New Years Eve

The car will soon be here and we will be off for a couple of days. For many years we went away to big cities for New Years. New York. San Francisco. Vancouver. Montreal. We partied hard and drank way, way too much. It was fun. Then. Now we are going away to a hotel that is impossibly quiet, perched on the edge of a lake, surrounded by snow. We like going there because it's the perfect place to nap. Our life has changed.

We will ring in the New Year, me sound asleep, Joe watching CityTV's celebration. On New Years Day we will come home, stopping for tea with friends on the way back. It's a sedate New Year's but we like it. I think we like it because we both know that next year will bring with it new challenges and new goals. I have been spending the last couple of days making plans for next year. There are a couple of huge projects that I want to undertake, work that will involve many others, a huge team. There are a couple of personal, individual, goals in there too. So, rest seems to be a good way to bring in the year.

I don't make resolutions any more. They seem to be based on eradicating personal failures rather than attempting to change the world, to change people, to change hearts. I am probably too accepting of my personal failures, I probably should make resolutions, but I'm busy.

It may sound grandiose to say I want to change the world. But I do. I wish everyone did. I know that one person can't change the world but one person can try. I desire to try. I seek as someone very famous once said, to change the world, not to be changed by it. I still have a vision of what could be. I have moments where I feel that we are close to understanding that 'unity' is the most important aspect of community.

So I risk to out with my childish belief that a bunch of 'one person's' who wish to change the world - will. At Vita, I have seen what happens when one 'community' of people works to achieve something great - greatness happens. I believe that's possible on a larger scale. So, heading to the country to rest cause I've got to get up on New Year's morning shouting: Bring It On 2011!

Words: Another Question

At first it struck me as funny. Then it made me think. I was tooting along in the mall and I saw a woman slowly waving a white cane in front of her as she walked. I pulled over to the side to ensure she had lots of room to pass. My wheelchair is completely silent as it moves and, as it takes up significant space, I want to be careful. I could hear the tap, tap, tap, of her cane as she walked, confidently. On her arm was a man, I'm guessing her husband, his cane was folded up and carried casually in his hand.

Not something that would normally strike me as noteworthy. A wonderfully ordinary scene that occurs more and more often as we, disabled people, take our rightful place in the community. I noticed that practically no one noticed. Well beyond being careful to not be in the way, but seconds after passing - the incident was forgotten.

What distracted me was the words that popped into my mind: the blind leading the blind.

I have always heard that phrase in reference to the concept of the incompetent directing the incapable. I'm not sure that it's a term that I've ever used. But it's one that I hear, if not often, regularly.

And here I was seeing the blind leading the blind and what I saw was a man relaxed in the confidence that the woman he was with was guiding him properly. I imagined the math going on in her head. She'd have to have an exact sense of how much space he took up and how much space she needed to leave beside her in order for catastrophe to be avoided. The sweep of her cane was broad but she did it as if she'd done it a thousand times before.

So the blind leading the blind isn't necessarily a bad idea, and further, may actually be a good one.

The thing is it got me thinking about language and the use of disability as a metaphor for inadequacy and incapacity and incompetence.

turning a deaf ear

blind ambition

crippling desire

lame excuses

Those are just some of the ways that disability has made it into language. Oddly, disability as metaphor is more welcome than disability in reality. It seems that one of the best and easiest ways to telegraph an idea is to link it to a disabling condition. We are told that this is just language and it doesn't mean anything about attitudes.

I'm not sure. In fact I've taken a pledge to eliminate the use of disability as an adjective to diminish a noun. I can't believe how often I have to edit my own speech.

I'm wondering, do you notice when people use these kinds of words, how do you react to them?

Knight and Day: Another Question

Odd, that.

Really odd.

When I was younger saying that I was going over to 'the regular' meant going to a particular pub. Now, 'the regular' refers to the pharmacy. I'm signed up for that automated system that has my phone ringing constantly. A charming female voice comes on the line: 'A member of this household has a prescription that is ready for pick up. If you believe you have received this message in error, please press one.' I think, maybe by the frequency of the calls that she might be hot for me. So, I was over at the 'regular'.

My drug store is hooked into the 'airmiles' programme and I always toot around the store to see what purchases will get me bonus points. I had just noticed that if you buy two big chocolate bars flavoured with hot chili flakes, you get 10 bonus points. Beyond being shocked that these didn't sell well at Christmas - I headed to pick them up. I know someone who will love them. As it turned out there were some Christmas wreaths, also on sale, that were blocking my way. I couldn't get quite close enough.

A young man, well dressed and beautifully groomed, saw that I couldn't get into where I wanted to go and simply offered to reach something for me. I smiled graciously, I felt like a dowager queen upon my motorized throne being assisted by an able young knight. (I get a bit of a buzz when my blood sugar is low.) I accepted the chocolate bars and plopped them into my bag. I was on my way.

As I was about to leave the store I noticed said knight with his fair MaMa. Now there was a lady that knew how to dress. Her whole style cost a lot. But her clothes whispered rather than shouted, class. She had a lovely black cane hung over her arm. It looked sturdy. It looked like it was carved for her by artisans in Sweden. Or Denmark. Or somewhere where expensive artisans ply their trade for rich North Americans. She walked with a decided limp, or I guess when you are rich it would be called an 'idiosyncratic gait'.

She pointed to something and asked her boy to get it for her, it was out of her reach. Not because of disability but because of height. His shoulders slumped as if the weight of the world had been placed on them, as if he lived his life in servitude. His lip curled in resentment. He reached for it and handed it to her brusquely.

Wait a minute.

This was the same guy, my knight in shining Armani, who had so graciously offered to get my chocolate bar with flecks of mint. The one that was right beside the chocolate bar with flecks of pepper. Oh, hell, and the ones that had a hint of orange. I bought them all. Shut up. I have lots of friends who eat chocolate. Anyways, this guy offered kindly and even sweetly. Now he's being asked kindly by his MaMa and he's showing annoyance.

Guilt.

At work I chat with a number of people who have difficulty with speech. I know how to wait and feel no pressure to rush the interchange along. When I talk with my mother on the phone who's speech was affected by stroke, I have to work much harder to be patient. This young man with the Gucci, Gucci, Goo smile had not a second thought about offering to help someone as he passed by ... but his own mother's needs caused annoyance. Me, too, I do the same.

Why is that?

Ideas?

A Question

I'd never seen her before. She was sitting on one of the chesterfields in the lobby. Placed in front of her was a shiny new walker. By the tires, I'd say it hasn't yet been used out of doors. Right now I'm reading a book set in medieval Norway, in the book the author often describes one of the characters as being frail, thus I thought of this woman as frail in the medieval sense of the word. I was waiting for Joe to come downstairs to go out. This was before he took sick and locked himself in the apartment for the duration of the holidays - right now he kind of looks 20th century frail. Anyways, she looked busting to say something so I gave her an opening. I pointed to the window and said, 'It looks could outside.'

'I'm not usually here this time of year,' she said proudly.

'Oh,' I said, once again remarking what a wonderful word that is, what secret meanings can be hidden in a single sound.

'Yes, I'm usually somewhere warmer.'

'Oh.'

'But I had a hip replaced a few months ago and now the other one needs doing.'

'Oh.' This may not seem like I'm a sparkling conversationalist but trust me, she was fully engaged.

'Yes, and now that I'm crippled, I've been housebound.'

'Oh.' I flinched because she didn't use the word in the way disabled activists use it, she used is as a means of describing herself in a derogatory fashion. They should give the recently disabled an instruction book or something.

'This is my first time out in months, and it's just to the lobby.'

'Oh.' This fell silently between us so I picked up the conversation, 'I'll bet you are learning to see the world in a whole new way.'

'What do you mean by that? I don't see the world at all.' She looked angry. Like I was some kind of dunce that didn't get what her experience was. But really, I remember being laid up in a hospital room, unable to walk, unable to stand or balance. I remember learning so much about myself and the world and the interrelationship between the two.

'Oh,' I said unable or unwilling or both to become instructive or maybe I just didn't want to risk sharing my experience with someone who I didn't think wanted the sharing.

Whatever, Joe arrived and we left.

I said, 'You know, disability is really wasted on the intellectually lazy.'

'What do you mean by that?' he said.

I'm curious, does that statement make any sense to you, as readers, cause it sure does to me.

Boxing Gloves

It just slipped out of my hand.

The store was teeming with people. My hat and one of my gloves lay on the floor just in front of my wheels. No way I was going to be able to get them. Joe, who has not been feeling well this holiday season, was at home. I, on the other hand, love to go out on Boxing Day to do some hard core shopping. I'd been carrying my hat and gloves in my hand when I'd stopped to look at something, they slipped to the floor.

Though the store was full of people, there were few near where I was. I didn't want to leave my hat. It's a Tesco hat and I can't easily get another one. I like that hat. So I began scanning those who were within earshot. I imagine that everyone who routinely needs the help of others develops a personal set of criteria for determining the 'askability' of strangers. I had just spotted someone to ask when suddenly ...

... my hat and glove were handed to me. A small child, a cute little boy had crawled around the base of my chair and saw my stuff on the floor. A child pre-speech had figured out that help was needed and very willingly had picked up my hat with one hand and my glove in the other. He stood on unsteady feet. Feet new to standing. My hat looked enormous in his hand, my glove was nearly as long as his arm. His smile was huge, he knew he was helping.

I said, 'Thank you so much.' I took my hat and was reaching for my glove when his father spotted him handing me my glove. He came right over and I was just thanking the boy for my glove when he arrived. I hoped against hope that the boy wouldn't be punished for helping a stranger. I hoped well, Dad just took his child up into his arms and gave him a kiss. 'Thanks for helping out buddy,' Dad said.

'Nice kid,' I said.

'He is,' Dad said.

I drove away with my gloves and hat in my bag so I wouldn't drop them again. I'd learned my lesson. I hope the little boy did too.

Ian Cook's 12 Days of Disability Christmas

Browsing around on Christmas morning waiting to open the presents I found the following piece on the web. I couldn't write to ask for permission so I figure I'd give full credit, ensure that you knew that this piece has not been edited or altered by me at all beyond fixing two typos, I'd ensure that the link was there so the site is credited and that the author's name Ian Cook is clearly indicated. I hope that's all OK. I loved this and hope you do too! Happy Boxing Day ... oops!


12 Days of Disability Christmas

by Ian Cook

originally appeared on OUCH a terrific disability website from the BBC.


Yo ho ho! Yes, Christmas is here and what better way to mark the occasion than to let Ouch take you on a journey through the festive season, telling you everything you need to know about disability and midwinter celebration.

So be lighthearted and prepare to discover 12 little known facts about disability - one for each day of the festive season ...

On the first day of Christmas ...

... think of Santa Claus. But remember, as you prepare to tuck into your plum pudding, that this seemingly nice hirsute chap who struggles down your (inaccessible) chimney is none other than the ultimate exploiter of short people. Santa Claus keeps short people - patronisingly called his "little helpers" - in freezing factory conditions at the North Pole. Although some may argue that Santa's little helpers are in fact elves, the Oxford English Dictionary will have no such etymological cop out. According to our foremost authority on the English language, elves are "of dwarfish form" - i.e. they're modelled on people of short stature.

On the second day of Christmas ...

... it's Boxing Day. Nothing to do with disability, you might think. But you'd be wrong. The day's link with disability lies in its association with charity. The traditional celebration of Boxing Day includes giving money and other gifts to charitable institutions and needy people - known as "the deserving poor' in Victorian times, or those folks who went cap in hand. And the largest group of those who went in hand were "the handicapped". That's you, that is.

On the third day of Christmas ...

... think of Christianity. It's what Christmas is supposed to be all about, and what better way to mark the contribution of Christianity to disability than to recall the words of disabled Tiny Tim as told to Bob Cratchit in Charles Dickens' A Christmas Carol. As Cratchit says: "He told me coming home that he hoped people saw him in church because he was a cripple, and it might be pleasant to them to remember upon Christmas Day who made lame beggars walk and blind men see." Oh dear.

On the fourth day of Christmas ...

... think even more about Tiny Tim. After all, he's the character from Christmas literature that disabled people love to hate. Sentimentalised, with a crutch and iron frame supporting his limbs, Tiny Tim has been described as proof of Victorian emotional excess and the model for all the poster children of our time. He is also said to be the "cripple who accepts his suffering and is sweetly grateful for the charity of the non-disabled." Dear me.

On the fifth day of Christmas ...

... think of Charles Dickens. Here was a man who unashamedly used disability as a literary device wherever and whenever he could - and often at Christmas time. As if Tiny Tim wasn't bad enough, there's also Bertha, the little blind daughter of toymaker Caleb Plummer in The Cricket on the Hearth. She is tricked into believing the life of poverty that the two share is in fact one of wealth and ease. Yes, it's a highly implausible tale of deceit that patronises blind people and is modelled almost entirely on the deficit model of disability rather than the social model. No child should be allowed to read this, especially at Christmas time.

On the sixth day of Christmas ...

... think Victoriana. The Victorians didn't just love the festive season, they also had a fascination with disability presented as seasonal entertainment. One of the most celebrated of these entertainers was Tom Thumb, a short person brought over to the UK by circus impresario P.T. Barnum for the purpose of amusing Queen Victoria and Prince Albert (himself the inventor of the Christmas tree). And you thought Tom Thumb was just the name of a cigar that your Dad used to smoke during the festive season.

On the seventh day of Christmas ...

... think mistletoe. You probably think this winter plant is merely a historic fertility rite, something under which you kiss. Well, think again. Mistletoe is in fact part of Nordic negativity about blind people. According to Norse mythology, the blind god Hoder was tricked into firing a mistletoe-tipped arrow, thus killing his sighted brother Balder. So disability activists should boycott mistletoe this Christmas and show solidarity with Hoder. No kissing, OK?

On the eighth day of Christmas ...

... let's hear it for Leppaludi. Staying on the theme of Norse myths, Iceland has its very own Christmas Santa story that incorporates a disabled character. I'm talking, of course, about disabled troll Leppalaudi, who is unable to leave his bed and his wife Gryla. Gryla has a reputation for stealing naughty children to provide food for herself and Leppaludi. The two trolls have 13 sons - the Jolasveinar, or the Christmas boys - who share many of the negative characteristics of their parents. Over the years they have become milder characters, wreaking nothing more than minor havoc on the Christmas preparations. Today they even leave little presents for good children, a reminder that good behaviour is essential around Christmas.

On the ninth day of Christmas ...

... think Christmas entertainment. Yes, it's panto time! Hurrah! Well, no, not really hurrah. Pantos are guilty of at least one form of disablism - heightism. They encourage audiences to see people as essentially comical because of their height. Take Snow White and the Seven Dwarfs. At least three of the group - Grumpy, Dopey and Sneezy - are negative stereotypes. Jack and the Beanstalk, of course, has the opposite form of heightism - giantism - as its plot revolves around a giant guilty of eating human flesh. Fee, fi, fo, fum. I don't think so.

On the tenth day of Christmas ...

... think Saturnalia. The Romans had their own seasonal entertainment based on Saturn, their god of agriculture. However, contrary to popular myth Saturnalia isn't so much an occasion for honouring Saturn, but rather to defy him and his forces of limitation - which includes disability. Defy your disability? Not the kind of positive message one would wish to send out to disabled people these days.

On the eleventh day of Christmas ...

... think carols. Although Christmas carols are part of the festive season, the singing of these seasonal ditties shouldn't be thought of as excluding deaf people. No excuses. There are several all-deaf choirs in the USA - the Covina Apostolic Church in California, the Apostolic Lighthouse in Vandercook Lake, Michigan and the Christ United Methodist Church of the Deaf in Baltimore. Ding dong merrily, and mind those harmonies.

On the twelfth day of Christmas ...

... think of reclaiming the festive season for disabled people. There's so much negative stereotyping going on that it's about time disabled people - and disabled children in particular - found something positive to celebrate. I'm talking Christmas presents! What about a wheelchair-using Barbie doll? Yes, toymaker Mattel rolled one out in 1997. There is also reputed to be a wheelchair accessible doll's house as well as a toy bus with a wheelchair ramp. But hurry! Remember, there are fewer than 250 shopping days left until next Christmas!

Have Yourself a Ruby Little Christmas Time

Joe was off buying a last minute gift. Mike and Marissa had taken Sadie off to be changed. Ruby decided to stay with me. This is new. Not that she made the decision but that we allowed the decision to stand. Up until now I was very uncomfortable about being left alone with Ruby when we were out in a mall, store or cinema.

She is a happy and active child. But she is a child. And children are impulsive and run off. I knew that in my wheelchair, I'd not be a good person to supervise her. If she ran, there were places I couldn't follow. Places with curbs, places with narrow aisles, places where she could disappear and I could not follow. But now, at four, she understands my limitations and she is very happy to stay with me and stay in sight.

We trust each other.

At one point she was leaning up against the wheelchair. 'I'm tired,' she said. I asked if she'd like to sit up with me. She nodded. She lifted her arms up and seconds later she was sitting with me on my lap. We talked about Christmas. She loves Christmas. The presents, the wrapping, the music, all of it. She can sing Rudolf all the way through without error. It was a natural topic for us as we were surrounded by the season.

She saw a picture of Santa in a store and pointed saying, 'There's Santa!' I nodded and asked her if she was going to get lots of presents from Santa. She said that she was. 'So you're not on Santa's naughty list?' She shook her head and said, 'No, I've been a good girl.' I thought about it and, really, she has. Then she surprised me.

'I don't think that it's right.'

'What?' I asked.

'I don't think that you should be good to get presents. I think you should be good because it feels good."

I was quiet, thinking, and she asked, wanting a response, 'Right?'

I said, 'Right.'

Everyone was back and we headed to the hotel to open presents. One of the presents we got Ruby was a pair of really cool cowgirl boots. She actually jumped up and down and immediately went to put them on. It was obvious that they were a size too small. Her face crumpled in disappointment. My heart broke. Then, she gave the boots a quick hug ... she did love those boots ... and took them over to her sister. 'Here Sadie, you can have these.' Sadie, whose feet are too small yet for them took a boot, dropped it, and then hugged her sister.

Christmas reminds me that ability isn't about anything other than loving.

All the rest is immaterial.

Christmas Eve: A Mary Christmas

"I don't know this child," I said to myself. She sat, a tiny thing, in my arms. She is a mere four months old, the child of a woman who works with me, and visiting her mom's workplace over the holidays. I'd positioned her so that she could see her mom the whole time. She glanced at me, looked for her mom, then relaxed for a few minutes. In those minutes I felt such huge responsibility. She had to feel both my strength and know she will not fall, and her personal safety and know she will not be hurt. I did not know this child and yet the fact that she trusted me mattered. A lot. The fact that her mother, who did know me, let me hold her mattered. A lot.

To be given trust is a huge thing. Trust is not easy for me. I know that my default position is to mistrust others and the world. I know that I am hurt too easily by my misreading things with the bias that comes from expectations of victimization. I know all that. And for all that, I come to see 'trust' as this marvelous thing. This incredibly precious gift. And it is. Truly is.

A few days ago a tired little four year old girl crawled up on to my lap and fell asleep. Again, I feel honoured. I feel that I have been given the bestest gift in the world. A gift of total trust. She slept because she knew that she was safe, that she would never come to harm. That she could relax into sleep. I held her and, as she drifted off to sleep, told her a sleepy time story. I know how the sound of a loving voice can form the backdrop to a peaceful sleep. So I told a story in a voice that skipped her ears and went instead to a much deeper place.

To be entrusted is to be ennobled.

And here it is Christmas Eve. I am a believer. This holiday to me is not simply about presents, though I love presents. It isn't about the carols, though I love the music. It's about this 'gift' ... a baby. I am entrusted at this time of year to hold a baby in my heart. This is not a hard thing to do. But I am also expected, by that trust, to keep the baby safe. This baby is sometimes only held but once a year, cooed at and fussed with for a few hours - like a child in an orphanage getting gifts from a charity at a Christmas luncheon. This is a baby that knows neglect.

I want my heart to be as warm as a manger. I want my love to be as strong as a mothers. I want my arms to be known as strong, my hands to be known as gentle, my heart to be known as steadfast. I want the children in my life to know that their trust is not misplaced. I want the parents of those children to know that I guard against harm when their child is in my care.

I want God to know that this baby, this birthday boy, is safe here in my heart. That this child will not know neglect, that this child will be held dear, that 'this child' that will become 'that man' will know love as he grows. That I will come to know him dearly, that he will come to know me forgivingly.

The first Christmas was one full of love. A 'Mary' Christmas.

And that's what I wish for you all today. Love. Strength, Security and Safety. A 'Mary' Christmas indeed.

Give the Guy and Hand

It was a small gesture, one he probably doesn't even remember. Joe and I were nearing the end of our shopping day. My power chair was laden down with bags and packages. If you squinted, I would have looked like Santa on his sleigh. The elevator door opened and Joe quickly scooted on. As there was no one on the elevator and no one waiting for it, I took the time to turn around and back on. I prefer to do this. I don't when others are around because it takes a few seconds more. You wouldn't believe the hostility that those few seconds can bring forth in others.

Joe, inside and out of sight, was holding the 'door open' button. I was backing carefully on when I noticed a young man rushing over to the elevator. I thought he was rushing to get on. Instead, he put his hand inside and over the door, holding it so that it wouldn't close. I glanced at him and he said, smiling, 'These things can close so quickly.'

After I was on he let go and I said, 'Thanks.' He nodded and smiled as he continued on his way.

'That was nice,' I said to Joe who didn't respond because he, too, was reeling in shock.

We'd had a nice day shopping and chattering with each other. But the day was full of petty annoyances. I know that this is true for everyone shopping at this time of the year. But a wheelchair does make a difference. I need the ramps, most others like the ramps. I had difficulty getting on a ramp every time I needed to use one. Floods of people flowed over them. Joe would have to go to the top and stop people, who often became nearly abusive towards him. I'd be at the bottom asking people to wait for a second for the ramp to clear so I could use it.

Lineups were often very narrow making it difficult for me to get around. Patience was thin on the ground and I got the 'get out of the freaking way' look well more than once. I'd come away feeling cumbersome and lumpy. I fought annoyance and chose to concentrate instead on the fun side of the manic shopping day.

At the end of the day we'd decided to pick up something we'd seen first off. Thus we were at an elevator waiting to ride up.

It was then, into our day, a kind hand held open an elevator door.

Small gestures of courtesy and civility can have huge impact. It didn't matter that I didn't need the door held open. It didn't matter at all. What mattered was that, in the midst of confusion and chaos, there was someone in the world who had the time and the inclination to just do something nice.

POW!! Magically the day brightened. Instantaneously the annoyances dropped away.

Most of us forget, as we talk about the changes needed in society, that we can be that change. Mostly I forget, how powerful simple acts of kindness are.

Three Wishes

Adaptions. Considerations. Respect.

These things, to me, are the hallmarks of a good employer. Every single employee needs adaptions ... that's cause they all come with various strengths and inevitable weaknesses. All workers need consideration ... that's cause they all come from the real world with real relationships. All who draw a paycheck need respect ... that's because no job is just about the money. We, each of us, want to feel that we are valued as both an employee and a person. Simply put, it matters that we matter.

For that reason I'm going to give a 'shout out' to Vita Community Living Services today. I have been accused in the past about 'promoting' Vita too much on this blog. Maybe I do, but I think its natural for a writer who writes about his life to, um, write about his life. And as so much 'life' is lived at work, how can that not be grist for the mill. Criticism aside, I'm writing this not to promote Vita but to demonstrate what flexible employment looks like. It's not so hard a thing to understand but it seems to boggle the minds of those who only think from 9 to 5.

A few days ago I was approached at work and it was explained to me that the elevator at the office needs to be replaced. In fact, it has to be ripped out and then a new one brought in and installed. Yikes. As my office is up a flight of stairs, the elevator for me is mandatory. Here's what was done:

1) Vita's head office is closed between Christmas and New Years. Work still happens, of course, but through alternate means. So they've arranged that the bulk of the work be done when I wouldn't be in the office anyways.

2) I was given enough notice so that I could schedule the three days that I was planning to be in differently such that I was either able to work at home or have meetings elsewhere.

3) My home computer and the work computer can talk to each other so that I can log on at home to the computer at work. I can respond as if I'm actually sitting there on the second floor.

So, though I won't be at work, physically, my presence will still be there. It's only three days so the disruption is minimal.

What was noteworthy was the fact that my needs as an employee was considered in the decision making, scheduling was done to minimize the impact on my work life as an employee, my value to the organization was communicated to me by the process followed.

Everyone wins here. I feel valued by the organization so my loyalty increases. The organization benefits because my commitment to it and its values becomes firmer. It's a relationship of mutual benefit that comes from mutual respect. An easy equation. I wonder how many organizations would benefit from just a wee drop off what we all need.

Adaptions. Considerations. Respect.

Long Nights: Disability Blog Carnival

Darkness


Light


We’ve all had long dark nights. We’ve all learned, to greater and lesser degrees how to survive them. This Disability Blog Carnival comes on the Winter Solstice, the longest night of the year in the Northern Hemisphere. One can forget that in another part of the world, it is the day with most light. There is always balance. The submissions to the Carnival speak of strategies rather than solutions, realizations rather than remedies. I think that’s what makes them so compelling. I wrote my post the other day and realized how deep and how difficult it was to write about darkness. I applaud all who submitted and thank them for the many times I was moved, to tears, to thought and, perhaps even, to action.

The Disability Blog Carnival:




At 'Ballastexistenz' an idea of how to deal with the realities of life, the fear that invades us is compellingly presented. Submission as victory is a wonderful new concept to consider. 'Dark Angel' tells of what she learned during a dark time. She discovered what would become a passion. Many travel difficult paths only to finally find direction. Dark Angel is an example of this fact. Over at 'life of the differently abled' a long night leads eventually to healing.

Sometimes just surviving darkness is the goal. 'Oh, And One More Thing' writes of a journey that started in darkness and fear and grief that ends … well I don’t want to spoil the suspense. She writes of the role of faith and the support she found in others. 'The Seated View talks about sidestepping limitations and discovering happiness. Learning that life is enough is a lesson from dark times that carries on through days, sometimes filled with pain. Imagine being a new mom and researching to find pictures of kids with the same disability as your child. Imagine seeing their pictures with a black bar across their eyes. Imagine managing to see a smile on censored faces. 'The River of Jordan' takes us through very long nights and into days lit by a child’s eyes.

The power of love, even love newly discovered, is a powerful thing. 'Butterfly Dreams' also takes readers on a journey and demonstrates the power of reaching out and the magic that can happen. Sometimes love comes unexpectedly when one risks. Loneliness can turn into community. At 'After Gadget' the mere fact of writing the blog post helped with realization. Little things become wildly important in dark nights. Big Gadgets and little gadgets matter … you’ll have to read the post to understand what that means!

'My Shiny Moments' writes about garlands, lights and drag queens! A post about Christmas that’s full of the spirit … lights in dark places can be coloured! 'Abnormal Diversity' finds that in darkness comes dreams and from dreams come ideas. Sleep is a slippery thing but dreams are more solid than one might, at first, think. 'My Little Stinkerie' writes a post called ‘get it in writing’ and there’s nothing I can say that wouldn’t give away too much and spoil the surprise. You’ll just have to read the post to find out how the title fits the post.

Real change is just one of the themes of 'Screw Bronze' with a post that will leave you thinking, feeling and reacting. It takes courage to speak of the unspeakable, 'Screw Bronze' is always up for that challenge. At 'Miss Invisible'we are reminded of the importance of family. Of those who remain steadfast during difficult and dark times. Many of us are inspired by the courage of others, at 'Whatever He Says' one man’s journey, one man’s attitude inspires readers to look at life and at struggles differently. Courage, facing reality and call to change.

It seems that every time I host the carnival I miss at least one. I did again this year Finding My Way was accidently left out. Pop over and visit, read some hints for surviving depression, add more in the comments there.

We end this carnival ride with a post from 'Half Soled Boots' which takes us on a literal journey. Death is encountered and experienced and all the while seasons turn. And that, dear readers, takes us through this dark night and hopefully into dawn.

Thanks again to all who participated, either by writing or by reading. And thanks to Mike for his evocative photos.

Next month the Disability Blog Carnival will be hosted over at 'Butterfly Dreams' and the topic is ... Let Your Freak Flag Fly.

Bear Faith

My mind is full of long nights of the soul. I've been working on the Disability Blog Carnival which will appear tomorrow and thus reading the posts submitted and thinking through the issues they raise. Joe was getting impatient as the time to leave in order to be on time for the movie was fast approaching and I was still at the computer. I pulled myself away from one screen to head out towards another.

As tradition has it, once outside, I scoot off and Joe and I meet in the theatre. It's a longer distance for me as I have to go to the front of the building to hit the accessible entrance. I don't mind the time riding up there, it's one of the few times that I can open up my chair unencumbered. As I near the corner, I see a man, bundled up in a ratty sleeping bag, tucked in a little alcove made on one side of shrub, on the other of brick. He is sleeping. Pressed up against his face is an old and worn teddy bear. The fur is either rubbed off or ratty. The bear stares out at the world through one remaining eye. There is stuffing coming out where one arm used to be. I can see that some kind of tape has been placed over the wound in an ineffectual attempt to stem the bleeding of cotton wool.

Even though he is asleep, I can feel the desperation with which he holds on to that bear. I can feel the comfort it gives him, it's one eye no longer looks blank, it looks, somehow, warily protective. I'm glad he has the bear. I'm glad the bear has him. It seems a perfect relationship.

Continuing on towards the theatre, I think more about him and that bear. I wonder if he knows that the power that the bear has to comfort him is the power that he gives it. I wonder if he knows that he is more able than he could ever imagine. We are never, truly, comforted by others. We allow ourselves to be comforted.

Once.

I am with a woman when her husband dies. We've been waiting for this to come. The news still is shocking. The expected has become unexpected. I find that there is nothing to say. Words are meaningless. Touch is intrusive. I am struck silent. I am immobilized by her grief. I don't know what to do but I know I'm supposed to do something. I dig deep to find something to say. I stumble through. She smiles at me gratefully.

Later, much later, we talk about that moment, I admit to finding myself inadequate. She says that I said just the right thing. I look confused. She said, cryptically, 'It isn't what you said that mattered, it's what I heard'. I know what she means. In loss, I am comforted not by what people say to me but by the fact that they are speaking at all. I am comforted because in their words I hear what I need to hear. 'Time will heal' may come off the tongue but 'I am here and I love you' is what goes in my ear. I have the power to pull comfort out of meaningless phrases. I have the ability to find comfort in sound.

I can.

So can he, the man who sleeps on the street.

He can hold on to a bear and find what he needs there. He can find it because he put it there. He knows where kindness is buried because he marked the spot. It may look like a shabby dependency but it's not. He holds on to what he needs of himself. The bear, it just keeps what he gave it safe, just for awhile.

And then, when he sleeps, the bear gently gives it back.

Why, In My Day

We were in line.

Joe looked behind me and greeted someone, I heard a voice saying, 'It's nice to see you.' I tried to turn around to see who it was but couldn't - the line up of Christmas shoppers was long and closely packed. Turning would have been dangerous to the toes of others. When she noticed that I couldn't see her, she came round to where we were standing.

I recognized her immediately as someone who used to live in the same building where we live. She'd moved out a few months before and she was telling us about her life, now, in a seniors building. She asked where we parked the van in the downtown core. I answered that we hadn't driven down to the Eaton Center that we had 'walked' down. I didn't bother to correct her on the idea that we drive a van, it was an inconsequential point and I've let go of the need to correct things that need not be corrected. Those who bring red pencils to conversations are always tedious.

She didn't understand our answer so she asked again where we had found parking. Again I explained that we'd come down 'on foot'. She touched the arm of my wheelchair and asked if I'd come down 'in this'. I said I had indeed, that it wasn't far.

She blinked.

And blinked again.

It was like this whole new idea was having difficulty entering her mind. The mental picture wasn't coming so she asked, 'So he,' pointing to Joe, 'walks beside you as you ride along in your wheelchair?' Ah, she had it and I confirmed it.

'My,' she said.

'My, oh my,' she continued.

She shook her head as the new idea took hold. 'In my day,' she said, 'people in wheelchairs just never went out.'

'Times have changed,' I said smiling.

She nodded, 'Yes, thankfully.'

We were next to pay so we said our goodbyes. As we continued on with our shopping I thought about her surprise at my freedom. It was good to meet her. It was good to be reminded that my 'freedom' is not something to be taken for granted. That not even a generation ago people 'like me' didn't live lives 'like me' at all. Locked away. Living indoors. Life proscribed.

I live with freedom unknown years ago.

Thankfully.

Dark Nights, Dave's Choices

Happiness is an act of will. This is particularly true when one is ‘different’. We live in a society that loves individuality but hates individuals. Everyone wants to be different but in exactly the same way that everyone else is different. Any one person, any ‘individual’ who actually does stand out from the crowd because of a physical or intellectual difference is noticed. Not as a welcome relief from routine, but as a target. Words land hard against the defenses we build to protect ourselves. Attitudes chip away at carefully constructed self esteem. One strains for self acceptance while battling tendencies towards bitterness. It would be easy to give way and simply be angry all the time.

I was sitting waiting for the car to be brought around, I was surrounded by bagsful of presents. Santa in a wheelchair. A woman approaches and I greet her dog who was wearing, literally, ruby slippers. She asks to me, out of the blue, ‘Why are you in a wheelchair?’ … I was taken aback but in a very good mood and I gave her a very quick and very brief explanation. Then she said, astoundingly, ‘We’ve got to get some weight off you, how are we going to do that?’ I said, ‘I think it’s rude to talk to a stranger about personal things.’ She said, ‘That’s OK, I’m a nurse.’ I said, ‘This conversation is over.’ She continued. Joe came in at this point and she was still trying to continue the conversation even has he was getting the bags. I kept saying, resolutely, 'This conversation is over.' Finally she shut up. I had been sitting there waiting, about to go celebrate a family Christmas. I sat in the car for about 5 minutes after Joe blew off steam about what he’d heard. Then I said, ‘OK, this is a happy day from now on.’ The decision was made. It is up to me how my day will go, not her. I had a terrific day. My happiness is an act of will.

Happiness is an act of defiance. This is particularly true when the world wishes you to be what it perceives you – an object of pity. ‘I’d rather be dead than disabled’ is a clear statement of hate; ‘But for the grace of God, there go I’ is a veiled statement of loathing; ‘I killed her because she suffered from disability’ is an acceptable and understandable statement for a father to make of a murdered daughter. To be ‘out’ and to be ‘happy’ is something that defies all reason, it’s something that ‘they’ have to struggle to explain. Our humour, our laughter isn't real to many, it's a 'mask for pain' (and it may be some times) or it's a defense against the harsh realities of life (isn't it that for everyone?) or it's simply, just, incomprehensible.

Joe and I were in the apartment building waiting for an elevator. We have one of those television screens above the elevator that brings headlines and local weather. It’s supposed to ‘inform’ but instead it reduces the opportunity for social contact. One of the headlines talked about a man being repeatedly shot in the thigh. As we got on to the elevator a fellow tenant, a woman of maybe 22, also got on. I joked with Joe about the headline. ‘They should have mentioned that the gunslinger was a guy in a wheelchair,’ then I held out my ‘gun hand’ finger extended and pretended to shoot repeatedly in the thigh. Joe laughed. So did she. Then she said to Joe, like I wasn’t there, ‘It’s good that he still has a sense of humour.’ Defiance, happiness is an act of defiance.

Happiness is an act of forgiveness. This is particularly true when your past holds dark times and dark memories. This is particularly true when you suffered through the rages and violence of another. This is particularly true when your childhood, or indeed any part of your life, was stolen from you by those more powerful, those in the grip of evil. I struggle every day to live in the ‘now’ even though my emotions, immature children that they are, forever wish to live amongst the ruins of the ‘dark times,' the rubble of childhood 'innocence'. I struggle every day to forgive myself for my past – only those who have been victimized know what that statement means.

I was having coffee with friends. A scent wafted by. A scent in the present that pulled me to the past. That pulled me to a vivid, ugly memory. That pulled me to a moment so quickly that my shock almost cause me to cry out. I see that moment in my mind now, I will not describe it. I will not spend time there. I will reach into my soul and grab hold of my mind’s shirt collar and pull myself back from then to here. I will hold my self gently and say, ‘it’s OK, it wasn’t your fault’ and then, I will sip my tea. Freshly forgiven. And move on. Happiness is an act of forgiveness.

Dark times. Long nights.

An aside: I wake up sweating. Confused. I know something is very wrong. I feel panic in my chest. I sit in the dark. Time slows. My mind fights to figure out the danger. There must be danger. I feel fear. I feel it deeply. Sweat begins to run down my back. I consider waking Joe. I need him. I need someone. But instead I rise and walk, unsteadily from the bedroom. I know I know what to do. I know there is something to do. I don't remember what it is. After visiting the bathroom and returning to sit on the side of the bed, I feel a 'knowing' growing. A realization. I have diabetes. Sometimes I have very low blood sugar. Low sugar makes me confused, fearful, forgetful. I rummage around to find the tester. I'm low. I know what to do.

To return: In the midst of dark nights of the soul, long dark nights filled with despair. I become forgetful. I become confused. I know, just know, that the fears I have are real, and they most often are. Yet there is more. Much more. Then a slow sense of knowing. A realization. I have a power. An amazing power. One I forget in the midst of emotional chaos. Even in the midst of real crisis. I have the power to choose how I will experience my life. I have the power to be the sole pilot of my soul.

No more and never again will I give that power over to another. Anyone. Not even to any 'thing' not to fear, not to self pity not to anger. “My mind is my own. My heart is my own. My body is my own.” This is part of the ‘Pledge of Personal Power’. It is not simply a mantra, it is a prayer to self, it is an acknowledgement of something incredibly important. I am who I decide I am. And with this power I will to happiness. And with this power I defy all prejudices. And with this power I forgive … myself … for the wrongs I’ve done and the wrongs I’ve suffered … and with forgiveness, begin anew.

Happiness will not cure cancer. Happiness will not put money in an empty bank account. Happiness will not ensure that love comes or that love lasts. Happiness is only it's own reward. And it is reward enough. Yes, I will to happiness.

I do so because, simply, I can.

Blog Carnival Deadline Extended

ANNOUNCEMENT

I am extending until tomorrow morning, 9 AM Eastern time, the deadline for submissions for the Blog Carnival. The theme, as you all will know, is 'dark nights and getting through them'. My post on the topic will appear tomorrow. It's been hard to write and I'm not really satisfied with it but it's done.

So send your link to daveandjoe@hotmail.com or just put it in the comment section. We now have a goodly bunch and I'm excited about the process of putting the carnival together.

Today's post follows:

'Why Are You Crying Davey?'

"Why do people stare at you so much?"

Ruby was sitting on my lap, she'd finished her food court treat and we were chatting about Christmas. She caught someone gawking from a distance and I said, 'You mean like that woman over there.' She said, quickly, 'Not just her lots of people stare. Why do they stare at you so much?'

I was stuck.

'I don't like it when people stare and me and I don't like it when people stare at you.'

I was still stuck. I looked at her face. She was looking at me earnestly, with absolute trust. I had thought I'd say, 'They are staring at me because they can't believe how lucky I am to know a lovely little girl like you.' But that's not true. I suddenly felt the weight of the question and I felt like Ruby was depending on me to take her question seriously, to take her seriously.

'Because I'm different than other people.'

'No you're not,' she said quickly, 'you're just Davey.'

I gave her a hug trying to keep tears out of my eyes. 'Yes, I'm just Davey to you, but they don't know my name. They don't know me like you do. They see me as being bigger than them and they see me in my wheelchair.'

I felt like I'd struggled through those words.

'That's what I already said, silly,' she said patting my shoulder with her hand, 'You're just Davey.'

I am that.

I'm just Dave.

How I pray one day that what Ruby knows the entire world and everyone that lives in it one day will understand.

A Moment Today

I had an odd experience today.

We had parked outside the office where I was going to be consulting. I was seated comfortably in a parked car. Even though it was still warm from the drive up, it was cooling quickly in the sub-zero temperature. Joe was outside, checking the area beside the car to see if it was slippery or dangerous for me to stand on. Satisfied that all was well, he opened the trunk.

Across from me is a picture window that looks in on a fitness center. In the morning sun it has become more of a mirror than a window. I see Joe behind getting things out of the trunk. Then I see him pull the wheelchair out and set it on the cold sidewalk. I saw my chair sitting there and it felt, oddly, like much more than a chair. I smiled looking at it. I felt that smile to be the same one I use when greeting old friends, or seeing happy dogs, or looking at pictures of fond moments. It played on my lips, telling me something.

It told me that my wheelchair was now so much a part of my life that I think of it less like an impersonal 'thing' and more like a personal friend. This 'thing' that people are so afraid of ... isn't an object of terror ... this life that I've been given ... isn't so bad after all. I realized, in seeing my chair, my old friend, that I am full habilitated as a disabled person. I'm fully comfortable with my role in life and my roll through life. Really OK.

When I got out of the car, I said to Joe, 'I think I'll hold on to your shoulder and walk over to the building instead of riding.'

Joe took the brakes off the chair and asked, 'Why, it's slippery?'

I said, 'I thought I'd give my chair just a few minutes off duty today.'

After a pause Joe said, 'You know what's weird? I know what you mean.'

Your Two What?

All I want for Christmas is my two cents worth.

I have a voice. OK. Step one to becoming an equal and participating citizen. Now I need a voice that's HEARD. That's one hell of a big step along the process isn't it? Sometimes I just get so frustrated that I want to yell and swear. I don't. But the urge can be overwhelming.

Joe and I went over for lunch to the mall across the way. It was a bitterly cold day and I was bundled up in hat and scarf and thick sweater. My hands were patriotically covered in the red Canada gloves that are the hit of the season here in Toronto. In the mall, at the food court, I took off my scarf and my sweater and my hat and my gloves. 'You'll lose the benefit of that coat' I hear a parental voice echoing down a corridor nearly 60 years in the making. I follow this commandment without question. After all I didn't listen to the 'don't date boys' edict, I gotta give a little ground.

On our way out I rode up a short elevator ride to the small vestibule just inside the door. This is at one of the city's big intersections and the wind whips through there something terrible. I'm in my shirtsleeves and reaching back to grab my winter stuff out of my bag behind me. A fellow coming in sees me and immediately runs over to where we are, reaches in front of me, and pushes the wheelchair door button. The door swings wide open and the wind whips in. My skin begins to freeze.

'It's OK, I've got to put my coat on.'

'I don't mind,' he says holding the door open.

'No, really, I've got to get my coat on,' I'm struggling to get dressed quickly, not well, cause I'm freaking freezing. He's standing there grinning at me, or at the fact that he's being helpful.

'I've got all the time in the world,' he says still smiling.

Is he high on Christmas cookies?

My sweater is on now Joe is digging around in the bag for my gloves, hat and scarf. I yell now, 'Please, shut the damn door, I'm freezing here.'

He frowns and grumbles something, but he closes the door. I know I should explain to him that I didn't need help just then, that his help was intrusive, that it was winter, it was cold and I needed to put my coat on. But I didn't.

He headed away and I felt bad so I said, 'Thanks anyway!'

He turned, all was well with the world and called out, 'Anytime!'

Yeah, all I want for Christmas is my two cents worth. I'd even pay someone a penny to listen to my thoughts.

All afternoon I've been humming, 'Baby it's cold outside ...'

Fingers Not Hitting The Right Keys

I request your patience today. I tried writing todays post, I know what I want to say but I found that I was way short of ability to get it down right. When I finished, I just wasn't satisfied. Thing is, I could post it but then I have to be done with it and move on. I want to take a little more time and try to get it right. So, I'll be back tomorrow with the finished one ... or if I can't get it ... with something new.

Thanks for understanding ...

Slippers

Today is my father's birthday. It's early yet but I'll call him later. We don't talk much, we never did. But we'll stumble through a conversation. He won't say much, I won't press him - that will be my primary gift to him. He's not a talker, my Dad, and my chatter irritated him when I was a child. I remember once him saying to my mother, 'How does his stomach stay warm when his mouth is never shut.' I was stunned by what he'd said. I thought it truly funny but what astonished me was that my Dad could say so many words, all in a row.

As I get ready to make the call. I remember a moment from my childhood. A moment I did not understand for many, many years. It was Christmas. I had bought my father slippers. What a unique gift for a child to give his Pa! Anyways, I watched in anticipation for him to put the slippers on. I worried if they would fit. I was a child constantly consumed by worry - a habit that I have never broken. I was pleased that they did.

He wore them all day. I was pleased that he did. As we were cleaning up to get ready for bed, I took his new slippers to put them proudly under the tree. I felt something inside the toe and when I reached in the slipper I found that there was some paper stuffing inside. I was astonished. I gave way to some cruelty and made fun of my Dad for wearing the slippers with stuffing inside. He simply smiled at me.

It's the smile that bothers me.

I remembered this for no reason a few years ago. And, of course, seeing the situation anew, years later, as an adult, I understood it so much better. It's a pity that many choose to remember their parents as they understood them as children. Adults know the world in ways that children do not. Adults understand the world in ways that children never can. I have tried to visit my childhood, not for replaying childhood memories, but as an adult tourist visiting a familiar landscape.

The adult me wants to spank the child me. I did not understand that this man of few words was a father wanting his son to be happy. I did not understand that he made himself uncomfortable for a whole day, walking with wadded up toes against wadded up paper, just so I would not know that the slippers did not fit. He wanted to protect me from disappointment. And for this he got an ungrateful son with the insight of a toad. Although that may be unfair to toads.

My father is a kind man.

I wish to be my father's son.

I'd like to tell him that today but I won't. I'm going to put tight slippers on my need to express myself and give my father what he wants. A short conversation about not very much. A conversation that will say, 'I get it'.

A gift that I know will fit.

Blog Announcement

It's almost time for Rolling Around in My Head to host it's second official Disability Blog Carnival. I've been getting a few submissions and I thank those who have responded. The theme is 'dark nights of the soul and what gets you through them' ... I'd like stories and posts about how you've surivived those times when it was 'darkest before the dawn'. We all have amazing inner resources, these are stores we need to share.

The blog will be posted on December 21st, the shortest day, the longest night, of the year. I'd dearly like to hear from you so we can have a robust Carnival. This is the season of 'feasting' ... I'd like there to be lots of food for thought to take us through the season. So write something, post it and then submit the link. Or if you've written about 'that time' send me the link.

Email me with submissions by December 15th at daveandjoe@hotmail.com .

Today's post follows.

TAODBAU

scooterhate from thehatstuff on Vimeo.

Transcript:

New rule: If horror zombies really want to scare me, they have to walk faster. I don't even have to run from zombies. I can saunter, amble, stroll, promenade, stop for coffee at Pete's. Zombies, you may be a disgusting, barely ambulatory member of the undead, but so is this guy-[picture of a fat man riding a power chair]-and he can (or can't - impossible to distinguish) catch me.

Open Letter to Mr. Bill Maher,

I'm sure you don't remember me, Mr. Maher, but I have written to you before. I didn't hear back. Surprise. I had written to you regarding your use of the word 'r@tard' in one of your commentaries. At the time I was shocked because I didn't think you were that kind of guy. Turns out, I was wrong. You are 'that guy'. You are who you appear to be. A bigot who loves to take shots at the disabled community.

I'm glad you take delight in the fact that you 'can saunter, amble, stroll, promenade' your way through life. I can't. Nor can many others who have disabilities. I need a mobility devise. I need the world to be slightly adapted to my needs. Yeah, I know, big inconvenience you to you and yours.

As a proud member of TAODBAU The Association Of Disgusting, Barely Ambulatory Undead as you have dubbed me, I'd like to first remind you that you wishing me dead is not the same as me actually being 'undead'. I imagine that you figure that those of us, members of TAODBAU, simply cannot feel. What with being zombie-like and all, it's simply fun to smash us about. Smash us, slash us, stab us, set us on fire - yep, go ahead - it's funny. It may surprise you that I can give you names of people with disabilities that all these things have happened to ... many names actually. Others agree with you, laugh with you ... we can't feel, so crimes against us, crimes of physical violence, crimes of social violence, crimes of verbal violence don't matter much. We can't feel so who the hell cares.

Words hurt, Mr. Maher. Not that you much care. A four year old would know that taking a picture of a fellow human being and then holding it up to ridicule is cruel. I don't believe you will ever read this letter, that if you did you would care about it's content, or that you would ever have the ability to commit to personal change. But I write this anyways.

I write this, to you but not for you. I write this to alert the disability community to who you are, to warn them of your prejudices, to signal others of the presence in our midst of toxic attitudes and corrosive words.

You hurt us, Mr. Maher, purposely and without care.

I may be disgusting. I may be barely ambulatory. But I have the wonderful capacity to be able to give thanks that I sit here, comfortably in my wheelchair rather than where ever you are, in your skin.

Dave Hingsburger

OK

Heaven knows that I, amongst men, should believe in fairy dust.

Amid stress, anxiety and worry, we were calling to set up a Christmas get together with Mike, Marissa and the kids. We're doing something a little different, a little special this year, and it takes some organization. Joe, growing a little tired of my being distracted by roiling inner waters, said, 'Why not call Mike or Marissa and see if you can get all the planning done.'

I did what he said a little annoyed that he was asking me to do something while I was in the mud bath of self loathing, I picked up the phone. I chatted with Mike and we got a date. Step one, tick. Then I outlined the plan and contingency, all agreed. Step two, tick. I heard Ruby in the background and asked if she'd come to talk. She eagerly agreed. She loves chatting on the phone.

She came on the phone full of her day at school. They had had a gift fair in the gymnasium and all gifts were 50 cents. She bought a gift for her mommy and daddy and Sadie. She wouldn't tell me what the gifts were because everyone could hear her and the secret would be out. OK, I got that.

Talking with Mike later he made reference to Ruby's great day at school and her coming home with gifts that had been wrapped by the teachers.

A howl went up in the living room. It was Ruby raising her voice in protest. I could hear her all the way from her apartment in Ottawa to our car in Toronto.

'Dad! The teachers did not wrap the presents!!!!'

Mike turned from the phone and I heard him ask her, 'Who wrapped the presents then.'

A firm little voice said, 'Elves.'

I had wanted to cry all afternoon. And I did, I laughed so hard that the tears that had begun their journey in sadness now made rainbows in my eyes.

I live in a world populated by Elves.

All is OK.

courage

She stops traffic. Literally. People see her and hit the brakes. It’s as if their minds cannot take all of her in and desperately seeks more time. Stares follow her every step. Every. Single. Step. Her feet can only move her a few inches at a time. She moves slowly towards the bus. Joe and I are sitting on a packed bus on our way out for an evening. She finally reaches the ramp and the bus tilts when she steps on it. She is winded at the top and has to stop, catch her breath and then move towards her seat.

There is a stillness on the bus as she settles herself. The driver has difficulty in putting on the seat belt, she is using an extender so the issue isn’t a physical fit but the physical touch that is necessary for securing the belt. She is strapped in. As we drive at every stop, people glance in the bus and when they see her they stop. Actually stop. And stare. Their faces set as hard as their stare.

She is hugely fat. I am a very, very, very big man and I feel small in comparison. Her clothes fit tightly, straining against her body, holding her in, stitches desperately holding on. Everything about her is gray. Her clothes, her hair, her manner. Nothing sticks out. Nothing calls attention to the person who is sitting quietly on the bus. Looking only forward.

Faces.

Faces.

Faces.

Stare at her. Point at her. Laugh at her. Call out to her. Kids, young teens mostly, try to get her attention. They don’t see me. Huge in my chair. They don’t see the man in front of me sitting in a chair designed by NASA. They don’t see the woman on the other side of the bus, quietly petting her guide dog as they travel together. They don’t see Joe, tucked away at the back of the bus. No. The bus is empty of all except her. Her difference makes us all invisible.

One kid screams something hideous. I don’t need to report it here. She looks straight ahead. We all hear the words tossed at the bus. We all feel them batter the side of the bus as they land, hard, against the window.

No one knows what to do.

Least of all, I.

Those words, those hateful, hurtful words. They are reserved for me. I had thought. But no. I am not the target here. She is. Her face is passive. I know that face. I have practiced that face. It is a face that is meant to communicate ‘you can’t reach me in here’ but now I see that it doesn’t say that, it says something much different, ‘I have fled from you, I live in terror of you, I have vacated my eyes in fear of the hatred I see in yours.’

Even when she got onto the bus, already full of the different. Her eyes glanced around, first identifying a seat, then looking in panic at us, knowing we could all see her, knowing that she had to be present for a few moments as she walked the stage in front of us. Would she find rejection here, even amongst those used to rejection?

For the briefest of seconds, when she got to her seat, before turning around to sit, our eyes met. I saw in her eyes something else. Something beyond panic. I saw courage. Raw, unadulterated courage. She was out in the world when it would have been safer to stay in. She may hide within but she will live without. In that moment I admired her. Truly. Deeply.

SMASH

Another hateful word slams the side of the bus. It begins a torrent of words. They rain down on her, she must hear them, she must. But she stays still. Carved of soft stone. I’m biting the inside of my cheek, like I do when I’m under great stress. I can’t think of what to do.

Then.

The man in the chair by NASA turned to her, using the breath that he used to steer the chair, took control, he said, ‘Where are you off to on this cold evening?’

She turned to him, grateful to be spoken to, included, ‘I’m just going home.’

Then, as a sea of vitriol engulfed the bus, as the light turned green, we all began to talk. Of normal things. Of work. Of home. Of weekends. Of dogs. The bus suddenly seemed like sanctuary. They were out there. We were in here. There wasn’t anything we could do in the moment about them, but there was something we could do for her.

In a world that uses hate as a weapon of exclusion, we could use inclusion as our best defense. We had the power to change the world around us, and we did. We had the power to make the space around us welcoming, and we did. We had the power to use gentle voices to silence hateful voices, and we did.

When she got off, she turned to all of us, still with journey’s ahead of us and said, ‘I am so often alone, for a few minutes I felt what it must be like to have a family who loves you when you need to be loved.’

She cried as she walked along towards the door of her apartment. One slow step after another.

But no one teased her in those steps.

Some kids saw her get off the bus. They stared. But they were silent.

I’m not sure why

The Epistle of Paul (O'Grady)

I fell in love with Paul O'Grady during our trips to the UK. I've always thought of him as both funny and wildly intelligent. He's the kind of guy I'd love to have a quick cup of tea with. My respect for him grew when I visited, upon the recommendation of one of my readers (I don't know if she'd want to be publicly identified), a website The Broken of Britain and read some of the posts. There is a lesson here for all of us, government cutbacks always cut the backs of those who have the least amount of power and the least understood voice. Paul O'Grady calls for revolution ... I agree. I don't know how we as an international community can support each other. Anyone have ideas? I'm sure you do. First watch Paul and then leave a comment with suggestions as to how we can become a community whose voice is, if not understood, respected.

Blogging tired

Here's a rare thing: this post is going straight from being written to being posted. Normally I write something during the day and then set it to post automatically. However, I've gotten home just now from a harrowing road trip. We left Boston and headed along I 90 and ran into very heavy snowfall around Syracuse. Electronic signs informed us that the Interstate was closed down due to heavy snow and an accident resulting thereby. So we had to head way north on 81 and cross into Canada and then continue on to Toronto.

We stopped at a duty free to pick up beer and pee. The snow lay heavy on the ground and I got out with that kind of urgency that 50 plus men have when there is a bathroom nearby. But I was immediately stuck. I couldn't go anywhere, my wheels just spun on the snow and ice and I sat there, frustrated watching snow land on my shoulders like piles of cold dandruff.

Joe came round and it was a struggle for him to but together we made it, him pushing, me cheering him on. Sometimes it really does take two.

Winter.

My gosh.

I'm going to have to get winter tires.

Now

"You are in a wheelchair now."

I hadn't seen him for a long while and he was startled to see the set of wheels that I travel with. We caught up with what was going on in his life. I told him what was going on in mine. He really wanted to know that I was OK that the wheelchair wasn't an indicator of ill health but that it was just how I moved now. I assured him.

Then he moved into something a little more serious and I sat and listened, interested. I waited until he was finished and then asked him a question or two more to clarify my understanding. He paused and then continued to fill me in. When done, he waited for me to speak. I took my time to think, some big things were presented to me. I had seen real growth in how he sees himself and the world he lives in. For the first time I heard concepts come out of him that were fully formed and mature, responsibility, personal choices, just consequences. Wow.

Finally I spoke up and he listened careful to what I was thinking. It was a unique kind of consultation because it was so reciprocal. It ended with him thanking me for my time, me thanking him for his.

He shook my hand and said, "You are so different now."

Without saying, I knew the 'now' meant, now that I had a disability.

I said, 'How am I different.'

He paused and said, "You listen more slowly."

I think that's the biggest compliment I've ever gotten. And if it took a wheelchair to slow my ears down, it's well worth it. Really. Well worth it.

A Dark and (not so) Stormy Night

I got on the WheelTrans bus late in the evening. It isn't often I'm out after dark anymore. Typically I am in bed fairly early in the evening. But this was nearly 10 at night. Man it gets dark out. We had attended Vita's Christmas, oops sorry, Holiday, gathering. We'd had a huge meal. You know what they say about Italian food, after a good meal and three days later you are hungry again. Well it was that kind of spread. I chucked it in and decided not to think about carbs and calories for an evening and ate everything including this wild dessert.

So I got on the bus worried about the weight bearing capacity of the ramp. But we were on with no incident. There were two young guys on the bus. One was in a power chair, the other was a non disabled kid. They would have been in their very early 20's. They were coming from a wheelchair hockey game and were full of the game. They talked excitedly about the players. The guy in the wheelchair, a big blustery friendly guy, introduced himself and his friend to us. He said that his friend was his 'manager' cause he's one of the best players on the league. That sent his friend off on an good natured riff about the errors made during the game.

During the ride their cell phones, both of them went off at regular intervals. They were planning a get together at a PizzaPizza joint and, between jibes at each other, were getting things organized. There was such an easiness in their friendship that I sat in absolute wonder at it. It was clear they valued each other. It was clear they enjoyed doing things with each other.

Think about it, this non-disabled guy went with his friend to watch him play wheelchair hockey, ride to and from the event in a wheelchair bus, and had done it often enough to know all the names of the players and to be able to weigh out their strengths and weaknesses.

Then there was the disabled guy who knew that his friend liked pizza more than Chinese food, what movies he liked to go to, what girl he found 'hot' right now. He took as much interest in his friends life as his friend took interest in his.

Terrific.

There was a time in our history, our very recent history, where these two guys would never have met and never have become friends. A time where the two worlds never overlapped and one watched the other from behind the window of a segregated bus.

The ease that these two guys have with each other is great to see. But its more than that. At least it was more than that to me on a dark, Friday, December night. It was 'testimony' to the huge social crime committed against people with disabilities, generation after generation of people with disabilities. Who lived lives alone and separate ...

When they could have been riding with friends to a pizza joint after a game of hockey.

Men's Legs

Psalm 147:10

His pleasure is not in the strength of the horse, nor his delight in the legs of a man

OK, that's what I wanted to say.

I've never been really good at quoting scripture. I've read the Bible, more than once. I know pretty much what's in there and do pretty well at Biblical categories on Jeopardy. But when push comes to shove, I have to dig around to find what I want. Before Phyllis died, I'd just call her and she was able to point me in the right direction. Of course there's Belinda and Susan who are only a phone call away. They each have pretty much immediate recall of scripture. Or I can, as in this case, simply Google it. Try it, just put in the search bar these words: psalms, God, men's legs ... and 147 will come right up at the top.

But when I'm in need of it in conversation or debate, my mind goes first vague and then blank. It can be frustrating because I sound like a spiritual illiterate. And as a person with a disability, trust me you need to know your Bible. People keep wanting to pray for me, figuring I'm disabled because of sinfulness. Others figure that God is just waiting for someone to ring the doorbell and ask for my healing. So, routinely, I get approached.

Actually, that's not quite true.

Here in Canada it happens rarely. In some States, though, it happens a lot. So I was taken aback when asked innocently by someone, here in Toronto, yesterday if they could chat with me for a second. She looked like decent folk, and she probably was, but I was startled when the woman asked if she could lay hands on me. Given my, um, proclivities, this is not an experience I've had often in my life. I looked startled and she explained that she had a 'gift'.

Uh Huh.

Gift.

Yeah, right.

I began to slowly back up in my chair thinking, 'Don't look her in the eye ... Don't look her in the eye.' I stammered an answer saying, essentially but not as clearly, 'No, thanks, I'm fine.'

Remember and sing along, 'I'm OK with being me'.

Or, if you don't remember that one maybe, 'Jesus loves me, this I know ...'.

She started to talk about God's love and I interrupted saying, 'God's not into men's legs.' Now she looked startled and started to back up.

A few seconds later with me babbling on about legs ... she was gone.

I don't think I'm saveable.

Except, perhaps, that maybe I already am.

The F Bomb, over and over and over again

Sometimes I think that the most important social skill you develop is to not tell someone, who really needs telling, to fuck right off.

Seriously.

I watch children tantrum, I watch them throw their whole body into the expression of their anger, I envy their ability to be outrageously outraged. I get it. Really get it.

Seriously.

Cause sometimes things just piss me right off. Sometimes things seem to conspire together to irk me. And irk me to the nth degree. And man, I was some big time irked, just moments ago. But I didn't do it. I didn't let loose. I didn't stamp my feet. I didn't say, when it needed to be said, 'fuck right off'.

Seriously.

I didn't.

And the reason I didn't may seem odd to you, you might even have trouble believing it too. You see, I've discovered that when you are in a wheelchair and really, really mad, and when you let that anger go, even justified anger that everyone understands, it's kind of 'cute'. It certainly isn't serious. It certainly isn't threatening. Sometimes people even get that same 'I'm being patient' look they get when they watch kids lose control. Few people ever think that maybe that kid is throwing a tantrum for purely rational reasons. That maybe the 'big world' isn't fair and maybe the big people in it are misusing their power. No, they just think it's a kid out of control, poor little dear.

Well, it's the same with me, when I sit in my chair and give vent to my wrath, I get that 'oh my poor you' smile. I get that 'settle down dear' voice. I get that 'you'll do harm to yourself' concern. Or even worse, they develop, in front of me, that attitude that you know, just know, that they think that I am upset because I'm in a wheelchair and not because they are a dickhead. All this in response to a well placed and well needed 'fuck right off'.

Seriously.

So today I didn't say, 'Fuck right off.' And I realize that it's probably completely gone from my vocabulary now. I'll probably never say it to someone, other than another driver, again. Even someone who desperately desperately needs to hear it. Cause now I've got to learn how to be mighty in a wheelchair. I need to learn how to let my anger grow me up to eye level, I need to learn to let my temper give a power to my words that I simply don't have as a cripple.

But I'm working on it.

Cause there is someone needing to hear a message from me.

It'll be a version of Fuck Right Off.

But it will be in 'cripple' ... so it will sound different, but trust me, the intent will be the same.

Seriously.

Laying Claim (in celebration of the International Day of Disabled Persons)

I think it was on a day in January when I saw her, standing bundled against the cold. The wind whipped by and her hair, held securely under her touque, peaked out only to be buffeted about. Her hand, without thinking, reached up and tucked her hair back under the protection of the wool cap. She was waiting for the bus. Alone. It came and she boarded quietly along with everyone else. I saw her flash her pass to the driver. He looked up and saw her, his face registered shock. I think he came from a time and place where people with Down Syndrome do not go out, alone, into the world.

I think it was on a day in February when I heard him. His voice was laboured, he was working to speak. At a table next to us the waitress stood, silently, her pencil poised above her pad, waiting for him to finish. He’d obviously been there before. She had obviously learned to simply wait for him to finish. When he did she asked, ‘Will that be all.’ He said, 'Yes'. She was gone. All he had done, seemingly, was to order lunch. What he had really done is create a space of welcome for himself and others. He had integrated the space around him. It’s a huge accomplishment. I was honoured to see it.

I think it was on a day in March when I read her blog. She wrote about her life with pain and in pain. She wrote with poetry and soul. She wrote with great talent. She was able to put into words her experience so that others could live for a time in her world. While no one could ever walk in her shoes, and why should they, she can’t, she made it possible to understand her world. She ramped concepts with words, made those whose minds would be closed to her experience able to move beyond empathy and into a genuine appreciation for who she was and a respect for the talent that forms words into images and images into understanding.

I think it was on a day in April when I met her. Walking along the street near my home using a walker. A stray stone, a remarkable thing to see on a city street, became wedged under the wheel of her walker. She tried moving the walker, this way and that, but the stone stayed stuck. It was determined to block her way. She was determined not to be blocked. She fought it as if her life depended on it. I began to move towards her thinking I could help. But suddenly she turned around, sat down on the walker and started to laugh. When I got to her she said, ‘I just realized how long it’s been since I was stoned immobile.’

I think it was on a day in May when I noticed the touch. A simple, simple touch. I was riding on the bus to work and I looked down and saw a mother sitting on a bench beside her daughter. The wheelchair had been decorated up so that it befit a princess. The little girl within was sleeping. One of those kinds of sleeps that adults the world over, weary with worry, worn with work, look at with envy. The sleep of a child in a world that is safe. Her mother gently reached over and touched her daughter’s hair. A gentle touch. A touch to reassure her that this treasure was hers. A touch that didn’t believe the reality of the love she felt and the love she received. A mother’s touch.

I think it was on a day in June when I experienced the joy of pushing through the two doors all on my own. My manual chair is a wee bit too wide for one door and both need to be opened. I always had to wait for someone, anyone, to come. No. I had to wait for someone, anyone who was approachable enough to ask, to help me. But that day I thought I could do it. But that day I realized I was beginning to relax into dependency. So that day, I pushed through the door, on my own. I had the strength. I just hadn’t had the will that comes from belief in self.

I think it was on a day in July when I marched with others with disabilities, intellectual disabilities, physical disabilities. I marched with gay people and straight people. I marched with family and with strangers. I marched with pride and with purpose. The feeling of belonging overwhelmed me. The feeling of togetherness was astounding. We marched, in diversity, in celebration of difference. We marched in 3 D: Diversity, Difference and Disability. A proud day for pride day.

I think it was on a day in August when I answered the phone and spoke with a father, desperately concerned about his son. Desperately needing some advice about what to do and where to go. We talked and facts tumbled out of him, jumbled, without order, his meaning was clear. ‘I love this kid, help me help him.’ He became calmer as we spoke, he listened with urgency, he waited with anticipation, he spoke out of pure, unbridled pride. This was a Dad involved. This was a Dad in love. It meant so much to me to know that a son, born with imperfections, fit perfectly into his fathers heart.

I think it was on a day in September when I talked with a fellow rider on the WheelTrans bus. He’s many years my senior and has lived with disability since birth. We chatted easily. When he learned that I was new to the disability experience, he looked at me carefully, sizing me up. He then talked to me as a grandfather talks to a grandchild. Without patronization but with great care and concern. He wanted me to be careful of the many psychological traps set for people with disabilities. ‘Never be grateful for what should be a given,’ he said, something that has stayed with me ever since. Something that changed how I thought. Yes, I think it was a day in September.

I think it was on a day in October when I felt a breeze and looked up from my book and my tea to notice her speeding by in her power chair. It was an unusually warm day for early fall. The sun shone powerfully, as if it had decided to protest the coming of winter. The sky was winter blue, the sun summer yellow, the leaves however were coloured with fall. She seemed encouraged by the rebelliousness of the sun and wore a tight halter top, a short skirt, shimmery nylons and high, high, high heels. She was a woman in celebration of her femininity. She was a woman set to remind the world that in that chair was a flesh and blood, to the bone, woman.

I think it was on a day in November when I listened to a man with a disability on the radio. He was talking politics and the growing power of the ‘disability vote’. He was smart. He was erudite. He was quick. His wit cut through the silliness of the questions being asked. He managed to find meaningful ways to respond to the ignorance that lay behind the interviewers understanding of the issues. I knew he was a wheelchair user, cause he mentioned it a time or two. That makes it OK for me to have thought of him as a powerful roll model.

I think it is today, a day in December that we celebrate the International Day of Disabled Persons. I admit to knowing nothing of the origin of the day. I admit that I’ve not even looked it up on the computer. I will, of course, because I’m curious by nature. I decided to write this before I discovered what others thought about the day or why others created the day. I just wanted to be sure to say: society may give us a day, but we, the disabled, have snuck through the door and past pity and preconceptions, the twin prejudices that guard access … and have taken the year. All of it. Every day. We claim our lives as lives to be lived, fully and freely. We claim our right to independence and our natural state of interdependence. We want nothing more that what others expect. Daily.

Every. Single. Day.

ITAS(CP)D

The elevator was down. A woman leaned against the wall, bitching. An old woman looked mortified. A fellow, also in a power chair came in and we told him, in unison, that the elevator was broken down. Joe had gone down the stairs to check to see if it was simply stuck. He came up saying that it wasn't just stuck, it was broken. The fellow who'd come in said to Joe, as if Joe worked for him, 'You need to go upstairs and tell them at the desk that the elevator is broken down.'

I was taken aback at the fact that he felt that Joe was there to be ordered about. Joe just nodded and headed up the stairs, when he got to the top, the fellow boomed out 'And that they need to open the door to the alternate entrance', Joe turned and nodded. I then called out 'Please.'

The fellow looked at me perturbed by my intrusion. He had come in later and didn't realize that Joe was with me but that wasn't the issue. Even if he had known, people don't need to be ordered about, manners are manners and everyone needs to be treated respectfully. He started to say something in protest and I just raised my finger, no not that one, to indicate that if he continued this was going to become an issue. I'm good at the finger raising thing, I learned from the best growing up.

He sputtered and then muttered, 'OK, please ... hope that makes you happy.'

I didn't say anything but it did.

Years ago a mother said to me about the folks who worked at caring for her daughter, 'They don't get much in pay so they should get lots in thanks.'

Which reminds me ... today is International Thank A Staff (Care Provider) Day!

So do that would you please.

A Day To Remember

I have no where to put flowers.

No where to commemorate the loss.

Name after name is written on the walls of my heart. Face after face appears in my mind. Voice after voice whispers in my ear. My memory fills with places and spaces now empty, people gone. Loss doesn't result in emptiness. Not at all.

Not at all.

Today is World AIDS Day. To me, this is always a deep and personal 'remembrance day'. Remembrance of lives lost, too young, lives left, too early. There are those who have died that live still in my heart and my mind. There are those who I still visit in quiet moments of memory. In my memory, they've grown older with me. I don't remember them as they were. I, and I suppose this is weird, remember them as if I'd seen them yesterday. They are growing old with me.

The other day we drove by Woody's, a bar in the heart of Toronto's gay community. A bar where we all used to get together for drinks in the evening or on weekends. A bar where we saw the group get smaller, and smaller and smaller. It seemed, then, that we talked of death a lot. We were in a bar with music pumping, pictures of hot guys on the wall, talking about funerals and about health. If, like with the magic of television, the background changed to a senior's home, the conversation wouldn't have changed. Except, perhaps, we'd all be ogling the cute male nurse.

As we drove by Joe said, simply, 'Do you remember?'

I replied simply, 'I do.'

We rode home in silence. Together, alone, remembering.

As Joe got the wheelchair out of the back of the car, I answered again, quietly, 'I do.'

And today, World AIDS Day, that answer is vividly true. I'll be at work, sure. I have meetings that call for my full attention, true. But part of me, the part of me that lay buried in hearts that no longer beat - will be mourning. Their names will be said, quietly, in my mind. Like I'm whispering them awake, another day older, another day lived here in my heart ... I know that's not heaven, but it's all I have to offer.

And now I realize.

And realization dries my eyes.

I don't need to lay flowers anywhere.

Because friends live as long as friends live.