Thursday, July 31, 2008

Funny Ha Ha ... OH NO

The post that follows this one was a mistake. A big honking mistake. Yesterday the stat counter for Chewing the Fat was going nuts. I had 364 visitors by 9AM and I went to see where they were all coming from. Turns out the post I wrote about 'My Student's Penis' was picked up by reddit and all sorts of people were popping over to read the post. I got a kick out of the fact that visitors, not knowing this was a disability blog came for penis and left with a love story between two people with disabilities. Alright!

But on that same reddit list was a post that was entitled:

If Intelligent Design Is Genuine How Can Creationists Explain Disorders Such As Autism and Mental Retardation?

I looked into it and there was all this chatter going on about how the existance of Autism and Intellectual Disability proved that there could be no intelligent design, no presence of God. They were all being so very sophisticated and so very witty and urbane in their attack on the anti-evolutionists.

Personally I don't understand why anyone fears the concept of evolution, I think it has nothing to do with faith ... Good God ... I've evolved over time. But what bothered me was the incredible arrogence in the implication that either autism or intellectual disability must be the result of some incredible cosmic burp ... that they could have no role in an intellegent design, they they had no value to add to the human condition. As I read the comments I became deeply pissed off.

So, I decided to blog on this issue. I didn't have time, so I clipped the title and pasted it into my blog post window and then saved it for the future. I set the date wrong as I was rushing and when I came on this morning I found that just the title had published and there were already responses.

OH NO ... I hope those readers come back ... I would never have said that. I believe that the best of humanity is the breadth of humanity. I believe that people with disabilities have a place and a role. I believe that we are each of us necessary and we are each of us needed.

But now all I'm doing is rushing to get something else up to explain that line on the next post. Please forgive my sloppy work, I'll be more careful in the future.

Funny Ha Ha

If Intelligent Design Is Genuine How Can Creationists Explain Disorders Such As Autism and Mental Retardation?

Wednesday, July 30, 2008

Back and Bleary

My blog is late. My eyes are bleary. I'm weak with fatigue. I finished lecturing yesterday at just after 3 pm, then we got in the car and drove home. All the way from New York City to Toronto. Everything was going well and then we hit the outskirts of TO and we hit construction. We crawled for over an hour along the Queen Elizabeth Way, exhausted from the drive, sitting in a hot humid summer night only a few clicks from home.

But we made it.

I'm up and in a few minutes I'll call Joe and then we'll get ourselves ready and I'll get into work. I'm not scheduled in today but I'm excited about stuff that happened in New York and I need to get in to share some of that excitement. You see while there I had lunch on both days with Perry Samowitz and Bobra Fyne ... the two in the picture ... of YAI. They are both very vital people and we talked a lot about opportunities to collaborate across agencies and across nations. Perry has a very big view of the world and he believes that there is a way that the web can be used to create a repository of programmes, policies, protocols and procedures from around the world, a place where someone can go and research what's out there, what's worked and then simply download and use - we all say 'why reinvent the wheel' - that's fine, but where do you find the wheel?

So I trained during the day and got inspired at lunch. Bobra wants to come up to Vita to talk to us about our use of their consent tool and get our help to create something new out of that work, a unique teaching tool about consent. They see agencies working in collaboration as a fundamental in an ethical way of doing business. It's about sharing not competition. It's about the work not the spotlight. Very cool.

This morning I have much to talk to the boss about, much to mull over. This is one of the reasons I like to travel and train others. It's about the training I get myself.

I get paid for this.

Tuesday, July 29, 2008

Manhattan in Manhattan

This picture is very important to me. Beyond it being a picture of Joe, it is a picture of so much more. Joe and I have many traditions that we have crafted together over the years. On our very first trip to New York when we were still pups, I took him to a fancy bar and bought him a Manhattan. Drinking a Manhattan while being in Manhattan seemed like just the right thing to do. I haven't ever liked hard liquor but Joe has always enjoyed the occastional tot of the hard stuff.

Our last few trips to New York have been without that tradition. After my last big illness I was just too tired to do much of anything after we got back to the hotel. But something wonderful has been happening to me over the last few months. I've been really healthy, free of any real illness for coming on to three years now. About two months ago I began noticing a change in my health. It was subtle at first, I wasn't sure enough to even talk about it. But now it isn't subtle.

My strength is coming back. Big time, coming back. I notice it in my lecturing, where I would hold back on a story to conserve energy for the day, now I can go at it gangbusters and still be breathing at the end of the day, still have energy for more. Now here in New York, I was tired after the day, but on the way back to the hotel, I found myself resting in the cool air conditioning of the car. We turned off of Broadway to go to the hotel parking area and I noticed a bar right on the corner.

We got out of the car and I asked Joe to take the briefcase up to the room and then meet me downstairs. He was shocked but agreed. I waited on the sidewalk and watched the world, literally, go by. When he came down we meandered by some of the stalls on the street and then I turned into the bar. Joe was again shocked but agreed. I rolled up to the bar and ordered him a Manhattan.

I had a glass of water, not just a glass of water, a $8.34 glass of New York Water. I watched him drink his Manhattan and I remembered the boy he was when we first came here together. I remembered the start of the tradition. I was glad to bring back something that meant something to the two of us. I was glad it was back.

And I thank God that I too, am coming back.

Monday, July 28, 2008

If I can make it there ...

Truth to tell, the move was quite demoralizing for me. I found myself feeling useless and in the way. No one made me feel this way ... the worst punishment comes from within. I had to sit in my wheelchair and watch others pick up my stuff and move it. They were all quick and efficient and so very very able bodied.

I didn't know what to do with myself. I didn't know where to hide. They were going in each and every room hauling out boxes and furnature and bits of this and lots of that. So I just sat and grinned and made a comment or two - keeping spirits light. While they fought to get our stuff to fit in the truck, I fought depression from taking over. I felt well and truly disabled.

And I didn't like it.

The self pity hangover lasted for more days than you would imagine. Even though on Monday I was back at work, back doing things of value, doing things independantly. The fact that I hadn't moved a single thing, carted a single box, grew in my mind. It was like everything I could do was hidden by the shadow of the things that I can't do. Like move boxes and lift furnature.

I was feeling a wee bet better by the weekend. Time does heal. I had managed to push most of that feeling of inadequacy (when I say inadequacy, I mean the dibilitating sense of not being equal to your own life) to the back of my mind. Things changed this morning. Big time.

I got up early because I wanted to get organized for the day. And besides, I get up early. We need to arrange with the hotel for our car to be brought round they need 45 minutes to be able to get it for you. You see I'm lecturing today in New York City.

Yeah, Baby.

New York City.

Cripple takes bite of Big Apple!

As we drove in yesterday and inched our way across the island towards the hotel, our car being constantly swarmed by tourists, I realized ... Who really, really, gives a shit about boxes. I'm lecturing in New York! Wheelchair and all.

Take that self esteem.

Sunday, July 27, 2008

Tess of the UberVille

You know what's kind of weird about living here in Toronto in this particular apartment building. Everyone in the building is very cool about the wheelchair. I get looked in the eye when I'm greeted, people speak to both Joe and I and most importantly no one ever grabs the chair in their rush to get by or their impulse to help. No one. Ever. I expected something different, frankly, worse.

Yesterday after coming home from teaching up in Barrie, Joe dropped me off at the front of the building while he went and moved a few more boxes from the car up into the apartment. I sat beside the bench where others come out to sit and wait for taxis or to have a quick smoke. I chatted with people there and those coming in and out of the building. I was remarking to myself how nice everyone seems to be and how unaffected they were by having a new tenant with a disability. Cool.

Finally it was just myself and the Superintendant and he asked me how I was finding the building accessibilty wise. I told him that I was managing well and that I was impressed with people's graciousness regarding the chair. He said, "You've got Tess to thank for that."

I pictured Tess, who lives across the hallway from us, and in my mind I saw a sweet mild mannered elderly woman with a disability. She uses a walker to get down to the garbage shoot but a wheelchair to get around the area. On our major move in day she openned her door and welcomed us as neighbours. She reminded me of the type of woman who would bake cookies just to fill the air with scent. We plan on having her over for tea when we are finally settled. Understand then I was a bit surprised that the Super was crediting this little old woman with humanizing the building for me.

It took no encouragement at all to get him to continue talking. He explained that Tess had had several loud battles with residents regarding their actions towards her or her chair. People, he said, would grab her chair only once. She would tear a strip off them. She does things on her own and she asks when she needs help. She doesn't want to be seen as a helpless old woman and 'Bless God' anyone who tries that stuff on her.

Tess.

That old lady with white hair and blue walker. That little tiny woman who greeted us in fluffy slippers. She's a disability activist.

Who knew?

But I'll tell you what I learned.

It makes a difference what I do every day, what I stick up for, what respect I demand. I'm changing the world. One person at a time. One interaction at a time. It's what Tess did. And it mattered.

It's what I can do.

What you can do.

And it matters.

Saturday, July 26, 2008

My Student's Penis



I saw my student's penis and got excited. But I think I need to back way up to tell this story properly. Even so, I'm guessing I've caught your attention. But all is probably not as it may seem.

Years and years ago I was doing a series of sex education classes with about 40 people with disabilities. I met a couple there, she had Down Syndrome, he had cerebral palsy. They were, literally, hopelessly in love. So much was against them. Unsupportive parents, unaccepting staff. The only reason that they were 'allowed' to call themselves boyfriend and girlfriend was that everyone thought it was cute. Childish. Comical.

But there was nothing childish or comical about their affection for each other. Whatever they were outside, they were man and woman inside. I began sitting with them at the breaks in the class, they started staying a little bit after class. When I talked to them about the future, their joyousness died as if it had been smothered by the opinion of others. They could see no way clear to a life of love, to a life of marriage. They had given up even trying talking to people about their wishes and dreams.

"Let me tell you a story ..." I began. Then for ten to fifteen minutes every class, I told them a story about James and Janice (I can't beleive how clearly I remember this) a couple, surprise surprise, like them. Only he had Down Syndrome, she had cerebral palsy. This couple had to stand up to parents and staff, this couple had to insist on their rights. This couple had to demonstrate that they were adults. This couple had to love each other so much and so well that people really noticed that they were sincere, they were committed and they were unstoppable. They listened to my story about the two J's and asked questions.

Slowly they began to realize that they could do the things that James and Janet did. They could still speak for themselves. They could stand up for what they wanted. They could dream again about living and loving each other.

Each week I prepared for the class and I made note about the ongoing story of the two J's. The story gave them hope, the story gave them ideas, the story gave them a renewed sense of their love for each other. The story worked. Only a couple years later, they were married.

Now it must be clear that those two years saw a change in staffing, a change in the agency attitude about relationship, but it cannot be denied that there had also been a change in the couple's attitude towards themselves.

At that point, years ago, I began to imagine a three comic book series about James and Janet, one with Down Syndrome and one with Cerebral Palsy. Whenever I met someone who could draw, I talked to them about it. The idea scared off every one of them, some because of the content, some because there was not much in the way of money to be made, most because of the time it would take.

So you can imagine my reaction when I saw my student's penis.

During the last class of the Sexuality Summer School up in Barrie, a student, Andrew Bolton, drew a caricature of a penis - that lovely guy at the top of the blog with the glasses and cigar. One of the guys in his group grabbed it from him and showed it to me. I asked him if I could keep it, he looked at me like he thought the request was a bit weird but nodded agreement. "When the class is over can I talk to you about your penis?" Again, hesitantly, he nodded.

Later I told him about my dream of doing the three comic books for people with disabilities and he got the idea right away. We exchanged email addresses, I asked him if I could put this picture on my blog, and then we agreed to talk in a week or two.

On the way by my desk he said, "I never really thought that my penis would get me a job!"

I think he's going to be fun to work with.

Friday, July 25, 2008

Big Favour



I'm wondering if you could all do me a big favour. I'd like you to to forget Chewing the Fat today and instead jump over to my neice's blog. I am commissioning her to knit something girly up for baby Ruby on the occassion of her second birthday coming up in September. She is doing a poll of four or five possibilities. Could you help me decide? I've already looked at the offerings, Joe looked them over too and we liked them all. But many of you are parents and can probably tell at the drop of a hat what would be most practical. We're going on the 'darling' factor, we want opinions from the 'wearable' factor.

So help us out ... go to www.halfsoledboots.blogspot.com and there is a place to vote there. I don't know why I can't get this to go in link form, so you may have to copy and paste Shannon's address in order to get there.

See ya tomorrow with a regular blog.

Thursday, July 24, 2008

Jedi Dave


I think I lost the floor in about 2003. I remember the moment. I had dropped a sock to the floor and was reaching down to pick it up. Suddenly it seemed as if the sock were miles and miles away, just out of my grasp. My fingertips struggled to make contact. I knew at that moment that anything that hit the floor was now out of my world entirely.

Luckily I'm not that much of a dropsy kind of person so Joe didn't really notice for about a year that I was having him pick up things for me. "Hey, when was the last time you picked something off the floor?" "Um, maybe 16 or 17 months ago." "Oh." That ended the discussion of that.

But today we went shopping for something I need for the bathroom in the new apartment, a tub grip. It's something we realized we would need after only a couple of days in the new place. We knew they had them stocked at the Home Health Care store here in Barrie (where I'm back teaching for two days) and we headed straight there after work. While there I noticed the floor. I looked up and saw these brightly coloured 'reaches' and made my way over to them.

They had a lavender one as a sample and I found that I could pick up a set of keys from the floor. I spent a bit of time picking up a variety of things in the store and then said, "This is cool."

Joe said simply and quietly, "Very cool."

They had two colours, a drab green and a vibrant yellow. I picked as you can see the vibrant yellow one. Once I got it here to the hotel, I pulled it out and picked up pills from across the way, I kept throwing things onto the floor and retreiving them, I got yelled at when I picked up the hem of Joe's bathrobe and peeked. This thing is awesome. It's kind of like a light saber for crippled guys.

This is the kind of thing that I think the poor non-disabled need to discover. You can use it for so many things, drop something behing the fridge or beside the stove - well this is the ticket.

I am now waiting for the day that a light goes out.

Because it only takes one disabled guy to change a lightbulb.

No joke.

Wednesday, July 23, 2008

Current

I knew immediately that I didn't have enough talent. That my gift with words was not quite enough. I also knew, that despite this, I would try to tell you what I saw, and what it meant.

Joe and I are still experimenting with different ways to drive home. When we lived up in Baxter, there were really only one or two ways to get from Weston and Steeles to the 5th line. Now living at the center of the city, we can go a variety of different ways. Two days ago we decided to come down Yonge Street, all the way and then simply make a couple of turns after Bloor.

We both love to people watch and coming down Yonge there was a calvacade of different people. I almost always make comment about the borgs ... those people who have a telephone implanted in their ear. I think they are funny. So we point out different stores, different people, different sights to see. Then, not far north of Bloor, we see them. We both notice them at the same time. Then neither of us speaks for several minutes.

They are ancient. He is wearing a plaid shirt and beige pants and his body is cut in two with a brown belt. She is in a white dress with sprigs of pink flowers gaily scattered about. She too wears a belt, pulled tight across a tiny waist. She is folded, at the divide, and then again at the knee. She rides in a manual wheelchair that is pushed by a young stout woman. The two of them walk, expressionless, both staring straight ahead. They look both lost and purposeful at the same time.

It almost seems like they've vacated their bodies. That they'd lived too long here on earth and what was best of them had already left, and they had abandoned their bodies like old cars left to rust on the side of he road. It almost seemed thus, but not quite.

Years ago I watched fascinated as Mike installed the light over the pool table. Electricity scares me and I found myself slowly backing away while watching in fear as he nimbly used a knife to bare wire and then wrapped one wire around another. He explained to me in simple terms that the wires, now could pass the power from one to another.

And this is what I thought when I saw the two of them, walking north on Yonge Street together. Because, as vacant as their eyes looked, I knew I was decieved. They held hands, tightly, as they walked. There was passion in that connection. Like the ember of a fire that once burned hot still holds the heat, their hands held together changed everything about them. They became man and woman. Husband and wife. Love and lover. They were no longer old, they were no longer aided by another, her disability was not relevant. No matter what we all saw when we looked at them, they were still he and she and in love.

Their presence there on the west side of Yonge, was like a gift to each of us. I felt Joe take my hand and suddenly we were changed.

Tuesday, July 22, 2008

The Portrait of Dorian ... Wait, That's Dave



So, do you recognize this handsome guy? That would be me. What with all the packing and moving I picked up a file and this fell out. I immediately recognized it. During a lecture somewhere in Southern Ontario, a fellow with a disability came up to me and gave me this gift. He'd done a portrait of me giving the talk. The shirt is exactly the colour of a shirt that I used to consider my 'presentation' shirt (a fancy way of saying my 'lucky' shirt) and the suspenders ... well. I have worn suspenders for years, often during my talks my shirtneck rides down and my suspenders are exposed - he put them on the outside of my shirt where he thought they belonged. Everyone's a critic.

If you look closely you'll see that this drawing is done with ink pen! Thousands of small lines are put together to form the image. It's really quite a remarkable piece of work. The signature is hard to make out, the first name starts with E. and the last name I think is Flemming. I remember him quite well and the picture brings back a memory of the hall I was presenting in. You'll see a stage behind me, speakers too. He took in all the details.

I was so glad to find this and a bit angry at myself for being so overwhelmed with stuff that I forget important stuff. But luckily this picture remains, his gift is still to be savoured.

When I began in service to people with disabilities the idea of 'arts' was pooh poohed. People made fun of 'arts and crafts' and 'basketweaving'. Oh how arrogant we were as we put emphasis on everything we thought important and belittled everything they did well. If it was a skill, ignore it ... if it was a deficit, focus on it. Yep, a recipe for self esteem.

Thank heaven's Mr. Flemming had support that supported. His talent, respected. Because, now, I have this wonderful drawing.

By happy happenstance, does anyone out there know Mr. Flemming? I'd like to drop him a line.

Monday, July 21, 2008

A Midge Too Far

Really, her name was Midge. Really. I'd never met a Midge before. I've met a Madge. I've met a Mildred. But never a Midge. Really. Midge. Can you imagine?

Not only that, if I'd been asked to guess her name. I'd have guessed, Midge. Even though I've never seen one, she looked like one. Her hair looked like it was styled years ago and then held together by layer after layer of spray. The lacquered look. God's honest truth, there was a small blue bow in her hair. Guess the colour. Go ahead. I won't tell you, but just guess. Try to be exact.

Anyways, Midge and I, we two, bonded the other day at the mall. I had to get away from the noise and confusion of the move and went to the concourse nearby our apartment downtown. After pushing myself for a bit I was tired so I stopped by a cluster of chairs. Midge magically morphed into position beside me. She was all agog at my independance as a disabled person.

Midge talked as if she was practicing for the gossip olympics. Normally this kind of thing bothers me but she was distracting and funny. She had all sorts of tales about people with disabilities in her family. My gosh, Midge's family was practically busting out all over with cripples. They all live quite a good life to, thank you very much.

Then she focussed attention on me. When I told her that I had a job, I thought she practically orgasmed with delight. I tried out the title of my new position (got a wee promotion at work) and said I was Director of ... I couldn't get by 'Director' because Midge was on and on about how good it was for men with disabilities to feel like men. To earn a living. It does wonders for the masculine sense of self. Midge had read an article or two on 'What Men Need' I'm sure.

I promise you, I didn't see it coming.

You probably do.

But I didn't.

Then, she laid her hand on me knee at looked at me with ... with ... with l-o-n-g-i-n-g. She wanted me. She desired me. I saw her hand run up and down the rim of my wheelchair as she asked where I lived and did I live alone.

This never happens to me.

NEVER.

Well, once, in a bar in L.A. but that's another, seedier story.

So let's go back to ... This never happens to me.

I didn't know what to do. I can tell off a stranger in an instant, if necessary. But what kind of man breaks Midge's heart. All sorts of things ran through my head 'I'm gay' being the first of many. But Midge looked like the kind of girl would would want to make a cripple walk, turn a gay man straight. I simply said, "I am about to celebrate my 40th anniversary."

Midge backed right off. She might be many things, but she ain't no homewrecker. Not our Midge. She congratulated me for being the kind of man with principles.

She told me to tell the 'missus' how lucky she is.

And believe me, I did.

Sunday, July 20, 2008

Requiem for Self Esteem

Do you know?

And does knowing affect you?

I hope so.

We ate breakfast this morning at a small cafe not far from the house in Baxter. We got up and, what with all the boxes and stacks from moving, we decided to eat out. I settled into my spot at the table and shortly afterwards the table across from us was taken by a young mom and dad with a 5 or 6 year old boy with cerebral palsy. We did the 'nod' thing and went about our business of ordering breakfast and organizing the day.

About midway through the meal Mom asked us if they could borrow the katsup from our table. We handed it across and then fell into a conversation. We told them of the move, they told us that they had moved into the area only a few months ago so could commiserate with us regarding the hassle of it all. We never spoke disability. They introduced themselves and their son, we introduced ourselves. Their son spoke with a fairly heavy CP accent but it's an accent I know so had little difficulty with understanding him. This delighted him. His delight, delighted them. At one point Dad reached over and wiped his son's chin, and a look of both love and respect passed between them. I fogged up.

You can see it when parents love their kids.

Did you know that?

Does knowing affect you?

Later we stopped to get gas because the gas prices had fallen somewhat. I stayed in the car as Joe went into pay. A mom got out of a mini-van follwed by a daughter of, maybe 13. Mom was a pretty, perky fit woman. Daughter, was, um, not. She was very hefty, her clothes looked a size too small, her walk looked laboured. Mom called to her to hurry up. The look that passed from Mother to daughter was shame and anger and disrespect. Mom looked like she'd been cheated by the kid factory, got the wrong size.

You can see it when parents loathe their kids.

Did you know that?

Does knowing affect you?

I hope so.

I desperately, desperately hope so.

Saturday, July 19, 2008

A Letter In The Mail

Many years ago I was worried about a young friend. I didn't know how to help. I knew my help wasn't wanted. So, I wrote down a meditation and sent it in the mail. When I got home today there was a letter for me from my young friend. It was a lovely note saying that the meditation I had sent had been a big part of recovery, a big part of growing up. Inside the letter was a folded piece of paper that looked like it had travelled thousands of miles and been openned thousands of times. "I have this memorized, I think it's time you passed it on to someone else." I held the paper in my hand and openned it. I remembered the difficulties faced, the anger expressed, but I only barely remembered sending this.

It meant much to another, so I'll send it along to you. I can't recreate the layout, there were three columns each with a 'when you' kind of statement and then a one word response underneath the statement. Blogger won't let me lay it out that way, or maybe blogger would but I don't know how, so I've done my best.

Here follows, on the next post, my Meditations.

Meditations By A Tired Old Fat Guy Written For A Young Friend

when you are hungry - eat

when you are thirsty - drink

when you are full - stop

when you are tired - rest

when you are bored - do

when you are confused - figure

when you are hurt - heal

when you are sick - recover

when you are troubled - pray

when you are torn - mend

when you are pushed - pull

when you are pulled - push

when you are forced - resist

when you are giving up - dig

when you are hopeful - celebrate

when you are hopeless - recalculate

when you are sorrowful - grieve

when you are successful - give

when you are helped - thank

when you are angry - listen

when you are happy - laugh

when you are sad - cry

when you are scared - hug

when you are pressured - evaluate

when you are tricked - forgive

when you are tricked again - leave

when you have been burned - learn

when you are invited - accept

when you are demanded - reject

when you are controlled - fight

when you decide - act

when you promise - try

when you give your word - deliver

when you play - abandon

when you work - live

when you find friendship - test

when you find trust - risk

when you find yourself - explore

when you find home - sleep

when you find injustice - protest

when you are alone - be

when you are lonely - seek

when you feel ugly - pamper

when you face tomorrow - grit

when you pray - reveal

when you love - believe

when you wake - wonder

when you die - rejoice

Friday, July 18, 2008

Jiggitty Jig



Today is our last full day in this house. I'm not even saying 'our' house anymore. While I'm teaching summer school today, Joe and a couple others will be packing up the last of what we want to bring. Then tomorrow the truck arrives at 4:30 to be loaded. We leave when it leaves and head down to Toronto where we will await it's arrival just a little after 10 the following morning. By noon Sunday, we should be completely moved. Not unpacked. Not settled. Just moved.

We moved into this house a different couple. We had two dogs. I walked on two legs. We loved the quiet of the area and the sense of 'distance' from anywhere else in the world. But one small catastrophic illness later and everything kind of changed. We had purchased a house that was accessible, ramps and all ... on purpose. We wanted friends in wheelchairs to feel comfortable. Oddly, no one ever visited us who used a wheelchair. The ramp has been used only by me. A gift for others was a gift for me, that happens a lot doesn't it.

Then, of course, Fred and Eric died. They left such a hole in our lives. The house was still here, they were not. The house did not comfort us. Our memories did, the stories we told did. Home is created in a house, home is not the house. We realized that was we talked about our future here in this place.

But this all sound maudlin. There were so many other times here. Laughing. Company. Food. Loosing a drunken guest into the dark night and calling the police to search the neighbourhood. Serious get togethers to talk about plans and organize work projects. Counseling several individuals with disabilities who came to see our house, this office as a place of peace and comfort. And of course, Ruby started walking inn our kitchen. The place is chock a block with the times of our lives, such as we lived them here in Baxter.

I look around at our home and I see it for what it is. A lovely place. A good place for a family with children. But that's all it is. I don't feel a sense of loss, or even much a sense of regret. I have always liked where I lived but I've never found home in a place. I feel at home in the car with Joe driving while he's explaining, badly, something he heard on the radio. I feel at home when I'm deeply engrossed in something at my office. I feel at home when I sit quietly in my wheelchair under a shade tree and reading.

I am not leaving my home. I can't do that. "Home" is in my pocket, it travels with me. People often ask me how I can leave home for so long and do a 4 week lecture tour of the UK, or a 3 week jaunt through the States. I make noises about the stress of travel. All true. But, I've been at home shopping at Tesco's. I've been at home in a Residence Inn in Kansas City. I've been home sipping tea on an airplane. If I have my love and my passions with me, if I can call out and have Joe hear me, then I am home.

I'm taking boxes with me. Full of stuff. But home won't be found there. I'll have my things, but what I'll really have is a brand new slate, ready to record brand new entries. Because, after all, life is simply a series of blogs. Wouldn't ya say?

Here's to Yonge and Bloor!

Home again, Home again, Jiggity Jig.

Thursday, July 17, 2008

5 Minutes

If all goes well my first blog for www.5minutesforspecialneeds.com will appear sometime today. By, if all goes well, I mean if the fine folks over there are able to cope with me as a regular writer. I'm scheduled for every second Thursday but we'll see how long their patience holds out.

You see when they wrote and asked me, I liked the idea of doing a blog for them so I said sure. I still contribute on an occasional basis for OUCH! and this seemed like another way to make a contribution. But then I got an email from them and they wanted me to join a Yahoo Group and to send this here and review that ... AAARRRRGGGGHHHH!! I am so not able to do those things. I've never joined a 'Group' and I didn't understand all the stuff that was being requested of me.

I know that because you see me posting here, you think that I have a technical bent. Um. No. This really is a case of 'if I can do it, anyone can do it'. I'm computer literate in that I can write memos and send emails and print off something when I need to. Beyond that, it's a big shiny magic box. I have burned out so many people who have tried to help me learn to do new things. I got my picture up in the profile section because BP (Blog Princess) a friend of mine, managed to get it done for me. The pictures got up because Mike kept saying ... breathe, breathe, breath ... through his little tutorials.

So, when they wrote me and asked, "Did you get the email about the blog?" I do what men do. I pretended not to notice the request. I mean who wants to write and say, "Um, I didn't understand, I don't understand, please sail without me?" But then guilt got to me and I wrote and said, "Um, Group?" So someone there has agreed I can just send my blog to them and then they will post it. Ah ha, an arrangement I can commit to. Then I surprised them and wrote and asked to be notified a few days before each blog was due because I can't keep a schedule straight for the life of me. (Yes, Joe dusts me off and sets me before an audience right at the time I'm scheduled to lecture - the secret behind the magic.)

I imagine they thought ... this wasn't supposed to be 5 mintues for special needs for YOU! But, that's the way it goes. Poor Vaughn at OUCH gets an email from me pretty much every time I want to put a blog on there - I can never remember how to do it, can never find his email explaining it, and besides ... it's a disability blog, I'm disabled, he's there to help! Right?

So pop on over and see their site and the blog I wrote for my inaugural post. And thanks to the people there (and at OUCH) who let me contribute even though I take more time than most.

I have heard from them, it will go up today, not sure what time, but check later in the morning to see what you shall see.

Wednesday, July 16, 2008

History Quiz

Do you know where you were on September 18th of 1992? What!?! You don't? Well, I do. Arriving home today from work, I found several plaques sitting on my desk. I have received a number of awards over the course of my career and have had a 'wall of frame' for a fairly long time. I even have a lifetime acheivement award! I got it in my late 40's. That felt odd, wonderfully odd, but odd indeed. Anyways, with the move I got permission to hang these awards on my office walls.

But Joe uncovered a couple more today whilst packing. They weren't exactly awards, they were framed mementos from conferences that I've spoken at. One of them was given to me for a series of presentations I did in Puerto Rico in 1992. It immediately brought back wonderful memories. They had struggled and struggled to get the financing and the backing for this conference and they had contacted what they called their, 'dream speakers' ... I was honoured to be amongst that list.

They had me down for one presentation but then called and asked if I could fill in some spots in the programme because they just weren't able to fill them all. I took, not one, but two other spots and assured them that I was just thrilled to be making the trip and hopefully at the same time to be making a difference. (Don't mock me this tritism, it really is true for me.) So, when I arrived, in gratitude for my willingness to do extra work for the same pay, they had put me in a luxury room that the hotel had donated. It was an amazing experience that has made for an amazing set of memories.

From the beginning of my time there until I landed back home I felt welcome. I loved San Juan and I loved the incredible sense of purpose that they managed to create at the conference. As I looked at the plaque I could almost smell the September air. I immediately put it aside and decided to hang it on the wall of my office along with the other awards and mementos.

An hour later I came to write my blog (I have to be up early so I needed to write it tonight and schedule it for tomorrow) and I saw it sitting there. Actually saw it. If you can see detail in the picture, you will notice that there is a 10cent American stamp that has a picture of a little girl and says "Retarded Children Can Be Helped" and then typed underneath is "Mental Retardation Symposium September 18, 19, 20 SAN JUAN, PUERTO RICO 1992". Realize when you read this that 1992 is 16 years ago.

Now I'm in a quandary. I know the language on that plaque is of it's time. I know that it represents no ill intent on the part of the committee, no prejudice on the part of the people who gave it to me. In fact, quite the reverse. These were people who were working incredibly hard to improve the lot of those with disabilities. Even so, the picture and words might upset some of those who come into my office, people with disabilities, their families, the staff. But it also might not. Often I worry for nothing. (That's just me! I'm so different.)

So a take a History Quiz:

Should Dave hang this memento that means a lot to him on his office wall?

What say you all?

(I have tried and tried to fix the spacing in the second part of the post, but for some reason blogger is taking out the paragraph breaks. This makes for difficult reading, I'm sorry but I don't know how to fix it. If anyone else uses blogger and has found a solution for this problem could you please let me know.)

Tuesday, July 15, 2008

Nearly Two

It's amazing what you can learn from someone who is nearly two. Ruby came to visit with her dad, Mike, when he came to pick up the last of his stuff from our basement. She's of incredibly good temperment and has just the right amount of shyness, an initial hesitancy that children need to live safely in this world. After being here in the house for about half an hour, after watching to see that her dad was comfortable with us and after a little light went off in her memory (so she had seen us before) she began to include us in her interactions and involve us in her play.

What made it different this time was that she now really noticed the wheelchair in a way that she had not previously done. She had always known me as 'the guy in wheels' but this time it seemed that she understood 'the guy' and 'the wheels' as two distinct things. Something that adults can't often do, she now got. She decided that she loved pushing me in the wheelchair. We were shopping at the mall and she pushed Joe out of the way so she could get at the handles on my chair. I felt her try to push, I took my wheels and slowly moved them, letting her experience the sensation of pushing me through the store. After a few steps, she stopped, threw her head back and laughed, she clapped her hands and hugged herself. She was overcome with happiness. I think she felt that she was doing something important, she was helping another.

At one point we raised a few eyebrows as we had a race. Me in my wheelchair and Ruby on her tiny little legs. She ran pell mell along side me as I made racing sounds. Joe ran beside her, Mike was pushing me keeping just a little behind her pace. Again, when we were done, she stopped and had herself a giant laugh.

Just before going home for dinner we stopped and all went to a movie. She was exhausted from all the activity. She fell asleep on Mike, who passed her to me, who passed her to Joe. She slept the sleep of the dead. On our way out of the theatre she rode, seated comfortably on my stomach and took a long tall look at the world.

We played a game while waiting for her dad to get something from the car. Did you know that a huge fat guy in a slightly larger than average wheelchair could hide behind just two hands. Well, I can. I did. We played Peek-a-boo as I hid completely invisible to her behind the palms of my hands. She laughed and slapped the wheel of my chair.

Just before bed she said 'goodnight' to me, then thought for a second, and walked over and patted the wheelchair. She wished it a quiet night too. She see's us a separate, my chair and I. She sees us connected, my chair and I.

And she loves us both.

How cool is that?

(You will note that there are pictures in this blog. I bought a camera and Mike slowly worked me through how to take a picture, get it from camera to computer and from computer to blog. He's a patient man.)

Monday, July 14, 2008

Freak Out

Normates are odd. Truly and deeply odd. Not odd 'special' but odd 'weird'. There is a phrase I'm hearing a lot these days, a phrase that usually pisses me off. "Inner freak," would be that phrase and it's usually used by someone who is describing themselves as what was called, variously over time, wild, kooky, zany, madcap. Whenever I've heard it spoken, either by conversants within earshot or on a television interview - the person seems desperate to put it out there that they are just so ... incredibly ... different!

It's like some, if not a lot, of Normates are afraid of their normality. Like they want something about themselves to separate them from the crowd. "Look at me I'm just so ____ (fill in with something not particularly interesting)". "I ate all the chocolates in the house, that's just me! (No dear, that's could be any of us given the right circumstances.) "I just hate to be the first one at a party, you know how I am." (Yes, precious, you are exactly the same as I am.)

Then there's us deviants who all go through the 'We're all the same!" stage. Like those who don't need an inner freak because they wear an outer freak, want desperately to be considered normal. "Cut me, do I not bleed?" (Hello, that just proves you are a mammal.) "We all put our pants on, one leg at a time! (Um, liebschoen, no we don't.) I'm sorry but being different outside makes you different inside. This idea pisses people off but it's deeply true. After two weeks of being in a wheelchair, my insides began to reorganize themselves, my point of view shifted, I almost threw my back out by having to lift one preconception to make room for another.

So the different want to be the same. And the same want to be different. Is that irony? I never know what irony is. That's just me!

OK, all this is cute. Amusing or more AMUSANT.

But to get to the part that pisses me off. Often it seems that those normates who are busy embracing their inner freak, actually freak out in the face of someone who actually is a tad ... different. "I'm just so kooky and zany .... HEY, GET THAT FREAK IN THE WHEELCHAIR OUT OF HERE." "I'm just so different ... HEY, GET THAT KID WITH DOWN SYNDROME OUT OF MY KIDS CLASSROOM."

Having an inner freak, apparently is cool.

Being a freak, apparently is not.

I'm explaining this poorly. I know. I've tried to write this for four or five days and have just given up and decided that what gets put down today gets published today. It's a blog for heaven's sake ... I'm not getting graded on it. Anyways, this all came to a head when we went to see Hellboy at the Barrie Cinema. The movie is about a bunch of 'freaks' and 'oddities' who save mankind even though man is seldom kind to them.

There is an underlying message about acceptance and tolerance and there is a clearly stated sentiment about the wish not to be stared at by 'normates'. So, here I am, sitting in the theatre having that message really resonate with me. I've been stared at my whole life. First because I've been fat since birth. Second because I'm in a wheelchair now. Third, now mostly, because I'm fat and in a wheelchair. And I find the stares incredibly intrusive. Incredibly, incredibly, intrusive. So, when one of the characters, Hellboy's girlfriend, makes a statement that she wishes they (the normates) would stop staring at her, inwardly I cast that message around the theatre. (Get it, get it, get it.)

So when the movie is over, the family grouping sitting behind us. The one wherein the young teen girl was going on to her sister about her inner freak just before the movie, that one. They come round and when they see me, they all gape. They've just seen Hellboy, and fish guy, and a woman that can burst into flames to kill tiny tooth fairies that eat human corpses ... and after seeing all that made up difference, and after they yak about their frigging inner freak, they all, to a one STARE AT ME.

A stare is a hostile non-verbal message that who you are is repellant and disgusting.

So, to those of us with an outer freak - embrace who you are.

To those of you who want to have an inner freak - why not cultivate kindness and compassion, in this society today, that will make you truly what you desire ... a freak.

Sunday, July 13, 2008

List Mania

Well I mentioned it yesterday, so here it is today. These are the 12 weird things that happen to people who are wheelchair users. OK, let's be more honest, here are the 12 weird things that happen to ME in a wheelchair. I know I don't speak for all. I think there's lists to be done for those who have other kinds of disabilities. I think there's even lists for those who are parents or care providers. But here's my list .... The Dirty Dozen ...

12) Pardon, Pardon, Could You Please Speak Up?

I sat down in a wheelchair and suddenly I lost my ability to hear. People actually, sometimes, even yell at me. Others enunciate really really clearly. Or speak so slowly that I lose the meaning of their words. Have you ever noticed how funny speech looks when it's being done in slow motion. I have. Often.

11) Sexlessness

I was buying a package of condoms a few days ago and the clerk said to me, "What do you use these for?" I calmly said, "F#cking" and placed them on the counter. Really, can you believe that? Now I don't want to tell you that I was actually buying them for use in a sex education class, because that answer would have not been quite as much fun. It's weird how people, who used to be shocked by Joe's and my relationship, are now quite convinced that he's my 'carer', my 'staff'. Like suddenly there is a way that they can explain our relationship in their heads that make all the discomfort go away. I'm willing to bet every single disabled person has a story to tell about this one.

10) Invisibility

It's discombobulating to go from being the object of stares from others, from a sense of being highly visible to suddenly becoming invisible when seeking to place an order or receive service in a store or restaurant. Or, how's this, to be waiting in line at a counter and having someone step right in front of you and, worse, having them being served as if you were never there in line, never seen by the clerk (who'd been staring at you out of the corner of her eye the whole time). The other day I was waiting in line at the LCBO with my purchases, the woman ahead was returning booze (did you know you could do that?) and was taking a lot of time. Another till opened, the clerk there said, "I'll take the next in line. The person behind me stepped directly in front of my wheelchair and plopped their plonk down. Like I wasn't there. No I didn't do or say anything, Joe gave me and 'Please' look. So I just waited.

9) Being a Big Baby

What people say to me is bad enough, what they say to Joe is worse. Sitting in the food court at the mall here in Barrie, Joe's had the oddest conversations. Now for those who have never met Joe, he's as non-confrontational as you can get (out of the home) so he usually just smiles and extracts himself gently from the interaction. Something he wishes I would do more often. But recently here's what has been said to him. Once I shoved off to go to EB Games to check on a video game as a gift for someone. A woman, parent to a baby in a pram, said, "He's awfully well behaved isn't he?" Another time, while I was busy being invisible, a clerk said, "Is he a lot of work?" That interaction turned very nasty and it's one we don't talk about much here.

8) A Jewel in The Crown

I've always mistrusted those who use the poverty or disability of another for their own enlightenment and salvation. Like God made nations poor so that rich white kids could go and have epiphanies. Kind of like a Disneyland for the soul. Picture a teary eye-d teenager telling graphic stories of disease and destitution to parent's friends at a cocktail party. I see this sometimes when I ask someone to get something for me that's out of reach. Most people are cool with this but some leap to do it and get this beatific expression on their face as if they are calculating the cost of the jewel that God just placed in the crown that's awaiting them in heaven. Um, yeeeeuk.

7) There But ...

If I had a dime for every time I've heard someone say to someone else in reference to me, "There but for the grace of God ..." Believe it or not I feel God's grace. Apologies to the unbelievers in my readership, but I do believe - and to have it suggested that God specially granted grace to you because you walk and denied it to me because I roll is as offensive as it gets. If you listen carefully you'll hear jewels being pried out of your crown for that attitude.

6) Toucha Toucha Touch Me

Get your hands off me. Really. Stop it. Why do people feel like they can just come up to me and place their hands all over me. Well, not all over, they do have some boundaries. But get your hands off my shoulders, my arms, the back of my head ... DON'T TOUCH ME. Yesterday coming out of the cinema I was coming down a ramp, quickly, and a woman stepped right in front of me. I had to pull up quickly and almost over turned the chair. I was being invisble at the time. She suddenly saw me (because it's hard to notice a hugely obese guy plummetting down a ramp at light speed) and realized that she's almost overturned me. Her hands flew all over my back and shoulders as she apologized. I kept pulling away asking her to stop but she just kept on until HER NEED had been met.

5) Typhoid Mary

What I have isn't catching so you don't need to shrink away in horror or to pull your children to you and away from me. You know they say we only use a small portion of our brain, well that's patently obvious to me! I've had people leave stores because I came in, or flee off elevators - disability isn't catching but ignorance often is - because once one starts, others feel free to do the same. It's strange how mistaken ideas can jump from one person to another without a word being said. I think that's the nature of bigotry some how.

4) I Don't Know Jack

Yes I live in Canada but I don't know Jack. OK, Jack is in a wheelchair too ... but I don't know Jack. OK, he's my age ... but I still don't know Jack. Umm, everyone, everyone (picture me knocking at your computer screen now) WE DON'T ALL KNOW EACH OTHER. There isn't a disability yearbook with everyone's name and favourite colour or anything. We don't meet in secret every year to exchange secret handshakes ... hell some of us can't even shake hands. We don't have a secret wave we do when we see each other like VW Beetle drivers do. So, understand, I really don't know Jack.

3) Stream of Stupidity

Regular readers will know that I often rail against stupid things said to me by complete and total strangers. Recently there's been, "Is there any hope?" and "Are you allowed out?" But that's just a drop in the barrel. It's amazing how people will say mean and hurtful things in a tone of voice that they consider kindly. "It must be awful?" "I couldn't live like that?" "Wouldn't you rather be dead?" If I didn't have a thick skin before I was in the wheelchair, I certainly do now.

2) Being Prayed For

One of the most intrusive thing that happens to me is when someone comes up to me with an offer of prayer. They want to lay hands on me and pray. For my forgiveness (as if disability arises from a sinful state) and for my healing (as if I spend my day wishing and wanting to be something other than who I am). Worse is how that offer of prayer, offered in gentle loving tones turns instantly into anger when it's rejected. Really, anger. Like I didn't allow them to fulfill a need they had and they are angry at me for denying them. Like I'm some kind of prayer whore there to smile and purr and make them feel - powerful. Not me, not ever.

1) Rights Not Privileges

Why do people assume that accessibility is a gift, not a right? When a comment is made about the inaccessibility of a store, I often hear, 'The disabled don't shop here." Um, because we can't get in you dipstick. I don't like it when I get told, 'we make accomodation for those with disabilities' ... um, aren't lights accomodations for the sighted? When I go into theatres there's all these chairs provided for those who don't bring their own. All I want is a space to put mine, you don't even have to frigging BUY ANYTHING, but buying chairs for the walking is expected while providing space to the rolling is INCONVIENIENT. What is that? Accessibility isn't accomodation, it's a reasonable expectation. A human right.

Um, I have to tell you, that in writing this I had to stop several times because I got myself upset. I had to stop once or twice to laugh too ... like at the memory of the clerk with the condoms getting a horrified look on his face and quickly running my order through the till. But this was somehow, wonderful. Like I'd wanted to say it for awhile. I'm sure there are other lists out there ... if there is ... could you cue me to them. Or if you do your own list ... please leave the web address in the comment section. However, I'd like to grow this list to 50 ... so if you have something to add to the list, put it in the comment section.

Cool?

Saturday, July 12, 2008

Hope?

Annoyance has been brewing in my mind like a strong black tea. Yesterday I skipped out of work early to go see the 3D mega-movie Journey to The Center of the Earth. I've been really looking forward to it. And as I anticipated, it was a joyous romp. Completely popcorn pop. I was buzzing when I left, amazed at the 3D images which had blazed in front of my eyes. I even reached out to touch something I knew wasn't there. Joe and I zipped down the ramp into the lobby and I stopped just outside the disabled toilet and Joe crossed the hall to go into the men's room.

I was back in my chair waiting for Joe when I felt a hand touch my shoulder. This always creeps me out. I don't like being touched by strangers. Then a face peers into mine. A woman, the far side of thirty, came into view. "I have to ask," she said, "is there any hope?"

She was called away by an embarrassed looking teenaged child before I could answer, but I managed to mutter, "Not for you" loud enough for her to hear. I think.

As noted here before, a wheelchair is a magnet that pulls toward itself all those who are socially, um, odd. There should be a meme some time about the 10 weirdest things that non-disabled people do around disabled people. It would be tough to restrict it to 10, actually. But the thing that gets me is having my day, my mood, intruded upon. Unwelcome touch and disturbing conversations in the midst of a fun trip to the flicks with my boyfriend kind of alters the sense of the day.

By this morning, the question, "Is there any hope?" had bounced around my head like a ping pong ball on crack. I couldn't settle it down. So, today, this blog really is for me. I'm trying to get it out of my head and down in words. Maybe that will let me get about my day unimpeded by this question constantly forming and reforming in my mind.

So do I have any hope? What do I hope for?

To answer the question that she was obviously asking. Is there any hope I'll walk again? Well, I still walk a little. I don't imagine I'll ever walk a lot again. But this hasn't led to a destruction of hope.

If walking isn't on the hope horizon, what is?

I'm not going to go all beauty contestant and hope for world peace, the end of world hunger, the day the world goes sane. Of course I hope for these. I even pray for them. But that's too easy.

Really, on a day to day basis, what do I hope for?

I hope to make a contribution.

I hope to brew the best cup of tea.

I hope for a few minutes of backscratching when I get in bed.

I hope that there are comments on my blog.

I hope to laugh.

I hope to lecture in Australia one day.

I hope to finish my next book.

I hope our neighbours dog will sun himself in our yard again today.

I hope that my days continue to challenge me and interest me.

I hope that Joe loves me through another day.

I hope to get back to Amsterdam for another holiday.

I hope that Ruby comes to visit this week with Mike.

I hope for ordinary things.

I hope for extraordinary things.

Yeah, there is hope for me. Of course there is. As they say, "Where there's life, there's hope." I'm constantly amazed that someone might think that because I sit in a wheelchair, that my skies are dark, my hopes are few, my life is less. In the cinema, I had just journied to the center of the earth then in the lobby ran smack dab into the center of ignorance. The T Rex and the flesh eating plants were no where near as daunting as that touch and that tone. Looking for a super hero? Anyone in a wheelchair that hasn't turned into a mass murderer - shows superheroic retraint. Trust me on that one.

Friday, July 11, 2008

Cue Music!

We had lots of time to talk. Joe had to walk up the hill to get the car, where we'd parked because all the disabled bays were taken by people who didn't even limp, and he was walking very slowly, very carefully from the taxi which had dropped him off at the door to the store. He reminded me of that children's poem ... there was a crooked man who walked a crooked walk. He was a thin as a blade of grass and bent in the middle. His shirt was tucked severely into his pants which were held up at nearly nipple level by a belt that looked like it had recently been polished.

His steps didn't look painful, but he walked as if he was in pain. He noticed me in the wheelchair and smiled. I smiled back. Old guys like to talk, usually, so I said "Hi." He nodded and stayed focused on the walk. Then he glanced down at my feet and stopped. "Those those Birkenstocks?" he asked. I told him that they were indeed. "They want me to wear something like that," he said. Then he resumed walking, it really was as if he couldn't walk and talk at the same time. Because he brought up the subject of shoes, I looked down to see what he was wearing.

Boots.

Cowboy boots.

My Uncle Jim used to call them "Shit kicker boots." I never knew what that meant, and in case you don't either, they were the kind of cowboy boots that have a high heel and toes that could kick the eyes out of a flea. There was stitching on the sides and, like the belt, they shone as if they'd been rubbed with butter.

"Nice boots," I said while thinking that I understood why 'they' wanted him to wear something else. He was walking like he was on stilts. He stopped. Really. He did. He actually couldn't walk and talk at the same time. It was kind of weirdly cool.

"Yep, I've worn boots like this my whole life, as long as I'm walking I'm going to wear something with style. (Pause, beat beat beat,) No offense mister."

"None taken," I said, smug in my Birkenstocks.

"I may walk awful slow," he said, "but these boots ..."

"I know, I know ..." I said and started to laugh.

He couldn't say any more because ... "Ready boots ... Start walking."

Thursday, July 10, 2008

Peas

So we had a big meeting in High Park in Toronto. The Personal Development Committee, made up of staff and members of Vita Community Living Services, chose to have its summer meeting out of the office and in the park. We had much to celebrate, since inception we have provided either abuse prevention or relationship training to well over 200 people with disabilities in care. Add to this that the 'Rights Group' Vita's self advocate group is nearing its second year anniversary and the fact that we are just about ready to add anger management training, self esteem development to the roster of classes ... oh and we're investigating the possibility of offering self defense classes to members with disabilities as well. Yeah, I'm bragging on a bit, but I'm proud of this group of kids (they are all so young) and their accomplishments.

We'd had one potluck before wherein we discovered that this is a group that can cook! Incredible food made for a wonderful meeting. Last time Joe and I made vegetarian chili, but this time we had to make 'park food'. So I looked up in google for 'impressive salads to take on a picnic' and several hundred selections popped up. We chose the Frozen Pea Salad because it sounded good even on the page. We chopped and prepped as much as possible and then, arriving at the park, we mixed it all up together. It joined the risotto salad, the pasta and potato salads, the quiche, the peppers stuffed with shrimp and rice, the beef turnovers, the lemon tarts and cookies. There were more things but the memory capacity of the aging computer in my mind is dwindling.

The whole group ate for awhile and then the meeting began. For a couple of hours the focus was intense and it didn't matter that we were in a park, suddenly we were simply and only together. Discussing, updating, strategizing. Every single person in the group brought forward the best of themselves and wanted nothing more than to contribute. We've tried to eliminate politics and competition and create an atmosphere were creative risks are welcomed.

When the meeting was over, I felt like I'd been to two kinds of banquets. One for the body. One for the soul. It is possible, really possible, for people to come together in the spirit of service ... that idea refreshes me.

I wrote this blog for two reasons, one, I wanted to brag on about the group. But the other is I've always wanted to do a recipe blog. So here is the recipe for ....

the Frozen Pea Salad ...

16 oz frozen petite peas

6 oz chopped smokehouse almonds

8 oz water chestnuts

1/2 cup chopped green onions

2/3 cup mayo

3 tsp hot curry powder

Mix together peas, chestnuts, green onions.

Mix together mayo and curry powder.

Mix pea mixture with mayo mixture.

Mix in almonds just before serving.

Do not thaw peas before making!

Wednesday, July 09, 2008

At Your Own Risk

A warning booklet should come with the wheelchair. It really should.

Since I've been wheeling myself about I've worn out several pairs of gloves and developed a real set of callouses on my thumbs. Occasionally my thumbs get caught on the wheel and personal injury occurs. OK, that's one warning label.

Once I sat down on a freezing cold wheelchair and thereby froze my butt to the metal on the chair. The pain was immediate and intense, not to mention the skin that ripped away when I got up. OK, that's two.

I had the footrests off and was working at the counter chopping vegetables for dinner. I turned the chair too quickly and ran over my own foot. OK, that's three.

Then there was the time when I was sitting outside the theatre waiting for Joe to come and some guy just grabs my chair and starts to push it, getting me 'out of the way'. The suddenness of the movement almost threw my back out. OK, that's four.

Everyone in a wheelchair knows that total strangers are going to touch you, pat your shoulder, give you unwanted hugs, and they are going to give you constant sad little smiles, it's enough to make you nauseous. OK, that's five.

For an even half dozen, here's this: yesterday I was pushing my wheelchair up a slope and somehow managed to sprain my tits. Really. I didn't know that was possible. I can just imagine telling them at emergency that I was there for sprained boobies. Good God, someone should have told me.

So from me to you, cut it out and paste it on your chair, a warning label you can actually use. Ow, it hurts even to type - I'm going to retire my tits for the evening now.

Tuesday, July 08, 2008

A MFI That's What I Am, I Am

The security guard at the building got up to hold the door for me, he's a wonderful guy with a great disposition. We chatted as I came through the second set of doors to the outside. Sitting on the bench was a fellow probably in his late thirties. It was about 8:30 in the morning and he was still quite drunk. I could smell beer and stale cigarettes from 20 feet away. I waited, quietly, for Joe to bring the car around. We'd discovered the day before that the entrance way underground isn't accessible from the parking lot to the elevator. The management had made a big deal about getting us parking right by the door, which they did, but neglected to tell us that there's no way in hell that the chair will ever be able to climb up and down the steps necessary to make it into the building. So we should tell them that we no longer need parking close to the door because I'm always going to get dropped off out front, yeah we should, but we won't. Good parking is good parking.

After a few seconds of sitting there, beer and cigarette guy - with tats running up both arms, hollers to me, "Hey!"

Inwards I groan. If people are assholes sober when it comes to wheelchairs, they are insane when they are drunk. I glance over at him and say, coolly, "Yes?"

"Are you allowed to be out on your own?" He askes and then lurches over almost falling off the bench.

All sorts of lines run through my head but I simply say, "Yes, it's been cleared with the authorities."

"Good for you then," he says.

He mutters under his breath, "Sitting there all by himself, a fucking inspiration, that's what it is, a mighty fucking inspiration."

Thank heavens, I see Joe pull in with the car. I get into the car and I hear the guy talking with Joe.

We drive away in silence then Joe says, "So you got your papers with you, the one's that say you are allowed out?"

We laugh till we cry.

Monday, July 07, 2008

Journey

I was moved, almost to tears, three times yesterday. It began with a trip to church. I had called to see if the building was wheelchair accessible and was told, proudly, that it was. We found the entrance with the blue wheelchair guy painted on it and opened the door. Inside we found a ramp that was as steep as the side of Kilimanjaro. I was immediately pissed, but said nothing as I knew Joe really wanted to be there. I hauled ass out of the chair and Joe delicately walked me up the ramp and then ran the chair up to me. As I sat down a young, vibrant, woman came in sitting in a spiffy power chair. I asked her if her chair made it up the ramp, she laughed and said that it did but I'd have to move because she goes hell bent for leather up the ramp and then makes an immediate and sharp turn at the top. Brave girl.

During the service two young men got up to sing. I read in the church newspaper as I was waiting for the service to begin that they were a gay couple who wrote and sang spiritual songs at the same time as striving for mainstream notice. Jason and DeMarco, as they are known, sang beautifully and it was easy to fall under the spell of the music. What deeply moved me, though, was looking over during the song and seeing DeMarco's mother and father sitting in the church watching their son sing. They had been introduced to the congregation before the song began and when I looked at them I could only see his mother as his father's face was out of my view. She looked on her son with such deep pride. She glowed as he sang. Tears sprang to my eyes as I imagined the journey she had taken with her son. To be here, in this place, watching him sing with his loving partner at his side - it probably wasn't an easy journey. But she made it.

Later we went to Dominon to do some grocery shopping for the new apartment. I had sprained myself the day before so I wasn't pushing myself too hard or too far. I conferred with Joe as the the ingredients of vegetarian goulash and then wandered around the front of the store. I saw a mother of a young girl, maybe fourteen, with Down Syndrome. She was encouraging her daughter to take the few groceries in their basket through the till on her own. The little girl was very hesitant, she clearly didn't believe in herself. Mom poured self confidence into the child and then stood and watched as her daughter approached the till, emptied the basket, chatted with the clerk, counted out change and paid. Pride flooded mother's face. Tears sprang to my eyes as I imagined the journey she had taken with her daughter. It probably wasn't easy. She probably didn't expect to feel this deep deep pride. But she made it.

As we drove back up to our place in Baxter, I thought about the two mothers. I thought about that look of pride. Wishing I'd had that look, even once. But then I remembered that I had, and as I did, tears sprang to my eyes. I had been lecturing for over a year and Joe had steadfastly refused to come and hear me speak. At first I was deeply hurt and felt rejected but then I came to understand that he was afraid to be there in the audience, to feel the fear that I would feel. He had stage fright for me and couldn't get over it. Then I was asked to do a talk only blocks from where we lived. It was for Central Toronto Youth Services and they wanted me to speak about 'homosexuality and the disabled population' or something such. I prodded Joe to come, and he relented. During the talk he looked up at me like a deer in the headlights, I don't think he blinked for the whole 45 minutes of my talk. When it was done and the audience responded, loudly and postively, I saw pride in his eyes. It was a journey we'd taken to gether. It definately wasn't easy, but we made it.

We make the journey.

Then the journey makes us.

I think that's the deal.

(for information on the gay couple who sang at the church please go to http://www.jasonanddemarco.com/ )

Sunday, July 06, 2008

Rhymes with Orange

Good morning! We've just spent our first night in our new apartment. When we took it, we took it a month early so that we'd have time to slowly move in, get things arranged. As such we spent yesterday sitting here waiting. The cable was to be installed between 11 and 1 and the new bed was to arrive between 2 and 5. I can't tell you how tiring a day of waiting can be.

Joe had moved some stuff down on Friday while I was finishing up the first of the two Summer School courses that I taught. So we had a few basics here, a television, a dvd, linens for the new bed, a few plates and some frozen food. I got myself set up right away to see if I could hop onto an unsecured wireless network, and sure enough there were four or five that made themselves available to me.

By 2:30 the cable was in and the bed set up. We immediately headed out of the apartment and into our new neighbourhood. We are as close to the center of the city as it is possible to get. Our first stop was a coffee shop that has tables and chairs set out on a patio right on Yonge Street. Joe went in to order and I stayed there parked at a table. After living in the country for 17 years, I had to close my eyes now and then because there were just so many people, doing so many things, going so many directions that I felt a bit dizzy.

I first saw her out of the corner of my eye. She was a very big woman, nearly my size, on a very quick scooter. In the basket in front of her were several gaily wrapped packages, she wore vibrant colours daringly mixing florescent orange with a pink that seemed to strobe. She had tied a bunch of balloons to the handlebar of her scooter. One of the balloons was silver with a message that said, "Golly you're 50!" and the rest brightly danced around the silver messenger.

She crossed the street and then, just as she was passing in front of me, a gust of wind caught the balloons and they bobbed down around her face blocking her view. She stopped and disentangled herself from them pushing them back up and into place. She started again, and again the wind blew them down on her. She threw back her head in a throaty laugh and smacked the balloons upwards. And away she went.

Just then Joe came out of the shop with our teas and sat down with me. He asked me what I was smiling about.

"I think we're going to be happy here," I said.

Thursday, July 03, 2008

Mini Vacation

For the first time in the history of Chewing the Fat, I'm going to take a blog breather. I'm finding myself sitting at the computer struggling to write something just because I post daily. For the next while, I'm going to post occasionally, when something strikes me. I want to have a bit of a vacation and thusly I'm gonna pull back a bit. Just for a couple months. I'll go back to daily posting first week of September, so pop by occasionaly over the next few weeks and you'll find something here now and then. To those south of the border, we've had a wonderful Canada Day up here, have an independance day worthy of the name - make sure that those who can't, can for the day.

Ta, gentle readers, see you again, regularly, in September and occasionally during the summer months.

Wednesday, July 02, 2008

Transition

We were both quiet on the way down. The apartment in the city became ours today and we were picking up the key and dropping off a few things. We drive a Volkswagen beetle and what with the wheelchair in the back, there's not really a lot of room for other stuff. In a big bag behind Joe's seat were a few things we knew we wanted to have. A kettle, some tea bags, two cups, toilet paper and the like.

Arriving we had to sign a whole wack of new papers then go up for an apartment inspection. The guy walked Joe around the apartment ticking off the various rooms as clean and damage free. The whole place has been redone. New floors, new kitchen, new bathroom, so the inspection took only a few minutes. I sat in the front room looking out the windows at the view. We are only on the fifth floor so the view isn't spectacular but it is nice. On the way out, the superintendant told us that our neighbour also is a wheelchair user and is 'very nice'. I think he thought we'd be comforted to know that the cripples had been placed near one another. OK, well then.

After he left, we made a cup of tea and I sat sipping it as Joe went downstairs to get other things from the car. Alone in the apartment, hearing every movement echo in the empty rooms, smelling the freshness of the paint, feeling the fear of change, I pondered. How had we ended up back here. Apartment living in Toronto. No more land, no more private residence, instead a place smack dab in the center of the city.

I moved my chair around, careful not to slop hot tea on me, and checked the place out. I had a sense that we could be very happy here. That this apartment gave us the chance to regroup and think about our future, where it would be, how it would be, and what it would hold. Suddenly I felt too old and tired to be in transition, but I knew that I was and that was that. There is no choice here.

In teaching summer school I realize that I still love lecturing, teaching, inspiring, challenging and learning. In talking to the folks out in BC about my return lectures in September and, of course, New York in July and Colorado Springs in August, I still feel the excitement of travel and the opportunity to influence and change. Going into work at Vita I still feel the challenge of everyday kind of organizational change and challenges, I still feel the value of what I do and can see, clearly the path I'm on.

But something is indeed changing. I feel a deeper need to see the results of the work, to see projects through to completion and to know that things are different because I was there. That I mattered, somehow, in the long run. I imagine that all of us who get older think these things. Wonder about the purpose of their lives. Hope that they have mattered and have made a difference.

Sitting in the empty apartment, mentally placing my desk here, my computer there, the couch over there ... I wished I could arrange the future just as easily. We still face the question, if this is short term, where is long term? If not here, where?

Oddly, I was sitting in my wheelchair thinking about my future and my wheelchair wasn't even part of the equation. It didn't matter that I was sitting, rolling. What mattered was that we had rented an apartment and thereby bought time to think, to transition, to take control of the changes that our lives would face.

We left the apartment and went over to the movie theatre, a block away, to catch "Mongol" a movie I'd wanted to see for awhile. On our way out we ran into an old friend we hadn't seen in years. The greeting was warm, the hugs warmer. There were no questions about me being in a wheelchair now, there was just expressions of genuine joy in reconnection. We mentioned that we were moving and got an immediate ...

"Welcome home!"

And suddenly, I knew, it would be OK.

Tuesday, July 01, 2008

Canada Day

I saw him yesterday in Barrie. Standing alone at a bus stop. Waiting to go somewhere. He attended a workshop I did several months ago for people with disabilities. Yet here he is, out on his own. During lunch at the workshop, he sat with me and told me about the days when he lived in the institution. About how, back then, if you said 'no' to staff they'd have hurt him. He talked about the place like a prisoner talks about his jailers. He is incredibly happy that they are closing all the institutions in Ontario. He says that as long as they are open, there is a chance they'll send him back. Once the doors close, he says, he will be free.

And here he is free.

We are only weeks, maybe months away from the institutions in Ontario being empty. With everyone back home again. Daily at Vita, I meet the newly free. I see them move about freedom, savouring it. Cherishing it.

And I realize, today, as I see him that soon, I will be able to sing the Canadian anthem. Something I've refused to do for years.

Because the true north may be strong, but it hasn't been free.

As long as the disabled remained captive in large facilities we have not been free.

But on the day the last captive leaves the institution here, I will sing it again. Though other provinces aren't done yet. We are here. This bit of Canada will be free.

The true north.

Strong and free at last, thank God they're free at last.