Sunday, December 04, 2016

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?"

Saturday, December 03, 2016

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.

Thursday, December 01, 2016

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.

Wednesday, November 30, 2016

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.

Tuesday, November 29, 2016

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.

Monday, November 28, 2016

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.

Sunday, November 27, 2016

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.