Thursday, May 31, 2007


He approached me with a huge bag of pop tabs and a big grin on his face. I'd just finished doing a workshop for people with disabilities and was getting ready to have a meeting with the self advocate committee of Summer Street Industries. He let me take hold of the bag of tabs and I was astonished at how much they weighed.

Meet Archie Kontuk like I did. A man with a mission who has for 25 years being raising money to buy wheelchairs for those who need help in getting one. Others gathered round to help tell Archie's story and he himself handed me a brochure that he'd had made up to explain what he was doing. It turns out that Archie had been in a wheelchair for twelve years and through grit, determination and physio he strengthened his legs such that he could walk. But he never forgot how the wheelchair gave him the ability to move.

Years later he heard of a family with a little girl who had Spina Bifida and were in need of a wheelchair for her. Someone told him that you could raise money to buy wheelchairs by collecting pop can tabs. Archie was on his way. That little girl recieved the first of 11 chairs that Archie would help buy. Even now he collects tab and his fame has travelled far. He gets donations of pop tabs through the mail, some coming in sandwich bags, some in trash bags.

He's done the math, it takes 3032 pop tabs to make a pound and he gets 50 cents a pound. It then takes 3,032,000 pop tabs to get a wheelchair. Remember he's bought 11 (eleven) chairs.

As it turns out, Archie is having trouble with his legs again and it's possible that in the future he may have to use the pop can tabs to help him get his own chair. He says, "I'd get a good one."

If you want to save your pop tabs and send them to Archie, you can email him at or call him at 902-755-1745. You can join people from around North America who send Archie pop tabs.

One of the best things about travelling is that I get to meet cool people. Archie is cool. He has a passion for living and a passion that carries him through life on the wings of meaning. Talking about giving back. I'll always remember the weight of those pop tabs in that bag. But I'll really remember the grin on the face of Archie when I handed them back to him. He held them as if they were precious. As if he could see into the future and see the wheelchair he was buying for another person.

If that's 'disabled' we could all use a touch of it.

Tuesday, May 29, 2007


Right now I'm sitting here in New Glasgow fuming. My blood is boiling. And I'm mostly mad at another nameless, faceless disabled guy. I checked into the hotel, assured myself that the room was accessible and then got to a room with NOT ONE ADAPTION for someone with a disability. NOT ONE. The door to the tiny bathroom is too narrow for a chair, there are no grip bars by the toilet or grab bars on the shower, and the toilet was made, I'm sure for kindergarten kids. NOT ONE ADAPTION.

Now, you don't need to know this but I have to tell you for the story to make sense, I need an accessible toilet. It's manditory.

So I call the front desk and say, 'There is a mistake, I need an accessible room."

"That is our accessible room," I'm told.

"What?" I exclaim.

"There are no stairs, it's accessible," she says.

"But, but, I splutter, there is nothing in the washroom to make it accessible."

"Another guy who used a wheelchair stayed there and didn't complain." She says to me.

I guess I'm the ungrateful crip who wants to actually use the washroom at least once, maybe twice during my stay. I guess I'm not grateful for the fact that there are no stairs to get into the room. I wonder why they don't call all the rooms on the main floor accessible then but forget to ask because I'm upset.

So, I call every other hotel in town and they are all full.

I'm stuck.

Angry. At the hotel for booking me an accessible room even though they don't have it.

Furious. At the guy who stayed here before and was polite - he coulda thought of me and any other disabled person that would want to be able to stay.

Well they know now. They know that this is one angry crip in their hotel. And that's not ok.

Just as I'm finishing this the front desk calls, "Do you want us to go to the drug store and get an insert for the toilet so you can use it?"

"Um, yes," I say, "But don't ask me to be grateful or say thanks, cause that I can't do."

"No, no, we'll get it to you around six."

So the room has a tiny adaption. I feel like I've done my job for the next guy. They promise to 'explain' the room to anyone else who books it with a disability. Uh, huh, I'm sure.

But at least they will be able to go to the washroom.

And it's over. I'll spend the night and get out of here.

Funnily, I'm more exhausted by this exchange than I was from the days work.

Lifting yourself up from 'lesser' to 'equal' in the eyes of another takes a lot of energy and mental muscles that can't ever be left to atrophy.

Blind Date

We stopped for something to eat on our way from Halifax to Port Hawkesbury as we were just trying to extend the weekend feeling. It was just a little cafe but they had a couple of things we, as vegetarians, could eat. We sat down at a table near the window and watched as another couple got out of their car. At first we thought the husband was just gallant but then we noticed that his wife, wearing stylish dark sunglasses had a white cane folded up and hanging by a strap off her arm. She placed her had lightly on his arm and they made their way into the restaurant. They took a table a couple away from us as they didn't want to sit in the sun.

Joe and I placed our order and returned to our chat, which was really just gossip as we were catching up on a phone call Joe had made to a mutual friend. The waitress was magnificent she brought the couple both menus and spoke to both of them equally. Hubby took up his menu and began a chat with his wife. He didn't read the menu for her at all. Instead he talked about what he was going to have and seemingly puzzled over the choices.

"Hmmm, I'm not sure about the appetizers, I don't want one, do you?" She shook her head and then he continued by going through the menu like he was thinking out loud. "The burger looks good, but I'm not sure if I want that or, maybe the ribs, but look here, they have ..." And on he went touring the menu, talking about the items. She listened intently to the audio menu, smiling often at her husband's asides about the food.

When the waitress came they both ordered.


He helped her out in such a natural way, it was like they had figured out a way to deal with the world made for sighted people - as a couple. It was awesome to see them together and supporting each other so naturally.

When we were done and getting ready to go, I backed up from the table and Joe reached down, without thinking to put down my feet flippers. I picked up our stuff and out we went. It struck me then how we have just adapted to my disability and we each do stuff to make things go smoothly and easily. Done in ways where power doesn't shift and respect doesn't waiver.

So it's possible to support with class, it seems to begin with genuine care and profound thoughtfullness.


Monday, May 28, 2007


How do you find something to write about every day on your blog? I've been asked this question many times and I say that there is always something happening around that is worthy of note. I get disbelieving eyes. So I thought I'd give an example. We went out for breakfast yesterday morning in Halifax. There were ten things, at least, that I could have worked into a blog if I'd had the mind to ... so ... I wrote this when I got back from breakfast.

Ten things that inspired me at breakfast this morning ...

10) Seeing an elderly man pull out and then push in the chair for his wife

9) Seeing a young man, sitting at a table with 8 other you men, take off is baseball hat even though the other 7 left theirs on.

8) Seeing a little girl collapse in laughter when she spilled egg on her blouse.

7) Having the waitress whip a chair away from a table when she saw me coming down the hallway in my chair.

6) Watching a skinny woman slather two big packettes of honey on her toast and eat it with gusto.

5) Getting green tea served without ordering because I had it yesterday.

4) Watching a young couple pause and say grace before eating.

3) Noticing a little baby crawling happily around the table with everyone in the restaurant looking out for him.

2) Seeing a waiter, suddenly overwhelmed by the volume of stuff on his tray, be steadied by another waitress who saw what was happening and came, without bidding, to help.

1) Sitting quietly with Joe, looking out over the harbour.

Inspiration is everywhere, you've just got to look.

Sunday, May 27, 2007

A Nice Day

I sat in the mall and waved into the clerk at the desk. The store had an item I was interested in purchasing but there was no way that I could get even a few feet inside. The aisleways were crammed with stuff making passage impossible. I didn't make an issue of if, so what, as long as he could get me what I wanted to look at everything would be fine. Joe was back a couple of stores paying for something and I had gone on alone. The item was exactly what I wanted so I asked the clerk to put it on the counter and Joe would be able to go in an pay when he was done.

That's what we did, no problem.

I didn't even make the slightest noise about the inaccessibility of the store.

As we continued our way through the Halifax mall, we both noted that it was 'disabled day' in the mall and there were people everywhere in wheelchairs. Most were motored chairs, one guy was nearly my size and had the "Mac Truck" of chairs. It was huge, looked roomy, and could move! I tried not to envy him as I pushed my way through stores and through much of the mall. We went to the second floor and there was another store that I just couldn't get into. It was exactly my kind of store, "Browser rated - 10" and I looked longingly into the store. It would have been dangerous to try and get around in there, I would have knocked things over. I took my custom elsewhere and that was it.

I wondered why they bothered ramping the mall for me to get in if the stores made it impossible to shop. I still didn't say anything, but it angered me.

There are days when you just don't want to be an activist. When you want to just have a nice time and let things slide. When the fight just isn't in you. That was yesterday. All I wanted was a nice day, and I had one. But now I'm feeling guilty, like I should have made a comment or complaint to someone, written to the paper, protested in some way.

But I'm allowed to just have a nice day some days, right?

I'm not sure.

Saturday, May 26, 2007

Just Joking

Sometimes people just don't 'get' me. My sense of humour eludes them. Shortly after landing in the wheelchair, I was downtown with some friends going for a beer. The bar we habituate isn't accessible in that it has one step in and a flight of steps down to the bathroom. But that's where I wanted to go so we went. We managed me in and chatted like old times, with the exception that regulars kept coming over and asking me what was wrong with me and how long would I be confined to the chair.

When we left I was feeling the beer and was in a, um, playful mood. It had been nice being back to real life - out of the hospital and out with friends. We stopped at the corner and I waited as everyone else ran into 7-11 to pick up pop, snacks and smokes. As I waited a homeless youth approached me and asked for money. It was all the opportunity I needed. My warped sense of humour flew out of me.

"Man, you realize you just tried to panhandle a cripple for money, do you realize how far you've fallen?"

I thought that was really, really funny. But he burst into tears and flew off. "It was just a joke," I mused to myself, giggling at my own wit.

So, I've been careful with the 'cripple' thing ever since, not wanting to upset people unnecessarily. Until last night, that is. We went for a beer in the bar downstairs in the hotel and sat at the bar. We'd been cooped up in the car for 11 hours as we drove from Quebec City to Halifax - I was a bit stir crazy. We parked at the bar and the bartender approached and asked, "how are we tonight?" I said, "Well, I can't walk, but other than that, I'm good." He actually laughed. I was bouyed by my success with crip humour.

Above the bar was a huge screen playing sports. Another waiter came and stood beside me as he was rolling cutlery into napkins. He asked if we wanted to wager on the 'Memorial Cup' and I told him that I didn't even know what the 'Memorial Cup' memorialized. Then he laughed and told us that the game had been on earlier, he knew the results so he knew he'd win. I joked, "You were going to swindle a cripple? What kind of guy are you?"

He leveled his gaze at me and said, "Hey, hey, hey," long dramatic pause, "swindle is an awfully harsh word." And we both laughed.

I've decided that I like the maritimes. They don't take anything too seriously. I think this is going to be a fun trip.

Friday, May 25, 2007

The Bird

It was fun and a real break from the drive. The temperature soared past 30 degrees and we had the windows down both to save gas and to feel the wind on our skin. The trip had gone well and until the traffic slowed to a stop in Montreal approaching the Champlain bridge, we had made good time. But now time crawled slower than we did. The heat radiated of the pavement and off each and every car. I distracted myself by fingerspelling words on trucks and keeping my memory limber for numbers by doing the occasional license plate.

A van pulled up next to us and a teen boy, at the gawky age, wave at me and signed to me, "Are you deaf?" I looked up startled that he was signing at me and then he made the sign for fingerspelling. My God, I thought, he'd noticed me passing time practicing. I signed, 'No, you?"

Then he was off, way too fast, way too many signs I don't know. I had learned sign when working on a deaf ward in a large institution. I learned 'exact english' rather than 'american sign' and thus am left in the dust when trying to read or communicate with the deaf world. That and the fact that I haven't used sign in a long time and I was outclassed by this kid.

I tried to remember, 'slow down' and tried it out. It worked.

"No, not deaf." I'm sure that's what he said. Then he was gone. His lane sped up and I was sitting frustrated. Joe noticed my frustration and said, "I'll try to catch up." Well that was nice of him but this was out of his control. But a few minutes later we pulled up by the van again. He pointed at the woman in the front passenger seat and signed, slowly, 'Mom, deaf."

"OK, I understand," I signed. "You sign good." (I told you my sign is limited.)

"Thanks," he signed, "I like sign."

"Me, too," I said as this time we pulled ahead.

As we got to the bridge we were beside them again, this time the whole family waved. I guessed that the kid had told mom and dad about the conversation he was having with this big stranger in a car in the other lane.

I looked at all the others in other cars, all insular, unable to communicate to someone a car lane away. And here we were signing and spelling as we drove across the bridge.

We waved as we pulled away and they waved back. The time had passed quickly and we were all smiling while the others looked bored. I felt sorry for them. But just then a car swerved and cut off the van and scared everyone in every lane. Now there was a profusion of signs - from every car. Forget ASL, there is a universal sign for ... "you are driving badly" ... and it involves tossing a pidgeon or flipping the bird or something such.

A moment where sign ruled and communication was immediate and urgent.

Integration and inclusion - I`ll take them however they happen.

Thursday, May 24, 2007


We were driving north on the 400 in rush hour traffic. I'd had to make an emergency trip down to see the doctor because suddenly my blood sugar went out of wack - no reason why. I didn't want to travel tomorrow without checking out what was going on. The only appointment they had was at 3:20 so there was no choice. Rush hour had to be faced if I was going to get a check up.

To make a day of it, we met with friends, went to see Shrek the Third and had a cup of tea together and caught up. They say that you need to make lemonade out of lemons and that's what we were trying to do - and it was working. But after the movie and the tea came the doctor and the long, long, long drive home. Just as we got onto the 400 I noticed a father - son team driving in the lane beside us. They were chatting, laughing and having a great time.

It's nice to see men parent. It brings out a different kind of manliness and it's rare enough to catch the eye - like a small pearl amongst a ring of diamonds, you notice it.

"There's you blog for tomorrow," said Joe, out of the blue.

"Whaaa? Whaaa?" I said as he broke into my thoughts about the visit with the doctor.

"That guy in the car with the kid, you didn't notice?"

"Notice what?"

The car was now a few lengths ahead of us and Joe sped up and went around a couple of cars and back into the center lane again. We pulled up to the car and I looked in. They were still yakking. The boy sitting next to dad had Down Syndrome and he was talking a mile a minute. Dad's face was one of concentration - he was listening. I don't know what the kid was saying but it looked like he was telling an epic story.

"Nice," I said.

"Nice," Joe responded.

It's a simple scene. But one that cheers me.

Years and years and years ago when I was a mere boy I was charged with being a behaviour consultant to families with children with disabilities. In all the years I did that job, I don't think I ever met a dad. Tons of moms, of course, but no dads. Many women told of husbands leaving them, not being able to cope with a child with a disability. Those dads that stayed grew invisible.

But things are changing. In Fort Collins at a workshop for parents. There were dads there. Not one, not two but many. They asked questions. Had concerns. Were there.

And now, on the 400, a dad is driving his son somewhere. Home? To a game? Who knows, it doesn't matter.

Have men grown up? Changed?

Has disability become less shameful?

Maybe both.

Maybe neither.

But it doesn't matter to that kid and his dad.

They were just driving.


Wednesday, May 23, 2007

And Now For Something Completely Different ...

Gerri would sit for hours with a long pointer attached to a band around her head slowly typing on an adapted keyboard. Letter after letter after letter ... there was an aura of calm about her, the type of calm that surrounds the truly determined. Her story was inspiring but she never told it. Instead I learned it from the other teacher's aide who worked in the classroom with me. Swept away by a brother who believed there was more in his sister with cerebral palsy than anyone thought, she was brought to Toronto from Newfoundland to begin a new life. She started behind and slowly caught up. Gerri might have been the most doggedly focussed person I've ever met.

We became friends. One night when we had all gone out for a beer, Gerri was in a particularly affable mood and began telling stories and jokes. She collected jokes about 'newfies' and any joke she could ever find about cerebral palsy. Until Gerri, I didn't realize there were so many jokes about any specific disability. But she knew them all.

Her favourite ...

Two women were in Toronto going down Yonge Street when they decided to stop into a bar for a drink. The woman in the wheelchair, with cerebral palsy, pointed out a bar on the next block to her friend - a walkie. It was a 'ye ol'english' kind of bar and it just happened to be accessible. So in they went. The bartender stared at them as they approached the bar and then rushed over and began speaking, rapidfire to the walkie. He was saying how wonderful she must be to be out with someone in a wheelchair like that, he stated that the walkie must be so patient and kind and generous. The woman with cerebral palsy was very annoyed by what he was saying and spoke up, through a thick cerebral palsy accent, "Listen buddy, I can do anything you can do."

He looked at her in shock that she had spoken real words. "What a wonderful attitude," he said, "it's not true, but what a wonderful attitude." The woman with cerebral palsy looked around the bar and noticed, being that it was an English style bar, that there were people playing darts and that one dartboard was free. "Wanna game of darts?" she challenged.

"You can't play darts, look at your hands jerking around like that," he said.

"Whatsa matter, are you chicken?" she stated with her voice full of mocking.

"No, no," he said, "if you want to play darts we'll play darts." He was annoyed by her but wasn't going to be shown up by her. They went over to the dart board and she invited him to go first. He did, now being a bartender in an English style bar he knew how to play darts. He didn't want to humiliate her so he aimed for, and got, a modestly good score. When he was done he got the darts and said, "What now?"

She said, "First you've got to put the darts in my mouth."

"Put the darts in your mouth!" he said, shocked.

"Yeah, then you've got to throw the board at me."

Gerri guffawed at the punchline, as did all the rest of us in the bar. It wasn't just a joke, Gerri lived her life with that kind of defiance. Tell her she couldn't do something and she'd prove you wrong every time. Later that same evening I remembered that she had been off for a vocational assessment. She'd had to take time off from her job working as a counsellor for a camp with kids with disabilities. I had hired her to work there thinking that she'd be good at the job and that it would be good for kids with disabilities to have a counsellor with a disability. I was right on both counts.

She told me that the assessor had been very gentle when telling her that her chances of full time employment, given the level of her disability, was minimal. She looked at the professional dream-dasher and said, "Could you get my purse?" They did. "Could you pull out the long white envelope in my purse?" They did. "Could you look in the envelope?" They pulled out a pay stub for her full time job. Gerri grinned, "That made my point perfectly well."




The ingredients to the 'self esteem cocktail' that we all need to get through this life.

Tuesday, May 22, 2007

What if?

When I go to see the doctor, my IQ drops 50 points.

I don't know why, it was always thus. My doctor in Quebec was a friendly chatty woman who created an atmosphere where I could freely chat and comfortably discuss health. But even there I had difficulty in talking to the doctor easily and would often fumble around for words. It's gotten worse with my new doctor here in Toronto. He gives me really good health care but is icy cold, never smiles and never, ever, ever chats. Going to see him, which I must because with all the medications I'm on now, it seems like I'm kept alive by chemistry, is not an easy thing.

I've taken to writing a list of concerns down on a paper and going in and going over the list item by item. He responds professionally and appropriately. Then we're done. But the whole time I'm in there I feel like I'm a bumbling oaf.

Luckily, really luckily, Cicely wasn't like that.

The story of Cicely and her surgeon as told by her mom continues to upset me. Sure I'm glad the surgeon was 'educated' and 'challenged' about her bigotry by Cicely's trusting nature. Sure I'm glad that it all ended well.


What if Cicely was like me and during the surgeons visit she shrunk into herself rather than reached out of herself? What if she was so ill or so frightened or so tired - that she wasn't herself? What if she hadn't been up to teaching a class on disability rights, disability pride and disability value? What if she had been cranky? What if she had been whiny? What if she had just lay there and not engaged the doctor? How would the surgeon then have seen her? What kind of care would she have gotten? Thankfully, Cicely was up to the task ... but ...

Isn't it a lot to ask of a sick child?

Isn't it wrong for a doctor to give a child of one colour better treatment than a child of another? How is this different? Why is a doctor even allowed to graduate when they carry a belief system that would give life to one and deny it to another.

What part of 'all' don't they understand?

I shake my head at all of this and don't know what the answer is ... how do we, collectively, challenge the prevailing orthodoxy that sees disability as tragedy and death as relief?

We all owe Cicely one. She managed to get through to one doctor.

But what do we do about the rest?

Monday, May 21, 2007

Sis - update

Dear Dave,

I’m so sorry it has taken me so long to write back but we’ve been at the hospital almost non stop since yesterday morning. The most important thing to tell you is that Cicely came through the operation better than we could imagine, better than we ever hoped for, she is looking like her old self and we can take her home in a day or two. I’m amazed at how well she has done here at the hospital because I thought she’d be upset by being away from home and familiar surroundings. But you remember me telling you that I was worried that she was too friendly, well even though we have to work on that I’m glad of it for now. She quickly made friends of all the nurses, there is one male nurse who she has adopted as her own - and he loves it.

But the big story, besides her doing so well, is what happened with the surgeon. We had asked to meet him before the surgery and were told that it wouldn’t be possible but the nurse said the surgeon would speak with us after the operation was over. We waited and I don’t think we’ve ever worried so much about anything. Both of us just sat quietly. My husband just couldn’t talk. Not even say a word. I think he was afraid of breaking down into tears. So we just sat with each other.

When the surgeon came out I was surprised to find out that she was a woman. I don’t know why I automatically assumed it would be a man. The surgeon told us quickly that Cicely did fine in the operation and that we could relax that as long as she got through the recovery period there was no reason for further worry. Then she asked if she could take us for a coffee. We looked at each other, we both thought that the offer was strange.

The surgeon bought the coffee for all of us and then sat down. She said that she wanted to apologize to us for not meeting us before the surgery. Apparently she had gone to meet Cicely and talk with her like she does with all patients and that the meeting with our daughter had upset her. When we tried to say something she just raised her hand like she didn’t want us to talk. She said that when she heard that Cicely had Down Syndrome she couldn’t understand why she would be doing the operation, that it would be best to let nature take it’s course.

I got upset but again she just raised her hand. My husband looked at me like he wanted me to just let her finish. So I did. I was angry but I did. She said that after talking with Cicely for just a couple of minutes, she was ashamed of herself for her attitude. She wanted to apologise to us for even having thought such a thing. She actually started crying a bit. It was like she had this big realization.

When she calmed down I asked her what it was about Sis that struck her. She told me that after just a couple of seconds talking to Cicely she realized that she was just another little girl who needed help. She said that Cicely had taken her hand and held it while she spoke with her. Like she really trusted her. She started to cry again and said that Cicely shouldn’t have trusted her because she came in wondering why she had to operate on a child like her. She promised that she’d never make that mistake again.

She thanked us for listening to her and we thanked her for saving our little girls life. Then it was all over and we went up to see if we could see her yet. We went in and even though she had just had surgery we could see health returning to her minute by minute. My husband broke down and just cried. I realized, I had never really seen him cry before. It shook me a bit. But I had always wondered, down deep, if he really loved her. He had been so upset when he found out she had Down Syndrome. I know now.

The thing about all this is that I have to now live in a world that I see so differently. I’ve lost friends who said cruel things about Cicely. I talked with a doctor who’s first impulse was that Cicely should just die. I’m thrilled that she’s alive but for the first time I understand what kind of world she is going to grow up in. It’s a hard realization.

Oh, my, I was just going to write you to thank you for your prayers. I saw that you put my letter on your blog like you said you would. I’m going to be away from the computer again for a while as I’m going back to the hospital. So, if you want, you can put all of this, or part of this on your blog.

Thank everyone for me will you?

Note to Readers

Obsessively, I checked my email all day yesterday. Even when I got up to go to the bathroom at 3 this morning, I checked. But I have heard nothing from Cicely's family. As soon as I do, with their permission, I will let you know. I have gone ahead and done a daily post today ... wishing all the while that I was reporting good news to you all instead. Dave


One day I noticed I could see it.

Actually see it.

It had been there for years, I don't remember it showing up - although it must have. Just below my right eye a kind-of mole formed. I have 'Neilsen' eyes from my mother's side of my family, they seem to be perpetually smudged with dark and the bags under them are packed to overflowing. You could always tell how well my Auntie Gladys had slept just by looking at the state of her eyes. Me too.

Not a vain person, about looks anyways, I didn't really care about having dark circles under my eyes nor about the mole that showed up one day and then decided to stay. I didn't think about it or make any kind of fuss about it.


One day I could see it. It was now in my field of vision. Over the years, then, it must have been slowly growing. Now it bothered me. I began touching it all the time, smoothing it down so that it was no longer in sight, checking daily to see if it was getting bigger and bigger. Now it bothered me. Just a little. And I discovered a wee bit of vanity that I really didn't think was there. I began to wonder if people noticed it, thought about it. Without becoming an obsession, it annoyed me.

Then a few weeks ago when I was at the doctor's office getting a check up and prescriptions filled, I looked at the doctor and saw it. So I brought it up. "How would I get rid of this if I wanted to," I asked him.

My doctor is a very handsome man but who lacks any real personality and who never, ever chats, quickly got up from his chair and came over and took a look. "I'll hit it with liquid nitrogen and it will probably fall off," he said and disappeared from the room. He came back with a pair of tweezers and a spray can with a long nozzle. He took hold of the mole, pulled it long, and sprayed at the base of it.

"So this is cosmetic surgery," I thought as I joined ranks with Paris Hilton and Michael Jackson.

Over the next several days, the mole began to grow hard, and black. It was odd to the touch. Then, on the road from Kansas City to Saint Louis, it fell off. Just like the doctor had said. All that was left was a small red dot, barely visible, where the mole had been attached to my face. I kept looking at my face and the diffence was enormous. Incredible.

I never said anything.

Surely Joe would notice. He's looked at my face for almost 40 years.

Not a word. When I pointed it out, he made the appropriate noises. Harumph.

So when I went into work at Vita, I waited. Called Lina, she of shiny shoe and determined step, into my office. She didn't notice. Nor did Manuela, nor Jon, nor Ann, nor Grace, nor Amanda ... no one. Not a person. Here I had this huge hunk of skin that dangled from my face removed and not one person noticed.

A few days later though I woke not feeling quite right. Not feeling myself. But the day had to be done, tasks had to be accomplished. Throughout the day, starting with Joe in the morning, people asked how I was, if I was ok. They all noticed.

They noticed me.

Not the mole.


I think, in an odd way, that both cool and comforting.

Sunday, May 20, 2007

My Prayer Out Loud

It is hard for me to pray publicly. Attending Varsity Christian Fellowship as a new believer and as a very young man, I was asked to do the opening prayer. So, I did. Not a thee or thou to be heard, I just prayed. Afterwards one of the members commented that someone needed to teach me how to pray properly. I’ve been shy of public prayers ever since. But today, for Cicely. I am going to over-ride my shyness on this issue.

Lord, My God, I am not going to pray for Cicely’s recovery and health. I fully trust in You and believe You to hold Cicely and her family close to Your heart. I need not pray for this. Instead, Lord, I pray for Cicely to grow up and grow strong into a world that sees her fairly. That waits for her with welcome, not charity. That Cicely is given the whole of her life to prove to those who thought her life meaningless how wrong they were. I pray that each of us who make up Cicely’s world be given the strength to wrap our fingers around the edges of reality and with a mighty heave -lift - and shift perspective just enough that Cicely’s true value comes into focus. I pray that all the prayers today for Cicely, for her mother, for her father, be loud enough to shatter prejudice and bring down preconceptions. I pray that they are loud enough that barriers tumble and doors are blasted open. I pray that they are loud enough to reach Your ears and our hearts. I will not pray for what I believe You want - instead I pray for what we need. A better world for Cicely. A world with Cicely in it.


Saturday, May 19, 2007

Loud Prayers

From my mailbox today - reprinted here with permission:

Dear Dave,

After a couple of days of looking, I found your email address on my notes from the conference you gave a few weeks ago. You might remember me because we spoke briefly about my daughter who has Down Syndrome. I’d asked you for some information and you kindly gave me your email address so that I could follow up with you if I needed to. Well, I’m not writing about her behaviour, if you remember I was concerned that she was too friendly and too trusting of others. I’m writing because I’m at my wits end and I need to just do something.

Cicely has been taken seriously ill and is in hospital right now. She is to undergo surgery as soon as it can be arranged, tomorrow at 10 is the tentative time. This has taken us by real surprise as we had no idea our little girl would be struck like this, she had been given a clean bill of health. My husband and I are devastated by the suddeness of her illness and the emergency treatments she is now undergoing. What’s really got me down is that several of my friends, who I thought loved Cicely, have said horrible things like, "Maybe it’s for the best." One woman who I will never speak to again said, "God is taking your burden away." My husband says that they mean well, but how can they?

I remember you talking about prejudice and about how people with disabilities are not valued. I never in my life thought that you’d be talking about Cicely. She is the dearest little girl. I know that all parents say that, but she truly is a gift to us.

I’m going on and on. What I’m asking for isn’t advice. I remember you told a story about the church you went to and about ‘bank shot prayers’. Well, I’m asking you if you could take a moment from your busy day to pray for our little girl. Cicely needs people to pray for her who wish her well. People who wish my family well. Not from people who think that she'd be better off, or that we'd be better off if she didn't make it. I want loud prayers for Cicely. Prayers that God will hear over the others.

Would you do that for me?

* * *



And often


We talked about aquariums.

We talked about snakes and toilet paper and Atlanta.

But we didn't talk about work.

Everyone gathered at Fressen, Toronto's amazing vegan restaurant, for dinner after a long day. 12 were visitors from the UK who had spent the day at Vita - 3 were Canadians who had helped either put the day together or made it run smoothly. We began by meeting at head office and doing 3 presentations on sexuality - creating a safe agency for people to live in - serving sex offenders with disabilities - then they left in two groups. Each group going to a different location to see how services were set up.

Back at head office two hours later another two presentations and a question and answer session. It was intense and their interest was palpable. The questions flew thick and fast, treatment, liability, funding, staffing - these people knew their stuff and they knew what they wanted to know. When it was over, I was drained. Partly because of the intensity of the day and partly relief after much planning that it had gone well.

Then it was a trick of organization to get everyone back to Toronto, get the vans back to Vita and get out to the restaurant. We arrived late because of the long weekend traffic and we found everyone sitting around three tables pulled together and people chatting.

About food.

About wine.

About Toronto.

But not about work.

For two hours we yakked and laughed and swapped stories. Even though the only thing we all really had in common was our work, our passion for providing the best service possible, there seemed to be an unspoken agreement that the day was done. Work was finished and now we were to be ourselves. People with other lives and other interests.

It was a lesson for me, who sometimes spends my weekends reading mission statements from organizations around the world - to just let it go. To rediscover the 'me' who isn't working. It was such a healthy day.

Work hard.

Play hard.

Know the difference.

Friday, May 18, 2007

I wonder

Does anyone else ever look at a bicycle seat and wonder how you ever sat on one?

Does anyone else ever turn off the news because it's just to upsetting?

Does anyone else ever flip to the weather channel because there's always something interesting on there?

Has anyone else ever given a compliment just to get one?

Has anyone else ever decided just not to decide on something?

Has anyone else ever bought penny candy and paid 5 dollars for it?

Can anyone else explain how people can be cruel to children and animals?

Can anyone else explain how racism is possible?

Can anyone else explain why God made sugar if it wasn't to eat?

Does anyone know why accessibility is such a big issue when it's a small thing?

Does anyone know how the government actually spends our money?

Does anyone know why itches shouldn't just always be scratched?

Has anyone ever found a missing sock?

Has anyone ever glanced in the window at night and screamed at their own reflection?

Has anyone ever woken up peeing in the fridge?

Can anyone explain why sitting in a wheelchair is different than standing on feet?

Can anyone explain why McDonald's hash browns taste so good?

Can anyone explain why airlines say, "You should now be seated comfortably in your seat"?

Does anyone ever have to do the math to figure out your own age?

Does anyone ever fart and not find it funny?

Does anyone ever pretend that you thought up an idea that you read somewhere else?

Has anyone ever found a quarter and not felt really really lucky?

Has anyone ever prayed for rain and got a tornado?

Has anyone ever given the 'right' answer with the 'wrong' attitude?

Can anyone have a bad day that's not made better by a fudgecicle?

Can anyone live within their dreams?

Can anyone actually love anyone else?

Does anyone really prefer television to the movies?

Does anyone really like lime green?

Does anyone ever really see heaven in a baby's smile?

Has anyone ever talked to a kid with Down Syndrome and felt wiser afterwards?

Has anyone ever imagined holding their bosses face under water in a fast flowing brook?

Has anyone told a white lie in order to keep the peace?

Can anyone actually make a world of difference?

Can anyone make it through without a broken arm or a broken heart?

Can anyone, just anyone, sit and wonder for an hour or so?

Thursday, May 17, 2007


"That's an insult, I tell you, an insult."

She was nearly fifty, plump and in need of telling me this story. This happens to me a fair bit. Some hear me tell stories in my lectures and a need grows to tell a story themselves. I was sitting by the book table and I was tired. But she was pleasant, and too, I like stories when they are told for both the listener and the teller. When there is as much a need to tell as hear.

"I was driving her to the hospital. She had been sick a fair bit and I was just talking to keep her mind off seeing the doctor. She never complained but you knew she didn't like the ordeal. She didn't like seeing the doctor and she didn't like sitting in a crowded waiting room and having eyes look at her and discover her Down Syndrome. It made her feel centered out. Picked on. Even though no one ever said a word."

She paused as someone came and asked me to sign a book, I saw her patiently wait and then I realized that the story was for me and me alone. An intimacy grew between us.

"So I went on and on about things. I asked her what she wanted to do afterwards. She said, quietly, that she'd like to go for an ice cream. I agreed but I told her that I'd just have a coffee. She looked at me and asked me why I wasn't having ice cream. I told her that I was too fat, that I had been trying to lose weight all my life and that I just didn't want to be fat anymore."

I nodded, I had been there too ... not for many, many years. But I had been there. I knew the suffering of wanting to be something else, something different than was made. So, I nodded. Not in agreement, but in understanding.

"She asked me if I'd always been big. I said that I had. She asked me if I ever prayed to be small. The question surprised me. But I decided to be honest. I told her that I had often prayed to be thinner. That God would quickly fix me." Tears were forming in her eyes and her hands were now wringing. Fat people don't admit this easily. It was hard for her.

"She told me that her mom had said that it was an insult to God to ask to be different than you were. It was ok to ask to be better, to be nicer, to be kinder ... but it was never ok to ask to be different."

Another person came to ask a quick question as break was ending. I asked if we could talk the next break and she said 'sure' and left us alone to finish.

"What did you say to her?" I asked.

"I asked her if she ever prayed to be normal, to not have Down Syndrome. She told me that she did when she was a kid but not now. When she told her mom, her mom got mad. 'Mom told me that I was perfect. That God made me the way I was. That I should thank God for making me not insult God by not being grateful. That's what I think you should do. I think you should thank God.' By then we were at the hospital and we waited to see the doctor. Waited to have a couple tests run. Waited in line just to wait in line."

"When we got out," she continued, "we went for ice cream and I didn't say anything, I just got us each a bowl. And she gave me a big, big grin and said, 'That makes God happy too.'

We laughed and agreed that not a doctor nor nutritionist in the world would agree with her. But that she had a point. When the day was over I asked her if I could write the story. She hesitated and said that I could.

"If you'd rather I didn't, I won't." I said.

"No, it's just that the memory is so precious to me. I don't tell many others. But I think it might be precious to someone else too, so go ahead."

I said I would.

Because it meant a lot to me too.

Wednesday, May 16, 2007

Regrets and Resolutions

I swear I didn't know.

I can't believe I didn't know.

I'm not sure what I did wrong.

I am just leaving a meeting of staff to discuss how our new policies on abuse and abuse reporting are working. We've encountered a number of bumps on the road - nothing set to derail us but trial enough anyways. The meeting was to discuss how an incident was handled, how we could do it better ... but it was also about the 'why' of the new position on abuse.

Part of my job is crafting an approach to help agencies, first ours - then any who want - become as abuse free as possible. As a result our abuse reporting policies are strict and are aimed at aggressively targetting abuse while attempting to be gentle to service recipient and service provider as possible in the situation. Difficult but not impossible. As I left I am forever grateful to this agency for letting me do thing and to work through these issues.

But it all shook up a memory. Something that I don't talk about much but something that I felt I had to share with the group of staff. It made me feel vulnerable in the telling. It made me feel helpless in the memory.

Ron was a fine guy. I liked him. Destined for great freedom in the community, once a couple of things were dealt with. Partly I liked him because of his big open smile and his ability to see our help with genuine affection and understanding. Partly because he always pushed his case, always knew that the limits of his disability were just beyond the next goal. Very cool view of life.

I had been counselling him for quite awhile and then, with circumstance and time, a new therapist came on. A few weeks later he told her. He had been sexually victimized by a particular staff. When the call came to me, I was reeling. The staff he named was well known to me, well loved by many, well thought of by all. But I believed instantly. Because I knew Ron. He was not a liar. He had become vulnerable to me over his sessions, but he never masked truth with lie, it was beneath him.

I'd had lunch with his abuser.

I felt traitorous.

Why didn't he tell me? Why did he tell his new therapist, she had no history with him. He didn't hand out trust that easily. I was hurt. I felt so completely inaffective as more of the story came out and I realized how long he'd been in therapy and how long the abuse had gone on. At least he told, was heard and had action taken. Even if it wasn't by me.

I saw him later, as he was waiting to see his new therapist. I called him into an empty office to ask if he was ok. And to apologize for not being there for him. He said everything was ok. That he was alright now. He told me that he didn't tell me because he liked me, he knew it would hurt me, the new therapist didn't know him yet, wouldn't hurt her as much. He was just taking care of me and my feelings.

Somewhere in there is my error. I still rummage through it in my mind to find what I did wrong. And in this process, this new process for dealing with abuse when reported and in crafting ways organizations can change to reduce the possibility of abuse. I think of him. His big open smile. His genuine manner. As I worked through all the research on abuse, looked at all the recommendations for agency change, as I wrote the document that would lead this agency to make changes, often huge, in present practice. I think of many faces, but most often of him.

I could see the impact of his story on the group.

He gave me a gift.

I didn't give him enough.

But one day, when this journey is through and we've discovered a path to service provision and safety - when we've got the means to change policy and change practice to make the world safer for people with disabilities. We'll give that to any who want it. And maybe that will be my gift to him.

Tuesday, May 15, 2007


"Maybe you could help my wife!"

ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha

"Maybe you could help my kids!"

hee hee hee hee hee hee hee hee hee hee hee hee hee hee hee hee hee hee

"Maybe you could help me then!"

haw haw haw haw haw haw haw haw haw haw haw haw haw haw haw haw

Such frivolity.

Such fun.

And all because I answered the question, "What do you do for a living?"

I used to answer, truthfully, "I do sex therapy." But I stopped that when I would get serious looks - no laughter - and then get asked a question to which the answer was either, "yes it's totally normal - kinky, but within the range of normal" or "ugh, you might want to talk to someone about that." I stopped mentioning sex because I didn't want spontaneous glimpses into the lives of strangers. And besides, one day in an airport a total stranger wanted me to see a 'bump' on his penis to tell him if he should be concerned about it. I don't want to see the bump on a strangers penis in the airport. I never again said, "I do sex therapy."

So I settled with, "I work with people who have intellectual disabilities."

Then I got 'the' joke. The one that everyone thought so funny, "Maybe you can help _____ now!" Fill in the blank with 'me' 'my wife' 'my kids' 'my boss' 'my mother' any of a long line of responses.

And then there was the laughter, a kind of 'wink wink' laughter.

There seemed to be a real laugh and a half by comparing one's self, one's wife, one's kids ... to one of those 'intellectually disabled' people. The 'obvious difference' between self and other, I suppose was what they thought was so funny.

I never got the joke.

I never saw the jokester as that much superior to anyone I serve. I guess because I know that intellectual disability is only really about ability to learn. It isn't about character, it isn't about the important things that make a person valuable. So I didn't think the joke was anything but mean.

At first I feighned a modest but disapproving smile. But Joe said that that look didn't work on my face, I just look indigested.

Now I just can't take it any more.

That kind of mean humour makes me mad.

So now I just say, "I'm a social worker."

There's a conversation stopper.

Many people are afraid of social workers - that should tell you something.

I've done an average in my head that about as many people are afraid of social workers as there are people afraid of clowns.

I don't know what this means.

But it does mean that I don't get that damn joke anymore.

Monday, May 14, 2007

Two Words

It wasn't the flight we were supposed to be on but we were making do. We sat at the gate for hours filling time by reading books, flipping through magazines and playing tetris on a big blue plastic toy with a tiny grey screen. If we were children we would have gotten restless and whined. But we were adults so we just coped. In the next bay of seats, another flight delayed by weather also had passengers sitting for hours. I overheard a very creative mom and dad who made up a game for their kids - name two things that just don't go together.

The kids, one boy and two girls, kept trying to top each other with grossness. "Booger and Sandwich" yelled out the boy to the delight and disgust of his two sisters. "Harry Potter and Paris Hilton" called out his sisters who doubled over while their brother looked confused. They were having fun and the time was passing. I smiled because I knew what immediately came to mind for me.

Joe and I had stopped at 'the Tattered Cover' our favourite Denver bookstore on Saturday to pick up a couple new books and to have a tea in their cafe. Their "silver needles" white tea is a happiness drug and I have it every time I'm in Denver. Just once. As we had tea I grabbed a book on cooking that was on the shelf beside where we were sitting. I flipped through it and stopped stunned. I pointed to two words that do not belong in a cookbook of any sort any where in the world.

Poached and Testicle.

We boarded the plane, finally and backed away from the gate. On time. And sat. There was 'weather at the end of the runway' the pilot announced. The trick the airlines use is that pulling away from the gate is when the plane left. So you could sit for an hour an inch away from the terminal and it's still an on-time departure. It was warm on the airplane. The seats were cramped in a two and two configuration.

Comfortable and Airplane.

In the air I picked up a magazine a read a story about a child who suffered at the hands of her parents. Mother and father. They used her as a slave, viewed her as property, struck her 'as necessary. A few pages in I asked myself why I was reading this. Even the article seem to be exploiting the child. Her eyes looked out at me from the picture, the question 'why' formed at the back of her eyes. "I don't know" I telegraphed back to her.

Child and Abuse.

There really was weather. About an hour into the flight we began to bounce around a bit. I catastrophize. Why have a little worry when I can have a big one. Sure the bouncing was light. Sure I'd been through much much worse. I'd flown on older planes for longer distance through worse storms - but what matter all that, we're going down today! I thought back over my career and, as I always do, I remembered the closing of Pine Ridge. When all those men with disabilities came home.

Institutional and Care.

As we landed we waited 'until the aisle was clear' so that we could get off, get the wheelchair and get up the long ramp from the plane to the terminal. It took forever until the staff organized themselve to take three 'wheelchair passengers' from the gate to customs. The new Terminal One is, as far as I'm concerned, inaccessible. There are long, long hallways of carpetted flooring. If the floor was tiled I could push myself long distances, they had made moving sidewalks for 'walkees' but those of us in chairs had to fight against the flooring.

Wheelchair and Carpet.

Finally we had our luggage, our custom form and were making our way out into the terminal. Hours later than we had first planned. But we were there. Mike had been circling the airport for hours waiting to pick us up. He had been shoved from pillar to post by airport security and finally found a back street near the airport and just parked to wait for us to call. When we got out by the curb we called and he was there in minutes.

Joe and Mike worked quickly getting the trunk stuffed full of baggage, me stuffed in the front seat and the wheelchair stuffed in the back seat. On the way home we chatted about Marrissa and Ruby, about the work in Fort Collins, about the movies we wanted to see, about what we were going to eat, about missing Tim Horton's, and the time flew by.

My mood brightened and two words that go together well came to mind.

Happily and Home.

Sunday, May 13, 2007


It was just an accident. But my oh my did she get angry. Her little boy, maybe seven or eight accidently knocked over a glass of fountain coke. It splashed down his front, all over a coat that covered the stool next to him and landed on his mother's sneakers. Her face burned white hot. She bellowed at the boy for being clumbsy just as the owner of the coat returned from the washroom.

He took the scene in, he had to be eighty if he was a day, and asked if the pop had spilled on his coat. She looked at him, angry as if he had dropped it himself, and said, "Yes, it did."

He picked up the soaking coat and said, "This isn't so bad after all."

The boy looked at him relieved and then back at his mother terrified.

"He's always dropping stuff and knocking things over," she was on the verge of a tantrum, "just look at my shoes."

In truth very little of the cola had hit her sneakers. But it mattered not, she was mad.

"Let me give you some advice," the old man said conversationally, setting his cane beside his stool and climbing on as if it was not still wet then made his voice more demanding, "you'd better calm yourself down."

She snorted at him as if he was just a dottery old fool.

"One thing I've learned," he said meaning it, "is to save being upset for things that matter. If you get that upset over something like this. When something really bad happens all you've got left is violence. You don't want to be left with that as your only choice."

That hit her as hard as she had wanted to strike her boy, and she started to cry.

"It's OK, just don't go making the mistake that I did. Leave yourself room. Fury isn't for little things."

She wiped her tears and said nothing.

He took one last look at her, as if he was trying to see if she understood, then called over to the waitress, "Could you bring this boy another coke?"

Then he looked at the boy and said, "How about having it on me, like the last one?"

His mobile phone rang and he answered it, talked for a minute and got up and rescued his cane from where it rested against the stool. He put a bill on the table to pay for the coke and on his way out he stopped by the woman and pointed to the bill. "You can keep the change. Put it towards cleaning your shoes."

You could hear his chuckle as he made his way to the door.

"Thank you, sir," she whispered as he disappeared from view.

Saturday, May 12, 2007


I had an opinion. And it upset me.

This is odd because I have opinions about everything. But this time it bothered me.

The bar had a patio and it was a nice evening so we took our drinks outside. It was nice to relax and just sit and chat. Then I saw her. Right across from me. Knocking back a beer with ease and efficency. Then she picked up a cigarette and took a long drag stubbing it out in the ashtray when she was done.

Nothing unusual.

Except I'd never seen it before.

She had Down Syndrome and she was having a helluva time. She was with two other people, one of them obviously her boyfriend. They were partying. I did what I condemn in others. I stared. I couldn't take my eyes off the group. I figured that her boyfriend also had a disability but that the other guy did not.

Another round of drinks arrived at their table and she picked up her pack of smokes knocked one out and lit it quickly. In shock I realized that I had never, ever seen someone with Down Syndrome smoke. Or drink beer in a bar.

Never. And I've been in a lot of bars.

I tried to distract myself with chatter buy my eyes kept going back to that damn table. She was getting drunk for heaven's sake. She had that slurr of words that I've heard all to often coming out of my own mouth.

It bothered me. Weird. I've fought for the right for people with disabilities to grow up and become sexual beings. But somehow drinking and smoking just weren't really part of the equation.

I'm a hypocrite.

But I'm dealing with this. I realize that I have no right to an opinion over another person living their life fully in the community. None. The fact that I had 'caregiver brain' watching her pound back the beer and tuck into a couple of shooters while smoking a wack of cigarettes is just part of my heritage. That 'I know best' mantra that we all bring into this field.

Sometimes it's just none of my business.

Sometimes an opinion is really just prejudice.

Sometimes it's me that needs to be challenged and change.


Friday, May 11, 2007


There are reminders everywhere that I am in an area of the United States where there is a strong Christian base. Unfortunately, I don't pick this up because people are kinder, drivers are nicer, respect is everywhere. Oddly, one often gets cut off while driving by someone with a sticker of a small child praying at the foot of a cross. The name of Jesus is everywhere on bumper stickers - which is cool, everyone has a right to proclaim their faith.


And it's a big but.

I was rolling my wheelchair down the lane at King Sooper's grocery store and a woman approached me, her husband blushing behind her, and told me that she would be praying for me. Then she offered to 'lay hands' on me right there in the store and ask for Jesus' forgiveness.

And I went in to get raspberries, not tales of ressurection.

I thanked her and told her that there were others more in need of prayer than I was. That my life was fine. "Do you know Jesus, then?" She asked. Her husband looked at me with apology in his eyes.

"Yes, I do," I said.

"Really, and you're still crippled."

Now I was mad. I asked her to please leave me alone and that, when I got over my anger, I would pray for her. She looked confused. "My body is in a wheelchair," I said, "but my soul is free - it's the opposite for you."

That took her a moment.

"How dare you," she blustered.

"Well, how dare you," I returned.

"Come on dear," her husband pulled at her arm.

"At least I can walk," she spat at me. Spat!

"At least I am happy," I responded rising to the fight.

She was gone around the end of the aisle and I was left with my heart racing, tears in my eyes and guilt flowing through me. I don't know how to handle these situations.

Its a day later that I'm writing this and I still get tears in my eyes thinking of her assumption that my faith was invalid, that I was invalid, that I needed her prayers - as if God could not love me without her begging for me.

So, I did pray.

And asked God to forgive me my temper and my quick tongue.

And later, prayed again and thanked God for my temper and my quick tongue.

I think the last one was more honest.

Thursday, May 10, 2007


It's been in my head for days.

Ever since the conference in Vermont where I saw it. I think of it constantly because there are reminders. It was a tee shirt with a slogan on front. The slogan stays with me ... like a song I can't get out of my head. Things set it off.

There's a guy with a disability who works at the hotel I stayed at in Denver.

There's a woman with a disability who's taking care of child and family.

There's a group home for people with disabilties in my neighbourhood ... doors down from where I live.

I see the reclaiming of rights, reclaiming of society and reclaming of 'everyday life' by people constantly. I see the boldness in their eyes. I see the understanding of the importance of being out and being there. I see self advocacy in the very best sense.

Yes, people with disabilities are out and about, living community lives. It wasn't like that only short years ago. I went to a school as a child that had no kids with disabilities in attendance. I lived in a town where I never even saw a wheelchair. I watched television that excluded all put pretty white people.

Now they're here. Home.

And every time I see them, now, I think of the tee shirt I saw. It makes me smile and it makes me proud to be part of the movement ...


Wednesday, May 09, 2007


Sitting quietly, almost unnoticed by all, having a coffee and flipping through a magazine. Ordinary, every day sight. Nothing in her movements drew the eye. Nothing in her demeanour caught the attention. Nothing in her style gave a single hint. She was just a young woman reading a magazine and having a coffee.

I only noticed her because I was watching for Joe to return with the sack of books and magazine that he was purchasing at the till while I was scoping out a table in the cafe. To watch for him I had to look directly over her head. Thus she was in my sight line. And I didn't know.

Joe joined me, we got tea and settled down to browse through our purchases. The bookstore in Fort Collins was just a few blocks from our hotel and we'd decided to just relax here and then move in there. It was then she got up and went to the clerk. She asked for a pen. "Do you have a pen that I can borrow."

9 words.

Spoken a fraction too loudly.

Spoken a second before the clerk was finished serving another guest.

It was enough.

And we all knew. She had a disability. A mild one, but a disability nonetheless.

I had to cover my ears to shield them from the sound of expectations falling. I had to avert my eyes away from annoyed faces - not annoyed at the disability, but annoyed that she'd tricked them. Fooled them. How dare she 'look' normal and 'be' different.

Oh, and she knew. She saw the faces. It disturbed her, I could tell, that she'd been found out. That others now glanced at her with curiosity - maybe a wee bit of hosility. They hadn't liked being tricked. They liked the idea of living in a world where difference was obvious. Where they could protect themselves because of the obviousness of a Down Syndrome eye or a Williams Syndrome ear.

She sat down into a different social reality than the one she had stood up into. I could almost hear her curse herself for asking for the pen. For making the slip.

But as she sat there, she focussed again on the magazine and made a note in the column. You could see her jaw set. She put the pen down, picked her coffee up and then looked around the room. Daring people to meet her eyes. She came to me and I didn't break gaze with her, I just nodded and smiled.

I knew what she was doing.

She was reclaiming ground.

She was Rosa Parks at the front of the bus.

She would not be moved.

These are the acts of everyday heroics of people with disabilities. The tiny acts of social rebellion that will one day remake the community, retake the stage.

She finished her coffee. Returned the pen. And walked out of the cafe.

On her terms.

They had tried to shame her.

And ended in shaming themselves.


Tuesday, May 08, 2007


I don't typically notice my thumb.

This week, though, I have been thoroughly disabled for the first time in the year and a bit that I've been in the wheelchair. I don't know how it happened but I badly sprained my thumb. Suddenly, I'm immobile without help. I use my hands to push me about and can get from place to place easily and well.

Now I sit and wait while Joe runs into the store, or read the paper when he grabs lunch to bring it back to the car. I don't want him to have to push me everywhere, he's getting older too. So, I sit and mourn the loss of my thumb.

To look at me you'd think that I was disabled because of my legs but it's my thumb that brought me down.

Somehow this seems very important to me.

I can't tell you how many times, when doing assessments of others, that I haven't noticed the thumb. I can see the problem behaviour, that's easy. I can see the concern of those who care, that's even easier. But it's hard to see the thumb.

One guy I did a huge assessment on, had all sorts of ideas for why his behaviour had deteriorated. We investigated everything. He looked unwell, so he saw a doctor. He looked sad, so he saw a psychiatrist. Everyone had ideas. Everyone had plans.

So, after being called to his home to deal with yet another tantrum. Another outburst. I went and sat with him. Told him I didn't know what to do. How to help him.

"Change it back," he said. Crying.

"I'd change things back if only I could," I said, not understanding.

"But you can," he said, "everyone can but no one will."

I was lost.


"Can you show me what needs changed?"

He nodded and took me by the hand and led me to his room. I stood at the door and watched as he went in and turned on the radio. Rock music poured out. "Change it back. Please."

"You want your radio changed back?" I asked. He nodded.

Turns out we couldn't change it back. The station he listened to had changed formats and now, instead of country it played rock.

We found a country station.

We changed it back.

So did he.

The thumb.

I didn't notice the thumb.

Monday, May 07, 2007


Writing a post on a blog every day is a new challenge to me. It was easy for the first, say 100, posts. But then I had to tax my memory for nuggets and I found myself paying very, very close attention to what was going on in my world. As they say, "everything is copy" and that became really true for me. I store images away and hope that they will come together in an interesting way.

I was thinking about this last Sunday when we were downtown Toronto. I got the urge for a veggie dog and Toronto hot dog venders have the best in the world. We headed to a cart that we knew on Queen and Spadina. It was a beautiful sunny day and we had the windows down and the music up. We both felt 16 again - except in a much nicer car. We both still miss the dogs like crazy but we gleefully point out pooches we see on the sidewalk.

"Look, quick, over there," Joe said excitedly and I glanced to see a brindle dog of an interesting lineage. The dog was running with an odd lope. Then I saw that his bag right leg was missing. Gone. His gait was an adaption for his disability. But there he was, running hell bent for leather down the sidewalk. He glanced back, like something was chasing him, and I swear he smiled. Then he disappeared down an alleyway and was gone.

It was such a powerful image to me but I didn't know how to use it. I loved the fact that his 'dogness' was not even slightly compromized even though he was missing 25% of his legs. Sure, he'd adapted for the loss physically but psychologically, he was still just a dog. It was beyond cool.

I thought of the dog again when Joe and I went computer shopping the other day. I'm going to get a wireless laptop and we went into a store that sells electronics. These stores intimidate me and I immediately feel slow and stupid. Especially when kids, not old enough to shave, talk to me in a language I don't understand about things so abstract to have no meaning to me. I don't think I would have noticed at first if I hadn't been in the chair. He held his hands oddly as he spoke. Since my eyes were even with where his hands were I saw that one of the hands was formed very differently than the other. He did everything he could to keep that hand out of view. I understood why, I'm sure he has a long history of stories about that hand and the social reception it's gotten.

But I needed his help in getting to the computer I was interested in and he had to use that hand to pick it up. He blushed. I don't know if it was shame or fear, or maybe both. But I didn't give two whits about the hand, I just wanted to see the computer. So we talked and decided to buy a computer that we then find is out of stock. Great. But as we thanked him and left the store I just wished for a second he could have seen that dog running down the street. Just running. Just being a dog. To hell with everything but dogness.

Again I thought of that dog when I was at the Vermont conference, after my first presentation to people with disabilities a woman came up to speak to me. She typed on a keyboard faster than it should be legally allowed and then held the keyboard up and a voice spoke. She asked a question about the presentation. Then she said, "I like your blog" and introduced herself as Ballastexistenz. I flipped. I love her blog and told her so. She's a brilliant writer because she's a brilliant thinker. It was an honour to meet her.

We agreed to talk again later and we did. We actually managed to have a couple very long chats. The fact that a communication devise was used made no difference to the flow of the conversation and the sharing of ideas. It was exciting to talk with someone who views the world in a similar manner, who understands the nature of prejudice and further has a keen sense of personhood in a world that robs people with disabilities of that status. It was transformative. With a suddenness that is unusual to me, I trusted her and shared things I don't tell most. It was so easy to just 'be' with her.

Then, I remembered the dog.


Adapting with every step to a disability never forgotten but seldom remembered. For awhile I thought that that kind of 'state of being' was a 'state of mind' forbidden to us as humans.

I was wrong.

Sunday, May 06, 2007

The Boys

They were like puppies that spilled all over each other. There were four or five of them, it wasn't easy to tell exactly how many there were. They had come to the Vermont sexuality conference and were there to have a good time. All of them were still in high school and they roamed the hallways of the hotel like a pack of boys.

I met them in my first session for self advocates on abuse prevention and again in my session on building healthy relationships. They were so full of testosterone that their hormones clustered in the air above them. They participated, fully and loudly. They put the 'boy' in boisterous. They were, in a word, charming.

It took me a bit to figure out who they were though. You see I had read the brochure of the conference and saw that there was going to be a session on 'self pleasure'. Masturbation. A whole session. When I read the description of the session, I noted that there were five or six people listed as instructors.

During my first session with the boys in attendance the let it slip that they were teaching a session themselves the next day. Yep, they were going to teach the session on masturbation. Teen boys, masturbation, it's not a great reach to figure that they'd be experts on that particular subject.

So I joked with them about their session and they laughed and hooted. They all said they weren't nervous about the subject or the topic. Indeed they seemed to be looking forward to it. Something about this whole thing really got to me. I was thrilled that these kids were that sex positive and I was moved that they had wanted to teach others to love themselves, their bodies and their sexuality.

As it happened, I was doing a session for care providers in the next room to where the boys (and girls I find out later) were teaching. At first I heard bouts of laughter from the group as the session started. And then an eerie silence. Whatever they were doing over there, it was obviously being taken seriously.

I rushed to leave as I had a long drive home so I didn't get to see them again. But I thank them here. They gave comfort to an old guys heart. They assured me, in their own way, that things are getting better. That times, they truly are achanging.

Do you think, maybe, there really is hope?

Saturday, May 05, 2007


"That guy was good this morning."

It was a nice but odd thing for him to say. I was 'that guy' who had just spoken. I was to do another session and here he was sitting with me as the room was filling. I said, "I was the guy who did the presentation."

As a fat, bald guy in a wheelchair, I don't often have to identify myself.

He said, "Oh ...."

Then deciding to continue. "I was in a car accident when I was 16."

He pulled out a old wallet and flipped to a very, very old picture. "This was my cousin. He was killed in the accident, his head was severed off." I looked at the picture of a very young man and said that I was sorry about the accident and his loss.

He nodded and said, "I was in a coma for a long time and woke up with metal in my head." At that he pounded his head and I could hear metal where bone should have been.

"That's why I didn't remember you. I have short term memory loss."

Before I could comment, his face changed as if he was thinking of more to say.

"It took seven years of them telling me I had short termmemory loss before I finally remembered."

Then he smiled. I laughed.

"That's funny." I said.

"It is now," he said.

"Time makes a difference."

"Not to me it doesn't," he said laughing again.

"Yeah, I guess," I said.

"You need to laugh about these things because after a few years, they aren't sad anymore, they are just kinda funny."

The session began and he participated well.

Before I left I sought him out to say goodbye, he looked at me, "Do I know you?"

"Sort of," he said.

"I have short term memory loss," he said.

"I remember," I said.

"So do I now," he said.

And we both laughed.

Sometimes, it's just funny after a while.

It's something to remember when someone first comes disabled -- first come tragedy followed quickly after by comedy.

It just takes time.

Friday, May 04, 2007


They were exciting times. We were all there. All on a mission. It was a brand new group home set up to welcome people home during one of the first waves of deinstitutionalization. Every single staff had personal reasons to be there, to be part of the movement to bring people home. They must have interviewed well because every single one of us had personal passion and a zealousness about the job that was staggering. Not only that we were as diverse as a group of white people could be ... we came from different backgrounds and differing beliefs and divergent life situations. It all added to the mix.

And did we fight. And argue. And debate. We tossed philosophical concepts around with abandon. Staff meetings were full of opinion and dissent. People with disabilities, those who lived there were oddly the subject of the debates but never actually a part of one of them. We talked about Normalization and about Integration and about Freedom.

Long before Survivor ever aired we had camps and allies ... skirmishes and victories. There were those that were in and those that were out, and sometimes on various issues the alliances changed and the boundaries between groups became porous. It was fun, and healthy ... every opinion was aired, every point of view taken into consideration. We were growing as a group and as individual staff.

Then we were called in by the supervisor to a manditory - all in - meeting. We were informed that the subject of sexuality, which had been hotly debated, was closed. The answer was 'no' there would be no sexual expression allowed in the house. For weeks we had been talking about the residents right to have 'guests' in their room for 'private time' ... this was 20 years ago, we were ahead of our time we thought. Then it all collapsed, the discussion was cut short. Even those on the 'no' side were upset that management had just decided. All except one staff who, normally boisterous, was quiet.

We figured it out in the meeting and confronted her.

She was resolute. She admitted that she had been upset by the discussion and had gone to the supervisor and said that for her this was a 'workplace' issue and her rights as an 'employee' were on the line. She would be uncomfortable with the residents having sex and she felt that she would be working in a hostile environment if we adopted a liberal policy.

I was gobsmacked.

I still am, years later.

What happened to the idea of boundaries. I am me and you are you. It seems simple. What you do does not affect who I am. What I do does not affect who you are. I have a strong sense of self, I can be with people who have differing opinions and differing ideals even differing behaviours and not feel like my soul is under threat.

This should be especially true in the field of human service. To any population. I am here to create living situations where people can be who they are, who they were created to be ... I am not here to justify my values by imposing them on others.

There has to be a space between ourselves and those who we serve. A space to breathe and to differentiate.

There has to be a space between our values and our voices. Where we learn to harness ourselves for the good of others.

There has to be a space between our control and our grasp. Where we learn to subvert our inclincation to power.

I have to learn to restrain who I am, and the power that I have ... it should be a fundamental question in interviews ... how do you hold you back so that they can be freely they.

In between me and you ... there must be respect.

And, on my part, silence.

Thursday, May 03, 2007

Let Me Show You

"You know what really bothers me?" he asked. We all paused to listen, he had proven himself to both me and the group. He was a deep and thoughtful guy. Earlier he had spoken about how he almost never, as a man with cerebral palsy, got to finish his sentences. While he spoke with humour, everyone who heard him understood the message behind the words. "Respect me, listen to me, take the time to treat me as an equal."

So now that he had decided to speak again, we were all prepared to listen. It amazes me how, in sessions with self advocates, patient each is with the other. "It bothers me that when I go to a club or out for a beer I get asked, sometimes before I get asked my name, I get asked if I can have sex and how I do it." We were all shocked, then he asked me, "what would you say?"

It took only seconds before the answer appeared in my mind and on my lips at exactly the same time. "I'd say," I said, "Yes ... and let me show you."

The room roared with laughter. His hand shot in the air and then laughter poured out of him. "That's perfect," he said through gulps of laughter.

I'm thinking of him a lot today because I'm on my way to Vermont to give a talk about sexuality and disability to several hundred people - an exciting mix of self advocates, staff and family. somehow I want to represent him well. Speak to them about social castration of men with disability of sexual oppression of women with disabilities.

I remember doing counselling for a couple with a disability who had been married for years but who had not been able to have sex. Though they loved each other they had incorporated into their very souls negative messages about sexuality. They each wanted to be intimate with each other but they each feared sexuality deeply.

We explored those attitudes and found little bits of health and built on those. They learned to caress each other, hold each other, express love for each other in non-sexual ways. As the intimacy built as the 'heavenly permission' was granted, they expanded their exploration of each other.

Then they came in to see me with a twinkle in their eyes. They had exciting news, they had been together sexually for the first time in a five year marriage.

"It was good, Praise God!" she said.

And you, I asked him, "It was better than a slice of ice cream cake."

"Two slices," she said.

Reclaiming sexuality, reclaiming personhood, reclaiming joy.

All part of the journey.

Wednesday, May 02, 2007


Intense. Fierce, it was.

Ruby sat on my stomach, well I don't have a lap, and looked straight at me. Straight into my eyes. Like she was transfixed, her gaze bore into me. She wore a knitted cap, bright orange sun glasses and a plug was firmly in her mouth. After a few more seconds, her face slowly began to change. Uncertain at first, then a big, big smile. It was the first time that she recognized me, knew me for who I was.

It was a lovely feeling. Being seen. Being recognized. But even so it was slightly, oddly disconcerting.

It's happened before, of course, and of course as is the nature of the beast, it happens rarely.

I particularly remember a day many years ago doing a counselling session with a frail young woman with Down Syndrome. Pain spilled through the hole in her heart and talking with her was like wandering aimlessly from one fresh ordeal to another. I sought the source of the river of tears but never felt even vaguely close. Till one day she lowered her eyes and spoke, "You know don't you?"

It wasn't clear what she was speaking of, or who she was really speaking to, "You know."

I asked her, gently not wanting to break the moment, what she meant.

"Being hurt, you know."

Breath caught in my chest. Of course, I knew. I fled across country, within my own flesh, fled the demon of memory. "And you know too," I said.


That was the word that bonded us. We knew each other. We recognized each other. Though victims may be outwardly different - there is an inner comradeship. Something others can never really understand.

She didn't get better. She didn't heal. She lived with her pain in her way as I lived with mine in mine. But when together, we were safe - one with the other.

But it was a moments recognition.

To be seen. Recognized.

It doesn't happen often. He was being wheeled by in his chair as I was being wheeled in mine. We had forgot my wheelchair gloves so I couldn't wheel well myself. The person behind him was engaged with in a different world and he passively sat. Our eyes met for an instant and in that instant there was recognition. A vague smile crossed his face - a greeting I've seen now many times. Just for a moment - seen. But not just seen, recognized as sharing difference. The safety of a glance without fear of the hostility of the stare.

Ruby soon broke gaze and discovered the knobs on the radio in the car. This was something much more interesting so she leaned way down to grab at them. My hand was holding her, keeping her safe as she tugged and turned at the controls. Her weight settled, she had recognized me, known she was safe and then turned back to the world.

It happens rarely.


Tuesday, May 01, 2007

Blog Against Disphobia / Disablism

May 1st - Blogging against disphobia (disablism) day

Please participate through your comments, also drop by Diary of a Goldfish ( to see the list of blogs participating and visit other disability blogs and let them know what you think, encourage dialogue - celebrate difference, diversity and disability.

My Blog to Note the Day:

Suddenly I understood exactly what she meant.

I had gone grocery shopping with friends at our local A and P and when it came time to check out there were three lines open. The till that is accessible wasn't one of them. This meant that I had to give money to my friends and then roll around and meet them on the other side because the aisleway was too narrow. I stopped at customer service and asked to speak to the store manager. He came, huffing, puffing and carrying boxes, up to the counter. The clerk indicated to him that I wanted to speak to him.

My point was simple. If they were only going to have one till open, it should be the accessible one. It isn't a hardship to the store, to their employees, to anyone. It's not a 'special' adaption they have to make for me. It's just thoughtful. And appropriate. And the right thing to do.

He nodded. Vacantly. Muttered something about me 'having a point'.

I let it go. He said the right things. I just knew he didn't care. Wouldn't do anything about it.

So I understood what she had to say.

It was at the self advocate conference last week that I met her. She came up to the podium where I was seated during the morning break. She was short, dark-haired and determined. In the morning session people had called out various things that had made them feel ... glad, sad, mad and scared. It was just a quick exercise to affirm our right to feelings and our right to express how we feel.

She must have put her hand up, I must have missed it. No surprise, it was a huge room and she was a tiny woman.

As I was on a stage, she peered up at me and said, "I have something to say." I smiled and bid her go ahead. I was curious as to what had brought this woman with Down Syndrome up to speak to me. "What makes me happy," she said, brushing away tears. Suddenly she was crying and had to stop. I was confused. She was going to talk about something happy, but tears were falling.

After a minute or two, she pulled herself together.

"What makes me happy, is when people listen to me. Not just nod their heads, but listen to me." And she was crying again.

"They don't listen much, do they?" I said.

"No, they don't," she said, "But when they do it makes me really happy."

I asked her if she would like to come up and do a roll play in the second part of the morning workshop and she said, shyly, that she was a little afraid to be in front of everyone. I suggested she try and instead of looking at the crowd, all three hundred of them, she could just look at me. She agreed to try.

She came up and did a role play about saying 'no' to a bus driver who tried to grab her. When done the crowd cheered her. She wasn't so small anymore. As she turned to leave she said, "They listened."

I winked at her and she broke into laughter.

"They don't listen to us much do they," I said in my heart - telegraphing my sentiment to her across the miles, she in Missouri, me in Ontario. Somehow it doesn't matter if she heard me, it only matters that she understands. "They don't listen to us much ..."

But they will.

One day they will.

Because we've had the dream.

One day, together, we'll have the power.