Sunday, September 23, 2018

Pride on Parade

Photo description: Vita's contingent in the Disability Pride Parade, in front of Queen's Park in Toronto. Group stands behind and beside the Vita Banner.
The 8th Annual Toronto Disability Pride March happened yesterday and I'd been looking forward to it both personally and professionally. I had never been in the Toronto parade before and we began planning to go to it the moment it was announced. We made sure that Ruby and Sadie would be able to come, we believe that these kinds of experiences are important for them to be part of - and so do their parents. So we were all set. At work Vita's self advocacy group was also organizing to take part in the parade for the first time. To say that I was surrounded by planning and excitement was an understatement.
We ended up arriving just a few minutes before the speakers started in front of Queen's Park, Ontario's legislative building. Ran into a few people we knew and met some people I knew just through this blog or through Facebook. Then I saw the Vita group and we all went over to meet up and get our picture taken. Disability Pride is one of the things we promote at Vita and there was a fairly large group of us. 

Once the march actually began it felt good to be taking to the streets to make it clear, make it known, that we are a people, a people to be reckoned with. I wore my yellow shirt to promote my own visibility. See me. Go ahead and see me. I won't let shame put me in mourning, I will not wear black. I don't think I was alone in this. I saw a young man with a white and pink wheelchair. I saw a woman with brightly coloured hair. We were VISIBLE.

Shame built buildings to house us away from others.

Shame built schools to give us a grudging education.

Shame built a world where stairs and stares aim to keep us in by keeping us out.

But shame had no place in this march. Some chanted as we went down the street, others walked in silence. Me, I was one that rolled in contemplation. I had no message to those on the sidewalks that wasn't writ large by my presence. I AM HERE.

Pride is the antidote to more than shame.

Pride is the antidote to more than internalized ableism.

Pride is the antidote to more than the dismissal of our personhood.

Pride is the only pathway to a future of any worth.

And that's where I want to be.

And that's where I was.

Saturday, September 22, 2018

Her Face

Joe and I went into a grocery store on the way home from work and zipped around enjoying ourselves. After a trip away, this kind of ordinary thing signals in a meaningful way that we are home. We got a fair lot of groceries and went to find a check out and found, again, that the two express (8 or less) were accessible but that none of the others were.

Tired of this king of thing, I just decided that accessibility trumped the 8. We went to get in line. The woman saw me and the cart and said, "Go over to four." I told her I couldn't be served at 4. She loudly demands and points across the store to aisle 4. I told her again I couldn't go there, I said that I needed an accessible aisle to get my groceries. She looked at me with disgust and in that moment I knew this wasn't a barrier issue with the store, even if that's how this started, her face was the face of bigotry. She had no intention of serving someone like me at her till.

Another clerk comes along, opens the other express aisle which is also the only other accessible aisle, and she serves us quickly, efficiently and in a friendly manner. I mentioned to her what happened and she said that she had just come along and seen that there had been an incident and that she just wanted to fix it. I asked to speak to the store manager.

We've spoke before.

He's made promises before.

Why do I bother?

But I do.

He had taken the concerns I'd raised to a meeting.

Rah him.

I left.

All of the stuff about the physical barriers and the discussion abut making it possible for disabled people to shop, seriously, still talking about really basic, simple rights, was finished with in my head.

But her face.

The one who denied me service.

The look of hatred she had on her face.

The look of outright prejudice.

Stays with me.

That she felt free to do that scares me. That her hatred had been somehow legitimized. That she didn't worry for a second about the fact that she was doing a job serving the public and my complaint about her behaivour had been made.

She felt safe there.

Which means that disabled people are not.

Wednesday, September 19, 2018

laughing

He laughed at me. He tried not to, but he actually laughed at me. I knew he had been working to take me seriously but then he just started laughing. He was the manager of a hotel we stayed at on our trip. We were in the hotel for a couple of days and I was really annoyed by the inaccessibility of the services. The room was fine but the rest of the hotel was not.

The gym, which I wanted to use, which is important for me to use when I travel, was completely inaccessible. It was beautiful, but I could only get on a landing that lead to stairs, lots of stairs, in every direction. It had clearly been renovated, it was packed with equipment, but the idea of access must have been given a pass because there was simply no way I could get in, there was no second entrance, all I could do was watch others do what I wanted to do myself.

The business center, which I wanted to use to print some documents for the lecture the next day, was inaccessible. I had been in this hotel in the past and the old center was fully accessible but the new renovated one was not. There was no way a person using any kind of mobility device would have been able to negotiate that space. They had had an accessible space and renovated the accessibility away.

The manager was trying to listen to me talk to him about these things and he did the 'it's an old building' but I stopped that quick because, while it might have been an old building the former business center was renovated to become inaccessible ... that's moving towards, not away from, exclusion. The gym had clearly been renovated, the building was old but none of these inaccessible items were.

I asked him why the hotel's website didn't warn disabled travelers that the hotel didn't offer full services to people with disabilities. And then, here's where he began to laugh, I said, "Why am I paying full price for a room in a hotel where I have fewer options than non-disabled people? Why should disabled people foot the bill for non-disabled people? We buy the space and they get the use of it." He found that hilarious.

Really funny.

I wasn't laughing.

It ended with him saying (can you predict?) that he would take my concerns to senior management and they would all talk about it.

Yeah.

That helps.

Now, seriously this is true, I started laughin.

Tuesday, September 18, 2018

The Ramp

Years ago, when I first became a wheelchair user, Heathrow airport was a frightening place to fly into. We'd have asked for assistance to get from the gate to luggage and out and many times we sat up to 40 minutes waiting for that help to arrive. The terminal has long corridors and long ramps, very long ramps, which made it difficult even for those pushing me. 

Heathrow was one of the reasons I decided to increase my upper body strength and decrease my need for assistance. I didn't want the long waits and I didn't want the angry service I received after help would arrive and see me, at my weight, in my chair. It was unpleasant and sometimes a little scary. So, I began trying to increase the strength in my arms and shoulders, I worked on my pushing technique, I disallowed Joe from helping me, unless I asked, even when I was struggling.

A long while later, I do have the upper body strength to push myself around and I've got a new lighter chair which makes distances in terminals or malls almost irrelevant. It's nice to feel that I was able to make some changes and work some muscles that would change my experience of the chair.

So on our flight back from London I had been shopping in duty free when Joe came and told me that our gate was now on the board and we had to go a very long way. At a normal walking pace they predicted a 15 minute walk. Ok, let's go. We found the path and were on our way. Joe was walking quickly and I slowed to keep pace with him.

That is, until we came to a very long down ramp, I said goodbye and flew down the ramp. I wanted the speed of the descent to carry me some of the way back up the ramp on the other side. It did, but then I had to take over. Joe was still way behind me but I kept going, I know my pace was very much slowed by the incline that I was attempting. I was feeling good about it, yeah it was long, but I'd done longer. And steeper. 

I felt my body working, I'd switched my push to a climbing push and I was slowly but steadily making my way up the ramp. I was breathing hard, this was real work, not gym work, real work. I was about half way up when it happened. I hadn't paid attention, I was focused just on getting up the ramp. Someone came from behind and grabbed my chair and began to push. I felt immediately out of control of the chair and I called out for him to stop. He told me he didn't mind. "WELL I DO!" I responded and he let go mumbled an apology and took off.

We got to the gate and boarded the plane. Once again, Heathrow was taken from me. He pushed me about three feet, that's all, but he took the whole challenge away from me. He's now part of my story. I don't want him in my story.

I want to author the story of my own victories and failures. I don't want random strangers to become part of my personal narrative. I'll never be able to tell this story wiithout him. I had wanted to do this, especially the big ramp, on my own. I had wanted to remind myself that I have the strength to take on what I never could have considered a year or so ago.

But he's in my story.

My story is no longer mine.

The assaultive nature of having one's chair grabbed is one thing. The theft of narrative is another.

I don't know which is worse.

Thursday, September 13, 2018

Grandma

It is said we all die two deaths. One is the physical one, and the other comes on the last day that someone ever thinks of you or speaks of you or remembers who you are. When I first read this it struck me as inspiration to live a life worthy of memory, worthy of being tenderly held in the minds and hearts of others. But what I have found is a deep understanding of how people who have made an impact in my life are carried on, and on, and on.

Two days ago we were setting up for me to do two workshops for people with intellectual disabilities in Glasgow. The last think I was thinking about was home and the family of my youth. But, I rolled over to the treat table, before others arrived, just to see what was there. They had these little donuts, chocolate covered, and they were so cute. Wee tiny donuts. I took one.

Back at the presentation table I popped it in my mouth. And the flavour of the donut immediately threw me back in time, to when I was a child, when I was in Grandma Hingsburger's house. She made donuts. No chocolate covered ones, just plain donuts and they tasted just the same as the one I just had. Immediately she was alive to me, immediately I felt the warmth of her presence and the security of being with someone who loved me.

I loved Grandma Hingsburger.

Deeply.

I had told Joe that for a couple of days I was really battled anxiety. I've be plagued with it all my life. It had eaten some of the joy and fun that we were having on the weekend. It placed itself in the center of my chest and it refused to move. I knew they was no reason for it, but things like this don't respond to logic.

But it couldn't stand up to Grandma, not for a second. As I turned to my notes, as I ready myself, as I felt Grandma recede in my mind as work needed to come to the fore, it was gone.

She lived again.

This is the power of love, it allows you to live on and on and on in someone's heart. I'm glad she has residence in my heart, I'm glad that I had her and I'm glad that I have her in my life.

I owe her for her love and for her creating a safe place for me to be, and I love her for it. Memory is little enough payment for that, she is a light load to carry.

Love lives long.

Tuesday, September 11, 2018

JUST TRYING

The day hadn't started and I'd offended someone. Sometimes the hardest part of travel is that you have to be out doing what you usually do at home. Breakfasts, lunches, dinners ... hanging around while the room is being cleaned ... that kind of stuff. As a result we have hundreds more interactions than we typically would and, invariably, disability will combine with an assumption of need resulting in awkward situations.

We had come down for breakfast, a bit bleary-eyed, first day of a weekend off. I rolled ahead of Joe and we chose a place to sit at and was about to pull out the chair and shove it off to the side when a server came and said, "I'll find you a good spot," and headed, expecting us to follow, off to the carpeted area of the breakfast room. I'd chosen to sit where the flooring was rollable, I'd chosen a place where I wanted to sit, I'd asked Joe and he too had agreed on where we wanted to sit. We didn't follow as she expected us to, when she became aware of this, she turned, put her hands on her hips like we were errant children and said, clearly to me, "I'll find you a good spot over here."

I said, "I am capable of deciding where I want to sit."

She said, "I'M JUST TRYING TO BE HELPFUL."

I said, "I don't need help deciding where to sit."

For those bursting to say something to me as you read this, we'd slept late, there was only one other table taken in the whole breakfast area, she wasn't guiding us because of need for space. It was solely a need to take over my capacity for choice making and for the feeling of helpfulness.

We didn't sit where she wanted.

She was angry right the way through breakfast.

Then comes lunch. We go to a Mexican restaurant and we are guided to a table and, without asking me what I'd prefer and chair is pulled out and space is made. Joe and I have been together a lot of years and we live our life in patterns. The way the table was not set ran counter to how we sit at tables. This may sound silly but long-term relationships result in long-term habits and those habits turn in traditions and expectations. Joe pulled the chair back, and sat down and I pulled out the chair from 'my space at the table,' and sat down.

Once again the waiter looked at us, hands on hips, like we were doddery old men who needed to be indulged.

My voice. My choice. My will. My decision.

It's fairly simple.

Except it's not.

Monday, September 10, 2018

Bravery

Again with the toilet.

We'd done our shopping. I stayed with our bags while Joe went off to pee, then he came and waited while I went. Alone. Independently. Because I don't need help doing this.

I got to the door of the accessible loo and pulled it open, suddenly right behind me, a woman is holding the door open. I don't need someone to hold open the door. It's silly but I get embarrassed, I'm an adult man heading into use the toilet and someone I don't know is forcing assistance on me. I told her that I was fine. She told me that she'd close the door behind me once I was in. I told her that she needn't worry, I can do that all by myself.

She surprises me by letting go of the door. She watches to make sure she isn't needed. Again, I'm embarrassed, she's watching me get into the bathroom, turn my chair around and then reach to close the door. As the door is closing, she grabs it again, stopping the door from moving and says with deep meaning and a warm smile, "You lot are so brave." She lets go and the door closes.

I sat there, we're already in the bathroom, I might as well stay there a bit, and thought about what she said. I don't think closing your own bathroom door fits into the category of heroics for which bravery can be properly assigned. I really don't. I don't see how it can be in anyone's mind. We live in a day where heroics are often seen by people who resist the ugliness of hatred and bias and bigotry, taking a poo behind a door you've closed just doesn't seem anywhere near an apt comparison.

But then I thought. Maybe bravery does apply. Coming out and being out as a disabled person in a society that either demeans, dismisses or deifies our presence does take a certain amount of, if not bravery, then certainly verve. I admit there have been days when I simply couldn't go out because I didn't want to deal with what would inevitably happen. They are rare, but they are there. The wheelchair is a magnet for social inappropriateness and I'm a fairly large target.

On the way out assistance was forced on me again, I said nothing, except 'thank you' because I simply wanted to get out, get back to Joe and head on out. I didn't have the strength to fight two battles the same day. I let her hold a door that didn't need holding.

Sorry.

Sunday, September 09, 2018

The Key to Unlocked Doors

As stories regarding disability often do, it starts with needing to use the loo. We are in a huge mall and we follow the signs to where we are promised will be toilets for 'disabled patrons'. When we get there we are confronted with three options provided for customers to pee, poo, or do double duty. There is the women's room, the men's room and then the disabled and family toilets. The only trouble is that the disabled toilets are locked and to gain access a sign tells us to either see an attendant or call a particular number and an attendant will be sent. I haven't figured out how to dial phone numbers here in the UK so, in desperation I ask a woman headed into the bathroom if she could help me and call someone so I could, let's just say, pee. She does. Someone will come.

Then a fellow comes along who is clearly the attendant so I ask him to unlock the door. He gets his key. I ask him why disabled people are locked out of the bathrooms. I don't understand why everyone else gets to just walk in but I have to make a phone call. I'm told that I could buy a key that would give me access all across the country. You lock disabled people out of bathrooms across the entire country? I ask. He says, You are not locked out of the bathroom.

And here gaslighting begins.

I am locked out of the bathroom.

No you are not.

There's the door, it's locked, I'm out here. I'm locked out.

No you are not locked out. You just need to ask an attendant.

There was no attendant, I had to call ... because I was locked out.

No you are not locked out, I am the attendant, I have the key..

But you weren't here.

I am here now.

So, back to my question why do you lock disabled people out of toilets?

He's frustrated now. YOU ARE NOT LOCKED OUT OF THE TOILET.

YES I AM. THE DOOR IS LOCKED.

I am here to open it for you.

But you weren't here when I needed it.

WE DO NOT LOCK THE DISABLED OUT OF TOILETS.

YES, YOU DO.

Here's the thing ... I still haven't gone pee.

I ask and he unlocks the door.

I go in and finish the job I had wanted to do.

I come out.

Just before leaving someone arrives.

She is waving a key in the air, Who called for an attendant.

It's so frustrating when people deny the experience of having a disability. I was to any observer around, clearly locked out of the bathroom, but I was consistently told that I was not. Later I was told that the toilets are locked, but not to keep me out, but to keep the non-disabled from using them. So, I was told, in effect it's non-disabled people who are locked out. But, I protest, I'm locked out too. A head shakes at what is deemed my inability to understand that I'm not locked out of loos all over the country.

We bought a key.

Monday, September 03, 2018

Bursting Aloneness

Instant validation. Sudden connection. Aloneness disappears. So much can happen, in an instant, when disabled people and their allies share stories. When we got off the plane, I handed Joe the cushion, which we'd carried on board and he put it in place. Beside him was a woman who was industriously and efficiently reassembling the wheelchair her son used. He stood, cautiously and carefully, braced against a wall. Once she was done, she helped him get into his chair and started off. We followed.

When we got to the elevator there was room for two wheelchair users and two standuppers. Her husband and youngest son said they'd meet her at the top and then they dashed off towards the stairs. When we were riding up, in an elevator's version of a stroll, I asked them what was the worst thing that had happened to them while traveling with and in a wheelchair.

"Having the chair stolen at the gate," was the response.

"Us too!!!"

This has happened to us twice, once in Buffalo and once in Vancouver. We find that people either don't believe it or explain it away - they probably thought that it was an airport chair. Explaining away the experience, that my chair was stolen, has silenced me from talking about it. Even though, in the first case, the people who took it were caught with it, I had alerted security immediately, putting it in their car trunk. Even though, in the second case, the person was caught at the top of the ramp claimed ownership of the chair and attempted to wrestle it back from the gate attendant, I'm told that they really didn't mean to, it was an accident.

But here, someone who's had the same experience. It was explained to us that they disassemble the chair and wrap it with tape to send it down below, in order to ensure that the will arrive to their chair. I felt like I could talk about our experiences and still breathe, knowing that I won't have it tut tutted, or be accused of being so negative, or have someone explain that it was just a mistake. 

This is why, or one of the reasons why, I need the disability community, why it's important to me to connect with my own community, I need not to be alone and I need to be able to freely share my stories knowing that they will be heard and understood. 

I do not wish to offend non-disabled readers, I appreciate you being here, reading these words, I really do, This blog wouldn't exist without you. All I'm saying is that sharing lived experience, either as a disabled person or an ally, really matters.

Really. Matters.

Sunday, September 02, 2018

He Backed Up

OK so I flew off the handle.

I haven't gotten so pissed off so quickly in such a long time.

I was asking someone about the disabled parking to see if we were in the right part of the parking lot, the part that belonged to their business, and if not, what did we miss. It turned out that the answer was that we were in the right spot and that yes, the disabled parking was furtherest from the business. I expressed surprise.

I got a look.

The a slight eye roll.

Then, "If I were you I would have just chosen a parking space closer to the door."

"If I were you??? IF I WERE YOU???!!!" I didn't say this, I chatting with you right now, I'll get to the part about what I said later. But can you imagine that this non-disabled, young, man has any idea what it is to be a fat, 65ish, disabled man? Can you imagine what experience he has had with parking and accessibility and wheelchairs and space? What the hell gives him the gall to even attempt to get into my mindset and understand my issues? He's not even old enough yet to understand that 'empathy' is an action not an emotion. WTACTUALF?????

He knew he'd said something wrong, that or I'd just gone into cardiac arrest. It took me a second to get my breath back after having been verbally sucker punched. "How dare you. How DARE you tell me how to be disabled. How DARE you think you have any idea about what accessibility feels like, let alone what it is."

I pushed forward.

He stepped back.

I had grown several sizes larger in those few moments.

I explained to him about space and asked him why he thought that disabled parking bays are wider than regular ones, you know like the one that he would have driven to had he been lucky enough to be me. By the time I finished, I was tired. Just tired. Tired.

Ablesplaining is something I simply can't bear.

Don't ask me to.

Because I just won't.

Saturday, September 01, 2018

My Fate Mattered

It was late when we checked into the hotel. We ran into a lot of delays and I'm delighted to say that none of them were disability related, we simply shared the frustrations of the crowds. That may sound odd but sometimes I'm glad that its not about me, my chair or what I'm able to do.

After checking in the hotel clerk came round to where I was sitting in my chair, he knelt down, clipboard in hand, and said he'd like, if I wished, to go over a form with him. It was an emergency procedures form that they fill out with people who have all kinds of disabilities. It had questions that allowed me to direct them with what exactly to do should there be an emergency.

I agree and together we went through the form, it only took four or five minutes to complete. None of the questions were embarrassing or inappropriate, they all focused to the task of keeping me safe.

When we were done I told him that I appreciated the hotel's approach to my safety and that, though he might not believe it, the simple exercise made me feel safer.

In truth it made me feel safer for two reasons. First they had a plan that I had been involved in creating. I wasn't just a random guest in a dusty binder on a seldom read page about safety and accessibility, this was a live document. Second, that they did this at all tells me something about how they view guests with disabilities and how they value us as people - not just anonymous guests.

So I slept well.

Probably due to exhaustion but, maybe I felt just a wee bit safer.

Friday, August 31, 2018

Here We Go

We travel today.

That means, hotels and rental cars airports and long flights.

That also means a long litany of worries and stresses that come, not from travel, but from being a disabled traveler. There is so much trust involved. That the car will be the kind of car we ordered, not an upgrade, not a downgrade. That the room will be the kind we ordered, the kind I can poo in. That the support at the airport will be what we need, what we notified them about. Trust.

I don't think companies understand that this is all about disabled travelers feeling vulnerable and having to paying for accommodations with dollars and with trust. I don't think they understand that's why there is so much emotion involved when something planned for, arranged and agreed upon isn't on offer.

Anger based on broken trust may, for me, burn the brightest.

Yet, I go into the day to do what needs to be done.

To hold up my end of the bargain.

I just hope there's someone at the other end.

Here we go.

Headed to a touchdown in England.

Wednesday, August 29, 2018

A Little Boy Is Dead

A nine year old boy came out to his mother.

She loved him anyway.

A nine year old boy comes out at school.

They tease him brutally.

For four days.

Horribly hurt and frightened, he kills himself.

This just happened.

***
We went to see a play, a musical, wherein in an opening scene the male cast members come on stage shirtless wearing only a towel.

(a little boy is dead)

We are in a very small theater watching a shoestring production. Most, but not all, of the audience are gay men. A group of four handsome, fit, well dressed gay men took the very front seats. We, preferring to sit a bit further back, had selected seats about three rows in.

(a little boy is dead)

There was a bar at the back of the room where people could buy drinks before the show or during intermission. Joe had bought a beer from a bartender who was, clearly, a very kind man. He was one of those people who seem to bring grace and calm and peace with them where ever they go. I had asked him if he'd seen the show and he said that he had only seen it in rehearsals. I remembered, then, that this was actually opening night.

(a little boy is dead)

The first of the men entered the stage, shirtless, wearing a towel. The interval between entry and starting was only seconds, so in that interval, just before he sings the first note which will bring the others out onto the stage, a laugh bursts out from two of the men in the front of the room. They are seated next to each other and they are pointing to the man on stage, the one just entered, the one just about to perform, and they laughed again.

(a little boy is dead)

The man on stage, shirtless, had a fairly typical male body. He was not fat, he was not thin. But he was also not lean, not cut. The two men obviously felt that his body, displayed on stage, was a thing to be mocked. So they did.

(a little boy is dead)

The performers face goes bright red. He knows what's happened. It's opening night, the first time facing an audience, and he has a long road ahead of him to get through the show. He opens his mouth to sing and for a few seconds I didn't think he was going to make it. But his voice found itself, he found his footing and then he started the song and was then joined on stage by the others and the show went on.

(a little boy is dead)

I notice though that he never looked at the audience again. His eyes were on the guy in the bar at the back of the room.  The man who's kindness was obvious. He found a safe place for his eyes to rest. He made it through the show brilliantly.

(a little boy is dead)

***
There is outcry.

About a 9 year old boy who kills himself.

A 9 year old boy who identified as gay.

There is outcry.

About bullying.

About purposeful hurt.

There is outcry.

***

People feel moved to tell their stories. Stories about the complex entanglement that exists between difference and pain, between vulnerability and social violence, between speaking the truth and being killed for it.

***

We all longed for safety as children.

Safety from cruelty.

***

Why do we, then, so easily, hurt others?

Why do we, who should know better, do worse?

***

A little boy is dead.

***

And we want change from others.

***

But are not moved to change ourselves.

Tuesday, August 28, 2018

My Microphone

Date Night 3

I was pushing up the ramp at the front of the hotel when one of the valets noticed me and headed towards me. Seconds after he launched himself in my direction he was saying, "I'll help you there sir." I said "No" and the perpetual conversation started he didn't mind, I did. Joe usually protects me from these incidents by walking behind me and blocking people's access to the handles on the back of my chair but he had gone into the hotel to get change to tip the various people who you tip when at hotels.

I was nearly at the top of the ramp when the valet arrives, then, a voice. "He said, No!" I glanced over and saw that a man with an intellectual disability who was cleaning the front area of the hotel by using a long stick to pick up garbage and cigarette butts, his eyes were on the valet. His eyes meant business. The valet stopped. Then he nodded and apologized to me and left me to finish my way up the ramp.

When I turned to thank the fellow who spoke up for me, he had returned to his work and though he didn't speak to me, he did give me a brief nod. He'd heard the thanks, but he was at work. Perhaps he'd been taught not to speak with the guests. And he hadn't. He'd spoken to a fellow employee.

But he spoke to that employee with power. He knew what he wanted to say, and he said it. It was he who gave the instruction and he who was listened to. He'd seen the problem, recognized it for what it was, and added his voice to mine. He simply restated what I had said, he didn't add in anything new. He was my microphone, not my voice.

As I came through the door I was met by a woman who explained to me that she was the job coach for the fellow outside. Then she apologized for his behaviour.

She apologized for him.

He didn't do anything wrong.

What he did was exactly right.

But I got the sense that he'd overstepped his authority, that he was supposed to be silent and unseen, that he should let others handle things. Coaching someone into submission. Well, that turned into a lively discussion. She was surprised at my passion when speaking of what he did and why it was important to me, a guest at the hotel, that he did what he did. People with disabilities should not be trained to be cowed into complete submission and silence. Speaking up for self, for others, when needed is not only a skill but one that is entwined with courage and conviction. Things to be fostered not eliminated.

"You were going to speak to him about this weren't you?" I asked.

"Yes," she said.

"Then say 'Thank you' from me. Then leave it alone."

And that's what I hope she did.

Sunday, August 26, 2018

The Journey Home

date night 2

She walked away swearing, calling us names, and we continued chatting. Growing up gay, living with or around disability makes coping with anger at our public presence a necessity. Our conversation was coming to an end, all caught up again, and we were about to part and then something happened.

But first, some background.

When we first met he we were both a bit shocked at his nickname. He used it in reference to himself, everyone else used it when speaking of or to him. Having had nicknames growing up, the kind that I did not choose for myself, makes me very wary of words formed for the purpose of hurt. In our very first conversation with him I offended him by asking for his name. He glared at me and said that we went by this nickname and that's what we were to call him.

We did.

We didn't like it.

But we did.

People choose how they identify and what they wish to be called.

They don't need my approval.

One day he told us how he got the nickname. A small and relatively frail child in school, he was, in his words, "a natural target for bullies," and they focused on his size and his demeanor and came up with a nickname meant to humiliate. It stuck. He was called that name for the whole of junior and senior years in high school. He graduated, left the small town he lived in, and moved to a big city. He introduced himself to people in his social circle by his high school nickname.

"It's ugly, but it has no more power over me," was his explanation.

Two years into knowing him, we found out his birth name. The name given to him by the mother he loved, very separate and distinct from the name given to him by bullies who used hate to pick a name. Even after learning his name, we never used it. We were requested not to, we honoured the request.

So, we were about to part. He was telling us about something that happened recently and he said, "And  I said to myself, 'his pre-bully name' ..."

We had never heard him refer to himself by his name. We had only heard him speak of himself by using the name given to him at the hands of someone who hurt him, physically and emotionally. The impact of what he said showed on our faces.

"Turned out it was my own name that needed to be reclaimed," he said. "Turned out that being beaten up and bullied as a child wasn't my fault." He wiped a tear away from his eye and said that the had to go.

As I pushed away I could hear his walker scraping along the sidewalk on his journey home. It has been a long walk, but I think he's finally going to make it home.

Saturday, August 25, 2018

the reminder

Date night.

Joe and I planned that he would pick me up after work, we'd check into a hotel downtown, then we'd go to dinner and a play. The play we wanted to see was only playing, its whole run, for two night. It started at 8 in the evening. We go to matinees. Only. We decided that since we'd be doing something in the evening we'd call this adventure a 'date night' to distinguish it from our typical 'date late afternoons'. 

Each of us kept waiting for the other to say, 'Ya know, it's pretty late, the theatre won't get out until nearly 10, we will be halfway to pumpkins then.' But we didn't, we were both determined and by the time we arrived at the hotel we were ready to go.

After check in, we decided to go check out a book store slash coffee shop that had open a bit ago that we'd never been to before and were curious about. I was determined to use this as a chance to practice my outdoor pushing, Joe knowing that just walked beside me and kept an eye out for 'let-me-helper' flying at me from every direction.

We were near a street corner, on a wide sidewalk when we saw a man we hadn't seen in years. He uses a walker, he's much older than we are, and time had not been his friend. He'd been gay during a time of great persecution and he'd been hurt to the point of permanent emotional damage. He managed every day to simply get by and he used whatever strategies he could to survive inside himself.

We were a little surprised to see him.

We were amazed he was still alive.

But, in fact he looked good. He came to a stop with his walker and I came to a stop using my chair. There was room for one person to walk by us on the sidewalk if they so chose. But non disabled people often cannot see that space. They cannot even imagine that the can use that space. But it is there.

A woman and her dog came along and stood behind our friend as we chatted. The street we were on is really residential and, even in Toronto, is a quiet street. She clearly wanted us to stop talking and move along. When we didn't she became really, really, really, angry.

Please don't tell me that a woman's anger is an insignificant thing, please don't tell me that I should not be intimidated by a woman's anger and a woman's capacity to misuse force. I feel my vulnerability often in this situation. It's a disability thing. I can't run. I can't escape. I'm naturally lowered and an easy target. She scared me.

I spoke to her.

"What are you so angry about, there's lots of room to pass."

That got her moving. Towards me and the space beside me. She let off invective about us 'fags' and 'cripples' and 'sidewalks' and 'space.' The dog who paused for a second to sniff at the wheel of my chair was yanked away from me with a sharp command.

She was angry.

In a world where there is so much to be angry about. Where, if she chose to, she could sit with me while I off loaded a series of aggravants that she could choose from.

She was angry.

I feared violence.

All because we three used public space. Walkers and walkers and chairs together, using public space on a sunny day in the summer. How dare we?

We dare, simply because, the community belongs to us.

I don't even say 'too.'

Because our ownership isn't an add on.

We continued our conversation, each of us now knowing, how choosing to live life fully is still an act of resistance. None of us needed the reminder, but none of ignored it either.

Monday, August 20, 2018

The Face Between The Seats

We had all arranged ourselves for our flight to Halifax and were settling in. It was a small plane with a two and two configuration and as there were 5 of us Joe ended up sitting on the aisle with someone else and the girls had their choice of seats in the row behind. Sadie chose to sit next to me by the window and was as exited as one would both expect and hope for when we took off.

About an hour into the flight Sadie announced that she needed to go to the bathroom. I told her that I get up only once on a plane, to get off, so she'd have to crawl over me to get out. She thought this was funny and I ended up being a playground obstacle that she scrambled over, giggling the whole time. This motion and the unusual entry of Sadie into the aisle was noticed by a girl in the seat behind, a girl of about Sadie's age.

Sadie came back and it was a dive into the seat next to me that got her there. Sometimes disability is just plain a fun thing. She occupied herself chatting with me, watching a show on the screen in front of her and looking out the window. Amazingly, sometimes she managed all three. 

Landing brought more excitement. We were here, the vacation, or as Sadie said it, "Vacay" was about to begin. I get off last because I wait for the chair, and an empty plane so I'm not on display as I get out of my seat. Sadie was just set to scramble over me again when the face of the girl behind came between the seats, and set about watching. Clearly eager to see how Sadie managed getting over me.

Sadie saw this. Long ago Sadie expressed to me how much she hates it when people stare at us. She doesn't like it for me. But she hates it for her. She doesn't understand the need of it. She doesn't like how it makes her feel. For her it's one of the downsides of being in my life. It happens all the time.

Even though it happens all the time, this was pretty blatant and this was Sadie's peer. I watched to see how she'd handle it. Sadie turned to the girl with a look that would scare Medusa. It's simply said, "STOP!" in a way that communicated that there was no other option. Sadie's eyes never left the girl's eyes. She watched here watching us. 

Then the girls head slowly pulled back. And then, was gone.

As if nothing happened, Sadie was up and giggling and leaping over me into the aisle. She joined her the others as they deplaned and I waited for my chair, and privacy.

It's been interesting to see that the girls, who have a choice, make that choice. They could easily decide that they don't want to be around me much when were are out. That has always been an option. They could simply walk with Joe, or when we are with other family, walk with them. Sadie could have chosen to sit someone else, there were other choices. But they didn't make that choice. They chose instead, each of them, to develop their own strategies for dealing with the stares, the looks of disapproval, the needless cruel commentary that is part of being in relationship to someone like me.

It thrilled me that Sadie clearly saw that I wasn't the problem.

I wasn't the problem.

I need to say it again, for me.

I wasn't the problem 

And that I was worth being around in spite of all the rest of it.

Love takes many forms. For those of us who are different. This is one of them.

Sunday, August 19, 2018

I'll Start With Apology: I'm Sorry

I'm about to come out, and I'm afraid that some of you will be utterly disappointed in me. But I feel I need to be honest about something.

I want to be a good member of the disability community. I want to use my voice and whatever power I have to make change. I feel moved and motivated to speak out when I see, or hear, or come into contact with disphobia and ableism. I have written hundreds of emails and letters and I have signed petitions that have come my way. That's just personally, when working on the road giving lectures I use the opportunity to speak of disability identity and disability pride, all the time.

(I am trying to establish my credentials here.)

I believe what most of us believe.

#disability say the word

#access for everyone

#disability pride

#give disability actors a chance

Um, it's the last one that I want to speak about. I do believe that actors with disabilities should get the opportunity to play disabled characters in television shows and movies. I do believe that there are characters written where someone from any minority could play and not change the script - so hire disabled.

I have a friend that patently refuses to watch any movie or show that has a non-disabled actor playing a disabled role. He is so adamant about this that he has admitted he thinks less of activists that "would put their money down, and thereby finance, entertainment that discriminates in hiring and disrespects an entire community." I get it, I agree with it. He's right. (Except about the 'thinking less of' part - which seems a bit judgmental.)

But sometimes I thirst.

Really thirst.

To watch something that has a main character with a disability. I want to be able to identify. If a story comes along with a richly written character with a disability who is an active participant in his own life, a character that is necessary to the plot, a character who has layers and who's attitude toward their disability is as complex as mine is to me, I want to watch it.

There aren't many.

But I'm watching a television series right now. One of the primary characters is a wheelchair user, and he meets all the criteria for being a dynamic, proud, guy with a 'piss on pity' attitude. Yes, the actor playing him is non-disabled. But when watching the series I identify with the character and the actor behind him is kinda meaningless to me. I'm seeing storytelling that captures disability and the disability experience. And now, Season Two, there's another disabled character just introduced. A very different guy, a very different attitude, but, again, with drive and purpose that both includes and does not include his disability. I'm in entertainment heaven.

I'm watching in the closet.

Neither actor has a disability.

I tell myself that I'm watching the result of the writing, not the casting. These two characters are written with the same care and respect as all the other primary characters. The show doesn't shy away from diversity, with the slight exception of LGBT issues, although there is an episode with a bisexual character.

I'm one show away from the end of season 2. I already know because I looked it up in a panic, there will be another season. I rejoiced at the news because it meant I get to see more of these characters, who I care about, and that stories with disabled people in vital roles are being told, and maybe that will lead to people thinking that disabled characters can be heroes and villains and help carry a shows story line, then maybe, just maybe there should be more characters with disabilities and more thought given to the casting. Maybe.

But 'maybe' or not.

Sometimes I thirst.

To see disability storytelling.

And sometimes that thirst has me compromising.

I'm out!

I know this will deeply disappoint some of you, but I don't want to pretend to be someone I'm not.

Saturday, August 18, 2018

Wings


(photo credit: Theo Wargo/Getty for Tribeca Film Festival)
Photo described in text.
I was reading an article about the death of Aretha Franklin, a woman whose music I have enjoyed over the years. Like many of her fans, I was deeply saddened by her death. The photo which headlined the article was beautiful. It was a picture of Ms Franklin with her arms wide open, singing her heart out, she looked joyous. The microphone was in one of her outstretched hands, this is a woman who's voice could reach the back of a concert hall without assistance. I thought, when looking at it, that it was the perfect picture for the author to use as a send off. I could easily imagine angel's wings behind her and heaven waiting above her.

Foolishly, I went to the comments.

The article was only recently published on-line so there was only one comment. Hold on, while I go and clip it and bring it over for you to see:

Damn those are some bingo wings.

I sat there stunned. I am constantly surprised at the casual cruelty that exists. I am astonished that I am expected to find this remark funny. Once I understood what was being said, my hands flew off the keyboard as if I was afraid that I would catch the cruelty virus through contact in any way with those words. They are there anonymously. They are the first comment.

I admit to not knowing what was meant by the comment. I wondered what 'bingo wings' meant. And then, I knew, I didn't have to go back and review the pictures, I knew that there would be one that would have occasioned this remark.

But that's wrong isn't it.

The picture didn't cause the remark.

I never thought the picture was anything but magnificant.

It's easy to blame the picture.

But it holds no blame.

The person making the comment is solely responsible for what was said. Of a talented woman. Of a woman who gave to her community. Of a woman with massive talent. Of a woman, just passed away.

There is shame here.

But not hers.

BUT NOT HERS.

The shame rests in fingers that type words that are meant to demean another. That are meant to scorn those who live in the real world, in real bodies, doing real things. There was nothing virtual about Aretha Franklin. She was as real as real could get.

And that exactly why we loved her.


Tuesday, August 14, 2018

I'm Sorry

I was going quickly.

When on my own, in my new chair, I can go much quicker than a walking pace. Because of the construction of the chair, I do this without breaking a sweat. I enjoy the speed of the chair and the power of my arms. It's so freeing.

I was pushing towards a vendor in a relatively deserted hall. Between me and my path a woman with a walker pulled up to a seat. I saw her. I was enough distance away for her to decide to step either right or left to get to the seat she had chosen. She chose to step in such a way that I would have to make a minor adjustment in direction to avoid being near enough to collide or near enough to scare her as I whizzed by.

Nothing happened.

Nothing happened.

I didn't run into her.

I didn't scare her.

I doubt she much noticed me.

But someone did.

I continued on and then saw a woman waving me down. I slowed the chair and angled over to her. She said, with much disapproval, "You've got to be careful with that thing, it's not a toy."

And I am so sorry, dear readers, I didn't take the opportunity to educate.

She had entered willfully into my day. She had pulled me over to admonish me. Like disabled people need parents at every  moment of every day. I was stunned.

And, again, dear readers, I didn't take the time to explain to her that I was careful, that I had seen the woman with the walker and that I made sure she was safe at all times.

Whether or not a chair can be or should be a toy is not up to her or to anyone but me. It's my chair, it's my time, it operates at my will. I do not need people to tut tut about me using the chair in any way that I want as long as I am always in full control.

Finally, dear readers, I didn't dig down into my bag of compassion and understanding for the deep need that non-disabled people have for commentary and intrusion into the lives of those who consider disability permission to interfere and interrupt.

No.

I said, "I didn't fucking run into her did I" ... "Well? Did I?"

And I rolled off.

Dear readers, I desperately do not feel the need to apologize for what I said and how I said it.

Sorry for not being sorry.

I sometimes am simply and completely human.

(And frankly, sometimes I enjoy that.)

Sunday, August 12, 2018

Present, Past and a Couple of Chairs

On holidays, I try to turn off the outrage button that rests somewhere inside my chest. I just want to let some things slide and just deal with the situation and get on with it. I don't want to always have to report it, write letters about it, or even post about it. A place says it's accessible and then we find that the attempts at accessibility are laughable so we figure out a way around it ... do it ... let go of it. At one place Joe was muttering about accessibility and I asked him if we could just deal and enjoy. I left my warrior clothes at home.

But that's a wearing stance to take I discover. And it broke in me last night. I went down to get a table for a group. I was taken to a table that had two more chairs than we needed. I was in place and then those two chairs were being dragged away, one by one, I asked her not to do that. I said the chairs were fine where they were. I was told I needed space. I said that I had enough space. Then it was a series of 'really, I don't mind' and 'I'm just wanting to make you comfortable' and 'it's okay it's my job' in my responses to 'NO, PLEASE DON'T' and 'REALLY, DON'T'. She never heard me and when she was done, I sat at a table with this huge gap on either side of me. The rest of the chairs bunched across from me.

Like there was no way in the world that someone would want to sit next to me.

When Joe came down I was almost in tears. I explained and Joe's face hardened and then he began rearranging the chairs so that each chair had a bit of space around it and people could, if they chose, sit next to me.

When they arrived, they did. I was not an island alone across the table.

I tried really, really, hard just to let it go for a week. But I discovered that some of my outrage is based on just plain hurt. Why is my voice not important enough to hear? Why do others assume they know what I need better than I do myself? How can I be so obviously present and so obviously immaterial at the same time?

Why can't people imagine that someone would want to sit next to me?

Insecure children become insecure adults a lot of the time. I remember as a child when no one wanted to sit next to me. Past hurts can become present hurts. Too much goes on inside each of us for anyone else to understand.

That is, unless, they listen.

But to be heard, one needs a voice that is valued.

When the hostess, who had hauled the chairs away, came by later when we were all eating and laughing, she looked at our table, like something was wrong.

Because she couldn't see what was right.

Saturday, August 11, 2018

Getting To Done

Sometimes my mind makes odd connections.

We were sitting on the boardwalk watching people go by. It was a beautiful hot and sunny day but our seats were in the shade and we looked out onto and over the Halifax harbour. People strolled by and we chatted about everything but work, we had realized that the time had come to set that aside for awhile.

Not far from where we sat was a ice cream parlour and many of those walking by had cones or cups that they were enjoying as they walked. Three young girls, maybe very late teens, came  by with a very spritely and beautifuly black dog. They took a seat at the edge of the boardwalk and it was only then that we saw someone had purchased a cup of ice cream for the dog.

They set it down and the dog immediately, upon given permission, went for the treat. He tilted the cup on its side and placed it between his two front legs, holding it firmly, and then licked with rapid fire speed. One of the young women noticed this and reached over and took the edge of the cup and set it upright. The dog stopped, looked at her, and then took tentative licks into the upright cup.

Soon, though, he had it back in his position and was racing to get the sweet from the bowl into the belly. Again it was noticed and again, the bowl was turned upright. This happened three times before the ice cream was finished, and each time the dog looked at the woman who turned the bowl upright with curiosity.

"Don't you realize I'm a dog? Don't you realize I do things the way dogs do things? Don't you realize there is no doggies social etiquette that states ice cream cups must be eaten in upright position? Don't you realize that it's harder for me to eat in a manner that doesn't suit me? Don't you realize that you don't need to control everything and have everything your way?" The dog finally got to done, he turned around with the bowl out of reach and held it between his two front legs and licked until every bit of it was gone.

Now, obviously the dog loved having the ice cream and it was lovely of his mistress to buy him one. He was thought about, cared about, and given the same treat as everyone else. That's lovely.

But, I thought, because I couldn't help it. That this was a metaphor for so much in my life right now. So often people with disabilities are expected to do things the way their staff thing things need to be done. Too often the staff worry, not about the end product, but on the process for getting done. People with disabilities interrupted from doing things the way they want to do it because it deviates from how staff do it. "Don't you realize I have a disability and do things differently than you do?" "Can't you try letting me get to done in my own way?"

I read in the paper about immigrants and their way of doing things, their way of seeing things, and people upset and outright challenged by it. Like they somehow are losing control over the 'way things are done'.  Why is it necessary for difference to challenge rather than enrich? "Don't you realize that I may have a different definition of done?"

I sense an increasing disacceptance of me as a gay man and of the relationship that Joe and I have. Everyone else sees a burst of pride and feel a movement forward. But I am not alone in fearing that there are now other voices getting louder protesting our way of living. I fear that hatred is weaponizing disapproval and I see the results in report after report after report of people within the LGBT community being targeted with violence. Our way of doing things and seeing things is simply too different. There are those who don't even want us to make it to 'done'.

Canadian history is shamed by it's need for Native Canadian kids to be forced to do things the way the invading forces wanted it to be done. Like the narrative on how we get to 'done' had shifted under their feet when we pulled the land from under them? Families torn apart, children damaged and traumatized. We hide our history under a veneer of politeness. We cared too much about eradicating difference that we ended up attempting to eradicate a people.

The girls finished, picked up the dogs cup, and wandered off. They probably thought they'd had a nice ice cream break. They probably had no idea that my mind was making connection after connection while their dog simply tried to eat his ice cream in a way that suited him. He did get to done, he did get to finish his way, but he had to turn away, turn his back on those who tried to insist that bowls are always upright. He had to protect himself and make himself alone.

The dog had left happy, perhaps because he'd just had ice cream or perhaps because he got to finish it his way. Maybe both. But, here's the thing, it didn't matter that he held the bowl between his legs.

What mattered was that people cared about it.

So, just don't care.

We're all just trying to get to done.

Friday, August 10, 2018

Some Do

Joe and I had checked out the ramp down to a floating bridge that connected one part of the harbour from another. At the top, after consideration, I felt that it was doable. It was steep but I had Joe for help. What I couldn't see was at the bottom, maybe three or four feet from the end, the steep slope tilted and became steeper. When we got there, I panicked. I felt out of control and I was terrified. 

Joe helped me turn the chair around to go down backwards, something made difficult by the steep slope we were on and by the narrow ramp. I lost control of my breath. I was truly and deeply frightened. It didn't help that when turning I saw that people were waiting to go both up and down the ramp and we impeded access both ways. So they took the opportunity to watch as we struggled. 

I felt on display.

I get that people do that. 

I get that it isn't always hostile.

But I wish they'd get that, at that moment, their watching made it more difficult.

There's always one, isn't there?

A woman said to her family, "Let's turn and watch the seals, give this man some privacy." I couldn't see what she did because of the flurry of activity, the beating of my heart and the adrenaline pumping through my veins. But I did see, when I turned, a whole family. A mom, some children, a dad, and two elderly grandparents, all turned away from me. All giving me the moment I needed.

Those are the people I choose to remember. Even though I understand that very few people would get what I needed in that moment, I need to notice that some do.

Some do.

And that gives me more comfort than you can possibly imagine.

Thursday, August 09, 2018

Chocolate Canada


Yesterday I heard two people talking about immigration, they were against it. They feared the people and they feared for the economy and they feared for their safety.

Yesterday I saw a meme about immigration. People really angry at the direction that Canada has taken. We are losing our culture. Claims that someone somewhere wants to ban bacon. Seriously.

Yesterday I bought these chocolates. I was intrigued by the packaging and placement. It was in a section of local, Canadian made products and it said, "A Syrian family tradition" on the box.

I picked it up.

On the front was a picture of chocolates, the name of the company, Peace by CHOCOLATE, company establishment date, 1986 and the slogan 'ONE PEACE WON'T HURT.' On the back was the story of the company. "For more than 20 years we shipped our specialty treats all over the Middle Easst. Like much of our homeland, the Halal chocolate factory was destroyed in a bombing that forced our family to leave everything behind and flee. With the support of our new Canadian community in Antigonish and the people of Nova Scotia, we have rebuilt our chocolate company and are once again doing the work that we love."

I opened the box.

I don't eat sugar anymore but I was with people who were eager to try the chocolates in the box. The declared it either, 'excellent,' 'really good,' or 'fabulous.' It's a good product.

So a family flees for their safety. Comes to Canada and creates jobs, pays taxes and makes a contribution to our life as a country and as a people.

Where's the meme for that?

Where's the talk about that?

People seem to want to disbelieve their own eyes, the evidence that immigration builds Canada. That contributions are made to our culture.

There are those that would tear at the fabric of Canada.

And call themselves patriots.

I love my Country. I worry for its future, not because of immigration but because of the entitlement of those who consider themselves, falsely, as 'true, original, Canadians.' Those that deny their status as children of immigrants who decry immigration.

A family.

Fleeing terror.

Now creating Peace, piece by piece.

Friday, August 03, 2018

What's Up

My life has been a little out of control over the past several months. What with work here in Toronto and the travel I've been doing, there has been little in the way of down time. I found all the work exciting and the lecturing satisfying, but there's been little time for other projects. Friends will attest that it feels like I 'ghosted' them. (Frankly that's a brand new word for me.)

Something wonderful happened a few months ago. I was approached by a publishing company about developing a book for them and I accepted immediately. I was so excited, it's something I really want to write. But I've had to push that back over and over again because of what was happening with the rest of my time.

I have decided that not only do I want to write it, I REALLY WANT TO WRITE IT. And so I've begun. Got a good start. The editor is awesome and really helpful. So, I'm going to put my attention there and see if I can focus time and energy on the project. Did I say, that I REALLY WANT TO DO THIS? And that I'm honoured to have been asked.

So, what this means is that for the next little while my blog will be updated less frequently. I like to write in the mornings and the blog takes up more time than you might imagine. I will still update the blog but it won't be daily as it has been for years.

I am starting an adventure.

And, no, not telling you the topic or the company, that's all for later.

Thank you in advance for your understanding.

Wednesday, August 01, 2018

Why Did The Disabled Person Cross the Street?

Sometimes I just need to expect cooperation.

There's no time to ask for it.

I have to trust that people will see a situation and adapt.

Disabled people are good at adapting, living with disability means a lifetime of adapting, it's a skill, an important skill. But, I find, sometimes that those without disabilities have a really tough time with it.

I was rolling, backwards, across College Street. It was near noon, I had to go backwards because of the streetcar tracks. The big wheels go over first the small wheels follow happily along. My chair can not do it in the reverse. So, I go backwards.

Now, I would think that people would understand there is a reason that I'm going backwards, on a busy intersection. I would think that they would get that I wouldn't do it the hard way, looking over my shoulder while steering, if I could do it the easy way, looking forward. Maybe even one or two would get that what they thought was the easy ways, was in fact, maybe not.

I expected the flow of pedestrians would simply have flowed around me, non-disabled people being able to step sideways after all. And they did, for the most part. But also, for the most part, not happy about it. All I wanted was to cross the street. That's all. I didn't want a running commentary about my selfishness.

Then when the street was crossed I need to get up the curb cut, which is now full of people. I have to ask, several times, for people to let me pass. My ass is sitting in my chair on a busy street because I can't get people to move. Polite asking turns louder and more assertive. I am now, I am reliably informed by those in attendance, an 'asshole' one even called me entitled. Shit! Entitled to use a curb cut to get to the sidewalk, how low do you have to be down the social ladder if THAT'S entitled?

Would it have been easier to just have Joe pull be backwards?

Yes.

And no.

In the moment it would have been easier, but in the long run, it would make me feel that I couldn't go out or cross a street without 'supervision' or 'assistance.' He did walk along side me and give me hints as to whether to go 'passenger' or 'driver'. I don't know right and left, but I do know sides of a car. He could have gone east or west and I'd have been fine, but he's not great with that kind of positioning.

But I made it across.

I made it up and down the cut curbs.

The physical barrier.

I've adapted.

But, I have to use calming strategies to keep myself at peace.

Why did the disabled person cross the street? Just to piss you off.

Tuesday, July 31, 2018

The Arm, The Shoulder, and Accessible Space

We had gone to the Royal Ontario Museum to see three exhibits. That is a lot to fit into a visit there, but we were determined Ruby and Sadie and their mom, like us, had been looking forward, like us, for awhile. We started with the spider exhibit which was simply amazing. It was so interactive. It was packed with information. It was well worth our time. For the most part the exhibit was accessible but there were a couple of spots where people in wheelchairs couldn't enter, which was unfortunate because it was a structure built for the exhibit, so they could have, but didn't, which is a message that I simply refused to hear. I didn't want to be on accessibility patrol, I wanted to have fun.

After lunch we went upstairs to see the other two exhibits, Transforming Fashion and Transforming Space. Half way through the fashion exhibit Sadie had to take a bathroom break and her mother went off with her so Joe, Ruby and I wandered further into the show. At one point Joe broke off and said that he's wait there to let Marissa and Sadie know where we all were.

Ruby led and I followed, she knows the museum inside out, and turned a corner into a small space that was showing a movie about the designing fashion exhibit. When I came round the corner I saw two men, sitting closely together, one with his arm around the other. Ruby sat down, I parked beside her. One of the men glance our way and immediately took his arm away from the shoulders of the other man.

My heart broke.

They felt danger with us there. The touching, which was no more than any straight couple would do, had been tucked away into a quiet corner of the exhibit.

I wanted to scream.

Not at them.

But at the world that they live in.

Where fear is an automatic response to being seen.

I couldn't watch the movie, all I could think about was that the touch stopped. I constructed things to say to them, but it all sounded good in my mind but would sound silly or patronizing coming out of my mouth. I couldn't reassure them that it was safe with us to be affectionate. But I don't own space and it's not for me to grant accessibility in my presence.

There are all different kinds of accessibility and they are all about access and welcome and safety. It's too limiting a concept to reduce it to a ramp and a lowered counter. We, as the disability community, need to begin promoting accessibility in all its forms in an inclusive manner.

Its a challenge for us to be as inclusive with the concept as we can. We may be routinely left off the diversity bus, but we don't have to return the favour.

Accessibility doesn't belong to us.

But we sure as fuck know how it works.

And what it means.

And what it can do.

It transforms lives. We have the concepts up, dusted off, and ready to go. So, let's lead.

Sunday, July 29, 2018

Is She Safe?

Yesterday, after the gym, we went grocery shopping. Maybe I should rethink that routine. However, I got out of the car and into my old chair. It's the one I use in the gym because it's already beat up. After using the new one for quite a while now, this one feels like a clunker, it's heavy, it doesn't glide, it challenges me to get it where I'm going. It's like it's annoyed that I dragged it out of retirement just for the silly purpose of getting toilet paper and wet wipes.

Anyways, I was pushing uphill towards the store and working hard to do it. The traffic stopped awaiting my passage over the pedestrian marked route. A woman saw me, saw the traffic and headed towards me. Joe, who often intervenes in these situations had stayed behind gathering our cloth bags to pack the groceries in. He arrived to see her headed towards me, saying, 'Would you like some help?' with a determined face. I said, "Thanks, but no." She stopped, to her credit, didn't press, a testament to her ability to listen, turned and left walking the stiff walk of the mightily offended.

We got into the store and a short time later I was behind an elderly woman, holding on to her cart for dear life. She had stopped. I asked her if I could pass by and she startled for a second and pulled over to the side. She and I chatted a little bit as I went by, a lovely lady.

Over the course of the shopping trip, my chair grumbling all the way, we kept running into each other. She always had a quip or comment to make. She was funny. She was also, I realized, accompanied by the woman who got annoyed and offended by my refusal of help.

And that scared the shit out of me.

You see, I think if someone is impatient with me, for simply wanting to be independent, what do they do to those in their care. What needs do they get from helping and are those needs healthy? What will impatience turn into when no ones watching. Anger? Frustration? And what will those emotions translate into when they become actions.

Is she safe?

You may think this a stretch. I do not. I think good staff see the word 'no' in relation to an offer of help as welcome. They see it as a sign of independence and effort and even self esteem. I think that good staff feel honoured when someone they serve isn't afraid of their power and their temper and their prejudices.

But.

I help you because I need to help you because I have a hole in my soul that needs filling with your dependency on me. Your vulnerability and weakness is necessary for my feeling good about who I am. Pushing you into the store excuses me from pushing myself into a fuller life.

She may be safe.

I hope she is.

But I fear she's not.

Saturday, July 28, 2018

Help

We needed help with something here where we live so we called Marissa to see if she'd come over to give us a hand. She arrived with the girls in tow and she and Joe set about doing what needed to be done. We would not have needed help if I wasn't a wheelchair user, but I am. This used to bother me. Not any more. People need help all the time. I need it much less than people think I do and sometimes much more than I'd rather. I wonder if we all have complicated relationships with being helped, probably so.

While they were doing that the girls and I went out to play basketball. We live on a circle, a little roundabout, with a basketball hoop  set up at the edge of the circle. So we went out and tossed the ball around a bit. Then we set about shooting for a basket. We play a game. You shoot until you get a basket and then you count the number of baskets you get in a row. The one with the highest number of baskets is the winner. I never win, but I'm not always last. Since I was horrible at the sport in the school, I feel great victory when I score.

Another thing I do is time the girls, one at a time, running around the circle while dribbling the ball. Sadie didn't feel like doing that this time. Ruby did it in 17 seconds.This time for the first time, I wanted to try, sans dribbling of course, and it took me 50 seconds. I pushed hard and some of it was downhill.

After a while Joe and Marissa came out to join and I asked if someone would walk with me as I pushed over to the sidewalk and then up to the lights and then back along the running path to the entrance to where we live. I am planning a very long push in a couple of weeks and I wanted to see how I managed on the terrain. The uphill was a bit of a struggle, one that I was left alone to have, but I made it.

Why am I telling you this?

Well.

When I was first disabled and we had to call for help because I wasn't able to assist Joe with something, I went dark. Very dark. I felt useless. I felt unnecessary. I felt the weak link in the relationship. I hated it. Sometimes, depending on what the help needed was, it could affect me for days. I found it hard to make peace with interdependency  even though I preached it in the lectures I gave. I wasted so much time.

Yesterday we needed help. We asked for it. While it was happening I played basketball. We were laughing, urging each other on, and competing hard to win.

I didn't come close to winning.

I came last.

But, this time, in life, I came first.

Thursday, July 26, 2018

lady liberty

A woman with a disability stopped by my office briefly today. She said that she wanted to talk to me next week and we set a date and time to sit down and talk. She told me a bit about what was going on so I'd know what she wanted to talk about. She told me about things that were coming up that she was scared of ... and she told me of changes she wanted to make. She looked emotional and completely engaged in what she was saying. 

I listened.

And I listened hard.

This is a woman I met when she was living in a huge institution. There people feared her. There people avoided her. There life passed her by.

Her eyes.

When I met her.

Were dim like the dark that comes when life is no longer fuel.

Her voice.

When I met her.

Was soft, and distant, as if she'd given up the idea of being heard.

Now here she stood. Fire in her eyes, strength in her voice. She is fully engaged and takes each breath like it matters, really matters, that she is living.

She held no torch.

But she is lady liberty.

Her road has been long and hard. But is it is her road. For better or worse she decides which turns to take. And she wants to talk to me, again. She remembers the first time we spoke. She remembers me being there, in that place, she remembers the captivity.

So we will meet and she will have things to say, stories to tell, demands to make.

Not just because she is alive.

But because she is free.

And the lights turned back on.

Wednesday, July 25, 2018

f**k


Note: I was unable to download the video to the blog, see the link below.

I was challenged yesterday to explain my involvement in this video. The challenge came because the person who was upset with me 'thought I knew better.' Words flowed like 'inappropriate' and 'vulgar' and 'offensive.' What I wasn't able to find room to do was what they asked me to do, explain why I had written this, when requested by Open Future Learning, to write short vignettes about support, about service, about disability and about ableism.

Several years ago, working in Ireland, I was teaching people in their early 20's about sexuality and abuse prevention. All the participants had Down Syndrome. At one break I referred to a young man as 'just a kid.' Now I did this because I was way older than him, I meant no disrespect. But disrespect was taken. He turned on his heel and stated clearly and loudly, "I am a man!" I felt the slap he intended. My usage of that word in his presence, my calling him that word, ignored a lifetime of being considered 'a big kid' and having his adulthood diminished. That was the starting point of me really looking at whether or not I was able to see people with disabilities as adults.

When it came to writing some vignettes for filming, I sat down and thought about a variety of situations. The theme of adulthood, and asserting adulthood kept coming to me. I remembered speaking to a couple with intellectual disabilities who were having trouble in having their relationship recognized as legitimate. It was called 'cute' and 'sweet' and there were a lot of subtle put downs. They felt like they were treated like two kids in kindergarten that got a crush on each other. He joked, "If they only knew we fucked." We all laughed.

Hence, the video.

I am not unused to controversy. Over the course of my career, I have been the cause of much of it. Being pro-sex and pro-adult at a time when that was not a popular view was a bit of a rough road. Some of the reaction to this reminds me of that.

Some will say they are offended at the language.

Some will say they found the use of the language in that situation rude.

Most won't identify the patronizing tones of the women commenting on the couple who were right in the midst of othering the couple as maybe needing to be brought up short with the fact of the adulthood of the couple in question.

Advocacy against the subtle and not so subtle ableism that rides behind and against adulthood, sexuality and the right to be respected and it cloaks itself in words that turn the everyday into clinical terms 'inappropriate' the word that has been used to bludgeon people with disabilities into submission, 'unprofessional' another tool to target those who work towards freedom and respect for the people they serve.

But in the end.

I think the video is funny.

I think the video makes it's point.

I think the actors had a blast making it.

I'm good.

Tuesday, July 24, 2018

Ruby's Ooops

Diversity!

Difference!

Disability!

These words have been in my vocabulary for a very long time. I live those words, I love those words. I think each of them as something that adds to the very fabric of what we call community.

I notice, particularly on Facebook and other social media, that the call to express your truest self, your deepest self, your unique self, is strong. There are memes about each of us being different and these are presented either as funny, but serious, or as assertive and aggressive. Either "Ha Ha Look at me, funny, silly unique me," or, "This is me, damn it, and you can like it or lump it." Those memes and the comments about them seem to really declare our love of our own difference and a claiming of difference.

Hmmm.

I have always thought that the deepest fear we each have is that we are deeply ordinary thus the internal pressure to find something, anything, that we can cling to and say 'This make me uniquely me.'

So I cry 'Difference' not with shame but pride.

Here's the thing.

Kids hear us.

Ruby has heard me blather on about diversity, difference and disability her whole young life. In fact everyone in her life has expressed an honoring of difference and diversity and disability. Those are the messages she has gotten.

And, exactly how well did that serve her?

She tells a story about going to camp with a bunch of kids. They did an activity wherein each child was given a piece of paper with one of the group members names on it and they had to write down a statement about what they liked about them. So the papers flew around the group, each child pausing, writing, and passing along.

For one of the children, Ruby wrote, "You are different," she read it again, she thought of it as a really positive thing to say, but in her ear was a warning, there was something telling her that this might not be taken the way she meant it, so she added "... in a good way." She felt a bit silly doing that because different was just different, not good or bad, but for safety and clarity she felt better adding those few words.

The reaction?

Not positive.

It seems we want to declare our own difference, we may not want it pointed out.

But, then, why?

If we truly live a mile past shame's house, then difference is just difference, something to be honoured and claimed. But many memes fall apart when tested in the real, not virtual, world.

Difference is not honoured on the mean streets of our community.

Difference is a slur used to belittle others.

In the safety of the virtual world, it's what gives us cache.

How sad.

It's the real world that needs to claim the difference that each of us have and in the real world we need to claim who we are.

Differences and all.

Go ahead and call me different.

I'll thank you for it.

Monday, July 23, 2018

Joe

Yesterday evening Joe did something, that he always does, and it annoyed me as it always does.

But lets start with the morning.

Two nights ago, the day before yesterday, Joe sat down on the side of my bed and told me that he had been experiencing shooting pains just under his rib cage for several days. I lay there, incapacitated by the news and the realization that he'd not mentioned anything of the sort for all that time, listening to him describe deep, sharp, pains that were almost unbearable and which had been increasing in frequency.

The reason he had told me was that, as we had the girls for the weekend, he wanted to go to emergency on Monday. We had planned to go to the ROM spider exhibit and the kids were looking forward to it. He thought the next day we could go to the hospital.

That's not what happened.

I called Marissa, we arranged getting Joe and I to the hospital and back. She would come straight from her over night shift and pick all of us up and drop us off and come back with the girls to get us once we were done.

After checking into the hospital and moving from waiting room to waiting room, Joe had been down for three tests. On our way back from one of them, I heard the nurse, on the phone, arranging yet another test, a big, expensive one. My mind went into deep panic. Let's not kid ourselves, I was panicked from the moment he spoke to me. I am the one that gets sick, albeit not for a long time, in this family.

We waited again for the final test and were told that we'd see the doctor in about an hour. By then we'd been there for about 4.5 hours. We chatted and talked like we were waiting for a movie, met and chatted with people in the same waiting area as if this was one big social event. But it wasn't. It was our way, all of us, from keeping worry at bay. It didn't work.

I can't worry small stuff, I worry big stuff only. I'm good at catastrophe so that's what my mind automatically does. My tension goes through the roof and the pictures in my mind are drawn from every medical show I've ever seen.

Finally we were called into a small area and Joe's going to be fine. It's nothing serious and we went away with a bit of advice and a prescription.

It was done.

I fought tears for much of the day. The sense of helplessness and the realization that I could do nothing to help combined to grab a cold fist around my heart. It took a couple of hours for me to calm down. Joe too relaxed and we had a fun evening with the kids.

So when Joe did his annoying habit that he's been doing for years, I realized, I'm glad he's with me, annoying me, that's the best possible outcome.

________

PS our hospital was wonderful in the way they reacted to us being a couple and being married. Once that was established there was no question about me sitting in, accompanying Joe to different parts of the hospital for tests, it was all good. We both remembered the days when LGBT people could not visit their partners in the hospital because they weren't family. We were recognized and treated as a legitimate family from the moment we arrived. Thanks to Southlake for that.

Friday, July 20, 2018

Phone Calls

So we're planning a trip, an actual vacation, and I'm getting myself familiar with the area from a visitor's perspective. I've been everywhere that I'm going before, but always for work, this time is for fun. Any of you who use mobility devices know that travel for fun is, quite simply, work. Websites still refuse to mention accessibility for the most part, or if they do it can be really hard to find, so I have to make a lot of phone calls. Let me present one of the calls to you.

Hi I'm calling to find out if your attraction is wheelchair accessible.

Yes, it is.

OK, to be clear, I'm actually in a wheelchair. Will I be able to get in all three of the attractions.

No.

Which one is wheelchair accessible.

Well, none.

Why did you say it was accessible?

Because I didn't want to make you sad.

And another:

Hi I'm calling to find out if your site is wheelchair accessible.

Yes.

So someone in a wheelchair can get in.

Yes.

You are sure.

Yes.

Can you list the attractions that I can actually get into and enjoy.

Well, there aren't any.

But you just said ...

... (cuts in) it's wheelchair accessible, you can roll around the attractions but you can't use them. But we sell our wheelchair customers a lower fare ticket because you can't use the attractions.

But I can watch.

Yes.

So you have a 'Voyeur" ticket price.

Well, I wouldn't say that.

You also didn't say that it wasn't accessible.

It is sir, you can get onto the grounds you just can't access the ...

(sound of me hanging up)

That, right there, those two calls, that took my energy for that day, today, I'll try some more places. I wish disabled not welcome places just say that on their websites, a little wheelchair person with a slash through it, this is my time that you are wasting.


Wednesday, July 18, 2018

Dust

From my eyes, the view is quite nice. I see my life clearly. I see purpose. I see love. I see meaning. From my eyes, I see straight ahead of me, I see the journey that I'm on, I see the battles to be fought, I see the joys to be had, I see moments of play, I see moments of frustration, and they are all headed my way. From my eyes my life is just my life. I'm lucky to be happy with it. From my eyes, I see what tasks were crafted for my hands only. What a privilege.

It startles me what so many other people see, when they see me. When they look into my eyes they don't see the reflection of journey to come, they see the reflection of something much different, much sadder, much lonelier. When they look at me they see a body and a chair. When they look at me they have their own narrative about what that means. They have assigned that image unshakable meaning.

"So sad that you are confined to a wheelchair, it must be so hard," said to me by someone who knew that I lived in Canada and that, at the moment, was in another country. That's not very confined. They had never left their state, not gone but 50 to 60 miles from where they grew up. But in their narrative, I'm confined. It suits them better for some strange reason. I try to explain the wheelchair as a vehicle for liberation. I meet dead eyes.

Watching a clip on Facebook of a young girl who is an astonishing gymnast. She has one leg and uses a prosthesis to enable her to participate. The narrative used to present her was that she hasn't let the prosthesis stop her from accomplishing her goal. I harrumphed at her story being stolen from her. The prosthesis exists to make her dreams possible. It does nothing to hold her back. Without it she'd not be doing what she does. Why is her journey and her story not see from her eyes.

What we see, as disabled people, when we see our lives, seems to stand in harsh contrast to what people see when they see our bodies, our disabilities, and enabling adaptations.

Part of the reason I write this blog is simply to remind myself that my journey is my journey and my life is my life. To remind myself that I don't live in the reflection of another's eyes, but I live in the world I see from mine. 

We have barriers, as disabled people, both attitudinal and structural, but we also face barriers when trying to tell our own stories, to have them heard and understood. We have been mythologized into sad creatures who do well to gather dust. As we fight for a world that's accessible we also have to fight to be seen, really seen, and to be heard, really heard, because it matters that we are real, vital, people who never, ever, ever, need dusting.

Tuesday, July 17, 2018

Feeling

After seeing that man with Down Syndrome take control of a situation wherein unwanted touch and belittling attention was plied on him, I left the situation feeling ...

and that was hard to say ...

... don't yell at me but I was inspired ...

... I was also really moved by his steadfast refusal to be the 'happy, huggy, Down Syndrome' guy they wanted him to be.

... I was impressed at the mere idea that someone had taught him these skills and ensured that he was able to use them in the real world.

All of those were true.

But that wasn't it. Deep down, that wasn't it. I sometimes have to go past my brain which tells me what I saw and assumes what I feel and get down into where my feelings generate.

I felt stronger.

That's it!

I felt stronger.

This is something I think we can do with each other as people in general and disabled people in particular. Seeing another's strength, hearing about it, makes us stronger, as an individual and as a community. You realize that that couple may never approach a person with Down Syndrome with the certainty of a 'hug outcome' again. Rah him He made his community stronger. He made my community stronger. And yes.

He made me stronger.

Tell stories of strength.

Create narratives of power.

Acknowledge reality but hammer it home when a triumph comes your way.

I need to hear it.

We all do.

Monday, July 16, 2018

A Man At Work

Just as we were finishing our lunch and I was popping the last of the burrito into my mouth, an employee came into wipe down the tables. He was quiet and unobtrusive and I didn't notice, either by his behaviour or the behaviour of others, that he had Down Syndrome. He just quietly and efficiently went from table to table to table.

Most of the customers seemed like regulars and took absolutely no notice of him. I can't emphasize the degree of welcome and acceptance that comes with anonymity in carrying out acts of everyday life. He was just doing his job. They just let him do his job. Several nodded to him, he nodded back, but that's as far as it went.

Then into the food court comes a young woman, with her boyfriend, who noticed him big time. Suddenly he was surrounded by patronizing, childish tones about what a good job he was doing and about how proud they were of him. He looked mortified ... not pleased to be centered out at all ... mortified. When the woman went to hug him he stopped her.

"No," he said, "I'm at work, you are a stranger."

She pressed on and he said, "No, I am a man. I am not a child."

They were, predictably offended. They told him that they were just being nice.

He said, and shock ran through my soul, "It doesn't feel nice, it feels disrespectful."

Then they were gone. During this whole thing, several in the food court turned to watch, it seemed like they all had his back, but they didn't interfere, they let him handle what came his way.

One of the women in the food court, one he had nodded to, fist bumped him on the way out.

Then he went back to his job.

Quietly.

Efficiently.