Nat

Two tiny breasts peeked out from between dirty fingers. No matter how much she was asked to set her doll down, "Topless Barbie" stayed in her grasp. We were in, no kidding, Pocahontas Pancake and Waffle House in Virginia Beach and the place was packed. It's holiday time, what with March break so there were families and kids everywhere.

I saw her immediately. I love the look of a resolute face - child or adult - determination is attractive. And she was determined. No way she was letting go of her Barbie. Somewhere along the way Barbie had lost her top and her two pink breasts were in stark contrast to hands that had dug sand and had refused washing. Somehow I could understand why she held so tight. The three adults with her, two parents and a grandmother, kept trying to trick the doll away. Kids don't like to be tricked.

Pointing her out to Joe, I heard myself speak, "Kids know when adults are being duplicitous." Bang. She was back in my mind. Nat had moved out of the institution bringing her wild hair and her frightened eyes with her. She had little. Wanted less. "Almost like a feral child," the psychologist had described her to us. Didn't seem to want affection or even contact with those around her. She could sit in a corner of a room and become invisible.

But she never sat alone. She had a doll too. Not a Barbie, not that upscale, maybe Barbie's second cousin from the mountains. The doll had lost most of it's hair but what remained was coiffed like Nat's. A wild tangle. Nat could speak. If swearing and threatening could be called speech. At our first staff meeting one of the female staff looked defeated as she said, "It's like she hates us. Really hates us. And she doesn't even know us."

The supervisor, a very very cool guy, said, "She knows us. She knows staff. For some reason she's lost trust in the system. Trust in us. That's our primary job. Getting it back." At that same staff meeting another staff brought up her doll. The words 'age inappropriate' were used. The supervisor bristled, "She's lived an inappropriate life, let her have whatever she needs. I never want to hear about that doll again. It's hers. Leave it alone."

We knew he wasn't kidding. We knew that he passionately cared about this. We left her alone. She carried that doll everywhere. She was never tricked to leave it behind, she was never, ever, asked to give it up. It was never washed. Never even wiped down. It was left in her care and in her way she cared.

It was a Sunday when I came in. I found all the staff quiet and the house silent. "What's up?" I asked. No one answered. The door to the office was closed but I could hear crying inside the door. Now I was worried. There were two other staff there but they were white and grave. One resident was upstairs but the others hadn't come back from church.

"What's going on?!" I near shouted the question.

"Go ahead, go into the office."

I knocked gently and hearing nothing I entered. The supervisor sat behind his desk. He was crying like a baby. In his hands was Nat's doll. He looked up at me and said, "She came in here before leaving for church, she gave this too me and told me to keep it safe for her. Dave she spoke to me. She gave me the doll. I don't think I've ever been given a gift like this."

I was crying then too, in truth now as well with the memory.

Nat gave over something she loved to someone she trusted.

That is one of the biggest leaps that a human makes on the journey through life.
Trust takes time. Sometimes lots of it.

Trust takes safety. Sometimes lots of it.

Trust passes trials. Sometimes lots of them.

"Are you OK," Joe asked.

Then I was back in Pocahontas Pancake and Waffle House. "Yeah, I'm just remembering something."

"Good?"

"Yeah."

Beaches

No one noticed me sitting there.

We had parked in Virginia Beach in a disabled spot that looks over the beach and onward to the ocean. I didn't feel like getting out of the car so we did down the windows, whirrred open the sunroof and thus let the cool air inside. Joe went for a walk, promising to be back in a half an hour so we could go to the movies. I pulled out the book I'm reading, one that I'm going to buy for about 6 people I know because it's stunning, and started reading.

The car was parked beside a store that had beach fashions in the window and several small groups or couples stopped to look at the display. None of them noticed me sitting in the car, all they saw was a parked car. So I got to hear a group of teen girls yattering on about the colours and 'oh my God I just love the pleats', a couple wherein a largish woman said to her smallish husband as she pointed to a tiny blouse - "I like that top but it's not me," he nodded but kept his mouth shut, the two college guys made "kiss kiss" sounds aiming at the mannequin in the bikini, it was fun.

I set my book down and just looked out onto the sunny beach and felt the warmth of the sun mixed with the coolness of the breeze. A perfect moment broken into by sharp words. A couple, not young, was fighting as they walked up the sidewalk. Completely oblivious to me they battled. Behind them walked a woman with Down Syndrome, maybe thirty, maybe a bit more. She was having difficulty keeping up with their pace, quickened I'm sure by anger. She looked upset at the fight. Her voice was breathless, 'Mom'. No response. 'Dad'. No response. The war raged on and now they were right beside me. Stopped by the window. My, oh my, the things they said to each other.

She noticed me sitting in the car. She stared for a few seconds and then shrugged her shoulders. I smiled an encouraging smile. She got a little defensive and said, "They aren't always like this you know."

At that they looked first at her and seeing her look at me they followed her gaze and saw me sitting in the car.

"Sometimes they embarass me."

"That's why God made parents," I said. She nodded, like she was thinking about what I'd said.

I watched them walk away. Mom and Dad blushing. Daughter smiling.

The day had resumed it's course. For them and for her. I could tell because as they hit the beach the tension broke and they all fell about in fits of laughter.

As I went back to my book, I thought, "They are going to tell this story way differently than I am, but they are both good stories."

The day kept getting better and better.

Assault

I woke up with the intent of having a 'non-blogger' day. I wanted nothing to write about. I wanted just to have a day off and enjoy having a day off. That lasted as long as the walk from my room to the hotel computer.

An email from Jon Dionne was waiting for me first thing this morning. He asked if I had heard about a case of a black guy with a disability being beaten up by white kids in Texas ... if I had heard that they just got a slap on the wrist for beating this guy so badly that he's in a nursing home learning to walk and talk again.

I had to.

I looked up the name 'Billy Ray Johnson' in Google and found the story. I ran out the 21 page article and took it with me. As Joe and I drove through Virginia Beach I read the story aloud to him, pausing for us both to react, with horror, indignation and even fury. By the time we got to the movie theatre I hadn't seen the beach, the ocean, the storefronts, nothing. And I was agitated. So was Joe who kept muttering under his breath about how cruel people could be. Driving through beautiful scenery reading about incredible brutality, that's how I spend my holidays. Fun. Wow.

So I was already in a state when I got into the movie theatre. We went to see "Wild Hogs" because we wanted a laugh. I parked my chair in one of the disabled spots and Joe went to get popcorn and pop. The front row filled up as a group of disabled people, mostly in chairs, arrived with a couple of care providers. You could tell they were care providers because they wore staff identification tags.

They had to rustle around to get everyone set and then one of the guys in a chair wanted something from the consession stand.

Well.

The nerve.

The movie was still a few minutes away from starting but she walked out there with an attitude that was clearly a slap across his face. He showed - fear. Actual fear.

I want to say this clearly to her and all like her.

You ungrateful PLOD. (Person Living Off Disability)

You are there to take him to the movie. You didn't buy the ticket to the movie. You are at work. You are getting paid. If he wanted popcorn at fifteen minute intervals it's your damn job to go get the popcorn. Who the hell do you think you are anyways - realize this, without him, his disability and his inconvienient desire for popcorn HE WOULDN'T NEED YOU AND YOU WOULDN'T HAVE A JOB - you'd be broke and left to your own devises to find victims for your pleasure.

If you act like that - like he's a piece of crap that you have to put up with. If you who are supposed to be here because you CARE, admit it you said it in your interview, then why are we suprised that people with disabilities get what they get by others in the community.

Yes, that's right, I'm drawing a direct line between you and your behaviour and the punch that put Billy Ray in the nursing home.

You didn't just get him popcorn.

You taught everyone in the theatre that it's ok to disrespect someone with a disability.

His fear taught them that he was a good victim.

Congratulations.

Good days work.

I hope you are proud of what you do.

For Unto Us

I always feel weird.

Like I want to explain to everyone why I'm there.

Joe feels the same way too.

Macy's baby department is astonishing. The fashions are incredible. With Easter coming they had little girl frocks that were clocking in at 'drop jaw' prices. But we were here shopping for a baby boy. Matt and Alicia have a shower coming up and we wanted to get some cool stuff and get it into the mail so that it would be there in time for the shower. Our travels keep us away but I couldn't wish them more happiness. They are a lovely couple and I got to know Alicia a couple of summers ago when she came along to my summer school classes outside of Ottawa.

Anyways, as we were shopping, we'd pick up stuff and get giddy at the cuteness of it all. Out of the corner of my eye I noticed a woman talking with the clerk and I was sure I heard the word's "Down Syndrome" so I creaked my chair as close as I could to overhear. The woman wanted to buy something for her friend who just had a baby with Down Syndrome. She actually asked, "What do you get a baby like that?" The clerk actually said, "I really don't know."

Joe, hearing it too, gave me the 'go ahead' look. He says it's kind of like signalling an attack dog, but he also thinks he's funny.

I said, "I do."

They both spun at me, not with hositility but with surprise, before anyone could say anything, I continued, "I know lots of people with Down Syndrome and I know lots of parents of kids with Down Syndrome. It's kind of what I do for a living."

The woman looked relieved and said, "I just don't know what to buy."

"Boy or girl?" I asked, matter of factly.

"Girl," she said giving herself over to my easy authority.

We picked out some beautiful girly cloths, all pinks and laces, bows and blouses. In seconds she got into the spirit of it and was having fun. "So, it's like shopping for any other baby."

"Yes and no," I said.

She looked at me curiously, so I continued, "The most important gift you can give your friend is the gift of congratulations. A baby has been borne. This is not a tragedy. People with Down Syndrome grow up and date, marry, get jobs, live independently. They have a joyous trip ahead of them. Celebrate with them."

She thanked me as she went to buy her stuff.

"Remember to say ...."

"Congratulations," she said.

Amen.

Sugar

I had to stop.

Joe had to roll his eyes.

It has always been thus.

When we are on a long drive, say the 1000 mile journey from Orange Beach, Alabama to Norfolk, Virginia, Joe's approach is stop for gas, stop for pee, stop for nothing else. He becomes a fiend at the wheel. Me, I can't believe we're driving by the Laurel and Hardy museum without even thinking of stopping and, really, what would 5 minutes at Pedroland have taken. So I was met will little enthusiasm when I said, "Surely we can stop for lunch. We've been driving since 6, we ate at 5, it's 1 in the afternoon."

I was pleading because of the place. It was a little diner. The real kind of diner. The one that's in the 'late night diner' painting with Elvis and Marilyn and James Dean hanging around having coffee. I'd never been in one before - because we always drove by too fast to think of stopping. But it was lunch, the diner was right by the gas station, Joe had little he could say.

It was a bit tricky getting the wheelchair up but I had to, I've used it a bit more on this trip as my legs aren't working quite right. Once inside I wasn't disappointed. There was one other couple there finishing lunch, a waitress out of central casting, and tables by the window. We asked for the windows and she muttered all the way over to the table, "The customer is always right, they don't care that we have our own ways of seating people, they don't care that the waitress is going to have to walk all the way over there." Then like we hadn't heard her little diatribe she pointed at a table and asked like she meant it, "Would this one be OK?" We nodded and were sat down with the menu.

The menu didn't disappoint either. Though it was full of healthy things like, kid you not, deep fried cheesecake for dessert, it had lots that we, as vegetarians could eat. I'd had fried green tomatos the night before and couldn't wait to have them again. So I order those, with green tea, the waitress, who had a different spirit than the 'hostess' laughed and said, "Well it is getting close to St. Paddy's day." I didn't get the joke but I laughed. Joe pointed out the 'green theme' of my meal when she left.

We began to talk. I could tell the waitress was listening because she looked like she wasn't. That's how I do it too. I was whining a bit about all the driving and all the travel. We talked about the conference in Orange Beach and the upcoming work in Norfolk. Then we talked a bit about a couple of other things and I was waxing poetic about things Vita, talking about where we are with the abuse prevention changes and the upcoming conference.

Lunch arrived. She delivered them to the table and then leaned back and started to chat as we tucked into our meal. She said that she couldn't help overhearing our chat and were we on the road a lot. I nodded - looking for sympathy. She said to me, in that charming way Southerner's have, and said, "It looks to me like you can't tell shit from sugar."

She explained to me that she worked two jobs to make ends meet for her family. She worked here at the dinner during the day and she worked in a 'care home' she called it for the elderly in the afternoon. "It's hard," she said, "but I wouldn't give up that job for the world. Those old people need me, they have nothing left, and if they don't have me they don't have nothing. I know everyone things those places aren't nice. Well, they are as nice as the people who work there, and I go there to be nice."

"It's a living," she said, "but it's also a good way to live."

"You get to travel around and talk to people about working with special people. That's sugar, baby. Working in a diner to pay the bills, that's shit."

I felt chastized.

"Tell me," I said, "I always like to throw in things that I've learned from people I meet into my lectures. What do you want me to say about being in service to others?"

That flustered her and she lost her self confidence. "I don't know, sir, I surely don't know." And she left us.

I felt like she might have thought I was being smart or trying to show her up, but I wasn't.

I thanked her on the way out for the chat. I promised to be careful with the shit / sugar thing. She smiled and said it was nice talking.

A few miles later I was putting the bill away in our receipts folder and noticed some writing.

"No matter what kind of day you've had, take gentle hands to work."

She signed it, Sheri-Lee.

Grill Chef

He had to stoop down to see me, but he did. A tall man, he had to look by the 'sneeze guard' to see me sitting in my chair.

I was placing an order for an omlette at one of those breakfast buffet things that hotels have. The guy cooking the omlette was quite chatty as he took my order and began working on a personallized breakfast for me. Turns out he's only there for one more morning and then is moving down to the grill for the summer. The hotel is right on the beach in Orange Beach and I said that working the outside grill would be awesome. He agreed.

He said that for 7 years he'd worked as a night chef and didn't get much of a chance to meet the guests and he enjoys working in areas where he can meet the people who eat his food. "There's not much point in being in the service industry if you don't enjoy meeting the people," he said. By the time I had my breakfast a small line had formed behind me and I could hear him chatting with others as he took their orders.

A couple tables away I heard two women talking, they were both wearing the name tags given out by the conference. They had obviously got the same story from the chef but one of them was really upset. From what I gathered she was in senior management in an organization serving people with disabilities but that she had also stopped meeting the people she served.

"That damned chef," she said with a teary voice to her friend, "shows me up. I've forgotten the basics."

They chatted and I could hear resolve in her voice, I think she was going to go back and be a very different person.

Later I met her again after she'd attended one of my sessions at the conference. She told me that she'd come to the conference to hear me speak. I was flattered but said, "But you had the great good fortune of hearing what the chef had to say."

She looked embassased for a moment but I said, "Listen, we learn from whom ever is sent ... isn't there as saying something like, 'when the student is ready, the teacher appears'.

So the teacher's a chef.

As long as the lesson is learned.

Sometimes you pay to learn, other times you just need to pay attention.

Perdido Rules

I want pitch a fit.

Like a rock star, I want to smash the furnature in my room, punch holes in the wall and write graffitti on the bathroom mirror.

I want to.

But I won't.

Instead I just slammed down the receiver of the phone, not even swearing at the front desk clerk, and sulked. This is what you do when you are over fifty, semi-respectable and too tired to get much of a head up. I had called downstairs to be told that the hotel has a business center with computer internet access but it's closed on weekends and only open from 8 to 6, Monday to Friday. It's Sunday, I want to check email, write my blog, and check out local movies. But, no, the center is closed.

Cause that's the rule.

No one I spoke to understood the 'why' of the rule, they only understood the 'that' of the rule. And I am powerless in front of their need to assert the right of rule. And it angers me.

Deeply angers me.

But this is what it is to be at the whim of others, anonymous rule setters who will never meet me, never understand my needs and never desire my confidences.

In two weeks I go back to my office at Vita. I'm going to take the page out of the information binder that outlines the rules of this hotel and have it copied. It will be my souvenier of anger and my keepsake of powerlessness.

I want to be reminded of what that feels like.

Because I don't like it done to me.

So, pray, let me not do it to others.

Mobile

Today we drove through Mobile, Alabama, on our way to Orange Beach where I will be lecturing for the next two days. As we hit the outskirts Joe asked me, "Do you remember the self advocate session you did in Mobile a few years back?" I told him that I did. Without another word we both laughed.

I had been asked to do a session for the self advocates in Mobile by a woman I've known for years. We'd met when she was working in the north and then she and her family moved south. She knew I did self advocate sessions because I'd done one for her in Illinois. There it had been a typical group of self advocates who came together to talk about rights, there was laughter and grumbling and even the occasional complaint. A good group, like almost every other group I've facilitated except the concerns were regional even if the themes were universal.

Then came the group in Alabama.

I've never done a self advocate group like it.

They were so, what's the word, genteel.

Well mannered young ladies and gentlemen.

Captain Butler and Katie Scarlett O'Hara with a disability.

Here a behaviour problem would be forgetting to dump a bucket of sugar into a cup of iced tea.

It constantly surprises me, in a way that confirms the fact that I still have prejudices to conquer and stereotypes to eliminate, that people with disabilities are as much a product of their culture as they are a product of genes. These people with disabilities were a reflection of their upbringing, they behaved like other non-disabled southerners. I know that, but it still suprises me.

I remember being really surprised to see a young woman with Down Syndrome speaking French in Quebec. At first I thought it was 'cute' that she could do that. Then I realized that she spoke French because she was French Canadian. Duh. And don't make me tell you what I thought when I first spoke to a self advocate with a British accent!

So then ...

Disability doesn't mean foreigner.

Or...

Resident alien.

I need to be reminded of that regularly.

Professionally.

Personally.

Dual Citizenship

Sometimes I think I should just give up.

Stop fighting the good fight.

Just admit that I've been diagnosed "terminally male" and be done with it.

Two days ago I wore my red shirt to work. Donna, who works at the desk, is a large woman who is one of the best dressers I've ever seen. We often talk clothing and I know she has always wanted to see me in more colour. So, I wore my red shirt to work.

I came in, strode up to her and said, "I wore red today, just for you."

She smiled, finished what she was doing, then looked up at me. "That's burgundy," she said witheringly.

"Um, no, it's red," I said.

"Well, OK, if that's what you want to think," she said with irritated patience at the dimwittedness of men who can't tell red from burgundy. What the hell is taupe anyways?

Then a day later at the other office two women raced to ask me a question. I had written a piece for the staff newsletter about the retreat and had mentioned that there was someone there who was surprisingly competitive. Each thought I had written about her. They had a been arguing about who had been written about, first, then who was most competitive, second. Personally, I think they should call it a draw.

Then I was asked flat out by one of them, I knew immedately that I was in trouble. I was going to be in trouble one way or another. There was no right answer that would save me from grief. I thought fleetingly, "Why would men have affairs and risk two women being angry at once?" One was scary enough.

But I had to answer so I told her that I had had her in mind when I wrote the piece. She smiled victoriously. Then the other asked and I told her that I had been thinking about her competetive friend. She teased me that I should have just lied and said it was really her.

I said, "I thought women wanted men to be honest."

"Not about things like this," she said with a look that said 'institutionalize this guy'.

You know what's funny, when I first wrote this I had written both their first names down, then realized that I'd be asked, "Why did you put her name first?" So I gutted out. Backed down. I don't want to walk into that situation so I've changed the text. Sometimes, at work, I feel like I'm swimming through estrogen.

A few days ago at the Science Center's Superhero exhibit, they had a series of 'black holes' that you were to put your hand in to see if you could figure out, just by touch, what the object was. Joseph, 12 year old wonder kid, and I got there first and we did well. The final one I put my hand it and said to him, "No man will get this one wrong." Joseph shoved his hand in and announced, "It's a television remote control!"

We both laughed and Joseph said, "I wonder if any women will get that one." The woman behind me, overhearing the converstation muttered under her breath, "Finally, something a man can do." She said "man" in a tone that most people use when they talk to a dog that's soiled the carpet.

OK, so I give.

I'm a guy.

I like beer.

I like burping contests.

I like smutty jokes.

I like the remote control.

I like the fact that in my world, burgundy is just red.

If being male is becoming a 'disabling condition' then half the population will immediately apply for parking passes.

Coolio.

And me?

I'm in a wheelchair and I'm a man.

I guess that makes me dually diagnosed.

RRC

We were walking along a beautiful treed path going from one building to another. I don't remember the city or state, but I do remember the small campus that was hosting the workshop I was presenting vividly. Equally I remember the woman I was walking with. She was animated and a quick talker. God save me from slow talking people. People who choose their words carefully and thoughtfully, people who say every syl - a- ble. Yike. Talk. Say what you have to say. She spoke quickly as if the words couldn't get out fast enough.

I had talked a bit in my presentation about how we mistakenly protect people with disabilities from life, from risk, from pain. She was telling me about a young man with a disability who had been disallowed from knowing about his father's death, attending the funeral, bringing flowers to the grave. The family thought that the death would 'upset' him. Um. Yeah. So his father was here one day, gone the next and no explanation given him for the disappearance, after a while he stopped asking.

She told me that she used to take her dog to the group home because all the guys there loved him. Tragically her dog was killed in a freak accident and she was terrified about bringing the subject of death into the home, frightened about how he'd react to the disappearance, would he suddenly figure it all out. But she decided that she would tell them all the truth. She arrived at the home, sat them down and told them about the accident and the dogs death. She cried as she told them, she cried a bit as she told me.

Feeling good that they'd been treated as adults and had an opportuntity to express their grief, she was then surprised at her next visit to the home. The young man, lied to by family, asked where her dog was. She sat him down and said, simply, "He died." He looked at her, eyes filling with tears and said, "He just keeps on doing that doesn't he?"

We laughed. A sad laugh. But we laughed.

The other day, I wrote of Janice in a group home singing her song. My best friend, Bob Clayton, worked in the home too. We had so much fun working shifts together and we fell in like with each other quickly. I would always check the shift lists to see if Bob's initials RRC were on the board on the same days that DH were there. I loved those shifts. So did the folks in the house. They liked all the laughter. We stayed friends even though he moved to Vancouver to take up a life there. I visited him regularly and talked frequently on the phone. I saw him slowly dying as AIDS began to claim him.

Even so I was unprepared for his death. Death, even expected, can never be prepared for. It hit me hard. All these years later, I still sometimes remember something that Bob said, something that we all did together, his bad choice in boyfriends, his great taste in decorating - all of it. Then it hits me, almost fresh, Bob's dead. "He just keeps doing that doesn't he", I now say to myself.

That young guy with a disability got it. Death isn't a singular event. It's repeated regularly when someone was loved.

What makes me truly smile is that Bob always wanted to be the subject of one of my stories. And I tell two Bob stories in my lectures and now he's visited my blog. This isn't morbid at all, because for the brief time that I write this, he lives again in my memory and in my heart. I'll have to say good bye again in a few minutes from now because he keeps dying, going away.

And until today I felt sad that that young man didn't understand loss.

Now I realize that he did, better than I.

3

"Do you have to? All the time? Do you have to?"

We were in the midst of a full fledged fight. I'd like to call it an arguement but in fact it was a fight. I had just taken on a parking lot attendant who had refused to let us check and see if there was any disabled parking left - instead they were sending us to a lot blocks away. I won, we got in and found parking.

I could tell by the edge in Joe's voice that he was upset.

I thought he'd be glad, we were parking so much closer. It would be easier on him to because I need his help and he'd have had to push me a long way.

"What's wrong?" I asked.

Never ask "what's wrong" unless you are ready to hear it. Ready for a fight.

"Why can't you just leave things alone sometimes. Why do you always have to be so difficult? Over every little thing."

Joe is a nice guy. Doesn't like to cause problems. He likes to laugh. He is easy going. He doesn't take life too seriously. In other words he is so 'not me'.

So I got mad right back. That's always the best way to respond to criticism, I find.

"Because I have to. I've been like this my whole life. I don't like it when people don't listen to me. I don't like it when people don't bend."

"But you don't."

OK now I was mad. Really mad. We snitted at each other till we arrived at the meet point and waiting for our friends to arrive. We don't ever fight in front of others so we smiled when they got there and then minutes later we were both having fun, with them, with each other and we each knew the fight was over.

But it's three o'clock in the morning, I'm at the computer only because I need to shut it down. A storm is whirling about outside and the power is flickering on and off. I decided to try to write this blog before shutting the computer down.

Don't think about things at three in the morning. It's harder to self-delude at three in the morning. At three in the morning you might think that maybe sometimes you are 'in the wrong'.

So I think the best thing is just to quit writing. Tell myself that I'd better publish this now before the next power outage. Don't want to go too far into this 'do I use my disability sometimes to play the role of righteous victim' thinking. Don't want to tred that path.

Cause it's three o'clock in the morning and by seven, I'll be myself again.

And Number ...

One:

"Don't Stand, Don't Stand, Don't Stand So Close to Me!" She'd sing the words over and over again. Then Janice would let out a huge laugh and start again. Staff told me as I watched her that she's 'stim' to one song for a week or so then move on to another more current song. She'd sing only snatches of the song over and over again. Laughing. Loving the song. Loving the singing. Loving the moment. Janice would become the song, become the singer, the music didn't change her, it transformed her, she became something more, much more than anyone thought she was.

Tracy would lay for hours curled into a little ball. Little interest in the world outside her head, she would be dressed without resistance and sat in a chair limply. She showed little interest as the day's routines flew by her. But when she got on the bed she'd curl up tight, a hand that did nothing else with real purpose would grab the blanket and pull it up over her shoulders and she'd sink into the bed. You could see her disappear from the ward, from the institution, into the great 'somewhere, anywhere, else'. Catch her in the right light, peer under the blanket, and where ever she was must have been nice because she was smiling.

Discovered by a happy accident, Darlene became an addict. Staff brought in leftovers from home. You could smell the curry as it heated up in the microwave. Darlene's eyes, usually unfocused from all the behaviour contol drugs, found the source. She stood by the microwave just breathing in. Her first taste of curry brought tremors to her body. She shook with pleasure. Curry was her drug of choice. It was easy to make her happy. A little taste and she was transported. Out of her body, out of care and into a sensuous world of pure pleasure. It was a treat to watch.

Being there at these transformations, disappearances and resurrections remind me that it's always possible to be transported, to be changed, to be removed - that simple pleasures are meant for complex purposes. That we, by touch, by taste, by sound, can be spoken to in a universal way. That we, through the body, can always commune with something greater. That we, through our connection and commonality, are much more than human and much less than divine.

I am therefore constantly reminded ...

that we are made to remember vanilla and to forget vanity.

It is this lesson, constantly relearned, that I value most.

If that makes any sense at all.

Top Ten

Bar none.

Yep, the best disability website I've ever visited would have to be OUCH ... the BBC site that can be found at www.bbc.co.uk/ouch/ . It's a site I drop in regularly as I did today during a break at work. They had a feature that, oddly because I thought I'd read the whole site, I'd not noticed.

They do a top ten list in a semi (mostly) humourous and a semi (lesser) serious way. All on issues about having a disability or being disabled in a nondisabled world. I loved it. I immediately thought of lists I'd like to write.

For the rest of the day I've had a pad and pen with me. First thing I found out, it's harder to write a 'top ten' list than you'd think. But finally by nine tonight I had a list.

TOP TEN WAYS IT'S COOL TO BE IN DIRECT CARE

10: Everyone thinks you are sooooo patient and sooooo special.

9: You get to set goals for others that you can't reach yourself. Way Cool.

8: Every day is different ... some are even terrifying.

7: After a week you can eat a peanut butter sandwich while wiping someone's butt.

6: A 6 figure income, if you consider the .00 as two figures.

5: Getting really down deep excited when someone buttons their shirt up right.

4: Going to the movies, in the afternoon, on work time.

3: Being trusted to get it right with someone elses life when you get it wrong in your own.

2: Being challenged to grow and learn without being in therapy.

1: Well, that will have to wait 'till tomorrow's post, won't it.

Warning: Rant

Enough!

For two weeks I've been working on a training booklet on the subject of abuse. Physical, sexual, emotional, financial, spiritual, abuse along with neglect and exploitation. I've defined the terms. Given examples - examples that haven't been hard to come up with. I've been writing to an outline set by others - an outline that asked my to explain why people with disabilities are more vulnerable, easier to hurt. I've tried to write this clearly and plainly, I've tried to embue my words with information but also outrage. It hasn't been easy.

I remember too many faces. Of the guy, straight as an arrow, who I worked with. Thought he was the greatest. Thought he was one of the ones with pure heart and right intent. Then of the face of the guy who reported being sexually abused by this friend, the staff. I had liked him. Had lunch with him. Didn't know. I feel fraudulent writing this booklet.

I remember faces. The cool staff, hippy-haired big faced woman. The kind that you looked up to in high school for her wild ideals and her slightly outsider status. I liked having tea with her after the consultation. She spoke so well about her reasons for being there. She didn't tell me that she was dipping into her client's finances. No, that didn't come up over tea. But I remember her face. And his, they guy defrauded who didn't understand about lost money but was hurt by the loss of her. I didn't know. I feel fraudulent even writing this post.

I remember faces. The big guy, big like me. Losing it a punching a woman right in the face. I wasn't in that day. Came in to find him gone. She was fearful for weeks he'd come back. I'd gone for beer with him. He never told me he was at the edge. He never asked for help to step back. He just bought a round and we laughed. I didn't know. I feel fraudulent.

I remember being asked to measure a bruise and draw it's dimentions to ensure the report was accurate. And I type word after word into a booklet that seems somehow to drag me down.

I want to paint abusers all orange. So that we can see them. So that they are noticable. I don't want to just write a booklet, I want science to discover the gene that causes people to hurt other people ... I want them weeded out. Give me Down Syndrome, Spina Bifida, Williams ... any day. We could use a little less greed and a little more decency. How about it gene hunters - how about looking for the cold hearted bastard gene - that's the one you need to go for - leave the disabled alone go for the traits that truly bring misery.

I'm ranting.

I know.

I shouldn't use the blog this way. To just yell.

But I've worked on that book all evening.

Making sure the comma fits between words that shouldn't be put together in the first place, like abuse and trust.

My mind tells my heart that the book will make a difference and people will be safer.

I've called it, Home Safe.

Do you think that's ever gonna be possible?

Thunder Bay

I don't often think about it.

Really.

But I'm not getting old. I'm kinda actually ... old.

When I was in Thunder Bay giving a lecture at the conference on autism there, I met a wack of students from Lakehead College all getting there DSW (developmental service worker) diploma. They were so incredibly young.

And idealistic.

And energetic.

And hopeful.

They had exactly what the human service system needs - ideals. I talked to many of them and was impressed by their pragmatic understanding of what it meant to work in human services, they had just the right amount of cynicism mixed with the drop of passion that's necessary to get through the tough times.

When I talked with them they had actual ideas for what needed to change and where we, as a system, were missing the point. They spoke respectfully about their jobs and where they worked. They sold me tickets to a raffle and promised to give me my prize if I won. Wink.

So many times I've seen people driven out of this field, no longer able to take bureaucratic misfires, political decisions and harsh supervision. Good people. All who leave never complaining about the difficulty of serving people with disabilities but exhausted with serving the system.

I wish for these kids ... they don't know they're kids ... the spirit of forgiveness and the ability to use it when we mess up, the spirit of courage and the ability to stand up to us when we mess up, the spirit of laughter and the ability to laugh it off when we mess up. Because mess up we will. Often. Over big things and small things. We'll make the mess and give you the mop. But you're young, you can do it.

Keep your eyes of the prize.

My generation won the community for people with disability.

Your generation must keep the promise.

We need you.

Oh, and Brian ... go fish.

A Day Out

My inner Grinch was outed for a second.

"The noise, noise, NOISE ..." I said to Joe who immediately got the reference. The Science Center had a Superhero exhibit and there were pictures of Marvel Superheros everywhere. But even more there were kids. Thousands of kids. Screaming. Crying. Whining. Yelling. Laughing. Kids. Suddenly I realized that Ontarians are having way more sex that I had ever thought.

We were both tired. But we bravely carried on. We looked at exhibits, tried out the activity centers, and got a kick out of watching Joseph have so much fun. He's just shy of his teen years and is growing into a really good human being. Ruby, his new sister, fussed a bit but her eyes were caught by all the colours, sounds and activities. After staring at a fantastical world she fell sound asleep.

I pulled the wheelchair up to a series of picnic style tables that were set up for kids to colour and make their own comic books. Adults had taken over one end and most sat staring into space picturing the days before children no doubt. A little boy, only slightly out of infancy, slipped off the bench and fell to the floor. The child, amazingly, did not cry. He just looked a trifle confused as he looked from under the table out to the world.

To my right a blurr of activity and a young man raced towards the fallen child. Everyone stopped. For a moment the room seemed almost silent. We all saw, at once, that the rescuer had Down Syndrome. His eyes were intent on the child and his hands reached out. Horror was all over the faces of everyone.

Everyone.

Including me.

I know that God gave many people with Down Syndrome a hole in their heart so that excess love has a means of escape. I know that they have a capacity for such deep kindness. I have been a recipient of their gentleness.

But, still, horror froze my face.

Mom suddenly noticed her babe under the table and before the young man with Down Syndrome could reach the boy she intervened and picked him up. The guy with Down Syndrome screeched to a halt and looked up. He saw everyone look at him. He was with another young fellow, I never saw anyone else with them but I doubt they were alone. He sat down on the bench and said, "I was just going to help."

God bless him. His heart. His willingness to intervene when all of us stood and watched.

But please, God, let someone teach him to stand back. To not rush in. That men do not reach out and touch, in any way, children they do not know. The child was not in danger. Not crying. Not needing any real help.

But he, the young man with Down Syndrome, needs help. He needs to understand that people already have a prejudice about those with intellectual disabilities.

"I don't want THEM moving in to the neighbourhood, I fear for the safety of my children."

You know what that means.

So do I.

His intent, I'm sure was pure. But in the eyes of those watching, their fears were confirmed. It's prejudice. It's wrong. It shouldn't be. But it is. And because it is he needs to learn some difficult lessons. But they are lessons we've all learned.

Teach him how to stand by.

Like we all did.

Teach him the ways of social coldness.

Like we all are.

Teach him to bind up his heart.

Like we all do.

The world is dangerous when you are different.

The world judges you when you are different.

The world is not safe on so many different levels.

Forgive me. I know that many will want me to say that he doesn't need to change, the world does. And of course I agree.

But until the world changes ...

he needs to.

Scary Mom

There are three computer terminals at the business center in this hotel. Right now I am seated at the one on the far left, right by the wall. I've always liked being with my back to the wall - that way danger can come in only one direction. I glance at the computer stand right next to me. Smile. It was a good night last night.

I checked in late and stopped by to check to see if anyone had posted comments on my blog posts. Nope. Then checked email. None. Feeling rejected by the web I was about to leave. Just then a woman and teen son entered the business center. This is one that is privately run and you have to check in, pay and have the clerk log you on. As she was busily paying for her son she said, "I'm coming back in a half hour. Don't go anywhere else. Do you understand?"

Even teens with disabilities can be embarrassed by their moms. He rolled his eyes. She looked at him with a look that's said, "we've been through this before young man and I really mean it this time." Then she looked at me and an odd expression crossed her face. I didn't think much of it, I get odd expressions often.

She left and the clerk signed him on to the computer one station away. The clerk asked his name, he answered swiftly, "I don't tell strangers my name." The clerk looked offended but I was kind of pleased.

Then the nameless one looked at me, "And you are a stranger too so don't talk to me cause if you do I'll tell my mom."

I nodded and said, "That's enough to scare me."

He burst out laughing. So did I. Even so, he did what he needed on the computer and got him self going.

"Mom told me that I had to know three things about someone before they could be trusted." He looked back at the clerk who was listening in, "And I don't know anything about you guys so you can't be my friend and you can't be trusted."

That was that.

I decided to check out a few things for tomorrow. We're going to the 'superhero' exhibit at the Science Center tomorrow and I thought maybe we'd do a movie afterwards. We haven't seen wonder-kid Joseph for awhile, want tomorrow to be fun. I can fritter time away on the computer with the greatest of ease.

It seemed only seconds later when mom was back and he was finishing up his game on the computer. She asked him to step outside for a second and then she took the seat next to me.

"You are Dave Hingsburger, right?"

I said, "Yes," a little surprised but now understanding the look she'd given me. It was recognition.

"How did he do?"

"Pardon?"

"My son, how did he do?"

I understood her question immediately. I told her that he was quick to keep us all at a distance and that even though he thought my comment funny he didn't talk to me. I told her that I was amazed because most people I know with William's syndrome really can't stop talking given the slightest opportuntity.

She asked what I had said that was so funny. I blushed. I can you know. I told her that I'd made a joke about how scary she was.

She smiled and said, "I have to be scary sometimes. It's part of being mom."

Then she told me that she saw me speak when her son was just a baby. (A baby! He's almost a full grown man now. God, how old am I?") And she was determined that her boy would not be someone's victim, someone's statistic. She taught him from the time he could talk to not talk to strangers, not give out information and to tell her if anyone tried to break her rules.

I told her that I was impressed. She'd done a good job.

She thanked me for my work, for my book Just Say Know and for giving her ideas about how to keep her son safe. I almost cried.

As she left the room I heard her son say, "Mom, he's a stranger and you talked to him. You don't even know what kind of ice cream he likes."

She glaced back at me and smiled.

"Yes, I do. Any."

And laughed.

Truly scary, that woman, and I mean that in a good way.

Stripped

Snow flew.

For awhile I thought that my trip to Thunder Bay would be cancelled. But we managed to make our way through the snow, into the clouds and finally into sun. The flight was packed went without incident.

In the terminal my chair just died. The front wheel wasn't rolling anymore. It was tough. We finally got a rental car and went straight to a wheelchair repair place. At first I thought I might just buy a new chair. I'd been planning to anyways. When I asked about chairs, one of the staff, asked, loudly in a crowded store, about my finances and about being assessed for benefits. I know that I could get benefits but I needed the chair now. But I was stunned. Everyone looked at me, clearly waiting for me to answer.

Um, isn't that a little private?

Um, isn't that no one's business?

Why would it be ok for her to ask questions from a stranger that she'd not tell her friends. I was repulsed.

They fixed the chair, but only after I told them my name. Why did they need to know my name in order to fix the chair? When did my life become public in this manner.

On the way back to the hotel where the conference was held I saw a strip bar called 'private i's' that had gone out of business.

Well my 'I' is just fine and I refuse to have my privacy stripped away.

And I won't ever do that kind of thing to someone with a disability ever again.

Smile

We were waiting for the elevator. A small crowd had gathered and it was ... um ... diverse. It was an institution for people with mental illnesses and as such it was an 'interesting' crowd. One of the men waiting for the elevator fooled me. I thought he was some kind of a construction worker. He had on dusty workboots tied like day labourers tie them, jeans worn out by work not by gimmick, a work undershirt and a red check flannel shirt.

It was drag. Good drag, but drag.

We got on the elevator and it was crowded. He stood by the buttons just to my left and back a bit. I could hear him talk, joking to himself, must have been because no one else seemed to notice him at all. "Second floor, social sexual, you gotta smile and be polite if you are going to get out." Then he giggled.

Saying it once wasn't enough.

"You gotta smile and be polite if you are going to get out."

The door openned and he disappeared. It was only then that I noticed a very big man right in front of me. He looked like he could take us out easily, like to him Dirty Harry was a sissy. I thought to myself, "OK, big fella, you gotta smile and be polite if I am going to get out." He didn't catch my thoughts but he did move out of the way quickly and easily in that dainty way that large people often have of moving.

On the way out I was thinking about the workman-inmate guy. At first I thought, mockingly, about the simple solutions we teach people to deal with complex issues, complex lives. But then I thought that there was a kind of wisdom in those words.

Yeah, life's tough. But you gotta smile and be polite if you are going to get out.

He may have been 'crazy' in the eyes of the world, he may have been in there for some serious stuff, he may have had hours of therapy, but he's gonna be ok because he's got it figured. If the manages those two things he could end up in a job, in a relationship, in heaven. Man, that's the ticket.

You know it's been a hard few days for me. But I haven't tried to let people know about it. I just whined on my blog yesterday and let it out. That's it. For the rest of the time, I just tried to smile and be polite and got out when I could.

It works.

So next time someone with a disability asks me how to manage, I'm going to say .. Ya gotta smile and be polite ... 'cause it actually works.

I Had A Bad Day

What happened?

A couple of seconds ago I was a teenager who knew it all.

A couple of minutes ago I was a kid who couldn't wait to grow up.

How come back then I looked at adulthood as a piece of cake. Something to rush into. Why did they lie to me? Why did they tell me that when I grew up I'd have power and control? Be the master of my own destiny.

They didn't tell me that life was hard.

Really really hard.

They didn't tell me that life came at you fast.

That it's easy to lose balance.

It happened when I got home on Sunday. Checking the messages on the machine.

Wham!

I should have seen it coming. You know how when things are going a little too well, you gotta be careful, watch for the catch.

Well the catch caught me.

One phone call and it all came back.

A sense of inadequacy.

A realization that life's tasks will always be just a wee bit beyond me.

That it's possible for a fat man to bite off more than he can chew.

Damn.

Has this happened to you? Suddenly out of nowhere, when least expected, life throws you a curve and you feel just plain overwhelmed and under prepared? You wish you could climb under a blanket and hide from the world? You long for the days when you were filled with actual down deep hope?

Damn thricefold.

I want a bigger catcher's mitt.

I want warning before the pitch is thrown.

I want to believe again that I can, if not catch the ball, duck it.

Damn in the thousands.

Giving up seems like an option. Admitting defeat.

But hopelessness is a disability I impose on me.

And I choose not to impose it today.

Maybe tomorrow.

But not today.

Hopelessness is an option I'll always have if I don't use it.

And it's nice to have options.

So not today.