Saturday, March 31, 2018

The F Bomb, Repeatedly

They pulled into the parking space just as we got there. It was an accessible spot, right by the big, giant, box store that sells big, giant, things. They ran, at quite a clip, towards the store. We continued on and found the last disabled spot, 4 stalls in, down a fairly steep slope that lead upwards to the store. We ended up parking facing towards, but down 3 stalls, from the big truck ready to carry big things. They came back, trotting along behind a big cart with a set of big things in it.

They quickly began to load the stuff into the truck. This couple did nothing slowly. It was race, race, race. They are the kind of people who's pedometer would give up and just leave a message, 'you're fucking fit, why do you need me?' I'm sitting in the front seat of our car, looking at them and looking at the long, long, steep slope up to the store. I realize that they've pulled in the 'for just a few minutes' to load the stuff they bought.

Joe was getting the wheelchair out of the car, having said before getting out that he'd help me get up to the store if I needed help. Yeah, a wheelchair parking spot so far from the store is really good fucking planning. And, on top of that to have the parking lot slope steeply down so that the push up would induce a fucking nose bleed, and the ride down scare the shit out of you, that's nice too. The Marquee D' Sade and Peter Singer's love child probably were involve in creating this lot.

I decided that I would stare at them, and hope my stare carried with it meaning. They looked over at our car, as they were finishing putting the giant box into their giant, need a ladder to get into, truck. They saw me, my wheelchair and my glare. They let the cart go, because shitty thoughtless people are simply shitty thoughtless people in all areas of their mean little lives.

So, my glare.

It telegraphed how selfish they were.

It noted that there was a fucking spot beside the store for loading.

It maybe name called a little bit, just a very little bit, well when compared to the big box in the big truck.

And what did they do as I got in my chair, never breaking my gaze? They waved.

They fucking waved.

With all fingers.

And smiled a happy, 'oh look dear there's a cripple, lets show him how nice we are,' smile.

I pushed up the hill, grunting like I was shitting an actual brick. Which I should have done earlier so I could have used it to tie a note to and toss to them.

What do you think the note would have said??

Thursday, March 29, 2018

Rock On

The child was young, but not young enough to not notice. It constantly surprises people that we, as disabled people, notice their behaviour. Staring, is a particular particular example, you know when people feast their eyes off of difference and fill their bellies with 'supergust,' a word that should exist for the combination of superiority and disgust. We notice and we feel, and it shocks them.

I know this because I've become more confrontative when these things happen. "I can see you you know," startles starers and "I can hear you you know," bashes bigots into silence. Somehow they seem to feel that we are ready targets who neither hear, see, or feel their behaviour.

The little girl, I was sure was feeling the eyes on her, her chair and the way her body was shaped. I had noticed her because she was glaring at something in the distance. I focused my eyes on her glare and slid along until I saw what she was looking at. She was looking at three boys all close in age and all about 4 years older the she. They were, in full view of their parents, mocking her and staring at her.

She was little.

She was young.

But she noticed.

And didn't look away.

She didn't look away.

She glared back and angry stare. She said nothing and she said everything at the same time. It was a cold, hard look at those kids. They didn't notice her eyes at first, but when they did.

When they did.

They stopped.

Dead.

Caught.

She was young and already fighting. Already deciding that she doesn't deserve disrespect. Already taking on bullies. Already demonstrating that disability doesn't always mean helpless vulnerability. Already alive to her difference and her defenses.

Rock on kid.

Rock on.

Wednesday, March 28, 2018

Embracing

During the course of my work the last few weeks I have had the opportunity, privilege really, of teaching people with intellectual disabilities about their disability. I don't do this lightly and I never do this without a context for it because I don't know how well prepared people are to talk about their disability.

I've noted before about how people with intellectual disabilities, in my opinion, are less likely to have been told about their disability and, further, most likely been lied to about their disability. The lies are always framed as kindness. 'You are just like everyone else,' is simply an outrageous lie. The denial of difference leads to pathways of pain and self hatred.

When being becomes a secret hidden under loving lies, self esteem and pride are smothered to death. They are mourned by the actual, real, self.

So, it's a touchy thing to talk about with people who may never have heard their disability directly spoken about. While I never speak of a particular individual's disability when teaching, I speak about intellectual disability and what it means and what it doesn't mean.

In doing this recently, twice in a couple of weeks, I was really anxious as to the response. I've only done it once before and I had a positive response, but that's no predictor of how others may do.

But when both the sessions were over, I was really relieved. First because it was done. Second because of the reaction of the people with intellectual disabilities who attended. They loved it. They loved hearing about and learning about the disability they experience. They, of course, know that they are different, but most have been told that their difference doesn't matter and all know that's not true. So to hear information that they could identify with was a powerful experience.

One young woman at one of the sessions, "I feel like it's okay to just relax and not have to pretend all the time." One fellow said, "My parents are going to be upset but I'm going to tell them I'm disabled, they keep saying I'm not, and then I'm going to tell them that it's okay, I've always known."

These statements sounded an awful lot like the sentiments of those who 'come out of the closet.' And that's because it's the same thing. Coming out as different and proud is a powerful experience no matter what the difference is ... pride in self is simply electrifying.

I don't know why I was so anxious ... the journey to pride for me, in every way that I experience difference, has been one that has lead to embracing truth and discovering my okayness.

Being out, living out, claiming out, that's the path that we who are different must tread in order to embrace ourselves.

Tuesday, March 27, 2018

Awareness of Fairness

I was just finished my workout on the arm ergometer at the gym and rolled off the platform. I turned to head towards the cable machine, which had not been in use when I checked before shutting down the machine. Someone, a fellow I'd seen before, was there about to start. He glanced over and saw me and said, "Were you wanting to use this?"

I said, "Yes, but you go ahead and I'll use one of the other machines." While it was true there were other machines but one I use only for a few minutes and the other is really hard to use because of the height I have to reach. He said, "Go ahead, I'll come back later."

"No, no," I protested.

He said, "I've seen you here many times, I know you use the cable machine when you are finished on that one. You've only got a few options here and I have a lot of options. I'll just do something else."

I was really surprised that he'd noticed that while the gym is accessible enough for me as a disabled person, all the running and rowing and biking and stretching machines are not possible for me. My legs don't work well enough for them. I use the upper body machines at the gym and do low impact lower body workouts at home. So he was right. I had fewer options. He was also right that he had way more options than I did.

So I thanked him and moved over to set up the cable machine.

This kind of help, or consideration, I like. Not because I got the machine that I wanted, although I was pleased at that, but because the offer was made based on his understanding of fairness. He - many options. Me - few options.

Although his act was kind, it's not the kindness that  I appreciated most, it was the awareness of fairness and an offer to level the playing field a bit.

I left feeling like I'd done a good workout and that I'd experienced an interaction with a really good person.

Monday, March 26, 2018

Hijacking

She was really offended.

I had been rolling in to the gym, in fact I was nearly there. This means that I'd rolled from the car, up the gradual grade to the door and into the building. I was by myself because Joe had to go find parking. She had said,"You are getting your workout already." I smiled but didn't say anything. No, I'm not working out, I'm rolling my chair. Walking from one place to another may be exercise but it isn't working out. She then, encouraged by my smile started to move towards me, hands out to grab the chair.

"Please no," I said.

And she was offended with a capital UPSET.

I said, "Look, you are walking and I don't offer you help with walking, I respect your ability to do so. Well, I don't walk, I roll, please respect my ability to do that."

Then I got the look. The, "You are just a bitter cripple trying to show off how independent you are when really you are constantly crying inside" look.

I swear one day I'm going to go up to some sporty looking non disabled person and say, "Wow, you are really good at balancing yourself on those little tiny feet, do you want me to help you maintain balance? Here take the handles on my wheelchair and I'll lead you to were you are going. No really, no bother."

I want protection from other people's niceness as much and sometimes more than their meanness.

No, I don't want protection, I can do that.

I just want to live my life without people inserting themselves into the narrative of my life, people trying to hijack my experience of my life, people trying to tell the story of their life through the story of mine.

This is my life.

And, even more importantly, it's my story.

That I want to tell.

And if you're not in it, stay out of it.

Out. Of. It.

Saturday, March 24, 2018

Finally Noon

"I want people to see me not my disability."
"Don't label me disabled."
"I may use a wheelchair but that's not the most important thing about me."
I am more than my disability."

"I see you as you, I don't notice your disability."
"They people I work with are just like regular people."
"I don't see disability I see ability."
"You shouldn't think of yourself as disabled."

The last little while I've been hearing these kinds of sentiments from disabled people and from non disabled people all the time. They are always said with conviction, on the part of disabled people, and a sense of generosity by the non disabled.

But I shudder when I hear them.

Ableism and disphobia are rooted the 'more than' and 'don't see' sentiments that are so commonly spoken and so seldomly challenged.

"I am MORE THAN my disability" kind of means that you figure that disability makes you less and that other parts of you make you more. I want to be seen with a different identity. I want to be seen as a more valued role, a role that trumps my disability status.

"Don't see my disability, see me," kind of means that you are wanting to shed yourself of disability identity and that you are something different and better than the disability you experience. You are asking of another person to actively not see, or to pretend not to see, something you find shameful. It's a request for double deception and an agreement to pretense.

I understand that we wear multiple identities throughout our lives. I understand that we all want to be seen and respected for who we are. But that can never happen if we don't respect who we are, if we need social coddling and a giant social agreement that what is, isn't. Words that describe are words damned as labels.

We become the unspeakables.

We become the willing invisibles.

A long while ago I decided that I am done with pretense. I am what I am and I can speak and hear about myself as I am.

But I get shushed ...

Two days ago someone told me not to call myself disabled because I'm more than that.

Three days ago someone told me not to refer to myself as fat, even in context, because I shouldn't be mean to myself.

Shushed.

For speaking openly about who I am.

Silenced.

For being okay about my body, it's shape and the mechanisms by which it moves.

In both situations, I took exception. I will speak of myself freely. At 65 it's finally noon and my weight and my chair cast no shadow.

No.

Shadow.

Wednesday, March 21, 2018

it hurts because

A long time ago, when I first became disabled, a little boy stopped, looked at me, and asked, "Does it hurt?" I knew the question was about my disability and my use of a wheelchair and I was touched by the softness in his voice, he was young enough, still, to care for everyone's well being. I told him that no it didn't hurt and that the wheelchair could even be fun. He smiled. He was glad.

But now, years later, I'm going to tell the truth about disability, "Yes, it hurts."

I am lucky because, for me, my physical disability isn't accompanied much by pain any more. That has reduced significantly over time. So when I say that it hurts, and it really does, I mean a different deeper kind of hurt.

The kind of hurt when you find out at the last minute that the room you booked for that night isn't wheelchair accessible as you were guaranteed. The painful panic that accompanies the next 10 phone calls to be told over and over again that there's no room in any inn. And when you end up having to stay 40 kilometers away from everyone else, in a small town that has a hotel with a room.

The kind of hurt you feel when you've planned to go to an event and have been guaranteed that the place is accessible so you plan to go with a bunch of friends. Only to find out that accessible means a step and a narrow entrance and suddenly you are the problem and everyone's concerned about your feelings and you are tired of having people feel for you and want it all to stop.

The kind of hurt you feel when you find out that people simply don't ask you to join them simply because they don't want to have to worry about accessibility and it's just easier. When you find out they've talked themselves into believing that you don't really want to belong anyways.

Disability hurts.

I lied to that little boy.

I hadn't meant to.

But yesterday I bashed myself around for even being disabled. I didn't want to have to go through the frustration and the energy and the whole whack of shit that comes with needing what people don't care to give, with dealing with sham guarantees, with dealing with the sudden panic of being suddenly a problem again.

I have to keep solving the same problem over and over again.

It hurts because it shouldn't.

It hurts because it shouldn't.

It hurts because it shouldn't.

Monday, March 19, 2018

Simon

On Sunday Joe and I, along with Marissa and the girls, went to see 'Love, Simon." For those of you that don't know, this is a movie about a teenage boy who is dealing with coming out as gay. The movie has the critics strongly on its side and the gay community holding its breath waiting to see if anyone will go. As elders in the LGBTQ+ community, Joe and I went in a little unprepared for our emotional reaction to the film. That it exists. That it tells a story that we can relate to. That it's a love story. Those things, which we knew going in, well, the experience was more powerful than the anticipation. Something that is almost never true.

But I wanted to write about the fact that there were a lot of teens in the theatre. Both young men and young women. We heard them chatting, too loudly. We heard them eating, too loudly. We heard them switching seats, too loudly. They took up much more space than the seats would have predicted. But they were there and we were glad of it. Glad that they chose to come to this movie, and glad of the support that their presence would mean to the box office. If we want more of these, we need money in the registers, we know that.

Throughout the movie Joe and I just didn't look at each other. We didn't decide this going in but we both knew that it was the best approach. We didn't want the kids to see us laying on the floor crying. So we held it together and just cried and cried and cried. I can't explain to you why if you don't already know. The movie was bright and funny and moving. But wow.

The thing was, at the end, at one of the pivotal points of the movie, the teens who had been silenced by the story they were seeing, starting applauding and cheering. Out of the blue, and their cheers were authentic, they, like us, were unused to seeing what we just saw. And they cheered.

Throughout the last few minutes there was more cheering and hooting and applauding, these kids were into it. When it was over, there was a final burst of applause and then the noise started as they talked about the film and how brilliant it had been.

We loved the movie.

But we loved it even more that teens could go and see a movie about a fellow gay teen and react with love and hope rather than with jeers and revulsion.

Because that has been our journey. And "Love, Simon" is another stop along the way.

Saturday, March 17, 2018

The Powerful Act of Just Living

We arrived at the hotel yesterday after a long ride and were looking forward to getting out of the car and into our room. The lineup to check in was simple and we had our keys in moments. We'd asked for help with our luggage and the porter followed us along towards the elevators. The elevator is at the top of a mucky big ramp and I asked him to go along with Joe and I'd follow behind. He said that he would hurry back to help me up the ramp.

Um, no. I grabbed the handrails on either side and was at the top of the ramp before he had a chance to park the luggage cart. Then he suggested that I go up with Joe and he'd follow. We've had our luggage disappear on us once in a hotel years ago and we never leave it unattended. I asked him to go with Joe and I would follow. He agreed but he had this shocked look on his face.

When the next elevator came I was on it and up to our floor and pushing towards our room. When I got there the door was propped open and he was unloading the last piece of luggage. He turned and saw me and almost jumped out of his skin. "You're here," he said, shocked.

I waited for him to get the cart our of the room so I could enter and we wished him a good night. Joe told me that he was stunned at my ability to get around and to be 'out there alone.' Joe said that I don't really need a lot of help.

He made noises about learning something every day.

And you know what, I hope he did.

Thursday, March 15, 2018

The Rescue

I could feel it in my hands, even though it wasn't there. I was sitting in my wheelchair, alone and overwhelmed. I felt my inadequacies keenly. It's in moments like these that I come closest to despair. It's in moments like these that I question who I am, who I'm supposed to be, and feel that the world has been cheated by getting this Dave and not that Dave.

I was immobilized. Not by my disability. Not by the wheelchair. But by the weakness of that comes when the darkness within cast shade on any possible light. I knew I had to do something.

This is not the first time that I've experienced this.

I've had messages for most of my life about my worth as a human being.

Not good enough.

Not smart enough.

Too fat.

Too ugly.

Too stupid.

I hear the words attached to those messages. I no longer wonder if those who used them realize that I, by the nature of my construction, would have to bear their weight my whole life long. I think not of them, but of me. And what I am.

It's in moments like these that I forget that I have it. Hidden away. Far away and deep inside, I have kept it safe.

It's a photograph, not the kind taken by cameras but the kind taken when a moment in time intersects with magic and flashed by joy. I have a few of these. But there is one. It's far to personal to describe, but it's there. I look at it sparingly because the light from it hurts me. Like when a bandage closes a wound, it hurts.

I felt it in my hands, this picture.

And I looked at it.

From the photograph slowly came strength. Slowly came a new language into my mind. Language that suggested that I do have strength, that my own voice is as powerful as the ones that ripped me down, that I can go and I can do.

And that.

Of course.

Doing Damns The Darkness.

Wednesday, March 14, 2018

MINE!!

It was a demonstration of drumming and the kids, at least 70 of them, were totally into it. The instructors were having fun and were clearly well trained in both drumming and how to control a mob of kids. They taught them a rhythm for stop and another for start. The kids loved understanding the message of the drum, probably tired of voices and instructions and things that felt like school. Ruby and Sadie had a drum and a rhythmic noisemaker which they shared between the two of them.

There were enough for every kid to have something but the drums were the most popular. When they were distributed a young girl with Down Syndrome's mother helped her carry the drum to a space on the floor. Mom had just got her situated on the drum and returned to sit in a chair when two kids, also girls, who had noisemakers saw her as an easy victim. They headed towards her with the obvious purpose of pushing her off the drum and taking it from her.

When they got there they told her to get of the drum and give it to them. Mother is now alert but she didn't get up, she just watched intently. The little girl with the drum looked at the two towering over her and said, clearly, loudly and firmly. "No, it's mine."

One of the kids reached to take the drum and the girl with Down Syndrome stood up, the drum held in place with her feet. She said, "I said NO!" Several people turned now and saw the confrontation. Mother had risen about half an inch off her chair ready to dash, but she didn't move.

The standoff was only a microsecond long but it felt longer. The girls who had come over to this 'easy victim' backed down. One even said, "Sorry."

And it was over.

That little girl.

That mother.

That family.

They all understand the importance of the word 'no' and 'mine'. People with disabilities have a right to both those words. NO! MINE! All kids have a right to those words. Parents need to teach and then after teaching, trust their child to fight their own battles and only intervene when necessary.

Mom's teaching had been needed.

In the moment, she had not been needed.

I salute parents who do the job of getting kids strong enough to use the voice they have and to stand alone and strong when they need to.

When it was all over the little girl with Down Syndrome got to beat the drum she was given, the drum she didn't let be taken away.

It's not a minor victory.

Tuesday, March 13, 2018

Daddy Daddy

Joe was in a long line up. I would have been with him but the area was cramped and I didn't feel like having people towering above me. One of the shocks of becoming a wheelchair user is that my 6'1" frame is always folded down into a seated position so I went from being TALL to being not tall. Joe jokes, sometimes without much humour, that he never used to have difficulty finding me in a store but, now with my disability, he really has to search for me. So, didn't want to be there, and because I didn't have to be, I wasn't.

After only a few seconds of waiting, I indicated to Joe that I was going to go for a run. He nodded. I turned the chair and looked at the long stretch of the mall in front of me. There were few shoppers about, and I gave the wheels a shove and went on a joyride in my chair. I love it when I've got the space and the time to just fly in the chair. I'm no paralympian by any stretch of the imagination, but I'm not slow either I can create breeze.

When I reached the end my muscles knew that they had worked. My chair is old and clunky and now has a very poor roll. My push isn't aided by the chair any more but that doesn't mean that the engine isn't able to make up for it. It took a second to get my breath and then I flew back. I was going so fast that I couldn't hear the words of those I passed by. People startled by a wheelchair passing them are sometimes unkind, the world turned upside down for a moment.

Joe was nearer the front of the line when I got back, panting, at the start point. It felt good. It felt good to have a run, it felt good to just enjoy the chair and the pushing and the work it took.

People misunderstand wheelchairs.

They misunderstand life in a wheelchair.

But not kids. The one comment that I heard as I passed a father and his little boy was, "Daddy, Daddy, I want one of those." his finger pointed solidly at my chair.

Monday, March 12, 2018

Shine

We had taken our seats in the movie theatre and were enjoying the trailers. People were still pouring in and choosing seats whispering louder than a normal speaking voice. I love the movies, I love being in a room full of people there for the same experience. I was relaxed into my wheelchair and just enjoying the feel of being there.

Most people chose to come in, turn immediately to their left and go up the stairs to choose their seats. But two women entered, the one in the lead chose to cross in front of us and go up the far staircase. When she passed in front of us I recognized that she had an intellectual disability and was being accompanied by her staff. Just past us she stopped and looked up at the seats.

You can tell the quality of service that an individual gets almost instantly. The first words that come out of a staff's mouth, the tone, the texture, the content and the feel of those words will tell you everything. The staff leaned into her and said, "Where do you want to sit?" The woman considered for a moment and then pointed at seats that would have been about midway up the theatre. She lead and the staff followed.

That was it.

That was the whole interaction.

Those were the only words spoken.

But I know a lot. I noticed that the woman had a choice and she showed no fear or hesitation in making that choice. She didn't look back at her staff for affirmation that she'd made the right choice.

There is no choice where there is fear.

I noticed that the woman led the two into the theatre, she was not guided to a 'right way' of finding a seat. She didn't follow the crowd and was not expected to nor was she urged to make the same choice.

There is no choice where there is expectation of conformity.

I noticed that the woman's sense of leadership, the sense that she was at the helm of her own ship, was not once compromised. The staff was comfortable with supporting without leading. supporting without questioning, supporting without lessening. She was not diminished by the fact that she needed support. She is vulnerable to the ability of staff to know how to assist rather than insist and that vulnerability was not preyed upon.

When you support someone, you are always being watched.

Always.

Being.

Watched.

So.

Shine.


Sunday, March 11, 2018

A Little Bit of Poo

I was rolling over to one of the exercise machines at my gym when I noticed a young woman, new to the gym I think, struggling to use the cable machine. She was having difficulty figuring how to move the 'do-hickies' up and down. I don't know what they are called. She glanced around and saw me and asked if I knew how to move them. I said that I did and I told her that she had to swing them either towards her or away from her to release the grip and move it. She still couldn't do it.

I pushed myself towards her to show her when from far far away a man comes running towards her to help her. I was almost there and he was still coming. He saw me about to show how it works and he began talking, over me, to explain the was to move the thing. I turned to him and said, 'I was asked, I know how it works.' I didn't say it with anger but I did say it with firmness.' He stopped in his tracks like he'd been struck. He deflated and went back to far far away.

Within seconds I had shown her how to do it. She got it right away. She said thanks, I said, 'Thanks for presuming I might know.' She thought for a minute and said, 'I get it. I really get it.' I went back to what I was doing she went back to what she was doing and my workout simply continued.

I was, indeed, shocked that she asked me. No one ever asks me for help. All sorts of people offer me help, but until this happened yesterday, no one has ever asked for help. I think that's mostly because people seldom ask anyone for help there. Most know what they are doing and the staff are great for demonstrating how the machines work. But help is asked for, occasionally, but never from me. I was grateful to be seen as competent.

I was also shocked that the fellow ran from far far away trying to get there before me and give assistance that he wasn't asked to give. I was not surprised to be talked over, this happens a lot to me as a disabled person. But his intrusion really pissed me off, not because I wanted to show of my knowledge, not because I was a man and she was a woman and I wanted to strut what I know around, but because he invisiblized me. I was clearly there and clearly not at the same time. Again this happens to me as a disabled person a lot, as the song puts it 'so visible easy to miss.'

Non-disabled people so often, so freaking often, make themselves part of the story of my day, the story of my life, without any thought of the damage they do to the story I have to tell at the end of the day. The constancy of being overlooked, under heard, and completely removed from consideration wears down the spirit a bit.

This would have been a nice story. About the presumption of competence and how good that feels, but instead it's about him. I can't rip him out of the story because he's there like a tiny bit of poo that transferred itself from dog to sidewalk to the wheel of my chair.

A little bit of poo.

Saturday, March 10, 2018

Box Forts and Unthinkable Exclusion

I don't know who he is but some YouTube guy has taken over the imaginations of both Ruby and Sadie. We saw one of his videos and he makes box forts, that's it box forts. It's been a couple weeks now that we've been invaded with cardboard, tape and razor sharp focus.

We live in an accessible townhouse with a full basement. The basement is not accessible, it's down a flight of stairs that might be considered a good place to practice for Everest. I've never been down there of course and am happy with the idea that I will never be. But all this vacant space is great for the building of a giant box fort prison.

From the moment they started Ruby and Sadie, when they come upstairs, come up with pictures of the construction of 'basement Alcatraz' so that I can see the work progress. It's becoming kind of monster sized. I get to sit upstairs and listen to them laughing and talking excitedly as they come up with ways to make tunnels and secret passageways and 'the story.'

'The story' varies from time to time but the subject is about how Ruby and Sadie, from their separate cells will manage to escape from their prison. The have to deal with the cameras and the alarm systems and the guards. Marissa and Joe are the bad guards. I, I am informed, am their 'outside guy.' Their plan, for the day that the break occurs, after the construction is done and the action begins, is that they will face time me on the phone and I will help them with ideas for breaking out and keep an eye out for the dastardly guards.

Some will see the story that I told as an example of inclusion.

I don't.

I see it as a story that demonstrates what happens when exclusion is unthinkable.

There is a difference.

No one told the girls to include me.

No one suggested that they make sure that I'm part of it.

In their minds, from the start, I'm on the team and I'm part of the project. I think they would be offended if someone suggested that they 'did a good job of including me'. They do it because they can't imagine not doing it.

In our fight for a better world for people with disabilities and difference, we need to fight on two fronts. The world that we live in now, as it is presently socially constructed needs to be challenged to become inclusive, to intentionally make inclusion happen. It's hard work. It's good work. But we also have to be focused on raising kids, both as a responsibility of families but also of schools, such that exclusion isn't ever an acceptable option. Not through lectures, but through active demonstration, every day, that all kids matter, that all kids deserve kindness.

Ruby and Sadie have been raised around all sorts of difference, but they've also been part of the discussions we've all had about accessibility for me and the planning it takes for us all to do what we all want to do. They've only ever heard the message that we're all in.

Fight for Inclusion.

Create Aversion of Exclusion.

That's the path to the future. I'm sure of it.

Thursday, March 08, 2018

A Woman, A Rebellion and a Glass of Milk

When I was growing up, I lived in a small town in the Rockies. The house next door was rented for awhile by a couple, one of whom had a disability. She was able to walk but when she did she had a very exaggerated gait. I remember her mostly because her personality was vibrant and her engagement with me was warm. I liked her.

I remember her husband as kind of a thin, bland, man. I have virtually no memories of him at all. I do remember that the two of them had applied to adopt a child but that the adoption was denied because the adoption workers didn't like how she walked. They were convinced that she would drop a baby if she were to have one in her arms. She would not have.

They were the focus of much talk. Well, mostly he was. It was all about what a wonderful man he was for marrying her. Disabled, unable to bear children, she was not considered a catch. There was little talk about how a bland man who left no impression was lucky to find a woman who's light at least gave him a shadow.

Then they moved away. I knew my parents were still in contact with them but I no longer saw her. I missed her.

Scandal.

My parents who would have normally kept this stuff away from us, were so shocked because she had left her husband and 'shacked up' with another fellow. Wagging tongues brought on a tsunami of condemnation. How could she have done that? How could she have left a man who gave up everything for her? (What he gave up was never specified but I assume it was a non-disabled, fertile, bride.)

I never saw her again, but I heard her. I came home from school and when I came in the kitchen door, I heard her speaking to my mother in the front room. I heard my mother asking her why she would leave such a good husband, why she would throw it all away.

Her voice grew strong, "Because one day I realized that I don't have to expect less, I don't have to be satisfied with getting less, I don't have to be less just because I am a disabled woman. I don't want a man who loves me and pities me at the same time. I want more. I'm taking more."

I admit to being a bit shocked. I had never heard a woman speak like this before. I had never been challenged about what it was to be a woman, to be a disabled woman, and to simply want more than what was on offer. I've thought about her and her words often over the years. As I grew into a gay man, I realized what it was to be offered less, as I lived with a man who was so much more handsome and fit than I, I knew what it was to have others wonder why he would choose me, as I grew into a disabled fat gay man, I know what it means to simply 'taking more.'

And on International Women's Day, I thank her for the words she said to a young boy, with a glass of milk in his hands, standing in the kitchen, listening. I thank her for the seeds of rebellion that she planted in my heart. I owe her.

Wednesday, March 07, 2018

Headlines

DISABLED PEOPLE DON'T NEED OR WANT SEGREGATED EVENTS!!!

There is a lot of talk and some fiery headlines about the 'proms' for people with intellectual disabilities. I've read a number of them and they all say pretty much the same thing and make the same points. All suggest that these events should celebrate all teenagers and that people with intellectual disabilities should be dancing next to typical peers in an integrated event rather than by others with disabilities in a segregated event.

My first response to reading that particular argument is a burning sense of outrage. The suggestion is that people with disabilities are more valued when they are near or with those without disabilities than they are when they are near or with the non-disabled. I shudder at that thought. The idea that the non-disabled just walk in to a room of disabled people and suddenly those there are transported to a place of value and worth appalls me.

The other thing I notice in reading articles like these is that they never, ever, interview people with disabilities who were at the events. No, they interview other disability experts, including people with other kinds of disability, who pronounce condemnation on segregated events but don't pronounce condemnation on the lack of the voices of those who have experienced them as part of the debate.

My second response is, I do! I want and need events or social opportunities with other people with disabilities exclusively. I don't have that, I never have that, but I want that. I get really lonely as, typically, the only one in the room. I would love an opportunity to share experiences and tell stories and relax into my body without fear of attack.

Occasionally I run into another wheelchair user who is willing to chat about the disabled experience and I'm in heaven. It's so nice to be able to say things out loud knowing that you will be understood and validated rather than corrected and have your experience explained away. It takes the aloneness and isolation away.

Who is it to say what disabled people want except disabled people?

Do I like the idea of the 'proms' ... no, I don't.

Do I like events where pity is woven through the fabric of their creation ... no I don't.

But that's not what I'm writing about now. I want to express the danger in determining that all disabled people want to be constantly in the company of the valued. I fear that the teaching that - others with disabilities, less worthy - others without disabilities desired friends - leads to both self hatred and complete isolation.

Every community seeks solace in places created by and for themselves. Gay bars, women's clubs being obvious examples. Do they need to exist? Do people need to self segregate. I'm guessing, maybe, yes.

How that is done may be a question.

That it needs to be done is not.

Tuesday, March 06, 2018

Annie's Story

Today I'm giving the mike to Annie, a young woman I met when I was a classroom aide in a high school in Toronto. We became friends and then, over time, lost touch. Here's her story of memory and reconnection:

I often hear people dissing Facebook. “Good Lord no! I’m not on Facebook! It’s trash! I don’t want to know what you (or anyone) ate for breakfast!” (Confession: I think I’ve twice posted my breakfast menu on fb – my first morning in my new apartment, post divorce; and the decadence of having [and being treated to] a “real” chocolate ├ęclair on my birthday of 2017.) Yes, I am the sole culprit for trivializing Facebook! Shame on me!

But seriously and on a more positive note, I want to tell a truly amazing and incredible Facebook story. Actually, this story gave birth to the name of this particular blog.

Yes, I am an avid Facebook user. I admit it. I like its Messenger (chat) to easily and quickly contact friends. I feel connected when I see friends post special milestones. I like being reminded of someone’s birthday. (This single feature alone has saved my butt more than once.) To relax, I enjoy playing “Words With Friends” and I’ve actually made good friends while playing WWF, whom I now regularly chat with on Messenger.

So, here’s the awesome story that I promised you….

Back in November of 2017, (November 12 exactly) as I scrolled through the Summer Institute on Theology and Disability fb page (an organization that I’ve been involved with and am a great fan of) a poster’s name caught my attention. I consider the last name somewhat distinctive and many, many, years ago I had a good friend with the same name as this poster.

I smiled with the thought “Could it be….. No! It can’t be!….. But….. What are the odds?..... And even if it is, would he/they remember me?” Life had gone on for all of us. I had since legally changed my first name; gotten married; moved several times; lived in two additional provinces; and divorced. So what were the odds?

I reviewed his page enough to be pretty confident that it was indeed him, but would he remember me? And even if he did remember me, would he even want to hear from me, or would I be an unwelcome intrusion from a distant past?

I thought carefully, but this guy and his partner were two of my best friends when I was in my teens. I had several “firsts” with them: my first gay bar (I was under age – haha); my first time seeing The Rocky Horror Picture Show, Harold and Maude (which is still one of my all time favourite movies. I l-o-v-e Cat Steven’s music!) and I’ve long forgotten the name of the third movie in the triple feature – something to do with an all boys school – with much nudity; my first ride on an inaccessible subway, with a broken-down escalator; and countless other ‘firsts.”

I also very much remember New Year’s Eve 1978 (going into ’79). Dave and Joe and Joan had invited me for dinner and to stay over, since I was now living in Burlington, which Dave had taken a liking to nicknaming “Spot” because of Burlington’s population when compared to

Toronto. We spent many weekends together back then and I always slept downstairs at Joan’s apartment. As Joan was also a good friend, she gladly volunteered to help me in an attendant capacity. We all did things together, shared many conversations, had fun, laughed a lot – we were tight.

After supper that New Year’s Eve, Dave asked me to come sit with him in the living room and said that he needed to talk to me; that there was something important he had to tell me. When he sat on the couch, I moved my wheelchair close to him.

I no longer remember Dave’s exact words, but the next several minutes went something like this:

“Annie….. there’s something I have to tell you.” He seemed nervous and serious.

“ok. What?” I asked.

Dave seemed to hum and aww a bit, which seemed unlike Dave.

“You know that you are one of our closest friends, right?’

“Well yehh! And so are you guys to me.”

“Well Annie….. I hope that will always be true. I hope you’ll always consider us friends.”

“what????? Why wouldn’t I??? What…..??? What’s going on? What’s wrong?”

Dave was now literally shaking and trembling.

As my mind and heart started racing, it finally dawned on me that neither Joe, nor Joan were siting with us. They were in the kitchen. I was suddenly aware of pots and dishes clanging, things occasionally being dropped, the odd “damn!” and maybe one or two “Ohh come on will ya…..!”

I became fearful….. imagining the worst. “Ohhh, my God, Dave! You’re not sick, are you?’

Dave may have smirked slightly. “No. No…. Although some would…..”

I interrupted. “Joe?..... Joe’s sick?..... Joan?..... Ohhh my God no!...... Is it Cancer?..... What kind of
Cancer?..... Is it treatable?..... No…..no….. Wait!!! Ohhh my God!!!!! You guys are moving away!!!...... You’re moving back to BC and I’ll never see you guys again!..... Is Joan going too???”

“Annie….. Annie….. Slow down! No we’re not moving. And no one has Cancer.”

“Well what?????” I asked. “What’s wrong??? What is it?????’

Dave was now shaking and trembling sooooo badly. He was sweating and barely able to get his words out.

“Annie………. Annie………. I….. I mean, we’re….. I…. We’re…… Joe and I…..”

“WHAT??? WHAT????? FOR GOD SAKE….. YOU’RE WHAT???”

“We’re….. We’re….. WE’RE GAY!!!!!..... OK!!!!! We’re gay.”

“yeh…..so?”

“Look! Maybe you hate us now! Maybe you’ll never speak to us again! Maybe…..”

I looked right at Dave’s face. “Wait, are you not still Dave?”

“yeh.”

“The guy I knew 20 minutes ago? That same Dave?”

“Yeh.”

“Are you still my friend?”

“Yeh….. Of course!.... I hope I am anyway……?”

“Well….. What’s the problem?”

Just at the second Joe came flying around the corner from the kitchen. “I can’t stand this anymore! What did she say?..... WHAT DID SHE SAY?????”

Dave looked up at Joe and simply said. “Yeh…. So? She said, Yeh…..so?”

Whenever I recall that evening, which over four decades I have many times, I always only have one dominant thought: “No one….. but NO ONE should EVER be made to feel so much fear in revealing their true selves. I mean, what the hell is wrong with our society to make ANYONE live with that kind of fear?
So on this night, 11/12/2017 10:42pm, our conversation began again. “Is this the Dave Hingsburger who worked at West Toronto Secondary High School in the mid 1970's? If so, do you remember your friend Annie ("Gerry") Hull?”

Then a second try on 11/17/2017 9:15pm, “Now I know it's you guys! Yaaay! Wow! Do you remember me? We were good friends in the mid-70's. It's sooooooooooooooo good to "see" you and Joe again. I bet he still has that awesome laugh that grows from the very pit of his stomach and just keeps growing. I still remember that infectious laugh. I am really interested in your work on abuse. I know a little about it. After 30+ years of marriage, I had to end it when my ex became highly abusive. The only way I could end the abuse was to end my marriage, so I did. Anyway, I'd love to hear from you guys if you want to message me back.”

And on 11/24/2017 7:48am, contact: “Hi Annie, of course we remember you. Of course. I'm sorry I haven't responded before, I travel a lot and lecture and I get behind on stuff. I tried hard but I couldn't get that picture to enlarge so can't really see it. I am so sorry to hear about the abuse ... you deserved better than that. I hope you are okay, inside and out, after suffering through that. I have so many other questions for you. Let's start, where are you and what are you up to??? (You were the first person to introduce me to the idea of disability pride and as a disabled person now, I thank you for that a thousandfold).”

Disability pride? What? Why on earth is Dave thanking me? For what? I don’t understand. I talked about disability pride? I mean, it’s an awesome phrase, and it does sound like something I’d come up with. I probably heard the (then) new term “gay pride” starting to be commonly used and in thinking on my own positive beliefs about my own disability and disabilities in general (which is a whole other article by itself), I simply combined the two concepts.

After chatting online with Dave, I now kinda remember my nattering about “disability pride” but clearly Dave remembers it much more than I; and I’m soooooo glad that when he needed those two simple words for strength, he remembered them and kindly thought of me. I’m also very happy that I can now return a huge thank you to Dave.

In recent weeks (and months) I’ve needed to shift my focus to self-employment. In doing so, I’ve been given the opportunity to avail of a few very good mentors and I’ve had some discussions around the concepts of “branding” and “self-branding” – i.e. creating an identifiable brand that would become associated with me.
Speaking with all humility, I do sincerely believe that one of my best gifts is writing. I love to write and I write in a few different genres. (I love to tongue in cheek say: “Writers write, right?” Hahaha!) I’ve also pretty much always (from an extremely young age) viewed my disability in the positive. I feel I was meant to be as I am, because much good can be demonstrated from me just being the me that was I created to be. I’m soooooo comfortable with my disability that I simply think of it as just one aspect of all the parts that make up who I am and I wouldn’t be “me” without it. That’s not to say I don’t have times of frustrations and challenges. I certainly do, but all in all, I would not remove it from my life.

When thinking about an identifiable brand for myself, a natural “brand” became as clear as the cleanest glass – “Disability Pride!” and if Dave had not reminded me of that term…… Now disability pride feels purposeful, full of strength, with much good to come through it.

So first, THANK YOU DAVE!!!!! Thank you for remembering two simple words from a relatively know-nothing 16 year old who most certainly then thought she knew it all.

This piece is from disabilitypride.net Annie's site.

Monday, March 05, 2018

The Shoulder

I knew I was about to fall.

They look so small, and frail, not sturdy at all.

A couple of weeks ago, I did something stupid, and really over stretched the muscle in my right hip. It reminds me daily.

She is so young, still so little, with so much growing to do.

I haven't been really steady on my feet since then.

She giggles, tells silly jokes, and claims to have a thousand different voices - her favourite is the Queen.

My greatest fear. Absolute greatest. Is of falling. Of the hurt that would follow. And the need to get up afterwards.

She is fast, and light, quick silver has nothing on her.

Falling. Terrifies. Me.

She is also loyal and determined and brave.

And I was about to fall.

She is what my mother would call 'a wee slip of a girl.'

I had stood and turned too quickly. My balance left me.

She builds forts in our basement with her sister with walls a thousand hundred feet tall.

I didn't cry out. I didn't have time.

She loves stuffy animals and always needs just one more.

I looked around, panic struck.

She has hair that is styled by an angry Greek goddess.

All I saw was Sadie, an 8 year old girl, playing with her sister.

She loves being a girl, she loves what it means to be a girl.

"Sadie, give me your shoulder!!!"

She knows when to be serious, she knows when to help.

She ran to me and let me take her shoulder.

She knows that she has an important place in the family, she knows she is loved and needed.

I managed to right myself.

She's a little girl, a child, a puff of air. 

I felt her gather her strength and stand firm, her shoulder never moved.

She is strong when she needs to be. Very strong. Shoulders not frail at all.

Never underestimate, the weight that a girl's shoulder can bear.

She smiled up at me, seeing me steady, and ran back to play.

Never underestimate the power of a girl.

Sunday, March 04, 2018

PRINGLES WERE ON SALE

Pringles were on sale.

Perhaps I should have written that sentence with a few exclamation marks. Let me try again.

PRINGLES WERE ON SALE!!!!

Ruby and Sadie came into do some grocery shopping with us completely uninspired by the idea of, in their minds, drudging around the store while we shopped. We got a cart, one that was hard to push, and the girls took turns pushing it, enjoying the challenge of just trying to get it to turn. We came up with a couple of games, 'Spot the ...' is a great game for finding stuff in a store. Find the diced tomatoes in this huge mess of canned tomatoes.

But things lit up when we went by a bin full of PRINGLES ON SALE. And apparently PRINGLES ARE THE VERY BEST KIND OF CHIP AND WE LOVE PRINGLES SOOOO MUCH. Sometimes children speak in ALL CAPS. So the deal was 2 for 4 dollars. They both love the Cheddar Cheese Pringles more than any other flavour and they could cope with the regular ones if they couldn't find the cheese. Then it began.

They tore into that bin pushing the tubes this way and that on a treasure hunt, for real, each of them burrowing into the bin. I sat back and enjoyed them enjoying the hunt. Some people came by and looked at me and then at the kids and of those some had sad smiles and shook their heads at my lack of concerns about two girls half buried in Pringles tins. But, me, I didn't care. They weren't loud. They weren't in the way. They weren't doing any harm. And they were having fun. And a lot of it.

When they came up for air they had found the one cheddar cheese tin in the bin and the one regular tin. Victory. They would have preferred two of the cheese, but this would do. Sadie and Joe headed off to get something and Ruby and I took the cart and turned to go down another aisle. It was then that Ruby noticed that there was a shelf full of nothing but cheddar cheese Pringles. Laughingly the swap was made.

I rolled along thinking of the looks I'd gotten for being lenient about their frantic search. (Again, big deal. It's a bin of Pringles.) I remembered Ruby telling her mom about being somewhere where the adults supervising were strict and took the fun out of things. She was bemoaning what happens to adults that makes them that way. Joe and I protested. She said, "Not you guys, you're not adults, you're ... you're ... you're really old kids."

We laughed a lot at the description.

And we decided that that's a pretty good way to be thought about.

Agree?

Saturday, March 03, 2018

No Apologies

There were a few moments yesterday where I felt that it's all going to be okay. I hadn't felt that for a couple of weeks and it was a relief. One day this week I was making veggies and eggs for breakfast, something I've done a lot and suddenly, I was overwhelmed and couldn't think of what to do next. It was that point that I realized that I needed to create some space that didn't have pressures from work, either job, or the mountain of writing I have to do. I need to breathe.

Taking care of oneself isn't something that comes easily to many of us. There are other needs, more important needs, that take precedent. Then things get shoved aside, for the first time since I started going I haven't gone to the gym for two weeks, haven't done that at home exercises either. Too tired, too stressed, too much stuff I have to do in the evening.

I don't burn out, I wear down.

And that's what I need to deal with now. In two weeks I've not only not been to the gym, I haven't been out at all. Home, work, home, work, home ... two weeks.

I'm going to the gym today.

I'm going grocery shopping.

I'm going to the mall.

I'm going to the movies.

All this weekend. I'm filling it with stuff I like to do. I can't fight for community living and lose the experience of it at the same time.

So bring on the weekend.

Take away the stress.

If you are there, at a spot of being burned out, worn down, or run ragged ... take a breath. Join me. Make this weekend about you, apologetically.

Friday, March 02, 2018

Vigil

Photo description: Black boarding set up with seven pieces of white paper displayed. "Mourn for the Dead And Fight for the Living" is written in read above the sheets of paper. The sheets of paper are fully covered by name."
Yesterday afternoon we went over to Newmarket's first vigil in honour of the International Day of Mourning for People With Disabilities Killed by their Care Providers. I'd never been to one before and was intent on making it there this year. It was a beautifully simple vigil with a brief introductory talk, two reading, but the focal point was the reading of nearly 1000 names.

I have always believed that the names of disabled people are important. People with disabilities have been buried in graveyards and marked with their file number. Their names might identify who they are and who they were related to, they were buried, nestled in their coffins next to shame. Names break through and state "This is who I am." Names challenge "And this is what you've done to me."

There were so many children. Babies. I winced when I heard their names, how could this be? How does this come to pass? How deeply are we feared and hated? It gave me some kind of comfort to know that they are not forgotten, those of us who never knew them, those of us who now will never meet them, hear their names. Once a year they are spoken of.

They say that you die two deaths. The first is the death of the body. The second death happens the last day your name is ever spoken. We could not stop the first death, but by God we can delay the second. Their names were spoken all over, wherever a vigil was held. Candles may have been burning during the ceremonies, but it was their names that lit the room.