Halloween

Several days ago I received an email from a reader who sent me this photo of a guy with a disability who incorporated his wheelchair into his costume. The picture delighted the fellow who sent it to me and I admit it delighted me too. I loved the 'outness' of the costume. I loved the sense of fun. I loved that there will be hundreds of people walking around thinking 'that's an awesome costume' with a wee bit of envy for the chair. How cool is that?

I love 'out' people with disabilities. Those with hot pink wheelchairs. Those with bright blue hearing aides. Those with neon yellow crutches. Those with high heels fitted on 'wooden legs'. I love that kind of stuff. Absolutely freaking love it. It's such a statement of personal self acceptance. It's such an 'in your face' attitude of 'if you're crippled and you know it stamp your foot' ... Too often we the disabled are expected to feel shame, you the non disabled are expected to react with pity. Shame and Pity along with their parents, Envy and Hatred, need to vacate the premises!

So move over Tiny Tim and make room for Darth Gimp and the new message ...

God Made Us, Every One!

Notice

Hi all, I'm about to head to the United Kingdom and to Ireland, I'm going to be in a variety of hotels and know already that some do not have easy internet access. I'll try to blog every day. I've already stacked up one for tomorrow so I can be assured of one then. After that I may be sporatic. I will try to write something daily. It may be much shorter ... it may not be possible at all ... I ask for your patience during the next three weeks.

Now pop on down to todays real post ...

Ta!

Seven Days In

I was waiting in line with a bag full of beer. It's the day before the day before Halloween and the place is decorated with delightfully scary ghosts and goblins. Several of the staff have on costumes. I noticed a fellow walking purposefully and quickly by, almost as if he was trying to avoid the eye of someone in the store. I notice these kinds of things! Turns out I was right. The clerk serving in the other aisle noticed the rushing figure and called out. The man was brought up short, hearing his name, and turned to come into the store. I could see he had rearranged his face from an 'oh, shit, caught' look to a 'delighted to see you' look.

The clerk made a joke that she hadn't seen him for awhile. He made some noises about being busy. She seemed completely oblivious to his discomfort and made another joke, 'the liquor industry called and they were worried about you'. He laughed. Another clerk called over, 'yeah and we were too, keeping well?' He said he was well. To distract the conversation he made a joke about their costumes. They both said that they liked dressing up for the holiday.

He made to leave and the clerk said, 'What no beer?'

He said, simply, 'No.'

Finally she noticed that he clearly wasn't being the 'him' she knew him to be and asked, 'You OK? Everything all right with the family, the kids?'

He said, 'You know what I'm going to be for Halloween this year?'

She was startled by this turn of conversation, thought he was avoiding the question but let it go. 'What's that?'

He lowered his voice but by now I was right at the next till. My cashier was being very quiet, we were all listening. 'My little girl, Anna, said, 'Daddy, you know what I think you should be for Halloween this year.' I said, 'What, honey.' She ran into her mom's and my room and came out with a big picture. It was the one we had from her 4th birthday. She pointed to me and said, 'Do you think you could be him again?' she was pointing to a picture of me holding her in my arms and laughing.' He stopped and looked away, embarrassed, I think by moist eyes. 'It's been a long time since I was that man. I think the journey back to him might be a long one. But I'm seven days in.'

He rushed out of the store wiping his eyes.

I was sniffing loudly as I carried the beer out of the store. I've decided that I want to be 'me' for Halloween this year too. I want to take off the costume self I wear all year round and put on my real self. I haven't started yet. But I promise to let you know when I'm seven days in.

Kum and Go: the gas station

We had a long drive, a very long drive, between Chicago and Grand Island, Nebraska. We must have somehow read the distance incorrectly because man those 10 hours were wicked. At first the scenery was lovely. Then it was occasionally nice. Then it was 'one freaking field after another'. Like a Roadrunner cartoon, it seemed like the same fields were maliciously passing us by.

The spirit of Halloween even entered our imagination. I had just closed the door of the car after having gone in to use the washroom. The wheelchair, as if guided by a wicked spirit hand, twisted left, twisted right, and then ran hell bent for leather at the car door behind which I was sitting screaming. It rammed against the car and was rolling back from the force only to be heading back towards me, quicker this time. Joe heard me screaming and ran over to stop the chair in it's bloodthirsty attack. The winds were wicked through that area and my wheelchair became possessed by the spirit of the wind. It was hard not to take it personally, like the chair was saying, 'would it hurt to loose a pound or two, huh, HUH?'

When it was next time for gas we ensured that we locked the chair whenever I was out of it. No more Stephen King experiences in the midst of cornfields. We were at a gas station called, oddly, 'kum and go' ... my first thought was of death - yeah, those two words describe what I would think to be the best way to leave this earth, kum ... and ... go.

It was a new store and there were two cut curbs to choose from. One into a restaurant, one into a convenience store. We entered the store and headed straight to the washroom. Back in the store, the aisle were wide and shopping was easy. We got everything we needed for the next part of the trip, if one could actually need jalapeno and process cheese roll ups that were fried crisp in a tortilla. (Maybe my wheelchair had a point.)

One of the staff helped us carry stuff to the car. She confessed that when she started there she thought the cut curbs were silly and the managers insistence that the aisles be wide enough for people in wheelchairs to get around were simply misguided (that's not exactly how she put it). Then I came into the store and she saw me leisurely pushing around the store going up and down aisles picking up stuff. She got it instantly, she said, 'Its just the way we can say 'welcome' to the store, 'glad you are here' ... isn't it.'

I told her that most stores did not have managers that insisted on welcome. My bet that if he is welcoming to me, he'll be welcoming to all, and probably be overall an good boss. She thought for a second, and said, 'you know he is, my husband says that Glen is kind right through.'

And that's it isn't it. Those with the capacity of welcome, the capacity to think of people yet to come and to prepare to make them comfortable, that's the indicator of someone with great soul and great heart. We're going to try and stop there on the way back for gas. We figure if he bothers to say welcome, we should stop and shop as a way of saying, 'thank you'.

Kum and Go, because of that experience, I will, as often as possible.

Thanks

Rolling Around In My Head has the honour to have won three blog awards. Surprisingly we came second as Best Blog in Canada, first as Best Personal Blog and first as Best Health Blog. I am pleased to note that Belinda at Whatever He Says came in second for Best Religion and Philosophy Blog, Shannon took silver in both best Family Blog and best Blog Post for her work on Half Soled Boots and Mike took silver as well for Shoot First in the Arts category. And of course, Lene, took the gold in best Chronic Illness Blog.

I know many of you voted for all of us in the awards and I want to take this opportunity to say thank you for you folks taking the time to vote. It means a lot that you bothered to vote for Rolling Around In My Head. I am proud of the blog and proud of the level of discussion that the posts generate. I wanted to have a blog that lead to a community that was supportive but also challenged me when I needed to be challenged.

It's weird to admit but these awards meant a lot to me and I wanted to win an award or two. It seemed to be a bit of validation for the work that goes into maintaining a daily blog. I shouldn't have needed more than the comments and the emails that the blog generates ... but there you have it, I'm shallow.

I'll be back tomorrow with a regular post ...

right now I just wanted to say, Thanks.

Magic Words Discovered

Well, all, I had pretty much decided to just move on from the topic and keep private what's private. Trouble is, I'm nearly 60 and don't really understand social media. Joe and I sung the 'magic words' which I adapted changing the word in the original 'lovely' to the name 'Ruby' and then posted it on YouTube. I figured then Ruby could just go and watch it with her parents while waiting for the book.

After it uploaded we called and through the amazing technologies available we were able to watch her watch the video. She thought the video was live and when we said, 'Hi Ruby' she called back, 'Hi'. She filled in the silences with responses. It was awesome. Best, she loved the song.

We'd emailed the words:

I'm OK with being me
There's no one I'd rather be
I've a peace within my heart
That your names can't break apart
I don't care what you say
You can't wreck my Ruby day

So that they would have them there. She's been practicing the words to the song and loves that it's 'just for her'. Terrific. We felt we'd been active and responded quickly with something that was fun without getting all heavy with her.

Now, here's the thing, I didn't realize that some people subscribed to my YouTube posts and when I got to the hotel this evening, there were a couple comments and a couple emails. So the cat is out of the bag.

One person wanted to link to the song on her blog, I asked her to give me an opportunity to share it here first.

Thanks all for your thoughts and opinions ... I appreciate, again, the tone of the discussion.

These are my magic words, and as others pointed out, they may not be yours, may not make sense to you, you may even think they are silly. But they mean something to me. They mean something to Ruby ... and besides ...

I've got a peace within my heart ...

A Question Posed

whattodowhattodowhattodo

I've had several comments and even more email about yesterday's post regarding Ruby being bullied. Most people want to know the magic words that I wanted to put into the story. Well, there's a story about the 'magic words'.

If you are a regular reader here you will know that I've written about being teased a lot as a child. My weight. My athletic cowess. My lack of manliness. All were fodder for bullies. Some days of my childhood were simply torture to endure. I got the 'sticks and stones' thing and it did nothing for me. I knew that confronting the bullies would lead to a shitkicking. I knew that I had to develop a kind of mental toughness.

So, I came up with a little rhyme that I would say to myself. It's a simple rhyme and, now that I look at it objectively, kind of childish. But it gave me strength. I never told anyone about it. I never shared it with a single soul. It was something that was just mine. It was then and is now precious to me. The idea of sharing it terrified me. If someone mocked it they would be mocking my way of survival. If someone laughed at it, it would be worse than the laughter I suffered as the brunt of jokes. So I kept it for 'just me'. I never even shared it with Joe.

And then when I heard that Ruby was getting teased, suddenly I wanted to share it. Suddenly it's childish nature seemed to fit with the situation. For the first time ever I wrote it down and emailed it to her.

But I wonder how vulnerable to make myself here on the blog. I've got terrific readers and the comment section here often has wonderful and respectful discussion. The discussion thread on 'Touchdowns' was terrific, really terrific. People disagreed with each other but did so with remarkable restraint. Even so, the thought of publishing it here on the blog chills me to the bone.

A question.

How do you share life strategies yet stay safe at the same time?

What would you do ... would you share ... how would you handle discussion or debate about something dear to you ... could you handle it?

What would you do if you were me? ... Help me decide.

Four!

Ruby is being bullied at school.

She is only 4.

This is pre kindergarten.

The bullying was discovered because she asked her dad, 'am I ugly daddy?' Mike was surprised at the question because Ruby doesn't tend to think of her attractiveness very often. He said, 'no, you are very pretty, why?' She then told him, as if she was confessing something wrong, that another girl at school whispers to her that she is ugly and that she should just shut up because ugly girls shouldn't talk.

Despite the fact that we do live in a world where people believe, on the whole, that ugly people shouldn't talk ... I was so angry that my spit dried up in my mouth. I could barely speak.

So Ruby was given some strategies to deal with the bullying, some ways to think about it and was encouraged to talk about it if it keeps happening. Moreover she was reassured about who she was and about how she was seen by the world.

She's four.

Four.

I knew going in that Ruby was going to face a social world wherein meanness would be part of her experience. But it would have been nice if she'd made it more than 5 weeks before having to deal with what's worst in human nature.

Four.

Ruby is used to getting cards from us in the mail. I'm going to cut this blog short because right now I've stopped everything to write a little story for Ruby that I want to go in the mail tomorrow.

It's called: Ruby And The Bully

It's about a little girl named Ruby who learns about teasing and bullying, about self worth, about hurtful people and about the 'magic words' that little girls can say. These magic words knit together to form an invisible shield so that mean words are powerless to get through.

I know it works.

I use the magic words often - they are surprisingly effective for me a big guy in a wheelchair so I'm sure they can protect a little girl who is, for heaven's sake, four.

LIFE, TOUCHDOWNS AND OTHER STORIES

Maybe I've got the heart of Scrooge and the soul of the Grinch, but I'm not a great lover of inspirational stories of faux achievement. Maybe my real disability is cynicism because I get a sense of collusion and cruelty rather than love and support. What am I talking about?

Let me explain.

I get a lot of emails regarding various stories about disability from newspapers and magazines. Many send me YouTube videos of an inspirational nature. I do appreciate getting these, I feel the gentle nudge to write about the story on the blog even if the person doesn't specifically ask. Sometimes the story is about something I hadn't heard of and something I want to write about. Sometimes it's not. But in either case I'm glad to know.

Over the last few days I've had several people send me a story about a young man with Down Syndrome. He apparently scored a touchdown at a high school game. As I understand the story, the touchdown was made possible because the 'regular' players of both teams set it up and allowed the goal to be made. The story as told seems to be about how wonderful it was for this young fellow to get the experience of scoring a touchdown and being cheered by the crowd. There is much talk about his self esteem.

But to me, the story isn't about him at all. His Down Syndrome is an accessory to the story of wonderful young sportsmen who 'gifted' him with a moment that 'he will remember' all his life. There is a lot of talk about how wonderful these sportsmen were, how generous and kind and thoughtful their action was. And maybe these all are terrific kids. And maybe there's something wrong with me. You see, I don't get it and I don't like it.

Self esteem needs to be based on what is real not what is pretended, on the truth of who you are and the truth of what you have not on the lies that others tell of you. I don't know who the kid with Down Syndrome is, and I'm avoiding this story purposefully, but I'm guessing he's got lots of 'goods' if he has so many people wanting to do him 'good'. I'm guessing he has lots of real attributes to be proud of, so many that he doesn't need a fake accomplishment gifted by a fake moment. I'm guessing that he's got enough personal 'sugar' such that he doesn't need a life sweetened by Splenda.

These stories seem to imply that people with Down Syndrome only have accomplishments that are manufactured by others and gifted by kindness. These accomplishments make the 'story' of Down Syndrome one of tragedy overcome by generosity. There is a hint, in all this, of cruelty, somehow. As if in cheering him they are kind of laughing at him and his innocent belief that he actually scored a touchdown, in a real game, in a real play. I sense hurt coming, big hurt. Hurt that comes from being tricked. Hurt that comes from being purposefully deceived. Hurt that could have been avoided. Hurt that does real damage. I see the brakes failing on his faith and imagine him hitting the wall of reality at 100 ks an hour. I hope he survives.

And yet what truly saddens me is that the 'real' story of Down Syndrome and people with Down Syndrome is much more dramatic. The 'real' story doesn't need dressing up in costume and playing pretend.

The real story is about kids with Down Syndrome finally being given the dignity of education, learning.

The real story is about kids with Down Syndrome finally being given the dignity of community, working.

The real story is about kids with Down Syndrome finally being given the dignity of relationships, loving.

The real story is about kids with Down Syndrome finally being given the dignity of worship, praying.

The real story is inspiring. But the real story is tough. To tell the real story you have to begin, not with a bunch of wonderful, generous, kind, saintly kids, but with a society that disallowed education, community, relationships, worship. To tell the real story you have to begin, not with a kid making a touchdown, but with the kid setting foot in school at all ... you have to tell of the battle of parents, of self advocate groups, of a movement to include kids with disabilities in their neighbourhood schools. Doubtless there were teachers and administrators there that day that one day fought against the inclusion of kids with Down Syndrome in the school district. The real story is inspiring. The real story is victorious. The real story is about parental love, about personal courage, about the will and the determination of a people to go to school, to live in the community, to be part of the social world.

A kid with Down Syndrome makes a touchdown that isn't real and the world cheers them. Yet many people with Down Syndrome have scored 'life' touchdowns and people don't know who they are: Gretchen Josephson, Raymond Hu, Edward Barbanell, Sujeet Desai, Jacob Halpin. Many people with Down Syndrome have scored 'dream' touchdowns having gotten jobs, having moved into Independence, having gotten behind the wheel of a car, having married the love of their lives. But these stories are about personal victories by people with disabilities, not of victories as the result of the charity of warm hearted normals. These stories ask to change perception of disability rather than wallow in the superiority of normalcy. Not such a movie moment hmm?

We were going to the grocery store, Ruby was bubbling with energy. A young woman with Down Syndrome was on her way to work in the store as was evidenced by the uniform she was wearing. Ruby was asking me to race her but it was uphill. The woman with Down Syndrome said to me, as Ruby's obvious care provider at the moment. 'If you like I'll race with her up to the door.' Ruby yelled, 'Yes!' before I could. I simply nodded, glad that Ruby would have a distraction. The two of them raced towards the door. Both laughing. I saw that the woman checked her step and allowed Ruby to get there first. Ruby got to the door and screamed, 'I won!' The woman with Down Syndrome waited with her for a moment as we caught up.

I thanked her and Ruby said, 'I think you let me go first.' The woman blushed and said, 'I was just giving you practice for the day that you don't need help to win races.' Ruby giggled and the woman waved.

No cameras. No crowd. But ... TOUCHDOWN.

Joe Turns A Year Older!

Today is Joe's birthday.

Officially now, and for a whole two months, he is older than me.

Yep, I'm the chicken. He's the hawk.

I'm not going to get maudlin on you, it's not our way, it's ... unseemly. It's NQOCD! I'm wondering if any of you know what that means. Perhaps some of you from the UK will know the term. Long, long ago we had a friend who'd lived in London for years. She would say, cryptically about someone or something that it or they weren't NQOCD. Finally she acquiesced to our begging and told us that it means 'Not Quite Our Class, Dear'. We fell about the floor laughing.

And that's kind of how we've spent our lives.

I remarked to myself a few days ago about our NQOCD life. We had stopped at a duty free shop in the middle of nowhere just a few feet from a border where the guards saw maybe three cars a week. Loot was in the car and we were hungry. We pulled out from our cooler the left over tofurky from Thanksgiving and made a couple sandwiches. We chatted as Joe leaned his hip against the car and I sat in my wheelchair. I thought to myself, 'Gotta love a guy that loves a picnic.'

But I'm not getting maudlin.

I remarked to myself a couple of days ago while working on the computer here at my desk while Joe watched Turandot on DVD how nice it was to be able to share time and space with someone both involved in other things but both doing something together at the same time. I thought to myself 'Gotta love a guy that you can just 'be' with'

No, I'm not getting maudlin.

Today, I've got a whack of things to do for work. We are travelling a lot and the demands are high. But it's Joe's birthday so we're going out to a 5 hour opera!! Yikes. Joe has been worried sick about how we are going to sneak food into the theatre. It seems that my diabetes means that we have to have snacks for two to nibble on during the performance. I thought to myself as he put his diabolical plans together to sneak in some awesome old cheese and some way low carb crackers, 'Gotta love a guy who thinks diabetes is fun and that wheelchair bags are the perfect place to stash loot.'

I'm afraid that our friend, long past, must be looking down at us and saying that we still are NQOCD.

And she'd be right.

Thank God.

Hats Off to Ruby

I had a lot of time to think today. I waited nearly two hours for WheelTrans to pick me up. For the first 40 minutes or so, I enjoyed the wait, it was even productive. I was downstairs at work and chatting with some of the staff that were taking a smoke break. Things turned to work and it was OK because it all seemed so much easier, so much friendlier being outside in the sun. But they eventually left and I eventually began to grow restless with the wait.

My mind turned to the last time I saw Ruby. Joe and I had bought her a green space monster Halloween touque and she just loved it. She had worn it to school and all the other kids loved it too. She told me that they all wanted to try it on but that she didn't let them.

I began to talk to her about sharing and then decided to simply shut up. She at that moment was really enjoying talking about the scary hat and I thought that lessons about sharing could wait. Truth to tell, I figured in a 'grandfatherly way' ... 'right now I'm just loving her love the hat we'd bought her - let her parents do the moral training'. Normally I'm more motivated than that for little life lessons but sometimes it's fun just to be fun. So that's what I did.

A little later her dad talked to her about sharing and Ruby looked at him like he had the 5 eyes. But she paid attention even though her face was set to 'off'. I began to think that I should intervene and say something too but again decided to just let it go. Now it was kind of an instinct thinking 'I'm not getting something here.'

As I thought about it sitting and waiting I realized two things. First, I'm really pleased that she can stand up to peer pressure and simply say 'no' when she doesn't want to do something, doesn't want to share something. Second, the touque is such that you pull it down over your face and cover your nose with it. I don't think I'd WANT to wear it again if it made the rounds of 20 other kids. Could you imagine the build up of child slime on the inside of the hat. If I'd been thinking clearly, I'd have realized that the hat, in the way it was constructed, made it kind of a 'private' thing that you DON'T share with everyone. As it turned out she let them all touch it, pass it around and look at it, she just wouldn't let them put it on.

Pretty good call.

I realized that sometimes I'm so anxious to instill my values that what I would end up instilling aren't my values at all. Knowing when to shut up may be the most difficult thing to learn for a parent or care provider. Knowing when to let go and let the other person make a free and independent decision without fear of lecturing, moralizing or correction - is a skill.

I'm glad that I just kept my mouth shut.

I got home and Ruby called to tell us she'd got her Halloween card - complete with a bit of money, which she promptly told me she was going to share with her sister.

Seems she understands sharing well. Money, yep. Hats that go over noses, nope. Good call.

Hot Buttered ...

I've seen her often. She walks with a walker and it looks like each step causes her pain. But she's out there with the basket of her walker full of shopping bags with groceries or stuff from the pharmacy pretty much every afternoon. She has a shiny red walker that she leans on heavily. It seems to be so much a part of her that I can't imagine her without it. I noticed, the first time that I saw it, that the walker had a comfortable looking seat, which I'd never seen her use.

Until today.

It was a beautiful and crisp fall afternoon. The sky was winter blue and the sun shone high in the sky. Everyone wore sweaters or light jackets and walked with rosy cheeks. Joe and I were chatting easily about just stuff. Thoughts and ideas that crossed our minds were shared effortlessly. It was the kind of day made for a brisk walk. We could just see the top of our apartment building peeking over the tops of the buildings on the other side of the street. I started thinking about hot chocolate. Joe started thinking about an afternoon beer.

Then I saw her.

She was seated on her walker. Her legs were crossed comfortably and she was pulling apart a hot muffin she'd bought from a shop on the street. Steam rose from the muffin and she balanced the muffin on her knee while she pulled apart one of those small tubs of butter. She had a plastic knife in her hand with which she slathered the butter onto the hot muffin. Even from my vantage point coming up the street I could see the butter melt into the hot muffin.

And then ...

She took a delicate bite of the hot muffin. Her whole body reacted to the taste. She leaned against the side of the seat and closed her eyes. It was such a wonderful moment of private sensuousness. It was a moment that gave the lie to the stereotype of life with disability as a life without pleasure, a life without joy. It was a moment that made every step she took from home to shop worthwhile. There was nothing about her, in that moment, that one could pity - indeed it was a moment to envy.

People selectively hear what they want to hear about disability.

People selectively see what they want to see when someone with a disability passes by.

Disability means moving differently, doing differently, managing differently. Yeah, it's all that.

But hot buttered muffins on cool fall days - remember, it's that too.

Curbing Anger: Daring Difference

Jack Bolton

Andrew Griffin

Nathan Marshall

Walk free.

What they did defies understanding. Maybe it just defies MY understanding. For three days they tortured a young 17 year old man with autism. The list of what they did is astonishing in its length, in its cruelty, and (it must be said) in its creativity. Here's a brief survey of what a teen boy with autism suffered at the hands of his tormentors.

they kicked him

they stomped on his head

they beat him with a tennis racket

they threw him down a steep embankment

they pelted him with dog shit

they used sandpaper to scrape the skin off his arms and legs

they punched him repeatedly in the chest

they covered his genitals with adhesive tape and ripped it off

they filmed their abuse on cell phones

they laughed and joked while they tortured a young man who begged to be let alone

Then there's the judge. One Jonathan Geake. I refuse to call him 'his honour' for reasons that will become immediately apparent. The judge sentenced these toughs, these youth, to three months with a curfew and 80 hours of community service. They walked free. The young man with autism fled in terror and now lives in another part of the country coping as best he can with the hideous after effects of his torture.

The newspaper reports were astonished at the sentence. I wasn't. Crimes against people with disabilities aren't taken seriously. People with disabilities aren't taken seriously. While somewhere I read that they boys felt 'remorse', I also read that they did this because they were bored.

Bored.

BORED.

'Hey guys, I'm feeling a bit bored, how about we beat and torture a guy with autism for a bit of sport?'

At first I made a list of what they could do next time they were bored:

1) go searching their characters for 'kindness', I figured that should take them, um a lifetime

2) fry some bacon and then close their eyes and imagine their souls frying in hell, that's good for maybe twenty minutes

3) play 'punch buggy' with each other's heads in a VW dealership, I'd pay to watch that

Then I thought, I'm just trying to verbal beat these guys up because they physically beat up their victim. Of what useful purpose does this serve? They will never read this blog, but if they did, I'd want them to go away with some ideas that would serve them well. What matters it to them that I'm really, really angry about what they did? So then I thought that maybe they could ...

1) use this moment for some sober second thought: is this really the path you want to be following? is this really the person you want to become? is this really the life you want to examine when you lay on your deathbed? Change is possible. Begin change.

2) refuse to play victim: you are all becoming men. Be men. Be ready and capable of taking responsibility for your actions. Don't spend time looking for excuses and then reclassifying them into 'reasons'. One of the meanest men I know says that he was abused as a kid, this seems to give him a free pass to be a horrid, horrid person. Life may have dealt you a tough hand, I don't know, but you play that hand. Your decisions are yours and yours alone.

3) notice kindness: see what kindness does to faces. See the effect that taking a moment to be patient or thoughtful has on both the giver and the receiver. See the change that kindness brings. Be brave enough to be compassionate.

4) dare to be different: open yourself up to risk of ridicule. If someone can endure three days of torture, certainly you can endure the stares of incredulity that will come your way when you decide to walk a different path, take a different attitude. Different is cool. Cruelty is, I hate to say it, ultimately simply boring.

You will notice, Andrew and Jack and Nathan, should you ever read this, that I curbed my temper, I curbed my need to simply lash out at you. Don't for a minute think that I'm not angry, that I'm not outraged. But I am an adult. I am a man. Temper is mine to control. I dare to kindness. Even when it is undeserved. I dare to hope. Even when it is unlikely. I dare to reach out. Even when doing so terrifies me.

That, boys, is what men do.

JackAss

We went to see Jackass in 3D. You haven't lived until you've seen poop in 3D! The movie, for those who don't know, is simply a bunch of outrageous stunts as performed by a group of 'men' who just won't grow up. It's wildly funny. Completely profane. And funny. Really, really funny. Occasionally it's so gross that viewers have to work hard to swallow down surging vomit at the back of the throat. Simply to say, great time for a guy.

Johnny Knoxville a while back made a YouTube video with Edward Barbanell, an actor with Down Syndrome, regarding the 'r' word. Knoxville, who has young fans all over the world, had the courage to state outright that he would never use that word. He makes it clear that Edward, with whom he co-starred in 'the Ringer', was a friend of his and that hateful words referring to disability would hurt someone he cared about. Courage to fly against the wind might be Knoxville's best stunt.

If you go to the movie stay through the credits at the end. Barbanell makes an appearance to announce a stunt by saying that they were 'going to do some stupid shit with a plunger'. I near cheered. There he was right along with the guys being part of silliness.

It's rare to see a celebrity take a personal stance that involved changing behaviour not simply 'raising awareness' or 'giving money'. It's rare to see a celebrity defy the mores of his time and his culture in deference to the wishes of a friend. It's rare to see character. Particularly character from someone who makes a movie that delights in poop humour.

Johnny Knoxville, good on you.

I couldn't watch all of the film.

But I wasn't afraid to listen to it.

Hello Hoi, I'm Polloi

Four times!

That's FOUR!!!!

We went out to the movies this afternoon and four times I had to either shout to be heard or touch someone to be noticed. In each instance the folks were standing blocking my way, in fact blocking the way of anyone who needed to pass by. In each instance, either of raised voice or touched shoulder, the individual was startled to annoyance at my interruption. In each instance the individual was in deep communion with self - with a closed off world.

Two of the individuals were listening to something plugged into their ears while texting on the phone. Two of the individuals were in deep conversations with friends, near clones of themselves. They were, in other words, either clicked on or cliqued in. They had made their worlds as small as it's possible to be.

Disability woke me to the world.

Really.

It did.

When you move differently, you need to pay attention to where you are going and how you are getting there. You need to be hyper vigilant so that you don't drive off curbs, over feet or into trees. You need to pay attention. There is a lot of time spent taking care of self, taking care for others, taking focus off the teeny tiny world of 'me' and seeing instead the larger social world.

When you need to wait for others, you begin to pay attention to what's going on - simply to amuse yourself and while away the time. Waiting for the car to be brought round, waiting while Joe runs into a store, waiting for the bus to come - there's lots of waiting in my life now. Which means a lot of watching. A lot of being pulled out of my little world of self into the larger world of others.

Even before disability, though, I liked going out to be ... out. Being outside, being out amongst others, being part of a much larger social pack - I've always enjoyed that. I've never been able, even when sick, to say in the house for more than a day or the most two. After a wee while indoors my skin seems to need fresh air, I need to be 'outside' of my place, 'outside' of my thoughts, 'outside' of my teeny tiny world of self. Disability just ratcheted that up a notch or two.

But these days it seems that people take their teeny tiny world with them. They really don't want to be interacting with the hoi polloi. They don't want to be pulled out of the world of 'me' into the world of 'thee'. So when I call to them in a normal speaking voice, they don't hear me. The pods in their ears block my sound, the clods in their sphere block any communication at all. I'm left with either shouting or touching. Neither are my preferred way of getting a message across but what do you do?

Years ago I marched and shouted 'out of the closet and into the street' ... perhaps that's when all of the rest went into retreat. Or it seems so, because now when I'm in the street it seems I'm completely and entirely, alone.

Fingerprints

Sharp eyed readers will have noticed that there was no blog yesterday. We got home from the lecture tour late on Friday night. Too late to write a blog. My body clock woke me up at a little later than typical time, just after 4 in the morning. I sat looking at a blank screen and realized I had nothing to write and less than nothing in the way of energy to write it with. All day I felt guilty about not posting, but not guilty enough to motivate me to sit down and write a late post. Instead we watched the last Jonathon Creek DVD and started in on Season Five of Supernatural. That along with tea with friends and making a hearty fall soup. It was a nice day.

We started the day with Joe returning the rental car and with me hopping in my power chair and going up to do some banking. As always, being home means having the maximum amount of mobility. Having an apartment adapted to my needs helps, having the power chair helps too ... but there is something else. The neighbourhood shows the fingerprints of discussion, of complaint and even of protest.

I had to go to the bookstore and when entering, there is a wide pathway that was created as a result of my getting tired of struggling to get in and setting an appointment to see the manager, discussing the issue of accessibility with him, and getting a crucial piece of furniture moved. Over time I expected the passageway to return to its former position, it hasn't.

After getting groceries to make dinner, we went to the checkout. The one that has the wheelchair symbol, the one that is now always open. It took a couple of complaints, it took a threat of protest, but now, every time I've been in there the wheelchair aisle is always open. Last time I was there I sought out the manager who finally listened to me, when he saw me coming he had that 'oh no, what's he going to complain about now' look on his face. Instead I thanked him for listening and ensuring the change be made. He looked both surprised and relieved. But it's now open.

Even the drug store has cleared all of its aisles from bulky displays, this means that all of us with mobility devises can get around easily. Before they had only one aisle that was accessible. I had forgotten until Joe reminded me this evening of a discussion I'd had with the pharmacist about the number of people with disabilities combined with elderly users of walkers that use the store. We could get prescriptions but we could not shop. Magically, after that, the displays were moved.

Small changes, true, but changes that make my community more accessible and, well it has to be said, more like a community that includes me. It was nice to easily make my way through the day. Partly because access is a lovely thing but also partly to remind me that each time I made my presence and my concerns known, I'd not felt like it. I'd not felt like it mattered, I'd not felt that I mattered. It takes energy and persistence to make change, even small change - but when done, it's wonderful. Being here is easier for 'Dave now' because 'Dave then' was always persistent and occasionally abrasive.

I've got a huge complaint to make about something that happened while on the road, I was going to let it go. I didn't feel like I had the energy to sit down and write a letter of explanation and complaint. I didn't feel like it would matter. But then, I rode easily into the bookstore, I wandered the aisles of the pharmacy, I paid for my groceries at a till with a passageway designed for me and my chair. Voice matters, it may not matter immediately, but it will matter.

Silence is complicity in sameness.

And I don't want more of the same.

Tomorrow morning I'll rise into protest - if nothing else, it gives purpose to my day.

Getting the Vote Out

Today is the last day of voting for in the 'first round' ... I'll have to bug you again when the final round of voting is upon us. I've moved up this post to gently remind you to vote if you not yet voted.

Well, it's time for awards season. This year there are two Canadian Blog Awards, the first of which is a 'popular vote' award. In this one readers of blogs go and vote in various categories. I'm here to ask if you'll vote for Rolling Around in My Head which is nominated in three categories: best blog, health and personal. Too, regular readers will be familiar with niece Shannon who has been nominated for best Family blog for Half Soled Boots; too there'sBelinda who writes a faith blog, Whatever He Says, which is nominated for Best Religion or Philosophy blog and, of course theres Mike who has been nominated for Best Creative Arts blog for Shoot First. Too vote just visit Canadian Blog Awards to vote. You'll have to scroll a bit to find where to vote but it's there.

I'll admit, I'd like to make the next round so if you've got the time and the inclination, your vote would be terrific. I've already voted for Shan, Belinda and Mike ... join me there too if you can.

Thanks all.

It Depends on What 'Is' Is

"It is what it is."

I'm hearing this phrase everywhere these days. It seems to be almost like a verbal 'tic' that has caught on and is being used in all sorts of situations. Typically I hear it in reference to a situation that isn't perfect but well ... what can you do? There is something about the phrase that bothers me. I think it sounds a bit 'defeatist' to me.

Having a disability means being in lots of situations where things aren't perfect, in fact things are way far from perfect. Both one dimensional attitudes and three dimensional barriers constantly get in the way. I'm always having to choose to let things lay or 'play through' and protest. I read other bloggers with disabilities, I read other bloggers who have children with disabilities and I discover a whole world where 'it is what it is' simply is not acceptable.

I think it's easy to grow into laziness with the struggle for disability rights. So many people simply don't get why we demand access, why we aren't happy with the little bits of adaptions given us haphazardly by government or with resistance from retailers and with complete ignorance by architects and designers. So many people think we are a drain on the public purse, all of them forgetting that we too are 'public'. Often we receive pity, which is simply malice dressed up in a Halloween princess costume. Yet pity is supposed to be good enough. It is what it is, alright ... and what it 'is' pisses me off.

So I hereby suggest an alternative phrase for those of us who still are up for a bit of a fight: It is what it isn't yet.

Gas

We were getting gas. It took a second for both of to notice but we did, at exactly the same time. The white van ahead of us had it's side door open and a ramp lead down from the interior of the van to the pavement. Precisely when we noticed the ramp we saw a guy come out of the small pay booth in a wheelchair. He popped a wheelie from a stop position and then, with his feet in the air, used arms with muscles straining to lower himself down the step. It looked smooth, as if he was strong enough to control even the pull of gravity. Once down he continued to roll.

I looked for the cut curb, sure enough there was one. But gas stations seem to cut curbs only for the use of dollies to carry up wiper fluid which is deposited right at the top of the ramp, filling up all the space so that even those who walk need to step down to get around. It's like many smaller gas stations think that people with disabilities driving and wanting to pay are like unicorns - a hat rack imagined by government. It took no figuring to guess that this guy had gone up, the same way he came down. Sheer physical force.

He was with a man, I'd figure his father. He was also with a boy, I'd figure his son. They were chatting and the boy was laughing. I knew they weren't talking about access, about wiper fluid, about lousy curb cuts. Those subjects don't make small boys laugh. When they got to the van, the wheelchair guy rolled up the ramp easily, the boy followed him up the ramp and the older man got into the passenger seat. Then we watched as the ramp folded up and they drove away.

Others, we noticed, were watching too. All with a wee bit of awe in their eyes, I'm guessing it was in ours too. But what was very cool, wonderful actually, was that it wasn't there in his boy's eyes. It wasn't there in his father's eyes. They didn't see anything extraordinary, anything more or less than a son and a father. They were used to his regular every day competence. They were used to how he simply did what he did.

It's a wondrous thing to be different but become ordinary.

It's great that little boys see Dad as simply Dad. To step down a curb with feet while Dad stepped down with arms, and to not notice the difference.

It's great that fathers who probably cried at the news, get in the passenger seat of a car, and be driven into the future by a son he probably feared had none.

A Pop Quiz

A curtain.

What a wonderful idea.

I was in Atlantic City giving a lecture for the day there and went down to check the lecture hall in the hotel. I knew that they had arranged a ramped stage for me as they were anticipating a fairly large audience. My experience of these ramps is inconsistent. Sometimes they are flimsy and scary. Sometimes they are narrow, about as wide as a dolly. Sometimes they are perfectly suited for the job they were crafted for. So, as I was in Atlantic City I have to say it, it's a crap shoot.

Well, the ramp was just perfect, easy to use, a good width, a slow and easy rise. But what I liked about it was that it was set up behind a curtain. I sometimes feel that people with disabilities are on display and our movements somehow are cause for curiosity. I always get on stages really early so that I don't have to be cumbersome or clumsy in front of watcher/gawker types. I am a people watcher so I know that most are watching just because it's something to watch, no intrusion intended. Well, unintended does not mean unfelt.

I loved being able to get up and down from the stage in complete privacy. It worked perfectly for me. Interestingly though, I was asked by someone at the conference if I thought that the curtain was a way of 'closeting' my disability. As if it was something shameful that needed to be hidden away - rather than something to be out in plain view.

I admit to being flabbergasted. Clearly there are two ways to view every situation. I am wondering about all of you. Was the curtain a thing designed to give privacy or was it something which indicated the hiding way of shameful movement?

I truly would like your opinion.

Oh My

It may have been the most frightening conversation I have ever heard.

I know I'm going to get slammed for describing the two speakers, but I'm going to. They were both about 14, both very blond, both very pretty, both very slim. They were with a group of other young people and two chaperones but they had chosen to sit at a separate table and therefore were set apart from the general laughter and teenage 'shenanigans' at the other table. Joe and I were sitting at a table just a few feet from them and we were of the age and type to be invisible to pretty girls of 14.

They were, at first, talking about some girl at school who had not made the trip. Apparently she was a good friend but she had been disallowed to come by parents who 'didn't get it'. Then they turned to talking about another girl, one they didn't like, one who was also not there. They laughed about some of the mean tricks they'd played on her. They described her looks, her weight, and her 'brights' in unkind, unflattering and incredibly ugly terms. As they talked their faces changed, people don't seem to realize that ugly attitudes change features. A face in one light is pretty and soft, in another is hard with sharp features and cold eyes. These girls, as they spoke, became what they despised.

One of them then said of a teacher who had chastised them for their behaviour, 'She doesn't get it we don't do this because we hate her we do this because it's fun.'

I've never heard anything more frightening.

Now I'm going to chance it by describing something else. When they got up to leave, they were both wearing school jackets, both with the name of the name of the school. There were three words in that name, the last two were 'Christian Academy'. I was somehow surprised, I thought that maybe those schools would be exempt ... schools that focused on any faith ... where kids were taught basic values. But perhaps it takes more than values to put the brakes on devaluing others, maybe it also takes character.

A Note Through The Door

Our apartment building has one major design flaw. The stairwells at each end of the hallway descend, not to the lobby, but directly outside. The problem is that the doors open out but do not open in. There are no door handles on the outside. This means that people on the lower floors cannot choose to take the stairs up a flight or two to their apartments, they have to take the elevator. None of this ever entered my mind because, in my wheelchair (power or manual), the elevator is my only option.

The other day we got on the elevator with a pretty young University student who lives in the building. I know her character to be friendly so I took a moment to turn my chair around and back into the elevator. This takes a few seconds more than driving straight in, which I normally do because waiting a few seconds for me to turn and back in upsets most residents in the building. They live important lives where seconds really matter. I trusted my sense of her character to be OK with me getting in the way I prefer to get in.

She and Joe stood to the side and I was comfortably parked facing the door. She then pushed 2 and Joe pushed 5. Immediately she began to apologize for only riding one floor, she was worried about having to get me to pull out so she could get out of the elevator. We told her it was no concern to either of us. When we stopped on the second floor I pulled out of the elevator and she got off, again apologizing.

Forgetting myself, I reached out and touched her arm. She stopped, startled at the touch. I said, 'You reacted with kindness and patience when I took the time to back into the elevator. I appreciate the opportunity to react with kindness and patience when you needed to get off the elevator. We have thousands of decisions like these each day, every time we decide on kindness, I believe the world is changed. It becomes, on the whole, a nicer, gentler, place.' She smiled a quick smile and headed to her apartment, I backed back into the elevator car.

This morning, on rising, we found a note that had been dropped through our mail slot. Here is what it reads:

Ever since we shared a ride on the elevator, I was the woman who got off on the second floor, I've thought about what you said. Sometimes I feel like I do not have the capacity to make a difference in the world. I see greed and corruption and meanness about me and never felt I had the ability to effect any change at all. The brief conversation I had with you has challenged my belief in my own ability to make change. I admit to being uncomfortable with you both in the past. Gay people have never been part of my world, disabled people always made me uncomfortable and large people always kind of frightened me. I hate admitting all those things, but I want to be truthful. Then, when you touched me in the hallway and spoke to me about the decisions we make every day, how a moments kindness can affect the world in a small way, something happened inside me. I feel like I can bring kindness and patience to a world that needs more of each. You managed to teach me something that I believe will make a difference to the rest of my life. I want to thank you for that.

What I said, on the spur of the moment, I realized after I read her note, needs to become much more of my own way of life. I sometimes worry so much about larger social change that I forget the smaller acts of rebellion against selfishness and meanspiritedness. I can worry about the fate of others and come to not care about the feelings of neighbours. I don't want to be 'that guy'. I want to be the guy that this woman now thinks I am. Now there's a challenge.

A challenge perfect for Thanksgiving Day, wouldn't you say?

Goodyear for Good Guys

So we were at the Opera. Well, the opera in the Carousel Mall Movie Theatres in Syracuse. We'd just seen a Wagner opera when, co-incidentally, a Wagnerian tragedy struck. I picked up my footrest and the clamp flew into bits and pieces. I panicked for a moment but then Joe spotted a couple bits under the seats ahead of us. We waited until the place was free and then, with the help of an usher and a flashlight, found three of the four pieces. With a bit of magic and a bit of prayer, we got the footrest back on. Suddenly the rest of Thanksgiving weekend and the rest of the lecture trip seemed long and arduous. I tried not to cry but wanted to.

On our way back to the hotel, I noticed a 'quick oil change' place. We pulled in and spoke with one of the mechanics there. She looked at the pieces and said that they didn't have anything that would work for us. But, not to worry, she said as she pointed over to the Goodyear Tire place just behind them. Again we pulled in and I spoke to the guy who'd come out from the office to talk to me. I showed him the problem. He took it away and a few minutes later a young man with hands that looked like they worked very hard every day came and spoke to me. He said that he helped keep his Grandfather's wheelchair in good working order and thought he could get it fixed for me.

It was fiddly work but he really applied himself. At one point he came out and was concerned that it wasn't fitting right. He offered to get a couple of washers to make it a bit more secure. It was only then that Joe showed me another piece he'd found but didn't realize it was for the chair. We were both embarrassed after the fellow had already put a lot of work in, but I insisted Joe go and give him the part. He was relieved to get it, a few seconds later he was carrying the fixed piece out to me.

I asked him how much and he just waved and started to walk away, I called him back and gave him a few dollars to buy a beer. I appreciated his generosity with his time but people should be paid for the work they do. It's wonderful to find kindness and patience and understanding in places you'd least expect it.

So all of you who live in the Syracuse area, I totally recommend the Goodyear Tire place just below Carrier Circle on Thompson Road. They don't know about this recommendation, didn't ask for acknowledgement. But I'll tell you good people work there. They deserve the plug.

It's the least I can do. Thanks again Goodyear Guys!

Yikes, We're Four

Today is the fourth anniversary of Rolling Around in My Head. It's been an odd anniversary. First, knowing that I was going to write this I waited for a 'blog to happen' and when it did, it was one that disturbed me, one that I knew that I needed to write, but one that frightened me to write. Second, I ended up staying in a hotel where I don't get Internet in the room and had to wait until I came down to the lobby to get connected. So, on my anniversary, I'm posting late, I'm posting tough.

I wanted this to be an honest journal of the journey of disability. I wanted to discuss issues, both significant and day to day. I wanted to be truthful in what I wrote about. Since I was 'starring' in the posts, mostly I wanted to be really honest about who I am, how I reacted to the world, how daily prejudice affected me. As a person with a disability that would put me more in the role of 'victim' of prejudice, not so much a perpetrator of stereotype. A comfortable role, no?

Well, I got on to the WheelTrans bus early. The driver was one of those who are not chatty so we just drove. At first I thought we were going directly to my office. Great! I had been out lecturing most of the week and had meetings stacked up. My first meeting was a doozie. I'd get there early and have time to prepare. But then, suddenly, we turned and I knew we were going to pick someone else up. We turned into a narrow driveway and drove to the parking lot of a large apartment building.

After waiting about 10 minutes, we were early in arriving because we were early in leaving, a person with a really significant, a really profound, physical and intellectual disability was rolled up beside me. She sat in a complicated chair and it took a long time for the driver to make it secure. I saw the time ticking away. Now we drove away. I knew where we were going with the other passenger. There is a day programme for people with significant disabilities well to the east of my office. I also knew, just knew, that we were going to drop her off first.

Traffic was bad and I noticed time ticking away. I knew I was going to be late for my first meeting, it was an important meeting, I had an important role in it. And. AND. I hate being late. We come to an intersection and here the driver will turn to go to the day programme which will mean that I will be very late, or turn to take me to my office. We turned towards the day programme.

I know with all my heart that she, the woman sitting next to me gently sleeping, has every right to be dropped off in the order planned. But it was really hard not to think that my time was more valuable and thereby think that I was more valuable. It was really easy to think, 'she won't even noticed if she's a bit late' and 'I will be really noticed if I am a bit late.' I shook these feelings off. I shook the thoughts away. They are wrong, I know they are wrong. But they kept coming back.

It disturbs me when others see me and immediately value themselves and their time more than they value me and mine. A woman had to wait for a moment when I turned my power chair and she was furious at being held up, her time, her self, had been inconvenienced by the way I move. I feel, actually feel, the sense of devalue that others put upon me. I know that the valuing and devaluing of people has led to horrible consequences. I know all that and yet I couldn't stop myself from doing precisely that.

When we arrived at the day programme, I brightly wished her a good day, and realized that I did wish her a good day. I saw her being pushed into the building and greeted by the staff there. The driver then took me to my office, where I was late, where things were in a rush, but where the sky did not fall, people were understanding of my late arrival, the work got done.

In the real world my time did not matter the way I thought it would.

But in my heart my time meant more than her time. My life took more importance than hers. I need to examine these attitudes. I need to ensure that I find that part of me, is it arrogance, is it self importance, is it privilege, that creates hierarchy with me at the top. I need to challenge those assumptions. I need to grow.

So Rolling Around in My Head is four years old ... and my emotional and moral maturity falls significantly behind that. But the best way to deal with these things is honesty. Even when that honesty hurts.

Like it does today.

Touch

I saw them take the body away. The stretcher was eased into the van, respectfully. It would have been nice for him to know that, in death, someone had been gentle with him. I spoke briefly with a bystander, concerned. I wanted to know if it was him, the young man who I gave spare loonies to, the young man who always asked politely for help, the young man who put his hand out for coins but mostly wanted kindness. I sat and watched them close the door. I waited as the ambulance pulled away. There were no sirens. The emergency, it seemed, was over. I panicked for just a moment, his crutch was left behind, the handle dirty from use. It looked, without him, lost. It looked like it was waiting for it's masters voice. Lonely. Something, if not someone, missed him already.

My power chair took over and drove me, senseless, into the mall, over to the elevator where I missed my floor, forgetting to get off. I found myself again and rode purposely to where I needed to be. I found Joe in the grocery store picking up potatoes and smiling over to me. I watched people busily going about their business. A young man, maybe 20, had died just a few feet away. It was unreasonable to think they knew, it was unreasonable to wish they did.

On the way home, the wind which had warmed us earlier, had turned cold. I thought of his young body lying somewhere. I thought of him covered with a sheet when all his life he'd needed a blanket. I wondered if I should feel some kind of guilt. I wondered what I should have felt guilty for ... I always spoke with him, I always gave him what change I had, I always wished him well, I always looked him in the eye.

I suppose there were things I never did. I never took him for a meal. I never engaged in real conversation. I never asked him how he came to sit on pavement and ask for money. I'm not sorry I didn't do those things. Maybe I should be, but I'm not. I don't think that's what he wanted from me. I think he only wanted a moments kindness, I think he could only bear our brief contact, I think he wanted little from me and more would have caused him pain, somehow.

His name, to me was, 'Hey, how you doing?' My name, to him was, 'Good to see you bud!' His hands were always dirty. His eyes were often dim. His presence was sometimes blurred. But he was simply always there. I never knew where he slept. I never saw him with another soul. I never ever heard a mean word from his lips. If the world had been cruel to him, we wasn't ever cruel back. I'd seen people almost spit at him as they turned down his plea for money, he'd simply say, 'Sorry to have been a bother.' He'd say it sincerely, without bitterness, without sarcasm.

I worried that his death would go unnoticed. His absence unremarkable in a city which moves quickly. But he had been gently loaded on to the ambulance. The men who had come for him had come to late, but they had come. And their touch had been gentle. It isn't much for me to hold on to, but it's something.

And it, oddly, gives me a great deal of peace.

My Part, My Pledge

I think I am slightly in love with Stephen Fry. He has courageously signed a commitment to forgo language that demeans and diminishes people with mental illness and people with disabilities. He has courageously asked his fan base to join him. I realized when reading the article that I have never myself signed such a document. It's time. Therefore, today, I make my pledge. I imagine that Stephen Fry will never read my pledge, never know that his actions have inspired mine, but it doesn't matter. I admire those who make their convictions public. My blog is late today as I've struggled to make my pledge as authentically 'me' as possible. (For those who formally wish to sign the 'stamp out stigma pledge' just follow the link and add your name. This is a UK campaign but the campaign doesn't seem to restrict itself from world wide participants. I've signed there, and pledge myself here.)

Hand over heart:

I personally pledge, here in writing, out loud in public and in the private places within my mind an heart to speak respectfully of others. I pledge, cross my heart and hope to die, that I will work to eliminate words of hate, words intended to hurt, words that lash out at difference. I pledge, nothing up my sleeve, that I will intentionally watch what I say and take care with what I do, in order to further a sense of welcome to all, to further a sense of wholeness in my community, to further a sense of safe harbour around me. I pledge, fingers uncrossed, to apologize when I err, to forgo defensiveness when challenged, to courageously speak up when words or actions or attitudes purposely clouds the sky above me. I pledge freely. I pledge with full heart. I pledge with intention. I expect to err, and err and err again, but less, and less, and less. I love language. I love community. Therefore I need to be intentionally loving. I need to be intentionally caring. I need to be intentionally vigilant.

I pledge to be the person that I want to meet on the street.

I pledge to be the action that I need when in distress.

I pledge to be the attitude that I need when daring to be public and different.

Here forth begins a renewed commitment to journey into growth.

Dave's Play List

After my post yesterday and my mention of Wendy Matthews, I received a couple of requests, people curious about the music that I like. I'm always shy of this because I don't have a very 'top 10' approach to music. I tend to like songs with a strong lyric, often not about 'love' or 'romance' but with a message that somehow speaks to me. I decided to go ahead and share some with you. This first Susan Ashton song came to my notice after a fellow with a disability was castrated by a doctor at the request of his mother ... in fear he may become sexual. This song prompted me to sit and think about the 'line I will not cross' ... this theme became a keynote speech that I did many years ago for BCACL.



I met Justin Hines when he came to do a concert at the end of a self advocate concert. His new CD had come out that day but he stayed and signed every autograph for every self advocate that was there. Then, he donated all the money from the sale of the CDS to the self advocate group. He has an amazing voice, writes incredible music and puts on a wonderful concert. This guy's disability may simply be public prejudice ... he deserves to be one of Canada's best known singers. I personally, love this song, I love the timber in his voice as he sings. I'm a fan.



This song's power just washed over me. I don't know what she's saying but man, she's saying it to me. I hear what I need to hear in this song, I never want to know the real words. Her power as a singer, her very presence inspires me.



The Colour of Roses, what a song! Beth Nielsen Chapman is one of our favourites and her music became much changed after her husband died of cancer. She writes lyrics that stun me ... and gravity throws all these rules in our way ... this woman is a poet. I found this version by accident, the recording we have of it does not have the choir and is quite spare ... but this one is lovely too.



Wendy Matthews, song, 'the day you went away' broke my heart. We had lost so many people to AIDS and it seemed all was loss. I like the song way more than the video - the images in my head to this music do not match what she's done here, but then, that's why I listen to music and make videos in my head.



Mary Black became really, really, big in our lives during the time I faced the flesh eating disease all those years ago. This song in particular was one that I listened to over and over again. 'for those who dare to leave the path of others' ... that line spoke, it seemed, directly to me. We went to see her in Toronto and it was one of the finest concerts I have ever attended.




Rufus Wainwright, got to love this guy, when Cigarettes and Chocolate Milk came out I was still a smoker, was just about to be diagnosed with diabetes ... talk about a theme song for my life at the moment. There is something about his humour and his manner that just makes me love the 'tweak' he gives this song.



I actually enjoyed being asked to go public with some of my music choices. When I was young and listening to Dionne Warwick while everyone else listened to the Beatles ... I was shy of my choices in music. But now, who cares, I hope you find one song here or one singer that touches you like they've moved me.

OK, I challenge you to do the same ... give us a link or tell us a song ... go ahead be brave, tell us your 'real' favourites.

Baby ... Baby ... Maybe

What does it mean to parent?

Can part of you exist when you no longer do?

These things rolled around in my head after a brief conversation I had with someone attending a presentation. We were just chatting after I'd signed a copy of my new book. She said, 'It's a pity that you were gay, you should have been a parent, it's sad that you have no children, nothing, to send into the future.' Believe me, I've worked very hard to get that statement absolutely right. It echoed in my mind and 'ping-ed' around in my heart for a while afterwards. She left, my book in hand, shaking her head sadly.

I guess I don't think of children in the way that she does. I don't think of 'my blood' or 'my genes' being sent into the future. It makes, of children, a commodity, things that exist for your purpose, not theirs. I don't see kids as a kind of odd photocopy of parents.

But I do wonder about the idea of leaving a mark. Leaving something behind. I hope I do. I hope that I am carried into the future in the hearts of those who love me. I hope I spend time with my friends, still, when they have tea, smell vanilla or hear that Wendy Matthews song. I hope I exist in moments when my hand is needed to hold, my voice is needed to comfort, my perspective is need in crisis. I hope, then, that I can call from the past into the present and be heard, and felt and known.

The other day I sat in a presentation by someone and listened to them present an idea that I had originated, that I had taught ... I knew this idea was now theirs, I knew that it informed their ideas ... and I knew that the idea had had it's birth in my mind, in my teaching, in my writing.

The other day I read someone who generously and precisely quoted my work and my words. They took what I had done and gave it a spin, made it fresh, made it new. It was exciting to see a glimmer of an idea become something bright in the eyes of another. It was gratifying.

The other day I saw someone reading one of my books during a lunch break. He was sitting by himself quietly eating a sandwich and turning pages. He didn't see me watch him, he didn't see me smile when I saw him nod his head, agreeing with something in the book. He didn't know what that slight nod meant to me.

The other day I heard Ruby say something that I had said, she said it with confidence as if she knew that she could trust the source, that she could trust me in the past with what she said in the present and what she will know in the future.

The other day I saw a child with a disability leave her school, get on her bus, and travel home. A little thing. I knew, really knew, then that there was once a little girl who was the first, who walked into the first hallway and integrated the first school. I know that she took steps that others now follow. She may not have had a child, I don't know, but certainly I know she parented. Didn't she? I think so.

I don't have children.

My blood will not course in the veins of another.

But my ideas may.

And, I guess, that's got to be good enough for me.

IWIST

Home from Ottawa.

One night.

We decided on comfort food. Wieners and beans on toast! It's a meal that we both love and it means home like pretty much no other meal. Joe's job was unloading the car, mine was going to the bank, going to get groceries and then getting home as quickly as possible.

Everything was fine until I got to the grocery store. It was very, very, busy. I picked up the ingredients and then found some great stuff to go in 'care packages' that we send out every now and then to surprise people. So I had more than I planned. I was originally going to simply carry the bag but when going through the check out, I thought I'd ask the nice young man to hook the bag on the back of my chair so I didn't have to bother with it.

There was a young woman behind me who had two of those power drinks set out to purchase. I would have let her by with them but the aisle wouldn't allow me to turn and there were too many people to back up, so I just smiled, I thought sweetly. When my bag was packed I asked the fellow for help, he eagerly agreed and came out from behind the counter. It took him a second, but only a second, to figure how the bag goes on the chair.

I was putting my gloves on and he was already back. The young woman behind me spoke to me through a conversation with him, love how that happens, 'Some people have so many needs, don't they?' My mind went blank with something to say. I felt myself flush. I began to berate myself for asking him to put the bag on the back of my chair.

Then he said, quickly, and as politely as could be, 'Yes, all people have needs don't they. Some need help with their bags, Others need to complain about people. Me, I'd prefer to need help with bags.' The colour magically drained from my cheeks and into hers. I had my gloves on and was ready to go, I tried to catch his eyes but he was now busy smiling at the next customer in line.

All the way home I kept thinking 'IWIST'.

Have you ever said it: I Wish I'd Said That?'

Oh, do tell me when ...

Ruby on Angels

I can't imagine the rollercoaster ride of parenting. Watching children change as they come to understand the physics of the real world and as they take crayon and draw boundaries around imagination pulls on every emotion we have. We went to see the 'Owl' movie and were minding both Ruby and Sadie for a few minutes. Ruby was running around with her arms spread wide. I said, 'Oh, look, Ruby's flying!' She stopped, instantly, in her tracks and said, 'No, I'm running around with my arms out, I can't fly.' Then she added, 'sometimes you are just being silly.' She was right, I was being silly, I was talking to 'Ruby-two-weeks-ago' not the sophisticated 'Ruby-right-now'. It's hard to keep up.

But then she and I were in the car as Joe and Mike were getting things set up in the restaurant, making room for wheelchairs and kids. Ruby and I, as Canadians, of course discussed the weather.

'It's sunny now,' she said.

'It was raining a few minutes ago,' I said.

'Maybe it will snow!' she said excitedly.

'Do you like snow,' I asked.

'I do,' she said.

'What do you like about snow?' I asked.

'Playing in it,' she answered.

'What games?' I asked.

'I like making snow angels,' she said.

'Those are fun,' I said.

'You know about snow angels?' she asked.

'I do,' I said, not realizing that I was about to get a lesson in theology.

'When I was little,' she said, 'I made a little snow angel. Now I make a bigger one,' she said, and continued without prompting, 'do you know what that means?'

'No, what does it mean,' I asked.

'When I was little I made a little snow angel so I only had to be little kid nice, now I make a bigger snow angel so now I have to be bigger kid nice. Every year my snow angel is bigger so my nice has to grow bigger too.'

'Oh,' I said, thinking through her view on adulthood and responsiblity and all.

'Do you make snow angels?' she asked.

Though it's been years, I said, 'Yes, I do.'

'Then you know,' she said without a hint of humour, 'you have to be really really nice because you have a big angel.'

'So every year you have to be nicer?' I asked.

'Yes,' she said, 'and it gets harder every year.'

'It does?' I asked.

'Yes,' she said, 'because grown ups have to worry so much that they can forget to be nice. That' why God wants everyone to make snow angels. It reminds them that one day they will be real angels. So they have to be nice to practice.'

It was time to go in for dinner. I asked Ruby if I could tell Joe and her mom and dad and sister about snow angels. She nodded and listened carefully to make sure I got it right.

When I finished, she nodded approval.

I felt like I had scribed the first epistle of 'Ruby' ... and for the first time in years, can't wait for it to snow.

The Teacher Appears

Just a brief note today.

I've just arrived in Ottawa to work with an organization over the weekend. It had been a quiet drive from Toronto where I'd given an all day lecture as an inservice for a group of agency staff. They were a 'hot' audience and I found myself really rising the the challenge of their attention. Speakers like to feel that they are being heard when they speak, this audience gave me that - wholeheartedly.

Afterwards a young woman came up to me and waited quietly as others spoke to me. When it was her turn she said, 'I'm not to big to admit that I need to change. I heard what you said and I realize I can do better. I thank you for challenging me to think and to change.' She spoke quietly and with determination. We shook hands. I thanked her for her courage to think and rethink her approaches. And she was gone.

But her words rang in my heart. I love people who are willing to be challenged to think and to change. I love people who are willing to let themselves have a moments self evaluation, people who do not fear self evaluation. I learned a lot about that woman in those few minutes ...

she has a heart that works

she has a head that works,

she has the most important ability that a human has - the ability to learn and to grow.

There are moments that matter. To me this was one of those moments. Her voice stayed with me for several hours afterwards.

I want to be like her.

Always.

I want my heart, my head to have constant chats. I want to see the need to change as a promise to the future rather than an apology to the past. I want to be able to say, at the end of every day, I listened, I learned, I allowed myself to grow.

She may have thought that she was thanking me ... but, no ... she was teaching me. By example. With grace.

I learned.

Poor, Poor, UnGrateful Me

This morning we left the apartment early because we were picking up the keynote speaker for a conference hosted jointly by Vita and York Simcoe Behaviour Management Services. I had to be downstairs at 6:40 AM while Joe went to get a rental car. It was hot in the main lobby so I waited in the smaller lobby just inside the outside doors.

I brought my book and sat reading. It was early so I was left in the quiet for most of the time. Then I looked up to see the woman I described in yesterday's post, the one who threw herself against the wall as I pushed myself along. The woman who didn't listen to me. I guess I really upset her by looking annoyed, not grateful at the fact that she had made room where none was necessary.

I know this because she yelled at me.

She stopped at stared at me. With hostility.

"I was just being nice to you, I don't know what you people want." She said with way more anger than I thought the event called for. Beside, I kind of thought I was the one with the right to anger. I was the one not listened to. I was the one who didn't want to feel centered out by her actions.

But I guess I was also the one who didn't bow and scrape in gratitude for her actions. I was the one who didn't make her feel better for an act of charity that clearly cost her a lot to give. I was the one who didn't leave her feeling better about herself by debasing myself with gratefulness.

So, it pissed her off.

I looked at her calmly and said, 'All I said was that there was plenty of room.'

She said, 'I was being nice and you didn't even say thank you.'

I said, 'If that's what you need, I'd thank you to listen to me and to treat me simply with the same respect you want.'

'That's not what I meant,' she said storming off.

'I know,' is what I called after her.

Good morning to you too!