The Foreverness of Belonging

Yesterday the Ruby and Sadie came for a visit. They had arrived excited because we had planned to go to "Hidden Figures" at the theatre across the road from us. We got in, claimed our seats and settled. A second or two later Joe and the girls headed out the pick up popcorn and drinks. Shortly after they left a woman arrived and sat one over from where Sadie was sitting.

I saw her only in the periphery of my vision because I'm one of those who enjoy the pre-show and even arrive early to be able to watch it. But, I could feel the atmosphere of the theatre changing, it grew colder and the tension rose. People began moving seats from rows immediately behind her. I turned to see a woman, substantially built, sitting in that seat, one over from Sadie, who was moving rapidly by swinging from side to side while rocking back and forth. She was seated perfectly because she needed one seat on either side of her to accommodate the size of her movements.

Then I looked back and saw that all eyes were on her. Several faces showed concern. I heard the word 'autistic' spoken several times, always in knowing tones. Maybe she was, maybe she wasn't, I'm not sure it should matter to anyone there. She is a woman who swings and rocks at the same time, she is a woman who needs a bit of physical space and a bit of psychological space, and we should simply let her have it. Like I have an accessible spot, she simply needed the same. I don't like people diagnosing me when they see me, I don't wish to do that to anyone else. My diagnosis doesn't matter, the accommodation of my needs does.

The more she moved, the more intensely people responded. Some couples were having quick, brusque chats and then getting up and leaving. Actually leaving the theatre. I worried that they'd complain and the woman, who made not a single sound, who would not be seen in the dark, would be asked to leave. If there were complaints, no action was taken, and for one of the first times in my life I was grateful for inaction and in fact felt that inaction on the part of the theatre was exactly the kind of action that needed to be taken.

Now there was no one sitting hear her except for us. I was at the end of the row, then sat my husband, then Ruby then Sadie. There was another person, at the far end of the row. He too sat just watching the pre-show. The ripple effect of her arrival subsided, but remember sometimes the ripple is cause by the rock, and sometimes it's caused by the water itself. This was one of those cases. She was just a woman going to the movies, they were those who had to work to cope with that fact.

The theatre was very, very, busy and several shows had been sold out, so I wasn't surprised that it took Joe and the kids a while to return with the goodies, but return they did. I hadn't thought about Ruby and Sadie. I hadn't thought about how they may react. And when I did, as they came back into the theatre I realized I had nothing to worry about. These are kids who embrace difference so completely that they simply accept that people around them will always be full of different kinds of differences.

Her movements were big. Her silence total.

The kids sat in their seats, chatted about the lobby and their popcorn and the ketchup flavouring they liked. Then, without them saying a word about the woman who moved with big movements a seat over from Sadie. The movie started.

I have written a lot about space this year. The space I need to be a part of the community. The physical space I need, the psychological space I need to simply be disabled and  be afforded the space do things in my own disabled way. Public space isn't owned by the non-disabled, even though the privileged amongst the non-disabled seem to feel they have the right to determine who is and who is not afforded space. No matter what people feel about entry into the space around them, their opinion has no effect on my rights. I belong. We belong. All of us.

Not only do we belong, we have a right to feel a sense of welcome. The community can't be a community without us for without us they are only an enclave. Community offers all of us the foreverness of belonging. Enclaves offers only belonging, for now. We, the different and discarded, something so big, that their tiny acts of welcome, can never repay, the security of their own place in the community that we create with our presence.

I wasn't proud of the girls for sitting one seat over from someone with different needs for space than my needs or their needs. I wasn't proud of them for not being a ripple because, in fact, a rock wasn't thrown. A woman, who rocked and swung at the same time, came into a movie theatre to see a movie. That's all that happened. And for all of us who stayed, for all of us who forgot she was there as we watched the movie, she simply had space to watch a movie and as a result we created for ourselves the foreveress of belonging.

May 2017 bring us all a sense of true belonging. May we fight constantly with actions of welcome. May we experience community in the truest sense of the word. Happy New Year Everyone Everywhere.

When Parents Parent

I was sitting at the top of a very long ramp. It takes a second to get my courage up. The mall nearest us is really done in two parts, one south of Bloor Street, the other North of Bloor Street. to get from one side to the other you obviously have to go under the street. This is accomplished by a short tunnel which is crossed in one of two ways. For those who walk there's 5 stairs up to the south side and 4 stairs up to the north. For wheelchair users, or for others who have difficulty with stairs, there is a long ramp down and then a level bit and then a long ramp up. They've named it as the access path, I think, because many people prefer using it and it can be hard for wheelchair users, in particular to access the ramp because of the people using it.

But, yesterday, it was free and I took a breath and plunged down. Now remember with my chair in the shop and my very old replacement scooter protesting winter, I'm in my manual chair. This means I fly down at incredible speed. A heavy weight on wheels free falling down a ramp is a thing of beauty. I hit the flat spot at the bottom and the speed that I'd gained carried me about a third the way up the far ramp. I grabbed hold of the handrails one either side as I came to a stop. Now, I need to pull myself the rest of the way. It's a decent distance, but I've done it before and I have the strength to do it.

Having the strength to do it doesn't mean that I easily pull myself up, it's work. I pull myself then my hands fly to grab on again before I roll back. I admit that I'm enjoying this. I know that this is a result of, now nearly a year, of working on my strength. I'm also enjoying the practical applications of the exercises I've been doing. There is a real world pay off, and this is it.

I am nearing the top. It feels steeper, it isn't but it still feels like I have to work that much harder. A little boy and his mom come into the tunnel and he sees me.

"Look at the fat man, mommy," he says.

She asks, "Do you know what I see?"

"What?" he asks curiously.

"A very strong man," she said, "see how he's pulling himself up the ramp, he'd need to be strong wouldn't he?"

The boy nods.

"Careful to look and see people before you say or think something about them," she said.

I crest the top, with the boy and his mother watching. I think she knew I wouldn't mind.

And truly, I didn't.

Living In My Heart

We'd had lunch and, unexpectedly, had nothing to do for about an hour before the bus came to get us. I'm using my manual chair a lot because my power chair is in the shop and my scooter needs a new battery. I can't afford to fix both and, right now, the priority is the power chair. (How can a battery for a wheelchair cost $1000? I don't get it.) I'm looking at this as an opportunity to further work on strength and distance so I asked if Joe would mind mucking around on the Internet via our phone while I 'lapped' the food court. He agreed and I set off.

It's not a big food court so when I was back in a few minutes we both laughed and I said that I was going to do several more. I went again and on the second lap I noticed a man with an intellectual disability trying to have his lunch. He was seated at the high tables that were set around the edge of the seating section and he was trying to ignore the girls who were pressing him for money. His focus on his food, his focus away from them was laser like. I pushed on by.

I picked up my speed heading round another time. When I got back they were pressing in on him. I slowed down and pushed right up and stopped only an inch or two in front of one of the girls, the one standing in front of him, the one in my path. That's all I did, I stopped. She, without ceasing the pressure on him to give up some cash, stepped out of my way. I turned my chair so I was still facing her. Now she considers me, "Do you know him?" she said pointing to the fellow with a disability who looked at me with relief in his eyes. "No, and neither do you," I said. It was clear that I wasn't leaving until they did though not another word was said. They left, he thanked me.

I rode around twice more, wanting to ensure that they didn't come back after I left. They didn't. on the second time around after the incident, he had packed up and left.

I'd like to make two points:

1) It doesn't take a lot of time to actually do something about bullying and intimidation of another person. Not only doesn't it take a lot of time, it takes a lot less time than doing nothing and feeling the guilt and self recrimination that we would all feel for not stepping up.

2) Just ignore it is not a strategy that works. It's taught so often to so many as a means of dealing with the routine social violence that people with difference and disability deal even though it's an epic fail as a strategy in the real world. Teach real solutions for living in the real world that have real effect.

On my way out, I rolled by one of the two girls involved in pressuring the disabled guy for money. She was with some kids her age hanging around a table. As I went by she called out "fat pig" and I turned and smiled at her. That startled her, it wasn't the effect that she expected her words to have. But, trust me, the fact that I held no value in her eyes was a fact that I didn't value in any way.  "I'd rather live in my heart than yours honey," I said. "Any day of the week." And then I turned and rolled towards the elevator.

Roy Gets it Wrong, Again

Have you ever found yourself in a situation where you simply stop being you and instead become a representative for every disabled person in the world. In fact, this isn't really about disability, women can easily be in a situation where they become all women, and gay people, all gay people, and God knows, black people, all black people. It is the nature of systemic bigotry that the lens with which you are viewed purposely leaves out the 'youness' in order to focus on your 'otherness.'

A couple weeks ago, Joe and I went to see "the Messiah" at Roy Thompson Hall. I go here warily as they often mess up disabled seating. But this is a yearly tradition that we love and it's worth the chance that 'this year they will get it right'. And they have, a couple times. But now it's literally 50/50 that we will go problem free.

So it begins with us going in to our seats. I see that two seats have been removed rather than one. That means, I think, either that there is another wheelchair user to sit next to me, or there's a problem. Joe takes his seat and immediately notices that his ticket number doesn't match the seat number. It's one over. He gets up immediately, in plenty of time for a problem to be fixed, and goes out to speak to an usher. The usher reassures him that he is in the right seat even though he has the wrong ticket for it. He comes back and tells me, and we are both tense as we wait for others to arrive.

Just as the lights go down an usher comes to us at the end of our row and leans over and tells Joe he is in the wrong seat. Joe protests that he reported it and was assured that he was where he was supposed to be. She states that there were people to be sat there and now cannot because I am where I am and he is where he is. Everyone around us hears this. And I stop being me and become 'the problem.' Oh she spoke to Joe about his seat, but believe me when I say, people hearing this are looking at fat old me in the wheelchair taking up too much space, and seeing the problem.

The lights are going down, the music about to begin and we are both feeling responsible for people being displaced and upset at being singled out as 'the problem' when the only problem was being disabled wanting to sit with my non-disabled husband at a show we wanted to see. Then, it suddenly gets a lot worse. The door opens again, and the same usher who blamed us for the Hall making a mistake, is back with three people, one of whom has a disability and is in a wheelchair.

Why she brought them down, knowing that there was no seating, I don't know. What they did do is stand there and discuss the problem in loud whispers disturbing everyone. We missed two arias during the time it took for them to discuss seating and turn around and leave. During this, everyone in our area is turned around angrily watching the muddle.  Angry stares don't stop with their exit, they continue for a few minutes as people's temper gradually subsides. Nope, not feeling a lot of love from those around me.

The intermission comes and, as a representative of all disabled people, I am peppered with questions about what was going on, people asked me as if I knew the other disabled person, because of course we all know each other. Then the usher domes back and we are told that I have to move over into 'my seat' and someone will come and install Joe's seat. We are told that 6 people had come together and they had to be split up because we were in their seats. Great. Nice to know that we were responsible for the displacement and splitting up of a group of friends. The seat is installed, I am moved over, Joe is in the newly installed seat.

We notice that the elderly woman in the wheelchair who entered shortly after the show began and was focus of that loud discussion, was waiting in the next section for a chair to be removed for her to have a space. Lots of fun at the hall for disabled people!

Once Joe is installed and I am moved over the usher comes to apologize. I do not accept the apology. This is a world class theatre and their confusion about disabled seating is simply unacceptable. But more. I told her that the anger and upset of those around us wasn't at the hall for messing up seats, it was at me as a disabled person for being out and taking up too much space. It was at the elderly woman in the wheelchair for causing a problem. It's not at the Hall for messing up seating for disabled people. It's never at the location and always at the person with a difference. "You folks have furthered the prejudice and bigotry that people carry about disability and that's not okay with me."

The Hall beings to fill again and the four displaced people, two of them were in their seats a couple over from Joe, join their friends. Yep ice cold reception from them. I don't blame them, they bought tickets as a group and the two of us are responsible for kicking them out of their seats. They don't think about a Hall error, that's too abstract, particularly when there are people and people with differences and disability to blame sitting right beside you. I was worried that Joe would get frostbite by the end of the show.

We leave.

I am exhausted by the experience.

The next day we get a call, I'm at work so Joe answers. Someone at the Hall must have heard of our upset and called to talk to us about it. They were lucky, they got Joe. It was explained that two seats were taken out so that I, as a wheelchair user, wouldn't be sitting near the top of the stairs. It was also explained that a message hadn't been effectively transmitted to the ushers to ask the six people to move one seat over and into a place that was reserved for them to be able to do that. Joe accepts the explanation and calls me.

I don't.

I tell him to call the guy back and tell him that Joe, the nice guy, isn't the one he needs to be dealing with. Joe does this. We still haven't talked though he's made a valiant effort to speak with me. I've been busy, he's been busy.

But.

What?

The solution isn't to sell two seats, one to us and one to another group, and then ask them all to move over. That continues the problem of communicating to a group of people that they have to defer to disabled people and our undue demand for space. This puts us in to the role of recipients of their understanding and their acts of charity.

I know, why not sell disabled seating to disabled people and non disabled seating to non disabled people? I know that's a radical thought.

For the record, both Joe and I thought that this performance of "the Messiah" was the best of all that we had seen. The soloists were astonishing.

You know how "the Messiah" performed miracles, like the feeding of the 5000, or the water into wine trick? Well, what would be a real miracle be to get disabled seating right at a performance at any of the big halls in Toronto. But, I suspect that raising the dead is a slightly easier task.

Colouring Book

Image description: A picture from a colouring book: a young girl sits in a wheelchair holding a basketball and smiling. The picture is coloured in and the colours used are blue green and orange. The artist who coloured the picture is a 7 year old girl and she has signed her name, "by Sadie".

On my birthday we chose to go to Boston Pizza, primarily because that's Ruby and Sadie's favourite restaurant. I mean, come on, they serve "bugs" on their children's menu - what's lunch without bug shaped pasta? As we settled in the waiter introduced himself and did a couple of magic tricks along with his intro. The girls, his intended audience, were captivated and delighted. In truth, we all were. He was good and entertaining us while getting the information we needed out.

After the order had been placed, the girls picked up the "distract them with activities so you can talk" book that Boston Pizza gives out to children. Sadie was sitting next to me and I watched as she took her book and opened it. The first page she came to was a colouring page, of a little girl, in a wheelchair, with a basketball and smiling.

I was thunderstruck.

So was Sadie.

"Look!" she said, glancing up at me to see if I noticed. "She's in a wheelchair and she's playing basketball." Sadie was simply describing the picture, it didn't surprise her that the little girl would be playing a sport, both girls have learned, from the time that they were babies, that people with disabilities live vital, active lives. What she'd also learned is that there is an 'invisibility' about disability. Movies show cut curbs and disabled parking spots, but almost never someone using either of those. She'd certainly never seen a colouring book page, in a restaurant give away kids book, that pictured a kid with a disability doing anything, let alone play basketball.

I asked her if I could have the book for a second to take a picture of the page so I could write about it. She looked at me aghast? "You don't want to have the page coloured so people can really see it?" Oops. I asked her to colour it for me and with her permission, I'd put it on my blog. The girls know my blog, they appear here quite regularly and view themselves as slightly famous because of it. She gave her permission and set about colouring. I watched her.

What a wonderful image!

I wondered who, in Corporate Office at Boston Pizza, decided to go ahead with this image. To present disability in such a natural way. To have the child not be 'victim' of their disability but living 'proudly' with her disability. It's amazing that one can show a picture of inclusion by featuring only one person.

And that smile!!

The smile on the face of the girl in the picture runs counter to the narrative that people have in their heads about disability. It's a direct challenge to see things differently. Children all over Canada (I don't know if this book was used internationally) would be colouring this picture and with every move of the crayon, they'd be getting a message about disability without anyone saying a single word. That's awesome. That makes Boston Pizza awesome.

Sadie watched me take the picture, she checked it on my phone to make sure that her work was captured properly. She give her personal thumbs up. I asked her why she was taking such care, she looked at the picture and said, "She looks nice, I like her, I want the picture to be nice."

And ... it is.

Madonna and Children

When we pulled into the disabled parking spot, she was already out of her car, in her chair and being pushed by her son. I only noted that they were talking and laughing, clearly anticipating the movie they were there to see. I got myself into my chair and rolled over to the curb cut, which is in poor shape and I need to go backwards over. Joe helped me and moments later we were in the theatre lobby. Joe went to get tickets and I hung around people watching.

I saw the woman in the wheelchair tense up and then heard why. Someone was going on about the "poor kid" and about how unfair it was that he was supporting her rather than the other way around. She said nothing, so I followed her lead. She was joined moments later by her husband and a younger son, they had come in different cars.

They were in the line for popcorn right in front of us and they were all struggling to decide what to have. It's amazing how difficult that can be for two little boys. Then, the younger boy took hold of the back of his mom's chair and pushed hard towards the theatre. I found out later that there was only one wheelchair spot in there and they headed to get it first. I understood, had I known, I'd have done it too. Just before the lights went down hubby and son came in laden with stuff to drink and to eat.

During the previews I thought about that statement, the one that hurt her, "that poor kid." I imagine if they'd known there was another child it would have been "those poor children." Sometimes I just don't know what people see when they see people with disabilities in relationship to the other people, or even, to the world. I don't know how she couldn't see a mother and a child helping each other out, a mother and child having fun together, a family supporting each other. A loving husband, a loving wife, loving parents and loving kids, how does that become "those poor kids?"

When the movie was over I went to the washroom and just after I closed the stall door, Dad and one of the kids came in. They were talking about going grocery shopping and what they needed. The boy didn't want to go, it wouldn't be, in the child's opinion, any fun. Dad then said, "How about I ask your mom to give you and your brother rides on her scooter when we're there?" The kid was immediately into it, "YEAH!"

"Nice kids," I said to the fellow who was washing his hands in the sink next to me. He beamed and said, "Great kids, they're great kids, we are so lucky." His pride in his children but the obvious inclusion of his wife in the 'we' spoke of his love of her and his pride in her as a parent.

"Those poor kids," went to a movie, with their family. They helped and were helped out. They obviously loved being all together.

I'll tell you the man or woman in the future that the boys marry are going to be very lucky. To have respect and helpfulness, kindness and reciprocity bred into their DNA from being needed in such a tangible way, to learn so young that their hands are never helpless and can always be helpful ... is an amazing start to life.

Here's to more "poor children" learning love as a practical thing you do as part of our world and our communities. Here's to children and families who find love and keep it strong.

They were the best example of what this season is all about. Love. Generosity of Spirit. Commitment. Kindness. Helpfulness. Love.

I just saw that I wrote "Love" twice by accident.

I'm leaving it that way.

To those who celebrate it: Merry Christmas!

To those who celebrate the festival of lights: Happy Hanukkah!

To those who celebrate Kwanzaa:  Habari Gani?

To everyone else: Happy Holidays!

An Angel Appeared

Photo description: An accidental photo taken by my phone, not me. In it Ruby is wearing a white dress and white angel wings, that she made herself. (There is no picture of Sadie because the school asked audience members not to post pictures on line that have children other than your own in them. All pictures with Sadie, even our group photo, has other children in the background. We agree with and won't violate the school's request to not post pictures of their students without express permission.)

We arrived at the school for the Christmas pageant at, it seemed, the same time as every other family. There was no parking left so Joe let me out at the front and helped me through the doors into the school. From there I pushed a short distance to the gym. I saw no one I knew so I rolled over to the back row, removed a chair, and made space for myself to wait for everyone else to arrive. I want to say, parenthetically, that when I saw the chairs that the audience would be sitting in I was doubly grateful for my wheelchair!

I settled in while wondering how far down the road Joe would have to go before he found a spot. Then, suddenly, beside me an angel appeared. I hadn't noticed her approach as I'd been looking around the gym imagining it full of kids and noise and fun. Ruby and Sadie both like playing in the gym, the stories they told began to take shape. When I turned to see Ruby all in white with angel wings I was startled at her seemingly magical appearance. Her shoes must have had very soft soles.

When I saw her I smiled and she reached forward and gave me a hug. A very public gesture of welcome, intended for me more than anyone else. I gave her a half hug back holding my hands, still in mucky gloves from the push through slush, away from her. She told me that she and her mother had made space for me up at the front and bid me follow her to the spot. I rolled behind her to a space, second row back. Marissa had saved spots for all of us. Ruby was supposed, at that moment to be with her class but she chose to stay back, make sure that all was well, and then as time got closer rushed off to join her class. Only moments later, she was back, bringing Joe by the hand to the seats. Then, she was gone.

We chatted with the family ahead of us, parents and grandparents of Sadie's best friend in school. We made room for Mike and Joss to make it to their seats. We were all there. And it started. It was wonderful. Watching kids who'd practiced get everything right. The spirit in the room sparkled. Families loving their kids,kids loving their families, all openly on display. Proud parents, proud kids, proud teachers made the air seem scented with pine. It was Christmas.

When it was over, Ruby and Sadie had done so well, we all chatted together. I asked if I could go up to see their classrooms and they both agreed eagerly. I went up the wheelchair elevator to the second floor and down behind Sadie, who dutifully pointed out where she put her coat and her stuff. Then, with care, pointed out where her best friend put her coat and her stuff. In the classroom she showed where she liked to sit and introduced me to her teacher, who she adores.

Her teacher said, "You must be Dave," and I agreed that I must be. I felt just a tad embarrassed because Sadie kind of misinterpreted my concern that the kids tease her because of me and my weight and my chair, into my concern about being teased there myself. She had, she informed me every time I've seen her over the last couple of weeks, that she'd told her teacher, and knowing Sadie, countless others, that I was to be safe in that school. Sadie has a real determination when it comes to things like that. I love that about her. I decided not to explain anything to the teacher, I didn't want to diminish or trivialize what Sadie had done. She took action. Good on her.

Then I followed Ruby down to her classroom but it was locked and I couldn't see in. She was a bit disappointed but showed a piece of her artwork on the wall. That was more than enough for all of us who had come along for the tour.

Almost everyone was gone now. Marissa and Joe went off in search of vehicles and the rest of us stayed with the girls. Before leaving the both made the rounds giving each of us a hug. They had wanted to let us know that they were glad we were all there.

I don't know why I stay away for so long.

Fear, in no matter what cause, is the enemy of joy.

But.

No more.

The Moment and The Meditation

(A short post for today. I had to be out early this morning. Got home from the Christmas pageant late. So no time to write. But a moment and a meditation from last night ...)

The Moment

We were sitting off to the side. I'm glad because if I'd been sitting anywhere else I would not have seen her. The curtain opened and then, one at a time, students came and stood, confidently, at the front on the stage. They had nearly finished, one full, strong line of kids, all looking excited and confident. Some giving in to the urge to wave to family and friends. Hands waved back and occasionally a "whoop" from a small group hidden in the darkness of the gym. Then, she came.

It was hard to see her because, although she held on to the arm of another student, she walked behind her. The final few students came, and even though she was hidden behind the student whose arm she held onto, they left her a space. They left her a chance to change her mind and come out of hiding. She didn't.

As I said, I could see her because of the angle of my view. She was the only kid with a disability that I saw in the pageant, but there may have been others with invisible disabilities. She had Down Syndrome and as the kids began to sing, she sang too, or, I should say, I saw her lips move, I don't know if she voiced the words, what I do know is that she joined in. I wished her forward. She stayed hidden.

Later when we went upstairs to see Ruby and Sadie's classroom, I ran into her in the hallway with her mother. Here she walked with the confidence she didn't show on stage. Here she didn't need her mother's arm. I slowed my chair and looked right at her and said, "I saw you on stage, you were great." She smiled in response.

Her mother said, "What do you say?"

She answered, "I know."

That cracked me up. What a great response. "Inside that girl," I thought to myself, "is a bundle of confidence. I hope I see it at next year's pageant."

The Meditation

Joe hadn't been with me when I had the brief and funny encounter with the young woman with Down Syndrome. This morning, over tea, I was telling him about it and laughing. As I was doing so I was picturing the event happening. When I tell stories like this I like to picture the scene and then simply describe what I'm seeing. So, I saw her all over again. I saw her hiding behind the student. Then, I saw her again, later in the hallway. I was able to put the two pictures beside each other. One a shy girl on stage. One a confident girl with her mother in the hallway.

I wondered.

I wondered if I had attributed her shyness to simply, her shyness. Had I seen her out of context of her disability? Should I ever see anyone with a disability outside the disability context? In the context of disability what do I know? I know, and there's a lot of research to back this up, that she is the most likely in that school to be teased, bullied and excluded. I'm not saying that that's what's happening there. Not at all. I'm just saying that the likelihood is, if there is any form of social violence (otherwise called bullying) she's at the top of list in terms of mathematical likelihood.

I also know, and this is from personal experience, that she is likely, in all social or public situations to be stared at. To be looked at with harsh, or judging, or pitying eyes. She will come to see the eyes of others as the most common weapon used against her self esteem and her enjoyment of simply being out. She, by virtue of her disability and her difference, is going to wish, on many occasions during her lifetime, to simply disappear to simply not be seen.

There was a space left for her by the other students. A space where she could have stepped into but chose not to ... was this a freely made choice ... was it a choice made out of shyness ... was it a decision made out of a learned response to the eyes of strangers ... I don't know.

There was a space, where she could have been.

There was a space, left for her.

Let's tell the truth, given that most people with Down Syndrome are freely chosen to be 'away' rather than 'here' by parents making the decision, there are spaces in playgrounds and classroom and workplaces. There are spaces that we can't see because no one holds them. She, she could step into an empty space, left for her in anticipation of a different decision.

A different decision.

That's what I hope she makes next year.

A different decision.

That's what I'm thankful her mother made.

But we can never forget that that shy girl, hiding behind a fellow student, lives in a world that believes that that space should never be filled, that opportunity never offered ... and that's a hard world to live in. That's a world where, it's reasonable to make the decision, for the moment, to hide safely tucked away. To disappear.

(um, that didn't end up short ... oops)

The Big Lift

On the 20th, they called. We were out shopping and Joe, who had answered, asked them if they could hold while we got in somewhere warm. They must have said that they'd wait because Joe bid me follow him into one of the few accessible stores on that part of Yonge Street. We found a place to stop and he handed the phone to me. It was the wheelchair repair place, the people who were to fix my flat tire. I answered to be told that the wheels were seized and impossible to be removed, they'd have to be cut off, then new ones needed to be ordered from the States.

How long? Over a month.

How much? Oh, my, that's a lot.

I hung up feeling devastated. Just devastated. I really use and really depend on that chair. My replacement scooter is old and has very limited range. We rolled out of the store where we'd taken shelter and were quiet, Joe reacted to the timing and the price, oh my the price, in the same way that I did. Silence seemed to be the only reasonable response.

We got home, got in, and made tea.

One thing we've learned from being in the UK was that nothing, nothing, can't be fixed by having a good cuppa tea. Putting the kettle on is prelude to calming down and thinking things through. We would have to adapt, and plan, and figure things out. It's the holidays, we have plans. We are determined that nothing would change. We'll do what we planned on doing.

Then Joe said, "And tomorrow is your birthday."

Yeah, happy freaking birthday.

I got up yesterday, early. Got on the bus. Rode to work. By the time I got there, I was determined. I was going to have a really happy birthday. We had plans. We were going to do things I really wanted to do with people I really wanted to do them with. Wheelchair broken or not. Cost outrageous, or not. Life is life and we're not promised a smooth ride.

So I did.

I had a happy birthday.

It took energy to lift my spirit. But I've been lifting weights for several months now. My arms are stronger. Now it's time to exercise my mental muscles, by lifting what would normally cause me a depression. I don't want it, I don't want the darkness to come.

This morning I could feel the tiredness that comes from a mental workout.

I'd lifted my spirits.

I'd had a genuine good time because I willed it.

That's a workout that's worth doing.

(Please know that I'm not suggesting that those of you who fight depression like I do only need to 'lift spirits', I know that's simplistic, this is very personal for just me and just about me. I'd never been able to do that before, and that gives me a little bit of hope. I have no idea if I'll be able to keep those spirits up or if the storm will come. All I know, is it hasn't come yet.)

64th Birthday

So, today I'm 64.

My older brother just wrote saying, "Don't do anything I wouldn't do and if you do don't let me see it on YouTube." I told him I live a boring life and though we have plans, we'll still be in bed by 8. Yep, we're living on the wild side!

I've been asked, fairly often, when people discover that I'm turning 64, if I'm going to retire. I keep giving the wrong answer. When I say that, no, I'd like to work for another 4 years and then reconsider, some look at like a child that got 2 + 2 wrong. I explain that I love my work, that it's a passion as well as a job, they nodded confused. When I explain that I may be old but that my ideas are still young, and I'm still working and thinking and growing and developing and that I want that process to continue, I've been told, but haven't you done enough? I explain that I'll know when I've done enough, I'll know when the ideas slow and the interest wanders, but right now, they are razor sharp. And get met with a little shake of the head before the conversation ends.

Others, the majority thankfully, congratulates me both on turning 64 and on still having something I want to achieve and things I want to say and stuff I need to write and ideas that I want to try out. I have a team of people that I work with that, as young people, are bursting with ideas and I've had the privilege of watching them grow and develop. See their ideas become reality. See their goals get met. It's wonderful.

My life has been one lived with purpose.

At times that has ground me down, but mostly it has led me on. I get asked new questions, to which I work to find new answers. Gone are the days of the institution, now are the days of community and, let me tell you, the work is both more challenging and more rewarding. My mind gets a workout every day. Every single day.

Not only that, look at where I get to go and who I get to meet. Last year, and this is an abbreviated list, I got to go to the Yukon, to San Diego, to Edmonton, to Boston, to Charlottetown, to Salem, and next year begins in Newcastle in England. It's not so much that I get to travel to these places, because travel with a disability has it's unique challenges, but that I get to go there and meet people and talk to people and I'm given a podium from which I can share ideas and approaches and a way of looking at the world and at disability and at service provision. Cool? or Cooler?

On top of that, Vita and the National Alliance for Direct Support Professionals let me moderate a webinar capable of reaching across the world, on subjects written in the International Journal of Direct Support Professionals. It's conversational with me interviewing the authors of the articles. It's like getting to go to school and having private discussions with the teacher and the whole class listening behind the door. My mind is always racing when we're done. I've learned so much. Cool? or Cooler?

So, yea, I'm  64 and looking for more.

That makes me, not matter what others say, a very lucky man.

A Moment

Joe and I make an annual pilgrimage down to the Roy Thomson Hall every December to see their production of Handel's oratorio "The Messiah" and we did so again last Sunday. There's more to tell about our attendance at the performance later, but I'd like to share a very personal story with you all. I also want you to know that I have Joe's permission to be really personal in the telling of this tale.

We were well into the second half of the program when I looked over at Joe. My chair was back a bit so I could see him easily and I loved what I saw. I love him, of course, but I also loved seeing him thoroughly enjoying himself. He knows every word of "The Messiah" and followed it without once looking at the libretto. I had this overwhelming urge, absolutely overwhelming.

But let me stop for a second.

Joe and I became a couple 47 years ago. Times were very different then. Danger, real danger, lurked around corners. We could, if discovered, be beaten to a pulp by thugs on the street. We could, if found out, lose our jobs and incomes. We could, if someone talked, be kicked out of our apartment. We lived in the era of silence and caution and desperate fear.

We learned to live two lives. One a performance for the straight world who demanded conformity to its norms and worship of its values; one a real life as our real selves in safe places that we found in the LGBTI community. In the straight world we lived constrained wearing a straight jacket. At home we could rest and be ourselves. But what happened in the outer world entered into our inner world. We knew that our affection and love for one another was dangerous, people could see it and even if they couldn't see it, they may sense it. It was our Achilles heel. And distance grew.

We learned to show affection in different ways, subtle ways that only we knew, we spoke a language of love without ever saying a word. It wasn't enough, but it became enough. It's something that still angers me. It's something I still can't speak about, even here, even now.

So we didn't and don't show public affection.

But the urge was overwhelming. I wanted to put my arm around him. I wanted him to feel my presence, my touch, and know that I loved him and that I loved being there with him. I wanted the moment to be ours. I wanted the moment to exists in real time, in real ways. There was a burning in my chest. I felt the fear of all those years. I felt the fear we felt when the bus we were in, at a gay event in another city, was surrounded and rocked by what seemed like hundreds of people. I felt the fear we felt when we were walking home in the dark, realizing we'd been followed from the bar, quickening our pace without showing signs of panic. I felt that fear. I felt it there.

"Ah, but we live in different times," you may tell me. Of course we do. But times be what they may, people remain stubbornly people. Where can we actually ever really feel safe? Where will we ever know the hearts and minds of those around us? Where will we know that we are fully and completely safe?

The fear didn't stop, but neither did the desire to put my arm around Joe.

So.

I did.

I know people noticed.

I braced myself for an impact that didn't come.

When the show was over we got in the car and drove home. We never talked about it. We had dinner. We went on to have a nice quiet evening at home. I said "Good night," to Joe and went to bed, he stayed up to wait for the call that would tell me the time my bus was expected in the morning.

I had almost nodded off when I heard the phone ring and heard the message regarding my pick up time. Then the room darkened as Joe shut off the lights and came to bed. I felt him settle down beside me, put his arm around me and said, "I liked it."

Shopping

Shopping during the holidays is something that most people abhor. I'm not most people. I like shopping, period. Any time, any where, I like shopping. The only proviso would be, I shop in real stores, not those Canadian Tire kind of stores. I was out looking for a present for Joe when I came across a woman who was shopping in the same area.

She looked at me and then the scooter with a 'You don't belong here' look on her face. I did some mental gymnastics to deal with her hostility and went about doing what I was doing. Twice. Yes, twice, I had to stop short, once throwing myself forward in my seat because of the sharpness of the halt. Why? She seemed to feel that she owned the space and didn't need to consider the needs of any other shopper and recklessly stepped right in front of my path.. Her disregard for others was further evidenced by her insisting that a cashier stop a transaction with another shopper to give her detailed information about something. Even after being told to wait just a moment, she pressed on. Her time, apparently was important.
She probably had redeeming qualities but she clearly kept them locked away to share only with those she valued.

I'd found what I wanted and then headed over to check out something that I've been waiting to go on sale for two years now. It wasn't on sale. Then I found a line up, got in it and waited. The present purchased, hidden in my wheelchair bag, and I was off to meet Joe. I'd sent him to the lobby where there are chairs placed under a skylight and which is a real gathering spot in my neighbourhood.

When I came out and headed over to Joe, she was there and she was on her phone. Her conversation animated and her voice cutting. I began to wonder how well and how deeply she'd hidden those redeeming qualities. Distracted walking is dangerous and, of course, she stepped in front of me. I wasn't anticipated it because as I was passing her she walk walking one way and then her voice escalated and she turned sharply and stepping in front of me.

This time she noticed me stop quickly causing me to fly forward in my seat. She covered the phone and hissed, "You need to be careful in that thing. You could have run into me." Now I was annoyed. "Lady, I am careful in this thing, I could have run into you several times today and I didn't. So I'm a good driver and I've got enough patience not to ram into people who believe that they own all the space around them."

She flipped me the bird!

Really?

I said, "That's all you got?" and started laughing. She mightn't have been the nicest person but when someone has a one fingered way to state their case they aren't even slightly fun to engage with.

So, I didn't.

I smiled and waved goodbye to her, still giggling.

An AV

We were having lunch an my friend Susan was telling us about visiting a brand new hotel. While there she noticed a thing or two about accessibility which made the place less safe for people with disabilities than for those without. Susan doesn't have a mobility disability but she said she'd learned about it from the conversations we've had over the years and from some of my rants on this blog.

I always like to hear that my writing has made an impact, that it brings people's attention to disability issues and concerns. That's kind of the point this blog and kind of the reason I began it all those years ago. So, of course it felt good. I was about to thank her for noticing, because noticing matters, but she wasn't finished.

She went on to say that even though she wasn't disabled and that the mobility issues that she wanted to raise wouldn't make a difference in her life, she knew that they would in others. Great. I like that.

Then: Why should disabled people have to carry the responsibility of bringing forward access issues? Those of us who are friends or family or even just aware, don't we have that responsibility too?

Then: I thought of you and wondered why it should be your job to speak up and be an activist when I have a voice and I have awareness. I realized I could speak up and maybe the end result would be that you wouldn't have to.

Then she told us about making the complaint and wondering after, like we all do in situations like these, if it made a difference.

And who knows?

Will her complaint matter?

Will access be thought about differently by the hotel and will action take place?

Again, who knows?

But does the complaint matter? Of course it does, every voice matters, every act of confrontation in any form matters. It matters because it means that, if the hotel employees didn't notice the issue before, they will now every time they come to work. Ultimately, in the long term that may make physical change in the hotel necessary. If only just to still the nagging, daily, realization of prejudice in concrete.

But it matters in a different way.

It matters to me.

It matters to feel that I have an ally.

And she has always been an ally, I know she gets it.

But now, I have an ally, with a voice.

And good heavens that feels good.

Not The Wheelchair

It's not about the wheelchair, I know that, so why was I taken by surprise? I've seen many pictures of dogs in wheelchairs, I've loved them and even used them as a banner for my Facebook page.  And what I liked about the pictures, besides the dog of course, was the wheelchair. The wheelchair is what made the picture special. The wheelchair is why those dogs' pictures go viral. The wheelchair is why they are talked about and fawned over. Me, I was part of the majority who saw the dog, nice I love dogs, in a WHEELCHAIR ISN'T THAT AWESOME. And, as I should have known I got it all wrong.

So, yes, I've seen many pictures of dogs in wheelchairs but I've never actually seen one. Not until driving home yesterday. The dog and her (I couldn't tell gender so I'm just going to 'she' her) owner crossed over in front of us as we sat at a red light. She wore a blue wrap around her waist that attached somehow to the wheelchair that allowed her to move. Even though she was a dog, and even though she was cute as hell, we all know that cuteness doesn't remove barriers. At the end of the crosswalk, the curb was blocked as whoever had ploughed the sidewalk, didn't plough the curb cut.

The dog had to pick her way carefully over the snow. That's when I noticed that the woman with her dog was holding two leads. One was attached to the collar and one was attached to a loop on the wheelchair. The dog tried a couple times, then looked over to her companion, at that point when the dog tried again the woman pulled on the back lead helping the wheelchair get over the small snowbank. Then they were on their way.

What was interesting to see as the walked by us, was that after the little assist at the curb cut, the dog and her companion just sailed on as normal. The wheelchair was doing what it was designed to do, make mobility possible for the disabled dog. The dog paid it no mind, it was just a tool. Her companion paid it no mind, it was just how her dog got around.

And then, right beside us, the dog bumped her head into the woman's calf and came to a stop. The woman laughed, I heard her say, "Alright," and then she bent down and nuzzled the dog laughing and the dogs tail was flapping wildly. They were happy in that moment.

The wheelchair was here, bouncing a bid from the movement of the tail. It made the moment possible but it wasn't a part of that moment. Anyone seeing it might have seen a WHEELCHAIR dog and missed a dog who was loved and who was capable of making her companion laugh until she cried.

The Question

It was crowded and I was getting off the elevator. I'm driving the old scooter because my chair is in for repair. As I'm still not quite familiar with the dimensions and the capability of the scooter, I turn down the speed when I am about to drive into a crowd. Particularly a crowd of people desperate to get on an elevator already having calculated that not everyone is going to make it. But for them to get on, I need to get off, it takes them longer than you might think to realize that I cannot get off with them standing blocking the way. I wait, patiently, because as a professional I've learned that skill, for them to have the realization. Then they do.

They parted like the Red Sea, just enough for me to drive carefully by. The tension was palpable because they wanted to race in and grab a place in the elevator, so they were just silently waiting and I was, on low speed setting slowly rolling out. A little boy who had been watching, said, "Mom why is that man on the scooter." Everyone heard him and all were curious as to her answer.

She said, "Some people use scooters and some people use wheelchairs to help them get around where they need to go." The kid wasn't satisfied, that was what mobility devises made possible not why do people need to use them, he asked again, "But why does he need to use one?" She answered, "I don't know why he uses one, but people who use them have difficulty with walking, some can't walk at all, some can walk a little but they can't walk long distances." Immediately, "But why?" She said, well you answer me this, "Why can you walk?" He said,"Because that's the way I am." She said, "Well, that's the way they are, same thing."

Then I was through and he crowd surged forward into the elevator.

Confession time, I expected less of her. I've heard the diagnosers of the world, without a lick of medical training, determine that my use of a wheelchair is due to weight and start explaining about fat and lazy people. I have also heard people use pity as a means to describe disability. She didn't go there either.

The kid got a great answer.

One without judgement or opinion.

One that asked him to think about himself in relationship to someone in a chair.

You are the way you are, they are the way they are - damn that was a good answer.

Shopping for More

Do you ever, stop, for a moment and consider your heart?

Do you ever have a second of doubt about your capacity for kindness?

Do you ever worry that you've become too busy or too preoccupied or too self important for the time it takes to be compassionate?

I was brittle today. Needlessly. In the moment, it felt right. It even felt good. I asserted myself, strongly, when, now that a couple of hours has given me perspective, it was unnecessary.

Years ago I was unkind when I didn't need to be. I said something hurtful because I could. And it felt good. The burden of that moment has never really left me. In moments, unsuspecting, her face will appear, unbidden, and I see shock and hurt written there.. She had expected something more of me and got something much less than she deserved. I knew it too. The enormity of what I did only became clear to me much, much, later. Time heals? Maybe, but it also takes accountability seriously.

I will apologize.

And I will mean it.

But apology really serves me more than it serves anyone else. Apology lets me off the hook. "I SAID I was sorry!" We all know by the time we are three or four that apology doesn't make a bruise fade any faster.

My bags are already full of moments of regret. Why do I keep shopping for more?

But I will apologize.

And I will mean it.

I will receive, I'm sure, a 'don't worry about it' or a 'it didn't really bother me at all,' and they will mean it.

And I know.

That it still matters.

Run

It was snowy and mucky out and as Joe parked the car I asked him if he'd push me into the mall so that my gloves didn't get wet. I know, I know my tires would be wet, but what wheelchair user doesn't know how to roll back and forth on welcome carpeting in order to dry off tires. You see, I had a plan.

When we are on the road, I get a lot of opportunity to push myself in my wheelchair. I've worked steadfastly over the last several months to get my strength up so that I could do it myself. I was worried that I'd loose that strength over the holidays. I've learned that the muscle groups you use to lift weights don't correspond exactly to those you use to push a wheelchair, or at least to push someone of my weight in a wheelchair.

We were to meet friends for lunch and we'd arranged to get there about an hour early so I could give myself a good hour of hard pushing. I was anxious to see if I still had the strength and endurance to do distance pushing, which is, for me, the hardest, even harder than going up a short grade or a curb cut. We were set.

Joe got my chair out and I got in it but instead of waiting for him to get everything else ready, I decided to push only on the outer rim and head towards the mall. We got the last disabled parking bay, the furthest of them from the mall, so it was a fair piece but I headed off anyways. It wasn't steep, but it was a steady grade up and I found my muscles settling into the push and buy the time Joe joined my I was puffing but refused his help. I knew I could easily make it in.

Then we oriented ourselves and headed off. There were a few things to shop for and Joe went to do that as I marathoned it around the mall. Now this is marathon for me not marathon for anyone else. I got up a good speed and luckily there enough stretches that I wasn't endangering myself or anyone else. I did have to steer around fellow shoppers but I managed that.

Of course, there was the occasional jerk in the mall, by the time I turned a corner and headed north, I saw that the next big turn was located by a Tim Hortons. I was motoring by this time, and frankly, had worked up a real sweat. A fellow coming towards me, must have seen the work I was putting in and said, "That doughnut sure has you in a hurry." Well, Ha Freaking Ha. I didn't say anything, not because I couldn't think of anything but because I wasn't there to do anything for anyone but myself. I was there to work my arms and keep my strength up.

I made it more than half way round the mall in about half an hour. It's a big mall. I felt good about it. But it was time to turn around and head to meet our friends for lunch. Joe was buying something so I headed off by myself knowing we'd meet up at the food court.

When we got in the car after lunch I said to Joe that I'd felt like I'd gone on my first run since being disabled. I didn't know that you could run in a wheelchair. But you can.

I just did it.

The Decision

They looked at us with expectant eyes. How can you refuse expectant eyes? Well, I have managed that for several years now. But, this time something was different. Ruby and Sadie have a Christmas Pageant coming up and, like every year before, we were invited to come. They had described, with great excitement and anticipation, what each of their classes were to perform, it was easy to see they were trying to pull us into the joy of it all and have us, both, accept.

Joe has been before.

I have never been.

I need to stop now and talk a little bit about the fact that words have impact. I need to remind you that purposeful and intentional hurt leaves bruises that never fade and wounds that will always, occasionally, weep. I am 63 years old, I will be 64 on the day of the pageant. And yet, in some ways, I am still a young boy who travelled through his childhood and youth as a soft, fat, non-masculine boy. I am still that boy who who woke nearly every morning with fear and anxiety about what the day would bring. Easily targeted, easily taunted, easily taken apart, bullies found myriad ways of making my life hell.

To this day.

To this very day.

If I hear someone laughing around me, my first gut reaction, is that they are laughing at me. Even though all these years later I know that this is seldom actually true, my gut reacts the way it reacts and it does so for a reason. I have lost the trust that I will ever be safe in this world.

And God, I love these kids.

They have been a gift to us and to our lives in ways that I cannot tell you.

I never want them hurt. I have explained to them that I haven't gone to school events because I fear that their love for me, their relationship with Joe and I, will bring them harm. I fear that the bullies in their school will use me, or us, to target them, to taunt them, to tease them. I fear that I will bring them pain.

And I can't have that.

I can't do that to them.

They know. I've told them. I don't go because I love them.

But every year, they ask.

And every year, they hope.

And this year, they asked again.

Sadie told me she would tell her teacher to make sure that I am safe and that people not tease me. I told her that I loved that she would do that but I wasn't worried that they would tease me. I was worried that they would tease her.

Ruby told me that there was nothing anyone could ever do that would make her feel ashamed of me or of her relationship with Joe and I. Nothing. She said it twice. Twice.

So they asked again.

And now I realize something. I have stayed away to keep them from hurt and now, its becoming clear that my staying away, my act of protection, has the ability to hurt them in a new and different way. Caring can look like not caring. Loving can look like not loving.

And I had a decision to make.

I've thought about it long and hard. Joe and I have talked about it. Last night I even prayed for advice.

I don't know if my prayer was answered but I rose knowing that I was going to go. That our presence there, together, with the rest of their family, mattered.

What happens after matters too.

But I cannot risk that my caution leads to a day that I fear, a day I hadn't thought about until I saw those expectant eyes.

The day they stop asking.

Whew

There are times when disability is simply exhausting. And I'm not even talking about simply the energy that it takes to manoeuvre in a world not created with you in mind, or dealing with the attitudes of those who feel that for the grace of God there they did not go. For me, this past couple of days, and looking at the calendar for the future, it's been a bout of planning and replanning and looking at this option and ruling out that possibility.

The break down of my wheelchair has made everything difficult. My scooter is really only to be used sparingly as it's really, really, really old and you can hear it working when it's driven. Though it's a sturdy machine, I don't want to over do it. For example, yesterday we had booked a ride down to the theatre where Joe and I and the girls were going to see 'Sleeping Beauty' a Holiday Panto but we'd not booked a ride back. We thought we'd all just walk home.

My flat tire chair would have no trouble with this, it isn't fazed by something like this, even though it's a long ride and uphill most of the way. But the scooter, the distance and the rise had me worried. I tried to get a ride with WheelTrans, last minute, and finally managed a ride that wasn't optimum for us, but it was sterling for the chair.

After we got home and the kids went back to their Dad's place, we had to sit and go through all our upcoming plans and figure out how we would manage, what changes we had to make and then decide if the energy needed was worth the effort. Happily we planned through it all and have strategies that allow us to make each event.

But it's work.

Really a lot of work.

There's a mental fatigue that comes from negotiating the world, even in the best of circumstances, with a disability - but wow, does that multiply quickly when a spanner is thrown into the works.

Three Omens

Well, that wasn't planned.

The whole day was organized, to the minute, but when they say "shit happens" they ain't far wrong. We were at the hairdressers where Ruby and Sadie and their Mom were getting their hair done. We dropped in to visit but there was a special reason we were there, Ruby had decided, long ago, to grow her hair and then have it cut off and donated to a charity that made free wigs for kids going through treatment for cancer.

The day didn't auger well. There were three omens. First, the elevator was broken down necessitating a ride round to a kind of weird entrance that's never comfortable to use. Second, when going around to that entrance we found that you could not longer open the door because the handle was gone and it was solidly locked. We went round and told security. Third when Joe opened the door for me, he had stayed and gone in so he could do just that, he told me that it was going to be tough getting in because the disabled alternate entrance was blocked full of stuff. And he wasn't kidding. It was hard to get through.

I think that's when it happened, but I'm not certain.

We got up to the salon and everyone was figuring out what kind of hairstyle Ruby would have after the donation was made. I parked off to the side and simply joined in from afar with opinions and ideas. It was fun. Then I tried to drive over to see something more closely and I thought I'd run over something or that there was a barrier on the floor.

Nope.

My tire was dead!

DEAD.

The day crumbled before our eyes.

Joe came and got the scooter we use as a back up. I still thank that woman who wanted her scooter gifted to a fellow fatty because it's been a life saver several times now. The battery hadn't been charged for a year but Joe had got it over and we hoped it would get me back. Mike, the kids dad, offered to help push my power chair back home. It was a bit difficult to detach the wheels so this could be done. We've not ever done that for the 7 years I've had the chair. But it was done and the three of us left the womenfolk and got the power chair and me home.

Now, we've had to rearrange all the furniture to make things fit. I'm writing this while waiting to see everyone fresh from the hairdressers.

I have time to do this now because the rest of the day, see it over there, the plans and activities lay in complete disarray.

Danger on the Bus

We were successfully on the bus. I had had the sole responsibility for getting the kids up, dressed, fed, and on the bus on time for our trip to see Joe sing in the church choir. We worked together as a well oiled machine. I was strapped down up front and the girls were asked to sit in the two back seats as we were picking up another wheelchair user who would require the back entrance to the bus. The girls understood that they were making room, they know about respecting the space that people need, and took their seats.

We picked up a lovely woman, fresh out of church, who chatted with us for a few blocks and then she waved a goodbye as she got off at home. We made another stop, this time picking up a mother and son, also on their way to church. She spoke briefly to me and introduced her son saying, "He can't say nothing, so don't expect conversation." She laughed as if she'd made a joke. Then she sat right at the back, near the girls.

Once the bus started I heard her whispering to both Ruby and Sadie, I said, loudly and clearly, "Please speak up, don't whisper to the kids." She stopped for a second, then started whispering again, this time more quickly. Again I said, "Speak up, don't whisper to the girls." I had almost said their names but realized that I didn't want her knowing them. She whispered again, after another brief stop, but louder this time because of the noise of the bus. I heard the word "website" and now was frantic for her to shut up. I didn't want her talking to Ruby and Sadie about any "website" to visit. She made noise as she looked through her purse for a card to give to the girls, presumably with the website on it. I said, "Stop!" But she didn't. The card was passed to Ruby.

We were at our stop now and Ruby and Sadie sprang from their seats and headed to the door at the front. I asked Ruby as she passed me if she had the card the woman had given her, she nodded and handed it to me. I asked if Sadie had a card too, she said 'No' and I suggested that she shouldn't visit websites that strangers suggest without an adult looking at them. She and Sadie nodded but the conversation was stalling them from what they wanted to to do, which was, get off the bus.

I got off as well and stopped to look at the card. It was from a religious group that is known for publicly proselytizing. I don't adhere to many of their beliefs, but respect their right to believe whatever they wish. I even respect those who stand on the street and thereby publicly identifying their faith.But faith that's whispered in the back of buses to children against the wish of their supervising adult, that I don't respect.

I respect you, you need to respect me.

Of course I wrote to the bus company about my concerns but was told that this is not an issue they can deal with in any meaningful way. I suspected that would be the case but felt that I needed to alert them in any case.

We've all talked about this and about how both kids could have spoken up when they first felt uncomfortable with the woman's whispers. But they, like many kids, identify stranger danger as being a male phenomenon, not a nice, old woman on a bus where they have always felt safe before.

But danger has many faces.

Danger doesn't have a single gender.

Danger isn't any particular age.

And for me, I know that next time, there will be two other voices protesting. That means the job is nearly done.

12 Days Dis Christmas

Please feel free to make suggestions for changes ... I'd like this to be fun and funny and accurate ... so I'm open to making changes:

12 Days Dis Christmas

On the first day of Christmas my true love gave to me:

an apartment I can poo in.

On the second day of Christmas my true love gave to me:

two grab bars

On the third day of Christmas my true love gave to me:

three wide aisles

On the fourth day of Christmas my true love gave to me:

Four auto doors

On the fifth day of Christmas my true love gave to me:

Five lovely ramps

On the sixth day of Christmas my true love gave to me:

Six pubs-a-kessible

On the seventh day of Christmas my true love gave to me:

Seven seating options

On the eighth day of Christmas my true love gave to me:

Eight clerks with normal voices

On the ninth day of Christmas my true love gave to me:

Nine inclusive schools

On the tenth day of Christmas my true love gave to me:

Ten roll in showers

On the eleventh day of Christmas my true love gave to me:

Eleven accessible buses

On the twelfth day of Christmas my true love gave to me:

What I really wanted ... just one piece of legislation, with teeth, that made these things my rights, not someone's gifts. 

A Gift or A Given

He arrived just as I was nearing the end of the aisle. Because of the displays a narrow passageway had been created. One person at a time would be able to make it through. I am expert now in knowing if my chair will fit through any particular space and was sure it would accommodate me. But he got there first and was standing blocking the passageway looking at something on the display.

I was in a bit of a rush and said to him politely ... let me pause here and state that I know how to modulate my voice to make a request of a non-disabled person ... it has to be a little bit 'Tiny Tim' and a little bit 'stranded waif' and a little bit 'poor weak thing' and a lot of 'I'd be so grateful' ... I know how to use that voice because I use it all the time just to make a request that people get out of my damn way. So, unpause ... I said to him politely, "Could I just slip through here please?"

He looks at me and is immediately annoyed. Maybe because I don't look like Tiny Tim or a Stranded Waif or a Poor Weak Thing, in any case, he said, "You'll have to wait, I'm shopping."

Now here's the thing, I'm not Tiny Tim or a Stranded Waif or a Poor Weak Thing and I'm not full of gratitude for people simply behaving in a civil manner when in public spaces, even though I use that voice to get people to move their carts or their kids or their asses out of my pathway. So, I said, in a much different voice, "Look, I'm only asking that you let me by, I'm not asking you to give up anything more than a moment or two, what's the big deal?"

The change in tone surprised him and said, "Why do you expect to be treated differently just because you are in a wheelchair, and by the way if you drop a bit of weight, you'd not need those wheels."

"OK, Dr. Jerk, MD. You've made a misdiagnosis my weight and my disability are separate issues. And here's the thing, I'm not asking for something special, you are blocking a pathway that the smallest of children would have to ask you to move. This wasn't a disabled request it's an anyone request. But not to worry, I'll back up and you won't have to be disturbed from living your life as an asshole."

He's mad now and says, "Alright, just get the fuck by," and he moves.

"No," I said, "I'll back up, you stay in asshole rut, and see where that takes you a few years from now."

"Don't call me an asshole and aren't you being an asshole for backing all the way back down the aisle when I've moved."

I'm further from him now and I stop, look at him, and say, "I want nothing from you. Nothing."

And there ended another moment in the pleasant life of being disabled and needing space in a world where disabled people live with space a gift rather than a given.

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.