A Little Bit of Bragging

So I'm going to brag a bit.

Let me start by saying that, as I've been exercising and talking exercise with people, I've discovered that many people I know use visualization as part of their routine, as do I. However I don't visualize myself in new smaller clothes or with big shapely arms, although those are just fine visualizations, they aren't mine at all.

I've been working out to get stronger and I visualize challenges that are upcoming. So, the Vancouver airport has a massive ramp. Just massive. I've been able to push myself, independently, only a short way up the ramp. It's too long, too steep and therefore really intimidating.

It's not sexy but for weeks I've been visualizing that ramp. I never visualized myself going up the ramp, just the ramp itself. I lifted weights, grunted at the strain and nearly sweat blood all while just picturing that ramp in my head.

So the trip began. It started with me pushing the whole way from my apartment to the airport gate, with only a bus ride in between. I've done that before, though, so it wasn't any measure of the extra work I'd been doing to conquer that damn ramp.

We flew in a huge plane. It held nearly 500 people. We've never flown to Vancouver in a plane like this one so we weren't surprised we didn't recognize the part of the airport where the gate was located. I waited, at every turn, to see the ramp. We came out and realized that we were already at the top of the ramp.

Shit, it was like gearing up for a duel and your foe not showing up.

But ... I had to push myself up a carpeted ramp. I had to push for a very long way on carpeted flooring. I had to push myself up the out ramp towards the rental car location. I had to push myself up to where the car was located.

All done without breaking a sweat.

So, the duel will one day be fought, but there were minor skirmishes today, and I took them all.

It's a big deal for me to take back control of my mobility in the chair.

It's a big deal for me to feel my own power.

It's a big deal to feel strong again.

OK, end of bragging.

Mattering

Yesterday, someone who I needed to listen to me, listened to me.

It felt amazing.

Now this wasn't a personal chat, and it wasn't in my professional capacity either, it was a situation of me, as service user to another person, service provider. I went into the conversation knowing that I needed them to be flexible and to be willing to understand the situation and to respond, not with care or compassion, but with action.

To be honest, I held out little hope.

I'm sorry to say this but I've found that many people who work in human services,or in health care providing, really, really, don't like people much.

Not even a little bit.

I had had to talk to three people.

The woman who answered the phone, she was nice, very nice, her attitude and her voice were welcoming.

My confidence increased.

I was put to the next person, a gatekeeper.

She responded twice in such a way that I knew that she had not heard me. The situation that she spoke about in her response was not the situation I found myself in. I took a breath, calmed myself, and stated again the situation and the need. This time she heard and she said, "Well, I understand, I'm not going to be the person to say 'no' ... let me put you through to someone who may be able to help."

OK, it took a bit but she heard me, and she saw that the situation was a little unique.

I got to the next person.

She head the request, but not the situation and said, "Unfortunately ..." then she paused and said, "tell me why you are asking, I don't think I heard it properly." I told her. She said, "Give me a couple of minutes." She was gone for way longer than 'a couple of minutes' when she picked up the phone she said, "OK, we're going to be able to do that for you."

I was stunned.

She had, just as she was saying 'no,' begun to process the circumstance that prompted the request. Then she asked to hear it again. Then, and I almost can't believe this ... she took action.

I left that situation and the service provider part of my brain took note. It matters to hear requests all the way through, it matters to listen, it matters to take action.

It really matters.

I felt that I mattered, and my unique, individual, life mattered.

And that's why it matters.

It's Time

Many years ago a woman approached me after a conference that I had spoken at, she seemed nervous, and when she got close enough, I saw that her eyes were moist. I didn't recognize her, at first, but then she spoke. I was grabbed by the guts and thrown back years in time. To high school, to that time in my life where bullies ruled the hallways and difference, like it ever is, was a magnet for hatred. I feared school every day of my life. (And, no, unlike what you are told, it didn't get better, but to quote Joan Rivers, I got better.)

One of the teachers in that school was someone that I thought would listen to me, I approached her and spoke about being teased and physically assaulted in the hallways and locker rooms. She laughed and asked me what I expected as if it was my fault. I was wrong in trusting her, I saw her afterwards once, watching as a bully (that's the word we use so that we don't hurt the bullies feelings by calling them what they were 'violent bigots') called me a particularly, in her mind, clever nickname. This was who was standing in front of me. Age had changed her too much for me to recognize but that voice, I remembered that voice.

She introduced herself. She apologized for not listening and not helping, and then she asked me if I hated her. I didn't hate her, I didn't remember her, she wasn't different enough from others who were unhelpful, from others who broke my trust as a child, to stand out. So no, I didn't actively hate her. I was silent for a moment before responding and noticed that now tears were falling. She filled the silence by saying, "I'm so sorry, I'm so sorry." I spoke up and told her that I didn't hate her. I didn't say anything else, I didn't talk about how my ability to trust had been forever damaged by her and by others like her. I just said "No, I don't hate you."

She tried to explain her behaviour but I asked her to stop. I told her that I didn't want explanations, the apology was enough.

Then she asked me, "Is there anything I can do?"

I missed the opportunity.

Joe and I went to see the movie, Moonlight, yesterday and I was powerfully moved by the story. In it the subject of bullying is raised and presented as how it is experience, rather than how it is explained away, it is presented as social violence. It shook me. Deeply.

I've thought about the movie a lot since we saw it and I identified with the victim in a variety of different ways. And then...

I remembered her, standing if front of me and asking, 'Is there anything I can do?"

And I remember letting her off the hook.

Of course there are things she can do. She can dedicate herself, for the rest of her life, to speaking up, to stop being a silent witness to the ongoing social punishment of difference. Simply use her voice in places where she can, recognizing that it's not always safe to do so, to intervene.

I have had people, unexpectedly, come to my side when others are pointing, laughing, staring, name calling, making faces and noises. I've had people publicly call out other for being mean, for being hateful or for being intentionally cruel. It astonishes me every time, because it doesn't happen often. It takes bravery.

So, I should have said, "Being a bully is a violent way of being a coward, speaking up is a positive way to show bravery. It's time to be brave."

And it is.

It's time to be brave.

A Sole Soul

I used to think that the reason people feared disability and openly stated that they'd rather be dead than disabled was because of "The Tyranny of the Toilet" as I believe Catherine Frazee called it. What is the Tyranny of the Toilet? It's the idea that people, when they imagine themselves disabled, they imagine having to be assisted in the washroom and then catastrophize what that means and how that would feel. "I don't want someone having to wipe my butt," they say as if this is the worst thing that could happen to another person, to be made vulnerable in that way.

But now I'm wondering if there is something else that people fear, and maybe fear even more deeply. I don't know if this experience is unique to me because of the combination of my weight and my disability, but I suspect not. This has happened to me many times, in many ways, but became clear to me because of a frank chat with a stranger in an elevator.

We had gone to see the move 'The Trolls' this Saturday with the girls. When we got there, to a later showing than we usually go, the line up was huge!! The place was packed. As we waited in line I asked Joe to check and see if I had cough drops, Ricola to be precise, in my bag. I did not. I still have a bit of a cough and didn't want to have a coughing fit in the movie. I knew it was going to take a long while to get tickets so I scooted out and down the elevator to B1 where there is a Shopper's Drug Mart. I got the drops, and a special treat for Joe and the girls, and headed back up.

I pushed the button for the elevator and didn't have to wait long. I got on and it was empty. I knew that we'd stop at the lobby so I positioned myself to give maximum room. Two women and a young man got on. He got off at 2 and we had 2 more floors to go. I turned and asked the women if they were going to a movie and they said they were. I asked what they were going to see and they told me the movie they'd chosen. They then asked me what I was going to see, I said, "Well, we're here with two kids so we're going to see 'TheTrolls."

"Oh," said one, a little surprised.

I looked at her quizzically and said, "Oh?"

She said, "I probably shouldn't say this but I always sort of think of disabled people being alone in the world."

"I'm not alone," I said, "I'm here with my husband and we're taking a couple of kids to the movie." I admit that I said the word 'husband' purposely here. It's a word that stops conversation when I use it.

The doors opened and I wished them a good time at the movie and they wished me a good time.

For what it was, it was pleasant. And for what it was, I'm glad the conversation happened. It clarified for me what I've been seeing in the world for well over a year now. People are always surprised that I'm not alone. And even when I'm visibly not alone, like when I'm with Joe, people still see aloneness because they see a solitary disabled person with someone who is paid to be with them. 'Careprovider Joe.' And when I'm with a group people are surprised that I'm actually with the group, not an add on somehow following along but not really part of anything.

It's like disability causes a social death. That disability means loss of friends and family. That disability means a life lived in isolation. That disability means looking out at rather than being out with. That disability means a heart not loved, a sole soul.

I think that people fear disability because they fear disconnectedness, aloneness and isolation. Since they can't see us as part of the world, they can't see us in relationship to, they can't see us enmeshed in our own lives, they fear what they do see.

And what they see breaks their hearts.

And they don't want to live with a broken heart.

I am not alone.

I am loved.

I am valued.

I know these things but they aren't easily seen. I said to Joe we should get those partner tee shirts, you know the one with arrows pointing at each other ... but then we realized that 'I'm With Him' isn't a tee shirt we want to wear these days.

But one day, maybe we should.

First Trump: Now You

You scare me.

You there, the one who I thought supported the cause of civil civil liberties for people with disabilities. The one who was horrified at Donald Trump's mocking of the disabled reporter. The one who said 'Who would do something like that?' You said it with sincerity and even furor. And you know the shittiest thing of all? I believed you. I believed you actually cared about how people with disabilities were spoken about, how people with disabilities were portrayed and how people with disabilities deserved respect. More fool I.

I guess that why you scare me so much.

Because I believed you, I taught myself that I can't trust myself or my judgements. I can't identify an ally. I can't identify those that secretly revile me and those like me and who pretend otherwise to advance political agendas from those who truly support me, and people like me. You hurt my sense of trust, of others, and of myself.

Why?

I see your posts. I see you calling Trump all sorts of names. Yeah you, the person who got all teary and all upset when discussing Trump's behaviour and stating that he was a 'bully' and a 'name caller.' Yeah, now you are the one calling names the one using the tactics that repulsed you when 'the Trump' did it.

Worse the words you use are most often about his intelligence. Words that has systematically been used to oppress and to segregate people with intellectual disabilities. Now, though I don't use most commonly used words for people who are supposedly of low intelligence, and I protest only the 'R word' when it's spoken or written, I see the pattern of the comments and the posts ... all equating 'low intelligence' with bigotry and bias and bullying. All suggesting that Trump is a low intelligence kind of guy who deserves no respect.

Now I don't respect Trump because of his behaviour. It's his behaviour alone that disturbs me. I don't care about anything else. I don't care what his intelligence level is, as I've found this to correlate with pretty much nothing. I don't care what his education is, as I've found this to correlate with less than nothing. I don't care about who he is at all ... I care what he says and what he does. I care that he makes racist, sexist, homophobic, disphobic and ableist comments. I care that he sees women as people to be valued, on his scale, and assaulted on his whim. I care about those things.

Why aren't you talking about those things?

Why are you suggesting that his behaviour is a result of a slow mind rather than a heart charred with hatred and prejudice ... isn't that the issue?

So next time you are going to call him a name, think about it. Don't bully the bully.

So next time you are going to focus on his intelligence, think about it. Don't classify some. Instead comment on his behaviour.

So next time you pretend offence at disphobic, ableist, language and behaviour, look deep in your heart and if you find that, beyond puffed up outrage, you actually do care. Let that change you.

Brian Zed: Remembrance Day

I struggled to read his name.

I don't know why, at that moment, it was so important to me. Reading didn't come easily for me and most times I avoided trying. But in that moment. It was important. I was a very young boy and I'd been taken to the town cenotaph for a Remembrance Day ceremony. We were children. We heard Flanders Field read, poorly, by another child who strung the words together like they were sounds to be said rather than words to be understood. The ceremony had held no meaning for me.

But then, a man got up with difficulty, held himself steady by holding on to the lectern, began to talk about his brother. His brother who went off to war, he because of his disability could not go. There was anger and self hate in his voice, he had wanted to be at his brother's side. But now he was here to do something important, tell us that his brother lived, laughed and was a big hearted kid. As I listened I understood several things.

He loved his brother.

His brother loved life.

His brother was dead.

And we were not.

It was at that moment that I understood why we were there, on a gray and cold November morning. They had used the words 'heroes' all morning. And a hero, to a child, is Spiderman and Superman and Wonder Woman. A hero, to a child, is immortal. A hero couldn't possibly be a brother who didn't come back, could he? A hero couldn't possibly feel fear, feel pain, dread death, could they?

Standing there seeing a man, holding on to a lectern, standing with effort in the memory of his brother, break into tears, moved me. Men, in my small world, didn't cry. Men, in my small world, didn't let emotion break in their voice. Men, in my small world, went to war and came back. My dad did. I thought all dads did.

He finished his short speech, slipped back into his wheelchair, bowed his head and silently wept. I found I was crying, for this man and for his brother who was lost to him. I turned to the cenotaph and saw the long list of names. I understood, now, that these were the unreturned. I understood that they were gone. That they had family, that missed them, like the man in the wheelchair missed his brother.

There was a name at eye level.

I struggled to read it. I wanted to hold a name in my mind and my heart. It took work but I read the name 'Brian.' I felt a small victory. I'd read the name. Then I tried the last name and saw that it began with a Zed and I gave up without trying.

But 'Brian' was enough.

I held him in my heart. Whoever he was. However he died. Wherever he lay at rest. I hold him in my heart. Because he might have been a hero. But heroes can fall.

And they do.

Still.

In service to my country.

In protection of the freedoms I have.

Still.

They fall.

Like Brian fell.

Dude-ship Language

It happened on Jeopardy! Joe and I are fans of the show and, even if we are in the midst of a Netflix binge, will stop at 7:30pm, every evening to watch. Joe has a better breadth of trivia knowledge but I hold my own on categories that suit my interest. It's a fun watch. And, of course, who doesn't love Alex Trebec?

Anyways as they were introducing the contestants one was identified as a social worker. After the first commercial break Alex was there ready to do a brief and often hilariously uncomfortable chat with each of the three vying for the win. The first guy up was the social worker.

(Let me pause here and say that I will not be able to reproduce exactly what was said, I may get a word or two wrong, but I promise that even with a slight variance in the words I write from the words actually said, the thrust of this post is not changed.)

So, the first guy up is interviewed and he said that he worked with autistic kids in a school setting. He seemed like a genuinely nice guy who really loved his work. Alex asked a question or two and then again he mentioned the autistic kids. Suddenly though, it was like he remembered that he's supposed to use person first language, and just before Alex left and just after he said 'autistic kids' he paused and switched and said, something like, "oh, um, children with autism."

It was awful.

The change in wording to person first language drew much more attention to the autism than did his natural chat about the autistic kids he worked with. In talking about autistic kids in the tone and style of the conversation it was about kids and it was about autism but it wasn't about ... well it wasn't about shame, and a kind of propped up value of those children. The moment he switched to the person first language he drew attention, or the language he used drew attention, to the difference of those kids, to their need for 'propped up value' and the need for their personhood to be mentioned because it couldn't be assumed.

It was awful.

I'd never seen the difference between identity first and person first language so clearly before. The difference was stark.

Now, I recognize that there are people and groups who really disagree with identify first language and indeed I use it all the time in professional forums. It's expected of me and it's a battle I'm not prepared to fight at work. For me at home, in my own world, I use identity first language, most of the time but not all of the time. I never use 'Down Syndrome' kid, for example, I always used kid with Down Syndrome. I'm not sure why but linguistically it seems easier to say and I think the word syndrome makes it something such that personhood needs to be mentioned. I suppose it's a person by person and disability by disability choice, the language that is preferred.

But for me, disabled dude, is fine. Though I'm as far as it's possible for an old guy to be from 'dude-ship' but hey, I get to call myself anything I want.

The Coalition of The Different

I've been afraid of this morning for a long time. I always believed that Trump would win. I said this at work a few days ago and was challenged, "Every poll says that Clinton will win, how can you say that?" I was asked. But before I could answer we were called back to the task at hand.

My answer would have been that the only thing that I have ever seen unite a community is hatred. Working at a group home a couple of weeks before it opened. Getting it ready for people to come home from the institution, I walked from the subway to the house. They had fought against the home, the neighbours did. They fought hard. And they hated us. Those who worked there. And those who had been locked away in shame and fear would come home to hate and unwelcome. Hate pulled a community together.

It would be my first lesson in the depth of hate that exists for difference but not the last.

Coming out and marching in the first gay pride march in Toronto. People threw stones at us. People grabbed garbage off the street at tossed it into our faces. They called out names. Their faces showed us their hearts and their hearts were twisted and angry. My own heart struggled to find pride but it couldn't it just beat in fear, deep, deep fear. Of the crowd, of the new photographers. Would I be hurt? Would I have a job to go back to. Strangers came together, on the street, united in their hatred of us.

I could go on.

About fat ... and the permission it gives people to be hateful.

About disability ... and the permission it gives people to wish me dead.

I keep hearing that Trump won because it was 'the small guy' against 'the elites in government.' No it wasn't. It was those who hated this group, united with those that hated that group, united with those that hated all groups. It was, from the outset, a movement based on hate. That's been clear all the way through.

A coalition of 'the different' will never defeat a coalition united by hatred.

Never.

Love does not defeat hate.

But love can power resistance. Love can turn hearts. Love can cause deep reflection.

Love does have power.

Inclusivity as a concept builds and rebuilds and rebuilds.

Because of these things I think that tomorrow might just be OK. I may not have been surprised at the level of hatred expressed in the election of a man who's primary skill is bluster, but he just might be surprised and the strength of the resistance that's coming.

Because it is coming.

I'm Allowed

I read a post on Facebook by a Mother about her teenage child, she wrote that there were times she wished she never had kids. Then she explained in detail what her son did that made her so angry.

I'm not in her situation, I don't know her pressures, but what he did didn't sound so awful to me. However, what worried me was that this 'I wished I never had kids because the one I've got did something than angered me.' kind of post is so incredibly personal and so incredibly public. I wondered if the boy would ever read this. Would he see the anger in the post? Would he see the wish that he hadn't been born. Is momentary anger an excuse for the public humiliation of your child?

I'm not a parent.

I know that.

But I'm a child of a parent.

I'm not a parent.

But I occasionally provide care for children.

And I'm allowed to wonder.

I was sitting in a food court. Across from me was a mother with her child who had a physical and intellectual disability. She was seated beside him in his wheelchair. She was with a friend and they were meeting for lunch. At one point the boy in the chair dropped something to the floor. She got flustered from being interrupted in her conversation by needing to pick it off the floor. She said, to all listening, "If I'd known he was going to be like this I would have ..." She stopped herself. She looked around, "I'm sorry," she said to her friend, a little loudly, hoping others would hear, "he's a lovely boy and sometimes I say stupid things." Then she looked at her son, and whispering lovingly, she said, "You know I love you just the way you are."

I'm not a parent.

I know that.

But I'm a child of a parent.

I'm not a parent.

But I occasionally provide care for children.

And I'm allowed to be impressed by a woman who knows what words do, a woman that can stop words mid-sentence, a woman that can apologize for what she realized she almost did.

I'm allowed.

Most of You

"Good for you!" her enthusiasm broke through my concentration as I compared ingredients in one can of veggie chili with another. I like shopping. I like looking at prices and products and making informed decisions. I don't like my disability giving people some kind of perceived permission to break into my life, grab my attention and yank it somewhere else. I looked up at her. Smiling. Nice. "I've noticed you pushing yourself around the store. Good for you!" I've written before about how this kind of creeps me out. Like someone announcing they've been peeking into your world and watching you. I nod.

"Most of you people seem to prefer being pushed around rather than pushing yourself, nice to see you putting effort in."

Smiling? Nice? My opinion is changing.

Before I go on let me say that the store seemed to be chock full of wheelchair users. It must have been 'Cripple Day' or something because there were a lot of people there. One used a power chair. One was being pushed by someone else. Three others were pushing themselves. Now I know that on any given day with any different group of disabled people those numbers could be very different.

"Having a disability means that you put effort in every single day, if not in one way, in another," I said.

"Well, I just wanted to say that I'm cheering you on!" She had noticed my tone and this was her parting shot. I don't think she saw it as a shot, but it was.

This is the problem, isn't it?

People don't hear what they say in the way we, or at least me, as disabled persons hear it. I hear insult and prejudice and intrusion. She hears compliments and encouragement.

I'm not sure how to handle these situations. I want so shop, not give a master class in disability manners. I know these are opportunities for learning but I don't want to be forced to take every opportunity for teaching. I just want to know which brand of chili I'm going to buy based of a very strict criteria that I apply in making this decision.

I know that she meant this to be a pleasant interaction, I'm sorry that I couldn't pretend that it was.

I used to be able to pretend.

But I can't any more.

I'm not sure if that's a good thing or a bad thing.

But it is what it is, at least at this point in my evolution as a disabled person who likes to be out in the world but not always part of it.

That Explains Everything

So, I was listening to someone as they told a story. I was part of the group and, like everyone else, was enjoying the ease with which the story was being told. The punch line of the story ended up being that the main person in the story ended up having an intellectual disability and "that explained everything."

In the story the person was a little off, a little different, not quite comfortable in the social situation that he had found himself in. He bumbled a bit. He stumbled a bit. At one point he kind of startled the story teller - the kind of startle that ended up in the encounter becoming an anecdote to be told in spaces like this to people like this. The story teller obviously knows me and knows that I have a disability but felt that, as my disability was different than the guy in the story, I'd enjoy the humour. But instead I didn't. I found it disphobic and ableist at the same time. My face showed offence.

Yes, we've talked about this, but that's not what I want to write about and some encounters need to remain private.

I want to take issue with disability "explaining everything."

Everyone else laughed at the punchline and understood inherently that somehow disability, in particular intellectual disability, is an explanation for some things. His behaviour is off because he's off. His actions were different because he's different. He bumbled and stumbled because that's what 'those people' do.

I don't accept this.

People with intellectual disabilities are not a homogeneous group, one just like the other. Intellectual disability itself takes may forms and affects everyone differently. Everyone with Down Syndrome isn't happy. All people with cerebral palsy aren't wheelchair users. Right? Right.

When anyone thinks that a group descriptor, race, sexuality, gender, religion, 'explains everything.' They are wrong, it explains only one thing - that bigotry and bias are behind the assumption.

One of the political leaders in the election to the south of where I write this loves to talk about 'The Blacks' or 'The Gays' as if there is such a thing. Oh yes people exist in those categories but I am a very different 'gay' than many of 'the gays' that I know. I'm different in the same way they are different from mainstream but our sharing difference doesn't create sameness. Well, except I do really like Judy Garland.

"That explains everything."

Um.

No it doesn't.

Shut up.

The World And Me And The Woman Who Brought The Water

I fell into conversation, a feat in and of itself, with a woman pushing a heavy cart along side me while I pushed myself, both of us struggling with the plush carpet. She was remarking on how difficult the plush made it for wheels and I was agreeing. It's been a couple weeks now that I can talk while working hard pushing myself either on carpet or up inclines. For the longest times nodding and shaking my head were about all I can manage, I've a bit more breath now. We both agreed that what would be good for me would be good for her and for a right many people. Nice chat with someone who 'got it' the fact that she 'got it' for different reasons wasn't relevant.

I made it to the room I was going to present in and pulled myself into the table at the front of the room. I was getting my notes ready for review when I saw her come into the back of the room. She was part of the hotel's team that was providing service to the conference. She saw where I was sitting and said in a voice that I could tell she's used before on conference goers who didn't quite know what to do or where to go, "Oh, that table is for the teachers, everyone else sits here," she said pointing to the other tables. I would have thought that was obvious but I've been to these a thousand and one times, I know first time attenders can get quite thrown off.

"I know," I said, "in this case I am the teacher."

She stopped and gaped at me after a second she said, "I'm so sorry for staring but I've never seen someone ..." she was lost for words. So many people simply don't know how to refer to someone's disability and she didn't want to offend me. She took a breath and dove in "... someone in a wheelchair sit at one of those table. I've been doing this for a long time. I've never seen someone, um, you know, teach here."

"Well, it's about time, then, isn't it," I said laughing.

"Far past time," I'd say she said, "far past time."

Then she wished me good luck on what I was teaching and started out, she stopped again and said, "the world has changed for lots of people, I'm glad it's changing for you too."

I think that was one of the kindest things anyone has said to me in a long, long time.

Pooing VS Participating

I wasn't very nice to someone today and I'm not happy about it.

Sometimes I'm just a jerk.

I went into a session, that I really wanted to attend, and found, again, that there was no seating provided for wheelchair users. Conference hotels have never, ever, in my vast experience of them, taught their set up crew to include one or two seats in a room that are accessible to wheelchair users. So, I go in and, of course, there was no where for me to sit except in the wide aisle between the tables on both sides of the room.

This meant several things:

1) I stuck out. I get enough attention for difference I don't need additional attention because of being forced to sit, entirely on my own, in the middle of a freaking room.

2) I had no where to set my stuff down so that I could take notes efficiently. I'm there to learn, I think best with a pen in my hand,

3) I tried to stay at the back of the room to stay as out of view as possible and was told to move because I was blocking the door. No non-disabled person who came and stood in the same spot was ever asked to move. I'm a fire hazard, they are just exercising their right to be wherever the frick they want to be.

So I was unhappy. Not a good way to start into the learning process. A woman, very nicely, offered to get out of her seat and give up her spot. I didn't want her to do this. I didn't want to be in this situation. As I was with the room volunteer when she offered, a volunteer that looked hopeful that this would be a solution, I said, "No thanks, I don't want pity, I want planning."

Rude right.

I don't think she was offering pity.

I don't know if she heard me but I hope not. But even if she didn't my dismissal of her offer was, without question, rude.

Finally a fellow beside me, without my noticing, moved himself over which freed up an end of a table. I saw a spot to put my stuff so took it and thanked him for having moved.

But throughout the session I listened, and I did learn, it was a good session, I thought about my reaction to the woman who kindly offered to move and the jerk face response I gave. Like, really, it wasn't her fault and she was offering a solution.

Sometimes I can be such a jerk - to the wrong person.

And yes, of course, I did speak to people from the planning committee about the issue. But here's the thing, I don't think it will help. Not because they aren't good people but because conference hotels work really hard to make bathrooms accessible and then, in their conference rooms, act like we come to the hotel to poo but not to participate.

Isn't that odd?

But still.

I was rude.

Shouldn't have been.

Need to stop being a jerk to people who are just being nice.

Separate But Equal

I'd done with fiddling, for now.

No doubt I will go at it again tomorrow morning. I'm going to be giving a workshop at NADD here in Niagara Falls. I've been playing with the presentation while looking out my window which directly overlooks the falls. I'm trying to present first the idea of 'disability context' ... which simply means realizing that people with disabilities live in a vastly different social world, a world that must be considered in any analysis that considers behaviour or mental health. That social world can be completely invisible to the non-disabled and as a result, instead of understanding, professionals try to 'ablesplain' it away - or worse, lay false claim to it through false, and often very patronizing, equivalency.

I will probably be the only person in the room tomorrow with a visible disability. I find this part of my presentation to be troublesome. How do you make something that is deadly serious about the lived experience of disability not sound like whining or griping. Because, as you know, it's much more than that.

But I'm done with fiddling.

Trouble is, I've been thinking about it so much that all I can see is the differences in experiences that others will have at this conference than I will have.

I'm staying at a different hotel because of poor access issues I've encountered in the past from the hotel it's at. It may have changed, but would you take that chance? So I'm physically separated.

All around me people are walking about. We went out to go for a stroll and the sidewalks and curb cuts are impassible. We got a few feet and turned back. So I'm physically confined to my room.

The shop in the hotel I'm staying at is across a stretch of deep plush carpet. I made it over and had to turn around. I was too tired to shop.

It's a different kind of experience.

And that difference matters.

But.

And here is where I'll stop for now, I have a lovely view.

Where I'm At

It's dark. I'm still coughing. Another morning of feeling a little sick and a lot uninspired. I started to feel badly on Joe's birthday. Poor man. It was his 64th birthday and I had to cancel everything planned and simply go to bed. We were in Edmonton and I had lectures to give, and even though the organisers offered to let me cancel one of them to go rest, I made it through. Got home and it went from bad to worse, we both developed horrible coughs and have since been resting as much as we can and simply trying to get better.

I've written through colds and coughs before but this time I simply couldn't. I found myself just tired. I found myself just not wanting to write another story about -

The couple who sat at the table behind us loudly discussing my weight, my disability and making jokes about who they assumed I was and how they assumed I lived my life.

The attempt to go into a place that I'd been looking forward to, a place that lists themselves as accessible and finding that they had both a single step into the building and even if they didn't an interior so stuffed with stuff that I'd never get through.

The mother who used me as a bad example for her son who was insisting on having a candy bar.

The drunk who made a big deal out of me sitting in a bar, wanting to 'include' me by making me even more visible by his behaviour.

Just couldn't do it. Told so many of those stories before that I just couldn't do it again. There is, I realized while sick, such a repetitiveness to the daily doses of discrimination that disabled or different people experience. A numbing kind of wearing down of self esteem and self worth and the development of sensitive touch spots on your soul that comes with the drip, drip, drip of ableist bullshit. I came to the computer a couple of times to write and thought 'why bother' and 'what's the point' and 'how does this help' and then got up and left.

I'm still there a bit.

I don't know why doing this matters or if it matters or how it matters. I love the community around this blog, without question, but am I helping that community or simply using it to feel less alone?

So, I'm not over my cough.

And I'm not over my malaise.

But there you have it, my first post in days.