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.