New Year's Eve

He sat in his wheelchair. Green around the gills. Slowly a line of drool formed and reached all the way down to his lap. His eyes closed and he tottered forward and woke only when his head cracked on the desk in front of him. My boss looked at me coldly. I knew I was in deep trouble. I had moved to Toronto, leaving Smiths Falls and the large institution behind me and took a job with the Toronto School Board as a classroom aide for students with physical disabilities. The high school had a special homeroom for students with disabilities but they took all their classes with non-disabled kids in the rest of the school.

Sean was hung over. I had planned an 'outing' for a bunch of the students to a restaurant in downtown Toronto. Well, what I had actually done was say, I'm going to dinner at the Flying Circus restaurant and anyone who wanted to join me could just come. That wasn't actually possible because they all had to arrange their transportation. So I knew upon arrival that six students were going to show. Sean arrived, steering his electric wheelchair carefully through the tables to where we all sat. Sean has cerebral palsy and was only able to speak through the use of a letter board. As soon as he got there he indicated that he wanted a beer.

We were just fellow diners, I wasn't being a staff. (Though I would learn years later, this would never be true.) I asked him if he'd ever had a beer. He said 'no'. But he was legal. If he wanted a beer, we'd get him a beer. It arrived and I got out a straw for him to drink through. The first sip brought a look of horror to his face followed immediately by determination. In a second I knew that Sean meant to get rip roaring drunk.

As dinner progressed Sean ordered beer after beer. At one point the waitress, a pretty blond, said to Sean, "Are you sure you're going to be able to drive that thing?" as she set down another beer. Cerebral palsy took Sean over as he laughed so hard that he knocked everything flying and got everyone's attention in the room. Looks of horror, looks of disgust, looks of amusement - a whole gamut of reactions to Sean the drunken teen with cerebral palsy. They'd all have a story to tell.

The only way that you could really tell that Sean was drunk was by the fact that he'd decided, to hell with the letter board - he'd talk and damn it we'd understand. And, oddly, his speech was improved. He did everything but sing and wear a lamp shade. At one point Joe leaned over and said to me, "You are going to be in such shit tomorrow."

When I arrived at work, the teacher looked at me and called me over to her desk. Sean's mother had called and asked to speak to me. Sean had thrown up all over the bus on the way home and all through the night. She handed me a number and told me to make the call. I looked over to where Sean sat, he looked like death warmed over, a corpse in living flesh. He looked up at me and didn't even attempt a smile. His head dropped down and you could hear snoring half way down the hallway.

I called Sean's mother. She answered and I told her who I was. When she heard my name she started to cry, composed herself and asked if I could give her five minutes and then call back. Holy shit, I was really really in trouble. I sat there picturing a lawsuit. How much damages could someone get for a hangover, I wondered. Then I called back. His mom answered, calm now. She told me that she just wanted to thank me. That every one of her son's had come home stinking drunk at some point in their high school years and she thought that Sean would never have that experience. She started to tell me about the mess he made, the throw up, the pleading to skip school, her lecture about drinking and her forcing him out the door. She was finished with the crying and started laughing. "He was so sick, how much did he drink." I told her that he'd really only had a few beer. I didn't think that I was lying because a few is more than two and less than twenty.

Sean was over his hangover by the next day. But he was changed. He was a teen boy and he'd done what teen boys do. He'd gotten drunk. He'd thrown up. He'd gotten yelled at by his mom. A new year had started for him.

I don't believe in an artificial new year. A new year can start on March 21st, or on June 12 or October 23rd. When something changes in you, a new year begins. When a new idea changes your mind, a new year begins. When an experience alters how you see yourself and your world, a new year begins. So, I wish you - this calander new year, another year's opportunities to be made new, to think afresh, to realize again.

I'll be in bed by ten ... don't call.

If The Shoe Fits ...

At tea the other day Belinda presented us with a home made apple pie - sugar free. Belinda knows I can't eat sugar and though she had to make my pie differently than all the other pies she made she did it. For me.

And what's weird is, she never called me hard to serve, she just called me her friend.

We all went to lunch together to celebrate the holidays but also to celebrate what we'd acheived together as a team. The Vita "Intimacy and Relationship" team had accomplished much in a short period of time. Rosalie called ahead to make sure that the restaurant had vegetarian options. I haven't eaten meat in years so I needed a menu that had options that only I would choose from.

And what's weird is, they never called me hard to serve, they just called me a colleague.

For my birthday last week we stayed at a hotel in Toronto and had dinner with friends. The hotel room was fitted out with bars around the toilet and in the shower. The room was laid out in such a way that there was lots of room for my wheelchair. All the things I needed, things that other travellers never think of were there.

And what's weird is, they never called me hard to serve, they just called me a customer.

When I visit my brother, Larry, he always makes sure that there is a huge supply of green tea available. Though he and his wife like coffee - all sorts of coffee - I've never come to like the stuff. The aroma of coffee is wonderful and goes really well with my green tea. Even though they have to pick up something specially for me they don't seem to mind.

And what's weird is, they never called me hard to serve, they just called me family.

But I adapt too - when we have friends for dinner, one doesn't like blue cheese, one doesn't like mushrooms, one likes her food bland, another likes it spicy hot. And Joe and I pour through cookbooks to find a meal that will suit everyone. Sometimes we cook the base and then get pots out and spice three pots differently.

And what's weird is, we don't call them hard to serve - we call them other names - but that's never been one of them.

How come we get to be different, have our differences tolerated?

How come we expect our uniquenesses to be accepted and accommodated?

How come we have a sense of our 'right' to individuality?

How come when someone with a disability expects accomodation - for individual needs and individual preferences - suddenly they are seen as exceptional? difficult? problematic?

I admire the 'hard to serve' cause they've managed to withstand programmes and practices to maintain a sense of self, a modicum of independance and a wack of individuality. What a spirit that must take.

H2S 4ever

(idea for post comes from one of the rare conversations with Lina that didn't involve shoes)

A Simple Chat

It was a simple enough task. I was to do an interview with the Executive Director for the staff newsletter. I enjoy doing interviews, it's a chance for two people to have a planned chat. No phones, no interuptions - it's talking, it's work, it's good. I'd worked with Manuela for several years as a consultant in various capacities and for almost a year as a staff for Vita. There were no ground rules for the interview so I approached it to find out what interests me most about people in this field. Why here, why now, why the passion?

But I wanted to be careful. I knew that Manuela had had a son, Andrew, with a disability. I knew as well that Andrew had died a few years back. Even though this was the staff newsletter, not the Globe and Mail, I still feel that the media (in any form, large or small) can be too intrusive into people's private lives. Yet I wanted to ask her how having Andrew, as her son affected her in her role as an executive director. Did the experience of disability, close up and real change how she saw what the system should be? Did the 'politics of the personal', I think it's called, affect every day decisions that she would have to make? Did the voice of other parents sound different in her ear - having walked in their shoes?

Manuela, knowing that because of my size and my disability, I find many chairs either too narrow or too low almost always comes to my office when we need to chat. So she settled in and we began. I could tell, right off, that asking her about Andrew was OK. Many people avoid talking to family members about spouses or children lost. I have never understood that, they lived, were here, and continue to have presence in mind and memory - why NOT talk about them? When his name was mentioned Manuela smiled and began to talk about her own journey, of coming to accept Andrew's disability and then having to learn how to advocate from the other side of the table.

She saw how rules were set up that differentiated children, that inconvenienced families, that made difference something that separated - not something celebrated. Suddenly the world seemed different to her, that she was being asked by professionals to see her son as they did - a problem to be dealt with - a difficult need. Local schools and hospitals wanted him shipped off to somewhere else, somewhere special, anywhere away. Suddenly she understood community at a deep level. She saw the real need of her son to simply belong, to a family, to a neighbourhood and to a community.

Would this affect her philosophy, decisions and actions. Of course it would. Of course it should. And of course it does.

This is what is wonderful about working in human services. We are called upon to be human, to look at our experiences and learn from them, to use ourselves as a wellspring from which we can water the gardens of gentleness, tolerance and respect. You will note on this blog I speak a lot of my experiences with others, my experiences with difference and my experiences with the life I've been given. I do not do this as a form of 'chronic self disclosure' (as someone accused me of doing in my lectures and books) but because I believe that we each have a multitude of answers and solutions at ready glance. We need look within - to our own humanity - our own needs - our own failures and frustrations - to discover the path.

Years ago when someone I loved dearly died, I heard the expression, "When someone elderly dies, it's like a library burning down" for the first time. I understood that instantly, so much wisdom is lost. It would take me years to realize that this means that I (that you) have a 'library inside'. Trouble is - so many people just never take out a book.

Andrew's purpose, was at first, to simply be Manuela's son. But his purpose is greater now, he is to remind her - and through her others, of the cause of community. She only need but look inwards to see what needs to happen out there. She just needs to take out the books under the subject 'Andrew'.

I know from reading some of the comments here on this blog, that each reader has walked their own path and endured their own struggles. That each person seems willing to reflect internally when pondering externally. This heartens me, this means that we are all willing to grow as people and grow in our capacity to truly care.

I was deeply grateful for Manuela being willing to be so open with me. And being willing to trust me to write this blog when I asked her. But I am equally grateful to those of you, gracious enough to leave any comment at all (I truly truly appreciate comments), but especially those that give me glimpse into your life as well. Your journey in service delivery as a journey in reflection.

Someone said, "An unexamined life is not worth living" and I remind you that for every minute you spend in examining the life of another - you need to spent two examining the life, and motive, and meaning of, you, the examiner. The courage to do this is what will bring us to the edge of exceptional care, the courage to rebel when rebellion is necessary and the courage to stay the course no matter the wind or weather.

laundry list

After I had explained what a resolution was, he said in a voice still full of the thought he'd put into it, "My resolution is that the staff be nicer to me." He didn't get it. He was confusing a resolution with a wish. I'm not one to give up easily (unless we're talking about diets or other attempts to self reform) so I persisted. "Well what could you do to make it so that the staff would be nicer to you?" I asked.

At the time, I thought that a clever question. Remember, if I was meeting with him, he had a problem. I don't go out and meet people with disabilities who aren't a danger to themselves, to others, to the neighbours cat. So, I thought this could bring about some reflection, maybe even - heaven forbid - insight that leads to change.

So he puzzled and puzzled until his puzzler was sore. And he brightened.

"I could make them happy."

Do you feel the roll we are on here. No surprise that I took my masters in counselling, huh? This is good stuff. I truly hope you are taking notes. This is "feet of the master" stuff.

"And how could you make them happy?" I asked. Now I expected him to say something like ... "I could stop breaking the furniture over the staff's cars" or "I could stop terrifying the other residents into catotonia." Either of these would be a good start. But, to be fair to him, the fact that I was even having this conversation meant that he'd already done a good bit of changing. He'd been one of the most difficult people I'd ever worked with. He took tantrumming and non-compliance to a whole new level. He inspired awe.

One of the things that women don't understand about the male body is that when we men feel frightened or threatened our genitals pull into our bodies. This would explain why, for the first view months visiting him, I always had a lump in my throat. He terrified me. But here we were, talking, he'd just made it through the Christmas season with no blood spilled no insurance forms filled out. Then, he answered.

"I could die."

I was shocked and looked immediately to his face - was he joking. No he wasn't. He was just thoughtful. The idea had come to him. There was a way to make the staff happy. He could just stop being.

We'd programmed the violence out of him and somehow he'd got the message that we wanted him gone, disappeared.

But who hasn't had those feelings. Who hasn't wondered if the world would be better off unburdoned by our presence. Weekly through my childhood I wished, not for death, but for non-existance. To just disappear. To make the world brighter, lighter, happier by vanishing.

But there he sat, waiting for me to comment - like I always did - on his idea.

"But, why would that make the staff happy?" OK, not great but he took me by surprise.

"Because I wouldn't be here and then everyone would be happy all the time." Now he was beginning to understand his own words. Now tears were entering his voice and muffling the words he spoke.

"No, no, no, you'd be missed." I meant it and he knew it.

"Why?" He threw the challenge down to me.

Why would he be missed? His tantrums wouldn't, his unreasonableness wouldn't, he inability to be second in line wouldn't. But then I realized. He was much more than those things. Clinically he sounded like a mess - but personally he was pretty cool. He was a person that was written about in two dimensions but lived in three. He couldn't easily be captured by words, filtered down into a psych report, collected into data points. He was flesh and blood, fist and fart, laugh and dance human.

"You be missed because," I picked up some of his laundry out of the basket on the office floor, "who'd wear these."

To my relief, he found that funny. So did I. So we laughed and went on.

This leads me to my resolution. I know it's a few days early, but this one is a no brainer. I make the same resolution every year.

"This year I will see each person I meet as a whole person, not as a bundle of behaviours, a wack of needs, or a jumble of concerns. This year I will see the nose AND the face. This year I will seek the center of the person - not the person at the center."

St. Olaf

They did what they could to hide her. And it almost worked. But once you saw her, she was unmistakeably there. We were watching a television programme entitled "Christmas at St. Olaf's" - a title which makes one of my age think of Rose from the Golden Girls right off. Several choirs were represented, some from Norway, some from the American midwest. They sang beautifully all of them. They look singular, each choir wearing robes that obsured all but faces. This being Norway it was a challenge to see a face that wasn't white, but a couple were there giving some contrast to the look of the choir. She was with the American choir, she'd travelled far.

I didn't even notice that she wasn't there until she was. Sometimes I forget that diversity is more than colour, it's also texture. But when the camera shot the choir from the side you could see two knees popping out of the razor sharp row. Someone was sitting! Interested now, I looked for another view and sure enough you could see her feet dangling about a foot from the ground. She'd been sat on something to bring her height up, so that she was shoulder to shoulder with the women on either side. I was truly glad she was there.

No special attention was given her, she didn't get more television time than the others in the choir, the camera caught her only when it panned the choir - she wasn't made special. Instead, oddly, her difference was eradicated. It would have taken diligent viewing to catch that she was even there. That there was 'one of those' in the choir.

I wonder how she felt about it. Was she pleased just to be a member of something bigger than herself? Did she feel that her difference had been eradicated - erased, for some other more dasterdly reason? It's such a tough call. Sometimes it's good to just fit in, forget. Other times it's good to stick out, noticably.

I wonder about the black viewers of the same programme, did they look for faces like their own, did they sit back and smile when they saw themselves represented in the choir. I'm sure they did. Because it meant something to me to see her there. To be able to root for someone from the home team.

It mattered even more after this Christmas holiday. I use my wheelchair out there in the world but manage at home without it. For the first time I had to have Joe bring the chair in so I could use it when helping make the Christmas cake and to do the Christmas wrapping. I didn't mind so much, though I knew this meant something.

But it clearly doesn't mean that I couldn't sing in a choir and fly to Norway. If I could sing. If I could find Norway on a map. It's important to be reminded, every now and then, what disability DOESN'T mean.

Even though she was hard to find amid the faces. Even though I had to scan the rows of feet to spot the dangly ones. Even though it took the right camera angle to see her knees. It mattered to me.

Sure she gave the choir the gift of ther voice.

But she did something else.

She gave me a gift of her presence.

How cool is it to be able to do that?

Yeah Right

I can see you. Sitting there at your computer reading my posts. Red pen by your side. Shaking your head and clucking at my incorrect use of the comma, my spelling that can be erratic, at my run-on sentences and dangling participles. I'm over 50, I'm lucky I even have a participle to dangle.

Somehow blogs, to me, are excempt from the rules of ordinary publishing. I don't get them proofread first, I don't look up words in dictionaries - I holler for Joe to spell a word for me and if he's out of ear shot I just give it a go. It's just a blog for heaven's sake. If you want literature go to the bookstore.

I just sit here at the computer and think of things I want to write about. I don't think about connecting one post to another or developing themes or having an overall intent. And I don't want to have to go through the pain of having my stuff editted and rewritten -- it's a BLOG for heaven's sake.

So, no, I'm not going to work on my grammar or my spelling or anything else. I'm just going to write what I want to write about subjects that interest me. Primarily that subject is ME, but what the hack!!

Put the red pencil down, and realize that if you could understand it even if you didn't agree with it ... we've done ok as writer and reader. I've always hated when someone corrects my speech when I'm in the middle of a sentence, working with people with disabilities has given me such a different perspective, I figure if they said it and I got it ... first goal accomplished.

Main goal accomplished.

Now let's get on with it.

Foiled

Everyone has excentricities. Don't they? I've got a few. Well, more than a few. And I'm oddly passionate about all of them. One of them came up a few days ago when a friend was visiting the house. "You forgot to put tinsel on the tree," he said.

"We don't put tinsel on the tree," I answered catching Joe out of the corner of my eye frantically signalling our friend to just let it go. He did, but I didn't.

"I don't like tinsel," I said, waiting to be asked. I hate it when people know me well enough to not play into my little games and ploys. The conversation was quickly shifted. I was left with a tirade on the tip of my tongue.

Through the evening I brought the conversation back to the tree. Pointing out several ornaments that we'd purchased under cool or unusual circumstances. For many years Joe and I only bought ornaments when on the road - they had to come from somewhere else. As a result we have an eclectric tree whose beauty is in it's unpredictableness. No two ornaments are alike.

No one bit. I tried a little harder. After talking about the first one we'd bought together on the road, in Boston, I added, "Yep it's sure good that we don't have tinsel." My eyes strayed to see if anyone was going to ask - eyes studiously avoided mine. So,I didn't get a chance to explain why I don't like tinsel. This will explain why I'm here writing this blog, I'm hoping that someone out in blog-land is wondering, this Christmas day: "Just why doesn't Dave like tinsel?"

THANKYOU FOR ASKING

I've always thought, since a wee lad, that tinsel was unneccessary glitter. That it was showy, without substance, caught light but had none of it's own. That it covered up rather than exposed, that it was like a phony grin - cloying.

I don't like tinsel on anything.

I don't like it on personalities. I've met people who I think may be very very cool down there underneath all that artiface, all that pretense.

I don't like it on attitudes. I've hated those moments when I felt that I sparkled only to find later that it was at the expense of someone else.

I don't like it on belief. To me belief is rock solid not foil shiny, I believe what I believe and I believe it deeply - belief is not for display nor show nor approval.

I don't like it on values. "You've got to walk the talk" is a phrase that I've heard once too often but agree with nonetheless - it is way to easy to talk turkey and eat crow.

And therefore it follows that I don't like it on Christmas trees.

Thanks for asking - all this holding back was giving me a cramp.

Being

We picked up Susan because Stephanie had the car and we all drove off to Starbucks in Barrie for a cuppa tea. Settling in at our table Susan and I were off chatting about work stuff and Joe, his voice a little harder than it usually is looked back and forth between us and said, "So, Susan, what are you doing for Christmas this year?" The conversation then steered away from work and on to life as it exists in the everyday world.

Throughout the whole chat Joe seemed to be carefully shepherding the conversation to anything but disability, therapy, workmates. He clearly didn't want to talk about anything but Christmas, presents and food. All subjects that I happen to love too. It was a nice time. Oddly, though, I found myself really relaxing and really enjoying chatting with Susan about everything but ...

When mission comes with work, when purpose comes with rising, when need exceeds time ... it sometimes feels wrong to just sit back and laugh, to talk nonsense, to gossip about family and friends. At one point Susan told a story and just smiled. It was nice to see my friend Susan again, not the woman I work with, worry with and write with - just Susan. I like her and it was nice to remember why we were friends in the first place.

Sometimes, like today, I realize that I forget that I am something more than what I do. That I have interests that have nothing to do with disability, with identity politics, with the world of work.

Sometimes, like today, I realize that I have crowded my personality into a corner and let my purpose take center stage. That I have gone too long without a really good laugh.

Sometimes, like today, I realize that there are simple pleasures - simple things to be contemplated. That making friutcake like we plan to do today is just as important as anything on a yellow sticky or on a 'to do' list.

Joe, in his manner, made sure that for the time we had tea that we were all just old friends being together.

It was nice.

It was to be the start of something big.

Christmas.

Tradition

Wicked. If an old lady can be wicked, Doris was wicked. She had a razor sharp sense of humour, the knowing twinkle in her eyes that only the elderly can have, a fearless way of speaking her mind. She sat behind me in church and would occasionally lean forward as if in prayer and whisper to me - "Is it warm in here or is this sermon just hell?" And then she'd sit back with a saintly smile as if she had just communed with God rather than gossiped with me.

I like people who are a bundle of contradictions. People who's characters are a bit hard to describe. I actually kind of like some of the feedback I get on my lectures because the same lecture can sound like there were two different lecturers. "Too many references to God - too religious" "I found his swearing obscene - I didn't come here to hear words like 'shit'" Good - I'm an equal opportunity offence maker. But people are like that aren't they? People are confusing.

Anyways, back to Doris. She told me once that every Christmas she gave herself a little gift. I loved the idea immediately - buy yourself something for Christmas, ensure yourself that you get at least one gift you actually like. So I asked her what she was getting herself this year. She said, "Oh, I get the same gift every year."

"What would that be?"

"I forgive someone." She said.

When seeing the confusion on my face she continued, "Forgiveness isn't something you give someone else, it's something you give yourself. It means that you get to lay down anger and resentment. The older you get, the less you want to carry. So every year, I forgive someone. I reach out to someone that I've been angry with and just get it over with.

I've been thinking about Doris these last few days. There is someone I've been angry with for years. I don't think much about 'someone' anymore. But it's still there, the anger and bitterness. It's mellowed and melded as part of my personality. And suddenly, a year older now, I don't know if I want to carry this any more. That maybe it's time to lay it down. To admit that maybe I had part in this too ... that it's time to let go.

I shouldn't have needed Doris to teach me this - not this year. In the last year I have learned with certainty that my wheelchair does not disable me. That the only inabilities that matter are the ones of the heart and mind. The incapacity to love when love is needed. The inability to understand when understanding is needed. I know this - but Doris is an old woman and her knowing has the patina of antique wood, it has depth. I'm aging, sure, but my knowing is still has the sparkle of sun on water - it disappears in the face of clouds. But I've decided, I'm going to 'Doris' my Christmas this year.

But honestly, the thought of Doris's traditon slightly frightens me. Oddly, I've defined myself partly in reaction, partly in contrast, what will I be without this in me.

It dawns on me.

Lighter.

And a Partridge in a Pear Tree

Today I'm going shopping for a dildo and a butt plug - on work time, on a work mission. There are times I love working in the area of sexuality. This is one of them. Most of the time working at the respected end of the sex trade is actually more depressing than titilating - working with offenders, working with victims, is interesting and fulfilling but it's mostly sad. But not today - I'm going shopping for a dildo and a butt plug. I'm going to buy things for people to have fun with.

The weird thing is that when I'm actually in the store looking for the purchase, I get kind of shy. I want to yell out "I'M HERE IN A PROFESSIONAL CAPACITY AS A THERAPIST WORKING WITH THOSE WHO ONCE HAD THEIR SEXUALITY REPRESSED - THESE ARE NOT FOR ME!!!" I will glance around and see others glancing back at me. I will feel kind of, I don't know, dirty. A dirty boy. Picking up dirty things. With dirty intentions.

I know exactly what I'm looking for - I've been given instructions. A thumb sized butt plug and a medium sized dildo. Suddenly I realize what these are for and get images in my head that are unwelcome and slightly icky. But that's OK, I'm a professional, man, I do this for a living. I know that the store I'm going to is accessible because I've shopped there before, always in a professional capacity of course. But this is the first time I'm going in to the store in my wheelchair.

Can you see it? A fat guy in a wheelchair looking at dildos and butt plugs. I can just imagine what people will think. An evil grin is creeping over my face, tee hee, tee hee, they are going to be thinking about ME and the dildo and butt plug - images of my fat disabled body, ummm, interacting with the dildo and butt plug will be dancing in their head. Tee hee, tee hee, they will have to think of me as an adult male with an adult male sexuality. They won't like it. I don't care. Tee hee, tee hee. It'll be good for them - here they are in a store shopping for edible panties and leather nipple clamps and they will have their stereotypes challenged. What a blessing my chair is - for others! Tee hee, tee hee.

Sometimes I love my job, I do, I do.

What did you do at work today dear?

I went shopping for a dildo and a butt plug ... and how was your day honey?

JOY

The child was staring at me. I smiled pleasantly back. Mom, grabbed him by the arm and chastized him saying, "Remember, 'there but for the Grace of God ...'" And she was off. I sat stunned. Of course, I'd heard that sentiment before. With shock I realized I'd even said it. But oh my gosh, what a thing to say. Being at the receiving end of the comment left me feeling punched in the gut.

There but for the grace of God go I.

Who would dare to assume that I did not have God's grace. That you do - by virtue of a normal birth and a normal set of legs. That God loves you ... gives His grace to YOU and denies this to me. To others like me. That God approves of the divine right of kings, the divine reign of normalcy, the divine sense that the accident of birth makes one gifted the other graceless.

There but for the grace of God, go I.

I thought of Linda, a beautiful woman with Down Syndrome, a woman who lives a life of prayer and service, a woman who believes with more certainty than anyone I've ever met, a woman who's prayers for my health were answered ... can it be that she has a capacity for grace greater than God's? That she, who can see everyone else through pure eyes, cannot be sheltered under the umbrella of God's grace?

There but for the grace of God, go I.

It's hard not to get angry. Really really angry. When writing this, it's hard to explain the hollow feeling I had inside hearing myself being spoken of in such a manner. It was like someone had reached inside of me a surgically removed my soul. That I rung empty. That I had been dispatched to the edge of hell ... to wait in the lasting forever in darkness and loneliness.

There but for the grace of God, go I.

When Jesus healed the blind man - he forgave him first - then he mixed spittle with dirt and made a poultice to put over the man's eyes. But while he was forgiven, held now blameless, he still was blind. Healing and forgiving are different processes. One can be forgiven and broken, one can be loved and imperfect, one can be graced and disabled. At least I always thought.

There but for the grace of God, go I.

She was an old woman then. My Sunday school teacher. She made me stay after class and she spoke to me. She said that she noticed that I wasn't a very happy child and that I spent way too much time comparing myself to others and finding myself wanting. She said that I had to learn to compare myself only to myself. That I should find what's best in myself and always strive to be that best. Not someone else's best ... my own. That I should only feel that I'm lacking when I don't live up to what's best in me. She explained that God had made me, that I had to honour what God had made and do what God made me to do in the way that God made me to do it. She said that the secret of JOY came when you admired others without envying them. That you learn to judge yourself by the standard that was set for you. That JOY stood for Judge Only Yourself. She said that this little secret that she shared with me (that until now I've never written about before) had guided her. She did not judge others - for that would make her feel either superior or inferior, that she judged only herself for it was only then that she had a chance to be successful and when she wasn't successful - she knew at least where she needed to strive, to try harder. "There but for the grace of God, go I," is a deeply judgemental thing to say, a statement that kills joy, that demands heirarchy, that uses the sharp edge of pity to cut.

There but for the grace of God, go I.

Today is my birthday. I'm going out with friends for dinner and a movie. I might even have a beer. And as I look towards my future, I make this claim, in spite of what others may think, in spite of what others may believe, in spite of my own self doubt ...

There with the grace of God, go I.

In Equality

I heard them before I saw them. The laughter was infectious. There were two laughs, one a high giggle that sounded like it came from really small Christmas bells, the other a series of loud low guffaws punctuated by huge intakes of breath. When I pushed around the corner I saw them. She was sitting on the floor completely covered in cola, ice and popcorn. The spasms caused by laughter would have thrown him out of his chair if he hadn't been blocked in by a huge tray.

She had covered her eyes and was trying not to look at him because each time she did the laughter hit her again. He, himself was slowly soaking in the pop that had pooled around him on the tray but he kept trying to send more popcorn her way by batting at the overturned bag at the edge of the tray. Each time he tried, you could here the "squish" sound made when me moved on the seat of the chair. She said, loud enough for all to hear, "I feel like a pop star." He gave up and put his head back and let out a giant uncontrollable whoop of laughter.

Most around were grinning too. I don't know if anyone saw what happened. I came upon the scene too late but the mishap must have been spectacular because there really was popcorn everywhere. She, getting control of herself, wiped pop that was dripping off her nose and attempted to get up. Her foot couldn't find purpose and she slid back down. The sound of her sneaker sliding was unmistakably like a fart.

This struck them both as funny and they were off again.

A couple of older women walked by shaking their head. I think they were looking at the scene like mothers - incapable of seeing anything but a mess that needed cleaning up. Another chore in a lifetime of chores.

But I couldn't see the mess because for a second, I was awed. You see it awes me that in joy there is no heirarchy.

There is no master, no slave, no rich, no poor, there is only joy.

Laughter creates equals, if only in and for the moment.

Joy To The World -- is a wish for a world lived in equality and in equity.

When I came out of the movie, they were long gone. The only sign of them that remained was a solitary piece of popcorn that had wedged under a display. A little reminder that popcorn dumped, that laughter spilled and that two people spent a few moments as equals on holy ground.

Toes

"These have got to come off," the vet said pointing to Eric's toes. The upper toe on the back foot, the one that doesn't touch ground (does it have a name?) wasn't like it's typically supposed to be. It wasn't attached to anything and sort of hung there like a bit of mud caught in fur. When asked why it needed to come off, the vet was dismissive of the question and just reasserted that it needed to be removed. He described the surgury, the fact that Eric would have to be put under and then would have several weeks of healing after the removal took place.

"But then he wouldn't have his back toes," I said, not understanding.

"But he'd be rid of these," the vet responded pointing again at the dangling digits.

"But that's serious surgery," I said.

"Have you looked at these," the vet responded pointing at the toes under discussion.

Eric stood there, shivering like he always did in the vets office. He'd only been with us a few days. He was getting used to us, trying to trust us after the abuse he'd suffered at the hands of others.

"Can you explain to me the benefits, to Eric, in removing the back toes?" I asked again, trying my "at work advocate" voice.

The vet sighed and said, "The simple fact is, Mr. Hingsburger, the toes are unsightly. They dangle there and serve no purpose. I suppose that the purpose of the operation would be cosmetic."

Cosmetic surgery for my dog!! The vet could see the shock on my face and tried to placate me, "People may make fun of him." And that's going to hurt my dog's feelings?

"He'd been beaten for God's sake. We brought him in because he'd been beaten and we're discussing cosmetic surgery on his TOES!?!" I was upset and the vet knew it. The subject was dropped. Eric lived for 16 years with dangly toes and never seemed to notice. No one ever teased him because of his back toes, and they'd have had to deal with me if they did.

We switched vets, obviously, and every vet we went to see we began by being clear ... the toes are not up for discussion.

My dog was not a designer dog - he was one of a kind. He had God's fingerprints all over him and his toes. So his feet were a little different from the ordinary - so was his heart. I'd give anything to have him and his toes back, for just five minutes today because I've been missing him something awful.

I looked in his eyes and his toes became beautiful. That's how it's supposed to work, isn't it?

Ramped

What a nice guy. We got together with Mike, Merissa and Ruby yesterday for a movie and then were heading off to have lunch and exchange Christmas gifts. I had just bought tickets to the movie and a young man appeared at my elbow. He was the manager of the theatre and was quickly explaining to me that the elevator was broken down and we'd have to use the service elevator at the back of the building. Mike, Merrissa and the baby headed up the escalator and Joe and I along with the manager headed out doors and around the building.

As we walked the manager explained that the elevator had been down for several days as they were waiting for a part. He said that both he and the Paramount were distressed at the problems this was causing for disabled patrons. He didn't like the idea that people with disabilities had to use an entrance so far away and, ultimately so unpleasant - we passed several trash bins and the smell of the elevator was a tad strong.

What really struck me about all this was that the manner of this guy was so respectful. He 'got' that people with disabilities shouldn't have to use back entrances and be separated from their group. I assured him that this was no big deal, that we were able to get in to the theatre and that we appreciated his concern. Then, that all over, we all just chatted as we travelled the long distance around the block and to the back. Part of me wondered if he had a family member or a friend with a disability. He was so casual with his interactions. No smarmy helpfulness or condesending chit chat. Just a normal converstation.

Accessibility isn't just a ramp, it's an attitude. It's a way of being. Some buildings need to be restructured in the same way that some personalities need to be renovated. Can you ramp a tone of voice? Can you put a gradual incline on a glance? Yeah, you can. It's possible to be helpful without being hurtful. It's possible to be giving a hand up without putting someone down. It's possible to smile without pity and to hold a door without holding judgement. (That's for you Frances.)

Problem with all this is that sometimes I know, in my work with people with intellectual disabilities is that sometimes my own attitude is a barrier. That I have to remember, remember, remember, that when helping is my job that pity isn't my product. That it's possible to interact with care but without discrimination.

When the movie was over the manager appeared to take us back downstairs and asked if we enjoyed the movie. We did. But in fact what I really enjoyed was meeting someone who seemed to know instinctively how to simply BE accessible.

Timmy

I first noticed last year. Christmas time returning from a road trip, I was shopping in the airport. I'd been in the wheelchair for about a month. Joe is not the shopper I am and stayed at the breakfast place to have another tea. Something caught my eye in a store that had narrow aisles. Being fat has given me the ability to accurately determine fit, I figured I could - if careful - get in and out of the store without crashing over a display.

Finding myself now in the store and with a purchase in my hand, I couldn't push myself because my hands were full. I caught the eye of a business suited guy who was leaving the till. "Could you put this on the counter for me?" I asked him pleasantly. He became very flustered. "Yeah, ummm, sure, you want me to push you?" He, skinny little gaffer, almost knocked over displays getting to me. I told him that all I needed was for him to put the item on the counter. He did so grinning almost maniacly, then rushed out of the store.

His whole body screamed pleasure, like he wanted to shout - I HELPED A CRIPPLE. I'd made his Christmas. It was like in the single act of helping me he had absolved himself of every sin, an act of kindness was like an act of contrition. That was the first time, of many many times since, that I thought of Tiny Tim's feeling that it was good for others to look upon his disability and be reminded "upon this Christmas day of He whom made the lame walk and the blind man see." God, I hate that kid. I hate that view of disability. (We're here to remind YOU about how lucky YOU are that YOU aren't us. Trust me MY disability is about ME not you.)

Everywhere I've been this week, people have been smiling at me. A sad simpering smile. Please! Mostly it strikes me funny. Sometimes it's annoying. Others intrusive. It's like I don't always want to be reminded about how visible I've become.

I think that what bothers me is that people are so free to give sympathy, pity without translating those emotions into into jobs, respect, neighbourliness. That businessman fumbling around to help me would do better ensuring that his companies hiring policy ensured access to jobs for people with disabilities. The woman who held the door for me yesterday (like she'd never need to give to charity again because she'd HELPED A CRIPPLE TODAY) would do better if she ensured that people with disabilities were properly welcomed in her local school or community.

I know, I know, I'm carping. Here I am Titanic Tim bitching aobut people smiling at me for heaven's sake.

Oh, well, then ... "God bless us, every one."

giving up getting on

I almost made it. All the way through. But I didn't. Last forkfull of breakfast beans nears my gob and one lonely little stray bean leaps off landing right on my shirt. Now, I'm a dropper, spiller, loser, I do all those things. But today I kinda wanted to travel home looking like a successful lecturer rather than an inmate from a home who forgot his bib whilst having breakfast. But that's not the life I live.

Joe, who used to fuss over my little accidents, now just looks up, shakes his head and moves on. He's given up trying to tame the little disasters and just rides with them. "Damn, I dropped a bean." I said to him while picking it up to send it on it's way. Then I brightly said, "Almost made it through breakfast this time." Joe was tired and said, "Well, now that you mention it, the beans trail kind of matches the jam trail on the other side."

"Oh."

Two days ago we were in Liverpool, we stopped at ASDA for tea and to pick up a few groceries. There was a guy there with cerebral palsy having lunch with his care provider. They had chicken and ribs and he got it all over himself. He didn't even notice. Jerky movements ... jerk sauce on your shirt ... it matches. He, like me, had given up. Some wear jewelery, others wear food. He doesn't care, and really, I don't much either.

The flight home was 8 hours of drearyness - of all the movies in the world, "My Super Ex Girlfriend" wasn't one that was on my list of must sees ... so I simply read, spilled water, dropped the newspaper, lost my glasses - found them again, discovered a hitherto unnoticed stray bean in the fold of my shirt - ate said bean, smudged my glasses and tried to find a clean area of my shirt to wipe them. I was just having a Dave Hingsburger day.

We landed. Got the luggage. Got the car. Got tense with each other ... Joe is a real handful some times ... then headed home.

Joe tried three times to tell me about listening to one of his favourite caroles on the airplane, he was so tired that his mouth couldn't get the words out ... "blick ... blick ... you know blick ..."

"Bleak midwinter?" I asked. He nodded and then we both started to laugh so hard that I spilled my green tea all over the armrest.

Here's to the neat ones ... and here's to the messy rest of us.

the box

I know they meant to be nice, but it bugged me anyways. After one of my lectures here in the UK, I was chatting with someone who thanked me by saying, "thanks for helping me think outside the box". I really really don't like that expression. This morning I couldn't sleep what with the anticipation of going home tomorrow. I thought about that expression and tried to figure out why I have always reacted badly when hearing it. It didn't just grate on me, it disturbed me. And it was everywhere, I used to have to see it every morning on the way to work in Toronto - it graced a billboard with a picture of a coffin under the slogan 'think outside the box' that advertised a local cemetary. Ugh! A silly expression shouldn't have that power.

In the dark, I decided that it bothered be because I don't believe that there is a box to think outside of ... that the 'box' is just a fence that the fearful put around the ordinary. The mere idea of the 'box' is an insult to creativity, to the fanciful and the fantastic. More, I think that the 'box' has created insiders and outsiders ... that the box is the problem in the first place. I don't think outside the 'box' ... partly because I've never really been in a box to think outside of (if you followed that sentence then bless you for trying).

I think that disability, no greater than disability, that difference itself is like a genetic tsunami ... a little reminder from mother nature ... that we are not in control. I think one person with cerebral palsy simply kicks the shit out of the idea of any box ... one person with Down Syndrome takes a pair of sissors and cuts a hole in the cardboard to let the ordinary escape ... Daily, I'm asked to confront the tyranny of the 'box' of the captive ordinary.

Don't think outside the box, eliminate the box, see it all. This is not thinking big, it's thinking free.

I tremble everytime some geneticist finds another gene that will allow scientists and box builders to eliminate another other. I thank God for having the idea of difference and the belief in our capacity to experience with depth and range. I fear our desire to trim God's power using science to exorcise difference and disability ... to make only what fits in the 'box'.

Box cereal ... free people.

spirit

We are in a rest stop on the M5 heading from Plymouth to Liverpool, the last lecture is done, the last consultation is over. It was a nice way to finish. I'd sat in a room with 8 or so people and did a discussion/consultation. They were a wonderful group whose care for those in care was palpable. Their questions were all regarding efforts to understand and desire to do better. It cheers the heart to have time spent like this.

We made a quick stop on the motorway to get something to eat and grab a bottle of water. As I entered a quick mart called reFresh a woman was sitting on the floor decorating a small Christmas tree and talking to a few people standing chatting around the cash. They were all talking about how Christmas was for children (an idea I simply can't understand) and the woman on the floor said that her son always made the season special for her. They fell silent as she spoke. She looked up from her task to their stone silent faces, "Well he does," she said.

One of them asked if her son was any better. "He has autism," she said, "he's not sick, he doesn't need to get better." Her voice was stern, not bitter. "And what I said is true, he makes the season for me. He loves Christmas. He wants me to love Christmas. At first I thought I was jolly for him, now I'm jolly because of him."

They nodded, not knowing what to say but clearly not believing her. She shook her head and went back to work.

The world is divided in two.

There are those who get it and those who don't.

the Goose

Friday hit hard. After giving 15 lectures in 12 cities, I was just plain exhausted. Joe and I headed for Manchester for a weekend in Manchester. I got up on Saturday with no energy and dreading the next days drive of nearly 300 miles. We made plans, then said, 'nah' and just stayed in the room. At around three o'clock I announced to Joe that we had to go to the goose. Even if it was for just one beer, we had to go.

We discovered Paddy's Goose a number of years ago and now make it a Manchester must. It's kind of like the Rovers Return on acid. (Only Corination Street fans will get that!) We've never been over here without going over there. Tradition! We got me into the wheelchair and walked two blocks and then realized it was uphill for the next three or four blocks. I was tired but determined. I got out of the chair, Joe pushed the chair, I held on to his shoulder for balance, and we slowly walked to the Goose.

I was shaky but proud on arrival. I plonked down in my wheelchair and Joe went to get us each a beer. It was the afternoon so Paddy wasn't at her height. This is a neighbourhood bar. Some would call it a 'gay bar' because gay people go there. But using that as a descriptor you'd also have to call it a cripple bar ... because I've never gone to the Goose and been the only one with a disability there ... or you'd have to call it a prostitute bar because a few of those wander through ... or a shoppers bar because many stop in for a beer after shopping downtown ... or a couples bar because young couples pop in to people watch and relax ... or a drag bar because there are often men in eyepopping clothing.

Are you getting my drift, I like it because it manages to welcome pretty much anyone who's willing to behave. The bouncer outside, who helped us in with the chair, is there to remind everyone that you can go in on your own but you will be 'helped out' if you behave disrespectfully or aggressively.

The sign on the bar says 'The Famous Paddy's Goose'. And it is in its own way. We once chatted with a flight attendant who told us about some of her fun nights in the Goose. Once a year, the Goose gets lots of visits from people with intellectual disabilities as the Paradigm conference happens just down the street. They don't seem to notice that the band that collects diversity together stretches a little wider during those days.

But it's two beer and I'm done. I'm tired and the smoke is bothering me. But I was there. For two beer, I sat amongst people who moved aside for the chair, but without noticing it, who spoke to me to find out where I'm from - not how much I weigh, who were interested in the deeper differences insider me not the shallow ones you can see.

I went to Manchester and all I got was a couple beer at the Goose. And it was enough.

Ruby's Eyes

Last night we arrived at yet another hotel, this time the Palace in Manchester where we will spend the weekend. We found our way to our room and just marvelled for a few minutes. The room was beautiful. With ceilings tall enough for a beanstalk and a huge bed with a mattress that you where the princess wouldn't have felt a peach let alone a pea. But the crowning glory is the bathroom. It makes accessible beautiful. Most hotel rooms fitted for the disabled look like they were transported from a hospital ward. Not this one. The bars are jet black the railings made of brushed steel. It's gob-smacking fabulous.

So we went to the bar downstairs for a drink. We found ourselves suddenly surrounded by hundreds of Christmas partiers. They were with some kind of firm that seems to only employ white middle class people. The women were dressed in Marks and Spencer frippery. The men in tuxes, ties ... the bravest wearing socks with a splash of colour. It was like the lobby of a cloning factory. Very little difference. And what was odd was that they didn't seem bored by their sameness, they seemed to revel in it. Joe and I sat at a table off to the side and there was almost a current of disapproval that ran through the group, me fat in a wheelchair, Joe with me fat in a wheelchair. Eyes were averted.

Eyes.

When Ruby Grace was born, I held her just a few days after she entered the world. She smelled of baby, of fresh life. Mostly she just slept. I think I have the kind of body that babies in particular like. Soft, warm, safe. She snuggled into me and just slept. After a sound sleep she stirred slightly and then, wonderously, she openned her eyes. They were like alien eyes ... they looked otherworldly, like she was seeing earth for the first time.

I pray that Ruby's eyes learn to love seeing difference. That she doesn't end up liking only one colour of rose, one flavour of tea, one scent of perfume. I hope that when she attends a party like the one last night that she fights a yawn and delights when it's over and she can return to a fantastical world of diversity, odd beauty and sharp spices.

There is so much for her to see, so much to taste, so much to experience. I hope that the boundaries of her life are not defined by a desire for sameness ... I hope that she seeks out polar opposites ... I hope she seeks for difference both in her heart and in the hearts of others. I hope she sees ... really sees the people around her ... that she sees, even once glimpses, the world that God made.

Manchester Conference

It's 5:10, Tuesday night, I'm about to begin my keynote lecture for the Paradigm conference. Keynotes always make me nervous, speaking after 3:30 is the worst block of time for me, waiting all day to talk is torture. Public speaking, though I'm told is a talent I have, is not something that rests easy with me. I am a shy person at heart and the idea of all those people looking at me sometimes terrifies me. But I do it, there are things I want to say, things I think need to be said, and I intend to say them. Caving into fear, I learned early on, leads to a lifetime of darkness and hiding. No more of that for me. So I take a little pink pill that like Alice makes me 10 feet tall.

But I've been to the Paradigm conference a number of times now, keynoted most of the times that I've been there. First in Birmingham and now in it's new home in Manchester. I've come to look forward to this conference. I look forward to the atmosphere it creates, there is a radicalism in the very structure of what happens at the conference. There is a presumption of equality of all and an eagerness to hear the voices of the attendees with disabilities.

Borrowing heavily from scripture here, 'whenever two or more of you are gathered in the name of jusitice, equality, and fair play' a joyous spirit will visit with you. And it's true. There is a joy and an energy that goes without defining. It's like you get a glimpse of what we could be like. It would be to expansive to say that one can now imagine the world an inclusive place, but it would be fair to say that it is possible to get a sense of what proper service to people with disabilities could look like.

There are a thousand meaningless incidents that add up to capital M meaning. Sitting at the booktable a woman with Down Syndrome, dressed in a lovely dark suit, wanders by lost. She had obviously turned the wrong turn and headed down to the coffee area instead of to where the conference rooms were. She stopped, looked confused, and then someone asked where she was going, she was given directions, said thankyou and went on her way. No big deal. Yet a very big deal. There was no staff rushing after her, trying to find her, trying to account for her every minute, she had had the dignity of being lost and the right to depend on the kindness of a stranger who owed her nothing but regular kindness and who did not receive a salary for pointing the way.

For all these reasons, I worry about my keyonte at this conference. I always want to have a message that matters and I fiddle with it until it is done.

Well that was two days ago and it's over. How did it go. I'll never really know. But what I do know, that when you meet excellence you want to fall in line. For not only did I feel the challenge, I think everyone there did.

There were two or more of us gathered there ... and the spirit did come.

Mistake

He annoyed me. Often. Wandering around the conference using social skills that needed way more than fine tuning. I could see that others felt the same way. But here we were in a session together. It sounded like fun in the description. It was to be for men and we were to adapt football chants and slogans to the ideas of inclusion and freedom. It was fun!

When we were thinking up ideas, this little man with a disability began to sing. He sang a song about longing. About wanting to have a friend. Someone to go out with. Someone to spend time with. Someone to take the dreadful loneliness away. He sang about being sad, being alone, being lonely. He sang about wanting a life that was both free and full. When he finished we were all stunned. He loved the applause. He felt part of the group, but he knew he was still alone.

Afterwards I was angry at myself for being annoyed with him. Desperately lonely people do desperately lonely things.

We need to be clear eyed about both the goal and the reality. If people want lives full of friendships they need to learn some hard lessons about respect and reciprocity and roles. I should have been responsible when he annoyed me by saying, 'I know that you are trying to have a conversation but you are maknig me uncomfortable - why not try a new way to start.' I should have gently given him skills. But I didn't. I didn't think it was my place. But if not me, who?

Loneliness defined my youth. It bore down on me feeling like heaven was grinding me down like a cigarette into the pavement. No one should feel that way.

I want to have the opportunity over again, to have tried not to 'be his friend' because that would have been false and patronizing, but to have given him an experience to learn, to have reacted to him in a way that was both real an educational.

Why does kindness, in the moment, look like pity from a distance.

Just Stop It

She was trembling angry as she spoke, during my lecture, about a woman with a disability who liked to carry a furry bunny. The bunny had been named long ago and was a constant companion. Someone, someone superior, wanted to take the bunny away from her. The bunny was 'age inappropriate', her love for it wasn't 'normal'. God save us from those who know better. God save us from the self righteous. God save us from the tyranny of the norm.

Why would any sane person set out to hurt a woman with a disability. To steal from her a prized possession. To think that they had a RIGHT to an opinion on a FRIGGING bunny!! This kind of thing drives me crazy. Can you imagine going out to a pub after work and being asked, 'So what happened at work today?' Now imagine answering, 'I took a bunny away from a disabled woman.' That's something to be proud of ... outright cruelty.

Why are some of us so vigourous to ensure that disabled people don't 'act disabled' is there an inherent disphobia in this kind of thinking? So she carries a bunny. So people stare at her. Isn't the real issue the fact that others who judge her and her bunny have forgotten to take the spike out of their own eye first?

Here's to freedom to hug stuffed rabbits. Here's to freedom to nuzzle fake fur. Here's simply to freedom.

Newcastle Brown

Startled is the only word to describe my reaction. It was a bold move, I'll grant you that. We were nearing the end of two days of lectures in Newcastle. I'd asked for questions. A young guy, maybe mid twenties, put his hand up and I called on him. He asked a question from the day before - and I'll admit it now, the question shook me a little bit.

Let me explain. Thed day before I had spoken briefly about self esteem and disability. I told the audience about working on the radio documentary 'Life, Death, and Disability' for CBC radio. In the intervfiews with disability leaders, I asked the question, 'If you could take a pill and wake up tomorrow without a disability, would you take the pill?' I then recount how all those interviewed said 'NO' and gave their reasons why.

I'd been doing this lecture a long time, long before I sat in a wheelchair to do it, so I may be forgiven for having a bit of 'rote' entering into the process. This guy jerked me out of that rut by asking, 'What about you, do you ever wish you weren't in that chair, that you weren't disabled now?'

Oddly, for me, who believes that I'm fat just to make navel gazing easier, I'd not really thought about that, I'd not asked myself that question. I answered him quickly, glibly, 'No, I don't wish to be different than I am now.' He looked at me a bit disbelieving, partly, I think, because my answer was shallow.

But I've had the weekend to think. And while trotting about the Metro Center, meeting Nigel (kid in tow) for lunch - might I add that he was not in sartorial splendor himself - I thought about the question. There are quick and funny answers ... 'It's not as if I had to give up hiking and rock climbing.' That wasn't good enough, I wanted to really know. I do feel badly sometimes when we are going long distances and Joe has to push me. I do find that inaccessibility can be annoying.

But the question is about me. True as a boy I wished to be different than I was - but what boy doesn't. But I grew into me and I continue to do so. I do not wish to offend my maker by complaining about the quality of His craftmanship. I do not wish to tread, or roll, on a path other than the one set in front of me.

I was afraid, at first, that my answer in the workshop had the stink of BS about it, that it was my own Newcastle Brown. But no, I told the truth.

I'd not take the pill.

Yellow

You had to look at him. Incredibly handsome, obviously rich. His clothing alone was worthy of note. Typically I find that business suits obscure the man - a uniform to make men anonymous, equal. Not in this case, I don't know much about clothing. I was once introduced by Nigel Devine to an audience thusly, 'He hasn't let success go to his clothes.' Foret the clothes, he wore them beautifully.

We were on a train that travelled the short distances between concourses in an airport, though I suppose to call it a train is a bit like calling a bicycle 'transportation.' Now don't go thinking of me as some pathetic gawker. We all stole glances at him. It was a bit like being in a room with Brad Pitt or being on the freeway passing an accident, you had to look.

I suppose that since we were looking at him, we never saw them. And the shock rippled through the car when we did. The automated voice had told us that we were approaching the baggage terminal and everyone waqs momentarily distracted, checking we had everything as we prepared to disembark.

With a grace that comes from years of practice, the fine young gentleman reached down and pulled up two crutches. I'm not talking the 'I broke my leg skiing' type of wooden contraptions. I'm talking the real 'Oh, my, God, he's a gimp' crutches. But I'd never seen the like of them. His suit was a dark blue so the hard yolk yellow arm braces and hand holds stood in stark contrast. The metal was cobalt blue and shone as if polished for military duty.

As the train breaked, he swung himself up and into the crutches, tall, lean, proud. His crutches screamed defiance. This was no closet cripple. This was a disabled man. There was no mistaking that fact. FDR hid his disability fearing public hostility. This guy invited you to notice both who he was and what he was.

Ahhh, the days of disability pride are nigh upon us.

Fries With That?

'Look at that!' Disgust dripped off the vowels of my sentence. Joe glanced over, and though he was horrified, he wasn't, like me, outraged. We are sitting in a pub having dinner after a three hour drive from Bournemouth to Sheffield. There is a man. A wee skinny man. Eating pizza with a side of fries. Not only that, he's taking a forkfull of fries, then using the fork to pick up a cut piece of pizza and then shovelling it into his gob. When he stops to take a breath, he picks up his cigarette and beer and washes the smoke down with the alchohol. I hate him. Truely down deep hate him. There is a special place in hell for skinny people who eat fries with pizza.

My food arrives and I realize that I don't actually hate him. I envy him. Skinny bastard - but he smiles nicely at the waiter and speaks politely to those around him. He laughes easily and when I try to get by in my chair he quickly moves aside with a 'hello mate'. OK, I don't hate him. I resent him.

Hate is a strong word, some say it's an unjustifyable feeling. I don't know. Two days ago, again working for the Bournemouth Forum, I was at a conference in Exeter for police and other lawyery kind of people. The conference was about hate crimes against people with disablities. We heard from self advocates, we heard from professionals, we heard stories of abuse, teasing, name-calling and violence.

And I hated. I don't understand someone who could take advantage of people due to their vulnerability. I don't understand how one lives with oneself after that kind of action. So I hate hate crime. Eat pizza with french fries if you will but treat people decently. Hell eat ice cream with pizza as long as you don't hurt or humiliate others.

Much of those stories I heard that day still haunt me. But I will always remember the power that people had in getting up and telling them, in asking for justice, in wanting respect in the judicial system, in wanting police to take crimes against people with disabilities seriously. So, I'll leave the pizza with the side of fries and opt for respect with a side of justice. Fewer calories but a lot more satisfying.

Make Me A Day

I'm buzzing. Absolutely buzzing. Today I did a workshop for 90 people with intellectual disabilities in Bournemouth. I sat at the front as various small groups and individuals arrived. The organizers from the Bournemouth Forum were busy making sure that everything was ready and I sat quietly going over my notes and 'psyching up' for the day. I have rarely done a workshop for so many people with disabilities. As they took their seats I became intimidated.

These were people who had walked such a different path than I had. They came, some on their own, some in the company of care providers, they came. But they came from a different land. A different world. They sat alone and in groups. Some chatted but most sat quiet, waiting, as they have waited all their lives for justice to arrive. What did I have to say to these people? Why should they listen to me? My heart began to race and, panic rising, I located all the exits.

Finally the room was full. I announced that we would start in a couple of minutes. Some looked at me expectantly. Some didn't look up. Some rocked. Some paced. Some quitely muttered. There was nothing to do but start.

We began, like I always do, with the 'NO rap' where people shout out 'yes' or 'no' to various statements. The very first 'no' shook the rafters. They were here to learn, to participate and by the heavens, they did. We sailed together, they and I, through the day.

At one point, in my favourite role play, a single woman gets up and shouts 'no' to Joe who stands at the back of the room when he says 'hey, babe, you want a ride'. Slowly, more and more women get up, finally women, men, staff, self advocates, are up and shouting 'no' 'no' 'NO' 'NO!!!'. I had turned on the tap. They didn't stop they shouted 'no' as if they were shouting through their own histories at everyone who had ever treated them with disrespect. My heart thundered in my chest as I imagined disphobic bigots everywhere shivering as if someone walked over their prejudice.

By the end of the day, I had a glimpse of the strength of the PEOPLE who have disabilities. This was not a gathering, this was a community, a people. What untapped potential we have for revolution. What incredible resource for change. I know this because they reached inside of me and erased, for a few hours, the boundaries of my expectations of just what and just who disabled people are and just what and just who people with disabilities could become.

Choice

He sat there thinking throughout my whole presentation. He was an elderly man who nodded, only occasionally, took notes but seldomly. Sometimes he closed his eyes while I talked and I thought he was sleeping. Other times he looked at me with intensity. On a break he came up and told me that he had, years ago, worked in an institution in London that was a source of such painful memories for him. He said that the people there were treated as little more than bothersome animals. Things to be fed. Things to be washed. He said that his faith had bade him to work with the disenfranchised but that though what he did gave him joy, what he saw gave him pain. He said that some of my lecture that day had reminded him of things that he wished to forget but people he wished to remember.

When the day was over he came along and shook my hand. He said something to me that I will always remember as he described his present job of being a teacher to kids with severe learning disabilities ... this is what he said to me.

I have been given the power to suppress or the power to let grow ... it is my constant prayer that I always make the right choice.

the voyage

My hair, or what's left of it, waved in the breeze. His words flew out of him, he talked of everything. His friend sat silent buttering bread. In minutes I learned that he didn't like Indian food, though he didn't know why, that he wouldn't be singing in the choir because while he believed that Jesus was borne he wasn't sure about him rising again at Easter and if you don't believe one you can't believe the other, that he would probably be staying at the school for the holidays. His friend's parents were clearly tired of the chatter. I found it charming, probably because it still strikes me as cute that a kid has a British accent.

Mom and Dad kept directing questions to their son, ignoring the constant chatter from the other boy. But at each question the chattering child leapt in to provide the answer - along with colour commentary. He reminded me so much of my dog Eric as a puppy. Eric couldn't stand Fred, the older dog, getting attention so if you tried to pet Freddie, Eric would fit himself in between and use his muzzle to push your hand away from Fred and toward himself. There was a desperation to the behaviour that was both cute and pathetic at the same time. This kid was like that, 'pay attention to me me me me' seemed to be the message in every word he spoke.

Then it came out, the kid was cool about his disabilities. He said that he was diagnosed as dyslexic with 'a touch of autism' he said. A joke needed to be made and he made it, 'As an autistic I want the world to be a particular way, as a dyslexic it never can be ... so in the confusion I'm kind of normal.' I almost spit out my veggie burger and started to laugh. They all looked at the table and then decided that I was laughing at something Joe had said and they returned attention to their own table.

What a cool kid, I thought. But his parents didn't, he was visiting his friend for the weekend because he didn't go home much. They must have been clear about their disappointment in him because he said, straight up with no hint of emotion, 'My parents don't bring me home much because my disabilities bother them.' His friends parent exchanged glances that said, 'Boy do we get that.'

Whoa, I don't get it at all. He was cute, bright, articulate, what's to be ashamed of. Hell, if he was hairy faced and six legged, if he's your kid, you love him - that's the deal. It's in the contract. Loving a kid with a disability doesn't make you special, it makes you a parent.

His parents are sailing to India for the holidays, he's not welcome on the voyage. Like the unicorn, left behind by the Noah and clan, the trip will be less beautiful because he's not there. Today, as we drove through London looking for our hotel, we saw an elderly mom with a 30ish man with Down Syndrome, they were laughing as they walked together. I'm betting that she didn't expect to have him along on the trip and I'll bet his company makes the world brighter for her.

The chatter went on, non-stop, until the food arrived. He slathered catsup onto his steak and silenced as he ate. The silence was deafening. His presence was dimmed for a moment. 'What a light' he casts, I thought.

Well here's to the dyslexic autistic in all of us. I want the world to be a particular way, and I can't make it so. Though it makes me normal, it also - sometimes - makes me wish for an extra unicorn or two in the crowd.

Touch Down

Touching down in England was so welcome. The flight was long, the airplane hot, the seats cramped. Getting out of the airplane and into my chair I was ready to get going. But I couldn't there weren't enough people to assist with those of us in wheelchairs and I had to wait as they tried to find someone to push me to customs - a walk of about 3 miles. I had to raise a bit of a fuss, something I'm thankfully good at. From customs it was to the car rental place and from there to the hotel. By the time it was all done, I was ready for a beer and a rest.

I came to the computer room to check emails and double check the blog, I had to write an email that I didn't want to write but had to get done. While I was doing that Joe was getting the luggage up to the room. He came and got me from the computer and we went to the bar. We have an English cell phone to use over here and we turned it on to reprogramme the time and date.

To our surprise the phone bleeped that there were messages. Four of them in fact. I called and found that there were no voice messages, then checked to find that the messages were all text. It took a while because I hadn't used the phone in a long time and couldn't figure out how to get messages off the phone. Finally I found the right button and retreived them.

Three were, 'Hi, Dave' and the fourth was a much longer message. Clearly Neil had tried four different times to text me. His message was a simple message of welcome and friendship. Neil and I met, the first time I think, at the Paradigm conference and then again in his home town as I did a conference for self advocates and a separate one for staff. He is a self advocate speaker himself and is rightly proud of what he had done and acheived.

But one of the things that Niel had acheived is the ability to think of others - to put himself out for someone else - he has the gift of welcome. While I work for Paradigm when I come to England, my purpose is Neil. It was nice to have my voice and my work acknowledged by a simple, 'welcome back'.

After a long day, I finally, smiled.

Shut Up and Smile

Sometimes I'm a hypocrite. I was appauled by the fact that American's seemed to give up the freedom of speech and freedom of thought the moment war was declared. As a Canadian one of the many things I like about American culture is their whole hearted dissent. Pray God, give me some anger in the disability movement in Canada like they have in the States! ADAPT just seems to be a cool organization. Not Dead Yet ... awesome. But after 9/11 there seemed to be uproar for the tiniest bit of criticism of the American Way. My God, they were upset at the Dixie Chicks!

So, I went to see Shut Up and Sing partly because I really enjoy the debate over free speech. Partly because I knew that the movie would be preaching to my prejudices and who doesn't like that? But as I began to think more deeply about it all, I realized that I work in a system that really doesn't encourage people to speak freely and openly dissent.

Good heaven's today at work something weird happened. I went into the kitchen with my frozen lunch and pulled several frozen bean burrittos out and put them on a plate. All the while I was talking with a woman with a disability who was sitting having her lunch. I then turned to see that the microwave was gone. Yep, gone. I looked at her and she said, "It's broken and is being repaired." I was annoyed, "Why didn't you tell me when you saw me opening these," I said pointing to the burrittos. She was flustered and started stammering. She was AFRAID!!!!! Afraid of speaking up and telling me that I was off track. She'd learned her place and was shocked that I had expected her to address me as an equal. That ~I expected her to tell me that I was making a mistake.

Ask almost any direct care staff about working with people with intellectual disabilities and what you'll hear is, "It so hard to get a straight answer out of Jason because he just looks at you and tries to figure out what you want to hear." People with disabilities have been conditioned through a lifetime of being 'wrong' that there is always a 'right' answer to every question and that staff, or parent, or teacher know what that answer is.

I remember asking a guy named Wayne what he really wanted. I was frustrated and I know that was in my tone. Well, Wayne had had enough. He turned to me and said, "You want to know what I want ...." and then he told me. He told me about his life in the institution, he told me about his life in the community, he talked about a lifetime of being disrespected. He was angry and the words poured out of him.

This wasn't Wayne. Wayne smiled all the time. That's all the time. He looked like a skinny, white, smiling Buddah. He nodded when you spoke to him. He agreed with everything. He was happy. All the time happy.

And by all that is holy, I bought it. I enjoyed being with Wayne and knew, proof positive, that he enjoyed being with me. But Wayne had learned to Shut Up and Smile. He engaged in "Yes, Master" behaviour. He knew who had power and he knew how to bend to the will of the other.

This is what we've done. What we've created. It's time for some freedom of speech, some freedom of thought and time for wholesale dissent. I don't want to work for people who are the pale imitation of what they think I want. I want people in vibrant colours and bold stripes.

I had known Wayne as an outline. That day I knew him differently. That day I met him. That day he became a self advocate.

Enough

I had a tantrum today. I did. It felt good. In the Toronto Star today (Nov. 17) there was a several page article that was purportedly about deinstitutionalization and how it will damage the lives of those who need to be kept in care. The article was nothing more than propoganda - it described people with disabilities with lists of negative adjectives designed to make different into deviant. An interesting literary alchemy. I sat down to write a letter to the editor and I was going to be all calm and address, issue by issue, some of what was said.

Then I thought.

I'm never, ever, ever, ever again going to explain to anyone that people with disabilities deserve to live at home in the community. Some truths are self evident, that's one of them.

Then I realized.

I'm angry. I'm really, really, really angry. It's not OK that journalists write stories about people with disabilities without talking to them. The reporter never talked to one person, not one person, with a disability. She talked to parents and to 'friends' and to non-disabled talking heads from the community living movement, and I'm sure they thought it was balanced.

Then I fumed.

To hell with it. I'm not going to write a polite letter. I'm upset. They are talking about peoples lives. They are talking to future neighbours who will be upset that these deviant others are in their back yard. They are talking to people who've never smelled an institution. I sat down and banged on the keyboard. I called the reporter a bigot and chastized the paper for printing propoganda.

Then I remembered.

After I hit the send button, I remembered Thursday ... visiting a woman with a disability scheduled to leave the land of the long corridor and come home. We showed her a video of her new home. I watched her cry. Break down and cry. When she saw her new home. It was like she finally won at the game show 'life' and was 'getting out of jail free'. She trembled with excitement as she pointed at a room and said, "I want that one.' But no reporter is going to talk to her ... what does she know, she only lives the life that others talk about.

And I got angry again.

Enough. Enough, enough, enough. Disphobic attitudes and disphobic people need to be confronted. I know there is little likelihood that my letter will get printed. I didn't write it to get published. I wrote it so that some damn letter opener, letter reader at the paper will go ... "Wow, I didn't know that people would get ANGRY at the idea of continued institutionalization." Can we stop EXPLAINING and start YELLING being UNREASONABLE being RUDE being UNCOMPROMISING being RIGHTEOUS being INDIGNENT being CONFIDENT THAT WE ARE RIGHT. Can we start calling a bigot a bigot and throw and spitting clawing temper tantrum - even if it's on paper.

Please, anyone who read that article here in the Toronto area. Grab a few mintutes and yell at them. Forget being polite - get mad and let them know it. Call the paper, deluge the reporter with emails, DO SOMETHING.

My first post on this blog was called ... there is a line I will not cross ... how about we all agree that we're going to get angry a little more, be 'understanding' of bigotry a little less, and speak up a lot more.

A LOT MORE.

home schooled

Driving to work this morning we took a different route having been warned by the radio that a truck had dumped tires all over the northbound lanes of the 400. The southbound lanes, of course were equally backed up as drivers slowed to catch sight of the mess. We, however, went on the country roads. It was a nice change and though the day was grey our spirits were bright. I caught sight of a school just outside of a small town that had one of those electric portable signs on wheels out front. It claimed that the school was building character and that today's (or this month's) character trait was 'empathy'. I smiled. Yeah, I thought to myself, you can teach empathy.

A couple days ago I was working in Boston. I had arrived at the office early and chatted with people who were slowly dribbling in for the day of consultations. One of the women there was a high up government official type and I listened in to a converstation she was having about a woman with a disability. She was excitedly talking to another mucky muck and explaining how well this woman was doing. She bragged on and on about the new skills the woman had learned, how she was coping so much better, how she had grown and matured. So full of pride that some of it slushed out of her eyes that she had to gently dab the excitement away with a kleenex. She admited that her mind had been forced to expand to include the possiblity that it was possible for the miracle of maturity to touch even those that seemed completely lost.

Yesterday I was meeting with some folks at my home agency and one of the staff was talking to me about a guy that she was supporting who was making a really big, and really permanent decision. She wanted, desperately, to counsel him against it. She didn't think it was a good idea. All she wanted me to say was, "Let him make up his own mind. He knows what he wants. We don't always know better." But I didn't say any of those things, she didn't really need me to. Right in front of my eyes I saw her grow. Mature as a care provider.

The other day I met with a young man with a disability, downcast eyes, broken spirit. Oh, I knew he could be a hellion, a manipulator, a generally difficult guy. But right then, in the interview we were talking about his past. The rapes he'd suffered. The abuse that he'd dealt with. The path that was chosen for him ... the one that he couldn't seem to find an exit ramp from. In those moments that we talked we were both entirely present and both entirely real. His hurt radiated out of him and enveloped me. I fought my own pain back so that I could experience only him - without contaminating the experience with me and mine. For the first time he understood that he was a victim. That what had happened wasn't his fault. The words, gently spoken into the air, grabbed his heart and shook it hard. He looked at me and I saw the boy he once was - and for a second saw the man that he could be. As we drove away from work that day I was quiet. Joe asked what was wrong. All I could say was ...

Today changed me, I don't know how, but I know I've been changed.

We who work with, or parent, people with disabilities have opportuntities to grow. With eyes open and heart in motion we can always be in the process of becoming.

I don't think character is taught.

I think we practice it until we get it right.

Silver Threads

He's one of my prized possessions. Sitting by my desk for years, I sometimes forget he's there. But he is. I noticed him this morning. The case is about 3 X 4 inches and you can tell by looking at it that it's old. The cover is some kind of faux leather and it's finely and minutely detailed. Opening it by pulling two tiny hooks through eyelets, like clasps on a locket, one sees a soft red velvet pad decorated with a floral design and on the other side an elaborate gold frame that holds a daguerrotype which is an early form of photography. To see the picture it is necessary to get the light to hit it just right, other than that all you see is a silver hue.

The boy in the picture is probably about 4 years old. He sits in a wheelchair with his hands resting comfortably in his lap. His shirt is severe, buttoned right up to the neck where a white ruffled collar peeks out. He looks at the camera gravely but confidently. This is a rich kid. This is a loved kid. This is a disabled kid. His wheelchair fair gleams as if it was polished just before the shot was taken. The photo and it's elaborate frame and the case must have cost a small fortune at the time. I found it on ebay a few years ago when I was collecting antique photographs of disabled children. I gave up collecting when someone at a conference stole the whole collection out of my briefcase, that act disheartened me. They didn't get this one because I never carried it with me.

But here it is. I like to look at this kid because he, in his small way, gives me tremendous hope. Someone who knows the history of photographs would have to tell me when daguerrotypes were made, but it was generations ago. You hear only about how kids with disabilities from the distant past were hidden away, denied, institutionalized, brutalized even murdered. But here is evidence that the human heart did not learn to love with the 60's generation. Here is evidence that disability didn't always, for everyone, equate shame.

I love what this kid represents. He represents the idea that love and hope have always been eternally present for people with disabilities. That no matter how harsh the prevaling attitude there will always be someone somewhere with their heart intact. It means that we belong to a long heritage of caring - a long heritage of hoping and a long heritage of remembering.

I'd love to show it to everyone reading this but all I can do is describe what it is that I hope and tell you why I find it dear. Funny, I'm glancing around my office now. Right above my computer is a photograph taken by a man with Down Syndrome, a painting of an ocean scene done by a leader of self advocacy in northern California sits on the opposite wall, a box made by client artisans from the Tri-Town and District Association for Community Living sits on my desk beside a huge statue of Edward Sissorhands, a photograph of my beloved dog - Eric sits like a guide dog beside an autographed photo of Helen Keller, and then there are the usual pile of discs and papers and staplers and pens. I like being surrounded by these things - they give me pause in my day to just reflect on history, art, creativity and possibility.

But it's this picture, and the mystery it holds, that grips me most. Who was he, and how was it that this picture was taken? My whimsical side thinks that this picture was taken in the past to give the future a shake, tell us that we aren't so special and to get on with providing what this kid got.

So, lets do just that.

But'cha are ...

"No, you're not!!" Brian was insistant. It was my first year as a consultant and I'd been assigned a school to the far north of the region. A young boy there, Brian, had been referred for hitting other kids and, once, throwing a rock at a group of kids. It wasn't long before it was reported to me, by Brian not the school, that Brian was a victim of teasing. He had been called names, lots of them, and using a rock as his defense he tried to silence them.

Truth to tell, I hated walking into that school the first time. Memories of "Lardass" and "Fatso" echoed along with my footfalls in the hallway. No one called me names there that day, probably because I was being escorted to the 'special' classroom by the principal who was waxing horrific over the 'lads' behaviour. I was to design a behaviour programme to bring his behaviour under control. That was my job and I would do it.

But after a couple of visits to the school, I fell into chatting with Brian. He had the sullenness that youth are particularly good at - but he thought I was funny and he was easy to engage in conversation. I wanted him to talk to me about the teasing. I wanted to surprise him with the news that bullying went back to the Roman Empire - you know, when I went to school. Finally he openned up.

The upset about the teasing I expected but what was troublesome was his denial of his disability. "They called me retarded. I'm not retarded," he had said. I wanted him to understand that he was different, sure, but that he shouldn't be subject to mean taunts. The word 'disphobia' now growing in common use to describe hateful and bigotted attitudes and practices towards people with disabilities had not yet been conceived or coined - but I wanted him to understand at least prejudice. The best way to deal with prejudice is pride, not denial.

"Look at me," I had said, "I'm fat."

"You're not fat." He said. A simple statement. Well, if I'm not fat then 99 percent of the world is anorexic. "Yes, I am" I said. He was resolute, but I insisted. He relented, "Well, you aren't fat to me."

"Brian, I am fat. It's OK that I'm different. It's not OK for people to call me names. It's not OK for people to laugh at me. They're wrong to do that. But, still, I'm fat."

"But 'fat' is a bad word. My mom told me not to call people 'fat'." I told him that the word 'fat' just described me. Calling me 'fatso' or 'lardass' was something very different.

Brian, like many people with disabilities, could see the disabilities of his peers while his own was invisible to him. He wouldn't admit it. Not yet. The cost of being disabled just seem too high to him, but I knew the price that denial would one day take on his soul.

We spent that year working on a behaviour programme that had data points and graphs. But we also spent the year talking. Brian slowly started to identify has having difficulty with learning and maybe being a tad slower than the others. As his self honesty started to grow, so did his self esteem. People who lie to themselves, never ever ever love themselves.

The teasing slowly stopped because Brian started to understand that he didn't have to react, more, he didn't need to care - the people who called him names were just mean. Near the end of the year I was walking with him at recess and one of the lovely children, one of the one's who gives her mother such joy, she was such a dainty tresure, called out, "Who's your fat friend Bryyyyyyyyyan?" I've always thought it fitting that those who spoke ugly words always said them from ugly mouths set in ugly faces.

He looked at her and said defiantly, no shame in being with me, "His name is Dave." That was it.

On the way back to school he said, "You know you are kind of fat." I laughed, loud, it startled him. "Yeah, Brian and you're kind of slow." He laughed too and raced ahead of me to the classroom. When I got there he said, "You're a bit slow too."

I leaned up against the wall and laughed till the tears came flowing down. Brian grinned for a bit and then burst into giggles. The teacher, always sensitive to the moment shushed us.

Brian, the slow kid, did just fine.

Turning the Paige

Ruth and Ron. Ruth ran a small specialty store just around the corner from where Joe and I lived on Alexander Street in Toronto. Ron worked as an art director for a Christmas light company. That's what they did, that's not who they were. (A delineation that many do not either make or understand.) They each had a whole life that they owned and only part of their lives touched mine. But I feel so grateful to them. I have always prized the wisdom of elders and, lacking parental love and affection as a child, I sought out my own family in my own way. Ruth smoked too many cigarettes in a day and drank her Scotch neat. Ron couldn't tell a joke withoug disolving in laughter never finishing, never making it to the punchline. Ruth loved the racetrack and telling tales of London and youth. Ron loved, more to listen than speak. In their way they each parented me. Gave me freely of their love and affection. Gave freely attention and even more carefully considered advice. I am fortunate that two people, no children of their own, found me when I desperately needed to be found.

I think of them when I think of Paige. I met her in Maine, I think, she was a surprising woman. Living a rare life - with a rare disorder that was supposed to kill by 6 - she proved that doctor's at best, guess. When I met Paige she explained to me that she had Trisomy 18 (I think) and had been misdiagnosed as having Down Syndrome. She did have an intellectual delay, but it was so slight to be barely noticed. I met her as she was going to college taking Early Education as she wanted to work with children. Her goal came from her experiences being placed to work on wards with babies in an institution where she lived for a long stretch of her life. She loved the role that she had of care providing. She loved that she cared for her own. She wanted the babies that she touched to know of her care - of her hands touching them gently. She had seen what institutions did to adult and child alike. She wanted to give, for just a second, a loving parent's touch. She almost cried as she explained to me that she could feel the children loving her back.

And Stanley. What a gentle gentle man. I met him on my first visit to a group home that was oddly structured, it was two homes in one connected by a passage way. It was way way way more "home" than it was "group". I still remember that house and the people who worked in it. I remember then learning that it was possible to provide real love and real respect for people with disabilities. I was there to meet about those who had behaviour problems and what I got from staff was unstinting concern for those in their care. It astounds me still and whenever I drive by where the home stood I always, always point it out to Joe. Now he points it out to me before we even get near it, "Isn't that where the house was that ..." And then he laughs at my predictability.

But I met Stan at that house. We chatted one day and he talked to me about the institution that he had moved from and he told me about his 'boys'. It took a second but then I realized as tears sprung to my eyes that he was talking about some of the younger guys who had moved on to the ward and, in their first days, were frightened. Stan would seek them out. Make sure they were OK. Never was a human being more worthy of being called a gentleman. For he was that. I was touched to know that where there needed to be a loving Dad ... there was Stanley, where there needed to be a loving Mom ... there was Paige. And Ron and Ruth and thousands of others who love without counting the cost - because they want to - because they can.

It amazes me that there is enough grace in the universe to light the path of a needy boy into Ruth's shop, into Ron's presence. It amazes me more that that same grace placed Paige where she needed to be, and placed the responsibility to love into Stan's heart.

We are not alone.