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.


Wednesday, November 15, 2017

outside my window

Outside my window is a place I cannot go. The accessible room in this hotel has a lovely view of a trellised walkway through a beautiful green space.The surface on the walkway, for me as a wheelchair user, looks welcoming for a push after work. But this whole idyllic space is not meant for me, or those like me. There are stairs everywhere, not a ramp to be seen, I can't and won't be able to go out and push through the park. I feel like someone looking out at a world that I can not participate  in.

Sometimes, like now, I get jealous of people like those walking, this morning, in the midst of such beauty. I get jealous of the fact that they don't even have to consider access. I get jealous of the fact that they go about their day simply knowing, not even assuming, that the world is open to them. If any of them notice that there, on the pathway there are people missing, I'd be surprised.

I wonder why this is my view.

I wonder if this is to put me in my place.

And I wish it was! I wish that architects and designers gave it that much thought. I am here looking and they are there walking and the casual cruelty of this, to me, is magnified by the fact that no one thought of what that might mean to someone like me.

Outside my window I see the world as I fear it is envisioned.

Without us.

Without a trace.

Or a memory.

Of us.

Tuesday, November 14, 2017

The cart

It was quite the tussle. I had gone through the grocery line, picking up stuff for the hotel rooms we'd be staying in this trip, and was about to head off. I was getting my chair angled just right so I could push the cart and chair by myself. This is something I've learned to do this fall with all the travel and I enjoy doing it, it's a challenge of balance and being exactly at the right angle so that the left arm is holding the cart exactly right and the right arm pushes the right tire.

The clerk was insistent, really and somewhat aggressively insistent that she would push the cart up to the customer service desk where Joe was standing in line. I held my ground and said no several times, she told me it would be quicker and I told her I didn't care. There was a line up of people at her till who were watching at first with interest and then with a 'come on let's go' look on their faces. I didn't blame them.

Finally and loudly, NO, I LIKE DOING THIS.

She flung her hands up angrily and went back to work.

I felt everyone's eyes on me as I got in position and then, pushed. I had it right. I was going, slowly, in a straight line. One of those watching was a man with an intellectual disability bagging groceries two tills over. I heard him muttering to himself as I went by, "I need to do that. NO I CAN DO IT. I need to say that.'

He looked up and saw me, he knew I had heard him, he smiled and waved

I had done it because . I could and I wanted to and that's reason enough. I'm guessing that that young guy has a new tool in his belt ... his voice ... and I hope his world changes because of it. Mine does, every day.

Monday, November 13, 2017

YOU ARE?????

How we ended up in the gym all signed up to play pickle ball is a long story in and of itself, but we've all got the 'I've paid' blue wrist bands and we were ready to go. I'd never heard of the game before, the girls shook their heads when asked if they'd ever played it before but we were there and we had the wristbands so we followed the woman who had us sit on the sidelines and wait for a court to be available.

Joe stepped out for a second and of course it was then we were invited forward. The woman started to explain the rules of the game and then noticed that we were three. She said, nicely, "How about I get the girls to play with a couple of others who can help them learn the game?" I said, rolling behind the girls, "I'm going to be playing."

"You're playing," she said.

"I am," I said as Joe walked in to make our fourth.

We all did dreadfully at the sport but we laughed. It' a game, and we laughed, that's a win. We'll do it again.

***
Joe and I are shopping for supper stuff. When done I notice that the store doesn't have an accessible aisle. I ask one of the clerk at a checkout that I can't get through, if they have one. She tells me to go through the 1 to 8 express line and then pointed that the disability symbol was there. I look down into my basket and we have a lot of groceries. Way more than 8. Way. Way. More. She sees the look on my face and she says, "Hold on, I'll double check with the manager," I don't want to take her away from her job even though there is presently no line up at her till. She says, "Please, sir, I want the break," and heads to get a manager.

We head over to the 1 to 8 line. Joe is hating this, he really doesn't like for either of us to ever be in the way. I get in the line up, Joe goes to look fora pumpkin pie, and immediately there is a problem. The people wanting to use the line up who come behind me are holding one or two things and glaring at our cart. The first two I say to just go ahead. It's awful to be using the disability designated line up which is also a line up for speedy exit. I'm sitting in a socially awkward position. The woman I'd asked comes back and says, "Yes, this is the line up for you."

One of the two people who I'd let ahead of me was a young guy who'd bought some beer. He'd been listening intently, he turned to speak to me and nearly fell over, "Still a bit drunk from last night," he laughed. Then he said that It really was unfair for me to be without an aisle to go through except one that pisses everyone off. The he looked in my cart and jokes, "At least you've got your beer," and reaches over to fist bump me. I fist bump.

I tell him I don't drink but thanks for understanding the situation. "Who's beer is that then?" he asks. I tell him that it's my husbands. There was a pause, in the whole line up," then he said, "You are married to a man?"

"I am," I said as Joe walked back to the cart pieless.

***

I realize that I get a lot of shocked, "YOU ARE?" questions as a disabled person.

They usually arise when I mention that I'm going to do something rather ordinary.

You are going to work?

You are all by yourself?

You  are going to the gym?

You are taking care of a couple of kids?

You are traveling, like on a plane?

The only answer is: I am.

Let's break this down.

YOU: in this context it means, in my ear anyway: the person I see in front of me who I have already judged as to be so different that any form of normalcy or any form of routine experiences of living that I can't imagine as being really part of the human condition in any real, concrete way.

ARE: in this context it means, in my mind anyway: existing and participating.

In combination the words are asking, "Do you actually live and participate and belong? Do you actually have a human kind of life where games are played and relationships are had? Do you suggest to me that you have a desire to be off the sidelines and in the game?"

I am.

I do.

I can.

(Big fat man in wheelchair) I am (is going to play pickle ball because it looks fun and we four can play at playing and we're going to do this because I want to and therefore I will)

It may only be pickle ball, but it's a big I AM.

Sunday, November 12, 2017

What Didn't Happen ...

Joe had parked the car and come round to my side of the car with my wheelchair which he had unloaded from the trunk. I stay warm and cozy in the car until I heard the plop of the mat beside my door. My disability disallows me wearing shoes and so during rain or snow or where the surface is rough Joe puts a mat down for me to put my feet on when I get out of the car. It just is the way we do things, and it works.

I swiveled in my seat and put my feet on the mat and then stood up. Joe hadn't realized that he'd placed the mat on black ice, the pavement just had looked damp, and my feet shot out in front of me. Joe quickly moved to place his feet in such a way that he blocked the slide. Even with that, I'm left in an impossible position. I had fallen back such that I had the merest grip on each side of the door. my arms outlined the door and my hands grabbed on wherever they could. So my feet were far from me, my bum was dangling over the driveway and my hands and arm had a fragile grip on the door.

Now I'm panicking. I'm picturing the fall. The hurt. The ambulance. The aftermath. I want none of these things.

I take a breath.

Then I pushed my shoulders back against the door from and began to use the upper body strength that I've been working on to push up. When I was moving I took the chance and released my grip on the car so that I could move my hands further up the frame. I snapped off, snapped on and pushed again. I'm taller but in a more precarious position. I've also been working on my core so I used every muscle I had that would allow me to pull my feet back. I only needed maybe three inches before I could consider lift myself upright.

I warned Joe of what I was doing so he his feet could follow as a barrier to the slide as I pulled them back. He did. Then, I was in a position where I thought now, I can combine my leg strength, the weakest of the lot, plus core and upper body and I did. I stood up and then swung and transferred into the chair.

That's why I've been working out.

That's why I've been enduring hours either at the gym or at home doing exercises.

That's why.

I owe a debt of gratitude to the men and women who work at my gym, who are knowledgeable with disability fitness. I owe a debt to the town of Newmarket who stocked the gym with a few machines that are fully accessible to me. I thank them for their willingness and their welcome both.

Saturday, November 11, 2017

Every Day

As he lay dying, my father and I talked, really talked, maybe for the first time in our lives. He and I had not been close, but in these moments, our history then lost importance in the face of our history now.What I discovered about my dad, the old and very frail man in the hospital bed, was that the time he spent in the Canadian Army serving in World War II, was still very much with him. And that it had been with him for his entire life. He told stories, some very funny stories, from the various campaigns where he had been deployed. He talked about the men that he served with. It was like the memories from this time in his life were in colour and every other memory from every other time in his life, was in black and white.

"How old were you when you enlisted, Dad?"

"Young, I was a very young man," he answered.

He talked of that young man going to basic training, being shipped over to England and then he paused and said, "You can't be prepared for what happens." He shook himself away from that thought and moved quickly to tell a story that involved water, a monastery and some small exploding device and how they combined to scare the crap out of people.He really laughed at the memory.

Over the time of our chats it became clear that he had to pull himself away from the realities of the war, in which he was a stretcher-bearer, something that make me extraordinarily proud, to funny moments, like he was trying to light candles in the vibrant colourful darkness of those memories.

My dad has made the transition from one of those who remembered to one of those now remembered. He was a Canadian Veteran.

What I've been thinking about, as I've thought about him after the funeral, was about his personal sacrifice. How much a mistake it is to 'remember the dead' and not 'remember the living who came back changed.' There is no question in my mind that the 'very young man' who enlisted was not the man who came home, he'd been changed by his sacrifice, by his willingness to serve, by the bloody trail that love for country leaves on a snowy Canadian landscape.

So today I wish to REMEMBER ALL OF THEM, those who died and those who came home different. My father carried the war with him through his whole life. I had foolishly thought that his service in the war was something he did, but I was wrong, it was something he continued to do his whole life. It was there in the words he wouldn't say and the stories he wouldn't tell.

It's easier to remember the fallen.

It's harder to see and understand the needs of those who didn't fall. But that's because of lack of willingness, loss of interest, and a refusal to recognize that heroic service given 'over there' means that there is a right to heroic service given back, 'over here.'

This Remembrance Day is the fist one that my father is qualified and considered deserving of memorializing. But we're wrong, he deserved it every day of his life from the moment he signed up until the moment he checked out.

Every day.

Friday, November 10, 2017

this gig

Yikes!

This morning we woke up to about three inches of snow on our driveway. For some reason, even though we've moved to a place where there is more snow and where we manage our own snow on our driveway, we never bought a shovel. So I sat at the edge of the door and looked at the gentle slope down to the car and I felt that I was about to launch a rickety bobsled down a steep hill.

Turns out it wasn't like that at all.

I rolled a few feet and then was mired in the snow. Pushing the tires was completely useless as they turned easily but with no effect at all. Joe had to come and push me, something that rankled me, I like to do it myself. But I needed help and was grateful to have it. I got into the car and immediately upon the chair being loaded, we had the Hamish discussion.

We began to strategize as to how best to achieve maximum mobility in my manual chair on work days. Where do we park the car? What are potential pathways? What do we do to ensure that Joe, who carries the bulk of the 'operations' responsibilities, doesn't get over loaded?

By the time we got to work, we had ideas to try and changes to make.

It takes work this disability gig, doesn't it?

Thursday, November 09, 2017

Twins

He said 'No.'

He said it softly.

He said it with determination.

He said 'No.'

Sometimes it's the smallest miracles that reap the biggest joys. It may not seem much to others but to me, it fills my world with light. Seeing someone used to simply capitulating, simply blending into the background, simply ceding his right to space and to time and to inclusion, say a word that brings him into focus.

'No' is a word that stops everything for a moment.

It's a word that brings the focus of others on you.

Perhaps in anger. Perhaps in frustration. Perhaps in shock.

It's a word that challenges authority and questions hierarchy.

It establishes self, and selfhood, and differentiates one from another. A firm No isn't the opposite of  a freely given Yes, it's it's twin.

His tiny quiet No drew a circle around him. It's the first time he drew a line in the sand and knew that he was on one side and that both his mother and his staff were on the other.

They were used to compliance.

Complete and utter control had been established.

No.

An end to compliance.

An end to control.

The staff rose from her seat ready to 'assist' him in his move from 'No' to 'Yes.'

His mother, put her hand on the young woman's arm and pulled her gently back to her seat.

The staff looked confused.

Because his mother was crying.