Monday, November 30, 2009

Tree Topper


We got a call and it turns out that Mike and Marissa, along with Ruby and Sadie, were visiting family in the Toronto area - they wanted to stop by and welcome us home. Joe had been putting up the tree, so it was a perfect time to have the star placed on top of the tree.

Ruby was having a wonderful time putting ornaments on the tree and for a while we thought we'd have to explain to people why the ornaments stopped about a third the way up the tree. But then Ruby began to eye the higher branches and she'd ask her dad or Joe to lift her up to place them just where she wanted them. She was very particular with where the ornaments went and had a surprisingly good eye - either that or there really isn't anywhere where an ornament doesn't look good.

But when it came to the top, I paused, we love our tree top star. It is very plain, no lights, no sparkle, and after years of searching this was the one that captured our hearts and our imaginations. I asked Ruby if she'd like to put it on top of the tree, she nodded. I explained that it was the most important decoration of all. She looked at it and them me like I was mad. After all she'd put on shiny bells, sparkling crowns, wacky pigs and a very plump penguin.

So, feeling that it was the right time, I told her about the star and how it lead to the discovery of a baby who would grow up to be the King of Kings.

She nodded and said, 'Like Cinderella.'

OK, well, it was a start.

Sunday, November 29, 2009


Oh, my, messy.

I'm up at just before 2 in the morning having gone to bed at 6 in the afternoon. The time change, the early morning up to fly, the long day on the plane, it was all just too much. We tried to stay up a few hours longer but after barely a struggle gave up. Today is going to be very, very, messy.

In fact, I have the 'inside messies' that come from big transitions. For over a month we have been focused on the single task of getting from city to city. A 16 city, 18 lecture, tour. And if you consider that I did a three day tour immediately before leaving, that's a 19 city, 21 lecture tour ... the longest, in both time and distance, of my career. So everything, every decision, was made regarding getting from one place to another and having the energy to do the work when getting there. This means early evenings, quiet weekends and the ability to lean on each other when strength was low. But now, that's over, it's time to shift focus back to real life. A life with multiple purposes, a life with more complex demands, a life where I play a part but do not have a starring role.

I look over the next few months and the goals set and the 'inside messies' increase. I start thinking about how big the tasks are, how small my abilities in comparison, how important the work, how frightened I am to begin. Lectures, though they take effort, all all about the past. Things already done, stories already told, experiences already processed. It's telling the tale of the work thus far, and work accomplished always looks easier than work yet to be done. The Dave of 'have done' is way more confident than the Dave of 'yet to do.'

As I have mentioned many times, perhaps too many, the work of the last three years may be the most important of my career. In a few weeks Vita and I have to figure a way of documenting and accounting the work done, the shared vision, the difficult choices, the common goals that came about from setting 'safety' as a priority in service provision. This needs to be something created by 'all' not 'one' ... it's going to be a messier prospect than anything I've done before. I can't just shut my door and type for days and be done with it. That would be thieving the victories from every single Vita staff. It is going to be finding a coherent voice to go with the single vision that's going to be the challenge.

But that is tomorrow. Next week. Even next year. Right now, I've got to figure out how to get back to bed and back to sleep. I don't want to spend the rest of today as a time zombie.

... forgive the ramble today ... do you ever get up in the middle of the night with the 'inside messies'? ... what do you do to clean house ...

Saturday, November 28, 2009

The Favour

I can't express what this trip to the United Kingdom has meant to me. Truly, I can't. I've had so many private moments with so many people, moments that affirmed, moments that challenged, moments that made me laugh. I'd sit down and attempt to write these memories into my blog and then simply save them, I realized somewhere before typing the first letter and writing the last paragraph that these moments were shared, private and had a degree of intimacy to them.

There are things I know now, because of these interactions that I didn't know before. Things about progress and hope, things about direction and determination, things about courage and obstinancy. Little chats sometimes happened sponateously at breaks. Other conversations happened because people came purposely early. Even others happened spontaneously leave both of us surprised.

In some ways it was as if I became a little more human on this trip. I've been over here often enough to stop being DAVE HINGSBURGER THE PRESENTER and simply be Dave. A loss of a bit of awe made for things much more personable and a lot more real. I appreciated each person's effort to connect with me. I appreciated each bit of insight I gained from each interaction.

From self advocates to parents to care providers my audiences were varied in their make up and in their need but they were united in their purpose. Vision is not lacking. Ideals are not dead. Hope now fuels determination, a reversal that needed to happen.

So, I'm thankful all.

I leave changed.

I hope I returned the favour.

Friday, November 27, 2009


Lecture 17 was a big tick. We finished up in Sheffield with a rousing day with a lovely audience. We have a printed schedule we are following, when the talks go well we give a big tick, when they go not so well we give a smaller tick. Like, i say, that was a big tick. Then the drive down to London and the last lecture of the tour. The traffic was terrible. The two and a half hour drive turned into a three and a half hour drive and then kept counting. We had figured we'd get in, have a tea in the bar and then get a good night sleep.

The hotel was barely accessible, we had to fight to get through doors, into elevators and the room has a bed that is so low that a new born baby wouldn't get hurt falling out of it. Our neighbour watched TV at a volume such that those in the bar at the other end of the building could hear it. After an hour or so we called and asked politely, because a fist could easily come through the wall, for the sound to be turned down.

So, already tired, I've just had my worst sleep of the entire trip. Now I gatta get up and be 'inspirational' when all I want to do is just call it a day - 'lost this one' and let it go. But I won't.

I wanted to run away from home once. I talked myself out of it. I'm trying to do the same here.

Thursday, November 26, 2009

Norman Remembered

I never met Norman, but I love the guy.

At my workshop in Bradford yesterday, a woman named Christine (I think I am remembering wrong but have no one to ask, if you were there and her name was not Christine, please correct me in the comments and I'll change it in the text.) put her hand up just before break to say something. I made a mental note to call on her when people came back. I was launching in when I remembered, I stopped myself, and asked her if there was something she wanted to say.

Christine, in context of our discussion about relationships and reciprocity, told us about her husband Norm. I would soon been their 30th anniversary, but Norman died of a siesure when they'd been married nearly 19 years. She spoke of those who said that they wouldn't last, she spoke of their life together as a couple, he was good at pushing her in her wheelchair, she was good with money. Norman had a job where he worked hard outside, when his siezures took him, she would call his workplace to ensure that he got sick pay. She had the gift of gentle assertion.

Over the day, Norman came into the conversation. She told us how when she was in the wheelchair people would speak to Norman and not to her and Norman would say, 'She can talk you know.'

After she'd talk about she would sit back and you simply knew that Norman was holding her, his memory was wrapping around her. She spoke with such love and respect for the man she loved for so many years.

At one point we all gave her a round of applause, why not celebrate 30 years of loving - both don't need to be there for that. When we clapped she gave two huge thumbs up and said, 'That's for you Norman.'

I said it because I had to. I wanted her to know that it was because of women like her, women who came from a time where disability was seen with a backdrop of shame, women who still lived their lives with purpose and passion. Doctors can diagnose, but she had greater power, she defined herself. People with disabilities have freedoms today because women like her lived yesterday. I wanted her to know that. I get teary at these moments and was aware that an audience was watching but I didn't care, I wanted to know that she had led a life that left a mark. I wanted her to know that she had created out of the rack and ruin of low expectations and limited opportuntities a rich life. That's what heros do.

I know why Norman loved her. I know why he still does. Happy 30th the two of you.

Wednesday, November 25, 2009


Just because I like things to come in three, and just because I don't have a coherent theme for today ...

One thing I like about being in England. Marmalade and toast. I do not eat marmalade at home in Canada because it tastes like orange rinds and sugar. When visiting England, I have it on good authority, God butters his toast with marmalade. It's a little treat every morning, I take the tiny jam bottle and pop it open and slather toast with a thick spread of pleasure.

One thing I like about a lecture tour is that every now and then something magical will happen. A connection will be made between myself and someone in the audience. It becomes clear early on that what I am saying is being deeply heard and deeply appreciated. Sometimes it seems like a verbal salve is going on to a bruised soul. Sometimes it seems like someone waiting for affirmation is receiving it. Sometimes I don't know what's happening, but I know that it is. This happened today in the workshop. About midway through the day I noticed a pair of eyes, that were looking at me but seeing self. At the end of the day a tentative handshake and a trembling 'thank you'. It matters that I matter. It matters that my words were heard. It matters that a connection was made - even one of the ethereal kinds.

One thing I'll never understand, on first go, is anything said in a Geordie accent. I have no idea what those people are saying but by God they speak with passion. But oddly, and no kidding, I met a guy with Cerebral Palsy who spoke with a Geordie accent and I've never heard a clearer word out of any one's mouth. Now that's just funny.

Tuesday, November 24, 2009

Week Four Begins

We drove away from Newcastle Upon Tyne after finishing my first lecture of the final week. Lecture 14 to be precise. I managed to work with Ted our GPS to get Joe to the motorway and then, for the next 50 miles, I slept. The day after day grind of travel and lecture is beginning to really take its toll. We are both feeling the pull of Saturday and the flight home.

Yesterday Joe and I had an intense discussion about what food we'd be ordering in on Saturday. Would it be the Garlic Pepper or would it be B.B.Ques? We discussed this with a passion once reserved for great literature and future plans. We came down from the discussion dizzy with anticipation for Crunchy Tofu in Orange Peel sauce.

Our trip has been well planned in that our last week gets us ever closer to Heathrow, we've been all over England and Scotland and now we are wending our way slowly home. We love the time here, we love the sense of being away, we appreciate the opportuntity to spend a whole month meeting people and offering training. It's become a huge part of how we spend our lives.

But we can do without the hastle of hotels and dealing with the petty annoyances of travel. We are tired of restaurant food and the ready meals we pick up from the supermarket. We are both missing my power wheelchair and the independance it gives both of us. Joe caught his fingers in my wheelchair today and had to spend time washing his bloody hand clean.

But it is made worth it by small moments. Wendy and Daniel, two people with disabilities who attended my workshop today, emphasized the points I made about relationships by talking about reciprocity - not with a big word - but by glowing when she talked about his poetry, and he talked about how she lit up when he came into a room. They clearly expect much from life, they expect their rights as adults, they hope for a wonderful life together. Their words and thoughts entered easily and almost seemlessly into the points I had been making. I couldn't have planned their presence or presentation better.

So we look forward to home and what that means, we will work through this week, city after city, with an eye on being done. We know that in a month or two we will forget the unclean hotel room, the inaccessible doors, the steps where there should have been a ramp ... and we will remember Wendy and Daniel, Duncan, and Robert who wore a yellow shirt today and who listened carefully to everything I said and when doing an evaluation said, 'He was pretty good'.

Monday, November 23, 2009


I've always been unhappy with my shoulders. An odd admission, I'm sure. We all like or dislike various parts of our physical being, I like my eyes, I don't like my shoulders - let's just leave the rest out of it for now. When I was a little boy my grandmother, the one that was the more (um) critical, said, 'Awful narrow shoulders for a boy.' And it's true. It would be way more proportionate for a body as big as mine to hang from big manly shoulders. Instead I've got these wee little bumps only a few inches from my neck. Oh, well.

I thought that maybe being in a wheelchair and pushing myself around I might develop shoulders of steel. And maybe I have but they would be buried under mounds of baby fat. So I make my way through the world with shoulders more suited to Mickey rather than Mighty Mouse. Big deal. In fact, I've come to seldom think about my shoulders and wouldn't have except something happened today.

We were checking out of the hotel in Edinburgh and as is our pattern, after breakfast I stopped in the lobby to read as Joe went up to finish packing and then call for the porter to come and help with the bags. This way I'm not in the way, this is good planning because I tend to be in the way. We came upon this practice because one day when Joe was packing to get ready to leave like he always does I gave him a bit of (um) supervision. To which he responded that I'd probably be happier waiting in the lobby reading so I wouldn't be distressed with which bag he put which shirt in. OK, be touchy.

So I was reading my book, completely lost to the world when I heard a startled cry. I looked up to see the elderly man (from yesterday's blog) take a stumble just a little behind and to the side of me. He took a step and wavered another step and it was clear he was going to fall. He reached out for the closest thing and grabbed hard onto my shoulder. There was strength in that old hand. You knew that it, as part of a pair, had worked hard, made a living, raised a family. I braced my back to take his weight, he held on, steadied, held on a little more to be sure, then let go.

He looked embarrassed, I asked him if he was OK as a means of starting conversation and letting him know, by my tone of voice, that all was OK with me. 'I'm not far off a wheelchair,' he said, 'but I've been putting it off.' I smiled and said, 'It's not as bad as you might fear,' He smiled and said, 'Well, I'll face that when I need too, as long as there are strong shoulders around, I won't fear falling.'

I've decided, that for today, I like my shoulders. They may not be broad, they may not be manly or muscular, but they are - as he said - strong.

Sunday, November 22, 2009

Hi, My Name is Cindy and I Am An ...

At breakfast I get a new motto for life:

We were seated overlooking a sunny morning. An elderly woman rushes by, surveys the available tables and then looks past us to her husband toddling along using his cane. She asked, 'What table would you prefer.' He said, without a hint of irony, 'I'd like one about a foot before collapse.'

At the movie theatre I get a new perspective - yeah it is that obvious:

We went to see A Christmas Carol in 3D and arrived a wee bit early. We sat outside waiting for the theatre to be cleaned from the previous showing and then we were let in. There were others waiting so we let them go first. When we got to the top of the ramp there was absolutely no wheelchair seating anywhere. There were three small stairs and then, past them, a perfect place to park the chair. I wanted no fuss, I'm not an activist every moment of every day, I got up. Joe hauled the chair up three steps and then helped me balance as I walked up the steps. As I was getting in the chair a grandmum with her grandson spoke to me, 'The facilities for the disabled here are terrible.' I nodded. Her boy, an outgoing kid said, 'Even I know there should be a ramp and I'm just 6.'

At the Marks and Spenser cafe I get a new appreciation for humour in tight spots:

A mom has bought a girl of about 4 one of those pre-inflated ballons that kids desperately want one minute and then turns into a horrible bother the moment it's purchased. She was trying to get it to stand up against the wall, propping the bottom of the stick against a plate. It would not stand. It kept crashing to the table. Little girl's whine increases in intensity and volume. She wants her balloon kept safe. Finally she says to mom, 'Why won't Cinderella stand up mom?' Mom says, 'She's drunk.'

And that dear readers is a glimpse into our Saturday in Edinburgh.

Friday, November 20, 2009

shhhh revolution in progress

There's been a quiet revolution going on at work. One that no-one, save me, may be noticing. I've been working at Vita for three years now and my wheelchair is well known, Joe is simply a fact of my employment - get one, get the other - as he helps me get around from place to place. When my wheelchair broke, I worked from home. When I'm away I check emails every day. My goal is that no one waits for an answer for more than 24 hours. Sometimes this makes for long evenings, but it's worth it to feel like a valued member of the team rather make that fatal drop out of the loop.

Recently our Behaviour Therapist has had horrible car accident. Now recuperating at home she wishes to be part of the team. Every part of the organization from human resources to executive director have to make decisions as to how to make her wishes possible. Slowly but surely things moved along. I've been following the emails of teams of people from the various locations where she consults have pulled together to figure out how she can best support them (she's good at that) but also how they can support her (they are good at that too).

It seemed like her temporary Visa pass into the world of disability means that she didn't have to give up citizenship in the world of work, of value, of contribution. People are beginning to understand adaption and the benefit of flexibility. The idea that she simply be sidelined wasn't ever really considered.

Workplaces can be places where all are valued and all are supported. I'm watching, from the sidelines in my wheelchair and I'm cheering them along. This, may just be, the future.

Thursday, November 19, 2009

Scottish Youth Theatre

"They were right here?" I asked.

"Yes," he said, 'right here in the heart of the building.'

I was in the Scottish Youth center talking to the fellow who managed the rooms. He's an older guy who takes great pride in the building. He has just told me that the room I am presenting in is the formal jail attached to the court building. Even though the building is renovated and there are no traces left of cells and shackles, there is still the chill damp air that lets you know you are in a basement room. Looking up you can see walkways where guards would have strolled to keep an eye on you below.

The day began and at one point someone said something very funny and the whole audience was laughing. There were marvelous accoustics in the room and the laughter bounced off the walls around us. Changing the chemistry of the brick, laughter is the alchemists dream as it can turn grisly memories comedic gold dirt. 'Comedy is tragedy plus time,' Carol Burnett is quoted as saying.

Over the day I began to think of the room as less of a renovated jail and as more of a theatre for youth. I think because here in the beating heart of the building were people learning, laughing and expressing hope.

Buildings, like people, need their heart changed before renovation is complete.

Wednesday, November 18, 2009

It's a Slam Dunk ...

During the second break in the lecture day, Duncan came over and began chatting with me. He is a big man with a soft voice. At first we just chatted about some of the things he's been up to, but I had a feeling that he was there to tell me something, tell me more. So we kept chatting. Then he said, 'You know how you talked about saying no and keeping safe?'

I said that being safe was important.

He nodded, knowing.

Then, quietly, he told me the story of a walk home to his parents place. He spoke to me as if I was a local and knew the reference points for his walk. 'Up by Queen Street there ...' he'd say. My stomach was churning. These story never end well, they always involve pain. Before knowing what happened I looked at Duncan. A big man, a gentle demeanour, a ready smile, a friendly persona ... an easy guy. Don't tell me that someone hurt him too, don't tell me that in th minds of others his disability erased all that's good in him. Don't tell me, Duncan.

But he did tell me. Never losing pace. There were a group of kids, they took him on, one with a baseball bat. They terrorized him. That's the word he used, 'terrorized'. He understood that he was being attacked because of his disability. He understood that what was happening was wrong. More than that he knew that his treatment was criminal.

So. He sought justice. He put together a little team of support, his parents, a family friend, a key worker. And he told his story to the police. It was wrong. It needed to stop. Other people with disabilities needed to be protected.

Then he stopped. The story over.

I looked at him, he was calm. I was hanging over a cliff.

'What happened?'

'They are still in jail,' he said. His smile wasn't one of revenge, it was a smile of a man who had a job to do and did it.

I asked him if I could tell his story to the audience, write it for you ... he said that I could. The audience, on hearing his story burst into applause for him. He grinned. Knowing he had the heart of a hero, I grinned back at him. And now you, whereever you are, tip a pint, raise a glass, or punch the sky ... for the big man in Helensburgh

Duncan. You are the man!

Inch by inch the community is reclaimed by people with disabilities. Duncan, he expected something from the heart of the community - justice. And by God. He got it.

Tuesday, November 17, 2009

Books By Covers

You know how they say, 'Don't judge a book by its cover?' Well, I hate to tell you, I do that all the time. Right now I'm reading Drood by Dan Simmon's and I noticed it because it's dark and broody cover caught my attention. Ditto for many other books I've picked up over time. And I can say, my attempts at judging books by their cover are at lease equal to my attempts to judge books by their reviews on amazon 'waz gud'.

So as we were driving the final few miles of a very long drive, from Inverness to Helensburg, we tensed up. We couldn't see any hotels on the strip, all we could see were decrepit Guest Houses. Yikes. Then it got a little better when we found this place, one of the Innkeeper's Lodge chain. Joe pulled in front and entered what looked to be a YE OL SCOTTISH PUB. He came out with a couple of keys and we drove to the back of the building. He looked at me and said, hopelessly, you want me to go check. I said, 'You'd rather go to the guest houses back their and dine with sea birds and rodents?'

We have found it difficult getting accessible rooms from huge North American hotels, from established British Hostelry chains. What awaited us here? I said to Joe, partly because I was desperate to get into my room. What with a full day lecture and a four hour drive following, I was tired. We made our way in, up a ramp that wasn't quite square and down a long hallway. The room had the double peep holes, my hope rose. The door was wider than the one on the opposite side of the hallway, my hope rose again. The door opened to a large room. Large enough for my wheelchair, I sailed through the door. Yesterday I'd been in a 4 star hotel but had to get out of my chair to get into my room.

The bathroom is completely, perfectly equipped with a walk in shower, bars beside the toilet that are placed for human use, easy roll up access to the sink to shave. I have never cried while looking at a bathroom before, but I did now. Suddenly we were both energized. Welcome will do that.

We went down to the pub and Joe had a pint of Tennents and I had a green tea with cranberry (I was feeling frisky). On their bill of fare they had two vegetarian specials. We each ordered the vegetarian wellington with tatties and veg covered in red wine gravy. The pub looked like it had been here for years. Yet even it had wide doors and a big accessible bathroom.

We'd judged this book by it's cover and got it wrong. But then it was a hotel not a book, so what does that stupid saying mean anyways?

We're here for one night.


Sunday, November 15, 2009

CP - Cocky and Proud

Does anyone out there know someone young?


Joe and I were turning into a disabled parking bay at Tescos yesterday, we had to pause as a guy with cerebral palsy was walking by. He wore a black tee shirt that had the oddest, coolest, graphic on the back. I only got a glimpse of it. There were two figures, I couldn't even identify genders, fighting each other. Both had crutches that they were using like samurai swords. So, who are these crippled avengers, these hobbled heroes, these mighty gimps? It was a mass produced tee shirt, of that I'm certain.

And how freaking outrageously cool of this guy to wear it. Talk about identity politics, talk about in your face disability pride, talk about being 'out'. I love that kind of stuff. I love the discovery that shame when confronted, when pressed, becomes pride.

So, someone, please.

I don't even know how to search for this on google.

Here in Scotland, where we are driving from Aberdeen to Inverness today, on a gray and rainy day ... if you are stuck in, bored and wanting something to do ... go find me HANDI-MAN.

Saturday, November 14, 2009

What's Wrong With Dave


I woke up feeling this incredible pain. It took me a few minutes to decipher what it was. I went through the old age checklist: no, I don't have to poo; no, my heart is just fine; no, I'm not tangled up in the sheets. Then there were the tests, 'OK, Harry, release tne gas' ... OK, that wasn't it. 'Check the arms for feeling,' OK, that's not it, 'Double check the poo meter,' Really, that's not it.

So, it wasn't physical.

Hmmmmmm, emotional.

There is a minefield at 4:40 in the morning. Before dragging myself through an exhausting emotional checklist that is as traumatizing as it is diagnostic, I took a breath. I'm in a hotel. I've been lecturing for two weeks. It's Saturday. ... Wait, wait, wait, .... I'm homesick!!!

Travel and work are fine on the days that you travel and work, but they can be long and lonely on the days you have nothing to do. People are always nice and offer to entertain you but when you want to be enterained by your couch at home in Toronto, no one can compete with that bit of love and affection. So, we are going to drag our selves up, and go do something. I think that that's the problem. At home, weekends give permission to do nothing but on the road you think, 'This is the one time I'm going to get to see where the prostitutes were all killed at the Aberdeen docks in the MacBride novels, I'd better do that.

So we will drag ourselves down there and somewhere over the day the spirits will pick up. Besides, tomorrow is Inverness and travel and work again. Our minds will be filled with activity so we won't quite notice the growing hole in our hearts. For home, for friends, for soft couches, for my office at work, for my power wheelchair, for my own ... here I'm getting teary ... bed.

Friday, November 13, 2009

Reclaiming What's Lost

We were staying somewhere North or East of Wales and when flipping through the television stations came upon a Welsh station. We watched for a bit in fascination and admiration as we are aware of the Welsh determination to reclaim their language. I once joked in front of an audience in Wales that I desperately want to kiss one of them before I die, I figure if they can get their tongues around all those letters in those words, they may just be the best kissers on earth. Sadly, I've never been able to test this theory.

The same is true here in Scotland, we were watching the Eggheads on BBC2 Scotland and as soon as it was over a pair of youngsters came on air speaking in Gaelic (pronounced Gay Lick, and, of course, there will be no comment made). Again, I was impressed with the way the two kids were injecting fun into the program and, I knew, thereby teaching the language to others.

I thought about this the other day when Joe and I stopped on the Motorway to have a cup of tea and a bite to eat. As we were eating a young man with Down Syndrome, wearing the uniform of the restaurant, was busing dishes and wiping tables. He seemed a bit nervous in his job. He nodded, friendly like to all the diners who nodded, friendly like back at him. He came to us and noticed that we'd done eating. Like a thousand busboys before him, he asked if he could clear the plates. We leaned back and let him take the large plates. Joe said, smiling, 'This will give us more room to relax and have our tea.'

Out of no-where the bus boy advanced upon us with a small pot of hot water and he proceeded to refresh our tea. Very cool. We thanked him. After returning the water he was on at the next table, I asked him how long he had worked there, he said that he'd only started a couple of days ago. It was his first job. His face lit up when he said 'job'. It was like he never imagined it would happen, now here he was working.

'You must be proud of yourself,' I said. He now turned bright red and I could see he was embarrassed. His smile let me know that it was OK that I'd said it. Joe and I began to finish up our tea and get ready to get back on the road. He saw our empty cups and came and took Joe's and as he was picking up mine he said, 'Yes, I am proud.'

Disabled people are reclaiming language too ... the language of pride, the language of employment, the language of relationships. It still sounds foreign to the ear, but, aye, it's a beautiful way of speaking.

Thursday, November 12, 2009

Ramps and Royalty

We are staying in an old manor that has been converted into a beautiful hotel. We arrived after dark and drove through the grounds and rounded the corner to see this magnificent building. It was just like in the movies and we gasped at the beauty and the imposing nature of the building. Wow. Us.

Inside the hotel we were assisted ably and friendly by a man of about my age. He would be described by Quentin Crisp as 'one of the stately homosexuals of England'. He told us a bit of the history of the building as we were making our way to our room. He had helped load the luggage cart but then seemed to think his job was stolling to our room with us, engaging in witty banter, all the while with Joe pushing the heavy trolley along. After they unloaded the luggage they came back for me, and again, while Joe pushed me, he walked along with us ... ensuring that I got equal attention. This was what you'd call a truly democratic Queen.

As we got to the door he said, 'I owe a real thanks to our disabled guests.' Here he paused waiting to be asked, I did. He then explained that the building was renovated to accomodate people with disabilities, there are ramps where there were stairs, there were elevators discretely placed around the building, there were wider doors and easier access. I nodded, thinking I knew where he was going. 'My old bones just wouldn't have been able to stand a few more years of those stairs. There were stairs everywhere, stairs for no reason, stairs just to keep the maids and butlers fit. Without these changes I'd have had to leave this job.'

Ramps. They give me access. But more than that, this one allows a lovely gentleman to continue to reign over the manor. To the Queen, and long my he reign.

Wednesday, November 11, 2009


I noticed, I spoke, and the world froze. I may have been on 6 or 7 when I noticed that my father's legs were not the same. One of them had a huge bite taken out of it. Though it was all healed, one could see the jagged wound that it had once been. 'Hey Dad,' I called out, 'What happened to your leg?'

Both my Mother and my Grandmother shushed me and pulled me away from Dad. Even though they were quick, I saw the dark clouds form behind my father's eyes. I was shocked, he was an easy man, not quick to judgement, not quick to temper. But I had done something, asked something, that was never to be spoken of, ever.

Later, as I learned in school about war, as I stood at the Cenotaphs with a poppy on my lapel, I remembered my father's leg. I knew he had been in the war, not from him, but from others in the family. Dad, he didn't talk much about his past, it was like his minute of silence had become a lifetime rememberance.

One day he and I were alone at home. I was an odd and ungainly child, a wee bit hard to take pride in, but my father and I had an uneasy peace. I asked him that day to tell me about the war. To my surprise he did. He spoke in quiet words about his work as a stretcher bearer, about his wounding just before Christmas day, he named countries he'd been in but never visited, he spoke of people who's names were still precious to him. He didn't talk long. My dad doesn't take long to say what he has to say.

I wonder, I suppose like most do of Dad's and Mom's who survived the war. Who would Dad have been if he had lived unwounded by a sniper's bullet? How would he live if he had dreams free of the horrors he'd seen. The cost was more that a leg that looked like it had been bitten.

The cost was a lifetime of silence, a lifetime of keeping secret, the story. He fought to protect his country, he keeps silent to protect us.

It's not hard to truly love those who keep the silence, even when the memory still hurt.

Tuesday, November 10, 2009


I recieved an email from someone saying, 'I can't tell if you are having a good time because I don't read of you visiting pubs ...' I can see the confusion because I'm on a trip to the UK, but I thought I should take a moment and outline what that means. It means we are here working, I'm lecturing in 18 cities in 20 working days. Our only days off are Saturday, as Sunday is a travel day to the next destintation.

The daily routine:

up, pack, load car, breakfast, meet people who lead us to the lecture hall

lecture, unpack books, sell books

pack books, load books

drive to the next hotel

unload car, unload me, eat, watch 20 minutes of tv, read for a bit sleep

up, pack, breakfast, meet people who lead us to the lecture hall

Not a lot of room, especially with drives up to 4 hours after a long lecture day, for going on pub crawls and seeing the sights.

But this is not to complain. We love this adventure. We meet people, have vibrant conversations, I hope I leave them with ideas, I pick up ideas to bring home. We were talking yesterday that we work harder this time of year than any other time but it still feels like a break.

You may get a pub story at some point, but it'll have to be accessible and we'll have to be awake.

Monday, November 09, 2009

Shopmobility Part Two

After passing the driving test for the scooter at Shopmobility, Joe and I were off to the mall. Soon enough, I understood the rigourousness of Steve in his taking me through my paces. The test involved me having to do a forward figure eight around two orange cones followed by a backwards figure eight ... doesn't sound difficult except the cones were only a few feet apart. It wasn't quite the speed or difficulty of a racing video game but it was certainly challenging enough.

As soon as I was in the mall, I understood why the cones were set at an impossible closeness. The scooter had to fit down narrow aisle and weave through tons of people. My power wheelchair has incredible responsiveness to command and can turn and manoeuvre in very tight spaces, scooters, the size of the one I was on, need much more space. I did manage to get where I wanted to go and buy what I wanted to buy with little enough frustration.

What was marvelous was the freedom of movement that the scooter allowed. Again to have Joe walking beside me, not labouring behind me was a wonderful experience. Too, I was able to carry all our goodies in the basket in front of me, we were able to chat freely and just enjoy being out.

Since Steve had brought up the issue of invisibility, since he had cautioned that I had to drive the scooter preparing for people to step in front of me, crash into me, or trip over me, we watched for it. Remember I am a very big man, and when on a scooter, I look like I got my drivers license from Barnum and Bailey. It's really hard to imagine someone not seeing me.

But what we noticed, really noticed for the first time, was something other than my invisibility, which we have experienced for a few years now. What we noticed was how incredibly visible Joe was when with me. It was like people were trying to figure out how we came to be together, was he an assistant, was he a friend, and a very, very few wondered if he was more. It was like they couldn't imagine what it would be like to be me so they wondered instead what it would take to be Joe.

Uncomfortably, I remembered the glances I got when I was a direct care staff working with people with intellectual disabilities. People would give me either a 'you are a saint' smile or a 'I couldn't do what you are doing' nod. I guess special people need special people ... oh how wonderous is the love that turns able hands to the work of God. Oh, my.

But visible or invisible, it didn't matter. We have long since left behind the need for the approval, understanding or acceptance of strangers - even daresay family and friends. Difference experienced or difference lived with requires a hearty sense of self and a powerful grasp of what is and what is not important.

Joe walking beside me - important.

Pretty much anything else - not so.

Sunday, November 08, 2009

Shopmobility, part one

He walked over to me, limping, heavily dependent upon a cane. His hair was long, wild and looked like it hadn't made friendly with a comb for a very long time. His glasses were thick and dark rimmed. His manner was serious, very, very, serious. Our meeting was precipitated by a quick, almost rash, decision. We had just parked our car in a multistory lot in a disabled stall right by 'Shopmobility'.

We've seen signs for 'Shopmobility' for several years as we've travelled around the UK but had never stopped in. all we knew was that they let out scooters, for free, to people who wanted to use them to shop in various areas, mostly malls it seems, throughout the country. We had been told that the mall we were in was huge and so I asked Joe to check out to see if they had any large scooters available. They did. We went in and met a lovely young woman who explained to us a cumbersome sounding process of registering. It seemed a lot for us given that we only wanted to use one for a few hours to go shopping in the mall. She didn't want to disappoint us so she managed to figure a way to jigger the rules so that we could get a scooter.

The one thing she couldn't get around was my 'assessment' and 'driving test'. I was told that the assessment really was just making sure that I fit the chair and that the chair would suit my needs. After ten minutes of waiting, my guts churning - I do assessments, I don't get assessed - I almost told Joe that I'd really rather not. Then, across the parking lot came a wild mop of hair driving a scooter at top speed. 'This would be the assessor guy?' I asked and she nodded smiling.

His name was Steve. He didn't look like a Steve. But he was a Steve. He came over, sat down hard on a chair beside me, laid his cane across his knees and started to talk to me. Very little of what he had to say was about the scooter itself. After outlining the boundaries within which I was allowed to travel, he began to talk about what I would experience on the scooter itself.

'You will become invisible,' he said, 'you have to be prepared for people to no longer see you, no longer notice your movement, it's like you cease to exist.' He talked about the attitudes of those in stores, the reaction of patrons in restaurants, the annoyance of those on elevators. I listened, politely, and then assured him that I've been in a wheelchair for nearly four years and 'get' that people 'don't get it'.

He said that he realized that new users to the service were almost always traumatized the first time out in a scooter. 'Most of our customers do not have a permanent need for a scooter. Most are elderly, some simply can't walk long distances, few of them see themselves as disabled. Suddenly, on the scooter they experience a sudden loss of status. Some have come back crying, some angry, most are just confused as to why everything seemed so different.'

Turned out that Steve really cared about people who came into his Shopmobility center. He wanted to give them a little preparation for how those who stand react to those who sit. 'My job should just be getting people familiar with the scooter, but in fact, it's about getting them ready for something much, much, bigger.'

Little talk done, we went out for my driving test.

I passed.

Saturday, November 07, 2009

foot fetish .... no

I'm in love with elephant feet. Not kinky love, so the prudish amongst you (of which I think there are truly few) may read on without fear of some purient and tittilating confessional blog. Part of me are wondering how many of you know what elepheant feet are and how they are used. So please share.

I encountered them a couple of nights ago when we checked into a hotel and found that the accessible room was lovely and large, its bathroom wonderfully organized with plenty of room for showering, sitting and shaving. But the bed, my goodness gracious me, it looked like it was made for someone of very limited height. I could easily get in but I could never get out. We weren't quite sure what to do.

At the front desk we explained what the problem was and the woman said, 'Oh, no problem we've got elephant feet.' As she said so, I pushed my little togs under my wheelchair, they were badly swollen and I wasn't sure if I had been included in her 'we'.

Turns out that elephant feet are these huge things that raise furnature like beds. They are round and grey (thus the name) and the legs of the beds fit snugly in and as a result of their addition a low bed becomes a high bed.

But I'm in love with something even rarer than grey, round elephant feet. I'm in love with a hotel that would bother to stock them, that would willingly use them and that thought nothing of the extra work that made me comfortable.

A little bit of heart, a little bit of thought, makes a whole lot of diference.

Friday, November 06, 2009

A Story for Dave

"May I tell you what happened to me?"

Throughout the day she had been a shy particpant. She never offered to come up to do a role play, but always did when asked. She had one of those smiles that was 'too ready', it made her look younger, less formitable, and like she was ready to laugh at herself before others had the chance to ... that, and of course, she was beautiful. I enjoyed to growing sense of confidence she had during the day, learning to claim the word 'no', learning to claim the space around her, learning that a smile is not always the best defense.

When the day was over I was saying my goodbyes particularly to those I know well. Then I saw her waiting, 'May I tell you what happened to me?'

I braced myself, she was so young, so pretty, so eager to please. Me, I'm losing the capacity to take the body blow of an abuse report and stagger back to concious action. "I met this guy at school. I thought he wanted to be mates. I wanted a friend to hang out with so I said I would hang out with him. Then he started texting me awful things. Dirty things. He was mad at me, he wanted to do things to me. When I saw what he was texting I couldn't show my mother. She doesn't use words like those. Those words would have upset her. So one day when I was walking home I saw a police officer, I asked him if I could ask him a question. He said that I could and then I showed him those messages. He got really upset and told me that I'd done the right thing. That boy doesn't bother me anymore, I think he's a bit afraid of me.'

I stood there with my mouth hanging open. I wanted to embrace her and hold her safe for a long time. It's a wrong thought, but was my thought. But then SHE DOESN'T NEED TO BE PROTECTED, she can do it herself.

I've been waiting for the sun to come out the other side of abuse.

Well, it just did.

Thursday, November 05, 2009

Butterflies Are...

It was nice to see so many friendly faces. Amanda came running down the hall to greet me with a huge smile. We chatted excitedly. She's a lovely gentle woman who walks with accomplishment and pride in the life she has crafted for herself. She and the other Amanda, on of the group's facilitators, and I have known each other for a very long time.

I was a little nervous because I'd done this workshop a lot and when I raised the concern that they'd all been through the abuse prevention workshop several times, I was told that many new people were attending and that the one's with more experience would sit back and enjoy watching new poeple learn.

Which is what happened. There was a real attmosphere of welcome and grace from the 'old timers' as the new folks got up and did roles plays. I'm amazed at the maturity of some self advocate groups, how well they support each other. But then, it worked the other way too.

One of the older folks, who had taken the course a number of times got up and had difficulty briefly with something, a young girl - half the woman's age - saw the situation and before I could react, she stepped up and said, 'I'll help you.'

She didn't expect the staff in the room to be the solution. She didn't wait for others to take responsiblity. She didn't look the other way. I sat there quietly impressed. I thanked her for her help when she was done and she said, 'Sometimes it's best when it's free.'

There's a whole book to be written about that!

Wednesday, November 04, 2009


He was with his Mom and Dad. I noticed him because as soon as I came out of the hallway, he let out a yelp. We had had to take the industrial lift to the second floor of a Tesco Extra because the only customer one had broken down. We wended our way through the back stage of Tesco where we met workers who hauled and lifted, moved and arranged, sorted and priced. It's a whole 'nother world back there, and a friendly one at that.

After exiting the elevator we headed through some swinging doors, turned by a display of pink bras that were made for breasts of enormous proportions, and suddenly an exited sound erupted from someone. I looked and saw him, he was in a wheelchair being pushed by his Dad, his mother was looking at socks. And looking at socks like it was an incredibly serious matter too! He would be called 'significantly disabled' or 'multihandicapped' but even so he recognized that there was someone else in a wheelchair and he was excited.

I waved to him and said, 'I get excited when I see other people in wheelchairs too.' He nodded, knowing. I said, 'It feels less lonely.' Again he let out a yelp. This guy understood and was enjoying our conversation. I say conversation even though he said nothing in words. He said much in tone, and his eyes expressed volumes and his smile, well, it was huge.

We said goodbye and he made a couple of noises which I took to be a 'wish you well'. I never saw another person in the store in a wheelchair but I carried him in my mind because, he's right' it is a little less lonely ... when there are at least two.

Tuesday, November 03, 2009


Yesterday morning I was groggy from the deep shock that time changes are becoming to my system. I sat in my wheelchair in the hallway of a nice hotel waiting for Joe to bring out the footrests for the wheelchair. We were on our way to a lovely breakfast buffet which would begin a day off that we'd planned simply to adjust. A woman of about my age was vacuuming the hallway, her accent was warm with spices when she stopped to ask me if she could assist with the door at the end of the hallway. I thanked her and told her that I was waiting for my friend to bring the footrests. She smiled, nicely, and went back to vaccuuming an already clean rug.

Just as Joe was attaching the footrests to my chair I saw her bend down, grab the handle of the large industrial vaccuum and pick it up. She carried it several feet down the hallway and then gently set it down. Her face looked tired, worn. Her hands, I noticed when passing by, were hard and looked sore. This was a woman who carried more than a vaccuum, she clearly carried the responsibility for other people in other hallways. She clearly worked hard to do what she needed to do for those who needed her to do what she did.

As Joe and I moved towards the door she set down the vaccuum and came, unbidden, unasked, to open the door for us. I thanked her again, she smiled back, and thus our day began. Over breakfast we mapped out the day which included going to the Imperial War Museum in downtown London.

We turned a corner and were suddenly driving along the river Thames. The trees were raining golden leaves that were mysteriously lit, given the dark slate of the sky. It was beautiful, relaxing and I swear the air smelled of Agatha Christie and Christopher Fowler. As we drove, my wheelchair tucked up safely in the boot of the car, I thought about the woman in the hallway. I wondered if she ever got days where she could just pamper herself, where her only concern was catching all of the view, where no one expected anything from her.

I saw her again when we returned, hours and hours later. She was down on her knees shining something that was already shiny. She saw us and sat up, stretching her back as if it was hurting, and welcomed us back to the hotel. There was a grace about her. In the lines of her face were fatigue, maybe loss, but certainly not bitterness.

Sitting in my wheelchair in a room made lovely by other's work, I feel something settle gently on my shoulders. Perspective.

Monday, November 02, 2009

An Author Bewitches

Sometimes my email can be frightening. As an example, I openned my email to find that the Wicked Witch had paid me a late Hallowe'en visit. But no matter how much she tries, I'm afraid I'm just not tempted by Apple. Guess that means I'm safe for now.

The other piece of email I recieved was from Patricia Wood, the author of 'The Lottery' which readers know is next in line for Rolling Around in My Head's book club. A lot of you have signed up and I'd like to formally encourage a lot more of you to consider doing so. You've got until January to read the book so it shouldn't have to be a hurried read.

Wondering why I'm giving an unprecidented 'second call' to the book club? Well, it turns out, that Patricia has agreed to come here and write a few paragraphs about the book and her depiction of Perry the main character. I was struck, when reading the book, about how honestly she presented the story. I told Ms Wood this and she wrote to me with real passion about people with disabilities in literature. It's something not to miss.

Apparently one of you, dear and gentle readers, sent the link to Ms Wood from Rolling Around in My Head and thus a connection was made. I truly thank whoever it was for thinking of contacting the author herself. If you remember we were graced by Mary Doria Russell in our discussion of Thread of Grace. I was thrilled then, I'm thrilled again now.

Back to regular blogs tomorrow where I'll answer the question, 'What does driving along the Thames have to do with vacuuming a hallway?'

Ta Rah.

Sunday, November 01, 2009

Photo Op

We arrived at the hotel without a single story to tell. Hallelujah!

I waited in the lobby, just off the registration desk, while Joe got a porter and the two of them moved the luggage from the car to the room. I knew if I got into the room, I'd be in it for the night. Instead I waited because I really did want to go to the bar and get a cup of tea. A few feet from me were a bunch of couches set up for people to lounge about in. They were taken up by a family with three children, a boy of 10, a girl maybe 8, and a little one - a boy of about 2. The girl was dressed up as a witch, neither boy was in costume.

They were laughing and having fun, I like the sound of kids having fun so it doesn't disturb me in the way it obviously was disturbing others waiting at the desk for various bits of assistance. I noticed the oldest boy most because he was running all over the lobby, his sister occasionally half heartedly chased him. At one point I saw him take out a camera and shoot a picture. He was up a small set of stairs and he looked at the picture and laughed. He called his sister over and she looked at the picture, giggled and then looked straight at me. Way to announce that you've just taken a candid photograph of a fat guy in a wheelchair.

Father, suspicious at their sudden silence and consipiratorial manner, surprised them and took the camera, he looked at the picture and then harshly at his son. 'What on earth do you think you are doing?' Father glanced at me, saw that I knew what was going on, grabbed his son's arm and marched him over to me. 'I hope you won't mind telling my son how it makes you feel when people point you out or make fun of you.'

A thousand thoughts went through my head. I really didn't want to take the responsibility to parent this kid - even though I judge parenting everytime I'm out, people without kids are the best parents. I took a breath and looked this handsome little boy in the eye.

'Your father thinks I'm going to tell you how you hurt my feelings. Well, let me tell you, you didn't. You don't have that kind of power over me. What you think of me doesn't matter one little bit to me. What you've got to worry about is what I think of you. You see the moment you took that picture to make fun of me, I put you in the category of 'person not worth knowing'. I expect less from you than I did before. You know when I saw you playing with your sister and your brother, I thought 'What a great kid.' Now, I just think you a a mean spirited person not worth knowing or bothering about. Here's something else, everyone else who saw you do that, thought the same. You became less in their minds. You knew it was wrong before your father came and took the camera from you, now you expect less of yourself.'

His eyes started to fill with tears, he began to apologize. I wasn't in the mood, 'I said, the best apology is change. Just don't do it again. Instead of making fun of someone else, discover sources of fun within yourself. Your life will be richer.'

Father led him away. I call out, 'Erase the picture will you?' Father nodded but didn't turn back. There was sudden quiet from that corner of the hotel.

Joe came back and saw the aura and said, 'Oh, no, we didn't make the day did we?'

'Yes, we did,' I said.