Monday, December 18, 2017

My Saturday Outing

The Christmas pantomime has become a tradition for us and we were looking forward to it. Because it's nearly the holidays, I got sick, of course. It's my second cold this season. Fa La La-cough cough cough. I decided the night before that I was going, cold or not. In the morning the whole thing seemed daunting. And let's stop here to for a bit of frank honesty.

It takes a lot more work, and a lot more worry, to do stuff like this when you have a disability.

There.

I said it.

I worried, let me count the ways:

1) would we get a disabled parking space anywhere near the theatre
2) would the restaurant that we chose to go to beforehand be accessible, toilets and all
3) would there be a lot of snow on the sidewalks making the trip treacherous for both Joe and me
4) once at the box office would the tickets really include a disabled space, they often mess up the tickets, theatres do.
5) if we do get accessible seating, we know where it is, it's down a huge and quite steep, sloping aisle, will I get down safely in my manual chair.
6) how the hell am I going to get back up
7) if we didn't get accessible parking where am I going to get picked up
8) how many people will be bothered about the space I take on the 8 different elevator rides I'm going to have to take to make this happen
9) will I find a place to pee somewhere in between lunch and the show starting
10) will my being in a wheelchair cause inconvenience or stress for the kids.

I've stopped there because I think you get the point. We had managed everything, including an excellent parking spot and half the elevator rides. We were at our seats and the next big thing was going back up the really steep aisle between the hill of seats that rose behind me.

During intermission I asked Joe how he thought we should tackle it. I'd never been to the theatre in my manual, we'd always come in my power chair before. I knew I couldn't go up forwards, I've been working out, sure, but it's really steep and it's thickly carpeted. I wondered about walking up a couple of steps, sit and then try again. I'm a wall walker and a wall was there to be used. Joe said, "Just go up backwards."

This is something I've been doing for a while now on very steep ramps or curbs that don't have a level entrance. I'm pretty good at it.

We waited until there was room and then back up I started, going backwards all the way. Joe, Marissa, Ruby and Sadie, helpfully called out the number of rows I had yet to go, which was encouraging for me to hear the numbers steadily go down. I use my arms, my hands, my feet and my legs, and they all worked smoothly. I crested the top and, though I had to stop and catch my breath, and have a coughing fit, I made it.

We had had a wonderful time. Nothing I'd worried about came to be.

But, and let me be clear.

Every disabled person reading this knows, 'well, that's this time,' the next one is the next one and there is no predicting that the ticketing would be right or the parking available or the sidewalks passable.

It's part of having a disability.

But then, again, I realize that ... doing damns the darkness ... and it was true, my memories of the whole trip will be bathed in the light created by the sound of the kids BOOing the mean character and cheering the good one, or the sound of them singing along to an 'A Christmas Carol' version of YMCA while making the letters with their arms, or their groans at the bad puns.

But I also have a private memory, one I'll share here, it's of cresting that long, steep, carpeted aisle and realizing I'd made the top. I still had my power chair, but this time the power source, was all me.

All me.

Sunday, December 17, 2017

"But," He Said

"Who design's this shit anyway," he said angrily as I asked him to move so I could get through the passageway from the restroom and into the restaurant area. I was taken aback because he had been nice and accommodating when I'd asked him going in. He had to know I'd be coming back. He saw the look on my face and said, "No, no, I don't mind moving, don't worry about it."

"But," he said, "it's got to be awful for you to have to ask ten or twelve people to give you space when you want to go pee." He was right, of course, it was awful and even when people are nice, it's still awful. This particular set up had a counter with tall chairs on one side of the corridor and small tables on the other. They were making space every where they could for people to eat. On the way in, it was completely impassible because the people in the tall seats, they were all full, and the people sitting on the corridor side of the tables all needed to move over a bit for me to be able to get by.

And I had gotten by, I had asked each of them individually, because each of them waited to be asked, unlike some situations where people see and move and create a path for me to get through. Then I only have to thank all of them. This time however it had been a ask and thank situation with each person, except the guy who spoke who had simply moved his chair when I was on my way in.

"They know that the disabled washroom is down here, they know disabled people come to this restaurant, who the fuck designs it so you have to ask strangers to help you out when you go to the restroom?" I was gawking at him a bit and he said, "What?"

"You get it," I said, "I don't encounter that often."

"Oh," he said, flummoxed by my simple statement.

I then asked him if he had a sibling or relative or friend who was a wheelchair user, he said that he didn't. "Then how did you even notice?" I asked thinking it a reasonable question, usually people who have at least a hint of understanding have had some sort of experience with disability or with mobility issues.

"How did I notice?" he laughed, "I've got eyes and common sense, that's all you really need isn't it?"

I wished him good day and thanked him for understanding which he brushed off with, "You don't have to thank some for decency, or at least you shouldn't have to."

I shouldn't have to.

But I'm made to.

All the time.

Saturday, December 16, 2017

What Opinion Isn't

I was harshly criticized recently for publishing something on my Facebook page that someone else thought was 'inspiration porn'. I admit that when I posted it, I saw that it could be taken that way, but there was something about the intense dignity of the child, who was the subject of the video, that I wanted to share. No, I didn't talk about that on my posting, I had this rash feeling that I was tired of always having to explain myself and my reaction to things. I am allowed to have multiple motivations and I am allowed to have a dissenting opinion and I am allowed to see things differently than anyone else. So I posted it.

Now, I'm always open for debate and disagreement. I'm also open to being wrong. I don't find admitting error to be losing face, I find it to be liberating. However, I don't, can't and won't engage with someone who opens with an attack. I also have difficulty engaging with people who decide that they can decide on me, or be disappointed in me, or to dismiss me, because of a single post. I am more than one blog, one post. I am my history, as are you. There are people I'm still friends with even after we've had a really big disagreement or argument precisely because they are more that that moment, they are part of a history. Is it possible for one single disagreement to end a relationship - I would imagine so, but it would have to be a big one.

What I have loved about the readers of this blog is that there have been disagreements in the comments section here and on Facebook, but people have been, by and large, civil and willing to discuss the issue. I can't tell you how important that has been to my own growth, I've changed my language and my practice simply because I've learned from disagreements that lead to discussion. I can't learn when people are shouting at me.

In this particular interchange the person said that they needed to 'knock me down a peg or two.' I laughed out loud, literally actually, because I'm already a fat, gay, wheelchair user, I don't have a lot of pegs to be kicked out under me!

Sometimes it matters that we all treat each other like we matter. I find it unsettling that in a world of such hostile ableism that we can be so mean to each other, over something that really, in the end, is a matter of opinion.

And if we should be learning anything from the times we live in - opinion is not fact.

Friday, December 15, 2017

Silent Night: A School Pageant

We arrived at the school with Ruby and Sadie in tow. We wanted to be there early so we could get the disabled parking and I could get inside before people started streaming in. The kids needed to be there early too, so we picked them up and they rode with us. Ruby and Sadie ushered us into the gym and Sadie pulled out a chair in the front row so I could fit my chair in. Then Sadie disappeared upstairs. Ruby heard me mention to Joe that I'd forgotten my glasses so she picked up the program and read it to me. In doing so she pointed out three things: which one Sadie was in and which ones she was in. Then, she pointed out a third, simply called 'Silent Night' and said, 'You are going to really like this one.' Now she disappears.

The gymnasium of the school was packed. Standing room only. We joked with Marissa when she arrived that we could have sold the seat we held for her for over a hundred bucks. We all noticed the buzz of excitement in the room, it seems that everyone there had a 'star' in the show and were eager to get it started.

When the show began it was a bit more like a rock concert than a Christmas pageant. The crowd cheered at the end of every performance and that buzz, electric buzz, was there. We all joined in and were part of the sound in the room as comments were whispered about the songs, the acts, and the performers. The teachers all sat on a small stool directly in front of their classes and provided direction and support as needed. They were a show in and of themselves, all walking away incredibly proud as the room cheered the children on the stage.

Teachers create opportunities for their students to shine. I hope everyone there let a little of that light fall on the shoulders of those who made this happen.

I was curious about the third performance, why had Ruby said, "You are going to really like this one." We waited as they got ready behind the curtain and then the curtain opened. There were three or four rows of students sitting in white shirts and black pants. They looked like what the were, a choir. The music started and a lovely version on 'Silent Night' played. The whole class sung the song in sign language. Real effort was put into this because the kids signed in virtually perfect unison. The sheer beauty of the song in sign did something to the room. The buzz was gone. There was quiet. The students had captured the attention of the entire room.

Me, I had to fight back tears. I don't expect inclusion or recognition of disability any more. Here, in this pageant the kids had sung in French, and Italian, and Spanish, and Sign, as well as English of course. It matters that they did this. It matters that the teacher thought of if. It mattered that the kids performed it. It mattered that they respected sign language as a language just as they had done with the other languages.

Social change comes from moments like these.

Civil liberties comes from moments like these.

I'll bet at least half, but probably many more, of the families driving away in their cars will talk about that one performance. They will talk about being surprised at the complexity of the signs, they aren't just gestures, and the idea that one can sing in silence, that there can be beauty in difference, that deaf people have a legitimate language that needs respecting.

When it was over Ruby asked me, before she asked me about how I enjoyed her performance, Sadie's performance, what I thought of Silent Night. I told her she knew me well. Then we all chatted about the show and the kids performances, which were awesome, and made our way towards the door.

I had an opportunity to speak both with the principal and the teacher who lead the signing choir. I told them both about what it meant to me and how pleased I was to see that particular performance. The teacher told me that she'd tell her class and that they'd be happy that it had meant so much to me.

I like going to the girls pageant (after I got over myself ... but you'll have to rove back through the blog to find out what I mean) because it's a friendly and welcoming school, fully accessible to me, and because they seem to actively work at respecting diversity. It's nice to roll through the doors into a building with the full assurance that those on the other side of the door are truly glad you are there.

Thursday, December 14, 2017

'Me' Matters

Well, it's official, working out does not help when your tires spin uselessly no matter how hard you push. I found it really frustrating to be stranded midway down the driveway between the car and the house. I had forgotten to put on my hat and I'm sure steam was rising off my head as what hair I have froze from the little damp that was left from the shower. I literally had frosted my hair.

I haven't been using my powerchair over the past many months, partly because I've been having trouble getting a new cushion and partly because I enjoy, really enjoy, pushing myself. The powerchair would handle the snow with no problem, but it increases my dependence on it's motors rather than my arms. I don't want to lose strength and then in the spring have to face a difference kind of immobility.

We're going to look into ways that we may be able to deal with the mobility issues but if anyone has ideas I'm ready to listen.

Tonight we are going to the kids Christmas pageant and even though I wouldn't miss it for the world. I have to admit the thought crossed my mind about the snow and the getting in and out of the building. I had to actively stop my thoughts in their tracks.

I have an odd way of being in this world, if it's something I'm fighting for that I believe in, I'd never entertain giving up. But when it comes to me, I have a long history of just giving up. Maybe, I realize because I don't really believe in me, in the cause of 'me', in the need of 'me', maybe I give up on the person who was called a loser for many years of his childhood. Maybe I feel safer fighting for someone else, than I do for myself.

But I'm working on giving up giving up on myself.

'Me' Matters.

I say that.

Not quite ready to believe it.

Wednesday, December 13, 2017

Winter 1

We had a few inches of snow yesterday. I love the beauty of the first few snowfalls of the year. However, once I became a wheelchair user, my affection for snowy days slowly dissipated. Manual wheelchairs and snow don't even belong in the same sentence. My power chair, with it's big ol' wheels, that's a different story, but only slightly, it is as likely to slide or fishtail as a car is but unlike a car, you're sitting on it, not in it.

With the snow yesterday came my first opportunity to go out in the snow and do some daily kind of activities. In my head I had this constant, "Yeah, this will be fun." I said it over and over and over again as Joe was getting the car out of the garage. When he came back in and said, "So, you ready to go?" My answer was, "No, I'm going to sit this on out. You go on ahead." Joe nodded and told me that it was probably a good idea because of the snow and headed out.

Winter 1 / Dave 0

I knew immediately as he drove away I'd made the wrong decision. Oh, it was nice sitting in a nice warm house doing work that I enjoyed doing, but I'd made the wrong decision. I wanted to go and I didn't go. I let my fear of the process of reorienting myself to pushing in the snow stop me. I try not to let fear make my decisions for me. But sometimes my judgement gets pushed aside and fear speaks loud and clearly.

Now, when I could have had the first time over, I'm going to have to have my first time today. I know it will be hard, and I will have to work to be careful. Rolling over snow is tough, rolling over spaces thickly carpeted with salt is even harder. But I'm going to do it. I'm stronger than I have been in many years and my skill with the chair is at its peak.

So wish me luck.

As long as my chair doesn't morph into a toboggan I'm going to be okay.

Saturday, December 09, 2017

Ergometer

I was working out using one of the cable machines, it was set at a fairly significant weight, and my eyes were closed as I was exercising. All I was doing was counting the repetitions and, for me, that's easier to do with my eyes closed. I was at the number 28 when I heard a voice commenting about weight. I opened my eyes to see an elderly man, with a kind face, in workout kit.

Now I'm so used to people making comments about my weight, total strangers, that I put him in that category, what else could he have said. As the words started out of my mouth, my brain computed what he had said and it was 'You are lifting a lot of weight there." He was complimenting me on what I was doing and how hard I was working. But the 'retort' was on it's way out. I managed to stop what I was going to say but I was not able to turn the words into a statement that held any meaning. He looked confused, not about my words, which would have been understandable but by my tone, which I hadn't been able to switch, and it had been hostile.

So, I just behaved like a jerk whose words make no sense at all.

I continued on working out and waiting for an opportunity to say something to him, anything, to prove that I'm less of a jerk than he might think and that I can string a sentence together. None came.

This is no excuse but no one had ever spoken the word 'weight' to me in a complimentary manner. I had to realize that I was working with weights that are set at levels much higher than they were when I started and heavier that I though was possible for me. I was going to have to be careful.

Finally I saw the old guy using the machine I use every time I go, the arm ergometer, when he finished and headed back my way I said "That's a great machine, isn't it, great upper body workout."

"Yes, yes, it is," he said and smiled.

Nice old guy. Great that he's there. He's got the gift of encouragement.

I'm working to have better control over my verbal reflexes and to be more willing and more ready to think better of others as a starting point. 

Friday, December 08, 2017

Elevator

My office is moving in a few weeks and yesterday I was downstairs looking at the space the team and I will be moving into. We had a great discussion of set up and design and we talked about colour and furniture and all felt growing excitement about the move.

I mentioned that my only concern was the elevator and explained that how there wasn't enough turn radius when getting on at that floor because it's a smallish elevator. I had tried once before and simply couldn't do it. I'd have to take off my footrests to manage.

I offered to demonstrate, so everyone came over and I pushed the elevator button and then when the door opened, got on easily. I was mortified. After my big speech about how it was going to be something I'd have to think a way through, I got on simply and easily.

Over the next several minutes I thought about it. I had gone to that floor of the building only once or twice early on as a wheelchair user. It was really hard, impossible actually to get the chair onto the elevator without taking off the feet. I know that was true, I remember it clearly. The difference was that I am now a fully experienced wheelchair user and I know how to maximize space, even create space for the chair. It's something that happens naturally in my head.

I couldn't do it then.

I can do it now.

Now I have to wonder how many early tries and early fails have led me to decide that something is impossible not realizing that my skills would grow and being a wheelchair user is a skill based way to exist in the world.

I'm going to have to be careful about things I've dismissed as not possible. Oh, joy, more things to think about, that's work, but oh joy, maybe I've new experiences waiting behind doors I thought to narrow.

Thursday, December 07, 2017

I'll Take Etiquitte for $2000, Alex!

Joe and I have watched Jeopardy, the TV game show, since we first got together. We both enjoy it. Joe is much better at the game than I am, he has a broader range of knowledge being one of those people who like history and geography, so he slays me every time. Sometimes our knowledge surprises us like when they recently had a category called "Disney Princesses" we hotly anticipated those questions. After Ruby drilled this information into our heads and then Sadie reinforced it, we are pretty Princess fluent. It was true to, Joe and I were hollering out "Jasmine!" "Aurora!" as we aced the category.

But, sometimes Jeopardy not only involves questions and their answers, sometimes in little ways it gives a glimpse into what kind of facts are important, what kinds of things are current, and what kind of things that people need to know. This happened a couple of days ago.

The category was 'Etiquette," we were doing okay with the different questions, and then the $2000 clue was revealed. I was gobsmacked and called Joe from the kitchen where he was making us tea. He too was taken aback.

Why?

It was a question about disability etiquette.

This is an approximation of the clue, "a wheelchair is the extension of someone's body and therefore it is part of someone's personal ..."

Now the answer is obviously, "space."

This was the $2000 clue which meant that the writers of the show thought that this would be the most difficult question of the category. One of the players got the answer and play moved on.

Jeopardy!

A disability etiquette question on Jeopardy!

We must be making headway.

Here's to Alex and the producers and writers of the show for a few seconds of recognition that we have bodies and we have space and we have a right to have those respected. I'm guessing that they did more in that one question than they will ever know.

Wednesday, December 06, 2017

The Door

He was at a door that had swung shut behind him effectively locking him out. The door had a push bar on the inside which would have allowed anyone to help. The trouble is the anyone was me. I couldn't get to him. The stockroom was full of boxes and barriers which made it completely impossible for me to find a pathway to him. I was sitting in my wheelchair as he was gesturing, with increasing anger, for me to come and open the door.

I pointed to my chair and then to the blocked passageway. He didn't care he wanted me to come and let him it. It was cold. It was damp. There was no one around but I knew that some other employees were in the area somewhere. I had started loudly calling for someone to come and help. No one came. The area must have been fairly well soundproofed.

Now he's outright angry, furious that I wasn't coming to let him in. I felt horrible. I began to look if I could move or shift things to make a passageway. I tried but it was impossible, and even slightly dangerous, I didn't want stuff falling all over me.

Finally I heard the voice in the distance of the person that had brought me here to wait for them to try to find something for me. I shouted as loud as I could for "HELP!" He came running to see what was wrong and immediately saw his angry co-worked stuck outside behind a locked door. He immediately went to rescue him.

The door opened but the anger did not subside. He stormed passed me as I tried apologize and explain, because somehow I thought it needed explanation, that it wasn't clear, that I couldn't get to him because the pathway was blocked. He didn't even look at me, he just made a gesture brushing all what I was saying away.

I was left really upset.

I wanted to help him but couldn't. That is one of the most difficult feelings I have as a disabled person. Sometimes I'm in situations where someone needs something that I can't give. In an emergency I'm the one who needs not the one who helps. That's an ugly feeling. I would have loved to help. But boxes and barriers kept me for being able to. My ability to help, the thing that I really try to do, was compromised.

I don't know if he thought I could magically jump out of my chair and come and help. I don't know if he thought I was lazy. I don't know.

But I am disabled.

And I couldn't help.

I should be able to let this go but I'm having real trouble with it. What he needed was simple. So simple a child could do it. But I was not able to do even the smallest thing.

I hate this feeling.

Deep down I have to ensure that this feeling doesn't translate into anything more that it is. And that will be my work for the next several weeks.

Monday, December 04, 2017

Coming Out ... Going Out: An International Day of Disabled Persons Post

It was International Day of Disabled Persons yesterday and I wanted to do something to celebrate. I decided that what I would do that day, to make a difference, was simply: go out. For people with disabilities to come out, we simply need to go out. Existing in a public space is enough to challenge stereotypes and attack prejudice. To be different loudly, one need not say a single word.

We chose a mall that was a bit of a drive for us.I wanted to lap the mall so that I could both exercise my body while exercising the minds of those closed to the idea of disabled people being out and belonging in public space.

All the disabled parking spaces were taken so Joe dropped me off at the front of the mall, right beside a fairly steep and fairly long ramp. I got out, had Joe pull the car away so I could back up to give me space to build some momentum and then up the ramp I went. One fellow offered help but respectfully responded to my 'No, I'm good.'

I went through the large sliding doors with two young teens. One of them turned to me and said, "You should really be wearing a jacket." WHAT?? Disability is still seen as a diminisher by some. I said, "I'm old enough to be your grandfather, would you speak to him that way? And by the way, I'm a stranger, don't talk to strangers." So I begin my International Day of Disabled Persons by being chastised by a child for not wearing a sweater.

Then, the lap began. I've been pushing long distances for a while now and can really get up some speed. I was enjoying the physical movement. I was enjoying whipping around slow walking people and surprising them. I left them in my dust. It's International Day of Disabled Persons and I'M HERE, I'M OUT AND I BELONG. You may think this silly, but I don't.

Disabled people are in a continuous battle to claim public space and to claim belonging. Because we are diminished we are also dismissed as full human beings, with our own agency and with our own lives to live. I believe that every time one of us is anywhere 'they' are, we are agents of change.

Non-disabled people will never know what it's like to go out into the public realm and know, with certainty, that you will be constantly reminded of outsider status. Staring. Pointing. Giggling and then, of course, there are the weird kind of social interactions that come from people trying their hardest, and with great effort, to be kind. Like a young teen advising an adult man in a wheelchair about his clothing.

So I spent just over an hour lapping a large mall and purposely, intentionally, being OUT while I was out.

That's what I did on the International Day of Disabled Persons and that's what I do pretty much every day. Because I have to. This is my community, and I will claim it and claim it and claim it again, and I'll keep doing so until it's ours.

It's what we do, as disabled people, to make change.

There is an everydayness to the struggle for equality for people with disabilities and differences.

I saw lots of other people with disabilities in the mall we went to, simply going about their business, I saw people watching them in the same way they watch me. We are our own Public Service Announcement ... and people pay attention.

Which is why...

We will win.

Sunday, December 03, 2017

Manda and the Day

Manda was a woman with Down Syndrome who I met years and years ago. If you read her file it would have said something like, "She was a lovely, kind and patient woman who enjoyed being included in conversations, being 'one of the crowd' with family and friends and being listened to when she spoke in her low growl of a voice." That being included in conversation, hanging with her friends and being listened to was seen as something to describe her, not every single person alive, it a big tell about how people with intellectual disabilities were seen back then.

She and I along with two others, were scheduled to walk up to a corner store, buy some snacks for the program and then walked back. This counted as both an outing and teaching about money. What it was was a walk. Manda was happy on the walk because one of her best friends, a much older woman with Down Syndrome was part of the group. She liked and admired her. They walked together chatting behind me. I had violated the 'you must walk behind them so they are in sight at all times' rule. I'd done this walk before, I could hear them behind me, I felt that every now and then a bit of privacy might be nice.

We got to the store and when we came in there were two other customers in the store, a boy and a girl, both in their late teens. They began snickering right away. They pointed at them and whispered jokes that they both found very funny. They were standing at the head of an aisle blocking the passageway. When Manda's friend tried to get by them, the boy said, "Say please you little retard," she started to cry. Manda walked quickly over to her friend to comfort her. She stopped for just a second as she walked by the boy who had said the foul word and who had spoken both with superiority and disdain she smiled at him and said something he couldn't hear. Her voice had always been a quiet one.

He leaned down to her to hear what she was saying, laughing all the while. When he was near enough she wound up and slapped him hard across his face. He screamed in shock, HEY! But he screamed to her back she was with her friend and she was comforting her.

His girlfriend turned to me and said, "Aren't you going to do something?" I said that I wasn't going to do anything. Not at all. "Isn't he going to do something?" I asked, when they looked blank I said, "Apologize."

I was told to Fuck off in a number of different ways.

Back in those days I knew little about the disability movement, about people fighting for freedom and access. I had never heard of an International Day of Disabled Persons. I was young. Very young.

Even all these years later, I remember this moment. The moment when a slap awoke in me the first understanding of rebellion against prejudice. It revealed to me that people with intellectual disabilities feel the actions of others and that words and attitudes can be as destructive as any other form of violence.

While this day, International Day of Disabled Person is tagged on the calendar today, it isn't limited to or by a time and date. It happens every time an action is taken that effects even a small part of the world around us. We to see that every day, every opportunity we have to make change, to fight prejudice, to actualize anyway we are part of an international movement. We are not alone.

The theme of this year's day includes the words 'leave no one behind.'

We watch out for each other, across the disability spectrum, ensuring that we all, like Manda, stand up for our friends, stand up to bullies, and strike a blow for respect and dignity.

On the way back to the program Manda asked me, "Are you going to tell?"

"Not today, and to no one here," I said.

She patted my arm.

In that moment, I was no longer staff, I was co-conspirator, and God that felt good. 

Saturday, December 02, 2017

Help Unrequested

There is someone that I dread running into.

Just dread it.

It's not that she's a horrible person, in fact, most people just love her. They speak of her kindness and her thoughtfulness and her care and concern for other people. They suggest that there is a selflessness about her that they really admire.

I suppose that's all true.

To them.

Of course I see all those things about her. Before I became disabled I admired them, thought I should be more like her. Now, I still think that in many ways I should be.

But.

And it's a big but.

It feels very different being on the other side of her warmth and caring. Whenever I come into a room, and she is there. She practically bowls Joe over so that she can be a help to me. She inflicts care on me. I feel the intrusive nature, the needy nature of her actions. I'll turn my head to talk to someone and when I turn back there will be a cup of tea, a bowl of soup, a piece of cake, shoved into my face. We almost always meet at parties and social gatherings and when she and her help are there, my stomach falls.

People often tell me that I'm very negative about people's help and kindness. I don't think I am. I do need help. I do need kindness. But I only need them at my own discretion, not when people decide that I have no personal agency. Websters defines this as " the capacity, condition, or state of acting or of exerting power." To decide when I need help, what I need help for, how that help with be delivered and how I am supposed to respond to help unrequested, makes me someone different, someone moulded into an object, a thing, like a teddy bear being fed, or not by the whims of a child not on the wishes of the bear.

Help asked for, help given in response of a need I identify, I am so grateful for, like the woman who responded when I needed something that was just out of my reach.

Like the staff at the gym who help me 5 or 6 times a visit when I ask for help with equipment, with turning machines accessible, with adjusting the grips on the cable machines.

I need help from strangers.

I get it.

But do you. Help unrequested is something very different. I'm the acted upon. 

"She means well."

I'm told.

But does she?

I've talked to her about it. Told her that if I ever need her help and she's there I'll ask her. She looks at me curiously.

Like a teddy bear that just spoke.


Friday, December 01, 2017

Out Loud!

Today is a big day for me.

Many of you will know that I am the founder and co-editor of The International Journal For Direct Support Professionals, published in English, French and Spanish, which reaches a broad international audience. Out today is an article written by two miraculous people, Dr. Yona Lunsky and Dr. Anna Durbin, on the subject of supporting people with intellectual disabilities around issues related to HIV and AIDS.  This matters to me. Really matters.

Several years ago, at home, at night, I received and phone call from a social worker who worked far to the north of Toronto. He was desperate. He was supporting three gay men with intellectual disabilities. All of them had been having unprotected sex in parks and public restrooms in the small town in which they lived. When he began supporting them they all told the same story. They couldn't have condoms because if they were caught with condoms, and caught they would be because of the intrusive nature of supports, then they would be in trouble for being sexual and they might be discovered for being gay as well. For them, safe sex, was without condoms as evidence and done in secretive places like behind a public restroom door. They lived in fear. Fear of the agency for finding out they were sexual and that they were gay. Fear that they may have been exposed to HIV.

I was asked if I could, as a person, not as a professional, they had no trust in professionals with affiliations, support him is supporting them to get tested. I agreed to help. After contact was made with an anonymous testing site an appointment was set. The men were readied for the reality of the test and the possibilities of the results of that test. They were good men, they were responsible men, the wanted to know and they wanted to figure out how to change their situation so that they could reduce their own risk.

I met them.

We all went to the appointments and then ... we were done.

On the way back to the car, we suggested that they might want to stop into a gay bar. None of them had been in a place that welcomed  people who, like them, were LGBT. We went in and took a table and order beers for everyone but the driver. We sat and talked. As we did, the men talked about the test and their fears and what it was like to speak without whispering. They were awestruck at the place and at the easy way that people simply were who they were. The conversation was overheard by others at other tables. But there wasn't fear of the fact that others heard because the realization was that others knew exactly what they were feeling.

A couple minutes into their chat about their fears a gay man walked up to the table and dropped 5 condoms, one for each of us, on the table. He nodded, smiled and left. This started a parade of men coming by, dropping condoms, or wishing them well as they waited for their results.

Inclusion.

Welcome.

Belonging.

These three things brought their anxiety down. They knew the wait would be hard but they knew that they could do it, and whatever the result they would support each other and that their was a community that would support them.

Now these years later, we are publishing this newsletter today on World AIDS Day, we are bringing the discussion into the dark corners of the sector serving people with disabilities ... corners that still repress sexuality, repress education and force men and women into a lifestyle of shame and secrecy. A dangerous lifestyle.

If you would like to receive the article or subscribe to the journal (both are free) email me at dhingsburger@vitacls.org and let me know if you want subscription or single article.

We are also going to do a webinar on the newsletter hosted by the National Alliance for Direct Support Professionals.

Go to this link to sign up (and yes it's free too)


Please register for Let's Talk with Dave Hingsburger: December, 2017 on Dec 20, 2017 2:00 PM EST at:  

https://attendee.gotowebinar.com/register/7478734443151410179

After registering, you will receive a confirmation email containing information about joining the webinar.


I am thrilled that this is happening, and thrilled that those men, who all tested negative are now living positive lives fully supported and accepted. I never saw that coming.


Nor this.

Nor this.

Tuesday, November 28, 2017

back to but ...

I ran into a couple of guys with intellectual disabilities yesterday afternoon at the mall. I was there doing a lap around the upper and lower portions, it's a distance of about 1.6K. I had decided to go because I ate way too much at a potluck meeting and decided to try and wrestle some of those little savoury pastries to the ground. I saw them just as I was finishing the bottom portion and slowed to a stop.

They were busy looking at something on display and it took a few seconds for them to realize that I was there. They both shook hands with me and their staff introduced herself to me. It was all very pleasant but ...

Well, let's back up. One of the fellows is someone I've known for a while and whenever he saw me he always lit up and wanted to stand and talk. Mostly this was good but sometimes I was busy and listened more out of politeness rather than interest. This is NOT about disability, the same can be true for anyone. Have to say though that his excitement at seeing me left a really pleasant feeling after we parted.

Let's go back to but ..

But this time, it was clear that I was interrupting what he was doing and that he was busy and he was listening out of politeness not interest. The shoe, metaphorically because I don't wear shoes, was on the other foot. His life and his friends and his day was important to him and I was like the person who doesn't stop talking when everyone around really wants him to ... yikes.

I love how as people become part of their own lives ... I believe that people have to integrate into their own lives and their own personality and their own hearts before integration and inclusion can happen anywhere else ... people like me become less important.

I was less important.

My attention didn't matter as much.

Hallelujah that's what we're supposed to be aiming for - and damn and blast, sometimes we succeed.

Monday, November 27, 2017

"Igotry" and the Clairvoyant Saint

I'd said 'Hello' to him the first time I saw him pushing himself around the mall, even though I knew he saw me he completely froze me out.  "OK, then," I thought, and didn't acknowledge him again. It annoyed me a little bit because he's a wheelchair user himself. He's maybe only 10 years younger than me. I don't know any disabled people in my new home town yet. And, because of that, it can be lonely. Being the 'only one' in a crowded space is the oddest kind of feeling, it's hard to explain.

When I first moved here I used my power chair to go over to shop at the mall, it's quite close and I could zip across there in a few seconds. I stopped that several months ago and began driving over and using my manual chair to push around the place. I'm trying to keep my fitness level up and to ensure I've got the strength to push the distances I have to push. No matter how many hours I spend in the gym, nothing I do there helps me maintain 'push power.' So, I push.

I was out shopping, at a large box store, and Joe and I had picked up what we wanted. I saw that the line up was long and I said to Joe, "Why don't you go pay and I'l lap the store.' He agreed and I set off. It's a big store but like many of these stores, the outer lap is often only slightly populated with customers. I got a good rhythm going and was making the last turn to head back. There he was the wheelchair guy. I'd seen him often since that first freeze and gave him what he wanted. I didn't acknowledge him and simply went by.

He surprised me this time by saying 'Hello' as I approached him. I was shocked. I nodded hello back, and kept going. As I was about to pass him he said, "Keep it up.' I pulled to a stop, I was a bit breathless because I'd been going fairly fast and it was a long push. "Pardon me?" I asked. He said that he'd seen me working the chair and was impressed by my dedication to pushing myself when I didn't have to. He'd noticed Joe and saw in that an option for being pushed instead of pushing myself.

He was all friendly and chatty. I asked him, near the end of our short conversation, "Why now?" I'd greeted him before and got the cold shoulder. He became a little embarrassed. He said that he hated the stereotype of disabled people being fat and lazy people who could walk if they wanted to but preferred to be pushed around. He's a little thick in the middle and even though he was born with his disability, people make comments about his laziness and believe they know why he is in the chair. "When I saw you," he said, "you were in a power chair and I immediately saw you in the same way people saw me. And I didn't like it. But I've seen you most often pushing yourself, using your strength, and I realized that I was wrong."

It took a second for all that to sink in. I had trouble knowing what to say. I understand what he's saying because people do that to me all the time too. They assume that I'm fat and lazy, further they assume that because I'm fat I'm in the wheelchair and if I only lost weight I could walk again. It's "igotry" (the combination of outright ignorance with outright bigotry) people who are ignorant of what disability is and means combined with prejudice and preconceptions. This thought combined with 'he should know better' but disabled people live in the same world as everyone else and disability doesn't make you a clairvoyant saint.

So, after a pause, I said, "Nice to meet you."

"Likewise," he said.

Sunday, November 26, 2017

Inspired By The Guy At Metro Who Held Open The Wrong Door and Then Got Angry Because I Didn't Go Through It

Please, please, don't get angry
When I turn down help
I don't need.
I just want to meet my needs not yours.

Please, please, don't get weepy
When you see me out shopping
Pity tastes bitter
I 'm not Tiny Tim I'm just getting groceries

Please, please, don't offer me prayers
With your hands held out to touch me
I don't want healing
I want to do what I can in peace

Please, please, don't grab my chair to help
It's assault and could hurt me badly
A chair is not permission.
I just want my boundaries respected.

Please, please, don't stare at me and my differences
Your eyes are intrusive and slice through my day
Difference is just difference
I want to be anonymous and even invisible.

Please, please, don't find me inspiring
And tell me how moved you are
I am not inspiring.
I'm just being the way I was meant to be.

I'm asking nicely because I was raised to be polite
But I grow weary of caring
About your feelings
I really want to slap you silly sometimes.

But I don't.

Not yet.

Saturday, November 25, 2017

The Star, My Faith and The Pathway

As soon as I saw the trailer for the movie, "The Star," I knew that I wanted to see it with the kids. We set a time, on a school night, for us to pick the kids up at school and meet their mother at the movie theatre. We got them there early enough to go to the arcade and thereafter ensured two very vigorous games of air hockey. My neck got a work out just from trying to follow the puck. But soon it was time to pickup popcorn and pizza and head into see the show.

The movie started and the kids were engrossed. The animation was charming, the story was safe for a diabetic, and Mary and Joseph were presented as people in a situation. They were much more human than I expected, there wasn't a symphony playing every time Mary moved. She was young and scared. He was young and scared. And because of all that,  I was pulled right back into the story.

I am a Christian.

I believe.

Ever since I was a child, a bullied and teased child, I found respite in the idea of a loving God, and the proclamation 'Jesus loves me, this I know ...' I felt safe harbour in my heart. I felt less alone. I'm a little embarrassed to admit this but when walking home from downtown at night, alone of course, my path would take me by the church I attended. The United Church of Canada. If it was dark out, which it often was, I would stop and do the cub salute that I had learned. I'd been attending the cubs for awhile and felt that that salute had a lot of meaning and respect in it. So I would stand there, and salute the church. The church, the place that I believed that God lived. I wanted to show thanks for the everydayness of my faith and for the promise made that I was loved. It was a message that slipped through the 'fatsos' and the 'lardasses' of my everyday existence. I loved God. I loved his son Jesus. I was grateful for the sense of otherworldly loving that I had when I prayed to them.

But that little boy has grown up. He is now a gay man. He is now a disabled man. He lives in very different times. In the last months, I have heard that I am responsible for wildfires, hurricanes, earthquakes. I have heard that I am part of a community that wants to tear down society and uplift sin. I am told that the kiss Joe gives me when I leave for work is a kick at the very foundation of society. I have heard that I should be stoned to death, that there is no redemption for me, that my life is an offense to God himself.

It's like every day I hear something said, by someone pronouncing their own faith, that tears mine down. I didn't realize it but they have slowly been placing boulders and stones that bar the path back to that God that I knew, that Jesus who befriended me. I became fearful of anyone who called themselves Christians. They say that they are under attack, but they have no idea how frightening they are.

I live at the intersection of sexuality, disability and faith. I'm not sure what's on the other corner and frankly I'm afraid to look. So I also experience those Christians who believe that my disability is evidence of my sin. This is without knowing that I am also gay. They want to pray for my healing. I don't want their prayers. I am on the path that God set for me, something that almost no one understands.

I am.

Who God made.

Maybe it was a bad day for him.

But maybe not.

I watched the movie, the simple powerful story of Christmas, and I didn't realize it at the time but that story and its reminder of my faith, my very young faith. It's reminder of a boy standing saluting and showing respect for a church and a God that he loved, mattered. I left the movie and found, as I thought about it, that the boulders and stones had been pushed away. That the pure faith I had as a child was momentarily, just momentarily, available to me. And I felt so free.

But then the morrow comes.

And the news.

And the continued banging on the drum of hatred for me and mine and behind those drums I can hear the pathway being slowly rebuilt.

God is not for me.

His Son turns his face.

I hear. I understand. I fear.

But in my heart I had made room for God. And I await his next visit. Because I believe. I am His. Even if I'm told he can't be mine.

Thursday, November 23, 2017

Becoming - A Journey

More than a few decades ago, I was a very different person. I mishandled a number of personal and professional relationships. Because a deep belief in my own unworth, I saw slights in sometimes the most innocent of gestures. I mistrusted friendships because my sole thought was that I was unlikable and hurt was the inevitable outcome. As a result I became unlikable and ended up hurting others. Joe and I had some blistering fights, at my core I knew I wasn't his equal and I used my anger to try and level the playing field. How he stuck through that time I will never know.

It was not a sudden overwhelming realization that did it. It was a slow coming to awareness that the person I was wasn't the person I wanted to be. This led to further self loathing. But then, I decided that I had the power to change, that I had all the tools I needed to begin down the road towards becoming more like the person I wanted to be. I wanted to be worthy of Joe's love and affection. I wanted to be clear minded in my dealings with others - I didn't want the noise of my past, what I had done and what had been done to me, to be part of how I began and maintained relationships. I wanted to be able to think without suspicion, I wanted to be open to hearing words from others without the noise of a thousand taunts interfering, I wanted to evaluate without looking through the colour of bruise.

Yes I have been bullied and teased all my life.

Yes I have been hurt, purposely, over and over again.

Yes.

But no.

No, I didn't have to have a future scared by the acid of the past.

No, I could become a person made by my own hands not the hands of others before.

I am still not the person I want to become. But I can see him, I can feel him and I can hear his voice on occasion. That brings me, not joy, but peace.

Even very recently I had to do what I've been doing as part of this journey. I had to stop. Think. Evaluate. Look at the path I was on. Ask hard questions about why I was doing what I was doing. Pull back from the brink by blowing away emotions clouding my mind. And I had to understand the behaviour of others does not give me an excuse to react without kindness or thought of consequence.

I have been working on building my physical strength but the work of building my character muscles is exhausting.

I am 64 and still chasing the person I want to be.

I wonder if I'll ever shake his hand.

Wednesday, November 22, 2017

Not Dust

We were leaving the arcade at the movie theatre and heading to get popcorn. We realized we didn't know which hallway our theatre was located in. We saw an employee wearing the Cineplex uniform and called to him to ask and he smiled and pointed us in the right direction. We nodded thanks and went on our way.

I was pushing down towards the movie when I had a thought that something significant had happened but I didn't know what it was. I pushed it aside as I am often accused of being able to find meaning in dust and admit to that failing. We got to the movie and Joe took his pizza and my tea up to our seats while I pushed up the steep carpeted ramp. I made it without interruption, which is a major deal in my life, and I rolled over to my seat.

As the lights went down, once again, I thought that I'd missed something. But again, maybe just dust. My heart said, "but maybe not."

After the movie was over, I'm not mentioning the name of the movie because I'm working up the courage to write about it, we headed out. Going down the ramp was way easier than going up. We hit the washroom and then headed to the doors.

"Did you find your movie okay," came a voice from beside us.

I glanced up and said, "Yes, we did, thanks."

"No problem," he said and continued on his way.

He had Down Syndrome.

Not dust.

Accuse me for focusing on disability too much, but I think it matters here and it matters so much it's the point of my writing this.

I've seen this guy lots before. We go to the movies a lot. When we called to him he was at a distance and we were in a hurry and all he was to us was help to find our way. He pointed the way.

I didn't see his disability, I saw the role he had in the theatre and that trumped everything else.

Now I'm not one who says 'I don't see disability, I only see ability.' Forgive me but BARF. There's nothing wrong with seeing disability, seeing difference because there's nothing wrong with disability or difference.

What mattered he is that he had normalized disability within that theatre. He goes to work every day and he makes a political and social statement every time he does. He is worth more than a million dollar 'awareness' campaign. He is doing the work of integration and inclusion. His is making disability so normal, so everyday, that it exists as a shit kicking after thought.

"Honey, did you notice that guy who took our tickets, had Down Syndrome?"

"No, I didn't, did he?"

"Wow."

"Yeah, wow."

That realization that someone who you may have though less than you, someone like that kid at school you bullied, someone that you thought helpless, hapless and hopeless, can do major work. It's like they can slip behind your prejudice and preconceptions and smack every assumption you made in the face.

Not dust.

Not at all.

A freedom fighter.

Making freedom happen.

Saturday, November 18, 2017

What It IS

Scrolling around the research on the lived experience of having a disability to find two studies, one British and one from the US. The British study showed that 1/4 of Britons would choose to avoid conversational contact with people with disabilities and the American one showed that neurotypical people are less willing to have social contact with people with autism based on 'thin slice judgments.'

These studies talk about the bias that non-disabled people have towards disabled people.I find reading this kind of research difficult because I'm yelling at the screen as I'm doing so. "CALL IT FUCKING BIGOTRY!" Bias? You cut fabric on the bias, you cut the fabric of society with YOUR bias. It's serious, really serious. I'm glad the research is being done because it matters that we know this.

I can tell story after story about being erased from social context because of my disability and difference. Joe can attest to these experiences because he's the person who becomes doubly real as I am made doubly unreal. I recently checked into a hotel at a chain where I am an elite member - I stay with them a lot. The clerk after being reminded twice that it was my name, not Joe's, on the register and my card, not Joe's in his had to pay for the room, did look at me. He explained in painful detail, so that even I could understand where the restaurant was for breakfast.

I asked him if the hotel had an executive lounge, I'm an elite member, I get to go there for a free breakfast. He said, "You want to go there!?" with shock. He clearly didn't think I belonged there or that my presence would upset others.

Research may call that 'bias' I call it fucking, outright, bigotry.

Journals do an important job, they are restricted in important ways in their presentation of information. They are to be congratulated for publishing information that verifies the voices of disabled people who speak of personal experiences to disbelieving audiences, or maybe not disbelieving so much as purposely wishing to believe that your experiences are 'just a couple of bad apples.' So it's the job of those who read to read and believe and then react with empathy and understanding.

Bias hurts.

Prejudice hurts.

Bigotry hurts.

These aren't constructs, they are real, physically and emotionally experiences for those of us who live in the real world full of real encounters with those who'd rather we weren't here.

And by the way, supper in the executive lounge was wonderful, particularly the looks on the faces of those who were stunned at the entrance of me in my chair ... yes all those watching, the definition of who's elite just got bigger, rounders and sits on wheels.

Friday, November 17, 2017

Markers

We stopped at a mall that we know well, we needed a break and it's perfectly placed for us to do so. Our usual entrance, the most accessible one, was under construction so we found parking around the back side of the mall at the other end. We got out. We went in. I started pushing and in a few seconds became a little nauseous. I have a very physical reaction to being disoriented. I didn't recognize the mall at all. I didn't know the stores, I could see none of the familiar markers. I was not alone in this, Joe was equally lost.

We stopped for a second and gathered ourselves, we knew that we were in the same mall, but that didn't help, it made us even more confused. Why are there none of our familiar markers? We stopped and looked at a map but it didn't help. We knew where we were headed, we kept going. Finally we turned a corner and saw Johnny Rockets. We instantly knew where we were. We agreed that we'd never gone by Johnny's and didn't even know that part of the mall existed. We were both much more relaxed and the feelings of being lost in a space we didn't recognize was gone.

On our way back, it was easy. We knew where the car was parked, we knew the right turns to make, we sailed past the stores we had seen for the first time. Our knowledge of that mall and all that it offered had expanded. Even so, there was this lingering unease of having been lost, and frightened and disoriented.

I think this is the perfect way to understand how I adapted to disability. I left the hospital in a wheelchair and I went into a world, the same one that I'd left but I went in the accessible door and all was changed. It took me a long time to find the markers, to recognized that feeling lost and being lost were not the same thing. It took me a while to realize that I was going to be going into the same world through different doors for a long time. But to realize that I would find markers along the way that told me that I was where I was supposed to be.

Up til that moment of being lost in a familiar place, I had forgotten about those early days of disability and of adaption and of feeling really lost. I still get lost, but not for long, because there are more markers now, markers that tell me that I'm where I'm supposed to be.

Yesterday, after speaking to a large group of people a man came up to me, with a grave look on his face, and handed me a piece of paper, folded up. I suppose I should have waited to read it but I didn't, I opened it and there was a message for me, only a few words. I looked to him and smiled a thank you. It's a little personal to tell you what the words were, but what they said rang in my heart. 

They said, 'you are where you are supposed to be.'

Disability or not, we all need to know that, every now and then.

Different doors, but same search, belonging, membership and markers of welcome.