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.