Fear

"So, what are you afraid of?" I asked him, curious what he would say. He'd lived a life unimaginable. Institutionalized young, incarcerated forever, finally free - to old to do little but breathe fresh air. Activity swirled around us, others busy with their lives paying no attention to the two of us, just sitting. He took a while to answer, I'm ok with that, I don't mind waiting. This was something I would have to learn.

Years ago a co-worker and I went out for lunch. We thought that we ought to be friends but we weren't. We had a social circle that overlapped, interests that both ran parallel and even occasionally intersected, but we had never managed that 'rhythm' that friendships have. So we went to lunch. Just lunch. It was horrid. Just awful. He was a slow talker. No ... not slow ... ssssslllllllooooooowwwwww. Frustration bubbled up in me. "Spit it out, just spit it out," was all I could think. My eyes were rolling around in my mind if not my head. I kept cutting into to finish his sentences. I could see frustration build in him too. All my friends, that's all of them, are quick talkers. We finished lunch and both said, "Let's not do this again." We were never enemies, nor did we dislike each other, but even so we avoided social situations.

So becoming a slow listener was a ... um ... journey. But finally the old man at the table was ready to answer. "I think I'm afraid I'll have to go back." He surprised me. Community living, for him at his age, wasn't much more than a room in a house and in many ways his life seemed smaller here than it had back on the large ward. "I like it here, I like having my own room," he continued. He liked being free.

This was a thoughtful old man, I realized, I asked him then, "Why do you think you'd have to go back?" This time his answer came more quickly, "Because they'll give up on the idea that we should live here and put us back there."

He was afraid that our committment didn't run deep enough. That we'd give up on the idea of community and that he'd end up back in the land of the long corridors.

He's one of our veterans. He always made me feel sad. That the 'idea' came a little to late for him. He knew, in his own way, that he was one of the powerless - one who's life was affected by what other people wrote on paper - what other people thought - one who's life could be changed by the stroke of a pen. I don't, I can't, remember his name. When getting ready to write this, I dug around and found my journal notes from our meeting, but his name is only recorded as "W". I used shorthand in the arrogence of youth - my memory would always keep the moment alive.

I was going to write something about Paige and George today but somehow, though I picture them both well, it was "W" that beckoned my memory. I don't know why. Paige, I remember too, of course, and Stanley - always. But I will save them for tomorrow, or maybe later this week.

Because today, "W" in Vancouver comes to mind. I wasn't scheduled to meet with him but he made it into my journal anyways. I was at the group home to consult regarding someone who lived with him. But "W" was there, sitting at the table, sipping on cooled coffee. I, being early, just sat with him. The question of fear had come up because the staff had just told a really funny story of getting in her car that morning to find spiders crawling up and down the driver's seat. She had exploded out of the car screaming like she'd seen the "devil himself". We'd all laughed and then, I just asked "W" about his fears.

He, then, having confided in me, asked me what I was afraid of, tit for tat.

I took my time. "W" was in no rush.

"Before I talked to you, I think I would have said, 'heights'. But now, I don't think that's the best answer."

His eyes asked the question, but he waited.

"I'm afraid that we'll give up on the idea - and people will have to go back."

He smiled, glad to be understood.

Farming

I saw him come into the restaurant. I was in a small airport sitting through a flight delay. Worry started tugging at my mind as the hours went by. Soon, I knew, the flight would be cancelled and I would be stuck for the night. The whole itinerary rested on me making this flight - tonight. The cafe was the typical type - burgers, fries and egg salad sandwiches. I chose to sit by the window so I could look out over the runways. I think the cobalt blue lights on airport runways are stunning. They cheered me. It was as if someone left a string of Christmas lights lying on the ground.

His task was simple. Wipe the table. Move to the next. He was so methodical. He carefully wiped each table, one after the other, and on each table he set the salt, pepper and napkin holder in a perfect symmetry. No pleasure showed in his face, only concentration, the desire to do the job right. I noticed the woman at the cash register watch him and her love reached out to support him through each movement. She nodded at each correct completion and tensed at each new table. It didn't take a genius to see her will him through the task as she had probably willed him through much of his life. He never glanced to her but I'm sure he felt her gaze.

In the middle row of the three in the restaurant sat a woman distractedly reading the newspaper, checking her phone for a message that wasn't coming and glacing out the window for the plane which had not yet arrived. She didn't see him but then he was standing there, right behind her. His eyes focused on the table. He saw the dishes that needed to be removed and a table that needed to be wiped. Indecision wafted over his face. He stood there. Lost.

I glanced to his mother. She had her arms wrapped round her, holding herself back. Her natural desire to help, to intercede, seemed captured by those arms. She did nothing. She waited. Then, suddenly, he moved. He stepped around the woman at the table and moved to the next table. She sighed and her relief almost undid her. She caught me looking and she said simply, "My son." I looked at her and said, "I know." We smiled at each other, then she was back to watching him.

The hardest thing to do - is wait - give over - stand aside. People never grow if they are constantly pruned - interfered with - assisted. He needed the chance to think things through. To make a decision. To figure it out for himself. His mother gave him those gifts. She didn't prompt - she let him think for himself. Her faith in him was shown by the time she gave him. She learned the most important thing that she needed to learn - "It's not about me, shut up."

When working with the self advocates from the Essex County Association for Community Living as they developed a "Bill of Rights" for service, they came up with one that was astounding. "The right to the extra five minutes we need to think." Self advocates made it clear that they knew that they needed a bit more time to process and wanted us to just 'shut up' and let them do it.

I'm glad I'm the grandchild of farmers. I learned that between the planting and the reaping is always the waiting - the watching - the trusting. The mother in the restaurant had planted a skill in her son and had the courage to give him the dignity of time to grow. And what do you know - he did.

Through The Door

Working on my blog this morning I came upon a response that I hadn't noticed. It was for the "Avenging Angels" post that I wrote some days ago. My first response was, "Great, someone responded." Anyone who has a blog will tell you that it can get disheartening if no one responds to posts. My second thought was, "WOW." In essense Sonja, the writer, was saying that, she had noticed an uncomfortable distain in my writing. Though she agreed that integration was the way to go that we had to remember that people who worked in the places of the past - institutions, special schools - often provided service with honour, and care, and gentleness. She hinted that we had to be careful at looking at yesterday from the vantage point of today.

I couldn't agree more. My experiences in working in two institutions, one small, one huge, left me with many impressions. But I have differing impressions now than I did then. When I first walked into Glendale in Victoria there were few community options. Words like 'integration' and 'inclusion' had been spoken but not realized. I was taken aback, to be sure, but mostly by the difference of those with disabilities. I had not been around people with disabilities, never having been exposed to that kind of difference, they truly seemed like 'them' not 'us'.

It was with pride that I described my job to others at the time. I felt that we were offering a real quality of care. Our desire was to provide real care and there were moments of real joy. I knew that the institution was a step up from what had been done in the past to people with disabilities and that there were those who fought and fought hard for places to care when the rest of society didn't. I was proud to be part of the heritage of caring.

There are people I remember from those days who stay with me. People who were some of the kindest and most caring that I have ever met. The stereotype of institutional staff just didn't apply to them. They brought compassion through the door with them and they insisted that we all act with kindness. I remember once sitting around with staff talking about the residents of the ward. We were imagining who they would be if they didn't have a disability. Who would be a carpenter, who would be a chef, who would be a womanizer, who would be a politician. It was fun. We listed each persons qualities and discussed who we thought they would have been.

Win, the supervisor, came in and listened for just a minute. Then she gave us all a lecture. How dare we speak that way of the people in her care. They were who they were, they were who they were intended to be. The conversation we were having suggested, to Win, that they were somehow 'lesser' than they would have been if they were born normal. That was an insult to who they were. If that's how we thought of them - as failed normal people, we should think about working elsewhere. This was a place that served people as they were, not as they would have been.

She turned on her heel and walked out the door. Sure, some of the staff gave the 'what's up with her' look. But her words hit me hard. I remember them clearly as if they were spoken yesterday. She was right. Win was an exceptional person the fact that she worked in an institution did not lessen who she was - the fact that she cared makes her exceptional.

Of course I have my regrets from those days, things that I would do differently now. But I also have regrets from my early days in community service. Though the regrets are painful, I'm glad of them. They prove to me that I'm still growing, still learning. I look back at what we've done, and more personally, what I've done - and wish I knew then what I'm only learning now. But I can say, for the most part, that my intentions have never changed. That I always wanted to be kind, always wanted to be part of the solution, always wanted to be deserving of the trust given to me.

So, as I write, and as I remember the past, please understand that I see the past for what it was - a misguided attempt to do something good. I want institution doors to close because people should not be jailed for the crime of difference. People belong at home. That's pretty much the long and short of it.

Thanks so much, Sonja, for the response, thanks for thinking enough about what I wrote to disagree with me and give me the opportunity to dig deeper into the thoughts that I have. Thanks to everyone who leaves a response, it encourages me and hopefully encourages dialogue. That's what I started this blog for.

The Utica 24

Twenty four women. Names lost to history. Changed the world. During the war years thousands upon thousands of men left their jobs in industry to take up arms for their country. Women left their kitchens and their children and came into industry. Rosie the Riveter became the symbol for what women could do. Women would be forever changed. It wasn't that industry had discovered women, it was that women discovered themselves. They did everything that men did, and often did it better.

In Utica, New York, the Utica Knitting Mill needed workers desperately. Women had come into the work force but there weren't enough of them. The knitting mill was important to the war effort and there was almost panic as they looked for hands to put to the task. In Utica was a home for the 'feeble minded'. An idea formed in someone's head.

24 women were offered the offered the opportunity to leave the grounds of the institution and move into a large house near the knitting mill. They were put to work in what is today called an enclave. They worked together. They worked as a team. They were told that if they worked hard, they could continue to live in the community - out of the institution. They were offered freedom. It was an opportunity that they would grasp with both hands.

Their productivity astounded everyone. Soon word got out. Feeble minded women acted with one mind and one spirit and came to work every day. They broke production records. They never took a sick day. They worked. And worked. And worked. Someone in New Zealand's Department of Mental Hygiene heard of the 24 women and laughed. He assumed that the women weren't 'real', that they were 'misdiagnosed' that they were carelessly categorized. He made the trip to Utica with psychologists to measure the minds of the women. He wanted to prove to himself and everyone else that what the miracle in Utica couldn't happen.

But a miracle had happened. 24 "feeble-minded moronic" women took the community by storm. He went back, this government official, to New Zealand and began asking whole new questions about what people with disabilities could do. He began thinking, for the first time, that maybe the community could benefit from the presence of all it's citizens. Thus began the movement toward community in New Zealand.

Because of 24 women. In Utica.

Years later as the mill was to close the 24 women were the last to be laid off. Not because of benevolence. Not because of pity. But because, to the end, they out performed and out produced the others working at the mill. First they beat the 'normal' women, then they beat the 'normal' men. It seemed that they got the taste of freedom and would lose it for nothing.

I found this story is a musty old book called, 'The Making of A Moron," by Niall Brennan published in 1953. I read it in University and then found it years later, how is it that the older you get the more interesting history becomes, from a bookseller on the internet.

I happened upon the story.

No one told me.

It was told in no class I took or training I attended.

We have our hero's in this field.

We just don't honour them.

But I thought of them the other day as we drove by Utica on the freeway. I saw the sign and they came to mind. I didn't know how to pay tribute to them.

This post today is my feeble attempt to honour women who's minds were anything but.

Being

I wonder if he knows.

Probably not.

He's bagging groceries. He looks up at the customer, smiles, then goes back to work. Not a word was spoken. But a sermon was given.

I'm in one of the motorized wheelchairs provided by the "Stop and Shop" grocery store and he caught my eye as I rounded an aisle. There was an intensity about how he was bagging groceries that I noticed.

But what I really noticed was that he had Down Syndrome. That he was at work. That he didn't even notice that he was making a political statement. That he was proving myths wrong. That he was picking up stereotypes and smashing them to the ground.

I wonder if anyone has told him.

Probably not.

He's Rosa Parks. He's Emily Pankhurst. He's Harvey Milk.

If God is "I AM" then this guy's, "HE IS". And he is ... and he is brilliantly.

The sheer act of being. Being there. Being present. Being. It's an act of courage. The stares, I'm sure he's noticed. The nudges, I'm sure he's noticed. But he's there. He's working. He's being.

We closed the institutions. You and I. But he is doing something much greater. He's integrating the community. He's making the way possible for others. He's cutting the path.

I wonder if anyone has told him.

Probably not.

But I want him to know, really know, that people like me ... and maybe you ... are really really proud of him.

A Tale of Two Dads

He seemed a bit nervous at first. He was at our book table at the NADD conference in Columbus scanning the table. He spotted the two books we have on masturbation and I swear he blanched a bit. I smiled inwardly. He didn't pick up anything, he just stood there looking. I asked him if he needed any help. He sighed. Yes, he wanted help. He wasn't at the NADD conference, he was attending the conference for property managers in another part of the hotel. He said that at lunch he overheard people at other tables talking about bullying and teasing of disabled kids. Nothing he said could have made me happier. That was the subject of my morning keynote. Speakers like knowing that they've sparked conversation.

I told him that the book, the aRe word, was sold out. He said that what he was looking for was a book for kids about bullying and teasing especially of kids with disabilities. He went on to explain that he had two kids who were attending the local school. He said that when he heard the conversations at the other tables he got worried that his kids one day might be confronted with someone with a disability and might be tempted to discriminate at best or bully at worst. He said that there was no way he wanted his kids to behave that way. I showed him one of our children's books that had characters with disabilities in it and was about both teasing and tolerance. He actually asked, "Can I buy this even if I'm not at this conference." Ummm, yes. He paid for the book, said thanks and then headed back to his conference.

The world just may get better.

And so did the day.

About an hour later another young man (to me 40 is young) came and asked if he could tell me a story about his two boys. Of course, public speakers and blog writers never turn that opportunity down. His two boys are typical brothers with a difference. One has an intellectual disability. He says that the kids fight as all kids do but that he has to watch them because the kid with the disability can really take the kid without one. As it turned out both boys were being bullied at school.

As a dad, he did all that he could do, including talking to the school. The school was aware of the problem but did nothing about it. (To schools 'being aware' in their minds is often equivilent to doing something about it.) One day his typical kid asked his father's permission to take on the bully and fight him if necessary. Dad didn't like the idea but said, "If that's what you have to do to make it stop, go ahead." Well, the kid took on the bully and the bullying stopped. Dad just assumed that the bullying stopped for both kids but he was wrong.

A few weeks later he got the sense that something was bothering his disabled son so he asked and was told that he was still being bullied. He asked his son why he didn't take on the bully like his brother did, if he could beat up his brother and the brother could beat up the bully, it seemed logical. His boy said that he wouldn't hit the other kid because he wouldn't his someone with a disability. The dad was taken aback and asked if the bully was another kid in the special classes. His son said, "No, he has a disability with his heart." Dad said, "You mean he has heart problems." His son looked at him and said, "He doesn't know how to love."

That was the disability that his son felt sorry for. That the only disability that can cripple. That's the only disability that is deserving of pity.

Good parents. Good kids. Good future.

Some equations are truly simple.

News Alert

Please visit

http://www.theaustralian.news.com.au/story/0,20867,20706992-23289,00.html

to read something truly frightening.

Anyone with ideas about how to respond, please post.

Left Hook

OK OK OK, I was coming into the hotel, see, and heading right up to the computer room to try and post something on blogger. Rounding the corner I saw a very pretty, very blond woman sitting at the computer desk and I was disappointed that I'd have to wait. Then I noticed that she was using a laptop, not the guest terminal. So I asked her if she would mind if I used the hotel terminal. She said, "Sure" and got up to give me the computer chair and moved slid her laptop further down the desk. She got a chair and sat down. I waved to Joe as he headed up to the room.

She slammed at that computer like a pro. She clearly was comfortable with a keyboard. I did wonder, because I'm catty, how women can type with nails that long. But type she could. She kept glancing at me, I think she was hoping that I'd just check emails and leave. Little did she know that she was looking at a blogger-guy who had a post to clean up and get ready.

Finally she grabbed a cellphone and made a quick call. She talked to someone using computer terms about a website. Finally, with one appraising look at me, she went ahead. There were several websites she wanted linked to ... there was one in Florida for female escorts (there is a euphemism if I ever heard one) then a fantasy one and a leather one. She actually talked about how feathers were 'in' and cuffs were 'out' so some of the photos would have to be changed. It was like she had forgotten that I was there because she was so in to the conversation and into the web site she was building. She was a business woman doing business.

I just stared at the computer screen thinking, "Oh, my God, she's a hooker." Tee hee. Giggle. I'm 53 years old and I work at the respected end of the sex trade and I still turn into an adolescent at times like this. I looked at the computer screen but I was really just listening to her call. My face looked serious but I really wanted to let out a guffaw. Off the phone now she was back at the keyboard. I got bored and then I checked the email and found that there was one that Joe needed to know about so I picked up the phone and called him to come down. She heard me make the call, rolled her eyes, and folded up her laptop and left the business office.

As I waited for Joe to come down I thought of the thousands of people with disabilities that I have taught about sexuality. After every class where I've taught body parts ... you know the drill ... ... testicles ... vulva ... breasts ... I note how the class is uncomfortable and they get silly giggling and breaking tension with humour. It always upset me that adults would be so uncomfortable with something so benign. I saw it as a result of their oppression as disabled people.

So Joe arrived and before we looked at the serious email, I said, "OK OK OK Do you remember the woman who was in here when I got here?" Joe nodded and said, "The pretty blond woman on the lap top?" I started laughing and he looked confused, "Oh, yeah I imagine that she's really good on a lap top ..." he looked confused. "Dancing." I explained. When he didn't get my little joke I said like a frat boy on his first day in the big city, "She was a hooker!!"

Joe an I both giggled as I told him about the feathers and cuffs and escorts in Florida. Giggle, giggle, giggle.

Ummm. Maybe I'm not so sophisticated and disabled people aren't so abnormal. I'm never, ever going to make that assumption again.

Looking Beyond

I wanted to go for a walk. I can't walk far and I really can't stand without holding on to something, but I still like to stretch my legs every now and then. We went to Giant Eagle here in Columbus and did some light grocery shopping. I wanted a sugar free pie for dessert and some sugar free hot chocolate because we were out. Joe, being Joe, wanted cold beer and some toothpaste. (Not as much of a contradiction as you might first think.)

As we approched the line up Joe handed me keys without my asking for them. I just can't do line ups without falling over. So it was off to the car. I looked around, the view from disabled parking really is better than from the other stalls - hah. When Joe got in the car he was grinning. I asked what had happened. He said that he was checked out by a chubby woman who eyed one of the pies.

"Looks good, hey," Joe said.

She said, "I'm imagining it with a bit of ice cream, or maybe whipped cream. I'm looking beyond the pie." Joe and I both laughed.

I remembered working in a group home with a woman with a disability who had wanted to learn to bake. We had to make several pies for a bake sale. I was just the watcher / washer as pastry to me is just a miracle. Loaves and fishes ... please ... flaky pastry now THAT'S divine. We had four or five done when the other residents came home from an outing. She looked at me and said, with no hint of humour, "Now comes the most important part."

I asked her what that was.

"You've got to keep your eyes on the pies."

And you know.

In this life.

You truly do.

Avenging Angels

Since I was diagnosed with diabetes I've been off the junk food. Candy bars ... I can joke about them like I did in the Halloween post but I don't eat them. I've discovered the world of sugar free, a fairly narrow world that is too. So, when I get the urge for junk, I can't buy food. So, I buy magazines. You've all seen them in the grocery store line up. They've got the coolest headlines too. My favourite was one about how aliens inhabit Cher's body on a rent to own basis. But this week, the Sun's headlines screamed, "Shocking prophecy will come true this year! AVENGING ANGELS DESTROY ALL OUR ENEMIES." Then in a little red circle are the words, "The story every PATRIOTIC AMERICAN must read."

Well, I'm no American, but I fell into the "must read" category. Try as I might, at first, I couldn't find the story between the covers. I read all about how glass grew out of this kids head and about a magic troll that makes lottery tickets winners, but no quotes from G. W. Bush or the Pope as promised on the cover. Oh, well. Then suddenly I found it, it was obscured because of being placed next to a full page that had the headline, "SEX - HARDNESS - ENDURANCE - PERFORMANCE." Frankly, what could compete? The article was completely frightening as it described the angel Metatron (I'm truly not kidding) with a bloodthirsty agenda. Whew.

So I thought about this idea of avenging angels saving us all. And frankly, I don't like it. Not that I don't have an enemy or two I wouldn't mind being smote, or smited, or however you conjugate 'to smite'. Having angels do it is just way to, I don't know, easy. Lazy, almost. Besides, I hate cleaning bird droppings off my windshield, I can't imagine scraping off Angel Droppings. Ugh.

I think I first cottoned on to this when I was in University. I was part of an outing to a 'special school' for 'special kids' using 'special education'. When we got there it the recess bell had just rung and there was absolute pandemonium in the hallway. There was one little boy, cute as a button, down on one knee working so hard to tie his shoe. Concentration was all over his face and you could almost see the task analysis used to teach him as he worked through the steps. Then he'd get jostled by another kid and have to start all over again. Soon he was the only kid left in the hallway. In the quiet, he attempted again.

One of my classmates did what we all wanted to do. She leaned down to him and gently said, "Here, let me help you with that." The kid didn't even look up from what he was doing and said, clearly through ill formed words, "No, I can do it myself." And in a few minutes he proved his words true.

I've seen that scene over and over again through the years, helpful hands rejected as hands attached to slow learners swatted them away. "I can do it myself." Frankly, I've had my hands swatted away as I reached to help where no help was wanted, or indeed needed. It's tough enough to have a disabilty but to be required to hand over the ability you do have to a 'helping other' is demeaning. I understand that now, in a wheelchair when I'm out in public, I get offers of help from the oddest assortment of people. I know that they are kindly meant but I don't want help (unless I ask for it). And, in truth, I find the unsolicited offers somewhat offensive. "I can do it myself." Swat.

I can see how some disabled people can get lazy. They learn it's just easier to let someone else do it for them. But then, I see the same thing in society today. Let someone else take care of the mess that's been made.

But I don't want avenging angels fixing things. Maybe I'm naive, or maybe after a year in a wheelchair, I've finally caught that little boy's resolve.

"We can do it ourselves."

It might take time. It might take prayer. It might take courage and resolve. It might take changing. It might take steadfastness. It will surely take patience.

But.

"We can do it ourselves."

For surely, peace made is more powerful and more lasting than peace imposed.

Yep.

"We can do it ourselves."

Does anyone know if ebay sells giant angel swatters?

It Doesn't Cost

We inched toward the border, typical for a Friday night Buffalo crossing. It seemed to take forever, but with the world the way it is you kind of expect the occasional inconvienience. When we finally pulled up to the gate the border guard gave us a great big smile and asked about our day. We responded, carefully like his friendliness was a trap, "Fine." He asked for our identification and then chatted with us as he punched our names into the computer. He sounded like a guy at a bar shooting the breeze with a couple of strangers. When we were done he wished us a pleasant evening and we drove away.

"What's with him?" We each asked each other at the same time.

I sat in court day after day listening to testamony. It was the first time that I was involved in a case that landed in court. She had told of abuse, no tell it like it was, she reported that a staff had d her. The police had listened and investigated. Now came the trial. It was to be a big day. Several of the clients who lived in the same group home were going to testify as to the staff's behaviour on that day. A lot hung on their testimony. Adopting a Mount Olympus attitude, the judge hid behind his robes and a large mustache. He came in, we stood, he sat, we sat. That's power.

Manny was the first to testify. He was clearly excited about the whole thing, he waved at everyone he knew in the courtroom. I saw the Crown shudder as she saw all the preparation going down the drain. Manny took his place in the stand and then turned to the judge and stuck out his hand saying, "Hi, Judge!" The judge waved him away. Manny, who had not yet sworn to tell the truth, did anyways, "That's rude." Then he gave the judge another chance and stuck his had out again saying, "Hi, Judge."

They stared at each other for a few seconds and I think everyone in the courtroom stopped breathing. The judge blinked and leaned forward and shook Manny's hand. Manny smiled and said, "It's better if everyone is nice."

The judge had a "What's with him" look on his face.

Tonight at the hotel I was checking in. There was a mixup about the room. At first it looked like they wouldn't be able to honour my request for an accessible room. I was upset. My dog had died. I got a email from a friend that came out of the blue. My emotions were all over the map. I went to autopilot and prepared to let loose Meanie Me. But suddenly, I saw the border guard's smile. Manny's voice popped into my head, "It's better if everyone is nice."

I smiled a border guard smile. She smiled back and then told me that everything was fine and I'd be getting the right room. I offered her my hand to shake, which she did.

Out of the corner of my eye I saw the look she gave her co-worker, "What's with him."

You know what, it's not only better if everyone is nice -- it's easier too. Besides I'm striving to become the person my dog thought I was.

(Readers: Sorry for the lateness of this post, I had difficulty getting blogger to post for me today, I tried several times. Too, I have reset the controls so that anyone can leave a response. I didn't know there were options until I tried this morning to get blogger to work.)

Adieu

This morning Eric was having trouble with his front legs. It was almost comic watching him walk on a linoleum floor, looking like a two year old on skates. His eyes still burned with intelligence as he figured out which treat was coming. Then he took a long ride. Down to my office where I said goodbye to him and then he went up to Barrie with Joe to get the banking done and then over to Angus where he got to say goodbye to Sue (who has cared for him for several years when we were on the road). Now, it's over.

It doesn't matter that his legs don't work anymore.

Cause I know. Deep in my heart, I know - he now has wings.

Let It Be

"What are some things that make you sad?" This is a question that I ask in my abuse prevention class for people with disabilities. They bring out a laundry list of what it is to be human and to live in an imperfect world. "My mother died," says one woman with Down Syndrome, her face a study of sadness. "My friend moved away," says a young guy, on the shaving side of his teens. "The news," says another guy and everyone nods.

Life hurts sometimes.

I hurt now.

That's the cost of risk. Of daring to be human, to be in relationship, to love. The depth of my grief is equal to the heights of my joys. I don't want to give either up. I have felt sorrow almost break me, but I've felt joy overtake me. It's a rough ride through life. I don't get frightened at airplane turbulence because it's nothing compared to living a day on the ground.

Funnily, we want to protect people with disabilites from pain. From risk. From real life. People with disabilities have been disallowed to attend their parents funerals (because it will upset them) or disallowed to try something new (because they may fail). Being bound in chains of feather pillows is still being bound! In their wonderful book about people with intellectual disabilities dealing with grief called "Ya Got People," Caroyln Bowling and Jeffery Wilder take a disability rights approach to grief. They are passionate in their belief that people with disabilites have a right to grief, feel loss, and in many ways - live the life they are meant to live.

A woman once told me that she would often bring her dog to work at a group home and that the dog was wildly loved by all the people with disabilities in the house. When the dog was hit by a car she worried about how people would take it but felt that they should know. She went and patiently explained that the dog had been hit by a car and had died as a result of injuries. They were all sad but the guy that she worried about the most didn't seem all that upset about it. The following week when she visited the home he rushed out and asked, "Where's the dog?" She again explained that he had died. He scrunched up his face and said, "He just keeps on doing that doesn't he?" and went on his way.

He didn't get it. Not because he had a disability, not because he couldn't understand, but because he had been kept separate from all experiences of loss. He had been protected. This isn't "ignorance is bliss", this is ignorance as control. This is just unfair. He lost the opportunity to grieve, to say goodbye - instead the wound stayed fresh every time she came with the dog he asked about the dog. When she wanted to teach him about the finality of death people worried that he would be 'upset'. Ummm, you're supposed to be upset. It's NORMAL for heaven's sake. I wish I had met Carolyn and Jeffery back when I had this conversation, I would have known better how to advise the woman telling me the story.

I don't want to be protected from my feelings of grief. I don't want to have some pill take away the sense of loss. I want to live through this, I want my grief to be part of the memory of love and companionship that we shared. It's OK to hurt. And I'm a modern guy, it's ok to cry.

Life is hard, sure, but it's also has moments of joy, grace and love.

I love sweet and sour (veggie) chicken balls. I also love the sweet and sour life I'm living.

So here's to love, pain and the whole damn thing. Here's to lives lived, hearts broken, tears shed, giggles giggled, love shared, secrets whispered ... here's to all of us living all of life.

Requiem For Our Eric

He's sleeping beside me now. It's awful, his sense of trust in me is deep - I feel it in his peacefulness. But I know. Friday at 2 pm, the vet will come to the house and Eric will die. The idea astonshes me. A life without my dog. He did well for a few days after we came home but now his breathing has become laboured and life has become arduous for him. Last night, for the first time in 16 years, he chose not to sleep on the bed. It has been hard for him to jump up but Joe lifted him gently on to the pillow that he's slept on all these years. But last night he came beside me on the bed and looked up at me, he let me pet him and then he simply lay down. He didn't want to even try.

I understand. I'm old. I get tired like that too. There are days I don't want to even try either. At two or three in the morning we were both awoken by the sound of Eric breathing. It was hard for him to simply pull air in and out. I turned the light on to see him and he didn't wake. He just slept. Peacefully. Like he will, forever, in only a few hours from now.

We, Joe and I decided, that we would wait until Friday. This would give us time to spoil him unstintingly. Forget what's good for him, he's getting what he likes. Like me, he's a sugar boy. He loves all treats, of course, he's a dog. But when he's got sugar in his mouth his eyes go big and it's like he can't believe how good it is. Yesterday he downed 20 Timbits. Today, he'll get cheesecake. If he wants it, he can have it. He's earned it.

He cared for me through two life threatening illnesses.
He stayed with Joe, supporting him all the hours I was in the hospital.

He listened to me as I cried my frustrations out to him.
He was Joe's constant companion on car rides and walks around the property.

He stood steadfast when I needed a firm anchor.
His heart was big enough to love us two as one.

So, let him eat cake. He's enjoying the food but you can tell he knows. Always a social animal, he spends most of his time - when not licking icing off his face - sleeping by the door, or outside on the deck. He comes in to be petted, but only a little. He is withdrawing from us - like while he's still here, he wants to prepare us for the emptiness.

And it frightens me. Sometimes when he's been out of the room for an hour - something he has never done before. I call to him, panic filling my voice, and he comes. He pads up beside me and gives me his head to scratch. But he looks at me like he's saying, please Dave, let me go.

And I will.

Friday at 2.

Because I love him.

Because we both love him.

Lucky

I arrived at work this morning and, as always, I was in a rush. The line up at Tim Horton's drive through was 20 cars long but we waited. The traffic report on the radio predicted an easy drive down the 400, but in the real world we never hit anywhere near the speed limit for most the way down. So by the time I got to the office, I had to pee, I had to get ready for a meeting ... damn it, I was in a HURRY. Our elevator moves at the pace of a bureaucrat in a rush -- you can feel yourself age as it ascends and decends.

The bong sound let me know that it had arrived and I stepped on with a woman with a disability who was riding up to the second floor to pick something up that was needed for the day programme on the main floor. The door closed with the speed of a glacier racing for the equator and we began our long ride up. I didn't want to just ride in silence so, not recognizing the young woman, I asked her what she did at the day programme. She told me that she answered phones and worked in the office. Then she explained that she had to go upstairs to get something that she needed for her work.

We were quiet for a second and then I smiled at her and said, "This is the slowest elevator in Toronto!" She smiled and then agreed.

"We're lucky it's this slow," she said smiling back at me.

I feel very lucky about many things, but this elevator isn't one of them so I said, "Why are we lucky?"

She looked confused that I didn't get it so she said, slowly, "Because people with wheelchairs use this elevator."

As someone who uses a wheelchair part time, I still didn't understand. "Why is that lucky for them?"

"Because," she said like she was talking to another dumb staff who didn't get it, "then they don't have to rush to get in, it goes slow so they can relax."

"Oh," I said.

And relaxed.

BOO!!

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

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

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

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

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

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

His answer was swift.

"Staff faces lie."

"What?" I asked.

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

Hmmmm. Who's disabled in this picture.

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

ME!!

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

BOO!

Laura Hingsburger

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

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

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

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

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

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

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

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

I was one of them.

Pray Tell

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

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

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

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

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

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

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

She didn't find that funny.

Walking Robson

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

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

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

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

Damn.

I meant those words.

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

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

Fine.

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

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

Take that Vancouver.

Comes The Dawn

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

Right now, I'm feeling hopeful.

Like the future is bright.

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

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

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

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

Right now, I'm feeling hopeful.

I've just met the future.

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