The Heart As A Strategy

Joe was in the choir on Sunday. He'd been working toward this for a couple of week, dutifully heading off to choir practices even when he didn't much feel like it. He was singing in both morning services but as Ruby and Sadie were spending the weekend with us, we decided that the three of us would join Joe for the later service and then all come home together. This meant that the kids would be my responsibility from getting them up to getting them on the bus.

Both Ruby and Sadie are very aware of how we adapt routines when I'm the one whose role it is to get it all done. It had gone very, very smoothly and we even had a bit of time to sit and chat before we had to go down to the bus. Ruby headed off to their bedroom to get something she wanted and Sadie and I fell into chat about school. She began telling me about three kids who aren't very nice to her. She identified that they mostly excluded her from activities that she wanted to join, that they didn't hit her or call her names, but even so, she recognized that exclusion was, in her words, :"still like bullying."

She's right of course.

I asked her how it made her feel when that happened and she said that it hurt her feelings but "only a little bit." I told her that I was glad it was only a little bit but sad that her feelings were hurt at all. Then I asked what does she do when this happens. She said, "I go an play with my friends." That sounded reasonable and I said "and that's why it only hurts a little bit because you've got friends there?" She looked at me and said, "No." Curious, I asked, "Why does it only hurt a little bit then?" She said, "Because I only let people who are nice to me into my heart. That's why they can't hurt me very much."

I was bowled over.

That's a great strategy.

I told her that I hope she kept doing what she was doing her whole life long.

And then I asked myself why I wasn't doing the same.

Gift Wrapped Foot in Mouth

Have you ever wanted to grab words, that have spilled out of your mouth, and pull them back. Make the said, unsaid? I was chatting with a woman who had told me only a few minutes before that she wasn't looking forward to the holidays this year because times were tight. She had managed to get things for her kids but every penny she spent in one place had to be carefully cut out from another. She was tired.

But we had left that conversation and had moved on to another, I was talking about Ruby and Sadie and how they have changed the holiday season for us. We've always loved it, but it's even more exciting with tyrannical elves on shelves and plates of cookies for Santa. It's a great season.

Then, in excitement I began talking about the gift we picked up for the kids, for the first time the parents don't know what it is, the girls don't know what it is and it's a gift that both Joe and I think is very cool. I talked about how hard it was to find, how we tracked one down and how we snatched it up.

While the gift isn't outrageously priced, it's not cheap either.

As I'm talking I'm actually really hearing the earlier conversation. About someone who is having difficulty making ends meet over the holidays, who is struggling to get gifts. I had heard the conversation but I hadn't really HEARD it, it hadn't sunk deeply enough in my consciousness to have the impact that it should have.

After having listened to her, in my mind, minutes too late, I then, and it was awful, heard me. Bleating on about searching for this gift and how we managed to get it. It was unnecessary twattle that sounded a lot like, well, I don't want to say.

I need to listen in the moment.

Not later after I've already put my foot in it.

Throughout my quickly finishing up my gift chat and moving on to something else, she was kind and let me change the subject. We chatted for a few more minutes and then wished each other happy holidays.

May one day my mouth and mind be subject to my ears.

One Ride Two Perspectives

I got on the bus, heading to my work's annual holiday party, looking forward to the evening ahead. It's nice to spend time with people without the pressures of day to day demands. The driver wasn't chatty. At all. I asked him how many pickups and drop offs before we got to where I was going, he never acknowledged the question and simply kept driving. OK, I can live with mystery.

Eventually we stopped and picked up a young mother and two girls. The girls raced on the bus and raced to the seats they wanted. It seems it was a race. It was the first of many races and competitions they would have throughout the portion of the trip that I shared with them. If I closed my eyes and listened, they sounded just like Ruby and Sadie, so, therefore, I loved it. Mom was helped on to the bus by the driver. She was in a very cool looking manual chair, she nodded hello and before she could say anything else I said, "The sound of kids having fun never gets old does it?" She smiled and said, "Well, maybe sometimes." I laughed and we were off to a good start.

We didn't chat much, but somewhere in there I told her that her wheelchair was cool. The girls, both who had been listening to us talk, immediately spoke up, "Cool! Wheelchairs aren't cool!!" Then a lively debate happening. Mom didn't enter in, she just listened to me and to her kids. I explained about how much fun it was to go down hills and to quickly turn in a circle and to get your wheels wet and then draw on pavement. The conceded that some of that did sound found.

I got a little more serious, while keeping it light, and I told them that my wheelchair set me free and said, "If that's not cool, I don't know what is?" The freedom idea caught them and I knew they understood. Then we make an awkward turn into an awkward parking lot and the bus rocks. I wondered if they were home now but I didn't think so because of their reaction to the rolling of the bus.

The driver gets out and an older gentleman, using a walker due to a life long disability, struggled up the ramp. He got on, grinned at all of us and made his was to the back to sit in one of the seats in the very back. It turns out he is a teacher and he entertains himself by chatting with the girls. He has a real ease with them and the fact that he's probably 70 years older than the girls didn't matter. They chatted with him about school and other stuff.

Then he said, "Which one of you takes care of your mother?" The woman beside me, the girls mom, turned and looked at me in shock. The girls said, almost at the same time, like they've said it before, "We don't take care of her, she takes care of us." He pushed a bit and they acknowledged that there were things the did to help out. Finally he said, "Well, if you've not taking care of her now you will be one day, so you have to practice."

We'd gone from "wheelchairs are cool" to "people in wheelchairs are burdens," in the matters of moments and both messages were given by disabled people to these children. Their mother, shushed them when they began discussing, 'cool or burden' in the back between themselves.' "We'll talk about this at home she said," with an anger that I knew didn't stem from anything the girls had done.

We pulled into the banquet hall and I said my goodbye's. I rode down the ramp saying to the girls as I got off, "See, cool?"

Future? International Day of Disabled People

As I was thinking about today, International Day of Disabled Persons I came across a link that completely turned around my thinking. The theme this year was about the future. I hadn't read the theme closely but I was happily thinking about tomorrow's tomorrow and what that might look like for disabled people.

But, the constant devaluation of the lives to people with disabilities to the point where our murder isn't murder, where we aren't worthy enough for our lives to be considered stolen from us. I thought that really, people with disabilities don't have the luxury of 'future' when the present and the past are still so horrific.

Where millions of people with disabilities are still locked away in institutions.

Where our skin is shocked as punishment and our hunger used as a motivator for good behaviour.

Where our deaths are measured, not in tears shed but in dollars saved.

Where we are never really guaranteed freedom, or equality, or opportunity.

Where the pursuit of happiness begins up a set of stairs.

We can't get to future. We can't get to tomorrow. We still have to still the voices of today and squelch the practices of yesterday. We have to fight bigotry born of ignorance and hatred. We have to demand space, we can't even imagine safe space yet, that's, perhaps the future they talk about.

I want the past to finally be the past.

I want the present to be catalogued and put away.

I want to leave my home secure in the knowledge that I will not suffer social violence and ignorant assumptions.

I want to open my mouth and have my words weighed equally with the words of others.

I want to breath freely, without the constriction in my chest from knowing that others, others like me, are caged, prosecuted and found guilty of the crime of difference.

I want the past to be the past.

I want to close the door.

I want to lock it.

I want to feel secure that some politician, some ethicist, some accountant, won't find the key and a head for that door at their first opportunity.

Future.

I don't have time for future.

The past is still taking all my time.

The Other Option

It was hard for him.

I was even harder for the staff.

And harder still for his parents.

But, oh my, was it worth it.

A discussion was happening about a fellow with an intellectual disability, regarding his future, in which a fairly major decision needed to be made. It was a decision that would alter the course of his life. Everyone was really concerned and everyone really cared about him and his well being. When this made it's way to my table my first question was, of course, "Well, what does he think about it?"

No one had an answer.

When pressed people were able to tell me what they thought he might think, but no one actually knew. I sensed embarrassment from everyone involved, we all do know better. But it's easy isn't it, to just subtly, and without meaning to, and certainly without malice, simply take control of another's life. And it's easy for people with disabilities to get used to riding the passenger seat as they journey from year to year.

So, the first decision was made.

Then the second.

It was first decided to ask him.

The second decision, was, simply, to listen to him.

Everyone expressed agreement amid a lot of concerns. Parents were worried he'd make the wrong decision. Staff were worried that he'd make a wrong decision. The clinician was worried the he'd make either of those two decisions when obviously a third option was the better choice. They all saw his life clearly and saw where he should be going. But each, if they were moving player pieces would be playing a different game.

But worried or not, he was asked.

And now he was worried. He knew what everyone wanted him to do, he knew everyone was at cross purposes but he knew that whatever he did, there would be those who disapproved and those who thought he did wrong and those who, maybe even, would be upset.

So.

He tried to opt out.

He tried to get the team to decide.

It was really, really, really, and I need to say again, really, hard for people to stand back. Give information, not opinions, and then only if asked.

Today.

He decided.

On his own.

Perhaps the very first decision he's ever made free of pressure, free of attempts to influence, free of any kind of influence.

It was hard for him.

And he did cry.

But.

Today he decided.

He chose a 4th option that no one had talked about. He chose something that fit him like a well tailored suit. He chose something that was so uniquely him that only he would have been able to see it hiding amongst the options offered to him.

Not everyone is completely happy.

But he is.

And he's proud too.

The only thing that everyone agreed on was that it was time.

Time for him to speak freely and take control.

He is 62 years old.

Quilts: World AIDS Day

We were surrounded by death, and memories and a sense of deep, deep, loss.

When we first entered the room we didn't understand what we were seeing. The accessible entrance is off to the side and back a bit. We saw that the room had large quilts hanging from the balcony above, effectively making a smaller room within the larger one. I rolled through a space between two quilts and then looked up.

And was punched in the gut.

These were quilts that were made, spanning about 10 years, to note the deaths and commemorate the lives of those who died during the AIDS epidemic. They were made as it was happening. The emotion and sentiment that rose from the words written in memory were those who were in the midst of a keening, angry kind of grief. I rode around and the first person, of many, who I recognized was Robert.

Robert.

A pain struck my heart when I realized that I had forgotten Robert. I hadn't thought of him for years. But seeing his picture, reading the words written to celebrate his life and mourn his loss, I was flooded with images in my mind. I remembered particularly the effort that Robert went into to plan a birthday party for Phil, his lover - they weren't allowed to marry in those days.

We all knew it would be Phil's last birthday. Phil a wonderful, gentle man, with a wicked sense of humour and who had loved Robert passionately. He pretended that he didn't know of the party. He knew how much it meant to Robert, and he fought to live until his birthday. And he did.

But the party had to be moved to the bedroom. Phil was too weak to leave his bed. But what a party we had. It was joyous. We partied as if it were the last party before the end of the world. Because we all knew that's exactly what it was. Phil, in his bed, looked like he was on a raft sailing to the edge of time. He was so small. His smile huge in a face of skin and bone. He took presents he would never use and thanked people. He understood that each gift represented, for each of us, a wish we had for his future, a future in which he would live and thrive, a future he didn't have but that we would give him if we could.

Phil died days after the party.

Robert a year or so later.

They were both gone.

In front of me was a picture of Robert, on a quilt that kept his memory alive, and warm, and real. I called Joe over to see the photo and the words written beside it. We stood together for a moment and then backed up to the middle of the room and turned, there were names and photographs of so many people, so many very young people. For a second we were back in time, back in the midst of death after death after death after death after death.

When we left the room within a room. When we left the room draped by sorrow and loss and lives celebrated long before they should have been, we entered a different world. A world that believes that AIDS isn't what it is and doesn't do what it does. A world that refused to acknowledge the reality of AIDS then and a world that refuses to acknowledge the reality of AIDS now.

It's World AIDS Day today.

And I remember a raft at the edge of time and a party at the end of the world. And I remember what that meant then and what that means now.

It's not much, but it's all I've got to give.

I remember.

Permission

Something happened to me today that's never happened to me before. I'm nearly 64 so that takes some doing. It was a simple thing really, but it took me aback.

We were in the line up at the grocery store, we both nodded to the woman working there as she is often assigned the accessible till. She is an older woman who speaks English well, though her accent, combined with the noise of the store, and I add reluctantly, my age means that I sometimes have to listen very carefully to hear what she is saying.

As she checked out our stuff I noticed that she had a locked display case holding for scratch and win lottery tickets. I am a sucker for an impulse buy so I asked her if I could have all four of the remaining tickets. She had to get a manager to come with a key, which she did, and the tickets were out and being scanned.

When we were done and the groceries were paid for, she picked up the tickets that I had asked for and ... Well let's start with what she didn't do. She didn't do what everyone else has ever done when I've been a victim of my impulses in the past, she didn't just hand them to Joe. Now, I never really noticed, we are together, he's closer to the cashier and handing them to him seemed natural. But, she didn't do that.

What did she do differently?

She looked at me and said, "Is it OK for me to give these to him?"

She enunciated very carefully every word, she wanted my permission to give lottery tickets to the person I was with.

I thanked her for asking and said that it was fine to give them to him. She smiled, said, "I thought it would be," and handed them to Joe.

She thought it would be acceptable to give them to Joe but even with that assumption she asked my permission first.

You might think that a small thing, maybe even to small to write about, but gosh it was big to me. I liked it. I liked being asked permission. I liked being put in the position of deciding what happened next.

So often I don't notice when assumptions are made and Joe is automatically deemed the responder, the receiver, the prime mover. And this was one of those times.

Not again though.

Not again.

Her Joke

"Hey Dave," she typed.

There are several people with intellectual disabilities that I know and keep in touch with through Facebook and Facebook messenger. Most of the time it's just quick check ins but sometimes it's more in depth than that. I recently had a discussion, for example, with a man who wanted to know the best way he could talk to his boss about being teased by co-workers. That turned into a fairly long discussion that is still, month's later, not quite done.

But then there is a woman with an intellectual disability who contacts me with jokes and horrible puns. I like her and I like the jokes but she knows that it's very, very hard to make me laugh. I smile, a lot, but I don't laugh much. Poor Joe, he laughs at everything and I laugh at nothing. It's our version of Jack Sprat and his wife. 

This time, she got me though.

With a really funny joke.

"What's plain language for 'Please leave me alone and let me do it myself?"

I liked the question when I first read it, without knowing the answer. I liked that the joke was a disability 'in joke' and that, more intimately, it was an 'in joke' between us. She constantly calls on me to use plain language when we chat, and she does it even when the language is very clear. She follows the question up with an LOL, or more commonly, LMFAO. 

Ha Ha, I didn't laugh.

So I expected a groaner as would be our history but instead I, Laughed Out Loud.

So, here it is ...

"What's plain language for 'Please leave me alone and let me do it myself."

"Fuck off?"

I laughed even as I typed it. 

Saucy. Cheeky. Vulgar. Funny. All wrapped up in a conversation that would have been impossible for me to have, because of technology and because of repressive practices, a mere few years ago.

Ain't it freaking grand.

Being Accessible

I went out shopping today to buy gifts for some people on my list. Joe was one of them, so Joe didn't come with me. My first stop was the Bay store near me, I knew exactly what I wanted, exactly where everything was and hoped to get in and out without fuss.

As it's the holidays it's no surprise that there are lots of things placed in the aisles but they were well spaced and I could easily navigate around them. This is a store where I've had several battles about placements of displays and I was cheered to see that they were there but they weren't in any way a hindrance.

But, as with many well made plans, it didn't go as I expected. The one section I really needed to go was completely impassable. I could see what I wanted but there was no way I could get even near it. Now I've shopped in this section before, I've gotten around easily, but not this time, and not because of the holiday. It was because construction and remodelling was underway and everything that was scrunched up together. Now I don't typically shop where it isn't accessible, but this struck me as a different and temporary situation.

There are many ways for a store to be accessible. I went to a clerk, who was on the phone to another department seeking information for the customers in front of me. When she'd answered their question and hung up the phone she turned to me. I explained that there was something I wanted but because construction made the area inaccessible I couldn't get to it.

She was out from behind that desk so quickly it was like she magically transported to the spot right beside me. We headed over and she brought me what I asked for and then when I said that I'd like to see a range of products matching the description, she went and got them for me and waited as I made my choices. I thanked her and she brushed away the thanks saying that it wasn't a 'problem to serve me.' I bought what I wanted and then headed to the next store.

Arriving there, I realized that I didn't have my glasses. I needed my glasses. I was stuck, I approached a young man and mentioned that there was something I wanted, that I knew the store had because I'd searched their inventory on line and I needed his help in finding it. He looked over to the area where I'd need to go and it was packed with shoppers. He offered me the choice to wait while he went to get it or for me to accompany him and we'd swim through the crowd. I chose to wait. He brought it, smiling, and told me that he'd grabbed the last one.

I thanked him. He too brushed it away. "I've only got a job because we've got customers," he said before heading off to help someone else.

I'm sure what happened today but every person I met today was accessible.

And, I liked it.

Casual Cruelty

It's disconcerting.

The casual cruelty that people are capable of, the easy way that some have with hate, the dismissal of the idea that the feelings of others matter, sometimes takes me aback. I know that the anonymity of the keyboard and screen allow people to say things that they may never say aloud. I know that people hide behind made up names and dressed up personalities. I get all that.

But still.

In recent days I've seen a real upsurge in the use of the portmanteau "libt*rd" in comment sections, usually in a discussion gone acrimonious. It's no surprise that I despise the use of the 'r word' in any form in any place. It is such an offensive and cowardly word. Years ago the BBC did a survey of disabled people to discover the most derogatory word about disability and the 'r word' was top of the list. This means that people with disabilities as a community, as a whole community, stated clearly, 'this is a word that we all find hurtful.'

But it doesn't matter, does it, what disabled people say about our own lives, about our own experiences and about the oppression that we experience on a daily basis. Our voice isn't part of the discussion even of the subject of disability. Even so, we had the opportunity to speak and we did, this is the word, which when tossed, hits the vulnerable parts of our hearts and souls. No one may have been listening but that doesn't mean that what was said didn't matter.

The use of 't*rd' in combination with any other word, used to make up a new word in which the 't*rd' part is the ultimate insult isn't new. I know that. But the uptick in that particular word is noticeable and, by and large, of course, by some conservatives or conservative minded people. The people who stand with the church and with God. The people who talk about morals and scruples. The people who see everything as black and white. Those people are the people who seem so comfortable with spewing hatred. Those are the people who seem so comfortable mocking people who they hurt. Those are the people who love to victimize others and then say that their victims are victims of their own thin skin, their own sensibilities or their own self righteousness.

I don't think the idea that calling names is wrong is new to anyone.

Ruby and Sadie new that name calling was hurtful at a very early age.

No one had a talk with them about it, they just knew.

Like we all know.

So, let's be clear people using this portmanteau know what they are doing and are doing it purposefully. They intend offense, they intend insult and they intend hurt.

Who are these people?

We don't know of course because they don't use their names.

They dub themselves with a made up moniker intended to sound cool, or tough, or hard. And yet, they are in hiding, which is exactly the antithesis of cool, or tough, or hard.

And because they are in hiding I don't know who they are.

I actually want to know who they are. Not to identify them, not to chase after them - which would probably frighten them silly, but to get a sense of 'why?' I don't get 'why.'

It strikes me that I don't know a single person that uses that kind of language. But, I fear that maybe I do, that maybe the person clicking on their keyboard as I click on mine, might be in the line up in front of me, on the sidewalk beside me, in the movie theatre munching popcorn two rows over. Maybe I'm in the presence of people who find cruelty an easy option. Maybe I'm in the presence of hate without knowing it. Maybe the world is a little less safe than I thought it was.

I don't find it hard work to avoid name calling.

I don't find it difficult to use respectful language.

I don't find myself working up a sweat to control my tongue even when I've lost control of my temper.

I just don't.

Because, when I was very young, I learned, in many ways,that name calling hurts. And I don't want to be hurtful.

Isn't it that easy?

I had thought so.

But, I guess not.

Rainbow Laces

This will not be a pleasant post.

I'm angry.

I read, today, about a 13 year old boy who committed suicide because of years and years of homophobic bullying. Most of his life he was tortured by social violence.

Bullying is social violence.

Understand that.

It's an act of violence that happens, rarely, in private.

It almost always has an audience.

Fuck.

I read, today, about some sports hero wearing rainbow laces to show solidarity with the LGBTI community. Yep, he got press. Yep, he got praise. Yep, what he did is nearly meaningless.

Like safety pins are nearly meaningless.

Like crosses around your neck on a chain are nearly meaningless.

Fuck.

I'm tired of symbols.

I'm tired of easy activism that is had with the click of a mouse.

So you like a post about racism.

So you re-post a poster about sexism.

So you write a comment denouncing homophobia.

Nearly fucking meaningless.

Rainbow laces won't save a boy from killing himself, at 13 fucking years old, because he'd been bullied because of his presumed sexuality for most of his life.

They won't.

They just fucking won't.

You know what will.

Someone stepping in and doing something.

Someone standing with him.

Someone sucking up the courage to take fucking action.

Enough with symbols, and likes, and re-posts. They are nearly meaningless. They are worse than meaningless, they make people feel like they've done something. They've taken a stand.

I said, 'nearly' meaningless, didn't I. Did you notice.

Because they are meaningful if they MEAN something. If they mean that because of that symbol you won't stand by as a group of teens surround a fat guy in a wheelchair taunting him with pig sounds. If they mean that you won't stand by when your own kids call something 'gay' as a pejorative. If they mean that you won't be silent when someone says 'but all lives matter.' If you won't DO SOME FUCKING THING.

Rainbow fucking laces.

Is a PRODUCT.

Safety pins.

Are a PRODUCT.

Crosses on chains.

Are a PRODUCT.

The word activist, when it's spoken begins with ACTIVE!

It's action.

Make those symbols mean something, make them mean action, make them mean that people who see them know you will not be silent. Make them mean that a 13 fucking year old kid will know they aren't alone, not because you are wearing them but because you are demonstrating, through bold action, that he is loved and valued and not fucking alone.

Not.

Fucking.

Alone.

A thirteen year old boy killed himself.

A story in a paper.

Appearing the same fucking day.

That some athlete dude ties his billion dollar shoes with rainbow laces.

And all I can do, when reading one story after the other, is fucking cry.

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.