Fat Voice, Thin Skin, I'm A Jumble of Contradictions

Sometimes been a professional, while being different, can be a difficult thing. I know that I have to maintain a professional bearing but I also know that I have to stand up for myself whenever I can when facing ignorance or prejudice. Let me give you an example:

Last week I was on the phone with someone, a business call, discussing things of some importance. A joke was made, something simple, and we both laughed. Then the caller said, "You know the weird thing, you really don't have a fat voice."

I'm going to pause here, in a way that I couldn't on the phone and say: WHAT? What the hell is a fat voice? For that matter, what is a skinny voice? Do these things exist? Is there a measure I don't know about. Can my voice be weighed? All this to say, WHAT?

But what I said, without pause, was, wait for this witty rejoinder, "Pardon?" The surprise in my voice was no deterrent to my caller, "Yeah, you really don't have a fat voice. If I didn't know you were really fat, I'd never know by talking to you." Now there was a pause. "Oh, I hope you don't mind me mentioning your weight, I've heard you lecture and joke about it so I thought it wouldn't be an issue for you."

I'm going to pause again, like I couldn't on the phone, and say that while its true that I do make jokes about weight in my lectures, my jokes aren't typically about 'my weight' they are typically about people's reaction to my weight. Even so, yes, I am comfortable with my weight, but I'm not really good about my body being discussed casually on a call. I don't imagine that anyone, even skinny people, or muscular people, or any people of any type would feel comfortable with having their body become part of a work discussion. Anyways ...

After the briefest of moments I asked, "What does a fat voice sound like anyways? I've never even thought about voices as being fat or not." The caller said, "Well, you know kind of slow and maybe a little dumb." Now, work or not, I have to speak up. "OK, I'd like to get back to the subject at hand. This conversation has made me very uncomfortable, and for the record, I think that prejudice sounds dumb, not voices."

We had a brittle few minutes on the phone and finished up, the caller ended by saying, "I think I offended you but from your lectures I felt like I knew you a bit and that you wouldn't be so thin skinned." We signed off.

Now the caller knows about the texture and thickness of my skin ... wonder if they got that from my voice too.

Hush

I wrote a post a couple days ago about a young man who stood up for himself in a store. I wrote the post as it happened with myself as simply an observer to what when on, I was not an active participant in any way other than to respond when asked if I had witnessed what had happened. The comments which were posted both on this blog and on Facebook were quite positive but I did get a question which wasn't asked publicly. I have permission to do so here. The question:

"I don't understand how you could have let that clerk us the r word without speaking up yourself. Why didn't you do something?"

The reason I wanted to answer this question publicly is that I think that it's worth discussing. First let me give the short answer to that question. I didn't intervene because the remark was not made at me it was made at someone else and that someone else was taking action on his own. If I had intervened, my status in the hierarchy of how people see people, would have trumped his. This was his job, this was more meaningful because of the fact that he did it himself and because his voice was heard. Sometimes the most important thing to do is simply 'hush up' and let what happens happen. I can easily imagine situations where I would have inserted myself, but this wasn't one that needed me. He didn't need me. Well, he did, he needed me to let him be the primary actor in his own life.

One of the most challenging experiences I ever had educationally was taking courses in 'Feminist Approaches to Counselling and Therapy." It had me rethinking lots of things but one of the professors stated quite clearly a tenant which I have included in lecture after lecture and is a guiding principle of my own practise. "Never do work for your client that belongs to them."

Let me say that again: Never do work for your client that belongs to them.

We have to understand what our role is, what our work is, of course, but that then means learning what our role is not and what our work is not ... we need, in other words, boundaries. I believe that one of the biggest problems that people with intellectual disabilities have is that people keep leaping in and doing work that doesn't belong to them and thereby robbing people with disabilities of the experiences the need and letting the muscles of independence, non compliance and self advocacy (in its truest most personal sense) atrophy.

I didn't do anything because that what I was supposed to do. Sometimes inaction is the most important action you take.

He didn't need me.

He had himself.

And believe me, that was quite enough.

EXclusion: Piss Off

Photo description: In this photo, lifted from an article in the Toronto Star, people are pictured using the bathrooms at the 'Ex' with the 'We Don't Care' symbol indicating that 'anyone can use them.'

There has been a lot of 'to do' about the 'inclusive' bathrooms at the CNE (Canada's National Exhibition) lovingly called the 'Ex.' For those who can't see the symbol clearly it's a combination of the male symbol and the female symbol that are typically seen on gender spedific bathrooms. A dress on one side and pants on the other.  Underneath are the words 'We Don't Care.' It's been widely hailed as a great step forward.

 I, for one, have never understood the bathroom debates that have gripped the nation to the south. Go to the bathroom of your gender - and by 'your gender' I mean, the gender you identify with. I have never thought that the expression 'who gives a shit' more appropriate to any situation in my life.

But I'm going to challenge all the people who have written articles and blogs about this new 'we don't care' symbol and the brave new world that it ushers in. I'm going to suggest that you still do fucking care because if you look closely at that picture, I can't use that toilet. See that step? That entirely unnecessary step? That robs the symbol of any right to the claim of 'inclusive.' It's still an inaccessible design complete with barriers. Not one article I read spent any time at all acknowleging that while we as a country and society need to be inclusive on the gender front we also need to back up and hear the voices of the 'I need to pee' movement from disabled people.

Listen 'y'all' I recent drove through the freaking woods and saw several accessible bathrooms along the way. You know the kind, the places made so drivers don't have to wipe their asses with leaves after they pooped over a log. You pull in park, and roll into the washroom.

So if they can make an accessible bathroom in the middle of the fucking country don't you think they could make them in the middle of Canada's largest city? Oh, I'm sure that there are disabled washrooms off to the side somewhere. Those washrooms that have never cared about gender, those washrooms where parents can take kids, those washrooms that have always been inclusive. Those washrooms? Why didn't they just make a bunch of those and slapp that symbol on it, maybe they could have given one side a crutch just to indicate that EVERYONE can go there.

I call bullshit on 'We Don't Care.'

You obviously do ... and don't think I think that you are oblivious to the smoke and mirrors thing you did to inclusivity - you know the trick where you make us invisible in the discussion.

Once again, I don't think there has ever been a situation wherein the expression 'you can all just piss off' with your self righteous sense of wonder at your generosity and big heartedness. EXclusion is still EXclusion.

Full Stop

I saw someone with an intellectual disability stand up for himself today. He spoke right up to a clerk who ignored him in preference for someone else, "I was here first," he said. The clerk was taken aback and muttered, "fuckin' retard." The man I saw left for only a second and then came back with the manager. He was crying but when and when he spoke he fought to keep his voice calm. He explained what happened. The manager asked if anyone else had seen and heard what happened. I said that I had, two other people spoke up as well. The manager asked for all our patience as he pulled the clerk out and had someone come to replace him. The fellow with the intellectual disability, who was, in reality, the next to be served, was the next served. It was over.

The fellow standing next to me said, "He must have an amazing mother." It was easy for me to agree, he must have.

This incident happened well over a month ago. I never wrote about it. Every time I started, I felt like I wasn't far enough away from it to understand it yet. I don't always get the stories in my life, when they happen. I don't always realize a story has happened until long after it has been told. So sometimes I wait and sometimes understanding comes.

Why is it that we always tend to give over the success of people with intellectual disabilities to others?

If a woman stood up for herself, we'd think her a powerful woman. We wouldn't immediately think to attribute her strength to another.

If a gay person stood up for himself, we'd think him a powerful person. We wouldn't immediately think to attribute his strength to another.

We see powerful people all the time and though we may have a vague sense of the support system around them, or of their history of being supported by others, but what we see are powerful people.

Isn't it just possible that the amazing person in the story above is the fellow with the disability? Isn't it just possible that he taught himself how to be powerful, how to use his voice, how to advocate against injustice? Isn't it just possible that he drew on his own resources to give him the strength he needed to face down a bigot? Isn't it just possible that the achievement is his - even if he had a wonderful mother or good support staff or the best teachers in the world? Isn't it possible for a person with a disability to have an achievement that belongs only to them?

I heard a mother once, when watching her daughter give a speech at a self advocate conference, a speech that was well delivered, when her daughter, who was standing beside her, received a compliment, she responded before her daughter could speak, "I worked so hard to get her to where she is today."

Maybe mom did. Maybe mom worked really, really hard.

But is the accomplishment hers?

Does it belong to her?

I get a lot of encouragement and support from Joe regarding my nerves about public speaking. Even with that support, even with the fact that I need him to be in the room with me when I'm giving a new talk because I'm calmer with him there, I feel safer. Even with all that. I am still the one who gives the speech. No one ever attributes the success (or failure) to anyone else. What's mine is mine.

Perhaps it's time we started seeing people with intellectual disabilities as capable of owning their own success stories, owning their own growth and development, owning their own adulthood. Perhaps it's time we stop taking from them the things that make them powerful, independent people. Perhaps it's time we recognize that it's our need to feel valued for what we do that disallows people with disabilities the experience of feeling valued for what they've achieved.

He spoke powerfully, he responded with courage, he confronted bigotry and he did it with calm dignity. He is a powerful man. He acted in such a way that the store is now a safer place for all people with disabilities.

He did that.

With his courage.

With his determination.

With his power.

Full stop.

Mattering

The experience of disability, as we all know, is as much a social one as a physical one. This realization keeps slapping me in the face - especially when I've been dealing with my own person experience of myself as a disabled person. This happened in the Vancouver airport on our way back home. We'd checked in and when I asked if it was a long way to the gate the person checking me in told me that she didn't really know where the gates where. This happens to me a lot, when someone pleads ignorance so that there isn't follow up requests for assistance.

I figured, I'm stronger now, I can push farther, I'm going for the gate. We got through security and found that our gate was the furthest from where we were, but in for a dime in for a dollar, off I pushed. I made it to the gate, a very long way, under my own steam but my arms were screaming and I was really puffed out. Even so, I headed straight over to the desk to alert them to the fact that I was there, needed early boarding, that the chair was mine, all the stuff that I do.

The woman at the gate, very nicely, indicated that she hadn't got the computer up and to wait for a moment. I was glad of the moment so I could catch my breath and organize my thoughts. As soon as she looked up ready to assist a woman blasted over to where we were and began speaking to her about seats and her children and what she needed. The clerk said, "This gentleman was here first let me serve him and I'll get right to you."

The woman looked at me and said, I shit you not, "He doesn't matter, he can wait. We need help now. I am not seated with my children, I want to be seated with them. They are 10 and 12 and we need to be together."

The clerk said, "I will be right with you, but this gentleman was here first, I'll serve him and be right with you."

The woman began speaking again saying, "He ..."

I then burst in and said, "... don't say it. Really. Don't. Say. It."

She glanced at me, saw that I had been angered by her behaviour and by her statement that I didn't matter. In her silence, I said, "If you'd asked me if you could go ahead because of your concern, I would have said yes, but now I'm going ahead, not to spite you but to make a statement that I matter too."

I spoke to the clerk, clarified everything and then rolled over to Joe.

The pain that had been in my arms from the pushing now competed with the social pain of being 'someone that doesn't matter."

This wasn't the end of it. On the other end in Toronto, I was being helped to get to the luggage area by someone who'd met the plane to assist me. He had pushed for the elevator and when it came a fellow rushed ahead of us, almost smashing the foot pedals on my chair, and got in the elevator first. The guy pushing me, a guy really aware of disability issues, said, "I think what I've really learned in doing this job is that no one thinks that the time and the needs of people with disabilities really matter in comparison to their own. It's shocked me."

I said, "It no longer shocks me."

How is it that people so firmly understand their own importance that they don't recognize the importance of others?

I matter.

We matter.

The Interview

We stopped for a cup of tea at a little shop in the mall. I found us a table while Joe went to get our tea. It's a place we like because they make the tea from loose leaf placed in a bag. It's good tea. I pulled my gloves off and then got my glasses out of my pocket. My glasses are kept in a long rectangular metal tube. I put them on the table where they promptly fell to the ground. The sound was disproportionately loud for what had happened. I don't understand the science behind sound but when the metal hit the tile, it sound near to a gunshot, everyone looked.

Now everyone was a group of elderly women sitting next to us having a passionate discussion about someone or something in Spanish. A young woman sitting on a stool against the wall. and two men sitting at the table behind mine. I was facing them and the three women were on my left and the young woman on my right. The glasses were on the floor by my right foot pedal. They lay there waiting for Joe to come back with the tea. I wasn't worried. Joe has picked up lots of things that I've dropped and he does it without even thinking about it anymore.

But. The glasses on the floor became a source of some tension. The women kept glancing at it, like they were wondering who would help me. The young woman simply turned her back to the scene and the two men kept on talking with the man facing me directly kept looking at the glasses on the floor and back at the man he was with. As it turns out he was interviewing the young man for a position in a store in the mall. The interview was happening over coffee.

At the point that the CRACK or the metal hitting the tile, the young man being interviewed was talking about being a people person, liking to help people out and being fully dedicated to customer service. I saw him notice the guy interviewing him glance at the glasses and he turned and did too, then went back to his testimonial about himself being someone who would be an asset to the store because he would make the customers feel valued. I was sitting there thinking, 'Come on man, get up and get the glasses, or at least offer ...' It was obvious that the interviewer was watching him and his response to the situation.

Finally one of the older women couldn't take it anymore and started to get up saying that she'd get the glasses for me. I assured her that I had someone to help me and they would be picked up when the tea arrived. She looked relieved, both to know that the glasses would be off the floor and that she would not have to bend down to get them. It looked like it would have nearly been as much of a challenge for her as for me.

Everyone relaxed.

The errant glasses would be retrieved.

The interview continued. Joe arrived, set the tea down and picked the glasses up. It was over.

About ten minutes later the interviewer wrapped up the interview. He said to the fellow that he had done a wonderful interview but he was disturbed that, when he talked about valuing people and wanting to help people out, he hadn't offered to pick up my glasses. "But he's not a customer," the fellow protested. The interviewer said, "That's absolutely the worst thing you could have said." They shook hands and parted. The young man, the interviewee, glared at me when he went by.

But me, I was OK, I had my glasses and my tea.

Sometimes I'm an object of pity, sometimes I'm and object of inspiration and then sometimes I'm just an object lesson. The common theme is 'object' isn't it ... and I kind of object to that.

Advocacy In The Blood

My dad, well, he isn't much of a talker. It is one of the many ways in which we differ. He's the kind of 'Here's your mother' ... kind of dad when he answers the phone. Conversations are best about the weather and are even better when short. As I said, he's not much of a talker.

I went to visit my parents last weekend. My dad is 92 years old and my mother a few years younger than that. When we were there something happened that surprised me to my core. We were all sitting around. My brother and his wife were there, my mother also of course, and we were having teas and coffees and just catching up.

Then.

Dad turns to me and tells me a story.

My Dad is not a natural born story teller, well, that's what I would have said seconds before he launched into this story. In fact he told the story well. Paused, built interest and had a sucker punch ending. I'm sitting there thinking, 'The man telling me this story is my Dad. The, 'here's your mom' guy. Further, I realized a few seconds in that this is a story chosen for me. He recognized it as a story that I would be interested in. Here's my dad's story, written, unfortunately with my words. I will not capture his tone, his cadence nor the words he chose.

He was down picking up a guidebook of hotels and motels in B.C. While he was there picking it up one of the staff asked him if he found the guidebook helpful.

Gee, I can't just let him tell his story, I'm going to interject, my dad is, for the most part, a go with the flow kind of guy, a not make waves guy, a decent nice man. So his response added to my shock.

"I told them that, no the guidebooks weren't that helpful at all," he said. "They asked me why and I said that it was one of the few guidebooks where none of the hotels had any indicators of whether or not they were accessible. I told them that my wife used a wheelchair and we needed an easy way to choose where to stay. The clerk said that she was sure I was wrong so I showed her. Not one. Not one hotel had any information about accessibility. She was shocked"

Not only was she shocked she took down my Dad's information! Here's Dad again:

"Well, wouldn't you know it, I got a letter from the states. The people who publish the guidebook and they apologized for having missed that detail in their publication and would look into ensuring that it would be included in upcoming publications."

That's my dad!!

The guy I thought I didn't have much in common with.

I shouted, "That's where I got it!" and threw my arms in the air. That Hingsburger blood has an advocacy gene in it that I didn't know about.

My dad knows that I battle for disability rights, he knew that I'd like the story. And I did.

As we left, every time we do so we wonder if we will all ever be together again, my dad put his hand on my back, he doesn't do that either, and said, "You take really good care of yourself won't you?" His voice was soft.

It sounded like he said goodbye.

I hope not.

I'm guessing there are more stories.

A Ferry Story

I'm not writing this to 'get back at' anyone. I just need to tell the story in context to get your opinion on how a situation was handled.

Joe and I were coming back on Sunday from Vancouver Island and I'd made a reservation on a late afternoon boat. As we drove down island we noted that the boat was sold out and were pleased that we had made the reservation. When we showed up we discovered, to our horror, that we'd mistakenly reserved for Saturday not Sunday and were facing over a six hour wait, as the next boat was also sold out.

I was a bit panicked because I knew that by then my legs would be quite swollen and painful. We plan our travel, if at all possible to ensure that we aren't overlong on the road. 10 to 12 hours is kind of a max for me. This wait would put us around 16 hours. I arranged to speak to someone at the ferry and when I did, I explained the situation. We'd made a mistake. I took responsibility for that. I explained why I was concerned with the wait.

Now, let me be clear. I was expecting that there was nothing that could be done. Even so, there's no harm in asking.

The fellow we spoke to listened. He said that as we had made the error there was nothing he could do to help. OK, so far, so good, we expected that. Then, he did something I thought was odd.

He went on to say that he had the power to put us on the boat but just wasn't going to. He gave an example of a fellow whose father was in the hospital in Vancouver and needed to get over. "I put him right on," he said. Then, he said to us, "Well, there was no harm in you asking." Which is what we thought too.

Then we watched him walk away.

Again, we were anticipating a 'no' and would have been okay with the 'no' but ... the 'I could if I wanted to but I don't want to' or the 'the other guy deserved my compassion but you don't' thing really rankled me. It was like he wanted it to be clear that he had to power to help and the power to withhold help. Like he wanted us to know, for certain, that he was saying 'no' ... that it wasn't just the circumstance that we found ourselves in, that it was HIS DECISION that we would not be helped.

That annoyed both of us.

Say 'no' and be done with it. But don't tell me that your 'no' is completely at your discretion and that you have said yes to more deserving others - and that you get to decide who deserving is.

Yep. It was my mistake in making the booking. I was unfamiliar with the website and should have been more careful particularly because I need to be responsible for my needs, I shouldn't need to rely on the compassion or kindness of strangers. I don't like playing the 'disability card' and really hated even asking.

In the end we got on the next boat so the wait was only 2.5 hours and we got in before I needed pain killers. Too, we met a wonderful woman at the ferry who tried to help us all she could and of course the staff on the boat, even though we got stuffed on at the tail end of the line up managed to park us so we could get both me and my chair out of the car. Overall I think the BC Ferries is pretty disability friendly.

But this guy and his 'I can but won't' attitude annoyed me.

Would that have bothered you too??

Please be frank, but respectful, in your comments.

Bigot Bowling

A long way from home, I am pushing myself in a mall. Part of it is to do some shopping but I am primarily here for the exercise of pushing myself long distances. I am now strong enough to push myself up inclines and curbs but lack the ability to do long distances.  So, that's what I was doing. Joe was back at the car getting something. I was just pushing by a fellow sitting on a bench. He looked familiar, really familiar. Older, much older, but familiar. I suddenly put it together and spoke to him. I was right, he was someone I'd worked with decades ago back in Ontario. I knew he'd moved west but I'd never expected to see him again.

We chatted only for a moment when he said, "People call me names. Mostly they call me fat. But they call me other names too." It was just a statement. Not a question. A statement. It was like he just needed to say, "This is what life is for me here." I didn't know what to say, or how to answer, then I realized, that I don't work with him any more. I'd thrown myself back into a role that I didn't have. I pushed myself to simply think of this as two people who've run into each other after many years. Then it was easy to know what to say, "That's wrong." A simple statement.

He nodded. "I know it's wrong. But they do it anyways."

I agreed and said, "They know it's wrong too, but they don't care. Mean people are like that."

"What should I do?" he asked. Then I knew that maybe I had shrugged off our previous relationship but he hadn't. His tone in asking the question was exactly what it had been all those years ago when we worked together. "Should I hit them," he asked. I knew he knew the answer to that question.

"When people call me names, which happens all the time," I said, "I feel like hitting them. I do. But I never do. There are other things I do."

He asked me how I handled the teasing, the stares.

We talked for about 5 minutes more. Swapping ideas and even laughing a few times as we talked about living different in a world that doesn't honour or welcome our kind of difference.

I left him there after introducing him to Joe and wished him well. I rolled away and then looked back. He looked so lonely and so vulnerable. He looked defeated by the life he lived. By the constant battery he took from those who know better but use him for target practice any ways. He told me that people never hit him, they just call him names, all the time, every day. I had shared my strategies but I'm not sure he cared about them. I think he wanted a moment where he wasn't alone. "I feel really alone when people call me those names," he had said. His ask of me was not 'therapy' or 'counselling' but for a moment of 'unaloneness.' I could give that to him because of shared experience.

When we came back down the mall from the other end he was gone.

The bench was empty.

I was sorry I didn't have a chance to chat for another couple of moments. I looked around at the people in the mall. I wondered which of these would be someone who would just randomly hurt someone like him. Then I heard someone say loudly to a friend, "Look at that fat fucker!" I turned to see a young man standing with his friend. I knew then, who amongst these would do that. I turned my chair and began pushing towards him. I must have been a frightening sight, because he looked afraid.

"Let's get out of here," he said to his friend who looked equally scared of a big boiling mass of fat cripple aiming straight at them like a bowling ball about to knock them over. I wasn't going to, of course, I had something to say. But they took off running.

So I never got to say it.

But, then, maybe I did.

Isn't

I have not been shy, in this blog or on my Facebook page, as identifying as a fat man. For the most part I feel fairly safe doing so. The people who read here, and the people who I am 'Friends' with on Facebook are by and large people who understand issues regarding difference and prejudice. Even so, there are moments when I realize that even these spaces are not particularly safe for me.

Everyone has seen, I imagine, the news reports of the 5 statues of a nude Donald Trump that showed up in very public places in 5 American cities. The statues aren't at all accurate, I know this not because Mr. Trump have been intimate, but because I've seen him clothed and know that he does not have the body that has been created for the statue. He is not a particularly fat man.

But, we live in days where racism and sexism and homophobia and ableism and disphobia are no where near as damning to a person's reputation or character than simply calling them, in any form possible, fat. Further the statues show Mr. Trump having a very small penis, it being embedded behind folds of fat.

When you see pictures of the statues you also see pictures of people around the statues. People desperate to get a picture of them. Pictures of women screwing up their faces in disgust as they touch the statues penis. People laughing at the image, not of Trump, because other than the hair and face, nothing about this is Trump, but at fat men with fat bodies, at men with penises which nestle rather than hang because of the body type they are attached to.

Worse are the comments.

I can't ever unsee that again.

This is so disgusting I can't even look.

I'm going to stop there, because they get worse, much worse and they betray what I know to be true, being fat is the ultimate in ugliness, in failure, in criticism.

Mr. Trump and his rhetoric appalls me. But it's what he says, it's how he represents himself that causes me to react to him the way I do. It has nothing to do with his hair, his body or the size of his penis.

Nothing.

Yet I see people, people who I thought were pretty cool people, cool with difference, cool with me as a person, posting pictures of these statues with horrible fat phobic remarks. Remarks made acceptable because they think they are commenting on Trump. Of course they're not. They are commenting on men who look like me, fat men.

And it startles me.

You say, in all your other posts that you honour difference.

You say, in all your other posts that people should love themselves as they are.

You say, in all your other posts that body shaming is wrong.

And now I know.

You lied.

And I don't know what to do about it. Except to realize that the space I thought was safe.

Isn't.

Bright Red Walker

She was having a bit of a difficult time. Her walker, a bright red one, was brand new, and she kept bumping into things as she tried to get around. She took it in all good spirits and, in fact, was singing quietly along to the 'I'm Just a Teenager in Love' era of music playing in the breakfast hall. I was sitting just inside the door waiting for room to get in.
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Two women were waiting for toast and watching the older woman, with her new walker, as she got around. They noticed her happy demeanour and her her quietly singing along with the music as she gathered her breakfast. In an almost angry voice, one said, "I sure don't know what she's got to be happy about?" Her friend responded, in full out anger, "And she sure has nothing to sing about."

They were angry.

Their response to seeing a woman, happily going about her day, happily getting used to a walker, was anger. Think about it. Anger.

Were they angry because she was upsetting their stereotype that she should be all depressed and ready to call for the euthanasia bus because she needed to use a mobility devise?

Were they angry because she dared to be happy, to sing, to have chosen a bright red walker, when disability needs to be approached with somber tones, dark furrowed brows and DNRs?

Think about it again. They were angry.

What the hell in that picture is there to be angry about. She never bumped them with her walker and her inexperience. She took up a little more space because of that inexperience but there was space to be had. I was waiting, not because of her, but because others don't know how to handle space when someone in it uses a mobility devise.

Finally, I got in, I rolled by her, stopped and said, "Love that colour of red." She smiled broadly, it was a smile that looked like it had been given a million times in a million different circumstances throughout her life. "It's jaunty, isn't it?" she said. I laughed and said, "Very."

She's lived a happy life. It came so easily to her to simply continue to be happy, even on wheels.

The others seeing me and her chatting and laughing, it must have been too much because they simply grabbed their toast and fled to their table.

I'd rather, any day of the week, have a little song, and a big smile be part of my breakfast rather than sit down into anger to begin my day.

They were angry!!

Angry.

A Fundamental Right

So we're staying in a hotel room that has an odd feature. The bathroom light is on a motion sensor, it just comes on as soon as you enter through the door. There is no way to turn the sensor off. We don't know if this is an 'accessibility feature' of the room but we do know it's a damned annoying one. Both of us wake up too easily when we are standing in a white room flooded with light. And as we are over 60 we both make a few trips a night to the white room. Going from the dark of sleep and the dark of the room into the centre of the sun is startling to the point of full wakefulness. Then, of course, there's the job of going back to sleep.

After two nights of this, we went to the front desk of the hotel. We waited two nights because we forgot about it after the first one. I was explaining to the clerk the problem and said that it was really affecting my sleep, which it was. Joe added in that he too was disturbed by the blast of watts in the middle of the night. The clerk first asked me if I was sure that I didn't need the light to go to the bathroom at night. I didn't say, but thought, I'm 63, I'm here asking for the light sensor to be stopped, I'm pretty sure. I just nodded.

She said she would see what she could do for us. I said, banging my fist on the table, "You just tell them that the ADA says that I have the right to pee in the dark!!" We all laughed. Joe and I left to go back to work and when we were back in our room, the light sensor had been fixed and we were set to have a darker night.

I'm Canadian so I'm not familiar with the ins and outs of the ADA but, if it doesn't say we have the right to pee in the dark, it needs amending.

Do I have an AMEN!

Meeting Big Brother's Sister

I was waiting just at the door to the shop for Joe. He was paying at the till, which though it was marked with the Wheelchair Accessible symbol, was no different than any of the other tills and therefore was to narrow for me to pass through. I made comment, of course, and then went to the front door. The sun was streaming through the windows and even with the air conditioning, I felt it's warmth. I didn't snooze but I was in that comfortable warm, comfy, and pensive state that you get when you have time on your hands but nothing to do.

A hand touched my shoulder and I startled out of my near, but not quite, little nap. I looked up into a friendly face. A woman, smiling, said, "I just wanted to compliment you." I tense up. Disabled people worldwide know the sensation of being inspirational, worthy of compliment, for the most minor of accomplishment. "Thank you, you are right, I do back my chair up really, really well." I waited to hear her finish.

"I noticed," she said, "that you pushed yourself around the whole store without any help at all. At your size, I imagine that's quite a task, and it's good to see you trying so hard, keep at it, you'll achieve your goals if you do." I was stunned. I'm not sure what goal she was referring to, though I can guess, but what bothered me was the sudden realization, again because I've had it many times before, about the sheer visibility of my life.

I go about as if I'm just going about, but because of my double difference, I'm always on display, always becoming part of someone else's story about their day. "Do you know what I saw at the store today ..."

I'm an object lesson. What that lesson is, I don't know, good or bad, inspirational or not, but a lesson I shall be. I'm always a 'what I saw' never a 'who |I saw,' I go about my business just doing things, like we all do, but those things get transmuted from ordinary to extraordinary because of my touch.

"You were watching me?" I asked, a bit coldly.

"No, no, not intentional, I just noticed, and I wanted you to know how pleased I was to see you working so hard," she answered, smiling.

"So, you were watching me?" I said again, pushing my wheelchair away from her.

She got flustered.

"Not watching watching,"

"I'm sorry, you are making me very uncomfortable, could you please leave me alone," I said, quietly but firmly.

She left.

Yes, I wanted to make her uncomfortable.

Because watching someone go about their business is weird.

Isn't it?

Hamish In The Car

One of the stresses of travel, for me at least, is the rental car. I imagine this might be true for others as well. I need to rent cars that I can transfer into and which have room for luggage and wheelchair. It's not easy because when we talk to rental car companies, at least the ones we've dealt with, they are quick to emphasize that 'we don't rent wheelchair vans' even if that wasn't the question. I once was charged for a whole day for a car, which I couldn't go see because there was no accessible pathway from the counter to the cars, so Joe got one and drove it up for me to see. I knew immediately I couldn't get into it. We drove it back down and got dinged for a day. Complaints, and there were many, were ignored. So, cars, yikes.

We are in a car that I can get into easily but it's much more difficult to get out of. The foot wells are deep and it's hard to get my feet up to the 'sill' and then over it. The first time we tried I could only get one foot up and out, Joe had to give my other foot a bit, not much, of help. I realized we are in for a long trip if I need to have help every time. I also knew I'd start choosing to sit in the car rather than be required to have this kind of assistance, from Joe with others watching, because, trust me, others watch.

So on our first night in a hotel in Seattle, I lay in bed thinking about the car, the well, the sill and my legs. I thought through some of the exercises I've been doing with my legs. I know what they can and can't do. By the time I went to sleep, I thought I had it figured out.

The next morning we had breakfast with Joe's nephew and his wife and then we went out. I didn't tell Joe that I'd done a mechanical analysis of my legs, the well and the sill. I didn't want to say I'd got it figured out only to fail in the attempt. I waited until we were where we wanted to go, until Joe was getting the chair out, and I swung the door open and, quite easily, got my lets out, got me out and there I was standing. I've not needed help again thus far on the trip.

That's disability though isn't it.

Figuring it out.

|I watched an old fella with a walker attempt to get out of a food court seat. He seemed trapped for several minutes. A couple people went to assist him and, this guy had an aura that sent them scurrying away, he attempted one or two things. Then sat, and thought, and then got up. He just had to get the mechanics right.

That's disability.

Yep.

\"My dog Hamish has blue eyes."

It Wasn't Necessary.

Wandering around a mall on a Saturday afternoon, waiting to go to a movie, can be quite instructive. I've always been attuned to my environments, a safety strategy that the bullied and the battered learn early, and that became even more true when I became a wheelchair user. So, I pay attention. And because of that I want to paint you three little scenes, all of which happened in the 90 minutes between lunch and the movie, "Anthropoid" for those who want to know.

We were heading to do some back to school shopping for the girls when I saw a man with Down Syndrome walking, with great purpose, through the mall. He clearly had a destination and he clearly wanted to get there.

That's it.

That's all.

Hardly worth a comment, except that it is. Nothing will ever change the fact that I come from a time where that would never have been seen, never imagined and therefore never attempted. I come from a time that he'd not be walking with purpose to a destination he wanted to get to, he'd be shuffling down a hallway with habit and boredom yapping at this feet. I still notice this. I still notice freedom. I hope I always do. Because when I see it, I remember its absence and when I remember its absence I am reignited with purpose. Nothing less than this. Nothing less than this.

Later, same mall, a group of young adults, early twenties, are being a bit boisterous with each other. They speak like the young do, with a deep and abiding belief that the rest of us find them fascinating and wish to hear their humour, their bravado and their points of view. At one point one of the group, calls another on the 'R word.' Everything stops for a moment. Just stops. "I know, I know, I know, I shouldn't have said that," the voice says. After a pause, like a computer resetting, they go on.

Hardly worth a comment, except that it is. The use of the word is unsurprising, but, honestly getting a little more uncommon in my experience. The self correct, thought, that's well to be noted. No one lectured, they just stopped. Froze. Didn't continue. The pressure of the group, even unstated, brought the change and what passed for an apology. This to me is social change. I was ready, willing and even eager to have a confrontation, one that would have just changed the group dynamic to repel the intrusion of a stranger, but the group took care of it itself. It had a new norm. And that new norm, though they'd never admit it, comes from our movement. This is our victory.

Almost time for the movie. Joe is paying up in Target and I'm rolling to the theatre. As I do so two young men, boys really, and walking along side each other. They may have been 14 or 15 and they kept bumping into each other, shoulder to shoulder, in a way that caught my attention. It was then that I noticed, that the friendly, manly, jostle of the shoulders, served to distract people from seeing two hands grab briefly at each other. Young love, even in a place where safety isn't guaranteed, showing itself. I watched them for a few minutes. Smiling.

Hardly worth a comment except that it is. Their fear is justified, I know that because they know that. They know where they are. They know the temperature of the mall. I'm a stranger here. I trust their judgement. However, even in the face of danger they wanted their affection to have a place. To take it's place. They are remaking this place. Reclaiming this place. And they are just boys. Boys. They are the future. I hope they love each other and love each other well and love each other in safety for a very long time.

I'm in my manual chair. I was so sad to leave the power chair behind. But I'm adapting to the use of this chair, to the work that comes with the wheels and |I'm getting around. There is a benefit of moving a little slower through the world. I doesn't matter if that's on wheels or that's on foot, there is a benefit to confining rush to only where rush is necessary.

\It was Saturday. It wasn't necessary.

My Rest In Pieces

We approach a day of travel with some dread. Something will go wrong, big or small, something will go wrong. It started hopefully, we got up on time, were ready on time were down for the bus not only on time but early. The bus itself was there early and we got a straight ride to the airport. We checked our bags, and headed to the gate. Thus far, nothing remarkable but I'm mention it anyway, I'd pushed myself from the apartment to the bus, from the bus to the bag check and now it was getting to the gate. The woman at bag check asked if I needed assistance getting to the gate. It was the furthest gate from the desk.

I told her that I didn't need help. Nope, I was going to do it on my own.

I've never done this before but I've been working out, I've got stronger shoulders, my arms pump iron, not much iron but iron nonetheless. I headed off. Got to security, I've never made it that far unassisted before. Feeling confident. Made it to the first rolling sidewalk and I knew I was golden. I hold on to the handrail of the sidewalk and let it pull me along. I've done this for years. One done, push to the other, do it again. This is one time I see admiring stares from strangers, they think in ingenious, and maybe it is a little.

Suddenly, I'm at the gate. I'm thrilled. I'm a little tired, a little sweaty, but it's an accomplishment. I could never, ever, have done that before, at any time before in my nine years in a wheelchair. Rah. We find out that we have a seat left between us, so we're going to fly in comfort. This may be a trip without incident. We begin to hope.

We both know, DON'T HOPE, it's a trap.

Then we're asked if I need help down the ramp. I don't and say so, I'm invited to go down to the plane. Easily down the first big ramp, on to the bouncy, bouncy, ramp, the final one, and halfway down, SNAP!! My right wheelchair leg broke off. My foot dangled, the metal pieces falling like a teeny tiny meteor shower. Joe grabs the pieces he can find, we both know it's a futile gesture because it's truly destroyed, but he does it, I'm glad he does it. We get tot he plane, onto the plan and into our seats.

While on the plane and in the air they announce that we can, if we wish as passengers, buy Internet time. I take our phone. Sign up. Pay the fee. And immediately begin. I look up wheelchair places in 'Seattle, find their web pages, find their contact us information and contact them. Tell them what I need, what's gone wrong, and ask for help. I find one in Burnaby, Motion Specialties, and write them. I put a note on Facebook and get numbers for places in Seattle. I feel like I'm doing something and I really get how amazing it is to be in the air and on line trying to fix a problem.

A guy named Mike, from Motion Specialties contacts me. He's at home, it's really early still in Vancouver, but he wants to see pictures of the footrest. Thank heavens we have it and most of the parts. I take two pictures, on of the rest as it is, another with a major piece back on it. I send them. This is amazing, living in modern times, doing modern things. He writes back that he doesn't have any new ones but may have a used on that might work. He sends me the address of the business, which he says is on the way to the border, which is the way we're going, and I tell him I'll call from the rental car.

I call him and we drive to the store. Joe goes in with the 'good footrest' and out he comes moments later with Mike who is holding a footrest. He wants to put it on my chair and make sure it works. He does, it does. Then he notices that the new one has a smaller foot plate than my old one. He quickly switches them so I'll have the same rest area for my feet. This guy is the General Manager of the place and he's out there kneeling down fixing my chair and actually caring that I have the best of what they could get for me and in doing so giving the best of himself.

As nice people tend to do,, he brushed off my thanks as 'nothing', as Joe followed him back into pay. It was a used part so it didn't cost much. While Joe was in there paying, I sat there deep in gratitude. This guy read my note, saw the urgency of the situation, wrote to me right away, then, helped out in every way possible. All the way through he was kind and supportive, really wanting to provide the best of service. And he did.

We were on our way less than 10 minutes later, with a new footrest.

My trip was saved.

No other company that I wrote answered. I checked this morning. Still nothing.

But I got so much more than nothing from one guy in one place. I've always said that the world will change if we all realized it just takes one person doing one thing for one person. Well, my world was changed, my sense of the trip was changed, because one person did one thing for me.

Here's my shout out to Mike and all the folks at Motion Specialties in Burnaby.

The Gl-are And More

I noticed them notice him first. After all, I have noticed people notice me for almost all of my life. The glance that notices, followed by the glance that judges, followed by the glance that reacts. Then shock, pity, disgust, hatred. Very occasionally and very rarely, welcome. So it was them, not him that caught my attention. All I'd seen was mother and son walking a few steps ahead of us, going south, on Yonge Street.

For his part, even though he couldn't have been more than six, he'd noticed it too. I'm always suprised when people stated, fully convinced, that a child with an intellectual disability isn't aware of their difference or the difference their difference makes in the wider social community. I'm never sure the motivation behind that belief but whatever it is, it's a serious mistake to make. He'd developed a set of strategies to deal with the gl-ares (my disabled vernacular, a combination between a glance and a stare) that came his way.

He would look up at the eyes that, literally, looked down on him and he'd flick his hand like flicking a fly away. It worked. Or, when it didn't he'd skip quickly ahead at his mother, glance up at her face, showing his back to the eyes that gl-ared while looking at eyes that regarded him softly, lovingly. Good strategy. I admit, blushingly, that sometimes I need to see love in Joe's eyes after I'd seen hate in the eyes of another.

During all this, he never saw me, even when he turned to look at his mother, he never noticed this big guy, rolling along a few feet behind. That's how intently he looked to his mother's face for affirmation, for confirmation of his worth. I, however, saw him. I saw the face that others were looking at, a face that somehow seemed to give others permission to beleive that they were allowed to determine his value. People with Down Syndrome simply have faces, but to others that face is a trigger to bias, bigotry and ignorance, a toxic brew. He was just a cute kid with Down Syndrome, that's all he was. But, that's not all that people saw.

Then, the light is red, we are directly behind him. He turns, hearing the click of my wheelchair as it comes to a full stop. He sees me and instantly his face turns into a smile, a hand comes up and he gives me a small wave. I smile back and return the wave. Then he looks foward again. Never to look back at me again. Most children on noticing my difference find it impossible not to look back, not once, not twice, but many times, often being dragged away by parents not noticing the drag on their children's eyes.

I want to be careful with what I'm saying here. That boy, that lovely boy, walking down the street, the one who endured the gl-ares of others, the one who looked and found love in his mother's eyes, the one who looked back at me with welcome, that kid. Yes he has Down Syndrome, and let's not kid ourselves that fact informs all of his live, and it will inform it for his whole life. He isn't a 'child first and disability distant second' his disability is wrapped up in his entire experience of being child. He needs to learn how to be a K - Down - I- Syndrome - D.

Every moment he was on the street he experienced what it was to be different. He needs strategies to deal with that difference. Parents of kids with Down Syndrome and other disabilities are often told to pay no attention to the disability, 'to us he's just a child' ... well that's not who he is to the world. He needs strategies to cope and strategies to protect and strategies to confront and strategies to engage ... with a world that will see his difference first. Let's state it clearly, it's hard to live a "person first" lifestyle in a world that has a "difference first" value system.

Now, I want to be even more careful with what I'm saying next. When he turned and smiled at me. I saw the warmth in his eyes. When he waved at me, I saw the welcome in his guesture. He's a lovely boy. A really lovely boy. He's a boy whose experience has been informed by his experience of being different, of having Down Syndrome, but he's still a boy. He may be a B - Down - O Syndrome - Y, and as much as he needs to be recognized as a kid who experiences the world differently because of difference, he also needs to be recognized as still being a boy.

That boy's smile was given to me, not because of stereotype. His smile was warm and generous. These are not traits given in a basket entwined with bows by God as a consolation prize for the mix up with the chromozones. It was just a generous smile, a smile that was inclusive. He was a nice kid. Down Syndrome means certain things, but it doesn't mean everything. I don't want to give to Down Syndrome what doesn't belong to Down Syndrome. The kid smiled at me, he recognized my difference, accepted it, welcomed it, and smiled at me.

That simply makes him a B -nice - O - kid - Y.

Old is as Old does

I am officially an old fuddy duddy.

Yesterday afternoon, after we got home from work, I sat down in my chair. We flicked on '24' and began to watch Jack get through an hour of his very first of many bad days. There was lots of action, lots of tension and it moved at a great pace. I was engrossed.

Then.

I wasn't.

I was sound asleep in my chair. Joe knew I'd been through a fairly stressful few weeks and decided to just let me sleep. So he stuck a yellow sticky on the remote control for the television, which was tucked in my hand, telling me he was going out shopping for a wee bit.

Waking suddenly, a bit disoriented, I hadn't slept that soundly for quite a while. I saw that the program was paused. I listened carefully and the place sounded silent. Finally I called Joe to find out where he was and he told me about the yellow sticky, which I found easily, and he said he'd be home in a few minutes.

What's a fella to do?

Yep.

I went back to sleep.

Have t'

I was rushing south on Yonge, on the east side, towards Dundas Square. Joe and the kids were going to take a cab. We were a little late, I can go faster on my own, we were worried about rain, so it made sense for me to go ahead, and for them to grab a ride. I grinned as they passed me on the street, the girls calling out to me and laughing as they raced by in the cab. I knew I was making good time and therefore wouldn't keep them all waiting long.

Scooting by a couple in front of me, I thanked them and zoomed on. Then on the next block I came to a stand still. they were doing construction and pedestrians were being forced off the sidewalk onto the road beside with concrete barriers set up creating a very narrow passageway. To make it "accessible" they made a concrete ramp from sidewalk to passageway. Because it was narrow, the ramp was really, really steep. I feared that I'd tip over going down forwards and if I didn't tip, the speed at which I'd go down I'd run into the concrete barrier. It was a long way back to the light to cross over to the other side. I reviewed my options.

Settling on going down backwards, I turned the chair around and the couple who I had passed had caught up to me. They stopped to give me room to make my manoeuvres and I carefully made my way down. I was touching the barrier while still on the ramp but made the turn anyway and got down. Then I saw the other ramp on the other side, equally steep, equally treacherous. The couple, who were from the Southern States in the United States, spoke with a lovely accent.

"They don't make it easy for y'all, do they," she said, and I agreed. He said, "My mother used to say there's a difference between have t' and want t', this here," he indicated the curb, "would be a have t'."  I agreed wholeheartedly he was right. This was there because they had to do something "accessible" not because they wanted to make it accessible. I climbed back up onto the sidewalk and wished them a good vacation in the city.

I wish I could catch their accent here but I can't, I still hear his voice saying 'have t'' and 'want t'' because I know I'm going to use that classification a lot in my head when it comes to ranking accessibility in my head. I'm already guessing there's a lot more have t' than want t' out there.

A lot more.

Being There

I noticed him immediately. First, as always, the shock of recognition, of kinship. Second, the recognition that he's only there because this is real life. OK, let me explain. We went to see "The Music of Strangers: Yo Yo Ma and the Silk Road Ensemble" with Ruby and Sadie. We had explained carefully that this was a documentary, not a regular style movie. We watched the trailer together. Both girls agreed to give it a try. Informed decision making is a part of how we negotiate our time together.

We landed in our seats in a completely empty theatre, we were all a little disappointed that another couple came just at the time it was starting. We'd looked forward to being alone and talking about the movie as it happened like we do with some television shows, now we had to be hushed and quiet. Oh well.

Very near the beginning, the camera was panning around a square in some country some where, Sadie leaned over and whispered to me, "This is real, right?" I told her it was. Then. I saw that it was. It was real. Because there, in the middle of the square, selling some kind of drink on a small table, was a guy with a disability. He was there for the briefest of seconds, but he was there.

He was there because people with disabilities are there. Are out in the world. Are doing business. Are crossing intersections. Are walking along chatting with friends. Are on the corner asking for change. Are in business suits grabbing lunch. I get all these examples from an experiment I tried after the movie was over. I counted people with disabilities on a two block stretch near Yonge and Dundas, which has been called Canada's busiest intersection. We're there.

Now, back to the movie theatre, back to the movie. As I said, I had this shock of recognition, this memory that we existed, this sense of kinship ... followed by Sadie's question. "This is real, right?" Yes. it's real. She was refering to the whole scene. I'm refering to him being there.

Do you know how long it's been since I've seen a person with a disability in a crowd scene, just being there in a movie movie, not a documentary like this one? I can't remember the last time. I've seen several movies lately, all of whom had crowd scenes and street scapes, some of them had lots of both of them. But not a person with a disability to be seen.

There's lots of talk about diversity in film and an important study is often mentioned. But you will notice that that study, as important as it may be, doesn't look at disability at all. A study on diversity in film is as exclusionary as the industry it intends to expose. How could disability NOT be part of a study about Hollywood representation? How? Well, the erasure of people with disability from any kind of narrative about diversity isn't uncommon. Diversity and Disability seem to be considered two different things. Diversity is presented as a strength and as if there is an imperative to broaden the narrative. Disability is presented, most often as needing the gift of inclusion. I don't want a gift, I want the recognition that we have voices, stories and perspectives that enrich and that the telling of those stories is part of our birthright. Disability doesn't exist so non-disabled writers can slaughter us for tears or sacrifice us to a larger plotline. We can be the plot. We can be the person in the crowd. We just need to be there.

It took a documentary shot of an 'it's real right?' scene of a busy square to finally see a person with a disability exactly where he should be, just there. I want more of that. We are there. We should be there.

We. Should. Be. There.