Tuesday, December 06, 2016

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.

Monday, December 05, 2016

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.

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.


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.


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.


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.


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.


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


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.