Dangerous Dave

I'm waiting.

Joe has gone to park our car and we are picking up a rental at the airport. We have two days of lecturing in Maryland ahead of us and we're going down a day early to give us time to travel. I'm feeling better and the last bag of IV antibiotic has been done, the IV removed. It's the first time in days that I've been free to push myself around in my chair.

After only a few minutes of waiting, I glance around at the other rental cars and notice a car that I don't recognize. I like the look of it so I decide to use my new found freedom to go and investigate. I pull up beside the car and examine the interior, nice. Then I roll around behind to see what kind of car it is, it's a Charger. Nice.

I go back to the car we've rented and park beside it waiting for Joe. A few seconds later a man approaches me, white shirt and tie, looking severe. "May I ask what you are doing here?" I could tell from his tone that he was being polite but also demanding an answer. I explained that I was waiting for Joe to park our car and come and get this one. "You didn't fly in?" he asks and I explain that we drove in. "Why were you prowling around the cars?" Prowling? PROWLING? I didn't know you could prowl in a wheelchair.

"Don't be silly," I said laughing.

He didn't laugh.

"Answer the question," he was deadly serious.

"I hadn't seen the new Charger and was just taking a look at it while waiting."

He nodded, considering what I said then he changed his tone and said, "I'd prefer it if you just waited here for your friend rather than wandering around the other cars."

"Sure," I said and he left.

I sat there realizing that he was checking me out as a possible terrorist threat at the airport. Here I am, old, fat and in a wheelchair and this guy is thinking that my actions made me suspicious! I grinned. I felt like an action figure - a villian in a bad movie. It was oddly kind of cool. I totally respected that guy for what he did, I so didn't mind being checked out. I know, if anyone knows, that wheelies are just as much a product of culture as anyone else - and so did my inquisitor. Taken seriously - that's what we want, that's what I got.

I'm going to feel safer flying out of YYZ next time.

Dangerous Dave ... over and out.

Grandma

We were both male, of that I was sure, but I'm not sure that a casual observer from Mars would have picked out that we were from the same species. I had rolled in to the lecture hall in Peterborough to get myself ready for the presentation to the Down Syndrome Society. I parked at a table beside the lecturn and got my notes out. OK, ready. I was sharing the keynote with another guy and he was getting powerpoint set up. I remember when I first heard the term 'powerpoint' I thought it was a sex toy.

I was looking a bit like a derelict given that I haven't shaved for 5 days. I had the IV line in and they begged me to barely move my hand and wrist and to keep it dry so that it wasn't likely to slip. It had been hard to get in and it hurt like hell so I followed these instructions to the "T" so no shaving. The infection was on my leg so I wore my old and worn out fat pants that were faded, ripped and had huge legs. I looked like I crawled out of the gutter the night before.

And here was my co-presenter handsome, looking like he had been personally groomed by a bevy of blond Swedish spa attendants, trim in a nice blue suit. He notices me sitting with my notes in front of me and after he has everything set up for his presentation he comes over to introduce himself to me, his daughter Melanie joins him and she is a delightful young woman with Down Syndrome and was, it turns out, a big part of his presenation.

He jokes a bit and mentions that Melanie, by the end of the day, will know everyone in the room and will have facts tucked away about each person she meets. As if on cue Melanie tells her Dad that 'that woman over there is engaged'.

But then he said something that really struck me, "She gets that from her Grandmother."

In a simple sentence he claimed his daughter as part of the heritage of his family. Her personality and her social charisma were formed, in the womb, by influences not from an extra gene but by an existing 'grandma' gene. Melanie was who Melanie is because she comes from him and his - she continues tradition.

Later on in his presentation he shows a picture of Melanie's grandmother, she is sitting in a convertable with the top down and looking at the camera with a 'take no prisoners' look in her eye. That she was full of life is clear. I glanced from the picture on the screen to find where Melanie was sitting in the audience, she was looking at someone on her left and I caught her face.

And saw Grandma in her.

It's true then, it's about the genes.

Grandma's genes.

JoAnne's Blog

"Um, Joe, I'm uncomfortable with this."

"This is what they want us to do."

"No, really, I'm uncomfortable with this."

We are in a car driving on a lawn, down a steep hill, steering between trees. I'm supposed to be presenting for K W Hab at their annual 5 0aks conference. It's a high point in my year as I love these guys. But JoAnne is insisting that we drive over the lawn and park somewhere down by the patio. Its clear that this lawn isn't made for driving, the car is at a precarious angle and I'm now sweating.

"I don't feel comfortable with this." I'm speaking this way because I was reading an article in O magazine while waiting at the hospital. Someone was writing about respectful communication and rather than say, "Turn the #$%^ing car around right #$%^ing now," which they say is effective but rude, I'm supposed to say, "I feel uncomfortable with this."

Now we are stopped on a little dell overlooking the side of the building and we can see the patio in the distance. JoAnne is wearing an orange teeshirt and is wildly gesticulating that we continue down the lawn. Joe has this glazed look on his face, it's the one that says, "This is stupid but I don't want to upset JoAnne because she's so nice." Joe given the opportunity to choose between upsetting me and upsetting someone else, always figures I'll forgive him anything so he opts, like always, for pleasing JoAnne.

Finally I resort to, "Turn the #$%^in car around we are driving on grass, on someone's lawn between decorative #$%^ing trees. The building has an elevator, we can use the elevator to get down."

Joe looks at me and says, "JoAnne is really nice but what possessed her to have us careen over lawn and garden?"

I know exactly what possessed her.

She tried to figure out exactly how my visit could be made better, the building more accessible, the experience more memorable. She was thinking outside the box, much lauded but often inadvisable, and came up with this slightly demented plan.

As we said goodbye, JoAnne said, "This is going to be a blog isn't it?"

Yep.

NO WIRE HANGERS

Well, that was odd.

After checking into a hotel who's concession to disability is sticking a toilet insert onto the toilet, we were both grumpy. Accessible should be accessible, it shouldn't be perching on a tiny toilet insert. Oh, well, that's not the big deal. The big deal is that they had no regular wire hangers. They had the kind of hangers that have a nub that fits into the hanger that hangs permanently on the rod.

We had expected hangers.

So, I'm on IV antibiotics and yesterday we learned from a nurse who wasn't into teaching but was supposed to instruct us how to do it. She did it quickly, commenting that she had dinner waiting and she was called in because someone else was off sick, and the fuel light on her car was on and she rushed out without her purse, and she wanted to get back for her dinner. In amongst her, I became a nurse to be able to subject you to me, babble we asked a few questions and thought we had it figured.

We didn't. We were here in the hotel with a line that did not run and a drip that did not drip. Finally we called for support and got a nurse who took all the time we needed and we discovered we'd missed only one small but vital fact. It must have been lost somewhere between learning she had four children and the fact that her supper was waiting. So that done, we looked for a hanger to hang the bag so I could get the IV.

No hangers.

So for about 30 minutes Joe stood on a chair holding the bag above his head. I simply sat and watched the bag slowly drain. Joe remarks that we'll find this funny one day.

Uh, huh, sure we will.

But I'm getting better, the antibiotics are working and the promised nausia hasn't been part of the recovery. So Joe standing on a chair in a hotel with a bag held up over his head will be one memory I'll hold on to.

He looked a bit like The Statue of Liberty holding torch high.

He looked a bit like Florence Nightengale holding lantern aloft.

But mostly he looked like a guy who'll do anything I need when I'm truly in need.


I'm a little glad that there were no hangers, because that's what I needed to see tonight.

What He Needed to Hear

It was almost a five hour wait in a long, long hallway. I just buried my face in a book, Joe did the crossword beside me, and the time slowly passed. We were parked near the head of the line up because of the wheelchair so we only saw four or five people close up and we all compared wait times and joked about growing old in the hallway. What would they do with an actual emergency we wondered?

I finally got called in, never in my life have I been more pleased to hear the words "Dave Hingsburger" and I quickly put on my gloves and pushed my way into the examination area. There were several rooms, mostly separated by hanging curtains but I was placed in one of the few actual rooms. I had to see the doctor and then wait for the nurse that would install the IV line to get antibiotics. It was a wait of another hour for the nurse - they wanted a specialist because my veins are deep and hard to find. As my room was near the entrance I saw most of the others as they were called in. all looking, like me, like they'd won the emergency room lotto.

A blond head streaked by followed by and Dad rushing after his son. The son stopped and ran back to his dad, he'd have been 6 maybe 7 years old, he was like a colt let out of the stall and into the yard. He turned and I saw that he had Down Syndrome. I waved, stupid I know being a stranger and all, but he didn't see me. Thankfully, because I did exactly what the Dad didn't want the doctor to do.

They were placed in the curtained room exactly opposite to me. I was sitting in my chair in the door of my room waiting for the specialist nurse. Dad got son settled in the room and you could hear the murmur of their chat as they waited, now for the doctor. When the doctor arrived, a bright and enthusiastic young woman, Dad took her arm and guided her out of the room. He pulled the curtain closed and directed her away from the room. Her face showed shock and maybe a bit of anger.

Thankfully he directed her closer to my room where I sat, yes, listening. Dad then said, "There are some groundrules you need to be aware of before you meet my son. He has Down Syndrome but he's here because he's hurt his arm. He didn't hurt it because he has Down Syndrome, he hurt it because he's an active kid, so let's not even talk about his disability. Also, he's old enough to speak for himself, ask him, not me. I'll help when necessary. His name is Peter, not Pete, not Petey, and definately not 'sweety'. I'm trying to raise a kid who's confident. Treat him that way."

The doctor started to protest that she didn't need a lecture about ... and he stopped her. "Listen, you may be the one professional in a million that would see Pete as a little boy. You might not have needed this talk. If you're that professional, I apologize, but my job is to protect Pete from the rest of them. All I want is respect for him. I want him to learn what respect is like, become addicted to it. So, I'm sorry."

She looked at him and simply said, "You're a good Dad."

Day Off

This will be a very brief blog. I spent 8 hours at the hospital yesterday and am still tired from the experience. The real trouble though is that they've bandaged my right hand to the point that my fingers are virtually unusable for typing. I needed to get an IV in for antibiotics and I'm what's called a 'difficult poke' so once they got the line in they wrapped my hand in gauze in order to keep it from moving. Home care is going to show up today with bags of IV antibiotics and a nurse to teach me to do it myself. OK, cool, I can do that.

What I can't do is type very well.

And pushing the wheelchair is out for the next five days.

What's frustrating is that I have a couple of blogs I want to write just from the experience of being there, but they'll have to wait. When home care comes today I'm going to see if they can cut back the bandaging just to free my fingers. So, for today, I'm giving myself the day off from blogging. If they won't remove the bandage Joe has volunteered to type my blog in for tomorrow.

See ya then.

Emily

She came from around the corner and caught my eye. My breath stopped. I hadn't seen her for six or seven years. I didn't think she'd recognize me, we'd met during an emotional and traumatic time for one, I was now in a wheelchair for two. But when her eyes met mine the recognition was instantaneous. How could I have thought she'd have forgotten?

I was called in for an emergency consultation. A woman with Down Syndrome had been raped by a care provider. After the police interview she had asked to talk to someone and I was called. I wondered aloud if it would be better for a woman to speak with her, if my size and my gender would be too difficult for her. So much had happened, the rape, the report, the response. Now she was asking for something for her, I wanted to make sure that I would do. She said she didn't care if she spoke to a man or a woman, she just wanted to talk to someone.

The police OK'd the conversation but asked that I be supportive without questioning. I know the drill, I assured them that I understood and wasn't interested in investigating, this was about support and that was all. They told me that she'd been worked over pretty badly and to be prepared for what I saw.

You can't prepare.

Her face had been bludgeoned. Her eyes looked out past swollen and torn tissue. She did not cry. We were given some privacy and I began by asking a stupid and silly question, "How are you?" and immediately followed that with, "I'm sorry, I can see that things aren't good, do you want to talk?" She told me that she did.

She didn't talk about the assault, my mind was bursting with questions but I knew I could ask none, my will wanted to assert itself and take the conversation away from the everydayness of what she was telling me, but I knew that this conversation was hers, not mine. She was talking about her job, how much she liked it, about the people there and how much they liked her. She talked about her mom and her dad. He had died a few years ago but her mom still came and visited her. She talked about her favourite television shows and even laughed when talking about how silly Simon was on American Idol. She talked and she talked. She never looked at me much, glancing every now and then to assure herself that I was listening.

And I was.

Because I had come to understand what she was doing. She was asserting to herself that she had a life that she loved. A job and a family. Television shows and Taco Bell. She had been raped. She had talked to the police. But the world was still there, unchanged. Waiting for her. She had taken control of her own healing. She demanded little from me.

At first.

Then she asked me if she could ask me a question, and I told her self to go ahead. "Do you think I'm a dirty girl now that I've had sex?" Now the tears flowed. She had assured herself that the world still existed and now she wanted to know from me if she still fit into that world. The world where she had a place, belonged. Could she go back to that world, or was she now unsuited for it?

"You haven't had sex," I told her. Once again I had to shut my mind up, I wanted to talk to her about the idea of sex being dirty, that our sexuality is normal and part of us, but that's my agenda, she had a different one. So I stayed with, "You haven't had sex." She looked up at me confused, then she explained that he had put his penis into her. He had hurt her 'down there'. That was having sex. I told her that rape was not sex. That rape was rape. That she was not responsible for what he had done. It's all stuff we know. It's all stuff we hear on Oprah and on Dr. Phil, it's in every plot of Law and Order: SVU. It's part of our culture now. But it wasn't trite here. With her. She listened to me deeply. She asked a few more questions and I could see her process the news that she had been attacked but that the attack did not define her.

"Then, I'm still the same as before?" She asked with hope in her voice. I told her that she'd had different experiences and bad things had happened to her but that 'yes' she was the same as before.

"Thank you," she said.

I saw her one more time, several months later. She had asked to see me again and we got together for a coffee. Her face had healed, all except for what turned into a permanent bruise below her right eye. Again she talked about her life, her new job, her new home, and then she told me that I had been right, that she was OK and that she was the same girl as she had been before. Then she put her hand on top of mine and said, "If it happens to someone else, tell them that Emily's OK."

And now, here she was looking at me. There was a woman with her, a staff I'd guess, she patted the woman's hand in the way that meant, 'Stay here.' She walked over to me and asked if I was OK. I told her that I was in the wheelchair now. But I'm still the same as before. She smiled, the 900 watt smile that only those with Down Syndrome can do, and said, "So am I."

Prue, Ruby and Rose

I'm reeling a bit. I've just finished two books in a row that have people with disabilities, differences as not only primary characters, but as narrators. I read them, accidentally, in probably the best order though I'm not sure it matters. What's astonishing about the books is that they were written in different centuries but document the social phenomenon of disphobia and disablism - occurring in much the same fashion.

Both books have female leads and both books treat their subjects with kindness but not reverence. They are fully formed people, all of them, they react to their disabilities in similar ways and they grow wary of a world that cannot see them as fully human. They stand apart, and this perspective allows them to comment on the human condition in bold new ways. I'm being very cautious in what I say because I hate when I read spoilers that give away plot points.

I hereby challenge those readers of Chewing the Fat who are up to it, to take on both books and then give commentary. I'd love to hear your opinions. Here are the books:

Precious Bane by Mary Webb first published in 1924

An amazing story but a difficult read. I wouldn't have made it through the book if I hadn't fallen head over heels in love with Prue Sarn the primary character. Prue was borne with a 'hare lip' and as such was deemed an outsider, a witch, the devils consort. But the book really focuses on her relationship with her brother and mother and then her falling for a beautiful man, a weaver. The story documents her longing to be held and touched by this man, her knowing it wasn't possible, that the mark of difference on her face kept her from beauty - thus desirability. What makes this book hard to read is that it's written in the language of the times and the patois of North Shropshire in England. The spelling is difficult, it took me awhile to figure out the 'enow' was 'enough' and there are hundreds of these words. But by the host of heaven, the story did catch me and I had to find out what happened to Prue.

The book has an introduction by then Prime Minister of England, Stanley Baldwin. I beg you not to read this till the end. I read it part way through and was horrified to find that Balwin gives away a huge bit of the story - I was furious and warn you off the introduction.

The Girls by Lori Lansens published 2006

This is the story of two sisters, conjoined twins. The book is written primarily by the character of Rose but with chapters from Ruby. It's impossible to read this book and remember that it's fiction. The characters are so whole, so rich and so complex. There are several 'put the book down and swoon' moments, which I'd love to tell you but I'm using that restraint the doctor always suggests that I use more often. The overlap with Prue's story, in descriptions of public reaction are disturbing, this is almost a century later. Surely we'd learn. Surely.

The girls were adopted by an amazing couple and their mother told them that in every ordinary life is an extraordinary story. What's amazing here is to find that in an extraordinary life is an ordinary story. These women, though attached, become separate in your mind. These women, though different, become singularly human.

These books represent the best of what can be found in 'disability literature' if there is such a thing. The characters are not used by the author's they are served by them. Each book ends beautifully. I will always remember the last line of Precious Bane. It chills me and warms me even at the mention of it here.

I am truly grateful to have found these books, truly grateful to have had the opportuntity to meet and spend time with Prue, Ruby and Rose.

Fall Fair

We drove down the narrow country lane on the way to the fall fair, the day was gray but the leaves shone as if lit from within, the air smelled autumn fresh - the morning had the feeling of unexpected pleasure. As we approached we saw signs directing us to where the event was being held. We are neighbours of Camp Hill and I've done some training there but in the five years we've lived here we've never been around for the fair.

A man with Down Syndrome wearing a slicker to protect him from the mist that would soon turn to rain stood and pointed, his arm extended rigid and straight, his finger indicating the place to park. He was full of the importance of his job. It was like he seldom had the opportunity to tell others where to go and what to do, he was a sentinal. We needed to drive by him, ignoring his directions because the parking was far from the building the fair was held in and I needed to be dropped off in my wheelchair.

I was waving to him, smiling, trying to let him know that we weren't ignoring him. That wasn't good enough for Joe who pulled the car up and let down the window. "I'm just going to take Dave up to the building and get his wheelchair out, then I'll be back with the car. Is that OK, with you?"

He looked startled.

But then he began to think. Joe was asking him for permission, he had to decide if he would grant the permission. He leaned forward a little and looked into the car, he could see the wheelchair in the back. The then looked over to where the parking was. Then he closed his eyes for a moment.

We simply waited.

He opened his eyes, and nodded that it would be OK for us to take the car up, then to guide us he raised his other arm and pointed the way.

It was only a small moment, maybe not worth mentioning. But it was a small moment for us, I think a bigger moment for him. He had been put in a position of power, his authority had been respected, it was up to him what happened next. As we drove away, I looked back to see him standing, arm stretched out pointing at the lot again.

He seemed just a little taller.

Control

Everyone was a little bit shocked. They all looked at me like I was an unreasonable, errant child. "Well, if that's what you'd like," she said as she got up and left the room. The nurse, who sat across the desk from me sat waiting an explanation.

What had happened was this ...

I had just spent about an hour with the endocrinologist who had asked me a thousand personal questions ... including about my pee pee ... and I sat answering all of them, uncomfortable and shy about some, upfront and forthright about others. She sat writing things down in my file showing little or no reaction to anything I said. Well, except maybe mild disbelief when I told her that the rise in my blood sugar was not related to diet. I've been quite rigourous and my sugar had been well under control until the last six months when no matter what I ate, it was high. When she was done, I was scheduled to see the nurse who would teach me how to give myself insulin injections.

That meant another wait in the waiting room. An elderly disabled woman had a bit of a heart thing and then when that was settled returned to her book. Joe did his crossword and I sat there thinking about how my life had just changed, yet again. I had desperately wanted to keep the diabetes undercontrol with diet and pills but that had failed. I don't like needles particularly and could not imagine giving myself one.

The nurse came, bent over me as I sat in my wheelchair and said, "Well, we're going on insulin are we?" I was immediately annoyed. Firstly, 'we' aren't 'I' am. Secondly why should everyone in the waiting room know my business? I said nothing and we all trooped down a long hallway to an oddly shaped office at the end.

There was the nurse, then Joe beside me and a woman I had not met and did not know sitting in the chair behind me. The nurse launched into her spiel without introducing either herself or the woman sitting behind me. I put my hand up indicating for her to stop. She did, a flash of anger crossing her face. "Who is the woman sitting behind me?"

"Oh," answered the woman behind, "I'm a nurse from the hospital and I'm just here today to see the services offered through the diabetes clinic. I'm just sitting in, if that's ok with you."

Well, it might have been if I had been introduced to her and been asked. It might have been if the nurse had even bothered to introduce herself to me. It might have been if the nurse hadn't blurted out private information in a public forum. It might have been if she was sitting where I could see her. It might have been if I was doing anything but learning how to give myself a needle and was afraid I was going to weep like a toothing child.

"No, it's not," I said, "I value my privacy."

All eyes looked at me in shock. Even so, the observer left. And the nurse began again, a little more careful know, seeing that she had a patient that wasn't in awe of it all, wasn't captituatling to everything.

I put my hand up again. She stopped. "Who are you?"

"I told you I am the nurse," she stated.

"Surely you have a name."

"I already introduced myself," she said.

"No, you haven't."

Introductions over we continued.

There is so little room for personal control as one enters the world of disability. So little room to assert what's yours. So little privacy. So little respect for boundaries. I was tired when we left, but was glad that I'm a cantankerous old guy who still knows how to speak his mind. I'm glad that I left with a little bit of me preserved, untouched by question, unobserved by prying eyes, undocumented in a file.

Nitro

"I don't think she's well," said the woman with the walker by the door and we all looked up. I from my newspaper, Joe from the crossword puzzle. It seemed everyone had brought things to distract themselves from the wait. All eyes fell on a very elderly woman, holding on to her chest, trying but unable to speak. Doors of offices flew open at some invisible call and soon she was surrounded by health care professionals asking questions about mediations and nitroglycerin. The crisis seemed averted when her colour came back, her voice came back, and her had left her chest. "Make sure you tell the doctor about this," said one nurse and the elderly woman simply nodded.

One by one people went back to reading, knitting, crossword puzzling. I hadn't been all that involved in the paper so I just glazed my eyes and sat aimlessly watching others in the clinic waiting room. After four or five minutes, the woman at the center of the crisis picked up the book she was reading. I glanced to see the title of the book, something I've done since I could read. At first I couldn't see but a few minutes later she shifted in her seat and the cover of the book came into full view.

I tried to get Joe's attention but he was busy with this crossword and 'in the zone'. It was one of those romance novels that have a lurid cover. We've all seen them. There was a strong, handsome man towering over a busty woman holding her. His shirt is ripped open so you can see he has a nipple the size of Montana and tectonic pecs. The muscles of his arms, visible through another tear, ripple with restrained strength. The woman looks at the man with a mixture of fear and love her breast strain at the cage of clothing and her face lifts as expecting a kiss from his handsome but cruel face.

Oh my.

Did you know that there are only three words separating 'lurid' from 'lust' in the dictionary?

She reads quickly there in the room where her heart was just medicated to keep it going. Turning the pages rapidly her face colouring, her hand going to the throat, I just knew she was reading about heaving breasts, lips meeting and 'heaven forfend' thrusting.

A smile crosses her lip as she dabs at her forehead with a tissue. She's in a different land now, not one of medical smells and others waiting. She looked up only briefly when I was called to go in and see the nurse.

On the way out, she was still here but completely involved in her lusty, lurid book. Her eyes sped along the row of words and even though there was a bit of a fuss getting the wheelchair past a stack of boxes that had been placed near the door, she never looked up. Never left the world where men with flowing hair and arms made for ripping trees from the ground loved women with dark glasses and breasts forever perky.

There's life in the old girl yet.

Don't let the oxgen tank fool you. Don't let the crocheted shawl distract you. This is a woman who is still very much alive, living well within her body and mind. And let's make it clear, the everyday disabilities of the old affect not the desire for desire. There are some gifts given that can be freshly opened, even after taking a nitroglycerin

Taking Note

When I was in University, a generation or two ago, I took a course entitled, "Mental Retardation 1" which was followed by a course entitled, "Mental Retardation 2". It would be years before we, here in Canada, stopped using those words and begin a relentless search for 'what to call it'. But that's the stuff of another post. Taking those classes marked the beginning of my formal training in the field of intellectual disabilities. But the subject matter wasn't disability, it was 'deviance' and 'difference' and 'disgust'. The professor only ever spoke of 'other' of 'lesser' of 'object'.

This was particularly true with a film that we saw. Like any other university students, when we all came in and saw the projector set up we were mightily relieved. A break from the lecture, it didn't matter if the film was a dull as the lecture, the lights were off ... you could snooze. None of us snoozed. The film was about 'syndromes' and to make that clear let me be clear, it wasn't about people with syndromes, it was about 'syndromes'.

I was horrified. A man in a white coat with a long wooden poker stood and talked about various syndromes. He began with 'Down Syndrome' as 'one of the most common' and after talking about the extra chromosone another man, also in white coat, pulled into camera view a naked teenager with Down Syndrome. There was terror in his eyes as he stood there, naked, while the professor pointed to his body and discussed how the 'syndrome evidenced itself'. Vomit rose in my throat, not at the physical difference - but at what I saw then and now as the casual nature with which power was exercised.

The point of the film was clear - they were OTHER, DIFFERENT, DEVIANT. Their existence was tragedy. Their lives were a waste.

Even as I began working in the field, many staff spoke of OTHER, DIFFERENT, DEVIANT. And I wondered if I'd live long enough to see the day ...

And I have.

A few days ago a woman I know well came into my office grinning. "You know my daughter is pregnant," she said, beaming. I totally get how pregnancy and childbirth are miraculous and exciting, so I smiled back and told her that, yes, I did know.

She then went on to tell me, the smile never leaving her eyes, that they had just recieved the news that there is a pretty significant likelihood that the child will have spina bifida. The positive test result had been followed up with a discussion with a genetics person and her daughter simply decided not to confirm the test with more tests but to simply proceed with the pregnancy. The family knew someone with Spina Bifida, someone who lived a whole and good life, and the news was greeted with interest, but without alarm.

"Big deal," they all thought.

We sat and chatted, soon to be grandmother and I, about her daughters casual response to the news of disability. And as she talked, I remembered. A young woman, standing naked, at the end of a poker. A doctor talking about how Spina Bifida, 'evidenced itself' on her body. I remembered people taking notes about syndromes but not taking note of her.

But times have changed. People have emerged, peeking around their disability to see that it was safe, into the real world. Kids with Down Syndrome, and Spina Bifida, and Cerebral Palsy are going where they were never allowed to go ... home.

And the world has changed.

For one baby at least.

The world has changed.

Still Mad

Several weeks ago Joe and I are grocery shopping on the way home from work. I am in the narrow passageway between tills waiting to pay. Three of the stores employees are joking at the Customer Service desk directly in front of me. The produce manager laughs at something that the clerk said and remarked back, loudly, "Don't be such a retard."

Retard.

My temper flew out of me. "Watch your mouth."

The manager turned and saw me but had no idea what had me so riled, "Pardon me?" He asked.

"I can't believe that you would use that word, here. I come into this store as a customer and I have to sit here and listen to a bigot spewing hatred." I was really, really, mad.

He gets offended, "I said no such thing." He didn't know what I was talking about but slipped into an aggressively defensive mode - a mode common to bullies.

"Don't even try to deny that you used a hateful word to describe someone with a disability."

"I think he means, 'Retard' boss." The clerk said, hoping to be helpful but adding fuel to the fire.

Then they both got an angry and loud speach about the use of hateful words about disability. That I as a disabled customer should not be assualted by that kind of hatemongering trash when I come into a store. I let them know that I knew, and liked, people with intellectual disabilities and that I found it outrageous that they could use that word.

"We didn't mean anything by it," said the third of the three.

"The word has meaning attached to it, you can't will it away."

The whole store was quiet. Everyone was listening. I asked for the manager's card. I got home a letter went off that day to the general manager of the store and to the head of personnel for the chain.

God bless the letter.

Well, I got an answer in today's mail. It was a wimpy apology, said that the store employees didn't understand the hurtful nature of the word and that, not to worry, they'd have a training session on appropriate language.

A Training Session.

A TRAINING SESSION.

A FRIGGING FRAGGING FROGGING TRAINING SESSION.

Oh well, all better then.

The average age of the three of them would have been 40.

What 4 year old doesn't know that calling names is wrong. That using racist language is wrong. That picking on vulnerable people is wrong. Wrong. Wrong. Wrong.

Well, I called the nice personnel lady and let her know that I thought the idea was silly.

Sorry.

I want punishment.

Tell people not to use racist language and then fire them for doing it.

Tell people not to use sexist comments to customers and then fire them for doing it.

Tell people that disphobic, disablist, damning words about disability won't be used and then fire them for doing it.

Enough. Enough. Enough. Enough.

I told her that I thought they needed POLICY not training. She told me that they did have policy on the use of racial slurs and sexual innuendo and even, hear she breathed deeply because she was proud, had policy on homophobic language.

Rah, Rah, Rah, what about hateful language about disability? What about me having to be in a store and listen to three employees toss the term 'Retard' around with abandon. Not knowing if there was a person with an intellectual disability in ear-shot, not knowing if they'd just ruined the day of a mother of a kid with a disability, not knowing if they just encouraged other thoughtless oafs to use the word too.

Have I said, ENOUGH.

The nice lady said that I had a point.

Where do they train these people?? Oh, I forgot, they train them in training sessions.

So what's to be done about it?

"We'll review our policies ... and ..." here she paused, "have them all in for training."

Well, I've written the course text ...

DON'T CALL PEOPLE NAMES

Another letter has gone off, this time to the guy at the top of the chain.

Thank God for letters.

CTF at One

A year ago today I started writing this blog. I had learned about blogging from my friend Belinda who has had a blog for much longer. I visited her blog, Whatever He Says, and thought to myself, "I think I can do this." So I called up Blogger and set up CTF. Living deep in the country where computers connect to the web through dial-up, I know blogging was going to be a challenge of patience as much as it was a challenge to write every day.

When I begun, I decided that I'd write for a year and then at the end of the years, say "Good bye all" and hit the 'erase blog' button. I've considered this right up to this morning. I went to the page for erasing the blog even before I wrote this. But, I simply couldn't do it.

So what next? I don't know, I know I need to make some changes. But since I'm not doing what I intended to do, I need a week or two to think. So, I'll get back to you on CTF's future.

Until then, I thought I'd celebrate the year by telling you that I've found CTF readers an intersting lot. I learned that I can never tell when a post will be well recieved, oft commented on or completely ignored. Occasionally, I'll write a blog and think, I really like this one ... and it falls dead on the blog with no impact or notice. Then I'll whip one off and think, 'They'll know I took no time with this' and wham 15 to 20 comments.

Answers to questions I've been asked about the blog:

What's your favourite blog?

An early one, Poco Hor

How do you find something to write about each day?

Everyday is different, if nothing happens to write about, I'm reminded of something to write about from my past ... (which is a country littered with things to write about).

How do you deal with the negative comments?

I'm old enough to appreciate when someone says they don't like something. I find it more difficult when the negative comment is about 'me' ... when people don't know me. But then there are comments that are helpful ... Elizabeth's comment about my blogs begining 'depressingly uplifting' (or something like that) I understood. She's a writer, I value her comments and I know what she means, and in fact, next year I do want to pick at scabs a bit more. My personality is relentlessly optimistic, though, the 'there must be a pony' kind of guy.

Why did you decide to focus just on disability on this blog, will you be making it into a more general blog as you go along?

No. CTF is a disability blog first and foremost. Remember, I'd only been disabled for a year when I started, the blog was for ME TOO. I wanted to think about who I was now, how I was changed, things I do differently. I wanted to fully identify, in writing, with myself and my new community. Remember, I'm not a new writer, I've got over 30 books that are still in print. Not one of them written by the 'disabled' me. So the other voice is out there, this blog was to help me find that new voice. I find it difficult, even here in the blog I write as either 'helper Dave' or 'disabled Dave' ... one reader commented recently that she was seeing a shift from 'social work' to life with a disability in my blog. I was very happy. This is a new writing voice for me, I need to get hold of it before I write my next book.

Do you think you'll end up deciding to shut the blog down?

No. But I need a few days to think about what CTF will look like next year. I'll still write every day. I have promised myself time this week to think about where I'm going with the blog next.

There you have it, Chewing the Fat, the birthday interview.

Blow out a candle for me today!

Thanksgiving

It's very early in the morning on Thanksgiving Monday. It's still dark out, the house is very still and I've been sitting in the glow of the computer screen reading emails and checking favourite sites. I love the early mornings and I love the early bedtimes that come with them. As I've aged a new rhythm of living has emerged, I now go to bed earlier than my parents sent me as a child, I rise earlier than almost anyone I know. I'm a few hours out of sync with the world, and that's OK.

In a few hours we will be cooking up our Thanksgiving meal, we always celebrate on the Monday, and provisions are in, the menu decided on weeks ago. It's a flurry of activity in the kitchen. Joe always puts on a disc and we divide up the tasks. I sit in my kitchen wheelchair, which is a comfortable beauty, and peel, chop, dice and slice. I'm like a giant appliance. Joe does all the movement in the kitchen, getting things from place to place, from counter to pot and he operates the heavy equipment like the stove and the blender.

So, I decided last night to make this a traditional blog. I'm going to be giving thanks. As I can go on and on, I've limited myself to 10 things that I am grateful for and I present them in no particular order ...

Almost 39 years in, I'm thankful for the traditions that Joe and I have created together. We have very particular ways to celebrate the various holidays, but we also have everyday traditions about where we sit, how we share time, and little sayings that no one get's but us, like 'that would be two layers'.

I grateful that I've discovered the sensuousness of all the senses. The taste of raspberries is almost obscene. The sight of a naked tree in winter is arresting. The sound of a hot summer wind - the softness inside my mittens makes raspberries seem tame. The pleasures multiply with age, not diminish. Who knew?

Nakedness. I like nakedness. For years because I was fat, I would never even think of being naked in my own home. But now I'll walk from room to room entirely in the buff. Its freeing in an odd way - to be finally comfortable in my own skin. To catch a glimpse of myself in the hall mirror and not 'tut tut' but give myself a wink. I'm glad I lived long enough to be able to inhabit all of me.

Becoming ordinary in places that I like. Starbucks at Chapters is a place that I frequent. I like the green tea there, I love the atmosphere of the bookshop. When I first started going, the wheelchair got a lot of attention and people seemed wildly uncomfortable as I manoeuvered my way amongst the tables to the counter. Now, no one notices, I'm just another regular. Cool to be able to personally bring diversity to where it wasn't welcomed before.

On Friday I lectured in Mass and next week, I'll be in Maryland and New York, at the end of the year I'll be in the UK. I'm incredibly thankful that I've been given the honour of a podium to share my views, my ideology and my skills. I've been lecturing for years now and have been in every state but two and every province but one. Life on the road has its own hazards, the wheelchair has made it more work, but the opportunity to effect change is thrilling.

Being a blogger has brought its own pleasures. I'm grateful that someone is reading this. I write either before going to bed or first thing it the morning. In either case, the habit of sitting down to write each day has given me new focus. I'd planned to write the blog for only a year, and tomorrow the year is up, so I have decisions to make. Even so, it's been an interesting year and I've met some amazing readers, like the guy last week who commented that I must have bought a dictionary because my spelling on the blog has gotten better. And he was right, I bought a dictionary for my office about a week before.

Last night we had an incredible vegetable stew with parsley dumplings. We've been vegetarian now for a lot of years and I am grateful to have stumbled upon this way of living. The story of becoming vegetarian is long and quite personal, and Joe was a tad stunned when I came home from a trip from Vancouver and announced that I was no longer going to eat meat. "But we've just bought a bar-b-que," was his response. He joined me as a vegetarian about 6 months later and now we both read labels in the grocery store.

Sitting down. What a different view of the world comes from sitting in a wheelchair. Looking up at people who look down at you is fascinating. It is now possible to see artiface clearly, to see the falseness of sentiment in the eyes of another. How could I have been so blind before. But sitting down has also introduced me to a kind of genuineness that I didn't know that I believed existed - but it does, thankfully, it does.

Stories. I love stories. I'm never without a book and I'm always up for a story. A woman asked me recently, at the end of a day's lecture, if she could tell me a story. Then she did. She shared a story about being the mom of an adopted child with a disability. About the first time her child touched her face, reached out for her, kissed her. I was grateful in that moment for the opportunity to hear her story, to have her share it with me. I see stories in everything. I love telling stories. When I aske a question and someone says, "Well, let me tell you a story" I'm thrilled.

Gravy. That one doesn't need explanation.

Waving Back

Sitting in a hotel flipping by the channels I stop at the broadcast of some huge event. I don't realize for a few seconds that it's the opening ceremonies for the Special Olympics world games. I put the flicker down to watch. There is some complex 'dance' going on, two people with disabilities are climbing up a human mountain. The music is compelling and the two disabled folks are the only ones wearing colour, all the others are dressed in sparkling white.

As I watch I remember being asked to comment on Special Olympics for the CBC on the morning show. The topic was, put bluntly, Special Olympics, it's cute but is it sport? Toronto was hosting the Winter Games and as such, the media was picking up on it. It wasn't reported, however, in the sports pages, which led to the topic being raised on the Morning Show. I agreed only if they had a Special Olympian on with me. In order to do my job well I went to watch some of the games. I chose figure skating because that's a sport I understand.

The seats in the arena were too small, it was incredibly crowded in the venue, there was excitement in the air. I watched as people with disabilities became atheletes before my eyes. I saw the depth of the community that was there cheering, I was moved by the concentration of the skaters and the seriousness with which they took their performances.

This was during a time when the movement to ban Special Olympics was very strong and to openly support them was almost career suicide. I've never had an issue with standing for what I believed and I've never understood the hysterical response to the SO. What's wrong with having activities that are aimed specifically at a minority group? Every minority has their own events, times to come together, big deal.

I wrote and published a piece called Hot Fudge Sunday that described the debate on CBC television. The name came from the Special Olympian who appeared with me, Martin Fudge. In it I was publically and clearly stating my support for the event and for Special Olympics as a whole. Whoa, was there fallout from that! I did a huge keynote presentation in the States shortly thereafter and was called and specifically forbidden to even mention Special Olympics. I got letters, boy did I get letters.

Some spoke of taudry venues in their home communities where people with disabilities were forced to run around a track. Others spoke of the damaging effects of segregation and the need to disallow segregated activities. It struck me that both examples involved the use of force - forced participation, forced abstention. To me the issue has always really been force and power. If a person with a disability chooses to go ... um ... what business is it of yours to even have much of an opinion?

All this was running through my mind when I was watching the openning ceremonies. Then the moment came where they were carrying in the Special Olympics flag. Four atheletes with disabilites slowly processed the flag into the venue, one on each corner. The guy on the back left corner was almost vibrating with excitement. And why wouldn't he? This would be one of the big moments of his life.

They walked in like they'd practised this a time or two before. Then suddenly his hand raised and his fingers waved at the crowd. He couldn't stop himself. He had to say 'Hey'. In that moment he was who he was for the world to see. He was proud. He just had to say, "I'm here, look at me, I'm here."

As a fat, stupid child, I know what it is to be different and to seek the shadows, to search out the safety of corners, to lurk just out of sight. My world was full of cruelty, there was safety in invisibility.

It would have been wonderful to have a moment, just one moment, where it was safe to be. To raise my hand and wave my fingers, to be amongst my own.

I didn't have it.

But by God, he did.

And I saw it. Laying on my bed in a hotel far from home.

I waved back.

Home At Last

I had a fun day today. I spoke at a DDNA (Developmental Disabilities Nursing Association) conference in Marlborough, MA and had a blistering hot audience. They wanted to learn, they wanted to have fun, they wanted to think deeply. Several nurses came up to me during break and asked questions that spoke to their willingness to grow and to challenge themselves. It makes doing what I do such an honour.

On the way home I got a phone call from a friend who is someone I met years ago and has little to nothing to do with the field of disability. We became friends over a mutual love of art, theatre and books. As the years have passed we have kept in touch, rarely, but always pleasantly. He'd called because he'd discovered this blog and read the post I wrote about being 'catty'.

I could tell that there was concern in his voice and I asked him what was wrong. He wondered aloud why I would have written a piece like that and leave myself open for misinterpretation or even attack. He noted that most people were very honest and very positive in their responses but he couldn't understand why I would have made myself so openly vulnerable.

This call struck me because today, one of the nurses made a similar comment. She said that she thought I was very brave to tell stories of failure in front of an audience. That, while she enjoyed the stories, she didn't think that she could be that public with the errors she had made in her life and her career. Why did I do it and did I ever regret it, she asked.

Then hours later my friend was on the phone wondering the same thing. I told him that I started this blog almost a year ago to ask myself questions about life as it really was, disability as it was really percieved and power as it really was misused. While I like inspirational stories as much as everyone else, and while I love chronicling the everydayness of the miracle of community living, I also was to be honest about what it is to be human and what it is to be in this world, a part of this world, a member of the 'troop' called humanity.

That all sounds grand but what it means is that I think it's ok to talk about 'farting' if 'farting' has a point. I think it's ok to be honest about making remarks about others in a mall. I think that this kind of reality sparks interesting comments. I enjoyed reading all the comments to that post, even the person who thinks I'm a sad specimen. That's OK. It's discussion. It's people thinking. I was gratified to have so much chatter about something that was bigger than catty remarks, it was about prejudice and all the forms that it takes.

I told my friend about my audience today. About how daring to be 'real' about the issues and 'honest' about my failings, took the subject matter to a level that mattered. We all laughed, at me, at ourselves, at the silliness of being human.

That's why I lecture.

That's why I write this blog.

I know that there are those who won't like my point of view, I know there will be the occasional feedback sheet from my lecture today chastizing me for something I said, for how I said it, or for being a bit irreverent. That's OK, I know that's part of the gig.

As I'm over 50, I've decided that honest discussion is better than dishonest platitudes.

Thank God for getting older.

I may not be wiser, but feet have definately touched ground.

And that's exactly where I want to be.

Gerry To The Rescue

On our way to our next hotel, we stopped to pick up a few 'room groceries' at a large supermarket a few miles from the hotel. I pushed myself around and went in search of what we wanted. Found a couple of items that would make great Christmas presents so grabbed them, then we both decided we were tired and wanted to head out.

We lined up in aisle two which was just wide enough to accomodate my wheelchair. I had stopped at the till and waited for the amount to be rung in. I'd pulled out my wallet and when the amount appeared on the screen, I paid the woman and using the countertop pulled myself out of the till area.

I stopped at the end and began putting my wallet back and pulling my gloves on, I need them to help me get a good grip on the wheel and give me a solid push. One of the clerks offered to help push me out of the way of the end of the aisle. There was no one behind me and even if there was it would only take me a few minutes go get my gloves on and get going.

The clerk either didn't hear me or ignored me and reached for the handles on my chair. You don't to that to anyone and you sure don't do that to me. "I'll just be a second," I said. She kept coming. "No, thanks, please." Annoyance filled my voice.

She kept coming. Then a voice shouted out just a tad too loud, "Leave him alone."

The loudness of the voice startled everyone, including me. I looked around and saw a man bagging groceries, about thirty, with Down Syndrome, looking very seriously at me and my unwanted 'helper'.

Realizing that everyone had stopped, it's amazing to me how people with disabilities can stop time, he continued, "He doesn't want help, you should only give help when people want it."

I looked at him and said, "Thank you, that's exactly right."

"I know, boy do I know," he said.

The clerk was shamefaced and said, "Oh my God, I'm so sorry. I can't ever stop being a mother to everyone."

"Everyone," he said, mostly to himself.

Her embarassment disolved into a self depreciating chuckle. "I guess I owe you an apology, hey Gerry?"

"More than one," he said, he'd got her attention and was going to drive the point home.

Now I had my gloves on and started to push towards the parking lot. Gerry said, "Want a push?"

I wanted a couple minutes with him so I said, "Sure."

On my way to the car I thanked him for pushing me but I also thanked him for standing up for me.

"I've been waiting a long time to say that," he said.

"I'll bet," I said.

We shook hands and he went back to work. Smiling.

Sweeeeeeeeetieeeeeee!

In the year I have been writing this blog Joe has never suggested a blog post, until today. We were driving to Massachusettes where I'm going to be presenting the next couple of days and Joe said, on a particularly long and boring stretch of freeway, "Aren't you going to write a post on what happened at the airport?"

I was taken aback, "What?"

"You know, the woman at the airport."

"What woman at the airport?" I had no idea what he was talking about.

Then he raised his voice and said, "Sweeeeeeetieeeeeee!"

I immediately knew what he was talking about. We were returning a rental car and I waited by the elevator while Joe went to pay the parking fee for our car. An airport employee saw me sitting alone as she passed by me. We smiled at each other. On her way back I was still waiting but now I could see Joe coming down the walkway. She approached me and said, in a tone reserved for children ...

"Sweeeeeetieeee, are you lost. Do you need me to get someone to help you?"

By the look on my face she knew that I didn't need help and then she saw Joe and said, "Oh, good you're here." Then she left.

That was it. That's the incident that Joe wondered if I was going to write about. But, in fact, until he reminded me about it, I'd forgotten it. Now, this is weird because when I first became disabled, patronizing remarks sent me around the bend. I know I've blogged about this kind of thing before. But now, nothing. I didn't even spend much time thinking about it. It annoyed me, it was over.

Part of it was my mood that day, I'm sure. I was in the kind of zone that she'd have had to slap me to get me really riled. But also because, I hate to say this, I'm getting used to that kind of interaction. It doesn't happen daily, or even weekly, but it happens enough to become ordinary. I just don't have the will the be angry all the time. Maybe, too, I no longer find the intent malicious but the result of silly ideas about disability. Maybe, three, I no longer find it my duty to educate each and every person who acts like that.

Does this mean I'm losing my bite? My verve?

I don't think so.

I just took on a huge hotel chain and emerged, if not entirely victorious, respected. I bore down into that fight because I didn't want what happened to me to happen to another with a disability. So, the fights still in me.

I guess.

Perhaps all of us start picking our battles. I remember one mom with a boy with cerebral palsy saying much the same to me. She had to let slide things after awhile or she'd end up giving up because the battle was on all sides. She, too, decided to figure out what was important and go to work.

I'm worried though, because once I thought that everyday put downs was a battle worth fighting. Each and every time. Now I didn't even remember a particularly egregious example.

Maybe it depends on the day. My mood. And how much fight I've got left in me in that moment.


Don't know.

A Mall and The Night Visitors

I've been wary of writing this blog, but I've decided to go ahead.

See what you all think.

Sometimes I'm catty, immature, silly and even mean.

And sometimes I enjoy being all of those things.

It's like being a teen girl on testosterone.

Anyways, Joe and I were going through the mall and I spotted a woman who was wearing clothes two sizes too small and twenty years too young. Her hair was two-toned and her jewellery garish like she bought it from the 'so you want to look like a whore' hour on the shopping network. She practically begged for comment, so I did. Just to Joe, of course, being heard by none other. We giggled as we then began editorializing on other people's manner, dress, hygiene. It was just plain fun.

To spend a few minutes being impolite was a bit freeing. Spending a lifetime trying to be understanding and kind is great but it's also wearing. I can't believe, I'm telling you this. But somehow I don't think I'm alone. I think it's probably hard wired into the psyche to comment on someone wearing turquoise who should be wearing black. I mean don't people have mirrors. It's make up not paint. As a fat guy, I upholster myself carefully. I don't want muffin tops over my pants and I don't want any part of me exposed without intent. Geez, get a grip, thongs look wrong on almost everyone.

Then I saw the ultimate guy. Flannel red pajama bottoms, beer gut hanging over, tank top way too tight. I made an unkind comment. Joe went, "Shhhhh...."

"No one can hear me," I said.

"He's got a disability," Joe said.

And I immediately stopped.

That interchange has bothered me ever since. I mean I wasn't joking about his disability, I was joking about his clothes. I wasn't more unkind with him than I'd been with "Flip Flop Mama" or the "King of Comb Over". But still I stopped.

Like his disability somehow exempted him from the kind of casual scrutiny of a stranger. Like he had to be treated as more fragile, more special than everyone else. Held to a different standard. And a lower one indeed.

It's weird but I feel now that my prejudice was shown more by stopping than it would have been if I had continued and treated him to my unkind wit like I'd treated everyone else.

Two questions for you. First, do you ever have catty outbursts like we did at the mall? Be honest. Second, would you have stopped too, if you discovered someone had a disability? Now one big one, is stopping the right thing to do?

Another Way to Look at the Day

It probably only took seconds for him to realize he'd been left behind.

The staff, too, realized only seconds after the subway door closed - one is missing. I imagine that we will never know what that young man felt as the sensation of aloneness crept over him. As a man with an intellectual disability who requires a lot of care, he's seldom, if ever, really alone.

The staff, terrified for the safety of the one left behind, gets off at the next stop.

Travels back.

He's gone.

No longer there.

Acting quickly the staff alerts security, alerts his agency, and moves to take care of the others travelling with him. Much happens quickly. The subway is soon shut down and a search is begun. It took maybe twenty minutes, a half an hour, for the search to begin in earnest.

Unaware of the fuss being caused. He thinks. He has to rely on himself. There is no one to tell him what to do or where to go. He reasons, and in doing so discovers that he can reason, he is here in the subway to take a train.

A train comes.

He takes the train.

He sits looking out the window, every few minutes the train pulls into a new stop. He looks and sees no one he recognizes. But not to worry, there will be another stop outside the window soon. So he waits. He sits alone. And waits.

Stops fly by. He is now only a traveller. He does not know that there is a storm of concern rising. Everyone now knows he is missing. There is worry that he left the station. But why would they think that. He reasoned. His reasoner worked. It will, in a couple of hours, surprise them as much as it had surprised himself.

The train now comes to a stop. A man he doesn't know identifies himself. He doesn't know this man, but he knows he has a uniform. He knows he's been found.

And he was grateful.

But oh, what a wonder it was, to be lost.

Just for a little time.

Being Staff

Sometimes I just read things wrong. When searching the web for information on the disabled guy who ended up as an Egyptian priest, I read one account that described the painting of him as being with a staff, and the oddest picture popped into my head.

In my minds eye, I saw an Egyptian priest on market day considering a purchase while a young staff says, "Now, Rom, do you REALLY think you need that papyrus?" I saw the staff's little nose curl up in disapproval as she insisted that he, "put it back, right now." Then I imagined the little staff making notes in a binder about how Rom needed prompting to deal with his inappropriate shopping behaviours at the market. "Bless Ra! I was here for him."

Even though I know that they were talking about a staff - a stick - a crutch like thing, I can't get the image of that little staff out of my mind. It makes me giggle.

So, I looked up the word 'staff' in the dictionary because it struck me odd, that this guy was helped along by this staff, and that we as staff are hired to help people along. Hmmm, could this be coincidence?

According to the Oxford Canadian Dictionary ... Second Edition, the word 'staff' has a variety of meanings but there are two conflicting ones. The first ...

those in authority

Gosh, that's scary. Even the dictionary gets that we have power and control issues with people in care! Our status as staff gives us an automatic step up the heirarchy of power in relationship to those in care. This may be one of the reasons why there is so much abuse of people with disabilities. The authority went the wrong way.

But there is another definition, one that really struck me. Took my breath away;

a person or thing that supports or sustains

That to me is wildly appropriate. For that Egyptian priest, his staff went where he went directed by him, it did what he needed as determined by him, he used it when he needed it and put it aside when he didn't. His staff wouldn't have done anything but support or sustain. It was blessedly silent so he wouldn't have to listen to its opinion. It was blessedly compliant so it managed to take direction without checking current policies and protocol. It was blessedly willing so he didn't have to beg to please, please, please, get me to the temple on time.

I'm beginning to see that stick, that ancient piece of wood as a role model.

What a great answer to the question, what do you do for a living?

I support and sustain.

That'll do it for me.

Siptah

I love discount bins. I love rummaging. Thus yesterday I was in heaven as the grocery store had two bins, side by each. One filled with remaindered books, the other with cheap DVD's. I'd finished with the DVD's and had a couple nestled between my back and the back of the wheelchair. Then I was on to the books. Almost immediately I found a book that purported to have 505 facts about germs. It was on sale for only $3.99. That's less than a cent a fact! Joe found me sitting happily waiting for him to return from the bathroom with 3 DVD's and 1 book. I showed him my prizes. When he got to the book he said, "Germs?"

Sometimes Joe just doesn't get it.

On the drive home I sat quietly flipping through the book discovering things you need to know like there is 10 million, million, million different bacteria in human poop. There's things in there about pus that are a revelation. I'm reading these things out loud to Joe who is oddly quiet. Then I come upon a fact. I've turned that fact into a quiz. Here, try it out ...

The earliest depiction of a person with a disability at work was in ...

A) 108 AD

B) 1580 BC

C) 1248 AD

D) 1824 AD

Do Do Do

Do Do Do Do

Do Do Do

Do Do

Do Do Do Do

(The theme song from Jeopardy if you don't recognize my singing.)

If you guessed 1580 BC, you'd be right. There is a painting of an Egyptian priest ... you read right ... priest ... with polio. I looked him up on the computer by Googling three words, egyptian priest polio, I click on the search button and suddenly I'm faced with a huge number of hits. All about this guy named Rom who is depicted with 'withered leg and staff'. One of the hits goes further and tells of this Eqyptian Pharaoh with a disability. When the mummy of Siptah, a Pharaoh who died around 1193 BC, was discovered, scientists found that he had a seriously twisted leg and foot and they attributed the disability also to polio but with less certainty than with Rom. What was certain about the whole thing was that these two guys, without question, had disabilities, and also without question held powerful positions in Egyptian society.

I have one question.

What happened?

How could we, as human beings, at one time accept disability to the extent that it didn't prohibit people from being in powerful jobs, and now in the age of 'tolerance' have people with disabilities unemployed at a remarkable level? Why is it that people with disabilities have trouble even getting an interview? I feel incredibly lucky to have become disabled after I had spent a career building a reputation and a place for myself. There have been few barriers for me, but only because I was already employed, already 'in'.

Those early Egyptians had it going on. All I've ever really read about history before was that disabled people were discarded, disposed, disposessed. And now I find two guys who must have been pretty cool. I feel like sneaking into schools and finding kids with disabilities and saying, "Hey you heard the one about the Egyptian Pharaoh with withered limb?"

Well, I'd say that little fact was worth a tad more than a cent.

See?

Now did you know that if you lived long enough with smallpox the whites of your eyes will turn completely black ...

C210

A few weeks ago I got an email from a guy named Jef Warnar who teaches a course called "Sexuality and Social Relations" at Georgian College in Orillia. He is using my book, 'Just Say Know', in his class along with the video 'The Ethics of Touch' and wondered if I had any words of wisdom for his class that he could pass along to them. In with that request came an invitation to drop into his class should I ever be passing the college during the semester. I read the email and hatched a plan.

We were going to Ottawa to do a presentation there and we could easily go through Orillia and then take the long route to enjoy the colours. So we got up early on Wednesday morning, piled into the car and headed to the college. I didn't tell Jef we were coming, he'd said, 'Drop in' and that was my intention. We found parking and a couple of very polite students gave us directions to room C210, the room the class was held in.

I knocked on the door and waited. The door opened and Jef's face as a mixture of pleasure and disbelief. He shook my hand and then turned to the class and said, "We have a surprise guest today." I rolled in, grinning. There were at least twenty students there and all had that eager look that you see on those who have a goal. I turned my chair to face them and told them that I was on my way somewhere else so I didn't have a lot of time. I gave them three questions.

The last question was from a young woman on my left. She wanted to know what advice I'd give them as they were preparing to enter the field of disability. I told her that I wasn't really good on advice like that but I'd give it a shot.

"You are entering the field of human services," I said stating the obvious, "remember then that your best resource will always be yourself. Your own humanity. Don't be fooled by someone's difference. When you don't understand why someone is doing what they are doing, when you just can't figure them out, retreat to yourself. I once worked with someone who engaged in severe self injury. I couldn't understand why anyone would hurt themselves. There were no clear antecedents to the behaviour, no clear benefits to it either. Then I retreated to self and wondered, 'when do I engage in self injury' ... surely I do, I bite my nails, I chew the inside of my cheeks, I drink too much, smoke too much, sleep to little. Suddenly, I knew that I responded to anxiety, depression, fear, by hurting myself. In that moment the individual I was thinking about became less bizarre, more ordinary, more like me. More than that, I had a place to start ... an understanding to grow."

"If you use your time right, you will discover, too that you are on a parallel journey with those in your care. You will be asked to think about things that most people avoid. You will be asked to challenge yourself in ways that people find painful. You will be asked to review your ideas and your beliefs and your motives regularly. You will have the opportunity for personal growth that is rarely offered to us these days. The best thing, for me about being in human services is that at the end of every year, I am different and I am changed. Contact with others creates the opportunity for contact with self. Be open to that growth."

I was looking at her, my inquisitor, when I was answering, but I was talking more to myself. The question got me thinking about my life here in human services. I was so much older than the students, I had trod the path that they were embarking on. It felt like a real honour to have the chance to talk to them, there in room 210.

On the way to Ottawa I was fairly quiet for a long while. I was answering that question a thousand different ways. Wishing I'd said things differently, wishing I'd focused on differing issues, rewriting what I said. But life is life, what you say you say, so I tired of the self examination decided that I'd enjoyed my journey thus far here, working with others, now it was time to enjoy my journey to Ottawa.

"That tree is beautiful," I said as we passed an incredible maple.

Joe smiled and welcomed me back to the trip.

Two Word Philosophies

We stopped at a funky little restaurant on our way to Ottawa. It was nestled in amongst other shops in Peterborough and looked welcoming. It was. We'd decided to drive the northern route to see the fall colours and to be off the freeway. The drive had been great. We'd expected few of the vibrant reds this year but we saw amazing beauty. Trees that had spontaneously burst into flame. How cool is that.

As we had lunch, Joe and Mike had the messy grilled cheese and I had falafels smothered in garlic dill sauce. I wouldn't ordinarily tell you about the food, but it was good, I'm fat, therefore food matters to me. I had mentioned hearing someone talk recently about 'two word philosophies' ... it's a challenge to put the things you believe into two words. We had fun coming up with combinations.

"Cool matters," was the first that Mike came up with.

"Age gently," was Joe's.

"Fat's phat," was mine.

Then we were off and running. It turned into a fun conversation and we went round and round and round again. Once in the car and the Dixie Chicks were playing in the car, I thought more about this whole idea. Here are some that came to mind when thinking about what I do and who I am.

Listen softly.

Judge rarely.

Hope constantly.

Strive unceasingly.

Apologize readily.

Feel passionately.

Guard prejudices.

Temper temper.

Swallow fear.

Expect miracles.

Be miraculous.

Reject pretence.

Welcome truth.

Challenge orthodoxy.

Hold dear.

Two words can contain a lot of wisdom, we discovered as we chowed down. Two words can reveal a lot about one's character and one's vision. As a writer, I find words flow fairly easily for me and it was good to slow down and try to use fewer words with more meaning. I'd like to hear your two word philosophies so ...

Comment freely.

Joe Jobs

I'm just a little afraid.

Right now I'm in a hotel in Ottawa all by myself. Joe is in the next room over but there is no adjoining door so it's just me here. Since I became disabled I have not ever been entirely on my own, not really at all. As such I've become, I realize as I sit here, a bit dependant on Joe's physical presence. Not that he does every little thing for me, or that I can't do things on my own, but just having him around makes me feel like ... if something happens, like I fall which I am prone to do, there's someone to call out to.

You know.

"I've fallen and I can't get up."

And though the bathroom is supposed to be accessible, the toilet is one that is grade school height and the bar is way above it. There is no side bar. We've agreed, no using the toilet unless I call him back over, the bathroom is a Dave-tragedy waiting to happen. But the bed is very small and the room was deemed to tiny for a roll-away cot, a Z-bed. So the conference people offered Joe his own room, I suggested that he take it. He's a bit to old for cots anyway.

All this time, two years, and Joe's presence kept me from realizing how much of my life, my independance and my sense of personal security my disability has taken. All this time I thought, so what, no big deal, I can manage just fine, thank you. And I was wrong. "We" can manage just fine but maybe, truthfully, "I" cannot.

This would be a depressing realization. But in fact, it's not. Over the years we've relied on one another in greater and lesser amounts. There are many things that Joe completely relies on me for ... they are that 'that's you're job' kind of things. This is a little different because I do what Joe does not want to do, not what he can't do. Here, it's abit more of the 'can't' situation.

But what's got me thinking here about how Joe has managed for two years to let his assistance really slip under the radar. His manner hasn't made me feel burdonsome, or like I should be constantly in his debt. He has provided support to me that has allowed me to continue on my path, to strive after my goals, to be the master of my own destiny. He has never for a moment, now that he has the power of assisting, misused that power. He has shown me that power need not always corrupt.

I will make it through the night, of course, if I fall I just have to crawl to the wall and bang on it. Or as Joe put it before he left a few minutes ago, "Knock three times on the wall if you want me, twice on the pipes if the answer is Joe, Now!"

Ha Ha

While I do not see Joe as my 'staff' or my 'carer', I do see in him the elements of what it takes to give support without taking leadership.

It's something I'm going to think more of, take more notice of, even talk to him about. There's a staff training in this, maybe even for me.

Ruby's Walking

She stood teetering on two feet. She's been standing on her own now for some time. A couple of steps have been taken. But there standing by the fridge she looked like a ballet dancer as she raised her arms over her head. Her chest leaned forward. Her expression changed from concentration to determination.

Then.

She walked.

Her arms up, her chest out, she flung herself into a new world.

She's just over a year old and now the floor she crawled on only minutes ago is being explored anew. She looked to us for approval and then she was off. Around the banister and down the hallway, back to the front room, around and into the kitchen. One minute she couldn't walk. The next minute she was running.

Ruby's world has changed.

With her 'forth into the world' posture - arms up, chest out ... it was hard not to contemplate what kind of world she was thrusting herself forward into.

She already has decided that I am cool but my wheelchair is cooler. She likes it when her Dad runs her around the lawn while she sits in my place in my chair. She likes it as a jungle gym. And she's met Mickey, Mike's friend with an intellectual disability. Last time he was up to visit Mike, he held her and she looked at him and decided that he was OK. She comes from a mix of ethnicities so her birthday party is a little UN.

She is only a year and has experienced more integration than my parents have in their life. She is only a year so she hasn't yet learned that some amongst her acquaintences have less value, so she values all of us equally. She is more concerned about kind, than smart. She is more concerned with generous, than mobile. She is more concerned with the content of the characters in those she meets.

Ruby's walking today.

We went out to dinner to celebrate and she took over the pizza joint. She'd run back to her dad and be swung into the air. She'd tire and grab onto my tire to rest a bit. At one point she was so excited she just put her head back and laughed.

On our way out Mike pushed me and she walked beside me.

She's walking beside someone who's rolling.

I don't know why but I think that's cool.

First We Take Manhatten ...

Yesterday at the mall dropping off Joe's perscription for glasses we stopped at Teopia for a cup of tea to kill time until the glasses were ready. We noticed a friend walking by and invited her over to chat for a bit. In the end we had a chin wag of epic proportions. Gossip? Yeah. After we left we were heading back and we ran into a young woman who stopped me and told me that she was a student studying at the college, further that they were using my book, "Just Say Know" in their class along with the video "The Ethics of Touch". She recognized me from the video. She told me, blushing, that I was a role model for her. I blushed in return and we said our goodbyes.

Nice.

I then started thinking about role models that I had while young ... there were a few ...

The high school janitor had to be one for me. He seemed to gather about him the discarded kids. The ones that had no potential, no ranking, no respect. This guy seemed to be able to relate very differently to us all than anyone else ever did, or cared to. The cool thing about him is that he wasn't at all social worky or filled with folky wisdom, in fact he did everything he could to establish himself as an alpha male kind of guy. What he had was time. And humour. And a capacity for looking at us clearly. He liked to stand out side the building and have smoke and invariably there'd be one of the school's losers standing with him. Often that would be me. I have a variety of janitor memories. Oddly, still, they are quite private.

When I was a boy, I saw the movie "The Miracle Worker" with Patty Duke and Anne Bancroft. Instantly I was taken by Annie Sullivan and remember thinking that it was incredible to have that kind of impact on someone else's life. To seek out another, to make the world available to someone, to capture but not cage another soul. It moved me greatly and deeply. It was that movie that had me thinking about working, somehow, with those with disabilities. To this day, the movie remains one of my favourites.

Ruth was an older woman who ran a shop around the corner who loved to smoke and drink scotch. She was full of tales from a live well lived, she wore her 'outsider' status as a badge. It was amazing to come under the sphere of her influence. She was fascinated by my work with people with disabilities and liked to hear me talk of my work. It was Ruth who first prodded me to speak up, to not be shy about my opinions. It's hard to believe now that I lecture around the world, that there was a time when my fear of public speaking, of being in front of others, was debilitating. I remember telling her that I was going to a conference for a day on sexuality and disability. She said, "Remember, speak up." And then at the conference someone said something so disrespectful to the sexuality of women with disabilities that I was shocked. Ruth's voice was in my head and my hand went up. I said a sentence, a whole sentence, in front of others. I got applause. That was the first time I'd ever spoken in public. It wasn't the last.

I still have role models, I still have heros, I still admire others. While I felt a bit uncomfortable with being praised thusly, like the janitor would have been, it was nice of her to stop and tell me. It sent my down memory lane ... and I'm still there.

Unbowed

Today is a very big day for me. September 24th is the anniversary of the day I liberated myself from the tyranny of expectations. Let me explain. I was a young behaviour therapist, hired to consult to families, schools and agencies. I served an area, not an age group. As such in the course of a week I'd be found talking to parents about toddlers and to group homes about the elderly. I liked the diversity and I liked the challenge.

At first I didn't think much about what I did and why I did it. They had behaviours that needed controlling, I was the man for the job. I wrote token economies, I wrote differential reinforcement programmes, I wrote strategies for establishing what we called 'instructional control'. And I liked it. I liked the briefcase. I liked the status. I liked having an office. I liked coming and going as I pleased.

Then came Nate. A lovely little boy with Down Syndrome. A boy that would bring about a revolution in me and a resolution that I have since not broken. He was a joint referral from both the school and home. Seems dear old Nate had a problem with compliance. He had defiant behaviours. He was oppositional. All this and in grade 2. He was on the path to notice. Sitting in my first meeting with parent and teacher I heard story after story about this kid who refused to participate in circle (outrageous) who refused to wash his hands before dinner (unthinkable) and other childhood misdemeanours.

I took notes, organized myself. I put together a fairly simple baseline. But it didn't work. Nate had had a good week at school and a good week at home. Next week was the same. Nothing showed. They swore to me that this was an aberration. That this oppositional kid was 'manipulating' us all. The third week in there were two incidents at school and one at home. They sat there with data sheets in hand, both mom and teacher, with a 'see, see, see what Nate gets up to' look on their faces. Both school and home thought that I had enough data now to put together a 'Compliance Training' programme, oddly, so did I.

Nodding agreement while I scanned the data, I asked them to do a different form of data over the week or two it would take me to write the programme. This data sheet would have them tick off the commands he followed in his day and 'x' off the commands that he refused. They both agreed and we all felt very, very, scientific.

I read the data sheets more carefully upon return to the office. Nate's outbursts, in the cold light of calm, seemed fairly typical for a kid. I got out the calculator. Three acts of non-compliance in three weeks. That works out to ... wait ... 3 incidents divided by 3 weeks ... 1 per week. Where was this kid who did all the things I was told. Then I realized that if that meeting they gave me examples that had happened over time. I didn't ask for the frequency or regularity of the 'outbursts of defiance' I only wanted examples of them. Dumb. I called a co worker with children into my office and asked if she and some of her mommy friends could take the same data for the same week.

Intellectually interesting, but nonetheless I had a programme to write. Compliance Training. When we all next met, I had the programme in hand but I asked to see the new data sheets first. Mom and teacher handed them over, with quick calculations I found that Nate complied to just over 90 percent of requests and demands. He hesitated on about 4 percent. He refused about 5 percent of the time. I looked up at them and said, "This is wrong." I put my programme away and said that Nate was, if anything, over compliant. They were upset. I didn't care.

Back at work I took the data sheets from the mommies. I of course had no data from schools but I found that typical kids non complied and hesitated at a much, much, higher level. Some kids up to 40 percent of commands and requests were refused or hesitated in follow through. None of these kids was labled a behaviour problem, an oppositional child. None of them was on a programme. In fact some of the parents were outright a little proud of their child's independent streak. Remarks like 'no one pushes her around' and 'he knows how to stick up for himself' were written by parents in the margins.

But here's this kid who lives in the margins and he's got his behaviour under a microscope. I went to one more meeting with the school and with the mother. I told them that Nate's behaviour was better than the norm, that in fact I felt he was over-compliant, that he needed to learn how to stick up to both of them a little bit more. I felt that he was being groomed as a victim and that I would have no part in that grooming. I told them then, what I believe now. Non-compliance is a skill, not a behaviour. Aggression is a skill, not a behaviour. That if they wanted Nate to grow up well, they had to teach him how to be defiant, to be a problem when he needed to be a problem. That was a programme I would write. I was ejected from the school.

My boss got a call.

I was in trouble. I tried to explain my reasoning. She didn't care. I tried to say that someone had to confront the teacher and the family. She didn't agree. I tried to say that at times it was more important to be an advocate not a programmer. She didn't think that was our job. The end result was that the case was taken from me and given to another therapist. I took my programme out of the file before passing it on. I destroyed it. If this kid was brought to his knees it wouldn't be because of me.

Now I was asked to write a letter of apology to the school with a copy to the family. "Fire me," I said, "I won't do it."

The therapist who got the case met the family, met the school and met Nate. And turned down the request to do a programme. One could sense that a moment had come that had changed us all.

After much furor a decision was made.

We would never, as an agency, write a compliance programme again.

We'd work on cooperation.

Negotiation even.

But not compliance.

It was on September 24th that I decided that there was a line I would not cross. And didn't. It was then that I realized I would always have to look at my feet before making a move, to see if that line appeared again. It has, often. And it is on the anniversary of that date that every year, I remember Nate, remember the fight, remember the decision. I ask myself again, am I being careful? Really careful with the trust given to me. And every year I discover ...

There is a line I will not cross.

Nate would be an adult now.

I hope he's unbowed.

Orgy

Joe needed needs new glasses and we went to the mall today because we had a gift certificate for Lenscrafters there. We couldn't remember where it was in the mall, but we were both convinced it was in the mall's lower level. We entered, found a directory and discovered that the store was at the other end in the upper level. But it was Saturday, we weren't in a hurry, why not visit the mall. I actually feel bad about calling it a mall because the radio commercial keeps telling me that it's a 'shopping resort'. Cool.

I spotted a store called 'Teaopia' that sold ... umm ... tea. So we stopped there first and a really charming clerk spent a fair bit of time with us pulling out these huge cannisters of teas from around the world and letting us experience the fragrence and soon we had a line up of three bags of expensive tea. The clerk was great, it was like he didn't notice or didn't care that I was in the chair. He realized right off that I was the tea junkie and therefore didn't have that annoying habit that some clerks have of speaking to me through Joe. Nice.

So we went along the shores of the resort, popping into this store or that, finding a cute little winter coat for baby Ruby at H and M, and finally picking out the glasses at Lenscrafters. The clerk there was one of those automatons. There was a pair of glasses that I thought looked great on Joe but he had some concerns about the lugs. I put them on so he could see that the lugs were invisible when on. The clerk approached. Saw me in the glasses. "They bring out your eyes," she said, seriously, she said that. Joe said, "Umm, I'm buying the glasses," she waited until he put on the glasses, "They bring out your eyes," she said, again. Joe has blue eyes, I have green. Uh, huh, but despite her we bought the glasses. Done.

Then we decided to have a bite at the food court. I was wheeling around looking for the exact thing I wanted to eat. The food court has a long wooden railing around the seating area. I like these because I pull myself with one hand using the railing and wheel with the other hand. I go much faster, it feels freeing. When I get to the end, I know exactly how to release from the railing and make a sharp turn. A woman watching me said, "You are sure good in that thing. I'm impressed." Now, I know that she's being kindly. But, really. She's impressed because I can wheel myself and make a turn? It takes that little of an accomplishment to make me an inspiration? Really. Is the bar set so low that merely getting about is worthy of comment? Really.

A while back Elizabeth McClung, a fellow OUCH blogger, who I admire because she wrote an incredible novel, Zed, that I'm now reading. This to me is a REAL accomplishment. A little bigger than turning a corner in a wheelchair. Anyways, Elizabeth, wrote an OUCH blog full of complaints about having a disability. I love how she challenges orthodoxy even on OUCH. So, she asked others what aspects of disability are worthing of a good moan. I wrote in my commets to her blog that I found that being in a wheelchair means that the oddest people feel that they have a right to break into my world with commentary. I thought of Elizabeth in the 'shopping resort' looking at this woman with the beautific smile. She'd complimented a cripple, surely there's a special part of heaven for her and her ilk. But, I was in a good mood. I had expensive tea in my wheelchair bag, I was about to lunch with Joe, my day wasn't going to turn on this incident. So I smiled back, and refrained from congratulating her on the fact that she seemed to balance really well in her chair, as good as I did in mine. Enough.

So today, Sunday, we're going out again. I think I'll thrill the world by pulling myself up the ramp at the theatre. What an orgy of awe that should bring.

Living Integrity

A force of nature.

Such is the only way to describe Lynne Seagle. An audience was on their feet, cheering, the moment she finished her presentation in Toronto. Lynne spoke as part of a series of speakers that had been brought in to encourage and challenge us to look at ourselves, our services and our relationships with those in care. Believing that an agency is as good as its worst staff, Lynne talked about how to create healthy agencies with happy staff providing holistic care.

I don't think that audience was expecting what it got. Lynne isn't a speaker with charts and graphs, she's a speaker with passion and conviction. She isn't a speaker who talks about what she did ten years ago, she talks about what she does now. Lynne cares about people with disabilities and she shows that as an administrator that cares about her staff.

Though much affected me as I listened to her present, laughed at her stories and marvelled at the quickness of her wit. I was really taken when she challenged us to imagine what an agencies service would look like if every staff understood that they were in charge of their own integrity. I know that we all are, of course, but I for a second imagined it. It was awsome.

At Vita we are thinking of trying a new idea. We want to see what a 'Pledge of Service' would look like. So I sent out an email to all staff asking them to ponder a bit and send me a description of the qualities of a good staff, to tell me about the best they've seen, the best they've been.

The emails have been stunning. Almost all coming from direct care, they varied in form from a list of a few words to long letters. Some of them moved me in their simplicity, all of them moved me in the depth of caring that had been poured into those words.

When I got home from dropping Lynne off, I sat down at the computer and re-read those letters. I shouldn't have. They got me excited. They got me thinking. This isn't the best frame of mind to go to bed with. So, at one o'clock, I got up and spent a few hours now putting together the first proposed draft of a 'pledge of care' and before getting shy with it, I put it into an email and pushed 'send'.

Even if we don't go this route, it's been a good exercise for me. To try and put into words what my personal pledge is to people with disability, to understand what living in integrety in service meant.

A day with Lynne Seagle is like taking a brush to your soul and scraping off the barnacles.

Lynne, I can't thank you enough.

Godspeed.