Thursday, June 21, 2018

Home

What a night!

Joe and I were at a meeting in the community center in the area in which we live. We were both tired from the trip from which we'd just returned but we were looking forward to going to the meeting and playing out part in the life of this community. I hopped into my power chair, which I haven't used in weeks, and we sailed down to the meeting.

After the meeting was over I had to stay a little bit longer because I'm on the board and we had a few things to vote on. I turned on my chair to turn it around and it just died. Simply, quickly, died. So instead of me going down to the rest of the group, they shimmied down to where I was sitting. I was informed that the hall in which we had met was empty the next day so we could leave the chair there overnight if we needed. I was lent a phone to call Joe and ask him to bring my manual down so I could get home.

After the votes were over and we adjourned for the night. Joe came and we were trying to figure out timing we had a full day the next day. In both our minds we were worried about Joe pushing the chair up the hill to our place. The chair can be disengaged and pushed, but it's a big, heavy chair. Our first problem though was the fact that Joe had been unable to get the lever that disengages the chair and turns it into a push chair to work.

Just then I saw a young guy come into the community centre where this was all happening, he was called into the room and asked if he could help with the lever which seemed to be stuck. Joe showed him by saying, and showing, "You just need to do this," and with those words, the lever worked.

There were others around from the board meeting and suddenly discussions were happening about the chair and getting it up to our place. A women, with organization skills aplenty, suggested that Joe drive me and my manual back to our place and this young guy push the chair for us and meet us there. Joe and I protested and they protested right back, "Not a big deal," he said, "I'm glad to do it."

On my way out of the building I said to everyone and no one, "When you have something really shitty happen and then someone does something nice the world comes right again." And that's what it felt like. A crisis had been averted. There's still the problem of the chair but that now moves into a some "tomorrow" sometime situation.

We got home and he'd beat us there, it's a long push, and a hard push, but he was there with the chair. We thanked him for his help, he assured us that he was glad to help. And we were home.

When a community is a community, when a community lives up to it's potential as a community, everyone benefits. Joe and I, who strive to be self sufficient, sometimes aren't. It's nice to know that we live in a place where neighbours matter, where help is given because it's needed, where the principles of community are upheld.

We've never felt so at home anywhere in our lives.

Wednesday, June 20, 2018

One Boat, Two Women

We got on the boat from Nanaimo to Vancouver with our emergency flashers on and with a bright red wheelchair placard given us from the woman who took our payment and instructed us to put it on the dashboard. These things alerted the folks who load the boat that I use a wheelchair and to place us strategically so we would have maximum access. They have done this every time unerringly, frankly, they must hire people based on a Tetris aptitude test of some kind.

The fellow who spotted the lights came over and asked which side we needed room on and when we said, "Well, kinda both," he said, "No problem pull over here and I'll load some more on and then I'll tell you when to move ahead." The did as he promised and a few minutes later pointed to where we were to park. We were a couple feet back from the car in front of us but right beside a blue access symbol that lead to the elevator.

Joe got out of the car and found himself confronted by a woman in a car in the next lane. She was practically yelling at him to get back in the car and move it forward. Joe stated that we parked exactly where we were told to and that if he moved I wouldn't be able to get out my side and he couldn't get the chair out the other. She didn't care. She wanted the car moved and NOW! Joe stood his ground and she left shaking her head in disgust.

Normally it's me targeted with this kind of thing and while it wasn't nice for Joe to take the brunt of her upset, I was glad to be left out of it. He said, as I got in the chair, "You're the one with the blog, this isn't supposed to be about me." We laughed it off and headed for the elevator.

When we got there there was a family of four waiting. A mom, a dad and a boy and a girl both close to their teen years. I pulled in and sat back to wait, we were in no hurry, but then, the mother spoke up to her kids. "He," she said referring to me, "has the right of way here, we can all take the stairs." Then, they were gone. Just like that. Moments later the elevator arrived, empty and we made our journey up.

There's nothing so odd as people. We can never predict from whence will come the anger and from whom will come the kindness. It keeps us alert. Very.

But what's nice here is that that nasty woman yelling at Joe, she's going to be gone in a few months from our memory, she will just blend in amongst those who were and are similarly grouped tightly under the nastiness umbrella. But the other woman, will stay, I think I will remember her and her voice and her gentle urging of her family to move along and create space for us for a long, long time.

Beyond being kind.

What an inspired act of parenting.

And absolutely inspired act.

Tuesday, June 19, 2018

Aunt Vesta

Years ago my Aunt Vesta came to stay with Joe and I in Toronto for a little while. When we got the call that she was coming we were panic struck. We were not 'out' to many of my family, it was still in era in Canada where acceptance and welcome of gay people was not the norm. We had a one bedroom apartment. We lived in the gay area of the city. Most of our friends were gay. Even the art we hung on our walls were done by gay artists active at the time.

What were we going to do?

I knew Aunt Vesta from growing up. I knew several things about her. She had the best laugh. She was easy to be around. She was a patient listener and thoughtful in what she had to say. And, best of all, she had a wicked good sense of humour. This is to say, she was a nice person. But, we'd had 'nice people' turn on us instantaneously upon finding out that we were a couple. We knew that we couldn't predict how people would react. We knew that love of family isn't always there as greeting cards proclaim.

But.

We had to tell her.

We decided to let her get settled in. Didn't want to tell her on the ride from the airport. The closer we got to the 'telling' the less we wanted to have to tell her. But it had to be done, there was no way we'd be able to de-gay our lives like many of our friends did when parents visited. While waiting to tell her I was reminded about how nice a person she was, how she was able to embrace us with her warmth. I didn't want to lose that, it was just too valuable.

But.

We had to tell her.

We took her out for dinner, figuring a public place was safer, and we told her. She nodded after having heard our announcement and said, "... is this supposed to matter to me?" In six words she acknowledged us, accepted us and welcomed us into her heart. Then, we were done with it. Over her visit we went to gay bars, she insisted, and she charmed everyone.

Aunt Vesta, and her reaction, set her apart from so many people at the time. In fact, it sets her apart from so many people now. She had the depth of understanding that people were simply people. All different, all the same, all to be respected.

After she left we felt a hole in our lives.

But.

There was something I had to tell her.

I hadn't been able to articulate to Aunt Vesta how much it meant to me, and to Joe, to have her embrace us and our relationship. I would have started crying and I didn't want to be maudlin. So I waited for a couple of months and then I called her and we talked about telling her.

I could tell that she was touched by what I said but I could also tell that she didn't understand the big deal. She didn't understand what a big deal it was to have a heart as big as hers was. She didn't understand that we'd been prepared for her rejection and what it was like to anticipate the worst but get the best of someone.

This is now Pride Week. I've been thinking of some of the people in my life who helped me along on the way to pride.

Aunt Vesta was one of those who stood on the side of the road and pointed to a world wherein it was possible to be loved, not tolerated, but loved instead of rejected. To a world where difference was just difference, nothing more, nothing less. To a world where one's heart was free to love as one pleased. I always knew that my heart loved differently, that's how people define who I am.

But it was amazing to see how Aunt Vesta loved differently too ... she loved inclusively.

Monday, June 18, 2018

From Us Gearboxes

Three flags flying in front of the Tyee Plaza in Campbell River. The tallest is the Canadian flag and then two flags of equal height, the LGBT2SQQ pride flag and the British Columbia provincial flag, are caught flying in the breeze.
When we drove into Campbell River on Friday one of the first things we noticed was a sign announcing a Pride Celebration. We went by so quickly that we weren't able to read the dates or times. We looked it up, kind of hoping it might be this weekend past, and found that it's happening next weekend. We were busy, getting into the hotel, arranging to see various and sundry family members and organizing our suitcases which had become a little dangerous to zip open and almost impossible to zip closed, so I didn't have a chance to think about the celebration and the flag, and we didn't have a chance to talk about it.

The next morning began with Joe and I heading over to the laundromat to do piles and piles of laundry. The web site had been wrong about the opening time so we were there an hour early. I rolled down to the flags intent on taking a picture. We both chose not to make it a 'selfie' because, well, we couldn't. Just couldn't.

I know we are told to live in the present but any thinking, reflecting human being knows that the present has echoes of the past that will reverberate into the future. Joe had been horribly bullied in school with a nickname so vile I won't even record here, except to say that it targeted his sexuality and his masculinity and his right to belong. I met Joe in CARIHI the high school here in grade 12, and that's were our relationship began.

CARIHI apparently has done things to be more inclusive to lgbt2sqq kids now, but, then, violence, social, verbal, psychological and physical were to be expected if we were ever caught. Other kids, the straight ones were dating and making very public displays of their love, their orientation and their expectation of welcome. Everywhere you looked the constant celebration of heterosexual pride and privilege was on display.

The most common word linked to homosexuality back then was one we still don't understand to this very day. It was 'gearbox' or more accurately 'fucking gearboxes.' People we knew, were never people who knew us, we couldn't allow that to happen, we learned to pretend in public and live in private, but those we knew threw that word, and others around all the time, fully confident that there were none of 'those' here.

CARIHI was a place of welcome for most and terror for us. There were so many ways to slip up. So many opportunities to be suddenly seen. Every single day, every single moment, was one of either fear or terror or anticipation of social violence. High school was a dangerous place, high school should have been full of memories - happy ones, not the ones we carry.

Campbell River, too, was a mill town. Men were men and, when people say that as a good thing, I tremble. Those good men would turn evil at the suggestion that a fucking gearbox might be in the vicinity. Campbell River did not value diversity in a variety of ways, and so we lived on the margins trying desperately to exist without notice. Our love made us vulnerable. Think about that.

And now, there's the Pride flag.

And now, there's a Pride celebration.

We're glad of that, the both of us, but ... how can anyplace embrace Pride without the acknowledgement that Pride is not something gifted by city council, Pride was something that people fought to have, in places like this, and against all odds.

How can Campbell River celebrate Pride now when in inflicted Shame then?

Where is the apology?

Where is the acknowledgement of the damage done?

If you actively participate in smashing someone's windows, you apologize and then you fix.

But if you actively participate in smashing someone's soul, you look up at a flag and wonder at how far you've come.

We both wish the citizens, all the citizens, of Campbell River a happy Pride celebration. However as people who come from before, we know your hearts, show us that you've changed. Not by flying a flag, but by acknowledging your history, and pledging, no more.

No.

More.

Sunday, June 17, 2018

Father's Day: Enough

Dad's not here.

It's Father's Day and this is the first one where he will not be in attendance. I've been thinking about him a lot because I've been seeing things in the stores that I would ordinarily buy and send off to him. But, not this year.

My father and I did not have a close relationship. He was very uncomfortable in speaking with me, so he typically said, when answering the phone to my call, "Here's your mother." We once had a fight about that, and as a result he tried to chat for a bit before turning the phone over but it was a conversation that came wrapped in discomfort and artificiality. I came to wish the fight had never happened and that the idea of 'trying' to talk with someone makes whatever said nonsense.

I visited a few times over his last months and the last time I was there, we both knew it was the last time. Joe and I visited in the early afternoon when no one else was there and I noted a subtle change in the room and with my dad. There was an intimacy and a desire for intimacy. It started with Dad telling us some stories from the war. Turns out my dad was one hell of a story teller. He was funny and had the gift of knowing when to pause and when to deliver a line. We laughed, loudly, listening to him. He was enjoying himself. There was no 'trying.'

When the moment was right, I decided to let go of this wrapped up thing I'd held in my heart for a very long time. There was something I wanted to say to him, something I wanted to thank him for, but it was so personal that I thought that I'd never get to say it. But I did. It took him by surprise, thinking, probably, that I only held anger in my heart with no room for gratitude at all. Then he said that he was pleased because I'd landed right. I was where I was supposed to be, doing what I was supposed to do and living with the man I was supposed to be living with. He called me lucky.

I don't know when he came to that realization, I don't know if it was the hours in the hospital that gave him time to think or if he'd been carrying that too. In the end, it doesn't matter.

What mattered was that I came to peace with my father.

When we left and said goodbye, we knew we'd talk on the phone, but we knew that we'd not see each other again. But while we were both aware that there had been a thousand and seven missed opportunities, we had come to peace.

And, in the end, that was enough.

Saturday, June 16, 2018

The Johnson Street Bridge

Yesterday I took a giant step towards being 'the guy' that I want to be ... in my mind. I'm not talking about 'THE guy' ... that nice, thoughtful and caring one that escapes my grasp so often, but the one who can physically push himself outdoors. I see wheelchair users sailing on their own steam up and down streets looking relaxed and fit and totally in control. Well, I'm no where near relaxed and fit and in control, I struggle and pant and sweat and occasionally curse. But ...

We were going out for dinner to a restaurant in Market Square in Victoria and I really wanted to push myself there and back. It wasn't a great distance from the hotel but it required pushing up a fairly steep incline, going over a walkway spanning Johnson Street and then over the bridge to the square. I'd looked at it several times over the day and decided that I was going to give it a go.

I suggested to Joe that we leave an hour early because I figured that it would take me a long while to make the push. The steep bits are, for me, quite steep. I wanted time to pause, push my lungs back into place and start again. So, we set off.

The first few feet were fine, but it was flat. Then started the climb. It got steeper and steeper and I went slower and slower. I didn't use my safety breaks, which allow the chair to go forward but not backwards, because I don't want to start relying on them. So I was pushing hard and grunting loudly and absolutely not caring what people might have thought. Joe stood guard to ensure that no one helped me. It wasn't much of a struggle as, it turned out, most people seemed to respect what I was doing and left me alone to do it.

Once over the walkway it was downhill until the bridge and the climb up the bridge once again slowed me down. But, again, I used every bit of power I had to make it up and crest that little hill and then it was easy to the restaurant. We were there in about 15 minutes. That was a shock.

With the extra time I pushed up Johnson Street to the first crosswalk and then headed back. I felt victorious but remembered that going back had the longer incline, though not the steepest. After a fun dinner we headed back and again, with one notable exception, people left me alone. I can't say how much I appreciated that. I knew I was going to make it and I didn't want someone to steal that from me but shoving me a foot or two.

On arrival back at the hotel, I was winded but not exhausted, I was sore but not really hurting. I silently thanked the gym back home where I work out and practice ramps. It was marvelous.

I know that I'm a long way, really long way, from where I want to be.

But I'm a little closer.

And that's worth something.

Friday, June 15, 2018

A Letter to the Snipers

Dear Camera Snipers,

Yes, I dared to be in public. And, yes I saw you see me. I saw your smirks, and grins, and pointed fingers. I saw you raise your phone and take pictures. All of you took your time, wanting a good shot. You knew I could see you. You knew I was trapped, unable to escape you. You didn't care about my obvious discomfort, my obvious lack of consent to the photo being taken. I saw you, all of you, take the photo, look down and scroll through the images, select a picture and send or post it somewhere. Probably with a witty quote about my fatness, my disability, my blatant, in public, me-ness.

I know that others will look at these pictures and laugh, maybe forward them, all of them feeling superior to me. None of them will wonder why you did what you did, why you thought it was okay, why you thought that your meanness was an appropriate message to send them. I am forever in that picture. I get it.

But here's what you don't get.

I got out of the car, I went where I wanted to go. I knew that you would be there. All of you. Not you exactly or you personally, but nasty people like you. You are not unique, even though you think you are, you are ubiquitous. Nastiness is not humour, even though you think it is, and for the millions who would agree with you, that I am worthy target of your humour, nothing separates you from them in my mind. I will not remember you as you, I will remember you as just another.

So I got out of the car and went where I wanted to go. When you took that photo of me, each of you, in rapid succession, you thought you saw a fat guy in a wheelchair. You got that wrong. Yes, I am a fat guy in a wheelchair but I'm also performing a radical act of defiance. I am there not despite you but to spite you. It's my way of saying, 'Fuck you, I do not give you the power to keep me locked safe at home and away from your gaze.' It's my way of saying, 'This is my community too you ignorant piece of shit.' It's my way of swearing and cursing at those would would objectify me, dehumanize me, and devalue me.

I am HERE.

I am OUT.

I am FREE.

Your weapons of social violence can't stop me. Your smirks can't stop me. Your cameras can't stop me. I protest you and yours, and all the other faceless, nameless bigots who think they are better because they can't really think at all.

I know what I'm doing.

I know that you took a picture of my defiance.

I know that someone will notice that I just stared at the camera. I didn't blink. I didn't look away. I wanted whoever looks at the picture to be confronted by my eyes.

MY EYES.

Because you have a picture of my body. I have a picture of your character. And guess what? What I think matters too. You will one day look at that picture and see me. And feel shame. I may one day remember you, all of you, each of you, and see who you were in that moment.

I'm proud, in this case, to be me because I couldn't bear the shame of being you.

Your Subject,

Dave Hingsburger

Thursday, June 14, 2018

space and welcome

I was speaking at a conference over the last couple of days and I found myself in nearly constant awe in regards to how the whole thing was organized. Let me give you some examples:

1) there was a ramp to the stage in the room I was presenting in. A good ramp. One that had a flat entrance onto it ... amazing.

2) seats had been left available for wheelchair users in the room. This is a common complaint of mine, I go for training and have no-where to sit.

3) I'm given announcements to be made and one of them was to remind the audience not to take or use the accessible seating unless it was being used for the purposes of access.

4) There is a darkened room, and signs around it to be quiet and to not use cell phones in the area. It's a room for people to escape into the cocoon of darkness and silence just to get away from the noise and the lights and other things that cause sensory overload.

5) The accessible space actually was. Clearly they went to the site and checked it all out. Not a single barrier for me, not even the carpet, which was of the roll able type.

It's one thing to be greeted by organizers, it's another to be welcomed by the physical space.

It was a marvelous experience.

They got it right.

Wednesday, June 13, 2018

Eyes, Toilets and Teaching

I got glared at today.

I think I was supposed to feel badly.

The look certainly sent that message.

But I didn't.

And I don't.

I had gone into the toilet to use the accessible stall. When I arrived the stall was free but I had to weave around a man with an intellectual disability who was washing his hands. His staff was standing, leaning against the wall, watching and waiting.

The man with the intellectual disability did what a lot of people do. He noticed me, my size and my disability do seem to energize the lasers in people eyes. His eyes tracked me to the stall and now he was leaning over to watch me back my chair into place.

I said, "Please don't watch. Give me some privacy."

This is not something I say to disabled men, of any stripe or variety, it's something I say to anyone who presumes the right to watch me enter a toilet stall. It's weird. It's wrong. And it's unwanted. The fellow caught himself, muttered 'sorry' and looked hurt. Forgive me but I didn't care. People learn from situations like this precisely because there is emotion attached to the learning.

The staff however really cared.

Really cared.

He had stood up and stepped over and how he was staring at me with disapproval and displeasure as I was putting my breaks on, which I do just before closing the door.

His eyes called me names.

You could see that he thought I was a total jerk.

I wonder why he left the job of training to me, a stranger. Shouldn't he have noticed the intrusive behaviour and prompted the fellow to use appropriate boundaries? What if I had been a child going into the toilet under the unblinking stare of this man, do you think his father would feel comfortable with that? Come on, people are hired to do a job, so do your freaking job.

You don't watch people as they go into bathroom stalls.

You being everyone, not just people with intellectual disabilities.

So.

Your job, as a direct support professional, isn't to stand by as a casual observer to intrusive or invasive behaviour. Your job isn't to minimize the actions of the person you serve because they have a disability. Your job is to provide support.

Provide.

Support.

So do that please.

Monday, June 11, 2018

The Next Car Over

I saw them as I rolled down the cut curb into the parking lot. The rain had stopped and lots of people were taking the opportunity to get from the mall to their cars in the brief dry spell. They were full of energy, banging into each other with easy, friendly, affection - although they'd never call it that. The oldest might have been 19 and the youngest about 16. The five of them talked and laughed and looked like a great bunch of boys.

Then as I neared the car, I saw them all piling into the car next to us, also in a disabled parking spot. One of them noticed me, said something to the others, which sent them all into a giggling fit. Like they'd been caught by a teacher doing something unspeakable to a frog. My mouth dried up. I was angry. There were, and had been, lots of parking spots that were close, they didn't need to take up a disabled spot.

I pulled up beside their car, and said nothing.

Because I was afraid to.

I am disabled.

I may have a voice.

I may have something that needs to be said.

But I am also vulnerable.

And, so, silence.

They backed up, still laughing, one of them pointing at me, reduced to gestures because he was laughing so hard. Ha. Ha. Ha. Caught by a cripple in crippled parking. They thought it funny and they knew me to be an impotent force. They knew that their youth, and strength and mobility, which I had not seen as threatening, now was. They knew I would be silent. They knew that I would simply watch them drive away.

Which I did.

My life with a disability is one that I find precious - it's way better than the death that people claim they'd prefer - and it's given me the opportunity to learn and grow and confront parts of myself. I life a free life, I'm miles from home. I'm working tomorrow. I have purpose.

But.

There are times when I find myself frustrated, not by my cowardice, but by my need to be so. I find myself holding back when I know my voice is needed. They needed to hear me. They needed to know what it meant to rob people of access and opportunity. The needed to learn from me.

And they didn't.

There's a tragedy there.

And a humiliation.

Sunday, June 10, 2018

Bright light, Dark Room: Let's Have a Discussion

Yesterday we went to see a movie, 'A Quiet Place' at a theatre near the hotel we are staying in. The place was old and ill designed. The wheelchair space at the very back, at great distance from a small screen, had no chairs for anyone without their own. The one wheelchair space at the front, we discovered when looking for a way to sit together, was beside a seat that had been ripped apart. The long push back up to the isolation area was steep and hard, I made it almost to the top but needed help for the last couple of feet.

So I sat beside Joe and we decided to just cope. Just before the movie started a mother and three children came into take their seats at the end of the row in front of where Joe was sitting. There were, mom, daughter, son, daughter arranged in their seats. They were surprisingly noisy just settling during the start of a movie that uses silence as a tool for story telling. But they did come to complete silence about 5 minutes in.

But.

There was a lot of movement. The son kept getting up and going to the seat at the end of Joe's row and directly behind his mother. Then, when things got scary, which came early and often, he'd scoot back to his seat between his sisters. Finally he settled for a long time at the end of Joe's row. He had a cell phone out, looking intently at the screen completely still, the stillness interspersed with rocking.

I hate the bright light of a cell phone in a theatre. I thought about saying something because I always do, 100% of the time, but I didn't. It seemed to me that he had some kind of cognitive difference and was using strategies to be able to stay in the theatre, watch the movie with his family, and enjoy all that comes with that. It was clear he was watching the movie because when the intensity built he'd be back in between his sisters. Every time.

To me the cell phone seemed to be like an assistive device for him to use, phone for him, wheelchair for me. Because of that, because of how it seemed to be used, I felt that I had no right to speak up. He had as much right to see the movie his way as I did mine.

Oddly, when talking to someone about this, I was told that I had lowered my expectation for him based on a perceived disability and that was doing him no favours. He needed, I was told, to learn how to be in public without disturbing others. A behaviour plan would probably help him enormously, they said.

I don't know. I don't think I lowered my expectations, I felt that I altered them. If he copes in a particular way, who am I to say that he can't use that strategy. I fight for MY access to public space, what if his cognitive ramp is the cell phone and a bit of rocking? Isn't accessibility defined differently by different people?

I don't know. But I do know there is strong opinion around this. I'd like to hear what you have to say about this, but please say it kindly ... go ahead, over to you.

Saturday, June 09, 2018

yellow tears

There was just one. I rolled up, tried the door, found it locked, and then I pulled back and began to wait. I knew that the person in the accessible toilet knew I was there because the handle had shook when  I tried it. I counted that 67 people came and went from the toilets as I waited for the one that I could use.

I tried the door again, wanting to signal that it was what it was, urgent. The words were unclear but the yell was not. The second try had annoyed whoever was there. Finally when he came out, he was a tall, thin man in his 30s with no disability at all. Not even an invisible one. In the apology that tumbled out of his mouth he mentioned that the didn't have a disability he just liked the space and he rarely sees someone like me use them. I glared but didn't cry because I had to go so bad, I feared yellow tears.

Then he decides to help me by holding the door. This guy who had a lot of options had taken my only option and stayed in there while 67 other people had been and gone then left. I told him I could do it myself. He insisted. He was going to make up for his behaviour by inflicting me with guilt tinged help.

Not this time.

I told him I'd piss myself before I took his help.

"I didn't realize ..."

"Yes you did and you did it anyway now get out of my way."

Flustered, he left.

And I went in and peed.

That, in a nutshell, was my day.

Friday, June 08, 2018

I Diversify

I avoided that corner of the store completely. I'd seen it of course, it was hard not to with them all either raised high or crouching over there, many looking ready to pounce. They weren't going to get me, that was for damned sure. But as we went round the store with a clerk helping us with an enthusiasm that was a little off putting, we got closer and closer.

I'd point to this one or that and the clerk would snap out the tape measure and measure the to see if it topped 21 or if it came in under. He had an odd way of taking the measurement, he'd get the tape in place and then bend from the waist down to see the result, he looked as if he'd been cut in half each time, why he didn't crouch I don't know.

Finally, it was time.

We looked at a model that was crouched and the controls were handed to me. I raised and lowered, raised and lowered, set on crouch and then tried another. Finally I came to one that I thought looked comfortable and maybe, just maybe, would work for me. I had come in determined not to get one. I had classified them as for 'other' disabled people, not for me. But, I might have, I thought, joined another demographic.

Joe and I talked about it and the clerk left us alone. I got out of my chair, sat down in the lazyboy recliner with the electric assist lift function and then let it get me up enough that I could stand easily. I don't stand up well, I often lose my balance, I often struggle, even on my chair on blocks at home. You read that right, chair on blocks, don't judge me.

This new chair was a comfortable sit, it comes in under the 21 inch level I need for getting up, but with the push of a button it lifts me there, and, okay, it reclines nicely. 

I didn't want to buy one.

But, I'm going to.

When we get back from this trip we are getting rid of my old chair, the blocks it sits on, and install this mechanized beauty. 

Yep, I have a brand new identity.

Here's to diversifying, yet again.

Thursday, June 07, 2018

No Explanation

There is no explaining how it feels

To look forward to an event

An accessible event

And arrive to find

No access, no welcome

Then

It just becoming

A quiet drive home.

Then

A dawning realization

That it continues

Without me.

Then

How unnecessary I am.

How is it

that

isolation is so

incredibly well ramped

and

disconnectedness

completely

and

fully

accessible.

Wednesday, June 06, 2018

Tires

The tires on my new wheelchair are air filled. This is new for me. My old reliable chair, which I'm sitting in now as I type, had solid rubber tires. I was wary of the new tires because I could just picture what a flat would mean, the trouble it would cause, and the idea makes me sweaty with anxiety. Nonetheless, this is my new reality. The chair is, increasingly, wonderful to push and ride in as I adjust to it, but I now need to adjust to the tires.

I noticed that I would probably need to put air in soon. We headed over to buy a bicycle pump and were greeted by a young man who simply had no idea about pumps for either bikes or chairs but did know who to ask. Another fellow came and I explained that I needed a portable pump because we travel a lot and I needed to be able to pump up the tires on my chair.

It was so weird because, firstly, the guy had trouble talking to me and looked mostly at Joe (well, that's not so weird) but secondly, he couldn't bring himself to mention my chair. He kept talking about bikes and pumping bike tires, talked about being an avid bicycler himself and the situations he'd gotten into with his bike. I wanted to be sure, absolutely sure, that this pump would fit my chair wheels. I was told they would by the folks I bought it from but I wanted the store guy to confirm.

He heard my question and said that the pump would work with any bike tires, I told him that I wasn't sitting on a bike I was sitting in a chair and I wanted to know if I'd been properly advised about the tires. Nope, couldn't do it, it was back to bikes and bike tires and the whole shebang.

We bought it.

I know that we should have gone elsewhere but we've been traveling a lot, and we're feeling a bit old and frail, and we have to fly again in a couple of days, so we just bought it.

Sometimes we don't feel like protesting.

Sometimes we just put up with less than the best because we don't have time to search for the even barely decent let alone the best.

We have a pump.

And are working up the courage to try it.

On my bike wheelchair.

Tuesday, June 05, 2018

Yeah, This Happened

Yesterday I went to a new grocery store feeling a sense of 'so there!' to the place I've shopped since moving to Newmarket. My former store was one I liked, and is closer, but as much as I tried I couldn't get them to take even the most minimal action to make the store accessible to me. Most of the requests were simple, so simple it was inexplicable to me that I had to even ask. All of the employees, from store clerks to managers said they 'understood' but understanding never translated to change.

Then.

One day.

I was done.

So I rolled into a different place prepared to give them a shot. Joe and I agreed that if there were issues with accessibility, we'd give them a chance to fix it and see how they did, we wouldn't react at first shot. And, predictably, there were issues. Primarily the issue was the only lane that had an accessibility symbol was the one with limited items. No way Joe and I can eat for a week on 8 items or less.

I asked to speak to a manager and discussed my need to be able to shop and pay and be able to do so without impeding others or getting special dispensation to use the limited item aisle. He told me that there was another accessible aisle and pointed it out to me. I asked why there wasn't a symbol there letting people know. I said that it was great that he told me but what about other disabled shoppers, should they have to ask?

He said that he understood and would do something.

It might have been rude but I told him that people always say they'll do something and then don't, was he one of those or could I could on change.

He said he'd do it.

Okay, then, I thought, we'll see.

We got in the line up at the accessible till and waited. Just before we started unloading he was back, he'd discovered that they'd actually had an attachable symbol and in a couple of seconds and a couple of clicks, it was install.

Just.

Like.

That.

I am now a loyal customer.

Monday, June 04, 2018

Personal / Political: Feeling a Little Lost

I've been taking our travels, and all the time I have in my new wheelchair, as an opportunity to practice my outdoor pushing. This means, for example, pushing from the parking spot to the hotel rather than being dropped off at the front door. It also means seeing a funky looking coffee shop across the street and instead of driving there, rolling over and back.

I admire wheelchair users who push themselves outside. I know the skill and the strength it takes. Sidewalks all being built angled, driveways at even steeper angles, pushing one wheel to propel and holding the other wheel so the chair doesn't do what gravity really wants it to do and plummet down the slope. I see other wheelchair users doing this such that it doesn't look like work. When I do it, it looks like work.

But I've set a goal for myself of pushing further and further outside. When in Vancouver, I'd like to do the sea wall. Joe and I used to walk there, and we always had the best conversations when we did so. I really want to do that again. I had thought it lost to me, but I'm figuring the wheelchair and stronger arms and more skill may have made that thought premature. So, I'm aiming to do that later this year.

I'm also fighting with myself over pledging to do a 5k outdoor marathon. I'm told the track is wheelchair friendly, I'm told that, for a 5k, it's a gentle one. I'm almost there with the decision but I want to wait until we're travelling a little less so Joe and I can go there and give it a shot, do a kilometer or two.

Someone asked me, another wheelchair user actually, what I was trying to prove by doing these things. I hadn't thought about these goals as political, only personal. I hadn't thought that these goals might be seen as critical of others with disabilities. Not at all. And I confess, I still can't see the issue. My goals are my goals and they are very personal and specific to me. I don't feel that I'm trying to prove anything to anyone but myself.

I've always been sedentary. Always. As a child. As a teen. As an adult. Disability or no, my tendency was to avoid physical activity. For some reason in the last couple of years that's changed and I enjoy feeling my body work hard. Part of this is because I figured that if I wanted to continue to travel and lecture, and I do, I had to increase my physical strength. I had to take the strain off of Joe and take it on myself - he has enough other stuff to carry and deal with. But mostly, I started, and enjoyed, the way working physically took my mind off my work and my worries.

So, now I'm wondering if I should even be writing about my adventures as a physical being pushing my own chair. I know my intent in talking about this is to document, for myself, and for those interested, my life as a disabled man - but does my privilege as a man who can push his own chair make me unable to see what my own posts are saying.

I don't know.

Sunday, June 03, 2018

Compassion Failure

Compassion.

Real Compassion.

Is hard work.

We were on the plane ready to fly home. It was the first flight in the morning and we'd gotten up very early to ensure we got there with time enough for things to go wrong. That is our strategy, it works for us. But by the time we got boarded and the plane was ready to take off it was only 7:30 and we'd been up for hours. But we pulled away and we relaxed knowing that we'd be home soon.

The plane got in position for take off, which took some time because there was a line up of planes flying out, and we heard the captain come on the PA. Oh. No. We were told that there was a passenger having 'some medical issues' and we'd have to go back to the terminal. The whole plane, every single passenger, sighed. We were going to be leaving late, connections were going to be missed, the flight just got a little bit more unbearable.

We got to the gate and the passenger disembarked, there was some paperwork to be done, and then, we were ready to pull away from the gate. All of this added about 20 minutes to the flight. The line up and re-positioning for take off was another 15. Then we were in the air headed home. I was sitting there with a little bit of resentment, a little bit of annoyance, a little bit on anger rolling in a solid ball of selfishness in my stomach.

Not once during that time did I ask myself what it must have been like for the passenger to need to return to the gate, to seek immediate medical attention, and to miss the flight entirely. In fact I knew I wasn't asking myself that question because I didn't want to.

I didn't want to do the work of compassion.

I was tired.

On top of that, I kind of felt that my compassion, if I had engaged with it, would have been fruitless. What would the passenger know or care about how I felt about the whole ordeal, for them, for me? Why does it matter that I engage with empathy, that I put caring into operation? Why start up the machinery of compassion when there was no heavy lifting to be done?

It wasn't until I got home, after having told the story of the delayed flight and my annoyance about it to a couple of people, who all got why I was feeling what I was feeling, that I realized that my compassion did have work to do. Firstly, showing compassion in a situation where it isn't needed for another is worthy because it's needed for myself and for my own peace of mind. Secondly, I was modelling for others that the correct response to another's distress is annoyance. 

And it's not.

Ever.

I got it wrong. I'm fully human and alive to the fact that I am more easily moved to judgement than generosity. Yes, I get it wrong. Yes, I got it wrong. Ultimately it does matter to the passenger who got off the plane in medical distress because we both live in the same world, and we all have the ability to directly or indirectly affect each other just by the attitudes we carry.

I hope the passenger who got off is well.

I hope their next flight went smoothly.

I hope they know that the delay they caused, ultimately, did no one any harm at all.

Saturday, June 02, 2018

no status

Several times on this trip I discovered that my "no," even firmly said, held no power. This was my first trip, by plane, in my new wheelchair. I'm adapting to the chair, it's quite a different 'push' than my old chair and I use different muscles in my arms and shoulders. This means that I a working a little harder, on inclines, as I develop the new stroke and increase the strength in those muscles. On a flat surface, I use very little strength, the thing flies.

This has meant that people do see me struggle a little bit more when I'm going up hill. Now to me it's really important that I not take help. I HAVE to develop the strength. I HAVE to work at it until I've got it right. I HAVE TO. This is about my body, my future and my mobility. I don't want to passively accept help when I can actively do it myself.

On the way to the gate at the airport yesterday I was asked, by someone coming from behind, if I wanted help as I pushed up and long, carpeted, incline. I said, 'No, thanks,' and suddenly I was grabbed and pushed. I screamed, 'I said NO!' and then watched a really angry person walk away.

That was one of six or seven times that happened over this week away. I'd say no and people would come at me anyway. I'd have to get a little aggressive, and that still wouldn't work. My 'no' had no power. Living in a world without the power of 'no' is scary. When Joe would intervene, which he did several times, and say, 'He's okay,' or 'No he doesn't need help.' THEY WOULD LISTEN.

Joe wanted to always be behind me to protect me from those who assert their 'yes' over my 'no' but I asked him not to. I need to develop those muscles too. I need to be heard.

Why is a 'no' from a disabled person not equal to a 'no' from someone else?

I know that I'm seen as 'unnecessarily brave' .. how do I know that, I've been told that.

I know that I'm seen as 'inspirational' ... I've been told that too.

I know that I'm seen as 'denying the reality of my disability' ... I got a mini lecture as I tried to stop someone from touching me and my chair.

What I'm not seen as is powerful.

What I'm not seen as is capable.

What I'm not seen as is equal.

I teach people with intellectual disabilities to say 'no' to assert themselves. I did that on this trip. But now I'm thinking that maybe I have to revise the training. Maybe I have to be clear that 'no' is just one of many strategies. I do already teach what to do when 'no' doesn't work but they all involve reporting to others in authority.

But if our 'no' doesn't matter, it's violation isn't a crime.

Maybe that's where it all begins.

I have some thinking and some curriculum changes to make.

Thursday, May 31, 2018

Him

We were uncomfortable straight away.

Only minutes after seating ourselves in the restaurant, we started wishing we'd ordered room service. We never go out for dinner, well, maybe not never, but rarely. We are tired at the end of a work day and like to tuck ourselves away from the world. But we'd seen the menu, which had actual choices for vegetarians, and the pub itself was cool. So there we sat.

There were two staff on when we arrived. A man, maybe in his later 40s and a woman in her mid twenties. The man was clearly the person in power, we never found out if he was the supervisor or if he was the kind of guy who just assumed power, then used it, then abused it. He was horrid to her, passive aggressive and critical, making her work life hell.

She was serving us and at one point I asked for some more hot water for my tea. She did this, willingly and brought it back to me, telling me to just ask when I wanted more. He walked by looked in my teapot and made a comment that she hadn't filled it properly and grabbed the tea pot and went and got more water, filling it to the point of being too full. I told him it was now too full and he brushed that away saying that I'd be find with it.

At one point he came behind her as she was working and poked her from behind under the back of her arm pits. She was startled and pulled away. He did it all 'laughing' because he was 'such fun.' Then another staff came on a young man around the age of the young woman. The waiter started 'bantering' with him saying that some other staff in the hotel had started dressing like a 'ho' in order to get his attention, he was clearly flustered and embarrassed but the older waiter didn't stop he went on in this vein about this 'ho' of a woman.

He touched the male waiter too, he came over to him, spread his hand wide and laid it on his shoulder such that it wrapped around the young man's shoulder and his middle finger touched the bare skin of the waiter's neck. He didn't belittle the young man in the same way as he did the young woman, but it was clear he was the Alpha waiter.

We didn't know what to do.

But it was clear that he didn't care that we saw, he expected and anticipated our either indifference or our silence. He was free to prey in public view.

After we left Joe and I were determined to do something.

The following day we made an appointment to speak to the manager. She agreed to meet with us first thing in the morning and we sat down and gave her a full accounting. She looked shocked. But she listened hard. She promised that action would be taken.

We need to ensure that those who abuse others can't count on public silence. It doesn't matter that he's not a movie mogul, it matters that he created a toxic and harassing environment around him.

I am not powerless.

Neither are you.

Monday, May 28, 2018

What Happened and Why

I had the oddest experience the other day. I was in a grocery store and had been unable to find what I was looking for. Joe and I went looking for a staff. We saw a woman off in the distance giving directions to someone else and appeared friendly in doing so. So we approached her, we told her what we were looking for and she stood looking, staring really, at me frozen. Then she started taking us to where we needed to go, she refused to walk beside me, she refused even any verbal chit chat.

I had seen her quite comfortably talking to the person who'd approached her before me, I had seen it, I know I did. I looked at Joe who just shrugged his shoulders, she was really, really, rude.

We got to where we were going and she just pointed at the item and walked away.

This was a woman with both a physical and intellectual disability. This was a member of my community. She had just demonstrated her comfort with interacting with the non disabled before showing me disrespect. In fact, as she walked away, she was stopped by another shopper with whom she chatted and it was obvious they were simply saying hello.

This has happened before, other people with disabilities being uncomfortable with me and my disability. I don't know what it means.

Are they simply, deeply, prejudiced against others with disabilities?

Do they worry that our disability with draw attention to theirs?

Is this bone deep internalized self hatred and ableism?

I don't know, but it kind of hurt. I don't expect to be embraced and given extra special treatment from an employee with a disability but I do expect the same as they give the non disabled.

We got what we wanted and left.

And I'm still trying to figure out what happened and why?

Sunday, May 27, 2018

The Inspire Awards: the complete speech



Below is a transcript of the tape that was made of my speech at the Inspire Awards, given out by Toronto's LGBT community, at the ceremony on May 5th. The beginning and ending are from memory, which is unreliable, the middle is from the portion of my speech that was recorded.

(Joe assists me with getting to the stage area and returns to his seat as I start.)

That lovely man you just saw up here is my husband and next year we will celebrate our 50th anniversary. (applause)

It's wonderful to receive applause now but back then was a different story. Our relationship was vilified. Our love held suspect. We lived our lives in silence carefully moving the the world outside our home.

And then when I stepped into human services I saw what happened when tyranny, when tyranny, weaponized disapproval. Because what happened to people with disabilities regarding their sexuality is simply unconscionable. We used torture as best practice. We took cattle prods and burned their skin, we shot lemon juice into their mouths. I met a little girl of 8 years old, with Down Syndrome, and in order to stop her from masturbating her therapist had said that they should shoot lemon juice in her mouth every time she touched below the waist. She had scars down both sides of her mouth.

People with intellectual disabilities have never been seen as truly human.

People with intellectual disabilities have never been seen as truly adult.

And people with intellectual disabilities have never been seen as capable of loving and of loving other people.

And you know in my work with people with intellectual disabilities, and the journey that we have had, we have seen remarkable progress but we still live in an era where the civil liberties of people with intellectual disabilities are not governed by law, they are governed by boards of directors of agencies and from one mile to another a person with a disability can lose all their civil liberties simply because of the disapproval of others.

When we first began the journey, and I first started speaking out about the rights of people with disabilities to be simply sexual beings, and that they had both genitals and heart, I faces fierce opposition. The books I wrote were burned, I was called a pornographer, I was banned from speaking in Oregon, and received death threats in Canada.

But I'll tell you this. I am different, and I know I am different, I'm fat, I'm gay, I'm disabled, and the experience of difference is a wonderful thing because it gives us a well spring, it gives us a well spring of anger, and it gives us a well spring of hope and it gives us a well spring of justice. And if we use our difference properly we will use our voices well. And we have the responsibility, each one of us, to use the voices that we were given, to discover what difference means to us, to discover what we have faced as human beings and understand that it's not okay. It's not okay for people to live in spaces where they are not safe. It's not okay for people with disabilities to be judged differently because they live and move in the world in different ways. We need to understand that the gay community, the LGBT community, is a very large community, and people with disabilities are members of that community. People with disabilities have got a right to membership, in this community. I so often sit at the intersection of disability and sexuality and watch the parade go by because there is no cut curb.

Thank you for this award and thank you for acknowleging, in giving it to me, that the lives of those of us with disabilities, particularly those with intellectual disabilities, are of importance to you and that the LGBT community will work to confront prejudice and inaccessibility so that all of us can participate and all of us can contribute.

Thank you.

Friday, May 25, 2018

One Minute

Today I will be receiving a lifetime achievement award at the "Inspire" ceremony here in Toronto from the LGBTQQ+ community. It's for my work regarding sexuality, adulthood, and self advocacy with people who have intellectual disabilities. I feel humbled by the award and challenged by the fact that I have one minute to speak after receiving the award.

One minute.

Should I mention the time I was called a pornographer for producing information and materials on sexuality and masturbation by newspapers in Maine?

Or when I was banned from speaking by several organizations in Oregon?

Or when my book on sexuality and adulthood was burned and the ashes sent back to me in the mail?

Or the death threats that resulted from some on air work here in Canada?

Sometimes it's fun to look back and this occasion has me thinking through how upset people were about ideas that I'd present which are now, pretty much, standard practice.

I remember being screamed at by a man who, in an Ethics of Touch training insisted that I was perverse because I was sexualizing the fact that he allowed and encouraged the women in his group home to sit on his lap and rub their back to calm them down.

Or the woman who was so angry about my comment that staff are not friends that spittle flew in my face.

Or the group that accosted me at break time about my sexuality presentation which included a section on the rights of LGBTQQ+ people with disabilities to respectful support, I can still here the "God kills fags and PRAISE HIM for it" ringing in the ear. I still remember the organizer bringing security into the room for the rest of the day.

But as I thought about what I could say in one minute, I decided that this stroll down memory lane isn't really what I should say. I think I'm going to ...

(to be continued)

Thursday, May 24, 2018

This Is You, Man, You

Okay, this is a subject I've written about before but I'm going to take a different turn in the telling. We arrived at a hotel with a booking guaranteeing an accessible room and there wasn't one. The clerk, handed me a key to a room, not telling me that it wasn't accessible, even though I'd asked. I was suspicious because he hadn't answered my question so I asked again and was told that it wasn't an accessible room. It all got worked out but ... while it was working out I sat there wondering. If you forget the reservation, the guarantee, all that, how could he do that to another person. Human to human just send me to a room I couldn't use. What did he think was going to happen. So, when I had a key to an accessible room, I don't know what magic was worked to find me one, I said to him:

"Can I ask you a question, person to person, human to human?"

"Yes."

"How could you hand me keys to a room I couldn't use and keep silent about the fact that it didn't meet my needs for accessibility? How could you do that to another person?"

"I didn't mean to dehumanize you."

"You didn't dehumanize me, you dehumanized you. Aren't you worried about that?"

"I didn't have the room you requested."

"No, I'm not talking about that, I wonder if it worries you that you could do that to another person?"

"I'm sorry, sir."

There was no oomph in his apology and I don't believe he meant it much.

But, for the first time I really wondered about and worried about the person and the people who can so easily do that. What makes it possible for someone to simply dismiss another person as being real.?

I don't know.

As I rolled to the elevator, he started to explain again about the room and I said, "No, man, you need to get this, this is about you, man, you."

And I meant that, and believe it or not I thought and think that I was performing an act of kindness. I don't know if you'll all agree or not.

Wednesday, May 23, 2018

Does It Matter?

Does it matter that I have a disability?

Yes.

It does.

People keep saying that they don't think of me as disabled.

Even though I am.

People keep saying that they don't see me that way.

Even though I am, quite visibly, disabled.

People keep saying that I shouldn't speak of myself that way.

Even though I am sitting in my chair while we talk.

But.

People don't understand why I bristle at the idea that they are complimenting me.

Even though it's clearly offensive to tell me I'm not what I am.

People don't understand why I state that I am proud of my status as a disabled person.

Even though they understand pride in virtually every other person.

People don't understand why the conversation turns sour when they are being so sweet.

Even though it's not 'sweet' to kill off all the words I use to speak of my self.

But.

I need those words, the words they want to eliminate, expunge, euthanize, to make my experience real. I need those words to explain my place in the world. I need those words to reify my history and my present and my future.

I need to speak those words.

I need those words to be heard.

I need those words fully scrubbed. Bright and clean, free from shame.

I am disabled.

Without contradiction.

I need that word to describe who I am.

I want to exist in language.

It is not a gift to eliminate me.

Word by word.

Taking my power and my experience and my history from me.

I am disabled.

Whether you see it or not.

Whether you think of it or not.

Whether you speak of it or not.

I am real. My experience is real. My community's history is real.

Real.

Without need for your permission.


Tuesday, May 22, 2018

And Then I Didn't

While Joe was getting his hair cut I was wandering around the store. He takes much longer than I do and I fill that time by browsing. I was rushing back to the hair cutting place when I had to come to a stop because there were two people who were blocking the pathway. The aisle had been narrowed by a display but there was plenty of room for them to just step a little to the side to let me pass.

They saw me but didn't move. I asked them, politely, if I could get by. They looked at me like I was shit on their shoes and carried on chatting indicating that this space belonged to them, not to me or those like me. They were those that the whole world was in the realm of 'mine not yours.'

I took the time to look at them, recognizing that books can't be judged by the character of the person carrying them, and saw two studiously 'cool' people. Great hair cuts, hers a deep burgundy and this tinged with a cobalt blue were star attractions but their clothes were funky in an expensive kind of way. Their who presentation screamed, "We're kooky and we're kool and we're the kids to know!"  They'd worked hard at their look.

Tick Tock

I needed to get by, there was no other accessible way to the barber's so I asked again if they could just make room for me to get by. Again they looked down on me, both literally and figuratively. Then, I spoke, having had enough time to think, "You know what cooler than you? Kindness. You dress well but you're just assholes in costume." And then I started to push and they were require to move.

They called me a name or two.

I said, over my shoulder, "Thanks for proving my point, bullies never really do grow up do they."

The bully comment hit, probably harder than I'd intended. They look mortified and angry and fled the scene of the 'mine.' I felt a twinge of guilt, and then suddenly, didn't any more. I tire of the burden of caring for the feelings of those who care nothing for mine.

Sunday, May 20, 2018

Understanding and Accountability

I keep getting told that it's "not prejudice."

I keep getting that patient voice explaining to me that prejudice as a motivating factor is just in my mind.

I keep having explained to me that, essentially, there is no such thing as prejudice against people with disabilities.

After shopping for groceries in my local store, I once again found that the only two aisles that are wheelchair accessible have signs up stating that they take customers with less than 12 items. I have had this discussion with the store managers and supervisors several times. They all claim to understand.

This is crucial.

They all claim to understand.

They all claim to see my point.

This is equally crucial ...

... they all claim that they will do something about it.

So, after being away for a couple of weeks we went grocery shopping yesterday. It was nice to do something so entirely normal and homey. But when we went to pay for the groceries, we encountered the same problem. We had a bunch of groceries, WAY more than 12 items and the two accessible cashiers were designated for those with very few items. We went to one of them anyway and were immediately shooed away by the cashier.

I started making some noise asking where the hell I was supposed to pay. One of the senior staff came over quickly to take down the 12 item sign so we could go through. And there's where the clash occurred. We've spoken before, she and I, several times. I was fed up and tired. I challenged her and the store about blatant prejudice against disabled people as welcome customers.

"I'm sorry you feel that way," she said before beginning to explain that this was my perception but not fact. She was snippy and curt.

Not fact.

No accessible lane for wheelchair users to pay for purchases.

No sense of respect for my frustration.

AND

They knew.

I've talked to them before.

And they claim to understand.

So if they understand they are purposely ignoring the situation and have committed to a path of doing nothing and making no change.

EVEN THOUGH, BY THEIR OWN WORDS THEY UNDERSTAND.

Well that's it for me.

Joe readily agrees.

We are shopping somewhere else.

I had thought that I could bring about change.

I can't.

Because the understand but don't.

And that's sheer bigotry and prejudice.

Saturday, May 19, 2018

Where He Is Free

Home.

Our flight home. Our waiting rental car. All went as they were supposed to. The traffic was heavy because of the long weekend but we managed to survive it all and arrive home. We came in and immediately felt embraced. We knew that this space was ours and that it was tailored to our taste.

As I was rolling through the door I remembered speaking to a man with a similar disability to the one I have. I remember him speaking of living in a nursing home because of a lack of access to an accessible living space and the supports that he needed to live freely. He was a few years younger than me. He had about him a resignation to his life that came from exhaustion from fighting for so many years, he wasn't resigned from the start he told me but his dream of a home, a place of his own, had slowly slipped from him.

He said that he once hated where he lived, but that had led to a deep bitterness which took away all joy. "This," he said, putting his hand on his chest, over his heart, "will always be free even if I never am." I got teary at that point and he made an apology that I brushed away. I told him I needed to be reminded.

That people still yearn to be free.

That people still wait for a just life and a fair shot.

That people live in captivity jailed, not by bars, but by indifference.

I come into my home, from a lengthy trip on the road, of two weeks, and I feel a warmth in my gut at coming through the door.

Two weeks.

Just two weeks.

And he, for years and years, is still away from his home - the one he has in his mind.

We are so not done yet.

Not. Nearly. Done.

Friday, May 18, 2018

Travel - Disability - Making it Work

Okay, we fly home tomorrow. As you read this we will be on a plane flying towards Canada. One we land it's about an hours drive home, depending on traffic, and then we sail in to the long weekend. We're tired from the trip but as always grateful to have had the experiences we've had. We found that our past experiences of travelling with the wheelchair led to an error free experience (but we haven't flown yet) in terms of the hotels and venues where we stayed and worked. Planning works.

Being disabled makes things more complex, not more difficult, but more complex. It takes much more thought and much more attention to detail and doing a lot more double checking. This time every hotel we arrived at had an accessible room waiting, every place we went to see, visit or shop at was barrier free. This meant that we had to stay at particular hotels and avoid some touristy stops ... but we used the world that we could both easily move around in.

All of this made the disability become almost irrelevant, it was still there but it didn't mean what it can mean in places and spaces that are determinedly inaccessible. My disability, like my personality, changes in relationship to the environment I'm in and the welcome I get. I have enough, just enough, control to manage that in certain ways.

I choose an airline that I find welcoming to me as a disabled traveler.

I choose a hotel brand that offers specific ADA assistance.

I use Google to help me determine architectural welcome.

This doesn't always work, but this trip, it did. I was able to push myself around everywhere we went, I was able to access all that I wanted to access. Joe and I were able to focus on being together and enjoying the time we had to enjoy. It was a relief.

I know I am cursing our trip tomorrow by writing this now, but I wanted to just say, as we are in our last hotel of 8 that it has been smooth sailing.

So we go into tomorrow and the travel home hopefully. We go into the rest of the lecture season determined to be just as careful and make our experience of travel be one that allows us to enjoy the work, the people and our surroundings.

Tune in tomorrow to see if it ends as it began.

Wednesday, May 16, 2018

23 Times

"Hey!" said a passerby with disgust, "Don't do that!! It's disgusting."

Now I don't happen to believe that this was said to the man with an intellectual disability because of his disability, I firmly believe it was because of his behaviour. He had been walking alongside his staff in a mall when he leaded over and spat a huge gob onto the floor. The fellow who protested was clearly upset about this. I, took found it, to say the least, off putting.

The staff said, "It's his right."

The passerby said with surprise mixed with anger, "His right?"

The staff nodded in as haughty a manner as possible. I'm sure she was thinking that she was advocating with the nasty public.

Now, I don't know about you but I don't think we all have 'the right' to spit on floors in stores, restaurants and malls. And if, by chance we do, we shouldn't freaking do it anyway.

I have been fully engaged in the fight for people with disabilities to have full adult rights, this is not what I envisioned. Not at all. In fact, I think this is neglectful of his right to learn behaviours that are not gut-wrenchingly awful. Spitting on the floor in a mall or anywhere like that really bothers me, when anyone does it. But then in all of my 65 years, I've not seen someone do it before so there must be some unwritten code guiding us all to gob where gobbing is acceptable. It seems simple.

Rights should not be trivialized.

Rights should not be used as an excuse to provide service that is essentially neglectful.

The look on the faces of everyone around was not, um, positive. The look on the face of the man who'd spat on the floor was triumphant, he knew what he did was wrong and he's got his staff as his pass-key to do whatever the hell he wants.

Rights should not be trivialized.

I'd like that staff to write that on the blackboard 23 times.


Tuesday, May 15, 2018

Statuary

Ruby is a big fan of the television show called, I think, "Charmed." While we were here in Los Angeles she asked if we could go and get a picture of the house from the show. On Sunday, after prompting from Ruby, we checked and found it wasn't too long of a drive from our hotel. We ended up driving on both Sunset Boulevard and Ventura Highway along the way.

The house was easy to spot, there were tourists, like us, outside the house taking photos, all of them, by their level of excitement, real fans of the show. We know nothing of the series but appreciated the fun everyone was having and we were enjoying fulfilling a desperate request which told us we HAD to see the house. It was easier for me to take the photo from the car, rather than get out, because of how the house was situated on a hill, the shots were easy to take.

We were the last there when Joe got into the car to sit with me and check the photos. Another car pulled up and a young gay couple got out and came over to the house. They were young, clearly in love, and having a wonderful time. They were having difficulty getting into a position where they could both be in a selfie shot. I suggested to Joe he hop out and offer to take the photo.

He did and they immediately handed over the camera to him. Then they went and stood by the wall that came from the end of the lawn to the sidewalk, They stood close, but did not touch. Inside my head I was screaming, "Put your arms around each other!!" But they didn't. They were happy with the photo though and thank Joe and me, when they noticed me in the car.

My heart broke just a little bit.

Joe and I have pictures of ourselves from when we were that age. We stand beside each other looking like accidental friends, looking like Joe would walk off to the left and me to the right, looking like we were statuary without hearts that beat quickly in each other's presence. I hate those pictures. I don't look at them, ever. I can't bear them.

Because they aren't pictures of us, they are pictures of fear, and of self preservation and of deep, deep caution. These two young men stood like that. Close to each other, but not touching, not playful, not young and in love. Statuary. And I understand their caution, I understand their wariness.

I am constantly told that things are better now for gay people.

And maybe they are.

But maybe they aren't.

Monday, May 14, 2018

A Mother's Day Gift

Okay Google suggested a mall for us to go to on Sunday for a bit of a stroll. The weather here has been grey and drizzling for most of the weekend, clearing up yesterday afternoon in time to let us know that the work week would be beautiful. We arrived, parked and headed in. The place was packed. After a bit of pushing up and down long ramps that connected the various parts of the mall we decided to go for lunch.

The food court was packed. In fact we only got seats because a young family, seeing me looking around, got up and gave us their table. I knew they were doing this for me, a nice gesture to the man int he wheelchair, but sometimes I'll take the advantage. We tucked into the table then tucked into our meals and chatted about the day.

When we were done the place was still hopping, lots of mothers with their kids, lots of laughing, it was a nice atmosphere. Joe got up to put our tray away and appeared beside me was a mother and her daughter, who may have been 14, and whose shyness was clearly evident. They were carrying trays and I was about to offer the table when mom's finger shot out shushing me. Mother's probably never lose that skill.

I waited for a second when her daughter gathered up her courage and said to me, "Are you finished with the table," it sounded practiced but it also sounded like a voice that was growing right along with her. I told her that the table would be free and yes of course they could have it. Her face burst into a big smile and said thank you.

I don't think that she was smiling as much because of the table itself but that she had managed to push through her shyness and ask for it. I saw mom watching her with incredible pride.

Who knows what the back story is and maybe it matters less than the fact that this mom, right now, is teaching her daughter to speak up, to speak out, to use her voice. I glanced back at them and I saw mom with her hand over her daughters and leaned in, speaking to her. I don't know what she was saying but I'm guessing 'proud' was one of the words.

Sunday, May 13, 2018

Mothers

I know a mother who kept her baby girl. Everyone told her to 'put her with her own kind' ... her response was always the same, 'but that's where she already is.' She spent her life fighting for her daughter's right to adulthood and then she had to, with great difficulty, let her child go into that adulthood. She watched her make good decision and bad ones too. But she knew that in order to gain her daughter's trust she had to give hers first.

I know a mother who lost her husband when she refused to let him throw her boy out into the streets. She believed that her child was sinful, that his gay nature was a punishment, that the heart he loved with was defective. But she believed even more that a mother loves her child, that a mother doesn't throw a 16 year old boy out into the street. She never reconciled with her husband and due to his pressure, she was expelled from her church. She attended her son's wedding, the only one of the family that did so.

I know a mother who adopted a child with a serious illness. She was warned about the emotional cost of loving a child that will die early in childhood, she was warned about getting too involved, she was warned away from the child and the commitment and coming hurt. She simply said, 'a baby needs to be loved, needs to have a home, I am prepared to live and love until there is loss.' Her baby lived years and years past expectations.

I know a mother who was brought up in an abusive home. I know the years she put into therapy, her battle against the rages that would over take her, the violence of her temper that would take away her sense of proportion. I know what a big decision it was for her to have a child. She worried that she would do what was done to her, she worried that she would visit terror on the child. Every day she fought for control, every day. Her daughter remarks, now that she is a mother herself, that she doesn't know how her mother brought her up without ever once raising her voice.


Happy Mother's Day

Friday, May 11, 2018

4000

On Monday October 9th, 2006, this blog made it's first appearance. It was named 'Chewing the Fat' at the time because I thought it funny and because I hoped it would, assure people that I knew who I was, what I looked like and that I was good with saying it out loud. Over time I came to dislike the name and changed it, with a fair bit of protest, to 'Rolling Around in My Head' because that suited me. I never anticipated being at blogging for this long and, of course, I grew and changed and along came the next name, 'Of Battered Aspect,' a name that I'm still fond of even though few others are ... but then, its my blog.

Why all this reminisce?

This is my 4000th published blog. There are nine blogs that were either written to be published in a later that never came or that I took down because I decided that I no longer wanted them to be associated with me.

I've thought a bit about what to write for this blog and I simply couldn't decide.

It feels momentous to me but, it's just a blog.

It feels a bit pompous to be celebrating the thinnest of accomplishments.

This blog has served as a personal diary, as a record of my journey as a disabled, gay, fat, man. It has also given me a forum to bring forward issues that trouble me or excite me or pique my interest.

But most of all, it's given me connection to an amazing group of readers. I enjoy meeting those who read my blog and chatting with them about their reaction to what I think and what I choose to write about. Those of you who have introduced yourselves to me are a fine bunch, those who I know from comments are equally fine. You have challenged me, told me I'm wrong and invested this blog with life.

So here we all are, years later, 4000 posts later.

I thank you for your time and your attention and your thoughts. Thanks for pushing me to grow. Thanks for being here today to read this.

4000 posts.

Wow. And wow, indeed.


Thursday, May 10, 2018

What I Did And What He Said

I was getting into the car when I noticed, as isn't uncommon, someone standing and watching me do this. I find this really intrusive and even though I am in a public space, an invasion of my privacy. So, I said to her, "Excuse me, please don't stare at me, I don't like being watched," she looked a little startled at my words and then said, "Sorry," and turned away and continued on.

A shop keeper, standing at the door of his shop, watched all this, once I was seated in the car he strode over and informed me that the woman I had spoken to had a mental illness and that maybe I need to be more understanding. He felt that I should have known and should have made an exception, "How do you think she feels?" he asked.

"Fine," I said.

We then talked and I pointed out that I made the same request to her as I make to anyone else, I was polite, saving annoyance for those who don't hear me the first time, and she quickly responded. She responded appropriately, she said that she was sorry and moved along.

He couldn't get over the fact that she had a mental illness and came back to that as a reason I should have expected less from her and offered 'might have been' scenarios that she might have been triggered to become violent ... that she might have been really upset and hiding it ... that she might have been offended, might have felt ridiculted.

I suggested that all we had was what happened, I asked and she understood and moved along like 99 percent of people do.

When I wasn't budging and when I was refusing his advice to 'expect less' as an act of kindness, I just told him that I thought his lack of expectations of her as an adult person is part of the problem she faces. The tyranny of low expectations rears its head again.

She had responded to a normal human interaction with more grace than many do and yet people expect so little of her. I worry that she sink under the weight of their pity into the pit that expectations abandon has put in her past.

Wednesday, May 09, 2018

What is This?

Photo description: Two piles, one of gravel, one of dirt. The are in front of a barren piece of land.
So, go ahead and guess. What is this picture of? Clearly something's going to be done here, the piles are the ingredients for some kind of construction.

Just off to the side of this is a small children's play and learn area. I had arrived early to work and done a lap of the parking lot and then pulled over to the play area drawn by a beautiful apple tree in full bud. I looked in to the kids area and it looked like it was well loved and constantly in use. I couldn't go in to that area because the ground was rough and the pathways narrow. But I enjoyed what I could see from where I was sitting.

A few moments later we were joined by the owner of the building this was all attached to, she had come to let us in. We talked about the play area and she mentioned that these two piles of dirt were going to be used to expand the area and make it accessible to wheelchair users. She said it in a natural way, not in a way that expected great heaping amounts of gratitude for the venture. It was just a fact, it wasn't accessible and now it will be.

I took the picture because I often speak about intentional architectural exclusion, people can't know that something is inaccessible, ignorance is used as an excuse for metaphorically hanging a sign on the door: No Cripples Allowed. Here, I find intentional architectural inclusion. It matters that what was inaccessible becomes accessible, it matters that those who can, do and those who won't are outvoted.

So, that picture - it's accessibility ... it's the future of welcome.

Tuesday, May 08, 2018

NEVER EVER

I rarely shock myself. I do occasionally surprise myself, mostly by what comes out my mouth unbidden, but shock that's rare. Yesterday I did something so uncharacteristic that it even shocked, and maybe worried, Joe. I could see him reeling as he helped me.

We got to our hotel in Crescent City in the very early afternoon. We checked in and before we went to the room we went over to a small Mexican restaurant that had picnic tables set up outside. No one was sitting there because apparently, its cold out. To a Canadian it's shorts and tee weather. But we got there and discovered that the restaurant itself was accessible so we both went in and ordered. I had two soft tacos and Joe had a super huge burrito.

As is my custom, I spilled food everywhere. My shirt had so many beans on it that I was sure that we'd wake in the night to hear it farting. But I didn't care, the food was good, it was messy, juice ran down my arms, I was in food heaven. We finished up and wiped up and headed back to the hotel. I decided that I wanted to take Joe out for a beer and we stopped at the restaurant that's attached to the hotel. It didn't open until 4.

So we got to the car and I knew that if I went into the room, I wouldn't come out again and I didn't want to sit in the room when it was so sunny out. We had passed another restaurant on our way back to the hotel which was open, which served both tea and beer so I suggested we go there.

The only thing that gave me pause was that my shirt had food broaches right down my belly to my pants.  I managed to chisel it off my pants but my shirt was a lost cause. I noticed then that there wasn't anyone around, that there was a space I could tuck into, so I asked Joe to get me a clean shirt out of the luggage in the trunk of the car. He got in and started to drive and I waved him down, he said that he was taking the car to the parking by the room and I said that I just wanted the shirt now and I'd change here.

"Outside?" he asked his face freezing in shock.

I never, ever, ever, ever, take my shirt off in public. NEVER EVER. But I was feeling good and powerful, I'm pushing myself everywhere and my physical strength has diminished my sense of vulnerability and, I realized with a shock, I didn't care if someone was watching, or taking photos for the Internet or whatever. I just didn't want to go to the room. I knew myself to well. That would end our day.

So Joe handed me a clean shirt, I took off the old one and felt fresh air on my skin for the first time in 57 years. Fifty Seven. I actually remember the last time I took my shirt off outside, I remember what happened, and I remember deciding to never do it again. And I hadn't.

Until yesterday.

And the air felt good. Cool. Clean. Fresh.

But not caring any more felt much, much, better than even that.

Monday, May 07, 2018

About Without

Living dangerously, we had tea for breakfast. We are both men of the age where black pants are the only sensible solution -- they say that the body is a temple, so as with all buildings the plumbing gets a little rusty -- and typically we never have tea with breakfast when we have a long drive. But we were both hankering for a hot drink in the wee early morning as we drove north on US 101.

And we were punished.

Our first of several stops was at a small local grocery market. Joe ran in to see if they had an accessible loo and they did so he came back and began loading the wheelchair out of the car. All of his bustle was noticed by two men who were standing almost directly in front of the doors to the store. They were both chatting with each other but one of the men noticed me, my size and my chair. He took a step aside to get a better view, clearly the curtain had gone up and he was set to be entertained.

I hate being watched get out of a car, I find the stares intrusive and demeaning. Joe had finished setting the chair up beside my door. I opened the door and the sound caught the other man's attention. He looked over at the scene then back at the fellow he was chatting with.

Then he did something remarkable.

He stepped into place blocking the stare that had been laser focused on me. I had been about to ask Joe to do the same thing but I didn't have to. I hurried out of the car and got into the chair.

In complete privacy.

It was wonderful.

That guy, the one who moved and blocked the stare, gave me a gift that I really value. He acted in a way that told me that he understood the situation, understood my right to be about without.

Joe and I talked about this over lunch. Who was that guy and how did he know. Did he have people with disabilities in his life? Was he just naturally aware? How did he come to be? Further, and this is the bigger question, where did he get the courage to act on what he saw.

He didn't just notice.

He took action.

To assist a stranger.

I am always so surprised when something like this happens, maybe because it doesn't happen often. Maybe because I no longer believe that I will ever be really safe in public.

My right to be about without - I experienced that for a few seconds in a parking lot at a store on US 101.

I want more.

Sunday, May 06, 2018

The Chair at the Door

There are three things I do when travelling by air to make the experience less frightening. To be clear, I am not at all afraid of flying, I don't love it, but it doesn't scare me. (Don't you love the part of the safety video where they say, "By now you should be comfortably seated in your seat ..." is anyone actually comfortable, anyone at all?)

What scares me is giving up my wheelchair to others who are tasked with getting it safely back to me at the end of the flight. What also scares me, as it's happened twice, is other passengers stealing my chair from the door of the plane as it waits for me. So, I've come up with strategies to deal with my anxieties.

1) I speak to the purser on board and ask him to notice my chair and to keep an eye out for anyone other than myself taking it away. I explain why I'm asking. I wait for their shock to settle and then they typically agree right away.

2) I get on the plane and Joe tags the chair and sets it aside and speaks to those tasked with loading it.

3) Just a few minutes before the door closes, as things settle, I ask a flight attendant to check with the purser that the chair actually has been loaded.

Thusly assured, I can relax and enjoy my 'comfortable seat.'

When I hit step three on the flight out west, the flight attendant looked at me, annoyed, and said, "Don't worry, it's probably been loaded."

She said "probably" to a wheelchair user about his chair.

"Probably."

Shortly after take off I made a complaint to the purser about her attitude and her dismissal of my concern as valid. Thankfully he understood and thankfully he had kept an eye out and saw it taken away to be loaded. He assured me that there was no concern. He also said that it was unacceptable and unfeeling to not recognize the seriousness of my request. Then he apologized.

My chair indeed made it.

But I'm left wondering why so many non-disabled people have difficulty in understanding what a wheelchair actually is and why it's so important and why disabled people have so much emotion wrapped up in the chair and their need of them.

Isn't it obvious.

We can't walk.

We need a wheelchair.

What is hard about that?

Saturday, May 05, 2018

The Politics of Shampoo

It seemed like a perfectly ordinary grocery store. We've been there before, in fact, and we'd come back because we wanted to pick up a few 'for the room' things before we headed over the Bay Bridge. It's another part of our routine when we come to San Francisco. We were almost done when Joe remembered that he needed to pick up some shampoo so we headed over to the toiletries aisle.

We turned where the sign indicated that the shampoo and sundry items were kept. The aisle was empty except for two women who seemed to be aimlessly standing in the middle. They were just a foot or two away from the shampoo and it was then we noticed that the whole aisle, the whole thing, was under lock and key. We were confused and they saw it on our faces and explained that they were waiting for a clerk to bring a key and they expected her back shortly.

I was curious so I began looking and the shampoo wasn't the only thing locked up. The deodorant, the toothpaste, the shaving stuff - razors, foam and after-shave, all that and more was behind clear hard plastic barriers firmly locked in place. "But why?" I asked the girls.

The taller of the two leaned down and spoke conspiratorially to us, explaining that the clerk had told them that 'drug addicts' and 'poor people' steal these things and this was to reduce the stores loses. I had a shocked look on my face and they misread the source of the shock, it seemed that they thought that I was horrified at the 'way the countries going'. Out came prejudice and preconceptions about poor people about people addicted to drugs about people with mental health problems.

I said, "You know what this means?" They were eager for me to join in on their torrent of disgust with people who are 'dregs' and 'dangerous.' "That means that when we are buying food for the food back we should be slipping in some shampoo and deodorant and stuff like that. I mean they don't lock up the bread or any of the other food, they lock up what people need to get clean, stay clean. They lock up stuff that will help people feel good about themselves and apply for jobs and get back on their feet. I've never thought about that before, how very awful."

They looked at me as if I was an alien.

And, said, "Yeah I guess you can look at it that way."

I agreed with them.