Church Lady

It was her cane that I recognized. Until I saw it all she was to me was an older woman shopping for cheese in the local grocery store. Then I spotted her cane, a jaunty one of a kind piece of usable art. "The church lady!" I thought. Joe and I had begun to go to a church near us a while back and stopped because it was a frosty cold kind of place. The only person who ever spoke to us was an elderly disabled woman who sat at the back of the church in the "disabled and elderly" seats.

So I pulled up next to her and said hello. Joe was a few feet behind me picking up pizza rounds but soon was beside me greeting her as well. She's a delightful woman and dove into our chat with enthusiasm. She told us that she was pretty much housebound now and that she was relying on daily nursing care in order to stay at home. She wasn't whinging or moaning, she was just describing her life - because of our brief church attendance she was treating us as old friends.

Then she asked about us, the social arts as often practiced by the elderly are beautiful and graceful, and showed real interest in our answers. We talked a bit, keeping things brief as we could see her tiring from the effort of being up, being out and being in conversation. Then she asked me, "Do you mind me asking if you ever walked or if you've always been in a wheelchair?" I explained to her that I'd only been in the chair for a year and a half coming on to two years now. She nodded and put that information tidily away.

We wished each other well, she exhorted us to come back to church so she'd have company at the back. We laughed and said that we just might. Knowing of course that we wouldn't.

As I waited for Joe to load the groceries into the car it struck me. She's the first person I am aware of that only knew me as disabled. Everyone else in my life, even casually, knew me 'before and after'. And somehow it bothered me.

It pains me to write this, but I've promised myself to be honest in my blog, there was a growing discomfort, maybe even panic, in my chest. It was like I'd swum to far and lost sight of the shore. The boundaries of normalicy, of the land of the walking, were fading into the distance. I knew, suddenly and irretreivably, that I was never going to be a citizen of that land again. That as much as I am comfortable with this new land and this new life, I had to now give up my passport.

Everyone I meet from now on, will know me as who I am now. Not who I was then. All of this tumbled in on me in the blink of an eye. I got up and helped Joe load the wheelchair into the car and we were off. We waved at her as she came out of the store with her cart and she smiled brilliantly, picked up her cane as if it was a part of her and waved back.

If she can sail so far from shore.

So can I.

So can I.

38

Today is our 38th anniversary. Not bad, huh, that in a world where couples divorce because of a disagreement over which brand of peanut butter to buy, we've made it another year. We've got the day planned. It's a 'guy' anniversary for all the obvious reasons. We're going to one of our favourite restaurants for lunch, we've been going there for years. They know us and greet us as a couple. Then we're going to see "Live Free or Die Hard" at the theatre up here we go so often that they know us as 'those two guys'. From there we're going to pick up fresh veggies at a market we love. Then a quick stop at a beer store to get, um, beer.

Then it's home to make potato salad and grill veggie hotdogs on the grill - which we'll have smothered in grilled onions and peppers. We'll eat on the deck, drink a couple of pints and talk about "Die Hard" like it was serious Russian Literature. That's it. That's the day. The perfect guy anniversary.

We've been chatting about what we were going to do to celebrate over the last few days. And as we talked we've slowly worked out this plan. Now, most of the women I know that I've told about this don't see the 'plan' in it - nor do they see the 'anniversary' in it. But we've never lived our lives seeking approval from others.

What was cool about the day, is that we planned it all. Every bit of it. Without ever once thinking about accessibility and the wheelchair. It just never came up as we talked. It was weird, for a year and a half, every time we wanted to go somewhere we had to check that I could get into the place. Like yesterday, I was a contestant on our radio stations quiz show (out on the first question- Alice Cooper is the answer to all sorts of questions that I wouldn't get) and I get a fairly cool prize, just for participating. Had to check if I could get into the station. Apparently I can.

But we planned the day we wanted. Never thought about the chair until only about a half hour ago. Every single place we plan on going is accessible. Several of the places we're going we've been going to for years. It's cool.

Thirty eight years ago we thought about accessibility, but in a different way. How many places were there that were accessible to us together? How many places turned us down when we tried to rent an apartment together? How many banks refused to give us a joint bank account? How many jobs demanded that we pretend our way through the day? How many family members turned their back on us - never to really look at us again?

We knew what it was like in a world of hatred, violence and murder; in a world of deceit, deception and mistrust; in a world of hypocracy, conspiracy and war to be told that loving is the deepest sin.

They say that coming out to oneself - as gay -as disabled - as different is the most difficult process. This is untrue. Coming out to the world as different and as human - standing face to face with bigotry, toe to toe with oppression while standing shoulder to shoulder with each other, that's a more difficult route. The road that must be travelled.

Today we just want to be an old couple going out for lunch and a movie before going home for beer and bbq on the deck.

Today we acknowledge that some prejudices have been ramped. Some places made accessible. For all of me, for both of us - and for my chair.

Today is our anniversary.

The Letter

"Hey, I know you!" She says it every time she sees me, which is every morning that I'm in the office. She remembers me from when I visited her in the institution before she moved back to the community. I remember her being a tiny little woman with a tiny little aura. She sat staring at a computer screen with no life in her face. She and I chatted a bit about computers, she smiled at me - like it took energy.

Now, only months later, she is bursting into my office. A big bright bold woman with a big bright bold aura. She wants to tell me about some letter. I want to get on with what I'm doing. But I stopped, pushed myself away from the computer - an act I don't even do for Joe, and said, "What happened?"

She was full of a story about getting some letter. She wasn't sure from who and she wasn't sure about what, but it was an important letter. She said that they sent it to her twice. With a few questions she seemed to be saying it was a letter from the institution asking questions. Who knows maybe they are doing follow up. I don't know. She wasn't clear.

That's wrong.

She was very, very clear that she wanted to tell me about the letter. It was very, very clear that this was important to her. It was very, very clear that my asking questions was an attempt to meet my needs by frustrating her. And I understood. I hate it when I'm in a middle of telling a story and someone stops to ask for irrelevant details. I just want to tell the story, have the joy of telling it uninterupted. I did what I tell others to do ... I realized, "It's not about me, shut up."

So she talked about this letter, about it coming twice. I know I'm repeating myself but so did she. Often, at increasing volume and passion. She wasn't yelling. She wasn't 'agitated'. She wasn't in need of anything but getting the emotion out. Not even "meaning" mattered, it was emotion that poured out of her it was her "feelings" that she wanted understood. She was annoyed by this letter. She was annoyed by the questions it asked. And in some way she was frightened by it.

Then suddenly she turned to me and pointed straight at me. "I don't want to go back! I told them I don't want to go back!! I don't like it there!! I stay here!!" She was firm. resolute. A woman who had spent her life on a PRN order was PROUD, RIGHT, NOW. Forceful and complete, she could speak her mind and did. "I stay here."

And the story was over. She grinned and then looked at her staff and said, "I know him!!"

She was gone.

I looked back to my paperwork. Important stuff, I knew it was, I'd been working on it for hours.

And she was why.

The purpose behind the work.

She doesn't want to go back.

She's home.

What it is to have a place in someone's journey. To be an intimate observer into someone else's ride through life. To be able to sit back and watch a woman with few words speak with eloquence and passion and truth. To be here, now, with her.

Tis a privilege what we do. A down right privilege.

Value

I noticed it just a little after noon. Panic welled up in my chest. It was hard to breathe. But I worked to calm myself down. Took some slow breaths. An hour later I was on the phone to Joe, "I think it's back, come and get me right now."

Twice I've face life threatening infections, once the flesh eating disease and once it's cousin a weird form of gangrene. I fought of the first infection suprising the doctors and myself. Everything returned to normal. That was 11 years ago. The second time was a mere 18 months ago, and this time I ended up in a wheelchair and weak as a kitten. Both times the infection started with a little 'tickle' in my skin. A little after noon, the 'tickle' was back. Near the same area as last time.

All I wanted was to get home and get Joe to take a look. He knows how to recognize the first signs of the infection. So do I but it was in a place that I'd not be able to see. (Don't ask, it's not relevant to this story.) Joe picked me up and I left the office. I told no one. I called a couple of friends on the way home to tell them. I needed to talk and Joe couldn't. He just focused on the road wanting to get home quickly.

Then, once home, he touched the spot where the 'tickle' was and I could feel, and he could see, that it was nothing. Probably just the heat of the day. I collapsed almost in tears on my bed. I didn't want that fight again. I didn't think I'd win a third time.

I'm writing this several hours later. Calm has returned to our home. But I want to state something. Last time I got sick I could walk before the illness. I've been in a wheelchair for almost two years now. And I was just as frightened, just as concerned. My life was as precious to me now as it was then.

There are those that think a life with a disability is a devalued life. Well, not to me. I valued it just as much, maybe more, than I did before. The idea of 'death' did not seem as an appealing 'release' from a life of disability. The stereotype of 'a life not worth living' is hereby declared 'crapola'. I am thrilled to be getting up tomorrow and getting going.

Roll on!

Family Matters

"In my day they put people like you in a home. Far away." She was old. Really old. She'd shrunk to the point that it looked like her shoulders were resting right atop her hips. I'd stopped it look at baby clothes in the supermarket while Joe was getting tin foil. I refuse to shop for tin foil. That's a Joe job. So I took my leave of him and went to look for a cute holiday outfit for Ruby who I'm going to see this long weekend.

She came up next to me and was only a little taller than me in my chair. I don't know if she was really looking at clothes - if she was it would have been for her great-great-great-great-grand-daughter. Suddenly she was telling me that in her day I would have been put away somewhere. I was nonplussed.

"Pardon me?" I said politely as I picked up a piece of clothing that could only be described as 'darling'.

"Yes, in my day they put wheelchair people in big homes. Took care of 'em there."

I didn't want this conversation but I just knew that she had come to me to just talk. "Well, we don't do that anymore."

"You work? Got a job?"

I told her that I did. I thought I'd hit her with being a sex therapist for sex offenders- but decided that though she was annoying she wasn't ripe for killing. So I just admitted to being employed.

"Amazing."

"Yes, I guess." Brief, to the point and polite. I was being good.

"My sister's boy was put away. He wasn't in a wheelchair like you, he was just a bit funny. They said it was best for him. Near broke her heart but she wanted to do good by him. She was never the same after."

"What about him, how did he do?" I asked.

She looked shocked. Like her care had only been for what her sister went through. Like he'd been a problem not a person. Like he was gone and truly forgotten. "I have to say I don't know. They didn't encourage visitors. We all just lost touch with him."

"They made a lot of mistakes back then."

"I guess." She seemed suddenly tired. As if the thought of the boy put away had weighed her down. Like his coming to life had taken the life out of her.

"What do you think of this?" I said holding up a little girl summer dress that I thought was cute and a deft way out of the conversation.

"I don't know," she said not paying any attention to the clothes, "why we let him go."

She turned and walked away from me. Not even a goodbye.

I know she was thinking of the boy lost. Her nephew.

I wonder how he is.

I wonder how she'll be.

I wonder why we did what we did.

OUCH!!

Today is a big day for me. Several weeks ago I was contacted by this guy named Vaughan who works for the BBC website OUCH. Firstly, wouldn't it be cool to have a name like "Vaughan". I love those kind of names. "Dave" is an OK name but it's hardly cool. When I first started writing, I was very unsure of myself and didn't want anyone to be able to attach my words to my name so I published under a pseudonym - I thought long and hard about it and came up with a name that I loved - then - but it's embarrassing now. Joe tried to point out that just the fact that my writing was published should have been encouragement enough for me to use my real name, but I would have none of it. Suffice it to say, I never came up with anything as cool as "Vaughan".

The reason Vaughan had written me was to asked if I'd join a team of bloggers to work on the OUCH blog. I almost fainted I was so thrilled. I mean I watch BBC box sets, I may live in the colonies but, my gosh, this is the BBC. I wrote back and said, without hesitation, 'yes'. I don't know much about Vaughan, except that he works for OUCH. Well, I can tell from his emails that he's a good writer, that he's got a great sense of humour, that he's patient with us new bloggers. He's sent me all sorts of stuff. I've got this line of computer type that if I upload to this blog there will be a cool button that will take people straight to the OUCH blog. I have no idea how to do this. I'm hoping that 'blog princess' my friend who got me into blogging will help me do that when we have tea this summer.

Anyways, I don't know if Vaughan has a disability. I'm guessing he does, it is a disability website. But then, does that matter. Once when booking a hotel room with Marriott the voice on the phone wasn't able to guarentee an accessible room so I was shunted over to their ADA (Americans With Disabilities Act - I think) desk. There someone talked to me about my needs, put me on hold, called the hotel I wanted and worked out the details and then came back to me and confirmed everything. Very cool service. I've been shunted over to them several times over the last few months and one guy was very friendly so I just asked, "So, working for the ADA desk, do you have a disability yourself."

Frosty.

"Why do you ask?" The tone was cold. I didn't know what to say. I guess I just wanted to know. In an odd way it mattered to me. I figure that people with disabilities have a tough enough time getting employment - that we'd be completely qualified for a job like working the ADA desk for a hotel chain. So I blathered on about just being curious, that he seemed to really get what the needs were ... yada yada ... I was sweating. I hadn't wanted to offend him. Well, he told me that in fact that he did not have a disability. But did assure me that there were those who worked in that capacity for Marriott that did.

OK, then.

So, I didn't ask Vaughan. I could have gone to the site I guess and tried to find out more about him but that seems stalkerish. I decided that I didn't really care. I care that he's got a great sense of humour and that he's been patient and encouraging with me. That's enough for now.

So, I've got to go over to OUCH now and write my first post. It's supposed to be an introductory 'all about me' kind of post.

So drop by. Sorry, I don't have the button up ... sorry, I don't know the url. But just Google these two words BBC OUCH and it should be right there.

See ya over in England!

Pride Day

At first everyone thought it was cute. I'm angered by this description as I hear it for the first time. A woman with a disability develops a crush on her instructor at the sheltered industry and it's 'cute' maybe even 'sweet', let's all say 'ah'. When a person with a disability has a 'crush' it's never seen as deep, or serious or, God Forbid, real. I am called in to discuss what to do because they think it might have been handled badly.

OK, deal, I'll be there that afternoon.

I meet with the supervisor who tells me that they first noticed that Tamblyn had a crush on one of her female instructors when they'd see her during the work day stopped and just staring at her. Then little gifts began. Nothing expensive. A can of Pepsi. A bag of chips. Just tokens really. Janet came forward at that point and asked for advice. She was told that Tamblyn was just going through a phase and to just ride it out, do nothing to encourage her.

"Janet? She had a crush on Janet?" I asked startled to hear her name.

"Yes, why?" They asked.

"No reason, I'm just a bit surprised." And I'll admit at that point I was also a bit relieved. I knew Janet. Personally. She and her girlfriend and Joe and I used to go out for Indian food together after work, occasionally we'd gone to the movies. Janet and her girlfriend were both deeply in the closet, terrified that someone would find out about their relationship. They were young and times were very different.

"At least," I thought to myself, that Tamblyn had a crush on someone who would at least be gentle and understanding. So I relaxed a bit and let them finish the story.

"Yesterday," the supervisor told me, "Tamblyn came to work with a card. She slipped it into Janet's desk. When Janet found it she brought it directly to me." The supervisor then got up and found the card and handed it over to me. It must have taken Tamblyn hours to do. The card had a great big heart on the cover, drawn carefully and coloured in beautifully. Then when openned the card had a drawing of Tamblyn and Janet lying together naked. There was nothing subtle here, Tamblyn was sexually in love with her instructor.

"So what happened, how did you handle it?" I asked.

"Well, I thought," said the instructor, "that I'd call them into the office together and that Janet could tell Tamblyn that she couldn't take the cards or gifts because she was an instructor. That they couldn't have a personal relationship because Janet was like her teacher. You know, the basic stuff."

I winced, "I knew it had to be done, but I knew that Tamblyn would be so hurt. Even in the most kindly hands rejection in a knife that always cuts."

"But Dave, I couldn't have imagined that Janet would have reacted like she did. When Tamblyn came in and sat down, it all started OK, Janet explained that there couldn't be a relationship because she was an instructor and Tamblyn was a client. She said, that the card made her really uncomfortable and Tamblyn had to stop."

"Tamblyn started to cry and said, 'But I love you.' Suddenly Janet went crazy on her. She told Tamblyn that her feelings for her were 'sick' and 'disgusting' that she would never have a relationship with another woman. She even said that Tamblyn would go to hell for feelings like that. Tamblyn crumbled and started to cry. I've never seen anybody weep like that before. I tried to intervene. I yelled at Janet to stop, but once she was going she couldn't stop herself. Tamblyn is devastated. Janet's still upset."

I shook my head, why would Janet, of all people do this to another person. Janet who understood homophobia, who had told a horrific story of her parents finding out over dinner just a few days ago. How could she have done this. "Could I see Janet first?" It took a while to convince the supervisor to let me see her alone, but in the end she relented and allowed me to talk with her staff in private.

Janet came in looking angry. I asked her what was going on, "I can't believe what Tamblyn did to me. She has everyone questioning why she had focussed on me. The other staff even teased me and called me "Jumping Janet the Leaping Lesbian" (whiched I guessed was a referrence to Janet's membership on a women's basketball team). When she gave me that card I was terrified that someone would blame me, or think I lead her on, or God Forbid that I'd done something with her."

After she calmed down I told her that I was shocked that she would have been so violent in her reaction to Tamblyn. Then Janet started to cry. "I sounded just like my dad, I told her she was sick and disgusting.' It was the first thing that came to mind. I just wanted to make sure that the supervisor didn't suspect anything about me. I just can't have people finding out.

Then I met with Tamblyn. Luckily I had always liked her, always joked with her when I came into the building. She came in as described. Her love had been crushed and so was she. As we talked I could see she understood that Janet was an instructor and that it wouldn't be ok to have a relationship with her.

"Do you think I'm sick and disgusting."

"No, I don't, and Janet doesn't either, she was just upset."

"I know that she does, she was so mad at me."

I called Janet in. I filled her in in such a manner that she had no question about what she was to do. "Janet, Tamblyn understands that you are an instructor and that there can't be any relationship. But she's wondering if you really think that she is 'sick' and 'disgusting'. I think you'd better explain how you were just surprised and you reacted badly. Maybe even an apology would be in order here."

Janet looked at me with loathing, I knew there would be no more friendship. I didn't care.

So she did as asked. She told Janet that she got scared that people might talk and that she didn't want anyone thinking that she was 'like that' or that she had encouraged Janet. So she lost her cool. "Of course I don't think you are sick and disgusting, I should never have said it."

Tamblyn smiled weakly and left the room.

Days later Janet had left the workshop and taken a job out of service to people with disabiliites. A decision I welcomed.

Today, in Toronto, is Gay Pride day. As I type this thousands of people are getting up and gathering for the day. Difference does need to be celebrated. Janet was not a cruel person but she was frightened that she'd be discovered as 'different'. A discovery that terrified her. Tamblyn had reached out in exploration of feelings that she didn't understand and met with a violent response. Had Janet felt that she worked in an environment that would weldome her as who she was - if her workplace had been as holistic with her as a staff as it wanted to be with Tamblyn as a client, things might have been different.

I'll watch the parade on television. Hopefully the camera will catch Tamblyn as she walks in the parade, I think this will be her fourth year. She looks forward to it all year.

The agency has changed.

So has Tamblyn.

There's something truly to be proud about today.

Passion

I felt fraudulent. Almost like a liar. But I discovered something.

Three times on this trip last trip I have been approached and asked a question. Each time it happened, it was a quiet moment. Each voice had some pain in it, pain that hinted at a story untold. Each question exactly the same. "How do you manage to keep your passion for what you do?"

This is such a hard question to answer. Though words often come easily to me, expressing things that are about such a deep part of me is very difficult. So I give answers that are true, that I believe, but that are only a few inches deep.

I talk about how, in a single generation, people with disabilities have gone from being idiots and morons to neighbours and friends. I talk about having been there at the closure of one instituion and now looking at the closure of several more - about how well people have moved home. I talk about the daily joys outweighing the momentary frustrations.

It's all true. But passion doesn't spring from such as these. It's a deeper fire. And I didn't know how to answer. Each of the three smiled and thanked me for my time, they had come to me famished and left still hungry. I knew that. It's hard disappointing someone, but I didn't know what to say, how to describe it.

Then, Camrose. We checked into the hotel and then went in search of where I was to present the next day. Another hotel. Another lecture. I knew something was wrong when I asked Joe what the topic was the next day and he told me that the file with times and topics was downstairs in the car. He offered to go get it. I told him that it could wait till the morning. He looked surprised, but he also looked relieved, and that was that.

I never, ever, ever, go to sleep not knowing what the next days lecture was to be about. Even though I've done them thousands of times, I mull them over in my head through the night, I kind of marinate in the ideas. But I broke routine. As it turned out the folks from Camrose were absolutely wonderful. They were welcoming. Wildly caring about what they did. Wanting to look at themselves and their service carefully and critically. I pulled so much strength from them. That done, we headed for Calgary.

Calgary has loomed large in my mind for a long time. This was the last stop on the lecture trail for the summer. With one exception I am home for two months. It's not that I'm not working over the summer. I'm teaching summer school here in Barrie and working down in Toronto at the office ... but I'm not hauling butt around the globe talking, talking, talking. So Calgary mattered.

The first day in Calgary was fine. I met with the organizer, who confessed to being a groupie - who could quote my training tapes that she uses in staff orientation and training even down to the tone of voice and inflection on words - she was funny and cool. When the day ended I felt it. The end was in sight. One more day. Just one more day.

Yesterday I rose to a sense of no purpose. I didn't want to do the work. Didn't want to do the day. I was exhausted from the travel, tired of the words and sorry for myself. I kept shaking myself. I had been given a wonderful audience here in Calgary. They were so alive. So willing to learn. I felt unworthy of them.

In the little lecture hall, I began the day. The words were coming out of my mouth, I was caring about them. But a couple of times, right in the middle of a story, I'd be thinking. "I'm not going to make it. I can't do it." But I'd buck up and continue. Even on the home stretch the day seemed long to me. I saw Joe up in the corner of the room. He was laughing. This was a good sign. When things aren't going well in a lecture he has a look of real concern on his face. His laughter relieved me, it was ok, it was going to be ok. I was going to make it.

Suddenly, I knew that in order to make the finish line, I was going to have to dig deep. I smiled inwardly and realized for the first time that sports heros when asked about their stamina and determination are reduced to stock phrases like, "I just dug down deep." "I just tapped into my reserves." They were trying to explain what it was to stoke the bodies furnace and the minds passion, and like me, failing.

Then I had to do it. Dig down. Deep.

And I understood, really for the first time where it all comes from. What I should have said to those who asked.

I'm sorry it's not prettier.

I'm sorry it's not deeper.

How do I keep my passion.

"By knowing it matters."

WOW

Four more. Four less.

I just got an email from my boss that when I get back we have to put together a proposal to provide support for four folks returning from an institution to live back in the community.

Wow.

And I thought next week would be catching up on work that I've fallen behind on because of my travels and instead I get thrown this. How entirely cool.

I remember the early days of deinsitutionalization, making an individual from an outcast. Finding places where people could find home. Places where the could step out side and learn to dream bigger dreams.

Wow.

I know that there are going to be hours of typing, talking, planning, reading, studying, researching. I know that I'm going to take an exhausted mind and apply it to a complex task.

Other agencies will be doing the same thing, but oddly it isn't a competition. It's more of a 'this is how we think we'd provide the service' ... 'this is how we'd welcome them home.' So that's what'd going on next week.

Wow.

The privilege of planning to bring someone home. Someone who, because of history, because the idea of freedom and community were not yet even uttered - was lost to socity - is now to have the opportunity to learn a new set of skills.

How to be happy AND free.

Wow.

Four more free. Four less caged.

Being OUT

Shopping yesterday in Camrose, I was enjoying being out and about. I didn't tell my hosts in Camrose that the day I arrived I was feeling just on the edge of the flu or a seriuos cold. I drank tea and went to bed with a prayer that I'd be up and ready in the morning. As luck would have it morning dawned gently and I was ready for the day.

After work I even felt like doing a bit of shopping so we hit the Superstore and looked for something for dinner with the idea of shopping for a few things for friends afterwards. I noticed a little girl in a wheelchair looking at me, intensely. She wasn't doing that gobsmacked kind of stare that I get from a lot of kids, she was just really intense. I suddenly felt responsible to her in some way.

When Joe came over I joked with him a little louder than necessary and we both laughed.

See, kid, you can grow up and laugh.

Job, done, I knew she noticed. I pushed myself with more spritely energy than I felt that I had. I've always been good at turning my chair on a dime. A result of being on so many hotel elevators. So when I got to the aisle I wanted I was going a good speed, I grabbed one wheel and with a whoosh, turned the corner.

See, kid, you can have fun in the chair and even do cool moves.

I waited for Joe as he went to check to see if the store hand a particular product and I noticed that the little girl and her mom had moved to another part of the store. Still in sight, but busily doing their own thing. I smiled at my little 'performance' for her. We'd finished food shopping and Joe decided to puchase the groceries and then come back to join me in the other part of the store. Clothes and electronics and gift type stuff. Out of the corner of my eye I noticed mom and child coming. I pulled my wallet out of my pocket and handed Joe two twenties for the groceries. He looked at me oddly but took the money, who wouldn't.

See, kid, you can have money and spend it the way you want.

Then they were gone and we went about our business in the store. I don't know why I felt so good about what happened. I know she noticed me, but I don't know if she noticed, the laughter, the independance, the money ... I hope so.

She's not my kid but she's part of my community. I have a responsibility to her. I'm proud we are part of the same movement and that we share a way of being that brings us commonality. I hope she went home with more than just a few groceries.

Who knows?

Funny HAHA

"That was not funny!" she glared at me.

"What," I asked astonished that she was speaking to me. The only thing we had in common is that we were sitting in the same bar. Joe was having a beer and I was quietly sipping on a tea. The bar television was playing some sports game with the volume up. Sports bore me. I glanced at it every now and then during the commercials.

One commerical caught my eye. It was for the 'reality series' "last comic standing." I like the show, I don't see it as the 'eat fried worms to win a million' kind of reality show, it's more of a plain old talent contest. Besides they've had fat comics, disabled comics, hell they've even had white comics. It's fun. So I pricked up my ears to hear more about when it started.

They were saying that they were touring the world to find comics this year and then showed an Auzzie delivering the joke, "The doctors said my friend was unstable. They think he needs psychiatric help, I think he's unstable because he's got only one leg."

I belted out a laugh. That, to me, was funny.

The woman at the bar swung her chair around, saw me sitting in my wheelchair and told me that it wasn't funny. That comics shouldn't make fun of crippled people. This woman was giving me a lecture on disability humour and she used the word 'crippled'!

I was calm, "First, the word is disabled, not crippled, and that joke was just funny."

She shook her head sadly and told me that I was obviously a self loathing kind of cripple if I found anti-cripple humour funny.

I gritted my teeth, "The word is disabled, not crippled. And it WAS funny."

"I have a friend," she said, "In a wheelchair and he uses the word cripple all the time. He says that using the word takes it's power away."

"Umm, lady, he can say it, I can say it, but you can't. AND the joke was funny."

She shook her head sadly at me then swung her chair back having finished with me.

I rolled up to get back in view, "I don't need your permission or the permission of any frigging (that's not the word I used) walkee to laugh at a joke."

Grrrrr.

I'm still upset. Not that we disagreed on the humour but that we had the converrsation at all. Who did she think she was, telling me what I could laugh at regarding disability humour.

NOTICE: DISABLED PEOPLE DO NOT NEED PERMISSION FROM ANYONE TO LAUGH AT OURSELVES OR OUR DISABILITIES. AND, AND, AND CRIPPLED IS MY WORD, NOT YOURS. YOU'VE HAD IT LONG ENOUGH, IT'S OURS NOW.

And the joke was funny.

The Pledge of Personal Power

Several months ago I was in Wisconsin doing a workshop on rights for people with disabilities. I wanted to do up some kind of 'pledge' that people took - a way of confirming a desire to be heard and to be an adult. I took a stab at drawing up a Pledge of Personal Power. It went OK, but left a lot to be desired. Now coming out to BC for two sessions on rights, I pulled it out and worked on it some more.

All writers want their words to have meaning to others. I tried to write something for self-advocates, in plain language. I tried to write what I thought needed to be said. So, I ended up with a page of crossed out words, filled in words and completely blotted out paragraphs. I ended up with something that I thought might work.

In Kamloops we did the new version by standing, those that could, placing hands over hearts and reciting a kind of Pledge of Allegiance to Myself. It went well. One woman cried as she said the words. Then again in Prince George, with a couple more adaptions, it went well, with line ups of people with disabilities asking for a copy. I promised to make it available to everyone. So, here it is ... feel free to use it, or not, just put my name on the bottom as author. As you read it, imagine almost 200 people with disabilities standing, hand over heart, reciting together as a collection of individuals as a united fellowship. Imagine all those voices, together ...

The Pledge of Personal Power

I am me.

There is only one me.

I am the same as everyone else.

I am different from everyone else.

Do not disrespect me.

Do not bully me.

Do not abuse me.

My body is my own.

My mind is my own.

My heart is my own.

I will stay

Protected

Powerful

Proud

When I choose to, I will say 'yes'

But when I need to

I will say ... No! Back Off, Leave Me Alone

I will take care of myself.

I will take care of everyone here.

Times Two Beautiful

After a seven hour drive we were exhausted but in fine spirits. The drive had been through the Rockies and with every corner was a new view an exciting vista. Joe did all the driving because I have vertigo and a wee bit of dizziness isn't something you want when all that keeps you from pummetting hundres of feet is a wee barrier put up by the government to make you feel good. When we pulled into the hotel, the driveway was blocked by a caravan of limos.

Surrounding the limos were what seemed like hundreds of young women is prom dresses. They all looked like escapees from the Wilkes BBQ in Gone With The Wind. The young men were all in tuxes and did various things to try to make themselves stand out. Some had their hair frosted in odd colours, a couple had facial hair cut with zigs and zags. To a one they tried to be singular, be noticed and above all be beautiful.

Part of me felt a little saddened. To be beautiful some of the girls looked like they hadn't eaten in a couple of months just to fit into their prom dresses. A couple even looked like they'd topped their breasts up with the air hose at the gas station. The guys too were very concious about how they looked and glanced at their reflection in the window just as often as the girls did. Many were topping themselves up with drinks from little silver flasks kept in their pants pockets.

All well and good, but how were we going to get in? One of the limos was parked right in front of the ramp to the hotel. I waited as Joe went to check if we could get to our room by entering somewhere else. Then I was noticed by a woman I'd over looked. She was stunning. But wow, what she was wearing really stood out. She wore a simple shift (forgive me I don't know fashion and am having a tough time here) over black knee length trousers. Nice, but hardly in the 'Will you eat Bar-b-que with me Scarlett?' category.

At first I thought that she was a sister or a friend of the promettes, but no, she was included in all the pictures and very much a part of the group. When she noticed me, it took her only seconds to see the problem. She smiled. God, she was spectacularly beautiful.Then she went over to the limo and slapped twice on the back window. The driver poked his head out, bored. She spoke to him briefly pointing over at me. He glared at me, annoyed he'd have to move. But he started it up and got out of the way.

By the time Joe came back out the limo was out of the way and we could easily get in. As it was a bit uphill Joe got behind and helped me up the ramp. As I went by I thanked her for her intervention. She nodded and went back to her party friends.

Her buddies had spent what looked like thousands to stand out. She managed to do so without spending a cent.

Chantal

The table was huge. It looked to be set for thirteen or fourteen people. I was glad that we got there early and hoped that we'd be gone before the group arrived. The waitress was one of those quick, friendly types who should be put in charge of training every other service person in the world. We settled back to drink our tea and wait for the food to arrive. I like quiet breakfasts so we always head down eat early. I was also about to do a session at the conference that started at 8:30 so I wanted to be fed and watered in plenty of time to get over there and get set up. I don't use any kind of audio visuals so getting set up is just getting in the room, getting my notes out and waiting while worrying. Fretting is such a useful way to spend time.

Before long the people started to arrive at the long table. The first guy I recognized from my session for self-advocates the day before. A fortyish guy with Down Syndrome. He waved when he saw me and said hello. His speech is far from clear but over the years I've gotten used to a variety of disability accents and I found him fairly easy to understand. In minutes there were six or seven people there at the table. A few minutes more and the table was full. Maybe one or two care providers at the most. The table was lively with laughter and discussion.

Our food arrived and Chantal, our waitress, headed over to take the order from the large table. Forgive me but I thought to myself, 'this will be fun to watch.' But it wasn't. She just took the order with efficiency and common sense. Several people had unclear speach but all she did was repeat what she thought they said, like she had with us, and when they nodded she wrote it down, when they shook their heads, she asked them to clarify. Some pointed at the menu, others had people order for them. Chantal went from person to person and communication mode to communication mode like she'd done it a thousand times before.

She managed to make everyone feel welcome and everyone feel competent. She had a natural grace about her that left people smiling in her wake. What a gift. I remember at church years ago taking a course taught by the pastor on 'discovering your gifts' and as all of us sat there in the class he went over the biblical gifts. The gift of 'hospitality' brought giggles of derision from all of us in the group. No one wanted that gift. What a wimpy gift. The gift of prophecy, or the gift of leadership, now those were gifts with muscle.

How wrong we were. Here was Chantal, with a biblical proportioned gift, who made the world kinder and smoother for those she came into contact with. When she brought us our bill I wanted to say something to her but everything that came to mind sounded goony. So instead I spoke to her manager, filled out a comment card and decided to write a blog about her.

I know that I do not have the gift of hospitality. But I'm glad that people do. I'm glad that Chantal does. Because, though she probably won't be remembered by many at that table, she made the day begin well for a group of people with disabilities. She bolstered the self confidence of some, the self esteem of others, God bless her.

the next day

I'm sitting in a hotel in Edmonton. I'm up early. I can never sleep in on days I have off, that's something that my body wants to do on days I have to be up early. I live with conflict! As the room is quiet and as I wasn't able to connect to the web for some odd reason, and I didn't want to turn the lights on to read because Joe is still sleeping, I was at a loss.

With nothing else to do, I simply thought. The last few days have gone at such breathtaking pace that I haven't had the time to absorb all that went on. For two days in Kamloops and for an afternoon in Prince George I talked about rights with people with intellectual disabilities. In all, I would have been with over 200 people. As always happens, while we had fun, we laughed a lot, we also worked, hard. As each person put their hand up and talked about rights that they thought were important for people with disabilities, it would be written down, discussed and then we'd move on.

But this morning, some of them were coming back to me. Little snippets of memory. Images that now I could focus on. In the slowness of the morning, I could finally hear what people were saying.

One person wanted to write down "The right to have faith and practice your faith." There was discussion around care providers refusing people the right to go to church. Or forcing people to go to church. The freedom of religion, a basic human right, was being discussed in front of my eyes. My ears heard the words, but now, I get the implication. There is a loss of citizenship when people enter care. They become denizens of another land, a totalitarian state where others who 'know better' make decisions for you.

Another, "The right to talk on the phone without being listened to or montored." Even when writing this one down I was thinking 'what'? Many nodded, all agreed. The right to contact the outside world, without big brother listening in, taking notes, setting parameters of discussion. It's important to say that the person who said this was sitting quite calmly and appropriately and very definately without staff presence in the session. I say this because I know some reading will be thinking 'well sometimes we have to monitor calls because of a clinical issue, like a history of obscene or threatening calls' and I agree, that happens. But it's rare. Much rarer than the heads nodding yes in recognition of the issue.

The one that strikes me now. "The right to have rights." This has never come up in a rights session before and when we were talking about it I missed the point. They had talked, in the same breath about people not being able to read and therefore not knowing about their rights. That's what I heard and that's what I focussed on. Now in my memory I can see their faces looking at me, in disappointment. Of course they wanted all to know about the rights as written in the session.

But they wanted more too. They wanted to be understood as a 'people' as an oppressed minority as those whom the world considered below rights, underneath responsibility. They wanted to be seen as worthy of having the same rights as others, they wanted to move into the human community and be considered as members of a just society. It's all coming together in my head now, the woman waving her hand and talking about the surgery performed on Ashley. She wanted 'the right to grow up' written down. She wanted it to mean both emotionally mature but also to be allowed to grow with out surgery to eliminate adulthood. Another, wanting the right to love - without intervention of agency, of family, of state. It flew so fast about me that I missed it. The underlying message ....

WE THE PEOPLE WITH DISABILITIES DEMAND THE RIGHT TO HAVE RIGHTS.

To no longer be denied a voice as a person and a voice as a group.

It's an honour to do what I do and hear what I hear. I just wish, sometimes that I could hear in the moment, rather than during a quiet moment the next day.

His Hand

I couldn't take my eyes of his hand.

I mean, I knew, but still ... it shocked me.

The first thing you notice about Dale is that he has Down Syndrome. Talk to him for just a second and suddenly what is obvious is no longer all that important. I hadn't seen him for awhile so when he came into the BCACL annual conference here in Prince George I called him over. He's great to chat with but man, oh man, did he have a lot to say.

But, no matter what he had to say, it was tough pulling my eyes away from his hand.

Have you ever got one of those Christmas letters that left you feeling entirely inadequate. Well, that's what I felt like when listening to what he'd been up to. He told me about the Alaskan cruise he'd been on. About becoming involved with the Canadian Down Syndrome society and travelling on business for them. About meeting a famous actress and being invited down to L.A. for a wee visit.

But did you see his hand?

Then he told me that he was learning to add humour to his talks and was going weekly to toastmasters to practice his timing. He said that he was in the middle of reading a book on public speaking that he was enjoying and that he recommended to me. This guy was one surprise after another. A vital young man with a passion for life and a passion for his cause. Awesome.

But his hand.

His left hand to be precise.

To be even more precise, the ring finger on his left hand.

There is a gold band around that finger.

I knew he was married and I asked him how long he'd been married. He told me that he was coming up on his 10th anniversary.

10 years.

The gold band obviously meant something to him.

I realized as I was talking with him that I'd never seen a wedding ring on the hand of someone with Down Syndrome. I'd heard about them. Read about them. But it was all abstract. But there he was, Dale, talking to me with animation. His hand flying around as he described something. And when the light hit his ring it glinted gold.

We finished our chat and he headed off, as always with purpose in his step.

And a ring on his finger.

The dawn is come.

the bride

The role play had people in stitches. Two people with disabilities were playing the part of a couple telling her parents that they wanted to get married. Joe in the role of father was protesting that in no way would he support the marriage. The goal of the role play is to help people stand up to parents about love and relationships. They were going at it. She was demanding to be heard and Joe was shouting back. Suddenly Joe made the point clear.

"No way will I walk you down the aisle."

The woman with a disability came to a sudden halt. She covered her face and said, "That's exactly what my dad said. Exactly what he said to me."

She saw the look on Joe's face - horror that he'd brought a painful memory back - and she said, "No, it's OK. I just can't believe you knew what my father would say to me."

I asked her if she wanted to continue the role play and she was in for a penny in for a pound. So we went back to it and soon the room was exploding with laughter again as we dealt with a sensitive issue with humour and good will. The room was egging her on, wanting her to win the debate. Which, of couse, she did. When it was over, Joe reached out and touched her arm and I heard him say softly to her, "If I was your father, I would have been proud to walk you down any aisle, anywhere." Not for nothing is this guy in my life.

"That was a lot of fun." She said, having forgotten the intrusion of real world pain into a fun day for her.

"I'd like to do something, if that's OK with you," I said to her, flying by the seat of my pants - which is typically how I travel through my life. She agreed so I had people clear and aisle way through the front of the group. I asked her to take Joe's arm and suddenly she knew what I was going to do.

"Are you going to have me walk down the aisle with Joe playing my father," she asked incredulous.

"Yes," if you want to.

"I do," she said quietly.

I asked the group to hum the wedding march and the whole group joined in as the two of them walked together down the aisle. When the got to the end the room erupted into applause and she tipped her head back and laughed. A big throaty laugh. Unencumbered with pain, just a laugh of pure joy.

Joe was oddly quiet as we drove away from the day. I asked if he was OK. He is a man who likes to think there is only good in the world. He knows from our work together that that is not true, but while I look at the dark, he always sees the light. To have stood that closely to her painful memory would have been hard for him. So I was concerned.

He considered my question for a second.

"It shouldn't have been me," he said, "and it shouldn't have been pretend."

But it wasn't pretend. It was very real for everyone in that room. They all knew and understood what had happened to her. They all know what it is like to be victims of prejudice from society but even worse they know what it's like to hear prejudice come from the mouths of parents, siblings, care providers. They all wanted to be there with her and for her. It wasn't prentend at all. Something very real happened.

There is nothing more real than prejudice.

And nothing more real than pride.

Fire!

Under 30, they are kids. Under 20, they are babies. And they should behave themselves.

The fire alarm clangs waking us up from a sound sleep. We look at each other knowing exactly what had happened. Checking in we noticed that the hotel was full of teens. Oh rah. Fire alarms will go off and they will run through the hallways at all hours. We'd actually predicted it. I was closer to the phone so I picked it up to call front desk. I was informed that we needed to come to the lobby until the fire department had located the fire.

I've been travelling for years and I never, never go down when there is a fire alarm going off. I've never smelled smoke and it has always been a false alarm. I know I'm playing the odds. But this time I was on the first floor overlooking the parking lot. We could just hop out the window in an emergency. Besides, there were teens in the hotel, isn't that information enough. I told the clerk that we would just wait it out in the room.

She became agitated and demanded. That's demanded, that we come to the lobby. I immediately agreed thinking that maybe there was something else going on.

We had to get up.

Get dressed.

Assemble the wheelchair.

Get out the door.

The alarm stopped just as we were about to leave. I called the desk again and she said that we still had to show at the lobby. So, we did.

We were one room away from the lobby so we were there in minutes.

Alone.

Just us and the hotel staff. No one else had come to the lobby. No one else had to put in a demand appearance.

It's cause I'm in the chair. I knew it instantaneously. I wasn't allowed to break the rules like every other sucker staying in that hotel. I wasn't allowed to just roll over, curse the teens, and go back to sleep. Nope. Cripples need to follow rules. Do what they are told. I was mad.

Joe knew it and just whispered above me. "They won't get it. Let it go."

I looked at the faces of those behind the desk. Those who had used their power with me because they could and left everyone else alone - because they knew they'd be told to stuff it. They had a look on their face, when they looked at me, that I'd seen before. A thousand times. On the face of staff who made people with disability follow rules that they, their children, their children's children knew but didn't follow.

So there I sat, disgruntled, tired, pissed off. What was there about the state of being disabled that turned others into 'I know best, I know better' power hungry desk clerks?

When did I turn into the compliant, do what you are told, disabled guy?

Well, I haven't.

Now that I know what they are doing - I'll know how to respond.

I'm not giving into that kind of petty tyrany.

Lookout desk clerks, the decision will be mine, not yours, from now on.

I have become a behaviour problem because I just figured out the rules and have decided not to play.

Community Living

It's a standard part of the presentation. The audience was made up of people with disabilities from Kamloops although some had come from 100-mile-house a town a couple hours away. Today we were doing two different workshops, abuse prevention in the morning and understanding rights in the afternoon. During that workshop every person gets to answer the question 'who would you talk to if you had uncomfortable feelings'.

I like this part of the workshop because Joe takes over and he and one of the participants goes around and asks the question of everyone. As Joe and his assistant went around asking, I was hit by a memory. I've done work for the Kamloops Society for Community Living several times over the years and this was one of the first places I ever did the abuse prevention workshops for people with disabilities.

Looking around I could easily identify four or five people with disabilities who I knew were there in the early days of my attempting this training. They'd aged. I'd aged. Yet here we were all going through this again. It was a nice memory and a nice feeling. But then a word caught my ear ..."

"I think I'd talk to one of my kids."

This was followed by ...

"I think I'd talk to my husband."

"My best friend."

"My girlfriend."

"My fiance."

"My family."

One woman paused, thoughtfully giving the question due consideration. She lifted her hands and started counting off on her fingers, "I could talk to my mother, or my best friend, or my boyfriend, or my sister ..." and on she went. She used up almost every finger making the list of those she could talk to. Wow.

By the time they were done the question, "Who would you talk to if you had an uncomfortable feeling?" was answered with the word, "staff or helper" only twice. Forty people and only twice did care providers come up as an answer. This is a shocking changed. I talked with Deb Steele afterwards and asked if she noticed the list of people who were given as possible 'helpers' should life go wrong. I asked if she noticed how 'normal' that list was. I asked if she remembered the day when 'staff' was the only answer given.

The fact that staff were not given as a first choice is not a condemnation of service provision at all. It doesn't mean that staff aren't doing their job. It means that staff are FINALLY doing their job. Facilitating relationships, building networks, developing connections - who rah - these were people with disabilities who had lives deeply imbedded in the community.

It seems feeble to only be able to offer a bit of praise ... 'good job all' but it's all I have to give that's meaningful.

GOOD JOB! WELL DONE!

hurt by big turk

Since becoming disabled coming on to two years ago now, I've been coping well. Or so I thought.

I've been managing with the wheelchair and all that comes with it - curbs, attitudes, platitudes and both kinds of stares. Yep, I have no compunction about going out 'there' into the real world and getting done what I need to get done. I've been coping well. Or so I thought.

Making reservations for hotels and getting them to understand that 'accessible' doesn't mean 'being able to get to it' it means 'being able to use it' - that's old hat now. Talking to airline representatives to ensure that they understand what needs to happen and making it clear that when my wheelchair comes out of the belly of the plane it comes to me, not to baggage handlers. got it down pat. I've been coping well. Or so I thought.

With rare exceptions I have learned to speak up for myself when treated unfairly or in a discrimitory manner, and to do so with both force and dignity. So up until Friday night, in a hotel gift shop in Calgary, I had thought I was coping well. I thought wrong.

I rolled in to the gift shop to get some post cards, some pop for the room and to see what other novelties were interesting. And there, on the bottom shelf, it sat. If you had an ear placed on my chest you would have heard my heart crack. Pain shot through me, I handed the cards to Joe who was carrying the pop and swung round and left the store to be alone for a minute.

As beautiful as I remembered. And the memories were grand, stunning. I felt, for the first time in months, consumed with desire for my old life. My life ... before. Even so I had a decision to make. I swung my chair back round and looked at where it was. My face calm, my soul howling in despair - I decided to just go. Go back to the room. Leave this place of temptation.

So I left it there "Big Turk" the worlds best chocolate bar. The one with the rich chocolate on the outside and the odd purple filling on the inside. The chocolate bar that you ate with the sensuousness of foreplay. The chocolate bar in the red and white wrapping with the name BIG TURK in bold on the front. They are hard to find, these siren song singing succulent savories. I haven't actually seen one since being in the hospital dually being diagnosed with diabetes and fitted for a wheelchair.

Steadfastly, I've avoided chocolate bars, not having one since that day of diagnosis. NOT ONE. But I can avoid OH Henry and MR. Big ... they never meant much to me. It was Big Turk that I fell in love with. Bought a wack of whenever I found it. Savoured them knowing that it would always be awhile before I found them again. Rare exotic treat, that's Big Turk.

I went to my room and pouted. We had some sugar free cookies but really, no matter what anyone says, there is a profound difference between masturbation and sex. There is no substitute for Big Turk. No way to get around the loss.

So I checked my blood sugar in the morning and it was a little high.

I had thought having an affair with BIG TURK.

And was punished.

number 17

"I don't know how to stop abuse in agencies serving people with disabilities," Sobsey said in his workshop in Toronto on that issue. "But I have some ideas for things we can do," he continued. Then he gave just over 50 ideas for what we as individuals can do to make it less likely that abuse will happen.

As I had his powerpoint presentation photocopied and tucked away in the bag on the back of my wheelchair, I could just sit back and listen, think and then absorb what he was saying. I'd already had several 'ah ha' moments when the powerpoint projector moved to Sobsey's point number 17. When it appeared on the screen, my mind read it and read it and read it again. Before he said a word about what was written there I was taking in the huge implication of those words.

"The single most important thing that each of us can do is control our own behaviour."

Luckily Sobsey has a low key way of presenting his material because much of it would knock an audience reeling if he pitched too hard. This section of his presentation asked each of us, as I ask you now, to understand that every single one of us has moods and moments, thoughts and impulses that given free reign could turn us into an abuser.

The difference between an abuser and a non-abuser is not how we think or feel, it's that non-abusers manage to control their urges, stifle those moments. Thinking about slapping someone is not crossing the line, slapping someone is. If we want to stop abuse we begin first with ourselves. We begin by examining who we are, how we think, and learn to begin to reshape our natural impulses, to guard against those moments when we are angered or overwhelmed.

The end of abuse is located in our own mind our own body.

This is powerful stuff.

This is hopeful stuff.

This is difficult stuff.

After the presentation, Joe and I drove Dr. Sobsey to the airport and as luck would have it we were flying out at about the same time. Dick was flying to Edmonton and we were flying to Calgary. Our flights were to take off from adjoining gates. We had several hours more to simply chat and have dinner.

When we arrived in Calgary, I waited in the baggage area as Joe went off to secure the rental car. I was pushing myself by the baggage carousels - by the by, Calgary has one of the nicest airports in North America and even the baggage area is cool - headed towards where Joe and I would meet. A man approached with an odd gait and a big, big smile. As he saw me he gave a big wave. At first I thought we knew each other and that he had recognized me. This does happen, in Toronto waiting for our flight I ran into a woman who had heard me present in British Columbia.

I was about to wave back when I got it. He didn't recognize me. He was ... um ... odd. When I was close enough I did my quick assessment. Disabled or 'slightly off' and in an instant I could see that he was 'not quite like' everyone else but that he didn't have a disability. Inwardly I groaned, cast my eyes away and wished that I wasn't a magnet for 'those kind of people.'

Suddenly, instantaneously, I remembered ...

"The single most important thing that each of us can do is control our own behaviour."

I forced my eyes back and picked up my hand, I couldn't believe the struggle that was going on between mind and body, and waved back. My lips formed into a smile. His smile broadened at the acknowledgement and walked on by.

I didn't hurt that man yesterday.

Because I controled myself.

What power.

Inappropriate Pride

I shouldn't feel it.

I shouldn't say it.

I certainly shouldn't write it.

But I'm going to.

Yesterday at Dick Sobsey's presentation about how to create safe places for people with disabilities to live and work, Vita's Personal Development Committee made it's public debut. Several weeks ago we met and I asked them to prepare to present at the Sobsey conference and they did as I knew they would, they greeted the challenge with enthusiasm and determination. An amazing group of staff.

The main reason I am working at Vita is to be part of a process and to observe a process of an agency going through changes to actively become a Safe Haven for those in care. I spent two months reading the literature and then coming up with what is simply called, Vita's Process for Change. From there it's been slightly over a year that we've made change after change after change in the agency. It's like we have shone a light on every aspect of our service and asked simply, can we make this safer.

One of the things we did was create a team of dedicated staff that work together, but with focus on three areas. Relationship Training, Abuse Prevention Training and Self Advocacy. We interviewed, then hired, then trained staff. Some (1) came from management but the rest comes from Vita's front line. Then they set about doing the work. It's been amazing to watch them learn and grow. As individuals. As a group. As a team.

As they prepared to present yesterday, I received from each team their speeches and questions about what they needed to include. I want to be clear here. Their work required little editting. Very minor suggestions about wording changes or things to add, but that's it. They could have done it without me and without my little contributions. But I was glad to be part of their process as they readied themselves for their first public presenation as a team.

It was arranged for them to go on after lunch. Each was nervous. Each wanted to do well, as much for Vita, the team, the people we serve as for themselves. You could see the pride that each person had in the work that they did. So they presented and each did brilliantly. They were alive. They were funny. They were informative.

And I felt a weird feeling.

One I shouldn't mention.

I felt a kind of paternal pride in their accomplishment. This is weird because we're all adults albeit that I'm way more adult than they are and I recognize that this was their accomplishment, not mine. But I felt it anyways.

For years I have worked independently as a consultant in a freelance capacity. In the last year, though, the nature of the work has had me working in teams and with others in a very different way. While I provide supervision and direction to the Personal Development Committee and while I am involved in the selection of team members, I didn't expect to have this deep sense of accomplishment and, paternal pride, that I did yesterday.

We humans are weird, and I'm amongst that group.

While driving to the airport to get Dick to his flight, he mentioned the presentation by the group. He said, "It heartening to see a group of young people who are committed and who 'get it' and who want to make a difference."

Tears welled up in my eyes and I looked out the window and said.

"You're right, Dick, it is."

Knowledge is Power

A family of a young nearly 17 year old man with Down Syndrome is approached by neighbours concerned that he has not been getting the education that he needs. Indeed he has virtually been denied education. The family is convinced that one of the neighbours knows of a place where their son will be given education and a chance to learn, in spite of the fact that he has Down Syndrome. They give their child away trusting that he will have new opportunities.

A few days later, election day in Bagdad, the young man wanders alone into a polling booth. Someone outside dials a cell phone number and instantly a 17 year old trusting and innocent man with Down Syndrome hears a small beep from the bomb that had been strapped to his body and then the explosion tears his body apart as he becomes the first human bomb with an intellectual disability.

This story outrages me on so many levels. But the part that bothers me is that I didn't know it. If I hadn't been in a car talking about how the world has changed with Dick Sobsey, who is in Toronto to do a presentation on the abuse of people with disabilities, I would never have heard it.

It reminds me of doing a lecture a year or so ago and hearing of a young man with an intellectual disability being set upon by other teens in a park in Sarnia. They sprayed lighter fluid on him and then set him ablaze. He suffered burns all over his face and scalp. I sat in horror listening to this story. Angry that it happened. Angry that I didn't know about it. Didn't have a chance to respond.

This story was eventually told, with my help, on CBC television here in Canada. But my guess is that most of the readers of this blog knew niether of these stories. Set in different countries and different cultures, they have the common theme of disrespect for people with disabilities. They also have in common the fact that there is virtual silence about these issues.

Is there, out there, any source that my blog readers know, for news and information about people with disabilities. I want to know these things, no matter how much they upset me. I want an end to media silence about violence against people with disabilities. I want there to be organized outrage - but how can there be when we don't know.

So, please, someone tell me a blog or website that collects worldwide news about disability.

Anyone?

Go Ahead ...

"deaf kitty and fat man"

"fat sex"

"prostitute bars in manchester"

"deviant shoes"

One of the cool things about having a site monitor is that you can keep tabs on your blog at the push of a button. It's only recently I discovered that you could check out how people found your blog by clicking on 'referrals'. It's interesting to see what other blogs are linked - but it's even more interesting to see when the blog was hit due to a google search. The full search comes up.

Today, someone was searching "deaf kitty and fat man" and my blog came up as containing all those words. The other searches above have appeared, some more than once. I wonder what readers who are looking for "deviant shoes" think when they start reading "CTF" and discover that there are no shoes, little deviance but a lot of difference. (Deviant Shoes, if you are back and reading this, I wear Birkenstocks, sorry - but there is someone I could introduce you to ....)

Do they turn tail and run or do they stay and read a little bit. I hope that they are accidental visitors who read something that makes them pause a little bit in their day - before clicking on in search of their holy grail. I hope that they find something here they like. Something to think about.

Even if the conversation at work the next day is ...

"You know, I was searching for 'transvestite rent boys' on the web and I came across this site written by a fat guy in a wheelchair. Man I didn't even know that cripples could type ... but he had something to say."

That would make my day.

Wondering again ...

I wonder why I only ever know one or two words of the songs that get stuck in my head.


I wonder why neighbours who complain of group homes aren't just called bigots and ignored.


I wonder why half the ramps into buildings are so badly kept that they are no use at all.


I wonder why none of us say what we really think any more. I wonder why so many of us have given up thinking any more.


I wonder why people choose to work within the disability field and then resent the needs of people with disabilities.


I wonder why disphobia isn't seen as signficant as racism or homophobia.


I wonder why people who would never go in my wallet find it acceptable to reach into the bag on the back of my chair - without permission.


I wonder why the general public are often nicer than the professionals trained to assist.


I wonder why our neighbours dog always shits on our side of the road in the morning - training or just preference.


I wonder why the internet is so accessible and so many people's hearts aren't ramped.


I wonder if blogging will ever make a lick of difference in the real world.

The Voyage

It was mean.

It was unnecessary.

We were driving home from the movie laughing and talking about what we had just seen. The sky was darkening and a storm looked like it would hit. It felt cosy in the car and we looked out at people scurrying to get home.

The light in front of us went red and we pulled to a stop. It was at a stop light that is almost constantly red. It is right in front of a little mall that has a convienience store and a ice cream shop that is popular with kids. The light is one of those that is activated for pedestrians and goes red to stop the flow of traffic so that people can pass.

During the summer it is common to see hundreds of kids pass to and fro as they head over to the small plaza to hang with or to leave their group of friends. Pulling into the parking lot to shop there is like driving into one of Gulliver's travels - the land of children - it's a place where adults are looked at with annoyance. This is their ground.

We watched as three kids crossed. Each with a bike, each in a helmet, each rushing across the street. I smiled as I remembered being young and learning to cross a busy street. Cars seem dangerous, ominous, to me and my heart always sped up as it seemed that they could suddenly dart out and smash into me.

The two in front were boys. I'm bad at ages but maybe 11 or 12. Their faces were grim with determination to get by us and back onto the safety of the sidewalk. Immediately behind them was a girl also with her bike glancing back and waving to her mom, who had stopped to say hello to someone, to hurry along. Then her eyes swept by us in the car and she smiled. She had Down Syndrome and with that extra chromosone often comes an openness that the boys, her peers in age, had outgrown.

I don't know why I did it but I did. I waved. I know I shouldn't have. I slap my hand for doing it. I encouraged her to wave to a stranger which she did. The boys noticed and thus I smiled at them too. They said something which I couldn't hear so pressed the button to roll the window down.

"She's not with us," he said wanting to make it clear that though they were crossing together, they weren't part of the same group weren't friends.

Her face registered hurt. She hadn't pretended to be with them but she was suddenly shoved away. Not part of the group, not a member of the team, not wanted on the voyage.

I called back to them, "Why would she want to be?"

They looked startled. Like they expected to be immediately understood. Like they had talked 'normal' to 'normal' with implicit understanding of the desire to be separate from one of those. Like they had been funny. They saw in my face anger. They didn't notice her hurt, she was inconsequential to them. They rushed away from me.

Mom, seeing the light about to change, dashed across the street and saw her daughter crying. "I wouldn't have left you here alone," mom reassured her. She grabbed her mom and hugged her.

"But she is here alone," I thought.

The light turned and we drove home into the storm.

How Does Your Garden Grow?

Years and years ago, the first time I went to lecture in Nova Scotia, I met Jim and Deb. We had powerful things in common and got on right from the start. As things happen in a world where everyone is too busy the only contact I had with them was when I visited them in memory. This often happened when people spoke to me about policies regarding sexuality and I told people of the work that had been done in Halifax - the work that had brought the three of us together.

So on Friday, when lecturing in Halifax, I arranged to have lunch and catch up with both of them. Even though the time was brief, it was nice to just sit and chat a bit. During that lunch a woman with an intellectual disability came up to speak to me. I had noticed her in the audience and I was pleased to see that a number of disabled folks had come that day to that talk. It was a talk on self esteem and I told a number of stories about how people establish self esteem through the relationships they cultivate - including the relationship with success, with establishing themselves against all odds in the community at large.

I saw her listening intently to my talk and though she laughed along with the audience, hers was a thoughtful face in the crowd and I could see emotions play across a face that seemed to typically look placid. I was in the middle of telling a story to Deb and Jim at lunch when she arrived at the table. She was extremely polite and stood waiting for me to finish. Instead I stopped and looked to her.

She told me that she liked how I spoke, she liked the stories and she liked the humour. I could see that this was not easy for her, that she had coaxed herself to come up to speak to me. I knew, then, that she really had something to tell me. In few words and a gentle tone she told me that she lived in the community.

She paused.

Let it sink in.

She was one of the free.

She then told me that she had a place that she lived in and that she liked living there. There was deep, deep pride in her face as she let me know that - like the people in my stories, she had risen above expectations.

"I think," she said, "that if you can live on your own, you can do anything."

I agreed with her and thanked her for coming up to speak to me. She smiled, almost relieved that she had managed to come and tell her story, and then turned and walked back to her table where she had had lunch. Something I had said must have moved her deeply, made it so that she wanted to share her success with me, let me know that she understood what it was to make good, get home, surprise everyone.

Small town eyes
will gape at you,
In dull surprise,
When payment due
Exceeds accounts received
At seventeen

This verse from the song, 'At Seventeen' by Janis Ian came to me unbidden as I watched her take her seat in the auditorium after lunch. Then I looked and saw the others with disabilities arrive and take their seats and look expectantly up at me. Waiting for the next part of the talk, the next story. And I was in awe of them. Because their stories, stories I didn't know, were triumphant stories. They were all of the age when 'at seventeen' they would have been diminished, disrespected and dismissed. But here they were, equals in an audience of equals. Hearing my stories of others with disabilities differently - as stories from within community.

I think her name was Mary.

I apologise to her if I got it wrong.

But this Mary was quite contrary - because she beat the odds, defied expectations, and became a woman, living freely in Halifax, relying on herself.

After the lecture she would go home.

Who'd have thought that was possible.

At seventeen.

Bart's Breakthrough

Yikes.

We drove from Halifax to Montreal, a 13 hour drive, and are just now in our hotel room. It's a long drive but it was a beautiful day and besides that we took a university course along the way. A couple years ago we discovered that you could buy cd's of lectures given at places like Oxford. So we took the 'Ideas That Shaped Mankind: A Concise History of Human Thought' class taught by some guy named Felipe Fernandez-Armesto. As we drove through the widerness of New Brunswick and Eastern Quebec he wove a history of thought.

Then he said something that made me really sit up and take notice.

He was talking about the Spanish invasion of South America and the wholesale destruction of cultures and peoples. Some guy, a Dominican Friar named Bartolome de Las Casas had an intellectual discovery, and according to the good professor was the first to say it, or write it down anyways. Up until this guy, humanity had no concept of ... well ... humanity. We were tribes, nations, races ... we were us ... and anyone else was them. The universality of the human condition did not exist as an idea or a thought.

So Bart, if he doesn't mind me being so casual, wrote something spectacular.

"All the peoples of the world are human."

This was an intellectual bombshell that set off a whole new way of thinking. His writings were tremendously popular in their day and helped shaped human conciousness in radical new ways. I sat in the car reeling from the simplicity of that statement. But then the lecture, as it had to, went on and we sank into the horrors of Social Darwinism, Nazi ideology and eugenics. The message of the good Friar was lost somewhere along the way, although the professor maintains there are still echos of the sentiment of the concept of the humanity of humans in our day to day discourse.

Would that some other great thinker come along to push the boundaries of Bart's thinking. He was talking about indigenous peoples.

But shouldn't we think of people with disabilities and differences as also being indigenous to the human condition? As being discovered precisely where we belong? As being a people?

And, therefore, the statement ...

"All the peoples of the world are human."

... applies ... we just need someone to remind us - every now and then - of that fact.

Enough

Today 300 people gave me a standing ovation at the end of my lecture day. Person after person came up and said nice things to me. My whole experience with people here in Nova Scotia has been one of constant affirmation for what I've done, the work I've accomplished and the ideas I have generated. All day today I felt in complete sync with 300 people. It's an awesome experience.

Why isn't it enough?

Spending a childhood being called 'stupid,' 'clumbsy,' inadequate,' 'unfortuate,' and 'ugly' ... having to answer the question 'Who do you think you are ..." at least twice a day ... with 'nothing, no-one' has left me unable to really believe that people are being anything but nice. Instead of feeling 'full' of the praise of others I feel like I've somehow cheated them, fooled them, tricked them into seeing something in me that doesn't exist.

A woman came and held on to my hand and cried saying that the two days had changed her. She thanked me deeply. It seemed like she was telling the truth.

Why isn't it enough?

"He'll never amount to much."

"I don't know what we did to deserve a kid like that."

"Even the dog doesn't like him."

Old news. Heard often in the past, never in the present, the words still stay with me.

The power of words. Sticks and stones may break my bones but names will really hurt m. The roar of past criticism drowns out present acknowledgement. It's not fair. For heaven's sake, I'm over 50, shouldn't I also be over those first few years of assault and abuse?

I understand all those people with intellectual disabilities that I meet that are praise dependant. The guys who ask all the time, "I did a good job, right?" and then look desperately for approval. The women who search your eyes as they ask, "Friends, right?" I know that desperation. Years of failure to please, years without parental pride, years lived with shame of not being quite good enough, each day of each of those years digs a deeper hole of need. For affirmation. For confirmation. For validation. I understand.

Maybe next time, I'll hear the praise.

Maybe next time, I'll believe it.

Maybe next time, it will be enough.

A Stick Up The ...

"The stick's up my back."

He'd broken into my reverie. I was sitting on the sidewalk on Argyle Street in Halifax having a cup of green tea. Joe had gone to park the car and deposit the groceries to the room. I had noticed this spot when we got here last night and I loved the idea of just sitting outside and having a quiet tea.

After the day's presentation I was exhausted. Haligonians are a terrific audience, willing to both think and laugh, but I was still tired. We did a few chores after the day, banking, getting groceries, making a couple calls ... but then I asked Joe if he'd let me off at the coffee bar and let me go in and get a cup of tea and just sit quiet for a moment.

I don't stare at people, I stare into the distance but sometimes people come into my gaze. I never see them, I'm looking but not seeing. So when he spoke to me, I was startled.

"Pardon," I asked.

"The stick's up my back." He said, grinning.

"I don't follow." I was confused.

"You were staring at the way I was walking so I thought I'd tell you I've got a rod up my back." No hostility, he had light in his eyes.

"Oh, sorry, I wasn't staring, I was just looking into the distance." I was embarrassed.

"I know, I know," he said, "I saw you sitting here in your wheelchair lost to the world so I thought I'd say Hi."

"What's the thing with the rod up the back?" I asked warming to this friendly stranger.

"Oh, everyone says I look like I've got a stick up my ass and I correct them, it's actually up my back. I have a rod that supports my spine. It works but I walk ... well ... like I've got a stick up my ass."

He noticed a friend and waved, we chatted a couple minutes more and he said, "I'm getting a sense that there is more and more of a disability community. Like you can just chat like we did because we have common ground. Do you feel that way?"

I said, "I'd like to think that we're headed in that direction but I meet so many people who really don't want to be associated with another disabled person."

"Pity," he said.

"Really, I said.

But he's inspired me. I'm gonna start just chatting to others with disabilities just because we're part of the same community. And just because - we should act like it.