Tuesday, July 23, 2019

X-Ray Pants

This morning I had to have an x-ray, a great way to start a vacation, and, yes, everything is fine. We arrived to a long line up and a sinking feeling that we'd be there for hours. Turned out that we got through the process faster than we did at the drive-thru at Harvey's We registered, sat down and were almost immediately called in.

The technician asked if Joe could come in case I needed help she couldn't give. I agreed and we all went into the room. While I was still seated she explained what I had to do which included taking off my shirt and dropping my suspenders (or, in England, braces). I was scheduled for two, one taken with my back to the machine, one taken to the side.

The first one was easy to do because I could hold on to my pants, preventing them from falling to the floor, while in the position she wanted. The next one was going to be more difficult, I needed to have my hands up holding on to a grip she installed. This meant that I couldn't hold on to my pants and that they would definitely fall.

I asked her if Joe could hold my pants up while the picture was being taken. She 'leaded him up' which meant that he had to put on a costume that made him look part samurai and part Dirk Bader. He stood behind me, grabbed my pants and for the first time in our relationship held them up.

It was hard getting an x-ray while wanting to laugh at the absurdity of the situation. Disability can be a deeply funny way to live. 

Monday, July 22, 2019

Vacation

Today we begin a week's vacation. Our hallway is lined with suitcases. Packing is nearly done. This is all stuff that Joe does and I am the exceedingly grateful recipient of his expertise. This means that I get to sit and do nothing while he makes satisfied noises every time he remembers something he was determined that he'd forget. It's just what we do.

It is my job to make the reservations and ensure that we get what we want and need. This is made easy because the staff at the hotel remember us, know that I'm a wheelchair user and work to ensure that the whole process is smooth and that my only experience at check in is 'Welcome Back!"

They have the art of customer service down to an art. To a one the staff there seem to want to make everyone feel at home. They seem to realize that, because we need adapted rooms, our needs don't call for adapted interactions.

So when I called last night to reassure myself that all was okay, I knew that it would be. And it was. I didn't have to talk toilets to strangers. (And I bless them for that.)

After breakfast we will move into getting out of here and into there.

I am so looking forward to this!

Sunday, July 21, 2019

Love Need Not End

A very, very, very long time ago I wrote about seeing an elderly woman being supported by her son with Down Syndrome. She was a wheelchair user, something that at the time seemed new to her, and he carefully guided the chair around people and other barriers. I wondered, then, if she ever, when he was born, imagined a time where he would not only be her world but allow her access to the world.

As it happened Joe and I were back downtown pushing through the mall where we used to see them. I had forgotten them, busyness and preoccupation can push everything else aside. We rounded a corner and there they were. They were sitting at a coffee shop enjoying the holy trinity of Tims, a chat, a coffee, and a doughnut.

Something was different this time though. He was not alone. He was with a woman who also had an intellectual disability who he loved calling his wife, she in turn used the word husband at every possible opportunity. His mother watched them as they chatted with each other and with her. They had done everything. Gotten the coffee and treat, found the table and made a place for her at it.

She looked so happy.

So deeply happy.

He was loved. He was loving. She had always known he had this capacity. But now he was using it to build a life that would outlast her.

I have met parents, a few, who refuse to allow their children to grow into adults who have relationships. I have met executive directors of organizations that have policies that disallow love burying it under a log jam of policy.

What they fear, what they forbid, is what freedom does.

She looked so happy.

So deeply happy.

His world was so much bigger.

Her loss will be keenly felt, but it will not mean the end of love for him.

Saturday, July 20, 2019

Struggling

I sat down the other day to write a post, but I just couldn't bring myself to it. This is pointing to a problem I'm having with writing this blog.

Here's what happened that I was going to write about.

We were off the plane, home again in Toronto, and on to get the rental car that would take us home. To get to the rental car I need to get up a long, carpeted, ramp. What I typically do is get near the moving sidewalk and when ready, grab it. It pulls my right arm and with my left I push my right tire with my right arm. It's a bit of a dance of dexterity but I know how to do it and even enjoy doing it.

I was riding/pushing up the ramp when a woman came careening at me and grabbed the back of my chair before Joe could intervene. I lost control of what I was doing, my right arm nearly got pulled out of it's socket and I'm hurting. She kept, against our protests, insisting on pushing me and she simply wouldn't let go. It's getting a bit loud and now I'm the center of everyone's attention. In situations like this no one gets why I'm refusing help. Everyone assumes I'm an asshole.

Finally we got her to let go saying, (say it with me) "I was just trying to help." Then, before I could answer she continued, "I saw you struggling and just wanted to ease that." At that point, I gave up, I hadn't been struggling, that means she can't see me, she sees what she wants to see disability being the Rorschach test for how people see difference.

But I couldn't write this because, um, haven't I told this story a thousand times before?

Isn't everyone tired of hearing me go on about it?

You see it's the sameness of the experiences that I have as a disabled person that weigh me down, much moreso than an individual incident. I can predict this is going to happen several times a week.

Given the sameness of the experience, how do I write this in a way that's new for you. Every single day that there hasn't been a blog written, there was a blog to write - but I don't want to bore you.

So, I'm struggling.

Monday, July 15, 2019

JOB?

I would never feel comfortable doing a job interview in a coffee shop, but these are modern times. Two fellows met and clearly they had known each other in school. The applicant laid it on a little thick with the 'bonhomie' that came with past acquaintance. The interviewer kept good boundaries but was distinctly cool in his response to the warmth flowing his way. They sit. Neither has a coffee. 

The first question?

"This isn't on my list of questions for the interview today, but I want to start with it anyways. Are the words 'fag' and 'retard' and 'bitch' still in your vocabulary for interacting with people you feel better than?"

If they had had coffee that moment would have frozen in the cup.

Apologies toppled over a desperate plea for employment. The applicant looked destroyed but acknowledged it had been a fair question.

"I'm not that guy anymore," he said.

"Good, because I'm not hiring that guy, lets go through the rest of the interview."

What followed was a typical interview.

"Am I going to be considered for the position?" he asked.

"Yes," the interview said, "but I have to really think about it."

"That's fair."

"More than fair!" The words slipped out of my mouth without me being able to stop them, the two of them snapped their heads over to see me. 

I just waved and pretended to look at the paper.

Sunday, July 14, 2019

Just One

We had arrived early at the airport for a flight that would be delayed. Rah! We wanted to grab breakfast and decided to go to a restaurant rather than a fast food place and we found a spot and then found a table therein. There weren't many there, the prices where prohibitive. But there were two men a couple tables over from us and across a small aisle way, talking loudly. They seemed very used to taking up a lot of space.

It began with one of them going on about his wife who had put on weight and how disgusted with her and didn't want to touch her. We all heard him. We knew he was speaking to the room. We knew he felt he had the right to speak to the room. His friend urged him on, throwing in sexist, misogynistic, fat shaming remarks that the both found funny. No one who heard them cracked a smile.

Then they moved on to a work colleague who they had dubbed 'The Retard.' I froze. I looked at the table it was the man who had added jokes to the hateful diatribe. I was trying to figure out what to do when two more customers arrived and were waiting to be seated. I turned around to see them and one of them was an older woman in her wheelchair. Her eyes were burning holes through the fellow who had just spoken.

When the hostess came and asked them where to sit. In an empty restaurant she pointed to the table right beside the two men. The hostess tried to dissuade her telling her that there were many open seats. "I want to sit there," she pointed and then began to make her way to the table.

The two men looked very intruded upon. The restaurant was near empty and this woman in a wheelchair and her friend were seated right beside them.

The two men fell silent.

She shut them up.

She made the whole place safe.

She won.

It only takes one warrior.

Just one.

Friday, July 12, 2019

My Place

"He just doesn't ... doesn't ..." pauses to search for words, "know his place."

That's not where I thought this was going to go. It was the standard situation familiar to many of us with disabilities, someone had offered unneeded help which I had politely declined.

Cue offense.

Even though I had cheerfully said, "No, I'm good, I've got it." Even though there was no hostility or impatience in my voice, I say this acknowledging that I'm not always good at handling these things, but this time, I was.

"I was just trying to be helpful."

God, spare me from another of these conversations. I really don't want to ever have to talk about the emotions of those who assume that their help is a gift and my rejection is rude. I really don't want to have to rebuilt the egos of those who, wishing to gain from my perceived need. Please not another.

I explained to her, and the woman with her, annoyance had made them twins, that it's important for me to do what I can for myself.

My need didn't matter.

Resulting was the comment one to the other: He just doesn't know his place.

And what place would that be?

Disabled people don't exist for the general public to get warm fuzzies from our gratitude for their time and attention and assistance.

I don't exist to meet the needs of anyone but my family and myself.

My place isn't segregated into the barren wards that exist in the minds of those illiterate in the nature of disability.

My place isn't to be a man-child lifted into worthiness by the time and attention of those who cuddle at night with disphobic hierarchies.

My place is here.

This space is mine.

And, for fuck sakes, no means no.

Monday, July 08, 2019

Popcorn

So.

This happened.

We went to see "Spiderman" and, unusually for us, we were a little bit late. We can't get our tickets from the automated stations because we use the Access2 card and need a real person help us do that. I spotted a young man at the popcorn station, a place where you can buy tickets as well, and we headed towards him. He knows the system really well and is able to process us through really quickly.

As it turned out the showing that we were going to required us to choose our seats from a seat map. Joe and I both roll our eyes at this ... it's a movie. The fellow showed us seats that he'd chosen for us, like he does for all customers, and when I looked I saw that it was in the middle of the theater and up several stairs. I said to him from my wheelchair: "Um, I'm a wheelchair user. I need the accessible seating."

He burst into a blush and an embarrassed grin.

"Ooops, my bad," he said, and then set about choosing different seats.

And that was it.

That's all that happened.

There is no more to tell.

What didn't happen was more significant than what did.

He didn't get all flustered and apologetic.

He didn't make a big deal about it.

He didn't draw anyone's attention to what was happening.

He didn't make himself the hero of the story.

He didn't make himself the victim in the story.

He didn't me into a victim of my disability.

He didn't do anything other than correct a simple mistake.

Isn't is marvelous when sometimes a disability is just a disability and not a reason for spectacle.

Saturday, July 06, 2019

Morning

I get up first.

Pretty much every day.

I like mornings.

This morning I stepped by the fan that was attempting to circulate cool air into the bedrooms and headed towards my desk. I noticed then a little girl solidly asleep on the couch, covered in a light blanket, her face lit by the brightness of the morning. She looked as if she was safe and at peace as she slept.

Dancing beside me was a dog, a big one, waiting on her morning treat. She loves to get up with me and she rushes to my desk where she sits and waits for me to arrive. Her eyes flick up to the treats up on the top shelf, she wants me to know that she knows they are there, she wants me to remember the morning routine. I toss 4 into the air and she deftly catches all of them. Ritual complete she slips away to lie on my side of the bed.

I go through emails and check on a few things that I need to keep up on and then decide to go back to bed to read. I walk by a bedroom door that had been pushed opened by the dog on her rounds on her way back to bed. I see another girl, slightly older, sleeping on her back with a slight smile playing about her face. I wave, she doesn't wave back. She's dreaming of something that makes her happy, that enriches my morning.

Coming back into my bedroom to read I find the dog fully stretched out in my place. Joe is on his side of the bed still soundly asleep. I get the dog to move and pick up my book to read.

***

And people thought my life would be lonely as a gay man.

And people thought my life was over when I became disabled.

***

Life brings gifts to all of us.

Even those thought undeserving.

***

The quiet happiness of a Saturday morning.

Takes all shapes.

***

Even mine.

Friday, July 05, 2019

The Killer

Yesterday we paid $25 for just over an hour's parking.

YIKES.

Both Joe and I had an appointment with the doctor, we both go in together and even though the Doctor listens to each of us separately, it's like a real family visit. For example when the Doc had a question about my cough, he asked Joe to comment as well in terms of what he's noticed. I like the feeling of being treated as a legitimate couple who live legitimate lives together - even though we've just celebrated our 50th anniversary we find our relationship is never seen as 'real' as our heterosexual counterparts. All this to say, it's nice, but it's also not what I'm wanting to write about.

When it came to me the doctor laid out two possible courses of treatment, the risks and benefits of both AND the research behind the approaches. You can tell he's also a teacher, teaching at the local university, because he is able to lay out information in a manner that's easy to follow.

The reason he went into the detail was because he said that he felt that I was in the best position to choose which course I'd like to try. In fact, even before he said that I had decided which one made sense to me and was going to advocate for it ... but there was no advocacy necessary.

We talked about it a bit more, and we were done.

Our doctor has always made sure we were fully consenting to whatever treatment he was offering, he has always made sure we understood the approaches suggested and some of the research behind the recommendation. We've always felt in the driver's seat.

But this time was different, more overt, I'd guess.

So, we paid the parking fee and drove away. It's worth every cent.

We get our health care for free but the parking can be a killer!

Tuesday, July 02, 2019

A Destination and A Companion

It was sunny and warm and we were on a mission. We wanted to find a particular restaurant that we knew was somewhere near by. The street was crowded with people going, it seemed, every which way. We got out of the flow of pedestrians and tried to figure out which was to go. Once we had it figured, we set off.

I saw him almost right away, he was about half a block away and headed our way. He was a homeless man who had a shopping cart full to the brim with everything he owned. I paid attention to him only because with my chair and his cart we both needed to ensure that we had the room we needed to pass each other.

He did not see me until we were only a few feet apart, I know this only because I saw him see me. (Anyone who is different knows what I mean here.) His face changed into something akin to anger. And he charged me aiming his shopping cart right at me. It was only seconds before he was about to hit me, I saw the charge and waited until he was close enough that I could grab the front of the cart and veer it forcibly off to my left and away from me. It worked.

I sat there shocked.

I said to Joe, "That guy aimed right at me, he wanted to hurt me!"

He heard me and spun round and started to call me a 'fat fucker' and a 'God damned pig' and a 'lardass motherf#cker.'

I didn't like having those names shouted at me, nor did I like how they echoed between the large buildings around us, it was like the air agreeing with him. I didn't like how it drew everyone's attention, not to him but to me. I didn't like feeling what I was feeling about him.

I hated him in that moment.

I'm sorry.

But I did.

I know, or am guessing, that he has a mental illness, that he has a hard life, and I know that should matter to me in how I assess what happened and how I felt about it. I know that I should be working towards some kind of sensitivity to him and his situation. I can't imagine the life he lives. I know that.

I've waited for several weeks to write this. I thought that, over time, I would feel differently and be able to write a different kind of story.

And I know that I should.

But I don't want to contrive to be here in print who I'm not as I type this.

I have history too. I have hurts too. I don't want to compare and contrast with what his might have been, I'm just saying that I do. I have been a target for most of my life. I've heard words like that for all of my life. And they hurt me. They are words with sharp edges and their job is to cut, and to say they don't is to deny the existence and experience of both the dart and the board.

Joe put his hand on my shoulder and we turned back to our quest. At that moment I was so grateful for both a destination and a companion.

Two things that I have needed my whole life long.

Monday, July 01, 2019

Grandma's Trust

(first appeared in Canadian newspapers in 2011)

I was having a pee.

Thinking about my grandmother.

Thinking about my country.

We'd driven almost 300 kilometres through the wilderness of Northern British Columbia. That is to say, it was a long pee.

My grandmother was born in Canada in the late 1800s. In all ways she was a remarkable woman. She made the hard life of poverty and subsistence farming into a warm life of laughter, card games and home-fried doughnuts. She was a woman that I was always close to. I think I trusted her love of me more than others around me.

One summer I was staying with her in the old homestead. A barnboard shack on a gravel road. The family dreams lay like rusted dinosaurs round the property. Threshing machines that never threshed and tractors that never left a track. Big, hulks, that frightened and fascinated all the grandchildren. But inside those oddly clean sparkling windows, the light was warm. Inside the doors, the spirit was welcoming. That summer, I asked her a question. We had been studying in school the history of Canada. I had learned, with a shock, that at one time in Canada, in CANADA, women were not legally persons, that women could not vote. I had been stunned by this information.

I asked her to tell me about those days. She did. In stark detail. She said, "If you are old enough to ask the question, you are old enough to hear the answer."

She had married lucky, she said. A comment that might have seemed at odds with the surroundings of a life without riches. Water was pumped into the sink with an old hand pump, towels were stuffed around doors for insulation. But her husband, she told me, was never a violent man. He had loved her gently and respected her unceasingly. Other woman, many women, were not lucky. Their men, abetted by the society in which they lived, treated their women with less care than the cattle in their barns.

Women of her class, she said, never thought about the vote. They thought about survival. I asked her, hushed by her tone and battered by her honesty, how she coped.

She gave an odd answer: "Canada."

I asked her what she meant. She said that she always trusted that her country would get it right. That a young country would grow up. That one day a woman would be protected by law, not luck.
"Trust this country," she said, "it wills to grow and change."

It will not surprise you to know that my grandmother was the first to know of my sexuality. A woman of deep faith, she felt that the call to love me was stronger than the call to damn me. So she did. I was her gay grandson, that was that.

Once when telling her that I feared for my job, for my safety if others found out about who, and what, I was. After listening to me and consoling me, she said, "Trust Canada. Give your country time to grow. It will. It will because it wants to."

And it did.

Years later, I am driving long distances along a highway I had travelled in my youth. In those days the rest stops were barely more than "intensely rustic." I suddenly had to pee. We watched for a rest stop. Being a wheelchair-user now, rushing into the bushes is out of the question. I was terrified of what I'd find. Those rest stops in my memory were forbidding for those who walked. But we pulled into the stop and saw, proudly displayed, the blue wheelchair guy. I rolled easily to the door, and had the dignity of travelling in dry pants.

Canada.

I trust this country.

It grows.

Even when you aren't looking.

Thursday, June 27, 2019

The Big Finish (Part 5)

We arrive at the venue to get ready for me to do my presentation. There was so much noise inside of me.Noise, Noise, NOISE. My usual nerves about doing a presentation, things I've never tamed, sat on the jeering section of the grandstands in my mind right along side of the 'you failed last time, you'll fall this time' who had dressed up for the occasion and joining them was the image of a 18 wheel truck bearing down on me. My hands were still trembling.

I watched the audience come in and choose seats, I watched as they settled in place, I watched as they looked over to the presentation table with expectation. My heart had moved to my throat and I could feel it pumping wildly. I looked at the clock, I started in 20 minutes. It was a long 20 minutes and the noise inside just got louder. I know the names to call myself, the ones that really hurt.

Then, suddenly, out of no where I was being introduced. I took a breath, opened my mouth and out of it came a story I'd never told before, it came fully formed, it was shiny with truth and it propelled me on my way. About 10 minutes later I was enjoying myself. By the end of the day, I felt victorious because, not only did I get through it all, the noise in the my head, the jeering had stopped.

We got in the car and I said to Joe, I have my career back. I can still do this. If I can fight off all those demons of negativity today, I can do it any day.

I presented again the next morning, to people with intellectual disabilities, the kindest audiences I have because they all seem to be wishing you well. They participated, laughed and even surprised themselves a time or two.

I was done and all that was left was the going home.

I'm home.

We lost a car on this trip, totaled.

But we lost nothing else.

And for that I'm truly grateful.

Wednesday, June 26, 2019

Then ... BAM! (Part 4)

When we got in the car we saw that it was exactly 800k from our hotel. We hit the road and just drove, didn't stop to eat (I made sandwiches in the car) and didn't stop to pee. We just drove. Then, suddenly, we could see our hotel. We had driven 798k and our hotel was like a beacon in the night. We stopped at a stop light.

Joe screamed, "brace yourself" he had looked in the rear view mirror and saw that an 18 wheeler was bearing down on us at top speed. He took his foot off the break and pointed the wheels towards the other side of the road. Then we were hit. The wrenching, tearing sound of metal being ripped apart was accompanied by our jumping across three lanes of traffic and landing near the ditch on the other side. It was late, there was no traffic so we weren't killed by a car coming the other way.

We sat in the car.

Silent.

I won't get into the details of what happened next.

I don't want to talk, here, about my wheelchair and the problems my disability seemed to cause.

Another time.

In the distant future.

But in the hotel room, when we finally got there, we were both really shaken. I found that I couldn't settle easily into my own body. My hands, which never tremble, trembled. Joe was a mess. The stress of it all hit him.

We had no car.

No transportation.

No way to get to work.

No way to get home.

And no one wanted to help us.

Tuesday, June 25, 2019

First Stop, Second Stop ... (Part 3)

We arrived at the hotel with a day to spare. We had wanted to make sure I had a day to rest before hitting the consultations that I had lined up. I rested by shopping, having ice tea at every opportunity, and simply enjoying pushing myself around. It was great to be away from home, great to be back on the road. I wasn't too worried about the consultations because I've worked with these folks for over 25 years and know them well.

I arrived at work, early, and then we hit it hard. I found myself able to be attentive, listen well, and ask the questions that got me the information I needed. In the interviews with the people with disabilities, I never consult on someone who I've not spoken to or whose eyes I don't know the colour of, we were able to build rapport and speak with each other deeply.

At the end of the day, I felt good. I felt strong. I felt like I had more in me to give. I hadn't burned through all my fuel. The day, then, was a success. Day two there was similar.

We had the weekend off, which we used well, and then I was at another table with differing expectations. On the first day there were a few presentations and then the next on brought on the real work and, again, I enjoyed being there, listening, learning, taking notes, asking questions. It was fun.

I am on a roll.

But next comes two days of lecturing.

This is what I had worried about.

This is what I'd feared.

Part of me just wanted to go home, avoid the situation and simply retire from the expectations that come with the role of teacher, trainer, lecturer. But the car was pointed south west and we were on our way.

Monday, June 24, 2019

How It Goes (Part Two)

After coming out of the hospital, lots of decisions had to be made. In the end we cancelled trip after trip, most with multiple stops, just to give me time to heal. These were hard decisions but the were also the obvious ones, I had to get better.

Going back to work at my job at Vita was joyous. I just wanted some type of normalcy in my routine and work provided that. I settled in and got back into the swing of it. At the back of my mind, though, was the memory of that talk in Niagara Falls, the tongue, the dry mouth, the inability to finish. It weighed on me.

Was this part of my career over?

Was I done with public speaking?

Would I ever travel for work again?

What about all the remaining dates I had in my calendar?

I spoke, often, with my doctor lamenting the fact that my strength wasn't coming back quickly enough and that I was tired all the time. He simply reminded me that I had fought off a major infection and that I needed to give myself time to heal and get well. I knew, instinctively, that he was right. But it was hard to do. My calendar kept setting off alerts on the days that we were scheduled to fly, no fiddling with the phone could shut those damn things off. I was constantly reminded of the places and people I had let down. They had all been lovely, and understanding, and to a one wished me well. But still ...

Then.

It came.

We were getting ready for the road. I would consult for several days and speak on the last two of the days. Again a conversation about my tongue and what happened and would it happen again. Was I going to embarrass myself? Would I disappoint another audience?

We drove away from the house in silence. We both knew that what happened next would determine what happened next.

Sunday, June 23, 2019

The Story and How It Begins (Part One)

I've got to go way back in order to go forward. This is often true in life when we need to self-correct or when we need to see a moment in time in its true context.

For me, it started in Niagara Falls where I had been booked to do a two day training session. I went to do the training knowing I was unwell, but not knowing that I was dangerously so. During the afternoon of the first day something really weird happened. My tongue went rigid and I was talking 'around' my tongue rather than with it. Then my mouth dried up completely causing almost physical pain. I drank water and kept going. I finished the day. The next morning I knew I had to get home.

I slept overnight in my own bed and then went to the hospital. I had a huge infection on my right leg, I won't describe it to you but it was something I've never had before and it looked really weird. I got into the hospital and then in to see a doctor. From the moment of seeing the doctor and being in a ward with antibiotics being pumped into me took about 13 minutes. This was serious.

Nearly a week later I talk myself out of the hospital. No one is doing anything except changing IV bottles. Couldn't I free up the bed and just manage with the delivery of antibiotics at home. The doctor finally agreed but only, and he let me know this, because I obviously had good home support. Everyone had been impressed by Joe's regular presence and his interest in being trained to do anything that they did for me.

I was released to home care with a nurse visiting regularly to keep an eye on me. It was nice to be home but it was exhausting too. Everything was hard. Walking to the toilet seemed like a trek worthy of needing a Sherpa. But I was home and determined.

Later when seeing my own doctor I talked to him about the whole thing but primary in my mind was what had happened with my lecture. The rigid tongue and dry mouth and the fight to speak at all.

My doctor is cool, he doesn't know everything. He asked me if it had happened again since the first time and, no, it hadn't. "It was probably part of the infection, you were really sick."

I knew he was probably right.

Probably.

Monday, June 17, 2019

Straight Beer

We meticulously planned a hotel to stay at that was within walking distance from an accessible, yes can you believe it, gay bar. We seldom get to be in gay spaces any more, most of them are inaccessible in one way or another, so we were excited.

It really did take work getting there, the distance wasn't great but there was a fairly steep hill that we hadn't anticipated. But the drive to be amongst our own was strong and drew us up the hill We made it to the bar and took great pleasure in just going in. The pride flag fluttered above us as we entered and we took it as a sign of welcome.

There was a long bar, almost full of men, our age, sitting on stools chatting with each other, a few were holding hands. There was an aisle that separated the men at the bar and tables along the outside wall. It wasn't a big place. We sat and were greeted by a waiter who seemed to genuinely want to welcome us. We ordered a drink.

Shortly thereafter a group of 6 straight people entered and took a table. Don't ask me how we knew they were straight, they made the fact that they were straight in a gay space perfectly clear as they marveled at their own tolerance. Two of the couples at the bar, who had been sitting closely moved apart from each other. They too, like us, remember the dark times of the not long ago past when being gay was met with violence and being in love could lead to murder. The noise that rose from that table was disproportionate to their numbers. They felt they could take up space in every way they wanted, so they did.

They were only there long enough to down a beer and congratulate themselves.

Suddenly, they were gone.

It took some time but everyone relaxed again. I need to be clear that gay people are not fragile but we have been marginalized and know how to be alert to the subtle changes in moods of gangs who feel free to objectify us into things to be tolerated.

They have so many spaces.

So many.

Is it so much to ask that they be respectful when they enter ours?

From the behaviour of those that intruded, I'm guessing it is.

TELL ME AGAIN ABOUT THE NEED FOR A STRAIGHT PRIDE DAY, LIKE THERE ISN'T ONE EVERY FUCKING DAY OF THE YEAR IN EVERY FUCKING PUBLIC SPACE.

Sunday, June 16, 2019

Straight Strawberry Shortcake

Joe and I sat across from one another on a rare night out for supper. We travel a lot and most people assume we eat out a lot but we don't. We typically have a microwave in the room and make our meals en suite. This gives us just a little more control over our diet and, being vegetarian, allows us to escape the ever present and slightly malevolent pasta prima vera. Friday, though, was special. We were back on the road after my long illness and it felt good to feel strong after several days work. Dinner out was on order.

We were taken in and seated. As the restaurant filled, it filled with couples and with families and with the occasional lone diner. I saw a young couple, maybe in their very late teens, out having dinner. She said something, he laughed and then he leaned over a gave her a quick kiss on the lips. People who noticed, like me, smiled approvingly. They didn't and needn't have noticed.  Beside them were a couple with three kids. Throughout much of the time waiting for the meal, mom and dad held hands, the kids seemed pleased that they had parents who were still in touch, in the exact sense of the word, with each other. Finally, at the furthest table sat an elderly couple. He had his arm around the back of her chair and she touched his face often, gently, as they spoke. It was a warm atmosphere.

Or so I thought.

No one had really noticed Joe and I except for when we were seated and an unnecessary fuss was made about chairs and pathways. Throughout the meal we chatted about all the things that married couples talk about. Again, no one noted two men chatting in a restaurant. We'd finished our meals and then decided that we'd split a strawberry shortcake. We ordered one dessert and two forks. The waitress paused for a second when we ordered, doubled checked by saying, "Two forks?" And we, not thinking about it at all, just said that she had heard us right.

The strawberry shortcake came, it looked like art, for about 15 seconds. Then we both attacked it. We continued to chat and eat and we were about half way in when we realized that we'd been seen. This is, we came to understand, not something that straight men do. The sight of us sharing the dessert, eating from the same plate, both leaned in towards each other as we shared, had thrown a spotlight on us, our table and our behaviour.

We we no longer completely safe. The young man who had kissed his girlfriend, glared over at us and I heard him use the word "fags" to describe us. Others too, were disapproving. We looked at each other in silent signal, and we continued to eat the cake until it was gone. The bill arrived before we asked for it and we took the hint.

We left the restaurant not knowing how the walk back to the hotel would be. Would it be safe? Would we be in danger? We moved quickly and quietly and took a breath when we got back to the lobby.

YEAH, NOW TELL ME ABOUT YOUR STRAIGHT PRIDE MARCH FUCKERS.

Friday, June 14, 2019

Bolted

She struggled to push an immovable chair out of my way.

Let me say that again.

She struggled to push a chair, that couldn't be pushed, out of my way.

That's one thing. The other was, it wasn't in my way. The only thing in my way was her as she leaned down to try to get a chair that wouldn't move to move. I watched for a second. I could feel, without seeing, Joe's eyes roll as he waited behind med.

STOP. I said and she stood up panting from her effort. DON'T DO THAT. I continued. I explained to her that, and forgive me here I spoke as if for all disabled people and I promise I don't do that often. But I wanted the weight of my community behind me on this. "It's not in my way, disabled people hate when people leap into help when help isn't needed. I didn't ask for help, I don't need help, wait til you are asked. You've made a spectacle of yourself and me, everyone's watching. You know disabled people get together and talk about you non disabled sort and we HATE THAT. SO DON'T DO IT."

"I was ...."

"Don't even finish that sentence. Just listen. Don't go to ridiculous lengths to try to HELP when it's not needed. THE CHAIR IS BOLTED TO THE FLOOR. The only thing I can't get by is you, so can we please get by, we just want to get to the bar.

She stepped aside.



Thursday, June 13, 2019

What They Call Me in Canada

We entered Target, and immediately Joe said, "I've got to go pee." We're old men and this is a constant theme throughout our day. I didn't have to go so I wandered around the entrance to the store. Two fellows came in, maybe in their 50's, saw me there, smiled, and said, "Waiting on the wife?"

Now I had a choice.

I could just let it go, I could say that I was waiting for a friend, or I could be truthful. They seemed friendly, but gay people know how quickly friendly can change into hostility. I decided to just be truthful, "No, I'm waiting on my husband."

I had called wrong.

They immediately flared up and I knew I was in a dangerous situation. "Where you from?" I was asked and I said that I was from Canada, that gave them fuel. "You are a country full of faggots up there from your faggoty president right down to you."

"You are right," I said, surprised that I felt less fear than I used to and more courage than I thought I had, "we are a country full of people like me, and you know what they call us, 'citizens' man, 'citizens.'"

A short glaring match.

Joe comes out to their retreating backs. "Do I want to know?" he asked. "No," I said, "you don't."

Wednesday, June 12, 2019

The Words Almost Said

The words formed in my head as I was pushing down a long hallway covered with thick plush carpet. Joe popped out of our hotel room and called out STOP IT'S NOT ACCESSIBLE. My heart sank, I yanked my chair around and headed back to the elevator and to the fight.

At the desk I spoke to a woman about the issue, she tried to find me something in the hotel but there wasn't anything available. I asked to see the manager and she disappears for several minutes. During that time I'm listening to the other clerk call hotels in the area trying to find a room and with each call he is told that the hotel is fully booked. He is unable to find a non disabled women a room, what's my luck going to be with a disabled room? I am now feeling physically sick. I can barely breathe. What are we going to do?

I had called twice on the way to the hotel to ensure that I had the room I booked. I had done everything in my power to make this problem free. My clerk is back and is telling me that I have no room. I ask, again, to see the manager, she goes to get him. I explain to him what happened. He goes to see the room we've checked into and we discover that the first clerk, from the check in, had checked us into an accessible room but had written the wrong number on the key folder and had set the keys up for the wrong room.

He sends the clerk up to check the room we are going to, Joe goes along, I speak to him a moment or two more and in that time I realize he doesn't care about what happened and what the experience did to me. Not once did he apologize for the error, not once did he ask how I was. He made the mistake that the non disabled do in situations like these, he thought that this story began with my check in to the hotel and ended with my having an accessible room. But our personal narratives as disabled and marginalized people runs much longer. This is just another in the endless stories about booking accessible rooms and not getting accessible rooms ... it doesn't matter that this ended well. It doesn't matter because for at least fifteen minutes my guts were tied tight, my breathing was ragged, my heart was pounding in my chest, and my tears just barely held in.

But he was polite.

He cleared up the error.

That's true.

But he didn't care two wits about me as either a customer or as a person.

No apology.

No concern.

Those two things can only tell me that, at this hotel, with this kind of management, there will be no change. Disabled people don't matter here.

You may be wondering what words had been formed in my head ... I was thinking and was going to say to Joe that it was nice to be on the road again. My lengthy illness and recovery has come to the point where I can travel again. I had had a lovely day with Joe, albeit mostly driving, and I had longed during my illness to be able to be healthy and strong enough to do this again.

I'm on the road again.

Where the wheelchair will serve me well, and others, unfortunately, won't.

Tuesday, May 14, 2019

Surrounded

And suddenly a door opened and I was surrounded by children. Small children. Young enough to be curious. Young enough to have flexible minds. Young enough to see I was different. Young enough to connect with my eyes and see similarity.

The questions flew out of them. They had to fly by the discomfort of adults who worried about me, as if they thought the questions would somehow lead me to guess that I was different and be hurt by that. But the words flew quickly by objections.

"Why are you sitting on wheels?"

"Because I can't walk very well."

That answer simply satisfied.

"Is it hard to get around?"

"Sometimes, but it's really fun going downhill."

That made them smile as they imagined the scene.

"Does it hurt?" came a quiet question from the smallest child.

"It doesn't hurt to be in a wheelchair but sometimes it hurts when people stare."

She nodded. The reality of bullying starts very early.

Then, they flew away. Some waving, some calling 'bye'. Some just taking off home.

It was so nice to have a conversation about my disability and my wheelchair with people, many forget that children are 'people', who haven't already decided what the answer is, or should be.

Open minds.

Open hearts.

That's always the best way to enter into conversation, isn't it?

Friday, May 10, 2019

Words / Power / Healing

For about 12 years now, I've had a tiny little hole in my mind that led to a puncture in my heart and a crack in my soul. It's a wound that sometimes hurt. But only sometimes. There were days it was almost unbearable and days I didn't think about it at all. I had become resigned to the emptiness of those spaces in the trinity of my essence. Resigned. I didn't talk about it with anyone, except Joe, I didn't want people to know about the missing spaces of me, because then they'd know the cause, the blow that put that tiny hole in my mind.

Then, today, something happened.

Someone spoke to me. Someone I liked but didn't know well. And they said eleven words to me in context of talking about something I'd done. Just eleven words. I never thought I'd hear them. Those words traveled to that tiny hole in my mind and made their way to the puncture in my heart and the crack in my soul. In seconds the emptiness was gone.

Words are powerful things.

They are also shaped to fit into our lives and our consciousness in deeply intimate ways.

I imagine there are millions of people, like me, who had given up on waiting to hear the words they need to hear. To experience those words entering into their very selves and healing wounds left by callous or indifferent hands.

I'm a little bit changed.

Part of me, the part that would have me on edge for no particular reason, seems to have mellowed. I feel it already.

I'm completely changed.

My mind, my heart, my soul, feel differently, like they fit me a little bit better.

Those words.

Eleven of them.

Were magic.

I hope that any reading this who get what I'm saying, I'm sure it sounds like nonsense to some, I hope that you too will one day soon hear the words you need to hear.

And experience.

Healing

Thursday, May 09, 2019

No Toast

There's lots of ways ...

Today I was getting ready to start work when Joe brought me breakfast. Now, before I go, on, please understand that I really appreciate him doing this and what I'm about to say doesn't take away from that. Anyway he brought me my breakfast and when I looked down there were the two eggs, some veggies sausages but no toast. I eat eggs on toast every morning of my life. I said, "There's no toast!" Joe immediately apologized and I interrupted him to say, "Is this your way of calling me fat?"

I said this as a joke.

I still mean it as a joke.

Joe is a wonderful man, he is neither a bully or a name-caller.

BUT ...

It got me thinking about ...

... the time that I heard a staff, impatient, snap at a young boy with Down Syndrome, who was attempting, unsuccessfully, to put on his shoes. This is a skill he has but it's always done slowly and if there are any distractions, he needs to start again. The staff said, shortly, "Let me just do it," and took the shoe from the boy's hands and shoved them on his feet.

... isn't that just another way of calling someone the 'r-word?'

... and the time I was in a store, shopping, and two young black teenagers came into the place. They were immediately followed by the security officers, who had ignored me and, unsurprisingly all the other white shoppers. The girls knew that they had been followed and were under scrutiny that was zeroed in on just them.

... isn't that just another way of calling someone the 'n-word?'

... and finally the time when I was at a meeting and the chair of the meeting called on men who raised their hands more than twice as many times as he called a on women who had similarly indicated a desire to speak. They pretended not to mind and the chair pretended that he treated people equally.

... isn't that just another way of calling someone the 'b-word?'

Maybe name calling isn't limited to speech, maybe the most serious way we denigrate someone is with the words we speak through our behaviour. It is said that behaviour is communication and if it is, some of us need to shut up.

Or, even better, learn a new vocabulary.

Wednesday, May 08, 2019

Not So Much

I saw them at the mall.

So did everyone else.

He was tall and strong. His tight tee shirt emphasized his lean, strong, torso. He obviously took care of himself, he obviously thought that mattered. He obviously wanted others to notice. His tight tee, stretched across his muscular chest and his arms bulging against the restraint of his shirt, told us that.

Beside him and a little behind.

Walked a man with a disability.

Physical and intellectual disabilities in fact. He walked in such a way that his knees constantly got in each other's way. But with will and determination he was fighting to keep up with his staff. Unlike his staff he did not wear a tight tee shirt, he wore, instead, a bulky coat and jeans. He was sweating with the effort of keeping up with a staff who walked just a little bit too fast.

He was on his phone.

The whole time I saw them.

Never looking up.

Never looking back.

Not once did he speak to the man with him - the man behind him.

The man walking behind him.

The man struggling to keep up.

At one point he laughs at something he sees on his phone.

He is connected. He is wired in to his friends. He has a life beyond where he is now, a life different from what he's doing now. It's clear that his world is much bigger than this place. It's clear that those relationships are much more important than the man, walking a little too fast, sweating with the effort, who walked behind him.

He looked so alone.

Walking quickly behind a man in a tight tee.

He looked so lost.

Following steps taken too quickly.

Everyone watching had a choice in what they thought about what they saw. Did they see a staff who didn't care. Or did they see a man not worth caring about? That this is a legitimate question frightens me, but I know it is.

He cares about himself, he shows that. His body is toned and there's a gym somewhere who's equipment is being worn out by this man. I guess he think that's important.

His body is strong.

His heart, not so much.

Not so much at all.

Tuesday, May 07, 2019

Maybe

I sat waiting, for a long time, outside the accessible toilet. The green light had indicated that it was in use and I had tested the door to see if it was locked. It was. Time passes slowly when you are desperate to pee. When the door opens, a couple stumbles out. They do not have an obvious disability and this makes them both talk quickly, telling the same story. She had been in a car accident recently and now has seizures. He supports her when they happen, he loves her, he'll do anything for her. They both tell me this in a weirdly parallel but wildly different dialogue. They needed the space for her to get changed and to get fully back into herself. They were really sorry it took so long, they knew that I'd been waiting.

Here's the thing. I didn't care about waiting. I don't like it, but I am, and this may surprise you, aware that I'm not the only person with needs in this world. They were finally through the door and the fellow leans over to hold the door open. He's reaching as far as he can, the door is heavy, it's a struggle for him to do this. And he doesn't need to. I'm right beside the door opener button. I tell him it's okay as I reach for the button.

"No," he said, "I want to help you. Nobody ever helps us. No one wants to put the work in to understand us. When we came out and saw you I thought you'd be angry and you weren't you understand what we are going through. That's help. That's big help. I want to help you back."

Mostly when people hold doors that door openers open, it annoys me a little bit but this time I just said 'thanks, I appreciate it.'

He smiled at me, She smiled at me. It was like we were all having a moment outside a bathroom door.

I had never thought that 'not being mad' was an act of understanding.

But maybe it is.

Maybe it is.

Saturday, May 04, 2019

Back

I'm back.

When I fell ill we had several trips booked, airplane tickets bought, hotel rooms sorted. We have never been so organized. It felt good, until Joe, while I lay in a hospital bed, had to cancel everything. It was brutal. So I've not been working at anything but my regular full time job for several months now. It's been good to get a rest but difficult to feel good about.

But.

I kept my most recent gig. It was to work with self advocates as they came together to form a self advocacy group. I love this kind of work. I really wanted to be able to do it.

We arrived early and got set up. Joe and I went over our roles and then we waited for the participants to arrive. And when they did, I turned to Joe and said, "This is going to be fun!"

And it was.

The group had energy, it had ideas - and really big ones, they were not afraid to take a stance or to direct me. After one of the items that was brought up, I thought to myself, "This is really deep shit!" I wanted to say that to them, to acknowledge the depth of thought involved in their discussion.

So I said, "Does anyone here mind if I swear?" Now I personally think that 'shit' is one of the stinkiest things but also one of the blandest swear words. But I asked. Three or four people in the group looked at me and without hesitation said, "No, don't swear."

And I didn't.

Because that's what self advocacy is, speaking up and letting people know what boundaries they don't want crossed, what language they don't want used ...

I think this group has a really good chance of doing really big things.

Gratitude isn't a big enough word for me to express my happiness at being able to be there, to be part of this, and to make it through the day feeling good and strong.

I'm back.

Thursday, May 02, 2019

Good Thing or Bad Thing

I had just gotten myself positioned at the cable machine to do punches, straight ahead, upwards, downwards. I'd increased the weights and had tried a couple of punches to see how I'd do, it was doable but work. I'd been so focused that I didn't notice him standing there, waiting for me to notice him. I stopped, looked up at him and said hello.

He mentioned that it was nice to see me back and wondered where I'd been over the last many weeks. I told him that I'd been very sick and in the hospital and was only now trying to get back to the routine, I had, I emphasized, been to the gym a couple of times since but had not seen him there.

He asked about my illness and recovery and we spoke for a few minutes. I told him that the worst thing about the gym was, when you came back, you could tell exactly how much strength you'd lost. I'd had to drop weights and resistance on everything I was doing. It would take a while to get it all back.

"You are an inspiration," he said.

I blubbered something about not feeling like one.

"Well, you are," he said and then was on his way.

I tried to figure out why I wasn't offended. Like all of you I don't like inspiration porn, or being objectified into a one dimensional disabled wonder. Then I realized that he wasn't using the word in relationship to my disability but in regards to my will to fight back after an illness. I don't know what his history is, or where he comes from, or who he's known, I don't know what the word 'inspiration' means in his own personal vocabulary.

I am inspired by people sometimes but have become shy of saying the word. But inspiration isn't a bad thing, inspiring people do actually exist.

It's weird because it took me 20 minutes to figure out that I wasn't offended and another 10 to figure out that it was a compliment.

Being disabled means that sometimes I complicate the uncomplicated and over think something that doesn't require any thought at all.

Any of you find yourselves spending too much time figuring out what's the right was to feel about things?

Tuesday, April 30, 2019

A Good Sleep

"So, I heard you'd been really sick," she said, standing at my door.

My door at work is almost always open. I like to be accessible, I like people to feel they can pop in and say 'hi' or come in for a chat when I'm able to. I also like the feel of this place. We offer therapy here to people with disabilities who have experienced violence, abuse, trauma or the inestimable pain of having been institutionalized. The people who come are so incredibly brave. They come to heal, they come to reestablish a relationship with joy, they come to make their lives better. They also come knowing that the work will be hard, that they will need to dig deep to find the emotional resources they need, they know that to make the next part of their journey easier they may have to walk again through pain.

I'm in awe of them.

Just a few feet from my office door we have a small waiting room. Sometimes people with disabilities gather there and simply talk with one another. They support one another, laugh with one another, and, in an odd way, manifest their healing in their interactions.

I'm in awe of them.

"Yes, I've been very sick," I said.

"You look, you look, you look, good now," she said and then turned and left. I was grateful that she'd seen health in me, when you've been sick this is good to hear.

But she returned.

"I didn't say it right," she said, "My mom said to me after I was in therapy for awhile that it looked, for the first time in a long time, like I'd had a good sleep. And I had, for the first time in a long time."

She paused, blinked away tears.

"That's what it looks like for you, it look like you've had a good sleep. You were sick, but it looks like you rested. That looks good."

I looked in the mirror later and she was right, it looked like I'd had a good sleep. It took illness to knock me into bed, but once there, I rested.

I want, for the rest of my life, to always look like I've had a good sleep.

I wish for everyone that comes through the door to therapy that they will always be able to have a good sleep, a rest.

Sunday, April 28, 2019

Lucky to be Free?

Yep.

Had all sorts of plans for today.

Got up and didn't want to do them.

Wanted to watch T.V.

Wanted to surf the web.

Wanted to make a spaghetti sauce.

Wanted to spend time with tea and a book.

Wanted to spend the day in my housecoat.

Planned to go to the gym.

Planned to go to the mall.

Planned to pick up a book waiting for me at the store.

Planned to be active in my community.

Didn't want to do it.

So I didn't.

And it's awful to realize.

That I can make this decision.

Solely because I don't have a staff.

I don't have a plan.

I don't have an outing checklist.

Sometimes living freely in the community.

Is shown best by simply staying at home.

And saying 'to hell with plans.'

It shouldn't be luck that I'm free.

But it is.

And that fact scares me.

Saturday, April 27, 2019

The Reason Why

He was sitting, at a table in a busy food court, looking very, very, alone. He kept an eye on his mom who was in the line up to pick up some lunch for them. Across from him were a table where sat two elderly couples. They had noticed that he had Down Syndrome. They were staring at him. Pointing at him Talking about him. They knew he could hear them. They didn't care.

I have marinated in the bullshit behaviour of others for my whole life. A fat kid, a fat adult, a fat elderly wheelchair user. I have been looked at, judged, examined and vilified my whole life. People made the assumption that they could speak to me about me, speak to others about me, freely, my body has always been, in their minds, permission.

It never has been.

As an adult now I confront those who stare, and I have a look that silences those whose lives are so empty that they need to talk about the body of a stranger. I can handle myself. I can leave without the heat of the judgement leaving burns on my skin. But it wasn't always so. When I was young, it hurt so much, words fail me.

And as an adult, I can use what I know. I can take action. I grabbed the wheels of my chair and pushed over. I came to a stop right between the table of the two couples and that of the boy alone. I parked there. They would have needed to stand to continue to feast their eyes on his difference.

They had me. They had bigger difference to see.

But I sat and stared at them.

I said nothing.

I stared at them and slowly shook my head.

In moments, their trays were picked up and they were gone. And he was safe. I rolled away.

His mother was returning to him with lunch and he was reaching up to her. She set the lunch down and hugged him. She maybe wondered why he needed it so badly right then. But she was a good mom, it only mattered that he needed her love, the reason why could wait.

Friday, April 26, 2019

Nice Unaware Untrained Unthinking Love

I am, when advocating for things like the right to pee, almost always told that prejudice, specifically ableism and disphobia, do not exist. I'm not sure if it's because they think that non disabled people are too nice to be prejudice or if we are simply not worthy of the bother of prejudice. But, whatever it is, I'm constantly told that:

1) We just didn't think about accessibility when we made the change.

                      - well then ... think

2) Sometimes when you aren't disabled you don't notice what access needs are.

                      - well then ... notice

3) We just need more training so that we can become more aware.

                       - being 'aware' isn't the same as been 'awoke'

4) We LOVE our disabled customers.

                        - get me a barf bag, I don't want your love, I want equal access

So non disabled people don't have a prejudiced bone in their body when it comes to us. Not one. My lived experience at the blunt end of interactions with the world around me and the people who inhabit it, notwithstanding, tell me otherwise.

But the only people who I have found that can hear a conversation that has the words ableism and disphobia in it are others who are within the movement.

"Forgive them for they know not what they do."

OK.

But what if they do?

What if they do.

Thursday, April 25, 2019

Fight

An accessible toilet has been made inaccessible.

The door used to swing both ways, which is more important than you can imagine when you need access to the loo. I used this toilet all the time, I'd swing the door out, then back in beside the toilet, then swing the door closed. Easy peasy. Then, I went and found that the door had been made inaccessible because they put a governor on it so that it could not longer swing outwards, only inwards. This effectively makes an accessible toilet inaccessible to wheelchair users.

I discovered this when I had to pee. I arrived, fully confident of a toilet that I could access, to find that I could not use it. The nearest toilet was down an elevator, for which there is always a wait and then a long push down a long corridor. I navigated all this and then had to wait outside the other accessible toilet for it to become free. Thank heavens I have a bladder that can hold more than a super soaker.

I mentioned this to someone.

They asked what I was going to do.

I said that I've already got a call in to the property manager.

"You look like you are ready to pick a fight."

I thought about that. I've been accused of that before. I need to say that in the conversation I'm recounting, it wasn't an accusation but a friendly joke. But even so, hearing that reminded me of the other times it's been said to me, often in a less friendly manner. Like I'm rolling around looking for offense. (Don't have to look far, ever.)

But I thought about it.

No.

They picked a fight with me.

They made an accessible space inaccessible.

They threw down the gauntlet.

They initiated.

To respond is not to pick a fight but to engage in a fight where the first punch has already been thrown.

We need to see provocation for what it is. We need to see that our response is often second to the action of another to deny access, to make unwelcome, to exclude.

So bring it on. They picked the fight. Now they have to deal with who they picked it with.

Sunday, April 21, 2019

Easter

Easter.

For awhile there, especially after first admitted to the hospital, I wondered if I'd be here right now. I wondered, further, if I wanted to be here. I was tired. I was sick. I thought maybe I was done.

Then.

Every time Joe came into the room.

I knew I wasn't finished.

Every time Marissa and the girls came to visit.

I knew I wasn't finished.

Every time my mind wandered to the work I've yet to do.

I knew I wasn't finished.

But.

It's easy to give up.

Easy.

Or so I thought.

But I discovered that I am firmly tethered to the ground.

Firmly attached to the life I'm living.

Firmly connected through the past to the present and future.

Yesterday I had a normal day. I went to the gym. I went to the movies. I came home and helped prepare dinner. Just an ordinary day.

A week ago I would not have had the energy to do that.

But I had a normal day.

And I'm grateful.

So today, Joe and I are heading down to the city to go to church. Our church. We are both feeling thankful. We are both feeling hopeful.

We are both feeling Easter.

And for those of you who celebrate this feast, I wish that same feeling for you and your families however they are constructed.

Saturday, April 20, 2019

Signs

I've said it myself, many times. So please don't take offense when I enter this into discussion. I used to imagine, when I first became a wheelchair user, what kind of message I needed on the back of my chair so as not to be grabbed or forced to receive assistance. The ideas funny, the execution, never happened. I don't want a sign on the back of my chair. I'm a private citizen, not a billboard. And I notice when I bring up the topic of being assaulted, being grabbed, being manipulated, people come up with ideas for signs for the back of my chair. I get it I do.

Or I did get it.

I don't now.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

When that man came at me from behind. He startled me. He forced his help on me. HE GRABBED ME! In full view of lots and lots of people. I assure you that if I saw someone coming up behind another person with the intent to grab, I'd call out. I'd yell "STOP!" I think others would too.

But no one did.

In fact they smiled at him.

Saw him as generous.

Saw my angry outburst as 'the problem.'

And when we come to discuss it, out comes our sense of humour, our comes our suggestions for what I should do differently to stop this.

I SHOULDN'T HAVE TO DO ANYTHING DIFFERENTLY TO BE LEFT ALONE FREE OF ASSAULT!!

It's not because what my wheelchair is or is not wearing!!

But ...

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

In the car afterwards Joe and I did exactly what many readers did. Joke about what I could put on the back of my chair to stop people.

But.

Realization.

I don't want to wear a sign.

I want the usual signs of respect that non disabled people take for granted.

You know, like not being assaulted, in full view of many, in daylight hours, outside a grocery store.

Friday, April 19, 2019

Parking Lot Realization

You know this story.

But I need to tell it again anyways.

You see I realized something.

We parked at the grocery store and I got out. Joe was gathering bags and lists and stuff and I headed off to the store myself. I got to the curb in front of the store, paused, and began to push up. It's difficult for the first few seconds because of the steepness of the grade and because of the bumps that need getting over. But I was doing it. He came at me from straight behind me. I didn't see him. There were lots of people going into the store, lots of people around. Then I felt him. My chair was grabbed, he started pushing. Not a word had been said. I screamed, I don't usually scream, "Stop." Now everyone was watching. "LEAVE ME ALONE, DON'T TOUCH ME!!!" He started to stammer about helping, "LEAVE ME ALONE!" People looked at me as if I was rabid, people looked at him with a 'poor you' look. I pushed myself into the store.

Joe, who had heard the commotion, came and started to apologize for not being able to stop him. I was left feeling like an asshole, someone who made a scene, primarily because people were glaring at me. Glaring. And then it hit me.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

Now that I've calmed down and looked at my reaction. I think any other person who had someone sneak up from behind and grab them would have reacted fairly similarly. The only difference being that no one would dare to do this is broad daylight. I believe that if it had happened to someone else, the police would have been called, and people would have offered some kind of comfort.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

Under the guise of helping we can be grabbed, pushed, forced; we can be stripped, force fed, confined; we can have our bodies touched, we can have our voices put in restraint, we can have our protests met with punishment.

Helping.

Just helping.

Assaulting disable people is acceptable.

Disabled people reacting to assault is not.

Thursday, April 18, 2019

A Voice, A Visit

Yesterday morning, I awoke, could feel Joe stirring beside me, so I wished him a good morning. We both paused. My voice was back. I'm almost crying at the writing of this. You see I came out of the hospital with a new voice. A weak, soft voice, full of holes, the kind of voice that comes from sickness and ill health, it was a voice with no strength, no power. It has a hospital voice suited to choosing jello or ice cream to nurses straining to hear.

But yesterday morning, my voice, my real voice, came for a visit. I sounded strong, my voice had power and intonation and seemed desperate to tell a story. It was a remarkable difference. I had wondered if it had gone forever. I wondered if I was to be forever mourning its loss.

But no, it was resting too.

It didn't make the whole day. It lasted until early afternoon. Which I thought was a good long time for a visit. It's back again this morning.

It's early but I want to rush out and try it on someone.

But I won't.

I'll be able to use it at work.

There are so many things that illness takes from you. There are so many things lost. But some come back.

Thank heaven's one of those has been my voice.

It's not a pretty voice, or a classy voice, but it's been a strong voice when I've needed one.

And again this morning, it's home.

Wednesday, April 10, 2019

Way It Should Be

We've been at the mall a little more these days. It's one of the few places where I can get some exercise without pushing myself to hard. When we go on weekends, we often stop and have lunch in the food court. I pretty much always go to the same place. The food is good. There are lots of vegetarian options. The people who work their are nice.

So what usually happens is that Joe goes to order his food at one of the other places, he has several favourites, and then when I see him in line, having chosen where to go for lunch. I go to my place. We time it so that I order and pay and then Joe goes to pick it up. It's a routine now, they know both of us. It works well.

A couple of visits ago, Joe decided to eat at the same place so we placed our order with the fellow who runs the place, the same guy I usually order from and give my money to. He looked at the two of us and asked, "Are you brothers?"

Joe and I look nothing alike. Even so we often get this question. I think people see that there is a relationship, a bond, between us and then they try to figure out what that might be. For some reason, they never, ever, think that we are married, or even dating.

The question threw me. I like this place and I like the food. But I wasn't sure what their attitude would be if they had to contend with the actual nature of our relationship. I didn't have time to decide anything. Joe answered quickly, "Hell no, we aren't brothers, we're married, he's my husband."

There was a moment of shock on the faces of those behind the counter and those in the line behind us. It was like they reacted in several ways.

Oh, they're gay.

Oh, the fat disabled gay is in a romantic sexual relationship.

Oh, I don't want to picture that.

But. And here's the 'but' that mattered. Nothing changed. I've been back since. No change. Same welcome. Same sense of ease.

That's the way it should be.

But often isn't.

Tuesday, April 09, 2019

Need

I need so much more from people right now.

One of those things is something I've written about a lot.

I need to be let alone, to be allowed to just get on with my day, to be relieved of the burden of inspiration, to be just another anonymous person in the community. I need to be let alone.

I'm tired.

All the time.

Tired.

The doctor, my blood tests in his hand, assures me that I'm on the right track, that I'm getting better, but that it will be slow. My tiredness isn't going to go away any time soon.

So.

I'm tired.

Just being wears me out.

Doing is another thing entirely.

So.

I'm pushing from the car park to the mall entrance. At the edge of the parking lot the sidewalk slopes upwards to the door. Only a couple weeks ago I pushed up this with no effort at all. Flew up. But now, it's work. I can do it. But it's work.

I'm pushing up, the effort is showing.

My heard is glad, I know I'm going to make it.

Now, suddenly, I'm fighting off help.

DON'T TAKE THIS FROM ME!!!

I NEED THIS!!!

I'm called rude.

I'm not.

I'm just tired.

And I want to get better.

I don't have time to caretake the feelings of those who need me for their own purposes.

I don't want to speak sharply.

But what other way do I have to communicate that in this situation, MY NEED MATTERS MORE.

I am not your teacher.

I am not your random act of kindness.

I am not her for you.

I made it to the top. Victorious.

This was something I had to do to remind myself that I am coming back to me. I'm coming back to strength. I'm coming back to independence. I'm coming back.

Back.

Monday, April 08, 2019

An Odd Conversation

The oddest conversation.

I am sitting in my office at work and a fellow with an intellectual disability pops in and says that he'd heard that I'd been sick. I told him that I had been. He said that he'd heard that I'd been very sick. I told him that was true that I had indeed been very sick. He told me that he was happy that I was well enough to be back at work. I thanked him. Then he said, and I quote, "Just remember, getting sick isn't your fault, everyone gets sick." I asked him what he meant by that, "All people get sick, not just disabled people, all people." I nodded and he left my office. Message delivered.

I hadn't actually thought that getting sick was my fault. Never crossed my mind once. Not once. But since that discussion I've discovered that not everyone felt that way. Any number of people were convinced that my illness had something to do with my disability. In fact, I'm afraid to say that I've discovered most people had made a connection when none existed. In discovering this, I also found that, in some way, people were making this the result of my disability and that in there somewhere was a personal kind of blame.

Not everything that happens to me happens to me because I have a disability. Not everything is related to my wheelchair or my difficulty with walking. Not everything about me has "dis-" preceding it. And that includes my vulnerability to illnesses. I do not believe that bacteria have an address book listing those people who are 'just' targets of their violence.

Yes, I got sick.

Yes, it was serious.

No, it wasn't because of my disability.

No, it wasn't my fault.

I shouldn't have to say any of these things. But I do, and will over and over again. I have spent my entire working life, my entire life as a disabled person try to establish the uniqueness of the disability experience as it's encapsulated within the commonality of the human experience.

All people get sick.

It was an odd conversation with an important message.

I hope to see him soon and thank him.

He taught me.




Saturday, April 06, 2019

Maybe Too Much Information

If on the odd chance you have the opportunity to walk by the bedroom of a couple that's been together for over 40 years and you hear gulps of pleasure emanating from the room. 8 out of ten times on the other side of the door, they're scratching each other's backs. Yeah. Man. Sex is awesome but that itch that's just out of reach - priceless.

Stop here if you are afraid of too much information.

I just want to make a point.

A lot of what I've gone through has been painful. My body hurts as it heals.

That pain.

Constant.

The body.

It's cause.

Or that's how you see it.

But last night in bed, Joe scratched my back and got that sweet sweet spot. My whole body tingled with pleasure.

It felt good.

To feel pleasure.

In my body.

To be reminded.

Of the gifts it can give.

I fell asleep with the hope that the morning bring more pleasure and less pain. It's nice to think that way, like the whole thing might be possible.

Friday, April 05, 2019

The Context of Wonderful

Something quite wonderful happened yesterday. To understand why it was so wonderful, you'll need some context. So here goes ...

Because I have a history of making bad, even stupid, decisions about my health, my initial fall and loss of strength didn't trigger an immediate trip to the hospital. No, that happened on a Saturday and on Monday I was scheduled to do a four day lecture series. I decided that I'd go do that and then deal with whatever went wrong. Somehow, in my mind, the possibility of it getting worse never crossed my mind, I had it that it would go on hold, I'd do what I needed to do, and then I'd get to the health stuff.

Well.

I made it through two days of training. On the morning of the third, I knew I was worse, much worse. The night had not been kind and now I knew I was in trouble. I told Joe that I couldn't do it, we'd have to cancel and go home. I hated doing it, I hated myself for doing it, but I knew I had to do it. The audience had been a nice one, lovely people, paying attention, and asking good questions. I felt I had abandoned and betrayed them. But. I was desperately sick.

During hospitalization I had to cancel a number of trips. It was clear that I had been hit hard by this infection, that I had to rest and take time to get better. It all weighed on me, almost to the point of crushing my spirit. It was like one part of my brain was saying, 'good boy, you are making all the right decisions and taking care of your health and your future,' and another part of my brain was saying, 'you failed, you failed all these people, you let everyone down, who will ever trust you again?"

Then I realized I was fighting a double battle, one for my physical health, one for my mental health. I needed to be taking care of both. And, again, I think I was managing that. Look, I'm back to blogging.

But then yesterday I received an email.

It was from someone who had been at the four day training that had suddenly become a two day event. She was there when I fell ill. She just said that she, and others, had been thinking about me and were hoping that I was doing well. Then she said that she had enjoyed the training, that she had learned from it and that it had been valuable to her. Even just the two days. She'd like to hear me again.

I can't tell you how much this cheered my spirits! I felt that because I didn't make it all the way through I had wasted their time, that I hadn't given them anything. But this was the darkness talking. Here she was saying that what I had done, even in just two days, had mattered. That I mattered.

I don't know what inspired her to write me that note. But it mattered. She mattered.

I wrote he back and told her that she must be the nicest person alive.

She had been there when illness took me from doing what I loved. I had imagined how people felt being abandoned by their instructor half way through a course. I had been wrong.

I got up this morning feeling a little brighter, a little lighter, a little more like the battle is worth it.

Onward.

Thursday, April 04, 2019

For a Day or Two

Spotless.

Uncluttered.

Organized.

I came through the door and almost didn't recognize the place. Joe had been busy cleaning and tidying and it really showed. The place hasn't been like this since, well, never. We don't live like this. We're clean but we're untidy. Books piled on the couch. Papers littering the front room. Dog toys and bits of dog toys hiding just under the lip of the chairs. We live here and it shows. But today it looked like we'd walked into a display unit and that a salesman would come soon to talk us into a time share.

Once in, I sat down in my chair and immediately pushed the button that raised my feet up and I settled in. I asked Joe if he wanted to watch something on television for a few minutes. He was frantic. "No," he said, "I've vacuumed the floors, now I have to wash them, then I have to change the sheets on the bed and tidy up the bedroom." I looked at the floors, they were already spotless. But, in seconds he was in there with the mop washing every square inch.

"I'm making the bed in case you need to be see in there rather than out here," he explained.

When he was finally done I took a look and the bedroom looked amazing. Everything had been organized and dusted and arranged for public view. "WOW". I sad and could see from Joe's face that this was the right response.

So what was going on?

We were going to have our first visit by the home care nurse who was coming to ensure that the healing was progressing. That I was fighting off the infection. That I was getting well.

In Joe's mind, he was going to get graded on a scale that veered from 'loving spouse' to 'slovenly attendant,' and he was determined to pass the test.

The nurse ended up being almost 4 hours late, but she came in and worked with me in the front room, I almost wanted to invite her to glance into the bedroom because it looked so awesome, but I figured that would be weird.

She pronounced me 'on the road to recovery.'

I am now officially on notice.

I'm getting better.

And I live in a very, very, clean and tidy home. (For a day or two at least.)

Wednesday, April 03, 2019

What Happened: In Brief

So.

It's been a rough ride.

I apologize for simply disappearing from this blog.

I've heard from some of you, thank you for your concern.

You were right to be concerned.

I went to bed one night feeling good, feeling strong, having had a good workout and looking forward to the next day.

I got up in the morning in a vastly and impossibly weakened state.

Then.

I fell on the floor.

It's all a bit of a blur after that.

I made some bad decisions.

I made some good decisions.

I presented myself to the hospital and about 12 minutes after seeing the doctor I was admitted with an IV bad dripping into my arm.

So much happened there.

So many stories.

No energy to tell them.

Once out of the hospital, I'm going to clinics and having nurses come to my house.

More stories.

Still no energy.

I'm writing this today because I feel a bump of energy this morning and I wanted to use that to update you here.

So many of you have followed this blog since it started.

I wanted you to know.

I do want to come back to more regular blogging. But give me a little time yet. I'm still fighting to get through the days. My health is returning more quickly than my strength or my energy.

Thanks for your patience.

Sunday, February 24, 2019

Oh Well

The noise caught her attention first. She wasn't startled by it, not at all, but it did call for her to look over towards the door. We were entering the mall through a different entrance than we normally use. As we went through the  center set of doors, I made the comment that every entrance should have electronic doors. Joe said, "Oh, this one has it too," and went over to push a button on the big door to our right.

And then all hell broke loose.

There was an explosion of sound.

Gears grinding. Metal popping. Blasts and banging.

The door didn't open at the end of all that.

We were stopped still, afraid that something was going to explode out of the machinery. Seriously, it sounded dangerous. It stopped. Joe looked at me and said, "I think we'll use this door, and we went through.  As we did so the staff who had initially had her attention pulled by the sound was long gone.

Only later did I realize that her boredom, after her initial attention, wasn't just about her job but about the situation as well. She had known the door didn't work, had heard the sounds before, and they were meaningless to her.

That's a big part of the problem that we have as disabled people. The issues that have a dramatic impact on our lives are meaningless to those without disabilities.

Who cares that the door doesn't open when I can easily open and enter myself?

Who cares if the cut curbs are in bad repair when I can easily step over rough patches of pavement?

Who cares if the options are reduced for disabled people when they are never reduced for me?

The things that impact our lives as disabled people seem frivolous to the point of meaninglessness. No one in that store has done anything about the door, and they probably all know about it. There is no sign of intervention. No sign of repairs under way. No suggestion that other doors be used. Nothing.

That's left to me.

That's left to some other disabled person.

That's left to some family member or support person who needs the door to assist with entry for their child or the person they serve.

It's already work enough to be different in a world built for exclusion. A world where the word 'modifications' means that a gift has been given, that the 'typical' has been 'adapted.' Shouldn't access be the norm rather than result from the norm being modified?

Oh, well.

I'll call on Monday.

Saturday, February 23, 2019

And I Wonder

We were waiting to go into a clinic where I've gotten an appointment to see a nurse. There are a number of people waiting and we'd had a difficult time finding a place for me to park my chair. I'm very wary of 'sticking out' or 'being in people's way,' so Joe and I have to move a chair out for me to get in, sounds simple, often isn't. But I'm there. Waiting.

A fellow comes in, like me a wheelchair user. He has no difficulty in sticking out and just backs up against an existing chair. He is a talker and he starts to chat with Joe who is sitting right beside me. I make a few attempts to join into a conversation that I found interesting and was firmly rebuffed. Nothing was said but it was as if I was nothing and nowhere and he wouldn't even look at me. Not a glance.

He talks about his wife and then describes the accident which led to him becoming a wheelchair user and they talk. I give up, pull out my phone, and start to play the game I've just downloaded and am fascinated with. I get it. I'm not wanted in the conversation.

And I wonder.

Why do we do that? Why do we do to each other what other people do to us? Why do we take the worst of how we are treated and instead of rejecting it instead of fighting against it, why do we do that to each other?

I am on line. A woman with a disability has just written a post about something related to her disability and her experience. She never claimed that what she was saying applied to anyone but herself. Her post described her lived experience and then outlined what she took from that experience. It was a good post.

But then, in the comments, oh my. People were out for blood. They attacked her. They accused her of her experience not being real. They accused her of taking the wrong things from her own story. They said that her reality wasn't their reality. They accused her of trying to speak for others. It was cruel. There was a level of meanness as people jockeyed for top spot on the heap. What's up? This is us!

The next day she had deleted her post.

She had been silenced.

The people commenting were also, primarily, women with disabilities. A few men thrown in there as well, and while some thanked her for her honesty and insight. The attackers outnumbered them at least 4 ro 1.

And I wonder.

Why do we do that? Why do we, who have been silenced, we whose voices have often not been heard, strike down one of our own and disallow her from speaking her own truth, her own reality and call into question her own ability to learn from her life. This is us!

A boy with an intellectual and physical disability sits listless in his chair. It's a bright green chair and he's wearing a striped tee shirt of a matching colour. He is maybe 6. He looks bored. He looks lost. He looks alone. He sees me rolling towards him and his had lifts and waves, there is a brief smile. I wave back. He is with his parents. His mother and father are behind him. They have stopped to talk with another couple. Their conversation swirls over his head and to the back of him. Even if he twisted he would not have been able to see what was going on.

I push by. They are talking about inclusion! They are talking about how the school board does a terrible job with inclusion. They talk about how their son is rarely really included. They do this behind his wheelchair, out of his sight, they leave him alone and lonely on the edge of the group, looking out.

And I wonder.

Why do we do that? Why do we fight for an inclusion that we don't practice ourselves? Why do we developing ideas and ideologies about disability and see them as things that others should do? Why do we so easily leave out those who we love the most? Come on. This is us!

This is us.

THIS IS US!

and we know better

Friday, February 22, 2019

All of Us: A Gay Man's Response to Jussie Smollett

I do not apologize for believing Jussie Smollett.

There is a growing chorus of people who, delighted at the idea that his beating and abuse was faked, are taking control of the discussion of racism and homophobia. They feel they are in the driver's seat now, as if they haven't always been, and are making it clear that claims of institutional and confrontative  prejudice doesn't exist, or if it does, it's minor and even then, exaggerated.

They laugh at those of us who had hearts that hurt at hearing Mr. Smollett's story. The talk about 'confirmation bias' as if we are always sniffing around looking behind shrubs and trees to find the rare and brittle branches of bigotry. While they exult in this moment I wonder if any of them will wonder why I believed Jessie Smollett.

If we were so easily tricked, why would that be? We are people who hang up the phone when robocalls warn that the police will come if we don't pay up on fictitious taxes. We are people who know better when fast talking cons try to sell us our own shortcomings. If we were tricked why were we tricked.

"Because you want to believe in racism and homophobia so badly that anything that confirms your world view you scoop up like baked brie!" is the suggestion.

Racism.

Homophobia.

Those aren't things I believe in. Those aren't abstract unproven hypotheses. They are concrete and deeply embedded historical realities.

Why would I believe Jussie Smollett?

Why would I believe that 'outrageous' story?

Because I've lived it.

Not all of it.

I am a white, gay, disabled man.

I only speak to what I know. Homophobia exists.

I shook hands with prejudice a long time ago. I grew up and before I knew who I was I knew who I was was wrong. Do you realize that people have to come out because they've been locked in? We hear the words said around us. "Fag!" "Sissy!" "Gearbox!" "Pansy!" We hear them as children and innately we know what those words mean, and we know that we need to find a shady spot to hide ourselves in. Shame makes a good blanket under which we hurt ourselves. We are our own first bullies. We are intimately connected with violence. We use it to punish our difference.

Leaving 'Buddies' a bar in Toronto years ago required walking a few steps down an alley. It was terrifying to enter and terrifying to leave. People were beaten around there. People were hospitalized around there. And no one told. Silence was the only option when discovery would cost jobs, and family, and even lives.

It wasn't hard for me to believe Jussie.

Marching in an early pride parade, long before corporate sponsors, long before pride was a product, Joe and I walked side by side. A rock is picked up. It whizzes by my face and hits Joe on the shoulder. No damage was done, except it's odd that its that same shoulder that Joe has trouble with to this very day.

It wasn't hard for me to believe Jussie.

Crossing the English channel in the Volkswagen beetle we meet a young black woman. She is bright and funny and told one helluva story. When the boat docked we invited her to ride with us to London, she took us up on the offer. We talked and laughed on the drive. We watched night fall and when we arrived in London we started looking for places to stay. We had some sort of student guide to where travelers could get good rooms cheaply.

When Joe and I went into get us a room, we mentioned that we were traveling with a woman who also needed a room. Rooms were available, the price was right, and we were signing the register when she came into the lobby. Suddenly there were no rooms. They made it clear that they hadn't realized that she was, 'you know.' This happened at every stop. At one point, three refusals later, she became really upset and yelled at the manager. Called him a racist pig. He, in turn, called the police. They arrived instantly, the colour of her skin being a magnifier of the concern. The hotel guy over described what happened, said that he wasn't racist but what was he to do - being the manager of a place with disappearing rooms, it's just so hard.

We were brought to the police station.

We were let go.

She was held.

We didn't get a room for that night. We parked outside the station and waited til morning. She was let out. She looked like a different woman. She looked defeated.

We drove her in silence to where she was to catch a train.

Said goodbye.

And she was gone.

It wasn't hard for me to believe Jussie.

I don't apologize for believing a story I've heard before, a story I've lived before.

I have no claims to understanding the experience of racism, I have observed it, I know it's real, but that is not my story to tell or the pulpit on which I choose to stand.

I do have claims to understanding the experience of homophobia, heterosexism, disphobia, and ableism. I get those.

I don't believe in them.

They are facts.

And until they are not facts.

I will always give my heart out to those who have the courage to speak.

I don't care what happens next.

Cause this isn't about Jussie.

It's about us.

All of us.