Rights! A Southern Ontario Opportunity (todays post follows)

Next Friday on November 7th, or three days after the election we thought would never end. Amy Tabor is going to be in Toronto doing a presentation on the Rights of people with disabilities who live within service systems. Many agencies struggle with rights and responsbilities for those in care. Someone once quipped that the only ability that agencies care about is liability ... well there's a reason for that. Amy is an expert in helping agencies ensure that rights are respected and well incoroporated into agency policies and into the every day life of those who live with support.

For information on this conference please call Rose Castronovo at Vita ... their number is 416-749-6234 at extension 211, or email her for a copy of the flyer at rcastronovo@vitacls.org

See you there!

I'll be the fat guy in the wheelchair, stop by and introduce yourself as a 'Chewing the Fat' reader.

Today's post follows.

The Moment of Decision

We landed in Saskatoon after an uneventful flight. An enthusiastic and very young woman was at the door and prepared to help me with my wheelchair. After the last incident when my chair was stolen from the door of the aircraft, it as festooned with tags declaring it belonged to me. It looked a bit like a float. I always struggle up the ramp, at my weight it's unfair to ask anyone to push me up hill. But it wasn't much of a walk and I made the top successfully.

We chatted about the weather here, the weather in Toronto, upcoming news of the weather. We pulled out of the elevator on the baggage floor and I saw the kiosk for Avis Rental Cars. I suggested that she leave me here with our carryon bag and Joe go get the other bags. He could meet me here later when he gets the keys for the car. She agreed, he agreed, and suddenly I was alone. I like Saskatoon, indeed I like Saskatchewan, so I was looking forward to the next two days.

Between me and the counter there were several chairs, people were waiting in those chairs for travellers to come out through the double doors. A very young couple were there with a 5 or 6 year old girl with Down Syndrome. I figured they must have been baby sitting but then I heard the child call out for her mom, and the 'babysitter' turned out to be the 'mom' in question. Assumptions and stereotypes - annoy me, expecially mine about others.

Turns out that mom and dad and toddler were a very cool family group. They kept looking anxiously towards the door awaiting someone clearly important to them. Their anxiety seemed to grow every time the door openned and their party did not come through. Finally a pretty and fashionable woman came out, just by looking I could tell she was dad's mother. They both had faces carved by the same genetic hand. He stood up, smiling nervously, mom picked up the child. There was tension in the air.

I didn't know the story behind this tension, but I could guess it. The two young parents stood there smiling and waving a greeting. She stood still for a moment as if frozen in indecision.

Then time started again and she moved forward, pushed partly by the others now coming through the door.

Mom first hugged her son. Then she glanced at the child who was squirming to get down out of Mom's arms. Once on the floor she ran at her grandmother with her arms out. A hard face melted and a child was picked up.

My guess?

It's going to be an OK visit after all.

I Wish I Could Tell You More

I saw an act of kindness today.

And it was beautiful.

A man with a disability was the recipient of courageous kindness, a kindness that cost. I can't tell you the details because too many people would know him, guess that I'm talking about her and the whole confidentiality thing would be violated. But I had to tell you ... something, anything.

When one is paid to care, kindness can be hard to generate. One does things because one is expected to, receives a salary for, and the impulse to kindness can be dulled. Not that people who are paid don't care, it's that care when sold becomes somewhat of a commodity. Money muddles everything. But it care still doesn't mean anything more or less than care. But kindness - the impulse towards gentleness - happens in those moments where money doesn't matter. Kindness can't be bought, it can only be given.

When one is supposed to care. Thicker than water kind of caring. Kindness can be hard to find. Anyone who sits through a tense family Christmas knows that the gene pool can need draining. Kindness isn't a condition of relationship ... its an exceptional thing that can be spontaneous between strangers and abscent with brothers. Kindness is because it is, it exsists because it wants to, kindness can't be required, it can only be given.

Kindness really really inspires me. True deep down courageous kindess, the kind of kindness that stands in the way of bigotry, of prejudice, of hurt - the kindness that reminds one of all that is good and all that is holy - that kindness is so beautiful that it can be hard to grasp.

But I saw it.

It was a kindness that came with determination. A kindness that came with conviction. A kindness that meant, for a few seconds, she was able to understand with him ... not for him. A kindness that led understanding to action. And action to change.

It was a kindness that came without strings. She expected nothing back. Wanted nothing back. It was the kind of generous offer that is made without expectation. In fact, should she read this I don't imagine she'd know that I'm writing about her. It was unselfconcious kindness. You know, the incredibly beautiful kind.

I really did see it.

And I'm still in awe.

I see lots of nice things done out of a generous spirit. Really, I do. But kindness is something else. I don't use the word kindness for the little acts of courtesy that people perform for one another. I use the word rarely. It's one of my favourite words. It's a word with a warm soft spot in the middle. It's a word that you can cuddle up to. It's a word that tastes fresh on the tongue.

So to the woman who acted out of pure motivation, out of genuine kindness. Thank you. You made me believe again.

... in what's humanly possible.

Privacy Please

So I'm having real problems with my feet and am in desperate need of shoes. It's at the point of crisis. I decided to go to a place that specializes in shoes for those who need specialized shoes - a no brainer but it took me a long while to get there. Joe had picked me up at the Vita office and I was moaning to him about the pain in my feet and my need for shoes, I looked up and saw a sign for a specialty shoe place right across the street from the office. We went over, immediately.

It was a little difficult to get into as there wasn't an obvious cut curb and there were two small baby steps into the store, but we managed to get me and my wheelchair into the place. Most of the shoes on display looked quite normal but they did also have, proudly displayed, the type of shoes you imagine nuns wearing under habits. The young woman there listened carefully as I began telling her what the problem was. At one point, when she was talking to Joe (not me) I pointed at my face and said, 'Over here' and she apologized and never did that again.

About half way through my description of what my footwear needs are now that I'm in a wheelchair, another customer came into the store. She explained that she was there to pick up a specialized insole for her daughter. The clerk asked her if she wanted to come back in a half hour or so, she said no, she'd wait. Then she stood there just off to the side listening to every word being said and watching my feet being measured and fiddled with.

I am an extremely private person - having a blog may make this hard to believe but on blogs I choose to share, what you know of my is what I decide to let you know. I found her gaze and her interest in the conversation about me feet to be intrusive. I felt exposed. I know, I know, I listen into other converstations, we all do - but I don't stand and watch and make my presence an intrusive element in someone else's conversation.

At one point I was asked a question and I said, 'That's simply to private to talk about in front of strangers.' The clerk nodded, agreeing. She still didn't get it, still didn't back away. By now she was standing virtually beside Joe leaning over to look at my feet.

I know it must seem, from other stories and situations here on the blog, that I have quips at my ready avail - always there on the tip of my tongue. I didn't know what to say. So I said nothing.

I have always been (that's always) an advocate for privacy rights for people with disabilities. From my first days working in Glendale, I was shocked at the complete disregard for privacy rights for those with disabilities. Since then I've devised trainings on privacy, written about it in my books, railed at meeting about the need for privacy - of body, of space, of information. Now that I'm in that 'class' of people that is seen differently because of disability, I am even more convinced that we need to figure ways of doing business that creates healthy boundaries. I've been asked my weight, in front of customers in a pharmacy, I've been asked my income, in front of customers at a wheelchair store, I've been asked my 'diagnosis' having tea with friends in a bookstore. (I have witnesses for all these examples.)

They have some shoes for me to try on today. I'll be stopping by after work. But I've made a promise to myself - if there are customers there, I'm going to request going into the workroom at the back to do what needs to be done in private. I should have done that before.

But, then, I always know what to do.

A day later.

You're Going to Get It Too

There are many ways to experience disability. Some roll in a chair, some use a cane, some use their hands to speak ... others have disabilities that are much harder to see. I get all that. But there are other, wee disabilities, that come with just living and getting older.

The Disability Called Age ... how to know you've got it ...

1) This morning my computer told me that my password had expired and I had to sign in with a new password. I panic at this. I only have one password that I can routinely remember. Every time I change my password, I sit down at the computer to sign in and can't for the life of me remember what the hell the new one is ... Oh No! It's cause for real stress in my day.

2) Gotta go,gotta go, gotta really go. At a certain age you just should never wear tan pants again. You know what I mean. It's awful when the groans of pleasure that emminate from your apartment come when you are having a great pee at 3 in the morning.

3) Suddenly I'm going to bed earlier than my parents sent me as a child. As it approaches 8 o'clock in the evening, I start to think about heading to bed to read for a few minutes and then it's lights out. Often I wake after a deep sleep and look at the clock ... what a shock when it tells me it's only 10:30 at night.

4) Have you ever noticed that you make the same sounds of pleasure when you bite into something that tastes great that you do when you have sex. We had breakfast at Cora's the other day and it sounded like we were in a bordello for heaven's sake.

5) Ummm ... there were five when I sat down to write this ... there were ... there were ... oh look cookies.

Hello Hello, It's Me - Dave

I'm a good shopper. I have shopping skills. I know a bargain, I know a scam and I am very seldom duped. I enjoy comparison shopping and I will sit in my chair for the few minutes it takes to figure out if the larger can is cheaper per ounce than the smaller can (often it isn't). I don't do this because I'm tight with my money, I do it because I can - because this is sport for me.

I just didn't realize what it must look like.

I just didn't realize how people love assumptions.

This was a weekend spent in the kitchen. On Friday after work we went to the big grocery mart to pick up the fixings for making a vat of chili as we intended to do some canning. We like having home made food to come home to after a spell on the road. And, if I may say so, we make the best chili that there is to be made. When we left work Friday I didn't want to go straight home so we decided to get the stuff so we could make the chili first thing Saturday morning.

Joe went off to pick up some Imperial Cheese (the sharpest toast cheese you can buy) while I sat and did the beans. I studiously arranged the kidney beans by price, automatically eliminated the ones that were overpriced and then began the math comparing the rest. I was almost done when I heard a woman behind me say to her husband, "It's so sad."

Well there are lots of things to be sad about so I didn't automatically think that she was talking about me. After all, it isn't always all about me. So I just continued on picking out the beans. We use a variety of beans in our chili, so once the red kidney beans are done, it's time to work through the white kidney beans, then the Mexican small beans, then the black beans. It takes a few moments.

Then I felt a hand on my shoulder and I glanced up to see a woman, maybe 40 - maybe more, looking at me with eyes glistening with tears. "Would a few extra dollars help?" I stared at her stunned and then realized that she must have thought that, because I was disabled, because I was careful shopping, I was really poor. I sputtered out a response, "No, thank you, really, I'm alright."

She smiled a sad smile, "You are very brave."

"No really, I'm alright for money, I just like to ..." but I stopped talking because I knew she wasn't listening. She had seen what she wanted to see, a poor, dependant, disabled person making a brave attempt to live within his pitiful means. Sick rose up in my stomach and I fought the impulse to buy expensive beans (but let's not be hasty, I'd already done most of the math).

No wonder people fear disability, fear becoming disabled, because when they look out at disability they look in at prejudice and preconception. When they see someone with a disability living a full life, they have to factor something else in - they have to make it exceptional in some way.

I left the store wondering if anyone would ever see me again.

As big as I am, would I ever be visible to someone again.

Would I ever just be Dave living a Dave-ly life ... or will I always be - crippled.

POLL results

A few weeks ago.

It was still warm out and I was sitting in my wheelchair at the side of the road, waiting for Joe to come around with the car. I park just off the sidewalk so I don't block people as they rush past. I was joined by a fellow, who lives in the same building, who uses a walker. He was tired by the time he reached the end of the driveway so he asked permission to join me. He turned the walker around and took a seat. Very clever inventions thoughs walkers.

We, of course, chatted weather. It's a Canadian staple and a way that you establish that you a) can carry on a conversation and b) are not some creep who slides from weather to weird - it's a litmus test for socail skills up here in a country where weather more often than not is WEATHER. We then moved on to the next thing that old guys talk about (I remember when it used to be sex) which is of course, health. He asked me how long in the chair, I asked him how long in the walker.

Slowly he came to tell me that his using the walker was something that he's adapted to readily. He loves the damn thing. It gets him around. He can put his shopping in one part, sit on one part, stand and look the world in the eye with another. But, he told me, that almost all his friends - BD (before disability) friends haves slowly exitted his life. He doesn't understand why because he's the same guy with the same interssts, with the same sense of humour. But that didn't seem to matter. Suddenly the walker because too much to transport, other excuses were found. And now, he's lonely.

A few years ago.

I was in Virginia doing some work there and, as it was a while back, I don't remember how I ended up doing a meeting with mostly parents. I know it wasn't a presentation, it was a meeting. But no matter, not important to the story. I was telling them about a situation where I was in a store shopping for baby clothes and another customer and the clerk were trying to figure out what to buy for a Down Syndrome baby. I helped them out. (the full story is here on the blog some where) I told them that the most important gift, beyond baby clothes and baby toys - was congratulations.

One of the parents in the room got very teary and told me that no only did she not get congratulations, she didn't get the presents of clothing or toys. She got the gift of abscence. Her friends just stopped coming round, stopped phoning and visiting. It was like one day she was 'in' and the next day she was 'out'. She was devastated by their betrayal. Hurt beyond words that, when she needed friends, they simply weren't there.

A few days ago.

I put a poll on the blog about 'community' asking if there was a disability community. One voting option was 'community or not, I find disability an isolating experience'. Almost 20 percent of those who voted, picked this one. Chewing the Fat was established to create a little community - but it is a virtual community. Virtual communities can't bring soup for illness or casseroles for tragedy. Virtual communities can't hug and hold. Virtual communities are wonderful for what they can do but the do not replace the day to day need for friendship and companionship. To sit with someone and laugh until you cry, or cry until you laugh.

I do not understand why the typical community flees from disability. And I know, I know, I know, there are many that don't. But those that don't turn away don't excuse those who do. I've heard stories of isolation so often. Loneliness can be epidemic amongst those with disabilities.

Somehow we need to find ways to make a bridge from the virtual communities we have created into the real worlds that others have created for us. I'm not sure how.

What sayst you all?

The Bestest Present of All

So we decided to go out for a beer. I need to let the secret slip. I haven't had a drink of any kind of booze for almost three years now. I've lost the taste for it. I still enjoy the environment of a pub, I just sit there (primly) in my wheelchair and order tea. Anyways, we decided to go out for a beer. I was a bit worried about getting back because the bar we'd chosen was downhill from us. So getting there was easy. But downhill one way is uphill back. Even so Joe felt we were up to the challenge.

On arriving we were greeted by the bartender, who we used to know from our Toronto days long past. Several people stopped by the table to say 'hi' and 'welcome back to Toronto'. It was nice, albeit surprising. I didn't think that our absence would be noted or our return greeted. I thought we were a little more anonymous that we apparently are.

One old guy, he's our age, stopped by our table with a grin. He'd heard that we'd moved back to Toronto and said he was hoping to run into us because he had a story to tell. He mentioned that he had just had a grandson and before we could congratulate him he raised his hand so he could continue uninterupted. His grandson was born with Down Syndrome.

He recounted an evening in the bar which happened, maybe 25 years ago. He had made some comment that I thought was derogitory to people with disabilities and I called him on it. We got into a furious debate and I'd called him a bigot. As he spoke I began to recall bits and pieces of that argument. Believe it or not I don't have that argument very often - not as often as I'd like actually. Suddenly it all came back to me. We were at our corner table, smoking furiously, and he and I were in a shouting match. I told him that it was unthinkable that someone who experienced prejudice should espouse prejudice. (I still believe that.) Anyone from any kind of minority should have a deep understanding of what it was to be pre-judged, to be seen as a member of a group rather than an individual, to be dismissed without having been met.

Soon after our argument, he took the opportunity to volunteer at his son's school in the reading programme. He and his wife had separated (she was intolerant of her husband being gay - who'd a thought) and he wanted a way to stay very involved in his son's life. One of his jobs became reading to the special needs children and in no time at all he discovered that 'special needs were typical needs' (his line and I'm going to use it again and again and again). He fell in love with a little girl with Down Syndrome and was surprised at her capacity for 'just being human'.

Meeting that girl prepared him for the moment his son told him that they were going to have a baby with Down Syndrome he was thrilled for his son. 'It's a different journey but the same destination' (his line and I'm going to use it ....) He got all teary as he spoke about his grandbaby and how all is fine with family and with life.

Then he thanked me for calling him a bigot and making him think. He said that an encounter that I probably didn't even remember (I didn't until he brought it up) made a difference in his life, a difference he was grateful for. When he was done I gave him a few of the 'Words Hit' cards that I carry in my wheelchair bag. He read it, grabbed me into a big hug and said thanks.

We stopped several times on the way uphill home for Joe to catch his breath, he is a year older than me, and at one of the pauses we reflected on the conversations we have in our lives. We never know who hears our words, but we can be assured they are heard. Suddenly, right on Yonge Street, Joe pulled me into a hug.

It was his birthday and I kept getting gifts.

A Big Day in our Neighbourhood

On this the 23rd of October in the year of our Lord 1952, Joseph Victor Jobes was born in the small town of Ocean Falls in British Columbia. For 39 of his 56 years, Joseph Jobes has lived with me. In celebration of Joe's birthday today, I give you, 10 facts about Joe that you probably don't know.

1) Beyond having somewhat bad knees, Joe's primary diagnosis is that he has a disability in the understanding of pop culture. If he could organize life his own way, he'd only ever listen to classical music - he doesn't understand the difference between pop, rock or alternative. It's all just noise to him.

2) Joe has a disability antenna that's just as finely tuned as my own. If someone says the 'r' word in a television show or movie he let's out an audible harrumph and looks at me like I'm supposed to personally seek out and bitch slap the actor or actress who used the offensive language.

3) Scenes really bother Joe. He usually just wants me to stay calm and be polite in the face of circumstances that I plan to be anything but calm and polite. However, when someone sets him off, he sees me like a personal pit bull and he'll give me 'the nod' which means - 'go get'm'.

4) Joe's difficulty with being culturally out of step goes far beyond his thinking that Coldplay is tossing snowballs in winter. He also thinks that slapstick is a genius form of comedy. He can be reduced to tears by a pratfall. Poor dear.

5) When Joe gets tipsy, his sense of humour becomes incredibly ideosyncratic. He tells jokes that only he gets. Then when everyone looks at him with confusion, he gets the Jobes family, 'what's wrong with the rest of you' look on his face.

6) He won't admit it, and you'd never guess it if you met the two of us, but Joe has a quicker temper than I do. His eyes flash and his tone changes, it's lightening quick. He's got everyone fooled though. His quick laugh and gentle manner, which is his public face, leads people to think that he's the long suffering partner of a curmudgeon like me. Not so, people, not so.

7) When I give my lectures, I tell at least one story a day that has a private joke in it, meant only for Joe's ears and that I know only Joe will get. It's my way of acknowleging him, personally, during a day when we are surrounded by other people.

8) Joe likes to think he is handy. He owns an electric drill. When he gets to use it, he struts around like a lesbian on a construction site. But in fact, like me, he is pretty inept with home repair. He's getting better at assembling things that come in kits, however.

9) Most people who know us are surprised to learn that Joe's last name is Jobes - not 'and Dave'. We've been together for so long that he's Joe 'and Dave' and I'm Dave 'and Joe'. I like that.

10) After 39 years of living together, Joe can still surprise me with an insight, delight me with a joke, inspire me with courage. I'm a truly lucky man.

So please, Fatters all, join me in wishing Joe the best birthday that it's possible for a dignified man of 56 (a year older than me) to have.

Cheers!

The Victory

I am sitting here, and have been sitting here for 20 minutes, trying to think about what to blog about today. Little ideas have flitted, to briefly to be caught, across my conciousness. But nothing comes to mind.

You see yesterday I got up and went to work, spent the day at work, then I went home, cooked supper with Joe and then watched a bit of television while having supper. After all this excitement, I went to bed to read.

An ordinary day.

That's all it was, an ordinary day.

A day like everyone else's - the only difference was that it was lived by me.

Sometimes, I catch someone glance at me. I see their thoughts on their faces. They wonder how I manage. They ask themselves what it must be like to be disabled. They titilate themselves with the 'horror' of a life lived with a disability. I can't imagine what they imagine.

Mostly because my life is a series of ordinary days. Get up, get about my business, eat, poop, sleep. There is nothing inspiring, nothing extraordinary about a life lived with the thudding repetitiveness that comes with work and worry. So when I get those glances, when I see the 'wondering' and the 'imagining' - the ordinariness of my life makes me almost giggle.

But I think the success of the disability movement, if I may be so bold as to suggest a measure, is the extraordinary ordinariness of everyday life as lived by somewhat less than ordinary people. Sitting in a cafeteria watching a guy with Down Syndrome wipe sleep out of his eyes as he chows down on breakfast - an ordinary scene. An every day sight. Yet, still, a victory of unimagined proportions.

So I have nothing to write today because it was only a typical day.

Not worthy of comment.

Except to say that I am thankful.

To experience typical days in a less than typical way.

Look at the Assessment on that Guy

I was very dutiful. As the time for the assessment approached, I made a list of things that I'd really like to talk about. Then, I made a second list, 'inaccessibility in the apartment' and there I outlined the various things that were blocks to full accessibility. I had no idea what OT's did but I'd been told that they were experts in mobility aides and in adapting environments. At nine o'clock, I was ready, perched in my wheelchair waiting.

After a call explaining that traffic was bad, I put my lists aside and began doing some work here on the computer. Shortly she buzzed that she was downstairs and wanting to come up. While I had gone into many a family home for meetings and consultations over the year, no one had ever come to my home for the same reason.

She was a slight woman who spoke with a slightly Asian accent. She thanked us but refused the offer of tea and simply got about her work. We had to do the forms first, she quickly figured out that I 'got' forms and knew what they were for so we flew through those. Then that done, she leaned back and smiled, 'That's that done, now we can begin.' She asked me a lot of questions about my mobility, what worked for me, what frustrated me. What I needed, what I wanted.

With every issue she talked to me about adaptive devises, things I didn't even know were invented but seemed like they were invented specifically for me. Her list of items that would be useful for me began to grow. We were through her list and I glanced over at mine. There were two issues that I had starred. These weren't starred because of importance but because I'd decided that if she seemed half way human in her interactions with me, I'd ask them. They were embarrassing and personal questions but they were things I wanted to know.

I asked. We had a frank discussion about what possible adaptions could be made, where to look for resources ... it felt great to get this stuff out into the open.

I may know what it's like to be in a chair. But she knew chairs.

I may know what it feels like to face barriers in every day life. But she knew adaptions.

But what I really know is heirarchical voices and patronizing manner. Luckily, these were not in her skill set.

It was a long wait for this assessment, but it was worth my while. Over the next few weeks she is going to look at getting me set up with an electric wheelchair, she's going to magically make my couch more accessible (don't ask), and she has a few other ideas as well to do with issues a little to private to blog.

I am well and truly assessed and well and truly impressed.

It's Assessment Day

Yesterday I crashed. Joe got us saying that he wanted us to go to church. I looked at him and told him that I just couldn't. I was tired, wanted to stay in bed and read, it's our first whole day at home for awhile. We agreed that'd he'd go and I'd stay back. It isn't typical for me to have complete 'alone' time and I must say, it was nice - for about 20 minutes. True to my word, I snuggled in bed and read for much of that time.

I felt a bit better by noon but an hour later, I was cold and shaking. Exhaustion. We canceled our evening out with friends and we both hunkered down to a nice dinner and a quiet night. Somewhere about 8, I heard Joe get out of bed and start to tinker around in the front room. I came out to see what he was doing. He reminded me that I have the OT assessment in the morning, the assessment that will hopefully begin the process for me getting a scooter and perhaps even an assistance dog. I've got a series of questions for her about mobility issues at home, about various things I wonder if there are adaptive aids for. Trouble is, I've spoken to her on the phone, she sounds like she's 12.

Joe stayed up an hour or two longer, making the place tidy. He's very much like that. We hired someone, back in the mists of time, to clean our apartment once a week. Joe spent the day before the maid came cleaning the apartment. He didn't want him to see it messy. Really.

So she'll be here at 9 to do the assessment. I'm more anxious than I ever thought I'd be. The very word assessment has within it the sense of judgement. I've never noticed that before. Well, what if she doesn't have good judgement? She wasn't picked for me or my needs specifically, she's just the next OT on the list. So some of my future hangs on whoever walks through my door in a couple of hours.

Wow. So that's how it feels waiting for me on assessment days.

But, enough of that, I'm living life on the other side and need to realize that I teach self advocates about speaking up, about being heard, about saying no. I teach self advocates that they have rights. That they have a responsibility to use those rights. But now, as I face a stranger coming into my home - rights are the last things I'md worried about. It's not rights I want, really, it's respect.

I wonder if I'll get either.

A 2nd Ending

Finishing the lecture in Connecticut on Thursday, I got in the car - relieved. I had spoken at a conference of nurses, they are universally regarded as a 'good audience', and I was done a nearly month long tour. I'd been in 5 time zones, over 20 hotel rooms and 12 cities. I'd had my wheelchair stolen and recovered, I'd had my footrests disappear and then be restored, I'd made it. It was then that Joe told me, minutes after beginning the 8 hour drive home, that he'd made a mistake, that I had one more gig - on Saturday at a self advocate conference.

The next few minutes weren't pretty. I wasn't very nice. I flipped. I had marked this conference in Bristol as the end of work and the beginning of home time. The idea of being home late Thursday and then driving Friday up to overnight before a Saturday gig was just too much for me. I was angry. Pouty. Perhaps a wee bit childish. And I said some not very nice things to Joe. It wasn't that I didn't want to do the work, it was that the work took my by surprise. I'd had an idyllic weekend planned. Part of that plan wasn't giving a lecture.

Friday I found myself at my office at Vita, catching up on emails, answering phone messages, doing stuff that needed to be done. I had resigned myself to the trip up to Port Elgin and when Joe came for me at 2:30 to begin the drive, I could see that he was really tired too. We decided that we would simply enjoy the fall colours. I'm sure he did, about twenty minutes into the drive I was snoring softly beside him. We arrived at a fairly unique venue, it was a CAW (Canadian Auto Workers) Family Training Center just south of Port Elgin. The facility was built with disability in mind and the whole thing was incredibly accessible.

I sat in the car while Joe registered and chatted with the Self Advocate chair of the event, JP, an affable guy with Williams Syndrome. He told me about the conference, about his role in it, about his hopes for the day. Joe came out with our key and we were off to our room. Every door entering the complex is fitted with a wheelchair button to open the door, every button works. Just as we were getting to our room a guy with Down Syndrome carrying a mucky huge florescent pink stuffed dog passed us in the hallway. He nodded greeting and was on his way.

Unaccompanied.

I was getting into the spirit of it.

At breakfast the next morning the cafeteria slowly began to fill with people with disabilities of all stripes. There were cheerful greetings as people talked about the party the night before and the day yet to come. There was such a nice spirit in the air. I was thrilled to be part of that. As I've spoken at several such self advocate conferences, many people with disabilities stopped to greet me and wish me well on my talk that morning.

At 9:00 we, an audience of over 100 self advocates and myself, were hard at it. Doing a keynote for people with disabilities is quite different from doing a keynote for those without disabilities. It's both much more fun and much more work at the same time. There were moments of pure joy and laughter and the time flew by.

We ended with the chant: We take care of ourselves, we take care of each other.

That's the goal.

That's the intention.

That's the point.

Scoot On Over

Learning things about yourself - what a fun part of the journey. Ain't self awareness grand! We arrived in Frankenmuth with a great amount of anticipation. We've been there several times before, but always in the winter. This was our first visit where the streets were clear of snow. Frankenmuth is odd. It's like a little German village in the middle of the wilds of Michigan. I'd always wanted to wander the shops.

We got there and drove to the hotel by hordes of tourists and all I could imagine was struggling by them on my footless wheelchair. Joe knew I was disappointed but suggested we go shopping at the new superstore on the outskirts of town. They'd have those electric carts that I'd be able to use, I'd be free again. I agreed reluctantly, maybe even petulantly.

We got to the Superstore and Joe drove the cart out to the car. I got in, it was a tad tight because, well, I'm a tad big. But the cart was sturdy and I soon got the hang of driving it. But I had sweat prickling my back as I noticed people notice me. I wanted to say, somehow, 'I'm disabled, not lazy' as I knew that all they were seeing was a fat guy on a cart. My wheelchair is a very different means of getting around, it's a symbol of disability. My wheelchair makes my disability something real. The cart, didn't do the same thing in my mind.

Then suddenly I thought.

Whoa!!!

Whoa!!!

even

Whoa Nelly!!!

Why am I spending time that is supposed to be enjoyed worrying about the casual opinion of strangers. So what if they think I'm lazy, I know I'm not. So what if they have stereotypes of fat people, bald people, disabled people. So what. We have had very little time that's just 'fun' on this trip. Instead of concentrating on others, I began concentrating on driving the scooter. Doing a figure eight in a huge aisle, backing up without running over toddlers, going as fast as I could.

I've got to learn to stop giving people power they don't have.

I've got to learn to keep the power I do have.

BEEP!

Half the Story

We were somewhere in Pennsylvania on our way, about half way through a eight hour drive, when we decided to pull off for lunch. We chose to go to a Wegman's - which is a supermarket with a buffet style eaterie tucked off to the side. We've eaten at these before and knew that they always have something vegetarian on offer. We parked and got out. I had yet to replace the legs on the wheelchair so getting in was difficult, but I knew I had to keep my spirits up as my dark mood had almost cost Joe his day. I didn't want to be responsible for that - after all, as much as I wanted to punish someone, somewhere - and even though Joe was convienient, Joe didn't do it.

We made our way around what was on offer and found that they had a vegetarian chili. I got myself a large cup and decided to get a few roasted potatoes on the side. Joe caught my drift and put a few spuds for himself in one of the soup cups. When were were going through the check out the woman on the desk, looked at what we'd done and began to patiently explain that she would have to charge us for an extra soup because Joe had put some potatoes at the bottom of a soup cup. Soup cups were for soup. Sides were to be put on the plates provided. There was frustration in her voice as she informed us about our error.

A woman, who's back had been to us as she cleaned a table, turned around and said, "That's just a silly rule, you don't have to follow it." Annoyance grew in the cashiers face, she clearly didn't like being told what to do by someone with Down Syndrome. I said, "It kind of is a silly rule, isn't it?"

She let out a breath and said, "OK, I'll let it go this time, but only because you didn't know."

"There, that's nice," said the bus girl clapping her hands together.

On our way by, I stopped and thanked her for her intervention. She said, "My mom and dad, my parents, taught me that I had to follow all the big rules, the God rules, be nice, be honest, don't steal, don't hurt people. But all the others rules I get to think about. Dad says that people make rules for no particular reason."

"So you are a bit of a rebel then?" I said.

"That's me," she said grinning.

"I'll bet that your parents are going to regret teaching you that one day."

"They already have," she said, laughing. And moved on to another table.

There's a story I'd love to hear.

The Quala Tea of Mercy

I didn't know when I got up in the morning that I would find a place in Connecticut that would be able to replace my wheelchair legs. I woke, instead, to a world wherein the difficulties in getting around were beginning to multiply. I had aches in my hip muscles from trying to hold them up and move. I had been giving more and more ground away. 'No, I'll just stay here.' 'No, you go ahead, I wait in the car.' I didn't realize that I participated in about it all. It was hard to stay back.

But Joe insisted we start with a real breakfast, not a fast food creation. So we stopped at a Cracker Barrel, it was approaching 9 and we figured it would be busy. For those who don't know the chain, it's an 'ye ol'country' kind of restaurant. It has a store with homespun stuff on one side, and a restaurant that transports you to a simpler time in American history. I normally love the store because after a quick breakfast, I like to wander through it. I always find some little treasure to take home. Not this time, I decided, it's just to labourious to get around in a chair without footrests.

My mood had darkened again when we got to the table. A woman, slightly older than I, offered us coffee - the default American drink. I asked for a green tea. She told me that they had regular tea but none of the fancy. As I am a Tea Diva, I carry my own and asked if I could just have a cup of hot water. I pulled my tea out of my wheelchair bag and set it on the table.

When she brought the water, she told me that she had read in Reader's Digest that green tea was good for you. She went on to say that her daughter had been diagnosed with breast cancer and her doctor also recommended that she try switching from coffee to green tea. I asked if she had tried it. 'We don't even know where to buy it!' She was surprised to learn that you could get green tea in many flavours in any major grocery store, just go to the tea section.

I asked her for an extra napkin and she brought it a few minutes later. I pulled open the top of my can of green tea and pulled out several bags. I folded them in the napkin, and gave them to her. Her eyes quickly filled with tears and her mouth said, 'No, no, no, you don't have to do that."

I told her that I have a friend, right now battling cancer and that green tea has been part of her health regimine and she swears it's helped. I could not hear of a woman who wants to try tea to regain health - and not help. She smiled, big, and said thank you.

Before we left I took her hand, I never do this, and said - I hope your daughter gets better, I hope the tea makes a difference. She looked away from me blinking her eyes, keeping control, "Frankly, I don't know if the tea will help her, but I can say that your kindness helped me."

We did take time in the store to wander around. My clunky way of moving seemed to be less of an issue right now. My clunky way of thinking about the world seemed to be a little out of sync with the way the world is.

If one has the power to be kind to another, it doesn't matter quite so much how well or how poorly you move. If one has the power to give a moments comfort to someone in distress, one still has the ability to do what I believe we are here to do.

the ways of poverty (Blog Action Day)

It would be easy to write about the overwelming statistics about poverty and people with disabilities from simply the point of view of the massive un (and under) employment of people with disabilities. Every time I go to see a new specialist or have to fill out another form for another service the question of 'work' is approached from the assumption that I don't. At first I was annoyed at the presumption of unemployment but as I began to inform myself, I discovered that the vast majority of people with disabilities are in a perpetual state of dependance due to lack or work, lack of employers willing to adapt, lack of vision from the captains of industry.

Poverty comes in many forms. People with disabilities become quickly familiar with the poverty of opportunities. This is something that struck me from the moment I sat down in a wheelchair. The world was not designed for me, things were out of reach, things were up a step, it's hard to climb the ladder of success in a wheelchair. Though I already had a career, already experienced success, it would be foolish to pretend that my new status as a disabled person did not affect my income. Of course it did. I lecture. Many people do not want lecturers that sit, lecturers that require a ramp to a podium ... and I work in the field of disability. I end up, angry at my self, for feeling grateful for those who still hire me, for the audiences that still come, for the income I still generate.

Poverty wears many faces. The poverty of creativity is astonishing in a society that can photoshop beauty. Disability seems to stop people from thinking, it seems to be an end in itself. "Oh, you're disabled, poor thing, must be dreary sitting home alone pining for a real life." A stereotype of wan creatures wasting away fills the minds of many when they hear of disability. That stereotype leaves little room for thinking about adaptions and options, flexibility and creativity aren't considered in a search for solutions. We can see someone in a spacesuit floating outside a ship and imagine the view - yet we cannot imagine the view from a wheelchair. It took twenty minutes and willing to adapt my office to suit my needs as a wheelchair user. Most places have the twenty minutes, it's the willing that really matters.

Poverty has many guises. The poverty of empathy is crushing. People say, 'I understand' but they don't. People say, 'I get it' but they don't. People say, 'I'm with you' but they aren't. Outside a store, unable to get in because the aisles are crammed full, a clerk says, 'I understand this must be frustrating.' Really? REALLY? If there were understanding, a bit of empathy, then instead of wringing hands, there'd be a clear aisle. I think, perhaps the poverty of empathy comes from the constant expectations of gratitude. I'm supposed to be grateful for what little we've been given, don't ask for more, just stay calm and smiling - that's the way we are best seen. Tiny Tim succeeded by pulling pity from a hard heart - that's a road that many of us refuse to travel ever, ever, ever again.

Today bloggers all over the world are writing about poverty in a massive social action. When Susan Ludwig wrote me and sent me the link, I wasn't going to participate. I'd been struggling all week because of a mishap with my wheelchair, with the swift onset of inability because of that mishap. But then I realized that I'd become impoverished - not because of my disability - but because of the callous action of others. I realized that I'd been made poorer, not because of my disability, but because of the heartlessness of others. I realized that I had something to say about poverty.

Said simply, 'Poverty sucks ... do something about it.'

Dave's Very Bad Day

We got to the gate in Boise in plenty of time. We are always careful with time as, being a wheelchair user, things can more more slowly. Just before boarding we remembered that my wheelchair had not yet been tagged so we approached the gate and got the paperwork done and the tag dangled off the arm of my chair. Travelling by air isn't even slightly glamourous. It's cramped and uncomfortable, sweaty and frustrating. But it is, at least, quick.

We arrived in Buffalo on a plane that was jam packed full. We always wait until everyone else is off, I don't move quickly in the first place but I move even more slowly after having my legs squashed up against the seat in front of me. When I stepped off the plane onto the jetway I noticed my chair was not yet brought up. I asked the flight attendant about the chair and before he could answer the pilot said, "I'll go down and find out what's keeping it."

Seconds later he was back telling me that the chair was the first thing brought up, there was only one chair. At that point the Skycap guy sent to push me said, "They must have used that chair to take the other passenger down." I got very upset and said, "But that's my personal chair." The Sky cap guy said, "Well, it wasn't tagged." I assured him it was tagged. Thereby began a discussion between Skycap services and United Airlines about the chair and how it wasn't tagged. I said several times, "It was tagged," but no one heard me. It was like I was in a parallel universe where I could see them and hear them but they could not hear me. Finally, I screamed that we needed to stop talking and get down and get my chair back.

I was plunked into an extremely uncomfortable chair and we headed off in chase of my chair. The Skycap guy radioed ahead saying, "The chair you are using belongs to my customer, don't let go of it." When we got down the elevator he noticed something and ran out of the building. He walked back in with another Skycap and my wheelchair, almost. It turned out that another passenger claimed the chair was his and was taking off with my chair. They wrestled my chair out of the trunk of their car but had forgotten, as I was now hysterically pointing out, the footrests. They ran out again but the car was long gone.

We are sent over to baggage where I make a big fuss. I still have a week to go, travelling or lecturing every day, and my wheelchair is fine for sitting in but impossible to move in. I can't hold my legs up and push at the same time. In fact, I can't hold my legs up and have Joe push either. I don't have that kind of strength in my legs. I am trying to explain, without crying, that my mobility is now gone. I keep getting told to calm down. I keep explaining that they gave my legs away. They gave my movement away. They gave my mobility away.

Finally there was nothing to do but leave. They promised to pay for replacement feet but there was nothing they could do, or would do now. They wouldn't even look at airport wheelchairs to see if they had a set of matching legs. I was just to go away and stop being upset.

Immediately I got a sense of what the week was going to be like. The place where the van was to pick us up to take us to the hotel was at the far end of the airport. It was labourious and difficult to make it there. I had become disabled, crippled, unable. I cried publically for the first time in a very long time. The next few days have been difficult physically and emotionally. I now sit in the car rather than go in to rest stops or stores like I normally would. It's too hard to get around. It's too frustrating to not be able to move, to participate. I sit in the car and cry.

Who would steal a wheelchair from another person? Why wouldn't a skycap check a tag to see that the right person is in the chair? Why couldn't they understand what they had done to me?

We don't get back into Canada until late Thursday and we will order footrests immediately. But I have two more days of inability ahead of me. We had planned for a full day off tomorrow. We were going to go to a movie and to shopping. But now, I may end up just sitting in my hotel room, unable to get very far, unable to do very much. I know that part of this is because my spirit has been battered and maybe even permenantly damaged. I know that part of this is because of a deep depression that is settling around me.

"Wheelchair bound" ... that's what people say of me.

"Wheelchair liberated" ... is what I am.

Or rather, what I was.

Thanksgiving Day

We had a two hour lay over between flights, or so we thought. But after arriving and getting to the gate we discovered that our plane had been delayed another half an hour. We grabbed a bite to eat, Joe then parked me by the gate and then went for a stroll. I'm reading a huge trilogy and was eager to spend the time at the gate reading.

I looked up when they arrived and was startled. They were American soldiers in desert fatigues. But what they really seemed to be was boys in costume. They were so incredibly young. Really, really young. 4 days older than sperm. But then as I've gotten older, everyone else seems to get younger. My doctor is a toddler, my pharmacist, is, maybe, a teen. Even so, they had cheeks new to razors. One of them, a strawberry blond, glanced over and saw me. I smiled. He smiled back.

His friends all got up to go but he stayed behind. A few seconds later he approached and asked if he could sit down for a second. He had the manners of a Southern Gentleman. Joe's spot was free so I offered him a seat. My mind went to all the 'thank you for your service' kind of things to say, but they all sounded trite in my mind. So, instead I asked him where he was travelling to, he told me and we compared our travel days.

"What do you really want?" I asked. Not for nothing I took 6 years of psychology. He looked abashed. Looked away. My heart, siezed. This was big. I knew it. But I slowed my breathing. He looked back at me and told me that he wasn't scared of dying 'over there' but he was terrified of ending up ... ending up ... ending up ...

"Disabled?"

He nodded. "You want to know what it's like, really like."

Again, he nodded.

Then I talked. He'd asked for the truth, I told him the truth. I told him of the poll I'd done here on my blog, the one where I asked what was the greatest problem faced by people with disabilities. That 'attitudes of others' won hands down, even over environmental barriers and daily inconvieniences. I told him that I held a responsible position, I lectured internationally, I was loved. I even told him, a total stranger, that I still enjoyed physcial beauty and physical love. Believe it or not, I was embarrassed. I wasn't writing words on a white piece of paper. I was speaking to a flesh and blood person.

He asked me how long I'd been disabled and how long it took me to adapt. I answered all his questions. I told the unvarnished truth. He knew I was being honest.

Then he was honest, he said that all they guys say they'd rather be dead than disabled. That they didn't want to lose their vitality, their manhood and end up in a wheelchair. At that moment I noticed an older couple, she in a wheelchair, he in a walker, they nuzzled each other. I nodded towards them. He smiled again, more relaxed now, he got the point.

I could hear some raucous laughter in the distance. I knew his friends were coming back. I said, "Go back to your friends." He looked relieved and took off towards them. He stopped a couple feet away and turned and said, "thanks."

He was just a boy.

A frightened boy.

Who wants to do good.

We didn't talk about the war. We didn't talk politics. We just talked, two people. In an airport, with only a few minutes to connect, we did. I felt for him. I understand fear.

Today is Thanksgiving Day. I'm thinking about this guy. I'm thinking about my Dad and his time in the war. I'm thinking about those that made freedom possible. I'm thinking about how, when one is given the gift of freedom - it's important to use.

Every day.

Every single day.

HBTU

Today is Chewing the Fat's second anniversary. For two years I've written something pretty much every day. This is post number 743! I should be in a mood of celebration but I've had an extremely bad and extremely upsetting day. I'm going to write about it all. In gruesome detail, but I need a bit of distance from it all.

Instead, I just want to take the opportunity to say 'thanks' to all the regular readers, a special thanks to those who take time to comment. I can't tell you how important this little community has become to me. Chewing the Fat was begun as a means of documenting life as a newly disabled guy, as a way of putting on paper observations about what disability means - and what it doesn't mean. But it's become more than that to me, its become a way of connecting with others, a way of experiencing community.

While the Community Living movement tends to focus on the need to integrate and include those with disabilities in the larger community, I've always been of a mind to build and fortify the community of those with disabilities. I see the importance of integration and inclusion, of course I do. But I get frustrated at the denigration of the idea of a home community, of a place where disability is the norm. I get worried that in the rush away from 'segregated' activities, we end up with isolated people living isolated lives.

I want both. I want it all. I want to be able to find commonality with others who either have disabilities or who have disability in their lives. I want to be able to talk about what it is to face a world that thinks a ramp is a gift not a right. I want to be able to speak to parents who fight for a desk and a chair from schools who know best but who practice the worst. I want to have those moments of clarity that come from realizing a loss of aloneness. And I've found that here at Chewing the Fat.

So thanks for standing by CTF, for being part of this little community.

Happy Birthay to Us.

Let's Go Idaho

Yesterday in Boise, Idaho, I gave a keynote speech at a conference. There were 500 people sitting in their chairs as I was being introduced. I had that momentary 'flight' thought GET ME OUTTA HERE. But I knew from experience that it would pass. My topic was 'The 'R' word: Helping people with disabilities deal with teasing and bullying.' They were a warm audience and went with me from the get go.

I could see something happening, from my perch on the stage, as I spoke about the word 'Retard' and how it is the social equivilent of other hateful words. I talked about how it was I came to make the simple decision 'enough' ... really, enough. As I drew to a close, I knew that the talk had gone better than I could have anticipated. I could almost hear people all around the room decide, 'enough'. I looked up to see 500 people standing and applauding. That is a very nice compliment and I'm always moved by it - it happens rarely so it's always a bit of a surprise.

But as I sat at the book table and talked to Boise, I heard story after story. People telling me about being out with someone with a disability and being told, in one woman's situation, that 'he shouldn't be allowed out, he's unpleasant to look at'. She told me that she stood up to the bigot and that she ensured that from thence forward, he was prepared for what might come his way.

However, what got me the most, was the sheer honesty of those who spoke with me. Telling me that they use that word, that even though they work with people with disabilities, then never thought about what the word meant. Several were in tears as they said, pledged almost, to never say it again, to assure that people around them are made aware as well.

Each committment brings hope for a kinder world. Because if I stop it around me, and you stop it around you, and he stops it around him and she stops it around her. Then, one day, it will stop.

Look out Idaho, maybe you'll be the first state to let go of that hateful word, because there's 500 people ready to take on the space around them.

This is what it is to be in a movement.

This is what it takes to fight dispobia.

This is why I get on planes and fly to Boise.

A+

It started in Buffalo. I have come to dread flying as an 'assistance needing' guy. I find that the people that are hired to help me are often a source of stress than a source of assistance. First off, they always arrive pushing a wheelchair. It seems that most people who need assistance are those who simply can't walk long distances and therefore use an airport wheelchair. When they show up and I'm in my own chair, they are resentful. They have to leave their chair behind in order to push me. For some this is very difficult and they can be overtly angry about it. We've learned to counter by saying, why not have Joe put our carry on luggage in your chair and he'll push it. Others see my weight and don't want to have to push someone so large. We offer them the option of taking the luggage and Joe pushing me, but most often they take a huge sigh and the resentfully grab hold of the handles behind me to push.

I used to like travel move. I wonder about people who apply for the job of helping people and then get angry that people need help. I wonder, I do. But I'm looking backwards. In Buffalo, an older guy comes to help me. He greets me smiling. OK, that's odd, nice but odd. Then on the way he asks if I'd like to stop at the gift shop or the rest room. No one has ever offered me the opportunity to either shop or pee. I told him that I appreciated, really appreciated, the choice. He said that it only made sense to him, particularly when people got off planes. The bathrooms on planes are not famous for their accessibility after all. Nice guy, great attitude, good flight.

Arriving in Boise there the person who was supposed to pick me up, didn't show. Joe and I decided to make a go of it on our own. We stopped in a gift shop for some post cards and were spotted by a young, quite heavy, guy. He asked if we were the ones who had called for assistance. We told him we were. He waited with us as Joe made the purchases and then on we went. He asked a few questions and the organized our time. We got the rental car first, because the luggage was on the way to car pick up. Then we got luggage, for which he scoped out and found a cart for the suitcases. Finally he took us right out to the car. I am usually dumped with the luggage, no one has ever taken us right out to the car before.

I felt like the Disability Spirits were watching over me on this trip. Reminding me that it is possible to give support without giving attititude. Reminding me that it was possible to have an interaction that leaves both feeling enriched. A great way to start a couple days of lecturing.

Thanks guys - positive support begins with positive attitudes.

Just A Note:

I apologize for the very, very, brief post. I lectured yesterday in Syracuse and drove back to Buffalo. I have to be at the airport tomorrow at 4:30AM. Needless to say I am frazzled. I'm looking forward to my trip to Boise as it's in Idaho, one of the two states I have not presented in. Counting down the states!

I did get a couple of emails yesterday from people who didn't like my post yesterday and said that I should stick to only positive and uplifting posts about families. That families have it hard enough. That I didn't have a kid with a disability so I could never know.

OK, I get some of that. But I think there is room for us to discuss what we see and what could go wrong in support. Heaven knows I've taken on the support I've seen in the community from those paid to care.

Even if I mis-read the reality of a situation, at least what I've seen is enough to give me grist for the blog mill. I don't see parents of kids with disabilities as being so fragile that there can't be discussion of parenting approaches. I think if you read this blog regularly I point out a lot of good parenting, a lot of wonderful family stories.

But they aren't all wonderful. What I saw in the rest stop was disturbing and I wanted to talk about it.

So, I know these blogs will be less popular but if I wrote only for 'popularity' I'd be a bore. So, thanks for the comments. Also, the notes I received were all very positive, no name calling, no accusations, no nastiness ... just disagreement. Thank you. I appreciate your point, I appreciate even more how you all expressed it.

Next post from Boise!

If I Might Say ...

The world was not rent asunder. There was not a crack in the space time continuum. More importantly, Joe survived. As I've written here before, Joe has a 'get in the car and go until goal' approach to driving. Me, I'd like to stop every now and then to see roadside attractions. We are often a bit at odds when on a longish trip. But I announced to Joe on the way through Buffalo on our way to Syracruse that we would be stopping for lunch at Fuddruckers. They have an amazing swiss mushroom veggie burger, I was determined to get out of the car and actually eat at a table. Joe was surprisingly flexible and agreed that, since it was a short drive, we could stop.

After ordering the food, I spotted only one table that would be comfortable to sit at in the wheelchair. It was vacant, so I headed over to the spot to grab it. Ensconced at my place, I took my wheelchair gloves off, set them on the table and then began to look around the restaurant. My eyes finally setted on a family, obviously not one of great means, sitting several tables away. Mother and daughter sat with their backs to me. Father sat facing me.

The daughter seemed to be engrossed in eating her burger, her back was to me, but even then I could see she was not part of the conversation between her parents. It's hard to guess ages from the back but from her height, she'd have had to been in her late teen years. But something was going on. Mother, beside her was constantly touching her, stroking her, twirling her hair, rubbing her back. A constant flow of touch. I can imagine a teen putting up with that for a short while and then becoming irritated. Being irritated is part of the job of a teenager. I swear to heavens, the thought formed in my head before I even saw her face, "I'll bet she has Down Syndrome."

And, when she got up, I saw that she did. There had been something about the touch which was not quite right, not quite natural, for a typical teen. But worse, when mom took a step away, her daughter cried out as if hurt and then dove towards her. She put her mothers arm around her and snuggled her face into her mothers chest. Mother, looking tired, held her briefly. They walked out of the restaurant with her wrapped around her mother.

Because of my reputation as an 'anti touch' guy (which isn't true) formed through my 'Ethics of Touch' training programme; many will already know my thoughts. I think touch is a wonderful thing, it can represent love, affection (yes and lust), it can show concern and caring, it can communicate sorrow shared and compassion offered. It can do a multitude of good things. But it can also do bad things. I don't need to list those.

In this situation it seemed like a young teen with Down Syndrome hadn't experienced the subtle changes that happen in touch between parent and child as they grow. She was stuck at touch for the age of two. It may have served a purpose at one time to reassure her, but now she seemed addicted to it. But it made her less. It made her child like and childish.

Of course I want parents to love their children, hug and hold their children. But I also want parents to recognize that their children are growing up. That their relationship needs to grow and change. That the touch they get them used to now, will be the touch they expect from others later.

Please be aware that your child with a disability needs their relationship with you to grow and change as they get older. They are only an eternal children if parented to be one.

Expectations of your child are vital.

Expectations of yourself, well, now - that's where great parenting begins.

Saintly

She said it like she had said it a thousand times before. A line delivered with such practiced ease. Mother and daughter collapsed in laughter at a routine that clearly hadn't grown old. Let me put you in the picture.

I stopped at the huge Indigo bookstore a block from where I live to see if they had the first in the Bone series of graphic novels. I had picked up other such novels in the past and we headed over to where they were shelved. The clerk working that area told us, upon request, that these particular novels were down in the children's section. We took the elevator down and began wandering the aisles looking for the book. I like looking at children's books, seeing what's current for the toddlers among us.

Over in the teen section was a mother and a daughter team. Mom had a couple books tucked under her arm and her daughter was shopping for something to read. Nothing surprising here except her daughter was a teen with Down Syndrome. They were clearly having a nice time together and were chatting as they shopped. The person I did really notice was an older woman who seemed almost to be stalking them. She was a clever old fox because she'd learned to stare out of the corner of her eye. She probably thought she was being subtle, but she really wasn't. She was like a soldier wearing camoflage in a kitchen.

Mother noticed too, or must have, because she turned to the older woman and said, "Lovely day, isn't it?" The ice being broken the elderly woman turned on the sympathy taps. She went on and on about how lovely it was to see her with her daughter. That it must be such a trial. That her heart must have been broken. That she must be such a saint. There was little time for reaction or to say anything because the dam had burst and prejudices and preconceptions flowed out freely.

Daughter came over and caught the last part of the conversation, she'd heard it all before too, without pause she interjected, "I'm not special, she's no saint." The older woman didn't quite catch what she said, so she stopped her pity prattle and said, "Pardon?"

"I'M. NOT. SPECIAL. SHE'S. NO. SAINT." The words were clearly enunciated. There was a brittle pause, then a glance between the two of them led to helpless laughter. The elderly woman shook her head and walked away muttering. People don't like it when you turn down pity.

I found the graphic novel and began pushing myself back to the elevator. Mom caught me eye, I said, "Well, I'm special."

Now we all laughed.

Canada Votes

Yesterday we went to vote. We will not be home on the day of Canada's national election, so we headed dutifully off to the advance poll. Neither of us has ever missed voting in an election, we both love to complain about the government - so voting is a must. We talked several times about how we were going to vote, typically we vote for the same party election after election, but this year we figured to change up. We have, on occasion, disagreed and each voted differently, but typically we form the mighty hingsburger/jobes voting block.

We were second and third in line and we there minutes before the poll opened. By the time we got in and registered the small waiting vestibule was full. Jam packed full. Of people with disabilities. There was an older woman in a huge and mighty electric wheelchair, a young Chinese woman in a sporty manual, a whiny older guy who constantly said in a high pitched voice 'I have a heart condition' to any and sunder. Then there was the guy with cerebral palsy who nearly toppled over the crutch of a young guy in a cast.

I was trying to make it around the cramped area while the Elections Officer tried to retain composure when in fact he seemed to be, pardon me, freaking out. Everyone was orderly, everyone was quietly waiting their turn, but our very presence, in such large numbers, threw everyone off their game. The woman who first checked our identification kept glancing from me to the hordes of disabled folk sitting, standing, bobbing, weaving, whirring behind me. Like I was the first in the deluge of disability. She kept trying to get the Election Officer's eye to indicate to him that we were all there. She kept pointing to us all with a quick movement of her head. She looked like she had a tic.

When I turned to leave, he said to me, "I don't know how you'll get out!" as he looked at the seething mass of mobility aids in front of me. I assured him there would be no problem. As I pushed myself out, everyone quietly and efficiently moved creating a passageway.

See, we know how to be disabled, even if they don't know how to handle it.

The Message

When we got home last night, came in through the door, it felt wonderful. It was just plain nice being home for a few days. We have dived into lecture season and are going to be all over the map the next few weeks. Still, there is something about being home. Having a place to snuggle into. A safe place.

Being a lecturer, writing a blog, doing the kinds of things that I do, puts me constantly into an odd relationship with others. Someone once mentioned to me that being a trainer is the only job where you get evaluated every day you go to work. And that's true, being that public means that others get to judge you, make comments about your work, your style, and often even your looks. I'll never forget the 'he shouldn't be allowed to present until he loses some weight' or the 'he has ugly feet' or the 'if he had any self esteem at all he'd be embarrassed to be seen publically'. These things do stay in one's head - even if pushed aside. There are thousands of positive comments - but being human, who remembers those?

So, getting home is always nice. It feels like a safe haven. Or it did. I picked up the phone and it had a beeping dial tone that indicated messages in the voicemail box. I grabbed a pen and then plugged in the password. Was told that I had entered the wrong password, remembered that I'd changed the password, reentered the new one. There was only one message.

My heart leapt to my throat as the machine told me that the message had been marked urgent. I've never had that before and was worried about being away and having an emergency call. Then a harsh voice came on leaving a vulgar, threatening message. With a trembling finger I saved the message for Joe to listen too. Joe listened and said, 'I'm erasing this.' And the message was gone.

We had decided to have a listed number here in Toronto after years of having an unlisted number. Because of a couple of controversial things I've done over the years, threatening calls became fairly commonplace. But I haven't had one for a long while, I haven't had one here.

Suddenly I felt more vulnerable. I felt frightened. I don't understand people's need to reach out and slap someone. I don't understand people who will make nasty personal comments about a speaker. I don't understand people who will pick up the phone and leave a threatening message. If you don't like me, my message, or my style. Don't attend my lecture. Don't read my blog.

I'm fairly easy to avoid.

After a long talk, we've decided to change nothing. I have to say what I have to say. Joe supports it all. So we're here to stay, until God moves us along.

So, since I can't call you back ... you didn't leave a name or number. If your purpose was to scare me. You did. If your purpose was to shut me up ... you didn't.

Table Manners

When going through my pictures yesterday to find my jellyfish photographs, I came across this photograph. I took it during a break in my lecture in Michigan some weeks back. I could see people in my audience looking at me like I'd lost my marbles when I cleared off my notes in order to take a snapshot of the corner of my lecture desk. But I didn't care. In fact, I thought that their confusion was an indicator of the difference that I now find between those with and those without disabilities.

Before life in a wheelchair I would occasionally notice access issues. Particularly in latter years as I found ramps easier to negotiate than stairs. But still access to me was more of an abstract concept than a day to day reality. Now I'm faced with issues of access constantly. Right now I'm in a hotel room, purporting to be accessible because it has a low peephole in the door but does not have bars around the toilet. Yesterday I faced a ramp that only a teenager on a skateboard would dare attempt. The day before, I tried to get through a door that opened with a disability button but wasn't wide enough for a wheelchair.

Access matters.

Then here I was in a lecture hall and they brought out this table for me to use to present from. It was made specifically for those who sit to present, someone realized, that we are all at different heights, someone else realized that having a handle to raise and lower the table would be cool, then finally someone thought about putting the handle in a place that was easily accessible. The end result was the perfect accessible table - and I got to use it.

So those in my audience that thought I was crazy to take a photo of the corner of a table didn't see what I saw.

The sheer physical beauty of accessibility.

Jelly Fish

We almost didn't go. Both of us were tired from the lectures and the travel and we have, in recent years, developed the courage to be in a city without the need to be a tourist. We have even, for example, layed in a hotel room in New York and read newspapers and books. But we both felt like doing something and we'd been to the aquarium a few years ago and enjoyed it. It seemed relatively low impact so we checked the website to see if it was accessible and finding that it was, we went. Don't let anyone ever kid you about the fact that disabled parking is the best thing about having a disability. It absolutely is. We arrived a bit later in the day and there were cars everywhere. But a beautiful parking space awaited us. We pulled in to the glares of others ... until they saw the wheelchair ... it seems everyone mistrusts blue badge holders. On arrival, we were told that we could get a disability discount if I had something that proved I was disabled. I looked at the guy and asked, 'The wheelchair doesn't do it?' Apparently not. I pulled out my WheelTrans card and WHAMO suddenly the chair mattered and we were in with the discount.
The building is fairly accessible but there are spaces where it's difficult to get close to an exhibit because of how it was displayed. Both of us enjoyed both the beauty of what we were seeing and the sense of experiencing it with so many others. Because the floor was wheelchair friendly, I could wheel myself from tank to tank and Joe could wander off and check things out himself. We've always been like this at exhibits, come together, part, come together. I rounded the corner and saw the tanks full of jellyfish. I have always found them stunning and mesmerizing to watch. I pulled up and parked just off to the side of the tank. I didn't want to block the view of others. After several minutes of watching these creatures, who seem to exist and not exist at the same time. I felt that creepy feeling you get when you think you are being watched. I glanced around and saw a young couple staring, not at the fish but me. OK, that happens, but shit, it's my day off. I went back to watching the tank.
Then I heard one of them say to the other, "It's wonderful that he can take pleasure in such simple things." Suddenly, anger flared up in me and a nasty comeback began to form in my mind. Then, I realized, that it was true. I do take pleasure in simple things. I'm a lonely-hearts ad waiting to be written "takes joy in the simple pleasures of living". I just didn't like it being related to my having a disability, to my being child like or childish. But my attention was drawn back by a quick movement in the tank. They disappeared from my notice - because simple things are beautiful. Including patience and tolerance.

Choices Indeed

He approached me with seriousness, handed me a flyer and began to walk away. I asked him to wait for a second while I looked at the paper he'd handed me. It was a flyer for the 'Choices for Down Syndrome Society' and on the inside flap the mission statement 'To allow people with Down syndrome to have the right to make their own choices in their qualityof life' was written by David Ash, a self advocate. I took a guess, "Would you be David Ash?"

He told me that he was and that he was there handing out flyers because he wants to establish a large network in the north of self advocates with Down Syndrome. He was a lively and personable guy so we chatted for a few minutes during the break in the lecture day. He told me that he thought it was really important for self advocates with Down syndrome to find their voice and to speak for themselves. He saw the importance of parents and others speaking up but he felt it was particularly important for those with Down Syndrome to tell the world that it was OK to have Down Syndrome and, gasp, that it was OK to be born that way.

Then we moved on to the thorny issue of abortion and he was fully apprised, fully aware that abortion is seen as the 'cure' for Down Syndrome. He said that it was important for people with Down Syndrome to speak up. To discover and use their voice. It was like talking to a holocaust survivor during the holocaust. I have spoken often with many self advocates about issues regarding oppression and stereotyping but this was my first experience in talking, so openly, with someone who's birth right is in question.

I was deeply impressed by his maturity in being able to recognize that others, maybe even most others, think he should have been done away with ... and to still be sane, still be happy. I asked him if he would like a few minutes at the microphone to talk about his organization and his dream for a powerful group of self advocates with Down Syndrome speaking to dramatic and powerful issues. He said that he would like that opportunity. We took a picture together and then it was time to go on with the day, he spoke to a group of nearly 200, who had come from all over northern B.C. - he spoke briefly but well. He left some flyers for people to look at and then he headed out the door. I watched him as he left, full of dignity and pride, full of a mission and a purpose.

Full of a life, well lived.