Monday, October 23, 2017

Joe, The Email, And What I Have to Say

Today is Joe's 65th birthday. We have been together for all but 16 of those years. Our lives have intertwined in ways both planned and unexpected. He has earned every grey hair that he has. His work often goes unacknowledged but his commitment to the cause of disability rights and civil liberties is unrivaled. He is, frankly, an amazing man.

What I'm going to write about today stems from a place of some anger, however. I received, yesterday, an email. The content is unsurprising, I've gotten this before, but maybe because of Joe's birthday, maybe because of our years together, it struck me twice as fast and three times as hard. The email stated that I should 'stick to disability' in my keynote presentations because people have no choice but to be there and when I mention Joe, as my husband, I am making a statement that makes some people uncomfortable. The writer said she found it difficult to hear my message because of the white noise of my sexuality getting in the way.

I want you all, and her in particular, to know that Joe and I have long talked about my lectures and about our joint decision to mention our relationship, long before marriage was even thought about as a possibility, in every talk that I give. Every. One. Joe fears that someday someone will pull out a gun, I know that's a possibility but I think a small one. Our decision was made precisely because we wanted it to be clear, to any other LGBT person in the room that they weren't alone. We both know what it is to be the only one in a room, we both know how lonely that can be. I know specifically that in our field agencies have a dreadful history regarding LGBT people often attempting to purge us from the workforce. This still happens.

Because of what I do, I hear a lot of keynotes and a lot of session presentations. I have not kept data but I'm willing to posit that nearly 100 percent of heterosexual presenters mention their wives, husbands, boyfriends or girlfriends. They do it casually as if they don't notice the privilege they have, in that moment, to not fear the reaction. The blithe way they don't seem to realize that they won't get an email telling them to shut up about their lives and their loves. They also don't know that they are signaling to every LGBT person in the room that their relationships are allowed air time, that their relationships expect to be met with welcome, that their relationships are valued. I'd love one day to hear a heterosexual presenter say something like, "I know I've mentioned my husband a couple of times and I want you to know that I am aware that there are people here who are not free to speak of their loves or their lives and I acknowledge you and I support you in your fight for equal time." But I'll wait a long time I suspect.

Privilege is like that. It doesn't notice itself. It doesn't acknowledge itself. But it loves the freedom and power it has.

So, I will continue to mention Joe here on this blog, there in my lectures and anywhere I wish. If that makes you uncomfortable, you need to look at yourself and your attitudes not request of me, silence.

I love Joe.

He loves me.

I'd love those two statements to be purely personal without a hit of politics. But, for now at least, they are both. I know this because I still have LGBT people come up to me after a lecture and wait until they are sure their comment won't be over heard and they will whisper, "Thank you for being openly who you are," and many walk away quickly wiping tears.

It can be hard being so alone.

In a room full of people who say they care for people.

In a room full of people who say they believe in inclusion.

In a room full of people who say they believe that all means all.

In a room full of people who trim the edges off all and for whom inclusion for some and exclusion for others.

So, it's Joe's 65th birthday. And I get to spend it with him. I get to continue living the life we have together. I get to sit quietly with him, laugh uproariously with him and I get to continue to make the same silly joke with him that we've been making for 49 years.

Yes. You may have heterosexual privilege.

But I have the privilege of living with and loving Joe.

You have no idea how much better that is.

Happy Birthday Joe!

Sunday, October 22, 2017

Joe Went Swimming

Joe arrived back in the hotel room saying he'd had a good swim. He hopped in the shower and came out dressed in his housecoat. There was a story that he wanted to tell me. I turned to listen and I saw his face and knew immediately that the story he had to share was important to him. I waited.

He said that when he got down to the pool the first thing he noticed was a bright red wheelchair. It was designed to be pushed and the seating had been specially fit. It was parked, waiting, off to the side of the pool down where the top of the ramp into the pool was located. In the pool was a young man of about 40 and with him was his daughter a woman with Down Sydrome, a physical disability, and a pretty significant intellectual disability. He was holding her up, helping her float, and walking around the pool. She was making happy noises and slapping the top of the water with one hand.

Joe isn't someone who jumps into a pool. He likes the ramp because it allows him to slowly adjust to the pools temperature, he finds most hotel pools cool. His trip took him by father and daughter. Joe said hello to both, the father, a little surprised that both had been addressed, introduced himself and his daughter and Joe did the same. Then, Joe began swimming. He's a lane swimmer and he found a lane, marked it with invisible lines and began to swim.

At the deep end, he stopped to catch his breath. The door opened and a small group entered, 5 adults and 3 children. The kids headed towards the pool, ready to jump in when one of the parents spotted father and daughter. A sharp cry, "Stop, get back here." The dad, with his kid, stopped and saw them all gather together and there was such pain on his face when he knew that he and his daughter were the subject of discussion. Do they want to get in the water with someone like her, someone so different. He turned and said something to his daughter and continued walking around the pool, holding her up.

After a few minutes they decided to use the pool anyways. The kids were excited and leapt in. It took a few minutes but soon everyone was in and everyone was having a good time. The child who was different was no longer noticed, no longer a subject of concern.

That a father loves his child, that a father provides amazing and exceptional support to his child, is not noteworthy to me. Parents love their kids. Parents of kids with disabilities do the same and I refuse to believe that it's 'inspirational' to love a child. What struck me, from Joe's story, was that the father, seeing the discomfort of others to his child being in the pool, didn't cede space, didn't pack up and leave, he understood that his daughter wasn't done. She was still slapping at the water and making happy noises. He stayed because she wasn't done.

Perhaps it was that the noise in the pool exploded at the entrance of the parents and children, but about 5 minutes later, she began to squirm in his arms and he leaned down, kissed her on the forehead and carried her out of the pool and wrapped her in a towel before setting her in the chair.

In the midst of prejudice he had held her up.

In the midst of discomfort he had held her up.

In the midst of prejudice he had held her up.

That dad's willingness to let his daughter's desires, not the reaction of others, determine what happens next, makes him a powerful advocate for social change. Being where you belong before people understand that the belonging belongs to you, that's an act of rebellion.

She is safe in his hands.

May she be safe for the rest of her life in the hands of others.

Saturday, October 21, 2017

Brussels Sprouts

Last evening I made one of our family recipes. We have several of these. Recipes that were developed based on opening the fridge and seeing what was there and, from that, throwing a meal together. Sometimes a magic happens and the meal joins the list of our comfort foods. Food that tells us we're home, we're safe and we're together. We've been on the road a fair bit and we have a fair bit to go, on the flight home I had a craving for what we call 'cabbage roll casserole' even though it's made with Brussels sprouts rather than cabbage and even though it's layered not rolled. We've been making this since someone gave us a big bag of sprouts nearly thirty years ago.

It's a bit of a complicated recipe, simple to make, but it involves chopping and steaming and frying and grating before assembling. I started by trimming the sprouts and then I was off. We have this several times a year and the recipe is firmly in my head so there was no need to checking or reviewing there was just doing. I got into the rhythm of the process and flew around the kitchen getting what I needed, getting things out of the fridge and then putting back what was no longer needed. At the same time we needed to make a different meal for the girls, open faced grilled cheese, another home grown recipe, and that needed to be done.

Over the course of cooking, first Joe, them Marissa, then Ruby and then Sadie joined in, each doing different parts of the preparation. It was organized pandemonium and I was right in the mix with everyone else participating as an equal member. An equal member is a necessary member, someone who's work made the end result possible. All of us had our roles and our individual tasks, and we all did them.

Somewhere in there I realized that I was having fun. The bunch of us in the kitchen, the bunch of us talking, laughing and working. Ruby and Sadie came up with an experiment they wanted to try with their sandwiches, to see which way of putting on the cheese would taste best, so they did that, loving that their suggestion was greeted with a ' great idea' (because it was) and then just doing it. 

This is probably a very ordinary scene for most of you. But for me, it's still extraordinary. I'm still getting used to the gifts of living in an accessible space. The fact that I can use my kitchen means more than being able to prepare food, it means that I can be a part of something bigger, something better, something meaningful. It means that my belonging isn't just a conceptual idea it's a physical reality. It means that when I am remembered by the girls in the future, they will remember me, now, as someone who worked beside them, rather than someone who sat in the doorway to the kitchen and couldn't join in.

Accessibility is more than just a space to use, it's about being able to live freely. There was a moment, last night, when the girls were on either side of me determining the ketchup, deli slice, cheese ratio, when my soul felt deep gratitude for finding, after 11 years of being an outsider in my own place, home.

Friday, October 20, 2017

It Doesn't Care

I'd just finished a really good breakfast at one of the eateries in the airport and were preparing to get up and go to the gate. I asked Joe if he wouldn't mind, I always finish first, if I rolled back to the accessible washroom to ensure the tanks were dry before getting on the wee plane. He just happily continued on with his breakfast then as I took off.

I had just come to the door of the accessible room, one of those separate from either the men's or women's bathroom, when the door opened. A non-disabled man stepped out of the washroom and as soon as he saw me he was full of apologies. But none was necessary, he was a transgender man and I knew that for him, this bathroom meant the same as it did for me, a safe place to go when you need to go. It broke my heart that he couldn't simply go to the bathroom that matched his gender. I don't know why he made the choice he did, safety probably, but there may have been other reasons as well.

He was explaining that he knew the washroom was primarily for disabled people but that he had chosen to use the washroom because, and here his voice faltered. Just for a moment he couldn't speak. Just for a moment I saw how hard the world he lived in was. Just for a moment I got a glimpse of the weight of prejudice that he carried on his shoulders. Just for a moment.

All I said was, "The best thing about these bathrooms is that the toilet doesn't care who pees in it." He looked at me, and I knew he saw a cisgender man of a seasoned age, disabled or not, he couldn't predict how I would see him or react to him being in 'my' bathroom.

But it's not my bathroom.

Is it?

And I wanted him to know that. I know what it's like to have people deny me the space I need. I know what it's like for people to wish me away from public space at all. Disability reveals people's character almost instantly. It's possible to really learn the depth of people's prejudice and anger at the mere idea of difference. So I don't understand what he experiences on a day to day basis but I know what I do - and that gives hint enough.

He thanked me for understanding. I thanked him for his thanks but turned it down. "The world would be a better place if we all just learned to share space, don't you think? That's all I did, and you don't have to thank me for it."

"The toilet doesn't care, does it?" he said and laughed a bit.

"Well, when I sit on it, it complains a little," I said, "but no, it doesn't care."

"Take care of yourself," he said.

"You too," I said.

My the world, one day, be safe for all of us.

Wednesday, October 18, 2017

The Key Didn't Work: a question

So much of my life as a disabled person revolves around bathroom issues. Is it accessible, can I get into the stall and close the door, how heavy is the door into the bathroom - will it break my footrests, can I use the toilet, where are the bars, and the like. Then there's the need I have to simply not being a jerk and not thinking my disability needs trump anyone else's need. It's a physical and emotional and cognitive challenge just to get around, just to use the toilet, the most basic of needs.

I'm staying in a wonderful hotel, with an amazing room and welcoming staff. The public washrooms though aren't so great. Many I can't get my chair in the stall and none are good for going number 2, for that I need to go to my room. I can make this work.

On our first day here, we checked in early and then used our time differently. Joe went to pick up beer, I went to the gym. The gym has some accessible equipment and I really wanted to get some real exercise in. I'd done about an hour work out and then had to go to the bathroom. The key card did not open the bathroom in the gym and I was afeared that it wouldn't work in the room either. I headed downstairs with a bit of urgency.

There were hundreds of people checking in and the line up were long. I knew from the morning the the concierge was able to check people in so I went to his desk. There were three people in front of me. I had to go to the bathroom, I couldn't use any of the public bathrooms and my key to my room wasn't working. I'm getting increasingly panicked.

The women in front of me all looked very nice. They all looked understanding. But they also looked tired from travel and that they'd been patiently waiting their turn. I had to fight down the urge to ask to just get my key card redone so I could go to my room and thus go to the bathroom which I really needed to do.

I don't like, and I know you won't believe this, talking about my bathroom needs with real, in the flesh, strangers. I don't like the idea of them thinking that I'm thinking that my need is bigger and more important than theirs. I don't like the possibility that they may think I'm using my disability to get to the head of the line. I don't like any of those things, but mostly I don't want to be thought a needy jerk, a man who puts himself before others.

So, I waited my turn. With moist eyes I told the concierge what it was I needed and it was fixed quickly and I was up in my room in moments. Thank heavens.

I've faced the bathroom issue pretty much every day since becoming disabled. It's the balancing act I'm wondering about. Do any of you have issues when needing something disability related, that non disabled people don't worry about - like bathroom access, and worrying about how to deal with the balance between your needs and the needs of others?

Tuesday, October 17, 2017

Conversations With My Penis

Today I realized, with some urgency, that the inside my head talks with my penis have really changed over time. When I was in my teens the conversations went like this:

Hi, I'm here looking up at you, wanna play? Wanna play?

No, bad penis, bad penis, I'm in public.

Come on, come on, it will feel good. You like to play.

No, stop it leave me alone.

Now that I'm nearly 65 the conversations go like this:

Gotta pee, gotta pee, gotta pee.

I'm in the line up for security, wait a minute.

No, no waiting, gotta pee, gotta pee.

Alright I'm through, I'm on my way to the toilet.
/
NOW. How about I go a little now?

NO Wait ... Shit.

This, this, they never taught me in sex education. This, this is why you need to learn about your body across the lifespan, not just when you are young. Excuse me while I go change.

Monday, October 16, 2017

Zipped Lip

Some of the things I haven't said on my travels this year:

To the woman working for housekeeping at a hotel:

Stepping back into the room, to give me space, when I'm pushing by the cart in the hallways isn't helping.

To the guy who looked terrified at the gate when I pulled up:

I don't want to sit by you either buddy.

To the woman working at the doughnut shop in the airport:

Yeah, really, a fat guy just ordered a tea. It's what I want not a miraculous act of restraint.

To the airport wheelchair assistance person:

Really, I know what I can and can't do, if I say I can push myself, I can. I know my body better than you do.

To the hotel valet parking guy:

I don't care that I pissed you off when I asked you to leave while I got out of the car. If you want a show, buy a freaking ticket.

To the woman who asked my about my diagnosis:

It's rude and none of your business. No I don't care if you really want to know.

To the man whose teenager made a pig face at me that you didn't correct:

Great parenting shows itself, you've raised a mean child, you may not get it now, but you will.

To the mom balancing two kids in either arm:

It doesn't lessen you for me to let you go first, I'm in a chair, you could drop precious cargo.

To the clerk who kept trying to get me to wave back as I rolled by:

We don't know each other, okay? You aren't Jerry Lewis and I'm not your kid.

To the people who just walked on and went about their day whilst in the presence of disability:

Bless you. Bless you. Bless you.


Sunday, October 15, 2017

Two Queens and and King

I written about this before.

It really worries me.

We'd just got off a plane and were heading towards the luggage area. A man was coming towards us, about our age, he was walking quickly to get to the gate for the departing flight. I said to Joe, after I spotted the accessible washroom, "Hey would you mind checking to see if the door is locked?" Before Joe could move, this man, who had overheard my question, had assumed I was asking him. Annoyance crossed his face at having been asked to do this but he started to go to the door!

I called out, "I wasn't asking you!"

By then Joe was on an intercept course and the guy, looking relieved, said, "I thought you were alone and were asking me."

All I said was, "I'm not alone."

I could have added "And  even if I was, I can get in on my own, there is a door opener for easy entry."

This happens all the time.

I'm writing about this one because, really? I'm going to ask a stranger for help with going to the washroom? He saw Joe and I together ... no, I've said that wrong ... even though he saw Joe and I together he assumed that I was alone.

The natural state of disabled people is alone, friendless, unloved and unsupported. Isolated people who live isolated lives waiting for friend death to claim us.

Yes, there are people with disabilities who live very isolated lives and that isolation relates to their disability. I know that, I know that it's an issue of social stigma and prejudice and barriers to full inclusion. I know it's because people with disabilities may need to socialize in different ways with different needs. I know and have worked on this issue for most of my years as a professional in the disability sector. I know.

But loneliness is not the natural state of any human being.

It may be chosen, but for the most part we are social beings.

That I can't be seen in relationship to another person when I'm out is astonishing. That same day, when the man thought that I had asked for his help ... we checked into the hotel. I always mark, when I reserve a room, that there will be two people in the room, but the clerk, like most do, prepared only one key for the room and had to be asked for a second key. "Let me see if I can change your room to two queens."

I was tired, and still pissed off from the guy and the washroom. I responded, "We ARE two queens and we really want a king."

Saturday, October 14, 2017

Public Space

Before we went down to the gates where the smaller planes are docked, we were pushing over towards the elevator going down. To get there we had to stop and negotiate the chair and our carry on luggage around a group of three men, taking up a fair bit of space, talking and laughing with each other. No big deal, this happens in airports all the time. At the elevator I wondered aloud if there would be accessible toilets down in the gate area. Joe quickly volunteered to go check and I stopped, with lots of space around me, to wait for his return.

I glance up from checking my phone for email and see an airport employee striding towards me. To get to me he also had to step around the three men who had spread out even more to accommodate the large gestures they used when talking. They were animated about some sport or other and having a great chat.

So why is this airport dude headed towards me?

As he approached he put his hands out, as if grabbing the handles on the back of my chair, I suppose an indicator that this is what he was going to do. "Let me help you get out of the way," he said.

Out of the way.

I am in the way.

There is space on either side of me for a group of 10 to pass and I'm in the fucking way.

I grabbed my wheels, and said, "I'll move when you make them move," releasing one wheel so I could point at the group of three men taking up much more space than I was and in doing so requiring people to actively have to get around them. In my area, not one person even had to slow, but I was in the way.

"I don't mind helping you," he said.

"I do," I said, "and I'm not moving until you make them move. Why do they have more right to space than I do? Why am I in the way and they are not? Let me ask you are you a bigot regarding people with disabilities in public space?"

I was calm but firm.

And no fucking way was I going to move.

And.

You know what.

I didn't.

Friday, October 13, 2017

Thunder Bay And My Chair

So, here's what happened. I rolled into the office and as I pulled into the elevator I both heard and felt whatever holds my front right wheel nearly disintegrate. Rolling to my office felt a bit like hobbling like I did in my youth when I severely sprained my ankle. I was panic-struck. I have a lot of travel coming up, including a flight two days hence. I had someone take a look at it at the office and he thought he could fix it the following morning. As hard as he tried, he was unsuccessful but said that the wheel would definitely stay on but it would be wobbly.

I did a Google search in Thunder Bay and found a wheelchair repair place, a branch of the one I usually use, Motion Specialties. I called them and described my problem to a really nice woman named Terry and when I told her what time we were to land the next day, she told me to come on over and they'd take a look at it.

That's what we did.

I stayed in the car and Joe took in the chair. They'd need, I thought, to turn it over to look at the wheel and that would be hard to do with me in the chair. I suggested to Joe that I could call from the car to talk to the repair person or, if it was easier, they could come out to me. Dan, the repair guy, chose to come out to speak with me. It's a bit hard to describe, even here, what my exact concerns were, given that the chair isn't made any more and certain difficulties I have with the chairs that are currently on the market and why I needed things done in a particular way and how I wanted him to be making decisions as he moved forward.

He listened, to understand, not to question.

That is incredibly difficult to find in a person generally. It's even more difficult when bridging the disabled/non disabled communication gap into which experience battles it out with expertise. When he left I felt he had truly understood my concerns. Even if he couldn't fix it, the exchange had been worth my time.

A few minutes later he was back with an update and wanted direction. I knew what I wanted him to do, but it would be time consuming and there was an easier, although more temporary fix. He'd been so decent that I felt that I owed him an honest answer. So, I asked him if would be possible to do something, let me try it and if it doesn't work to undo it and do something different. He got it, understood why I made that decision, given the fact that he'd listened in the first place, and set off for trial number one.

I turns out that the more permanent fix worked and we didn't need to do more.

I'm not done yet.

When paying I asked them about purchasing something that would make my brakes really grab the wheel. They had become slack and the tires are worn down. Terry went and got Dan and he looked at it and said, I don't think you need to by anything, there's give here I'll grab my tools and fix it. So there in the office the breaks were made like brand new, no extra charge.

Joe and I hesitated to call this miraculous but to find a place far from home that can fit you in during the time you have, and have the parts, and the ability to fix it while you wait in the car. It took less than an hour for this all to happen.

This is my formal shout out to Dan and Terry at Motion Specialties in Thunder Bay.

Thank you both for listening, taking my concerns seriously, and helping me out with both kindness and welcome. I appreciate it way more than you can know.

Wednesday, October 11, 2017

Right Now

My wheelchair is broken.

The front right tire needs fixing.

I am frozen.

With worry.

My focus.

My life.

Is on hold.

Can it be fixed.

And when.

There is never a good time.

To lose mobility.

My disability rises.

Slaps me in the face.

And reminds me.

That freedom is a wheel.

And wheels break.

Tuesday, October 10, 2017

Who Benefits?

I had decided to write this after Thanksgiving and not make it the post for that day.Here's why:

I noticed being noticed because I'm noticed all the time. But I was followed in a store by a mother and a boy of about 8. They were watching me grocery shop on Thanksgiving. Joe puts things in a cart, I put things in a bag behind me, then we empty my bag onto the cart for payment. It's a natural and easy process for us.

I had been over looking at the Tofurky roast when I noticed a 'new product' announcement for a Veggie Ham roast. I decided I'd like to try it and put it in the bag behind me. I turned the chair to face the boy who looked really, really, embarrassed. He didn't say anything but his mother's urging along with my curious expression brought the words out softly, "My mom wants to know if you celebrate Thanksgiving, being in a wheelchair and sad and all."

"Do I celebrate Thanksgiving," I responded. "Of course I do, I have so much to be thankful for. I told him that I wasn't sad to be in a wheelchair but that I was glad that I had one because I could shop like I was shopping. I asked him to guess why I was buying so much stuff. He guessed wrong, "Because you eat big meals?" I burst out laughing.

"That's part of it I said but it's because we have people coming over for dinner and my husband and I are cooking up a feast."

"You have a husband?" he asked.

That sent him feeling over to his mom, "He has a wheelchair and a husband mom, and he's not sad."

Would someone in a wheelchair celebrate thanksgiving? What a question. What assumptions made.

Yeah, we do.

Often.

The public perception of disability as a lonely, sad, life, is so strong and so enduring, I'm not sure why and I'm not sure who benefits, because someone does ... and it ain't us.

Monday, October 09, 2017

Happy Thanksgiving

Yesterday we went to play badminton. I played in my youth, in my days on two feet, and I wanted to try playing while sitting in my chair. We paid a few bucks and got our wristbands and then rolled over to the gym. It was full! I'd never seen it full before, but never mind, we were here, we were going in. Rolling through the automatic doors I noticed that the people there, playing, all could really, really, play. They, of course, noticed me the moment I came through the door.

The two people overseeing the courts welcomed us and the older of the two women got up and took the four of us over to where the rackets were kept and went over the rules of how the courts are shared. We got on right away as a group of four decided to take a break. I was nervous that I'd never hit the birdie and that this might have been a foolish enterprise. We all agreed that we'd play, not a game, but to see how many times we could get across without missing. Ruby said she'd play on my side because she wanted her and I to wipe the floor with Joe and her mom.

I can still feel the first time my racket hit the shuttlecock. I saw it soar straight into the net. But I had hit it and I was hooked. We played right until the last few minutes before the courts closed. Each of us took rests when needed and we played in odd configurations but we played and laughed and supported each other and made suggestions about how it might work better. 

We laughed, a lot.

We must have become boring to watch. Because midway through I noticed that no one any longer noticed us. We were just people on court having fun. The massive guy in the wheelchair managed to hit more times than maybe expected and no one minded helping when necessary. The story that they would have told, created instantly in their minds when they saw me, was rewritten. I had traveled the journey from a freak to a fellow - a trip I make a lot.

Yesterday was Thanksgiving Sunday. We went home to prepare a feast for us, Sadie came from a sleep over and was part of the celebrations.

We didn't sit and talk about what we were thankful for, instead we just enjoyed what we were thankful for.

If I had to make a list, just from that day:

I'm thankful I have people who are willing and supportive to let me try to do things I think I probably can't do.

I'm thankful that I have people who will walk into a room and get the second hand staring that they get on my arrival.

I'm thankful for people like the woman who welcomed us in the gym and who clearly wanted us there and wanted us all to have fun.

I'm thankful for whoever decided that there would be access to both the building and the gym where we played.

I'm thankful for the disability community that fought for the right to access, their contribution can never been forgotten.

I'm thankful to be part of a disability community that continues to teaches me that I have the right to public space.

I'm thankful that, in my heart, I have come to believe that the opinions of others aren't needed when considering doing new things.

And, of course, I'm thankful for cranberry sauce.


Sunday, October 08, 2017

Don't Even ...

Please.

Don't.

Don't tell me, in the tone you use towards a pouting child, that I need to understand that those were different times. That people didn't think about accessibility when designing houses, buildings or public spaces.

Yes.

They did.

And said 'fuck it.'

You don't seem to understand that the idea of accessibility isn't new. You know how I know? Because people with disabilities didn't spring up in the human population just a couple years ago. We've been around forever. Really. Forever.

Yeah.

You killed us.

You put us on top of mountains to die.

You locked us away in basements and attics.

But we've been here. And you know what we've been doing? Experiencing you. And you attitudes. And your barriers. And your disgust. And your superiority.

Buildings were built for access for exactly who they wanted there.

And we weren't part of their plan. We weren't part of their imagined customer base. We weren't the right sort for the right crowd. "It was a different time," is no excuse because it's the same prejudice, the same fear and, yes, the same hate. It may feel like a different time to you, but every time any one of us faces a public space where we are clearly unwelcome, barriers placed purposely in our way (yes you read that right) it feels like the same old shit.

Young men and women went off to fight wars, lots of wars, over our entire history. They came back, bloodied by war then beaten to submission by prejudice and exclusion. Cities build monuments to war heroes and then create public spaces that they can't access. Ever notice that the soldiers are always portrayed in monuments standing? Whole bodied? Without the slightest whiff of blood, or sweat, or rotting flesh?

Bumper stickers ask you to thank a vet. Maybe the best way to do that is to make it your goal that every veteran in every city lives as freely as you do. They bought you your freedom, maybe you could demand that they have theirs.

It's getting better you say.

You say as if it's a gift we should treasure.

I'll tell you this every fucking cut curb, every auto door button, every bar placed behind accessible toilets was put there because we fought for it.

It's not a gift.

Now here comes the part where you call me a snowflake and tell me that my feelings of exclusion at an event I really want to attend are lacking in understanding, on my part, of the world as it is.

I'm from Canada honey, and let me tell you, I know exactly the power that a snowflake has when it is accompanied by a storm.

Saturday, October 07, 2017

Bright Red Walker

We always get to the airport early. We like mornings, even sometimes very early mornings, so while it's not fun, it's not terrible either. Check in went smoothly and then we were off to security and then we'd pick up something for breakfast and eat it at the gate. We found a place to get something to eat and Joe carried it as we went to find a seat.

A boy about 12 was sitting in the wheelchair designated seats. In front of him was a bright red walker. I like those things because they are 'in your face' and are an outward sign of inward pride. He was very thin and had a face that easily broke into a smile. We nodded and then he went back to is phone and Joe and I munched out on our meal.

The area began to fill. 

I noticed them because I noticed him. He was nervously glancing up and to my right. I looked over to see four children near his age huddled together, looking at him and laughing. They intended for him to notice. They wanted their natural superiority known. Walking supremacists are as dangerous as any other variety. What they showed, however was simply that they were cruel. 

I've seen those faces all my life. I was angered that they were targeting a kid just sitting waiting for his plane. I looked around for his parents but I didn't see them anywhere. He was simply on his own, being where he was supposed to be.

Quietly, I turned my chair and rolled over a few feet. I stopped about where I thought that I blocked their view. They would have to stand to see him. I knew I was in the way of others who, if they wanted seats, they would have to step around me, and I didn't care. I stared at them. Really stared. In only a few seconds they got up and fled to another area of the gate.

I rolled back.

Why did I do this?

Because, though I will never know his name.

He's mine.

MINE.

And I have a responsibility to use the power I have to simply do something. "Doing Damns the Darkness" and action is needed more than quiet, passive, disapproval.

Let me make it clear. I do not tell you what happened because I want you to think well of me. I don't think that what I did was 'good' ... I think that baseline level of social expectation is to combat cruelty. Bullies would not be able to bully if boldness became the standard expectation of everyone.

I continue to believe that the community belongs to all of us, and if that's true there are things we need to do to ensure that everyone feels welcome.

Friday, October 06, 2017

The Life and Death of "the AV"


We called her "the AV."

Aunt Vesta passed away last night. I found out this morning. It was my first night home, I had gone to bed early, and I didn't find out until just moments ago when I checked my phone and noticed a call that I had slept through. The news was like a hammer blow. We didn't chat often the AV and I, but there was simply a comfort knowing she was there. And. Now. She's not.

We got to know the AV particularly well when she came to Toronto many years ago and stayed with us. Her husband, Uncle Val, had been flown from Alberta to Toronto to be treated in the hospital here. I remember being a wee bit worried about her coming because Joe and I had a one bedroom apartment and it was pretty hard to hide, as we did at the time, that we were a couple.

The AV simply had no issue with who we were or how we were. She had a heart big enough to embrace difference and make difference not matter. It's tempting to write that our difference made no difference but that wouldn't be true and it would diminish the AV's capacity to recognize difference, value difference and embrace difference. We both knew that we were welcome in her heart.

When Uncle Val was clearly very ill and the likelihood of him surviving his illness the AV asked us if we could find a minister for her to talk with. We called Rev. Brent Hawkes from our church, informing her that he was the 'gay' minister from the 'gay' church that we attended. She looked at us confused at why we were telling her. We called him. Luckily he was free and he came right away. It was well into the evening when he walked into where we were waiting in the hospital.

They talked for a long time.

She came away from that talk with renewed strength to get through the hard time of Uncle Val's leaving. She never told us what happened in that talk. She just said that there was a final gift she could give her husband and that she knew she had it in her to give him.

I don't know what that final gift was.

I never asked Rev. Hawkes because it was none of my business, and I knew that, and more importantly I knew he knew that.

There is a gift that I can give the AV.

It's a promise to continue to love her and speak of her.

They say there are two deaths, the first happens when you die, the second happens the last time anyone ever says your name. I think that time is a long way off. The AV had an impact on so many people.

In my lectures I tell a story about the AV and what she taught me that changed my practice. It's a fairly long story and I love telling it because when I do I can picture her and hear her voice and be surrounded by her laugh. And now, too, I know that her name will be spoken for a long time still.

I know you have gone AV but I know too, who you were will live on for a long time to come.

Thursday, October 05, 2017

The Gift: The Guy From Campbell River

When in Campbell River working, I met a nice young guy who showed me a safety sticker he had designed for a family who had a child with autism. It was a cool sticker that presented emergency information to emergency personnel how to best support the child in an emergency. It was done with care and with tact and with an amazing amount of discretion. I was impressed.

From there I told him my story of having my wheelchair being stolen from the gate of the airplane twice now, most recently a couple weeks ago when landing in Vancouver. He mentioned that he could make stickers for my chair that could, perhaps, help. The next day he came in with a set of three. I was thrilled, anything to make me feel safer leaving my chair and getting on the plane.

We put it on for our flight to Edmonton and they were on, of course, our flight home. We put one on each side of the chair and one down the inside back of the chair. That was the one that really stood out when the chair was folded. No problem with either flight. The back sticker is likely not going to last long because of the friction, or whatever, that is caused by my pushing myself, it's slowly loosening, but it doesn't matter. I have an idea now.

This guy, with no connection to me at all, simply attending the conference, had the generosity to make these for me, he refused payment of any kind, he just did it because he could, and, as he approached it, why wouldn't he. Me, I saw it differently, as a huge gift. Not just of the stickers, but of understanding, caring and action. Lots of people are good at the first two but not so good at the third. This guy, he had it down.

So thanks guy from Campbell River, you made my flight home so much better, I felt so much safer ... and 'safer' is maybe the biggest gift you can give anyone.

Tuesday, October 03, 2017

A Hero And A Reminder

I haven't been getting as much exercise on this trip as I'd like. I am pushing more than I do normally, but not enough to equal what I do in the gym. On Sunday we decided to go to a grocery store to pick up some things for the room. I told Joe that I'd be doing a full run through the store, up and down all aisles and a once around the store. He was good with that and we set off.

We parked and I pushed up the hill from the car to the store and then we set about shopping, Joe coming with me as I pushed the store. It was a big store but had lots of people so while I went a long distance there was a lot of stopping and a lot of waiting so it wasn't sustained in any way. When we were in the checkout line I told Joe I wanted more distance so I'd go out and then across the parking lot to the store next door. He said he'd return to the car to drop off the groceries.

I pushed along the parking lot again, pleased because outdoor pushing is a goal for me. It was a challenge with uneven pavement and a slope the whole way that had to be conquered. I got to where I needed to go up to and then on to the sidewalk. I pushed uphill to the curb cut, when I got there the curb cut had a real lip on it. It was almost enough to say, "Forget it buddy." But I used my feet and my arms to get over the barrier and then, oh my, the curb cut was steep.

I was pushing hard. As much as I tried one arm is slightly stronger than the other and I was listing to the right. But I was still making progress. I was about seven inches from the top. I was working really hard. And a woman came out of the store and saw me struggling.

She smiled a greeting and said hello. My hello back was breathless as I didn't stop with the pushing. I was inching forward, she walked slowly by me, giving me time to ask for help. I didn't, she didn't offer, and then, suddenly, I was on the sidewalk and pushing to the door of the store.

She saw me.

She opened the possibility for me to ask for help.

When the ask didn't come.

She didn't offer.

Isn't it weird that I'm writing about someone who saw a disabled guy struggle to get up a steep curb cut ramp and she didn't offer help and I see her as some kind of hero. Because I do. She allowed me the dignity of a decision. She allowed me the opportunity to finish what I started. She welcomed me without believing she knew what I needed.

A hero.

That so rarely happens. That when it does I am reminded that respect for me and for others with disabilities is possible.

Monday, October 02, 2017

Two Boys and A Kiss

We were talking a tour around Canada's biggest mall, in Edmonton, when we decided to stop for lunch. They have lots of restaurants but we really are fans of food courts and we found one, picked a spot to get food and loaded up our trays. We found a table and got into place. We notice another gay couple, in their early twenties, in the area and enjoyed watching the freedom they had to be there and be openly a couple. We watch with not a little envy, I need to confess. This is what we all fought for, and it's nice to see.

Some others in the area weren't so welcoming so our guard went up. I feared these kinds of bullies when I was younger, but becoming disabled and through that process discovering the courage with which I needed to live life has made a difference. Those two didn't notice but we were there and we had their backs.

They each got their food at a different vendor and the bearded one of the two found a table not far from where we were sat. He looked up for his partner, perhaps husband, and waited for his arrival. When he came to the table he leaned over and gave a quick kiss on the lips before sitting down. Most people smiled, which was nice, but weird that they did, they didn't smile when heterosexual couples did the same. But it's better than those who were clearly upset.

Now together and now both had food, they still didn't start. They both took hands and bowed and said a prayer over the food. They said grace before starting. This took everyone by surprise. There wasn't the smiles any more, there was a real look at the two young men. Like they suddenly saw a relationship, a loving, deep relationship, where before they had seen something 'cute' that was 'novel' and perhaps even 'shallow'.

Those two young men. They are change makers. I don't know if they know that.

But I expect they do.

Sunday, October 01, 2017

Dave's Unhappy

The automatic check in machine told me that I had to go to Special Services in order to get a gate tag for my wheelchair. A woman, working for the airline, said that she'd take me over to where it was and I asked if we could wait until Joe was back from returning the rental car. She said to just let her know. Joe arrived and I called out to her and she turned and left. We tried to ask several other employees how to find Special Services and they blew us off making it clear that they were busy helping their real customers, you know, the kind that walk. It was as if they were announcing that they didn't do special services so fuck off. Finally we found it, It's not in an easy place to find.

When we went in, I was asked how our morning had been, and I had lots to say. The woman stood listening like she'd been trained to but her face showed no interest in what I was saying. She then said that, now that I was done complaining, she would start the process to get us on our way. I stopped her and said that she could start the process by promising me she would bring this forward. Given that their space is difficult to find, people need to be willing to tell disabled passengers where it is. She said that she would tell the managers that I was unhappy.

"UNHAPPY?" I exploded. What on earth does my feeling unhappy have to do with any of this. I wanted her to tell the managers that their staff brushed off disabled customers as if we were unimportant and that able bodied passengers were the only ones deserving of their attention. I wanted her to tell the managers that disabled travelers, who have the most difficulty with mobility have to go way out of their way to find a place that cannot be seen until several turns have been made, need to have clear directions. We are not an inconvenience. She listened again with the patience of someone who went to training on how to listen and said that she would do as I asked without any intention on follow through.

I often advise disabled people to speak up.

But I am reminded that disabled voices, like disabled lives, are devalued and dismissed.

I know that my concerns won't be brought forward, but, my comfort is that it won't be because I didn't speak. I live, as a disabled person, in a world where I need to state my right to space and my right to service and my right to be a customer over and over and over again until I find one person who listens with care and compassion and who couples those things with a desire to make change.

They are out there.

But that wasn't who was on shift that day.

Thursday, September 28, 2017

Stoked

I'm just not getting the exercise that I typically do at home while I'm on the road. Unlike my gym, the hotel gyms don't have the same kind of accessible equipment. And, let's be honest, even if they did, it's tiring being on the road and I'm not entirely sure I'd go even if they had it. But, I've been missing it.

Two days ago, I set the goal of pushing myself from the venue to the hotel. It's a fairly long push, and, as sidewalks are always sloped, it's difficult. My right arm became sore from the effort about half way and I gave up with the hotel in sight. Joe got the car and we got home.

Yesterday, I knew the difficulty and I knew the obstacles so I planned a little differently. I planned to go into a store at the end of the outdoor mall and roll around a bit to rest my right arm and to give myself time to a breather. I did this and then headed out and down the parking lot to the street sidewalk and then pushed up onto it.

I was further than yesterday, I was dead tired, but I could see it. My pushing had slowed to barely moving but I was moving. When I got to the final curb cut just in front of the hotel, one which I'd done every day, it seemed impossible with the strength I had.

But it wasn't.

I was up and then in and then down the long carpeted hallway to the room. It felt wonderful. I had spent the day talking about self esteem and disability and the roll that acknowledging accomplishment plays in that ... well, I celebrated. With a cup of tea, but a celebration is a celebration.

The lack of exercise I've had, I'm relieved, hasn't taken away from my ability to do distance. But this was different because distance, outside, is very different than distance inside. This was a first for me to go this far, out side, on my own steam.

Thank heaven's my steam engine can still fully be stoked.

Wednesday, September 27, 2017

Shouting

We should have shouted.

The line up was really long. People had frayed patience. All of us had had long travel days. We landed in Vancouver and like a 100 other people needed a rental car. We approached the desk and asked for a specific kind of car that they had in their fleet and the guy behind the counter, when he saw me in my wheelchair, told us we didn't want that kind of car, it was too small. We said that we'd rented it before, it works perfectly and in fact because it worked so perfectly we had bought one.

He insisted that it wasn't big enough and refused to even look for it because, of course, he is the expert on my needs. We pressed him a couple of times but he didn't listen and gave us the keys to a car that was bigger and much better for us. We went to the car and I knew immediately that it was good to be a struggle. I need cars where there isn't much of a lip at the door for getting in and out. This one had a big one. I got in. I got out. But it was work.

We were tired, we'd flown for 6 hours and now had a 5 hour drive ahead of us. So we just left in the car. Right from the outset I had to brace myself for getting out. That lip seemed to get taller and the foot well seemed to get deeper. And then it happened ...

... I started to make different decision. Where normally I'd get out of the car and go in somewhere with Joe, I decided instead to stay in the car. I started every morning counting how many times in and how many times  out. As my legs tire it gets harder each time to get out.

Because he wouldn't listen.

Because we didn't shout.

But let's be honest, shouting may not have helped. It could have just made matters worse. The line up behind us was long and pressing in. Everyone wanted to be on their way.

We have this car for a few more days. I'm counting that down too.

Too often people with disabilities are victims of the expertise of others. Too often people who have no idea about disability claim to know more than disabled people do, and about their own disability.

No you don't know what I need.

I do.

I'm the expert in me.

Yesterday I so badly didn't want to get in or out that I rolled from the venue to the hotel. It's a long push, but some of it is downhill, I can't push there but I can push back.

Well, today is another day to tick off and soon we can get rid of this damn car and hope that at our next stop we get someone with ears working at the counter.

Sunday, September 24, 2017

Tall, Fit and Handsome

We were having breakfast. I had decided that I really wanted a big bowl of porridge, even though that's not on the list of things I should eat, and I was tucking into it. There were two people working the room, cleaning up tables after guests left. It was a busy spot. Both of them wore the company uniform and both were friendly and efficient. The worked together well, and joked with each other comfortably as they did so.

They were different though.

He was an able bodied white man who was tall, fit and extremely handsome.

She was an able bodied person of colour who was short, a bit pudgy and quite pretty.

Beside us was a group of middle aged parents with two teen children. Their conversation almost immediately went to the man who was working the room cleaning up tables. In essence they thought it was a pity that such a man was 'reduced' to doing such menial work. They said he looked like he should be in an office somewhere in charge of something important. Mom said, "What a disappointment he must be to his family."

None of them mentioned the woman. Not a word was said about her at all. They felt the work was beneath him but not her. She fit in their mind as being in her place. He did not.

When we were done he came over to pick up our stuff and we chatted briefly about the day. He was tall and fit and handsome and also quite charming. He carried himself proudly and clearly did not see himself as some huge failure and disappointment.  I found myself praying that he didn't hear the people at the next table.

How does it come to be that we judge people so harshly based on superficial characteristics? It happens to me all the time but I realized after this experience that I am so not alone with this, I get a constant barrage of prejudice because my difference is multidimensional which multiplies prejudice. But it's everywhere, if this handsome, tall, fit man has to deal with those who feel, without knowing him that his work is beneath him and that he failed in his quest of 'white man destiny' then I wonder if it is possible for anyone to go a day simply respecting everyone in their path?

I'm not sure it is.

What do you think?

Saturday, September 23, 2017

Ticked Boxes

All the boxes were ticked:

flat entrance
bars around the toilet
bars in the shower
doors wide enough to accommodate my chair
toilet on floor not hanging from wall

Those are my basic asks. This had been checked assiduously and everyone was confident that we were good to go. So we arrived at the hotel, tired from a full day lecture and a long drive. Rolled into the lobby to find that a wheelchair user couldn't get from the lobby to the room because there were three steps up to the elevator.

To get up to the elevator we had to leave the hotel, go back into the parking lot push uphill to the next door, the door they brought luggage through from large tour buses, and then push up the really steep ramp leading to the door. It was hard to do. I usually push myself and rarely ask Joe for help but I simply couldn't do the ramp. Joe himself had difficulty, even with my help making it up the steep slope to the door.

In the morning we went down for breakfast only to find that they had two huge luggage carts piled high with luggage and one cleaning cart blocking my way out. We moved the cleaning cart and then I carefully picked my way by the luggage cart really hurting my hand along the way. But I got by and I got out.

Then it was back into the lobby but something had happened to the door overnight and now it opened and closed quickly. I rolled back to the door because, again, the slope was steep and I had to use hands and feet to get up it. But the door would close just before I got there, the automatic sensor couldn't see me. So it was down and back up, down and back up, down and back up, the third time Joe stuck his foot in the door and held it as it pushed hard against his foot to close. But I got in.

I went straight to the desk, told them that I hated going into hotels through back doors and that if they had one disabled entrance and a car park full of cars parked in disabled bays they shouldn't be blocking that one door, I told them I had hurt my hand in trying to get by and that my hand was integral to my movement.

They stared at me.

Said not a word.

Just stared at me.

It is amazing what the privileged think is good enough for others. It's amazing no one though that it might be a problem for people having to use back door entrances. It's amazing that they call themselves accessible yet treat their disabled guests as second class citizens.

Let me give a hint. If what you think is good enough for others isn't good enough for you ... you are, without question a bigot.

Friday, September 22, 2017

Her Smile My Chair

We had to park very close to the front door of the hotel. There was little room for dropping off, the cut curb was extremely close to the door and the slope of the driveway made it both dangerous and daunting to attempt as an exit from the car. Just as we pulled in a woman, pulling a suitcase from the parking lot, gave Joe a really dirty look for having parked where he did. He had not blocked the door but she did have to step around the front of the car. Oh, well, people get upset for a variety of reasons and who knows what kind of day she'd had.

By the time I was out of the car and into the hotel she had been checked in and was long gone. I then went through the check in procedure, double checked about the accessibility of the room and then received a map of how to get from the lobby to the room. It was a large hotel and the room was not accessible from the lobby. To get there we were recommended to get back into the car and then drive down the fairly steep driveway to the second building.

I really, really, really, didn't want to get back into the car. So when I got out I decided it might be fun to roll down the hill, a tad risky, but fun. I am almost 65 but occasionally I get the 'testosterone-stupids' and they hit full force. I pushed off and headed down. It was a wild ride but I never once felt any real fear because I had really good control of the chair. I reached the bottom and then started pushing over to the room.

As I was on my way, pushing on the flat driveway, the woman who'd been upset at where we parked came out of her room. She saw me in the chair, I saw her face react to the realization that we had been parked where we were parked so I could have easy access to the lobby. She broke into a smile and wished me a good day.

Nice.

But, here's my thought.

Why did that matter? Shouldn't we all be just a little more patient with each other, a little more forgiving and understanding? Why does my wheelchair matter? There are all sorts of reasons that people may have parked there, up to and including, momentary selfishness. Who cares? There are so many things we have to deal with in our days that you'd think that the practice of giving and receiving understanding would be commonplace. You'd think that we'd all have a sense of proportion. Let me tell you if the worst thing that happened to me in a day was that I had to push around a car, I'm having an awesome day.

Anyways, her smile and my wheelchair interacted in such a way that I felt excused.

I didn't like it.

But if that's the worst that happens in my day ... it's a pretty good day.

Thursday, September 21, 2017

One

There is an idea about inclusion that I think needs to be examined. I also think the only people who can examine this are those who are out in the community working or participating in some way. Those who have been 'included.' More and more I believe that the end result of the movements towards community living and integration and inclusion should be evaluation by those who, firstly had no say in the development of the idea, and secondly, those who are at the mercy of other people's good intentions. The disabled voice is an important voice and it's the only one that can determine if what was done met their internal goals of belonging and feeling welcomed.

I went into a place where they had a man with a disability, both intellectual and physical, who was a ticket taker. When I came in, he spotted me and smiled, I couldn't get my chair around an entrance barrier so he came over and undid a clip that would let me in another way. I thanked him, gave him my ticket, which he ripped, gave back, and said, smiling hugely, 'you're welcome.'

On our way out he spotted us heading to the exit door. He took a quick look around and saw that at that moment he wasn't needed. I also noticed that the other staff in the area were all laughing and joking and he was seated quietly on the chair set up for him to sit on while taking tickets.

He came over and asked how I had enjoyed myself, keeping his eye on the door at all time, this guy took his job seriously. I told him that I had and he said that he was really glad. On his way back I said, "It's hard being the only one sometimes isn't it?" His eyes filled with tears and he nodded.

I understand that. I am often the only disabled person in a place. I feel, sometimes, so isolated and so alone that it takes my breath away. Seeing another disabled person, not even speaking to them, just seeing them, is a big deal. That alone reduces my sense of being alone.

I am glad he was there. I just hope that those who support him understand that the work isn't done. He's alone. Really alone. Yes, it's a job. Yes, that's wonderful. But he didn't have a job like others in the same place the others that were laughing and talking and making work a social experience. He sat on the edge of exclusion while a number in a column somewhere would count him included ... inclusion at work.

One is the loneliest number that there can ever be. 

I doesn't have to be.

But it often is. And all it means is that the first step has been taken, and many more are yet to follow.

Wednesday, September 20, 2017

I'm Reviewing The Situation

We were considering going to an area of town called The Old Mill Market and had nearly dispensed with the idea. These kinds of markets, in old buildings are often less than accessible and really frustrating for me as a shopper. So I went to a review site where customers can rate a place and write commentary. I was hopeful because there were nearly 100 ratings. I did a search for the word 'accessible' and when nothings showed up 'wheelchair and found, again, that nothing showed up. Not one review mentioned accessibility.

The front desk was our next shop and we were informed that, without a doubt the area was accessible. They explained that the name was misleading because it was where the old mill was but it was a fairly new development. Thus assured, we went.

When we got there we were met with a completely accessible experience. Although I never had to use the toilets so don't know about that, but all the stores I went to, I got into. And, most importantly, Joe and I spent time talking about things other than disability, accessibility, cut curbs and ramps. A nice break. We had a good time.

Got home and went to the review site and reviewed the area both from a shoppers point of view and from an accessible point of view. I used accessible in the title of my review and the word wheelchair in the body of the description of the area. I wrote about other things too, of interest to all readers, but I wanted any other disabled sod who wanted to find out if it was accessible to be able to search and find my review. We almost never went. We would have missed out.

Please, those of you who have the time and the inclination go to a travel review site and review the places in your own town from a disability perspective, write reviews when you travel. It doesn't take long and it's a way we can help each other out. Even if you don't have a mobility disability, write about your own personal disability experience for others with similar disability or accommodation needs.

We'll help each other and occasionally, a bad review of a place will change things. I had a hotel write a response and then talk to me on the phone, when I called as asked, and they completely altered how they did the barring in the bathroom and shower. They loved feedback from someone with a disability rather than from a consultant without one. So it can  make a difference. It's the power of social media to inform and to inspire change.

I'm beginning to feel like an advert so I'll stop now.

Tuesday, September 19, 2017

The Meaningless Chair

Back in my chair I pushed into the gate area through a wide doorway. There was nothing in front of the door, of course, nothing that would block the flow of a lot of passengers disembarking. Off to the side was a podium, the kind where they check your tickets and documents when you are being loaded on to the plane. Behind the podium was a tall chair, on swivel wheels. Again, it was well off to the side. No one was at the podium or on the chair. There was, however, an agent working the next podium over.

She must have noticed me out of the corner of her eye. I was, as I always am, the last off the plane. I'd been frantic moments before because my chair had disappeared in the hands of other passengers and it took more time than you might imagine for me to calm down about that. But I was pushing my own chair and getting ready for the long push to the luggage area when she saw me.

It would have been comical if it wasn't so entirely odd yet entirely expected at the same time. Some people just panic when they see a wheelchair. It might happen a little more often with me because of my size, but I know from other wheelchair users that it's not just the size, it's definitely also the wheels. So, she saw me.

She flew out of her seat.

She left behind the person she had been serving who gawked after her as she fled her post.

She ran over to the chair behind the podium that was well off to the side.

She grabbed the chair and moved it, swiftly almost toppling it over.

She smiled at me, letting me know that the way was now clear.

I'm sometimes just dumbfounded when this happens. The chair wasn't in my way and even if it had been the podium was still there. It provided exactly zero help at all. There was no need for any action, for anything to be done. The pathway was wide and open.

She then, noticing I'm sure my lack of gratitude, returned to her post.

I pushed down to the large, long ramp, where I stopped and started laughing. It was comical. It was frenetic and meaningless and made no sense at all.

But, after having my chair nearly stolen, my heart gripped by panic, it was good to laugh.

So moving the chair, meaningless as it was, did actually help.

Odd, huh?

Monday, September 18, 2017

Again

Once again, and I know this is hard to believe, a fellow passenger attempted to steal my wheelchair from the door of the aircraft. My chair is old, well worn, and easily identifiable as a personal chair. It bares faint resemblance to the airport chairs. But just as I was told that my chair was up, a flight attendant noticed that it had disappeared and sent the gate agent fleeing after the people who took the chair. No one sat in it, no one has any idea why it was taken, but the fact is that it was. The fact also is that this is now the second time my chair has been taken from the door of the craft.

Second.

Last time it was when we landed in Buffalo and the security guards got the chair back as they were putting it in the trunk of their car. I kid you not. That time I got the chair back without the foot pedals, this time my chair was intact.

But I'm not.

I'm really not.

I find, and found, this incredibly traumatizing, so much so I can't even begin to tell you.

Every time I get on a plane I tell the purser about what happened in Buffalo, and now will add Vancouver to the list, and ask them to keep a sharp eye on my chair. That's what happened and because of that I have my chair.

I go into deep panic when I think about the 'what if's' ...

Don't people know that?

Why doesn't it matter?

The psychological pain that this causes me is deep and real. I don't know what I'd do. I'm fat, I fit my chair, it's not easily replaced.

Now I'm afraid of the next flight and the one after that ... I'll never feel safe again when traveling by plane.

Ever.

Again.

Sunday, September 17, 2017

Wait HERE

I couldn't believe how I was spoken to, any of the three times it happened.

First I was directed by an airport staff to wait in a section roped off for disabled people to wait to be pushed to their flights. I am able to push myself to the flight, I didn't need and hadn't asked for the service. Second, another staff directed me to wait off to the side while Joe took the bags to be dropped off. When I ignored the direction and started to go along with Joe the same woman stepped in front of me and commanded that I wait off to the side and let Joe take care of the bags. In all three instances, across both people, the tone was like irritated parent with a naughty, disobedient child.

I ignored all the commands, asked the woman who had stepped in front of me to move, and I went with Joe. She was really, really angry, as had been the woman who had commanded me to the roped off area , that I didn't listen.

Joe and I always go up to the baggage drop off together, we need to get a tag for my chair and I always have questions about seating. I'm part of this too.

I get that people may think that suggesting that I not participate in my life think that they are offering good advice. I don't get why they get angry when I make my own decision. In both cases I had at least 20 years on them. I clearly am of age.

The freedom that people have to speak to disabled people so disrespectfully is astonishing to me.

The presumption that people make that we need to be governed by their tone and their intent shocks me.

The audacity to treat disabled people so differently without noticing the difference and the prejudice makes me shake my head in disbelief.

All because they think they are being:

helpful

kind

benevolent.

As a general rule when you think you are doing someone a favour because of who they are ... you aren't.

As a general principle when you think you are needed by someone who is busy about their own lives, leave them the fuck alone.

As a general guideline when you open your mouth and disrespect falls out notice, apologize and for heavens sake LEARN.

Thursday, September 14, 2017

Here's an Idea

I was reading an article on line about a new tourist attraction in NYC that I'd like to go to see. As is typical, the reviewer never mentioned any form of accessibility. I know, I know, I know, it wasn't published on a disability blog, but it was a piece that was meant to inspire tourists to go. I made a comment stating that when a journalist reviews a venue, or show, or restaurant, there should be an expectation that they are writing for the whole of their readership and that a mention about wheelchair accessibility would be nice.

I received almost an immediate reply, "Call the venue."

Shortly later, "Yes, call the venue."

But the writers of these comments don't acknowledge that they don't have to. They don't ever have to think about whether or not they can get in. They don't see this as privilege but it is - to know that you will always automatically be given entry and given bathrooms you can use, is privilege. They are telling me that, even though the journalist could have written two lines about accessibility, I was going to have to track that information down. I was going to have to talk to some employee who isn't really sure what accessibility means and it takes so much time.

The suggestion to call the venue is kind of a way of saying 'shut up' and it's kind of a way of saying that my issue of entrance isn't worthy of a mention in an article. It's also a way of saying, 'don't be so lazy.' Disabled people have unlimited stores of energy and of time and of course we can spend that time waiting on hold to find out if we can get in and if we can pee in a venue.

Did the two people who left these comments think they were being helpful? That I had never thought about simply calling the venue? Were they seriously thinking that I would smack my head and say, 'of course, call the venue, freaking brilliant?'

I wrote the comment for the publication and for the author, I wanted them to think about it. I knew I'd get other comments but ... 'call the venue' ... as a comment tells me that they have no idea about how easy it is for them, and how much work that simple suggestion turns out to be.

And by the way, if I can't find accessibility on a restaurant ad, I don't go. If I can't find it on the ad for a show, I don't go. If they've put in a ramp but don't want me to know about it ... welcome is always chilly. So screw it.

Wednesday, September 13, 2017

Shorting Out

We were waiting to take off, sitting in the disabled area near the gate, with another couple. She used a really cool looking scooter and my interest in the fact that she had it at the gate started the conversation. I asked about her experiences with traveling with a scooter and that was it, we were off. They were a well established elderly couple recently retired, both had worked longer than 65 because both had wanted to.

Disability travel formed the basis of the conversation but little personal bits came out as we talked. It soon became clear to them that Joe was not my assistant but my husband and we knew that realization had hit them when they had cartoon short-outs in their eyes. We, at exactly the same time knew that we were talking to opponents of gay marriage and perhaps even gay rights.

But.

We were stuck, each of us, in conversation with the other. So, we all sucked up our surprise and discomfort, engaged civility and carried on. The tension soon eased as stories of travel and of non-disabled interference and also of their kindnesses flowed. Disabled travelers at airports have lots in common and lots to talk about and an abundance of stories to tell.

By the time we were head down to the plane to be seated we'd had a good jaw, even though for a time the jaws creaked with tension, and that the time had flown by. We thanked each other and they, gingerly, acknowledge Joe's and my relationship by hoping that we boys had a good trip.

I wonder if they will think about us when the topic comes up in the future, I wonder what story they will tell. I hope that our mutual decision to be civil with each other and to carry on talking about a topic we all were comfortable with will make a difference.

Contact sometimes does that.

I hope it does for us as well, I hope we learned that instead of shutting down, carrying on might be a good political strategy. It's one we wouldn't have had the strength to do when we were young, but now, we're a little older and a little more able to be subtle. We will be who we are, openly, and politely, even with people who's eyes short out when they think of us kissing.

Tuesday, September 12, 2017

The Tattoo

I am a gay man.

I am a disabled man.

I am these things all the time but these things aren't always forefront in my mind. Further, I don't often feel both identities rise in me simultaneously.

But.

It happens.

Joe and I were on a plane that had landed and we were waiting until everyone got off so that we could get ourselves organized and out. They plane unloaded as they all do from the front to the back. We watched as people got up and got their stuff from the overhead bins and then struggle to get everything down the narrow aisles. A typical scene.

The man sitting directly in front of Joe, a bulky guy, turned to stand up. He brought his left arm round to rest on the back of the seats in front of him and to help him leverage himself up. He had a tattoo on the underside of that arm. One word. In big, black, Gothic script.

The word.

A name.

The name?

Hitler.

I gasped. Joe looked shell shocked. We both are members of communities targeted by Hitler for death, the name itself is frightening.

He pulled himself up, seemingly unaware or uncaring of the effect that that tattoo would have on us or on anyone else. I glanced around the plane, saw the line up of people waiting, saw all the eyes on the arm, saw the faces of people as the name of his arm entered their consciousness.

Then, he was up and he was gone.

Before I could even formulate something to say.

He dominated the plane, he poisoned the air.

I wonder if that was his purpose.

And if so.

I wonder if he won.

Monday, September 11, 2017

Help That Hurts

After learning that I would not be able to take the shuttle over to pick up the rental car I had to go back across to the airport sidewalk to wait to be picked up. To do this I would have to push uphill across a busy street, but no worries there was a police officer directing traffic, and then up the curb cut on the other side. I checked it all out before pushing off and determined that the street was no problem but the curb cut on the other side was steep. Even so, I was confident and pushed on to the street when the traffic was stopped and headed over.

I made it across quickly and then was working hard at pushing myself up the curb cut. It was, as I predicted, hard pushing, but it also was, as I'd also predicted, doable. I was just nearing the top, I was bent right over and about to swing back when suddenly my chair was grabbed, from behind, and I was pushed, hard, up the rest of the way. This caused me to fly back in my chair, snapping my neck as I flew back and my arms flung out.

Just before swearing at the person who'd pushed me, the person who'd HURT me I noticed that it was the police officer. I said, because I had to say something, I was hurt and angry. That the push had hurt me and that he should always ask before pushing and that what he'd done was dangerous. I don't think he registered anything but the fact that I was ungrateful.

Disabled people have bodies. Our bodies react to being pushed, or startled, or both and often pain results. It's days later and my shoulders are still hurting and my neck complains when I lay down to sleep.

I don't know what to do about this. I don't know how to get heard. Those who read this blog are already sensitized to this issue but how do we get passed the barrier between disabled and non-disabled? Why can they always hear 'thank you,' they are in love with our gratitude, but they can't hear even a simple, reasonable request. DON'T FUCKING HURT ME.

Sunday, September 10, 2017

Proudly Accessible

I did ask. "Are the buses accessible that take us from the airport to the rental cars?" A beaming smile accompanies the word yes. When people are that happy about accessibility, for an odd reason, I get less trusting. "You know, with a ramp and everything?" Again a big smile and a yes. Okay.

We go out to catch the a bus that will get us our car. We arrive to a bus with a lot of stairs. "I was told that the service was accessible," I said. I was then told that they did have a bus that was accessible, they would just have to go get it and them come to get me. I asked how long this would take and she had no idea. Then it was suggested that I wait at the airport, she'd take Joe over and then he could drive back and get me. This is the plan we settle on.

Let's get something clear.

Accessible isn't having one 'special bus' it's being able to access what you need like everyone else does. I didn't mind the wait, I didn't mind being left behind waiting to be picked up. I did mind not being told the truth. I did mind that 'accessible' is often simply not accessible. What's the difference between, in their mind, between the promised service and the service I received?

I don't know but it's a difference they are proud of!!

Saturday, September 09, 2017

Omaha's Welcome

When we landed in Omaha, I was greeted by a young man who was there to assist me in getting from the plane to the luggage area. As you all know I've been working do become completely independent in airports and explained to him, once I'd gotten myself to the top of the arrivals ramp that I thought I'd be okay. Now, I made this decision based on the fact that he had told me that it wasn't far to the luggage area, but that there was a fairly long ramp between where I was and where I wanted to go. I asked him if it was a carpeted ramp and he told me that it was. I took a second and then said, "I\m going to give it a go on my own." "Perfect," he responded, then asked, "may I walk along with you as I'm headed that way myself." I said sure.

I pushed along as he told us about Omaha, he's incredibly proud of his city. We listened to him and followed him as he walked quickly and knew where he was going. We hit the bottom of the ramp. It was steep, it was very long, and the carpet was fairly thick. I pushed up and was stuck. There was no way I could get up by myself. No way at all. I told him that I was going to need his help and he said, "Oh, sure, no problem," He was young and strong and had me at the top of the ramp in no time. He was still chatting, he didn't even become winded with the effort.

Once at the top, before I could ask him to, he let go of me. The transition between his help and my independence was completely seamless. He walked a little further with us, and then wished us well. I made it to the luggage area in short order and we were soon ready to go.

I marveled at this kids ability to provide help in such a non intrusive way. He didn't argue with me about my decision, he must have known the ramp, really a hill, would have been difficult for me to do, he just accepted my decision and made himself available if he was needed. He had no need to force his will or his opinion into my decision making process. When it turned out I did need his help he gave no hint of 'I told you so,' he just helped.

Amazing.

Amazing way to start my visit to Omaha where I will be speaking to direct support professionals. The best of that profession also happen to be the best at just being human.

Thanks to whoever hired this guy, good decision!

Monday, September 04, 2017

LaboUr Day

In Canada, like the UK and other countries in the Commonwealth, we spell 'labour' with a 'u' ... and today, in particular, I think that's so appropriate. I was talking to an elderly woman yesterday who was really excited about her Labour Day plans, she will be taken by her aide to a family gathering. She told me that she resisted getting a personal assistant because she didn't want to admit to needing help. But she says she is now as mobile and active as she was in her 30s.

As I left the conversation I thought a lot about direct support professionals. I thought of those who helped me in the early days of my disability. I thought about access and community and options and freedom. I thought about a work force whose impact changes the world.

Of course labour has a 'u' in it.

U make it possible for someone to take part in the everyday tasks of living. This may seem mundane to some but it's not. I lived in an inaccessible apartment for 10 years and now, in a home I can live in, I can do the dishes. I can't tell you how that feels. But I can tell you providing service so that someone can do what they need to do changes their world.

U make it possible for someone to use their own voice. Yesterday we were in a movie theatre and a direct support professional was assisting a young woman to order popcorn before going to the movie. She spoke softly and you, a Direct Support Professional, created space for her to be able to speak for herself. It was difficult and you had to be gently assertive with those behind in line, but you did it. One of the most amazing acts of direct support I've seen. That's why there's the world 'professional' in Direct Support Professional. You were incredibly gifted.

U change the community by being there supporting people who have been denied community. Every time you go out with someone you reclaim ground that was once lost. People lived in shadows, in basements, in attics, in institutions, locked away from the eyes of others. You defy prejudice and you confront bias just by being with, supporting carefully and treating someone, once cast away, as a valuable person. It's a powerfully political act that will eventually reclaim your part of the world for people with disabilities.

Labour has a 'u' in it.

And U are at work today.

And U will make a difference today.

And U ensure that dreams are achieved.

Of course LABOUR has a 'u' ... of course it does.

Sunday, September 03, 2017

Korean Cauliflower (the restaurant, part 2)

We were seated on the patio. The only place that could fit the 6 of us comfortably was the tall table just outside the door to the patio. We ensured that I was pulled into the table such that the door could open easily and that people could get passed me without difficult we did that.

Let me say again: we did that.

Then it all began. Our orders were taken and water was brought for all of us. This was a work luncheon so water was as hard core as anyone went. We chatted until the food came. One of the waitstaff was really, really, annoyed that I was where I was because she couldn't walk behind me to hand the plate of food to the person it was designated for, so she apologized. With an indication that I was in the way, she apologized for not being able to get around to the diner.

Now, we're all together. We all know and respect each other. We've worked on a project for a year and a half. They all work in the disability industry. The waitstaff didn't need to know the details and didn't of course, but she knew one important one. We were all together. We were part of a group. I was in that group. They get it. But instead of seeing the 'us-ness' of we who sat around the table, she chose to indicate that one of us, me, was out of place and taking too much space.

Then for the rest of lunch I discovered that I was a kind of 'asshole' test. Those who came and passed through the door without incident or without notice were truly fine, decent people. Those who exaggerated their movements to make it such that I was in their way, asshole. These people bumped into my chair, nearly fell over the chair, loudly complained about the chair. These people continued the message that I was not welcome. I was in the way. I was a nuisance.

Messages.

Messages.

Messages.

Exclusion is the only other option when inclusion is discarded. These are the people whose attitudes built institutions. Their behaviour chants: Congregate! Segregate! Persecute! Destroy.

But let me tell you what I think about that meal. "They don't serve Korean Cauliflower from institutional kitchens."

And I'm going to fucking keep it that way.

Thursday, August 31, 2017

The Odds. (the restaurant part one)

I was asked to follow the hostess to a table in a restaurant. There were 6 in my party, including me, and I was at the head of the line up. The hostess walked too quickly for me to be right behind her, I had had to back my chair up and turn it round to go into the room where she had gone. I saw her at the far end of the restaurant waiting, impatiently. I looked around me. There were a few empty tables and then a really, really, long table fifteen seats long, on either side.

A waitstaff saw me look and said that they had a really large group coming in and the table had been set up for them. I looked back to the route that I was to roll. Even now it was a narrow passageway and there were no customers seated at the large, long table, and no one at the few smaller tables on the other side.

Instantly my mind pictured what it would look like in just a few minutes. I could see that the passageway would become completely blocked and any attempt to either go to the washroom or to leave would mean asking every person seated to pull in their chairs or otherwise make space for me. That would be 15 at the least and more if there were people seated at the tables.

The question that formed in my mind?

"Is it possible for there to be 15 to 20 people seated at tables that would be gracious or generous enough to move chairs without negativity or hostility?"

Sadly, I decided, that this was not possible. That it was a pipe dream because the odds aren't in my favour. My experience as a disabled person in requesting space for safe passage has taught me that I am tolerated but not welcomed in places like this. My experience has taught me that, though I can get into places, those that have ramps or flat entrances, getting in is not the same as welcomed.

We sat on the patio.

And I said none of this to the people I was with. It's not always about me, even if, in my mind, there are significant ramifications to my understanding of myself as a 'community member' ... and my realization that I still have to put quote marks around that phrase.

What happened on the patio?

That's for the next post.


Wednesday, August 30, 2017

Stop Over

It's been a few days of figuring out, of planning, of phone calling, of double checking. What I mean to say, I guess, is that it's been a few days of being disabled and living in a world where accessibility of space and in attitude is neither promised or guaranteed. It's all the result of a mistake.

We were asked to do a presentation in a small city in the United States. We checked and found that Air Canada, the only airline we fly, had a non-stop there. When we booked the tickets though, we found that Air Canada flies there on their summer schedule not their fall and winter one. We have to a stop over in an airport that we consider, from our experience, not wheelchair friendly. We also have to transfer to an airline that has caused us problems in the past, the plane is fine, the attitude isn't.

So now we are faced with travelling to speak at an event that we would have turned down if we knew about summer and winter schedules of the only airline left that we trust.

More than that, we've moved. Our old solutions for getting to the airport are no longer options and we have to develop new ways to get ourselves back and forth, from here to there and back. Our initial ideas simply didn't work when we sat to figure and others were way to expensive.

For two or three hours over two or three days. Calls were made. Flights were booked. Seats were chosen. Transit was planned. Then began the double checking. Rooms, accessible. Timing for transit set. Calls to ensure accessibility and understanding about the wheelchair. Painstaking work. Tiring work.

Travelling with a disability means planning and troubleshooting and having emergency strategies tucked in your pocket. Travelling with a disability means being ready, willing and able to deal with gate attendants or flight crew who don't think you should be there at all.

Travelling while being disabled and fat - well that means dealing with sitting at a gate with everyone hoping that they are seated no where near you. Sunscreen protects from cancer, self esteem protects from corrosive attitudes, they both sometimes need to be slathered on thickly.

So, it's done.

So, we are trusting our planning.

While both being quietly terrified of what happens next.

Tuesday, August 29, 2017

10:00 O'clock Pear

I had my 10 o'clock pear at 8 this morning. I live a lot of my life like that. The cool thing is, I get to make that call. I get to feel the regret for eating the pear now, when 10:00 hits. But right now the pleasure of the just ripe, just right, pear is still tickling at my taste buds. So, I'll cope at 10. I will. I've learned to, because I make tiny little decisions that have tiny little consequences all the time.

The other day I heard a mother say to a teen aged child with a disability, "No, you know you don't have snack until 2." It was 1:45, I shit you not. The girl, looked defiant for a couple of seconds and then sat back into compliance.

Really?

That mattered?

Really?

I know, I know, I know, that I don't know the people or the situation and there very well might have been a reason for the 15 minute delay. So don't. But can we all realize that people with disabilities are over programed, over scheduled, over controlled and worst of all, over ruled, all the time. All. The. Time.

Simple requests get called behaviours.

Realistic disagreement gets called non compliance.

There's a lot more names that we call people with disabilities, isn't there?

But when you live in a world where you:

Have to ask for a snack when others your age simply get what they want from the fridge.

Have to eat on a schedule you didn't set and probably weren't consulted on.

Have no flexibility on that schedule or any other schedule.

Isn't there a need for even the tiniest of rebellions?

"Speak up!" "Disagree!" "State Your Point!" I yelled all these things in my mind.

But she doesn't need my voice.

She needs her own.

I pray one day she'll have one.

Monday, August 28, 2017

Apologies

Apologies are interesting things. I am familiar with giving them, I'm human and I make mistakes. I'm always careful with my words, I know that apologies matter and I know that for any kind of reconciliation they have to be sincerely meant. Years ago I read a witticism, "This job requires sincerity, once you can fake that, you've got it made." We all know, and most of us detest, insincere apology.

The apology I dislike the most:

I'm sorry that you were offended.

Apologies that place the blame on the recipient annoy the heck out of me. But I have a new one to add to the list.

Over at the mall, I was rolling around in my power chair. A handsome man, with a body he liked showing off in a tight tee shirt, saw me pull around a corner. He burst out laughing when he saw me and then pointed me out to someone that he was with. They, too, laughed. This is not uncommon for me, for those who have mixed meanness with sense of humour, I'm a perfect target. They saw that I saw them, it didn't matter.

Days later we were back in the mall but I was in my manual chair. I was pushing myself around, stopping and looking in shops and doing what one does in a mall. Joe and I had separated when he headed for the bathroom. I saw him up ahead coming towards me so I sped up and was pushing fairly hard to get to him. I rolled by the handsome, slightly cruel man, on my way. He called out to me to stop. I was startled, but I did.

He came to me, smiling, friendly now. He said that when he saw me in the chair he imagined that I was another lazy disabled person but now that he saw me in my manual chair and pushing myself independently and quickly he realized he had made a mistaken assumption. He stressed how impressed he was by my speed. So, he apologized for his behaviour.

"So it's okay for you to laugh and make fun of some people, because they deserve it, and others don't?" I asked, seriously interested in his answer.

His face hardened and he said, "I apologized, okay."

That was the end of our conversation.

I don't like apologies that come with the suggestion that it was wrong to be rude or mean or cruel to me because don't belong to a class of people who deserve it.

Really?

Apologies are supposed to involve some reflection aren't they?

I had thought so.