BOO!!

I don't do costumes. I don't dress up. It's hard enough to find regular clothes that fit, forget trying to wedge this body into a superman costume. The only costume that comes easily to mind for chubbies and chubbettes is a toga, but fat guys in toga look like fat guys in a sheet. We look more like Billy Bob, a hoodless member of the KKK, than we look like anyone on their way to the forum. So, I don't do costumes. I buy a box of 200 mini chocolate bars for the 4 kids that come by the house. What to do with the rest of the candy, oh, what to do?

But the real reason I don't wear costumes is that I think, these days, that masks are redundant. I wear masks every day, for heaven's sake. I've got my 'I'm listening ... I'm truly truly listening' mask, that one is really popular. Then there's my 'I'm sensitive to your needs ... let me feel your pain with you' mask that I use for special occasions. Then there's my 'No, no, I'm ok, you didn't hurt my feelings' mask that I use way to often. One of the most common masks I wear is the 'I'm a grown up' mask - it covers the childlike fear that is often seen only at the back of my eyes.

So I don't wear costumes. Or masks. These days I'd like us to have a national holiday that's the 'Hallow-you' day. The day where we all take our masks off and are authenically ourselves for a whole day.

One guy I used to work with all the time constantly asked the staff, "ARE YOU HAPPY ARE YOU HAPPY ARE YOU HAPPY ARE YOU HAPPY ARE YOU HAPPY" consistently through the day. I advised, wearing my 'I'm advising you because I know stuff' mask, that people with intellectual disabilities have difficulty reading emotional states in others. I suggested that he was asking all the time because he didn't have the skill of 'face reading' so was asking instead.

So, I sat down to do a session on feelings recognition with him, I'd put my 'I'm a patient teacher' mask on so I was ready. Using the four feeling faces from the Ludwig curriculum I discovered that he could read each of the faces - no problemo - no error. I 'put on' each one of the feeling faces by making my face resemble the pictures to see if he could read the faces on flesh not paper. 100 percent accurate. I was confused, he clearly didn't need the class and he clearly didn't lack the skill.

"Why are you always asking people if they're happy, when you can tell what their faces are saying."

His answer was swift.

"Staff faces lie."

"What?" I asked.

"Staff faces lie, you never know what they are thinking behind their faces."

Hmmmm. Who's disabled in this picture.

So, today my costume is going to be ....... WAIT FOR IT .....

ME!!

Don't run screaming from the room. The real me is ... well, you'll see ...

BOO!

Laura Hingsburger

Anyone driving by might look at the house with pity. It was a shack that stood defying gravity and prairie winds. In winter, frosted windows let light spill on the driveway. Not even the deepest cold of an Alberta winter could permeate those walls. Grandma's house. It smelled of cooking, and always, for me, freshly made donuts. Grandma's donuts were constructed of different ingredients than those you get at Tim's. They were donuts with heft.

Grandma loved me. And I loved her right back. I was the ungainly kid. The unathletic kid. The kid least likely to succeed. But Grandma loved me anyways. She and I could spend hours together and each and every one of those moments I felt entirely safe. She had a manner about her - no one crossed her - yet no one feared her either. When I was with her, Grandma's force protected me.

I have a recurring dream of Grandma's house. The dream only visits on nights when I'm sleeping well and deeply. I wander the house, room after ramshakle room. I smell Grandma, her scent was one of soap. Of clean flesh. She and Grandpa didn't have money, didn't have things, but she was never bowed by what life gave her.

Grandma taught me that class had nothing to do with status, or money, or fame. It had to do with bearing, and grace, and purpose. And Grandma had class. She created a safe haven for me. My happiest memories live, today still, in Grandma's house. She gave me then, a gift. An understanding of what safe haven meant. That it is possible to create, for the least loved and the least likely, a place of comfort, rest and assuredness. Nothing could hurt me at Grandma's house.

This, to me, is my quest in the work that I do. I want human service to understand that our first, best goal should be safety. Safe Haven. Sanctuary. When Joe and I were students at the University of Victoria, we - like the stupid kids we were - would go down to the breakwater for a walk on stormy nights. The breakwater was like a long narrow sidewalk that was built out into the ocean. The drop to the water seemed steep. We'd walk as the wind tried to whip us off the top and into the water. It never did, or came close, but the thrill was there.

I told Joe about Grandma's house on one of those walks on the breakwater. I noted how the wind had the waves slamming against the one side of the breakwater and there was calm water on the other. The breakwater was like Grandma's arms protecting and securing what was precious. I had been lucky to have been on the lea side of Grandma's love.

It's important that we all have places where we are safe. Breakwaters and Grandma's houses. Fresh donuts and quiet conversation. This is where we begin in service. First we make safe - then we make lives.

Grandma may have lived in a house that looked like it was clabbored together by a little piggie out of sticks, but there were things that Grandma understood.

I was one of them.

Pray Tell

I admit it. To me it's no big deal. Every time I give a lecture, I always say a prayer before I begin. I take what I do seriously and even though I use humour as part of the lecture, there is a real seriousness to the task. Prayer helps center me and reminds me that I am a very small part of a much bigger whole. And, too, I pray because I believe. In prayer. In God. So there.

A couple of months ago a woman came at break and told me that she had noticed me bow my head before the presentation started. Then she asked if I was 'centering' or 'praying'. I didn't think it was any of her business but I am not ashamed of my need for prayer so I answered that I took that time to pray and through that I became centered.

Whew, boy did she take that whole thing wrong. I got a wee bit of a lecture about how faith had screwed up pretty much every aspect of life in the world as she knew it. She recited much of what I knew regarding faith and disability and how the Christian church in particular had much to answer for regarding the view of disability as sin.

For someone who was clearly opposed to preaching, she sure was good at it. I listened as politely as I could and then told her that I respected her point of view, I even agreed with much of it, but that was as far as it went. I believe in the power of prayer and I also believe in her right to disagree. But that wasn't good enough, her tirade was becoming akin to harrassment.

What happened to respecting difference and respecting differing opinions. I would think that we, who work with a diverse population, would be better at diversity. At daring to allow others to be who they are and think what they wish. We, who work with the vulnerable, need to be on guard so that we don't impose our will or our wishes on others. I know it's wishful thinking but I think the people who work in care providing should be the most tolerant, gentle, open minded people alive. We should know the boundary between ourselves and others - and we should respect those boundaries. We may believe that eating cheese is a mortal sin but be willing, even happy, even privileged to make grilled cheese sandwiches for those who believe otherwise.

I had to break into her monologue because I had to get back to the lecture and, frankly, because I was tired of it. She was about to stomp away still angry. I couldn't help it.

I said, "I'll pray for you."

She didn't find that funny.

Walking Robson

"I'm not going to do it," my voice was resolute. "No way, not this trip!" Joe and I were pulling into Vancouver having driven down the sunshine coast in pouring rain (hmmmmm) and alighted from the ferry. We were talking about the day we were going to spend in the city as our flight home takes off Saturday morning. There is a store I particularly like on Robson Street and Joe wondered aloud if we would go there like we usually do.

My reaction was swift. "Not on your life."

It takes courage for a fat guy to walk on Robson Street. Vancouver, in my experience, is the most fat phobic city on the continent. Every time, that's every time, I walk on Robson someone in a car hollers out, "Lardass, Fatso, Piggypiggypiggy." And I don't feel up to making the walk. Some other fat person can take on the responsibility for integrating Robson. Me, I'll stick to Davies - they are nicer over there.

Then I remembered listening to the self advocates the other day talking about teasing and bullying and life in the mainstream. They hated it but they understood that for them the cost of community was higher than it was for everyone else. I, of course, encouraged them. Let them know what they were doing - that they were making it easier for every person with a disability that followed them, that they were standing up to bigots, that they had a rightful place in the community and that they shouldn't give it up to anyone for anything.

Damn.

I meant those words.

But I really don't feel like walking Robson. I don't want to feel the tension of waiting for it to happen, expecting it to happen, fearing it happening. I don't want to deal with that - today. Shouldn't everyone have a day off from difference? From having to walk Robson?

But I believe that anyone should be allowed to go anywhere. I don't understand "white only" signs. I admire those that stand up for their rights - or sit down at their rightful place at the table. Really, I do. Seriously, I get it.

Fine.

It's just before seven in the morning here. At 11 o'clock today, I'm hitting Robson. Writing about this has been good for me. It helped me find my backbone again.

Hey, not only am I going to walk on Robson. I'm going to sit on a bench and eat Cheezies.

Take that Vancouver.

Comes The Dawn

I'm exhausted. No, I'm not just whining. I'm really tired. The good tired. The "I worked hard" tired that you feel at the end of the day.

Right now, I'm feeling hopeful.

Like the future is bright.

For the whole day, I taught a group of self advocates. They ranged in age from teens to ... well, frankly ... old. What a group. Powell River is a town that's had an active self advocacy movement for 14 years. And it shows. Really shows. The group had no difficulty in attending and participating. Learning was something that excited them - so many others I've taught have been fearful of the learning process having been taught in the past that they were 'stupid', 'dumb' or 'uneducable'. Not these folks.

The teen boys, were teen boys, rowdy, barely tamed, testosterone fueled. The teen girls, were teen girls, made of sugar and leather - sweet and tough. They spoke openly of their lives, of laughter and of difference. They all spoke of being teased and bullied, they spoke of being centered out and laughed at ... but ... here's the kicker ... they knew it was wrong. They knew it was prejudice. They knew they had disabilities and they knew they had rights. They wanted respect - for who they were.

They were articulate about the world they wanted to live in. As a group they were powerful. It isn't a stretch to see the seeds of revolution in these folks. Like minorities before them, they are discovering pride and purpose.

Mustang boys and dangerous girls can become adults who know how to face those who would oppress, who would 'know better' how they should live their lives. These kids, in a room with elders who cut the path ... who opened the doors to community living ... will ensure that the community remains, now and forever, the only option. The only place for people with disabilities to be. You will never hear those young voices echo in an institutional hallway. They're home and home with a vengence. Sure the boys smacked at each other during the presentation. Sure the girls rolled their eyes. Sure the older folks kept thinking, "Would those kids just shut up!" But me, I loved their noise ... their youth expressed so messily, so noisily, so beautifully bothersome. Bring on obnoxious teens - no more the cowed disabled. We've had enough of that. Now it's time for something very new - freedom.

Right now, I'm feeling hopeful.

I've just met the future.

And, as I live and breathe, it's bright!

What Child is This

I'm in Powell River, a beautiful community on the coast of British Columbia. PR is beautiful not just because of the ocean and mountains, it's beautiful because of it's people. I've just had a few minutes with the Powell River Self Advocate Group who are showing me a beautiful lavender binder with the picture of a little girl on the cover. To a one the self advocates are brimming with excitement ... no, that's not the right word ... pride, maybe? ... no, that's not the right word either ... love - perhaps. The picture is of a little girl from India named Reena. She was adopted through Foster Parents Plan back in 1999.

The self advocate grouped worked to raise money to sponser a child with an intellectual disability in a far away land. They wanted to make a contribution to the world and, even more a contribution to a little girl with a disability. They wanted, as part of the disability community, to make a difference. And indeed they have. They have all Reena's pictures here in the binder. She is beautiful - disability or not - she is absolutely beautiful. She looks through the pictures to the self advocate committee which sponsers her and the community she lives in.

They have all the letters and all the photographs lovingly kept. I'm reminded of visitng a grandmother who had kept momentos of her family guarded and tended in a simliar binder. That memory makes me smile, this group of self advocates may have disabilities but they understand family. The human family. And they are clearly proud of their daughter.

When I ask about birthdays and holidays, they all chime in, the excitement of discussing their child overwhelming them. They talk about the 'rules' about having to send parcels that are flat, small and of low weight. They've sent tee shirts and scrunchies for her hair. They are already planning for a New Year's present to be sent. They've learned that Reena comes from a different culture so they send presents that are a celebration of her life and faith - not their own. They've learned what all parents learn, that the needs of the child come before the needs of the adult.

The money needed to sponsor a child is raised by the self advocates having hot dog sales and raffles and anything they can think of to keep the funds rolling in. They take their responsibility seriously. It means something to them that Reena is growing up knowing about others, with disabilities like she has, care about her. She is not alone.

And looking into the eyes of the group.

Neither are they.

Here's to

Dressed all in black, the uniform of his job as a hotel waiter/service guy, he stopped by while I was having breakfast. His face was covered with concern. He told me that he had heard part of my presentation the day before - the part where I was talking about bullying and teasing. He told me that he knew a woman who was experiencing teasing and bullying, so much so that she was considering giving up her dream of college. Even though she had difficulty learning - she wanted to better herself and was giving it a go. But what turned out to be difficult wasn't the books or the academics, it was the others on campus. People who felt free to make life hard for her.

He had just been talking to her before coming in to the room to set up for the coffee break and he heard that I was talking about what his friend was experiencing. He didn't want her to quit. He wanted her to make it. So after the day was over, he was doing the final straightening of the room before locking it up. He noticed my new book 'the aRe word' on the book table. A quick look convinced him that the book would help her. He took it and gave it to her.

Last night he worried that he would get in trouble, indeed even fired, for this simple act of kindness. He knew that he shouldn't have taken it without asking but he knew that this woman needed support 'right now' not 'tomorrow'. So he apologized and asked to pay for the book. I was moved, kindness that comes out of left field always makes me emotional. I told him he did exactly the right thing and that there was no way I'd take his money. The book was his gift to her, but it was my gift to him. He was uncomfortable and I could tell he was still nervous. Could he trust me? So I told him flat out, I will not report this to anyone here at the hotel - not because I'm forgiving but because you did nothing wrong.

When it came time for the bill to arrive for breakfast, he had paid for my meal. The breakfast cost more than the book. But I let it go with just a thank you.

I want more of him in the world. I want to thank, by calling out here on this blog, his parents for instilling in him the kind of values that make the world a better place.

Here's to kindness - unexpected.

Here's to courage - unprecedented.

Here's to love - unlimited.

No To ALL Abuse

"Stupid," the voice is hostile. "Worthless," the voice means it. "Ugly, ungainly, unlovable," the voice is building up speed, intensity and fervour. This is verbal abuse. Who is the abuser? Me. Who is the victim. Me, again. If I was a staff hired to care for me, I'd dismiss him. This kind of behaviour is unacceptable. Why do I treat myself worse than I would allow someone to work in the field of disability.

But it's not just me. Recently I went to a deli and ordered a potato salad. The woman grabbed the wrong size container and I only noticed when she was half done. "Sorry," I said, "Could you switch to the large. I ordered a large."I was really polite because it wasn't a big deal. Woah, I was wrong. The poor woman started a stream of self-talk that amounted to verbal abuse. She called herself names, muttered about being stupid, slammed herself with past mistakes, compared herself unfavourably to someone named Maggie. It was awful to watch. I just witnessed horrible verbal abuse but I couldn't report anything to anyone because the abuser was the abused. I felt powerless. Hmmmm, just like I feel when I do it to myself.

Nicola was like that. As a woman with a disability she absorbed every negative thing ever said about her. She had a set of internal language that was inaccurate, incorrect and abusive in nature. Any staff who did that to her would have not only been fired, they'd have been prosecuted. It's not ok that Nicola engages in self injurious behaviour, it's not ok that we all do it. Nicola has a difficult enough time in the world. She needs to protect herself, not participate in her own abasement.

Our society has taught many of us to be incredibly critical of ourselves. To focus on our weaknesses. To be shamed by comparison to impossible others.

I think we pass it forward. We don't want to praise others, acknowledge others, because we've lost the ability to praise ourselves. Ask me what's wrong with me, what I'd like to change, I could give you a list. Ask me what I'm proud of, I'd get embarrassed and be unable to make even the slightest guess. I tell others to be positive but, in truth, I'm not. When I mean critical, I don't mean 'weigh the good and the bad', I mean ... bad.

Treat others as you would like to be treated, the old golden rules, makes no sense - if you treat yourself disrespectfully. The golden rule assumes that at the core we all have self worth.

I think it's time that we stop abuse. All of it. At Vita, where I work when I'm not on the road (I'm in Powell River river right now.) I am working on designing approaches aimed at creating a safe haven, an abuse free environment, and I'm wondering if this is the first step. Maybe we need to stop the abuser within before we can attempt to control the abuser without.

Next time your inner voice takes on that tone that will disparage you. Fire it. Send it to personnel. And hire a voice that has learned to say, 'Good job' every now and then.

What Do You Think?

In the darkness of the night flight, his computer screen glowed. His face reflected the light from his laptop and he worked diligently for most of the 5 hours we were in the air. I'm not sure if he was a preacher or a teacher but he was working on a powerpoint presentation on 'the royal psalm'. He had page after powerpoint page of notes and I imagined the audience being wowed or bowed by the sheer volume of the work he had put into it. Then, shortly before the flight ended, he flipped to another presentation. It had a much more interesting title. "What Makes God Laugh" Now I'm REALLY trying to see the screen because, frankly, I'd like to know what makes God laugh. With the state of the world the way it is ... I can easily imagine him crying but I have difficulty seeing the great Him typing 'lol' into a cosmic text messenger.

My fellow passenger didn't seem approachable. Not because he looked mean but because he looked busy. Intent. When I'm working on my writing, I hate being interupted because it's hard to keep focus in the first place but it's even harder to find the 'sense' of the words once the link has been broken. So I wanted to be respectful. I decided to ask him when we landed and he was standing in the aisle. But, as it happened, with a light flight he was up and out. And I was left to figure this out on my own.

Here are three things that I think make God laugh:

People who think that swearing is obscene but that greed, hatred and jealousy aren't.

People who think that their talent, or their money, or their vocabulary makes them better than others.

People who think that God's heart is only big enough to love them and their friends.

Hmmm, I look at the list now and realize - these are my pet peeves - and, even though I'm 'outsized', I can't speak for the Almighty.

Let me take another shot.

Here are three things that I think make God laugh:

Skinny black pants.

Freedom of speech without freedom of thought.

Loving ice cream and tolerating others.

Hmmm, again, that's ME. OK, I give. I have no idea at all what makes God laugh. I mean, I love the idea that He does, I hope He gets and night off every now and then. I know that often when I pray - it's serious to me but it must sound a lot like begging, pleading and bargaining to Him. I'm a trained counsellor and I wouldn't want to have to listen to me praying half the time. So, I hope He laughs and I really wish I'd asked the guy on the plane. So I need some ideas about this.

So, I'm curious, what do you think makes God laugh ...

Lovely Rita

Loneliness. There is a deep social pain from a sense of isolation in the world. There is a desperation for contact, for affirmation. Years ago I had do to observation in a high school hallway - a few minutes here and you understand why Goodall opted for apes. As big as I am there was an observation point in the school office that allowed me to see the hallway quite clearly. And there she was, Rita, standing alone in the flow of students. They rippled around her the way river water rushes by a reed. She might as well not even have been there. So visible, easy to miss.

For a while she did nothing. Stood, seemingly frozen in time. But then, I saw her face, she looked like she was waiting. They came round the corner, a group of teen boys. If groups of teen boys had a name - like a murder of crows or an exhulation of larks - they would be called a cruelty of boys. One of the boys, perhaps 16, would have been handsome if his face hadn't been scarred by arrogence, waved to her. Rita practically swooned. He broke away from the others and went to speak with her. Her body openned to him - she would have let him do anything. He knew it. So did the others. They found it funny - she knew, but in that moment didn't care.

The referral had been for 'vulnerability' - yes, she was making herself vulnerable. But it should have been for loneliness, for deprivation, for isolation. Here was hurt waiting to happen. One kind or another - both violent but only one a crime. It was hard to watch. Rita learned things from our work together, I taught her the ways of distrust and the purpose of boundaries. She was an eager learner, even if she didn't like all the messages I taught her. She escaped school unbruised but not undamaged.

A few years later, I am doing a workshop for teens with disabilities and I use the training film "No How" that has actors with disabilities in all the starring roles. The teens hated the film. They mocked it. Called out names. They completely disidentified with those with disabilities on the film. They weren't like that. They weren't 'retards' for heaven's sake.

To a one there was desperation on their faces. They looked to me, their teacher, to affirm that they weren't different. That they were 'like everyone else'. I saw their path. Loneliness and self hatred. Denied their community. Denied a simple place to call home. Denied their own individual, unique and beautiful soul.

We need to understand the role that 'community' has for those who are different. We need to understand why there are black clubs, gay bars, and even mensa groups. People need a place to retreat to - to relax into. In our zest for community and integration we have forgotten to incorporate membership - full and complete membership - in the disability community.

Volkswagon beetle drivers often nod to each other when passing on the street. The same happens when I'm in my wheelchair and see another person similarly mobilized. It's a simple acknowledgement, but it's nice. It's a hey, howyadoing. It's a moments recognition of membership. It's nice.

People with intellectual disabilities have a right to community, but more, they have a right to communities. Rita had no where to get affirmation but in a hallway from a cruelty of boys. She needed a teen self advocacy group where she got to laugh, her big beautiful laugh. To flirt, to be wholely adolescent.

There used to be a club in Toronto called the Friday Night Club. I don't know if it's still there. It was a social club for people with intellectual disabilities. I went once, with a group of folks from a group home I was working in years ago, to one of their dances. It was packed. It was loud. It was fun. People their made eyes, made passes, made connections. The atmosphere was electric. I felt the outsider. Like I should have.

I could picture Rita there. Having fun. I could picture those teens at the abuse prevention class all hooting it up. I found myself forgetting that I was staff and just tapping my toes to music. It was nice to be outside looking in ... it reminded me of who I was and more importantly of who they were - who they could be - and who they were when they were outside of scrutiny.

But there are those afraid of segregated activities ... worrying that they will hearken the return of the bad old past of institutionalization and isolation. Their concerns are well founded ... we need to be cautious to never, ever go back there again. But their concerns shouldn't contravene a basic human right ... the right to gather ... to self congregate ... to be alone with like kind.

Loneliness. It's unnecessary when there is a community waiting to happen. Like it does (or did) every Friday night in Toronto.

(If someone reading this knows if the Friday Night Club still exists, could you let me know? Thanks.)

Note to Belinda (my blogprincess) thank you for the hint on posting. That was helpful.

Oops

Sometimes I just don't understand machines. I'm not mechanically oriented - putting gas in the car is what I figure makes it go. Computers are a complete mystery to me, I use them, but I don't get them. Typewriters, now those I understood in my antiques road show brain. I remember neice Erin, who lived with us for a while, trying to teach me about computers. She'd look at me with that look that the young reserve for either the very old or the very daft and just gently shake her head.

This morning I came to post something for today and when I hit the 'view blog' button, it wasn't there. So, I doubled back and then hit the button again. It still wasn't there. Then I looked more closely at the blog and found that it was posted as if it was written a couple days ago. So, for you diligent readers who are interested, today's post is called "pause" and it's the second one after this one.

Why it's there, I don't know. Perhaps because I did a draft of it a couple days ago and the computer posts the post for the day it was drafted not the day it was published. But that's a guess. My guess could have as easily been - magic put it there - I ate my dessert before my meal yesterday and God is punishing me by messing up my blog - the butler did it.

You know at the speed that the world changes, sometimes I feel what it must be like to have an intellectual disability. I just don't understand things the way I used to. I used to be able to operate any photocopy machine I came across. Put the paper in, close the lid, hit the green button. Now it seems you need a pilot's licence to operate one. I used to 'get' music - now it's just 'turn that racket down' noise. I still like phones that just ring.

In honesty, I understand the Joe guy I wrote about in today's post that appears as if it was written two days ago for reasons I don't understand. I think the world moves to fast, that change isn't only constant it's constantly challenging me. Sometimes I just want to blow and yell at the entire world - CAN WE JUST STOP FOR A MOMENT PLEASE?

But I won't, but today, when we drive to the airport. I think I'm going to close my eyes.

To get what I'm talking about please see ... 'pause' below. This may happen again tomorrow because I'm working on a piece called "Lovely Rita" and if this does post the day drafted, it will appear after this note. Are you confused ... I am ... I need a nice cup of green tea.

(if there are any fellow bloggers out there who can tell me how to get my posts to appear on the day published, not the day drafted ... if that is the problem ... could you post a note to me please and tell me how to do this?)

Wholeness

A message, without a name, tells me that I have disappointed them. That I would come home 'for a dog' when there were 'perhaps hundreds' of people with disabilities that could have been helped through the lecture that I cancelled was 'ridiculous'. I'm told that my committment to people with disabilities must 'not be very deep' if I could make a decision like that. The message ends telling me that 'you aren't who I thought you were'.

At first I was stung. Then angry. Then, I thought about what they had said. In truth Joe and I had talked about this. That people wouldn't take our trip home seriously because it was 'just a dog'. That people devalue, not only others who are different - but others who are four-legged. But in the end we decided that our decision was ours, and it was about our relationship with Eric, not our relationship with anyone else.

So we came home.

Sometimes I worry about people who are in human services. Sometimes, and this will seem odd, I see too much committment to people with disabilities - such that it seems, ummmm, unhealthy. I'll admit it. Yes, I care about people with disabilities, specifically and in general, but not all the time, every moment, with every breath. I have a life outside of what I do. I have things I do just for enjoyment and I even do things that have precious little meaning.

I love the Young and the Restless, Suduko, and murder mysteries. I go to movies with friends, drink green tea by the gallon and spend endless hours with the dogs. During none of those times do I even think, for a moment, about the work that I do or the calling I have.

Yet I have seen staff leave sick children in hospitals to take a person with a disability to a movie - just because they promised them. I'm sorry, I think this is wrong. I think it sends the person with a disability the wrong message and I think it damages the staff in the long run.

There was a study done with therapy dogs that live in group homes. They found that the dog had to be out of the home, completely, for one week in four. Without the break the dog would become overwhelmed by the needs of the home and would become aggressive. This study has implications. Yes I know that the study was 'only about dogs' but doesn't it suggest that the weight of needs can become burdomsome. That the muscles involved in caring can become tired from overuse.

At a retreat recently everyone was talking about giving 100 percent and I shocked the room by saying that I only gave 80 percent. That 20 percent was mine and that I was keeping it. Now I know we all define 100 percent differently but I wanted to make a point. As the oldest person in the room I wanted to get these young'uns to think about their lives and the balance that they need to find. They were a great group and I wanted them to be here in the field thirty years later, not burned out and bitter.

So, no I don't regret my decision to come home. And no I don't regret putting it here on my blog. I thank that person for their disagreement with me because it made me think. Though I would suggest that people with strong opinions should put their names to them - otherwise it reeks of cowardice.

For those who are wondering - Eric is sitting beside me here as I write on the computer. The medications seem to have been working but we talk to the vet today. It was a good day yesterday with Eric, and whatever happens I will cherish those 24 hours for the rest of my life.

Pause

Every now and then life requires you to pause. Just stop. But the pause isn't just a halt, it's a call to refocus on what's important. To reflect. Joe was a guy who lived in a group home that was where I worked my last direct care job before becoming a consultant. He had moved from a large facility and was finding it very very hard to adapt to the 'outside'. Everything seemed to move to fast for him, everything just seemed overwhelming. Food had too much flavour, the wind had too much scent, the water had too much crispness. And Joe, like a circuit that's overheated, would just blow.

It was an awesome sight. He would suddenly leap up and screams would come out of him. We, all of us wonderful supportive people knew exactly what to do - panic. The neighbours, the ones that had protested the group home being there in the first place, could surely hear him. We were, in honestly, probably more concerned about them - about their complaints, than we were about him. Tantrum - but for gosh sakes - do it quietly.

One Friday night I was working with a woman whose name I cannot remember. She was a beautiful, small, San Francisco-haired woman. Something tells me she had a British accent, but I'm not sure. We looked at each other and then back at Joe. One of the others who lived in the house said, looking at us with exasperation, "He likes to go for a ride when he's upset, take him for a ride." We looked at her and said, like she was a staff and this was a discussion, "But what about the rest of you."

"Take us too," she said simply. We figured that she knew Joe for much longer than any of us, so that's what we did. We took Joe for a ride. We took everyone for a ride. Toronto is beautiful at night. We drove through the mansions of Rosedale and by the big Sam The Record Man sign on Yonge Street. Then it was over to Chinatown. A rain had fallen and the road was slick, but what was cool was that all the lights of the buildings reflected off the pavement. Add some music and you'd have had an intro to a great road trip movie.

Joe was quiet. Eerily so. I tired of driving so we pulled into Micky D's and got everyone a treat - hot apple pies that were as hot as the center of the sun - as Brad and Angelina's honeymoon. I switched to the passenger side and off we went again. It was a great shift - no paperwork, no work at all, just a long drive. Joe, who had quieted as soon as we mentioned the outing was sitting in the car, his eyes closed listening to the hum of the engine and the soft chatter of the others in the car. We all felt the peaceful safe sensation that you sometimes get on long drives in warm cars.

He was taking a pause. He was pulling himself out of the overwhelming demands of his day and that newness makes on the senses. He needed to just ... stop. Regroup.

Everyone else on the outing was looking out windows and seeming to enjoy themselves. But Joe just sat there with his eyes closed, MacDonald's pie in his hands, untouched. I began to speak to him wanting to ask him if he was ok but as I began, I felt a hand on my arm. "He just likes to sit quiet." I was told. She really could have been staff - she really should have been staff.

A few days later when Joe seemed to be chatty and happy, I asked him about the car rides. He said that he liked to go on them when he was getting upset. He said that in the institution they used to take him out when he needed to go. "Do you always close your eyes when you are out?" I asked. He told me that he only did that when he had a feeling inside that made him want to blow up.

This interested me and I asked him how he stopped the feeling. "I don't stop it," he said, "I just think about it."

"And that makes it better," I asked

"Yes, it does," he answered. He didn't explain. He looked at me like what he was saying was self-evident.

Well, I'm on pause right now. I'm thinking about the feelings. Not trying to stop them, just thinking about them.

It does make it better.

They don't go away. But when you think about them - the feelings that need to be thought about, you know them, anger, grief, loss, jealousy ... they don't ask that we act, they ask that we notice - like a sore on a foot that makes us limp, feelings make us take stock and take care.

So, Joe, all I can say is that I thought about you today. I thought about your simple wisdom and your complex needs.

And what I needed was just that - simple wisdom for my complex needs.

Worship

My heart is breaking.

Yesterday was wonderful. Green tea at a bookstore and early Christmas shopping were all that was on the agenda. Then at a little before 4, the phone call came. We didn't answer it in time so had to listen to the voice mail message. It was Susan. Her voice was grave. We were to call immediately. I misdialed twice, my big thumbs nervously missing the numbers. But she answered and immediately explained that Eric. My Eric. My little dog. Was seriously ill. She had taken him to the vet to discover that his 16 year old body was wearing out. Suddenly and without warning a disc gave in his back and his hind quarters stopped working. He was resting comfortably after a traumatic visit to the vet.

We weren't due home for two days. Three hundred people were booked to come and hear me speak on Friday. We cancelled. We packed the car. We drove nine hours home. I lasted until just past the Pennsylvania border and grief overtook me. I wept. I couldn't then, and can't now, imagine life without Eric.

He had come to us, like all truly wonderful things, as a surprise. The day we drove into the shopping mall and found an abandoned puppy wandering the lot - was not a day that we expected to meet such an amazing creature. I picked him up and he grabbed my heart and that was it. He came home.

You could feel the abuse he suffered under the fur in his skin and deep within his heart. While we would love him for 16 years he would always be, in his mind, an abandoned an abused dog. This is not to say that he wasn't happy because he always greeted life with such incredible abandon. He felt safe with ritual so we built many. He liked being able to predict what was happening in his world - he liked a sense of control.

I identified with him on so many levels. This is why, I think, that as he learned to trust me, I learned to trust him. Trust does not come easily to me. Though I look solid, my heart is skittish. Suffering an evil childhood, I boarded up different rooms in the mansion of my heart. It was those rooms that Eric scratched at - he wanted in. And in time, I let him. There is no part of my affection that is restrained with Eric.

I know each of his 14 looks. I understand all of his barks. He understands too much. He reads our moods and knows just what to do. Some where along the way, he went to cute school and can do more with his eyes that Bette Davis could ever imagine.

So we came home. Knowing that many will think us silly. But as Eric is being called home, he called to us to come - and I think he knew we would. Whenever we come home from a trip, Eric was at the door barking. But last night, arriving home at 2. The house was silent. We went in and found Eric asleep at his spot on the floor at the end of the bed. He looked up and wagged his tale like he was saying, "I knew you would come."

And now we wait. He is on some extreme medications that have a small chance in working. So we have planned the day to be full of Eric rituals. He loves to sit and listen to the story of how we found him in the parking lot but he equally likes the stories of how he got his name and how he ended up, mentioned by name, in the Globe and Mail. Then there is the 'housecoat ritual', the 'Dave stood up ritual', the 'your not just making tea ritual' and a zillion others.

Human beings use rituals to worship God. Today we, and Eric, will worship together. I will pray for his recovery - however slow. But whatever he prays for, we will do.

But I make this promise to Eric, here and now, "I opened the doors of my heart to you. I will never lock them up again." This is the only fitting tribute I can think of to the love he's give me.

Green Tea

A day off, a mall, a cup of green tea, life is very good. Joe has gone off to check to see if the bookstore has a book and I'm left to my own devises. I am an consumate people watcher, catching people as they are absorbed in the business of living is fascinating. It's like their guard is way down and their face becomes their own.

I see a mother with child her face full of frustration and her voice full of patience - it's a tightrope she's walking. I see a business type guy reading the entertainment section of the newspaper - the business section discarded beside him. He looks like he's indulging in a secret act of rebellion. I see a young guy with Williams Syndrome standing with someone (staff? mother? friend? not sure) who is looking through the magazines on the magazine rack. He's talking - it's gotta be Williams Syndrome - and his companion is absently nodding. I've done that nod before.

But the two that interest me are the two sitting at the table directly opposite from me. They look barely out of high school but they are clearly students. Not just students, med students. She has a book that looks like it weighs more than she does called "principles of surgery" and he has a text that's even bigger but with a title I never see. They each have a wack of printed handouts all covered with yellow highlighter. They are talking rapidly using terms that I don't understand but I think they are reviewing the layers of something because I do catch the word sub-cutaneous. There's a word I've never before used in a sentence.

They fall silent and look back at their texts. He is chewing his bottom lip. She is bouncing her leg up and down quickly. Vulnerablity and anxiety is written all over their bodies. They clearly care deeply about what they are reading and about the future they each imagine for themselves. Looking closely I can see that the care has worn on to both faces. His eyes look very tired. Her shoulders look like they could use an hour long massage.

Suddenly we all shift our gaze as the young man with William's laughs loudly at something that struck him funny. Everyone looks up. Mom - frustration leaving her face. Business guy - curiousity covering his. The two med students also glance up to see the source of mirth. They react differently. She looks a little disturbed - annoyed even. He looks relieved - as if he was grateful to be pulled from a sub-cutaneous world.

I don't know what was on my face - pleasure, I'm guessing. I like seeing people with disabilities out in the world.

Joe is on his way back and I can tell he hasn't found what he's looking for.

Then I look back at the two med students. She is back and busy reading the text. He has sat back in his chair, closed his book and is enjoying his coffee. He looks over at the young man who's leaving, still talking, behind his companion. Maybe I'm misreading him but he looks grateful.

In that moment, I wonder if he knew.

He had just learned something more important for a doctor to know than anything he would ever read in a textbook.

I know.

Because I keep learning the same lesson.

POCO HOR!!!!

"Poco Hor!" Philip is at the window and pointing furiously out at something that has caught his eye and made him extremely excited. "Poco hor! Poco hor! Poco hor!" his urgency is catching. At first, when I started working on the ward, I'd go stand beside him and try to see what he was pointing at. The first time, he grinned at me. A wide huge grin and his tone changed, "Poco hor!" now seemed more jubulant than urgent. I looked out the window, glancing occasionally at Philips finger to see where it was pointing. I made a few guesses but Philip had no real workable words. "Poco hor" was pretty much all he said and he only said it like this ... standing by the window and pointing out.

All the other staff told me that they had all tried and failed. None of them ever understood what it was that Philip was pointing at or why he was so excited. I had just graduated from university and had learned all about data collection and patterns of human behaviour. I told them that I was going to keep some data. I'd write down the days that Philip called out "poco hor" and write down what I saw while standing beside him looking out the window. I asked them to do the same so I could get a better idea of the patterns.

The idea was not met with enthusiasm or cooperation. This was a behaviour ward. Why, when we had to take data on aggression and non-compliance would we want to take data on a behaviour that didn't matter. Even then, new to the field, I was offended. "It matters to Philip," I said haughtily. They were unmoved.

For about three weeks every time Philip was at the window pointing and shouting, "Poco hor" I would dutifuly go and stand with him and look out the window. I only saw the same things. Thinking I was being clever I went to look out the window when Philip wasn't shouting 'poco hor' to see what was missing. Not for no reason I got that A in behavioural approaches. But there was no difference between 'poco hor' times and 'non-poco hor' times.

Staff were getting annoyed. Philip was increasing the time spent at the window and calling out 'poco hor'. He was doing it more on my shift than on other shifts ... how they knew this without taking data they couldn't explain. But I persisted into my fourth week.

It got so I walked on the ward and Philip would run to the window and shout, 'poco hor' and I'd go and take a look. He'd grin at me and we'd both look out the window. Now I love a mystery as much as anyone else but there comes a time when curiosity is no longer so curious. There comes a time to move on.

I gave up, knowing that I would never ever know what 'poco hor' meant. Philip still would stand at the window, still would call out 'poco hor' and would look for me to come. I told him for the first few times the truth, "I'm sorry Philip I don't know what you are pointing at." Philip looked crushed and I felt that I had truly failed him.

And I did.

I remember Philips face the first time I stood with him and every time I glanced at him during my data collection period. He beamed. Fairly beamed.

Duh.

"Poco hor," I'm guessing years later meant. "Please come and stand with me while I look out the window."

Sorry Philip. I missed that. And oddly, I have to say, I miss you too.

(Readers, this - like all the others - is a true story. Philip truly was his name and 'poco hor' truly was what he called out. Philip lived in Glendale on the outskirts of Victoria BC. If anyone reading this knows where Philip is now, please let me know - I'd like to drop in and see him and ... look out the window with him. I'm older now - I get poco hor. Finally.)

Little Bits of Eric

Walking down the hallway to our room Joe reached out and plucked something from the back of my shirt. "A little bit of Eric," he said by way of explanation. I smiled at the thought of Eric's fur travelling around the continent with me. He's my dog of dogs and he's deeply in my heart so he might as well be on my clothing too. In truth, Eric is really everywhere. His fur is all over the car, the carpet, shirts, socks, shoes ... everywhere and I wouldn't have it any other way.

I was thinking about this as I re-read what I wrote yesterday about Glen and Linda and Alice. These are people I spent a brief time with but little memories of them still cling to me - little bits of me has been changed by these people. This is what I love about human services. We are called upon to be human, to be in relationship to others, to be willing and ready to change. The process of service is a process of constant growth.

This should be true of all of us, in all walks of life - we should be changed, transformed by the relationships we have with others. But it's to easy to live a life surrounded by like minded people and like intentioned others. It's to easy to give up the challenge and stagnate. It's comfortable, to be sure, but it just isn't that interesting.

Some of the best discussions I've had are with people I really disagree with. They challenge me to grow, to think, to understand my position inside and out. I often hate it at the time but realize later that I'm thinking deeper because of the interaction. People are untamed creatures who just will not behave the way I always expect them to - damn them. And because of that, I'm pushed out of my rut and on to a more interesting road.

Being in service to people who have lived different lives than I have, who have see different things and been to different places is often challenging - but it's fun - and, more importantly, it changes me.

So not only do I have Eric's fur on my shirt, if you look closely you'll also see Bob's laugh there, Janice's energy, Philips 'poco hor' ... and the list is endless.

Wisdom

It was called a 'pre-vocational' programme. Back when 'pre' meant 'never'. The folks who came to this particular day programme were a rag tag bunch that really only had disability in common. They came and went to various 'groups' that were set up during the day. Let's see there was my exciting 'numbers' group where I had puzzles in number shapes and where we reviewed 1 to 10 every day. Exciting stuff this. There were other groups too like 'cooking' (where learning how to boil an egg got you a diploma) and 'hygiene' (cleanliness is next to godliness but not stinking was the more earthly aim).

As much as I mock it now, and understand that what we were doing was silly, we were all in earnest then. We really did want to teach those whom society had deemed 'uneducable' it seemed more noble than hopeless. And I have to admit that they did learn. Some actually did learn their numbers and none of them, that's NONE of them stank at the end of the day. Sure times changed and I'd do it differently now - but the goals of that time are the goals of 'this' time - that people with disabilities be given the opportunity to learn and participate.

So daily we all went through the paces set for us. We kept track of progress in binders and even then the paperwork seemed daunting. I still remember faces. Linda, a deer sweet woman with Down Syndrome, who aged effortlessly and had the most gentle touch. She spoke words without a voice and would always smile when glanced at. She never got the numbers but she liked the puzzles. There was always a deep sadness in her eyes when she knew that she'd disappointed me with her progress. But the sadness never lasted long - she was, in her way, used to disappointing others with her mind so she made up to us with her heart.

But, this is about Glen. He just disappeared into the woodwork. He never stood out, never wanted to. He wasn't a behaviour problem. He was the kind of guy that, when you discovered one person missing and listed the group in your mind, you'd have to grasp for his name. He came, he participated, he went home.

But one day, it had been a very tiring numbers class. I wasn't in to it. Neither were any of them. So I gave up and we just chatted for the last fifteen minutes of the class. I sighed and said, more to myself than them, "It's been a long day." Glen responded seemingly without even thinking, "Yeah, the years go fast, it's the days that take a long time."

That little bit of insight, let me say it right, that little bit of wisdom had me look at Glen really for the first time. There was someone inside Glen's body, someone inside Glen's mind. There WAS SOMEONE HOME. Then I looked at the whole class. And for an instant I had clarity. I could 'see' Linda - the woman who lived in her body. I could see Alice - really see her. All of them where there and present. They were always there, I just never saw them.

You know I've sat through entire classes given by lofty, degreed, professors and never heard anything approaching the profound simplicity of what Glen said. A lot of people have a lot of words and little to say. Wisdom gifts whomever she chooses, I've discovered.

But that day, the day when Glen revealed himself, I was to learn that in every single human being, there is always someone home - you've just got to knock. This was for me the beginning of the very long journey towards wisdom.

Umm, like, umm

"Ummmm, sort of like, ummmmm ..." he was struggling to tell us a story but was having a deuce of a time of it. Words just weren't coming to him. This is unusual because Joseph, for a 12 year old kid, has an amazing vocabulary, a quick wit, and a way with a story. He recounted a story of burning his mouth on a hot drink saying that he'd 'forgot the laws of physics' and drank it two quickly. This is not a kid that finds communicating tough.

Yet here he was struggling to tell a story. We couldn't help, or prompt or assist in any way because we didn't know where he was going with the story, primarily because he couldn't get it started. All we were able to figure out was that it happened at school to another kid, that he didn't do it and that he wanted to tell us about it.

Finally, he described the kid as someone who needed a lot of help in school, who was different than the other kids, who had some problems learning. "You mean 'disabled'," I said. "Yeah," he said, relieved to have that out of the way. Then he went on with his story.

I didn't say anything to him but I was really proud of him at that moment. When we first met Joseph, the word 'retard' tripped easily out of his mouth. "That's just way retarded," would be a way of reacting to something. But Joseph soon learned that this wasn't a word to be said around us. We explained, to his disbelief at first, that it was similar to bad racist words.

Even though we know that 'the word' is everywhere, even on the lips of those who should know better, he respected our wishes. It's been a very long time since the subject of 'that word' has even come up and frankly, I didn't notice the change. I don't hang with people who use the word so it's absence wasn't particularly noteworthy.

Until Friday. A Joseph day. And he's trying to tell a story about one kid teasing another kid. The kid being teased was "ummm, like, ummmm ..." Well, "ummm, like, ummmm ..." takes a lot longer to say, I prefer it to 'that word'. It was cool that he worked so hard to avoid a word that we've taught him is hurtful.

Trouble is he didn't have a word that he knew could be used. Difference needs to be explained to kids with words that aren't charged with prejudice. Joseph recognizes difference and his struggle to find words shows that he is coming to be sensitive to the idea of respect. Part of the point of integration, I would think, is that kids learn how to talk to each other ... but also to learn how to talk about each other.

It was a nice moment. Though we've never had kids, we felt like we'd done a wee bit of parenting if parenting is passing a value on old to young.

How cool is that?

Try This At Home

To learn how to do inclusion right, watch Jackass - the sequel. I'm not kidding. Johnny Knoxville and friends do some of the grossest and some of the funniest things I've seen on screen in a long time. We laughed until we hurt. This is a movie that I've heard has no redeeming social values. But I beg to differ. Quite a bit actually.

Jackass has a moment when one of the guys from Murderball (the documentary about wheelchair rugby) is shot at amazing speed into the air and plunges, chair and all into the lake. No comment is ever made about his disability, who he was (it was like the Jackass guys - who the truly informed will know appear on the Murderball DVD in the extras - just assumed that the whole audience was cool enough to know) or how he came to be a human rocket for the film. It just had him participate like anyone else. I'm not sure people in the audience really knew that he had a disability, they could have just been using a wheelchair like they used shopping carts - another mode of transportation to be made dangerous. It was about the stunt - not about the chair, or even really the guy in it.

The movie shows that it doesn't take work to be disability positive, it just takes a lack of negativity. Here a disabled guy isn't treated as fragile he was treated as a projectile.

But there was something else.

Something awesome.

There wasn't just a lack of negativity. There was something else missing. They didn't once say it - the 'r' word didn't make an appearance once. It was notable by it's absence. When Johnny Knoxville was in 'The Ringer' his character made a statement that he would never ever let anyone say 'Retard' again. I know that Knoxville was playing a character who learned something. But perhaps Knoxville, himself, learned something about sensitivity when he worked with actors with disabilities on 'The Ringer', perhaps he learned something about diversity when he agreed to do a bit for the Murderball CD.

Maybe Knoxville can make disphobia disappear (at least in his wake) just by refusing to use hateful language and by refusing to discriminate in casting.

Wouldn't it be nice if kindness became cool.

The movie asks the audience not to try any of the stunts (I can promise, here and now, never to eat the poo of any animal) but I hope that the audience noticed that the biggest stunt they pulled was inclusion - and done right, it will make a big splash.

Giggle

One of the first comments I got on this blog was by someone that was offended. Sheesh. The comment, not left here but sent to me personally at my home email address was: "What's with the constant references to fat? I think you have a real self esteem problem." Woah! How's that for paying Lucy 5 cents for a psychiatric consultation. Firstly, pardon me? Second, what? Third, please!

What ever happened to having a sense of humour about yourself? You know why comics are funny - because they laugh at themselves. It's healthy for heaven's sake. We've all begun to take ourselves way, way, way to serously. As a fat person, I distrust people in thin skins. We get through life by laughing. At least I do. Golly (dontcha love that word) fat people get jolly as a stereotype - beats the hell out of skinnies and 'roid rage.

Today at work, I had to meet with Donna and Lina about something really serious. It was intense. It involved problemsolving. It was hard work. But you know what I remember about today. Lina's kick ass shoes. (Those heels could pierce a baby's heart.) Donna's problem with shot glasses. (Don't ask.) Theresa and the gay giraffe. (Really, don't ask.) Manuela and the body parts. (I said, don't ask.) I remember all the laughter that poured out of that end of the office.

I came home with no stress from the meeting because we'd covered the meat with gravy. Poured chocolate sauce on stress. So, I think 'chewing the fat' is just funny. It has no ... NO ... subtext. It isn't about self-hatred. Sometimes a cigar is just a cigar and sometimes funny is just funny.

The other week I was in Chicago with Susan, from the other place I work, and we were about to present at a conference where every shirt is stuffed and every ego fluffed. I get nervous here. But though the talk was serious - about serious stuff - and the conferencee ATSA (Association for Treatment of Sex Abusers) has a very lofty aim. We sat in a huge convention room, having got there hours early and giggled that ATSA was held in a hotel on Wacker Street. We both think that's funny. There is humour in EVERYTHING and every situation.

Our presentation went smoothly. Laughter took the nerves out of the room for a stroll, bought them an ice cream and brought them back ready for a nap. Whenever something seems too absurd to be true I'm going to look at Susan and say, 'Wacker Street."

OK, here's what I believe, I think that every time we have a good chuckle we take a step back from the line that abusers cross. Secret out, I truly believe that. I think that laughter looses our grip on power and eases the pressure on the ignition switch attached to our temper. I think that people who laugh are people who will stay sane when insanity surrounds. So, I'm sticking with Chewing the Fat, I'm ignoring people who find the serious in the absurd.

It is my wish that I finish my days in human service without ever having to go to the confessional and repent abuse. And if it takes laughing at myself ... or you ... to keep that from happening - so be it.

Client Cooking

Since becoming vegetarian eating has become a little more difficult. I have to plan ahead in order to ensure that there is something that I can eat available. I'm fat. I don't miss meals. Ever. One of the offices that I regularly consult to has a nice little kitchen in a cubbyhole tucked just off the hallway. It's a tiny space but regularly filled with people chatting, getting coffee or using the microwave. Whenever I visit I always bring some kind of frozen entree and pop in to make lunch but also, truthfully, to socialize.

It's an interesting mix in that office kitchen. Because a day programme runs out of the office popping in means visiting with staff or people in service. Because I'm there only a couple times a year, there are always new faces - therefore new stories. Like many homes, the kitchen here really is the heart of the place.

Last visit there I popped in just before lunch - who says lunch has to be at noon, sometimes it has to be at both eleven AND one. Get real - try some diversity. Anyways, I was really looking forward to lunch because I'd bought a frozen Indian vegetarian entree that I'd picked up at a small vegetarian specialty shop. It looked great on the picture. I walked into the kitchen and there sat a woman with a disability that I'd never met before. She was a large woman wearing a nice dress and a well fitted sweater. She said hello to me in a voice that, if I closed my eyes, I could imagine on a 50's film star ... all booze and cigarettes.

I greeted her in an off hand manner and tore open the entree and then, turning the package over, I realized I couldn't read the cooking instructions because I'd left my glasses in the office they gave me to use. Now it was two doors down. That's a long walk when you're faint with hunger. So I just put it in the microwave and hit '2'. This particular model has an 'express' function such that when '2' is hit it automatically goes for two minutes. 120 seconds later the bell rang and I checked the food to find it still quite frozen so I hit '2' again. 120 seconds later the bell rang and it still wasn't quite done. '2's the way to go so I did it again.

As I stood waiting another staff came in and asked what I was making. Before I could answer the woman with the disability answered. "He's doing client cooking." I laughed as the other staff asked her what she meant. "He only knows how to push the two - they only ever teach you to push the 2." We all laughed until there were tears in our eyes.

Yeah it was funny. But what if she's right? What if we only ever teach people with disabilities one solution, one way to look at a situation, one way to be in the world. I remember assessing a gay man with a disability in a prison who could tell me about fallopian tubes but had never been taught about being gay - because the instructor wasn't comfortable with that. Hold on - that's client cooking, man. I remember meeting a guy who got in trouble because he'd been taught only one greeting skill - hand shaking - and he got in trouble because ... well, there's only one thing you shake at a urinal and that's NOT the hand of the man next to you. That's client cooking. How about the woman who upset her mother because she refused to hug her because 'hugs are only for boyfriends'. That's client cooking.

Life is complex and demands complex solutions. Teaching people to think and weigh options, to rummage through skills to find just the right one, that's the way to do it.

Push '2' sure ... but occasionally ... just occiasionally, live dangerously and maybe push 5. See what happens.

NTASD

I think I've grown jaded. The things I talk about in a day - for work - would make my mother's teeth fall out. I'm at the point where there is little that shocks me. Working in a sexuality clinic for several years you kind of hear it all. I remember being asked to do a keynote speach for a conference on sexuality about how those that work at the respected end of the sex trade can keep a joyous approach to sex when daily you trudge through the muck of human relationships. Let's just say that my talk ended up on the front page of the paper and shocked half the audience - never been invited back to talk again.

All this is to say that little shocks me. Until the other day I thought that maybe I was well past shock. So much so that I'd even lost the desire to shock. If I'd written this piece a few years ago, I'd be throwing in some wild stuff to illustrate the point - but, yawn, I don't care to anymore.

But the other day, I was truly shocked. Taken aback. Surprised, even. I was at work and visiting a group home. A woman with a disability was having a truly, truly bad day. She was being supported by a young male staff who was being as gentle and supportive as it was possible to be. But this woman was having none of it - her peace was disturbed so she chose to disturb the peace of others. She went on full attack. This man, who had only been kind to her, was her target. The words that came out of her mouth were vile, racist and full of taunt. She practically begged for a reaction.

She was met - right there with anger seeping out her pours - with his grace. The kind of grace you read about in books. Hear about in prayers. Think of as mystical. His calm wasn't shattered, hurt didn't form in his eyes, instead concern was written all over his face. Slowly she calmed and slowly she regained what control she needed to stop her attack. I don't know if she ever apologized. I knew, that for him, her quiet was enough.

I sat in the car moments after this had occurred and I felt deep shock. Not at her words. No, I was shocked by him. Who was this guy?

Where did he get that calm, that loving concern. From what source does that kind of caring spring? You know, just from hearing the tenor of his voice that he's not paid to say the words he says to soothe her - he believes them.

Why do those who have to care in the face of hostility get honoured the least in our services? I wonder if those in position of real power - funding power -payroll power -respecting power have any idea of the quality of people we have working in care for those with disabilities. Even I, myself, get distracted by what's wrong with care, what's wrong with staff, what's wrong wrong wrong.

Then, I'm hit, square in the face with grace and calm and intense support. Broadsided by a simple act of caring. And I'm shocked. Shocked by all that's right with what we do. Not only right - magnificent. I'm shocked, further, by the fact that he isn't alone. That he was just the one that I saw at that moment.

I hereby declare tomorrow (which means the day after you read this) as thank a staff day. It's National Thank a Staff Day. It's time to acknowledge those moments wherein the sheer beauty of human services shines through. It's ok to feel unabashed pride in what we do. We can work on fixing the rest the day after tomorrow.

Passing

Movies! I love movies. A chance to escape the real world for the reel world. We had finished a three day lecture tour of northern California and had a day off before flying home. We had two goals, a movie at the AMC on Van Ness and Chinese food from Wing Lum's on Polk. It's nice to set the bar low! When in San Francisco, if we're going to a movie we always check the AMC first. We were there several years ago and noticed that they hired many people with disabilities who worked in real jobs doing real work. I like diversity. I like seeing it in action. I'm loyal to places that see diversity as more than colour but as texture as well. I feel that way about the AMC. And besides I had a experience there that has become a staple in one of my lectures. I owe'm.

Joe had gone off to buy the tickets and I sat in my wheelchair near the velvet ropes that guided patrons to the ticket taker who stood guard over the entrance and the ripped ticket box below him. Since it was early in the day, there were few patrons around so I wheeled over to talk to him. At first he seemed a bit nervous, wondering why someone would just strike up a conversation. But he relaxed a bit and told me that he had been working at the theatre for a few years.

To someone who just glanced at him in the way people just glance at service people, most would not have noticed his disability. Unlike mine, big butt stuffed into a wheelchair, his wasn't so obvious. But there are ways of noticing and conversation brings out most of them. He was very careful at first when he answered questions. He was used to being 'found out' I could tell and wanted to avoid whatever he imagined might happen.

He explained to me that he only works during the day, it's not so busy. He tried working at night but there were too many people and too many of those people were rude. I'm not sure what he was referring to but I could imagine. It took a while but we managed to get in a good chat while waiting for Joe to return with the tickets. I pointed out that the tickets were on the way and he looked disappointed that our interaction was nearly at end.

"What's it like?" he blurted out.

"Being in a chair?" I asked.

"No, having people look at you all the time."

There was little time to talk and he clearly wanted this conversation private. So I told him that I'd been stared at my whole life. First because I was the 'walking fat' now because I'm the 'rolling fat' - so there is no difference. He looked disappointed, this wasn't what he was asking.

Joe slowed to look at a huge advertisment for an upcoming movie we're both interested in seeing. I rolled in closer to the ticket taker.

"I'm proud, you know, to be disabled. I'm proud of what disabled people acheive. I'm proud of what we acheive. Every day. I don't like being stared at but I wouldn't change it for the world."

Joe arrived and he took our tickets.

As I rolled by him he handed me my stub and whispered. "Neither would I." And he burst into a huge grin.

He had just come out to me as a disabled person. He had worked so hard to 'pass' during the conversation and he decided to throw it all away and identify with me - with our people. It was a nice moment. A little moment, but a nice one.

Self esteem (real honest self esteem that isn't about denial but about acceptance) is at the top of what we call quality of life. I think that's part of what we are here to do. But that's part of another post at another time.

They Treated Me Like ...

It was a relief to see her. We had heard, long after the fact, that she had been in a serious car accident and had only recently returned to work. A few details filtered down the phone line, about loss of conciousness, rehab and the like. We only saw her a couple times a year when we consulted with her and her agency, and it had become like spending time with a friend.

So there we sat at dinner listening to her tell us the story of the accident. It was truly miraculous that she was here with us. She described her continuing struggle to find words - when words once came so freely to her. Her difficulty in remembering when she needed to. Her general progress back. Then she said that one of the things that truly bothered her is that she was occasionally 'treated like a client' by those who she worked with. I sure got that having had that experience in the past.

Today driving home I thought about the comment. When it was made something rankled me. Now it became clear. I understood what she meant - that being treated like a client WASN'T A GOOD THING. This is something we all really understand. Here we are service providers hoping that we are never in the position to be treated like one we serve.

Ain't that a bit scary? Shouldn't we all do our jobs so well and with such respect and care for dignity that being treated like a client would be something that we'd all anticipate rather than fear.

I made a pledge in the car on the way down - treating someone like a client, for me, will mean treating someone well - with the honour they deserve, with the tolerance and compassion I will no longer reserve for only some, with the belief that God personally lights their eyes.

It is no secret that I've always seen human services as sacred work. As a mission. That until we see the wholly-ness of a person that we will always mis-serve them.

So, this is my missionary position -- humane service for human services.

I Will Not Cross

continued from previous post ...

Why the behaviour ward? I think, in all honesty, it was because I was (am) big. All the male staff were huge hulking men ... all the female staff were the kind of women that you'd have expected to be female pilots in WWII, no shrinking violets these. The ward was odd, it was a place of violent behaviour and violent controls, yet it was painted with cartoon characters all over the walls. It was a bit disconserting watching one of the clients attempt to smash a staffs skull up against Mickey or Minnie. It was even more disconserting to watch the staff establish control over and over again. No matter how often they tried, they always, in the end failed.

What struck me as particularly interesting was John. He was a lean man with a shock of red brown hair and a wallet crammed with photo after photo he'd cut from magazines. If you took the time to let him show you the pictures, he'd tell you that they were pictures of friends and family. He'd look hard at your face to see if you believed him, it was as if our belief would make it real. John was probably the most dangerous on the ward. He was receiving electroshock therapy and would be taken to the Mental Health Centre to receive the treatments.

I went with him once, he knew what was going to happen and he was afraid. He looked at the pictures in his wallet the whole way there (he didn't remember he had a wallet on the way back) and he spoke to the photos in a low chant - begging them to stop what was going to happen. I was new, I didn't know. They strapped him down, shot him with a drug that rendered his limbs useless - then they ran currents of electricty through is body.

After a time, I rode with him back to the ward. He wasn't just subdued, he was absent. All of us on the ward were fearful of him. His reputation was that just shy of iconic. Yet, now for the first time ever, I realize that I'd never seen him act out. Never get violent. Never live down to his reputation. But nevertheless I, like everyone else, feared him.

Until one morning.

The cleaner had come on to the ward somewhere around 4:00 am. I was working the overnight and I was astonished to see John peek out of his ward bedroom and look to see where the cleaner was. It wasn't hard to spot, or hear, the cleaner who was using a huge industrial machine to wash and wax the floor. John waved to the cleaner who waved back and smiled. Then John came out and walked with him. They chatted as the machine made its way back and forth across the floor. Neither of them realized I was watching.

There was a calmness about John that I'd never seen before. His wallet, which he was never without during the day, was left behind. It took almost an hour for the floor to be done and for the entire time they walked together. Casually spending time together.

As the cleaner let himself out of the ward, John made his way back to bed and I called to the janitor. I asked if John did this regularly and was told that every time the floor is waxed, John came and walked with the cleaner and chatted. I asked what John had talked about and was looked at like the gestapo asking a priest about confessional. I dropped the question. The cleaner said, "I don't know why he's here, I've never met a more gentle man."

And he was gone.

He met John where John was and John became who John was. This man, a staff like me, established rapport easily. He never abused the power that the keys gave him. He showed me where the line was ... and in his way ... dared me to stay on the right side of it.

There Is A Line

Waking up at 2:30 without the power to fall back into slumber is disconcerting. In the darkness, in the quiet, there is nothing to do but think. And the things one thinks about at 2:30 in the morning are much different than anything thought about during the daylight hours. For me at least. This is when I take full stock of myself. In the clear light of day, I can delude myself. In the thick of darkness, I cannot. I hate this.

I thought, last night, about the early days. About "Lodge 11" at Glendale. About first walking into the ward and first having to decide who I will be. No one told me that providing service to people with disabilities was nothing of the sort. No one told me that power would be thrust into my hands and I, like a emperor newly proclaimed, had to decide who I wanted to be. I had the power to actually decide who I would be in relation to others.

Too new to know that every single person who worked on that ward, and every single person who would ever work in care providing, had to make the same decision. I decided, then and there, that I didn't want to misuse the trust given me. (It would be years until I learned that what I thought was trust was merely subserviance.) I walked up to a man with a disability who had a comic face and a relaxed demeanor. I thrust my hand out to greet him.

He flew into rage. His hands grabbed at my face and got hold of my hair. His knee slammed into my groin. In seconds I was on the floor watching him being carted swiftly into a time out room.

I had arrived on the behaviour ward.

It's now 3:30 and I've been awake for an hour. The memories of Glendale haunt me. Not because of what was done to me ... but because of what was done to them. It only now really hits me - with the force of a knee - how he saw me. Who I was to him. What I was to him.

What I want to do here on this blog is to think, aloud, about what it is to be in a position of service and a position of power at the same time. About those I've met along the way. This blog is about remembering as well as about imagining.