What I Do

I was accused recently of being a snob.

This surprised me as I'm used to thinking of myself as amongst the snubbed. a Snubbee not a snubbor. But I need to be open to feedback so I asked what I had done that made me appear snobbish.

The answer, when I heard it, didn't really surprise me. I do do what I was accused of doing. The only thing is I do it for a different reason than the one being attributed to it.

So, here's what I do.

When I'm out and about, in my power chair or my manual chair, I don't look at people. I look mostly down towards the ground, catching others sort of waist to feet in my viewpoint. This isn't because I'm creepy it's because, as a wheelchair driver or a wheelchair pusher, I need to look down. I need to see the terrain I'm going over, I have to look for hazards and barriers and I need to see where my chair is in relationship to other people's legs. I don't want to smash into other people's bodies. So I look downish not upish.

But besides the mechanics of pushing or driving a chair I don't look at other people because I don't want to be subject to other people's reaction to me. I don't want to see the stares, the pointed fingers, the faces that people make to show disgust. I don't want to encounter any more of those than I have to, so I just don't look at people.

So put those two things together and that means that I don't greet people that I know when I'm out. I just push on, drive on past them. No cheery 'Hello,' no 'How's it going,' not even a 'Cold enough for you?'' None of those things, I just go by.

Because I want to be a safe driver.

And because the community is rarely safe for me, I need to make it as safe as possible.

I understood exactly how my behaviour might look.

So, I apologized.

And explained.

And then, of course, they apologized and explained.

It's amazing what a conversation will do.

The Season Begins: What Christmas Means To One Mother and One Son

She greeted me with warmth when I got on the bus in the morning. I was a little surprised because I go to work fairly early and am picked up even earlier and when I ride with others at that time, they are, um, chatty. I'm a morning person so I returned her greeting and asked her how she was. She smiled and said that she was already having a nice day.

I got strapped in and we took off. We went by a series of trees decorated with Christmas lights and she asked me if I celebrated Christmas. I told her that I did and that I loved the season. She said she did too. We talked a little more and when I told her what I did for a living she told me that she had a son with an intellectual disability who lived in a group home in the city of Toronto.

"Oh, how he loves Christmas," she said, then paused and added, "and of course, then, so do I."

"What's his favourite part of the season," I asked. She looked at me, hard, and then sat back in silence. She fiddled with the controls on her power chair, it was as if she was deciding if she should answer my question.

I hadn't thought it a difficult question, what's hard about 'presents,' 'Christmas music,' 'decorations,' 'feasts' and all the rest of it all, including, of course, 'fancy Christmas crackers' and the cheap little crowns we wear as we eat like royalty.

She said quietly, "He likes the season because people are just a little nicer to him over the holidays, they pay him a little more attention and he gets to make a few more choices."

I sat stunned.

Then she said, "I want it to be Christmas for him year round."

We arrived at her drop spot and as she got off I said to her, "I wish you and your son a never ending Christmas."

"That would be nice," she said, "really nice."

People little nicer.

Getting a little more attention.

Every day a few more choices.

These are a few of his favourite things.

Mine too.

Ten Fingered Hands

A few days ago, I wrote a post about the natural assumption that people with disabilities live their lives alone. That disability equals isolation. I believe that part of the disphobia that people have is from a bone deep fear that if they became disabled they will not only deal with a new way of being in the world, they will deal with loss of family and friends and any social contact at all.

People can't simply, in my life anyway, see the relationships I have.

They see a lonely, probably pathetic, fat guy in a wheelchair.

I was at the hospital getting an iron top up which takes several hours. Several hours to get a vein. Several more hours to pump the stuff into me. Joe comes with me and waits with me a while and then I send him off to do what he needs to do and I read my book. We talk on the phone several times during the hours that I'm there. Then he comes back about a half hour before I'm done and we talk like couples talk about ordinary things: what are we going to have for supper, are we packed and ready for the next trip, were there any emails of importance. Stuff.

The nurse who was disconnecting me from the machine had met Joe, had seen him come with me and come back for me, had been there as we chatted, began telling me that some people get a bit dizzy from the infusion. She said it would be good to have someone with me for a couple of hours.

Then she said, as a statement, not a question, "So, you live alone."

Both of us were startled.

"No," I said, then pointing to Joe, "I live with him."

"Oh, really," she said with surprise in her voice.

The prejudice and stereotype regarding disability is so strong that people can't see anything but their preconceptions. Even when there is clear evidence that what they think about disability and people with disabilities is wrong, they still can't see us.

See us.

Really see us.

This is our challenge. Someone has stolen from us the right to have our own narrative, the right to have lives lived as individuals, the right to have a story that's different than the one that was crafted and created in different times by ten fingered hands.

When A Hug Is Really A Hug

She is standing right beside me looking me directly in the eye. I am 63 and in a wheelchair and she is 10 standing tall. All around us people are hugging each other and saying hellos. Now she and I are connected in a kind of abstract way and if family trees were drawn she'd be over there and I'd be over here and I'd be one of the ones with the dotted, not solid, lines.. I've met her, I think, only once before. She is a lovely child. And. She is looking at me.

I am looking at her and I knew that to her I am really, a stranger. I said to her, in the context of hugs and greeting going on around us, "I'd like to give you a hug, but I'm kind of a stranger to you and you don't have to if you don't want to, I'm good with that." She actually looked a bit surprised, a choice had been offered. So she did what she needed to do, she thought about it.

"I'd like to give you a hug," she said.

Now, before I go further, I want you to notice her wording because it's of vital importance. She said:

I'd like to give you a hug.

She did not say:

It's OK for you to hug me.

There's a big difference between those two statements. Remember, I had said that I wanted to hug her, but that she had a choice. I was the person initiating the potential hug. She could refuse it.

If she had said, "It's OK for you to hug me," she would have been granting me permission to give her a hug. She'd be ceding to my request.

But she said, "I'd like to give you a hug," she is saying, instead, I have made the decision and this is what I want to do. She wasn't letting me, she had now taking the initiative and stated her preference.

Then.

She gave me a hug.

And it felt great.

Part of the reason it felt great was because a 10 year old girl had thought about the hug, had made a choice about the hug, and hugged because she wanted to, not because she'd been asked to.

It was a fully consensual hug.

And those feel really, really, good.

Cripsterbation

"Please!?!?" she was pleading with me.

I had come out of the exercise room and was heading up to our hotel room, while Joe was out getting the laundry done. I rode up, in silence, with a woman of about my age. We got off the elevator and I began pushing down to our room. It's an accessible room and, like many of them are, it's at the end of a long hallway. The carpet was noticeable but manageable and I was making pretty good time.

Suddenly the woman, who had stopped at her room a couple of doors back was behind me and I felt her touch the handles on my chair. This is a major violation for me, and I don't care if people don't understand that, I don't need anyone's permission to feel violation and I am not required to forgive ignorance that causes unwanted touch. I came to a dead stop. I held on to my tires resisting her effort to push me.

"Don't," I said assertively.

She began to talk quickly about helping me.

"DON'T," I said assertively and loudly.

She let go of the handles,

"Never touch someone's wheelchair without their permission," I said in a tone that let her know that I was not in an 'educational' frame of mind.

"Please, let me push you, let me help," she said.

"I don't need your help and I don't want your help," I said, I was still angry at her for touching my chair and attempting to push me without even asking me.

"Please!?!?"

"No, I don't need help."

"But I've had a really bad day and helping you would make me feel better," she said, nearly tearing up.

The rest of the interchange didn't go well, but let me assure you, she didn't push me to my room.

I'm still upset by this experience. I can brush a lot of them off but, shit, really? I've always resisted insper-porn and all that comes with it. But this, to me, is just a little bit uglier. The idea that we exist so others can show charity and feel better about themselves is disturbing. Such selfishness, she didn't want to help me, she wanted to help herself. I was to be used so she could massage her self esteem a bit. A little bit of cripsterbation will make you feel just fine.

Ewwwww.

Let me say that again.

Ewwwww.

I got back to my room and I'm sorry, I had to do it. I took out my wet wipes and wiped down the handles at the back of my chair. She creeped me out. She disrespected me. And she left feeling that I was an ass for not letting her do what she needed to do to feel better.

I never thought I'd be a centerfold in the Cripsterbation Monthly magazine.

Nor did you, I imagine.

The Second Look

So, I went to the exercise room in a hotel for the first time. I found a machine where I could do two exercises, one was to take hold of a bar from on high and pull it down, this motion lifted a preset weight on the machine. The other, on the same machine, was pulling a bar straight towards oneself thus lifting the same weights. I set the weights too low the first time, then went way too high couldn't even move it ... feeling like a Goldilocks good at adaption, I found one that was just right. Let's define, 'just right' as a piece of equipment that I could pull into and use from a distance, I would pull to me at a couple of different angles rather than straight down. I couldn't get on it, but I could get near it, and that would have to be enough. So sitting in my wheelchair, I did three sets of 10 on each one and then was tired out.

But here's what I wanted to tell you.

These rooms have mirrors everywhere. I had been so focused on the machine and pulling the bar down or , that I didn't notice there was a mirror right beside me. I just did the work. I enjoyed it because it was different from anything I'd done before, and the room stayed empty so I had privacy, so I didn't feel rushed, I didn't feel on display.

Then.

I noticed the mirror beside me.

It was a big mirror. It covered the wall. I saw all of me, I saw my chair, my body, my arms lifted and pulling on the weights. I saw my size. I saw everything. ALL OF IT.

I became immediately embarrassed.

I looked ridiculous, silly even.

I became a little angry at myself, what the hell did I think I was doing.

I don't belong here.

Then.

I looked again. And saw a fat guy in a wheelchair lifting weights in a gym and thought ...

good on him.

Sometimes, you've got to take a second look.

The Ass in the Hat

Some people don't get it. And even though they are clueless to the situation, I've got to be nice because I need their help. On our flight out here, Joe and I had mistakenly booked our seats such that there was one empty between us. It was a busy flight and that seat was soon taken.

When we got to the airport and to the desk at the gate, we approached and I asked if the attendant could fix it so we were seated beside each other. He looked at me, smirked and said, "I don't think you'll have any problems getting the other passenger to switch seats." In one way, I got what he was saying, it was a row of four, and moving one over made no real difference, either way the other passenger was going to be two in.

But the smirk was about my weight and about the fact that any passenger in their right mind would give up the seat next to me given the chance. I got the smirk, as I was meant to, and I asked again if he could fix it. He took our tickets and said, "I'll page the passenger and make the change but I know there will be NO problem in this situation." Smirk. Smirk.

When we were ready to board, he'd made the change. I said, "Thank you very much." I shamed him with politeness and it worked. He looked like he knew that he'd been an asshat and he knew that I knew it too.

Now I know that, at my weight, people would rather not sit next to me. God only knows that there are thousands of commercials and even more movies that have a scene about some poor, beautiful thin person being stuck between or beside fat passenger(s). Ha, ha, very funny.

But that's not the issue. I worry about getting someone who resents moving, who is angered at being asked to make a change, and whose reaction is negative and nasty. I worry about my physical and emotional safety. It's a real concern, I have a right to protect myself from it.

However, I don't want to explain that to the gate attendant. An attendant whose attitude towards my weight is a superior smirk that is the very example of the kind of shit I don't want to go through.

It was a fair request.

He did it for me.

People don't get my social world and the dangers that lurk therein. So thankfully, I do. I've learned that I need to take care of myself, in whatever way I can. And if I have to endure a smirk or two along the way, well, I'll do it.

Because I have a right to be safe in my world, because my world has nasty people in it, and I can't forget that because, they, unfortunately, don't.

Meltdown

"Hi, how are you?"

It was the wrong question to ask me at that time. I'm at a conference and facing a lot of issues regarding accessibility. I have to be in a different hotel because the host hotel doesn't have fully accessible rooms, there is no where for me to sit in my wheelchair in the sessions except the wide aisles, and the straw that broke me was the fact that the washroom on the conference level floor isn't accessible and I have to push down to the elevators and ride down. I had to wait as people streamed around me to the washrooms to get my chair turned around and get out of there. Then I had to find where the accessible washroom was, and then I had to get there.

I was upset.

I was angry.

My arms were tired from pushing on really thick carpet.

Then, just about at the washroom, I saw someone I knew who said, "Hi, how are you?" and I lost every social skill that I had. I launched into a series of complaints, I talked about my toileting needs, I talked about my chair placement. I dumped it all out. It wasn't pretty because I was pretty worked up.

Then Joe appeared and indicated that the downstairs washroom was indeed accessible and I rolled off.

I didn't even ask her how she was.

Yep, a social skills meltdown.

A few minutes later, back in a conference session, I began to think about how I just took that opening and ran with it. I know we know each other but, really, did she need that in her day?

Having a disability often means carrying around a bit of anger and frustration. But I don't want it to make me into an angry and frustrated man. I want to be aware of the needs and feelings of others, not just focused on my issues, my feelings and my needs.

I want to disconnect myself, from a set of circumstances, in order to connect with another person.

And I didn't do that.

Shit.

A Little Bit of Bragging

So I'm going to brag a bit.

Let me start by saying that, as I've been exercising and talking exercise with people, I've discovered that many people I know use visualization as part of their routine, as do I. However I don't visualize myself in new smaller clothes or with big shapely arms, although those are just fine visualizations, they aren't mine at all.

I've been working out to get stronger and I visualize challenges that are upcoming. So, the Vancouver airport has a massive ramp. Just massive. I've been able to push myself, independently, only a short way up the ramp. It's too long, too steep and therefore really intimidating.

It's not sexy but for weeks I've been visualizing that ramp. I never visualized myself going up the ramp, just the ramp itself. I lifted weights, grunted at the strain and nearly sweat blood all while just picturing that ramp in my head.

So the trip began. It started with me pushing the whole way from my apartment to the airport gate, with only a bus ride in between. I've done that before, though, so it wasn't any measure of the extra work I'd been doing to conquer that damn ramp.

We flew in a huge plane. It held nearly 500 people. We've never flown to Vancouver in a plane like this one so we weren't surprised we didn't recognize the part of the airport where the gate was located. I waited, at every turn, to see the ramp. We came out and realized that we were already at the top of the ramp.

Shit, it was like gearing up for a duel and your foe not showing up.

But ... I had to push myself up a carpeted ramp. I had to push for a very long way on carpeted flooring. I had to push myself up the out ramp towards the rental car location. I had to push myself up to where the car was located.

All done without breaking a sweat.

So, the duel will one day be fought, but there were minor skirmishes today, and I took them all.

It's a big deal for me to take back control of my mobility in the chair.

It's a big deal for me to feel my own power.

It's a big deal to feel strong again.

OK, end of bragging.

Mattering

Yesterday, someone who I needed to listen to me, listened to me.

It felt amazing.

Now this wasn't a personal chat, and it wasn't in my professional capacity either, it was a situation of me, as service user to another person, service provider. I went into the conversation knowing that I needed them to be flexible and to be willing to understand the situation and to respond, not with care or compassion, but with action.

To be honest, I held out little hope.

I'm sorry to say this but I've found that many people who work in human services,or in health care providing, really, really, don't like people much.

Not even a little bit.

I had had to talk to three people.

The woman who answered the phone, she was nice, very nice, her attitude and her voice were welcoming.

My confidence increased.

I was put to the next person, a gatekeeper.

She responded twice in such a way that I knew that she had not heard me. The situation that she spoke about in her response was not the situation I found myself in. I took a breath, calmed myself, and stated again the situation and the need. This time she heard and she said, "Well, I understand, I'm not going to be the person to say 'no' ... let me put you through to someone who may be able to help."

OK, it took a bit but she heard me, and she saw that the situation was a little unique.

I got to the next person.

She head the request, but not the situation and said, "Unfortunately ..." then she paused and said, "tell me why you are asking, I don't think I heard it properly." I told her. She said, "Give me a couple of minutes." She was gone for way longer than 'a couple of minutes' when she picked up the phone she said, "OK, we're going to be able to do that for you."

I was stunned.

She had, just as she was saying 'no,' begun to process the circumstance that prompted the request. Then she asked to hear it again. Then, and I almost can't believe this ... she took action.

I left that situation and the service provider part of my brain took note. It matters to hear requests all the way through, it matters to listen, it matters to take action.

It really matters.

I felt that I mattered, and my unique, individual, life mattered.

And that's why it matters.

It's Time

Many years ago a woman approached me after a conference that I had spoken at, she seemed nervous, and when she got close enough, I saw that her eyes were moist. I didn't recognize her, at first, but then she spoke. I was grabbed by the guts and thrown back years in time. To high school, to that time in my life where bullies ruled the hallways and difference, like it ever is, was a magnet for hatred. I feared school every day of my life. (And, no, unlike what you are told, it didn't get better, but to quote Joan Rivers, I got better.)

One of the teachers in that school was someone that I thought would listen to me, I approached her and spoke about being teased and physically assaulted in the hallways and locker rooms. She laughed and asked me what I expected as if it was my fault. I was wrong in trusting her, I saw her afterwards once, watching as a bully (that's the word we use so that we don't hurt the bullies feelings by calling them what they were 'violent bigots') called me a particularly, in her mind, clever nickname. This was who was standing in front of me. Age had changed her too much for me to recognize but that voice, I remembered that voice.

She introduced herself. She apologized for not listening and not helping, and then she asked me if I hated her. I didn't hate her, I didn't remember her, she wasn't different enough from others who were unhelpful, from others who broke my trust as a child, to stand out. So no, I didn't actively hate her. I was silent for a moment before responding and noticed that now tears were falling. She filled the silence by saying, "I'm so sorry, I'm so sorry." I spoke up and told her that I didn't hate her. I didn't say anything else, I didn't talk about how my ability to trust had been forever damaged by her and by others like her. I just said "No, I don't hate you."

She tried to explain her behaviour but I asked her to stop. I told her that I didn't want explanations, the apology was enough.

Then she asked me, "Is there anything I can do?"

I missed the opportunity.

Joe and I went to see the movie, Moonlight, yesterday and I was powerfully moved by the story. In it the subject of bullying is raised and presented as how it is experience, rather than how it is explained away, it is presented as social violence. It shook me. Deeply.

I've thought about the movie a lot since we saw it and I identified with the victim in a variety of different ways. And then...

I remembered her, standing if front of me and asking, 'Is there anything I can do?"

And I remember letting her off the hook.

Of course there are things she can do. She can dedicate herself, for the rest of her life, to speaking up, to stop being a silent witness to the ongoing social punishment of difference. Simply use her voice in places where she can, recognizing that it's not always safe to do so, to intervene.

I have had people, unexpectedly, come to my side when others are pointing, laughing, staring, name calling, making faces and noises. I've had people publicly call out other for being mean, for being hateful or for being intentionally cruel. It astonishes me every time, because it doesn't happen often. It takes bravery.

So, I should have said, "Being a bully is a violent way of being a coward, speaking up is a positive way to show bravery. It's time to be brave."

And it is.

It's time to be brave.

A Sole Soul

I used to think that the reason people feared disability and openly stated that they'd rather be dead than disabled was because of "The Tyranny of the Toilet" as I believe Catherine Frazee called it. What is the Tyranny of the Toilet? It's the idea that people, when they imagine themselves disabled, they imagine having to be assisted in the washroom and then catastrophize what that means and how that would feel. "I don't want someone having to wipe my butt," they say as if this is the worst thing that could happen to another person, to be made vulnerable in that way.

But now I'm wondering if there is something else that people fear, and maybe fear even more deeply. I don't know if this experience is unique to me because of the combination of my weight and my disability, but I suspect not. This has happened to me many times, in many ways, but became clear to me because of a frank chat with a stranger in an elevator.

We had gone to see the move 'The Trolls' this Saturday with the girls. When we got there, to a later showing than we usually go, the line up was huge!! The place was packed. As we waited in line I asked Joe to check and see if I had cough drops, Ricola to be precise, in my bag. I did not. I still have a bit of a cough and didn't want to have a coughing fit in the movie. I knew it was going to take a long while to get tickets so I scooted out and down the elevator to B1 where there is a Shopper's Drug Mart. I got the drops, and a special treat for Joe and the girls, and headed back up.

I pushed the button for the elevator and didn't have to wait long. I got on and it was empty. I knew that we'd stop at the lobby so I positioned myself to give maximum room. Two women and a young man got on. He got off at 2 and we had 2 more floors to go. I turned and asked the women if they were going to a movie and they said they were. I asked what they were going to see and they told me the movie they'd chosen. They then asked me what I was going to see, I said, "Well, we're here with two kids so we're going to see 'TheTrolls."

"Oh," said one, a little surprised.

I looked at her quizzically and said, "Oh?"

She said, "I probably shouldn't say this but I always sort of think of disabled people being alone in the world."

"I'm not alone," I said, "I'm here with my husband and we're taking a couple of kids to the movie." I admit that I said the word 'husband' purposely here. It's a word that stops conversation when I use it.

The doors opened and I wished them a good time at the movie and they wished me a good time.

For what it was, it was pleasant. And for what it was, I'm glad the conversation happened. It clarified for me what I've been seeing in the world for well over a year now. People are always surprised that I'm not alone. And even when I'm visibly not alone, like when I'm with Joe, people still see aloneness because they see a solitary disabled person with someone who is paid to be with them. 'Careprovider Joe.' And when I'm with a group people are surprised that I'm actually with the group, not an add on somehow following along but not really part of anything.

It's like disability causes a social death. That disability means loss of friends and family. That disability means a life lived in isolation. That disability means looking out at rather than being out with. That disability means a heart not loved, a sole soul.

I think that people fear disability because they fear disconnectedness, aloneness and isolation. Since they can't see us as part of the world, they can't see us in relationship to, they can't see us enmeshed in our own lives, they fear what they do see.

And what they see breaks their hearts.

And they don't want to live with a broken heart.

I am not alone.

I am loved.

I am valued.

I know these things but they aren't easily seen. I said to Joe we should get those partner tee shirts, you know the one with arrows pointing at each other ... but then we realized that 'I'm With Him' isn't a tee shirt we want to wear these days.

But one day, maybe we should.

First Trump: Now You

You scare me.

You there, the one who I thought supported the cause of civil civil liberties for people with disabilities. The one who was horrified at Donald Trump's mocking of the disabled reporter. The one who said 'Who would do something like that?' You said it with sincerity and even furor. And you know the shittiest thing of all? I believed you. I believed you actually cared about how people with disabilities were spoken about, how people with disabilities were portrayed and how people with disabilities deserved respect. More fool I.

I guess that why you scare me so much.

Because I believed you, I taught myself that I can't trust myself or my judgements. I can't identify an ally. I can't identify those that secretly revile me and those like me and who pretend otherwise to advance political agendas from those who truly support me, and people like me. You hurt my sense of trust, of others, and of myself.

Why?

I see your posts. I see you calling Trump all sorts of names. Yeah you, the person who got all teary and all upset when discussing Trump's behaviour and stating that he was a 'bully' and a 'name caller.' Yeah, now you are the one calling names the one using the tactics that repulsed you when 'the Trump' did it.

Worse the words you use are most often about his intelligence. Words that has systematically been used to oppress and to segregate people with intellectual disabilities. Now, though I don't use most commonly used words for people who are supposedly of low intelligence, and I protest only the 'R word' when it's spoken or written, I see the pattern of the comments and the posts ... all equating 'low intelligence' with bigotry and bias and bullying. All suggesting that Trump is a low intelligence kind of guy who deserves no respect.

Now I don't respect Trump because of his behaviour. It's his behaviour alone that disturbs me. I don't care about anything else. I don't care what his intelligence level is, as I've found this to correlate with pretty much nothing. I don't care what his education is, as I've found this to correlate with less than nothing. I don't care about who he is at all ... I care what he says and what he does. I care that he makes racist, sexist, homophobic, disphobic and ableist comments. I care that he sees women as people to be valued, on his scale, and assaulted on his whim. I care about those things.

Why aren't you talking about those things?

Why are you suggesting that his behaviour is a result of a slow mind rather than a heart charred with hatred and prejudice ... isn't that the issue?

So next time you are going to call him a name, think about it. Don't bully the bully.

So next time you are going to focus on his intelligence, think about it. Don't classify some. Instead comment on his behaviour.

So next time you pretend offence at disphobic, ableist, language and behaviour, look deep in your heart and if you find that, beyond puffed up outrage, you actually do care. Let that change you.

Brian Zed: Remembrance Day

I struggled to read his name.

I don't know why, at that moment, it was so important to me. Reading didn't come easily for me and most times I avoided trying. But in that moment. It was important. I was a very young boy and I'd been taken to the town cenotaph for a Remembrance Day ceremony. We were children. We heard Flanders Field read, poorly, by another child who strung the words together like they were sounds to be said rather than words to be understood. The ceremony had held no meaning for me.

But then, a man got up with difficulty, held himself steady by holding on to the lectern, began to talk about his brother. His brother who went off to war, he because of his disability could not go. There was anger and self hate in his voice, he had wanted to be at his brother's side. But now he was here to do something important, tell us that his brother lived, laughed and was a big hearted kid. As I listened I understood several things.

He loved his brother.

His brother loved life.

His brother was dead.

And we were not.

It was at that moment that I understood why we were there, on a gray and cold November morning. They had used the words 'heroes' all morning. And a hero, to a child, is Spiderman and Superman and Wonder Woman. A hero, to a child, is immortal. A hero couldn't possibly be a brother who didn't come back, could he? A hero couldn't possibly feel fear, feel pain, dread death, could they?

Standing there seeing a man, holding on to a lectern, standing with effort in the memory of his brother, break into tears, moved me. Men, in my small world, didn't cry. Men, in my small world, didn't let emotion break in their voice. Men, in my small world, went to war and came back. My dad did. I thought all dads did.

He finished his short speech, slipped back into his wheelchair, bowed his head and silently wept. I found I was crying, for this man and for his brother who was lost to him. I turned to the cenotaph and saw the long list of names. I understood, now, that these were the unreturned. I understood that they were gone. That they had family, that missed them, like the man in the wheelchair missed his brother.

There was a name at eye level.

I struggled to read it. I wanted to hold a name in my mind and my heart. It took work but I read the name 'Brian.' I felt a small victory. I'd read the name. Then I tried the last name and saw that it began with a Zed and I gave up without trying.

But 'Brian' was enough.

I held him in my heart. Whoever he was. However he died. Wherever he lay at rest. I hold him in my heart. Because he might have been a hero. But heroes can fall.

And they do.

Still.

In service to my country.

In protection of the freedoms I have.

Still.

They fall.

Like Brian fell.

Dude-ship Language

It happened on Jeopardy! Joe and I are fans of the show and, even if we are in the midst of a Netflix binge, will stop at 7:30pm, every evening to watch. Joe has a better breadth of trivia knowledge but I hold my own on categories that suit my interest. It's a fun watch. And, of course, who doesn't love Alex Trebec?

Anyways as they were introducing the contestants one was identified as a social worker. After the first commercial break Alex was there ready to do a brief and often hilariously uncomfortable chat with each of the three vying for the win. The first guy up was the social worker.

(Let me pause here and say that I will not be able to reproduce exactly what was said, I may get a word or two wrong, but I promise that even with a slight variance in the words I write from the words actually said, the thrust of this post is not changed.)

So, the first guy up is interviewed and he said that he worked with autistic kids in a school setting. He seemed like a genuinely nice guy who really loved his work. Alex asked a question or two and then again he mentioned the autistic kids. Suddenly though, it was like he remembered that he's supposed to use person first language, and just before Alex left and just after he said 'autistic kids' he paused and switched and said, something like, "oh, um, children with autism."

It was awful.

The change in wording to person first language drew much more attention to the autism than did his natural chat about the autistic kids he worked with. In talking about autistic kids in the tone and style of the conversation it was about kids and it was about autism but it wasn't about ... well it wasn't about shame, and a kind of propped up value of those children. The moment he switched to the person first language he drew attention, or the language he used drew attention, to the difference of those kids, to their need for 'propped up value' and the need for their personhood to be mentioned because it couldn't be assumed.

It was awful.

I'd never seen the difference between identity first and person first language so clearly before. The difference was stark.

Now, I recognize that there are people and groups who really disagree with identify first language and indeed I use it all the time in professional forums. It's expected of me and it's a battle I'm not prepared to fight at work. For me at home, in my own world, I use identity first language, most of the time but not all of the time. I never use 'Down Syndrome' kid, for example, I always used kid with Down Syndrome. I'm not sure why but linguistically it seems easier to say and I think the word syndrome makes it something such that personhood needs to be mentioned. I suppose it's a person by person and disability by disability choice, the language that is preferred.

But for me, disabled dude, is fine. Though I'm as far as it's possible for an old guy to be from 'dude-ship' but hey, I get to call myself anything I want.

The Coalition of The Different

I've been afraid of this morning for a long time. I always believed that Trump would win. I said this at work a few days ago and was challenged, "Every poll says that Clinton will win, how can you say that?" I was asked. But before I could answer we were called back to the task at hand.

My answer would have been that the only thing that I have ever seen unite a community is hatred. Working at a group home a couple of weeks before it opened. Getting it ready for people to come home from the institution, I walked from the subway to the house. They had fought against the home, the neighbours did. They fought hard. And they hated us. Those who worked there. And those who had been locked away in shame and fear would come home to hate and unwelcome. Hate pulled a community together.

It would be my first lesson in the depth of hate that exists for difference but not the last.

Coming out and marching in the first gay pride march in Toronto. People threw stones at us. People grabbed garbage off the street at tossed it into our faces. They called out names. Their faces showed us their hearts and their hearts were twisted and angry. My own heart struggled to find pride but it couldn't it just beat in fear, deep, deep fear. Of the crowd, of the new photographers. Would I be hurt? Would I have a job to go back to. Strangers came together, on the street, united in their hatred of us.

I could go on.

About fat ... and the permission it gives people to be hateful.

About disability ... and the permission it gives people to wish me dead.

I keep hearing that Trump won because it was 'the small guy' against 'the elites in government.' No it wasn't. It was those who hated this group, united with those that hated that group, united with those that hated all groups. It was, from the outset, a movement based on hate. That's been clear all the way through.

A coalition of 'the different' will never defeat a coalition united by hatred.

Never.

Love does not defeat hate.

But love can power resistance. Love can turn hearts. Love can cause deep reflection.

Love does have power.

Inclusivity as a concept builds and rebuilds and rebuilds.

Because of these things I think that tomorrow might just be OK. I may not have been surprised at the level of hatred expressed in the election of a man who's primary skill is bluster, but he just might be surprised and the strength of the resistance that's coming.

Because it is coming.

I'm Allowed

I read a post on Facebook by a Mother about her teenage child, she wrote that there were times she wished she never had kids. Then she explained in detail what her son did that made her so angry.

I'm not in her situation, I don't know her pressures, but what he did didn't sound so awful to me. However, what worried me was that this 'I wished I never had kids because the one I've got did something than angered me.' kind of post is so incredibly personal and so incredibly public. I wondered if the boy would ever read this. Would he see the anger in the post? Would he see the wish that he hadn't been born. Is momentary anger an excuse for the public humiliation of your child?

I'm not a parent.

I know that.

But I'm a child of a parent.

I'm not a parent.

But I occasionally provide care for children.

And I'm allowed to wonder.

I was sitting in a food court. Across from me was a mother with her child who had a physical and intellectual disability. She was seated beside him in his wheelchair. She was with a friend and they were meeting for lunch. At one point the boy in the chair dropped something to the floor. She got flustered from being interrupted in her conversation by needing to pick it off the floor. She said, to all listening, "If I'd known he was going to be like this I would have ..." She stopped herself. She looked around, "I'm sorry," she said to her friend, a little loudly, hoping others would hear, "he's a lovely boy and sometimes I say stupid things." Then she looked at her son, and whispering lovingly, she said, "You know I love you just the way you are."

I'm not a parent.

I know that.

But I'm a child of a parent.

I'm not a parent.

But I occasionally provide care for children.

And I'm allowed to be impressed by a woman who knows what words do, a woman that can stop words mid-sentence, a woman that can apologize for what she realized she almost did.

I'm allowed.

Most of You

"Good for you!" her enthusiasm broke through my concentration as I compared ingredients in one can of veggie chili with another. I like shopping. I like looking at prices and products and making informed decisions. I don't like my disability giving people some kind of perceived permission to break into my life, grab my attention and yank it somewhere else. I looked up at her. Smiling. Nice. "I've noticed you pushing yourself around the store. Good for you!" I've written before about how this kind of creeps me out. Like someone announcing they've been peeking into your world and watching you. I nod.

"Most of you people seem to prefer being pushed around rather than pushing yourself, nice to see you putting effort in."

Smiling? Nice? My opinion is changing.

Before I go on let me say that the store seemed to be chock full of wheelchair users. It must have been 'Cripple Day' or something because there were a lot of people there. One used a power chair. One was being pushed by someone else. Three others were pushing themselves. Now I know that on any given day with any different group of disabled people those numbers could be very different.

"Having a disability means that you put effort in every single day, if not in one way, in another," I said.

"Well, I just wanted to say that I'm cheering you on!" She had noticed my tone and this was her parting shot. I don't think she saw it as a shot, but it was.

This is the problem, isn't it?

People don't hear what they say in the way we, or at least me, as disabled persons hear it. I hear insult and prejudice and intrusion. She hears compliments and encouragement.

I'm not sure how to handle these situations. I want so shop, not give a master class in disability manners. I know these are opportunities for learning but I don't want to be forced to take every opportunity for teaching. I just want to know which brand of chili I'm going to buy based of a very strict criteria that I apply in making this decision.

I know that she meant this to be a pleasant interaction, I'm sorry that I couldn't pretend that it was.

I used to be able to pretend.

But I can't any more.

I'm not sure if that's a good thing or a bad thing.

But it is what it is, at least at this point in my evolution as a disabled person who likes to be out in the world but not always part of it.

That Explains Everything

So, I was listening to someone as they told a story. I was part of the group and, like everyone else, was enjoying the ease with which the story was being told. The punch line of the story ended up being that the main person in the story ended up having an intellectual disability and "that explained everything."

In the story the person was a little off, a little different, not quite comfortable in the social situation that he had found himself in. He bumbled a bit. He stumbled a bit. At one point he kind of startled the story teller - the kind of startle that ended up in the encounter becoming an anecdote to be told in spaces like this to people like this. The story teller obviously knows me and knows that I have a disability but felt that, as my disability was different than the guy in the story, I'd enjoy the humour. But instead I didn't. I found it disphobic and ableist at the same time. My face showed offence.

Yes, we've talked about this, but that's not what I want to write about and some encounters need to remain private.

I want to take issue with disability "explaining everything."

Everyone else laughed at the punchline and understood inherently that somehow disability, in particular intellectual disability, is an explanation for some things. His behaviour is off because he's off. His actions were different because he's different. He bumbled and stumbled because that's what 'those people' do.

I don't accept this.

People with intellectual disabilities are not a homogeneous group, one just like the other. Intellectual disability itself takes may forms and affects everyone differently. Everyone with Down Syndrome isn't happy. All people with cerebral palsy aren't wheelchair users. Right? Right.

When anyone thinks that a group descriptor, race, sexuality, gender, religion, 'explains everything.' They are wrong, it explains only one thing - that bigotry and bias are behind the assumption.

One of the political leaders in the election to the south of where I write this loves to talk about 'The Blacks' or 'The Gays' as if there is such a thing. Oh yes people exist in those categories but I am a very different 'gay' than many of 'the gays' that I know. I'm different in the same way they are different from mainstream but our sharing difference doesn't create sameness. Well, except I do really like Judy Garland.

"That explains everything."

Um.

No it doesn't.

Shut up.

The World And Me And The Woman Who Brought The Water

I fell into conversation, a feat in and of itself, with a woman pushing a heavy cart along side me while I pushed myself, both of us struggling with the plush carpet. She was remarking on how difficult the plush made it for wheels and I was agreeing. It's been a couple weeks now that I can talk while working hard pushing myself either on carpet or up inclines. For the longest times nodding and shaking my head were about all I can manage, I've a bit more breath now. We both agreed that what would be good for me would be good for her and for a right many people. Nice chat with someone who 'got it' the fact that she 'got it' for different reasons wasn't relevant.

I made it to the room I was going to present in and pulled myself into the table at the front of the room. I was getting my notes ready for review when I saw her come into the back of the room. She was part of the hotel's team that was providing service to the conference. She saw where I was sitting and said in a voice that I could tell she's used before on conference goers who didn't quite know what to do or where to go, "Oh, that table is for the teachers, everyone else sits here," she said pointing to the other tables. I would have thought that was obvious but I've been to these a thousand and one times, I know first time attenders can get quite thrown off.

"I know," I said, "in this case I am the teacher."

She stopped and gaped at me after a second she said, "I'm so sorry for staring but I've never seen someone ..." she was lost for words. So many people simply don't know how to refer to someone's disability and she didn't want to offend me. She took a breath and dove in "... someone in a wheelchair sit at one of those table. I've been doing this for a long time. I've never seen someone, um, you know, teach here."

"Well, it's about time, then, isn't it," I said laughing.

"Far past time," I'd say she said, "far past time."

Then she wished me good luck on what I was teaching and started out, she stopped again and said, "the world has changed for lots of people, I'm glad it's changing for you too."

I think that was one of the kindest things anyone has said to me in a long, long time.

Pooing VS Participating

I wasn't very nice to someone today and I'm not happy about it.

Sometimes I'm just a jerk.

I went into a session, that I really wanted to attend, and found, again, that there was no seating provided for wheelchair users. Conference hotels have never, ever, in my vast experience of them, taught their set up crew to include one or two seats in a room that are accessible to wheelchair users. So, I go in and, of course, there was no where for me to sit except in the wide aisle between the tables on both sides of the room.

This meant several things:

1) I stuck out. I get enough attention for difference I don't need additional attention because of being forced to sit, entirely on my own, in the middle of a freaking room.

2) I had no where to set my stuff down so that I could take notes efficiently. I'm there to learn, I think best with a pen in my hand,

3) I tried to stay at the back of the room to stay as out of view as possible and was told to move because I was blocking the door. No non-disabled person who came and stood in the same spot was ever asked to move. I'm a fire hazard, they are just exercising their right to be wherever the frick they want to be.

So I was unhappy. Not a good way to start into the learning process. A woman, very nicely, offered to get out of her seat and give up her spot. I didn't want her to do this. I didn't want to be in this situation. As I was with the room volunteer when she offered, a volunteer that looked hopeful that this would be a solution, I said, "No thanks, I don't want pity, I want planning."

Rude right.

I don't think she was offering pity.

I don't know if she heard me but I hope not. But even if she didn't my dismissal of her offer was, without question, rude.

Finally a fellow beside me, without my noticing, moved himself over which freed up an end of a table. I saw a spot to put my stuff so took it and thanked him for having moved.

But throughout the session I listened, and I did learn, it was a good session, I thought about my reaction to the woman who kindly offered to move and the jerk face response I gave. Like, really, it wasn't her fault and she was offering a solution.

Sometimes I can be such a jerk - to the wrong person.

And yes, of course, I did speak to people from the planning committee about the issue. But here's the thing, I don't think it will help. Not because they aren't good people but because conference hotels work really hard to make bathrooms accessible and then, in their conference rooms, act like we come to the hotel to poo but not to participate.

Isn't that odd?

But still.

I was rude.

Shouldn't have been.

Need to stop being a jerk to people who are just being nice.

Separate But Equal

I'd done with fiddling, for now.

No doubt I will go at it again tomorrow morning. I'm going to be giving a workshop at NADD here in Niagara Falls. I've been playing with the presentation while looking out my window which directly overlooks the falls. I'm trying to present first the idea of 'disability context' ... which simply means realizing that people with disabilities live in a vastly different social world, a world that must be considered in any analysis that considers behaviour or mental health. That social world can be completely invisible to the non-disabled and as a result, instead of understanding, professionals try to 'ablesplain' it away - or worse, lay false claim to it through false, and often very patronizing, equivalency.

I will probably be the only person in the room tomorrow with a visible disability. I find this part of my presentation to be troublesome. How do you make something that is deadly serious about the lived experience of disability not sound like whining or griping. Because, as you know, it's much more than that.

But I'm done with fiddling.

Trouble is, I've been thinking about it so much that all I can see is the differences in experiences that others will have at this conference than I will have.

I'm staying at a different hotel because of poor access issues I've encountered in the past from the hotel it's at. It may have changed, but would you take that chance? So I'm physically separated.

All around me people are walking about. We went out to go for a stroll and the sidewalks and curb cuts are impassible. We got a few feet and turned back. So I'm physically confined to my room.

The shop in the hotel I'm staying at is across a stretch of deep plush carpet. I made it over and had to turn around. I was too tired to shop.

It's a different kind of experience.

And that difference matters.

But.

And here is where I'll stop for now, I have a lovely view.

Where I'm At

It's dark. I'm still coughing. Another morning of feeling a little sick and a lot uninspired. I started to feel badly on Joe's birthday. Poor man. It was his 64th birthday and I had to cancel everything planned and simply go to bed. We were in Edmonton and I had lectures to give, and even though the organisers offered to let me cancel one of them to go rest, I made it through. Got home and it went from bad to worse, we both developed horrible coughs and have since been resting as much as we can and simply trying to get better.

I've written through colds and coughs before but this time I simply couldn't. I found myself just tired. I found myself just not wanting to write another story about -

The couple who sat at the table behind us loudly discussing my weight, my disability and making jokes about who they assumed I was and how they assumed I lived my life.

The attempt to go into a place that I'd been looking forward to, a place that lists themselves as accessible and finding that they had both a single step into the building and even if they didn't an interior so stuffed with stuff that I'd never get through.

The mother who used me as a bad example for her son who was insisting on having a candy bar.

The drunk who made a big deal out of me sitting in a bar, wanting to 'include' me by making me even more visible by his behaviour.

Just couldn't do it. Told so many of those stories before that I just couldn't do it again. There is, I realized while sick, such a repetitiveness to the daily doses of discrimination that disabled or different people experience. A numbing kind of wearing down of self esteem and self worth and the development of sensitive touch spots on your soul that comes with the drip, drip, drip of ableist bullshit. I came to the computer a couple of times to write and thought 'why bother' and 'what's the point' and 'how does this help' and then got up and left.

I'm still there a bit.

I don't know why doing this matters or if it matters or how it matters. I love the community around this blog, without question, but am I helping that community or simply using it to feel less alone?

So, I'm not over my cough.

And I'm not over my malaise.

But there you have it, my first post in days.

Joe's Birthday

Today the boy I met at 16 turns 64.

Wow.

Here we are in Edmonton on a road trip that has had us, so far, on four different plane rides, with one more to go. And he's almost a pensioner. I, however, am 63, and will be for a delicious couple of months more. He's now the older man. In this case, really older man.

So forgive me today for just a quick note on the blog. I'm about to take the tottering old guy out for breakfast. It's my job, no, my honour to make sure that today he knows he's loved and appreciated.

Join me if you like.

Letting The Battle Be Fought On My Behalf

Things happen because they happen. Sometimes I, when I'm feeling that life isn't going my way, want to imagine that I have one of those dark clouds over my head that follow me around, but I know that's not how it works for me. Things happen because they happen.

We'd finished a day's work and were heading over to the post office when we heard a loud, really loud, POP. Well Joe thought it was more of a BANG, but I'm writing the story. So we heard this POP and couldn't figure out where it had come from. Joe got out of the car to check to see if the small passageway built for wheelchair exit and entry to the parking lot was wide enough for my chair. But before he could do that his face went dark. He got back in the car. "That sound, the BANG," he said, guess what it was." I said that it was some kind of POP and I had no idea. "Our front tire blew up, he said.

We we had to call the rental company and the roadside assistance and we were lucky we got them just as they were closing. They started with offering a tow truck. I reminded them that I was in a wheelchair and no way I could get into a tow truck and I know that tow trucks don't tow cars with people in them. So several other options were explored. Too which I said, to each one, that I was a wheelchair user and we needed an accessible solution not a typical solution. Finally the guy said he'd be over in 5 minutes.

Joe suggested I go into the store and get the mailing done. I think he wanted me out of the way so that he could deal with the situation without me being there and being difficult. I know I have that tendency but I also know I need that tendency. I agreed only because  knew that Joe knew the seriousness of the situation. He would fight the battle for me.

I got into the store down to the post office, and took my place in a very long line. I kept thinking about the situation as I edged towards the front of the line. Joe arrived just as I pulled up to the desk and started handing over stuff to be mailed. He filled me in on what had happened. We had a new car and he was sure that the new car would work for us and our needs. It's only one more day.

Once back at the car, it was fine. A little more difficult to get into for me, but it was still doable and would work fine. I relaxed into the seat as Joe popped back in to the store because he'd forgotten something. I think that's the first time I've retreated from a situation and let Joe take it over on his own. Over all of our life, I've been the designated difficult one ... it felt good to know that Joe could handle it on his own and that he knew what was needed and he would ensure that we got something that worked.

Disability has changed both of us, and luckily for each of us, in interesting ways.

What Welcome Isn't ...

When we travel and there is a significant time change, we always come a day early to get into the 'zone.' The older we get the harder this is to do, I guess that's one of the things that comes with age. After having breakfast with our hosts, Joe and I set out to explore a bit of Whitehorse. We wanted to pick up some souvenirs and wander around a bit.

Once we got out, given that snow has already fallen here, there was gravel everywhere. It had been spread after the last snowfall. Some of it was sharp and dug into my tires, making pushing difficult and bumpy. So we quickly redesigned the day and went to a small indoor mall downtown. It was great. They had a wonderful place to pick up local artwork and other small mementos of the trip. We were there for quite a while. Though it was packed with stuff, it also had wide aisles. I wondered if that was for wheelchair accessibility or to make room for people in big parkas, universal access is universal access though and I didn't care. I could get around.

The same was true for most stores in the mall except one where the entrance was tight. But they moved stuff and I was able to get in and move around. Finally we ended up at a coffee shop kind of place called 'baked'. It happened to be lunchtime and we happened to be hungry. In we went.

I found a table, Again there was room to move but this time the blockage was because of either packages or bags or strollers which people moved without a thought and certainly without rancor. I found a table and Joe brought tea and amazing orange and carrot soup, which was spicy and rich and vegan to top it off.

The thing that interested me was that this was a very cool kind of coffee shop with a very cool kind of clientele but it didn't have the \too cool for the likes of you' atmosphere. From the clerks to the patrons everyone was welcoming. Now, what I mean by welcoming was that they helped if asked, moved stuff if asked in a 'sure, okay' way. They didn't stare, didn't react to my difference, didn't make exaggerated moves to give me room I didn't need. It was like they'd all had intensive training in the fact that people are people are people and that the training stuck.

We had a nice lunch. We had a nice chat with a woman who sat next to us. We'd started the conversation by asking a touristy question and then fell into a friendly chat about where we were all from. It was just a nice regular kind of thing you do in places like where we were.

I like Whitehorse.

A lot.

The Night Bus

We chatted on the way to the airport with the WheelTrans driver who works the night shift. We were her last passengers of the day. I'd asked her to tell me about her shift. What's it's like on the night bus that ferries people with disabilities from one place to another throughout the night. If I had the energy I'd patent that as an idea for a reality television show. She laughed and talked about driving people from bars, and casinos and movies and shows from their homes and back. I made a few jokes about driving drunks and gamblers around and she said that she had a story or two to tell, as a professional woman, she didn't tell them but her chuckle was explicit.

In a way I wished that this conversation could have been taped so that it could be played for those who are newly disabled or for those who have a pity approach to disability. It was such a fun conversation about people living real, adult lives doing real, adult things. Partying. Gambling. Hitting a late night movie. Catching a live show. Drinking. Dancing, Attempting to do the nasty in the back seat. LIVING with a disability. Not laying in wait for death, with a disability.

Some of those who constantly think that euthanasia is the answer simply can't imagine that life with a disability can simply be life with a disability. If someone with a disability who rode the night bus had written 'Me Before You' it would have been a short story about two people arguing over who got to throw up in the toilet first after a drunken night out. 

And here, on the night bus, we sat. Sober. Serious. Contemplating a 14 hour trip from home in Toronto to hotel in Whitehorse. That's a helluva trip with or without a wheelchair. Just happens that the wheelchair is an integral part of the 'getting there' process. And it's not 'getting to' death's door, it's getting to a city in one of Canada's territories, a place of adventure.

Riding the night bus, a good start to what turned out to be a great day.

Today

We're just about ready.

We've got patience at the ready.

It's a travel day again. The bus picks us up in a few minutes and then we'll be travelling for almost 11 hours. We end up in Whitehorse, which we're really looking forward to, this afternoon - their time. It's been a long while since we've done a trip with two flights required to reach the destination. We're both thinking that I'm strong enough now to do this and that makes such a difference.

Typically we break the day up into segments and designate different segments with different amounts of stress, as I'm needing a little less help these days, there are fewer 'stress' segments. This is good.

We've got our books to read.

We've got activities that we can do.

We've got the conversation we started 46 years ago to continue.

So that's all done.

I still feel it is such an honour to be able to go places and do training, to go places and see how things are different and better there, to go places and learn.

OK, so it doesn't feel so much like an honour when getting up at 3 to shower, shave and get ready for the bus.

Joe is tapping his foot.

That's the signal.

We are off!

Picture This ...

Ruby was sitting doing her homework. She works intently, so intently that I become curious as to what it is that she is working on. I ask her what the project is, seeing pencils of a variety of colours being used. She picks up the paper and shows me. I see a big puzzle with several pieces, on several of the pieces she's drawn an object.

She explains to me that she is to draw things on the puzzle pieces that are things she likes, things about her, things that matter to her. I'm not sure what the assignment is supposed to do, but I like it. I like it when children, or anyone actually, is encouraged to be introspective. To spend time thinking about who we are, what we like and what matters to us is not wasted time. In childhood, at least, this can be assigned, for adults this is homework that we can easily replace with other, less challenging, chores.

I let her go about the assignment and eventually she announces, with relief, that she is done. I ask her if I can see it, telling her that the information on the puzzle is kind of private and if she doesn't want to share it it's okay with me. She thinks for a second and says, "No, it's okay, you can see it." The paper gets handed over.

I'm obviously not going to go over the content of the puzzle because, as stated, it's private. But I will share one that Ruby and I talked about. Up in one corner Ruby has drawn a wheelchair. I was surprised to see it there. I asked her, again letting her know that she doesn't have to answer, why she drew a wheelchair.

She said, as if explaining to a teacher, "My friend Dave uses a wheelchair. His wheelchairs get him around to places with us."

We chatted for a little bit and I told her that I really liked the drawing and what it meant to her, I also told her that that's what the wheelchair means to me too.

It doesn't confine.

It gets me around to places with people I love.

Liberation, on wheels.

I know this is true, I've seen the picture.

A Boy, His Mom and The Truth

Note: I have permission from both people in this story. I agreed only to wait several weeks before writing it so that no one would be able to place where it happened in time. I think both mother and son for allowing me the honour of documenting our brief encounter.

I rolled in through the entrance of a very large mall. I quickly scanned the area looking for a place to pull off to the side. As a wheelchair user I find this really difficult because no matter where I park, I end up being made to feel in the way. Even so, I look for a place to tuck myself in and wait for Joe to park the car and come and join me. I find a spot, turn the chair and back up.

A few feet away from me I hear a protest, "Mom! Stop it! Stop it!" I turn to see a little boy with facial differences, he is glaring at his mom, clearly angry. She is looking at him, confused. "What?" she asked, "What are you talking about? Stop what?"

He pointed at me, he knew I saw him, he didn't care, he was angry at his mom. "You were staring at him. You were. You were STARING."

I admit, I hadn't noticed her staring at me, I'm not surprised that she might, as it happens all the time, but I hadn't noticed at the time. He clearly did though and he was angry about it.

"Staring is wrong, Mom, you know it's wrong. It's mean, it's really mean. It's like calling names over and over and over again. It's like saying 'You are different. You are ugly. You don't belong.'"

Mom is clearly devastated, she starts to cry. She reaches for him, to pull him towards her. He won't let her. He steps away from her. He looks at her like she is the enemy. He looks at her like he's seeing her for the first time. Now, he starts to cry. Standing alone. Crying.

People are staring at them now.

I move my chair, I pull in, not close, but in such a way that I can block the view of onlookers. One of the benefits of being fat is that I can provide shelter. This is one of the moments that I'm glad of that fact.

Finally he falls into her arms, "It hurts mom, it hurts. You shouldn't do it because it hurts."

"I know, I'm sorry, I know, I'm sorry. I know, I'm sorry," she says.

She looks up at me and says, "I'm sorry," then indicating the privacy I've given them, "Thank you."

She's still holding him. Quietly she asks, "It happens all the time?" He nods his head. "Why haven't you talked to me about this?"

He grabs tighter.

"I didn't want you to be ashamed of me."

Pain covers her face. She knows what he faces. She knows his difference will call attention to itself his whole life long. She knows, now, for the first time, that she has to parent him honestly. Her love has to be evident and her love has to include his difference in a real way.

"How can I be ashamed of someone I love so much?" she asks.

"But my face ..." he began and she cut in, "Yes, you have a face that's different than other people's, but you have a heart that's bigger, you understand the world in a whole different way, and you will grow strong enough to be different and proud of it."

He calmed and looked at me. Joe was standing beside me now. He saw how the chair was positioned, he knew something was happening so he waited with me quietly, adding to the shelter. After considering me for a second, he asked, "Is what my mom says true? Can you be different and proud of it."

I answered in a word, "Yes."

Password Jungle

I am lost in a maze of passwords.

I can't get into several accounts because the passwords have changed.

I even got an app that helps remember passwords and I forget the password for that!

I've had no time to write a blog this morning because I've been trying to book bus trips for next week and can't remember the freaking password.

Why am I writing at all then. 

I got the secret question wrong so many times they've timed me out ... I have to wait 15 minutes before trying to remember the answer to a question that I answered a couple years ago.

There has got to be a simpler way to do all this. 

Any password hints anyone?

Does anyone else go through this?

Choices That Aren't Choices

On our way to our hotel this weekend we received an email from our hotel telling us that the room we booked wasn't available but that they had another accessible room, a smaller one, that we would be able to use. The email gave a phone number we could call, so, I did.

I was annoyed. I'm careful with booking rooms, we'd booked a one bedroom and were going to be given a studio. We need the space we booked, which is, of course, the reason we booked it. I get up earlier than Joe to do work and to do my work out. The new room would allow us the different rhythms of our mornings.

In speaking to the woman from the hotel she assured us we could move to the room style we wanted the next day so we just to 'decide' what to do for that one night. Her choice was that we could stay in the accessible studio or we could stay in a one bedroom that wasn't accessible. She waited for me to make my decision.

I was silent, not because I was deciding but because I was struggling to remain calm. Finally I told her, "This is not a choice. I told you I was a wheelchair user. You are offering me, as a choice, a one bedroom inaccessible room. You do realize that if I could stay in one of those rooms, I would have booked one of those rooms. I'm guessing you went to a training somewhere where you learned to give options and choices and you don't want to acknowledge that because I have a disability I actually have no choice. I've got to take the room you are offering, the one I didn't book, because it's the only one I can stay in."

She started to speak, but I wasn't done ...

"I want you to know that offering me a choice that I can't take is insulting and maybe even a little bit cruel. You know that I am a wheelchair user, it's on my profile with the hotel, I've already told you that and you are saying that if I want the room style that I ordered, then get out of your chair and walk. It's like a kind of taunt. I'm upset that I'm not getting what I booked, but I'm even more upset that you would give me a choice that isn't a choice and a choice that I obviously can't take because I'm in a wheelchair. What kind of person does that?"

She started to speak, but I wasn't done ...

"I'm going to take the room I didn't book for tonight and then move to the room I did book tomorrow. But it's a lot of work to do that. It's a lot of packing and unpacking and effort that I'd rather not expend. But I'm going to take it, you know that I'm going to take it, but let's be clear it's because it's my only option not the result of a choice that I was never able to make."

She than said she was sorry.

We chatted for a moment, and I rang off.

She offered me an inaccessible room as a choice! It makes me wonder how non-disabled people understand disability, or if they do at all.

When Not Doing Is Doing

I was pushing my way towards the movie we were going to see. Joe was in the line up getting tea. The carpet was plush and I was getting a real workout for my shoulders. I could feel that my thumbs were getting tired from the heavy pushing. But I'm enjoying taking the challenge and getting myself where I need to go, on my own speed, with my own strength. Joe is good with this, though it's taken him some getting used to. I think when he sees me struggle, especially against a thick carpet, he has to hold himself back from jumping in to help.

I was nearly to the turn when I felt the presence of someone coming up behind me. I turned to look and saw a man that had been a few ahead of Joe in the line up at the concession stand. He saw me see him and said, "Well, he isn't much good as a help is he?" He was clearly annoyed to the point of anger. I have to admit I kind of got angry too, this was Joe he was talking about. The guy who has supported me, in every way I've needed it, since I became disabled.

"Right now," I said with edge in my voice, "he is being more help than you can possibly imagine."

The fellow blew air and said, "What, getting popcorn?" I decided not to correct him, I don't eat popcorn any more. I said, "No."

"What's he doing then?" he asked, he'd slowed to my pace. I didn't stop pushing as we talked. This is something of a breakthrough for me. To push on carpet and still be able to speak is a bit of a victory.

"He's letting me do this by myself, without his help, that's harder for him than you might imagine."

His face did the mental calculations about what I was saying in front of me. It was kind of funny.

"Oh," he said finally, "I get it."

By then we were at the movie theatre and I decided to pull/push myself up the ramp. I do this by pulling on the handrail with my left hand while I push my right wheel with my right hand. He watched me for a second inch my way up.

"Can I ..." he started.

"See, it's hard not to help isn't it?" I asked as I continued, on my own up the ramp. He shook his head as if he couldn't comprehend why I would want to do this.

By the way ... I made it.

A Confused Kind of Gratitude

Today is Thanksgiving Monday, a day off, and I'm here in the United States where it's Columbus day, a day off. I've been sitting here thinking about what to write today as I've been thinking about Thanksgiving and living a life of more intentional gratitude. But then, I keep getting struck about how hard this is for me, not because of something inherent in my personality, but because of my life with a disability. I'm often in situations where I am really confused about how to feel. And, more, when, through that confusion I feel something, I'm conflicted about whether or not what I'm feeling is the right feeling.

Let me give you an example. We drove a massive long 11 hour drive yesterday. This included two stops. Both were precipitated by having to pee and both were used as an opportunity to move around a bit. In both cases we stopped a grocery stores because we wanted to pick up some stuff because we are staying in a hotel with a small kitchen.

On our second stop, we came out of the store, which was surrounded by trees bursting into colour, and as it was raining, I waited underneath the awning for Joe to get to the car and get the door open for me. I watched him as he walked across the lot which was slick with rain and over which a number of leaves, bright yellow, had fallen. The lot looked lit from below with lights the colour of fall. I was enjoying just sitting there, quiet, watching everything. I amused myself by noting that I must be feeling sentimental or romantic or something because I was waxing poetic over a parking lot.

Into this lovely reverie came a voice. "You want me to push you to your car?" I look up into the face of a woman, smiling. "No, thanks, I'm good, I'm just waiting.?" She asked me if I was sure, she told me she was strong, which is code for 'I know you are fat,' and I told her that it was fine, I was waiting and when I needed to I could get to the car myself. I thanked her for her offer and watched her walk away.

The moment was gone.

All I wanted, I realized, was to simply enjoy those few moments alone without my disability being perceived as permission to interrupt my reverie. I just want to be able to sit and wait in places without being pulled into other people's need to help people like me. Somehow I feel that I should be grateful, or thankful, that there are people who would help. And I am. I just want people how would be willing to help if help was indicated or asked for. I don't need help when sitting quietly on my own. Other's might I realize, but I don't.

See. It's confusing. It's good that there are helpful people. It's not good to be perceived as always needing help even in moments when you clearly don't. I wasn't the only one waiting in the rain but I was the only one who was asked if help was necessary. There was a man, struggling with too many bags who could have used a hand. No one approached him, so it's not the state of needing help that causes people to rush in, it's the state of having a disability that defines one as a being that needs help.

So. I was polite but I felt angry. Angry that the few moments I had of watching Joe get the car ready for me to get in, while looking at the beauty of my favourite season, and the warmth I felt at just being there, being alive and being together.

I pushed off and headed down to the car, easily gliding to a stop to where the door had been opened. I got up and hopped into the car. I took a breath, reminded myself it was Thanksgiving, and took a breath of fall air and once again felt grateful.

Solid Ground: Canadian Thanksgiving

It is Thanksgiving Sunday here in Canada. It's a day that has interesting roots. The very first Thanksgiving in Canada, according the the historians at Wikipedia, was in 1578 during the search for the Northwest Passage. Martin Frobisher and crew had a very difficult time of it what with the ice and the storms that they encountered. They lost ships and building material and often got scattered, one boat from another, but somehow the 'miraculously' made landing on Baffin Island together. They gave glory to God in Thanksgiving for their "miraculous deliverance in those so dangerous places."

I don't think there is a person alive who, every now and then in their lives, gives thanks for just getting through, for surviving. I also think that every single person know what it is to feel awe at the miracle of just getting through another day, another month, another year. Life, a fact they did not tell us as children, is hard. Adulthood is hard. Responsibility is hard. Accountability is hard. It's all hard. It's wonderful. It's exhausting. It's trying. It's exhilarating. It's fun. It's all those things, but mostly, it's hard.

So many times in the last few years I've been thankful for just getting through and getting by. In those moments of thankfulness I always think of those who have helped me. Those I know. Those I don't know. I'm always thankful that there are those who've had helping hands, or helpful ideas, or helpful suggestions. I'm glad that I have strong people about me. I'm grateful that I have wise people about me. I'm especially in awe of the fact that I have people about me who challenge me to do better and to be better.

I will never know what those sailors felt when their feet touched solid ground. I can't imagine the joy in their heart as they celebrated what would become Canada's first thanksgiving.

But I do know what it feels when I reach the shore at the end of another week and what it feels like to climb onto solid ground. And I, like the sailors, am grateful.

Here's to being thankful for solid ground.

Here's to a year of finding more, on the journey through the passageways of our lives.

Funny

Yesterday we went, again, to the patio where we like to have a tea. It was another lovely warm October afternoon. I spotted a table with a chair, empty and waiting for me. I scooted ahead and pulled in beside the table. Joe had asked me to go on ahead because he wanted to pop into a shop and pick up a copy of that day's Star. He's addicted to their crossword puzzles and, overall, it's a pretty good newspaper. I obliged him and sat watching for him to come. There are only two tables on the patio, an absurdly low number for the space and they are in high demand, I was pleased with having got one so easily.

Toronto is a friendlier city that people give it credit for and I wasn't surprised when a fellow, with a hot cup of coffee came by and asked me if he could use the chair beside me. I told him that he could but that I was waiting for someone. He said, "Oh, I thought you were alone." I said, "No, as much as it surprises me to say this, I'm not alone." He looked at me quizzically, I continued, "When I was younger I thought I'd always be alone that no-one would love me, and I was thinking when you came by about that."

Then I realized.

"Sorry," I said, "that's way too much information. I was just caught off guard by what you said."

He nodded. "I am the opposite, I was popular in high school, had my pick of girls, everyone liked me. I thought I'd never be alone. Funny how life turns out." In that moment there was such sadness at the table. He got up and said, "I'm glad for you. I'm glad you surprised yourself and probably a lot of other people."

I didn't know what to say back to him. Anything that came to mind was too cliche and too trite for the sadness he felt. I just truly wished him well.

Then I saw Joe across the street, smiling at me, heading over for tea.

The Man Who Talks To Birds

It was a surprisingly warm day for October. Joe and I decided that we'd head over to our favourite place to have tea, a shop with a very small patio. We lucked out and got a table. Joe went in and got our drinks and we set about chatting and people watching. It was a lovely way to spend a late afternoon on a wonderful fall day.

Shortly after we arrived a man came along, with a great big bag of bird seed. He reached into the bag and pulled out a large handful and threw it over the sidewalk and patio. Birds flew from every direction and began pecking at the seeds. He then set the bag down, bowed to the sun, and began talking quickly in whispered words to the birds. It might have been a foreign language, but I think not, I think he was speaking directly to the birds in a language that, oddly, they seemed to understand.

The birds, unlike many of the people sitting around the patio, did not seem to be afraid of this man. This rail thin man. This man who walked quickly and slowly at the same time. This man who saw only the birds. He saw a bird, alone, not eating seed over near my table, off to my right side. He came over to the bird speaking to it passionately, pointing to where the seed had been cast. But then, the bird showing neither fear or interest, he bowed to the bird and came back to where the other birds had gathered.

Many others, out on the patio, quickly gathered up their things and left. One or two not liking the birds, all the rest quite fearful of the man who had done nothing but toss seed and talk passionately with the birds. He scared them. Neither Joe and I were scared of the man or of the birds. I am a closet bread tosser to birds in parks person, I like birds, I like seeing them fed. Feed The Birds was my favourite song from Mary Poppins.

As we were leaving we passed him as he was packing up his bag of seed to head out somewhere else, to some other flock, I said to him that I had enjoyed watching the birds and then thanked him for creating this experience for me. He hadn't seemed to be listening but when he heard the thank you he seemed startled and then looked at me closely. He said, "aren't they beautiful, did you know they could fly?" I said that I did. He nodded seriously, "Good, it's important that you know."

I felt sad for all those who had fled this man who talks to birds. Because even though he talks to birds, people need to know that he talks to people too."

S/he Shoots, S/he Scores: filmed by a stranger

We were at an arcade and Ruby had challenged me to a game of air hockey. I've not played in years. I found that being in a wheelchair I didn't have the reach necessary to be able to play well and, frankly, I didn't have the endurance either to be up, leaning forward and reaching my arms out. But, I figured I have more strength now, I might have more reach too. Well. I did.

I was having a blast. The puck flew back and forth between Ruby and I. At one point I forgot and had my fingers over the ledge, to help me hold my body in position, and the puck slammed into them. Youch! That hurt!! Apparently it was also very funny. The game grew heated and we were tied for most of the game, one person scoring and then the next catching up. Ruby was determined to beat me. I was determined to be the winner. We screamed when we got goals, we screamed when we were scored on, and we played, hard.

A little while into the game I noticed a woman standing off to the side with her camera up. She was filming us playing air hockey. I don't like strangers taking photos of me or of the kids. I don't trust the motivation. I glanced at Marissa, Ruby's mom, and she shrugged and said, "I don't see what's so interesting you need to film it." I agreed. But then, before we could do anything. She stopped. The camera came down. She seemed satisfied with what she had filmed and moved on.

There are pictures of me, placed on the web by strangers, that can be found amongst other pictures of fat disabled people. Put up to mock and put up to shame and put up to demonstrate what ugliness, or laziness, or sloth looks like. I became aware of these a couple years ago and know that there's nothing I can do about them. They are there. But because of these I am very, very, cautious around strangers and cameras. I don't think anyone has taken a picture of my, without my consent, in a couple years now. I know how to avoid the gaze of a camera and I know how to speak to those who would violate my privacy.

This time I felt a little different. If this was ever put up to mock me, people would see a fat guy in a wheelchair having a blast playing air hockey against a 10 year old girl who was a fierce opponent. There may be shame in intention but there's no shame in the image.

But, then, I don't know her motivation. Maybe she was just intrigued by what she saw. Maybe playful, happy, disabled people aren't in her emotional vocabulary about disability. Maybe children and relationships and love and passionate life aren't in the definition she has of disability.

I don't know.

And, I kinda don't care.

Strategies, Tired, Old Strategies

So, we'd made the reservation. I'm careful with reservations. "Fully accessible!" I'm told by a chipper person who's taking down the details regarding time and number of people attending. "Fully accessible," is a term much mistrusted in the disability community. At least my immediate community tenses with caution when hearing that two word phrase.

We get there and there are two steps up to the dining area. I said to the host, "I was told this was fully accessible." He smiled, as if I'd made a joke, "Well, we're kinda accessible." There isn't any such thing as "kinda accessible." He showed me a flimsy fold up ramp that can be put out to go up the stairs. Now at my weight and the weight of whoever is helping me, we aren't getting up that ramp. Secondly, even if we get up the ramp, there is no where to go. The space between tables is so tight that those who walk have to turn sideways to get through.

I'm angry.

I know that it's not the host's fault. I know that. I know that the people who run the restaurant know that too ... the one's who really are at fault. The one's who encourage their staff to say, 'fully accessible' and the one's who rely on the good manners of customers facing barriers to not yell at staff who have no control. I want to yell at the host. I really do. But I don't. He's working for a paycheck. He doesn't own or run the business. He has to deal with people all day. I want to give him a message to management but I wonder if he ever even sees them.

But.

I'm angry.

I found a place where I could get up from my chair, use the handrails to make it up the two stairs, and then get the chair under me and in at a table. It was difficult and it was dangerous, but I had planned this, it was a special occasion, and I wasn't going to have it be my disability, again, that caused problems.

Because it's not my disability that's the problem, but people find it easier to blame what's present, the disability, rather than what's not present, actual accessibility.

So, I acted calm but ate angry.

In the end, I had fun. Well, that's not quite true. Part of me had fun, part of my was using tired old anger management strategies just to get me through lunch.

The "Ramp"

"Oh, yes, we are fully accessible."

So we arrive at the Skylon Tower in Niagara Falls aiming at spending time in the arcade and then going up for a birthday lunch for both Ruby and Sadie who have September birthdays. I get out of the car and into my chair and roll over to the "ramp." The "ramp" is steep. Really, really, steep. It doesn't even look like it was intended to be a wheelchair ramp. I look at Joe and the girls and say, "We can't get up that."

Joe nods slowly, looking at the ramp. The girls look concerned. They have gotten used to barriers, but they have also gotten used to us figuring a way around most of them. This one, we all know, is a really big barrier. Ruby runs to check to see if there is another, actual, real, ramp. There isn't one. I really don't know what to do.

Then, I notice a fellow in a scooter along with a woman using a cane coming along with their family. There are five of them in total. Along with the two disabled folks there are two teenage boys and one triathlete kind of woman. They stop, look at the ramp, and say, "We'll get you up that ramp." I decline their offer, knowing that it's our only chance of getting up the ramp. But, like many people, refusing needed assistance is hardwired into my DNA.

The fellow in the scooter, a man about my age, says, "We've got young people with us, they can get you up that ramp, no problem." I look at one of the boys who looks horrified at being pulled into this discussion, not because he's a bad kid and not because he's indifferent to the situation but because he's a young teen who doesn't want to be pulled into any situation not exactly of his own choosing, and make a joke about him having to push me up the ramp.

Then I see Ruby and Sadie watching. They are seeing a small community of people, pulled together by circumstance, inaccessibility and disability. They are seeing one man with a disability offering help to another man with a disability. They are seeing that sometimes the solution is the willingness of other people. I accept.

In an instant they are behind me. Joe, the incredibly strong woman and the two teenage boys. I'll add here that I also put my back into it and grabbed my wheels and started pushing. No passive acceptance here. In moments we are up the ramp, we all say goodbye and they are off and we are off.

Later when their mom arrives we tell her the story and I see the girls listening and nodding along to my explanation of how we conquered the ramp that wasn't a ramp and made accessible what wasn't accessible. As I told the story I could still feel the moment, half way up the ramp when everyone was flagging, that I felt the woman put her hand on the back of my wheelchair and PUSH. That was the moment that I knew we'd make it.

Community is community is community.

And sometimes I really love this disability community of mine.

Trapped!!

I came round, like I always do, to the ramp that takes me up to where we often shop. As I did I noticed a big strapping man, with a tight tee shirt over a trim and muscular torso, over his shoulder was a gym bag with the emblem of the exercise facility inside the mall. He was walking quickly down the ramp and following him was his polar opposite. She was old. She was tiny. She looked frail. She walked taking each step carefully, setting her cane down daintily with every footfall. She moved with a speed that belied her look. Careful, tiny, but fast. She was only steps behind him.

He saw me.

I had stopped by then, knowing that the two of them would need to step by me in order to get to the street. I'd pulled over to give them lots of room. It was then he noticed me. He panicked. It was like he was suddenly overcome by guilt for being on the ramp, which he need not have, it's a public ramp and for exiting the building to the east it's way more convenient than the stairs. But, guilt doesn't have to have a viable reason does it?

He turned.

Started back up the stairs.

Like he hadn't seen her.

Then.

He did.

He came to a cartoon stop. With his feet on their toes at a complete stop and his body hurtling and curling over the top of the woman behind him. He managed to pull himself back, his body would have had to work hard to pull that feat off. Now he was trapped. She was behind him and I was in front of him.

He didn't know what to do.

I said, "Come ahead, there's lot's of room."

He apologized and I told him it was unnecessary, it's a public ramp that we all share. He nodded thinking me kind rather than right.

Then, he dashed off.

I waited as the elderly woman also passed by. She leaned towards me and said, "Wasn't that fun!" Then she laughed. I admit that I got the giggles too. "Yeah, it was."