Tuesday, November 30, 2010

Quick Announcement

Rolling Around In My Head has made it to the finals in two of the upcoming Canadian Weblog Awards. The blog is up for the Health and Wellness Award and the Social Justice Award. This award is different in that it is a juried award and therefore not decided by popular vote. I am very honoured to have been nominated and thrilled to make it to the final five. Will wait with anticipation to see the results.

I'd like to congratulate the other blogs nominated in these two categories and all the others as well. Blogging is clearly alive and well in Canada. I'd like to mention particularly Belinda nominated in the Faith category for her blog, Whatever He Says and Shannon nominated for the Crafting category.

So, here we go again!

A Tale of Two Citizens

I could see she was annoyed as soon as we came in the door. The elevator was not working and she was simply standing there leaning up against a window, bitching. In front of her was an elderly woman in a manual wheelchair. Seems the young woman leaning against the window, bitching, was her assistant. Seems the young woman, bitching, didn't want to go to the Bay, didn't want to go out into the cold, didn't want to go shopping and here they were stuck because the elevator was broken down. The young, ahem, lady, bitching, was speaking loudly - letting everyone know what a burden it was to be PAID TO provide care for this elderly disabled woman. The woman sat in her chair mortified. Upset the elevator was broken down and upset that her young assistant was constantly bitching about everything. She wasn't having a good day.

The same day, an hour later ...

I couldn't get by. He, too, was in a manual wheelchair and the young woman assisting him was bent over in a position that looked uncomfortable. She was holding his wallet open. He was taking bills out, one at at time, as if they were heavy, and placing them on the counter. Done with bills, she unzipped the change pocket on the wallet and he slowly pulled out coins. The line up grew. I was simply not inconvenienced, I'm old enough to know that there truly is enough time for me to quietly let another person live in dignity. Some further back were growing restless. The woman helping him, looked up, saw the line, then said to him, loud enough for all of us to hear, 'Don't worry about the people behind you, they all understand that one day they'll need more time too.' She said it calmly but firmly. The restlessness settled down immediately.

A reflection ...

I'm often asked how we 'make community' for people with disabilities. I used to be very puzzled by this question, not knowing quite how to answer. But more recently I've been answering this question in a way that surprised even me the first time it came out of my mouth. 'We make community every time we go into the community.' Every time a care provider leaves a group home, a nursing home, a person's home, they act as models for how others should react to and with people with disabilities. I notice that people notice staff behaviour. I notice that those who are a bit thrown by someone's disability often look to the care provider for guidance and reassurance that they are doing it right.

We need to do it right.

Most agencies in Canada have, within their name, the word 'community'. This should mean something. It means that they understand that thousands upon thousands of times each day as someone is supported to access their neighbourhoods, 'community' is being taught. Each and every staff needs to understand that their role is twofold. First, and primarily, they are there to provide assistance and support. Second, and equally importantly, they are there to demonstrate what respectful interaction looks like.

Let's be honest, disability throws some people into a panic. They don't know what to say, how to say it and they are so concerned about offending that they become, and this is either odd or ironic (Shannon please help), offensive. Good staff will know how to intervene in ways that instruct without seeming instructive, support without seeming controlling. It's a tough balancing act but its important to talk about, to think about.

Those two women, while working, taught.

One taught that disability was a burden.

One taught that disability was a natural part of the human condition.

One taught exclusion and superiority.

One taught inclusion and humility.

One needed firing.

One needed hiring ... to teach ... all of us about the importance of the work. That the legacy left behind is more than a good memory of a fine time out, it's also a community that knows better ... next time round.

Monday, November 29, 2010

love now




I was sitting in the theatre, we'd arrived way too early, waiting for Joe to come back with hot tea. The ride down had been very, very cold and we both wanted something hot. The theatre doesn't sell tea but they allow it to be brought in. There is a Starbucks close by and Joe had headed off to get some for us. I relaxed in the dimness of the theatre and listened to the music they piped in. Most of it was pop, most of the songs were about l'amore. The lyrics, as I listened to them out of sheer boredom, were really crappy. Well, maybe, creepy is a better word. There were songs about wanting to stay up all night to watch someone breathe. Another about wanting to lie with someone forever in bed. It seemed people weren't in love but clinically obsessed.

I know it's not romantic but I thought, 'Don't these people have jobs?'

It's just that I'm older I guess, and maybe when you are older love means different things. I sat there in the theatre and I thought of love now.

Love is when you begin a flicker of a smile because you know exactly, without possibility of error, what someone else is going to say before they even start.

Love is when you both play the same practical joke on each other for year after year and find it gets funnier and funnier each time.

Love is when you lose your last name in context of your other relationships, mine, for years has been andjoe.

Love is when looking through the crowd you spot someone, not by their clothes or their hair or their face but simply by how they move in the world.

Love is when you decide that there is only one person in the world that you want to tell about something good that happened that day.

Love is when you can sit at the computer while someone does a crossword puzzle and be quiet for a long time but feel like a conversation happened.

Love is when you both see the same thing at the same time and just have to glance at each other to communicate everything that needs to be said.

Love is when you see kids tongue kissing and realize that the only public display of affection you need is in how you look at and speak with each other.

Love is when you sit alone in the theatre waiting for a cup of tea to arrive and when it gets there you know it will be exactly what you want, even though you never said.

I leave the creepy night watching, every breath you take stalkerdom, to the song writers. I'll keep the kind of love that started with heavy breathing entered the phase of heavy lifting and finally got to heavenly partnership. When Joe arrived with the hot tea, I noticed again how handsome he looked in his new coat - I considered staying up later ... but not to watch him breathe.

Sunday, November 28, 2010


Hi, I've decided to publish an email that I sent to staff at Vita yesterday, after getting permission to do so of course. As a preface, Vita has an annual fundraiser, a cook off, to raise money for United Way. In this fundraiser, people bid to be judges or to be sous chefs ... the bids go surprisingly high as people all over the agency throw their hat in the ring and then people bid to see them in the role. This year something very cool happened and I wanted to reflect on it with the staff. After having done so, I felt that I'd like to share it here with you all. The 'Rights Group' refered to is the self advocate group within Vita. So now the preliminaries are done and with only slight modifications ...

To All Vita Staff and Members

Sometimes I feel very much the ‘old man’ at events within Vita. Such was my feeling when at the cook off yesterday. I looked around at all the staff members there and, of course, at the competitor’s table, and saw such young faces. As Carole and I were pulling out fruits as diverse as pineapple and kiwi and vegetables ranging from snap peas to red cabbage, as we tried to figure out what to do with the orange, I tried to focus on the task at hand. And I did. But even so, I was having to process something entirely different – a process that has taken me until now to both understand and to appreciate. Once I understood, I had to get out of a warm bed to write it down immediately.

When I began working in this field the term ‘community living’ had never been used in reference to people with disabilities. There were few community options, the primary and preferred option was institutionalization. It was during my first job at Glendale, a small facility in Victoria, that I first heard staff talking about community group homes and community day programmes. They had a mocking tone, the idea insulted them. They saw people with disabilities not as people to be included but as a kind of sub-human species that needed to be kept separate from the larger community. No one feared the eventual closure of facilities back then, all were secure in the fact that the community would come to its right mind and those few that lived freely would one day walk the land of the long corridor.

During those days the gulf between the lives lived by people with disabilities and the lives lived by their care providers was enormous. The hierarchy in place was one wherein everyone knew their place in the scheme of things. We, the staff were valued and valuable – they the members were valueless and vulnerable. The interactions were interesting, our contact was one of giving instructions, giving commands, giving criticism, giving opinion. It was in no way reciprocal.

A few years later, finally working in a community setting, things had not much changed. Oh, the setting had changed. Now our service was offered in a neighbourhood not in a facility, but that was a cosmetic change. It was like the ward was picked up, transformed in shape and then set down randomly in cities and towns – it looked different, but the relationship between individuals with disabilities and their staff had not really changed. The gulf was huge. Immense.

Over the years my career grew and changed and suddenly I was working and consulting in agencies all over the North American continent. What I saw, I didn’t really even question, staff were staff, clients were clients (the term ‘member’ would never have been used then). Until one day. I was speaking at a conference in San Francisco. One afternoon Joe and I slipped away and were in Golden Gate park strolling around and chatting. I saw a group of people with disabilities tied together – one wrist tied to another’s wrist – and walking through the park, following along behind two staff. At one point the staff tied the first in the group to a water fountain and left the group standing like cattle, staring vacantly making themselves absent from the world and the experience of degradation. The staff, unaware of the horror of what they were doing, went and sat on a bench and had a smoke. I approached them and asked what was going on. They explained, proudly, that they were staff who worked with people with disabilities (that’s not the term they used but I will not write here the term they did use) and that they were on their break.

My understanding of hierarchy that day changed.

Hierarchy damages people.

It damages those at the bottom.

It damages those at the top.

Everyone gets hurt.

Years later I was asked to do a review of an agency. I had to rummage around through old and dusty files to find the report I wrote, but I have it. Here’s what I wrote: ‘The only true measure that an organization is growing is in the relationship between people with disabilities and the staff who provide them service. It should be that every year the power difference, the respect difference, the valuing difference between the two groups should diminish. Our contact with ‘people’ who have disabilities should change us, it should bring us closer to the understanding of the commonalities that exist despite differences. We should be changed by our experience, that change begins with a rejection of the hierarchy imposed on us by a society that does not value difference, a rejection of the power dynamics thrust upon us by roles created within systems, we should begin to see ourselves as those who support, not those who control. The hierarchy will never cease to exist but it can cease to influence our actions, we can do things that actively challenge the expectations we have of each other and of ourselves. If, at the end of every year, there is not a shift toward equality away from inequality, the organization has ceased to grow.’

The report wasn’t accepted by the agency, and though they paid me for the work, they were angered by that summation. Even so, I didn’t change it because I believe it. I believe that we in human services are in a field of endeavor where our own personal growth is part of the process, that we all need to be constantly changing and being changed by our interactions with each others and with those in our care. It is one of the hidden benefits of the ‘helping profession’ … the byproduct of ‘helping’ is, of course, ‘being helped’.

I believe that our Rights Group has had profound effect on us here at Vita. By asking us to change our language, from client to member they were asking for more than a semantic change, they were asking for real change. They chose a word of ‘belonging’ a word of ‘togetherness’ … they could have chosen from a thousand of other words, but they chose a word of inclusion, not a word of exclusion. In that single word they expressed a desire for us all to belong to an organization wherein respect was expected and inclusion wasn’t extraordinary. It was a lot to ask for. It was a lot to hope for. It was a change in language that asked for a change in attitude. The hierarchy within Vita was shaken the day that Manuela and the board accepted the request. An act of defiance from member to staff member to board member was undertaken, defiance against how all of human service is structured. I knew then, that we would all be different as a result of the fact that people with disabilities within our organization, our members, now, formally, had both voice and influence.

Then there we were at the cook off. I did not know until being there that one of the sous chefs and one of the judges that had won seats through an intense bidding war was a person with a disability, was a person in care, was a member. I did not know until that day that this year the cook off was different than last year. Our members didn’t sit and watch, our members participated equally in both judging and in cooking. Our members did this because of, and only because of, the action of Vita staff. Vita staff had supported them, voted for them – with money, in becoming full participants. You all are too young to really understand what a profound act, not of kindness but of revolution, the inclusion of members in a formerly ‘staff activity’ was. It was something simply done, not planned out, not manufactured. It was something that only occurs because of growth and change.

It was something that if described to me during my first employment at Glendale would have seemed like science fiction.

It was something that if described to me during my first work in a group home would have seemed like a pipe dream.

It was something that I thought I’d never see.

But I did.


I have always been proud to work here at Vita, but I left the cook off having lost the competition but having won something of incredible value. I take away with me, as I consult to other organizations an understanding that deep and profound change can happen. That organizations that choose to can grow and grow and grow. That the ‘idea’ of respect can take human form. That the ‘idea’ of equality can be demonstrated in spontaneous action. That the ‘idea’ of inclusion can be a matter of course.

So, as I peeled beets and chopped eggs, as I sliced peppers and shelled peas, I also allowed myself to experience what it's like to be in a world where difference is acknowledged and celebrated. It was an incredible feeling for me.

So … the ultimate point of this email …

thank you all from a tired old man.

Saturday, November 27, 2010

Black Friday

A tough way to start the day.

Angry at the whole human race.

We were a bit late getting out the door this morning as we were headed to a Vita fundraiser where I was competing against Domenic (another Vita employee) for the title 'Vita Chef 2010'. We'd had to get some spices, some pots and pans, and get ourselves out the door. We got to the elevator to find that one of the elevators, the big one, is down. That meant that by the time it got to us it was always full. Completely full. Of people, all of whom can walk. All of whom can fit in spaces where standing people can fit but sitting people can't.

Every elevator had room for us if we were both 'standees' but there was no room for 'sittees'. Everyone saw us, everyone looked through us, all pretended that it was completely natural to let elevator after elevator after elevator go by leaving a guy in a wheelchair with no options sitting just waiting. Finally Joe had to ride down get the superintended to shut down and elevator to come and get me. It was unneccessary. In a world where people cared about people, someone would have stepped off and gone the last few flights down the stairs or waited for the next elevator. They came regularly, they just came too full for a wheelchair.

So by the time I got to the competition, I was in foul temper. You shouldn't cook in a foul temper. As people arrived, staff and members of Vita, good cheer filled the room. I began working to cook an appetizer, a main course and a dessert in a couple of hours. Carole was my sous chef and Joe was allowed to assist with mobility stuff, going and getting things. Soon we were all chatting and having fun. Soon the warmth of caring people doing fun stuff together began to fill the room and pry open the door in my heart that I'd nailed shut in the morning. Suddenly, I found myself laughing.

I felt so much better on my way home, even though I was tired, even though I lost, even though all I wanted to do was curl up on the couch and drink hot chocolate, I felt so much better. It was nice to be reminded that people are simply people. Some are thoughtless, some are thoughtful, some know what to do when they see someone with a disability in need, some want to do something but don't know what ... people. And in fact, I like people.

So today Vita raised a money for United Way, had fun and cheered up a grumpy gus who was determined to have black friday stay black all day.

Friday, November 26, 2010

Being Me

"I'm not like you, you know."

Her voice takes me by surprise. I'm sitting on the bus going to work. We had stopped about fifteen minutes before to pick up an orange haired woman riding in a black manual chair. A chair not unlike my own. She sat comfortably in her chair as she was pushed up the ramp. The chair was secured, she was strapped in, and we were on our way, all very efficient.

It had been pleasant enough. I said, 'good morning'. She said, 'good morning'. The driver said, 'good morning'. It was very ... very ... Waltons. Then we were off again. I was pleased because the door had been left open while she was being secured into place and the bus had become cold. Once we were driving again, the heater began pouring heat down on us in the back. It was a cosy feeling.

The driver and I had chatted in a lively manner on the way to pick up the next passenger but he and I were both talked out and content to ride in quiet to the next stop. I was looking out the window, thinking about the day to come, the weekend to come, the holidays to come. All that stuff.

Then she spoke. 'I'm not like you, you know.'

I turned to her. She had one of those faces that looked like it would be soft to the touch. She smiled in that way you expect Grandmothers to smile while offering you cake. I didn't know what to say, 'so you aren't a fat and balding gay man? seemed somehow inappropriate.

I've been to school.

I studied psychology.

I learned, at great cost to my parents, how to say, in an interested fashion, 'oh?'

It's a skill.

A very useful skill.

Encouraged, without knowing that she had just fallen prey to hours of study and practice, she said, 'I just broke my foot.' She pointed down to her foot that was in one of those plastic contraptions that they use now instead of casts. I called it a cast but she informed me, pleased with the knowledge, that it was called a 'boot'. I looked at her confused. What was she saying, I said, 'Oh.'

Encouraged, I told you I was good at this, she said, 'I'll be up and walking again as soon as it's mended. I'm not like you.'

I didn't know what to say, 'good for you' seemed oddly wrong. Or, 'lucky you' seemed counter to what I believe. Or, 'I don't give a flying fuck' which was closer to the truth, seemed unduly harsh to a woman with an 'I'm giving you cake' smile.

So I said, wait for it, 'Oh.'

That seemed to satisfy her.

She's not like me.

Surprisingly, really, really surprisingly, I'm totally OK with that.

Thursday, November 25, 2010

Eggs Benediction

It happened because of eggs.

Well, because of eggs and because they have redesigned the store where I typically shop. On arrival home, Joe asked if I'd hop in the power chair and head over to the grocery store to pick up bread, eggs and milk. He had several trips up from the car to the apartment with luggage. If we timed it right, we'd both be done and in our housecoats around the same time. I eagerly agreed to go to the store. Using the power chair after almost a month of wheeling manually seemed such a luxury. My thumbs are calloused from the miles pushed and, now, occasionally I get arthritic twinges in the bones of my hand. It would be nice to be carried along easily. Too, I wanted to see all the Christmas preparations in the area.

I went out of my way over to Yonge Street and headed north. I was enjoying the fresh air after over eight hours cooped up in an airplane. It was nice to feel completely, utterly free. The stores didn't disappoint. Clever decorations were everywhere. Even the kinda funky, kinda sleazy sex shoppe around the corner had hung wreaths and mistletoe in interesting places. I was having fun.

Once in the store I headed over to get the eggs last, of course, as they needed to be on top of the bag. I'd also picked up several tins of beans as our traditional 'we're home' meal is beans on toast! It's as homey a meal as you will ever have. I went over to the eggs and then remembered that they had been moved with the store renovations. I went in search of them and found that they were now in a cooler. I'd have to open the door and reach down and back. I couldn't get my chair positioned properly.

I was going to have to ask for help. I looked around but there were no staff in the area. I pondered for a second and then noticed a woman as she walked past me. I called out, 'Excuse me ...' she turned speaking, which surprised me, 'No, really, I'm alright,' she said. I saw that she had been crying. She had a handkerchief in her hand crumpled and wet.

'Oh, no,' I said, immediately embarrassed that I had entered into her upset, 'I was just going to ask you to help me get some eggs.' She saw the situation and said quickly, 'Of course.'

She came over and picked up a dozen eggs, she opened the carton and looked in. One was cracked. She got another carton and these were all fine. She handed them to me. I started to thank her, she stopped me by gently putting her hand on my shoulder, 'I needed to be needed just then. You'll never know how grateful I will be to you.' Tears filled her eyes again and she was gone.

I felt like a really big moment had happened. A moment that I would never understand. Like I was a tool used by an unseen hand in a garden too huge to see close up. Odd how when I set out to help, I often don't and yet other times are ... well, other times.

Sometimes I don't know how to feel about asking for help.

Sometimes I do.

Wednesday, November 24, 2010

The Other Lunch

Our last day in London we went to Tesco for a bit of shopping and to have lunch. We sat right at the window and watched as people were streaming in and out of the store. Empty carts going in, laden carts going out. Anxious faces going in. Relieved faces coming out. The season was evident as brightly decorated rolls of Christmas paper peaked out of many baskets. It seemed that they were fighting a losing battle on the side of 'cheer'.

I heard a 'Whoop' that was loud enough to make it through the glass so I turned to see a mom pushing a cart with a little boy in it. He was riding in the cart as if it were some kind of cool skate board. He turned to grin at his mother and I saw that on the left side of his face he had serious scarring, the kind that happens from a severe burn of some kind. He wore his face carelessly in that moment because he grinned up as his mother, urging her to go faster. She grinned back, seeing both sides of his face but only one boy - sometimes parents move me to tears.

She began to run with the cart. There were signs all over the place urging parents not to let their children ride in carts, but these two paid them no mind. She was a trim fit woman, looked like the kind that ran marathons between working out at the gym and morning sit ups. She could really run. The cart hit a stone and veered off and the two of them screamed as she fought to right the cart and he used his body, clearly he was a skateboarder, to assist her in the struggle to get it right.

Disaster averted, the two of them laughed. He turned, impulsively and threw himself in her arms. It was a lovely moment.

To me.

But behind me an elderly couple was also watching.

They must have seen something different.

He said to her, 'It looks like he was caught in a fire.'

She said to him, 'That face will never be made normal.'

He said to her, 'Poor woman.'

She said to him, 'She will have to grieve every day for the rest of her life, if he'd have died, she'd probably be over it in a year or two.'

I looked again out the window as they were on their way. Her freshly hugged. Him urging her to run again.

The couple had gone back to their meals. They were busy feeding their bodies. They'd had an opportunity to feed their souls, but turned it down. It was wrong of me, I know, but I openly pitied them.

Monday, November 22, 2010


Right now ...

Exactly now ...

Typically on travels like this I write several blogs and stack them up, then there is no panic if the day doesn't allow writing time. This has happened often on this trip because the 'stacked up' are now 'used up' and what good timing it is because tomorrow we go home. So right now I'm in a hotel on a Sunday afternoon relaxing while Joe is reading trying to finish one novel so that he can start another on the plane tomorrow.

This has been a hugely busy trip. We never made it to a Marks and Spenser, a Waitrose or even an ASDA's. We never made it to a museum or any local landmarks. Two Saturdays were spent working and two Sundays were spent travelling. There's been little time for the usual stuff. But, that's OK - the trip flew by and now it's time to fly ourselves.

Much has happened on this trip.

I have been changed by some of the experiences.

I have learned about 'community' and have much I want to do in my home agency, Vita, and in my blogging world as a result of that learning.

But there is time for all of that ...


What with time changes and some immediate work that has to be done when I get home, I'm taking the next two days off from the blog.

I'll be back to you on Wednesday, maybe Thursday.

Thanks for coming along on the trip with me. Hope you enjoyed some of the experiences I had as we travelled.

If you think of me, wave towards the sky - I might just be winging over head.

Sunday, November 21, 2010

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'.

Saturday, November 20, 2010

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.

Friday, November 19, 2010

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.

Thursday, November 18, 2010

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.


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.

Wednesday, November 17, 2010


Diverse City Press is holding it's very first year end sale exclusively for Rolling Around in My Head readers. Visit the site for the following deals ... 20 percent off a book, 25 percent off for sales over 100 dollars. To get the deal just place your order, you'll find the email on the site, and quote the following code ... it's pretty obvious ... RAIMH ... and then you will receive the sale discount. This sale will be be on until the end of the year. Happy Shopping.

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.

Tuesday, November 16, 2010

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.


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.

Monday, November 15, 2010

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.

Sunday, November 14, 2010

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.

Saturday, November 13, 2010

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.

Friday, November 12, 2010

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.

Thursday, November 11, 2010

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

Wednesday, November 10, 2010


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.

Tuesday, November 09, 2010

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.

Monday, November 08, 2010

Hopelessly Devoted

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


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.


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

Sunday, November 07, 2010


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.


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.

Saturday, November 06, 2010


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.

Friday, November 05, 2010

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.

Thursday, November 04, 2010

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."


Every day.


Every way.


On those who pitch hate.

"Every day."

Wednesday, November 03, 2010


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.'


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.

Tuesday, November 02, 2010

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.

Monday, November 01, 2010

Lime Green


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.



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.