Chris Goes To The Mall

Big hair, bigger smile, I think that's how I remember my first sight of Chris. I was going to be presenting at 5 Oaks, a United Church camp, where K-W Hab was having their annual staff retreat/conference. I walked into a smaller room to set up my notes and prepare and Chris was came in the room to welcome me and within seconds she was sitting down and we were chatting. I started coming to the K-W conference to try out new lecture material and to keep in touch with a gang that I really came to care about.

As we both work in the same field and in the same province, without question we would run into each other regularly. It was always a pleasure. We discovered we had things in common and both had a shared vision of what it meant to provide good care. Last time I saw Chris she, like me, was using a wheelchair. She and a gang from K-W had come to hear Dick Sobsey present and Chris didn't want to miss it even though she was recovering from knee surgery.

We ended up chatting yesterday on the telephone and I was asking Chris if her experience of being in a wheel chair had changed how she saw disability. She said that she primarily uses a walker and she has indeed encountered situations regularly that made her realize the importance of dignity when interatcting with another. Then, serious stuff done, we switched to funny experiences in world of disability.

Chris told me that she was walking from car to store in a mall and had stepped down wrong on her knee. She was in a lot of pain and she knew she had to move more slowly and more carefully than ever before. As she started towards the store she noted a man stopping and holding the door for her. She knew that the walk was going to take some time so she said, "That's OK, don't bother holding the door."

"He wouldn't leave," she said.

"I had to try and speed up because it was going to take forever and I didn't want him standing there. I didn't want to hold him up. I kept looking up and saying 'Really, it's ok' but he wouldn't leave. Sweat is rolling down my back as I'm trying to get to the damn door, I don't know how many times I said, 'Please, go ahead' but he wouldn't leave. Now I'm really pushing myself and my knee hurts and I'm thinking unkind thoughts about that guy at the door, why is he doing this to me, why is he forcing me to rush, why doesn't he leave me alone, then I'd look up and say, 'Honestly, it's alright, go ahead, I'll be OK,' but he doesn't leave the door. I push myself harder, my knee is hurting, I keep looking up, he smiles, he doesn't get it, he doesn't leave. Finally, after what seems like hours, I get to the door and I get up the small step and inside. 'It's over,' I think to myself and then I look up and there he is at the inside door holding it open, blocking other people while I make my way over to him all I could think was ... Why wouldn't he leave me alone!"

Such is what disabled people often think when you think we're thinking, 'Oh how kind!"

***

Note to Chris: You asked me on the phone where I get my ideas for my blog ... well today the answer is ... from you. Ha! Ha! Bet seeing this here surprised you!

Poison Pen

It started a few days ago. Joe and I had been getting complaints from people about how hard it was to track me down for consultations and lectures. I don't have a web page other than this one and for years just relied on word of mouth. But the complaints have become more frequent so we decided to put our business email address in the 'my profile' section of Blogger and direct inquiries to us that way. It seemed subtle and quite accessible. In fact we've recieved several 'finally tracked you down through your blog' kind of emails. A couple of old friends have done the same, it's been nice.

But, I'm now getting email, once or twice a day, every day, from someone who really, really doesn't like me. I picture my phantom emailer as male, Joe pictures a woman. Either way, I'm now getting 'who do you think you are' kind of emails. I want to respond by saying, 'I'm someone important enough for you to waste time writing to ...' but haven't said it until now.

The thing is, my anonymous penpal, has horrible spelling. I shouldn't comment on this becase spelling isn't a strong suit for me either as a result I have a dictionary that sits beside me and Joe is usually only a holler away, so I get by. Even so, my spelling ain't great, but these emails have spelling that's right odd.

Today, for example, the email intended to say, I think, that I was a 'deluded person' but instead my chere correspondant wrote that I was a 'diluted person.' This struck me as suddenly very funny. I laugh at the oddest things. But right then, that combination of words seemed both so odd and so profound at the same time.

I would guess that I am, indeed, deluded much of the time. I think we all are. I think we get through our days by convincing ourselves that the world is not tottering on the edge, that good will defeat evil, that what goes around comes around ... I even manage to delude myself into thinking that sometimes it matters that I'm here and doing what I'm doing. I thank that's called, Affirmation.

But I think my ghost writer is also right ... I am a diluted person. Partly because I don't think the world could take me full strength, but also partly because I do find that the stresses and strains of just getting through the days has me diluting my principles, watering down my ideas and disolving my convictions. I try so hard for that to NOT happen. But it does, in little ways and in big ways, it happens.

Part of the reason I pray is to regain ground that I've given up. To grab hold again the things that matter, the things that I believe. To recalibrate my vision to ensure that I'm locked on the right goal, not the expedient one. So, my faithful fan, you're right. I do delude myself. I do let my ideals become diluted. I forgive myself the former and fight against the latter.

And thank you. Really. Thank you. For reminding me to hold fast. To pray more often.

Though somehow, I don't think that this was your intent.

Shopping

Yesterday I saw something.

After work Joe picked me up and we went grocery shopping to pick up stuff to make Vegetarian Sloppy Joes. I welcomed the opportunity to get out and move around a bit after being in a confined space all day for meetings. We decided to take a drive to one of the bigger grocery stores rather than to just go to our local spot.

On the way to the store I saw something.

A guy, about twenty five, who works at the grocery store pushing buggies and packing bags was walking home. I first noticed this guy the first day we moved to the area five years ago. He's one of the reason's we'll go out of our way to shop at the store. If they hire people with disabilities, they get my business. I became used to seeing him there as part of the store. I've never seen him anywhere else. I remember being a kid and thinking that the post office guy lived there because I never saw him anywhere else. So somehow in my mind, this guy existed at the store, but nowhere else in the world. In some areas of my life I grow but I don't learn.

So here he was walking home, obviously after work. He was holding his work apron bundled up in one hand. He was just chatting with one of the tellers from the store. I don't know what they were talking about but it had that aura that people get around them when they are gossiping about others at work.

We were parked at a light and they were on the corner. Again, I do it. I assume. The co-worker is either a friend or a family member. The guy with a disability is being walked home after work. Great to see them out in the community. Great to see him doing so well. Then the pedestrian light changed and the kid (under 40 is kid) said goodbye to the woman he'd been walking with and turned and walked in front of our car. He glanced over and recognized us as customers and waved. We waved back.

She turned and walked the other way. She hadn't been walking him home. They'd been walking together. Chatting. Being sociable. That's all.

When I first started in this field and was looking for work. There were precious few jobs in the community. I started work in an institution because the only people who might have imagined a future of community living and integration would have been Nostrodamus or Agnes Nutter, witch. It was beyond comprehension that people with disabilities could live in a world 'out there' instead of safely 'in here.' I believed that we were protecting from rather than stopping from.

The miracle of our movement is that we believed in people with disability. The reality is they didn't need our belief as much as they needed opportunity.

"Did you see that?" I asked Joe.

"Yes," he answered.

A sight for eyes that had been sorely wrong.

Affirmation

We stared at each other with disbelief.

"I think she has a better vocabulary than I do," said my co-therapist.

We were doing a day of meeting people who had been referred for service and as such there had been a line up in the waiting room all day. We tried really hard to stay on schedule and had managed pretty well. But the interview we had just done had run over a bit. We had met someone extraordinary.

She had Down Syndrome and a history of making up stories that ended in police involvement and investigations. It was serious stuff and she was a serious person. She had sat in the waiting room reading "O" the magazine put out by Oprah. We had been told that she was very, very, very, bright and that she read voraciously and was addicted to Dr. Phil. She came in with a sense of the importance of the meeting and a complete understanding of her own behaviour.

Did she know that what she was doing was wrong?

Yes.

How did she feel about the resulting furor and mess created by her telling tales?

Sorry.

With one word answers it was difficult to see the woman we had been told about. Very bright, very intuitive, very alert and aware. I took a shot.

"Is it attention that you want?"

"Noooo," she said drawing out the word so she could think, "not attention exactly."

"What exactly, then?"

"I think, affirmation."

"Affirmation, you mean like love?"

"Love," she began, "and affirmation aren't the same thing. You asked me about attention. I get a lot of attention, I'm very involved in the community. I get a lot of love too, from my family in particular. I think what need is affirmation."

"Affirmation?" we were both a little thrown by what she had said.

"Yes, affirmation," she said and raised her hands and lowered them to demonstrate a stream pouring down onto and into her, "you know, messages that I matter. Right now I need those messages from ..." she paused and pointed around, "out there. Because I don't feel them inside. Inside I believe I'm a mistake."

"Oh," we both looked at each other then back at her.

"So we need to help you with self esteem?" It's a good guess.

"No," she seemed frustrated, "with affirmation."

"OK."

When she left the room we had entirely forgotten that she had Down Syndrome, she was a woman who knew who she was and what she needed. She had gone on to say that she wanted to find positive ways to feel affirmed, but that she didn't know how. I admitted to her that I didn't really know how either, but that it would be an interesting journey. She agreed that it would.

I've spent the rest of the day thinking about her and her need for 'affirmation' and she is right, affirmation is not attention and it is not love. It's something much different. It's something we all seek at a deep level. It's something that many learn to live without. It's something that's she's unwilling to give up without a fight.

Affirmation.

"Messages that I matter. That I'm not a cosmic mistake." It's not a lot to ask for.

But it's a hell of a lot to get.

Incapacity

On Sunday we called a friend that we hadn't spoken too for awhile. We'd begun our relationship as work mates but it had transcended over time into a friendship. I think it was the night in the bar in Newcastle Upon Tyne that did it. We had loads to catch up on, losts of gossip to swap. Then, as it always did, the converstation moved on to the health and whereabouts of another mutual friend.

"He was doing well there for awhile but he keeps losing his battle with cocaine and he absolutely refuses to go into rehab."

"I feel sorry," I said, "Mostly for his family, but also for him. If it's possible to feels sorry for a stupid jerk."

We moved on to other converstations, away from pain, my upcoming lecture trip to the UK, some of the gigs I'd be doing, getting together at Paddy's Goose. That kind of stuff. When we hung up, it felt nice managing to keep in touch and maintain a friendship across the miles.

Our mutual friend though. Who probably needed my call more than ever. I couldn't do it. Not today, a Sunday. But then realizing my selfishness, I called, got voicemail. He's on another tear.

Oddly he had reacted the worst when I first landed in the wheelchair. His pity for me washed over me like an unwelcome wave at a water park. It seemed, though, that he was almost enjoying my disability. As if it had happened to him, not me. "Oh, poor me, my friend is in a wheelchair, why does everything happen to me."

But that's egocentricity for you. He once blamed me and my disability for a drug binge that lasted nearly a week.

After a short spurt of sobriety, he's back on the drugs. Disappearing for days no one knowing if he's alive or dead.

Put us two beside each other. Me, in the wheelchair. Him, freestanding on two feet. Me, slowly pushing myself to my destination. Him, quickly running to wherever he chooses to go. I'm sure that people would see me as the one with the 'problem'.

They'd be wrong.

Way wrong.

Incapacity has nothing to do with disability.

Right now he's incapable of getting through the day.

I'm incapable of getting through to him.

It is only in these moments that I feel, ultimately, disabled.

Chairman

It's a part of Toronto that we rarely go. Neither of us likes it much and neither of us feels as if we fit in. It's where the rich gather to shop and eat and stroll along the sidewalk. We went there on my inspiration. There's a new store there that we both like and I'd see an ad on the internet for something I wanted to pick up that was exclusive to that chain. So we went for a Saturday adventure.

I've only been there once since I've been in a wheelchair and we ended up having to dump me on the sidewalk before Joe parked because the parkade does not have an elevator and it would have been very difficult to manage the huge ramps. That's OK, I love people watching, so as Joe parked I pushed myself off to the side and then simply waited.

We shopped, we wandered a bit and then it was time to go home. I told Joe to head on down to get the car and I'd push myself on several meters to where it looked safe for him to pull over and get me loaded back into the car. It felt like a leisurely day so I just slowly pushed myself along. I wouldn't say that the glances at me were hostile but they weren't very nice. I felt like a charity case that had crashed a charity ball. You know the idea of us is one thing but the reality of us is another.

I guess I felt in the way. Intruding. At one point it got a little crowded and I had to slow down. I heard a kind of harrumph behind me and, it upsets me even as I write this, a guy much younger, much thinner and much richer than I, took hold of the grips on my wheelchair and started to push me. Without a by your leave or anything, he just started to push me. At first I panicked, I didn't know what was happening. Then when I realized, I grabbed hold of my wheels to break my movement.

I turned to him, angrily, I wish now I'd said, "Unhand me you cad!" but I didn't I said, less poetically, "Hey, let go of me!!!" He just kept trying to push me hard. I held hard on to my wheels. "You're in everyone's way, I'm just helping you."

"LET GO OF ME!!!"

He knew I was serious and now people were staring. He at least had the good grace to blush. "Don't you touch me again,"I said defiantly.

"I did not (he didn't contract his words) touch you," he was defensive and angry.

"Touching my chair is touching me."

"That is (really he didn't contract his words) just silly. I would think you would be grateful for the assistance."

"Well, I'm not! Don't ever do that to someone in a chair. It's assault."

By the time Joe got there with the car I was where I'd planned, but I was still quite angered by the intrusion into my space.

It was only later that the idea of being 'in the way' was also offensive but I'd had enough of offense by then and had to get on with my day.

Consider me Chairman Dave, don't touch without permission. Don't help without asking. Do that and we'll get along fine.

Compliment.

"Dad," the kid was talking in kid whisper. You know it, the voice that can be heard throughout the store. He was one of the cutest kids I'd ever seen. Part of that was because of the wheelchair. It was tiny. Toylike. It had been jazzed up. A friend of mine had said that I needed to get some stickers for my chair then suggested that we get a group together to "Pimp Dave's Chair". Well, I hesitate to say it - the kid's ride had been pimped. It struck me that I see very few small children in wheelchairs out and about in the community - but no matter he was here, now, with his Dad.

"Dad," he said more insistently. Dad broke from what he was doing and leaned down and said, "What's up kiddo?"

Now, I love the word "kiddo" I use it all the time with people I care about. It's a real term of endearment to me, it's informal, it bespeaks closeness, it's kind of fun. It's a great word. I never ever hear other people use it though I know that others must. It telegraphed to me a lot about the relationship between father and son.

Perhaps now you are thinking that I'm lurking around watching pere et fils but I'm not. I'm parked beside a tower of green peppers and I'm selecting them. This is an important part of cooking. Joe can't pick a green pepper properly because he's not the slicer-dicer, I am. You only have to chop a few green peppers to know that there's a certain shape which lends itself to good cutting. I'm serious about picking my peck of peppers when they come into the grocery store produce section and start going through the brussel sprouts. So we are in the same space at the same time.

The boy looks over at me and points. His dad's eyes slide over to me then back to his son. "What?" he asks.

I am curious too.

"Am I going to, am I going to ..." the kid pauses.

"What, go ahead ..." Dad encourages.

"Am I going to swell up like that?" the kid finishes. Dad looks at him mortified, knowing that he's spoken loud enough for me to hear.

I'm besotted with giggles. I think it's really, really, really funny. Then I cave in and start to laugh. This brings Joe back quickly. I'm not a laugher. I'm a smiler but not a laugher. I can't even tell Joe what the kid said.

Father looks at me and says, "Sorry."

I said, gulping for air, "No need, that was funny."

Then I looked at the kid and said, "I grew up to be me, you will grow up to be you. Because we are in wheelchairs doesn't mean we become each other."

He looked relieved.

Then for a few mintues we all just chatted. The kid wants to be a scientist, he said, because he likes to make things explode. Dad tells a funny story about a firecraker in a pumpkin pie and a really upset mother. We all laugh again. Then, converstation done, I return to picking peppers, they return to getting brussel sprouts.

I roll by and say goodbye to the kid.

I hear father say, loud enough for me to hear, "You could do worse than growing up to be like him."

Nicest thing anyone has ever said about me.

Bar none.

Hope

It's Friday morning of a tough week. I dragged myself out of bed this morning, plopped myself down in front of the computer and called up blogger. I've been here for almost 10 minutes staring out the window. There's something wrong with having to go to work every day. There's something wrong with having to paste on a smile and earning my daily multigrain, low-fat, high fiber bread. Normally, when things are like this I reach down into the slop pail I keep behind my heart and pull out some hope. Give me a second ... OK ... here's what I dragged out today.

1) I hope that it will make just a tiny bit of difference in the grand scheme of things that I go into the office today - I'm meeting with the abuse prevention team, the self advocacy team and the relationship training team. So I suspect it might.

2) I hope that that guy with Down Syndrome with the huge grin will be there when I get in in the morning. He never says 'hi' but he waves and his eyes twinkle and there's something about him I really like.

3) I hope that I can avoid stepping in political shit for a whole day, working with people with disabilities is fun and rewarding, working with people who work with people with disabilities is fraught with danger.

4) I hope that on the drive down there Joe doesn't say, "Did I tell you about ..." because after 38 years, he has.

5) I hope that when we leave work and go shopping, I go the whole day without hearing the word 'r*tard' even once.

6) I hope that the woman at Tim Horton's who looks like her face could turn you to stone, cracks today and smiles. We've had a contest for over a year about who could make her smile. I hope I win and I hope her faces cracks but does not break.

7) I hope that I get a chance on the way home to get out of the car and practice more with my new wheelchair. I sit a little differently in it and I'm still learning the best push strokes. I'm thinking of excuses to go shopping.

8) I hope that our neighbour, the kind of weird one, isn't out front staring at us disapprovingly as we leave like she does most mornings.

9) I hope I have time for one silly internet search today. Like yesterday I tried to find the words for the song 'up on cripple creek' ... because that's where I was yesterday.

10) I hope I manage to be nice most of the time, thoughtful come of the time and kind all the time.

OK, I've put the pail back and now it's time to haul butt into the shower, into clothing, into car and go. Here's an eleventh ... one just for you ...

11) I hope that you have a day filled with hope too ...

So There

A few months ago I wrote about getting a new wheelchair. I did but it didn't fit me properly. I know what you are thinking. You're picturing my big bottom squished into a tiny chair. No sir, the problem was that the chair was too big. It was huge. Like a couch with wheels. It wouldn't fit through any door anywhere. Odd thing was, they didn't want it back. I think they were just really pleased to get rid of it. So I use it here as a comfy chair to sit in, it's perfect for getting around the kitchen when I'm cooking because it's so high. But I really needed another chair.

I know, I know, I know I'm fat. But let me tell you shopping for a chair when you weigh more than Barbie isn't fun. I almost gave up when we went to a wheelchair store here in Barrie and the woman kept going on, loudly, about my weight. Not a person in the store couldn't hear her. There I was sitting in my chair, wheeling myself around, and she was gumming on and on about my weight. I told her that I just wanted a chair that was similar to the one that I was in and that would be fine. Clearly my weight didn't stop me from using a chair. I'd sign a waiver if necessary releasing them from any warranty that came with the chair. Not good enough, she called the manager who came over and asked me to tell him my 'exact weight please'. I told him that I just wanted to buy a chair. Several others shopping in the store came over to listen to the discussion about my weight and perhaps hear how much the fat boy weighed. We left. I discover over and over again that I have no personal privacy, or dignity, or boundaries when recieving service from those in the disability industry. I assert boundaries and demand privacy and I'm treated like a truculent child.

So, forget people, I went searching on the net for the perfect chair. Oh and I found it. Exactly what I needed. I talked with the Canadian distributer and everything looked good. They couldn't sell it to me direct, so they gave me the names of people, locally, who I could special order the chair through. Finally, the chair was ordered. When the call came in yesterday that the chair was here, I was bubbling with excitement. Joe dropped me off at work and then headed up to get the chair.

Finally I sat down in my new wheelchair. It's perfect. I loved my old chair which has travelled halfway across the world with me, but this new chair is incredible. It glides. It's just a tad taller so I get out of it without need of assistance. It's footrests are higher so that I won't be bending the struts on cobblestones. But best of all, it rolls quite well on carpet.

So, I'm set, I've a new set of wheels.

I've been told, a few times over the course of my lifetime, that I have a difficult personality. That I don't bend enough, am not flexible enough, am too determined and too ready for a fight.

Well, thank God for that - I've got a chair.

And a warranty.

Ha!

OK, then

"She doesn't think of herself as disabled," hostile stare at me, "and that's as it should be."

OK.

I was told.

We were all set up to do a consultation when the parent who arrived informed us all the ways that his foster daughter wasn't appropriate for our service. No behaviour problem. No sexuality problem. No intellectual disability.

Yep, he's right, that puts her right out of our mandate. All she was, he said, was a kid with a physical disability who had questions about sexuality. I told him that I could give him a list of resources for kids with physical disabilities and he looked at me and said, "I think I could find those as quickly as you could."

OK, why the hostility? I understand that this was a wasted trip for him - we don't provide the service he asking for, but we've apologized, offered other assistance and he won't stop. Then he figures we need to hear her history of coming into care with him as a foster father. Sure. Why not. I love a story.

But it wasn't much of one. She came into care. He is a miraculous kind of foster dad who brought her out of herself and now you wouldn't believe she's the same girl. We smiled and nodded. He mentioned that she liked looking things up on the web.

I thought, "Why not" and told him to get her to take a look at the OUCH website. I know I write for OUCH and an biased but I think it's one of the best disability sites on the web. I told him it was about disability pride and disability community and she'd probably have fun with their quizzes and their humour.

He leveled his gaze at me and hit me with, "She doesn't see herself as disabled ..." Followed by an icy cold stare and "which is as it should be."

OK, then.

I glanced out and saw her. A nice looking 15 year old girl in a wheelchair. We hadn't met her because he hadn't allowed it. He wanted to check us out first, our service was found wanting, and now they were leaving.

OK, then.

Their early departure allowed me almost 40 minutes to sit back, close my eyes, and sream at him, have the outright fight and debate with him, ultimately tell him that I thought he was a smug over controlling guy who needed to get his own act together before he guided his child in any direction at all.

OK, then.

That done. I thought about it. Have I really gone off the rails? Why is it 'as it should be' that a person with a disability doesn't see themselves as having a disability. Particularly when they do. My friend Susan sees herself as a woman - I know because she was there with me and I asked her. Why is it good and healthy and desireable for everyone else to see themselves as who they are. Gay people see themselves as gay. Black people see themselves as black. Even Shriners see themselves and Shriners for heaven's sake. Self acceptance is part of the package for everyone else and self denial is what's left on the plate for those with disabiliteis.

What would be wrong with a 15 year old girl thinking about herself as a disabled girl? Oh and don't go giving me that 'person first language stuff'. I've never heard anyone say about themselves to themselves, I am a person who's a woman, I'm a person who's gay, I'm a person who's black, I'm a person who's Christian. Disabilities it seems has to go second, after person, because somehow the personhood is supposed to lessen the impact of the word disabled.

Warning, don't ever call me 'a person who's disabled' cause I'm a disabled guy. That's it.

Anyways, back to ranting here. I think it's neglect to have a disabled child and to parent them in such a manner that they spend a lot of time and energy into denying disability ...

"I'm just like you." This doesn't sound like a statement of pride it's like begging you to not notice or comment on my disability so you in your superiority and pity can let me go about the day with my delusion intact and you have your vaulted status reinforced.

Of course people with disabilities are different. Different doesn't mean LESS THAN it just mean difference. And the disability community isn't a step down ... it can't be ... we're not good with steps.

I shook myself, I always win the arguments I have with others in my own head so I felt cleansed by my indignation.

OK, then ... NEXT.

Big Deal

We'd gone downstairs for tea at the small coffee shop on the main floor. I was bundled up in housecoat, hospital blankets and my little urine bag rested by me feet on the footrest of the wheelchair. I didn't know then that my life was going to change and that wheelchairs would become a major part of how I got around. All I cared about was that I was out of intensive care and heading down for tea. This must, I thought, be a good sign.

I remembered all this yesterday, being home sick, talking about going to the hospital to get checked out. Instead, I just took nap after nap and drank ginger ale. But laying there I couldn't help remember how I transitioned from walking to rolling. How sometimes fateful things happen and you don't know that they are fateful until a while later. But back to the coffee shop.

Joe pushed me up to a table and went off to get us each a tea. The coffee shop is located right at the edge of a walkway and you can look down to the next floor where there is a larger cafeteria at the crossings of several pathways to specialist services. Joe set my tea down and we were both quiet as we drank our tea.

A fellow came in for coffee in a power chair and glanced around the coffee shop nodding at me, and only me as his gaze swept the room. After he'd gotten his coffee he pulled up to the table next to us and asked without any introduction, "So you disabled permanently or are you just hospital disabled?"

I was nonplussed. It was the first time I wondered if I would be in the chair for the rest of my life. I knew that I still couldn't walk without someone right beside me. I knew that long distances were out, for now. But I didn't know what the future held. The doctors had been non-committal and fairly uninterested. I had come into the hospital with two concerns, one a mammoth infection, the other was the loss of balance, of feeling in my legs. They were very focussed on the infection and had barely even begun to consider the legs.

"I don't know." I said and explained the perdicament.

"Well, if you are disabled," it's no big deal. "I've been so for most of my life. It's no big deal."

"What about accessiblity, what about attitudes?" I asked. He looked confused that I would even know about those things. "I work with people with disabilities."

"I'll grant you, it may be a big deal to others. It may be a bit frustrating at times. But that doesn't mean it has to be a big deal to you."

The converstation moved on to other things. I never did understand what brought him to the hospital that day, he was evasive on the issue. He glanced down at his watch and announced that he had somewhere to be. We said goodbye and he took off.

Before I got the news that I'd need a wheelchair there was someone to tell me how to think about it. How I shouldn't let the frustrations of inaccessibility or the attitudes of others affet me. How it shouldn't be a big deal to me.

And it isn't.

What a gift that guy gave me that day.

I remembered the two women who I met in Michigan. They were with an association of parents with Down Syndrome. Part of what they did was meet with new parents and talk to them about what it is to parent a child with a difference.

I hope they remember to say.

It's not a big deal. Beyond the frustrations of dealing with others, beyond the lack of resources and access. It's not a big deal.

Because, as I've heard over and over and over from others, it isn't.

Two O'clock

At about two o'clock this morning I woke up bundled in sheets and comforters. It's been unnaturally cold here over the last few days and it was nice to feel the warmth all around me. Which is completely not like me. I'm the kind of guy who sleeps just with the sheet covering me in the darkest winter night. I don't bundle up. Ever.

Unless I'm sick.

And at two in the morning I realized that I was really sick.

I felt nauseous and sweaty and had aching in all my joints. It hurt to turn, it hurt to lie in one place, and then I realized that I had a big day coming. I was doing consultations that have been set up for weeks. I fell back to sleep thinking ... what to do ... what to do ... what to do.

On rising I felt no better and in fact a wee bit worse. Even so I began to prepare for the work day. It took mountains of energy to move. I stood and looked at the shower then back at the bed. The bed won.

I'm taking the day off to get better.

I'm sorry that it will be a bother for a lot of people.

But I've spent much of my life teaching others to take care of themselves. To speak up and be heard. To assert themselves when necessary. So shouldn't I occasionally listen to my own speel? Just this once, those who can - teach?

What's the worse that can happen?

I'll feel better tomorrow.

Forgive me but this is the best I can do for a blog today.

Night now.

The Story About George

It was a weekend for parents. It had been well planned, they had day activities for children (of all ages) and long breaks with good food. The idea was to create an atmosphere where parents could both get information and be pampered all at the same time. It was perfect for me, as the speaker, too. I mean I like long breaks and good food too.

Though most of the parents came in couples, my audience was primarily singles. Many of the dads decided that goofing off in the city was a much more interesting way to spend time than sitting listening to someone talk about their child's disability. None of the women seemed to mind, some even seemed relieved. There were a few men there, all but one sat dutifully by their wives sides. This guy just sat on his own, listening and taking notes. He asked a couple of questions and there was something about him that really impressed me.

At one of the long breaks he sat down beside me and we chatted. It turned out that his wife was with him but was staying back at the hotel keeping an eye on their son. They felt that he was too young to be left in day care and they didn't want to miss the opportunity to get away and to learn things to help them parent. "Before you even think it," he said defensively, "I'm here because I'm better at taking notes and keeping information arranged than my wife is. I take just as much care of our son."

We chatted about their little boy, Owen, and he was bubbly with love for the kid. Something was really odd though. He seemed to have had no difficulty adjusting to a child with Down Syndrome. Most parents get to the point of total love and acceptance of their child, but for many there's a bit of a journey through grief and a time of adjustment. I felt none of that from this man. I didn't know how to ask, but I wanted to know, "Excuse me for asking, and there is no easy way to do this, did you have any difficulty at all with learning your child had Down Syndrome."

"No, not at all," he said and his smile widened.

"None?"

"None."

I told him that I was surprised, just a bit, by this.

He said, "We have George to thank for that."

There was a story there and I asked to hear it. He tapped his watch indicating that break was over and I had to return to the podium. I went back to talking, he went back to making notes, but my mind spent all of it's time glancing at the watch wanting to hear about George. When I finished the day was over and I caught him packing up and asked him to tell me the story, he said that he'd tell me the next day as he had to get back and give his wife a breather. She was going shopping and meeting with some friends. He didn't want to keep her waiting.

So he kept me waiting.

And I am keeping you waiting.

That's how things work in the real world.

The next morning he arrived just before the day started. His wife and baby Owen were in tow and everyone fussed around mother and child. Then it was time to start. She and Owen headed out for the day and hubby took his seat amongst the others. Finally, at first break, we were able to talk again.

Dad told me that he worked in a factory that made paint. I told him that until he said it I kind of thought that paint cans were picked off trees. I had no idea that someone actually made paint. Then he began the story. George was a guy with Down Syndrome who had a job placement at the paint factory. He worked with the janitorial team and was scheduled to be there only for a couple of weeks. But he took to the job, the men took to him, and he was hired. Full time at full pay. He was just part of the crew. This was, he said, several years before his wife would become pregnant with Owen.

He'd forgotten that George had Down Syndrome for the most part as the years past George was just George. Part of the janitorial crew, part of his shift rotation, part of the team. Big deal he had Down Syndrome, bigger deal was that he got along famously with everyone and had a wicked sense of humour. He knew little about George's private life and didn't much think about it either. When his wife became pregnant and he announced it to the team, George gave him a hug and told him he'd be a great Dad. He stopped here, looked away from me and blinked tears away. Back in control he told me that he was grateful for this because he wanted to be a Dad but was afraid of all the responsibility, the reassurance was just what he needed.

That summer, the summer of his wife's pregnancy, at the annual company picnic and baseball tournament, George suprised everyone by showing up with his girlfriend. He could tell she had a disability but he didn't have Down Syndrome like George. About midway through the picnic one of the bosses called everyone to order and said that George had an announcement to make. George came to the front with his girlfriend and announced that they were engaged to be married. The place cheered George who grinned back at everyone.

It would be almost one week later that he and his wife would get the news that the baby had an extra chromosone, Down Syndrome. The doctor, after delivering the news said, "I think it's best that we schedule the abortion now."

His wife, reeling from the shock of the news said, "Wait."

She turned to him and said, "What if this is George? He's got a job, he's engaged. What if we are giving up George."

He turned to the doctor and said, "Thanks for the information, but we're having this baby."

The doctor did not look kindly on their decision but saw that they were resolute.

So Owen George was borne.

They gave their baby that middle name to remind them of all the possibilities they wanted for Owen as he grew, but also because one day Owen would ask where his names came from. And they had a story to tell him.

About George.

Wave

You know how Volkswagon Beetle drivers wave at each other when they pass each other on the road? And bikers do that 'way cool' hand pointing down move when they catch site of one another on the highway? I'm still relatively new to the disability thing so I get that same kind of thrill of recognition when I see another wheelie in a mall, at the movies or just generally out and about. I think we should have some kind of movement of recognition too, it'd be fun.

When we went to see 'Becoming Jane' at the theatre in Framingham, there was a woman with a disability in a wheelchair taking tickets as we went in. She was the guardian of a world of fantasy and popcorn, now there is a cool job. There was a small line up as she took just a wee bit longer than a typical ticket taker. Every movement was studied and thorough. She took the tickets from Joe, ripped them carefully, handed half back and deposited the other half in the ticket holder thingy and told us in a voice slightly infused with cerebral palsy that we were in cinema 8 to our left.

As I drove around her I said, "It's nice to see someone on my team working here."

I could tell she wanted to say something to me, but she wasn't quick to speak and instead she said, "Cinema 9, to your right" to the person behind us.

The movie was bright and fun, the time flew by and Joe and I were buzzing about the film on the way out. We stopped for a pee, being over 50 and facing a twenty minute drive back to the hotel.

On our way out, I noticed that the ticket taker wasn't at her post and in fact no where to be seen. That is untl we were leaving the theatre and we spotted her off to the side of the front entrance having a smoke. Our car was parked off that way so we passed in front of her. She waved us over. She put her cigarette out and looked up at us and smiled.

"I've been benched," she said and it struck her really funny and she rollicked in her chair as she laughed.

We laughed too and continued on our way.

We've got to work at that wave thing.

Paperwork

I have spent a lifetime asking for things that those in my care need. I've done everything from a quiet word in the ear to ear shattering full frontal attacks - and every shade in between. I advocate with no embarrassment, I advocate from the stance that my job has many facets and creating healthy places, accessing appropriate serices and the right tools is one amongst them. Truth to tell, sometimes under all my bluster, I kinda enjoyed the fight.

But then is not now.

There is an office that I consult to on a really regular basis. Many of the staff there do not know of my new status as a disabled person because the disabled parking is right out side their door, and the office I consult in is right inside the door. Further the chair I sit in is tall and getting in and out is easy. So I always arrive early, Joe slowly walks me into the building, I hold on to his shoulder or arm for stability and then once down in the chair, I only get up and go to the washroom which is only a few feet from the door. It's been working. I'm not hiding my disability in any way, it's just that if I can do it walking, I will.

But there is a problem.

I noticed it right off. I've been working in that office for years before becoming disabled and I never noticed. The bathrooms have bars but the toilet is one of those that is really short, really close to the ground. Even with the bars, I'm not sure I could get up and off it. I size it up every morning that I arrive and every morning I see that it hadn't grown, magically, over night. So we worked out a weird strategy. If I had a need to toilet, ok, poo, I'd give Joe a call. He would be working about 20 minutes away, he'd come and pick me up and whisk me over to a fast food joint where I could use their john. I never had to use this fail safe strategy but it was nice to have it.

Joe said, "Why don't you just ask for a tall toilet?"

I said, "I can't do that."

We'd had that conversation several times. Then Joe through in a twist.

"If you had a client who had to go to that building and couldn't go to the washroom because they've got kindergarten toilets, what would you do, I was tired and distracted by other thoughts so I didn't immediately see where he was going. "I'd sit them down and talk to them about making the place accessible."

"Well, you've got a disabled client who needs a tall toilet, so ask."

I've known the director for years. The idea of talking about my need to poo in her work establishment was oddly difficult. But I did. I pulled her into a meeting room before the day started and told her what I needed. Her eyes widened. "Our toilets aren't accessible? We've got bars up." I explained that the bars are good but the toilet is really really low. "Of course we'll make the place accessible for you. No problem." A few seconds later she was out at the front desk talking to the secretary about investigating where to get a tall toilet and investigating how to get it installed.

That was it.

I'm not sure why asking for something - for someone else - is easy.

Asking for me is hard.

The way my disability is progressing, soon I won't really be able to do the walk from car to meeting room, I'd better get better at advocating from ground camp.

I'm going to have to take myself on as a client.

Oh, no, more paperwork.

An Unimaginable Life

"It's a good programme they got here." She is answering my question about how she is doing in her new placement. She lived on the streets for years and finally, when found that she had a disability and qualified for care, has a room of her own in a place that provides care. The file says that she has two children that she hasn't seen for years, she's had several boyfriends and a dark past.

As we talk she quietly answers my question meeting my gaze only seldomly. Years and years of hurt pour out of her. Rape, if not a daily occurance, was her only experience of sex. Two children of rape. Boyfriends who rented her out for money. A body that wasn't her own. A need to survive the only thing that kept her going.

Yet she seems so whole, so completely present as we talk. She describes her past with no need for pity, no desire for compassion, she's just answering questions. She smiles rarely but when she does, she's beautiful. She only has one goal, she wants to see pictures of her children, not to meet them or know them, just to see pictures of them. Check out that they are doing well. She doesn't wish to intrude on their lives, she doesn't wish to be reminded of the brutality that brought them life. Just see them. That's all.

As we talk the room seems as if the silence of the room wraps around the words she speaks. As if the only important thing in the world what she is saying. She wants to be understood, she want us to know that she is a woman of noble character who lived through ignoble circumstances. That she is here against all odds.

"What makes this a good programme?" I ask her.

"They let me be safe," she says not even taking a moment to think of an answer.

That's all she wants. And when she left, that's what we spent our time talking about. How we give her what she needs. Safety.

There is no greater goal for those in care than that they be safe.

There is no greater purpose for agencies that provide service than that they offer safe haven.

There is no greater promise that we make than safety.

All the rest is gravy.

Heart Breaker

We arrived at our hotel just outside of Boston and I decided to stay in the car as Joe went in to register. I was immediately glad that I did because as Joe went into the hotel another man came out with a lease attached to a dog that looked just like our wonder-dog Eric. Though Eric has been gone now for several months, I still miss him and it was like a wonderful shock to see this pooch leave the hotel. I spoke to the guy as he passed the car window and he stopped to talk. His dog glanced up at me and I saw intellegence in it's eyes as I was checked out.

Eric was a found dog, an abused dog, who came into our lives and enriched us for 16 years. This dog, I hear was also a foundling. The guy tells me that the dog and he connected while he was a grad student in New York City, he was alone, so was the dog, that was that. I told him a bit about Eric but had to stop as I got myself all choked up. Then his wife came out of the hotel and said hello to me as she figured out, correctly, that we were talking dog.

A little girl peeked out from behind her mother's legs and said distrustfully, "Don't let him take our dog." I smiled down at her and saw that she had Down Syndrome, I told her that I wouldn't take her dog away. "That's good," she said and went over and wrapped her arms around her dog and looked defiantly up at me. I swear the dog smiled.

She was a beautiful girl. I'm bad at guessing ages but she was probably ten or eleven years old. Like her parents she was beautifully dressed and like her mother, she was stunning. She and I talked about dogs and when I told her Eric had died, she teared up and said, "Well, maybe you can have Lucy." I choked up again and thanked her for her kindness but it wouldn't be fair to Lucy to have to get used to new people. She thought, deeply, and said, "Yeah, that's right." I could tell she was relieved.

I turned back to her parents and said, "That little girl is really going to break some hearts one day." I truly didn't mean anything other than she's beautiful inside and out and she will one day be a real catch. But mom swung at me with her words, "And what do you mean by that?" I could tell she was angry.

"Whoa, Whoa," I said and explained that disability was what I was and what I did. I told her that I work with many people with Down Syndrome that were married, had jobs, were adults. I didn't see anything about her little girl that told me that this wasn't possible. She was beautiful, socially skilled, kind, what's not to like, what's not to love.

She stood there frozen for a few minutes, Dad had begun to tear up so he covered it by bending down and petting Lucy. Joe came out of the hotel and stopped. He could tell, he said later, that something had just happened. "I leave you in the car for 15 minutes and you are up to your ass in an emotional mess," he said later.

Mom came back from where ever she retreated. She smiled, said, "Thanks, I just never thought ..." and they were away.

"You OK," I asked to her retreating back.

She turned and said, "I'm not used to strangers talking about my daughter as having possibilities. I'm not used to thinking of her as an adult and being married. This has all just thrown me, I guess."

Dad scooped up Lucy and jogged back and let me pet Lucy through the car window. I thanked him.

When he left, we were both crying.

Yellow Marker

The report was good. Everybody said that he was doing well. He'd set goals, acheived them and moved forward. I looked forward to meeting him, I hadn't seen him for some time, a few years at least, and it was nice to be going into a meeting with him that bore only good news.

He'd aged. So had I. We chatted a bit about knowing each other for years and then it was down to work. I'd told him that staff were thrilled with his progress. He'd become more mature, more responsible and more capable. He was relying on internal controls rather than external controls. We reviewed the goals he'd acheived and it was nice being able to remind him of where he was the last time we spoke, and then to compare that to where he was now. I could tell he was proud of himself.

I asked him to give me an example that really showed he was doing well. This is one of my favourite clinical questions. It tells me what he thinks is important, what he's proud of, where he sees improvement. He thought for a while. As he did my mind, as it always does, leapt in to fill the silence, I tick, tick, ticked, my way through his list of achievements while waiting for him to sort out his answer.

"There's no more yellow marker."

Forgive me but I didn't have any idea what that meant. I looked at him confused, I didn't even say anything, I just looked like I didn't get it.

"You know, yellow marker. There's no more yellow marker."

I said it, "I have no idea what you are talking about."

"You don't know about the yellow marker?"

I shook my head.

"The staff write notes and if I've been bad they use a yellow marker over what they wrote. There's no more yellow marker."

"Oh." I suppose that's good.

But suddenly I got this creepy feeling that right then, right at that moment, a great big pen was writing in the Book of Life upstairs, taking notation about how I lived my life, handled my temper and my tendancies, how I was with others, how I behaved.

I picture a sea of yellow marker highlighting everything I've ever done wrong all over those pages.

A resolution.

No more yellow marker.

Vacation

It should have been a tough weekend. Full of bitterness and anger.

But it wasn't.

A few weeks ago we planned a four day holiday. We were going to leave on Saturday morning, bright and early, for Montreal for an overnight. Then on Sunday we'd visit Phil on our way down to Boston were we'd have a couple of days off before working there on Wednesday and Thursday. Not much of a vacation but it was all we were going to get this summer.

Then on Friday last I was doing a series of consultations and when I looked at their calander I saw they had me in again on Monday. I checked that against my own calander and found that we'd made a booking error. I couldn't be on vacation because I was booked to work. I don't know how we did it, how we made that mistake, but we did. I called Joe quickly and told him to cancel the hotels, the cars, the visits with friends.

It was impossible to cancel the work day because the therapist would be on maternity leave by the time I got back from Boston. It was now or never. There is no way I would let our mistake get in the way. So, it was cancelled. I had tears in my eyes when I made the call, but I knew it was the right call.

So, leaving work on Friday knowing that our weekend would not be as we planned was not a happy event. But we talked about what to do and both of us were feeling cheated - we take few vacations and something always seems to come up. On Saturday morning we were chatting about cabbage rolls. After all these years together you've got to talk about something and we were talking about cabbage rolls. The decision was made, we'd make a wack of cabbage rolls, some to eat now and the rest to freeze for later.

Saturday we bought the stuff and made the sauce. Sunday we made the stuffing and boiled the cabbage and rolled the rolls. It was fun. And satisfying. And oddly restful. When done we'd made 29 huge cabbage rolls and had the bulk of them in the freezer parceled into foil pans ready for reheating.

It was my first really big cooking adventure using the house wheelchair and I found my self quite agile despite sitting down. We worked as a real team together, each doing our parts contributing one to the other. We put a lot of work into those cabbage rolls.

And yet.

Yet.

I feel rested.

Like I'd vacationed. Had some real time off.

I'm OK with going to work this morning. I don't mind at all that we didn't busy up the days of with going away and staying in hotels and navigating an often inaccessible landscape. I'm OK with our vacation, right in our own home.

Roll Model

Years and years and years ago, back when I was a mere slip of a boy, I ran a summer camp for kids with physical disabilities. I got the job because of my experience working as a classroom assistant with teens with similar disabilities at a school in Toronto. I took the job up with excitement and had lots of ideas for what we could do together that summer. I had the option of hiring the last few staff to work on site, most of the staff were summer students that were hired around the same time I was.

My first hire was Gerry.

She was a young woman with cerebral palsy that had been a student in my classroom. An impressive woman, I knew that she would do a good job and would be able to relate to the campers in ways that none of the rest of us could.

She was thrilled to get the job and the first thing that she wanted to do was have a group of those who had difficulty communicating. Gerry had a thick cerebral palsy accent that was only difficult to understand upon first meeting her. After a very little bit of time, she was clear as a bell. Gerry said that when she was at camp she felt more of a kinship with others who's speech left them behind. She wanted a group wherein everyone was equal, none was left behind. Good idea, she set about setting it up.

I never told Gerry that hiring her had caused me no end of difficulty. My boss, who was initially really pleased that I took the job, was now furious. She didn't want someone with a disability on staff. She even made a deal about the fact that Gerry would need assistance with toiletting. I pointed out that we had that support available for campers and before I could continue I was told that the assistants should have to provide that service for 'staff'. I tried to make the point that Gerry was a great role model. Imagine the campers seeing someone else with a disability on staff! It was a testiment to the fact that they could work, have a future, have a life and further - have power.

They didn't fire me. Or her. But I knew that the blush had gone off the rose and it was a harder summer for me than it need to have been. A week or so before the end of camp, I told Gerry that she'd done a good job and that I'd hired her partly to be a role model. She was mightily offended. She came to work the next day with the words 'Roll Model' on the back of her chair. We scraped about it for a while and then we both gave up, neither convincing the other. I still thought she was a role model, she still thought that she was a camp counsellor, nothing more.

Perhaps I am old school. I think it's important to have role models. I was excited to learn about Gretchen Josephson, the poet with Down Syndrome, Hikari Oe, the composer with significant intellectual disabilites, Ramond Hu, the artist with Down Syndrome, Virginia Hall the spy with a physical disability - the list is endless.

No, of course I don't think that all people with disabilities need to be inspirational, but it's wonderful that there are some who deserve to be lauded. Every minority has those it honours, why not us, why not ours?

A hero is more than a sandwich.

Bus Girl

She is sitting in front of me. Sad. Defiant. Thinking that she is so alone in the world. Thinking that I could have nothing to offer her. How could I? She has Down Syndrome, she's been dumped by her boyfriend, her world is at end. I'm just some guy who doesn't understand. She spits out the words 'social worker' like they were distasteful in her mouth. I don't know her history with helping other, but that's not what worries me now. The referral said that there was fear of suicide. That the break up with her boyfriend had been sudden and he'd been a bit unkind when it happened.

After a half an hour, I couldn't get her to open up even slightly. She wound down into her world, a world that excluded me, her family, her staff, anyone who wasn't Down Syndrome was out. We could not get it. We would never understand what it was like to be her, to lose something so valuable. She, like many with diabilities, saw the world as full of haves (us) and have nots (her). And that was it. I offered her another coffee, she accepted, and I left the office.

I could have called for coffee but I wanted to be out of there. Her depression had sucked the air out of the room and there was nothing left, no room left, for anything else. She was dragging me down in the current of her self hatred and self pity.

Pouring her coffee, I got an idea. I quickly went to a phone and called Joe, I asked him to get me a book out of my library and bring it to the office as fast as possible. While on the phone he picked it off a shelf on my desk where it has sat since I bought it. Close at hand to bring down and flip through.

He was at the office twenty minutes later and the secretary knocked and handed the book in. I told the young woman that I wanted her to see the book. She snorted, actually snorted, now she knew I was dumb as a post. I flipped the book through the the last page and said look at this. She didn't look up. A couple of prompts later and she looked up with that attitutde that if I don't do what he says, he won't stop asking.

Her eyes hit the picture and froze. Time stoppped.

"Who is that in the picture?"

"You really want to know?"

"Yes," she sits up staight, interested.

I take the book from her and pick out a couple of lines "Gretchen L. Josephson was born with Down Syndrome ..." The book was almost ripped from my hands. She flipped back to the picture and looked at it for a really long time. She then looked up and asked, "She wrote this book?"

"Yes," that had her floored, but that's not why I brought the book, "The book is called "Bus Girl" in it she writes poety and some of the poems are about the break up with her boyfriend after an impassioned love affair. I thought you'd might like to hear some of the poems."

She simply nodded, stunned that such a book might exist. I began to flip through the book to the section under Love, for disappointment and despair and she took the book from my hands again, this time more gently. She looked at the picture again. Her fingers traced the outline of Gretchen's face and then she handed it back.

I read first, The Bedroom Blues

When I wake up in the morning
I still have tears
running down my face.

I rub my eyes
I stumble
My bones creak

When I see the empty bed
And the love that was there

I sure do have

The bedroom blues.

This is followed by a few other poems. She is crying now. The good kind of crying. The crying because it hurts. The crying that gets the hurt out. Then I put the book down and wait. Now we really talk. Her distrust of me has gone, no I don't have Down Syndrome and don't know what it's like for her but I had brought her a voice that she could hear. She asked if she could come back and we could read some of the other poems together. I told her that Gretchen wrote poems about being happy too, that the pain didn't stay forever that she grew out of the pain and into a life without her boyfriend. She nodded, "I'd like to hear the happy poems too."

When she left I picked up "Bus Gir: Poems by Gretchen Josephson" flipped to the back of the book and gave the picture of Gretchen a little kiss. She managed, like artists do, to reach through the pages of her book and help someone else.

It was a good day today.

Reference

Josephson, Gretchen (1979) Bus Girl: Poems by Gretchen Josephson, Brookline Books: Cambridge MA

Mom Picked the Movie

"Shhhhh ... listen." One of my friends was sitting next to me while the others were out getting popcorn and pop. We'd arrived about 10 minutes early for the movie and were getting settled. We'd come to see a kids movie, "Underdog", because we all discovered that we'd been fans of the cartoon series when we were kids. We expected little from the film except to be reminded of youth. When we got there, we weren't just reminded of youth we were surrounded by it. I was engrossed in doing the premovie quiz they had up on the screen and had just guessed an answer when my friend said, "Shhhhh ... listen."

Behind us a couple of rows were two small boys with their mother. We'd seen them come in and both boys rushed behind their mothers looking very much like puppies who'd just learned to walk. The boys looked to be separated in age by a couple of years with the oldest being around 6. They were in deep conversation with each other.

"What's wrong with him?" said little brother.

"Who?" said older brother.

"Him" said little brother, they were behind me but I could imagine him pointing at me.

"There's nothing wrong with him." said older brother surprising the hell out of me.

"But he's not sitting in the chairs, he's got that one with wheels." said little brother.

"There's a kid in my class at school who is in a wheelchair." said older brother as if that was explanation enough.

"What's wrong with him?" said little brother who had difficulty shifting from this question.

"Nothing, he just can't walk." said older brother.

"Really?" said little brother.

"Yeah, he's the same but just can't walk." said older brother.

"Oh." said little brother.

"That's why they make wheelchairs." older brother continued pleased to be a fount of wisdom for his kid brother.

"Who's Underdog?" asked little brother moving on now.

"I don't know mom picked the movie." said little brother. Then they were off onto how dumb mom was.

That, my friends, is what integration does, it allows little boys to grow up knowing that different can be the same, and the same can be different. He knows this at 6.

The world has yet to catch up to him.

If I had ...

I love my desk. It's exactly the way I want it. Stuff jumbled all over the place. Books of fiction mingled with nonfiction mingled with books I've written. A huge pile of papers that promises to fall over but somehow doesn't. A clock in the shape of a jesters cap. A calander from Avon. My trusty pocket dictionary that has a worn cover and pristine pages because I'm too lazy to use it. It is, in effect, a mess.

If I had a staff, they'd make me clean it up.

I'm not shaving today. I've got a meeting but it's with a team member, not an outsider, so it's ok to be a little shoddy today. I get tired of shaving. My face needs a rest. Besides it makes it feel like a holiday, even when it isn't. So when I get out of the shower, I'm done. Ready to face the world with stubble, my little bit of defiance.

If I had a staff, they'd shave me.

It's been too hot to wear my housecoat so I'm sitting here writing this in my favourite shirt, a huge old thing with a stain in the front, a rip in the back and a breastpocket almost ripped off. It's a cool shirt. I've had it for years, if it could talk, I'd have to pay it to shut up. It was, once, a nice kind of green, but now it's the colour of bread mold. Great shirt.

If I had a staff, they'd throw it out.

A group of us are going to the movies after work today. It's a great way to keep cool, and besides, I like the movies. Part of the movie experience is a bucket of popcorn covered in buttery tasting edible oil product. Yeah, I've read the reports about how a bucket of popcorn has enough calories to feed a third world country for two months, but I don't care. Movies, popcorn. Popcorn, movies.

If I had a staff, they'd make me go on a diet.

We don't have much as an adult. When I was a kid I thought adulthood was going to be busting full of freedom. It's not. It's work. It's paying bills. It's worrying about having money to pay bills. It's wanting what you can't have. It's hurting others by accident and sometimes being hurt on purpose. It's tough. It's nice to have wee bits of freedom. Things that are quirks to others but incredibly necessary to the soul. Things that make me different from everyone else. Things that let me know that in my little corner of the world, there's room for me.

If I had a staff, I'd hope they'd get that.

Lunch

We'd gone out for lunch in Collingwood. As Susan and I had an appointment up there and as I knew I would need Joe's assistance with the wheelchair and with getting in and out of the building, he drove up with us and we all had lunch before heading to the meeting. We were seated at a table for four in a popular restaurante that filled with the lunch trade. Collingwood has lots to offer for summer visitors and it wasn't hard to pick out the families on summer vactations.

The table closest to us had a family of 5. Dad sat at the head of the table, the two young boys sat with their backs to us and the youngest child, a girl, sat beside her Mom on the other side of the table, facing us. I noticed them only briefly when they entered the restaurant as did Susan. We were doing an intake for the Sexuality Clinic so we are always aware of who's around so that we can govern our conversations appropriately. We sometimes forget that words we use on a day to day basis can be shocking or upsetting to those who hear only snippets of conversations. Surrounded by families with children we switched to safe topics like movies, summer bbq's and the like.

Then I noticed one of the boys turned and looking in my direction. As a big, fat guy in a wheelchair, I get looked at a lot. Most of the time I brush it off, but sometimes it annoys me. When children stare, it bothers me that their parents - like this kid's Dad sitting right beside him - don't parent. I was taught not to stare. Now this kid's dad doesn't need to cuff his kid upside the head like my parents did me, but he could have said something.

Joe and Susan were in mid conversation so I mouthed the words, "Don't stare, it's rude" to the boy looking at me. He didn't flush, didn't look away, didn't seem to notice my words or my discomfort with his open gaze. I looked, frustrated up at Dad who was also looking in my direction. But because Dad was taller I could see that he was looking up and over my shoulder. I glanced round and saw a television set behind me playing the sports channel. I quickly glanced back down and really looked at the kid and saw that he wasn't looking at me at all, he was, like his dad looking at the television behind me.

I was so pleased I hadn't spoken louder or in any way caught the child's eyes. I would have looked like a bitter, suspicious old toad who anticipated and expected the worst in others. I would have looked like someone who assumed the worst of humanity and was ready for a fight that didn't need to happen. I would have looked like I had marinated my self in self-righteousness and was ready to fly off the handle at the slightest provocation.

It is my fervent prayer that I don't become that person. That because I've changed status by becoming a member of the disabled classes, I don't cloak myself in negative expectations. I don't want to become dominated by anger and closed to discourse. I don't want to decide that I've learned what all I need from human enterprise and therefore give up on others, on myself and on future friendships.

I know that being in a wheelchair has changed me in the eyes of many. I just don't want to become what others expect.

So I apologize to that kid.

Even though he never noticed what I said to him, I had no right to speak before I understood what was going on.

I'm learning that a lot recently.

Difficult Decision

I have just made a difficult decision. I created this blog for several purposes, I wanted to discuss disability issues, have an avenue to air my point of view, engage in a dialogue with readers. Up until yesterday I have been thoroughly enjoying all aspects of this blog.

Then yesterday I began to get comments posted from ARRSE readers who were upset about the stance I took regarding the website. If you'd like to review, Stephen first put me on to the problem in his comment to the post I wrote 7/4/07 called Enough Said. In his comments he talked about a thread on the ARRSE site that used horrific language and abusive images of people with disabilities. I was appauled and wrote a response calling for a protest on 7/5/07 in a post called Go! Now! Start!

Several people mobilized, sent several letters of complaint, the thread was removed and the operater of the ARRSE site was very kind and very nice to deal with. To me, that was it, it was over. Then, for some reason I do not understand, ARRSE readers who took exception to our protest began writing yesterday.

Several of the posts were reasonable, asking us to think of the stress that military personnel face and making claims that indeed most of ARRSE readers and contributers were very generous when it came to disability issues. They argued that this was just an issue of dark humour arising from having seen the darker side of the human soul. This argument might well have stood, however, many of the other comments were simply abusive. These kind souls who would never hurt anyone certainly didn't hold back in trying to hurt me. Name calling, denegrating remarks about who I am and what I do, and then finally the use of ugly language regarding people with disabilities.

I was accused of editting and removing posts, which I did not do. I found leaving them up more instructive as to the true character of those corresponding than anything I could say. However, this site will not and cannot allow language that beats or berates people with disabilities to be posted on site. I have not removed those comments, leaving them there so that no one can suggest that I am fabricating their existance.

Therefore I have made the difficult decision to make it more difficult to leave comments on my blog, making it such that anonymous comments are no longer accepted. I grieve making this decision but I am unwilling to be constantly inundated with hateful email from those pretending to be the kindest of souls.

It is interesting to me that we are all asked to have a sense of humor, perhaps we all need a sense of decency as well. I stand firm on what we did in protesting the language of hate used against people with disabilities - we had a right to protest. So do they, but they do not have a right to abuse me, my readers, or people with disabilities here on this blog.

Bejeweled

Suddenly, I've become addicted to a computer game. This is unusual for me as I'm not much into playing games on the computer. I'm as guilty as anyone for playing the occasional game of solitaire and the even more occasional game of Word Whomp. But I use these games as little treats after writing reports or blogs or whatevers on.

But this game has me really additiced.

Joe too has gotten into playing it. He's a confirmed anti-gamer with the exception of Spider Solitaire. Joe thinks that crosswords come from the 'mothership' of entertainment. He doesn't get games and thinks most of them are just silly. But there he is glued to the screen playing game after game of Bejeweled.

It's a simple minded game, you line up gems in three or more and they disappear to be replaced by others. It's not a game that requires much in the way of skills. But we're spending hours and hours playing it.

Someone said something at work the other day, and now I think I know the attraction of the game. One of the people I work with was in my office and talking about how difficult the job is, emotionally, and was recounting a story of running into the ED who made a brief comment like, "I've been getting good feedback on your work, thanks."

"That's what I needed. I didn't know it, but that's what I needed, just a little bit of praise!"

Funny that we who work in a field that believes in positive reinforcement, for them, don't practice it much with us. I'm good a self reinforcing, it's a skill I learned as a child, so I don't notice going to work day after day after day and getting pay without praise. Sure people are friendly and welcoming, but no one says much about my work - to me. Ummmm, I don't say much about their work to them. Yet I work with people who have skills I really admire.

I was thinking about this while playing Bejewelled, that way I could bill it as work time, and suddenly the game spoke to me, "Excellent" it said when a bunch of gems all exploded at one and point ranked up. I grinned, pleased with myself.

The game is 'reinforceing' me. It's giveing me praise when I play it well.

It's stupid, it's a game, but that tiny bit of praise felt good.

I know from all sorts of experience how praise, honestly given, can affect the self esteem of children, with or without disabilities. I know how praise, withheld, can damage even the best of relationships over time.

So why do I fall out of the habit or being opennly positive?

I don't know why but I did.

Who needs New Years to make a resolution?

Mine begins now.

Excellent - thanks for reading my blog, I truly appreciate it.

Balance

I made a wee bit of money yesterday. Unexpectedly.

Joe and I were heading into Barrie yesterday to see a movie and do some grocery shopping. We decided that it was time to bring the change jar to the 'sort and count' machine that sits by the checkout tills in Sobeys. We got me in beside the machine with the change jar and then Joe headed off to get a buggy and to start shopping. The jar was very full so we knew it would take at least ten minutes for me to dump the change into the tray and then scoot it down into the counter.

I enjoy this job. It's been mine for years, ever since Sobeys installed a change sorter and counter. We always bet how much the tally will come to and we are always far short. So I sat there dumping change, sliding it through the slot and watching the electronic counter add up the money.

"Clink, clink," came the sounds of change that I didn't add in.

Some old guy, much older than me, threw his change into mine, smiled and then rushed away. My cheeks grew hot with embarrassment. Suddenly I realized that I might look like some poor crippled guy turning in my earnings from my tin cup.

"Clink, clink," it happened again. This time it was a young woman with a baby gazing at me as she sat in the basket of the cart. "I hope this helps," her mother said as she walked by.

Believe it or not, I was too stunned to say anything.

Now I'm rushing to get the change in and sorted so that I can get out before anyone else gives me change. I am so conflicted. How dare they think I need their change? Isn't it nice that people want to give to others. HOW DARE THEY THINK I NEED THEIR CHANGE? I have to stop thinking about it and just get the damn change into the machine.

I'm watching others to catch anyone as they approach. I don't want any more change from anyone. I see a young guy, pants hanging low on his hips, approach. "No, thanks," I say and he looks at me confused. Rushing, I explain, "People have been dropping change in here, I'm not a begger, I've got a job. If you were going to give me change, I really don't need it." I can't believe how embarrassed I am. I'm stumbling over my words.

He leans over and glances in the bin and at the amount, "Well got any extra in there for me? I'm not to proud to ask." Now I see that he looks like he could use the money, "Sure," I say and thrust a handful of twoonies and loonies into his hand.

"Thanks, man," he said and strolled on.

I think I gave him more than they gave me.

Balance has been restored to the universe.

Fixing the ADA in the USA

In her response to my post yesterday, Andrea asked me to blog about the petition to restore the ADA in the US. I went to read her post and decided that instead of me writing a bland version of her post that I would ask Fat's American readers to please drop by and read her post on the subject and then go sign the petition. Her address is reunifygally.wordpress.com, once again I'm sorry I don't know how to make it so you can just click and go. Thanks for giving us the heads up about this Andrea.

Hierarchy

Insolent.

Rude.

Bored.

Slumped back in the chair distractively answering the questions like I was the stupidest person on earth. Hair dyed bright yellow, not blond, yellow. Cell phone flipped open, reading texts as they came in. I didn't know if I should put down as his primary diagnosis 'mild intellectual disability' or 'profoundly teen.'

Teens with a disability are a whole new breed from what I'm used to. "We found for integration and inclusion and got ... this." I thought as I continued on with the intake meeting. Then he looked up at me and said, "So why are you in the wheelchair?" I made a joke, "Because I can't walk." He took it as an answer rather than an attempt at sarcasm - which I thought he'd enjoy - you know, speaking in his native tongue. So I let it drop and continued on.

"Ask me why I didn't sit beside you." Once again he was looking intently at me. I had noticed that he sat a bit away but I thought that's so he could drape his lanky body over three chairs in the meeting room. "I'm ok with where you are sitting." I said and attempted to go on. "No, ask me."

"Why did you sit over there rather than here by me?"

"Because I don't like sitting next to people in wheelchairs." That caught me off guard, to be honest it also pissed me off a bit, and I think my feelings showed in my face, he saw them and continued, "I feel sorry for you guys, being disabled an all."

I so, so, SO wanted to say, "Yeah, well so are you."

But I didn't. Sometimes I think that part of my fee is for restraining myself and corralling my tongue. I just said, "Oh," and went on. As the interview continued it swung round to issues regarding his disability and there was no question that he understood that he had an intellectual disability, that my service and the service of his social worker were based on that disability. He had no problems with that at all.

Interestingly I have met many with intellectual disabilities that see those in wheelchairs as having the 'real' disability and see themselves as much different, and in many ways, much better off than their disabled counterparts with physical disabilities.

Ironically, I have also met many with physical disabilities who want to distance themselves very far from those with intellectual disabilities and in ways seeing intellectual disability as the 'real' disability and themselves as much different and better off than any one with an intellectual disability.

Odd, huh?

It's like even in the disability community there is a heirarchy created by those within. It happens in every minority community, ranking people on some internally created yardstick. Pity that we can't all see that our own heirarchy means nothing to bigots - we are all tarred with the same brush, all lumped together into the same stall. And given that we live in forced confinement with each other, wouldn't it be better if instead of ranking we organized ourselves by strengths and modelled the respect we all want.

Parents, too, play part in this. I remember one mom who honestly told me that she always compared her son to others with disabilities and was relieved when the other's disability was more significant. She said that she could relax into the 'at least my son isn't as bad off as him." She said that she was trying to stop thinking that way, that she had to see her son as part of a greater whole and that he fit where he fit without comparisons and without superiority to one and inferiority to another.

Good goal.

Wonder if we'll ever get there.

Just One Of The Dwarves, Please

"He has Down Syndrome."

"Oh, I see."

It seems that often, once you say, "Down Syndrome" an entire image is supposed to form in your mind. Like you've learned the most important thing about someone and now have a pretty good idea of who they are. I just finished reading a book wherein you find out near the end that one of the main characters had a child with Down Syndrome and, at that point the author expects us to 'understand' something about that character because of how he reacts to the child. It's an easy ploy, a way to telegraph something about that charater to us.

But it doesn't work.

People with Down Syndrome have as much variation, one from the other, as any other two people do. Some drive, some walk. Some talk, some struggle. Some smile, some cry. Some are skilled, some need lots of help. People don't wear Down Syndrome like a tailored suit - one size fits all. I made a comment about this to Joe, telling him I liked the book but thought that the inclusion of Down Syndrome that way was a cheap trick.

Joe nodded, like he does when I'm on a tanget.

"What? No What?" I pressed him.

"You do the same. You always write about people with Down Syndrome like that guy who we saw drive the car, you don't much write about guys with Down Syndrome like the guy who always waves us off at your office. If people only knew about Down Sydrome from your blog, they'd be surprised to find ... what was your word ... variation."

"Why do I even have these conversations with you, you just don't get it!!"

We let it drop. The weather is extremely hot. We don't have air conditioning. The radio said either avoid heat or avoid conflict - everyone is edgy. So, I let it drop.

Then Joe picked me up from work and I saw the guy he was talking about. He's got Down Syndrome and though when he waves us off he has a ready smile and wave, he doesn't have that joie-d'vivre that othes with Down Syndrome are purported to have. His face looks purpetually startled, like he's constantly discovering something vaguely unpleasant about life. If he met the seven dwaves it would be 'grumpy' that he had a beer with. Or, so that's my impression.

It's also my impression that he has a whole life, goes to a day programme, is involved in the community. But he ain't ever going to drive a car. He's not going to hold down much of a job. If you are looking for someone with Down Syndrome to make your day brighter like a smiling Buddah, you're looking in the wrong place.

I wonder why people, and writers like me and the other guy, use people with Down Syndrome in ways that both break stereotype by encouraging stereotyping. Why is there a burden put on someone with a disability to 'rise up and above' their disability? Why can't someone just go about having Down Syndrome without having to brighten the world for others? Why does someone already carrying the weight of disability also have to be lumbered with the job of inspiration? This guy just goes about his day. Does what's required of him. Smiles only when he wants to. Grumbles when something goes wrong.

There were seven different Dwarfs but we want only one picture of disability.

Lights. Camera. Inspire!

Attacking Panic

Take that panic.

I'm still here.

I have the deepest fear about dentists. Of all my phobias, and I have a few, this is one I hold in earnest. Growing up in a small mining town and having parents who had just enough money to get by, dentistry was something that was used to remedy pain, not promote health. We couldn't afford the local doctor of dentistry so we used to go cross the border to Metalaine Falls to see the bargain basement dentist there. It was a hair raising experience. We understood why when we arrived for an appointment to find the dentist office boarded up and local residents telling us that the dentist had been a fraud, a guy with forged dental certificates, who left town before being arrested. He left town with his bags and my confidence in dentists.

So, I go when I'm in pain. Get it done and get out. I have to deal with rising panic for days, horror pictures of dying in the chair, blood spurting from drills gone mad, dance in my head. It's horrible. Then I heard about this dentist in Richmond Hill that volunteered time to practice dentistry with people with severe intellectual and physical disabilities. He was supposed to be a kind and gentle man who did everything he could to make the practice of denstistry accessible to those with deep seated fears like mine.

I go to him rarely. When I have too. My teeth are always a mess when I go and he always admonishes me gently. Like today, "Have you been admonished yet?" "No." "OK, consider it done." Then he straps a thing over my nose and pumps gas in to settle me down. It works. But I'm still aware of what's going on.

Today I had a new hygienist who didn't know my history and my fears.

Before she started I heard my dentist say to her, "Take the time you need, don't rush him through, let him rest when he needs to, everything can be done in an atmosphere of trust and safety. Let him know that you'll be careful and that you care about his experience here. I'll check in occasionally and see how you are both are doing."

I think he thought I was asleep because my eyes were closed and I was drinking deeply of the gas and feeling relaxation, chemical relaxation but relaxation, seep into my bones. I was really touched that he wanted my fear respected, my pace honoured and my experience valued.

These are the kind of people who should be caring for others.

This is what I want for me. So this is what I want for others.

And a message to panic .... nan na na nan na na ... still here.

Ymir

There were a group of ruffian boys from Ymir. As Ymir was a few miles outside of Salmo, where I went to school, they arrived in busses. The whole tenor of the hallways changed when the boys from Ymir arrived. They didn't terrorize the school with violence but they managed to intimidate pretty much all of us with their swagger, their angular bodies and their aggressive chins. One of the leaders of the pack was in a grade older than me but in a class by himself. He wore tight jeans, slicked back hair and had a rat tailed comb always jutting out his pocket. He probably could speak but was way to cool to actually say anything. In short, he frightened me. They all did, those Ymir boys.

We crossed paths one day, unexpectedly.

It was gym class and the regular gym teacher was away. They didn't have a substitute in for him so the shop class teacher took over for the day. He told us that we were going to wrestle and had us pull mats out on the the floor. I refused to wrestle. The idea of wrestling bothered me. I grew up in a home with violence, I didn't need it thrust upon me at school. So I just refused. Completely. The regular gym teacher just gave up on me - which was the point of my plan. But Mr. Meyers wasn't having any of it.

When I told him, right off that I wouldn't wrestle, he told me that I would do exactly what he told me too. I had nothing to lose. I wasn't taken seriously in any aspect of my school life so when you have nothing and have learned to want less, you have a certain degree of power. What could he do? He became increasingly angry and it was clear that he wasn't used to having his authority challenged. Especially by this weak, fat, stupid boy.

Others using the gym stopped. The Ymir guy was there, I am so sorry I don't remember his name, and watching along with everyone else. I think they were interested to see how it would play out. Myers began to sweat and then grabbed me hard. Illegal hard. Brusing hard. He thrust me onto the mat. I lost my balance and fell. One of the other kids from my class, a young sociopath, was told to 'partner' me in the match.

He fell on me with glee. I didn't fight back. I refused. All I did was struggle not to be toppled or hurt. But he did hurt me. Badly. I cried out in pain for it to stop and Meyers had a glint in his eyes that wasn't healthy. Now I'm on my back and this animal/child is pummelling me. I am truly frightened now. I can't help it I start to cry. He's really hurting me. The other kids egg him on. Laughing. No surprise, I'd been bullied my whole life, hurt for no reason, taunted as easy game. It was fun for one and all.

I didn't see him coming.

The Ymir boy.

He seemed like a man then but he was only a young teen. But one year older, one grade advanced, in those days made a huge difference.

He grabbed the kid off me, flung him to the floor so hard that I could feel the floor vibrate below me. He grabbed my arm and hoisted me up. He told me to go change.

Meyers was furious. But he was also terrified. He knew that this kid was dangerous to him in a myriad of ways.

He let it go.

He let me pass.

A day later I saw that kid in the hallway and I wanted to say "Thanks." But he stopped me, looked at me angrily and said one word, "Don't."

That was it.

He protected me when he didn't have to, he put his reputation as a guy who didn't give a shit about anything or anyone at risk, he saw an injustice and acted, he didn't want thanked for it.

He's still a role model for me.

That boy from Ymir.