Saturday, December 31, 2011

The 'DisTinctives': a Year End Review

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.

Friday, December 30, 2011

The Talk

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.

Thursday, December 29, 2011


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.

Wednesday, December 28, 2011

The Straw

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 ...

Tuesday, December 27, 2011

The Questions Begin

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.

Monday, December 26, 2011

A Note from Me

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!

Sunday, December 25, 2011

A Time To Talk About Babies: A Christmas Blog

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.


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.


Saturday, December 24, 2011

How To Wrap A Present

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.


Friday, December 23, 2011

Three Little Words

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.)

Thursday, December 22, 2011

A Gift From My Computer

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.

Wednesday, December 21, 2011


  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.



Today is my birthday

Tuesday, December 20, 2011

And Again

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.'


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.


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.

Monday, December 19, 2011


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.

Today's post follows.

More on Yesterday

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 ...

Sunday, December 18, 2011


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!

Saturday, December 17, 2011

What The Barber Said

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'.

Friday, December 16, 2011

The High Cost of Being Disabled

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?

Thursday, December 15, 2011

Rudolph Guides More Than a Sleigh

"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 ..."


"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.

Wednesday, December 14, 2011

Car Car Broken

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.



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.

Tuesday, December 13, 2011

A Quick Moment, A Short Blog, A Big Realization

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.

Monday, December 12, 2011

A Present of Presence

(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.

Sunday, December 11, 2011

Do I Have a Point?

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.

Saturday, December 10, 2011

Going Pee

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.


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


Friday, December 09, 2011

Just An Ordinary Day

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.

Thursday, December 08, 2011

Thanks Inspector Lewis

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!

Wednesday, December 07, 2011

Bird's Eye View of History

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.

Tuesday, December 06, 2011

Canadian Blog Awards

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.


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.

Monday, December 05, 2011

Understanding Christmas

"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..'

Sunday, December 04, 2011

Ruby's Question

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.

Saturday, December 03, 2011

International Disabled Persons Day

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.