An Irish Melody

Regular readers will remember that I was very concerned about sharing the words to the song I had written when very young to sing to myself in comfort and defiance when being teased or bullied:

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 lovely day.

Well, after sharing these words here, and with Ruby who has been teased at school, I've now incorporated the song into my teaching about teasing and bullying. At one point in the workshop, Joe and I sing it, the group sings it and then we do 'Karaoke against bullying' and individuals come up to sing. Almost always more than half of them do. In Dublin one fellow came up and rapped it adding all sorts of 'yo' and 'yo yos' to it. Another sung it as an Irish folk song. Another countrified it, and we all laughed and encouraged each other.

She smiled all the way through.

For much of the morning she had sat and stared, even appeared to be sleeping. But she wasn't. She was taking in the situation. Determining if it was a safe place, if Joe and I were safe people. It was as if she wore her Down Syndrome as a convenient costume to hide within. People don't notice her. That is her intent. Then, suddenly, she got up and headed to the flip chart where the words were written down. Her hands shook with nerves. It was if they were the only part of her that was willing to show the fear that she must have felt, making herself vulnerable by coming out, by being present, by being up front and in view. Then she raised her voice and sang, sweetly, reading word for word. It was a voice that sounded rarely used. When done applause rained down on her. She smiled and took a bow and walked carefully back to her seat.

From then she participated often, laughing quickly and encouraging others. When we all talked about feelings, I asked her what made her happy. She had heard all the other responses, she thought, carefully, as if it was the most important question she had ever been asked, 'expressing my feelings and having people listen' she said. Throughout the rest of the session, I'd glance over at her. She was no longer slumped down, vacant eyed. The costume was off and she was fully there and fully present. By the end she participated, and her hands didn't shake.

I was waiting in the lobby for transport when she was being led out of the building. Her costume was back on. But as she passed me, she glanced and me and I heard a quiet voice singing, 'I'm OK with being me...'

It is my fervent prayer that she finds more and more places and more and more people around whom she feels safe. Safe to come out and be and live. That she needs to retreat into her soul only for solace and quiet - rather than as a place to hide in fear. I hope that the words she sang will become a message from her to those who care for her ... I'm OK with being me ... now it's their turn 'I'm OK with you being you'.

How To Stay In A Hotel

We knew we were in for an extraordinary experience when we got the phone call. A room had been booked for us in Killarney a the Malton Hotel. As the room had been booked by a third party, someone at the hotel called us several weeks before our travels to enquire the specifics of our needs in an accessible room. There were several types of rooms, what would we like the room to have in it or not have in it? At no point were we asked direct questions about my disability or what I could do or not do, there were just questions about room specifics. We hang up from that call astonished after having being assured that they had 'just the right room in mind'.

Upon arrival a clerk asked if she could accompany us to the room so we could inspect it to see if it suited our needs. There was another lay out that we might like if this one did not suit. It suited. What was amazing about the place was that it was originally built to service the train station across the street, OK well that's not amazing, but it was built over ten years before Canada became a country. It was a big old grand hotel. That was completely accessible. There was no where that I needed to go that I couldn't get to. There were long hallways, sure, many of them carpeted, sure, but some carpets are really pushable, some are not, these were. The accessibility in a hotel this big and this old had had to be renovated in. The renovation was so seamless that it was like the hotel was built thoughtfully, all those years ago, for those of us with disabilities who wished to travel. A nice, but improbable, thought.

While there I had a problem with one of the foot rests on my wheelchair. We no longer have an Allen key because an airport security official declared it an international risk for flying (seems disabled people are adept at disassembling planes during flight) and we really needed to get it raised or risk damage to the chair itself. We spoke to reception. Hardly 15 minutes later a cheerful guy comes along and says, 'So let me take a look at that chair.' It was fixed only 5 minutes later and he was on his way.

All this is great. However what was remarkable is that we weren't getting 'special' service because I was in a wheelchair or because I had 'special' needs. We noted, quite simply that the hotel treated each guest and the 'special' needs that they had as important. I wasn't singled out for good treatment, I just got the excellent treatment that they gave everyone. Remarkable. Incredible even.

The sessions flew by, it felt like things were accomplished and that parents and care providers and people with disabilities all were up for learning and for interacting with this big, happy, wheelchair guy. It's easy to work well, to enjoy work, even exceed personal expectations, when one is in an environment of respect and care.

And that's what I tried to tell them in Kerry.

Here's to the Malton Hotel, Dave's official hotel of the year 2010.

Watch in December for my awards to two hotel staff, one from the UK and one from the US ... who were in their way exceptional too. Unfortunately, this year, unless something remarkable happens in the next three days, there will not be an airline category.

This Post Stinks!

It is said that Luther, or some other zippy and fun historical theologian, these really were party guys, said that us humans amounted to little more than a 'snow covered dung heap'. A lovely image that, but it came to mind this morning as I considered my behaviour last night. We'd arrived at our hotel after driving through a horrific storm from Killarney in the heart of County Kerry to a hotel near the airport in Dublin. It had felt that all the Gods of Ireland had conspired to lash us with wind and rain throughout most of the journey. We were tired. We'd left warm company in Kerry and rolled through cold weather into our hotel.

Given our key we headed to the room.

It wasn't accessible.

I threw a fit.

A patient clerk explained that the room had recently been converted from accessible to non-accessible and hadn't been changed in the system yet. We were given a key to the new room. Once in, there was a small problem in the washroom and we needed maintenance to come to the room. Instead the manager arrived to double check the problem and determine a quick course of action. When she asked if everything else was OK, I spoke up and grumbled about getting the wrong room, complained about rolling up and back - down carpeted hallways at that. She said she understood and then said, 'I'll speak to the clerk about the problem.'

Suddenly, though I was still feeling grumpy and tired, I realized something. The 'pile of dung' that was my soul was steaming and I'm afraid the shit was showing through. Not a pleasant thought but it brought me up short.

As the manager was leaving, I said, 'Wait!'

Then I said, 'I'm making way more out of this than I should be, I'm tired, I'm grumpy and I want to be angry at someone. So, I'm being angry at the clerk and the hotel, it's not fair, I know that, but I can't stop myself. There is nothing to talk to the clerk about, the problem was solved quickly and efficiently, I just want to be mad.'

I'm proud of myself.

You see, the whole time I was saying it I was still really, really mad. Silly mad. Two year old temper tantrum mad. But I still managed to cool down a little bit.

Enough for a bit of snow to fall on the steaming dung and cover up the part of my personality I'd rather look frosty white rather than steaming brown.

Bagged and Tagged

It's such a pity. See, he had such a pleasant face. It was a face that he took care of, groomed it well, framed it in hair a lightly slighter shade than born with, cut in and exciting and fashionable wave. He had teeth that looked preternaturally white, teeth ready for display, teeth that should brighten a smile, not make terrifying a snarl. He did not want to serve me, so, he didn't, he served Joe next to me. He did not want to speak to me, so, he didn't, he spoke to Joe. He did not want to hear me, so, he didn't, he answered my questions as if Joe had asked them. There are times when I'm amazed by my skills, apparently ventriloquism is now amongst my arsenal of talents.

Leaving the gate with our boarding passes we head to security. The woman at check in, after asking if we needed assistance, informed us that our gate was 'really just inside security'. This must be code for, 'Its the furthest gate from here.' She didn't think I'd notice I guess, just being a disabled guy pushing himself over long stretches of carpet. But, I push myself all the way, I've not been lifting weights for nothing!

To get on the plane, a small twin prop ... I feel its important here to say that the airline had been informed of two facts important to this story and to my experience. 1) I use a wheelchair and 2) I can't climb stairs. So, they knew. OK back to my adventure. To get on the plane we ride down and elevator and then get on a 'medi-life' or an 'ambi-lift' I don't know which they call it ... why they can't simply call it and 'access-lift' I don't know, I'm neither sick or in need of an ambulance, I simply need access. We go to the plane. We are sitting in a little mobile waiting room. When in place, it slowly lifts us up into position. Now we can see the door of the airplane through which we will enter.

WAIT!!!!

It's not a door, its the small baggage hatch, through which we had just seen two baggage guys struggle to get a tall piece of luggage through.

'I'm going in there?' I ask. A nod tells me I am. I am not sure I can. I'm not sure I have the flexibility to bend down to get it and the balance or strength in my legs to do so without falling or suffering a serious accident. I need to take some control here. I ask the man driving the lift if he can lower us a bit so I have a small step up but which would make it such that I have to bend less. He can. He does. I wheel out on to the ledge and get out of my chair. My heart is in m throat and my pride and dignity, which had been crumpled up by the guy at check in, now was simply tossed away. I get my head and shoulders into the plane. I see potential hand grips inside the plane. I grab hold and use my upper body strength to pull my lower body up and into the plane. Finally, I'm in my seat.

After take off I ask a flight attendant what will happen on arrival. I'm told another lift will be there for me. I can't imagine how I'll get out without the grips on the other side. Well, not to worry, there is no lift for me. Some airport guys come on the plane and talk to me. They don't want to take me out the baggage hatch. One shakes his head in astonishment that I'd been required to enter the plane that way. His eyes say, 'I'm sorry, man, that's awful.' I almost cry.

I got up and stated that I'll go down the stairs even though it terrifies me. I want to be off the damn plane, I want this experience over. I want, mostly, to be away from this airline. The stairs are steep. I will need to back down. There is a hand rail on the right but not left. I can't brace myself, balance, then step backwards and down. An arm appears and I grab it and step down. Now there is a rail on my left. Minutes later I'm in my chair, then the transport, then the airport being pushed along to meet up with luggage.

It must have been odd for people to see the unusual sight of luggage collecting luggage.

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Getting It Wrong, A Habit of Mine

He stared at me every time he walked by. Openly stared. He was just a little boy, always holding on to a hand almost out of reach, rushing by on little legs quickly following the slower strides of longer legs. He'd turn right round and stare at me. I'll admit, and I kinda don't want to, I was cutting him way more slack because he had Down Syndrome. That's wrong, I know it, we don't have to talk about it. I don't like anyone staring at me, anyone of any type, any stripe.

I was reaching the end of my tolerance with his stares, I kept wondering what brought him and the hand he was holding back and forth by so often. 'Just stop it,' I thought. I fell into a powerfully intense conversation with a young father of a child with Down Syndrome and we spoke softly and privately. I did not notice that that little boy was now standing beside tall legs, looking round them at me. I kept trying to simply avoid his eyes.

But then I thought I saw him make a movement so I looked. He did it again. I was thunderstruck. He made a small pluck at his shirt. A bright yellow shirt. I was wearing my bright yellow shirt because I told my bright yellow shirt story during the keynote speech. I smiled at him. He grinned at me.

I wonder how often I get it wrong. I wonder how often old wounds and old patterns determine how I see and react to the world. I wonder how often I leave somewhere carrying hurt that my supposition inflicted, hurt that was never dealt out - keenly felt anyways.

My yellow shirt.

He found something about me to which he identified. He a boy. Me a man. He a kid with Down Syndrome. Me a guy in a wheelchair. Across the great divide of difference, he found something that made us the same.

A yellow shirt.

I was getting on an elevator and someone called that the little boy wanted to wave goodbye. I turned and waved. He smiled.

His eyes ...

His eyes ...

His eyes reflecting my bright yellow shirt.

not much of a blog today

I'm a little tired when I get in the car. I love the travel and the lecturing and the opportunity to meet people and share ideas, I do. But after several days of talking, telling stories and answering questions, I begin to feel tired. Sitting in the car we prepare for the drive. We expect traffic, we've been told to expect fairly slow going. We expect problems of some kind with the hotel, they come with the territory. We expect the evening drive to be ... more work.

But.

The traffic flows smoothly. The round abouts move traffic smoothly and quickly. Drivers seem to be in a giving mood and people merge rather than compete for space. We get where we are going quickly.

There's lots of disabled parking at the hotel. We pull into a space and roll into the hotel. The man on the desk looks up and says, 'Mr. Hingsburger, welcome back!' We haven't been here for a couple of years so this surprises me. He tells me that we're in the room we were in last time, the one we liked so much. Seconds later we have our key.

The porter is immediately available and our luggage is suddenly plopped in our room and within a few minutes we are settled. I try the wireless and, as we are on the first floor we can link on to easily. I quickly check my blog.

Taking a breath I check my email. There are only four from work, two about upcoming lectures. I've got it all done quickly. I'm able to sign off and crawl on the bed to lie down and watch television. There's a good mystery on.

I was really tired.

I needed life to be kind.

Things that I wouldn't notice otherwise became important. Things that I remember, simply because I needed them, to be grateful for. And I was. And am.

Now, it's time for a long nap, g'night.

An Octopus' Party In The Shade

Another really low bed. Another call to the front desk. This time two helpful women arrived with elephant feet. You can't make a line like that up. For those that don't know, elephant feet are these grey plastic things that look like overturned flower pots, they are made such that they can raise furniture. You simply set the existing legs onto the top of the elephant foot and presto chango you have a tall bed.

The bed being lifted was a king bed, problem was the king bed was made by locking two smaller beds together, zipping two mattresses together and then making it up as one bed. They had four feet, there were eight legs. They mentioned that a woman and her husband had got by by putting the feet on one of the beds so that the bed became kind of a split level affair that seemed to work for them. We agreed it would work for us.

All were put on easily except for the one on the inside at the head of the bed. That took much work. Eventually they pulled the bed back, put it on, then pushed it forward again. The two women were young and full of fun they laughed a lot while getting it together and ready for us. All seemed well for a good nights sleep.

Only a half hour into sleep, someone moved and the elephant foot that had given trouble, gave way. Most probably when the bed was pushed back it tipped and now it fell. This meant that I was in an impossible angle for sleep. I could hear Joe sleeping peaceably but I was trying to sleep clinging to the edge of a bed like I was on a cliff face. I did sleep but my grip gave way and I slid down so that my feet were at one elevation, my hips at another, my shoulders at a third and I woke with blood pooling in my head. Everything hurt.

It was after one in the morning. I had to get up to go to the bathroom. That meant using rock climbing techniques to get up to the edge of the bed and then up onto my feet. I managed. I got back into bed and held on to the edge trying not to slide. By now my back was screaming in pain. I woke Joe up. We got up and managed to get all the feet off again and got back into bed. Just before doing so I went to the bathroom and wrung my bladder out like an angry washer woman.

Once in the low bed I noticed that if I dangled my fingers over the edge I could feel the plush of the carpet. Who sleeps like this, druids? I managed to get up a few hours later for another pee. It was a bit of work and I decided to stay up rather than go through that again.

When we left we were asked about our night. We said it was great. Because it was great that two young girls with four elephant feet had visited our room. And no drugs were involved.

Grandpa's Dinner

"Where did you get your wheelchair?" a little boy is asking. We are sitting having dinner in a Toby's Carvery having arrived early enough to have a meal out. His mother is trying to guide him away. I indicate that I'm totally OK with the question.

"I bought my wheelchair," I said.

"Where did you buy it?" he asked really curious.

"I bought it back home in Toronto," I said.

"No," he said, frustrated, "What kind of store did you buy it in?"

"Oh," I said understanding, "I bought it in a store that sells wheelchairs."

"Like an ASDAS?"

"No, it's a store that has all sorts of stuff for people with disabilities. They have things that reach high for people who can't reach high and they've got bars for people to help lift themselves up and they've got things like wheelchairs.'

'Hmmm,' he said, 'are there stores like that here?'

'Yes, I'm sure, they have them pretty much everywhere.'

'Oh, that's good.'

'Why do you want to know?'

'My Grandpa can't walk any more and he won't come out with us. I want to get him a wheelchair for Christmas. How much are they?'

'I don't know the prices but this one cost about 300 pounds.'

'That's a lot.'

'It is.'

'I don't have that much saved,' he said with a sigh.

Finally he was done. His mother, who was chatting with someone the whole time, took his hand.

'Mom,' he said, 'You know what I want for Christmas?'

I'm willing to bet she would have guessed wrong.

Sometimes kids give me such a sense of peace ...

the future needs boys who want wheelchairs for Christmas so Grandpa can go out for dinner.

Never Ever Land

At check in the clerk was confused. We had booked a wheelchair accessible room, we had the paperwork. The clerk didn't have it in her system. She said, 'We do have one but it is booked by one of our regular customers who doesn't have a disability but likes the bigger toilet.' She pushed a few buttons and then said, 'I've moved you over into that room, I've placed her elsewhere in the hotel.' We said thanks, she shook the thanks away like service people do - even when they richly deserve it. I like people who can think independently and who can problem solve and who can even break a rule or two. Once in the room we forgot about the gesture and set about just relaxing, watching TV, writing blogs, the such.

An hour or so later there was a huge commotion in the hallway. A woman was really, really upset, I heard the desk clerk trying to settle her down with a calm voice. She explained, 'I understand this is your usual room but the gentleman in the room uses a wheelchair and needed an accessible room.' This explanation did not work. The 'regular' guest was quite 'irregular' with her language. She simply exploded. She did't care if I was a wheelchair user or not, this was her room, she liked the larger bathroom and she didn't think it was 'fair' that disabled people got the best bathrooms, and the best parking spaces, and the best treatment at hotels like this one.

Then there was the following ....

I am a regular customer here and I ...

I'm never staying here again unless you ...

I'm going to talk to the manager and you will pay for this ...

I've never been so rudely treated ...

I've taking out all the swearing as it doesn't really add to the story and were simply so frequent that I'd get tired of typing all the 'f's.

We didn't know what to do. The clerk was trying to get her to calm down, she gave her the option of taking the room offered or letting her find another room in another hotel. Seeing that there was no way round the decision and that a damned disabled person was staying in the damned disabled room, she was guided out of the hallway.

I called down to reception an hour or so later and asked if all was OK. The clerk laughed. Laughed. She said that the customer had chosen to go to another hotel and never, ever, ever, will come back. 'Mr. Hingsburger,' she said, suddenly serious, 'I'd really like to thank you for choosing our hotel this evening.'

Then we both howled.

Two Princes and a Pea

I was desperate for a tea. After checking in, Joe, knowing I was thirsty, sent me to the bar to relax with a cup of tea while he took the stuff up to the room. He'd join me in a few minutes. I was sipping on a cuppa hot Tetley green tea when he came into the bar. He told me immediately that there was something wonderfully accessible about th room. Something he'd never seen before. I looked up interested, he continued, 'The floor isn't carpeted, you'll be able to roll around easily in there. That was cool.

'But ... he continued, there may be a problem with the bed. It's very low to the ground. I think it will be OK for you, but it is low.'

The seed of worry came into my mind. We've had this happen before here in England, rooms, paradoxically, with tall toilets and low beds. I know that disability means lots of different things but for me it means I have trouble getting up from low seats unless there are grab bars and even then sometimes it's tough. I finished my tea somewhat reassured by Joe that the bed was probably just at or a little above what I needed.

Once in the room I looked at the bed. It was low. It was also soft. It wouldn't work. Now was time for the phone call. I called downstairs and told them that the bed was too low for my use, told them that in other hotels at other times they'd brought an extra mattress up and plopped it on the bed. The woman said, 'I don't think we have any spare mattresses, let me get back to you.' I began to despair. It would be a rough night. Firstly, no more tea for me, in fact no more liquid of any type. Secondly we were going to have to rearrange room furniture to create something I could use to grab and lift. As we were contemplating this, we heard some banging in the next room. Someone thudded up against the wall. Someone cursed.

Joe said, 'I think a mattress is coming.'

And indeed it did.

A few minutes later, two guys were hauling the mattress in and sliding the new one under the one we already had which was tidily made up. In a few seconds they were done and I was sipping on a fresh cup of tea. We gave them a few pounds for their effort and they were gone.

Later when we were near ready for bed, we realized that there we're any electrical plugs near the bed at all. We need to plug in my CPAP at night for my sleeping. This time Joe called down and asked for an extension cord. It arrived in just a few minutes. One of the two men who had brought the mattress to us handed the cord over.

We apologized for being a bother. He shook his head firmly. 'Our job is to make sure that customers are comfortable in the room. Requests like these make us feel like we're actually helping someone. We'd rather someone speak up and leave happy than be silent and leave feeling poorly about our hotel and our staff. Good on you guys for simply asking.'

I suppose he's right. Although, it took a long while to get comfortable to ask for what's needed. Our experience has been uniformly positive when we've done so. People have responded always with effort even if that effort hasn't always given way to results.

So our room had a wooden floor. But the hotel didn't have wooden people, and that's what makes accessibility work.

The Guy in The Hall

There is an unmistakable sound that a walkee talkee makes when it bleeps to life on someone's belt. I heard it when I rolled over, a tinny voice was checking in, the guard walking past our room at the time, answered that all was well. It was dark. Inside the room and out. No light came through the window. I checked the clock beside the bed, it was just after three in the morning. At three in the morning someone was patrolling the hallways, making sure that we all, vulnerable in our beds, were kept safe. Making sure that we could rest without worry. Making sure that our sleep was sound. I woke again a couple hours later having forgotten about him. The man in the hallway. Completely.

During a workshop for self advocates, a woman speaks. She talks of her child. Emotion fills her voice as she described her desperate wish that her daughter be safe. Completely safe. Growing up she herself had experienced extreme bullying, extreme torment, all of which happened under the watchful eyes of those who were paid to care - but who did not. A little girl is watched over by a mother who, knowing pain, protects her, works towards a safer world for her. A little girl who can sleep at night knowing that the boogie man would be taken down in a head lock by a mother willing to give her soul for her child's safety. A day or so later, I'd forgotten the interchange. It receded in my mind like a tide gone out.

It was dark when we got to Tesco. We wanted to rush in and pick up something for supper. We've bought a steamer and cook in our hotel room. This gives us control over our food. As a vegetarian and a diabetic, this really helps. Standing at the door, as if on guard, was a man holding a box of poppies. He did not push them on others, he did not beg people to buy, he simply expected us to be responsible as he once had been. Joe and I searched our pockets for change and found none. We told him we'd stop and get a poppy on the way out. He simply smiled and nodded.

We came out, each with a pound coin in our hands, moments later we were wearing poppies. He thanked us saying that he appreciated us keeping our promise, that many these days had forgotten ... 'to keep their promises' I asked ... 'no,' he said, 'why they can safely go shopping on a Tuesday evening.'

I have not forgotten.

I shall not.

It's not much to be asked.

For the ultimate gift - safety, security and the ability to have a good night's sleep.

poppy image information: Ref Number: 15-43-51Photographer: Ian Britton Camera: FUJIFILM , FinePixS2Pro Date: Jul 5, 2006 7:15:37 AM

Today

Today ...

I saw a trailer hauling a trailer. It looked odd, at first. Then it got even odder. The top trailer was bouncing up and down on the rubber of its tires, as it travelled along the motorway. and suddenly it was like seeing bizarre 'trailer porn'. Like two trailers were going at with explicit abandon like horny teens. I began to giggle, with school girl embarrassed delight, at the sight. I knew I could never fully explain what I was seeing in my mind's eye.

Today ...

as I sat in the car while Joe did laundry, I saw a wooden fence covered in ivy. Ivy grew lush and abundant at each end of the fence. Each plant then reached out, one towards the other. It was easily possible to see the painstaking progress each made in reaching for the other. One could 'feel' the time it had taken, the season after season struggle, for them to get this far, this near. Nearly touching now. It was strangely moving.

Today ...

I saw an old dog being walked by a sullen boy. I could almost see remnants of the storm clouds from the fight 'take the dog out for a walk, I don't want to, you'll do what you are blood well told, I hate you, I don't care if you freaking detest me walk the dog' gathered over his head. The dog walked slowly, glancing every now and then at the boy. The boy's shoulders spoke of servitude, the dogs eyes of service.

Today ...

I watched a grand pa mind his grand daughter in the mall. He was seated on a bench, she in her wheelchair beside him. He was rail thin with steel hair and piercing blue eyes that sparkled as if they'd been freshly washed in rain water. His grand daughter sat in a tiny wheelchair. It was a child's chair decorated like the Disney bike we bought for Ruby, with streamers on the handles and shiny pink metal. His eyes saw her in her chair. But he also simply saw her, all of her. And his eyes were loving and hopeful and proud.

Today ...

I worked on the computer in the lobby of my hotel while a group of old friends met. Five people spoke what seemed like a thousand languages as they switched back and forth easily, translating sometimes, speaking others. One of the women had had a stroke and when she got up to get something from her bag, a few feet away, the man next to her offered to get it for her. She politely turned down his offer saying that it was good for her to get up and move a bit. Then they all talked about getting older and dealing with bodies that had changed. One man said, 'I still walk for an hour each day, but I only go half as far ...' the oldest of the group said, without missing a beat, 'but you see twice as much.'

Today ...

I proved that to be true.

the chair man

I saw her and my jaw dropped.

Well, that's not quite true. I saw her chair and my jaw dropped. She was in a power chair! A power chair!! I guess that's not, in and of itself, uncommon but we were at the airport in the departures area. Her chair wasn't one of those nifty little chairs that fold up wallet size. It was a big ol' power chair, just a tad smaller than mine. I couldn't imagine travelling with my power chair. I simply don't have the courage.

I desperately wanted to chat with her about her experiences and to learn how to deal with transport particularly with airlines.

So ... I did.

She was an elderly woman, someone who had aged gracefully in a life lived well and kindly. She understood my curiosity. She answered in a voice that had a slight tremor and was breathy as if it took extra energy to speak. She seemed to welcome the intrusion and was very willing to speak of her travels and travails.

As it turned out she was not at all new to disability as some of the elderly are. She had never known walking. Had never had the experience of typical movement. She had travelled the ramp from Childhood to Adulthood on wheels. After we exchanged bit of our histories with disability, we returned to the topic of travel. She was just about to tell me of how she arranged travel with a power chair when she was joined by a big strapping man. Her son.

As an aside, I sometimes wonder if small women, mothers of large men, tall with powerful shoulders and strong, long legs, ever wonder at the idea of having birthed creations of such size and strength. Anyways, he came into the conversation, then took it over. She fell silent as he talked about the chair and the airlines and the attitudes and the process and procedures for gtting about.

She gave me a look.

Mothers are good at looks that speak in paragraphs.

Her look said, 'I know, I know, but let it go.'

Probably a lifetime of being a woman, of being a disabled woman at that, had led to an expectation of, if not acceptance or comfort with, being silenced. So he talked of his experiences, not knowing that his story is and was not the same as hers. He spoke of transporting the chair, she would have spoken of the chair transporting her. The concerns of one do not equal the fears involved in the other.

I had to head to my gate, they to theirs. As she pulled away she stopped and put her hand on my arm, a brief touch of affection, 'thank you' she said. As they left, I heard him say, 'What did you thank him for?'

She answered him ...

with silence.

Hopelessly Devoted

(This may be an uncomfortable read for some. Adult Advisory. Strong images, no strong language.)

Ick.

And ick again.

I've read about them on blogs written primarily by women with disabilities. In fact I'd never heard of them until my foray into disability blogdom. Devotees. Men, mostly, who fetishize disability, turning people with difference into fantasy creatures. Popping erections at the idea of a body that moves differently, that has been shaped by disability.

These folks exist in other worlds too. I've twice been very much desired by a 'chubby chaser'. Men who love fat men or women. While it is nice to feel attractive, its odd to the point of disgust, to realize that you, the you that exists within the body, is not necessary, not much even wanted as part of the ritual of seduction.

I was shopping, buying two specialty tee shirts as gifts for friends when I noticed him, he couldn't have been more than 22 or 23 years old. At first I thought he was a handsome young man. Handsome in that casual way that only the young can manage. Fair hair, blue eyes, bursting with youth and sexuality. I saw him, dismissed him and went back to my shopping. But then I notice he kept moving in the store so I was always in his sight.

I'm used to being stared at, but this was somehow different. It was more purposeful, more intense than stares of curiosity or hostility. Now I began to feel uncomfortable. My first thought is about my safety. I am alone here. Joe bores of shopping and often steps outside to people watch. I so wish he was with me. I want his 'ability' to deflect my sense of momentary vulnerability. I quicken my pace. I've chosen one shirt, now I look for the other, quickly checking sizes and styles. Normally I love doing this. I love imagining the gift given and received. I take my time to get what's exactly right. By now though, I'm thinking just about getting a shirt and getting out of there.

He is closer now. I see he's sweating a bit. I see his hand reaching deep into his pocket. Oh, my. I see movement.

I've worked with offenders long enough to know what I'm seeing. I feel slightly sick. Is it my weight? Is it my disability. Is it both? He has fetishized me. I know, just know, by how he is moving, that he is going to try and brush by me. I quickly scan my environment. I am partly blocking the aisle. There is room for most people, certainly someone his size to step by me. In fact it looks like he could vault over me if he chose to. He is closing in. His voice is deeper than I expect from such a young man, he says 'excuse me' and then brushes by, his groin presses against the back of my chair, then moving around the handle, my shoulder.

I'm not going to describe what his body feels like as it slides along my back, my shoulder. I know it all looks innocent. A young man passing an old guy in a wheelchair. I know that, should I protest, I will not be believed. I say nothing.

I have the other shirt. Joe is coming back in through the door. I reach for my gloves which I had set on the counter beside me. They are gone. I need my gloves. I must have my gloves. My gloves give me movement. I know he has them. He is still there. He seems to be feeding off of my upset as we search for my gloves. I panic, knowing he's enjoying it but I can't stop. I am immobilized without my gloves.

The clerk comes to help. We don't find them. She tells me that she has gloves that may work for me and goes in search of them. They are perfect. They fit well. I am so grateful. He stays watching, wandering, until we are nearly ready to leave. he then rushes out to his truck. It's a light blue pick up. By the time I've pushed myself to the car, he has moved his vehicle. I feel his eyes on me as I transfer into the car.

I don't look.

I don't have to.

I know what he's doing.

Finishing.

My disability makes me prone to depersonalization by many. I wasn't prepared for it to make me vulnerable to objectification too.

Confession

An honest encounter.

By the sustained applause, I think the day went well. Several people lined up to shake my hand and thank me for the workshop. Given that this was a Friday and people must have wanted to go home, I was touched that they'd give up a few minutes just to say something nice. I was tired and after shaking the last hand, I was putting things away.

A man hopped up onto the stage and chatted with me for a few seconds. He said that he'd enjoyed my workshop, that he'd taken courses in disability studies, and that he wished I had come to lecture in his classes because I'd opened his eyes to some issues.

I knew there was more behind the chat. He pulled the chair beside me out and sat down for a moment.

Confession.

When he came in he saw me and dismissed the idea from his mind that I could be the presenter. He was then startled by the fact that indeed I was the person doing the workshop and that I had done so competently. He realized that he had stereotyped me and he realized that in doing so he has made assumption and error.

I would never have known that I had been subject to an act of prejudice. I would never have known that his mind had categorized me differently, and less, than I was. I would never have known that I was owed an apology. But I did know, because he came and courageously admitted to what he had done. He acknowledged that he needed to work on how he saw people, what he expected from them and why he so quickly categorizes people.

Many people are victims of prejudice ... and yet go about their day not knowing that someone has tossed racial slurs silently, that someone has homophobic or sexist comments whispering along neural pathways, that someone has devalued and denigrated others because of weight, of looks, of mobility ... It may be good that we do not know. It may be good that, at least, we are spared the pain of experiencing every barbed thought that occurs to others.

But, here, I was glad to know. Glad that he was moved to come and mention that he had slipped up. I don't think he wanted my forgiveness, even though he kind of asked for it, I think he was creating for himself a moment that he will remember. A moment to remind him to be careful of how he sees others. A moment from which he can grow as a person and as a professional.

Give me people who can openly admit error, who can seek out and confess to wrongdoing for which they'd never be caught, who are willing to examine themselves into a state of growth.

I'd like to meet this man in ten years.

I'm guessing he's going to be a very, very, very cool guy.

Questions

I think there is a plot afoot.

I am not normally prone to conspiracy theories. I think that there are conspiracies, mind, but that most of them are conspiracies of coincidence, but even those can be conspiracies of consequence. Right beside my computer is a piece of paper upon which words are carefully written, thoughts carefully turned into questions. It was handed to me by a woman with a disability, who had attended one of my workshops a few days ago. I've read the first question over and over again.

You see she's given me the questions but no way of ever getting an answer to her. No contact information, no email, no address, no phone number. I know she wanted me to answer her questions, she handed them to me and whispered a request that I answer.

Buried, not so deep, in the question is a criticism of the class I teach and the way I present myself in the class to the class.

Yesterday was my second such presentation, though on a different topic, to another group. It went well. Very well, I thought. Then a young man, much younger than the writer of the aforementioned note, approached me with a question. It was the same question. I got chills up my back, it was like they had been secretly in communion with each other and were putting forward a challenge to me. But then, I couldn't answer him. His ride was there, my ride was there, it was time to go. He looked at me with purpose, I knew he wanted me to answer the question.

Here's the question:

Why do you use the word 'disability' so much when you talk. Isn't that labelling people?

To be sure these are not the first times I have been asked a similar question. Mostly by people with intellectual disabilities, never by people with physical disabilities, a distinction that is here important to make. I've decided in to make a feeble attempt at answering a question that I think is important. I'm hoping other readers here will take up the challenge to answer the question too. But I answer by beginning with my own criticism.

People with intellectual disabilities are too often led by philosophies and politics that are developed by non-disabled people who have good, even the best, intentions. And as non-disabled people, people who have never had to go through the process of developing disability from 'horrifying concept' into 'personal self hood' ... disability is often something to be 'denied' to be 'wished away' to be 'pretended invisible'. Disability is certainly not to be loud, to be inconvenient, to be public knowledge. Therefore there is a 'we're all the same' sentiment which is preached and preached and preached again to kids with intellectual disabilities. It's a mantra of 'shame' and 'denial' it begins the journey to a life of 'pretend normal' not 'proud difference'. It's hurtful.

This happens with people with physical disabilities, 'I'm just the same as everyone else.' It happens with people who are newly disabled, 'I'm the same person as I've always been.' Both have the sound of desperation. Because, of course, it's not true. Disability does make a difference. It means something and often something that requires some startling and some even drastic adaptions. My disability came with a cost, to me, to Joe, to my job, to my mobility, to the things I choose to do with my time, to the places I choose to go and the places I actually can go. It did all those things. I had to ride the river of change until the raft pulled ashore at a place emotionally, physically, intellectual and spiritually from where I could begin again, anew. I will never say that I'm the same as before because like everyone else, I'm in life's school room and sometimes the lessons change me.

When I do workshops for people with disabilities, I mention disability because disability matters to the subject at hand. You can't talk about bullying and teasing without talking about disability, or abuse prevention without mentioning disability, or rights without mentioning disability ... when the class attending has a disability. We have to address the very specific needs of the disability community for self protection, for understanding the danger of bullies, for understanding the importance of rights.

I also mention disability because I know many have never been taught about disability as something that one can be 'out' about. That disability isn't a 'label' it's a description. More than that 'disability' is a part of us that gives us the richness of a community, the disabled community may be the coolest gift my wheelchair gave me. Disability gives me cause and purpose and a legitimate voice for both praise and protest. Disability isn't to be denied, it is to be embraced. It's part of the larger human community. Disability defines us not confines us.

Why do I mention disability so much in my workshop? Cause I want to say, 'but ya are Blanche, ya are!' Difference, Diversity, Disability ... all part of the vastness of the social world, all part of the vastness of the human experience, all part of the whole community. Difference, Diversity, Disability ... we make community and the community would be less without us. Difference, Diversity, Disability ... we bring with us challenge and demand for change, just like every single other member of every single other community. We are the same in what we want, but we are proudly different of who we are when asking.

So for those who's plot is afoot. That plot to convince us that we're all the same and difference is to be denied. Take a look at your finger print, now take a look at mine ... there's a message there ... get it.

Four Eyes

It's a moment that teachers everywhere live for, learning becomes alive and vital and important. Because of that, it changes lives. I had one of those moments the other day. I was doing a workshop and during it we do a roll play where Joe walks by a 'gang' of self advocates who call him names. They all know it's a role play but even so they have difficulty calling names. Having experienced it so often it's hard for them to take the roll of bully or name-caller. But they do, and we laugh a lot.

After the first disastrous try where I just let them come up with names on their own and Joe was called a 'wanker' and a 'tosser' ... I restrict them to 'four eyes' or 'old man'. So this time he walked by and they all chose 'four eyes'. 'FOUR EYES, FOUR EYES, FOUR EYES' they called. Before I got to teach a strategy here, one of the audience members said, with great insistence that she could solve the problem of Joe's bullying instantly.

We all turned to her.

'He should not wear glasses when he goes out.'

I sat stunned at the implication of what she was saying.

The room was stunned too, for just a second and then it erupted. From all over the room, starting with a woman who had previously been very shy came protest. Shy woman said, 'He doesn't have to take his glasses off! He doesn't have to change for anyone, certainly not bullies!' They were off. The woman who had spoken, a woman with Down Syndrome was surrounded by protest. She looked shocked. Like it was the first time she was hearing that the bully was wrong, that it was OK to be different, to be tall, to be short, to be fat, to wear glasses, to learn differently.

I just looked at Joe and he at me. We both knew to be quiet. This was not our moment. It was theirs.

It took a second to sink in, the realization, maybe for the first time. That she need not be other than who she is. That her Down Syndrome was not the cause of her bullying. That the bullies were simply, completely, totally, wrong.

Finally they all quieted down and looked towards me.

The class continued.

But it was a different group of people.

They had been changed.

By the messages they gave each other.

This is, the very heart of, self advocacy.

Every Single Day

"Every day."

She has a bright smile and a huge laugh.

"Every day."

She has a quick wit that is always fun never cruel.

"Every day."

She is aware of others and attuned to their needs.

"Every day."

She wants others to succeed and encourages easily.

"Every day."

She reads comfortably and well in front of others.

"Every day."

She is competitively employed.

"Every day."

She lives on her own, not requiring a care worker.

"Every day."

She is who she is and Down Syndrome is part of who she is.

"Every day."

When talking about bulling and teasing, she quietly says it happens ...

"Every day."

Shame.

Every day.

Shame.

Every way.

Shame.

On those who pitch hate.

"Every day."

Lunch

She had two toned hair. Black and purple. Her back was to me when I sat down so I didn't see much of her face but I guessed, correctly as it turned out, that she might have been in her early twenties. She had a walker parked next to her and she sat across from a woman with blond and very busy hair right across from her. I was upset.

We had pulled in to get something to eat. The disabled parking bays were all full so Joe pulled up at the front on the building, where the ramp was, to let me out. A fellow was standing, smoking. He was of the 'way old enough to know better' age. By that I mean there is a certain age that once you hit, much is expected, manners, comportment, a certain degree of grace even of the rough hewn type. I could see immediately that he was curious to watch me get out of the car and into the chair.

I hate being watched, I'm not Flipper, my life isn't Marineland. When Joe was close enough to hear I whispered for him to stand in the vision path of curious and intrusive eyes. He did quickly, having done this many times before. I could see the fellow's movement behind Joe and saw a cigarette get tossed to the ground and then he stomped up the ramp. Clearly insulted.

Arriving at the table I have to work to settle down a bit. I refuse to spend my life angry so I work at calm. It comes easily, the path paved with regular use. We look at the menu and Joe gets up to go order. Suddenly the man appears again. I can see he's a bit drunk. He's standing at my table with a slight weave, attach wool to him and the wall and in twenty minutes you'd have a shawl. He speaks 'I just wanted to watch you get out of the car. He (here he vaguely points in the direction of Toronto) blocked my view on purpose ...' Before I could say anything, the two toned woman turned to him and spoke, 'Oh piss of Cy, you can be such a daft bastard, leave him alone ...' Cy, probably named because it's a synonym for 'sigh', started to protest. She said, 'We've had this conversation before, disabled people aren't here for your amusement, I mean it, piss off.'

He looked a bit afraid of her and he scampered away. She looked at me and said, 'He says he means no harm, but people like him don't understand what harm they do. Mores the pity.'

Indeed.

Got to love it when someone who knows how to slay dragons, takes up the fight for you.

Sometimes 'piss off you daft bastard' really is the onlyest perfect thing to say.

Service Interrupted

We checked into the hotel and wanted to use the business center to run out some stuff I needed to read and work on. The front desk clerk pointed to where the business center was and I pushed off towards it. It was a hard push some of the way because the carpet was thick. However I've been lifting weights and working out so I'm able to manage such obstacles.

When I turned the corner I saw that the brand spanking new business center was impossible for someone, anyone, in a wheelchair to enter. There was a narrow hallway which ended at a sharp right turn into three computers set up high. There were tall stools set up as places for business types to sit and type. The keyboard would have been eye level for me.

I returned to the desk and asked about other options.

There were none.

I was pissed.

They knew it.

But I was also tired and hungry. We'd been up early and on a plane for hours upon hours. I decided to let it go.

After a nights rest and a good breakfast, I decided to talk to the manager about the business center. Something had to be said, I was going to say it. I went to the front desk and requested to speak to someone in authority. A blond woman came out to see me. I asked her to come with me.

We got to the business center and before I could say anything she said, 'Oh ... my.'

I said, 'You know what disabled people call this ...?'

She said, surprisingly, 'Inaccessible.'

I said, 'No, we call this purposeful exclusion.'

'What?' she asked.

'Purposeful exclusion,' I said, 'there is no way anyone could design this, approve this and build this, without knowing that people with disabilities will never be able to use it. That makes it purposeful. The fact that only certain people can now use it make it exclusion.'

'I'm sorry,' she said but I interrupted.

'This is bigotry in concrete, this is prejudice made of steel and glass, this is how builders and designers and hotel managers spit in the face of those with disabilities. They knew, they didn't care, they did it anyways.'

'I'm sorry,' she said but I interrupted.

'You know I pay the same rate here as anyone else. I don't want something for just me. You folks don't call me and say, 'oh, by the by, we've designed parts of the building to exclude you so let us discount your room rate'. No you expect me to pay and put up with it.'

'I'm sorry,' she said but interrupted.

'I know I don't look like much, but I have an important job ...'

She might have still been sorry, I don't know, but she interrupted, 'No one should ever say that about you.'

I wasn't sorry and I interrupted, 'But the hotel did just that. They just assumed us folks with disabilities didn't have business, didn't have need for contacting others and carrying out responsibilities. You may not know this but building's can talk, in this case, the building said ... 'disabled people don't work, disabled people don't contribute, disabled people don't need connection'.'

'I'm sorry,' she said, and waited for interruption, into my silence she continued, 'what can I do to make this up to you.'

'You are waiting for me to ask for a reduced room rate, for extra points on my loyalty programme, I don't want anything like that. I want you to solemnly promise me that you will take this seriously and that something will be done about it. If you can't modify this, then make something somewhere such that a person with a disability can access the Internet in the same way as everyone else.'

She actually put her hand over her heart, and by this time I kind of thought she really did have one, and said, 'I promise you. I really promise you I will do all I can because you are right.'

We checked out and headed on our way.

'Purposeful exclusion' that's the concept that has entered my mind for the first time. I like it and I warn you, I'm going to use it over and over again.

Lime Green

Waiting.

I do a lot of waiting.

Sitting beside my luggage cart passing time while Joe returns the rental car, I watch people rush by. Airports are odd places. People are in transit, from and to, here to there, leaving to arriving. They are, momentarily, off center, off guard. Faces become easy to read, body language screams even when someone is standing silent.

I notice a fit and athletic looking young man. I smile thinking that now young, to me, is 35 maybe 40. He is rushing.

Everyone is rushing.

Except me.

I am sitting.

Waiting.

Watching.

I feel like a crow on a wire.

He is momentarily confused as to which of the several check in counters he is to head for. When he stops, he rests his hand a little too firmly on the handle of one of the two pieces of luggage he has been pulling through the concourse. It is an odd piece of luggage for a man. It has a shiny, lime green hard shell. He is comfortable with it. Only a few years ago men would carry lime green baggage with an 'it's my wife's purse' look on their faces. But now, I'm distracted from my story. Shiny lime green hard shell luggage will do that.

As I was saying, before baggage interrupted me, he leaned too hard on the handle of his suitcase. The handle depressed, the lock giving way. Then it stuck. Almost as if in protest of him using it to rest against. As much as he struggled, he could not get it to extend again. It wouldn't budge. Finally he gave in and headed off.

Only now his gait had changed. So had his body shape. He no longer strode along with a 'tennis in the morning, ten mile marathon in the afternoon, ten pin bowling at night' stride. His shoulders were no longer manly and squared, one was high, the other low. His handsome face was etched with frustration. He had been altered. By a bright and shiny lime green hard shell piece of luggage. Its tantrum maybe why the bag is commonly called a 'carry on'.

Now people looked at him differently. they did not see the short handle, they saw the odd gait. They did not see baggage in the middle of a tantrum, they saw a human body moving differently. They saw difference. They saw disability.

Faces now registered that sad smile. That's 'it's such a pity, he has such a pretty face' look. Before they assumed a life of prowess. Now they assumed a life of distress.

Pity is like that. he's a lazy boy. He never checks his facts. Pity prefers stereotype because it runs on a mono rail.

For a few minutes that man walked in my shoes. I hope that when the handle is fixed, he will have learned something about difference. About pity. About assumption.

He didn't seem a vain man, so maybe it's not a vain hope.

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.