Rolling Around In My Head

DNA

2012-01-28T05:13:00.000-05:00

Joe's father, Joe, was a lovely man. Full of the love of life and with a generosity of spirit that was so natural to him that it had to be coded into his DNA. He had a harmonica, and could play. He loved to both tell a joke and hear a joke. He worked hard. He played hard. And, maybe most important of all, he loved his family. He was terrific around children and seemed to have a natural ability to know just what to do to make them laugh, just what to do to make them feel loved. A remarkable man.

Whenever he came to visit us, either in University when we were students, or to Toronto when we were first starting out, he'd look in our fridge and then go out and buy groceries for us. We didn't need him to do that, well maybe we did sometimes, but he did it because he wanted to, it made him happy. He liked to give in practical ways, love in concrete ways. I still remember him fondly. More than that, I remember him often. Probably because Joe is very much his son. Joe not only looks like his dad but he carries himself in a similar manner. Both easily moved to laughter. Both easily moved to generosity.

I think the thing that I learned from him that I value the most is the fact that it's possible to live a life in which you are remembered well and fondly. It's possible to set an example for how to simply 'be' in the world which will indelibly leave a mark on the heart of those you've touched. It's possible to be, in a way, immortal. I want this.

We don't actively think, when we are with the kids, about these things. Living in the past and living for the future are both dangerous things. Being in the present affects the past, because it becomes the past. Being in the the present affects the future because, in the present, direction is set. So, we try to be in the present as much as possible. This is particularly true when we are with Ruby and Sadie. It's so cool to simple be part of their life now - we get to become part of their past and be in on the development of the future. And we do this only, simply, by being with them.

Sadie, when she came out of day care and saw us in our car, pointed at us grinning saying 'Dough!' She doesn't watch the news so isn't familiar with Bennifer and Brangelinda and our penchant for combining names, she just naturally came up with 'Dough' as a combination of Dave and Joe. Her grin told us that she remembered the fun we've had in the past and that she anticipated more of the same. How nice. We went to one of those playland kind of places here in Ottawa and before even heading over to the games and the flashing lights she was up and into our arms for a huge Sadie hug.

On our way out of the grocery store, I stopped to buy some lottery tickets. Everyone needs a retirement plan after all. I got Ruby to pick the tickets. She had stayed back with me in the store while everyone else had gone to get the cars, it was cold and snowy. When the woman gave me the tickets she said, 'I hope you are lucky!' Ruby nodded, agreeing. I said to Ruby, 'But I'm already lucky, I get to know a girl named Ruby.' I thought the lottery ticket woman was going to melt when she saw Ruby get tears in her eyes. On the way out she put her hand on my arm and said, 'Is it OK if I remember you said that for a long time?'

I told her that if that was the only thing she remembered about me when she was all grown up, I'd be happy. Then the cars arrived and there was a swirl of activity. Ruby always rides with us when we are all together, Sadie still wants to be with Mom and Dad. Joe was loading the wheelchair into the trunk when Ruby piped up, she'd been thinking. 'I think I'll remember the wheelchair too, it's fun.'

Then we were all off to make the past and build the future. Just like Joe's Dad Joe did for us.

Superfast

2012-01-27T00:00:00.000-05:00

When Ruby found out we were going to see her in the morning she asked, 'Do we have to come to Toronto?' I told her, that we were coming to Ottawa. She asked if we were staying at their house, an odd question because we never do. I said we were going to be in a hotel. She's been in a lot of hotels with us so I reminded her, 'It's the hotel with the long hallway where you get to run superfast.' She knew immediately which hotel it was and got excited.

After all she likes to run superfast and she knows the hotel has a pool. So she asked, 'Wanna see me run superfast right now??' I asked her how I could see her because I was on the phone. She thought for a minute and said, 'You don't have to SEE me.'

Huh?

'I'll put the phone down hard so you can hear it, I'll run over there, and then I'll run back and pick up the phone and say, hi. And, AND, I'll run superfast both over there and back here.'

Without waiting, she dropped the phone, I heard running steps off into the distance and then all the way back, she picked up the phone and said, breathlessly, 'Hi, Dave.'

'Wow, that was really superfast,' I said, not knowing where she ran to and from but knowing that it must have been superfast any ways.

I struggled to stay on the phone for a few more minutes because I so wanted to get off the phone to tell Joe. So after we said goodbye, I told Joe about the superfast race.

We both agreed that's she's becoming the master of adaptability and accessibility, 'can't see me, who cares? We'll do it a different way!'

For the longest time I thought that Ruby with her penchant for spirituality and lovely discussions about God and his Kid was headed for the ministry.

Now, I'm hoping she's headed for a Ministry in the House of Commons. By gum, with her at the helm, adaptation and creativity will be the norm and accessibility will be the law.

Solutions (Two)

2012-01-26T00:00:00.000-05:00

We made the decision quickly. Without even much of a second thought. What with the International Day of Mourning and Memory, and all the posts regarding that day, there has been so much emotion expended. Along with that, I've been doing a literature search on people with intellectual disabilities as witnesses in the justice system. This is in preparation for doing an article demonstrating that Self Esteem, Sex Education and Abuse Prevention classes taught to people with disabilities give them the words with which to tell what has happened to them and the self esteem needed to fuel courage in making and allegation and in testifying. We've got strong data to show that this works.

But, my oh my, the research is a bit bleak. It was shortly after reading a study that showed that if you give a written account of testimony to one group, telling them that the witness had an intellectual disability and exactly the same written account to another group telling them that the witness had typical cognition (I don't remember the words they used) the group who had been told that the witness had a disability rated the witness as non-credible and the group who had read the same testimony believing it was a typical witness saw the testimony as credible. Incredible? Incredible. Anyway, much of the research is about that kind of thing. But that was the one that pushed me over the edge.

Yesterday, for my sake, and for the sake of you as readers, I wanted to lighten up a little bit here on Rolling Around in My Head. It's good to look at life straight on , but it's also good to see good. But that study had me sit back in my chair at my desk at work, pick up the phone and call Joe to say, 'I need to go see Ruby and Sadie. I need a hug from the kids.' Joe agreed instantaneously, and it was all set up. We go tomorrow night. I'm more delighted than you can imagine.

I have a tendency towards both depression and anxiety. Not a debilitating tendency but those twin demons can rob me of the ability to experience joy. Given that I work, so often, in the area of abuse - even though it's abuse prevention, life can get dark for me. Given too, that working on this paper has had me reading articles that are basically about how people with intellectual disabilities can be shut out of the justice system, not because of the disability they were born with but because of inability thrust upon them by forced ignorance and denied information. Imagine that a police office, already predisposed to see those with intellectual disabilities as incompetent, interviewing a woman who talks about how a man put his 'thingy' in her 'woo woo'. He will assume that that language is due to disability. He will not know that her disability was the cause for others to deny her the education from which she could have developed vocabulary. We've demonstrated that 'thingy' becomes 'penis' and 'woo woo' become 'vulva' in ONE TWO HOUR CLASS. We've demonstrated that passivity becomes assertion in ... Oops, I'm ranting.

Anyways, I'm halfway through the journal article now, I've got the data all done, I've got the literature review finished, I've got the introduction written. And through all that, I've managed to get myself right, royally, rueful. So, I'm going to get a Ruby Hug and a Sadie Hug and probably a Mike and Marissa Hug too. We'll spend the day with kids in a noisy kid place and then a day in a museum and then we'll come home. Monday I'll finish. I'll have pushed off all the darkness and be ready to write about solutions not problems ... which is the frame of mind I need to be in to write the next part of what needs to be written. The ... OK that's the problem ... ta, da, here's a solution. I shouldn't be doing this, I don't have time to do this, but I have to do this ... does that make sense?

So tomorrow it's video-conference ... hi to you folks up in the North, if anyone reads this let me know during the question section ... and then it's off to Ottawa. I hope to have a Ruby and Sadie stories on the blog on Saturday and Sunday.

FYI

2012-01-25T16:11:00.004-05:00

There has been a bit of controversy going on over at 'The Canadian Weblog Awards' and you might want to pop over there to see what's going on. For those of you who might be confused. In Canada we have two very different blog awards. The Canadian Blog Awards, where you went to vote for me and where I won Best Personal Blog (thank you) is one where readers vote. 'The Canadian Weblog Awards' are a juried award system where readers votes aren't part of the process. Janet, who might be the Janet who comments here sometimes, raised the point that all the bloggers who write about physical and cognitive disabilities have been shut out in the short list and thus will not win an award. The two categories being discussed are 'Ecology and Social Justice' and 'Health and Wellness'.

She suggests that there is bias amongst the judges in that no disabled blogger made the cut. Schmutzie, the organizer, has brought Janet's post forward to discuss and this has resulted in interesting comments and discussion. If you go there, scroll down the suggested list of new blog categories to the discussion of Janet's comment and then go back up to the one that's on top currently. There you will find that Schmutzie has asked for an appropriate name for the new disability category. Help her out if you can.

I commented as a blogger who did not make the short list in either category - but not so much about that as about the 'health and wellness' category as an inappropriate place for the 'disability' bloggers to be placed. Anyways, I'd like to hear your point of view. Is Janet right? Do you think there was bias in the judging. It's hard for me to give an opinion because I'm not sure how I could separte not making the cut from my opinion. I think I could give a fair opinion but no matter what I do I'll be seen as being either 'gracious' or 'bitter' ... so, I'm going to leave the opinion stating to those of you interested enough in these sorts of things.

Today's post follow ...

Right Now

2012-01-25T00:00:00.000-05:00

Right now I'm eating left over pizza. Double sauce, double cheeze, double hot peppers and pineapple - it's good even cold. I love cold pizza.

Right now I'm flipping through an Italian translation of one of my books, it came out a while ago but I just recieved a copy of it now. I can't read a single word in it but it's very, very cool.

Right now I'm writing an email to a person with whom I had a fight several years ago and with whom bonds have been reestablished. It's a funny, silly email, the kind that you send to people just for fun.

Right now I'm listening to a message on the phone from Ruby. Haven't seen her for awhile so I decided to play it back and giggle when she giggles trying to tell a joke.

Right now I'm listening to the kettle come to boil for a cup of tea. I haven't had a cup for several hours and I'm at the point of desperately needing one.

Right now I'm planning what to have for supper. We both feel like comfort food, not pizza comfort, home cooked comfort so we've just decided on one of our favourites.

Right now I'm thinking about this year's vacation. We've all decided to go somewhere new this year and I'm about to Mapquest the drive to Moncton.

Right now I'm extremely pleased to have a Canadian Blog Award for Best Personal Blog in 2011 on my Blog. I shouldn't have lusted for it, but I did and I'm happy to have readers that bothered to vote!

Right now I'm sitting in my housecoat in my wheelchair at the computer writing my blog. It's a simple blog, purposely so, after all the heavy posts from the last few weeks, it feels right to feel alright.

Right now I'm thinking that a nap might be good. I think I might just let darkness settle snug around us while I'm snuggly snoring in my bed.

Right now is right now and I intend to live now right.

A Public Letter

2012-01-24T00:00:00.000-05:00

To: Still in Hiding:

I do not know if what I'm about to do will be upsetting to you. I want to highlight your comment regarding the 'She Never Knew She Never Knew' video by making it part of a blog post. I usually don't do this without permission, however, I have no way to reach you. I finally decided that your comment was bravely made in a public space, therefore, it was intended to be read. I hope, I really hope, that doing this is OK with you.

To Blog Readers:

For those who did not read the comment, I am reproducing it here, completely without edits:

I was angry at you when I saw that video for the first time. I didn't like to be made to feel feelings that I've stuffed away. I did not live in an institution, I lived with something equally damaging. I lived with being my mother's tragedy and my father's disappointment. They didn't want a child on wheels. They never took me out, admitted to only a few of my existance. I was home schooled, the call it now, but the experiece was rather like getting education in a prison cell. If I left the house, it was after dark, and we'd drive long distances to be in placed where we'd meet no one we knew. I never knew about girlfriends, and gossiping, and dances, and playing with others. The difference between Arlene and myself? I knew I never knew. And it's left it's mark. I can't go out without a sense of shame. People's stares hurt me to the core, more than they should, because I know that my parents fled from them. Mr. Hingsberger, I happened upon your blog while looking for something else. I've stayed ever since. I've never commented. But I want you to know that you have introduced me to a world of pride and self respect as a person with a disability. I don't know why you write this blog, I can sometimes feel the cost behind the words. But I want you to know that for me, here in the rest of the life I have, you have made a difference. Thank you. On the 23rd, I will hold a small funeral for my childhood. Then, I hope, I can say goodbye to all that and begin to work on beginning. I shall play this song as my prayer for the childhood, for the life, I lost. Thank you Dana and Miles. Thank you for telling the story of many of us.

To: Still in Hiding:

I thought of you all day yesterday. The image of someone having a funeral for their childhood registers in my mind and heart as a tremendous act of courage. Saying 'goodbye' and 'farewell' to one's past is one thing, but to say 'rest in peace' to memories is quite another. I have tried, many times, to bid adieu to hurtful moments, but they never listened. I had said 'Goodbye' but they had not listened. They trotted along behind me, weighing me down at some moments, catching me off guard at others. It wasn't until I did, as you have now done, allowed them to rest, to have their own peace that I began to feel free of them. I had to mourn their place in my life, I had to grieve the loss of the anger with which I had held them so tight, an anger that consumed me. The hurt was gone, but my limbs had grown weary from having carried them so far along the way. I hadn't thought of this process as a 'funeral' but I'm guessing that's exactly what it was. So, though you don't know me. I was there with you, several times yesterday, in spirit. I believe that many readers here, I have generous hearted readers, were with you too.

What I wanted to say to you, however, was that life is not to be lived in hiding. I know I am presumptuous to say this to you. And I may well be wrong. But, I feel this deep need to say what I have to say. Many, many writers in the disability community have written that the gay community and the disabled community are twin communities. That we are born into families much different than ourselves. Some of us are born in to families who accept our difference with love, others, deep in their hearts, would wish us different if they could. So, even nestled into our mother's arm's, even sitting on our father's laps, we are different. Part of the process of growing into pride, which is every bit as important as growing into adulthood (and adulthood may not be truly possible without it) is the 'coming out' process. Not 'coming out' to the world. No, that comes later, much later. We begin by coming out to ourselves. We begin by accepting who we are and what we are and how we are. We begin by rejecting the definitions that others put on our lives and begin for forge our own. We begin by acknowledging our difference in the face of prejudice, our difference in the face of bigotry, our difference in the face of bias. We lose the language of self delusion, we no longer say, 'I don't consider myself to have a disability.' or 'I only focus on my abilities' or 'I am just like everyone else'. Instead we begin to speak to ourselves of ourselves as people with disabilities - as members of a community, as part of a movement, as having a place to belong and a perspective to offer. We began seeing who we are as entwined with what we are and how we are and even begin to see then ... the biggest miracle ... why we are.

You signed off your comment on the blog with 'Still In Hiding' but, oh no, you aren't. By writing that comment, by peeking into a disability blog and by staying and by reading, the door was being slowly swung open. You have smelled fresh air ... welcome. I am honoured that you have come here to Rolling Around in My Head. I'd recommend, again presumptuous, for you to read fellow comment makers and follow links back to their own blogs. You will find here readers who are parents, who proudly love their kids. You will find here care providers, who proudly serve and wish to serve well. But, most importantly for you, you will find others with disabilities here. All of whom have made a journey. All of whom have decided to be publicly, and sometimes even wonderfully outrageously, proud.

I would love to hear from you again, sometime, even on my personal email, which you will find over there under the picture of Joe and I, or here amongst this tiny, little, loving community.

I Will Never Forget: Guest Post for the International Day of Mourning and Memory

2012-01-23T19:00:00.000-05:00

I received an email from a woman I met many years ago when we were both much, much, younger. She wrote this and sent it to me, kind of a personal reflection on the International Day of Mourning and Memory. I felt that it was too powerful and too important a story for my eyes only. I asked her for her permission to put it up here on my blog and she has graciously allowed me to do so. I am very, very, touched by how people have taken this day so seriously and spent time thinking, remembering and reflecting.

I Will Never Forget

Susan Ludwig-Goharriz

It was almost my first job after graduating from University as a nurse. There had been an aggressive campaign to recruit new graduates to the State School. The School was like a small community – at one time housing thousands of individuals with developmental disability in a cluster of “cottages.” In the same community was a hospital – used to care for the most medically fragile of those individuals as well as any individual from the cottages who became ill. I would be a staff nurse in this hospital.

The school was supposed to be “progressive” in its care model. It was an attempt to offer “institutional” care in the most “home like” surroundings. The hospital was supposed to be a place where care providers were experts in caring for the various specific needs of the community members.

The reality was starkly different from the model that was touted to the country that was still embracing the Kennedy administration’s attempts to give better care to the disabled. It was a country that was still reeling in shock at the ending of that presidential life . . . but still trusting in the capacity of institutions to make decisions about those who were deemed unable to make their own decisions.

Our new patient was admitted from one of the cottages with a serious ear infection. Green drainage ran down his neck – so contagious that he had two infected fingers where he had scratched at the itching drainage and the hang-nails on his fingers became angry red and swollen. He was among strangers in the hospital – and the staff genuinely tried to do what they could to support him in his new environment.

The doctors on the floor were not competent to practice in the community. They had not passed their State Board exams and so their practice was restricted to institutions. My strongest recollection of them was when they reported me to my head nurse because I had refused to stand when they entered the nursing station. Their arrogance was only surpassed by their ignorance.

The plan of care for my new patient? Well, there was virtually no plan of care. They prescribed topical antibiotics for the sores on his fingers – and oral antibiotics for the ear infection. There were no lab tests ordered to be sure that the antibiotics they ordered were appropriate to the infection – just give the oral medications and don’t question our judgment. The infection showed no sign of abating even after several days on the prescribed regimen.

One afternoon, I arrived for my shift. This young man was having seizures. He wasn’t having just one seizure – but one followed by another. The seizure activity was such that it was driving his temperature up by the hour. Our head nurse (experienced and kindly but not willing to challenge the medical system) was trying everything she could to control his fever, but the seizures continued – one after the other for the entire shift.

He appeared to be beyond understanding what was happening to him. During the few moments between seizures he seemed to be dazed. I knew he was in pain – but no medication was allowed to relieve his pain. The fingers continued to be angry red – his ear continued to discharge its steady stream of infection. The doctors refused to discuss any alternative treatment – there were no IV’s to replenish his fluids or electrolytes. There was no attempt to sedate him in the hopes that his seizures would diminish. At the time, it was suggested that administering general anaesthesia would make the seizures pause for a long enough time to bring his fever down. The physicians smugly declined to offer any treatment that would have helped this young man.

The next day I arrived for my shift and this patient’s bed was empty. He had lived almost 36 hours with one seizure after another. Finally, his fever was so high that his vital organs shut down. One of the doctors visited the floor later that evening – and with a certain amount of smugness advised me that they had immediately contacted the family of this man and requested permission to have his body cremated. The family had given permission and the doctors had hastened to follow the family’s wishes thereby sidestepping an autopsy.

My mind goes back to him often. I see him as the head nurse was desperately trying to bring his temperature down – and how everything we tried had failed. I was filled with the rage that comes from feeling totally helpless in the face of a system that forgets. It forgets the value of the individual and his quality of life.

Day of Mourning and Memory: YouTube Update

2012-01-23T12:20:00.002-05:00

This was just sent to me, done by a student named Kristine Snider Thank you so much Kristine, I loved it! For those who don't know some People First groups in Canada use a yellow and black ribbon as a symbol of remembrance - this is what's referred to in the video.

Hello again, I am feeling very scattered because of other duties and expectations right now. I'd like, however, to have a resource of all blogs published today about this day. I've read one written by Andrea which has a tremendous amount of information and Amanda's comment on one of the posts here which she has compiled into a blog post of her own. I've also been and read Lene's post of the day, no surprise here she won a Canadian Blog Award as a writer. I also found on Google a round up of links by Lounalune . I've just been sent another post by reader Myr for inclusion here. And another arrived this morning Gina @ InkyEd! a powerful meditation. I missed one from yesterday, from Kristine's fellow student at Loyalist, life with the belly monster. There are probably more, please put them in the comment section and I'll move them up here where it's easier for people to find them.

Cousin Mattie: The International Day of Mourning and Memory

2012-01-23T00:00:00.000-05:00

Cousin Mattie scared me, not because of who she was, but because of what she represented. By the time that the whispers of her existence reached me, I knew I was different. I didn't have a name for it and it would be some blessed years before I first heard 'faggot' and 'gearbox' and 'homo'. The naming of my difference, apparently, was done by those who hated it. All I knew was that deep down inside me there was housed difference. It doesn't take children long to learn that difference is to be feared, to be beaten and to be bullied. I see all these advertisements about bullying on television and, though I applaud the effort and intent, I always feel that the message is always written by those who once bullied never by those who experienced it. Difference, at an early age, came to mean separate. That, I had learned before the whispers of Cousin Mattie. That, I hed learned early and well. I began building an inner home of safety with tiny baby fingers in which Lego blocks looked huge.

Though I couldn't name my difference, I could fear it. I feared what it meant, not as a descriptor but as a predictor. I knew that this nameless difference would mean loss and hatred and even violence. Cousin Mattie had a nameless difference too. She was spoken about in whispers. She was part of a conversation that adults had with adults. Cousin Mattie was only spoken about when we, children, were sent outside to play. I never saw Cousin Mattie. I never met her. Even so, her absence made her very present at family events. There was someone who's name had the power to silence conversation, who's name had the power to freeze adults to the spot, who's name had the ultimate power of shaming. Cousin Mattie lived elsewhere but her hand manage to grip the soul of my family.

As I grew older and brasher, I learned only that Cousin Mattie was 'slow'. I don't think the 'r word' was used to describe her. When it became clear to me that Cousin Mattie had been cast out for her difference, the realization rang a bell in me that has still not stopped sounding. Selfishly, I understood her as a warning, not as a person. I thought, then, little of where she was or what was happening to her, I thought only of me - and my difference. I looked at the faces of Aunts and Uncles, of Grandmothers and Grandfathers and, of course, Parents ... and knew, deep down, that I was already cast away. That I was loved, conditionally, that I was loved for the 'David worn' for public view, not the 'David lived' in private.

The existence of institutions that lock away the different was purportedly done by a society that willed to care for the 'less fortunate' - a term that itself reeks of prejudicial thinking, every time someone uses that term they stand a little taller knowing that fortune blessed them, that life gave them a prize and that God grace fell upon them. It's amazing how privilege is always believed to be deserved. Those institutions, where Cousin Mattie lived, to me were never about care, they stood as monuments to the tyranny of the norm. They stood as reminders to all that in a moment, in an instant, freedom and liberty and justice can cease to exist, replaced with policies and procedures and programmes. I didn't know where the 'away' was where Cousin Mattie lived, but I didn't need to know. What part of 'away' is hard to understand.

I still don't know where she lived and when she died. I do not know where she was buried. I do not know how she lived or how she died. She never knew that I never knew. Worse, she never knew that I cared to know. The fact of institutionalization, for it is still a fact, is a societal travesty that continues unrecognized. It is unrecognized for the damage that it did, not only to the lives of those with disabilities, but also to the large social psyche of humanity. We live in a society wherein, all over the world, thousand upon thousands of fellow humans, fellow citizens are caged. We live in a society where barbarity is called compassion and wherein the propaganda against the difference of disability goes unchallenged by all but those who know and experience disability. The testimony of those with disabilities as to our human status is seen as 'cute' and maybe 'charming' and maybe even 'inspirational' but it's never accepted as really true. The testimony of parents who embrace and love their kids with disabilities, who see them grow and see them learn is dismissed as denial and self delusion.

Cousin Mattie lived a life in whispers and in silence. But so too do those of us with disabilities who wish to be part of the debate about the value of our lives. So too do those who parent and those who marry and those who love us who would wish to raise a dissenting view. I am told that justice will prevail, but I do not believe this ... justice, as everyone knows is blind and therefore, like millions of disabled people, is busy looking for a job.

This day, the first 'International Day of Mourning and Memory for the Lives of People with Disabilites' was created to call attention to the crimes against the lives that could have been lived, that should have been shared. It is also dedicated to those who continue to rise and fight, who refuse to be silent, who advocate long past exhaustion. And it is here that I want to mention Cousin Mattie again.The only thing I know about her was that she was a difficult child - a defiant child. Cousin Mattie was a fighter. I think that is the only reason I ever heard of her at all. She had to be discussed, she must have fought hard against the constraints of her life, because, then as now, families come to meetings when people become problems. Cousin Mattie will never know what her life came to mean to me.

I understood, long before it became time to announce my difference, what it might cost me. I understood that there was a land called 'away'. And I wasn't afraid of that land - because I had family there.

The Queston Has Been Asked

2012-01-22T06:04:00.002-05:00

Yesterday, yes Saturday, I did a training on abuse prevention for perhaps the youngest audience I have ever spoken to in my life. They didn't know it, because I never said it, but from my position of 'old man' it seemed like I was looking at the very future of services to people with disabilities. There wasn't a grey hair amongst them, nary a wrinkle to be seen, they all had 'evolution hands' which looked as if they could text messages and tie shoes while programming an I pod. Luckily, though, they still had an attention span and they seemed to be with me and listening from the moment I started.

This presentation which is a little different than the 'typical' presentation, involves an hour talking and then an hour chatting and answering questions. Again, I was lucky because after a nervous silence when it came time to answer questions, they began asking, well thought out and well formed questions. This was a bright group. I appreciated the opportunity to talk to them and the time was flying by - for me at least, I'm not so sure how they felt.

But then a young man sitting off to the side asked me what might have been the best question I've ever been asked in all my years of training and teaching. Now understand I don't say this lightly. I believe that every question is a good question. I understand the courage it takes to speak up and ask something, I understand the concern that everyone has that their question is a 'stupid question'. Whenever I am in a presentation and asking a question of the presenter I have the nagging fear at the back of my mind that I'm asking a question to which everyone in the room already knows the answer. So, I get it. I appreciate all questions.

His question, however, was a question that indicated that maybe, just maybe, there is a glimmer of hope that the system that serves can become a system that's safe. For the last many years I've been working in that direction. I want parents to feel that their children are safe in our hands. I want people with disabilities to never have to fear our hands. I want us all, at the end our our careers, to be proud of what our hands have done. And I was never, really, sure, that that was a possibility. But his question gave me hope. I tried not to gush at him about the question because all the other questions had been good ones - and I didn't want people to think that it had been a competition. I did say, 'I've never been asked that question before.' I didn't say, 'I have been waiting for that question for years, without knowing it, that's the question I've been waiting for.'

He put his hand up and when I called on him, he asked (and I'm not going to get the wording quite right), "Given you've talked about the power we all have in our relationship to the people we care for, what do we each personally do to deal with that power to ensure that we never, ever, misuse it."

A stunner of a question, isn't it?

I'm not going into my answer here and now as it would take too long and I'm way prouder of him for the question than me for my answer. I do want to say WHY I thought this question, finally asked, is so important, why it's the 'big question'. In that question is an entire acceptance of the personal responsibility we each have for the safety of others. So many staff see themselves as victims of the system as working for horrible supervisors as without control in their work as pawns in the human service machinery. Some of that may be true, some of it may just be whining, some of it might be simply an example of how some human souls are attracted to personal victimhood like iron filings to magnets.

This question begins in a different place with a different set of assumptions. This question begins with an understanding of deep personal responsibility. This question begins with the person as separate from the system they work in, begins with the very relationship between one person and another, begins with the hierarchy and power that comes in that relationship. Abuse is almost always a crime of relationship - that single fact is almost never acknowledged in human services. People talk about the responsibility of systems, rarely the responsibility of one individual to another.

I left that training feeling something new in my heart. A kind of lightness and, could it be, faith that maybe there is a new awareness beginning, after all THE QUESTION had been asked. Minds are now ready for a new concept, a new way of thinking about what we do. Tomorrow is the International Day of Mourning and Memory where I hope we remember lives lost, lives lived unlived. And yet today I'm feeling hope for a future where people will be in the hands of people who use their hands carefully and wisely and with full responsibility.

On some of my posts, I get some emails from people, who don't wish to leave a comment, that tells me that sometimes I write things and see things as significant that maybe aren't. The post I wrote about the woman with Down Syndrome signing her name received the most 'Dave, you've lost it' emails that I've recieved in some time. I suspect this one might too. And I think that's because I'm an imperfect writer who sometimes can't put into words what I'm really feeling. Sometimes I know, deeply, the meaning I want to get across but my words simply can't convey it. All I can say, in my own defense, is that yesterday, a few words were strung together to form a question that gave me a deep sense of hope in the future, and maybe that's all I need you to understand here today.

She Never Knew: The Interviews

2012-01-21T00:00:00.000-05:00

When I first saw the video, ‘She Never Knew She Never Knew,’ I sat in my chair stunned. The visual, the words, the powerful message with it’s underlying outrage touched me somewhere deep down in my heart. Institutional hallways have resounded with the echos of my steps. I’ve seen the ‘land of the long corridor’, I’ve seen what it does to people with disabilities who live there, I’ve seen what it does to the staff who work there and I've seen what it does to family who visit there. The video was stunning, but it was the words of the song which captured me. The incredible sense of loss … the mammoth theft of life which occurred in plain view. “Who pays the time for the crime against an innocent child?” is the question the song asks. The answer is stark …

So I approached my interview with Dana Mase, the songs singer and co-writer, with a bit of trepidation. I’m not an interviewer, I’m also someone who reacts to talent with awe and I was afraid of simply making a fool out of myself. I called Dana at the specified time and she answered with a warm voice and was very open to speaking with me. She told me that the song came to be because, Myles Wren, a friend who worked with people with disabilities was thinking of doing a documentary and wanted her to write a song for it.

During the course of their conversation Arlene’s story came to the fore. A lovely, kind and gentle woman had lived much of her life locked away for the crime of difference. Dana said, “If I was going to write a song about her experience, I had to get to know her, meet her, spend time with her. I found a woman who was warm and lovely. As I talked with her, I began to understand what had been taken from her. She was a little child, she had no say.”

I told Dana that her approach to Arlene's story was what captured my heart and mind. I have spent so much of my life working in the area of abuse and victimization that when I think about the captivity of the institutions, I think about what was done to people there. The outrageous stories of abuse which continue to shock us, continue to hold us accountable. However, Dana's song opened a different part of my mind to a different part of the story. I understood what what done to people with disabilities but I did not consider, as I should have, what was taken from them. Perhaps the greatest abuse was the theft of the life that could have been lived.

Later on, in visiting the institution where Arlene had lived to film the video, Dana reflected, “The contrast between this warm, beautiful person and this cold cruel institution was hard. It seemed just so unjust. Until I walked in there I had no awareness that this had occurred. This blew me away. It seemed just so wrong. For people to blossom, there must be warmth and love, this seemed to be the opposite of that.”

Dana also spoke about how, as she came at this from ‘outside’ from ‘not knowing’ she had to go deep within herself to write the song. In doing this she realized what pain had been experienced and that “you can’t fix it, it’s done, lives have been stolen, basic things that are taken for granted, she missed them, they were taken away from her.’ It was this understanding that has led Dana to establish a therapeutic riding programme for people with disabilities. "I want people to have all sorts of experiences open to them. I want them to be able to experience as much as they can in this world. I love horses, I thought this was a way I could share that love."

Myles Wren, was also kind enough to speak to me. He works with a lot of older people with intellectual disabilities. Many of whom lived in large institutions. Many of whom had stories to tell, stories that are unlikely to be heard. Arlene’s story touched him deeply because, over time, he’d formed a bond with her, ‘when my father passed away, Arlene put her arm around my shoulder and told me that she would be there for me.’ Here a woman who had no family, knew, instinctively, how to be family.

Both Dana and Myles, who is a co-writer of the song, hope that the song and the video will be used to raise awareness and to focus on the injustice of lost lives, unlived loves, unexperienced dreams. I believe that the song does that. I believe it is making a difference. Both Dana and Miles speak of how the song affects others with a bit of awe, Myles said, "Everyone who sees it, understands it, almost everyone cries," and Dana said, "The song touches people for a reason, what they are seeing is a tragedy beyond understanding."

She Never Knew She Never Knew … but we know what was done. And because we know we have a responsibility to make ‘never again’ more than a slogan, it must simply be our pledge.

For those who missed the video last time, here it is again:

International Day of Mourning and Memory: Update

2012-01-20T01:00:00.000-05:00

Today I'm going to interview Dana Mase and I'm really excited by that fact. Her interview will appear on Saturday, if all goes according to plan. I'm telling you now because I have a significant dip in readership on the weekends and I want to invite you to drop in on Saturday. Ms Mase is the woman who's song, 'She Never Knew She Never Knew' appeared on the blog a couple days ago. It fits very well with the theme of 'the International Day of Mourning and Memory' and I'm eager to hear the story behind the song. I've heard from people all over the globe that they will be participating in some way on Monday. There hasn't been much organizing time for this year but I'm gratified that many have seen that the purpose of the day has been embraced by so many. See you Saturday ...

Today's post follows ...

My Voice, Please, Leave Me My Voice

2012-01-20T00:00:00.000-05:00

Today I went shopping at lunch time, just after having a hair cut, and we were on our way home. We needed a few ingredients to make a wonderfully spicy Mexican soup. The store we typically shop at has a narrow entrance that sometimes becomes blocked by shoppers getting things from the deli counter. Even those who are 'two footers' have to wait some times. For us 'four wheelers' it's a little more common event. I don't mind. I'm never really in that much of a rush when I'm shopping.

Lunchtime was crazy busy and an older fellow was picking out something from the deli and he's left his cart right in the way. A couple of other shoppers moved his cart slightly so they could slip by. He didn't notice. I parked off to the side content to wait for him to finish. I really wasn't in a rush. He didn't notice me waiting and I didn't attempt to call myself to his attention. He'd be done soon enough.

A woman came by, clearly from the office tower, and was offended on my behalf. She saw me waiting there and caught my eye as she went past. I saw her reach out to touch the fellow to ask him to move. I said to her, not him, 'No, it's OK, I don't mind waiting.' She said, to me not him, 'He has no right to block the aisle so you can't pass.' I said, to him not her, as he was now aware of the kerfuffle, 'Finish up your shopping, I'll wait.' She said to him, not me, because clearly I didn't understand that my rights were being denied, 'You shouldn't block the aisle so this man can't get in in his wheelchair.' I said to both of them, 'It's OK.'

He looked embarrassed and apologized and struggled to move the cart. He was flustered so it took him longer than it should have and he nearly toppled it over and almost ran into someone. She looked triumphant that she'd righted a wrong, fought the valiant fight, brought the inconsiderate to their knees. I was mortified.

I was also angry.

From the moment I spoke to her, I made it clear that I could speak up and protest. In fact, I was PROTESTING, her interference so I could have easily spoken up and asked him to move if I had indeed needed to get in quickly. She didn't notice that I could say 'no' because she couldn't hear me say 'no' to her. How odd.

My voice was stolen and replaced by one that wasn't mine.

I've done that to others.

Never again.

One More Request

2012-01-19T01:00:00.000-05:00

Well, folks, the last day for voting on the Canadian Blog Awards is tomorrow. Rolling Around In My Head is up for 'best overall' and 'best personal blog'. Our niece Shannon at Half Soled Boots is up for 'best blog post' and Lene (a reader) is up for the same award - check them out and please vote for one of them. Belinda is up for 'best religion and philosophy blog' with 'Whatever He Says' ... and if you are inclined a vote there wouldn't go astray. My chances for 'best overall' are very slim (why does 'fat chance' and 'slim chance' mean the same thing?) but I would love to see a disability blog take that one. It's never happened. So, your votes do count. I know it takes time but I'd appreciate you taking a moment and voting. Remember, though it's the Canadian Blog Awards, you do not have to be Canadian to vote! I won't be bothering you again, unless I get nominated again next year.

Today's post follows ...

Answering a Question

2012-01-19T00:30:00.000-05:00

I think I had an 'ah ha' moment which answered a question I've been asking myself recently. Let me tell you what led up to it, then I'll tell you what it was. I was doing a training yesterday morning up near Davisville subway stop and, as that stop is wheelchair accessible, Joe and I decided just to subway up. This meant that I got to go in my power chair and thus it would be only the second time, ever, that I've presented to an audience in that chair. I was pleased at being able to move freely around while talking. So, in order to get to the realization, I've got to let you into my extremely private thoughts, so, get your boots on, it's going to be muddy.

So, we left and I started thinking, no that's not exact, worrying:

Worry Number One: While riding up to the subway station: "It's rush hour and there will be thousands of people on the subway, I've never travelled at rush hour before. I wonder if there will be room on for me on the platform. Anyone could accidentally hit my joystick and send me careening over the edge. Remember how when you were looking at pants for Joe in the Bay and the pants caught on the joystick and you'd dragged the whole display over and knocked over a mannequin before you untangled the pants, oh my gosh, you have to watch the joystick. People won't notice. What if I can't get on? What if there isn't room for me on the subway car? What if I can't get through the crowd to get on the train?"

By now, I'm at the train and on the platform.

Worry Number Two: While getting on the train: "I have to get into position or my chair will roll, I have to back into the space in front of the door. Oh, no, there are people there, I'll have to ask them to move. Remember last time and the person got really pissed off when you asked them to move, what if they get pissed off again, I've got to hurry, the train is about to start moving. Oh, good, they were nice about it, the woman even smiled. OK, I'm in place. Oh, no. I've never gone north on the subway, I don't know which side the stations are on, what if I'm in the door where people need to get off? I'll be in the way. Oh, good I'm at the front of the train, I'll be able to see and move if necessary. Oh, no. I hope I don't have to move because there is no room. OK, Rosedale is on the other side. Ok, Summerhill is on the other side. I think I remember that St. Clair is in the middle so I'll be in the way, oh, no, oh, OK it's on the other side too. Davisville which side will Davisville be on. Oh, people are lining up for the stop across from me, it will be ok."

By now, I'm getting off at Davisville.

Worry Number Three: On the platform: "Where is the elevator, there are a bunch of doors going in, that's where everyone is going, I'll follow them. I don't see the wheelchair symbol, maybe it's not there. That woman told me that there was no elevator and shooed me away like a child, why do people talk to me like that. Remember the time the sales clerk told me that I shouldn't shop in the store unless I had my Mom or a staff with me? Oh, there is the wheelchair symbol. YIKES, it's a narrow passageway, drive carefully, carefully, carefully, carefully. Is it good in a man my age for my heart to beat so fast Icelanders could polka to it? Oh, there is the elevator. Oh. No. I didn't check the website to see if the elevator was down. What if it's down. I'll be late, I hate being late. Oh, the light came on when we pushed the button, that's a good sign. Here is the elevator. The door looks small, what if I can't fit ... oh, it's tight but I can get in."

By now, I'm on the street rolling towards where the presentation will happen.

Worry Number Four: Riding off to work: "What if the elevator goes down while I'm here. How will we get home. It's cold out and I can't ride all the way to the next stop. We should have brought the car. But I like taking the subway. Oh. No. We should have thought this through. If it goes down we're just stuck. Remember when we tried to go to the Ballet with Ruby and the elevator was down. That was a long ride. Oh, wait, they have two elevators, surely they won't both go down. We could just ride the other way until we find a stop where we can cross over. That will work."

I arrive at my destination.

My realization? The Question Answered?

I know why I'm tired all the time.

Passport Photos

2012-01-18T00:00:00.000-05:00

It was a long day. I got home well after seven o'clock which made it over twelve hours since getting on the bus in the morning. A long, long day, full of things that needed to be done, things that I enjoy doing - true. It's just that there were too many things on only one day. It was actually dark out when I got in the car to come home.

Now, a long day for me, always means a long day for Joe too. He is there with me as I get on the bus and he's there at the office to pick me up at the end of the day. He has a lot on his agenda each day with planning travel and setting up trips and lectures, along with taking care of our own personal business as well. So, we were both tired getting in to the apartment.

Joe gets me to the apartment and then has to go back down and park the car underground. I typically sit at the computer and check the blog for comments (where is everyone?) and emails. Just as I reached for my glasses I was distracted by something on the computer screen and my glasses tumbled to the floor. For me, something on the floor might as well be in Lichtenstein. I looked at it, realized that I haven't had a passport to travel down there for years and years. I was going to have to ask Joe.

I knew he was tired. I knew, too, that he'd do it without comment or concern. He picks stuff up for me all the time. Which might explain why Joe has a slight Alemannic accent after a day when I've been very, very clumsy. I sat there and looked at the glasses.

I didn't want to have to ask him. I somehow just didn't want to need the glasses, didn't want to need his help. Not because he'd mind doing the chore. But sometimes, paradoxically asking for a chore to be done is more of a chore than doing the chore itself. Sometimes I think it's harder, way, way, harder to ask for help than to give it. So, Joe came in and I mentioned that I dropped my glasses. They were back in my hand seconds later.

There was something odd about them when I put them on, I checked, yep there was a passport stamp on the corner of them. I hope they had a lovely time down there in Lichtenstein.

The Scent of Prayer

2012-01-17T00:00:00.000-05:00

I sat quietly for about five minutes.

Soaking in the atmosphere.

Feeling where I was.

I arrived just as the chapel sevice was ending. In the hallway, outside the sanctuary, I met two young people with intellectual disabilities. The young woman recognized me from having met a few years ago and we chatted. She introduced me to a shy young man who told me his name in a voice stitched with velvet. We talked briefly. They looked very much at peace, very much like they had just left worship. I said my farewells and entered in to where I would be presenting for the day.

I've presented in this room many times over the years and it's one of my favourite places to be. It's a beautiful room, it has a lovely mural on the back wall and a huge window overlooking a frozen pond. After being greeted and given what I needed to set up, I was left alone for a few minutes to gather my thoughts. Sitting in a room still filled with the spirit of worship, still scented with prayers that lingered, I felt a kind of wonder. Being here many times before and worshiping with people with intellectual disabilities, has left an indelible mark on me. Each time I enter I know I will leave with new memories and the room will mean something more, yet something different the next time I come in.

But this is the first time I was to teach immediately following a service of worship. This is the first time I was to teach just after having greeted people with disabilities whose prayers had been prayed in that space. I wondered what they prayed for. I wondered what they had said, with bowed heads, to their God. I wondered if their prayers, which are echos of the hopes of hearts, placed responsibilities on my shoulders. I was there to train those who provided care. I was there to challenge and change, to inform and inspire, to teach and be taught.

I was alone.

Yet I felt surrounded by the quiet voices of prayer.

Never has a room better prepared me for what was to happen next.

Book Club: International Day of Mourning and Memory theme

2012-01-16T01:00:00.000-05:00

One of my regrets from last year was how the Rolling Around In My Head book club got lost. I had planned for us to have a day devoted to The Thousand Autumns of Jacob Zoet and I know a number of you read the book in advance of the book club happening. What with two deaths of two close friends within weeks of each other, and the resulting effect on my life, it just never happened. To be honest, one of the reasons it didn't happen is because I'm not a very good book reviewer. Whenever I try to do one I end up feeling like I'm in school and the work becomes drudgery. I had started doing these because I like to see how disability or the disability experience is used by writers of popular literature. I have been very, and surprisingly, affected by some of the books that I've read. I have a long list of books I recommend when asked by those starting disability book clubs of their own. I like supporting writers who incorporate disability into their stories and use that experience to broaden understanding. I also like the point of view of artists who aren't necessarily from the disability community. I have changed both practice and attitude from reading these stories. I have been powerfully convicted and motivated by some of the images that flash in my mind as the words pass my eyes. I think its a thing worth doing - discussing these books. So I felt that I let down you as readers and myself as blog host.

I still want the book club and I still want to participate. But what I've done is asked someone who is very, very, skilled at writing book reviews to come on board and do these for me. She has agreed. So I hope to have one of these at least three times a year. We are starting fresh this year with a book that I found incredible. I found myself dreaming about the story and the characters - I never do that. I think its because the experience is so real. More than that, the story really goes well with the 'International Day of Mourning and Memory' that we have coming up here on the blog. It's The Secret Scripture by Sebastian Barry. I can tell you for certain that the book club will be held on March 16th, two months from today.

Here's how to participate:

1) Sign up in the comment section

2) read the book, then do one of the next steps (or all of them)

3) write a review on your blog and have it post on March 16 and send me the link to be put on my blog

3a) read the review on my blog and leave a comment with your own review or reaction to the book

3b) form a local disability book club and send a summary of the reaction to the book

Any and all of these work.

Again, I apologise for my failure to follow through last year and know that it won't happen this year. So get to book and get reading!

Today's post follows ...

By The Touch of Her Hand

2012-01-16T00:00:00.000-05:00

I simply had to touch her hand.

Simply had to.

Without question, she had to be at least 50. At least. That meant that she would have been school age at a time when learning, as a possibility for people with intellectual disabilities, was just being considered. I am only a few years older than her and can testify that she, and others like her, were not in my school. Where they were, was a question I didn't ask. The existence of people with disabilities was kept, like societies dirty little secret, locked away. It shocks me, even now, the lack of outrage that greeted the realization that we had been lied to and deceived about the lives of our brothers, our sisters, our aunts, our uncles, our cousins, our neighbours. The passive acceptance that our personal history was affected by such towering bigotry, both astonishes and grieves me.

She wore a white blouse under a loose brown sweater. Around her neck she wore a necklace that glinted amber in the light. She had been sitting chatting with friends, revelation enough there, as the room filled in anticipation of an abuse prevention training session. That she had Down Syndrome was secondary to her name here, in a room full of people who knew her. Her laughter was free - a tribute to the fight for freedom that her life represented. She glanced over and noticed a line up of people at the front. Each person was signing in for the training. Some assisted by staff, some on their own in big, block letters, some with small neat printing.

Wanting to register herself, she told her friends that she was going to sign in. The line, by then, was long. But gradually she moved near the front. By now I was seated at the table where people were signing in. In a few minutes the workshop would begin and I would be using that table for my notes and my tea. I was getting set up. Joe was standing off to the side, finishing the preparations. I was double checking everything. There were going to be over 60 people there. I wanted to be sure there were no hitches.

Taking the pen comfortably in hand, she leaned down. In beautiful script, she wrote her name with lovely flourish. A genuine, freehand, cursive signature, flowed out of the pen and on to the paper. I saw it and immediately knew that there was a story behind that signature. I knew, instantly, that that signature had come at a cost.

It cost belief.

Some mother, some father, some family, someone had pried open an education system that denied the right to write to people with disabilities. Someone had yelled and screamed and, in so doing, pushed back the forces of bigotry and denial. During the time of her childhood, she would have known isolation and segregation and congregation. During the time of her childhood, she would have been excluded, been rejected, been turned away. During the time of her childhood, I too was a child. I never knew I never knew her. She did not walk the hallways of my school. She did not walk the streets of my town. She did not walk towards the future with expectation.

And yet here she was. A person with a signature. There was a miracle in her hands. She had an ability that would have been thought impossible. An ability that gives the lie to the idea of inability. An ability that challenges the thought that learning could not enter through the soul and leave traces in the fingers. An ability that most would assume she did not have.

She had.

I am blessed to live in the time that came after exclusion. I am blessed to be part of a movement that believes in possibility. I am blessed to have the opportunity to teach those believed incapable of learning.

But I am also blessed to have been offered her hand to shake, as she left the workshop. When she reached out to me, with the very hand with which she had signed her name, I took hold of the miracle. I touched magic.

And in that touch, was healing.

International Day of Mourning and Memory: Update

2012-01-15T07:26:00.001-05:00

January 23rd was chosen as the date for 'The International Day of Mourning and Memory' because it was the day that Sandra Jensen, a woman with Down Syndrome, won her fight to recieve an tranplant from a hospital that had refused her because of her disability. It's a day to celebrate the courage of those who fight and to remember those who suffered 'valueless' status within society; those who lived what many refer to as 'forgotten lives' and died 'unmourned deaths'. It is sad to note that Sandra's fight, though important in that it demonstrated the power of advocacy, continues to need to be fought. I urge you to read a post called Brick Walls and both leave a comment and follow the story to find out what action can be taken.

Today's post follows:

The Blackberry Bush

2012-01-15T00:00:00.000-05:00

I don't know if she wants to be identified so let me just begin by saying a big 'thanks' to one of you lovely readers who has been emailing me questions and ideas for fixing my blogging problem. In her (your) last email some ideas for fixing the problem were suggested, I'm not going to try them tonight, I'm the kind that loses sleep over these things so I'll try first thing in the morning when I feel fresh. And trust me, that particular window is getting shorter and shorter as the years pass.

Onwards ...

A couple days ago I overheard a woman saying to her friend that she had left her Blackberry at home and felt 'Just utterly crippled without it.' Our eyes met just as she said it and she flustered an apology saying, as people always do when they mean what they say, 'That's not what I meant.' It was a brief moment, not really worthy of note or comment here. Certainly not the stuff of a full blog post.

Until today.

Joe and I went out, rushing a bit, on Saturday morning. On our way I asked him if he'd brought his phone. He hadn't. He asked if I brought mine. I hadn't. A few minutes later he asked me what time it was as we were worried about being late, I realized that I hadn't put on my watch either. No phones, no clocks, would we manage? When we got where we were going, I'm not going to tell you where and I'll tell you why I'm not telling you a bit later, we relaxed having got there in plenty of time.

We both started giggling at almost the same time. We felt like we were playing hooky from school. We felt like we did in those days of our youth when we snuck out of our parents houses at night. We felt like we'd ditched responsibilities and had hidden ourselves in plain sight. It was delicious. Lovely.

We had unhitched from the world and, unlike my non-disabled conversant who felt disabled without her phone, I felt completely free without mine. I didn't have an urge to check emails, or check blog comments, or check work communications ... I didn't go into withdrawal. It was just lovely.

So we had a hidden afternoon - completely hidden. And I have no desire, now, to undo that. It feels like reclaiming privacy and reestablishing boundaries. It feels like saying to the world - hey, back off, we're out and alone and loving it. We aren't, we decided, going to become that couple that sits beside each other in a restaurant texting people who aren't there about what they aren't doing with people who are there. Nope, we're going to still have things to say only to each other. We're going to be adults and go out alone every now and then.

A lovely private afternoon during which I felt like a rebellious child and an unencumbered adult all at the same time. Amazing.

I fully recommend it.

International Day of Mourning and Memory; January 23: Update

2012-01-14T07:23:00.003-05:00

(video of a singer walking through the grounds and wards of an old institution, long closed. She sings of a woman, named Arlene who lived in that self same institution. Song is called, She Never Knew She Never Knew, written and sung by Dana Mase.)

Dear Readers: I am receiving many emails with ideas for these updates regarding the International Day of Mourning and Memory. I'm struggling with computer problems to keep these updates going and will do all in my power to keep everything happening on the blog. I ask that you help by promoting the day and getting the word out. I've heard from some organizations that are holding a moment of silence that day. Vita is looking at having one of our self advocates write her story of feelings about being institutionalized - her sorrow at lost years and lost friends. This we hope to share through the agency. Jon, an old friend, sent me this video which powerfully moved me and seemed to be an almost 'perfect' theme song for the day. I don't like the description of the song on YouTube saying it was about a woman 'wrongfully' institutionalized as if there are people 'rightly' locked away. Anyways, I found the words on line and hope I am not violating copyright. Please leave a comment on YouTube for the singer and the song. (today's post follows ... I really need help)

She Never Knew She Never Knew

She never knew about the tooth fairy
Or being tucked into bed by her daddy
She never knew about staying up all night long
Talking to a girlfriend

She never knew about first kisses
Or throwing pennies into wells and making wishes
She never knew that she never knew she never knew

Do you blame the mother that chose neglect or
Do you blame the teacher that decided to reject her
Do you blame the angel that failed to protect Arline

Oh Arline, Oh Arline

She never knew about Sunday mornings
Waking-up late in the arms of her husband
She never knew what it’s like to dry a tear
From the son, she never knew

She never knew what it’s like to help her
Daughter get dressed on the day of her wedding
She never knew what it’s like to hold a newborn grandchild.

Do you blame the mother that chose neglect or
Do you blame the teacher that decided to reject her
Do you blame the angel that failed to protect Arline

She was sent to live in the middle of nowhere
Where all the misfits go that don’t fit in anywhere
Who pays the time for the crime against an innocent child
I’m afraid it’s Arline

Oh Arline

Bridge:
Send them away
Pretend everything’s ok…
What’s been taken away
Can never be replaced

She was a little girl with dreams and smiles
Walked with a limp when she was only five
Her mother couldn’t handle the shame
She packed Arline sent her away

I met Arline at her group home
She’s 78 now and she lives all alone
She knits clothes for her dolls
Who are, her family.

Too late to blame the mother that chose neglect
Too late to blame the teacher that decided to reject her
Too late to blame the angel that failed to protect Arline

She was sent to live in the middle of nowhere
Where all the misfits go that don’t fit in anywhere
Who pays the time for the crime against an innocent child
I’m afraid it’s Arline

Oh Arline, Oh Arline.

Stuck

2012-01-14T00:06:00.000-05:00

I should never try anything new. I hit a button on Blogger and now am having a lot of difficulty signing in. I've had to set up my laptop and go in that way. This new 'Google Chrome' which I just now installed on my home computer which was supposed to support the changes at Blogger now refuses to link to allow me to sign in or blog. YIKES.

I'm at the age where I find myself left behind all the time. I look at these devises that kids have wherein they can interact instantly and constantly, sending videos, sending text messages, and I just freeze. So, here I am, stuck. I have no where to turn and no one to ask. I don't want to have to switch to my laptop every time I want to write something here.

Oddly I made a joke of this a few weeks ago with someone with an intellectual disability. I said, 'I feel left behind,' and he said, 'Join the club.' We laughed, but I get it now, really get it.

I feel dumb.

I feel inadequate.

I act resentful towards those who use technology that I don't understand.

I find myself filled with a kind of rage at both myself for being so dim and at the computer for being so hard. I want to hit something.

The other day when explaining to someone that Joe is very nervous about using the computer to play a DVD in one of my classes, a young woman said, 'Oh, that's silly it's really easy.' I said to her, quickly because I was rushing, 'Don't say that, it's patronizing to tell someone who's genuinely fearful that their fear is silly.' I think she thought I was rude but I was serious.

I wonder how many times I've waved away someone's anxiety about trying something new because it's something easy for ME (and it's all about me). I wonder how many times I've been impatient with someone's frustration at trying to ... name it ... tie shoes, cook a meal, dial a phone number.

I say it LOUD.

I'm sorry.

Really sorry.

Cause right now I'm feeling dumb and anxious and I can't see a way out. I'm feeling angry and frustrated because I feel trapped by my own ineptitude. Somehow, now breaking something or hitting someone, makes sense.

I won't do it because I've been taught not to.

But I want to.

Now I've got to go back and try tuning it off and turning it on again, that will work I'm sure.

AAA

2012-01-13T00:01:00.002-05:00

It's all part of a recruitment drive.

I'm a small part of a project that's has the radical goal of teaching abuse prevention training to abuse prevention trainers with intellectual disabilities. People with disabilities teaching people with disabilities how to stop abuse, report abuse and, even more important, how to keep themselves and others around them, safe. Much of the work is done now, the train the trainer curriculum is written, the curriculum to be trained is written ... now begins the job of interviewing people with disabilities who want to become trainers.

To encourage this, I've come into town to do the training a couple of times so that we could do a recruitment drive for people to apply to become trainers right after. Our hope was that having seen the training, they would understand exactly what it was that we wanted to teach them to do. So, we began with a smallish group in the morning and a largish group in the afternoon. At each training people participated well and seemed to be having fun learning. In the back of my mind I kept wondering if there would be interest in the group for people to become trainers.

There were as always, wonderful moments:

One woman came to the front, hesitantly, with every step she took I could see courage. She did a role play and nailed the question that followed. The group spontaneously burst into applause. Her smile broadened and tears filled her eyes at the acknowledgement. She whispered to me, 'I did good?' I said, 'Yeah, you did great!' She walked back to her seat a more confident woman. Now I believe that this woman gets a lot of acknowledgement and praise in her life from her care providers. I saw her with them. But I wonder if this is the first time she received acknowledgment as a person with the capacity to learn. It made her different.

If I may be so selfish as to put my own experience in here, I could choose a thousand others. The afternoon session had over 60 people in it. They were red hot as a group and laughed and applauded, cheered and were cheered. At one point in the afternoon I was in the middle of the group, I always have a broad aisle way set up allowing me to up and down the room, and everyone was laughing.. I slowly turned my chair in a 360 circle while talking and asking questions. For a moment I felt that wonderful embracing feeling of being dead center in community. It was joyous.

Then at the end of each, I spoke briefly about the project but then a self advocate involved in the project came forward to explain more about what we wanted to do and describe how to apply. Then, we waited. Each time a line up formed, a quiet, solemn line up. There was determination on those faces. They wanted to make a difference, they wanted to help out. They wanted, most of all, to be part of the solution.

And with that 'Advocates Against Abuse' is off and running ...

I'm Not Writing This Blog ... No I'm Not!!

2012-01-12T00:01:00.001-05:00

I'm not going to write about having to leave another hotel because they said they were accessible but were not.

I'm not going to write about how upsetting this is and how you never get used to it.

I'm not going to write about how much planning and calling goes into a trip.

I'm not going to write about being humiliated by having to sit in a lobby, with a line up behind me, and talk about toilets.

I'm not going to write about how they said, 'but we have bars the shower'.

And I'm really not going to write about saying, 'so you want me to shit in the tub?'

No.

I'm not.

I'm just not.

I'm tired of those stories and you must be too.

So, I'm not going to talk about how exhausted this makes me.

And, I'm not going to describe the weight this places on Joe's spirit.

I'm simply not.

But because I'm not writing about this, I'm thinking about it constantly. So I can't think of a single other thing to write about. So I'm not going to write a blog at all.

Instead I think I'll go and sit on the toilet we had to drive an extra twenty minutes to get to. And it better be worth it.

International Day of Mourning and Memory: Update

2012-01-11T17:48:00.002-05:00

(black and white picture of young man sitting
on a bare floor on an istitution ward:

photo from Christmas in Purgatory by Burton Blatt and Fred Kaplan)

Hello, thanks to all of you who are getting on board for the day. I'm gratified that so many are helping out and doing things individually or within agencies or colleges. John R, has created a Facebook Page ... and for those of you who want the actual, in writing address, it's ... http://www.facebook.com/pages/Jan-23-Intl-Day-of-Mourning-and-Memory-for-people-w-disabilities/327110000642678 . Thanks to John for doing this. I'm going to post about this day every three or four days up until the day itself. I'll still be writing daily blogs separate from that so it's going to be busy here on Rolling Around in My Head. I again ask for people to link to the Facebook page or to the original post and encourage others to join in. I know there's little time, but it's too late in coming as it is!

Paws to Reflect

2012-01-11T00:02:00.002-05:00

We were driving home from work, coming down Yonge Street, and we were stopped at a light. Suddenly there appeared in front of us one of the world's smallest dogs. The dog was walking with incredible purpose, eyes on the small parkette on the other side of the road. Attached to the mini-mutt was a retractable leash stretched taut. On the other end was a big fellow riding an equally big power wheelchair. It looked like a very low budget Santa fitted out with One Tiny Sleigh-dog. Joe and I both started laughing. The fellow in the chair looked over at us and saw us laughing. He said something that we couldn't hear because the window was up.

I rolled mine down and he said again, 'He's sure that he's pulling me across the road. I let him believe it, he needs to feel like he is helping out.' We all laughed again and the dog, with dignity fully intact, was sitting at the park waiting for the lead to pull the chair the rest of the way.

A few days ago we were coming home from the store and my chair was loaded down. A bag of groceries hung from the back. I held a huge and heavy bag in one hand and steered the chair with the other. Joe said, 'Let me carry something, I don't want to use you as a pack mule.' I said, in all seriousness, 'You do so much for me, let me do this for you.' And he did.

He did because he knew I needed to do what I was doing.

Sometimes, I think we as disabled people can lose our way - always being the person receiving, never being required to give back, to contribute, to make ourselves necessary. The only antidote to the addiction created by receiving is giving. I need to take that antidote. And even though, Joe walking along side a fat guy in a wheelchair covered in bags, may look as silly as a little dog pulling along someone a hundred times his size, it doesn't matter.

Because I need to feel like I'm helping out.

JANUARY 23: INTERNATIONAL DAY OF MOURNING AND MEMORY

2012-01-10T00:04:00.003-05:00

I need your help.

Colleen, a frequent visitor who comments regularly, left a comment the other day that I'd like to pull out for your notice, it gave me an idea:

I want to tell you about something that happened to me at church ... I was sitting behind a young man who just from his haircut and the slope of his shoulders and the way his glasses slid down his nose made me think very much of my brother, Gerry, who passed away a couple of years ago. Gerry had Down Syndrome and lived most of his life in institutions. In my particular brand of Christianity we pray for "the repose of the soul" of deceased loved ones, which I often do for Gerry and so do the rest of my family. A huge wave of grief washed over me - who prays for the souls of those thousands of people who died unknown and unloved in the institutions - who prays in gratitude for their lives? Starting now, I will.

I remember the first time I walked through an institution graveyard. Weeds had overtaken most of the graves and I had to pull away dead leaves and brittle branches just to see the names that were there. It seemed to me, even then, to be tremendously sad. It was like those who lived neglected lives were now resting in forgotten graves. On most of the markers there were simply names and dates. No kinship mentioned. No earthly ties acknowledged. Just the date that began the life and the date that life ended. As if the time in between held no story to tell.

Times have changed, I know. Many people with disabilities who have experienced community also experienced being valued. Being loved. I am told of their passing by others who's voices break under the weight of sadness. Eyes fill with tears and fall onto chests and echo the broken heart. I see it. I feel it. Mourning a long time coming, has come.

But not for all. Many people with disabilities, in Canada and around the world, still live lives locked away. Still live captive for the crime of difference. Still wait for freedom. I remember being with a woman with Down Syndrome, an activist, at a conference. She listened to a presentation on life in an institution. She had never experienced anything like it - being loved and adored by her parents. She knew of 'the land of the long corridor' and spoke with horror at the very idea. At one point in the presentation she got up and fled, hand to face, weeping. I followed her out into the hallway. She was crying because for the first time she learned that some never left the institution. That some died there. In her mind she thought that all got out, that all got to experience freedom. She broke down and simply wept. Of her, others spoke, later saying that maybe she was too sensitive to be in an advocacy role. I said, and still believe, maybe none of us are sensitive enough.

I am taken with Colleen's pledge. I wonder if we here, in this little community, can start something that might grow. I propose the 'International Day for Mourning And Memory of the Lives of People With Disabilities'. The day would be one of remembrance of those whose lives were not celebrated or remembered, the lives of those who were slaughtered by care providers or brutalized to death by bullies. It would also be a day to remember the entire disability community - the elders who came before and who made the world different and better. It would be a day where a moment was taken to pause and reflect and remember.

To me, remembrance has always been an important part of what I do and how I live. I have always, for example, marked January 23rd in my calender as a day to remember. Let me tell you why. Sandra Jensen was a woman with Down Syndrome who was denied a heart transplant because of her disability. It seems that people thought that a perfectly good heart should go to a perfectly good person - and though Sandra lived a life of quality and contribution, she was not considered. In fact, a transplant had never been given to someone with an intellectual disability. They didn't know who they were dealing with.

Sandra was an advocate and she began. She fought against prejudice. She fought against stereotype. She fought against hatred. Her message was one of hope and power. She wanted her life to be valued. She wanted everyone to know that she loved living and the she rejected any notion of 'better off dead'. She stood for all people with disabilities. She stood for all to be valued. She fought and she fought hard. And she won. On January 23rd, 1996, she got her heart. I would reckon that the day she received her heart, so did the medical system. Her fight changed laws. Her fight affected the lives of people with disabilities right up here in Canada and around the world. So, I mark that day.

I've always done this privately. I've never written about it. Spoken about it. Ever. It was just me. This year, I'd like you to join me. I'd like 2012 to begin the first of a yearly event, the 'International Day of Mourning and Memory of the Lives of Disabled People.' I know that this is soon and that there is no notice. But in days of instant communication - who needs time?

I ask you to join me. I ask you to get the word out. Facebook. Twitter. Use social media. Contact friends and family. I know that this blog has a large readership. People with Disabilities use your connections. Agency directors, supervisors and staff, arrange something in your agency. College professors have your students come up with an idea for marking the day. Just make it happen. After the 23rd maybe we can arrange something more organized next year. But for now ...

January 23, 2012 the first annual 'INTERNATIONAL DAY OF MOURNING AND MEMORY OF THE LIVES OF PEOPLE WITH DISABILITIES

February Disability Blog Carnival - Coming Soon

2012-01-09T00:08:00.001-05:00

I'm in love with another man!

Joe may be shocked to read that, but I need to confess and I confess for a reason. I am hosting the February Disability Blog Carnival and have searched around for the theme. Clearly February has been declared by the greeting card companies as the month that we declare our love for each other but then, I've done that before here on Rolling Around In My Head. So, I've decided to stick with LOVE ... but here's the thing. I'd like the Blog Carnival to focus on the love we have for the things that make the world accessible for us.

Like the Blue Wheelchair Guy ... the little hottie all sexy in his chair ... or like ... your hot pink hearing aids or your flashing yellow crutch or you princess pink wheelchair. Or even something like my plain old black hospital style wheelchair. Sometimes I smile when I wake up and see my chair waiting patiently beside the bed to welcome me into my day and into my world. I feel, in those moments, real affection for the thing. More than that when I'm in it it becomes part of me, a real amazing part of me.

So, that's the challenge. Send me blog posts to daveandjoe@hotmail.com with 'Blog Carnival' in the re line. Or post the link here in the comments section. I'd like to have these in by February 10. Thanks!

Today's post follows ...

A Poll: Petty or Not

2012-01-09T00:03:00.002-05:00

OK, I'm almost over my cold. So, I went out today and ended up getting really, really, annoyed. I know that what I'm going to write is petty. I tried not to write this because I don't want to be seen as petty. And then when I realized that I simply couldn't not write it. Then I wondered if it was petty at all. So, I'm up to your responses.

We went to see an exhibit at one of our local museums - it's not one we go to often. We arrived just as a tour was starting so we joined in. The woman giving the tour was wonderfully well informed and spoke with a real passion for her subject. I enjoyed her presentation from the start. However I ended up being frustrated from the moment we started moving. I'd get into position where I could see her and the display case that she was speaking about. And then ... every time, someone stepped right in front of me blocking my view entirely.

At first I thought that this was just a typical people being rude to people kind of thing. The loss of our social contract to consider others, to me, is one of the tragedies of our age. However, I noticed that I was wrong in my assumption. People were very considerate of others. The people who freely stepped in front of me, always blocking my view, never stepped in front of any other person on the tour. In fact, they always checked to see that they weren't blocking someone else and NEVER stepped in front of someone else.

But with me, it was like I wasn't there. Now, can we please acknowledge that I'm probably one of the most obvious people you will ever meet. It's impossible NOT to see me. I guess I'm easy to see and just as easy to ignore. I guess I'm the guy in the crowd that doesn't matter. I keep asking why I try so carefully to be considerate of those who don't return the favour.

The other day I was in the mall and saw a elderly man, a fellow power chair user, who I see often. He and I have chatted a couple of time. I was getting on the elevator and said to him, 'Drive carefully, it's packed in here today.' He smiled and said, 'I drive carefully all the time, it's getting harder not to drive aggressively though.' And I knew exactly what he meant.

So, choose a letter and let me know in the comment section which best describes your response to what I've described:

a) it's flat out petty

b) you were sick and were probably over reacting

c) you have a point but it's not a big deal

d) that kind of thing pisses me off and is evidence of how people with disabilities are socially dismissed

(TO ALL BLOG VISITORS: IMPORTANT BLOG ANNOUNCEMENT TOMORROW - PLEASE DROP BY)

Free, Now

2012-01-08T06:09:00.002-05:00

He got on the subway and took a seat. If he recognized me, he didn't show it. He glanced towards me passively and then pulled out of his bag, not surprising me in the least, a comic book to look at. No one much noticed him, no one paid much mind at all. I sat there, in my power chair, as if riveted to the spot. Three stops later, at Dundas, he got up and got off. I watched him as he walked, part of the crowd, away from the train.

I still dream of the place. I suppose I'm destined to be haunted by it for the rest of my life. Sometimes, in my dreams, I'm walking through the underground hallways, just past the morgue, and listening to my footfalls echo into the distance. It's dark in those institutional corridors, darker than it was in reality, and I can hear the sounds of people, their voices made inhuman by the distance and the darkness. I always wake from those dreams disconcerted.

It was in that place that I met him. He was young then, maybe in his late teens. But then, I was young then too, maybe in my early twenties. Though we were close in age - our lives held little in common. He had lived caged. I had lived free. He had lived without expectation. I had lived with hope for better. There was a gap between us, made larger by the power that my position gave me, that would never really be bridged. But I liked him. I liked the momentary acts of defiance that I saw in him. I liked that the spark of life had not died in his eyes like it had died in so many others there. I liked the fact that he had passions, like the comic books he carried with him everywhere, that still gave him joy.

I remember once taking him out to the mall and the surprise on his face when I let him choose where he wanted to go. I had thought it was his trip to the mall, not mine, and this he found unusual. But he adapted quickly and we had a fun afternoon. It was very, very, early in my career, only a year or so in, and I remember then - back when the idea of community living was in its infancy - wondering what he was doing in that place. I wasn't mature enough, or strong enough of imagination, to wonder what all those living there were doing there. But I did wonder about him. I didn't know his life story or how he wound up in that place, and neither did anyone else really. He was disabled. He was institutionalized. That's the way of things.

I didn't last there long, less than a year. When I studied psychology in University, when I made my mind up that I wanted to work with people who had an intellectual disability, this wasn't what I had pictured. I hadn't pictured working in this place - bare walls with echo as a soundtrack. I hadn't pictured the 'prisoner / guard' relationship that I was expected to develop. I hadn't pictured the hugeness of the crime of institutionalization. The pictures in the textbooks didn't prepare me for the smells and the sounds and the sensations that hit me when first opening the door of a building with a kilometer long hallway.

So I said 'Goodbye' and was on my way. I never again went into an institution unless it was to take someone out. I never again crossed the threshold without bringing the offer of community in my back pocket. But then, when I left, I had no idea that one day I'd be back, to that very place, in a different capacity with a different offer. When I told him that I was leaving he reminded me of the day in the mall and thanked me for being kind. I told him that he should expect kindness. I realize now that that had been cruel.

And there he sat. On the subway. Reading a comic book. In Toronto. Alone. He got off not even looking in my direction. Not even seeing the big guy in the power wheelchair holding for dear life onto a pole. He got off and went into his life. As he passed in front of me I could no longer smell the stink of captivity, I could no longer see the shackles of imprisonment in his movements or his gestures. He was simply ... free.

None of those around him, those who didn't notice him, would have understood that they were sitting next to a man to whom society had been violent and cruel. A man who had been ripped from the life he should have lived into a life that none could imagine. A man who bore captivity with grace and with dignity, and who's ever step in freedom is a condemnation of every step he took caged. A man who's life store will never be told, yet who's story has the power to shame those in power, to blame those who accepted, to hold accountable the evil of prejudice.

It was a gift to see him free, now.

I have lived long enough to see the captive freed. I know that the building that housed him, without ever becoming home to him, sits closed and empty. I hope that the next time I dream of being there, I will hear only the echos of my feet, and not the sounds of others there. I hope that even in my dreams, the place is empty.

Sometimes It's About Prejudice

2012-01-07T03:33:00.002-05:00

Recently I experienced disphobic hate that was specific, targeted and purposeful. I was so stunned and hurt by the encounter that it took several days for me to process and a couple of weeks to attach words to the experience. Joe, too, was stung by the force of the blast. Without question we were victims of a disability hate attack. No, I haven't written about this. No, I'm not going to now. As it happened in a public building, done by a public employee, I'm dealing with this through very, VERY, formal means.

I was talking to someone I know and trust, I must describe them here for the purposes of this post as 'non-disabled'. I was asked if something was upsetting me. And there was something. After finally dealing with the trauma that arises from blatant bigotry well enough to do something about it, I had sat down at the computer. First I composed myself, then I composed a letter. Just putting the experience forefront in my mind to describe it was painful. But I felt that I needed to do it. A few hours later I was asked about my mood. For the first time, out loud, I described what happened. The listener was suitably horrified.

But then they did something quite shocking.

They said, 'Well, let me tell you, that kind of thing doesn't happen just to disabled people ...' Then I was told a story about a rude clerk and a dismissive interaction. I listened and said all the right things. But inside I was seething with upset and maybe even anger. I felt entirely dismissed. Yes, the story that was told me was about a nasty person and a nasty interchange. That wasn't the problem. The problem was using a story of general nastiness based on mood and circumstance to disprove the larger point that bigotry against people with disabilities exists at all.

I wished I hadn't told my story.

Later, with someone else, I decided to try again. And the same thing happened. My story, of being victim of a specific, targeted and purposeful attack against me as a person with a disability was dismissed and my fellow conversationalist followed up with a bad customer service story. And again I felt as if I was being subtly told that prejudice against people doesn't exist ... 'Don't think that happens only to disabled people ...'

Now I'm fearful of telling the story at all.

It's true that we live in a world where common courtesy isn't so common and common decency is entirely uncommon. I know that. I think I can tell the difference between a chance encounter of nastiness that has nothing to do with anything other than I am at the receiving end of someone's bad mood or horrid temper, and when someone specifically targets 'me' and my 'disability' for harsh treatment BECAUSE AND ONLY BECAUSE I am a disabled person. And there is a difference in emotional reaction to a bad temper and a hate crime. Seriously.

Part of me wonders why people who I know are generally quite sensitive to disability issues would be so dismissive of my experience. I don't think these are bad people at all. I think that somehow they think that helping me to minimize my experience by explaining it away as a momentary lapse of unkindness will be helpful for me. And I think, in reality, that it is helpful - but to them, not to me. Having to acknowledge the existence of prejudice towards people with disabilities means having to be more careful in scrutinizing one's own behaviour. Those who believe that reports of 'racism' are exaggerated claims by oversensitive people looking for offense never, ever, ever, have to examine their heart for racist thinking. It works. It's comforting.

Again, I don't want to imply that those I spoke to about this were purposefully dismissive - they just were. I wanted them to acknowledge that what happened was deeply wrong and part of a culture of devaluing people with disabilities. I wanted them to be horrified at the existence of such prejudice in others. I wanted them to understand the source of my upset and even, maybe, acknowledge the trauma that resulted. I wanted their words to hug me and reassure me. Instead I felt brushed away like a child told simply to ignore bullying.

Let me tell you here and now, from my experience, prejudice exists towards people with disabilities. More than that, the experience of prejudice is always hurtful - to the core hurtful. It needs to be acknowledged in order to be challenged. It needs to be challenged in order for change to happen.

And I guess I'm figuring change is a long way off.

Piles of Crumpled Kleenex

2012-01-06T05:29:00.000-05:00

I have a cold in my nose.

Talk about a disabling condition!

I think it either unfair or ironic, I don't know which, that, sitting in a wheelchair, I have a runny nose.

So yesterday, after work, we had planned to go and do things. I opted out. Joe was understanding. I curled up on the couch, under a wonderfully warm Bay blanket and read books, watched DVD's and snoozed. It was a day of just trying to get rest to get better.

So dear friends and readers - this is all you are getting today. I'm sorry, I do try to blog daily, but I've nothing to say, nothing to write about, nothing to contribute.

TTT
Til tomorrow then.

Note To Readers

2012-01-05T05:26:00.000-05:00

As many of you know now, at Vita we are writing articles for our staff that hopefully are helpful, challenging and educational. We've just started this and have now sent out two, both on supporting people through the holidays. Our new one is just done and available. It's on how to create a positive atmosphere while working with each other in human services. I've just sent it out to all the people who requested the last one (if I missed you, I'm sorry) and want to make this one available to readers as well. Just send an email to me at Vita and I'll send it out to you. Apologies in advance for any delay in responding. If you don't get it within two days, please request again - I get a lot of emails and sometimes one gets lost. Contact me at dhingsburger@vitacls.org and it will be whisked of to you.

Today's post follows.

Finally A Diagnosis

2012-01-05T00:20:00.002-05:00

He was going up one ramp, I was going up the other. The two ramps go up either side of the entrance stairs into the mall. I smiled at him, the kind of smile that says 'race you to the top'. He got there first, I waited as he went in, congratulating his back as he rode on in front of me. A few seconds later he blasted a woman who had accidentally stepped in his way. I've seen this before. I've done this before. Even so I felt bad for all involved.

As we got to the elevator he had positioned himself such that it was easier for Joe and I to get into the elevator that had arrived. He would have had to back up and negotiate a tight turn to get into it. He near shouted at us to take the elevator. Yikes, someone's having a bad day. We got on, pushed the button and rode down. We had only a couple of things to do so we rushed off. In the store there was a crush at the cash register so I went round to meet Joe on the other side.

He rode by again and again I chanced a smile. A few seconds later he pulled up beside me. He must have turned around to come back. He said, 'Hey, sorry about earlier.' I brushed away his apology saying that I had bad days too, not to worry about it. He said that he'd been having too many bad days lately and that he needed to shake himself up a bit and he though apologizing was a good start. I said that it was indeed.

As he drove away he said, 'Sometimes being an asshole is my primary disability.'

Even though I've heard the line before, I laughed and said that I am occasionally 'manners challenged' myself. Again we laughed.

It was just a small interaction but he really added to the quality of my day. In a real way he was a 'roll model' for me - apology, quick, meaningful, apology can jump start a day. I need to remember that because I find apology a difficult thing to do, especially when I've just been an asshole. Why do I want to save face when I've shown my worst side? I don't know the answer to that question.

Do you?

Towering Identity

2012-01-04T00:16:00.001-05:00

Identity is an interesting thing, isn't it.

I often hear, particularly politicians or celebrities or sports stars, say about their disability, 'I don't see myself as having a disability.' Which is kind of like an immediate disavowal of both the concept of disability and the reality of the disability community. They'd rather be recognized for 'ability' and in saying so they imply that disability somehow negates ability. It doesn't. It never has. But the game continues, non-disabled people continue to laud disabled people who claim non-disabled status. It's like somehow everyone is buoyed up at the continued impression that disability is less than ability. OK. Let them have it.

For me, though, something different has happened. Over the last five years I have come to both embrace the concept of living with a disability and identify with the disability community. It is who I am. So, there is no conflict in my mind between who I am, who I present myself to be, and most importantly, how I think about myself to myself. I'm happy with that, I came out of the closet because I had no desire to life a life of discordance: a lie humming one tune, the truth another. Whatever the cost of truth, and there was cost socially and professionally, it was worth the fact that my soul could sing along with my life.

So, the other day Joe and I were talking about going to the CN Tower to take some friends. Joe said, 'Well, we need to check out to see how accessible it is.' I said, 'But what do you mean, the last time we were there we got in fine.' Joe looked at me quizzically and said, 'But you were walking then.' I said, 'No, I remember clearly being in a wheelchair.' After a few minutes I had to admit that, indeed, I was walking. But in my memory, even now, I remember being in my chair.

Now, I can grumble about how disability is taking over memory. Or, I could realize that I remember myself in the past and myself is simply myself. I remember 'me' being 'then' and 'me' is a wheelchair user. Nothing else about the memory is skewed. We went over the last visit in detail and I'm on the money with everything that happened, everything that was said. Joe and I are completely in sync with the visit and the dinner.

Except.

I was in a wheelchair.

Identity and self acceptance has done me a favour, I realize that my past would be the same as my present. I would have still gone to the tower, I would have still had dinner with my friends. In this instance my wheelchair is transportable through time. Cool.

I wonder if in a year or two I will expect to look at my baby pictures and see that cute little kid riding a chair!

It All Begins

2012-01-03T06:00:00.000-05:00

I arrived at work yesterday to find that the New Year felt almost exactly like the Old Year. My desk sat cluttered waiting for me. What? No elves came in to clear it up and organize the papers? What? The to do list sat right by my keyboard looking just as accusing and disapproving as it did a few days ago. What? I had meetings to go to and calls to answer and emails to write and send and read and respond. I wanted to scream out - but it's NEW YEAR!!! You know out with the old, in with the new. But I didn't. I looked out and saw pretty much everyone else going through the same thing.

So, for me, I've decided that it isn't a fresh start after all. I mean, I'm nearly sixty, I've had a lot of fresh starts. I guess, to paraphrase ... all fresh starts lead to more of the same. I've decided that it's like my life is like a journal and 2011 is on the shelf and 2012 lays open before me. I love journals. I love opening them and seeing the fresh white paper ready for me to start jotting notes in. What story will be told this year? What places will I go? What people will I meet? What changes will I be required to make? What mistakes will bring happiness, which, pain?

The story of 2012, of course, takes off from exactly the same point as 2011 left. It's not like the movies where time flutters ahead and now we are in a new place with a new Dave. No, I'm stuck here with me, plodding along. As I went about the business of living and working, I realized that I was OK to set pen down in the new ledger and begin writing. There was a comfort, somehow, in the messy desk, and the stack of emails, and the meetings jotted down in my day book. There was a comfort in the recognition that there is a hole in the fabric of this world into which I fit. It's an irregularly shaped hole, but it's there.

So for me the New Year began, not with the holidays and the sparklers and the cries of drunks in the street. No, for me the New Year began by returning, from the land of holiday, into the land of expectations - and finding that my place was still there for me and that I was needed. So in my ledger book I placed pen on clean sheet and wrote simply,

And again ...

The Taste of Anarchy

2012-01-02T00:16:00.002-05:00

You what we did this weekend?

Well, nothing.

No, not nothing, something a bit more important and a bit more fun than nothing.

We made plans, set them out in our mind, checked and double checked both times and places. And then,we didn't do them. We just looked at each other, each day for each activity and said, 'Let's just stay home.' And that's what we did.

There is something wonderful about doing nothing instead of something, if that makes sense. To plan a day at home is lovely. But to plan to be away from home and then stay at home instead is oddly even more lovely. So we had two lovely, extraordinary days where we chucked in the planning and chucked in the organizing and chucked in the expectations.

Lovely.

What's really cool about this is that we were allowed to because the only people we had to consult was each other.

I wonder how many people with disabilities who live with care providers got up in the morning and said, 'You know, I know we planned and all we for me to go to the movies to day, but I just don't feel like it now.' And I wonder how many of those people went. How many were 'talked to' about irresponsibility. How many were 'strongly advised' to follow through? How many were given lectures about the time and effort made in planning?

I'm guessing that there were a few, hopefully not many.

It struck me as I was preparing to write this how non-compliant I am with my own plans and my own schedule. At work, I'm pretty compliant, I do what I'm supposed to do when I'm supposed to do it. I have deadlines in my head. I know that I have to have one script and one proposal done by the end of next week. And, it will be done. But, at home, I'm just not so good at sticking to plan.

Joe and I decided we really wanted a stew. So after the movie on Friday we went and picked up all the vegetables and made sure that we had everything we needed. On the way home we both confessed that we were a bit too tired to make stew. So, we had left overs instead. The stew vegetables sat there, unused and in fact, by the accusing look in the potato's eye, annoyed.

Saturday we got up and made stew in the morning so that we'd have the day to go out and do what we had planned. And then, we chucked it in and stayed home and smelled vegetable stew slowly cooking on the stove all day. It was awesome.

You know what else we did?

We ate forbidden foods! Listening carefully we thought we could hear a nutritionist sobbing somewhere. We munched on Butter Tarts while humming O Canada! They didn't just taste sweet, they tasted, divinely, of rebellion! It was great. Sometimes Joe and I live as if our parents are away for the weekend.

I wonder how many people with disabilities went into the fridge and grabbed something not on their diet, not on their prescribed and agreed to health plan, and were told to be sensible? I wonder how many, in the spirit of a season of feasting wanted to simply feast and had the food taken out of their hands? I wonder how many incident reports about butter tarts were written up, in serious hand, for meetings in the New Year?

I'm guessing that there were a few, hopefully not many.

So we broke rules this weekend, it seemed like a good way to end one year and begin the next. We know that the year coming, like the year past, will have demands and expectations and tasks. We know that. So it was nice to rebel, a little bit. It was nice to break rules, a little bit. It was nice to be irresponsible, a little bit.

Because life can be hard, days can be long, and years can pass both quickly and slowly at the same time.

Which is why God made butter tarts so sweet.

And couches so soft.

A Request, A Reminder

2012-01-01T04:58:00.000-05:00

Today's blog post follows this shameless plea ...

The voting for the Canadian Blog Awards closes on the 20th of January. Those visiting today may have a few extra minutes of holiday time to go vote. Rolling Around in My Head is nominated in the 'best overall' and 'best personal' categories. You can vote by clicking here.

You can only vote once and you may, depending on things beyond my comprehension, have to leave the site and go back to vote for each category. It seems it works that way for some and not for others.

May I also ask you to consider Shannon at HalfSoledBoots or Lene for best blog post and Belinda for best religious or philosophy blog?

I truly appreciate the effort it takes to vote and am thankful for those who do.

What World ...?

2012-01-01T04:41:00.002-05:00

"What world do we live in?"

Ruby's question, that came with no obvious prompt, led me to a long explanation. I explained to her that there was only one world. That that world was broken down into countries, and provinces and cities. I took a map, when I get going, I get going, and showed her where she lived and where we lived. I then showed her the 'revolver map' on my blog so she could see the world spinning in space. She listened carefully to my explanation and when I was done, she furrowed her brow and then asked again, "Yeah, but what world do we live in?"

Could it be that from the vantage point of childhood that she understands a profound truth? That there is, indeed, only one planet - but that the people who live on that planet live in vastly different worlds. I understood this, briefly and very deeply, when I left the world of the walking and entered the world of the rolling. My world changed, socially, politically, professionally and personally. My existence became defined by where I could go and where I couldn't go. I found barriers of concrete and barriers of attitude. My options narrowed while at the same time my vista's broadened. I saw things I never saw before. I lost and I gained, probably in equal measure, but, for certain, I took up citizenship in a vastly different world than the one I had lived in.

Being ripped out of the social fabric is a startling experience. It caused me to see the blissful privilege with which many live, and which few question. Things I never noticed, things which granted my access while denying it to others became glaringly obvious. How could I have not noticed the absence in so much of the world in which I had moments before walked, of so fellow citizens who moved differently? How could I have not noticed the existence of exclusionary practices and physical barriers? How could something that was obvious fifteen seconds after sitting in a wheelchair be something to which I was so oblivious?

I complained about lack of access to a store owner who said, in all seriousness, "we don't get disabled shoppers here".

And yet the existence on one planet of different worlds could be written about by any one with any difference. Exclusionary practice isn't limited to those with disabilities. Access is a concept that is understood, though defined differently, by others who find barriers because of faith, of gender, of sexuality, of race, of height, of weight, of wealth, of education, of age, of wellness, of attractiveness. Of ... everything. To a certain degree, those of us with dsabilities who have claimed the word 'access' and 'accessibility' need to give it back. Perhaps if there was universal access then there'd be simply one world. Perhaps if we we understood equity as access then s barrier-free world would also be a fully inclusive one.

Privilege and power and opportunity are the things which draw borders around our existence. They are the 'holy trinity' of prejudice. They are the sharp blades used to slice one planet into many worlds. Maybe that's what I need to be thinking about this year. Maybe I need to be as dedicated to the idea of 'one planet, one people, one world' as I am to the struggle for inclusion 'for me' and 'for those like me'. Maybe all of us need to use the word 'diversity' to mean 'diversity' rather than how it's typically used - to mean more than simply 'me too'.

I still remember Ruby's little brow furrowing as she asked a second time, 'Yeah, but what world do we live in?" She must have been confused at my answering by pointing to lines on a map rather than to the true borders which separate us all. One planet, one world - that's what children want.

And that, is what I want, and what I wish for.

It won't come in 2012.

But maybe if we try, it can come closer.

The 'DisTinctives': a Year End Review

2011-12-31T00:09:00.049-05:00

This year I intend to start a tradition at Rolling Around in My Head. I've crafted the soon to be coveted 'DisTinctive' awards which acknowledges, in my opinion, the best of my experiences this year from a disability perspective. From Art to Hostelry to lack of Hostility, we cover them all. So here's my own personal, and highly subjective, year end awards round up!

And The Award Goes To ...

Best Depiction of Disability in Art: Opera Australia's Rigoletto.

I was stunned by the portrayal of Rigoletto, I did not know the story and hadn't ever seen a performance. However, the use of disability to demonstrate prejudice and oppression was quite astonishing in this production. I was really, really moved. I was thankful to be able to see that in one of the theatres here in Toronto.

Best Use of An Assistive Device in a Movie: Spy Kids 4

This movie received horrid reviews and did poorly at the box office. However, we took Ruby and Sadie to see this while their Mom and Dad went to see Fright Night. The kids loved it. I was really taken by the use of disability and an assistive device in the plot - it was positive and cool. I'm not going to tell you exactly what happened because I hate it when people do that. No spoilers here. All I'll say is that it gives you a way to talk about disability with kids that is cool.

Best Book With A Disability Theme: The Secret Scripture by Sebastian Barry

I'll admit I'm only part way through this now and I could end up regretting this but I'm entranced by what I've read thus far and it has a discussion about institutionalization and abandonment that is heart rending. I'm in love with how it's written. There were many choices this year, rah!

Best Art Show Regarding Disability: Shifting Perspectives Dublin Arts Council

I know that this caused some controversy within the disability community, but I liked it. I found it moving and I found the images wonderfully captured the spirit of the young people portrayed. I was born into a world where people with Down Syndrome were never seen. I worked in agencies where no pictures could ever be taken of those in care. I walked graveyards where headstones had case file numbers - not names. I liked the out and proud feel to these photos.

Best Artistic Contribution by Someone with A Disability: Days To Recall by Justin Hines

I love Justin's voice and, on top of that, I've met him and he's truly a lovely man. He was generous with his time and exceptional at meeting and speaking with people with intellectual disabilities. I saw him again at the Christian Horizon's Christmas banquet and he was terrific. I hope he has a long and prosperous career.

Best Accessible Accommodation This Year: Carrog Mill Cottages

I've written about my stay there and though I had many hotel stays over the year and many of those stays were lovely, nothing came close to comparing with the experience in Wales. I already long to go back. I got more than rest there - I got something much, much deeper.

Best Customer Service from a Disability Perspective: Air Canada

My experiences with Air Canada this year, again, were astonishing. I find them helpful without being condescending. With the exception of one staff, no organization is perfect, we found everyone willing to assist and to make things run smoothly. They actually treated us as valued customers and were even able to anticipate issues and deal with them for us.

Best Resolution of a Customer Complaint: Roy Thomson Hall and Toronto Symphony Orchestra

You all know I'm a letter writer! I found my experience with how may complaint was handled by Roy Thomson Hall and the TSO really positive. They responded quickly, they didn't deny or explain away the complaint, they took my concerns seriously, they took steps to ensure it not happen again. A bad experience can be made better!

Most Accommodating Restaurant: Ellen's Stardust Diner

I don't really fit into this restaurant, it's so busy and so popular that without the willingness of staff to make it possible for me to get in and get seated, I'd really not be able to go. I love it there though and it's part of my visit to New York City every time. And every time I go, including this year, they are wonderful at making sure I'm welcomed and included.

Most Disability Friendly Service: B.C. Ferries

Wow, did we get stand out service from the B.C. Ferries. We arrived, they give us this little yellow card to put in the car and the folks who load us do an amazing job in getting us near an elevator and with room to open the car doors. And, on top of that, they do it with a smile. I was truly, deeply, impressed.

Most User Friendly Disability Accommodation Service: The ADA Help Desk at Marriott

When you call up, if there is any question about accessibility or if you have a personal need that needs adaptation, the Marriott hotel chain has an ADA desk where they will contact the hotel, double check for accessibility for you and confirm it with you. They even give you the name of the staff they spoke to so that you have a reference point at the hotel itself. It takes the stress out of travel.

Most Friendly and Efficient Service Staff: Wheel Trans by TTC

To be specific I'm talking about the Wheel Trans bus drivers who work for the TTC. I find them typically nice, friendly and really desirous of providing a good ride and a good experience. They have to deal with traffic and tight travel times and even so, they deal with those frustrations really professionally. I enjoy my morning rides with them and appreciate what they do and how they do it.

Well that's it. I'm sure you all have your own personal awards, let me know of them, let me know what I missed. I had fun just reflecting over the best of last year. I chose simply to acknowledge positive experiences, I want to go into the New Year celebrating kindness and exceptional experiences and amazing service.

The Talk

2011-12-30T00:01:00.007-05:00

Do the math:

Two fifty nine year olds plus three days plus one five year old equals total exhaustion!! Wow. Right now Joe is driving Ruby up to meet her Mom at her Aunties place, I am sitting in an apartment which is very quiet and really empty. How can someone so small make so much noise and take up so much space and devour so much energy? Further, how do parents do this every day!?! But her visit here was a real gift to us and we enjoyed every minute of it. We know she did too because she had to give us three hugs, plus two, before she left, then she asked when she was coming back again. So that points to a successful trip.

I think it was successful because we organized ourselves and activities with her in mind. It was easy to do this as we have control over our time during the holidays and, it has to be said, I'm a planner. It's no surprise that I ran summer programmes for kids over three summers in my youth. I liked it then, I like it now. But the biggest part of the planning needed Ruby's involvement, understanding and active consent. It was about safety.

Our biggest worry about taking care of a five year old child was due to the fact that I'm a wheelchair user and Joe has really bad knees and one really bad foot. Neither of us are agile enough to go running after a child. This makes us less than perfect choices to be child minders. We've set a kind of relationship with Ruby that we would only have rules that made sense - no arbitrary use of the adulthood's power here. Further, we have made sure over the years that Ruby was consulted on things that had to do with Ruby - we wanted her to have a voice and use it. So, with that groundwork laid, we had the talk.

I chose a moment just after Ruby had had a lot of fun and had been laughing at our antics. I asked her to come and sit down in the office chair because we had to have a talk with her. I chose this moment because she knew we'd all been laughing so she'd know, automatically, that she wasn't getting a 'you're in trouble now' talk. She sat down and looked at me seriously. Joe had come in and joined, we had planned this moment and he had waited for the cue.

I spoke to her very seriously about the fact that we were all going out together that morning. I talked to her about my being in a wheelchair and Joe not being able to run fast. We talked about safety and about how people only have fun when they feel safe. So we then talked about what would keep her safe and what would make us happy. In the middle of this she piped up and said that she once got lost in a mall for a few minutes and she was really scared until her mom and dad found her. This was perfect and a great contribution to the conversation. So we prepared for the subway and for crowded stores. She agreed that she'd either hold Joe's hand or the arm of my wheelchair. She agreed that at other times she would always be in our sight and never far away. Those were the rules. Simple rules.

I asked her if she understood and she said that since I couldn't run after her and because Joe had bad knees she had to help us take care of her. I knew from that answer that she understood. And it showed in her behaviour for the whole trip. We only once had to call her back but, even then, she wasn't far and she listened immediately. During the whole time being together we all cared for each other. She knew that we wanted her to be safe, we knew that she wanted to be helpful. It worked.

Being upfront with Ruby about my disability and about what we needed was easy to do. It was easy because I don't see my disability as a negative, never to be discussed, but as simply being a fact that needs to be considered. I didn't present my disability as something bad, just something that needed to be adapted for. She understood her place in the scheme of our relationship as one of being both a child and as a partner. The child could laugh, play silly games, make funny jokes while the partner took responsibility for following a couple of rules and keeping herself safe by being alert and aware. I think she liked the responsibility, I think it made the fun more fun and the silliness more silly.

Now, I'm going to slide into the silence and take a nap, maybe two.

Decisions

2011-12-29T03:55:00.004-05:00

I went to bed without having written today's post. That's unusual because I try to have it written so that it publishes just after midnight. But I was having a difficult time deciding what to write. After all, we'd had a nice day. We'd gone to the Nutcracker, we'd stopped at the Hudson's Bay Christmas windows on Queen Street, Ruby invented the 'pizza sandwich', all things we will remember. All, and each, could spin into a nice post. But my mind kept returning to an incident which was frustrating and bothersome. I really don't want to have a blog wherein I focus on the negative experiences that accompany disability. There are so many positives, life is made up of more than rude people on elevators - but then, on rising this morning, I decided I really wanted to tell you what happened. So, asking for your forbearance, here goes ...

We left early, thankfully, to go see the Nutcracker. Ruby likes riding in the front car of the subway so she can watch us go through the tunnels. It's a small concession to make so even if we had to miss one train as we made our way to the front, so be it. I've never understood people who get impatient over a few seconds or a few minutes. Rarely is anything quite so important that a second or two really matters. Anyways, we rode to Osgoode station. It's perfect for going to the ballet because one of the station's exit is the hall itself. We disembarked and headed for the elevator.

On arrival the elevator had a sign on it saying that it was out of order. Panic!! What to do? Oh, there's a notice on the elevator. That surely will be helpful. It wasn't. It told us to use the stairs or the escalator. The elevator was covered with Blue Wheelchair Guy symbols, and the sign told us to use the stairs! I pushed the call button and spoke to an attendant who told me to use the stairs. I told him I was in a wheelchair. He said, 'Well, the elevator is down, that's the way it is.' Oh. OK.

Now get this. I know I should have checked the TTC website because they have information on elevators that are not working. But, I forgot, that's my fault. So if I was to be angry, it's at my own lack of preparedness. But what bothered me was the freaking sign. I mean, they know that the elevator is for access right? They must because the elevator is festooned with the blue symbol. So why couldn't they have given wheelchair users options like: travel north to Queen's Park or travel south to Queen Street to find the nearest accessible station. Instead, I had to find a map, look for accessible stations, the next north and the next south aren't accessible, then figure out which might be the closest. I figured either Queen or Queen's Park. I chose Queen's Park but I think I might have chosen incorrectly.

Joe and Ruby went up into the hall and I took off on my own. We were early enough for me to make it on time. Nothing hugely horrible happened. I just kept asking myself who they thought used the elevator, why they couldn't have given those with disabilities some consideration in the signage. Maybe they thought by telling us that we'd have to travel a fair distance away, we'd notice the inaccessibility of the system. Um, we know! Or maybe, and this is most probably true, they didn't consider us at all in the signage. Maybe we're just an afterthought. I don't know.

Now I have choices. I've told the story, I've got it out, I know I've got to contact the TTC and ask for appropriate information on their notices. But then, I need to shove that memory aside, I've got to remember, instead, Ruby slapping my arm while pointing to the stage when the Sugar Plum Fairy made her spectacular entrance. I've got to remember her laughing and screaming, 'There's Rudolph!' while looking at the Bay Christmas windows. I've got to remember pizza sauce shooting out of her pizza sandwich. I've got to remember those things - not a thoughtless sign on a broken down elevator. This is my life and my memories, I've got to choose to fill the well, from which I will draw when old, with sweet water, not bitter.

The Straw

2011-12-28T00:07:00.001-05:00

It's been a rough day.

We went out with Ruby, wanting her to see some of the Christmas displays. In particular we wanted to show her the giant reindeer that have overtaken the Eaton Center downtown. These may comprise the most beautiful holiday decorations that I have ever seen. I was awestruck when I first saw them. Ruby was prepped to go and see them and we, excitedly, took the subway down to the mall.

We waited for the second train so that we could get into the first car so that Ruby could look out the window and watch us travel through the tunnels. I'm nearly 60 and I love watching too, so just imagine what it would be like for a little girl unused to subway travel. She was thrilled. Joe and I had a checklist of things to do and things for her to experience, the subway was first on the list and then we began.

But my. Oh my.

It was tough. It seems that the 'spirit of the season' evaporated overnight. The mall was busy to the point of manic. We had difficult accessing ramps, people didn't want to wait for me to use them. Joe had to stop the flow so that I could get from level to level. I could see Joe tensing up. It's difficult to have to ask people to allow what they should offer. But he did it keeping good spirits.

I kept trying not to notice people's annoyance at my passageway through a crowded marketplace. I could see the effect on Ruby, too, and it made me angry. I don't want my frustrations visited on her. I don't want her to ever have to think 'oh, if Dave just wasn't in a wheelchair.' And I'm afraid I lost it. We had waited for the elevator. The Center doesn't have enough of them, and it always surprises me that people, who have the option of the escalators just off to the side, line up for the elevators. I know that they have glass walls and the view is wonderful. But really.

We'd waited for several elevators and Ruby was getting tired. Finally, the elevator was clear and Joe and Ruby hopped on. A large family arrived and started pouring on before I could get on. I actually said, 'Hold on I was waiting here long time, my family is on ... can you let me get on.' They didn't. They got on and looked at me with defiance. Joe and Ruby had to step off. As the door closed, I said, with some venom, 'That was really, rude and really, really, mean.' Ruby stood there trying not to cry. We had to explain to her, because children take on themselves what they don't deserve, that the reason we didn't get on was because they jumped on ahead of me. She actually thought it was because she took up too much space.

My heart broke as we comforted her. By the time the next elevator came, we got on easily. It turned out a fellow had seen what happened and he stood guard ensuring we could get on. We thanked him, he spoke to us with an accent so heavy it was hard to understand, but his eyes ... his eyes we all understood. They were almost militantly kind.

Later when Ruby talked about the elevator we reminded her of the man who held people back so we could get on. That's what we want her to remember. Not my anger. Not the reason for my anger. She's five. She's our guest. She's here to have a good time.

But I was exhausted by the time I got home.

I realized it took energy for me to be constantly patient. But that burden was just too much when barriers, physical and attitudinal, were placed on her tiny shoulders. That extra weight caused a small break in my heart.

I wonder, from other, is that true for you too ... it's easier to bear these things when it's just you - but when it affects those you love, it's tougher still. I'm guessing that's a fairly universal reaction. But I'd love to hear ...

The Questions Begin

2011-12-27T07:29:00.001-05:00

Right now. Right this minute. I'm sitting at the computer, composing this blog post. The apartment is very, very, quiet. Ruby is fast asleep in her room. Joe is snoring quietly in ours. We didn't get to bed until very late, plans had changed at the last minutes as they often do and we ended up meeting Marissa in Kingston and Ruby switched cars. It was like she switched gears at the same time. An energy bomb went off in the back seat.

We heard Christmas songs. We answered, wrongly as it turned out, the question, 'Do you want to hear how loud I can scream now?' An unending flow of words came from the back. Joe and I looked at each other, I could read his thoughts, 'She'll be asleep soon.' She wasn't. But gradually the noise began to become quieter and the Ruby who loves to chat abandoned the songs and the loud noises and the silly games.

And it became the Inquisition.

Why do we live together?

Does Joe have a job?

Why do we call each other 'dear' sometimes, like boys call girls and girls call boys?

Do our Moms and Dads know that we live together?

These questions were surprisingly easy to answer. I believe that if children are old enough to ask a question, they are old enough to get a serious answer. We gave simple, clear answers. Avoiding detail and information that is meant for an older more sophisticated child. We knew already that Ruby is fascinated by 'relationships'. She understands cousins and uncles and aunts and grandparents. She loves to see how people are connected to each other. So we explained everything within that context. She had a surprisingly easy acceptance of the fact that families could be formed by love and choice. In fact, she thought that a really, really, good idea.

After getting home, she was sitting in the office chair, I was in my wheelchair and Joe was sitting on the edge of the big chair. We made a very small circle in the office area of the apartment. She was eating a fruit cup, I was having a tea, Joe was sipping on a cold beer. It had all fallen silent fora moment. She looked up and said, 'How come everyone is so quiet.' I said, 'Cause we're just enjoying being together.'

She got a sly smile and said, 'Like a family.'

The kid does listen.

I wish more people did.

A Note from Me

2011-12-26T04:49:00.001-05:00

Hello folks!

Here in Canada, it's Boxing Day, and we get another day to relax after the rush of the holidays. So, I'm taking it fairly easy. We have Ruby coming to be with us for a few days, we'll be going to the Nutcracker and doing some other fun stuff. The whole thing is planned out. We're looking forward to her visit like you wouldn't believe, she's a lot of fun to be with.

On another note, I have a favour to ask of you. Rolling Around In My Head has made it into the finals of the Canadian Blog Awards. I am very pleased and thank those of you who voted in the last round. I'm a bit confused about how this works as they'd announced that for the final round, it's possible to vote every day and I haven't found that to be true. But I've written them a note for clarification.

In any event, I'd love it if you could take some time today to vote for this blog, you do not have to be a Canadian to vote. It's up for the two biggest awards, Best Overall and Best Personal. You vote by clicking here and then it's a bit tough to find. There is a list of finalists and it's after that list. You click on the category and then vote.

I'd like you to also consider Belinda's blog which is up for Best Religion and Philosophy blog and Shannon's blog which is up for Best Blog Post. The link to read Shannon's post is there on the site.

I know it takes a few minutes of time to do this and I appreciate that it's a bit of a bother, but, I hesitate to admit, I'd like to see Rolling Around In My Head get an award again this year. I receive a lot of hits and a number of regular readers who find me on their website. So, please and thank you.

See you tomorrow with a regular post!

A Time To Talk About Babies: A Christmas Blog

2011-12-25T00:01:00.004-05:00

I remember the first time 'I' held a baby.

By then several babies had rested in my arms, but the first time 'I' held a baby was quite different. There was a time when all gay men were considered to be a danger to children. In that time I was not, 'I' or even 'I' identified. I was 'Dave who kept secrets' and 'Dave who wanted approval' and, even, 'Dave who was ashamed of the truth.' So when I held children then, I had earned trust by pretense. I had misled people who I knew, and I turned out to be right, would never let me, the real me, into their lives if they had actually known me.

Like many gay men of my age, I became terrified of being around children. I knew that children were in no danger in my care, but the world didn't. The media, the churches, the police always seemed to be banging on about 'molesters' and 'they recruit because they can't reproduce'. So, I stayed far away. I must have appeared cold to parents who encouraged me knowing, or not knowing, to interact with their children. I didn't. I wouldn't. Pity was, I enjoy the company of children - I enjoy listening to what they have to say. But I ensured that I was never alone, never in a position where someone could say something vicious and destroy my life. I hated people a lot back then. I hated them for lying about who I was, who other's like me were. I hated them because I knew, they knew, they were lying. And they didn't care. Their lies gave them power.

But then .. I went to visit a friend who had adopted an infant girl with Down Syndrome. She brought her home from the hospital. I visited her only a day or two after the wee one had come home. I sat in her living room and watched her bring the child out. She cradled her as she spoke to me about what this meant to her. About the life she was choosing to undertake, about the road that she had willingly placed her feet on. She asked me to hold the baby. I got nervous. She knew who I was. She knew the life I led. This was an offer that told me that she trusted me, that she knew the 'truth' was a 'lie' ... and that her little girl would be safe in my arms.

So, I held her.

'I' held her.

And I looked down into her eyes and I knew, just knew, at that moment that this little girl, the one in my arms, had a long and difficult road ahead of her. She was born into a time of institutions and segregated schools. Shew as born into a time where others predicted hers would be a meaningless life. Others predicted that every step would be a struggle, every attempt would end in failure, every joy would turn to ash. And I knew, just knew, that in that baby rested something powerful. I held potential. I held words that would one day be spoken. I knew I held dreams that would one day come true, I knew I held a girl who's heart - like mine - was different, but who had a heart - like mine, that worked.

She was held by me.

And I knew that she could feel my fears for her. I knew that she could feel, somewhere inside of me, a knowledge that she would like me be teased, mocked, bullied. I knew that she could feel, the the pace of my heart, the worry that she will have others predict, wrongly, what life would be - my life, my life of love and purpose and value - was not supposed to have been - they said people like me didn't love, or didn't have relationships, or didn't live lives of meaning -she knew I knew that they'd say the same of her. I knew that should could fee my fears and worries. But I also wanted her to feel, in the warmth of our contact, strength. I wanted her to feel my belief in her, and in her capacity to grow, and in her determination to be all that she is and can be. I wanted her to feel, in the first time that she, an outsider, was held by me, an outsider, that there was hope and love and community.

I held a baby.

I remember the first time I held a baby.

By then I'd held many.

But the first time I held a baby after becoming a wheelchair user. After becoming attached to wheels. She was placed in my arms and I was told that her name was Ruby. She woke, only briefly as she switched from mother's arms to mine. Her eyes met mine. Baby's eyes are unworldly eyes - they looked at me, and saw me. She slept a bit and then when she woke, and her eyes were caught by something. I followed what she was looking at and I saw that she was watching the light as it played and danced and sparkled as it hit the chrome of my wheelchair. She giggled.

And I knew. I knew that she would grow up to understand difference, and enjoy it. I knew as I felt her in my arms that I was no longer an 'outsider'. That this little girl would grow to know me, all of me. Me without the masks, me without the need for pretence, me. She would see the wheelchair and the weight and the heart that loved differently and she would know, somehow deep in her soul, that I had held her, and that she was safe. Safe then, safe now, and that my love would always be a refuge for her.

I remember the first time I held a baby.

Ever.

When I was a boy, I attended Sunday School in a small United Church. The school was held in the basement and one Christmas they set up a Nativity display for all of us. My Sunday school teacher was standing talking to one of the parents with the baby Jesus tucked up under her arm. He looked uncomfortable. She called to me and asked me to place the baby in the manger. I took him and carried him with exaggerated care. I didn't want to be responsible for breaking Jesus. As I laid him in the manger I wondered to myself, 'Is this what it's all about?'
It wouldn't be for nearly 60 years before I could answer that question with certainty.

"Yes."

How To Wrap A Present

2011-12-24T00:16:00.001-05:00

Bobra, a friend of mine, sent me this clip, suggesting that if you don't find this funny, you're dead. Luckily, I found it funny, so the diagnosis is ... I get another day! I've been busy today getting things done and will be rushing about tomorrow. So, I'm giving you this as something you might want to watch.

I will be posting tomorrow, Christmas Day, so please drop by if you've got time.

Enjoy.

Three Little Words

2011-12-23T03:38:00.003-05:00

We were having tea. Somewhere I read a study that showed that just holding a cup of tea in your hands results in a sense of comfort and increased well being. I don't know if this was a 'faux science' thing or a real study, but nonetheless, it was certainly true for me that day. The regular tea shop guy wasn't in and the shop was managed by his son. We've met all of his kids over time and they are all part of what is clearly a close family. The young guy serving us that day is probably in his late teens, early twenties. We arrived as he was saying a fairly passionate 'goodbye' to his girlfriend who was on her way out shopping.

As we were having tea, his father called and we heard him talk to his dad about the store and he answered a couple of questions. Just as he was hanging up the phone he said, and not in a whisper, 'Love you Dad'.

***

When we were in the UK we found a Christmas ornament that looked exactly like a dress that only a drag queen would have the balls to wear. I loved it. I immediately thought of a fellow who runs a shop near us. We were a bit surprised, one day, to find out that the nice young woman who works there was his daughter. Later we found out, and met, a number of his kids. He is about our age and, during his youth tried to deal with his sexuality by marriage and procreation. He came out late and he came out big. We picked up the ornament and stowed it away. A couple days ago we took it over to the store to give to him. He loved it. His daughter grabbed it immediately and they began a friendly tussle over who's tree got the dress. Somewhere in there, he grabbed her and kissed her cheek. She said, 'Love you Dad'.

***

A few weeks ago, we were sitting waiting to take a flight. An older couple were sitting with their daughter who was, like the fellow in the tea shoppe, in her early twenties. They were all 'the subject of glances' (which would be the title of the autobiography I'll never write). The 'eye magnet' was the fact that she had Down Syndrome. They were all clearly tired. It was an early flight and as a result the boarding are was both full and quiet. She was leaning up against her Dad. He was reading a book. Just as she was about to nod off he said, in a stage whisper, 'No snoring, OK, I'm trying to read.' She looked up at him and giggled. Mom smiled. She said, 'I don't snore like you do, you wake up the trees!' They laughed. She said, 'Love you Dad.'

***

For those who are tired of 'Christmas Stuff' right now - stop reading and make what you will of the above!

For the rest:

This has always been the season of 'Madonna and Child' ... of 'Silent Night' and 'Ave Maria'. But, always, somewhere through the season and the retelling of the Christmas story, I think of Joseph. Of that guy who trusted the word of a young woman with a strange story to tell. Who was the first to believe - simply on faith - in the Christ child. His love was necessary for their survival. His love is maybe the most surprising aspect of the entire tale. But, I never hear of Joseph. Ever. Culturally, I rarely hear much about men who love well their children. But, every now and then, I get reminders, like ornaments on my emotional tree, that the human heart is simply the human heart. That love is a universal possibility. That my heart, a man's heart, can rise to the challenge of love.

Joseph sits quietly, at the sideline of the story. Simply satisfied, like no one can imagine, that that little baby will one day say, 'Love you Dad'. And that's enough for him.

(Image of Saint Joseph holding his son in his left arm while his right hand holds lilies.)

A Gift From My Computer

2011-12-22T00:02:00.002-05:00

You know what I did on my birthday?

I saved it up to do it on that day specifically. This will tell you what a dweeb I truly am. I did the on-line training that is required due to the AODA (Accessibility for Ontarians with Disabilities Act). You have to do the training, answer some questions and then you get a certificate if you passed.

I passed.

This isn't a huge achievement as the questions are pretty basic. What interested me though, and the reason I wanted to do this on my birthday, was the sense of celebration I had in reading through the training and seeing what the act intended to to. This portion of the act is about customer service, and it did really seem to focus on treating people with disabilities with dignity and respect. I had a few concerns with it, but they are minor and not the point of this blog. However, I liked the fact that I knew that all over Ontario people were being required to read some basic information about how to treat people with disabilities.

They got a lot right.

I read most closely, of course, the sections that were regarding those of us who use wheelchairs and other mobility devices and the section on people with intellectual disabilities. For the most part the writers of this did pretty well. The personal space thing was amazing and really, really, well stated. It seemed like a birthday present just to know that countless people will be learning that my wheelchair is part of me and resting their hand on my chair is as inappropriate as me using their belt as a hand hold. Rah! Rah! Rah!

After my experiences over the last few days I was feeling a bit despairing (did it show) but this did bring my spirits back up a bit. Maybe, just maybe, it's gonna get better.

And you know what I got for my birthday?

The computer gave me a certificate showing that I'd taken the training and passed. I got 100 percent of the answers 100 percent right. And, a certificate is a certificate, I ran out two.

Why the bounty? Whey the excess?

Cause what the hell, it was my birthday.

Today

2011-12-21T00:01:00.019-05:00

Today is my birthday.

Today I get to go to a job that I love.

Today I get to enjoy all that I love.

Today I get to live with a man that I love.

Today I get to unwrap another day.

Today is my birthday.

Today I get to open my eyes to a day

where I am excited to look to the future.

Today I get to open my eyes to a day

where I am unafraid, blessed be, to look to the past.

Today I get to open my eyes to a day where

I expect joy, as I expect joy, everyday.

Today I get to open my eyes to a day

where I get to open my eyes.

Today is my birthday.

Today I can fight another battle.

Today I can strive to be a better person.

Today I can live a little 'righter'.

Today I can pray a little more deeply.

Today is my birthday.

Today I get to be thankful.

Today I get to be thoughtful.

Today I get to be grateful.

Today I get to be cake-ful.

Today is my birthday.

The shortest day of the year.

The longest night of the year.

The coldest evening.

The brightest morning.

Today is my birthday.

And though I had nothing to do with it.

I'm mighty pleased, at the privilege of having another one.

Yes.

Indeed.

Today is my birthday

And Again

2011-12-20T00:19:00.006-05:00

Sometimes I wonder about why I write this blog.

Sometimes I wonder about the repetitiveness about the experience of living with a disability. Of dealing with, not the disability, but the issues it brings with it. Little did I know when I sat down in a wheelchair that my world had changed so dramatically. I imagined that I'd have difficulty adapting to rolling, to curbs and to barriers. That, surprisingly, was dealt with within days of being disabled. I became used to adapting, planning, looking for alternatives. I became used to back doors, back alley entrances and hidden passageways. I became used to marking both places where I was physically welcomed and places which simply were no longer part of my world. I became adept at living that life, learning how move anew in this world. These frustrations are part and parcel of what it is to move differently. I want change. I see change happening. I knew that I'd need new skills, both of mobility and of flexibility. I've written often of this. I fear boring you.

What seems to be so incredibly repetitive, and remarkably frustrating, is the million ways that people and systems create barriers. That planning, even meticulous planning, is meaningless when people don't listen, or rather when they pretend to listen and then just don't do what they promise to do. Hotel rooms booked as accessible turn out to be completely impossible to navigate. Restaurants who claim accessibility but the toilet is down a flight of stairs. Stores with an accessible till that is rarely open. Even phone calls and chats with real live people don't guarantee anything. I have learned to mistrust. Completely mistrust the word of non-disabled people who talk to me of accessibility.

The incident behind this is what happened this weekend at Roy Thomson Hall. We went to see the Messiah and I carefully called, as instructed to do on their website, and booked an accessible seat. Everything should have been OK. We pulled up in front of the building and a Hall staffer was there as I got off the bus. She said she was there to ensure that we got to our seats OK. When she realized we had to pick up our tickets, she directed us to the Box Office and said she would meet us inside. We got our tickets, impressed at the seeming willingness to be of assistence.

That ended soon.

I handed her my ticket and she said that we weren't on the 'wheelchair list' - God how I hate being referred to as a 'Wheelchair'. I told her that I had booked accessible seating and she said, 'Oh, really?' I was immediately miffed. I didn't become disabled yesterday. I've been booking accessibility for years, I know how to do this. Well, we weren't on the list so the seat hadn't been removed. She knew I was upset and she pointed us to the elevator and told us the seat would be removed by the time we got there.

It wasn't.

The woman overseeing that area went off in search of someone to take the seat out so I could get in. She hadn't been told of me either. The fellow came and I actually apologized to him for bothering him. He wasn't rude but he wasn't nice about it either. Clearly he was disturbed at having to do this for us. OK, I don't know how to make this better.

It got worse.

I asked where the accessible washroom was on my level. There wasn't one. To get to the washroom, I'd have to go all the way back to the elevator and go down to the main floor. It had been made very clear that people who were late would not be allowed in. I asked if it were possible to make it to the elevator and washroom and get back during the fifteen minute intermission. The woman thought for a second and said, 'Probably not.' I then asked if I was delayed because the bathroom was so far away (versus the washrooms for the non disabled which were just outside the door entering into our section), would I be allowed in. She said without hesitation, 'No.'

Oh.

So I went to the washroom just before it was time to take our seats. Then through the whole first session I worried about having to go pee at intermission. I worried that I'd make it so Joe would miss the second half. I worried myself into having to pee. As soon as the first half ended, I turned to the door, I usually wait for people to leave so I can get out without an audience, but I was at the door and Joe opened it for me. We raced to the washroom, waited for one to come free, then raced back upstairs. We made it with a few minutes to spare. I realized then, I just wasn't having fun.

Great.

It took a strength of will to focus on the music and the surroundings and simply forget about the first half and the worries that came with it. Forget having booked seats carefully and then arrived to find the promised seats not made ready. Forget the fact that people treated me like I ... was a liar ... was upsetting their routine ... was more bother than I was worth. Forget the fact that I was being held responsible for their poor planning, why would you put wheelchair seats and accessible washrooms so far apart? Forget that I'd worried all through the first act. Forget that I'd become unpleasant and difficult with the staff. Forget all that. It took an effort of will and sheer bloody-mindedness to focus simply on the music and the message within the music. But I did. Joe did.

This. This is what I'm having trouble getting used to ... having to rely on others to do what they say they will do. To expect simple, decent treatment as a customer and get something much different instead. To deal with people who have the power to make decisions over things as basic as my bladder, who seem to love wielding that power. To lose my anonymity when I arrive and have to have a fuss made about what should have simply been there.

That's the difficulty.

Those are the barriers that upset me.

And I get tired telling the same story over and over again.

But I have to.

And I thank you, deeply, for listening.

FYI

2011-12-19T04:25:00.000-05:00

At Vita Community Living Services, the clinical team which I oversee, is trying to use our resources more effectively. As such we have begun writing short articles on timely topics and sending them out to staff. We figure if we can get information to our staff that we may then provide better care and, in doing so, reduce crises. We also sent these out through Ontario on a provincial mailing list. However, I've had several emails from outside the province from people who'd heard rumours about the resource and asking for a copy. So, if you would like to see the two we've done up ... both on the theme of supporting people with disabilities through the holidays, just drop me an email at Vita and I'll send them out to you.

dhingsburger@vitacls.org

Today's post follows.

More on Yesterday

2011-12-19T00:29:00.002-05:00

I rarely do this, but I'd like to now. I'd like to pick up, in a blog post, a thread of the conversation that was happening yesterday. I really liked the thoughtful, and tremendously kind, way that discussion went. There was something else though, that I've been thinking about regarding what happened at the museum and why I didn't, as many of you noted, just speak up at the time.

I think that, after a brief bit of discussion, the whole thing would have been settled.

But, if I'm being honest, the reason I didn't speak up wasn't so much because I was tired. Though, I was, indeed, tired. I think it was because 'sometimes a museum needs to just be a museum'. Joe and I hadn't been to the place since we went to the UK and we were looking forward to just going there together. Since we got back we've been doing things for work and things for other people and things that needed to be done. We enjoy our lives and we enjoy the tasks set before us, but we also enjoy just going out and being together. Our trip to see the Mayan exhibit kind of fell into that category for me.

So, when I spoke with the woman, asking her the question I had in mind and when she used a word that, to me, is outdated at best and offensive at worst, I had a choice. I saw Joe, out of the corner of my eye just happily looking at one of the artifacts on display. If I chose to bring up 'language' at that moment, I knew that I'd see his shoulders tense up. I knew that the whole feel of the afternoon would change, not so much for me, but it would for him.

Sometimes it has to be about him.

Joe doesn't know I'm writing this, he'll read it in the morning (hello Joe) and I know he'll tell me that he wouldn't have minded me speaking up. I know that he fully supports the work that I do and the voice that I have. I know that he's developed his own voice and tackles the situations we face in his own way. I know all that. But I didn't want him to have to 'not mind' - does that make sense?

Maybe I did it more for me than for him. Who knows? All I know was that I passed up an opportunity I had to have a, probably minor, confrontation because I wanted Joe and I just to be a couple at an exhibit.

Perhaps it was the wrong choice.

I wonder if any of you, in consideration for those you are with, ever just let something slide. I'm sure you have, at least once or twice, so tell me ...

WWRD?

2011-12-18T00:09:00.003-05:00

So, in my quest to find out What Would Readers Do, here is a question for you:

Joe and I went over to the ROM (Royal Ontario Museum) to see the exhibit on Mayan culture. I joined the ROM after moving to the city and we get our money's worth. We like the place. We visit often. It's a combination between two buildings, one old, one new, so it's a bit tricky to navigate in a wheelchair but, for the most part, I get to where I want to go.

As we arrived just at lunch we went down and had a bite to eat and were in high spirits and ready to see the exhibit. The ROM does know how to put on a show and we were really enjoying the displays and the information posts were actually interesting. On going through I began to notice something, to me, interesting. There are several carvings, representations, bowls and whistles that had images of dwarfs. At first I thought I might be imagining it, but after the sixth or seventh image, I became curious. I saw no mention of them and what they might represent in Mayan culture anywhere. (Now realize, I didn't look at absolutely every written description, I could have missed it.) However, when I saw a ROM employee talking to some people, answering questions and the like, I approached her.

She said that she was indeed with the ROM when I asked her if I could pose a question to her. She said that she would try and answer. So I mentioned that I am interested in disability history, art and culture and as such I noticed that the image of dwarfs and wondered why that was. What was the significance, and by the preponderance of images there must be a significance, to the Mayan people? She looked very uncomfortable at the question and then she started talking about dwarfs and "crippled" people as perceived by various cultures. My face must have registered shock at the use of the world "crippled" but she carried on, using the word two or three more times. I felt no hostility from her, just deep discomfort at the question (or the question asker, I'm not sure) so I just listened to her, not stopping her and correcting her.

I don't know why I didn't say anything. I didn't have a good sleep and was tired. I didn't have the energy for a confrontation. I just didn't and after having left, regretted not having done so - I think she would have been receptive.

Now, here's the question, should I just let it go, or is it letter writing time?

I know that it's important to pick your battles. But I also think that if the institution gets involved one of two things will happen - one is that they will just send a polite note thanking me for my feedback, two it will grow out of proportion and the woman will get a severe reprimand when all I want is someone to say, "Hey, you might want to use the word 'disabled' rather than 'crippled'."

So ... I'll do what the majority of people want me to do.

How's that for sloughing the decision making responsibility off my shoulders and on to yours!

What The Barber Said

2011-12-17T03:15:00.000-05:00

Joe was getting his hair cut. Our barbershop (oops, salon) is tucked away in the corner of a huge department store near us, so I went shopping. I picked up a couple of things and then came back to wait for Joe. We both have the same barber, who was working alone in the shop, so I pulled in the entrance way beside the counter. We were all chatting and laughing. In a flurry of energy a woman arrived, announcing that she had a noon appointment and demanding to know where the 'stylist' was who she had an appointment with. Our barber said that she'd be in momentarily.

With a frustrated flourish the woman threw herself on one of the chairs. She stated that she didn't have time, that's she's too busy to even wash her hair, that the stylist should be respectful of the needs of customers. It was five minutes to noon. Then after loudly complaining about waiting, she announced that she was going to go and return some nylons in the store and she'd be back. The stylist had better be there or there's be 'hell to pay.'

After she left, the spirit lightened for a moment - like a malevolent spirit had been exorcised, and our barber said, "Wow, it makes you wonder if people ever think about the impression that they are making on others." I said, trying to be nice, "Well, she did seem stressed out about time."

Instantly our barber responded, "What, and being patient and understanding takes time?"

That statement has stayed with me ever since he said it.

I realize that I sometimes blame time for the choices I make, the way I react, the shortness of my temper. I don't know a single person, not one, who doesn't constantly say that they are wildly busy. And not just during the holiday, year round. So, in effect, if one is rushed every day, then it isn't 'busy' it's 'normal'. Perhaps we've all, societally, come up with an excuse that is convenient to explain away the loss of manners and the increase in selfishness. Perhaps our 'i' products - phones, pads, pods - are well named. It's all about what 'i' need, what 'i' want, what 'i' expect. If I am the only important person in the room, then what the hell do I care about what U think (sorry, I don't have time to type out 'you' lol). And besides, U is twelve letters down the line, and 'i' is frustrated at having to wait for the eight in front.

So, I'm going to be careful with time.

I'm busy.

That's normal.

I'm rushed.

That's normal.

Kindness and patience.

I want that to be the 'new normal'.

The High Cost of Being Disabled

2011-12-16T05:04:00.002-05:00

The hotel rooms ranged between $145 and $195 a night, we opt for the cheaper room. The computer tells us that that room rate doesn't have an accessibility option. We try the $155 option, then the $175 option and finally book the $195 option. The computer confirms the selection. I call the hotel. After several minutes of discussion with the front desk clerk who, for some reason doesn't want me to speak to the manager, I get put through. The manager listens to me explain that I find it unfair, if not discriminatory, that disabled people get only one rate option - the highest rate. The manager explains to me that the room is bigger. I explain that I have as much right to 'choice' as does any other customer. After only a moment's tussle, she agrees with me and manually lowers the rate. She tells me that any time I stay there just call through to her or one of the other managers and the rate will be lowered. I hang up.

I am booking seats for Joe and I to go to a live show. I can't book on line because there is a message saying that to book accessible seating customers must call and book over the phone. While waiting on hold, a message tells me to book on line or, if continuing to want to speak to a representative, there will be a $5.50 charge. I wait. When I speak to the representative, I ask right away if I could be served by a manager, the woman asks me why. I tell her that I think it's unfair that I'm given only one option, and then I have to pay for using that option. I want to book on line but am not able to, not because I have a disability, but because the system seemingly can't handle booking accessible seats. The woman agrees and says that she has a disability herself and she hopes I'll write in to complain. I already had and told her that I'd done that. She booked me the seats, didn't charge the surcharge. I hung up.

This happens surprisingly often during the year. Disability just costs more. Take the group that has the highest unemployment rate of all minority groups, has the highest number of people living at poverty level, and charge them more for the same, or even less. Now I know I am fully employed. I know that, if pushed, I can afford these extra charges. But that's not the point. The point is that it shouldn't cost us more to participate - especially since the range of choice, even at the higher rate are limited. That hotel only has four accessible rooms, none are near the elevator, none have an outside view, none are on the ground floor. That theatre has only a few accessible seats, none are up front, all are at the very back of the theatre, none have a straight on view. So more for less, and gratitude is expected.

'But,' you might be thinking 'you didn't pay the higher rate or the service change.' And, I'd agree. But I did have to spend a whack more time and a whack more effort to get the price lowered and the service charge eliminated. I don't want to have to speak to the manager, I don't want to have to 'ask' for something to be removed. I just want to book a room or book a ticket. I'm not even getting into, here, how wondrous it would be to have a range of options - I'm just saying, that when you're disabled it costs. Money or time, or patience, it costs.

The only good thing about all this, is that, in these two recent examples at least, the people who I spoke to understood my complaint and acted on it. There are numerous times that I speak to people who just don't get it. Maybe that, itself is progress, or maybe I was just lucky twice in a row. Who knows? Do you?

Rudolph Guides More Than a Sleigh

2011-12-15T05:47:00.001-05:00

"Do you want to talk to Ruby?" asked Mike. She had been watching 'Rudolf the Red Nosed Raindeer' on television and was willing to talk because the show was paused. I told him that I'd like to and she came on the phone full of reindeer and reindeer games. She explained with the zeal of a scientist who'd made a discovery, that Rudolph was born with his red nose. We talked, and she occasionally sang, through the story. Then she said that most of the kids in her school like Rudolph because he helped Santa get through the storm and deliver presents.

In Ruby's view of the world, the important part of the song, isn't the end. "The other reindeer laughed at him, and called him names, they wouldn't let him play with them when they played their games!' she explained to me. "Just because his nose was different. They were bullies and they hurt Rudolph's feelings."

I'm afraid I didn't handle this discussion well, as I was unprepared for it and so I focused on the ending. "But in the end they all loved him, and shouted out with glee!" There was a pause, "But Rudolph will always remember that they called him names, he will always remember they wouldn't play with him. When that girl was mean to me, she likes me now, but I still remember."

I turned more serious and said, "Yes, it's nice that they came to see Rudolph as having something to offer, but he will always be different from them and will always remember what they did."

The conversation took a sudden shift. Ruby told me that she'd bought for her Dad a tall Rudolph decoration and it has a red nose. She said it wasn't Rudolph when he was a boy but when he's a Dad. "Do you think that any of Rudolph's children have red noses?" I asked, and she said, certainly, "No." And then the conversation trialed off.

Just before I hung up she said, "Um, Dave ..."

"Yes?"

"If Rudolph has a child with a red nose too, he'd have to love him a lot at home because he's going to get teased a lot at school, right?"

"Yes, Rudolph's little reindeer child would need to know that he was loved for his red nose and he'd need to understand why the other reindeer teased him."

"That's right!" she said.

After we hung up and I told Joe about the conversation, he said, "You know exactly where your next conversation with her will start, don't you."

I nodded.

It's time Ruby realized why bullies bully, and I'm ready for the question.

Car Car Broken

2011-12-14T05:35:00.000-05:00

It took three tries to get the car out of the underground garage. Apparently the incline of the driveway makes it impossible for even the smallest of the tow trucks to enter. Finally, on the third try, the driver and Joe managed to jump start the car the old fashioned way, pushing and releasing the clutch at just the right time. So, it's in the garage and won't come home until we pay them lots and lots and lots of money. It's a bad time for this to happen, but then, really, is there ever a good time.

Joe and I discussed about how much we could manage. I named a figure, Joe nodded. Then we spent the next several hours waiting until we heard from the garage exactly how much it was going to cost. We go to a place where we really trust that they are honest both with their estimates in with their prices. Mechanics and Doctors - the two professionals that we rely on and wish we didn't have to, the two professions in which trust is the primary ingredient. Both of us hoped, lottery ticket hoped, that the amount would be within the lower end of the range we had quoted. The call, of course, came telling us that it was about two hundred dollars more than the figure we had stated.

We agreed.

Then we reorganized how we were going to manage the cost.

Life is kind of like that isn't it. You figure you can handled just this much, and then life hands you more than you expect, and you manage. It's painful and it's bothersome but you manage. We won't have a car for the next several days, it means reorganizing a lot of things, but we managed. Christmas shopping isn't done, it means reorganizing what's on our lists, but we managed. We just do. We do because we have little choice. The problem with tomorrow, is that it comes. What the clock says and what time does are just not connected at all.

We ended the day sitting in the front room watching Jeopardy with only the tree lights on. Joe in his chair. Me snuggled into my corner of the couch. It was quiet. We'd made it through the day, stressors and all, without snipping or snapping at each other. He'd been considerate of me. I'd been considerate of him. Tomorrow is coming, and even with all the bother today, it's still welcome.

***

PS

I'd like to invite you all to visit niece Shannon's blog Half Soled Boots to read her post for today. I read it after mine and almost erased what I had written. Mine thin soup. Her's thick stew. Take a look, I don't think you'll regret the time.

A Quick Moment, A Short Blog, A Big Realization

2011-12-13T00:07:00.001-05:00

Arthur Christmas.

Ruby sat beside me, Sadie beside Joe, each beside the other. Considering that sentence, on proof reading, it seems like one of those quiz questions that ends up, so - who was wearing blue. Anyways, they were entranced by the movie, as were we. I loved it. Quick, clever, funny, heartfelt, everything they did advanced the story - it was terrific. The ART of storytelling on display.

Anyways, enough gush. We entered the theatre, seeing our second movie of the weekend, and found seats. I rolled by a young man and a young woman both with cerebral palsy, he was a wheelchair user, she was not, I sent him into a shock when my wheel brushed gently against his foot. I apologized, he smiled his forgiveness. We took our seats. I glanced over every now and then and noticed that the two of them with their two care providers were all laughing and enjoying the show. Every now and then he was caught by the humour and nearly leapt out of his wheelchair.

After leaving the theatre we found our way over to the elevator and rode down. We were watching the kids, keeping them in sight, as we were solely responsible for their safety. I noticed the gang of four who had shared our row and I called to them as I passed asking them if they had enjoyed the show. I knew they had and I wanted to share in that with them. Now, realize, I would have asked anyone I'd seen in the theatre. The two care providers spoke up immediately telling me that they loved the show, the young woman also said that she'd liked it. He sat in his wheelchair, hearing the conversation going on above him and around him, looking as if he'd checked out for the duration of our chat.

I looked straight at him and asked, 'Did you like it too?'

I know what it is to be left out of conversations.

He looked at me in some shock. Pulled himself upright, having slumped over like he'd run out of energy, and said that he'd loved the movie. We had just a moments chat and I was off. But I will remember for quite a while the grin on his face.

Inclusion makes people happy.

So ... just do it.

A Present of Presence

2011-12-12T00:15:00.011-05:00

(picture of Ruby and Sadie wearing reindeer masks picked up as a gift for them at Tescos in Bournmouth)

We got our first Christmas gift almost immediately upon opening the door to receive Mike, Marissa, Ruby and Sadie. Both parents flopped down on the couch beside Joseph, Mike's teen aged son, who had travelled into town with us. Ruby and Sadie, however, plowed over to us grabbing us for a hug. It's amazing how a big hug can come from small arms. Then they were jumping on the bed, grabbing pillows and having a huge pillow fight with Joe and I. They laughed until they cried.

Then it was time for my patented 'Chair of Death' game, wherein they each take turns sitting in the hotel office style chair, holding tight to the arms, while I try to cast them out by twisting and turning and tipping and rocking the chair. This game is a huge favourite with both kids and they each want several turns. I give out before they do, but it's terrific fun and we all laughed a lot. Mike wanted me to do one more so that he could film it on his camera phone (!) and we did that and the chair rocked and rolled and kids laughed and screamed.

The neighbours must love us.

All this happened in a room that was chock full of wrapped Christmas presents. Gaily (shut up) wrapped presents lay strewn about the room - ignored. Two little girls were so wrapped up in just being with us, playing our silly games, laughing and making others laugh that they didn't have time for gifts. They left, tired, without having picked up one parcel, one package, one prettily wrapped box. They left without guessing contents or pleading to open 'just one'. They left, instead, tired out from playing and their last hug on the way out lingered just a little. They were glad to see us.

Ruby is five and Sadie is two, and already they know how to give the gifts that really matter.

Do I Have a Point?

2011-12-11T00:08:00.002-05:00

I don't know how to write this but I'm going to try. I'm afraid I'm going to sound petty and mean spirited and hyper critical. Now I admit I can be all these things but here, I think I've got a point to make. I guess you'll be the judge of all that.

We went to see the new Muppet movie, which I found oddly moving with songs oddly deep, with Mike and the three kids. We were excited to introduce Kermit and Co. to a new generation. As we entered the theatre the row that has disabled seating on either end, with the words 'companion seating' on the seats beside were taken by a bunch of kids about, maybe 9 or 10. The supervising parents were seated a row behind. They saw me come in and offered to have one kid move so we could sit.

Now the theatre had lots of room, the supervising parents were sitting in a near vacant row, behind. Those seats are great seats as they are up a couple of steps and there are no seats immediately in front of them as they look out and over the seats below. I said, 'No, it's OK, I want to sit with my family.' The woman nodded, then we went over to another row where I sat nearish to Mike, Joe and the kids. It would have been absolutely clear that this wasn't optimal seating for us.

Now I get they had no obligation at all to get up and move. Really, I get that. But what bothered me wasn't that the kids didn't move but that the supervising parents didn't see this as an opportunity to teach those kids about how to live well and generously. It would have taken very little effort for all to have good seats. It would have just taken an act of thoughtfulness. I worry that these kids learned something at the film ... that the world was just about them. I worry that Ruby and Sadie come to learn that our style of teaching them to consider others is old fashioned and out-moded.

I had wondered if this was because I think that I have a 'right' to be considered. And then I realize, I do. But I don't think this is about disability at all. I think its about how we all agree to 'be' with each other in this world. It's about noticing someone with lots of packages, or someone struggling with a door, or someone wanting to sit with their family. It's about developing kindness as a skill.

You read that right, I think kindness is a SKILL that can be taught and that can be learned. I think it's about teaching children, or oneself, to look out into the world and see other people. Look out past the cell phone, out out past the innate sense of selfishness that we are all born with. To tap into the very base instinct that comes from being a pack animal.

But then, maybe I'm just grumpy cause I wanted to see the film with my family. Not just from a seat a bit above, a bit behind, a bit left out.

All I know is that if I'm off the mark here.

You'll all tell me.

Going Pee

2011-12-10T04:28:00.000-05:00

Santa's sleigh had nothing on us. The car took nearly half an hour to pack. I got in, then the wheelchair was loaded into the trunk, the bags and bags and bags of Christmas gifts were loaded in and around the chair. The back seat head our suitcases, more bags of gifts, and tucked into the corner one, now very tall, teen aged boy. We were on our way to Ottawa and we'd just picked Joseph up when I announced that I had to go pee. Joseph, Mike's son and oldest child, was hungry and we could get two things accomplished, drain me and fill him up.

The decision to go pee wasn't made easily. I knew that by stopping, it meant unpacking all the gifts, getting the chair out, then repacking the chair and the gifts around it. But sometimes one makes a decision out of pure necessity. I'm getting older - and everyone knows there is a reason older men never wear beige pants. So, I had to go, we had to stop.

Joseph helped Joe get the gifts out and then the chair out. I hopped in and we went into Walmart. I went straight tot he bathroom, Joseph went straight to MacDonalds. All was accomplished. We headed back to the car, him full, me dry, the world was good. I then got into the car and sat and waited while the chair was reloaded and the gifts, which had been moved from the trunk to the body of the car, were moved back to make space again.

A creeping sense of guilt took me over. When they got back in the car I said, to myself in a stage whisper, 'The only time I have difficulties with having a disability is when it inconveniences others.' I said it and I meant it. All the work it took to get the chair out and then in again at that moment bothered me. I don't take the work that my disability places on Joe's shoulders, and in this case Joseph's too, for granted. The words were out of my mouth and in the air.

All Joseph said was 'What?' with a kind of incredulous tone of voice. Joe never said anything. I knew that I'd made them both uncomfortable. I'd placed on them the feelings that I imagined they were having, I'd made them both into people they weren't. Neither, clearly, had been as bothered by stopping as I thought they might have been. My issue became their issue. That wasn't fair.

I wonder if sometimes I, and maybe others, imbue into the world attitudes that aren't there. I wonder if we off load our own feelings into the way we perceive others feelings? I wonder if sometimes I am the source of the attitudes I perceive around me. I try to be 'jouranlistic' in how I see the world, but I wonder if that's even remotely possible. I don't know. But I do know that I got this one wrong and made others uncomfortable. I'd invited others to my pity party and they didn't come.

Hmmm.

Maybe a car stuffed with wrapped presents had another gift that didn't need unwrapping.

Maybe.

Just An Ordinary Day

2011-12-09T03:59:00.001-05:00

When we were in England, only a couple weeks ago. I was sitting in the car reading as Joe was in the laundromat doing the washing. He jokes that when he retires he's going to write a book about laundromats he has known and loved. Given that the UK is known for its complicated street system, one road can have 12 names in 11 blocks and city planners used dropped spaghetti to plot the course of thoroughfares, Joe who gets lost in Alberta, needs to have me to guide him. Well, actually I work with Ted, our GPS, who is getting old and is sounding breathless after negotiating two or three miles in England.

All this to say, I was sitting in the car. We were facing a 'food co-op' and I was alternating between reading and watching people amble past. At one point I looked up to see a fellow with a disability scooting along on his scooter. I watched as he nimbly made his way up the ramp and into the small store. Ten or fifteen minutes later he was heading out. He stopped, partway through the door, and I could see he was saying something to the people inside. Then he was off again, back the way he'd come from.

The look on his face was lovely. I could tell that he was enjoying being out, being independent, being fully engaged in living his life. There in the car, I really missed my own power chair. My travelling wheelchair is manual, I am grateful for it, but there are times, especially a week or two into a trip, when I miss the power chair. I did right then. I missed having those moments of complete freedom and the ability to simply get up and go.

When I got home from work yesterday, Joe was in the midst of wrapping presents for the family - we are going to Ottawa this weekend to see Mike, Marissa and the kids. We'll be taking a whack lot of presents with us. We needed a few more things to be done and Joe asked if I would mind doing the shopping while he continued on with the wrapping. Me? Shopping? Oh, what a burden. So, I got home, hopped in the chair and I was off. I'm fully able to get in and out of the building without help - that took me about six months to master. So I have no worries about being on my own.

I went into several stores, made several purchases, enjoyed chatting with shopkeepers that I know. Having children in my life means saying sentences that I never thought I'd ever say, like, 'Do you have Barbie dolls.' We buy most of our toys for the kids at a local toy store that's independently run and full of cool and odd toys. The woman laughed when I grimaced at the need to ask for a Barbie doll. She told me, regretfully, that they didn't sell Barbies. I almost hugged her in gratitude. I tried. I really tried. Oh well.

Anyways, all this to say, I was having fun.

On my way back I looked over towards one store and saw my reflection in the window. I had that same giddly, gleeful look on my face as did that disabled guy in England. Freedom is a wonderful thing. So is independence. But so is the human impulse to defy limitations. I was once told that I wouldn't ever be fully moblie again. They were wrong. I am not only mobile, I'm motorized.

Thanks Inspector Lewis

2011-12-08T04:34:00.001-05:00

I almost always cringe when I hear people with disabilities being referred to on television programmes. It's like people who write these things have no idea what to call us. I understand, in part, their dilemma. There have been so many euphemistic ways to refer to disability that it's easy to pick up the idea that one is never to mention the 'dis' part of 'disablity'. People struggled to 'invisiblize' us in language - well, that's a nice way of putting it, probably a more accurate way would be to say that an effort was made to 'euthanize' 'disability' from language.

I think 'physically challenged' is the one that I hear most often. That and 'intellectually challenged' or 'mentally challenged'. I get what these things are trying to do - but that's the problem, these are words that are just trying too hard. Disability is. Disability will be. It's simple, accurate, and, for me, identity. I sometimes get lectures from people, mostly non-disabled, about how the 'dis' on the word is 'non validating'. Um, when sonmeone without a disability tells me with a disability how a word is supposed to make me feel, are they, in fact telling me what the word means in their mind - but I digress.

Over the last couple of weeks we've been watching the box set of a detective series, 'Inspector Lewis'. We've been enjoying it. On one of the episodes there is a character with a disability. I watched for how they would portray her in the plot line and how they would refer to her in the script. They were pretty good. She had a disability, they referred to the disability, the even called her a wheelchair user at one point.

There was a moment, when in frustration, Lewis, refers to this 'what do we call people with disabilities' thing and said, something like, 'I guess to me she's just differently normal.'

That sat in my head for a moment.

Here I need to say, do not misunderstand my meaning, I like the word 'disability', I use it. I am not a euphemism. However, I liked the attitude behind the 'differently normal' ... again, I'd never use this as a way to describe disability, but I liked the attitude. I think that because that's an expression that applies to every single person I know. Everyone is just slightly off center. I don't think that God ever intended to hit dead center on the genetics dart board. It seems to me that every person I know, I've got to make a bit of allowance for. And, trust me, I know, that every single person has to make allowance for me - and not because of my disability.

Difference is normal.

What a refreshing point of view.

I get so damned annoyed when people say 'oh, well, we all have a disability in some way'. It's not true and it's patronizing. More than that it takes away my community - makes disability issues, which are very specifically disability issues, somehow less relevant and certainly less compelling. It also takes away from me my history as a disabled person and trivializes my real sense of oppression by people who have those '~~inconveniences~~ disabilities' that they keep referring too.

But understanding that difference is just part of normalcy, I was really good with that. I don't know who wrote the programme but it was simply a terrific episode of a terrific series. Joe and I are now beginning to incorporate into our personal lexicon the term 'differently normal'. Like, after an encounter with a really officious parking attendant the other day - Joe said, 'Ah, the world made richer by the differently normal.' I laughed. Then once when a guy was really, really helpful, in the kindest way possible, I said, 'Now that's the kind of differently normal you want to run into in your day.'

It's even helped me in teaching. The other day I taught an abuse prevention class and there was someone there who had difficulty sitting quietly, before that would have annoyed me as a teacher, but, hey she's just 'differently normal' ... that's just who she is and how she is. I know all sorts of people who can't sit quietly anywhere - and they always seem to go to the same movies as I do. So big deal, that's just how she's normal in a different way. Irritant was gone.

So, here's to being disabled and living in the world along with the 'differently normal'. Aye, there's the challenge too!

Bird's Eye View of History

2011-12-07T00:06:00.002-05:00

They took a red hot needle and pressed it, hard, into the eyes of birds. They did it purposely, aware of the creatures cries, fully knowing the pain they caused. They did it to win contests. They did it out of a belief that the bird would sing, all the sweeter, when blinded to all but song.

It was a common practice in the late 19th and early 20th centuries, popular in Britain and other European countries. It was considered a 'sport' and prizes were given to the bird who could sing the most phrases in a set time. Vinkensport, as it is called, means literally, 'finch sport'.

Thomas Hardy wrote a poem against the sport:

Blinded ere yet a-wing
By the red-hot needle thou,
I stand and wonder how,
So zestfully thou canst sing!

But the practice of blinding the birds (substituted by having them sing while in a dark, well ventilated box) was ended because of a campaign led by veterans of the trenches who had been blinded in the war. Their campaign brought to an end a practice of unimaginable cruelty.

I found little on the web about this campaign but can only wonder at the generosity of spirit and the gentleness of soul of men who returned home, disabled, to face immense issues of rehabilitation and poverty, of unemployment and discrimination, taking up the cause of little birds. Raising a public outcry that brought an end to a barbarous practice. The precise same public who would respond with a callousness and cruelty to the veterans who returned home, having fought a war for freedom.

This story moves me.

I found out about it because it was mentioned on the television show QI and after hearing about it I wrote the 'QI Elves,' who are the people who research the show, and asked them for more information. Imagine my surprise when I opened my mailbox to find an email from 'elves'. They kindly send me information and a link to a New York Times article about the practice along with a brief mention of the service men's protest.

Disability history is replete with stories like this one. Stories of people who in extraordinary circumstances do extraordinary things.

A two line novel:

Chapter One:

They took needles to the eyes of birds.

Chapter Two:

And blind men stopped them.

Disability history is as rich as it is often hidden. This little fact has captured me, inspired me, motivated me and most importantly, gave me a sense of true awe at the immensity of the human spirit and the generosity of the human heart.

Canadian Blog Awards

2011-12-06T07:01:00.001-05:00

Today's regular post follows this update.

The time for voting is nearing the end. I am nominated in the 'best overall' and the 'best personal' categories. Shannon at Half Soled Boots is nominated in Best Blog Post and Belinda at Whatever He Says in Best Religion and Spirituality categories. If you could spare a moment to vote, that would be often YOU DO NOT HAVE TO BE CANADIAN TO VOTE. Too, you may want to pop around the various blogs for a good look see. I found some cool new blogs. The list of all that are nominated in each category is there. And here's where you vote.

This is for the first round, the second round will begin later in December. In this round you can vote only once, in the next round you can vote daily. I'll let you know if I make it to the next round.

Thanks for your support.

Validation

2011-12-06T00:06:00.001-05:00

Disability means something.

I know that.

For me, it means that it takes more effort to get around, that there are barriers in accessing everyday life, that planning and preparation are a huge part of every decision. It means those things. It means more than that too. It means that discrimination is a daily experience. This store has narrow doors, that church has stairs, the place across the street has installed a ramp that is steep and dangerous. It means that people will notice me but not see me, that conversations will happen around me, that 'the' often becomes my first name and 'chair' my last. I know that.

I have to keep remembering what my disability doesn't mean.

It doesn't mean that 'second class status' is acceptable.

It doesn't mean that asking for access is asking too much.

It doesn't mean that speaking into conversations about me is rude.

It doesn't mean that my participation is a favour granted by another.

It doesn't mean that my voice is extraneous.

No it doesn't.

They used to call people like me an 'invalid' ... now, instead, I'm often treated as if ...

my rights are invalid

my needs are invalid

my voice is invalid

or that

I am invalid.

I have to remember that.

I have to tell myself over and over again.

I need to validate myself in moments when I'm told that my concerns are invalid, my experiences are invalid, that my expectations are invalid.

Disability means something.

It does.

But what it doesn't mean is more important.

Understanding Christmas

2011-12-05T06:26:00.002-05:00

"You need to understand ... it's Christmas."

I am expressing frustration at the fact that another of the stores that I frequent has become completely inaccessible to me. Aisles that I can normally pass through are now blocked with display after display.. I admit, my wheelchair is larger than most, I understand that there will be places that are barred to me because of the size of my chair. But, I'm not speaking of that here, I am talking about wide aisles becoming narrow passageways, giving entrance only to those on two feet. No one on wheels will get through.

There was a store that I really wanted to get into to do some shopping. I got in the front door and then stopped short. I couldn't go left, I couldn't go right, I couldn't go straight ahead. I was flummoxed. The store manager saw me, approached with a smile of understanding (hours of training no doubt) and said, 'Gosh, I'm sorry, the displays seem to be in your way. He spoke to me as if I was a stranger. As if he'd never seen me before. But, weirdly, we have spoken before. I shop there, if not frequently, regularly. We'd chatted. But his tone, his voice, his eyes said 'You are a stranger.'

I am tired. I still haven't had a real chance to rest up from my trip overseas and I'm counting the days to some time off. I don't want to have a discussion about accessibility and my right to shop. All I wanted to do was buy a freaking present. In HIS store. 'I need to get to the back part of the store, if we move one of these displays is there some way I can do that?

'I'm afraid that we're all decorated up for the season,' he said.

This struck me as odd because I'm not talking to him about the decorations, I'm talking to him about product displays. 'No, I don't mean the decorations, I mean these displays, I just need to get to the section at the back.' I promise I wasn't whining, I had no anger in my voice. I'm way too tired for confrontation. I just wanted to know if I could get what I wanted to get.

'After the Christmas and New Years sales are over, we'll be back to normal.' He's steadfastly NOT saying that the store is inaccessible to me. But that's what he's saying. My mind is already leaping to other options. When you have a mobility disability, you need a mind that can leap - to options, to adaptions, to solutions. I know I should have said something. I just said, quietly, 'I just want to buy a gift.'

He smiled again, understanding, but his eyes said, 'You are blocking my door.'

I began to pull out of the store.

Then he said, 'You have to understand, it's Christmas.'

All I said, and I know he won't get it, was, 'If you understood Christmas, I'd be able to get into your store..'

Ruby's Question

2011-12-04T00:04:00.001-05:00

A few weeks back, last time we saw Ruby, she was sitting with me working on a colouring book. She asked me, quietly, if I loved her. I told her that I did, because, in fact, I do. She glanced at me and asked, 'Why?' I was a bit stuck for an answer. I'm not often lost for words, but this kid can do that to me, easily. I just grinned at her, gave her a hug and said, 'You know why.' She laughed but I knew she wasn't really satisfied with my answer.

It gave me pause to think. Why do I love her?

I don't love her because she's a 'good girl' ... because that would mean that I love her conditionally. That when she's 'good' she's loved, that when she's 'bad' she's not.

I don't love her because she's really pretty ... because that would mean that I love her, and value her, for something completely arbitrary.

I don't love her because she's smart ... because that would mean that I love her more with a good report card than with a modest one.

I don't love her for those reasons.

We are seeing her this weekend and I've been determined to remind her of the conversation and give her an answer. All the 'typical' answers just seem so wrong to me. They don't accurately sum up my feelings about her at all. This swam through my mind yesterday as a few people sat around in the 'warming area' for the International Day of Disabled people. We, strangers most, sat around in a small circle and chatted. We laughed. We shared information. We 'compared notes'. And I thought, a tiny little thought it was too, 'I love being here right now.'

Later, I thought about that. I loved, not what made us all the same, but what made each person different. It was exciting to talk of a commonality of experience from a diversity of differences. We, all, disabled people are not alike, not one of us. But in our difference is our commonality, in diversity is community.All this was swimming around in the stew of my mind and then suddenly Ruby's little question, 'Why?' popped into my mind.

And I know the answer.

I love Ruby for what makes her different.

Different from every other 5 year old girl.

I love the way one strand of her hair always falls across her face when she's working.

I love the way she pushes it back using her whole hand.

I love the way she always peeks in to see us before she tries to surprise us that she's here.

I love the way she always says 'um' before our names when she's going to ask a question. 'Um, Dave' or 'Um, Joe' is always the start of an interesting chat.

I love the way she kicks off her boots as soon as she can when she comes in.

I love the way she holds tight to the back of my wheelchair as I wheel around.

I love the way she asks me 'why' about things.

I love the way the 'whys' always make me think.

In a society that seems to loathe difference, I think it's interesting that on a tiny little level, the level of 'two' it is difference that makes the difference. But when two becomes four, or, more probably when four becomes eight - difference is greeted, suddenly, with hate. I don't know if it's math or alchemy, but what is loved in another becomes hated in all others.

But, I'm saying none of that to Ruby.

I'm just going to tell her I love her because of everything she does that makes her completely and uniquely Ruby. I'm going to tell her that I love her for everything that makes her different. I'm going to tell her that she's not like any other person I know, and I love her for everything that makes that true.

I really want her to understand this.

Because one day, while we are still two, she will be eight.

And by then I want her to love me, and all my differences, because, and precisely because of those differences.

At eight I don't want her to see me and my differences and wonder, why, just a few years before she loved me, and loved me true, and wanted to know why I loved her too.

International Disabled Persons Day

2011-12-03T00:15:00.001-05:00

Today is International Disabled Person's Day. To celebrate, I'm going to introduce you to Lene Andersen, one of my favourite disability bloggers. I loved this post and asked her if I could put it here. I thought a great way to celebrate the day would be to celebrate another disability blogger. So let me introduce you to Lene Andersen ...

Sensitive to the 'D' Word

I've been struggling with whether to write this post. In one way, it's a response to a comment and I don't want the person who left the comment to feel as if I'm picking a fight. What am I talking about? Well, it’s like this…

A few weeks ago I wrote a post called The Path to Sugar Beach about discovering that there wasn’t an accessible path to a new recreational area in Toronto. I got a comment from someone named Mike who is new to the blog - be gentle with him, please - and lives in my area telling me about an alternate route that I hadn't realized existed (which although terrific, it doesn't negate the point that there were no curb cuts close to the entrance). Based on the existence of this alternate route and the fact that Sugar Beach itself is probably accessible, Mike thought that I and other commenters who expressed frustration about inaccessibility were perhaps "overly sensitive". I respectfully disagree and am going to use this as a jumping off point to discuss discrimination against people with disabilities. And Mike? None of this is particularly directed at you, it's a larger argument about a societal phenomenon.

When you mention the D-word (discrimination) in connection with people with disabilities you get the funniest reactions. People sort of wince, they cringe, they even get angry and \ question your conclusions. It's as if they have accepted the concept of discrimination against other groups like racial minorities, women and aboriginal people, but there's a huge stumbling block when presented with the concept related to disability. Is it because us cripples are usually viewed with pity? Is it that assumption that we are not quite a whole person - or half a person, as Jerry Lewis so charmingly refers to us (thanks to Beth for the link)? Is it that weird tendency to demand gratitude from us when granted a service, a privilege, access, whatever? Is it that we are so firmly wedged into the niche of "pitiful sick people" that the concept of us having equal rights is so difficult to comprehend and therefore it it’s impossible to conceive that we can be discriminated against? I don't know and I don't get it. I especially don't get the anger. However, I do get why those of us who live with disabilities get angry.

My family and I were checked into a fancy hotel in Europe that had assured us they were wheelchair accessible. The entire time we stayed there, I entered and exited the hotel off the loading dock and used the freight elevator.

On another trip, we booked tickets with British Airways and were surprised when they required that I produce a doctor’s note allowing me to travel (this was a long time ago, they may have smartened up by now).

I was part of the wedding party of someone I love a lot and they had had a very specific conversation with the Hall regarding accessibility before reserving a date and handing over money. At the time of booking, the washrooms were not accessible, but they assured the bride-to-be that at the time of her wedding a year and a half later, they would be. They weren't. When I needed to pee, it happened on a commode put in the Manager’s office, which was later emptied by a gentleman in a morning suit who left the door wide open so all the other guests could see what was happening.

When I applied to graduate school, I was asked to come in for an interview. We discussed what it meant to go to graduate school, and I was asked questions such as how I'd manage lunch, given that there was no cafeteria in the building. When I started classes, I discovered that none of the able-bodied students had been interviewed. Or asked how they were going to manage lunch.

I have this handy test to check whether a situation is Wrong. Substitute another group, such as women or racial minorities instead of disabled and if it would seem reasonable that such a group would have issues with the situation in question, it's also discrimination when applied to people with disabilities. Because we wouldn't expect a woman or someone who is a racial minority to suck up entering a fancy hotel by the freight elevator, be required to ask their doctor if they are allowed to travel - and no, that one isn't reasonable, because a) having a disability does not mean you’re sick; and b) people who have invisible medical conditions are not required to do so - to pee in a pot, to be interviewed for access to graduate school when men aren't or, come to think of it, to take the long route to a recreational area when white people can get there in 30 seconds.

Disability is a protected ground in pretty much all human rights legislation. Our local one, the Ontario Human Rights Code, states that "[e]very person has a right to equal treatment with respect to services, goods and facilities, without discrimination because of race, ancestry, place of origin, colour, ethnic origin, citizenship, creed, sex, sexual orientation, age, marital status, family status or disability." Equality isn't just about getting there, it's also about getting there in a dignified manner. And it's not equal or dignified to pee in a pot, it's not equal or dignified to enter off the loading dock and it is not equal or dignified to have to take the long way when everyone else do not.

I have another little test that I would very much like for most able-bodied people to try. Rent a wheelchair for a weekend and every time you leave your house, do so seated (most residences in North America are not accessible, so you get a pass for when you're at home). Take a walk - a conceptual walk, i.e. move about in the fresh air for enjoyment, not actual walking - in your neighbourhood, go downtown to a large mall, check out a museum, visit some friends (you're not allowed out of the chair in their home), etc. You get the point. Participate in your community. The only times you may leave the wheelchair is when you're in a public bathroom and you have to use the accessible stall. It's an interesting experiment, one that still has a built-in escape hatch, but it starts to give you a sense of what it's like. From people who've tried it, I've heard reports of frustration, a newfound awareness of steps and other barriers and one person told me that nobody has eye contact with you (I never knew that people, strangers, had eye contact with each other in public). If more people tried this test, maybe it wouldn't be such an uphill battle to implement universal design. And maybe the D-word would be more accepted so we could get beyond talking about whether discrimination against people with disabilities exists and start eliminating it.

Home Late Blog

2011-12-02T00:18:00.002-05:00

A nice moment.

I was leaving my friends Belinda and Susan's, who work for Christian Horizon's, agency Christmas party. I had rolled up to the lobby and was waiting for Joe to go and get the car.

To my left was the 'bell stand' where a young bellman stood chatting to a fellow wearing a lovely dark suit. The bellman was trying to track down why the taxi had not arrived. He kept calling the cab company and hanging up to a busy signal. In between the calls I heard him chatting with the fellow waiting. I couldn't hear the conversation because the man in the suit spoke too softy to hear.

Finally, the bellman said, 'If you want to go back to your party, I'll get you when the cab comes. No sense you waiting out here.' The fellow nodded.

And turned.

He had Down Syndrome.

And I couldn't tell from the young bellman's manner.

That may not shock you, but it shocks me.

And, that moment following that evening, my friends, comprises the official start to my holiday season.

City Hall Update

2011-12-01T22:17:00.003-05:00

Dave, I have confirmed that the event on Dec. 3 is being moved inside to the City Hall members lounge at City Hall 100 Queen St. West from 12:30 - 2 p.m.

This was the final email I received after much discussion with staff from City Hall. Let me do this briefly.

1) The woman who I initially thought cared, actually did. She worked hard to bring people together and to ensure that a fruitful discussion take place. I apologize to her for jumping to the conclusions when she didn't return my call. She was waiting for answers, I was waiting for a call. Things happen. I got that one wrong.

2) I spoke to people from the Diversity (it has a longer title) department at City Hall and, remarkably, felt really heard by them. I don't want to get into a blow by blow description of the discussion as it was far ranging and passionate and would be impossible to sum up correctly. In the end I really did believe that I was heard, that my concerns were not being denied or minimized and that there would be real effort next year to celebrate the International Day of Disabled Persons well.

3) What could have been a rancorous discussion between antagonists became, quickly, a strategy session between allies - that magical work was done by the folks from the Diversity Department. I thank them for that.

4) I also thank all of you who supported me by writing in to City Hall and for commenting on the blog. It's moments like these that I am thankful for my home community of fellow RAIMH readers.

So, all's well that ends better.

I can go to the ceremonies, indoors, on Saturday.

I am so very, very, pleased.

International Day of Disabled Persons: NOT

2011-12-01T00:01:00.005-05:00

Update: I have had a long discussion with City Hall staffers and am pleased with the end result of the discussion. I've removed the City's email address as I no longer believe that any further purpose would be served by them receiving any more messages. They got the message. I'll update more in a moment.

This is a tale of dueling web pages. Take a look at the first which is the City of Toronto announcing that they will not be celebrating the International Day of Disabled Persons. Hmmm. Now take a look at this one announcing a celebration of that very day at Nathan Phillips Square in front of City Hall in Toronto. And, just for fun, one more which seems, also to be saying that a celebration is happening, outside City Hall, in Toronto.

What's up, you may ask.

Well, I made a lot of phone calls yesterday and I was supposed to hear back from the City by the end of the day with some answers. A very polite woman, obviously paid because she sounds like she cares, made a promise to me to have information so that I could write this post accurately. Like many promises made, it was a promise broken. But, I have to admit, she was good. I actually believed her. Give that woman a raise, she truly gets the 'what this job needs is sincerity and once you can fake that, you've got it made' approach to working with the public. Ah, well.

Even so I do have things to report.

Here's kind of what happened. I decided to find out how my city, Toronto, was celebrating the day. I knew that they usually held a ceremony of some kind. I wanted to attend. I found the cancellation on the City website, but I also found announcements of a ceremony on other disability related sites. Thus started calls, I was confused, one announcement seemed to say it was cancelled, others that it was going on. I called a few of the organizatons who are advertising an event on the day and was told that the day was going on but that the City was not part of the celebration as was evidenced by their cancellation notice. So, I wanted to know, then, why the City had cancelled their participation in the day. I called City Hall and the woman I spoke to had no idea about International Day of Disabled Persons and could find no reason anywhere for the cancellation, so she fobbed me off on my ward representative, telling me that if I had questions I needed to contact them. I called my councillor, and spoke to an assistant, who did not know of the day or of its cancellation, what deep inroads we are making, but I was given the number of the woman who heads up the Diversity Department at City Hall.

She informed me that the day had been cancelled because the 'community partners' with the city did not have the resources to participate in the day. It seemed as if she was saying that organizations supporting disabled people and organizations of disabled people had bowed out. I told her I thought that this was an odd thing to say since there was clearly a celebration going on in the Square. I told her that I'd spoken to the 'community partners' and that the 'community partners' were going ahead with the celebration in spite of the City's cancellation. She said she'd get back to me.

She didn't.

Instead I got a woman who called me, thinking I was the media, I told her that I was simply a blogger. Even so I asked questions. I wanted to know several things:

1) how was the decision made to cancel the City's participation in the International Day for Disabled Persons

2) why was it being represented that there were no 'community partners' when clearly 'community partners' were going ahead with the day.

3) why was I being told by various people, on various phone calls, that the decision to cancel the day was made by the city - was this accurate or am I misunderstanding something?

4) the present Mayor of the City of Toronto is one that has used derogatory language against people with intellectual disabilities - was the cancellation of this day an indicator of how the Mayor feels about people with disabilities.

5) the celebrations will be, as I understand it, outside. This means that many, if it's cold, will not be able to go. I, for one, will not be able to attend as my disability doesn't allow me to sit for long periods out in the cold.

So here we are, in Toronto, on December 3rd, International Day of Disabled Persons - out in the cold - marginalized - a minority disrespected and disenfranchised.

I wonder if I could ask you all a favour.

Could you jot a note to XXX which is the general mailbox for the city and ask why Toronto is ignoring the International Day of Disabled Persons. You may be told that they are going to proclaim the day (whoopie) and that they are going to give out an access award on December 8th ... at a celebration of Human Rights - this was told to me straight faced as if I didn't know about, or maybe could not understand, the concept of 'tokenism'.

If you have contacts within the media, maybe you could ask how this kind of action could happen without any comment or coverage by the media. My not knowing about the cancellation was as troubling as it having happened at all.

I don't often ask you to take action here on Rolling Around in My Head, but I would be very thankful if you could help me celebrate the International Day of Disabled Persons by finding out why my city deemed it insignificant. For those of you outside Toronto, or outside Ontario, or outside Canada - please feel welcome to participate. Please 'tweet' or 'facebook' this request and the City's email address. I don't know how to either of those, but I'm betting many of you do. Or you can blog about it like the Seated View did, and like Lene, ask hard questions and take significant action. The City needs to know that the world is watching and aware, and even more, that people with disabilities have voices.

You see, this is kind of hard for me.

I love my city.

It just hurts to know, it doesn't love me back.

Watching From The Windows in Wales

2011-11-30T00:05:00.005-05:00

Our first weekend in the UK had us staying in North Wales. We arrived the Friday and left the following Tuesday. In between arriving and departing, Joe and I had maybe the best time we've ever had while traveling. This was due, primarily, to where we stayed. The Carrog Mill Cottages are located in a remote and rural part of North Wales. We drove in at night and our hosts had given us directions telling us to stop and ask at the local pub if we couldn't find them. In fact, in the dark, we were a little lost so we stopped and asked a woman out walking. As it happened, we were stopped right at the end of the long driveway up to the Cottages. As typical in small towns of course, we met and chatted with that woman, the next day in daylight.

We were greeted with warmth and welcome, typical of the people of that area, and then were left to explore 'The Dairy' which is the accessible cottage. It had three bedrooms, one of which had a lovely large king bed and an en suite accessible bathroom. There was a lovely large kitchen, with a fridge, a stove, a microwave, a dishwasher and, perfect for us, laundry facilities. We had stopped to pick up some food on our way there and we cooked it up in the kitchen. We hadn't known that it would be actually a full kitchen so we were circumspect when we shopped. But we had picked up eggs, veggie sausage, potatoes and beans, with the intention of making a 'full English' breakfast for ourselves.

I was in heaven. Everything was perfectly accessible to me. I took over the making of breakfast, something I have always enjoyed doing. The 'timing' of breakfast is the most arduous of any meal. Getting toast, eggs, and all the rest ready at exactly the same time is an art. At home, our kitchen is only partially accessible. I can do chopping and other stuff but I can't get at the stove. Here, I was back in form, Joe was loving me making breakfast, a job that he normally has to perform. Smells filled the air but it was the aroma of freedom and independence that really caught my senses.

The setting of the cottages is simply stunning. From every room is a view so lovely that it's hard to record here. I am not a poet. I do not have the gift of describing, well, the beauty I see around me. All I can say, is that to look out the window was to comfort your soul. So I sat, as I described in an earlier blog post, and listened to the eggs form a choir and sing sizzle and the toast fill the air with the smell of morning, and looked out at the world. A part of me, made inaccessible by the inaccessibility of life, opened up again. Barriers removed from the real world, removed barriers self created for self protection - and it was a moment where it was possible to simply feel the the joy of living freely.

We spent the first day, the Saturday, out and about. We went into Conwy and saw the castle there, then discovered the Great Orme and the Llandudno Pier both of which we visited. The Pier was in near shut down but the roll out into the ocean was lovely. The drive around the Great Orme and up to the top will forever be a wondrous memory. There's even a point where the sandstone cliff seems to be sticking it's tongue out at the sea - an image I loved. Then on our way back home we discussed Sunday. There were lots of places I wanted to go, but I wanted something more. I asked Joe if he would mind if we just stayed in, lived in the cottage for an entire day. Cook, and chat, read and watch television, just the stuff of everyday life. To do this there, where I could participate in my life and my passions easily was a vacation itself.

Joe, luckily, wanted the same thing. We shopped and picked up everything we needed to make a wonderful holiday kind of dinner. A 'veggie turkey' roast and all the trimmings. It felt like a time of celebration. And then we moved around the cottage as if it were our home. As if we were taken back into a time where we had to decide who did what based, on wishes, not access. We hadn't had a day like that since before I was in the wheelchair. It proved to me, again, as has been proven to me again and again, that disability is more often experienced because of barriers in the real world. Yes there are things that are harder for me to do, but remove a piece of furniture, widen a door, lower a sink, and 'Bob's Your Uncle'.

I spoke a bit with the folks who run the cottages and they told me that all they need from someone is a call and they can determine if the access that they've got will meet the needs of the traveller. That's what they did with me. Further, they can even, given a bit of notice, provide some staffing support if someone wants to both be with their family, or friends, but also have a bit of help on the side. They are open to making this a terrific experience. They did it for me. They made me feel welcome in their cottage. But then, that shouldn't be remarkable in the hospitality industry, should it? What was more important was that they made me feel welcome in my world again. My everyday typical world.

We left refreshed.

We left determined to come back.

I was not asked to write this blog by the staff at the cottage, though many of them read my blog. They would never have thought to turn my vacation into promotion. But I wanted to write this. I wanted to have time to think about it and write it as well as I could.

Here's how much I loved that place. Our cottage had poor Internet, we couldn't connect at all. Their office, just across the way, is also accessible and they made it possible for me to go over there and set my laptop up there. And I didn't. I didn't want to. I didn't need to. I was connected in a real way with the real world - suddenly that's all that mattered.

I close my eyes, here at my computer, and I can see, in my mind, the view from the kitchen window. And that simple act, will be done again and again and again until we are back to see it once more.

Thrown Out of the Citizen Ship: Canada.com post

2011-11-29T00:11:00.000-05:00

The most often asked question I get, as someone with a disability, who works with others who have disabilities, and who travels extensively to lecture and consult is probably fairly easy to guess. "Which country is more advanced in their service provision to people with disabilities?" I find that this is a very difficult question to answer for a simple reason:

It presupposes that people with disabilities are a citizen of any country.

As odd as that may sound, I think it an accurate statement. I do not see people as disabilities having 'rights and freedoms' in the same way as do other citizens. I do not see people with disabilities as having an 'expectation' of being part of the social contract that typical citizens have of one another - respect, fair play, or even simply, decency. I simply don't.

Consider the world of those with intellectual disabilities. Many live within systems created by governments to provide support for them. These agencies become worlds unto themselves. Suddenly rooms full of non-disabled people, acting without the bother of consultation with those with disabilities, sit in rooms and write policies. Polices that affect life, liberty and the pursuit of happiness. In many parts of the world, in agencies all over the world, people with disabilities have their civil liberties determined by people they never elected; by people, often, they've never met; by people who's opinion about their lives, their morals and their relationships count more than the congregate wishes of those in care.

The history of people with intellectual disabilities is replete with institutionalized, government approved, violence. Forced segregation. Forced sterilization. Forced subjugation. Polices were written which allowed their skin to be shocked with cattle prods, their confinement into little tiny 'time out booths', their family contact limited, restricted and even forbidden. Policies were written that disallowed loving relationships, dating and marriage outlawed, homosexuality soundly and horrifically punished. Ah, but that's passed, you might say.

Well, firstly, not everywhere. Well secondly, where this has passed into history, it passed into history without apology. The need for electric shock then is not challenged by the fact that there is no need for it now. But, then, people with disabilities are used to living without apology. But even if those horrid practices of the past are tucked away in time, they cannot be tucked away in living memory, the fact remains that the civil liberties of people with intellectual disabilities are determined, not by governments, but by people who people organizations. Give a person a pen, a piece of paper and power and then watch what happens.

So, when talking about people with intellectual disabilities I answer the question: "Where do they get it right?" By telling the truth. I have seen service done well, really well. But it's odd. It's an agency by agency by agency determination, not a country by country. One agency in one part of a province, or state, or shire, may provide extraordinary services. Another agency, located a mile away, may provide a crushing, controlling kind of care. A couple may be allowed to love here, but be separated there. A person may be able to challenge staff opinion here, but be punished there. A person may have the right to risk here but may be forbidden any attempt to recognize adulthood there.

For people with physical disabilities, this is true, but in a different way. Other people determine our access. Other people determine our ability to transport ourselves. Other people, sitting in rooms, determine even, oddly, if we have a disability they wish to recognize. I went to be assessed to see if I would be allowed to use the WheelTrans system here in Toronto. I had to place myself in the hands of a person only four days older than sperm, who looked me up and down and, in a disinterested fashion, made me present my disability to him. I feared giving wrong answers. Was there a right way to be disabled? I understand the need to determine eligibility - but does it have to be done with suspicion and humiliation as was the experience for me and with superiority and arrogance from the kid with the pencil?

People with disabilities are the ones who are always at the end of the finger of blame when it comes to public spending - and therefore end up at being at the end of the fist of both government and neighbourhood bullies. On my travels I meet people with physical disabilities who no longer feel free to use their own community. They no longer feel as if their citizenship is valid, their participation encouraged, or their presence a welcome aspect of diversity. Tell the truth, when people use the word 'diversity' they don't mean us. Because, I realize, that 'All doesn't mean All' ... at least hardly ever.

People with physical and intellectual disabilities are the ones that face public brutality with little in the way of concern. The idea of a hate crime against a person with a disability is almost laughable. A tiny little search of newspaper articles about violent crime against people with disabilities will find that it's on the rise. A tiny little search of media representation of people with disabilities will find that negative stereotypes are on the rise. A tiny little conversation with a person with a disability will tell you even more - we are fearful. Fearful because crimes against us are not seen as serious social issues. Fearful because victimization of those with disabilities continues unabated. Fearful because the media, and celebrities, and comedians - see us as wonderful targets for bigotry, for stereotype and for mockery. Fearful because we've always been other, seldom been simply another.

Fearful because our citizenship doesn't matter.

We are not Canadians.

We are not British.

We are not American.

We are not German.

We are not ... spin the globe, put down a finger.

The loss of citizenship, the loss of the right to participate in the great social contract is a frightening prospect. I believe that people fear disability, not because they might have to roll around a bit, but because they don't want to be lose their status, their standing and of course their citizenship. I believe that people with disabilities, the world over, can relate to feeling as we are meant to feel - unwelcome.

A long while ago, I wore I bright shirt. I seldom do - following the rule that fat people wear dark colours - and an elderly woman tapped me on the shoulder and said, 'You shouldn't wear yellow, because when you wear yellow, we can see you, and we don't want to.' I felt hurt and shamed by her remark.

But you know what, I just came back from a three week tour in the United Kingdom, where the cost of disability is a constant theme ... and I wore yellow two days out of three. 'See me,' I thought, 'damn it, see me.'

They may not want to see us. They may not want to include us. But we are here. We are staying. And though our governments, our carers and even our families may have lost sight of the fact that we are, and will always be equal citizens. I've not yet met a single person with a disability that has forgotten that ... and as long as we remember, we can fight, and as long as we can fight, we may one day win.

Canada.com post up

2011-11-28T14:54:00.000-05:00

Hi, I've a new post on Canada.com. As before, it will appear here on Tuesday, it's one that I took a fair time mulling over and will appreciate discussion and feedback. I also need to say that I'm glad that Canada.com has given space to disability issues.

What We're For!?! (I Need Your Help With This One)

2011-11-28T04:45:00.000-05:00

I've written, many times before, about my ability to use a moving sidewalk in a creative manner. As they all have signs that indicated that wheelchairs and carts are not allowed on the moving sidewalk, for a long time I dutifully went long side. Pushing myself, or being helped in pushing myself, I would look over at those riding the moving sidewalks - the same people who often think me lazy. Mostly I see the face of travel - frantic to get to a gate, bored with the hours of waiting, sadness at leaving love behind, joy at travelling towards a destination - but sometimes I get the other faces. Smug that they can ride and that I can't. It seems if the world presents a hierarchy, people will climb on it, especially as they, as hierarchy always allows get to look from the pinnacle of 'I can ride on a moving sidewalk' down on, 'You can't ride on a moving sidewalk.' This mostly just amuses me. It must be a small life and a smaller mind that sees a hierarchy that small as meaningful. But, as I do, I digress.

A long while back I realized that I could hold on to the handrail, which moves at the same speed as the sidewalk, remarkably almost as if that was planned, and hold my body straight, and ride alongside. Same speed as the moving sidewalk, without any need for assistance from another person. I like this option. Even though my arm gets tired and I sometimes have to stop for a break, I make better time and I call roll alongside, rather than in front of, those who are there to help.

Heathrow has very, very, long moving sidewalks. They are constructed perfectly for this use. Some, in other airports have a wide base that make it impossible for me to get my chair close to. But Heathrow's perfect for this. So, I latched on to the handrail and off I went. Joe was not feeling well and was simply pleased to be able to use his own steam to get himself to where he was going. He didn't have a lot of extra steam yesterday, so I was glad of the ride. I was on a very long run, not having to let go at all, when a fellow cam bustling buy on the moving sidewalk. He slowed down and looked at me with a grin, then he made a joke.

I know it was a joke because he was smiling.

No, more accurately, I knew it was a joke because his eyes were smiling.

'Now that just takes all the fun out of feeling sorry for you.' He laughed a big friendly laugh and was off.

That remark has troubled me ever since it was made.

Before I tell you how I react to it ... I'd like to here what you think ... if ever a group of people could untie the Gordian knot of this joke, it's you. So ... you first, me tomorrow.

On The Plane Today

2011-11-27T00:02:00.001-05:00

Some of you have asked why I didn't name the hotels that did specific things well. Most particularly the hotel with the electronic counter that lowered, which was the same one that had the terrific questionnaire about my needs in an emergency. Well, the reason I don't is because, while a hotel may do one thing really, really, well. It may do another thing horribly.

For example, that hotel, did have a counter that lowered, But it was covered with all sorts of tourist stuff that had to be moved for it to be used. And it was moved with the greatest amount of effort made for me to see that the greatest amount of effort was made. That same hotel had a breakfast room up a flight of stairs. We disabled folks had to sit in the downstairs bar, in a cold room (why heat a room not being used) and have a wait staff run up and down stairs bringing us stuff. Sitting in a cold, dark, room segregated from others who are having breakfast really wasn't made up for by a questionnaire and a counter resentfully used.

Now, remember, I wrote the piece before I had breakfast so didn't know. I also didn't notice, until the morning, because of the way I'd been sitting on arrival, the amount of stuff that had to be cleared off the 'accessible counter'. But, the nature of blogging is that it isn't a novel, it's a blog, I had a point to make. It was about the questionnaire, which I still think is a good idea.

Other hotels might have deserved mention but ...

several had accessible rooms with wide, wide, doors down long hallways with narrow fire doors, so narrow that a wheelchair doesn't fit through.

several had accessible bathrooms that had a lowered accessible sink but had placed the mirror at standing height so I constantly shaved using the braille method to determine the degree of my accuracy.

several had wonderfully wide doors but these big narrow strips of some kind that were virtually impassible for the front tires of my wheelchair

So, I always feel that I need to be careful about what I write. I don't want to mention names because first, I'm not a travel blog writer, second, I recognize that what might be an inconvenience to me might pose no problem to someone else. So I prefer to just realize that virtually no hotel will ever get it just exactly right. I also realize that virtually no hotel gets it all exactly wrong. If you travel you need to expect, disabled or otherwise, not to be so exacting in your standards that one is never pleased.

What really pleased me, most of all, was that every single agency that booked me, worked hard at getting me accessible accommodations. They called round. They visited. They did their utmost to make me comfortable. Many of them commented to me that until they booked a room for me they did not realize exactly how hard it was for disabled travellers. Their understanding went up, so did, in many cases their activism - many were downright vocal about things with hotels. That was cool.

So, if anyone reading this is someone who booked a room for me, realize this ... your care mattered. And, I slept well every single night. I got through every door. I shaved every morning. I got fed and watered. It was great. In the end a trip is about the people who I met ... and to a one they had absolutely ... now how do I say this ...

accessible souls!

PS when home, with some time, I want to tell you about where we stayed in Wales. Really want to tell you.

How Long?

2011-11-26T02:09:00.001-05:00

She gets wonderful gentle care. I know that. I saw it with my own eyes. She came to learn from me, she was a little older than the others, she looked at me through fearful eyes. They have seen much. The life stories of older people with intellectual disabilities are almost uniformly full of hurt, and trauma, and rejection, and pain. Her eyes were the eyes of a woman who has learned submission in her manner. She approached me, having been told by one of the others, that I was going to teach the group.

In a soft voice she asked for permission to go to the bathroom. This was still 'gathering time', I was quietly sipping a cup of tea. Even though, in class time, I do not require permission, from adults, to leave the room to go to the toilet, or for a smoke, or to take a call on their cell phone. I do not need the 'power of permission giving' and do not want it given to me. I said, equally quietly, 'You don't need my permission to leave the room to go to the toilet.' She looked at me, fearfully, as if she was being tricked, 'Please tell me I can go.' There was a note of pleading in her voice. I didn't know what to do, she looked, now, terrified. I said, 'You can go to the toilet but because you want to, not because I said you can.' She went. I know she went because of the first part of that sentence, 'You can go ...'

I know the care she gets is gentle. I know, I saw it. I also saw the younger people she was with. No permission was ever asked by them. If they needed to leave the room, they left the room. If they wanted a cup of tea, they got a cup of tea. Ah, but they were younger. Much younger. They haven't walked where this woman has walked. They haven't seen what this woman's seen.

As she settled into her seat for the class to begin. I watched her. She sized me up. When she put her hand up to participate, she did so as a mammoth act of trust. She received the applause from the group upon the completion of her role play as if it was the freshest rain, falling on the thirstiest soil. She sat down smiling, with a single tear running down her face. She had surprised herself. She had been surprised by the gentleness and the generosity of the room.

When she left with her staff, a young woman who provided graceful care, I wondered.

Wondered how long those of us who care now, will have to prove ourselves to her. How long before she learns that she no longer lives in a world where of permission and punishment. How long before she can trust that 'this time' won't be like 'last time'. How long before that lovely elderly woman will take her first step forward into a day, into a moment, into life, without fear?

My God, I pray, not long, please, not long.

Moving Staircase From Hell

2011-11-25T02:02:00.000-05:00

One of the biggest challenges of having a disability, is living the life one has without becoming constantly angry or bitter. Never, one realizes in a moment of flashing perception, because of disability, but because of needless, often stupid, barriers. We are staying in a hotel attached to a shopping center. There are escalators that go down into the shopping center, but the elevators, for some inexplicable reason, have been sealed up. they are replaced with a very long, very steep, set of ramps that go down into the mall itself. I had finished work for the day and wanted to get out of the hotel, where I present again the next day, the last day of my lectures, just to signify that the day was over. Oh, and to shop a bit.

I knew I could get down the ramps, though long and steep, though they'd had slalom gates put in to stop skateboarders and to wildly inconvenience wheelchair users. But I knew, equally, I couldn't get back up, they were far too long, far too steep. I haven't been on an escalator in five years, but Joe advised that they were narrow so I could hold on both sides, that the steps ran flat for several feet before they began to raise, did I want to try. I knew that I couldn't go down them, that's just far too dangerous, but up might be possible. We went to the shopping center.

We both tried to figure out why they would have installed nice, new, lovely escalators and sealed off the elevators. How anyone could think that 'ramp' always meant 'accessibility' .... when these clearly weren't. But we went. We needed a couple of things, I found a terrific presents for Joe and for Ruby and for Susan and Belinda and Shannon, even found something little and something nice for me. All in all a success. So we went to the escalator. Luckily no one was around so I could take a good snoop. I thought maybe I could. Then I remember that choice was removed, I had come down, this was the only way up. Sometimes having only one option is really quiet a motivator.

I got up, got over to the escalator, Timed the movement and then reached forward for the sides, and stepped on. I had a good brace, holding on to each side, but feared the top. I loose balance and fall so easily. But I focused on stepping off. I made the step and then was propelled off the escalator. I had no sense of space and went reeling around trying to find a wall, or a guardrail or something to hold on to, to give me purchase,my heart was going crazy, I was terrified. Joe arrived seconds later. It was then I realized that there were two escalators and I had one more. Again, I repeated the procedure, the top now was fear filled. My body doesn't know how to regain balance at the top. 'Fall forward' I order myself. I flew off the top and then noticed that there was a little fence around the top of this one I got hold of it and stood firm. Joe got me into the chair and I almost cried with relief.

True, I got to do what I wanted to do. True I negotiated the barriers. So why don't I feel something other than anger? I suppose that maybe I didn't like the fear that was attached to it. Not the fear riding up, but the fear that comes from being at the top of a staircase, moving or otherwise, with no balance and with a momentary feeling that if I can't find something I'm tumbling over, and the stairs might have made a quicker exit down than they were a ride up. We came up to our room, even though friends were waiting for us in the bar, because I wanted to catch my breath, loose the fear, stomp out a brewing anger ... and enter to an evening of chat and fellowship not carrying anything more than the anticipation of a good time.

It was work, but it's work that I will always try to find the energy to do. Because I don't want
to ever, give up and just put up with the barriers needlessly placed in my way. I never want to become resigned to the way that things are. But neither do I want have these things in the center of my mind while the three spirits of anger, resentment and bitterness stir up the mixing pot of emotions in my chest. Barriers, built by architectural bullies and concrete hearted city planners, exist for the sole purpose of being smashed down - I know that. That means I have to be willing to swing the hammer. But, now's not the time. We went down to the bar, I ordered a cup of tea, and the chat turned to what it should have been all along, friends simply talking, planning the future, and laughing.

At one point, when we were all laughing, I think I heard the tiniest crack form in one of those barriers. It might have been it's little heart breaking because it was built to be a barrier but all it turned out to be was an annoying little piece of my day.

News Flash: Economics Disabled

2011-11-24T00:05:00.002-05:00

In my hotel room in London, I turn on the evening news. Another story about the financial crisis that overshadows Europe. A news anchor furrows his brow and asks another hard hitting question regarding disability benefits, the Britons who abuse them, and the austerity measures.

An expert talks about abuse within the system, about how the government needs to ensure that benefits are paid out as necessary but that those who habitually abuse the system need to be strongly encouraged to become 'productive'.

They speak with gravity, as if the whole financial crisis has been caused by those who fake disability, by those who 'use' their disability to reach into taxpayer's pockets and, of course, those with legitimate disabilities who have never contributed and who never will.

Everyone nods.

Focus is taken from the rich and powerful who grew rich and powerful through mismanagement and corruption. It's easier to be angry at those 'below' you than at those 'above'.

This is true 'trickle down' economics. 'Hate' trickles down. 'Prejudice' trickles down. But worst of all, 'Violence' trickles down. And I feel it. I hear it. Especially, when it trickles on me.

I am pushing down a hallway, wheels fighting against thick carpet. A fellow in a suit comes by, asks me, kindly, if I'd like some help, if could he push me. I said, 'No, carpet is tough to push on, but it gives me a good work out.' He smiles back and says, 'Well, it's nice to meet one of you people that's not simply lazy.' I stopped and stared at him and he smiled back, thinking that he'd complimented me. That his remark had risen me up from the 'lazy scum' who don't work. I took offense at his compliment. He walked off, not having been challenged in his belief, but simply determining that I was the exception that proved the rule. It was my first hint that I'd somehow become one of 'those people' ... those people they talk about on television.

I am shopping in Tescos, looking for some candies to take back to the kids. Ruby, who's five, love's the idea that she's eating candy that is from far away. Sadie, who's two, doesn't care where it's from, if it's sweet she likes it. So, I had just picked up some 'sticky toffee pudding cookies' and put them in the bag at the back of my wheelchair, when I noticed that a young couple was watching me. With disgust on their faces. At first I thought it was because people don't like seeing fat people buy cookies, but then, I got the feeling that they had classified me as a 'useless' cripple using benefit money to buy something frivolous. I suddenly wanted to explain about the kids, about the fact that I'm a working man, about the fact that I 'contribute'. But, didn't. It would have played into the idea, once again, that I'm somehow a special kind of cripple.

Bar conversations are iffy at best. But, I'd fallen into conversation with a couple and we were talking about a variety of issues. I illustrated a point I was making by referring to a television commercial that's playing here in England about child abuse. In it a diversity of children are presented, of course, as usual, diversity did not mean disability. Even though children with disabilities are more likely to be victims of violence than other children, none were represented in the commercial. 'Well, of course, not,' said the young man, 'because you can understand why a parent would want to hit a disabled child.' I was stunned, he continued, 'you raise normal kids, you feed disabled ones.' I said, 'Seriously, you are seriously saying this to me?' I thought maybe he was just trying to wind me up, but a couple seconds more of chat, and it was clear, they'd received the message that disabled people are simply 'useless eaters' - echos of a different time are still chilling.

I know that people with disabilities have been consistently devalued by society, but for the first time I feel like we are also being 'costed'. Suddenly I remember those old math and moral questions - the one's that went like this: if there are three people in a boat, a young woman, a small child and a disabled man, and there is only enough food for two, who would you throw out? Suddenly I realize how close I am to the side of the boat, and how rough the sea.

It's six o'clock.

I can't watch the news anymore. I'm afraid that again, I will learn, that the whole of Europe's banking system is about to collapse because people with disabilities eat candy

RAIMH Announcments

2011-11-23T01:42:00.001-05:00

Many of you wondered, after I wrote the post about the increased experience of accessibility, how I was finding the more social and political aspects of disability here in the United Kingdom. I wanted to write a post about that very issue and I wanted to share it as broadly as I could. So, while it will appear here tomorrow on Rolling Around in My Head ... it's up now at Canada.com so drop by there if you want a preview.

I'd also like to apologize for being so poor at responding to comments. I've been trying to be better about that. However there were several times I wanted to respond but I've found it challenging just keeping the blog going with daily posts and haven't had the time to do more than read and ponder the comments. I love getting comments, please be assured that they are all read. Evidence of this is shown in the fact that the blog for Canada.com was written as a direct result of a discussion in the comment section. I'll be home soon and be able to drop in and chat with you in the comment section then. Thanks for understanding.

Today's post follows.

Coin Toss

2011-11-23T00:07:00.002-05:00

He was standing with his mother. He was looking humiliated, he had that hunted look that those who are teased relentlessly have. His mother, looked concerned, really concerned. I was in the same aisle of the pharmacy as they were as I needed to pick up those little wipes that women use to keep their skin clean and spotless. For some reason we find that travel clogs our pores. Beside me, mom and son were speaking in whispers. He was a really handsome young man who had a strong jaw and high cheekbones. In the hollow of each cheek was a cluster of small pimples. I could see that these tiny, transient, tributes to adolescence were ruling his life. Destroying his self esteem. Laying waste to optimism. He was in pain.

I found what I wanted and rolled away. We had all seen each other. He knew that I knew. I knew that he knew that I knew. Yes, I knew he was buying spot remover. Yes, I knew that he knew that he had spots and that, somehow, that made the spots more real. It was painful watching another human being suffering. My God, how brutal the world has become. My God, how the horrid prey on any, even slight, imperfection. My God, how endless are the days lived in fear.

And I wondered what was happening in him. I wondered if he was growing brutal. If he would end up learning, not the effects of violence, but the ways of violence. Would he become compassionate or cruel? It's a coin toss isn't it. One of my most shameful memory was of a moment, a single decision that I made, in Grade 11. I was teased fairly relentlessly in school. I lived in fear of each school day. I knew what it was to be hurt, by those who found my torment just a casual past time. Me. I knew what it was like. And then, a moment presented itself when a young woman, even lower on the social totem pole than I, looked to me to end torment. I could have. But I responded to the opportunity to use the power I had with poor judgement. I was cruel not kind. I thought it would make me feel, even momentarily, better. It didn't. It's something that haunts me to this very day. Seeing that young man made me wonder. One day those zits will be gone and what will be left is a very handsome young boy. How will he use the power that his attractiveness will give him? How will he handle decisions. Will generosity win of spirit win? Will hardness of heart take the moment?

But then.

I was rolling down the aisle, chasing after Joe who was looking for me. He still hasn't adjusted, five years on, to the fact that though I'm still over six feet tall, I'm now seated. So, he loses me. As I rushed down the aisle, I saw the young man heading towards me. I expected him to look away, embarrassed about our earlier encounter. But instead, he looked at me, bravely and smiled. I nodded my head, he nodded his. A moment of comradeship. A moment that represented a huge decision on his part.

I think, perhaps, that when he grows up, if he continues to make decisions in the manner of kindness, he could be more than handsome, he could be beautiful.

Fire alarm

2011-11-22T00:05:00.001-05:00

Hmmmmm

What an interesting experience.

I just checked into a hotel and was surprised to see, firstly, that they had an electronic desk that lowered so that I could sign in easily. OK, good start. Then, for the first time ever they had a form for me to fill out indicating what help I would need in an emergency. There were questions regarding how I needed to be informed of an emergency - differing options for people who needed alternative communication strategies. There were questions as to the best way to assist me and a place for me to fill in any other needs I might have in an emergency. I should also note that there was the option to sign off refusing to answer these questions.

Now, the room is on the first floor, Joe is with me, I have no concerns. But it doesn't matter, I was asked, the information on file. I told them that this was the first time in all the hotels I'd stayed in that I'd been asked these questions. They told me that they've only been doing it for two weeks. Apparently they had been reviewed by a health and safety person who had placed an emphasis on safety for disabled travellers. So, now they have this approach to ensure that they an individualize the emergency procedure.

I was really, really, pleased to see this approach. I've written here before, and in other venues, about the safety of people with disabilities in hotels and multilevel buildings. It was wonderful to see someone taking it seriously and doing something about it.

I've been sleeping well on this trip.

Tonight, I'll also be sleeping safely.

The British Space Programme

2011-11-21T07:35:00.000-05:00

I have witnesses.

I was pushing down a narrow passageway between tables. There was just enough room for me to get by. People looked up and saw me coming and all were worried that I wouldn't have room to get by.

No one moved a table to the side.

No one moved a chair out of my way.

No one moved a coat hanging off thier chair.

No one moved a trolley out of the way.

No one created even an inch more space.

What they did was, and remember, I have witnesses.

The first diner I passed moved his plate about an inch to the left.

The second diner I passed moved her glass about an inch to the right.

The third diner I passed moved the chips on his plate closer over to the meat.

The fourth diner I passed moved his tea pot over to the other side of the table.

It was as if it was scripted.

I got by and into a larger area by the elevator and burst out laughing. Eileen who was walking behind me, joined me in laughing gasping out, "I can't believe what I've just seen."

Still, days later, I find myself laughing at the intensity with which they did what they did. So, though I didn't get any extra space, I did get a mental image that's been amusing me for days.

And that, I as it turned out, really have needed.

A Sunny Day's Choice

2011-11-20T00:50:00.001-05:00

I am in a lovely inn in Chelmsford and I've got my computer set up in the breakfast area. Joe is reading the paper across from me, I've come over to write a blog for tomorrow, this blog. But I realize, I've a decision to make.

You see, for some reason my computer can't connect through a wired connection. This inn has wired, but not wireless, so I've got to go over to the main building where they serve meals. The breakfast area, where we are now, is beautiful. The sun is coming in through louvred windows, people next table over are scraping butter on to toast. They are chatting.

We aren't.

Because I'm writing this.

That's the wrong decision, I think.

So, I'm going to leave you, enter an Internetless world for the day. And I'll start with a Twinings green tea flavoured with a hint of cranberry. That will be followed up with a chat with Joe about how we are going to spend our day.

So, I'm choosing him, and tea, and making plans for a sunny day in Essex.

A Simple Wish

2011-11-19T00:09:00.001-05:00

I just now finished doing a bullying and teasing workshop for people with disabilities. There is an hour break before I do a workshop for carers and other concerned groups. During that wait, I found a computer tucked away in the corner of the room in which I am teaching. So, I decided to use this time to write away my feelings.

Doing workshops for people with intellectual disabilities who suffer routine social violence is so emotionally difficult. Firstly, I identify with their experience at a deep level. A fat guy in a wheelchair, I expect that every time I go out I will encounter a socially negative experience. Pointing, staring, laughing, ... kids making pig faces ... adults doing fat faces ... all of it. So it's hard to spend time hearing that it happens to others, and it happens all the time. I like to tell myself that what happens to me is unique, not because I want to be the supreme victim, but because I just never want what happens to me to happen to others.

Too, as I am bullied because I am me, then the bullies won't bully those who aren't me. Well, this is so patently not true. Bullies know that I will hold myself responsible so they do too. I tell myself, I'm bullied because I'm (pick one) fat, disabled, gay, bald. So when they are asked why they bullied me, they will say, in an incredible ironic agreement, Well, he's (pick one) fat, disabled, gay, bald. So the bullying becomes just a meeting point between self hatred and another's bigotry.

Secondly, I find this hard because the stories that are told in these workshops are so incredibly painful. Words are flung, words have stung, people radiate pain. They live smaller and smaller lives. Going out less. Going fewer places. Living in rather than living out. Real lives living in captivity.

But today, in this group. When we talked about solutions. Many had some. They began to share and talk amongst each other. Giving ideas, good ones. Strategies, effective ones. Mostly, they realized that they were not alone. Me, too, there was a moment for me, like the others that we looked around and realized that we were all safe and that we were all understood.

'It's good when it's like this,' one fellow said.

I agreed.

One man spoke, quietly, that he wishes for just a few moments where he could live without fear, where he could go out and not anticipate violence. Just a few minutes.

Why is that too much to ask for?

I'm not sure, but right now, in the world we live in, it seems to be.

My How Much Shes' Grown

2011-11-18T00:01:00.001-05:00

I'm not sure if I'm imagining it but I think not. You know when you go to visit a family with a young child after a few weeks absence you really notice the growth in the child, the extent of their vocabulary, the new skills learned. When you mention it to the parents they smile at the compliment but they admit that they simply don't see the changes as dramatically as you do. They are there every day. They see the changes so gradually as to not to notice. Well, I think it's that kind of experience for me.

I see the UK only as a traveller. I do not live here so I see only a small part of life here. I see hotels and conferences centers, shopping centers and tourist areas, grocery stores and gift shops. But, even so, I think it fair to comment on what I see and experience. This trip has been a bit remarkable. It seems that accessibility is becoming a bit more standard. I've have fewer difficulties than typical and meet with less resistance than I have in the past. Now when we've called for an accessible room, people on the other end of the phone know what that means.

It was only a couple of years ago a hotel in Hull told us that the room was accessible and we drove up to a hotel with six steps up to the lobby and the room up two flights of stairs. We complained only to be told, haughtily, that the room was accessible - people rent it all the time. I kid you not. That simply doesn't happen any more. So, we've begun to relax into the trip. This may be a mistake, may lead to a fall, but it's nice to be travelling without fear at the pit of my stomach.

When I compare this trip not to the last trip but the one five years ago, when I was first in a chair, there is simply no comparison. Slowly, but surely, I find I can go more places, get in more buildings. I have not once, not once, on this trip had to go in a 'special entrance' ... which typically meant the back door way, by where they take out the garbage ... into any building I've gone into.

I know that I am going to places where tourist and convention dollars are attached to these changes. But, even so, it's nice to see that accessibility is becoming more likely to be offered and less likely to be misunderstood.

Does this mean we are making headway ... I'm not sure, but I think so.

Shoes

2011-11-17T00:10:00.001-05:00

It sounded, from a distance, like a typical row between parent and child. Child wanted. Parent said 'no'. A conflict began which will be repeated millions upon billions of times throughout all time. I pushed round the corner and found that the parent was sitting on a chair, holding those kind of running shoes which flash lights, in her hand. She looked defiant. He, her son, a wheelchair user, looked equally defiant. He wanted them. She didn't think they were a good purchase.

I didn't remark on this at all. Ordinary. Typical. Big deal. He then said something and she said, 'Like you aren't stared at enough.' Suddenly I froze. Actually stopped rolling. A chill ran up and down my back, probably in flashing sneakers. His voice rose, there were unshed tears in the tone of his voice, 'I don't care if they stare at me, they'll stare at me no matter what I wear. I like those shoes, I should be able to wear what I want. I should not have to get permission from anyone else to wear what I want.' She tried to calm him, cause he was very upset, 'It's you who don't want to be stared at, isn't it, well, then you better get a different kid.' Now she was crying, he was crying, and in truth, there were tears in my eyes too.

I don't know if sneakers were bought, I trust they probably were, but I do know that this is a conversation that they will both think about and both tell in the future, she in her way, he in his. But I wonder if she will ever think that this very conversation meant that she had done a hell of a job in parenting. He was clearly coming into his own. He's clearly moving into a 'disability pride' frame of mind. He's clearly beginning to see that others who stare are staring because they are starers - not because he is who he is. He's clearly coming to see that he needs to make decisions, not based on hoped for acceptance of others, but simply and only for himself. He's going to be a strong voice in the world, I know that because he already has one. I wonder, too, if he will regret those words spoken to his mother. I wonder if he'll understand the hurt that was caused. I wonder if he saw her desire to protect him was not the same as her acting in complicity with those who stare at him. I wonder if he saw that he had a mother who allowed him room to fight and arguement - a mother who gave space to dissent. I wonder.

Later, I thought about what the mother said, I realized that something like that was said to me somewhere. I don't remember where, I don't remember the situation ... but I do remember what it was about. I wear hats when it's cold and hats when its too hot. I have purchased these broaches to wear on the hats. One is a crown. One is a bright red hat. They are small. They are fun. Hat on hat. I like them and I get a surprising number of compliments about them. But one day, somewhere I don't remember, someone said to me, upon seeing my hat with crown, 'Like you don't get stared at enough.' I was startled by the remark and stored it somewhere inside, then forgot about it.

Until I heard it said yesterday. That kid got it right. I'm not going to be stared at more because of my hat, and, I need to remember, staring is a result of another's rudeness not because I exist. It's so easy to blame yourself for another's behaviour. It's easy to think that I need to captulate to the opinion of others. It's easy to think that my difference is my shame, that their staring is a valid social judgement. Easy. It's much harder to hold others responsible for other's behaviour. Self hatred requires accepting the verdit of the world. Pride means facing down a world who's got it wrong.

Several years ago I did a two hour documentary interviewing leaders in the disability community. CBC radio played it and it received all sorts of recognition, Life, Death and Disability it was called. In it I managed to interview leaders in the disability movement about how disability is perceived and their views of the world as it's socially constructed for people with disabilities. It was a life changing experience for me. I think, that if I was to do it again, in five or ten years, I'll be interviewing that kid. And I hope if I ever do, he'll be wearing sneakers that flash.

A Herd on Thundering ...

2011-11-16T00:02:00.008-05:00

Elephant feet!!

Always travel with elephant feet!!

The thing I have to realize is that I'm not the only disabled person in the world. Now, actually I know that. But sometimes I forget. This is particularly true when I go into an accessible room that isn't accessible to me. This just happened. Only moments ago. I'm writing it now because we've got a few things we need to do this evening and I want to have a blog for you tomorrow. See ... dedication or what!?!

Now, we came into the room, saw the bed, and panicked. It was really, really, low. Maybe fourteen inches at most from floor to top of bed. I haven't been able to get off something that low for years, years before even disability. Joe has trouble with them too. Apparently though, I've been told, there are people with disabilities who need extraordinarily low beds. So, this room would be great for them. I have to remember that while I need a tall bed, others may need a low bed. Yikes. I almost never remember to ask about bed height in my requests for an accessible room. Most rooms meet my needs that way, so I worry about toilets and showers and the like. This room is a bit odd because it has a tall toilet and a low bed.

So we called around in a panic, upsetting most everyone, trying to think about what to do. Then, in a blinding flash we remembered. Joe had packed the elephant feet. Those wonderful furniture risers that make chairs a possibility for sitting in. A few seconds of struggle later and Joe had them firmly under the bed and voila - we have an accessible bed for me.

We were given these as a gift from the folks down in Butler, PA (a shout out to Mary and Natalie) and here they are being used to make it possible for me to have a good nights sleep.

Elephant feet.

Get elephant feet.

They are light, stack together, and man, oh man, do they come in handy.

(note: no elephants were harmed during the writing of this blog)
(note: this was not a paid announcement)
(note: product placement in blog by happenstance)
(note: to the makers of elephant feet, if you need a spokesmodel, I can be bought)

Canadian Blog Awards: Please Vote

2011-11-15T12:15:00.000-05:00

Hi, I need a favour. Well two favours actually. I've been nominated for the Canadian Blog Awards this year and need your votes ... twice. The first one, now, to determine the finalists, then another in a few weeks to determine the winner. I am nominated in ...

Best Overall
and
Best Personal

I'd ask you also to consider

Belinda's Blog 'Whatever He Says' which is nominated in ...

Best Religion and Philosophy blog

and

Shannon's remarkable post which is nominated for ...

Best Blog Post

So pop over to Canadian Blog Awards to do the voting.

I thank you for your support. I'll let you know if I make it to the finals and then I'll ask for one more vote from you.

TTFN

Thoughts On A Morning in Wales

2011-11-15T05:31:00.001-05:00

I want to remember the moment.

I am sitting in a country kitchen in Wales. Eggs are frying in the pan, toast is toasting in the toaster, sausages and potatoes have been fried and are waiting in a warm oven. In a moment, between the toaster popping and the eggs needing turned, I stop to look out the window. It's a misty morning, sheep are gently grazing in the field just outside the window and the trees, leaves just touched with colour, are emerging into the dawn. It's a moment that would move a poet to write poetry, a artist to pull out paints, a mystic to fall into prayer, It's a moment I want to remember. A simple, quiet, moment.

In this moment, and in moments like these, I find real meaning and real joy. Oh, I know that I am pressed to think of my life as one big 'to do' list, things checked off, things crossed out and written over, things moved from here to there with arched arrows. I know that I am pulled by the purpose of living and by the need to make a living, and I know that I enjoy all that comes with that. I know all that. In this trip there is rush and there is bustle, there is travel and there are meetings, there is much to be done and much that will be done. But none of that, important though it is, have I tried to imprint into my memory like I have this moment. With the smell of toast and the sizzle of eggs inside, and sheep and trees and a misty early morning outside.

I remember during the controversy around the murder of Tracy Latimer, a murder made controversial only because of disability, reading an article written by a young man with cerebral palsy. He described himself as having a significant physical disability and requiring support every hour of every day. He spoke of loving his life, of loving being in the world, of quiet moments in rooms that smelled of toast and tasted of coffee. I understood that then, I really understand that now. It is in these moments that we find something deeper than self, something deeper than identity, the soul perhaps, the spirit perchance. It is in these simple moments there is a pureness of experience, a pureness of our humanity.

There are those who have said to me, in full consciousness of what they are saying, "I'd rather be dead than in a wheelchair." I've never known how to respond, beyond outrage. But now I think how shallowly these people must have lived. To think that the essence of who we are is tied in some way to any ability other than the one required to feel a moment where toast is incense, sizzle is music and where sheep graze outside the window, is to see life and living so narrowly.

So now, I type, readying to go on to the part of my life and work that people value. Things will be checked of the 'to do' list, hotels will be stayed in, lectures will be given, miles will be travelled. However, as all that happens, my soul, my spirit, my essence, will be remembering an early morning in Wales, cooking in a kitchen, and looking out the window as morning comes.

Sadly, Only I Was There

2011-11-14T00:07:00.002-05:00

Sadly, only I was there.

In line behind a young man with Down Syndrome in Tescos cafeteria in Conwy. Upon seeing him, the woman serving behind the counter called out his name, welcoming him back. She said that she hadn't seen him for a while, asked if he'd been cheating on her and going to ASDA instead. He laughed. Then she asked.

SHE ASKED.

SHE EXPECTED AN ANSWER.

"What have you been up to these days."

HE ANSWERED.

HE HAD SOMETHING TO SAY.

He talked about what he was doing. He talked about how busy his life was. He joked with her and she with him. Nothing special. Just a regular conversation.

A conversation that should have been overheard by some random geneticist, some scientist working to free the gene pool from abnormalities and differences. A conversation that would have challenged the assumptions behind the science. A conversation that would have given the lie to the idea that a geneticist is doing public good by the prevention of the tragedy of difference and disability. Yes, it was a conversation that should have been overheard by someone other than me.

Sadly, only I was there.

Rolling down the aisle of Sainsbury's, picking up a ready meal for dinner. My bag at the back of my chair growing fatter and fatter by the moment. We have little time between stops to do anything but pick up stuff at grocery stores. We cook in our room at night. Avoiding restaurant fare and therefore restaurant bills, we use a steamer to heat up food while we ready ourselves for the next day. So, I'm in places where there are lots of people just living their lives. And she was among them. Alone.

ALONE.

WITHOUT ANYONE ELSE.

ALONE.

Shopping, picking up items, sometimes comparing one against the other. Totally absorbed in the ordinary act of living. Doing what was thought impossible. She should have been seen by some random doctor, who routinely, acting on data not only a thousand years old but data that was wrong even then, tells a parent of a newborn with Down Syndrome that their is no hope for an independent future. A doctor who will tell parents to put hope aside, who will hint that their life is as damaged as their child is perceived to be. A doctor who will go home and have a quiet supper, unconcerned that his mythtake will cause tears, unnecessary tears to be shed. That doctor should have seen her. Should have been challenged by her independence. Should have been brought up short by her need for no one but herself. Should have been made to reconsider exactly what he knows. Yes it was a sight that should have been seen by someone other than me.

Sadly, only I was there.

Sitting having a cup of tea in a Costa's on the M5. Joe had gone off in search of a couple of slices of pizza at a Pizza Hut that was snuggled up against a McDonald's. I was going through the messages on my Blackberry, keeping up to date with work. Then, finished, I sat back in my wheelchair, and looked around me. To my right were a couple of people reading newspapers. One of them saw something and lowered the paper to say something to a woman, I'd guess was his mother. He pointed at an article in the paper, she leaned over and read the headline and laughed. He grinned at her. They went back to their papers. He should have been seen by some random school principle who still believes that mainstreaming has damaged education and that 'they' can't learn. He should have been seen by some education guru who bemoans the resources gobbled up by kids with intellectual disabilities. He should have been seen by those, by any, who believe that difficulty with learning means no learning at all. Yes, it was a moment that should have been experienced by someone other than me.

Sadly, only I was there.

Looking in the mirror in the disabled loo at Heathrow. There looking back was a disabled guy, holding on for dear life to a couple of bars, swinging his big butt into his waiting chair. Yes, that guy in the mirror, should have been seen by all who believe that those with disabilities live sheltered lives. Who believe that one is confined to a wheelchair. Who believe that outside that toilet door is a hospital, or a ward, or a day room - who would not believe that outside that door was the world, was possibilities, was purpose.

But only I was there.

Sorry

2011-11-13T00:06:00.001-05:00

Just before I was to begin teaching, I got caught in a situation that I didn't expect. I ended up speaking quite rudely to someone who didn't deserve it. The people who we wound in crossfire must be legion. Seconds after, I began work. My moment of impatience was in my head and I had to firmly brush it aside or I would not be able to focus on teaching, on keeping things running. So, with a mighty heave, I pushed, it slid, and the day went on.

At lunch time the woman I had spoken harshly to was passing by where I was sitting. I screwed up my courage and said, "Excuse me." She stopped and I jumped in, "Sometimes before a presentation, I get very nervous and react badly to unexpected things. I spoke rudely to you and I had no right to, I am sorry, I hope you will let me apologize." Now, it didn't go quite that smoothly, as soon as I had started to apologize she kindly began to brush it aside. But I was determined and I got it all out.

In the end she simply said, "I accept your apology."

It had only been a small moment, it had only been a little interchange, but that small moment would have grown in my mind. That small second of lost control would have soon controlled my entire memory of what had happened. And what had happened that day had been remarkable.

I don't know why I find apology so hard.

I never regret giving one.

Yet, good golly Miss Molly, it was hard to do.

But, magically, because the apology will take a big eraser to that moment in my memory. In a year or two, I'll remember a day of achievement, not, as did happen, a day when I was a jerk to someone who didn't deserve it.

Sorry seems to be the hardest word, true, but maybe because it's a word that has the hardest work to do.

Breeze

2011-11-12T00:03:00.001-05:00

(This blog is the one that appeared on Canada.com. A number of readers have emailed me to ask me to put it here on the blog to make it more accessible to them. Here it is.)

I think one of the problems in living in Canada, or in downtown Toronto specifically, is that history is just so 'yesterday'. Modern life races by at the speed of Internet and we are caught up, as I suppose we are supposed to be, in the business of living. I have reached the age where I can no longer really place things in time. When someone asks me a question about when something happened in my personal journey, I can no longer really place it. My stock answer is 'a couple of years ago' - I've said this so much that I now realize that I've lived nearly sixty years in merely two.

But being here in England I am surrounded by history. I've spent the last couple of days in London and everywhere I look I see buildings older than Canada. Here, history rises up and smacks you in the face. Like it did yesterday at Tescos, a large grocery chain, where we were having a tea in their cafeteria. I was sitting at a table waiting for Joe to come with the tray of treats. As I waited an elderly gentleman, now I'm just shy of 60 so when I say 'elderly', I mean 'elderly'', rolled in on a sleek power chair. He parked at a table near me and pulled a newspaper out of the bag at the back of his chair.

He glanced over at me and I felt a chat coming on. I was right. After a few seconds of fighting with the paper, he said 'hello'. I greeted him with a tone that said, 'I'm good to chat'. He shocked me by correctly asking, right off after hearing me speak, "Canadian?" I said that I was. He shook his head and laughed. I looked at him quizzically. He caught my look and said, "My how the world has changed."

From there we went back to his youth, born with a disability, born into life in a wheelchair, he said it was difficult to imagine travelling across the street, let alone around the world. Then for the next nearly half an hour he talked about a world inaccessible and hostile. A world without disabled 'loos' and cut curbs and wide doors and, imagine this, ramps. He said that his entire world was restricted not by his wheels but by barriers. Not natural barriers, but barriers made. He said that he never saw signs painted with hatred 'no Jews, no Blacks,' because in his world the barriers were more than just prejudicial and attitudinal, they were built right into the fabric of society. "If our most important invention was the wheel," he said, "why did we follow up with the stair?"

"I'd like to know the name," he said, "of the person who first thought that maybe people with disabilities should be allowed to feel breeze."

This led to a discussion, which Joe just naturally joined as he set down the tray and sat at the table, about the disability movement. "Lots of us were terrified of it at first, I was very hesitant about people making noise about accessibility. I had grown used to a small world a big one scared me. I was afraid that if people thought we were too much of a bother, well, you've heard of Hitler haven't you? Yes, I was afraid. And now all these years later, I'm sitting in Tescos, having tea and talking to a guy in a wheelchair from Toronto." He almost teared up as he talked.

I left that encounter changed a bit. I forget, because I came into this world walking, not imagine that I would leave it rolling, that there were those working hard and tirelessly to make the world a place where I could get on a plane and leave home, with the expectation that I would find, on the other end, a toilet that I could use and doors that I could get through. I know that I have to prepare for barriers but I also know that I can expect access. I wonder, now, too, who it was that first thought that maybe, just maybe, we as disabled people were citizens with the right to ... breeze.

What I Thought I Saw: A Remembrance Day Blog

2011-11-11T00:16:00.002-05:00

(photograph of a lone red poppy in a field of oats)

We went to the War Museum in Ottawa a long while back. We'd been to the one in London and the one in Manchester. We'd toured the various displays, we'd seen what was set out to be seen. But once, we saw more.

Here's some of what we'd managed to see, feel and experience:

We sat, huddled together with other tourists, in a recreation of a London Bunker, as it shook, and shook, and shook us - the very floor trembling, the sound of bombs falling blasted through speakers. We all tried hard to engage our imaginations, to feel the fear and the terror and the mind numbing endlessness of the minutes sat in darkness.

We rode through a recreation of a trench, luckily made wheelchair accessible, in Ottawa. Again we engaged our imagination. Each of us looked up cautiously, as if we would soon see shots fired cross the top. The earth seemed so close, the trench just couldn't be deep enough for us to stay even 'pretend' safe.

We visited the 'Animals at War' exhibition in Manchester, we were moved both by the tales of gallantry and courage of the animals as they died saving mankind. The most difficult picture to look at was a portrait of a dog, a photograph taken sometimes before the dog died in violent combat. The eyes looked out, not as dog eyes do, but instead completely tired. I'd never seen such hopelessness in the eyes of an animal before.

Ottawa was the last of these museums we visited. It's wonderfully done, brilliantly laid out. It tells story after story about loss and bravery, about love and combat, about hope and desolation. But mostly it tells the simple story of violence. I like going to these places, I like being reminded that my freedom is not a gift but a duty. I like being reminded that others fought and died, so that I might have a free voice and with that voice comes responsibility.

On our last visit to the museum in Ottawa, I realized that I had seen an exhibit not planned. An accidental display not curated by someone, not designed and set out for our education and edification. I asked Joe to excuse me for a moment and I rolled back. I was in the hall where they display the machinery of war. Tanks, planes, huge guns, imposing creations, with frightening efficiency in their lines all sat silent amidst the chatter of children and the shushing of adults. I rolled up close to a small tank. Just a very small tank. I looked closely to see if I had seen what I thought I saw. If my mind had mistakenly called me to go back. If the birth of a small hope in my heart was mistaken. Would it be there? I was sure I was wrong. I often am in these moments when poetry takes over from reality. But no. This time I had seen what I'd seen. It was there. And it mattered. On the treads that ran over the wheels that gave traction was something utterly beautiful.

Dust.

Turn Around and Face Me If You Want Tea

2011-11-10T00:09:00.001-05:00

There is something odd about the service industry. Really odd. Let me describe two situations:

We were in a bar, lovely place, and I'd been sitting waiting for service. The place was fairly empty and those that were there were drinking socially, not knocking them back, so I hadn't anyone I could watch to figure out the 'rules'. Finally, I turned around, rolled up the the bar, and was about to ask if we were supposed to order at the bar, when a young woman stepped up to me and said harshly: "We serve you at the table!" and then she pointed me back to the table I'd been sitting at. Oh. My. It's amazing how, in the face of an authoritarian order, I revert back to being a little kid getting dressed down by the principle. I got back to the table and only then got angry. A thousand witty things I could have said popped to mind, which were then pushed aside by the two thousand angry things I wanted to say. I got my tea, Joe got his beer and we got out of there.

Second incident, second night. We pulled into the hotel and I went into the pub to have dinner. Joe asked me to order him a beer while he unloaded the car. I chose a table just off the bar area. I was sitting at the table, sideways, so I could watch down and see when Joe was coming. A young fellow came to the bar, looking too young to serve in a bar, and stood at the counter. I was at maximum four feet away from him. I asked if we ordered at the bar. He said yes. Then he stood staring and waiting for me to place the order properly. I unlocked my wheels and turned to the bar. I didn't even have to roll up. I was then at the bar. Then he took my order. I then turned back to my table and started to laugh, this is absurd. But, rules are rules.

Yep the service industry sometimes because much more like INDUSTRY than it becomes like SERVICE.

I bring this up because I wonder if those of us who are in the service industry, providing service to people with disabilities, don't get caught up in the same silly thing. Coming up with 'rules' ... rules that make it clear that protocol beats out common sense every single time. Rules that communicate that the 'business' is there for the staff and that 'customers' or 'members' or 'those in care' really do muddy up the day. Human beings seem to like their rules. Human systems like their rules even more.

I get that rules need to be in place. But I also get that there is room for common sense, and in the absence of common sense, common courtesy. At some point people need to understand that their job is 'service' not 'waiting bar' or 'serving table' or even 'dressing and feeding' or 'taking and transporting. The job is 'service' ... and service is the spirit that you imbue into the tasks, not the tasks themselves.

This is an important thing for me to think about this morning. I'm about to work with 75 people, mostly who have intellectual disabilities, teaching about rights and relationships. My task is teaching, my job is service. Going in knowing that, maybe it will make a bit of difference to how I do what I do.

blog announcement

2011-11-09T13:04:00.000-05:00

Hi, there, I just wanted you to all know that I'm going to be writing blogs for Canada.com and my first post is up now. I'll be appearing there once a week, although there is no definate schedule. Drop by and tell me what you think.

Grand Indeed

2011-11-09T00:02:00.000-05:00

We are in a wonderful room in a really, really, old hotel, built in 1871. Considering that Canada became a country only four years earlier, it's a sturdy old thing. More than that, it's beautiful. Really, really beautiful. After check in, I went for a complimentary cup of tea in the bar while the porter helped Joe get everything to the room. The bar looks over what's affectionately called 'The English Riveria' ... the trees are lit up and the view is lovely. I sat having a cup of tea in a room where, for 130 years, people have relaxed after a day of work or of leisure.

Joe came and joined me, ordering a cold beer, and we unwound from the day and the drive. The day had gone well, the drive had us watching the day darken over some spectacular views of rolling countryside. Soon we were ready to head to the room. I had some work emails to respond to, Joe had some unpacking to do. Riding along in my chair down a very narrow hallway, though to be frank it could pass as a country lane hosting two way traffic, I struggled not to bang into the walls on either side. They must have been a lot smaller a century and a bit ago.

We turned into the room and I discovered a wonderfully large room with all sorts of space for the wheelchair, I was able to actually wheel in and wheel up to the desk from which I am now writing this blog. More, the bathroom has the first walk in shower that I've had on this trip, there are bars everywhere. It's completely accessible for me.

Here's what I find interesting. This is a building that was built in a different time that had differing attitudes towards disability and accessibility. Attitudes were built into concrete. But, even this old, beautiful, historic building has been changed. A long ramp leads up from the street to the lobby and the rooms are more accessible than many that I've stayed in, in modern hotels.

I keep hearing about how I have to understand that 'these old buildings just weren't meant to be used by those in wheelchairs.' No, that's true. But that doesn't mean that they can't be, shouldn't be. I'm willing to bet that those who believe that these old buildings are destroyed by the advent of ramps and adapted bathrooms would be hard pressed to even notice the changes. The building looks as if people with disabilities have always been welcome.

Trouble is, when a place like the Grand Hotel does it right, it makes it harder for people to deny that it can be done at all.

My expectations have been raised.

My consciousness has been expanded.

My imagination has been broadened.

This is, in essence, one of the reasons why I travel.