Sunday, May 31, 2009

UP

I was on my way up the ramp to the movie theatre when Joe poked his head around and indicated for me to back up and go up the other side. Apparently, harumph, someone else in a wheelchair was in the space on that side of the theatre. It was a tight squeeze to back up and turn around but I managed. When I popped up on the other side I looked over to see who was in the spot I was originally headed towards. A woman of about 60 with a lovely blanket over her shoulder and another tucked over her legs sat looking entirely comfortably in her chair.

A few seconds later her husband arrived and fussed around placing snacks on a small tray attached to her chair. Then, and this is what got me, he gave her a peck on the cheek and headed up the stairs to a seat much further back in the theatre. I looked over at Joe, suddenly thankful that he was there seated right beside me. Now I have to admit that we have always sat up front in a theatre so when I started sitting in a chair there wasn't even a discussion about where we were going to sit. We made the adaption without even noticing, in fact until today, I didn't even think about it at all.

But there she sat all alone, tucked into her chair, slowly picking Milk Duds out of a box and slowly savouring them. Alone. All by herself.

Selfish Son of a Bitch! I ranted in my head against him up there in his precious seat where he wanted to sit. "I hope he enjoys the movie," I thought sarcastically to myself. And then, the movie began, inconvieniently ending my pre-movie show.

The movie is simply amazing. I was unprepared for it, entirely unprepared. The movie is at least in part about one half of a couple who has to go on alone after a lifetime of love and companionship. I didn't expect to be crying. I didn't expect to have all sorts of emotions running around on the rollercoaster between brain and heart. The movie is simply a wonderful work of art. Beautiful to see but even more beautiful to experience, to feel.

When it was all over I slipped out and down the ramp quickly, it's narrow and I wanted to be out before I had a line up of people behind me. I waited for Joe just outside the theater and then there they came. The couple from the other side of the theatre. After exiting the door, he fell into place beside her. He took one hand and she steered her chair with the other. They walked along pleasantly chatting with each other, she said something, he laughed and then reached up and wiped tears from his eyes. I knew what they were talking about. I knew what had been said.

I know that disability breaks up some relationships and that strenghtens others. I immediately repented for my quick judgement of how they managed together with each other. I'm glad that they could both go to a movie and both enjoy it. I'm glad they've worked out what works for them. I'm glad she still has him to love. I'm glad he still has her ...

And then Joe came through the door, and my heartrate went UP.

Saturday, May 30, 2009

Home

It's almost inexplicable.

Opening the door to home after being away for three weeks, I feel as if I am silently greeted. As if there is a little portion of myself that has been waiting here, candle in the window, for my arrival home. For just a few seconds I stand in the doorway and drink it in. Then, of course, I rush to take a pee.

I had told Joe that I wanted to take Henry out for a run and I got myself strapped in and off we went. We needed a few groceries and had a couple parcels to pick up at the post office. After three weeks in a manual chair, being able to zip along was sheer joy.

So we did all that we intended to do and were on our way back. More than enjoying the rush of independance that Henry gives me, I was almost exilarating in the wonderful sense of 'ordinariness' that I get here in my home neighbourhood.

When we first moved here, I was an oddity. My size, my shape, my way of getting around all drew attention. I was DIFFERENT. But I was only DIFFERENT for a while, it's only possible to be different for a very short time. Upon repeated viewing, repeated interactions, you slip into a wonderful kind of anonymousness. I have acheived that here.

One of the challenges in being on the road, and looking different, and moving different, and BEING different ... is that one is constantly novel. One is constantly noticed. One lives constantly in the corner of someone's eye. Invisibility is impossible.

Coming home is like moving off of the display shelf.

I like my home community. I like the people in it. I like how those who once stared, now wave hello. I like how relaxed I feel when, once again, I rejoin the human race.

Friday, May 29, 2009

Introductions

I have spoken in a lot of nice rooms, so much so that I'm kind of blase about the fancy stuff available. This is also partly true because I don't use any of the buzzes and whistles. I prefer to just give a lecture without fiddling with powerpoint or other electronic gagetry. However, I spoke in a lecture hall at Temple University and at the podium they had a computer that linked to the net, so having arrived early I could check email, read blog comments and generally distract myself. Way cool.

Just before beginning I met Dr. David Mitchell who is the executive director of disability studies at Temple University. We chatted quite a bit and discovered that we had a fair bit in common. I liked him. He was there to introduce me to the morning audience of care providers, parole officers, treatment people and other such luminaries. He spoke about the university and then welcomed me and the day began.

The session went really well and lunchtime arrived before I realized it. The audience filed out and I knew in an hour a group of self advocates, who do training on abuse prevention for others with disabilities were arriving. I was going to teach my class on prevention so they could see what I did and see if there were any 'tricks' they could use in their own training. A few other staff and family were there but, let's say it was a much different group than the morning.

Just before we were to start Dr. Mitchell arrived and rolled down the ramp beside me. He asked me if there were changes he needed to make to the introduction and I described the work we were doing that afternoon. Again he did the welcome and introduction. I saw him stop at the top of the ramp on the way out to watch part of the programme.

This may seem so ordinary that a blog post need not be written about it. Well, let me assure you that it's not all that ordinary. I often do split days and I often am introduced by managers and directors (executive and otherwise) but I'm almost never introduced by the head of an organization when the audience is people with disabilities. The fact that Dr. Mitchell specifically came back to carry welcome to those with disabilities speaks well of the concept of valuing all (not some) and welcoming all (not a few). If I'm not mistaken that would be the focus of much discussion and research at Temple U's Disability Studies programme.

If I lived there, I'd enroll.

Thursday, May 28, 2009

OK, It's About Susan Boyle

I admire Susan Boyle. Not for the obvious reasons. Sure, I loved watching her sing, watching her easily jump over expectations of failure. I loved her humble interviews. I loved the dignity with which she carries herself as a world cheers an 'ugly' woman with a 'beautiful' voice.

At breakfast the other day a man walked by my table and looked down at her picture and said, 'I don't see how they can call her ugly, she looks just like my mom and all my mom's friends. When did everyone but a few become ugly?" He looked at me and said, 'I just don't get it.'

I don't either and obviously neither does Susan, because she continues to look like a woman her age. She continues to simply be who she was before.

What I admire about Susan is that she is 'out' with her disability. She doesn't hide the fact that she has a learning disability (British for Intellectual Disability). She talks about her difficulties in school. She talks about suffering at the hands of bullies because of her learning problems.

She could have chosen to 'pass' as a plain and simple woman, but she did something much braver. She came out. She said, 'Thank you for your praise, I'll take now what I didn't get then, but never you forget that I still am and always will be a woman with a disability.

I know a man with Spina Bifida who refuses to be part of the disability community, gets angry when his disability is noticed or accomidated for, he is NOT DISABLED.

I know a woman with one leg who refuses to be part of the disability community, she sees adaption as weakness and can get almost abusive if referred to as having a disability.

I know that disability has low status. And with that comes even lower expectations. But I also know that Susan Boyle can sing, Gretchen Josephson can write poetry, Raymond Hu can paint, Hikari Oe can compose ...

Disability. We're here. We're off kilter. Get used to it.

Wednesday, May 27, 2009

A Sign On The Road

Today on our way to the next hotel, yet another hotel, we drove by a place that advertised 'adult fantasies'. Hmmm, I thought as we drove by a parking lot unusually full for mid morning. I know what they 'wink wink' mean by adult fantasies. Here in the hotel they have a channel that offers adult fantasies too. In the advertising there is a picture of a woman with painfully huge breasts who looks like she'd just been basted in oil. She is looking out at me with a 'come hither little boy' smile on her plump full lips.

I flipped by the channel and found something else. Later, we brought the room to silence to read for a couple of hours. I began to think about 'adult fantasies' ... I personally don't want to be impaled on torpedo breasts or end up on the floor after sliding off oily skin. I don't see these as 'adult fantasies' at all ... teen fantasies maybe - but not adult.

Playing with the idea of adult fantasies was kind of fun, but I had difficulty leaving the teen years. Win a lottery, OK nice images come from that one but they are hardly adult. When I did try really hard and came up with things like 'world peace' I sounded a bit too much like a beauty queen.

So what is my ultimate adult fantasy? I pictured coming out to the car this morning and navigating a dangerous ramp down to the pavement. That's it. My adult fantasy is ULTIMATE AND UNIVERSAL ACCESSIBILITY - in employment, in architecture, in opportuntity, in education, in ... well, everything. I pictured none left out, none facing barriers of prejudice, of high curbs and low expectations.

I pictured going into workplaces and seeing those with a variety of disabilities performing alongside workers from a variety of places with a variety of beliefs from a variety of backgrounds. I pictured never having to wonder if I could get in. I pictured never having to wonder if I would fit in. I pictured a society that recognized the normalcy of abnormacy.

It's a wonderful adult fantasy ... That's mine ... what's yours?

Tuesday, May 26, 2009

Door

There was a small rise into the bookstore and I almost decided to forego the pleasures within. One of my favourite ways to spend a few hours on a weekend is browsing through books and then looking at my purchases while having a cup of tea. We parked and I asked Joe if he was up to the challenge, he was, I was, so we decided to go ahead in. As Joe was pulling the wheelchair out of the trunk an elderly woman pulled into the disabled parking stall beside us. She was up and out in seconds.

We followed behind her but had to pause to let a car pass by. We then noted that she was standing at the door of the bookstore, turned looking at us, holding the door wide open. I wasn't even sure that she had noticed us but was pleased that she had. Joe said,'Great' and we gunned it to make it up the hill and straight through the door. Once in the vestibule, there was another door to be got through. We thanked her for holding the door as I reached to pull the next one open.

"I can return your kindness now,' I said and she smiled brightly. She told us that she was 92 years old and she was never tired of giving or receiving kindness. We wished her well, she wished us well and the browsing began.

It was hard to notice, at first, because I go almost into a Zen state of calm when I'm in a bookstore. But notice I did. The day had taken on a slightly brighter hue, a slightly more fragrent scent, and time passed in a slightly more gentle breeze. I was, oddly, in the murder mystery section when I had to sit back in my chair and just close my eyes for a minute. I didn't realize how sensually one can feel the kindess of another. Its like your soul is being slightly caressed.

For the rest of the day I tuned my antenna to small acts of kindness. I'm sure each time I saw one there was always the flicker of a faint smile on the face of those who gave that echoed on those who recieved. I'm not sure anyone noticed how even the space around the act radiated somewhat.

None of what I saw were big moments of charity or heroic acts of generosity, these were moments probably forgotten about, tragically forgotten about, seconds later. For me, though, it's almost a day later as I write this and I am grateful for having this blog to write. I carried the memory around with me for an entire day, turning the moment and the sensations around in my head, waiting for the inspiration and the opportunity to write this all down.

I want to remind myself about the power of small moments that are created by those with big hearts.

Monday, May 25, 2009

Memorial Day

At first I didn't understand why her face came to mind. It is a distinctive face and I knew immediately who it was. The moment and the memory combined to grip me. Only later I realized that we had just driven the route that I drove the day she and I met. She was a tiny woman with a huge file. Her body was riddled with disease, she would not live long. Her desire, not for life but for a peaceful death, was plainly spoken.

Much of her life had been lived on the streets. Victimized as a child, routinely raped as a teen, destroyed as an adult - she had fallen, hard, through the cracks. Finally discovered, she moved from the street to care. She had never had a room of her own, a home of her own, a place to simply lay her head and sleep. She was grateful. Tears formed in her eyes as she kept saying 'thank you' 'thank you' 'thank you' to all who would listen.

In my meeting with her, I asked her what she wanted from us. 'Nothing,' she said quickly, not wanting to presume to ask for anything more, but then a pause, 'well, maybe ...' I leaned forward, it was one of those moments of immense trust, she said simply, 'can you keep me safe?' Her hand reached out and took mine, she looked me in the eyes and wanted a promise.

I know that human services is not always safe, not always a place of sanctuary. I know that the statistics predict much less than safety. I looked to the staff of the agency, frontline and management, I saw determination in their eyes, they both nodded. I said, 'Yes.'

That promise has stayed with me ever since. I think of it often in my work. As we in Vita constantly struggle to improve our 'roadmap to safety' as we continue in our desire to grab the system by the lapels and demand change, I think of her. I think of her simple, simple request, 'Can you keep me safe?' It's the least we can do, it's the least we ought to do, it's the most we can ever give.

Here, in the United States, today is Memorial Day. A day to remember those who fought wars against tyranny and injustice. I choose, instead, to remember her. A woman who survived on the margins, a woman who's body was broken on the long drop from societies embrace. She fought her war in her way, she fought against those who would take her body and soul. She saved one while losing the other.

I can't imagine the courage it takes to surface from a life of pain, hurt and sorrow and ask humbly for sanctuary, safety, solace. I can't imagine what it would have cost us all should she have been hurt again, here at home with us.

Today I remember one who endured.

Today I remember a promise made.

Today I remember why ...

Sunday, May 24, 2009

Orange

Bold and unusual, yes, but I decided I wanted a change. We had a few hours to ourselves while on holiday in Florida so we headed over to a Big and Tall shop and I picked up a wack of new shirts. I decided to lighten up and picked a yellow shirt, an orange shirt and a white shirt. I typically don't wear any of those colours but I wanted to break out of dark colours. Joe was thrilled and compliments me ever time I put one of the shirts on. I was getting used to being a little bit more sartorially daring.

As we left Halifax, we had one more breakfast on the harbour and then I waited in the lobby with my book as Joe headed up to call for the Bell Guy and arrange for the car to be brought round. I was sitting comfortably with my sippy cup of hot tea beside me. I'd read a few pages and then watch the activity around me in the lobby. I was relaxed and ready to go on the next part of our journey. I was wearing my yellow shirt and was feeling good. Dangerous waters these.

I began reading again and then a shadow came over me and my book, I looked up to see what was blocking the light and saw a kindly face of an elderly woman. She smiled at me and said, 'A little word to the wise, darker colours would suit you much better.' Then she was gone. She dropped her little hint and then motored on without a thought for how her little bit of advice might affect me.

Suddenly, I felt shamed and stupid. I know that bright colours only call attention, that's why I never wore them. Time crawled slowly and beads of sweat ran down my back. I just wanted Joe to show up with the cart, I wanted to get the hell out of there. Soon enough, but not really soon enough, Joe was there and we were in the car and driving out of the city.

A couple times I began to formulate the words to tell Joe what had happened and found that I couldn't. These things sometimes hurt and upset him more than they do me. He gets this 'protective' kind of thing going and I have to direct his energy elsewhere. So, I didn't tell him. Still haven't. I don't know how much of my decision is protecting him from his own anger or my shame at being of the size that people feel free to make hurried hushed comments to ... not sure yet.

Then this morning as we were getting ready to go again, Joe offered me a choice of three clean shirts. Nestled between two dark ones was the light orange one. I almost went for the dark green but then thought ... WTF, I'm 56, I'm fully employed, I'm loved, I'm respected, If I want to wear orange, I'll wear freaking orange.

So for the whole day I wore orange. Not only that, I went shopping in orange, I went for tea in orange, had lunch in orange. I sat tall and wore light colours. I decided that the decisions were mine, why would I give them away. I waited for adulthood so I could make my own decisions. Well, I'm gonna freaking make my own decisions.

And, the coolest thing, I caught a couple people smiling at me today, and you know what I'm sure they were thinking, 'Cool shirt.'

Saturday, May 23, 2009

Yes, This Is On The Test

Joe has asked me, not repeatedly but regularly, if I'm gonna blog about the movie theatre. For someone who writes immediately about an incident regarding disability, to let something slide is worthy of note. I didn't write about it because I didn't know how to think about it. So, as I sat for 10 hours in a car today with nothing to do but think, I decided to just write what happened and see what you think. Here it is ... at the end there will be a quiz:

We decided to kill some time on a weekend by going to a movie. The only movie we wanted to see was playing in a theatre about 40 miles from our hotel. We had the time and the inclination so off we went. We had a wee bit of trouble finding the theatre and were glad we'd left 'being lost' time in our plans.

We got there and were surprised that the door was locked. We could see staff inside and the movie was scheduled to start in just over 15 minutes. So we made ourselves very visible and waited. Shortly a few other people came and went in through the center door which was open. As it turned out, they'd unlocked the center door and the other 8 or 9 doors were left locked. As it happened the wheelchair door was one of the ones left locked and it was outside that door that we waited. Very visibily, me in a wheelchair.

I've always been annoyed at the thoughtless planning of others. When we go to a supermarket that has an accessible checkout and they only have one aisle open and it ISN'T the accessible one, I get pissed. If you are going to open only one, open the one that EVERYONE CAN USE. It seems like a simple request. Not looking for special treatment just inclusive treatment. I felt the same way about the door. If you are going to open only one, why not open the one that EVERYONE can easily use. The center door, which we did use, was actually a bit difficult to negotiate and we had a bit of a struggle.

So, when we bought the ticket, I told the clerk about the locked door and the struggle to get in. I suggested she tell a manager about the problem and have the door unlocked right away. She stared at me with complete indifference. Now I know she's getting paid next to nothing and it's a thankless job but still, I had been nice when I could have been nasty. I knew, just knew, that she would say and do nothing.

I paused for a second and said, 'You aren't going to do anything with my request are you?' She stared at me now with hostility, 'what do you mean?' she asked. I said, 'I can see it in your face that you don't care about what I asked for and that you aren't going to do anything with my request.'

'YOU ARE SO RUDE!' she practically shouted at me, 'You don't know what I was going to do or what I was not going to do. You are a rude, rude man.'

'Well, were you going to say anything?'

'I am working here selling tickets, I can't go running off looking for a manager.'

I did note that she didn't answer my question but I just took my ticket and rolled away. She kept muttering about how rude I was.

Now, I didn't write about this because her anger at my comment took me aback and made me wonder if I had been rude. I could have sworn that her face indicated a complete dismissal of me and my request. Joe felt the same, that she had no intention of relaying my concern or request to anyone. I didn't write about this because I thought maybe I asked the wrong person to care, she only had to care about getting my ticket, she wasn't paid to care about my access - but should you have to be paid to care for another's inclusion?

The Quiz

1) Was I rude?

2) What should I have done instead?

What's rolling around in your head?

Friday, May 22, 2009

Moment By Moment

moment

After listening to others tell their dreams, she gets up. She is tentative, shy. There is about her the sense that she could bolt from the room at any moment. We all wait. The room seems to understand that what is about to happen is important. There is a hush. Now she is standing beside me. A small smile flickers on her face, she is proud of herself. I know she is standing very, very tall. I ask her, like the others, 'What is your dream for yourself.'

Her eyes dart around the room. They are all listening. So am I. She clears her throat and in that instant I know - she's never told anyone before. She's never put the dream in words. She's never shared this private private thought. She leaned forward. I leaned in. Then, she spoke. The words were out. Her hands went to her face, she couldn't believe she said it. She couldn't believe that the words formed in her mouth. She must have felt that she was standing right next to possibility.

Finally she closed her eyes and a tremour went through her. Thrill. She managed to ride the wave and stay standing. The room burst into applause for her and she inched her way back to her seat and sat down. I watched her go, feeling the warm heat of her dream as it rested, for a moment, in my heart.

moment

He, too, is a quiet man. He is well spoken but the words are almost in whisper. A polite man, a gentle man in the very real sense. He is standing in front of me, we are alone in a crowded room. He has shared, earlier, that he had been a victim of bullying and teasing. He had talked about being brutally hurt by the meanness of others. I listened carefully, we listened carefully. Then speaking to everyone in the audience through him, I talked about his value. I talked about how he needed to treasure who he was, that others can't take from him who he is and they can't diminishe what he's become. Now he is telling me that he had thought about what I had said, 'For the first time I feel proud of myself.'

moment

Roll play: woman says to staff 'this is my dream' staff says 'I don't believe in you, you can't do it.' 50 people with disabilities surround the two with the low chant 'Believe in yourself, believe in yourself, believe in yourself'. It seems almost a magical and mystical moment. I hear such gentleness in their tone, I feel the meaning they put into the words, I know the faith they have in the gesture. More, I see the one in the roll play close her eyes and let the words of reassurance and faith rain down on her, she is not now in a roll play, she is now getting what she needs.

moment

Arriving back at the hotel, exhausted. Ironically, I never dreamed it would go that well. There are things I'd change, things I'd do differently, but for what it was and what I planned ... I'm happy.

Thursday, May 21, 2009

Dreaming During the Day



Finally the sun came out in Halifax and we spent some of the day doing touristy kind of stuff. We went to Peggy's Cove and drove along the ocean. Being B.C. boys we both miss the smell of the surf so even though it was still coolish in the morning we drove with the windows down. I was extremely quiet and Joe respected my need for time to think.



A tall ship from Chile had arrived in the harbour so we went for a quick look. Joe always gets a swashbuckling look on his face as he daydreams about what it was like to sail the seas in these big beautiful boats. I too marvelled at it but was distracted.



So I spent a great deal of time sitting outside and thinking. After breakfast with Deb Seaward my hostess for the self advocate day I'm doing tomorrow (today as you read this) she told me a bit about Marcy Moses. The day is being held in her honour and is inspired by her life. Marcy is a woman with Down Syndrome who would have celebrated her 22nd anniversary this year as a very married woman, she left behind a husband and a family who mourn her dearly. She left behind a community that misses her. Money was donated in her memory from so many different sources and when it was discussed how to spend that money, it was decided to do a day with self advocates, for self advocates about the power of dreams. Marcy had dreamed big and as a result of her dreams she lived a life unexpected.



I always take my lecturing and teaching seriously. Very seriously. Even though I use humour as a teaching tool, I'm very earnest in my ambitions with what I do. I felt the weight of the expectations on me as I prepared. In the end I have created a 'Dream Box' that I'll be using tomorrow in my teaching. It's new to me and idea I had while sitting and thinking about a woman who, though borne into a world with small minds managed to live with a big heart. I can't imagine the sorrow her husband feels. But I can imagine the importance of tomorrow.

And that's what the dream box is about - tomorrow. Every tomorrow. Because every tomorrow promises to be better than today. Every tomorrow promises what today denies. Every tomorrow brings new hope. I want an audience that understands that tomorrow's dream is as important as today's accomplishment. Marcy understood that. Though I never met her I celebrate the life of one who dared to dream during the day.

Marcy tomorrow's for you.

Wednesday, May 20, 2009

Changes Coming

Dear Readers,

Chewing the Fat is about to undergo a name change. The address will still be the same, davehingsburger.blogspot.com , there will still be daily posts on the same type of topics, only the name is going to change. I expect the change to take place this weekend some time. I have a couple of ideas rolling around in my head and haven't yet decided for certain. I just thought I'd ward regular readers so you won't click away from the page figuring you've got it wrong.

Thanks,

Dave

p.s. I'll be back in the morning for my regular post

Frog Hollow

We had a few minutes before the movie so we decided to browse a bit in the mall. A quick look at the directory told us that there was a bookstore on the second floor called, Frog Hollow Books. Well, who could resist?

I love bookstores. All of them. The big stores with the coffee shops within, the on line stores with their amazing discounts, but especially the independant bookstores with their wildly eclectic collections. Joe and I, each, almost immediately found books that were exactly to our tastes and we were enjoying just looking around. It's not a large store but it has a lovely atmosphere. We had just decided to have lunch in the food court rather than the restaurant so we would have more time to look around when I was approached by one of the staff.

She was a friendly woman who first asked if we were finding what we needed. We both said that we were. She then started asking me about how I felt about the accessibility of the store. They are moving in a few days and they've been working on floor plans. Apparently she spent several hours on the computer trying to find if there was a suggested width for aisles which would accommodate people in wheelchairs. Further she explained to me that since she couldn't find one they'd decided to make the aisle two inches wider than the ones in the present store.

I had to admit that I didn't know what the recommended width was but that I could tell her that these aisles were working for me and I have a wide chair, I would imagine that two inches more would accomodate most chairs, including power chairs. She seemed pleased and left us to get back to browsing. I called out to her 'Thanks for even thinking about it.'

We bought our purchases and got the 'we're moving thanks for shopping discount' and we wished them well on their new store. I really hope they do well, they deserve to. Accessibility is all about attitude, attitude is all about graciousness.

Here's a shout out to Frog Hollow Books in Halifax. May your attitude be contagious. May your success be life long.

Tuesday, May 19, 2009

Victoria Day

It was freezing cold this holiday Monday.

But you know what I did?

We went to a mall.

We bought a blanket.

I snuggled under it.

And slept.

God bless cold and rainy days.

Monday, May 18, 2009

Seeing Is Definately Not Believing

I had an astonishing insight. Astonishing. Now that I've had it, I wonder if I've really always known, but I don't think so. Not like I do now. And it happened in the lobby of a hotel.

Joe and I were checking out of the hotel where I'd been speaking at and attending the Canadian Down Syndrome Annual Conference. There was a small problem with my bill so I ended up having to wait as they tried to find a charge and add it to the tab. Joe went ahead to help with loading the car and I sat quietly looking around the lobby.

Here's what I saw:

Two little girls playing around the big overstuffed chairs. They were bewteen four and five. They both were blond. Both had pigtails. I saw only one face, as the other was across from her playmate with her back to me. The face I saw was a chubby, dimpled, smiling one. Too, it was the face of someone with Down Syndrome. But I smiled because of the joy the two girls were experiencing at play. One of them had a small green change purse and it was the center of all their activity. The world did not exist for either of them outside the small ring in which they interacted. I watched and envied, as adults often do, the ability to shrink the world to fit just you and yours, the ability to play freely and laugh easily. Others smiled at them similarly. I caught the eyes of others watching, we all grinned. All knew what each other was thinking.

Then, as I was still waiting, a woman - prosperous in her 30's stopped to ask something at the desk she looked over and caught sight of the scene that I have described to you. Her face crumbled into sadness, 'Poor little mite' she said. I was startled in that I haven't heard a child refered to as a mite in ... well ever. I didn't know for sure what it meant. But there was no mistaking the 'poor little ...
I looked back over and tried, really tried to see what she saw.

Here's what I saw:

Mom came over and little girl in pink, the one who's face I'd seen, lifted her arms. Mom swung her up and hugged her, gave her a peck on the cheek and then set her back down into her world of play. Entirely natural, entirely normal, completely unremarkable.

I glanced back and saw the look of sadness remain unchanged. My attention was called by the clerk and I signed off on the bill and began pushing myself over to the car. Joe magically appeared and he got me over to the door. The 'poor mite' woman was ther and I stopped and said, 'I'm sorry, I over heard you remarking about the child in the lobby, what did you mean 'poor mite'.

She looked at me startled at being spoken to, startled at being overheard, she said, not brusquely but not friendly, 'Well, didn't you SEE?'

Obviously she saw something very different than I did. She was looking at a scene through the eyes of someone confirming bias. But then, so was I. She was looking at the scene with prejudices firmly in place. But then, so was I. I don't think I ever really realized how different eyes can see the same thing so differently.

Seeing, as it turns out, isn't believing. Seeing is simply confirming. What would that child have had to do in order to be smiled at ... perhaps even valued? I think, nothing. Her existance as a person with a disability eliminates the possiblity, in the mind of some, of worth.

Poor mite ... well, I pray she one day might ... be valued and loved just for being exactly who she is ... exactly who she becomes ... exactly who she might be. I pray that she be seen, really seen, for who she is, not through the filter of prejudice and preconception.

Pity does not erase potential, it just makes victory a little more tasty.

Sunday, May 17, 2009

Kelly

Today I had the honour of presenting a session at the Canadian Down Syndrome Society's annual general conference here in Halifax. Not doing the keynote was a bit of a treat, so I was able to sit back and relax and watch it all unfold. I heard an excited, 'Hi Dave' from a Kelly, a fellow with Down Syndrome from the interior of British Columbia. I've met him a number of times and he rushed over to catch up. Again, I was taken with how much life he is living when I know so little was predicted for him.

I asked if he flew from Kelowna and he answered, with Down Syndrome exactness (does anyone else know what I mean) 'No, I flew from Kelowna to Vancouver, from Vancouver to Calgary and then from Calgary to Halifax.' Wow, that's a lot of flying. I shouldn't have done it, I know (I came from an era where people with disabilities weren't allowed to even dream of independent travel) but I asked if he'd come on his own and he said, confused, 'Yes.'

He told me, briefly of his involvement in a self advocate group and his work on medical issues and access to medical care for people with Down Syndrome. He spoke with the clarity of a seasoned advocate. Kelly knew who he was, what he was talking about and the importance of the issue. Wow, encore.

Then after he left me and was returning to his seat a young father was walking his little boy with Down Syndrome. Walking was still an adventure of teeter and fall for the little boy but he was putting his whole effort into it. At one point the boy looked like he was going to fall over and Kelly, as quick as magic, put his finger out for the boy to grab. Then Kelly, the boy and Dad walked a few steps until the little one found his footing again.

Never was a picture more perfect. That little hand with it's tiny fingers holding on to the hand of an elder in his community. That little boy will walk in the path that Kelly made. That little boy will go to places because a thousand Kelly's already gained ground for him. That little boy will owe much to the love of his parents but he will owe much to his other family. The family of people with Down Syndrome. The people who have integrated schools, depopulated institutions, embraced community. That little hand held on for dear life ... a life he'd already been given by two parents and a hundred thousand brothers and sisters.

Saturday, May 16, 2009

Teeter/Totter

When I was a boy of about 5 years old I already knew that I was different. I also knew that difference was punishable and that punishment could be meted out by anyone, at any time, for any reason. Punishment could come suddenly, it could come in any form, it could come from any one. Trust no moment of joy for the next moment could just as easily be one of pain. Trust no sunny day for the next day could harbour storms. Trust no one who pretends friendship, because pain lay waiting in the shadow of their smile.

I remember once being at the small park in the small town where I grew up. It was the typical sort of park with swings, slides and the teeter/totter. I was swinging away on the swings. I loved the swings, I loved the sensation of flying and I loved the sheer solitary nature of the pleasure. Other kids were playing in the park. Only 5 I knew to be careful of other kids. I was already 'fatty fatty two by four can't get through the kitchen door'. Avoid. Disengage. Invisiblize.

One of the boys came over and offered to push me on the swing. I needed no such help and said so. To my surprise he didn't do anything. Instead he got on the swing beside me and joined my activity. My heart burst with hope. He was doing something with me, not to me, surely, maybe, a friend.

Then done with the swings he suggested the teeter/totter. He got on one end and I the other. We got it going, even with our weight differential, he managed to go high and land low. He was smiling and laughing. So was I. Until... clouds came. Suddenly he stopped. I was suspended in the air, he was firmly on the ground. He called his friends over. Why i hadn't asked myself about where they'd gone, I don't know. I was 5, I guess I hadn't learned all the ways of cruelty yet.

They stood and laughed at me up high. They joked about how much it would hurt if the other boy just jumped of and left me to plummet to the ground. I imagined it before I felt it. It hurt more in my imagining, it hurt more in my heart, it hurt more in my soul, than it did in my body. It hurt me deeply. So deeply that it's a memory that I've never forgotten.

As such I've grown into adulthood wherein I don't trust much. Last night I woke to a panick attack. Sense of worthlessness flew round me. Sense of despair overtook me. Sense of hopelessness filled me. And the day before, I had such a wonderful day, I had an audiences firm applause, I had people with disabilities and their families thanking me. I had moments that I treasure. But they didn't matter. I had risen high and was simply waiting to be brought low.

It's like a playground lesson has run amok. It's like I need to get on a teeter/totter with someone I trust and ride it through till we both get off, equally, no pain, no fall. But I'm too old for that.

All I know is that sometimes I'd like to ride on the teeter without bother of the totter. If that makes any sense at all.

Friday, May 15, 2009

I Surrendered to Dorothy

Something was wrong. I was sitting up on a stage getting ready to give a lecture to staff and other care providers on self esteem. But instead the audience was at least 50% comprised of self advocates. I called up Dorothy Doyle my contact with Summer Street Industries and asked for clarification. She asked if I could do an adapted lecture that would meet the needs of both staff and those with disabilities.

Now I do workshops for care providers. I do workshops for people with disabilities. I have never attempted a joint day, the audience needs and perspectives are quite divergent. I gulped and quickly explained to Dorothy how that just wasn't possible. Not for me, not with my skills, not with 5 minutes to consider and to prepare.

Well, after the introduction happened and I was on, I figured - what's the worst that could happen, we are beyond the days of public stoning. And and I went for it, quickly in my mind scanning for stories that could be told in one way for staff and then turned into roll plays for the self advocates. I knew that I'd have to have to really use my voice in order to capture the intent and the meaning of the stories to help understanding, I'd have to rely on the good humour and the good will of those there.

WOW.

I had a great day. In a few weeks I am going to be doing the keynote at the 'Both Sides Now' conference in Toronto. I had been thinking about how to do a integrated keynote that managed to capture the learning styles of a vastly diverse group of people. That conference is for both people with disabilities and for their care providers. I had been panicking about what to do and how to do it.

Not any more ...

I'm pumped, really really pumped ... I had a brilliant time, I found creative ways to work two audiences, two sets of needs in a seamless fashion. Sorry for going on and on ... but I learned something new about me, as a presenter, and about educating people ... not staff, not self advocates, people.

And I'm Jazzed.

For those coming on June 2nd ... hold on to your hats, do I have a show for you!

For information on the Both Sides Now conference visit www.vitacls.org or contact rcastronovo@vitacls.org.

Thursday, May 14, 2009

Pity About the Grapes

Have you ever seen skateboarders standing at the top of an impossibly sharp drop. They've got helmets, knee pads and balls the size of grapefruit. Well keep that picture in your mind for later on, oh, the picture about the sharp drop, not the grapefruit.

Joe and I are seasoned travellers and when we book a hotel we know all the questions to ask. Assessibility needs to be universal but it doesn't have a universal definition. So we ask about bars in bathrooms, wide doors, elevators (yes were were in a hotel where their accessible room was up a set of stairs). For the most part the people we speak to on the phone are very accomodating and quite truthful when they answer questions. So we are seldomly surprised.

Well, we were surprised yesterday. We arrived at our hotel in Quebec City to find that it's on a hill. The hill runs closer to 90 degrees than I thought legally possible. We parked beside the hotel and realized that they launch the space shuttle from a similar postion. Pedestrians were holding on to their hats and walk/running down the hill in order not to lose balance.

Joe got the wheelchair out first and then I struggled out. Given that I don't have much feeling in my feel my balance was now way way of and I had to hold on to the car in order to stay upright. Finally I was in my chair. I had my trusty gloves on. I am pretty good with hills and have strong hands so I can break the speed. Joe simply said, 'Whatever you do, don't let go.' We were off. I aimed for the door. We got in by the Grace of God, good aiming and grapefruit.

Getting out of the hotel was even more dificult because they park the car a block away, around a corner. This is Valet parking too. The Valet guy offered help but I think he was just wanting to see how this much human flesh could ride down that much slope. We said we'd be ok and we took of with a Vulture of Valets watching with morbid interest. We got to the turn on to the side street and I noticed that the sidewalk was ramped. As we were already pointing down, the ramp would put us at an even more dangerous angle.

We braked the chair. It wouldn't hold. We got my feet down and I stood up. Joe held on to my arm as we took a couple steps together onto the side road which was considerably flatter. Once in the car I wouldn't breathe normally again until somewhere around St. Louis de HA! HA! (Check it out, it really is a town and we really drove through it.)

Now we have a new question when booking a hotel. Do teenagers with Basketballs in their scrotum use the street in front of your hotel as a half pipe?

You may want to use it too.

Wednesday, May 13, 2009

Where's My Cone Bra?

We glanced at each other and burst out laughing. It was one of those odd moments that is both humourous and horrific. For about 15 minutes in the car we'd independantly just start laughing. Usually an uncomfortable giggle.

Then I said, 'Well, we know what the blog is going to be about tomorrow.'

Joe said, 'Really, you are going to tell people about that?'

I said, 'Yeah, it's funny.'

He said, 'You've lost perspective, you tell your life in front of audiences, you divulge private stuff on the blog, you know there are some things you just don't share.'

I took a wee bit of offense, 'There's lots I don't tell people.'

'Well, Madonna,' said Joe, 'what just happened belongs in that list.'

'But,' I sputtered, imagining writing a very funny blog.

'You teach others about boundaries, Dave, you need to practice what you preach.'

'Shit.'

So, I was going to write a very different blog today. But I'm choosing, and it is ultimately a choice, to listen to Joe's advice. He's right more than he's wrong and he's only once ever asked that I not tell a story. And that was over 30 years ago. So I can't call him over controlling.

Knowing what's public and what's private is a huge skill. It's one I teach, and, clearly, one I'm still learning.

Tuesday, May 12, 2009

Sunday With Joe

We left the building just a bit before eleven and were surprised, the wind had teeth. Somehow we expected that as it was spring, there would be springlike weather. This is Canada we told ourselves and decided to continue on our jaunt. After one block we had pared off a trot through Queen's Park, after a second we decided to simply get a hot dog from a street vender and then go to a pub.

It had been a long time since I had participated in the wonderful opporuntity of garnishing my own dog. For several years I've sat in the car while others, thankfully, got me what I wanted. I have never once complained and couldn't even explain - the dogs just weren't the same. So when the woman handed the steaming treat over to me, I added onions (exactly the right amount) and mustard (exactly the brand I use) two pickles (more is greedy, less is silly) and a touch, a whisper of relish. Joe was equally careful in the preparation of his and, both done, we headed to a place where we could sit and eat.

We stopped at a small park a mere two blocks from the pub. I sat in the open air, not in a car seat, and bit into my dog. My perfectly dressed dog. And it was spectacular. Really, incredibly, edibly amazing. As I ate I realized that, as I have been in my chair for over 3 years, unable to stand for about a year and a half before that, it's been nearing 5 years since I've had exactly the hot dog I've wanted.

All because my world changed. I bounce along atop my power chair and I am back doing things that I thought lost to me forever. I'm about to go on a two week lecture tour and I will be in the manual chair the whole time. That's ok. Really. It's ok because I know that I can live my life with just exactly the amount of relish that I want to ... at home where it matters.

I had all this planned without telling Joe. He loves to go for walks, he loves to sit in a park with a veggie dog, he loves to stop by the pub. I think, maybe, he thought these things were slipping from his present because they'd become part of my past. But now we were out doing all of them again. He's never complained, but I'd planned this little outing to let him know that there's life in the old boy yet.

And, you'll never guess what happened. The pub we went to, the only one on the strip that has a ramped entrance, has changed. There at the back they've built an accessible bathroom to replace the one down the ricketty set of stairs. A walk in the park, a frank with two pickles and a place to pee!

Hot dog.

Monday, May 11, 2009

Shameless Promotion

For those who are interested, I'm speaking in the Toronto area twice in June ...

On June 2nd I'm speaking at the conference for Self Advocates and their Care Providers ... Both Sides Now ... and by the by Justin Hines will be playing at this conference - his new CD is just being released, check him out. He's an awesome musician and I'm excited to meet him.

and

On June 19 I'm giving a conference called Self Awareness, Self Esteem and Self Advocacy ... this is a conference primarily for care providers.

More information can be had by finding the flyers at www.vitacls.org

or by calling Rose at Vita ... 416-749-6234 and asking for Rose to send you the details via email. If you are registering as a result of this notice, please let Rose know.

Hope to see you there ... anyone attending who is a CTF reader, please, please say hello. I like to meet you.

Zoo Station: CTF Book Club



A Book Review by Shannon.

I didn’t expect to like this book much. When Dave recommended it to me, I heard the words “1939”, “Nazi”, and “disabled”, and that was enough to turn my stomach. While studying European History in university I was immersed in that place and that time, and that specific aspect of Nazism, and to be honest I didn’t care to read a single word more about it.

Zoo Station surprised me. It wasn’t the screaming cauldron of fear I expected. To his enormous credit, Downing manages to bring some sweetness and some life, and some modicum of relief to the subject at hand. His writing is deft and smooth, and he succeeds in turning a novel that might have been mired down in its own ambitions into a fast-paced and rather gripping story. Thankfully, he widens the setting of the novel so that, by the end, you’ve visited half of Europe with the hero, from England to Czechoslovakia. This is one of the keys to the novel’s success – staying within Germany would have weighed the book down. The skies always seem to be leaden and the clouds concrete when you’re in Nazi Germany. Like Stalin’s Soviet Union, everything feels so heavy and frightening.

The protagonist, John Russell, is one of those reluctant heroes whose circumstances maneuver him into a life he didn’t expect. I like this technique in a book – the way a character is forced to do something he’d rather not do, and the readers’ uncertainty as we watch to see whether he’ll be able to pull it off. In Zoo Station one of these circumstances, a critical one, involves Russell’s discovery of the Nazi intent to euthanize the disabled. He is made aware of the policy through Tyler McKinley, a colleague. Tyler is an American journalist who is in contact with a woman – a former nurse – whose daughter is disabled. While working at a hospital, the woman overhears conversation about a government memo concerning the best way to change the laws to allow the killing of ‘incurables’. The woman searches an office for the letter and takes it away with her, going into hiding with her daughter.

Tyler McKinley begins to formulate plans to publicise the contents of this letter in Britain or the United States, hoping to raise international outcry against the Nazis. Russell, though concerned, has other irons in the fire, and so for a while it seems this plot point will stay peripheral. It’s only when McKinley is himself murdered by the Gestapo that Russell is forced to take a hand. He’s unable to let the incriminating information die with McKinley and yet, in Germany in 1939, with the SS everywhere and Stalin’s Red Menace looming on Germany’s eastern borders, it is not as simple as popping the letter in an envelope addressed to Washington or London.

Throughout the novel, Russell’s conflict involves one key question – should he, or should he not, get involved? Every act of sedition he commits, whether it is taking valuables out of Germany for a Jewish family, pulling strings at the British Embassy to get visas for a Jewish woman and her daughters, or impersonating Tyler McKinley to bring Nazi atrocities to light, requires an effort of will and a conscious decision to take a risk. Sometimes the risk he takes is a small one, and other times the choice he makes puts his own life in real danger.

Leaving the novel aside for a moment, I’d like to share what I found out after reading Zoo Station, when I picked up some textbooks of mine to read up on the eugenics movement and the euthanasia program. The letter mentioned in the novel was not a fabrication: in October 1939 Hitler issued a secret order, backdated to 1 September 1939, in which he directed that the allegedly incurable mentally ill were to be “granted a merciful death”. The Ministry of Justice then sent a letter to asylum directors mandating the killing of ‘incurables’, and directing them as to how to inform parents of their children’s deaths.

A group of a few dozen initiates, mainly doctors, carried out these orders.

They murdered 70,000 people by lethal injection and, later, by gassing – only children, at first, then adults – between October 1939 and August 1941.

At one 100-bed hospital, Grafeneck, during the period from May 12 until June 28, 1940 – 47 days – a total of 2,019 people died. This averages out to 43 deaths daily. Almost half the population of a 100-bed institution murdered, every day. As patients were killed, others were bussed in from institutions all over the Reich, to take their places.

It was the detail of this policy – the selection of the victims, their transportation, incarceration and extermination, which provided the model for the subsequent campaigns against other ‘undesirable’ elements – Gypsies, homosexuals, political dissidents, Jews.

70,000 people – double the population of my hometown.

The war ended in 1945, but the killings ended in August 1941. Why?

All along, the Nazi euthanasia conspirators were aware that they needed the utmost secrecy to avoid the German people getting wind of their plans. It was impossible to keep it entirely a secret, though, because of the sheer size of the operation. Before long, citizens realised the truth about what was happening in these institutions across Germany – some watched busload after busload of disabled people arriving, though no one ever left; some received death certificates for their loved ones on the same day as the death had supposedly occurred. In one town which contained a hospital-turned-killing-centre, ashes containing human hair rained down on the city.

Slowly – too slowly – a groundswell of protest rose throughout the Reich. Some doctors managed to get away with rediagnosing their patients, making them ineligible for euthanasia and saving their lives. Some families were able to manipulate, deceive, or bully their doctors into releasing their family members to their own care, or transferring them to a private hospital where the murderous arm of “Action T4” did not reach.

In July 1940 a Lutheran Bishop wrote a memorandum detailing how the Protestant churches had become aware of the systematic killings, and urging that the measures be immediately halted. “The moral basis of the entire nation”, he stated, “will otherwise be extremely shaken.”

In 1941 the Catholic church broke its silence – first amongst the clergy itself, and then publicly to its parishioners. Denouncing the Gestapo in a public church, during the heat of World War II, could not have been an easy thing to do. But the Bishop of M√ľnster, Clemens von Galen preached, “It is a terrible, unjust and catastrophic thing when man opposes his will to the will of God. We are talking about men and women, our compatriots, our brothers and sisters. Poor unproductive people if you wish, but does this mean that they have lost their right to live?” Parts of this sermon were reproduced by the Royal Air Force and dropped, by British pilots, among German troops.

By August 1941 Hitler was no longer able to ignore the waves of protest. He was jeered by an angry crowd during a speech – the one time an audience opposed him in all his 12 years at the head of the Reich.

On August 24, 1941 Hitler ordered that the Action T4 program be stopped – and commanded that there was to be no further provocation of Germany’s churches for the duration of the war.

Margaret Mead, anthropologist and feminist, said “Never doubt that a small group of citizens can change the world. Indeed, it is the only thing that ever has.” Our days, like John Russell’s of Zoo Station, are made up of hundreds of little decisions, and a few big ones. Smiling at someone on the bus – little decision, or big one? Holding the elevator – little decision or big? Making eye contact – little or big?

Looking away from suffering – little or big?

Keeping quiet when wrong is being done – little or big?

1,347 days elapsed between the cancellation of Action T4 and Germany’s unconditional surrender to the Allied Forces. Had the Nazis carried on their program at the pace set, the Grafeneck facility alone – only one of at least six – would have supervised the deaths of an additional 57,921 disabled people.

If no one had dared. If people had looked away. If everyone had kept quiet.

Speak out – because your voices can change the world.

Never doubt it.

Bibliography

Berghahn, Volker. Imperial Germany 1971-1914 Berghahn Books 1994
Craig, Gordon. Germany 1866-1945 Oxford University Press 1980
Peukert, Detlev. Inside Nazi Germany Penguin Books 1987
Ramm, Agatha. Europe in the Twentieth Century 1905-1970 Longman Group 1984
Sax, Benjamin and Kuntz, Dieter. Inside Hitler’s Germany D.C. Heath & Co 1992

Sunday, May 10, 2009

Reminder: Today's Post Follows

Reminder: Book Club tomorrow. Either publish your thoughts on the book in the comment section or write a review on your blog and send us the url so we can all go read. I have a surprise tomorrow ...

Today's post follows.

Mother's Day

Today's post might seem like outrageous sacrilege but I mean it most respectfully. I don't know if anyone else tires of the commercials on television about 'Mother's Day'. They present the world as if the moment of birth transfroms a woman into a saint. That from that moment forth she lives her entire life in a state of unending love, compassion and understanding. That every time she moves soft music plays, every time she speaks flowers blossom, every time her heart beats angels take flight. They play these commercials unceasingly for several weeks building up to the big day. They play them with a seriousness that forbids mocking.

So, how is it to be explained the 'Jacob, get back here, do you want me to smack you?' and the 'Heather stop that right now or Mommy's going to take you home right now.' or even the, 'I've had enough young man, do you hear me ENOUGH!!' That you hear constantly when out shopping. I spent the day out yesterday and never once caught the scent of flowers blooming while a mother's voice was booming. Oh, don't get me wrong, I don't think any of these women were bad mothers, not at all. I think they are real mothers, living in the real world, discovering (and coping with) the fact that they've given birth to demon spawn.

My Grandfather was a big man, a farmer, who kind of frightened everyone. I don't remember him ever laughing, his anger was legendary and his approval seldom won. He was impossible to get to know. Yet one summer when we were at the farm he called me over to walk with him to the barn. The other kids were there but it was me he called. I've not always been this fat, but I've always been more than merely plump. I ran after him in an ungainly fashion. He shook his head in disapproval but he waited for me.

We walked together in silence, as we got to the barn he said, 'I want to show you something.' He slid the barn door open and we stepped onto the concrete. The barn always smelled of fresh straw and well cared for animals. In one of the unused stall, up in the corner lay one of the farm hounds. She was suckling her own puppies and two small kittens. I watched transfixed. I glanced up and saw a look of real gentleness and outright approval on my Grandfather's face.

The dog looked up at us, at first warily and then defiantly. Then realizing we were there just to watch not to interfere, she went back to nuzzling her brood of puppies and kittens. She lovingly washed them and warmly snuggled them. We stayed for a brief while. I was enjoying the sight but also enjoying this moment with my Grandfather. I never understood, and still don't, why I was chosen to stand with him that day. His hand, he had a huge hand, reached aross me and rested on my shoulder. I felt completely embraced.

On our way back to the barn he said in the Danish accent he never lost, 'Loving when you don't have to, that's a miracle.' I ran back to the other kids who were still in shock that Grandpa had wanted the company of one of us and in disbelief that he had chosen me. They all wanted to know what that was about, I told them that I didn't know. I wasn't being coy, I didn't know.

Over the course of my lifetime I have seen many people love when they didn't have to, love when they weren't expected to, love when it wasn't advisable. Some of them were mothers, some of them were not. Some of them were women, some of them were not. Some of them were adult, some of them were not. But all of them were miraculous.

I choose, today, to celebrate miraculous love. I have experienced it often in my life. I have recieved it. I hope I have given it. It is in the moment of miraculous love that we understand the true nature of our worth.

So here's to the dog in the barn! Here's to loving dangerously. Here's to the moments of miraculous mothering.

Saturday, May 09, 2009

Yesterday

I was asleep seconds after getting into the car. That kind of exhaustion comes only as a result of extreme stress. Joe said I was snoring before we left the parking lot. I have mentioned before that, at my core, I'm extremely insecure. That I lecture at all is surprising, it comes about soley due to the combination of grit and grace. It's trite to say it but the only reason I put myself up in front of others is because I believe strongly in what I want to say.

After all these years I've never really made peace with what I do. You know I lectured for 3 years before I ever let Joe come and hear me speak. It was 7 years before anyone in my family ever was invited to attend. I figure failure in front of strangers was something I could live with, failure in front of familiars - now that's a different story. And you know over the years I've had some people not like my lecture style, but I can recall only one disasterous training were I embarrassed myself. And when I think back over my career, I remember that training more than the standing ovations, the cheers, the letters of thank you. (One of Fat's regular readers was at that disasterous training ... do you remember?)

So, when Manuela asked me to do a presentation at Vita's staff retreat, like I did last year, I tensed up. I agreed, and I agreed to talk about something that I hadn't talked about before. Now there is a double whammy. When I came to Vita I thought I'd be there only for a couple of years while we worked on the 'home safe' project whereby we were consciously working on developing protocols, procedures and plans that would keep people safe in service. It's turned out to be a bigger project than we imagined. And, truthfully, I found I like having a home agency, a home office and being part of a larger team.

Last years lecture was bad enough, but this year - it was like getting up in front of a room full of family. That should be reassuring, but as all of you know, it isn't. So I had to wait to talk until after lunch. When I was finally up on stage and finally prepared to give my talk, I simply did. As as happens, once in, I enjoyed myself and the experience.

What was different this time was that I felt really part of something much bigger. I felt part of a huge team, I felt the team spirit and I felt that there was there in the room a quiet pride in all of us for what we do, for what we want to to, and a real determination to continue the journey.

For a moment it seemed like there was a wafting back and forth of support, from me to them, from them to me. It felt good.

To be home safe.

Thursday, May 07, 2009

Phone's For You ...

It gave us the giggles.

I said, 'No one else would get the humour in this.'

Joe said, 'Um, are you forgetting you have a blog? They'd all pretty much get it.'

So, let's see.

We switched pharmacies when we moved to the city. The new pharmacy has a plan whereby when one of your medications is near time for refill, a computer calls you. The phone rings and after you say hello, it say's 'Hello, this is Pharmaplus calling, our records indicate that a member of this household has a prescription that is ready for refill ...' Then it walks you through a security question and then gives you options for ordering the medications.

When we signed up we forgot that we are both men over 50 and kept alive by the miracle of chemistry. Joe is on a whack of medications, I'm on a double wack of meds. That's a lot of perscriptions.

That's a lot of phone calls.

Some days the only personal phone calls we get are from the soft voice of PharmaPlus. Joe is convinced that she is hot for him. I know ... it's me. I get double the calls after all. On our way home from Florida, we got 5 calls. 5 calls. How desperate is that? We are putting off coming out to her, we figure it will break her, um, disc.

After the third call, we got a fourth, I answered saying 'Come on just admit you want me ...' It wasn't the pharamcy - a voice said, 'Well, yes, we do want you to come and give a lecture.' Luckily it's someone I work with a fair bit. She recognized my voice and played along. I explained about the pharmacy calling and she claimed jealousy - apparently her drug store never calls, never writes and certainly doesn't sent flowers.

Well, our pharmacy makes us feel special. Over and over again.

I figure others feel the same. We went in to pick up meds today and were in line between two elderly women, one said to the other, 'Some days the only way I know my phone works is because the pharmacy calls.' The other says, I wish they'd use a male voice, I could use the thrill.'

Sorry, gotta finish up the phone is ringing ...

Wednesday, May 06, 2009

MINE!



We were on the boat ride over to the Magic Kingdom when Ruby spotted a girl of about 8 wearing a Cinderella gown and necklace. The necklace had a cameo portrait of Cindy and acted like a magnet pulling Ruby to itself. Her little finger pointed at the picture as she said to the girl, in a hushed voice, 'Is that you?' The girl, delighted at the attention, said, 'Yes.' Ruby took a step away from her and looked closely. You could see disbelief followed quickly by disappointment etch themselves on her face. She knew she'd been lied to, she reached out to her mom to be held. It was a tough moment to watch.

Certainly there are things we need to learn as we grow. Things that keep us safe. Beyond not running with sissors and looking both ways before crossing a street, learning that others lie, others trick and others manipulate - are also important lessons. Sad ones, true, but did one of these lessons have to happen on the boat over to Disney?

Ruby also seemed to begin to notice my differences more on this trip. Up until now, I've just been Dave. Dave is in a chair. Dave is really fat. Dave is simply Dave. But now Ruby was recognizing that many, most, other people are not like me. Most other people walk. Most other people are thinner. Most other people are different. Dave is different. She'd point out other people in wheelchairs to me. A couple of times she saw other big people and she'd smile and point at them too. It was like she wanted me to know somehow, that I was not alone that there were others like me out there too.

Then, we were at the pool. I was sitting in my wheelchair and Ruby had come back from swimming. A family had taken a table not far from us and they had three children, one a child a couple years older than Ruby. Ruby is very social and likes to be around and play with other children so she cautiously made her way over to say 'hi'. It was only when I felt that I had to pay close attention to them that I heard that they were making fun of me, my weight, my wheelchair, typical stupid stuff.

It registered all over Ruby's face that they were being mean to me. She fought tears as her face contorted getting ready to cry. Once over the urge she pointed back at me, 'Dave ...' there was a long pause as she tried to find a word to say. Her vocabulary doesn't give her the language she needed to defend me. I waited. This was her moment, not mine. 'Dave ...' she said again. They'd stopped talking because they'd noticed her presence. Knew they'd been heard by this little girl.

'Dave ... MINE!' she said, turned round and ran back to us. She threw her arms up to me and I picked her up. She gave me a hug. I thanked her for standing up for me.

'Mine.' People should not tease and mock me because I belong to someone. People should not hurt each other because we all belong to others. We are knit into lives, we are part of a larger fabric of belonging. 'Mine.' A word of possession, a word of inclusion, a word of affection. A word known by two year olds everywhere. So all over two know the morality of cruelty.

I do not need the protection of a two and a half year old girl. No. But I'm proud to have it.

Tuesday, May 05, 2009

3 Scenes 1 Realization

We were having lunch at the Starlight Cafe at Disney. I held the table for a short while while Mike was off with Ruby to meet Belle and Joe and Marissa had gone in to get burgers. The sun was out but I was under the protection of an umbrella. I had moved from the scooter to the chair and was just people watching. A young man with Down Syndrome came from the crowd to take a table and have his lunch. I scanned the mob to find a caregiver and saw none, as everyone converged on our table I kept my eye out for someone, no one came.

Driving home, we hit I 90 at Erie and turned East. I was simply looking out the window trying to will the miles by. I liked being in the van as I sat higher and could see much more than in our VW Bug. As we went over a bridge, I looked down and saw a guy, who looked about my age, sitting in a wheelchair near the edge of an embankment along a river. His van was sitting near him like a faithful servant. There was no one with him. He was just sitting there. No beer in his hand. No fishing tackle to be seen. No book. It was just him, the river and the day.

As I remember the trip, I'm hoping to write my favourite moment from the trip tomorrow if I can muster up the talent to tell it right, I remember sitting by the pool, alone. Of course I loved the company of family and all but that time just by myself was so restorative. Sitting in my wheelchair, my scooter tucked up beside me, looking out over the water. Book sat unread on the table. For awhile it was just me. Alone.

I need people in my life. I need people because I'm a people needer. Some people aren't, I am. I can't imagine my life without Joe. I can't imagine my life without others in it. But, here's the rub, I also need people because I have a disability. Joe does things for me that I can't do for myself. He enables me in the best way possible. Some of Joe's duties were taken over by others over these few days. When we were out sans scooter Mike pushed me ... Ruby tried and failed in such a comic way that we all laughed loudly. Marissa and Ruby help get and fetch as needed. As someone who was once proudly independant, this kind of people needing can sometimes rub self esteem a bit raw.

Alone.

Sans help.

Sans helpers.

Sans assistance.

I understood the peace on the face of that guy with Down Syndrome who lunched alone. I am romantically tinging my interpretation of the man by the side of the river. I get what they are doing. And I've decided, I'm going to do it a little more often. Because, in that quiet time, I found something I thought I'd lost. Turns out it was me.

Monday, May 04, 2009

Lucky

"That will be three adults, a child and a chair?" She said looking over me as if I hadn't been the one to speak, hadn't been the one to give information, hadn't been the one right in front of her. She looked at Joe who, ignoring the slight, simply nodded. We took our seats in the restaurant and casually looked at the menus. I could see the others looking distinctly uncomfortable - like something was slightly amiss.

"What?" I said.

"Didn't the woman at the desk bother you with the 'chair' remark and by refusing to talk to you?" I was asked.

"I am on holidays for a few more days," I said, "I have spent the last few days resting, relaxing and distracting myself into a Zen state of calm. I'm not going to let a little bit of crassness be the start of ratcheting up for the real world yet. I'm going to get my revenge by ordering and not saying 'please'."

Joe gasped and said, "Oh, no, not that!"

And that's all that happened ... just know that there is a waitress who had a very lucky day today ...

Sunday, May 03, 2009

Scandalous Goings On ...

I'm not sure if she is a devotee or simply a voyeur. All I know is that she somehow managed to stay in our room after everyone left. I didn't notice her, a tribute to her stalking skills. Over the course of the evening I woke up feeling like I was being watched, being stalked, being desired. I've never had the experience of having a 'devotee' although I hear women with disabilities talking about them from time to time. For those out of the know 'devotee' is the term used to describe people attracted to people with disabilities ... many more interested in the disability than the person. If you can make a shoe a fetishtic object, then why not disability, or any other trait.

Anyways, tutorial over, I haven't had the experience of being sought out and lusted over because of my disability. I haven't felt the deep burning passion that devotees have towards crippled limbs and twisted smiles. No, not I. Then I realized that I've only read about such denizens of the edges of sexual perversion on blogs by women with disabilities. Do men with disabilities have such things ... well, I guess so because ... I have.

As I was saying, I felt that I was being watched. I tossed the idea aside. Surely there was just Joe and I in the room. But I was wrong. I woke to the stare of a woman in a beautiful blue gown. There she was perched on my bedside table. Wait till the tabloids get ahold of this - Cinderella was there with her luscious lips all painted red and she was staring - unblinking really - at me. I rose and tried to cover myself from her red hot glare. I knew immediately that she had escaped from Ruby's pack of princesses that she'd been carrying around. She spent the evening not looking at Prince Chariming's tight ass and meager basket, no she was with me - who looks like I'm half way into turning myself back into a pumpkin.

So me and Cindy spent the night together in Orlando Florida. I can't believe that, of all the stories I'd have to tell, I'd end up with a princess in my bedroom. Joe is dealing with his jealousy nicely.

Hey wait a minute. If Cindy was with me, where did the Prince spend his night, and why does Joe's breath smell of plastic?

Saturday, May 02, 2009

Roll Model

Here at the resort we've claimed a table down by the pool. There is space to park the scooter and set up my regular chair under the umbrella. It's far enough away from the pool to give a few second safety net to spot Ruby if she makes a dash for the water yet close enough to see everything that goes on. Joe and I spent the afternoon there while the others were all off at some Disney Extravaganza Park, one day at the Mouse House was quite enough for us.

I had brought my book down and was really enjoying just sitting and reading. After an hour or so, I paused to look around. Another couple had taken a spot a little closer to the pool. She was plump but looked like she could easily hike up Mount 'Because It's There' if she so chose. He was not so able. He walked in tiny baby steps, teetering dangerously from time to time, he made his way around on sheer determination.

As he teetered his way by our table he stopped and took a really good look at my scooter. It is obviously a rental because the company name 'Walker' (which I find endlessly funny) and phone number is painted all over the base. He was obvously tempted but then I saw him set his jaw and shake is head, and on he went. As we left, I felt his eyes on me as I mounted my steed and took off.

We picked the others up from the park and then headed out for a feast of Chinese food. We arrived back at the hotel with more stuff. It seems that every time we come back we are carrying bags of 'stuff' up to the room. Joe had to go in and get change to tip the car jockey so I waited with Marissa and Ruby and Mike took a first load upstairs. A couple of seconds later out whipped the guy from the pool. He was riding on a 'Walker'.

I nodded and he nodded back. 'It's great isn't it?' I asked. He smiled, hugely, and said, 'I couldn't imagine,' and was off.

I don't know if he meant that he couldn't imagine the freedom it would give him, or if he couldn't imagine himself on one, or maybe he meant both. Whatever, I'm glad that he found the courage in himself to take assistance and get freedom.

Friday, May 01, 2009

Pity



We were waiting, in the hot sun, for Mike, Marissa and Ruby to nagivate the incredibly long line that led up to the Dumbo flying ride. Joe, who's face always has a slightly reddish hue, began to radiate the heat we were sitting in. I told him that night that I felt like I was going to bed with Mister Tomato Head. Anyways the reason we were sitting there was that we had the family camera and there were pictures to be taken of Ruby's first flight!

Joe saw that they were next up so he went to get into a position to take a photograph. I watched the current ride and saw a small boy, sitting cuddled up with his mom. He had his hand outstreached feeling the wind as it raced by, a delighted yelp left his lips. I swear I saw his mother cry. It was a lovely moment amongst many. I noticed him get off and only then saw that he was blind being expertly assisted by his mother. I understood now the sudden source of her tears and felt them myself.

They passed by me on the ramp down from the ride and I smiled at him. It didn't matter that he couldn't see me, I was convinced that a boy who could read letters on the breath of wind with his fingers would feel the warmth of my smile as he passed by. Then I noticed Ruby running along picking out the elephant that would take her to the skies, I saw Joe readying the camera. He gave me the, 'How in hell will I get this shot look.'

They flew by and Ruby, just like that little boy had her hand out, she too squealed delightedly as Dumbo soared to impossible heights. I wondered, wistfully, if she one day would bring her little girl here. If she would wonder at how small the ride had become over the years. Because now, you could see clouds in her eyes. She got off and took her Dad's hand as they made their way to the ramp.

One of the parents, with a small child, was loudly complaining to her friend about how stupid it was to have had to wait for a blind kid to ride on the rides. 'The lines are long enough,' she said loudly figuring all would agree, 'Without wasting them on kids who can't enjoy them.' She was surrounded by a sea of hard faces. Everyone who heard her was glaring at her ... she, to her credit, noticed and toned down a little.

I could write here about 'who was blind' but I hate that kind of statement as it still casts blindness as a negative state. I wonder though, not at the smallness of people's hearts but, rather, at the smallness of their imagination. It's a failure of imagination to not understand how a blind child could feel flight and experience joy. It's possible that that hand, outstreached, was touching the very face of wind. How cool is that? How incredibly cool.

I'm guessing that that woman colours all of life with simply one crayon - and that is something that I truly pity.