Tagged

I have been tagged!

Jemma Brown of diaryofamonkey.blogspot.com tagged me on yesterday's post. I haven't heard of blogger tag and was surprised to be 'it'. The rules, yes there are rules for everything ...

Here's the rules.

1. Let others know who tagged you.

2. Players start with 8 random facts about themselves.

3. Those who are tagged should post these rules and their 8 random facts.

4. Players should tag 8 other people and notify them they have been tagged.

So I have to come up with 8 random facts about myself. Things I haven't written about before, little quirks of my nature. So, here goes.

1. I hate and abhor chain letters, with their flagrant promises of riches and their astounding threats of death and dismemberment. It seems to me to be a mixture of the worst of behaviour therapy. Do this and get that. Don't do this and really get that. I never forward them and then feel a vague sense of dis-ease for the next few days. The same dis-ease I see in other's over promised and frequently punished who live under the care of others.

2. I absolutely love the Big Apple. No, not New York City, but the Big Apple that's just off exit 497 on the 401 near Prudy Corners. For those unlucky enough to never have stopped there, the Big Apple is just that, a giant several story building in the shape of an apple. We've stopped there regularly for years and it wasn't until I was in a wheelchair that I realized what a wonderful place it was. Though there's a very long ramp up and in, it's quite accessible and they make the second best sugar free apple pie in all of Christendom.

3. Every night when I go to bed I get a pang of sorrow for the loss of my sweet dog Eric who used to start every night out sleeping on the pillow between us. He wasn't a small lap dog but a medium sized mutt who would occasionally rest his chin on my shoulder and snore. I can't help it but every single night I go to bed I look at his pillow with tears in my eyes.

4. We go to the movies at least once a week and I tuck into a bag of popcorn and dive into the plot. I love escaping my life and entering into someone else's reality for just a couple of hours. Movies at home on DVD are just not the same to me. I need to be in the darkened room in front of the big screen. I like the big action movies and the small intimate movies. Give me a story and people I can care about and I'm the best audience alive.

5. The hardest thing I ever had to do at work was write a report documenting abuse. I had to fill in a form, marking on a line drawing of a body where the bruises were and I had to actually measure the marks. The largest was, I still remember 6 x 4 inches. I vowed that day that I would work towards a day where vulnerable people were no longer hurt. This memory still carries me in the work I do today.

6. The easiest day I ever had at work was when one of the guys I was counselling asked me to be his best man at his wedding. We talked and laughed that day and I was astounded at how full I could be of joy for another. He grew up in an institution and never thought he'd see the day that he would marry. His family said they wouldn't attend or support the marriage and I knew that I was 3rd choice after his two brothers. But it didn't matter. It was the most relaxed few moments I've ever had with someone in my care.

7. I am terribly fond of sunflowers. I like them in all forms. The huge fields of sunflowers we used to see near our home in Quebec when we lived there. The small sunflower I have on my desk right now. I actually stop, occasionally, and just look at it. It's beautiful. It manages to reach up to the sun, track it's progress, and be absolutely silent - as if in awe - of what it worships. I'd kind of like to be like that.

8. For some reason I can't explain, I find Christmas wrapping paper in England to be far superior in design to our own here in Canada and the United States. I buy vast volumes of it every year and we haul it back through customs. It feels weird to explain to a customs agent that I'm bring back 50 dollars worth of wrapping paper. But the pitying look I get from the agent is worth the cost of the paper. Joe says that we have enough paper to last us until Christmas 2046. What does he know?

9. I pray daily, and often. I never ever lecture without praying first. I know this bothers many, some because they have no faith and others who believe I have no right to faith. But it's no-one else's business. I find that prayer centers me, connects me, and confirms me. Prayer is like food for my soul. It matters to me.

10. Oh, my gosh, I just now realized that it was only supposed to be 8 ... so I'll stop. I'm so used to lists of 10. So ignore a couple of these and you'll have your 8.

Now the hard part. I'm supposed to tag 8 other people and I'm not going to do that. It's a little 'chain letter'ish to me and I don't want to impose this on anyone else. Please don't misunderstand me, I enjoyed being tagged and enjoyed writing this list, but others may not. So, here's what I'm going to do. I unoffically tag all other bloggers who read this list. I'd like you to play if you want and just put your blog address in the responses. Then we can all come visit you and read your list.

It's fiddling with the rules.

But ain't that what rules are for?

Fat Award

When I started writing 'Chewing the Fat' I made a few decisions about what I would and would not write about. There are, of course, some boundaries about my private life that I would never cross. But I also didn't want to use the blog as a means of flogging my books or having the blog become a promotional tool of Diverse City Press - I'm guessing that just saying that here is breaking that rule, but that is not my intent. So I decided that I wouldn't try to push my taste on anyone and promote anything other than a discussion about disability issues and disability rights.

Then yesterday I was popping around the Ouch website (this isn't product placement blog style, it's part of the story, really) and I found an old article about the frustrations about getting some good disability themed films out into the public eye. Apparently distributers aren't real interested in many smaller films that have disability as a theme and these films disappear quite quickly.

They mentioned two films, "Cloud Cuckoo Land" and "Inside I'm Dancing". I love films so I looked them up, figuring maybe to buy them on Amazon. They didn't have the dvd of either so I googled them and was surprised to find that "Inside I'm Dancing" was renamed "Rory O'Shea was here" for it's North American distribution on DVD. Cuckoo Land doesn't seem to have made it onto dvd that I could find.

But Rory O'Shea, I own that dvd and right now it's sitting on the piano right by the dvd player. It is simply, to my mind, the best disability film I have ever seen. I didn't realize, until reading Ouch, that the film has struggled to find an audience. So, I'm going to break all my own rules and flat out promote the film.

Rory is a must see. It's the story of a friendship between two young men with disabilities but it's also a tribute to community living and to freedom. It makes every point it needs to about the virtue of independance and the need to break free from institutional care. The film never, ever, preaches - the story tells itself and it's only afterwards, upon reflection, that the realization that you've just seen a movie length PSA about dignity, risk and friendship. The story is alternately funny and painful and then ultimately liberating. The acting is astounding and though I typically hate portrayals of disability by non-disabled actors, I'm giving that complaint a pass here.

So please forgive me for using my blog in this manner but I think I'm going to do this occasionally because I think that the disability community is enriched by art and by storytelling. I think that we become more whole in the presence of art. So, if you've a mind to ... give Rory a shot. Reward those who dare to tell the truth in film, in books or in the blogosphere.

Rory O'Shea Was Here - Chewing The Fat's first award good storytelling and positive portrayal of disability.

Plunging In

I needed to take a plunger to my heart, it gets bunged up like an old toilet (there's a pretty image for you) and needs to have old gunk forced out and flushed away. That's how I entered into the weekend. I was tired. My heart was clogged. I knew that this week when I was doing a consultation with a pair of really caring staff and a man with a disability who did constant self injury to his self esteem. After meeting them, and meeting him, I was able to give a few ideas for what to do next along with my absolute belief that there was a real hope for his future. One of the staff, cried.

That's usually enough to set me off, but while I was moved, I felt very distant from her feelings. It was an honour to be with them, they cared so much. And it was a privilege to listen to his dreams, he'd handed them to me gently. But deep inside I just wanted them to leave so the next people could come it. It was then I knew that I had some work to do because it was just work that I was doing. I wasn't just going through the motions, but I had lost the sense of emotion that makes things really matter to me.

I remember once talking to a parent and she looked at me, lost, and said, "I just get so tired of caring that sometimes I just stop. Things that matter, don't. It's like my heart gets all stopped up." It was then that the image of the toilet and the plunger first came into my head. And it worked for me. I asked her what she did when things got like that. I knew that she had precious little relief, a single mother, a severely disabled child, a nasty school board, it was a tough go for her. She said, "I take breaks," and pointed to her temple "up here."

That's advice that I have followed ever since. Taking breaks of time when 'up here' is still busy with work, with worry, with future, with agenda, with meetings, with unwritten reports, with undone consultations, with unfinished manuscripts, just doesn't work. I knew, this weekend, that I needed the a bit of space. So, I watched the birds on the feeder. We have thousands of birds dine with us daily. They're beautiful. So, I watched hours of 'Upstairs, Downstairs' and got caught up with Rose and the gang downstairs. So, I shopped for the makings of diabetic banana cream pie. So, we canned 5 jars of home made chili.

Then, at about 6 in the evening. I felt a renewed energy. Taking a plunger to my heart I pushed the gunk through and suddenly felt ready again. I knew that night that everything inside was working again. I thought of that staff, the one who cried over the need of her client. Suddenly I felt such a gratitude that there are those who are paid to care that actually do. Suddenly I felt, again, that rush of desire to be back in, to do it again.

I don't get burned out.

I get stopped up.

Thankfully everyone has a plunger.

Flush!

Qualities

Tomorrow I am going to be interviewed by a young researcher who is doing a study on 'favourable attributes in care providers'. I've had this in my book for a couple of weeks but forgot about it until this morning when I was getting things together to go with me to the office in the morning. My day book was under a huge box of books that I've got to haul in tomorrow. We are beginning a book club at Vita, 20 staff are going to read 'The Speed of Dark' and then we'll all get together, on work time, to discuss the disability themes in the book. It's an attempt to make a large organization feel smaller, more intimate and more interactive - and at the same time address issues about disability that are profound. Good idea, no?

Well, under the box was a reminder note that I had the interview tomorrow. Many people think, from watching me present, that I'm an 'off the cuff' kind of guy. Nothing can be further from the truth, I think through pretty much everything I say and do. As a shy person, it makes me feel more confident when I have really thought about what I'm going to say.

As I've gotten older, my sense of what it takes to be a good parent, a good staff, has shifted. Once I would have said, 'compassion' or 'patience' or 'stillness'. And while I think those are important and I look for them in interviews, I don't think that any of them are paramount. In fact, each of them, alone, can do damage. Compassion can smother, patience morphs into laziness, stillness transitions into boredom. So I want to be ready for her tomorrow and I began to dig through the stuff in my briefcase.

Several years ago I had a group of self advocates do a 'list' of what they wanted in a care providers. I've kept the list all these years. But, I stopped. I'll give her the list, but it's cheating to use that as my answer. She's come to me for an opinion and I need to give her mine. So, I sat in the still quiet of the early morning to think about it. So, here's what I'm going to say.

I think that to be successful in supporting someone with a disability, as a parent, as a staff, one needs a number of attributes but chief amongst them is a sense of fair play. A sense that people with disabilities deserve just as much a shot at personal happiness and fulfillment as anyone else. As sense of outrage when the world places obstacles in front of someone with a disability that it doesn't place in front of others. There must be a sense that what's good for me needs to be available to you.

Too many parents forbid their children the right of relationship, marriage, sexuality under the guise of protection. Too many agencies forbid those in care the right of risk, of opportunity, of dreaming under fear of liability. Too many people forget that our power makes our decisions suspect and our motives questionable. We are not here to be forbidders, our goal is growth - with all that it entails. A sense of 'fair play' ensures that we always step back and think about who we are and why we are doing what we are doing. It makes us 'bitch slap' ourselves when we get a tad out of control.

So, I think that's what I'm going to say.

But the reason for this post is -- what do you think? I've got today to think about it and you as a resource. I'm going into that interview tomorrow with a list from self advocates, I wouldn't mind a list from the blog, if it ain't to much to ask.

Opinions?

OK, For Now

I'm happy right now. Content.

Occasionally I get in these little bubbles of time when I feel that everythings going to be ok ... that I'm doing ok.

There are several things contributing to this moment. First I'm on the brink of my first weekend in a long time with nothing on, nothing doing, nothing expected. No company. No travel. No tasks waiting to be done. All week I've been desperate to get to Friday afternoon. To begin two absolutely free days. Driving home from work Joe said, "How's about we go up to Collingwood for lunch tomorrow?"

"What an absolutley dreadful idea," I thought. Getting in the car and going somewhere didn't interest me in the least. But I smiled and nodded. It is, after all, his weekend too. After getting the mail Joe said, "You didn't seem all that taken with the idea of going to Collingwood for lunch." I told him that I was kind of hoping that we'd just be at home, maybe go into a movie, but mostly just sit around and be alone, at home. That was very cool with him. "Thanks."

But that's not all. I'd just finished teaching a four day class. Every summer I teach two summer school classes. The first on dealing with problem behaviour, the second - starting next week - on understanding sexuality and disability. There were some really, really, nice people in the class this summer. There always are. The thing about summer school is I get to spend some time with those attending, unlike lecturing on the road where it's in and out, and every summer I'm so impressed with the depth of kindness and caring in this field.

I had the feeling that many were leaving with new ideas and new inspiration for working with people with disabilities. A couple had alread tried some new ideas and were feeling buzzed about what they were doing again. They looked proud to be getting their certificates at the end of the four days. I felt a warm calm settle inside of me, wrap it's fingers around the fear that knaws at me daily. It was a nice feeling.

Then I got home and got a note from a woman with a disability who had attended a class I taught some while back. She wrote me a few days after that and described herself as, "I'm the shy one from your class." I remembered her immediately. Try as I might during the class, I couldn't get her to come up to the front for a role play, or to answer a question. I could tell she wanted to but I could tell that she was held back by some invisible inner force, and inner voice that told her to 'sit down,' 'be quiet,' 'shut up.'

Her note to me had just been a short thank you note. She had enjoyed the day. She thought I was funny. I was pleased. In the note she asked me for something. I wrote her back and told her that it would take me a couple of days to get what she wanted and that if she didn't have it by Sunday, last, to write and nag me for it. I tend to forget email promises in ways I don't forget telephone promises.

There the note was in my email box. A note reminding me to send her what she needed from me. That note was way better than any thank you. It was a demonstration of assertion. It was a practical result of what I had tried to teach. Self esteem. Discovering a voice and using it. I was tired but I immediately set about finding what she wanted and sending it to her. It was done in about half an hour.

It's all good.

I spend my days, like we all do, working towards a better tomorrow. A brighter future. I spend my energy fighting fights that shouldn't need to be fought. Arguing for things that should be self evident. Frustrated with caring systems that don't seem to care. Yada. Yada. Yada.

But today. It's good.

I'm going to enjoy the good for a couple of days.

I'm not going to think of the things I've got to do next week. About oppression or prejudice or ... stop it!

It's good.

Today.

Good.

300 dollars

Finally someone gets a ticket for wrongly parking in a disabled spot.

Wait, that's my car.

I can see the blue badge from the store! How could a cop not see it close up? Suddenly I became all 'law and order'. I got a clerk from the grocery store to come and look and see the blue badge, see it was plainly displayed before we even opened the car door. Having a witnesses name and address in my pocket emboldened me. I pictured myself riding into court in my wheelchair with a picture of Justice - you know that blind chick with the weigh scales - on a picket sign above me.

I was going to be the ultimate crip. How dare they give me a ticket for parking legally when they let buffoons park there all the time, no - ticket the cripple.

I was mad at a world gone mad.

The ticket was only fifteen minutes old, the ink had not grown cold.

Calling the number on the bottom of the ticket, I blasted out an indignant harummph (except with lots more words) only to be told that I was talking to reception and needed to talk to the supervisor on duty. The superviser got a quicker, watered down version - I'm disabled I can't keep that energy level up over long periods. She tried to explain to me some possible reasons for getting the ticket, I wouldn't listen. I'm a wheelchair user, I'd been in the store shopping in my wheelchair, I have a legitimate blue badge displayed on the dash. She said that she'd contact the officer who wrote the ticket and see if she could come back to the ... forgive me but I have to say it ... scene of the crime.

She arrived 10 minutes later fully prepared for a 'disgruntled citizen'. I was sitting in the car pouting. I had wanted to get out and wait in my wheelchair and have her drive by me as I glared at her. Joe said that was over the top. He takes the fun out of everything. So when she arrived, I waved her over to my side of the car. She approached Joe instead as he was in the drivers seat. Before she could get a word out I said, "Unless you want me to think that you are one of those people who won't speak directly to a person with a disability, I'd come over and talk with me. This is about me, my wheelchair and my blue badge. Joe is just the driver."

She came over and launched into the fact that she saw the blue badge but it had slipped down and the date was not visible so she didn't know if it was current. Oh, God, I'm going to get stuck with a $300 ticket. I immediately pointed to the back of the car at my wheelchair and said, "That's my chair, I'm disabled," I grabbed the blue badge, "this is my permit, it's current. I can't believe the number of times I see people inappropriately park here, get off scott free and the CRIPPLED GUY GETS THE TICKET." I glared at Joe, I shoulda been in the wheelchair, dammit.

She smiled. If she hadn't been a ticket-giving loathsome banshee of a woman, she might have been pretty. "I guess that kind of isn't fair is it?" She then told me that she would void the ticket and it would all be fine. Then she goes all 'show and tell' on me and pulls out another blue badge and told me that just before seeing my car, she had stopped someone who was parking with a blue badge that was years old and hadn't been valid for a long time. She said that her vigilance was for my benefit as a disabled person.

So our blue badge is prominently displayed on the dash of the car.

Because Angus is so tough that they even ticket cripples for parking in the disabled spots.

How tough is that!?

Two Things

It was a simple referral. "He's playing with kids that are too young." This was a worry about social development, there were no other concerns lurking behind those words. On a visit to the school, everyone had opinions. Having kids with disabilities in the school was new to all of them. Segregated schools had only recently closed. Now they were faced with new students who made them ask new questions.

I asked about the family and got the familiar familial eye roll. They didn't see what mother could add to the discussion but I was welcome to call her. Call her I did. As it happened she was free at that moment and I went over to visit her. Recognize who I was to her, another call from the school, a fresh problem to be dealth with. She greeted me with little warmth and we sat at the table to talk. "What's the problem now?"

Explaining that her boy needed to socially advance and stop playing with kids a grade or two younger, her face hardened. "What do you expect him to do?"

Automatically I knew the problem. Her son had been infantalized by this woman, she didn't see him as a growing adult. It took me a few seconds to lay the foundations of blame and in that time she regrouped and asked, "My son, was he still limping when you met him."

Embarassed I had to admit that I hadn't met her boy but that I had a bounty of information from the school. But I was interested, "Why is he limping?" I asked.

She explained to me that her boy, though he had lots of disabilities in lots of areas but that he was an expert in riding his bike. She was poetic, she said, "When he gets on his bike it's like he gets off his disability." Several weeks before he was riding home from school when local hooligans sprang out and using a bb gun shot at him, hitting him three times in the leg. He crashed into the ditch and lay there terrified.

Mom found out when the neighbour, the owner of the house where he crashed, the exact neighbour that was hostile to her son being in the neighbourhood called her and said, "Get it off of my lawn." She flew out of her house, gathered him up and took him to the hospital. While there she called the police. The police were unsympathic and said, "That's what'll happen when you keep them in the community."

Now she was hostile, "You're a consultant, tell me what to do. If I insist that they press charges everyone will take those other kids side. If I don't, I'm saying it's ok to hurt my kid. Tell me what to do." Now she was crying and I was apologzing. He was playing with younger kids because they were safer.

I talked about this at staff meeting and a social worker, hearing the story, said, "I want to meet that mom." I explained that mom had had too many people talking to her about too many things." The social worker exploded, "That's her decision to make, don't make it for her." I called mom and explained that we had a social worker on staff who wanted to meet with her. She sighed, then agreed.

On my way up we chatted. The social worker, a black woman, was eager for the meeting and peppered me with questions. When we arrived and sat back down at the table, the social worker said, "I came up to talk to you because I heard what happened to your son. I want you to know that I have two boys, I live in an all white town. I know when my kids leave my house they are going to get hurt. They will be called names, they will be excluded. So I've taught my sons two lessons, they are the same lessons you need to teach your son."

Her fingernail tapping on the table as she made her points, she looked intently at the other mother, "First, be proud of who you are, second, people who hurt you because you are different are wrong. Wrong."

She went on to explain that there was no excuse for violence or namecalling or bullying. "Anyone over 5 years old knows it's wrong." We need to keep giving that message to our children. They need to know that they don't deserve to be hurt, that it doesn't come with being different, that it's not ok and that it angers us."

We talked a while longer and as we left mom got up and hugged the social worker and then she wept crying hard against her shoulder. I quietly left to sit in the car.

Be proud of who you are.

People who hurt you because you are different are wrong.

Baby Baby

Many years ago while doing consultation with an agency here in Canada I met a young staff, maybe in her early twenties. She was a strong and dedicated woman and I liked her almost right off. As we lunched one day she told me that she had made application to adopt a child and in particular had requested a child with Down Syndrome. She wanted to be a parent and didn't see that happening in the near future so she had decided to go the route of adoption. Her request for a child with Down Syndrome came as a natural result of her work with people with disabilities. She knew that there were fewer limits than believed and further believed that if she knew 'going in' that the child had a disability, she could use parented as an antidote to dour predictions. As I've said, a remarkable woman.

I only consulted there for about a year and it was near the end of my time as their consultant that she told me that a baby, a wee infant, with Down Syndrome had been borne and rejected. She was next on the list. She had to prepare to parent with barely 9 days, not the typical 9 months. Her excitement was palpable. She immediately went on maternity leave and began preparations for the arrival of her little girl.

Several months later I was back in the office as a follow up and I asked after her. I asked if I could call her to see how she was doing. The agency called her, asked her, got her permission and then gave me her number. She agreed to let me come over for a visit after work that day and gave me her address. After getting lost a couple of times, I eventually found my way.

Tea was on and we sat together and she looked so, complete. The baby was still sleeping so we whispered as we talked. I asked a bit about the child's natural parents and she told me little, other than the fact that they didn't even want to hold the baby once she had been diagnosed with Down Syndrome. A social worker had tried and failed to get them to reconsider, offered all sorts of help and support but they were resolute. The child came up for adoption because their was fear for her safety if she had gone home with them.

Suddenly there was a soft sound from another room. My friend closed her eyes and said, "I never tire of that sound." She got up and went to get the baby. I realized I was trembling with excitement. This was so cool. Finally a happy ending.

The baby was beautiful. Beautiful in that way that babies with Down Syndrome manage to be. Forgive me, but that extra chromosone ups the cuteness quotient of so many babies. The baby was just waking and she rested into strong hand and arms. I declined to hold her. I like babies but I'm always afraid of dropping one. I'm not always that coordinated. But I did get in close for a look and make all the right kind of baby sounds. She opened her eyes and looked at me. She may have been rejected once but I hope she saw acceptance in my eyes.

As we finished our tea, wee babe rested in those strong arms. We fell silent for a minute and she looked down at the baby and began to stoke her face, saying, "You have the most beautiful eyes, don't let anyone tell you otherwise. You have the most beautiful smile, it's one of your gifts. You have ..." And on she went a little litany of attributes. I was moved to near tears.

She looked at me and said, "She's going to get so many negative messages as she grows, I've decided to start filling her up with love now, I want her to hear how beautiful she is so that when others call her names, her ears will be full of positive words."

We then talked about what she wanted to do as a parent. She of course wanted to provide the maximum amount of stimulation and opportunities for learning and fun. But she also wanted to prepare her to live in the world as it really exists. A world that will attempt to devalue her little girl because of her disability, because of her Down Syndrome. She said that before she leave home for school, her daughter will know what it is to love and respect herself.

I thought then, and now, that she was a wonderful parent. She wanted her baby to be prepared both intellectually and emotionally for living life as a kid with Down Syndrome. She wasn't going to raise her child 'just like any other kid' ... because her little girl would have challenges that other kids didn't have. Challenges, not to learning, challenges from a sometimes hostile world.

Leaving them I figured that that little girl had won the 'mom lotto' and got a good one.

She got a mom who wanted a better world for her child, but also wanted to make sure her child could live in this world - until the better one comes along.

Jig

I went to a movie this weekend and as I'd gone to see all the blockbusters we were there to see a much smaller quieter movie. A movie where the only special effect was acting and where the story was carried along by dialogue. It took a while to get used to it. The movie, "Evening" was received differently by the three of us. Two over 50 thought it wonderful, one barely thirty, didn't get it.This was a 'big question' movie. Prompting viewers to ask 'Why was I here?" and "What did I accomplish?" We all left the movie subdued.

As I rolled out into the theatre itself I was evaluating a bit of my career and a few of my accomplishments. Then I saw him, a guy with Down Syndrome came out of another theatre his eyes full of the wonder of special effects. He stopped, looked around blinking in the light. He spotted his support staff and started to walk towards him. A group of teens came out of the movie theatre and they were all talking all at once. One of them, talking and looking backwards while walking forward, tripped. The others were on him, "Jason, you are such a retard." Then 'that word' flew out of all their mouths.

And struck him.

That innocent guy with Down Syndrome, stopped, looked at the group with terror, tears filled his eyes. He was frightened. Frightened of just being him, there.

The group passed him, not even noticing him and left the theatre. His staff, not understanding why he froze in time and space, kept urging him along.

All the drive home I thought about the movie. Then him. Is it possible to stop the causal use of hateful words? Is it possible? What about MY purpose, my accomplishments ... how come after a lifetime of work, its no where near being done, dealt with? Did it matter, what I did, what we did? It didn't seem to matter much to that guy in the movie theatre.

Then this morning, I came on and checked my email to find that there was an auto-note from Chewing The Fat written by Stephen. The ARRSE thread called Mentally Handicapped Kids is gone. It's history. That hateful bile has been taken off their website. The images of violence have been deleted. I didn't think we'd win. But we did.

Let me stop for a minute, there's something I need to do.

(Pause)

It's an ugly thing seeing a grossly obese guy doing a little jig. Let me get my breath back.

(Pause)

Does this matter, what we've accomplished here? I know from following this discussion from Chewing the Fat to other discussion boards and networks, that once Stephen brought this discussion here - it went worldwide, so when I say 'we' I really mean a collective worldly 'we'. Does it matter?

In a word.

"Yes."

So this kind of stuff appears elsewhere on the web and elsewhere in the real world. Yeah, I know. So this might appear again on ARRSE in another thread, in another way. Yeah, I know. That kid with Down Syndrome in the movie theatre still gets called names. Yeah, I know. While all that matters, it doesn't matter right now, right this instant.

What matters is that a group of people, unknown to each other, united only in their care for people with disabilities, came together and said "Enough!" We discovered backbone and stared down someone who was perpetuating harm.

Surely that's cause for joy.

One of our problems, I believe, is that we are always too much intimidated by what's yet to be done, what's got to be done, what'd on the agenda to be done - that we are so crushed by future battles that we don't celebrate present victorys.

So, I'm celebrating.

And I'm dedicating my celebration to that guy with Down Syndrome in the movie theatre. That shot was fired for you. And if we have the power to do what we just did, we just may make it entirely safe for you to live in this world without being assaulted by hate.

Just maybe. Just maybe that's why I'm here. Just maybe that's one of my shared accomplishments. Just maybe when it's at the end for me, I'll remember this day.

Oh, my, the urge to jig is back ...

Telathons

I hate to admit it but 'Live Earth' kind of turned me off. I tried to watch it. But something about it bothered me. I only watched a few minutes of a performer on stage in Rio. All her bandmates had slogans on their tee shirts about ending hunger, poverty, child abuse and other worthy goals. She herself had a white dress on with the word Darfour across her chest and something, i don't remember what, written in black letters down her white dress. I won't tell you where her peace sign was, because if you didn't see it you wouldn't believe it.

Try as I might, I couldn't be moved. In fact it all seemed distasteful. Kind of like they were trivializing important issues. Turning what should be fury and righteous anger into a fashion 'tee'.

Try as I might, I couldn't get away from the idea that I was watching a new kind of telathon. I don't like telathons. Jerry Lewis sets my teeth on edge and the idea of calling youngsters with disabilities 'Jerry's kids' is out and out offensive. It may raise money but at what cost?

Try as I might, I couldnt understand how a concert with all it's inherent waste was thought to be a way of bringing the issue forward. I saw energy just burning on that stage. And not from the performers - from the lights and the sounds and the cameras.

So I sat on my couch wondering when they were going to bring planet earth out in a wheelchair with an oxygen mask placed over the hole in the ozone. When was Jerry going to cry big Jerry tears for the fate of poor fledgling earth? When was poster child 'Earth' going to pull at our heartstrings by slowly wheeling off stage, stopping to cough up exhaust? I knew it must come at some point, but I clicked away. I've seen enough of these to know no real good can come from this.

I'm sure the intent was for something different than what I felt.

But what the earth needs is action, not emotion.

Is change, not theatrics.

Is to be viewed seriously, not as a cause for pity.

As a disabled person, Mother Nature is my mom too. I care for her. But as a disabled person I don't want her to be made the object of charity rather than the recipient of respect. It only took a few hours in a wheelchair to learn that. And with a bit of respect, just a bit, we wouldn't need 'Live Earth' because we'd already have one.

Secret

I so get it now.

I first noticed the phenomenon many years ago when doing a consultation for a family who had a young boy with Down Syndrome. They wanted a consultation not because he was a behaviour problem but because they weren't sure how much to 'push' and how much just to let him 'be'. In meeting him I was quite captured by his disarming smile and his cleverness. He was in many ways a typical kid, and in many ways a kid with Down Syndrome - both those things can be true and both often are - it took him a little longer to learn things, intellectually but man that kid was gifted at learning things emotionally.

But in watching, a pattern really emerged. If the parents were wanting to engage him in an activity that he enjoyed, he was a bright eyed child, fully of laughter and enthusiasm. When they were wanting him to do things that didn't capture him he had developed an interesting strategy. Unlike other kids, typical kids, who might whine, or fuss, or tantrum, or sulk - he used a very different and much more effective ploy.

He became disabled. It was like his IQ dropped and he did everything but drool. I'm overstating it here to make a point - he wasn't that obvious. His transformation from a bright boy into a disabled boy was much more subtle, he was brilliant in his performance.

After an hour or so of observation, I sat with the parents. They were very, very nice people. The sat at the table and held hands and looked at me with such concern. It was a look that said they were used to getting very bad news from professionals and were readying themselves to greet whatever I said together, as a united front. (What professionals have done to families!) So since they waited with gravity, I approached them with grave face.

"I think I see the problem here," I said. They nodded, both of them in unison. "Your son has figured out exactly when to have Down Syndrome."

They looked startled. I explained that I saw a kid who knew he could duck or avoid things he didn't like because all he had to do was turn into a disabled kid and the parents would back off. They looked at each other in shock, then back at me. Then we all laughed.

"That little bugger is never going to pull that on me again," Mom said as she wiped tears away from her eyes. The three of us joked around a bit and then I got serious again, after all I'm a consultant, and I asked them if they wanted some ideas about how to deal with their son's avoidance of unwanted activities. They shook there head and said that now that they saw his ploy for what it was, they'd be ok. And I knew they would be.

"Gotcha," I thought to myself as I drove away.

Then, yesterday.

We'd driven into Belleville for our regular visit with Joseph, the 13 year old wonderkid. He's kind of like a foster grandchild to us and we try to see him every month. We'd missed a couple of months because of travel so we had his birthday presents with us as well as a few things picked up on the road. His dad, who comes with us each month, says we spoil him. We say that we see no evidence of that at all. He's a great kid.

After presents and movies and all sorts of other stuff we stopped at a mini-golf thing that they set up every summer in a parking lot in Belleville. The thing looks like it was made out of plywood and was made in a hapdash fashion on a table saw. But kids like that kind of thing. We pulled up and I really, really didn't want to do it. So as everyone got out of the car, I said, "You all go on without me, I can watch from here."

In unison they all encouraged me. I was firm, "No, it will be just too hard with the wheelchair, I think I'm going to have to give it a pass."

Even I was amazed at how quickly they all said, "Are you sure?" and gave in.

This being disabled gig has it's advantages.

I settled back in the car seat, pulled out a book I'm reading and spent a little over a half an hour in the peaceful quiet of the car. I soaked in the alone time. I kept glancing up and waving, trying hard not to over play my hand by waving like a feeble invalid, and smiling at them. I slipped my book away when they came back and listened to mini-golf stories.

Then we decided to go for something to eat.

I was definately up and out of the car for that.

Yep, I shouldn't have done it but I did. I used my disability to get out of something I didn't want to do.

And I'll admit it.

I'll likely do it again in the future.

That kid with Down Syndrome had it going on. I'm kind of sorry now, I gave away his secret.

Real

I did not have it easy as a child. Not being a fan of the reams of abuse biography out there, I choose not to say too much about it. Suffice it to say that I embrace the safety of my adulthood with full heart. Though recently I've been thinking about Evelyn, a woman who lived with her husband in a neighbourhood near mine. She seemed to understand that the fat kid from down the way was having a rough go of it. As such she always made space for me. And more significantly to me now, she was the first person with a disability I ever really met.

She and her husband seemed to always have been poor. But they managed on what they had to live within their means and without missing much. I remember many times at their home, one of the few places of rest that I had as a boy. When her husband died, Evelyn, mourned him without reservation but also without devastation. It was just one more thing she no longer had. She adapted, coped and then picked up her walker and moved on.

I noticed her wedding ring only because my mother once cruelly joked about the 'bit of glass' on her finger. When I saw it I suddenly felt sorry for her, for them. It was clearly a ring of no value. A chunk of dull glass was held in place on a ring that was not gold. Once I saw her looking at her ring and I knew she was remembering him. I asked her to tell me about the day he proposed. I love those kind of stories. She smiled at me and said that she'd rather tell me about the ring.

When her husband proposed to her he gave her a ring that sparkled with vibrant fire. She knew it wasn't real, he didn't pretend. It was glass painted to sparkle. He promised her that one day he would buy her a real ring with a real stone. Over the years the sparkle wore off the ring but she loved it nonetheless. When his mother died she left him a tiny sum of money. He told her that he wanted to use the money on something frivilous, he wanted to replace the ring.

She told him that she didn't want another ring. That this ring, the one he gave her, made her think of their marriage. After the shine wore of it became real, what it was underneath. She didn't want something else, something new. She wanted to keep what was real. And so she did.

For some reason her story made me cry. In my world there was no such love, no such tenderness. She got up and stood, using her walker for balance. She shuffled over to me and sat beside me on the couch. "I want to give you some advice," she said, "hold on to what is real. Always face what's real. Don't pretend. Don't flinch. Don't look away. Face what real and you will always be ok."

Her advice has stayed with me throughout my life. I know what's real. I try not to live in the world other than it is. I remember her on her walker, slowing shuffling through a life without her husband, without many things, but being uncompromising with who she was and what she saw.

The day we moved from town, I went to say goodbye to her. I thanked her for caring for me, occasionally even loving me, and again, I cried. She hugged me and said, "You're real. Remember that no matter what ever anyone ever says about you, no matter where ever you go. You're real."

Today, I thought about her, I have just written a little note to a woman who is getting married. I wanted to tell her about Evelyn's ring. But Evelyn is much more to me that the story of her ring. She would become in my mind the model for what it was to have a disability. To exist and be 'real' in a world that would avert it's eyes from her, would pretend her non-existance and insist on her non-importance.

She was real. Her walker was real. Her heart was real.

Her advice to me would get me through much of my life, and give me a compass to lead me our of personal hell and help me navigate a world of prejudice. No matter how or why people tried to diminish me, I always knew that I was real, that I existed beyond their idea of who I was and who I could be.

Every day reality changes. One day I walked, now I roll. My wheelchair is real. But I am no less real because I sit in it.

When Evelyn died I went to her funeral. I was a stranger to the small group that gathered there. I was surprised when listening to her eulogy that she had attended university and was one of the first women in the province to be granted a degree, in philosophy. I was surprised to learn that she had been disabled for her whole life and that her husband had met and married her against huge opposition from his family. I was surprised to see a young woman wearing Evelyn's ring.

I talked with her after the cerimony and discovered that she was Evelyn's neice. I asked about the ring.

She said, "Do you know the story about this ring?" I told her that I did.

"I've kept it to remind myself about what is real." She said.

I told her I understood.

And I still do.

Go! Now! Start!

I don't know what to do with my shock. I thought I was beyond shock. For the past several years I have been working intenstively on the issue of abuse reduction of people with intellectual disabilities. Right now I am working with Vita Community Living Services in Toronto and my primary job is to take the organization through a series of changes with the goal of becoming as abuse free as an agency can possiblity be. The challenge has been thrilling and we've created all sorts of structures and services with the organization. Primarily of which we are working so that people with intellectual disabilities are their own first line of defense. That rather than rely on others for protection, each has the skills to protect and report. Needless to say the organization is muchly changed.

And me, I was growing hopeful. Other organizations are getting wind of our social experiment and coming forward asking for our research and our process. It seems that the idea of providing safe services is becoming something that people finally think is important. Our relationship with the police has become much better as we take every report seriously, report every time, and every staff knows exactly how to take a report without mucking up evidence. I'm thrilled. I felt hope.

Until yesterday morning. Here, on my own blog someone asked me to go to a website, asking me to help get the word out about it. When you go to the website it welcomes you thusly: "Welcome to the British Army Rumour Service, ARRSE. The Army Rumour Service is THE unofficial British Army community website." I am not one of those fancy bloggers who can put in a url under text for you to just click on, sorry, the web address here is www.arrse.co.uk .

It’s called,"Mentally Handicapped Kids (don't read if easily offended)" follow the directions that Steven left in his response to my post "Enough Said" of two days ago and you will find it. Steel yourself and then read some of the most hateful text I have ever seen written about people with disabilities. The use of terms like 'mongs' and 'windowlickers' is bad enough but the images they write about are violent and purile and beyond disturbing. This is the deepest well of disability hatred that I have ever found.

This is the UK military. That's who the site is for ... they even make a joke - a taunt - wait till the press reads this. Well the press hasn't done anything about it as Steven pointed out in his response on that post. Why? Because Disphobia is not recognized as being of the same seriousness as 'racism' and 'sexism'. But why not? People with disabilities share in discrimination in employment, in housing, people with disabilities are the most victimized group in our society. Even so few recognize people with disabilities as a legitimate minority. That hate speach can apply to people with disabilities. That it is possible to incite hatred and violence against people with disabilities. They don't get it. Don't want to get it.

So, I say, let's do something.

I know that there are a lot of people who parent kids with Down Syndrome visiting my blog. I know there are parents of a lot of kids with other disabilities, who read this blog. The terms used 'mong' (from mongoliod) and 'windowlicker' amongst others - they are using them against your kids. One guy boasts that he's taught his children to name call and bully kids with disabilities and gives them treats if they hurt one. (I'm not kidding)

What about a campaign of parents supported by everyone else who wants to join in. Read the posts, find a news outlet in England, and write them. Perhaps some British readers could let us know who to write. In Canada all our major newspapers has a disability column written by someone with a disability. Is there someone over there. Tell us who, give us an address ... give us an outlet. I'm sitting here ready. I'll join you. Let me tell you an army of loving mothers and dedicated fathers can take on a military built on bigotry, I'm convinced of it. So ... go ...

A Tale of Two Boys: a guest blog

Over the past few days Lina's been in my office and we've been chatting about stuff. Lina has said that she has found it amazing that I have so many stories just from being out an about in the community. I've been telling her that there is so much to see but that people close down from seeing what's right in front of them. Then, one day, I had something I needed to ask Lina about work and when she came into my office she said, "OK, we'll get to work in a second" then she told me a story about something that she'd 'seen' for the first time. A couple days later, it happened again. The two stories she told me illustrated my point that there is a world out there to be open to and to see. I asked Lina if she'd write a blog about her experiences so that I could post it here. She agreed, though with some trepidation. I read what she wrote and am proud to bring it here with you.

A Tale of Two Boys

Lina Baccarella

If you ever need to find me, in the summer, particularly after 6:00pm, search the local baseball parks in Vaughan, and you’re guaranteed to find me, watching as intently as one can, to her son’s baseball game ... whilst holding numerous conversations with parents ... multi-tasking at its best.

But one night, something happened during the game that caught my eye. The Ump called one of our players out, something about the coach interfering with the play (after all the years, I really don’t understand all the rules). It seems that our couch, in trying to urge Joey to steel second base, touched him, and this is not allowed. Well, our parents did the usual bickering to the ump. But what caught my ear was Joey’s mom, who from her seat said ‘that’s not fair, Joey’s needs the extra help, he has a disability’.

That caught my ear because my son has been on this team for a few months now. I see this group of boys twice a week and sometimes on week-ends. I haven’t seen any disability, I have expert eyes, what did I miss? Ok, so now I need to really watch and think, I have noticed that Joey doesn’t always sit with the team, and that he doesn’t always socialize with everyone, I think Joey might have autism, how did this escape me???

Ok, back to the game, pay attention, the other team is up at bat, and they hit the ball, right to Joey, and Joey drops the ball. Joey gets the usual heat from the rest of the boys, ‘come on Joey, catch that ball….come on Joey’. I hold my breath, didn’t the boys hear his mom, Joey has a disability, should they really be doing this to him?

Next boy goes up to bat, and hits it to Joey again, this time Joey catches it rendering the boy at bat out, and then tags out the boy running to third – double play. And the boys let him know what a great job he did, cheering, just like they would every other boy. They treat Joey like they do each other, to them Joey is another 11 year old boy playing baseball, with them, on their team. Wow, this is really cool, this is what watching, really watching as my Sensei Dave continuously tells me, is all about. I am in awe.

But it doesn’t end there. The following week, we take a small break from baseball one night, because one of the boys is testing for his yellow belt in Karate. This is a special event; you go to a karate school, and take a two hour class. My daughter and I sit to watch the class. The people testing are lining up in order of belts (in Karate all belt levels are asked to stay in particular order). And everyone is doing this except for one lone boy – teenager, probably about 16. He has a green belt on, but he is standing behind the white belts.

Actually not standing but rocking, he is standing there rocking, and a bit of a hand flicker, oh my God, this boy has autism too. Oh, so I say to myself, that’s nice, they have probably catered the class specially for him, I mean he has a green belt on, I myself possess a white belt – no easy task to acquire (even though it’s the first) and any belt above that requires a great work out and agility, they must cater the class.

Then the class begins, and the Sensei asks the ‘belts’ to line up, and the teenager with the green belt, lines up, exactly where he should be. He works out with everyone else. When it’s his turn to test, he is the only green belt there – talk about pressure – this has freaked me out more than once, but he just went up to the front of the class and tested, and he was good – this was amazing.

And I have to tell you, as amazing as this was to watch, the very best part of this story was that I was watching this with my daughter, when we talked about this class later, and I asked her if she noticed the teen who was testing for his green belt, she indeed had. She noticed that he tested alone, she did notice the rocking and hand flickering, but that wasn’t what we talked about, we talked about the fact that he tested alone, he did an amazing job, he got his belt, and he was good, really good, no catering required!

Diversity through the eyes of my kids is even better then my own. They see people, lots of people, and they see all that they can be with their disability. This is what we talk about, this is what we preach, this is what my kids are living, thanks for teaching me to watch more closely Sensei.

Enough Said

I sat through a training film that drove me nuts. Just nuts. It arrived in the mail with a request that I review it and send it back. It was a short 'you tube' kind of film about a bunch of students who were 'experiencing disability' - clever stuff that. They tied blindfolds over their eyes and then attempted, unsuccessfully, to do a puzzle. They put them in electric wheelchairs and they crashed into things. They gave them earmuffs and let them try to talk to someone. Afterwards they went on and on and on about how much they'd learned.

They learned it was tough to be disabled.

Give me a freaking break.

What a stupid exercise. It's an exercise that reinforces stereotypes not challenges them. It reinforces a gratefulness not to 'be like that'. It reinforces the heirarchy - just what we need.

And stupid, stupid, stupid.

A blind guy would have had the puzzle done in six seconds. Cause he'd know how to manipulate by touch. He wouldn't have broken a sweat.

A disabled woman would have steered the wheelchair without a problem. Cause she'd know exactly how to maneuver the steering stick. She wouldn't have come near the wall.

Any deaf person alive would know sign, big deal about the communication.

They made the DISABILITY the issue. They tried to get them to experience DISABILITY. All they did was tittilate themselves with the idea of being disabled all the while they knew they could see, walk and hear. This is NOTHING. Not A Thing.

I'm annoyed.

Because the issue isn't disability. Please get that. It isn't overcoming blindess or deafness, it isn't overcoming life in a wheelchair.

It's about bigotry.

It's about attitudes that think doing puzzles with a blindfold over your eyes will lead to insight about another life. It's about attitudes that 'thank heaven's that's not me'. It's about attitudes that the barrier is the disability.

The barrier has never really been the disability - it's attitudes that have stopped generations of people from participating fully. Attitudes that lead to segregation. Attitudes that lead to unemployment and poverty.

Say it with me ... congregate, segregate, persecute, destroy

That's the history of disabled people. That's what normates need to learn.

CONGREGATE SEGREGATE PERSECUTE DESTROY

It ain't about no freaking puzzle and a blindfold.

How shallow is that?

So now those kids walk away from the lesson just feeling lucky. And that feeling of luck. Of being better than, blessed even. Of not being disabled. That's the main ingrediant for cooking up a batch of bigotry.

I hated it.

I guess you can tell, huh?

Enough said.

Computer Image

I'm not sure who my computer thinks I am.

It lets through these weird emails. Right now, I'm getting all this stuff about Irritable Bowel Syndrome - causes, treatment ideas and medications. I don't have IBS, not that I'm not often irritable and not that, now over 50, I don't find my bowels much more interesting than I did at 15, but I don't have a syndrome. Really. I don't.

And I don't need viagra. I know you don't need to hear about this, but my computer seems to think that I do. I get all these messages exhorting me to buy cheap viagra, or alternate viagra, or natural viagra. My computer seems inordinately interested in my private parts and my private life. I don't know where it gets these ideas, but it does.

Not to mention, I'm being stalked by a bunch of women with names like Tiffany and Brittany and Jennifer. They all want me. They beg me to write, send money. They say they really, really, really, want me. Some girl named Selma this morning told me that she was hot hot hot for me and that she was waitng, right now. Really, these women want a viagra using guy with irritable bowels ... they must set the bar really low these girls. But as much as I try to block them, it works for a while and then they're back.

I live a much more interesting life, it seems, in the mind of my computer than I do in real life. In real life I sit on the couch watching telly and eating barbeque'd pizza (if you've never had it you haven't lived) and occasionally gossiping on the phone. I go absolute days without thinking, once, about Tiffany, or viagra, or blessed be, my bowels.

But today the computer let through a new batch of emails. About planning funerals. Does my computer know something? Is it hinting at me? What is going on? Do I have to start worry about heaven being ramped ... and please don't give me that 'there are none with disabilities in heaven' stuff. I don't buy it. I'm just assuming that heaven will be fully accessible - I don't want to be disuaded of this. But the emails aren't about heaven, they are about coffins and plots and buying a plan so that my 'loved ones' need not bear the burden of my death. Um, I kind of want them too ... not financially of course ... but emotionally, yeah, I'd like at least a little upset.

I've blocked these emails. And truthfully, I think I'd rather the viagra emails. They at least think that I've got something to live for ... or hope for. But as for Tiffany, I'm afraid I'm gonna have to let her down. She is just so ... so ... not my type.

Inspiration

Rah! Finally.

The grocery store we shop at is part of a chain of stores that have locations all through the eastern provinces and a few scattered stores out west. We like the store and we like the fact that in most stores we shop in while we travel, we see employees with intellectual disabilities working at bagging groceries or dealing with errant carts in the parking lot. Though I've never checked, I just guessed that the store had a policy of some kind to hire people with disabilities. I like seeing corporate responsibility and a true understanding of diversity.

But in my local store, up until now, I've never seen anyone with a disability working there. Hell, I'm the only one with a disability that I've ever seen in the store. Even though I know that there are tons of people with invisible disabilities, there must be the disabled parking bays are always full, in the store. It's nice sometimes just to 'see' difference. Anyways, there she was, big as real life, filling plastic bags with groceries.

She wore the store tee shirt marking her as an employee and she was competently placing groceries into the plastic bag. I looked at her waiting to be inspired. I am a person who is easily moved. I can feel tears brim when I see someone with an intellectual disability standing at a bus stop waiting for a ride. I think it's because of two reasons. One, I'm an emotional kind of guy. Two, I worked at the dawn of time in the institutions. I can overlay a picture of a guy standing lost and alone in an institution hallway over the image of the guy at the bus stop ... I can actually see the progress made - and it thrills me.

So, I waited to be inspired. And she should have done the job. I get all sorts of inspirational emails with stories of people, like her, with Down Syndrome working as bagboys and who create whole new worlds around them. They inspire truckers to leave money for a heart operation, they inspire shoppers to rethink their lives, they do their job - and more - they make a heartless world whole. These are busy, busy, busy people with a big job to do.

I waited. For inspiration to come. But it didn't. She did her job, true. That should have been enough. So many people write of those with intellectual disabilities as unemployable drains on society. But she had a job. Putting bread into a bag. She had proved them wrong. And wrong is the word. There was something wrong with the picture.

"You're staring," Joe whispered.

I quickly looked away and we headed to the car. I thought of her on and off, felt deep inside for something. Anything. But I felt nothing. Not a single spark of inspiration. Drat. What's up with that.

Yesterday we needed to stop by a grocery store to pick up some things we needed for the BBQ that day. As it was after a movie we stopped at a different store from a different chain. I looked purposely at their bag personnel and noticed none who had an obvious disability. But, I noticed something. They all looked bored. Completely bored. When one of them glanced at their watch, like she had done several times, I understood something.

She was bored stiff. She felt about her job like they did about theirs. That it was beneath her talents. That it was something to do to fill the day and make some money but that it wasn't the diamond in the sky - the pinnacle of her ambitions - the opportunities to change some minds and warm some hearts. It was just bagging groceries. Just because she had a disability didn't mean that she had to act ally grateful and look moonstruck at a block of cheese that she was sticking into a bag.

It's a boring tedious job.

And she'd rather be reading, or watching television, or gabbing on the phone - just like everyone else.

So no inpirational story will ever be made out of the woman with Down Syndrome bagging groceries at my local grocery store. She's not going to end up travelling through the internet as an example to all of us normates about the true value of being human. She won't be a literary equivelent to Tiny Tim. She'll just be a bored bag clerk, doing what's got to be done.

And, I guess, ironically that's kind of inspiration enough.

Well Look At That

Everybody noticed.

Everybody stared.

Eventually even me.

We stopped at Petro-Can to fill up the car and had to wait until a lane cleared by the pump so we could pull in. We'd passed several other stations without line ups, but here we sat. Joe collects Petro-Points and refuses to gas anywhere else. It's one of his, um, quirks. I didn't notice anything at first, then I saw a young guy about twenty staring intently at something. I put my eyes on his gaze and slid along to see the object of his attention. "Oh, stop," I thought to myself. He was staring at a man, about the same age as he was, with Down Syndrome who was pumping gas into a car.

"Surely," I thought, "people are used to seeing the disabled amongst us being out and in the community doing every day things."

Then I noticed that everyone else was staring too. Really looking at this guy. This was more than "Wow look at the disabled guy pump gas." This was something else.

So I took in the whole scene. He was pumping gas into a car. The car was empty. Forgive me for what I thought, but I thought that his mom or dad was probably in the service center going to the washroom. He finished pumping gas, went in to the little kiosk and paid.

Now, I understood what people were looking at. staring at, seeing. He got into the car, on the driver's side.

Started the engine.

Drove off.

Even I reeled at that. I had heard of people with Down Syndrome driving, but I'd never seen it before. My automatic assumption was that he was a passenger. That because he had Down Syndrome he'd never ever be in the driver's seat.

They weren't staring at him. Those people at the gas station. I think that something different was going on. They were re-evaluating eveything they ever thought about someone with Down Syndrome. They were ripping apart pre-conceived notions. They were having prejudice challenged.

Admittedly, so was I.

Damn.

Just when I thought that I had it all together, some guy with Down Sydrome drives me off the road. Makes me realize how deep my own prejudices run.

I wonder, though, about the effect he will have. On me, it was immediate. I reached inside myself and raised the bar - set expectations higher - not for them - for me.

But I wonder if that twenty something guy who's stare I'd noticed. Should he ever get the news that his wife is carrying a baby with Down Syndrome, will he remember the guy with the car, pumping gas. The guy who drove off. The guy who is living a life, unpredicted. The guy doing things, unexpected. The guy who dreams, unencumbered.

I truly hope so.

Church Lady

It was her cane that I recognized. Until I saw it all she was to me was an older woman shopping for cheese in the local grocery store. Then I spotted her cane, a jaunty one of a kind piece of usable art. "The church lady!" I thought. Joe and I had begun to go to a church near us a while back and stopped because it was a frosty cold kind of place. The only person who ever spoke to us was an elderly disabled woman who sat at the back of the church in the "disabled and elderly" seats.

So I pulled up next to her and said hello. Joe was a few feet behind me picking up pizza rounds but soon was beside me greeting her as well. She's a delightful woman and dove into our chat with enthusiasm. She told us that she was pretty much housebound now and that she was relying on daily nursing care in order to stay at home. She wasn't whinging or moaning, she was just describing her life - because of our brief church attendance she was treating us as old friends.

Then she asked about us, the social arts as often practiced by the elderly are beautiful and graceful, and showed real interest in our answers. We talked a bit, keeping things brief as we could see her tiring from the effort of being up, being out and being in conversation. Then she asked me, "Do you mind me asking if you ever walked or if you've always been in a wheelchair?" I explained to her that I'd only been in the chair for a year and a half coming on to two years now. She nodded and put that information tidily away.

We wished each other well, she exhorted us to come back to church so she'd have company at the back. We laughed and said that we just might. Knowing of course that we wouldn't.

As I waited for Joe to load the groceries into the car it struck me. She's the first person I am aware of that only knew me as disabled. Everyone else in my life, even casually, knew me 'before and after'. And somehow it bothered me.

It pains me to write this, but I've promised myself to be honest in my blog, there was a growing discomfort, maybe even panic, in my chest. It was like I'd swum to far and lost sight of the shore. The boundaries of normalicy, of the land of the walking, were fading into the distance. I knew, suddenly and irretreivably, that I was never going to be a citizen of that land again. That as much as I am comfortable with this new land and this new life, I had to now give up my passport.

Everyone I meet from now on, will know me as who I am now. Not who I was then. All of this tumbled in on me in the blink of an eye. I got up and helped Joe load the wheelchair into the car and we were off. We waved at her as she came out of the store with her cart and she smiled brilliantly, picked up her cane as if it was a part of her and waved back.

If she can sail so far from shore.

So can I.

So can I.

38

Today is our 38th anniversary. Not bad, huh, that in a world where couples divorce because of a disagreement over which brand of peanut butter to buy, we've made it another year. We've got the day planned. It's a 'guy' anniversary for all the obvious reasons. We're going to one of our favourite restaurants for lunch, we've been going there for years. They know us and greet us as a couple. Then we're going to see "Live Free or Die Hard" at the theatre up here we go so often that they know us as 'those two guys'. From there we're going to pick up fresh veggies at a market we love. Then a quick stop at a beer store to get, um, beer.

Then it's home to make potato salad and grill veggie hotdogs on the grill - which we'll have smothered in grilled onions and peppers. We'll eat on the deck, drink a couple of pints and talk about "Die Hard" like it was serious Russian Literature. That's it. That's the day. The perfect guy anniversary.

We've been chatting about what we were going to do to celebrate over the last few days. And as we talked we've slowly worked out this plan. Now, most of the women I know that I've told about this don't see the 'plan' in it - nor do they see the 'anniversary' in it. But we've never lived our lives seeking approval from others.

What was cool about the day, is that we planned it all. Every bit of it. Without ever once thinking about accessibility and the wheelchair. It just never came up as we talked. It was weird, for a year and a half, every time we wanted to go somewhere we had to check that I could get into the place. Like yesterday, I was a contestant on our radio stations quiz show (out on the first question- Alice Cooper is the answer to all sorts of questions that I wouldn't get) and I get a fairly cool prize, just for participating. Had to check if I could get into the station. Apparently I can.

But we planned the day we wanted. Never thought about the chair until only about a half hour ago. Every single place we plan on going is accessible. Several of the places we're going we've been going to for years. It's cool.

Thirty eight years ago we thought about accessibility, but in a different way. How many places were there that were accessible to us together? How many places turned us down when we tried to rent an apartment together? How many banks refused to give us a joint bank account? How many jobs demanded that we pretend our way through the day? How many family members turned their back on us - never to really look at us again?

We knew what it was like in a world of hatred, violence and murder; in a world of deceit, deception and mistrust; in a world of hypocracy, conspiracy and war to be told that loving is the deepest sin.

They say that coming out to oneself - as gay -as disabled - as different is the most difficult process. This is untrue. Coming out to the world as different and as human - standing face to face with bigotry, toe to toe with oppression while standing shoulder to shoulder with each other, that's a more difficult route. The road that must be travelled.

Today we just want to be an old couple going out for lunch and a movie before going home for beer and bbq on the deck.

Today we acknowledge that some prejudices have been ramped. Some places made accessible. For all of me, for both of us - and for my chair.

Today is our anniversary.

The Letter

"Hey, I know you!" She says it every time she sees me, which is every morning that I'm in the office. She remembers me from when I visited her in the institution before she moved back to the community. I remember her being a tiny little woman with a tiny little aura. She sat staring at a computer screen with no life in her face. She and I chatted a bit about computers, she smiled at me - like it took energy.

Now, only months later, she is bursting into my office. A big bright bold woman with a big bright bold aura. She wants to tell me about some letter. I want to get on with what I'm doing. But I stopped, pushed myself away from the computer - an act I don't even do for Joe, and said, "What happened?"

She was full of a story about getting some letter. She wasn't sure from who and she wasn't sure about what, but it was an important letter. She said that they sent it to her twice. With a few questions she seemed to be saying it was a letter from the institution asking questions. Who knows maybe they are doing follow up. I don't know. She wasn't clear.

That's wrong.

She was very, very clear that she wanted to tell me about the letter. It was very, very clear that this was important to her. It was very, very clear that my asking questions was an attempt to meet my needs by frustrating her. And I understood. I hate it when I'm in a middle of telling a story and someone stops to ask for irrelevant details. I just want to tell the story, have the joy of telling it uninterupted. I did what I tell others to do ... I realized, "It's not about me, shut up."

So she talked about this letter, about it coming twice. I know I'm repeating myself but so did she. Often, at increasing volume and passion. She wasn't yelling. She wasn't 'agitated'. She wasn't in need of anything but getting the emotion out. Not even "meaning" mattered, it was emotion that poured out of her it was her "feelings" that she wanted understood. She was annoyed by this letter. She was annoyed by the questions it asked. And in some way she was frightened by it.

Then suddenly she turned to me and pointed straight at me. "I don't want to go back! I told them I don't want to go back!! I don't like it there!! I stay here!!" She was firm. resolute. A woman who had spent her life on a PRN order was PROUD, RIGHT, NOW. Forceful and complete, she could speak her mind and did. "I stay here."

And the story was over. She grinned and then looked at her staff and said, "I know him!!"

She was gone.

I looked back to my paperwork. Important stuff, I knew it was, I'd been working on it for hours.

And she was why.

The purpose behind the work.

She doesn't want to go back.

She's home.

What it is to have a place in someone's journey. To be an intimate observer into someone else's ride through life. To be able to sit back and watch a woman with few words speak with eloquence and passion and truth. To be here, now, with her.

Tis a privilege what we do. A down right privilege.

Value

I noticed it just a little after noon. Panic welled up in my chest. It was hard to breathe. But I worked to calm myself down. Took some slow breaths. An hour later I was on the phone to Joe, "I think it's back, come and get me right now."

Twice I've face life threatening infections, once the flesh eating disease and once it's cousin a weird form of gangrene. I fought of the first infection suprising the doctors and myself. Everything returned to normal. That was 11 years ago. The second time was a mere 18 months ago, and this time I ended up in a wheelchair and weak as a kitten. Both times the infection started with a little 'tickle' in my skin. A little after noon, the 'tickle' was back. Near the same area as last time.

All I wanted was to get home and get Joe to take a look. He knows how to recognize the first signs of the infection. So do I but it was in a place that I'd not be able to see. (Don't ask, it's not relevant to this story.) Joe picked me up and I left the office. I told no one. I called a couple of friends on the way home to tell them. I needed to talk and Joe couldn't. He just focused on the road wanting to get home quickly.

Then, once home, he touched the spot where the 'tickle' was and I could feel, and he could see, that it was nothing. Probably just the heat of the day. I collapsed almost in tears on my bed. I didn't want that fight again. I didn't think I'd win a third time.

I'm writing this several hours later. Calm has returned to our home. But I want to state something. Last time I got sick I could walk before the illness. I've been in a wheelchair for almost two years now. And I was just as frightened, just as concerned. My life was as precious to me now as it was then.

There are those that think a life with a disability is a devalued life. Well, not to me. I valued it just as much, maybe more, than I did before. The idea of 'death' did not seem as an appealing 'release' from a life of disability. The stereotype of 'a life not worth living' is hereby declared 'crapola'. I am thrilled to be getting up tomorrow and getting going.

Roll on!

Family Matters

"In my day they put people like you in a home. Far away." She was old. Really old. She'd shrunk to the point that it looked like her shoulders were resting right atop her hips. I'd stopped it look at baby clothes in the supermarket while Joe was getting tin foil. I refuse to shop for tin foil. That's a Joe job. So I took my leave of him and went to look for a cute holiday outfit for Ruby who I'm going to see this long weekend.

She came up next to me and was only a little taller than me in my chair. I don't know if she was really looking at clothes - if she was it would have been for her great-great-great-great-grand-daughter. Suddenly she was telling me that in her day I would have been put away somewhere. I was nonplussed.

"Pardon me?" I said politely as I picked up a piece of clothing that could only be described as 'darling'.

"Yes, in my day they put wheelchair people in big homes. Took care of 'em there."

I didn't want this conversation but I just knew that she had come to me to just talk. "Well, we don't do that anymore."

"You work? Got a job?"

I told her that I did. I thought I'd hit her with being a sex therapist for sex offenders- but decided that though she was annoying she wasn't ripe for killing. So I just admitted to being employed.

"Amazing."

"Yes, I guess." Brief, to the point and polite. I was being good.

"My sister's boy was put away. He wasn't in a wheelchair like you, he was just a bit funny. They said it was best for him. Near broke her heart but she wanted to do good by him. She was never the same after."

"What about him, how did he do?" I asked.

She looked shocked. Like her care had only been for what her sister went through. Like he'd been a problem not a person. Like he was gone and truly forgotten. "I have to say I don't know. They didn't encourage visitors. We all just lost touch with him."

"They made a lot of mistakes back then."

"I guess." She seemed suddenly tired. As if the thought of the boy put away had weighed her down. Like his coming to life had taken the life out of her.

"What do you think of this?" I said holding up a little girl summer dress that I thought was cute and a deft way out of the conversation.

"I don't know," she said not paying any attention to the clothes, "why we let him go."

She turned and walked away from me. Not even a goodbye.

I know she was thinking of the boy lost. Her nephew.

I wonder how he is.

I wonder how she'll be.

I wonder why we did what we did.

OUCH!!

Today is a big day for me. Several weeks ago I was contacted by this guy named Vaughan who works for the BBC website OUCH. Firstly, wouldn't it be cool to have a name like "Vaughan". I love those kind of names. "Dave" is an OK name but it's hardly cool. When I first started writing, I was very unsure of myself and didn't want anyone to be able to attach my words to my name so I published under a pseudonym - I thought long and hard about it and came up with a name that I loved - then - but it's embarrassing now. Joe tried to point out that just the fact that my writing was published should have been encouragement enough for me to use my real name, but I would have none of it. Suffice it to say, I never came up with anything as cool as "Vaughan".

The reason Vaughan had written me was to asked if I'd join a team of bloggers to work on the OUCH blog. I almost fainted I was so thrilled. I mean I watch BBC box sets, I may live in the colonies but, my gosh, this is the BBC. I wrote back and said, without hesitation, 'yes'. I don't know much about Vaughan, except that he works for OUCH. Well, I can tell from his emails that he's a good writer, that he's got a great sense of humour, that he's patient with us new bloggers. He's sent me all sorts of stuff. I've got this line of computer type that if I upload to this blog there will be a cool button that will take people straight to the OUCH blog. I have no idea how to do this. I'm hoping that 'blog princess' my friend who got me into blogging will help me do that when we have tea this summer.

Anyways, I don't know if Vaughan has a disability. I'm guessing he does, it is a disability website. But then, does that matter. Once when booking a hotel room with Marriott the voice on the phone wasn't able to guarentee an accessible room so I was shunted over to their ADA (Americans With Disabilities Act - I think) desk. There someone talked to me about my needs, put me on hold, called the hotel I wanted and worked out the details and then came back to me and confirmed everything. Very cool service. I've been shunted over to them several times over the last few months and one guy was very friendly so I just asked, "So, working for the ADA desk, do you have a disability yourself."

Frosty.

"Why do you ask?" The tone was cold. I didn't know what to say. I guess I just wanted to know. In an odd way it mattered to me. I figure that people with disabilities have a tough enough time getting employment - that we'd be completely qualified for a job like working the ADA desk for a hotel chain. So I blathered on about just being curious, that he seemed to really get what the needs were ... yada yada ... I was sweating. I hadn't wanted to offend him. Well, he told me that in fact that he did not have a disability. But did assure me that there were those who worked in that capacity for Marriott that did.

OK, then.

So, I didn't ask Vaughan. I could have gone to the site I guess and tried to find out more about him but that seems stalkerish. I decided that I didn't really care. I care that he's got a great sense of humour and that he's been patient and encouraging with me. That's enough for now.

So, I've got to go over to OUCH now and write my first post. It's supposed to be an introductory 'all about me' kind of post.

So drop by. Sorry, I don't have the button up ... sorry, I don't know the url. But just Google these two words BBC OUCH and it should be right there.

See ya over in England!

Pride Day

At first everyone thought it was cute. I'm angered by this description as I hear it for the first time. A woman with a disability develops a crush on her instructor at the sheltered industry and it's 'cute' maybe even 'sweet', let's all say 'ah'. When a person with a disability has a 'crush' it's never seen as deep, or serious or, God Forbid, real. I am called in to discuss what to do because they think it might have been handled badly.

OK, deal, I'll be there that afternoon.

I meet with the supervisor who tells me that they first noticed that Tamblyn had a crush on one of her female instructors when they'd see her during the work day stopped and just staring at her. Then little gifts began. Nothing expensive. A can of Pepsi. A bag of chips. Just tokens really. Janet came forward at that point and asked for advice. She was told that Tamblyn was just going through a phase and to just ride it out, do nothing to encourage her.

"Janet? She had a crush on Janet?" I asked startled to hear her name.

"Yes, why?" They asked.

"No reason, I'm just a bit surprised." And I'll admit at that point I was also a bit relieved. I knew Janet. Personally. She and her girlfriend and Joe and I used to go out for Indian food together after work, occasionally we'd gone to the movies. Janet and her girlfriend were both deeply in the closet, terrified that someone would find out about their relationship. They were young and times were very different.

"At least," I thought to myself, that Tamblyn had a crush on someone who would at least be gentle and understanding. So I relaxed a bit and let them finish the story.

"Yesterday," the supervisor told me, "Tamblyn came to work with a card. She slipped it into Janet's desk. When Janet found it she brought it directly to me." The supervisor then got up and found the card and handed it over to me. It must have taken Tamblyn hours to do. The card had a great big heart on the cover, drawn carefully and coloured in beautifully. Then when openned the card had a drawing of Tamblyn and Janet lying together naked. There was nothing subtle here, Tamblyn was sexually in love with her instructor.

"So what happened, how did you handle it?" I asked.

"Well, I thought," said the instructor, "that I'd call them into the office together and that Janet could tell Tamblyn that she couldn't take the cards or gifts because she was an instructor. That they couldn't have a personal relationship because Janet was like her teacher. You know, the basic stuff."

I winced, "I knew it had to be done, but I knew that Tamblyn would be so hurt. Even in the most kindly hands rejection in a knife that always cuts."

"But Dave, I couldn't have imagined that Janet would have reacted like she did. When Tamblyn came in and sat down, it all started OK, Janet explained that there couldn't be a relationship because she was an instructor and Tamblyn was a client. She said, that the card made her really uncomfortable and Tamblyn had to stop."

"Tamblyn started to cry and said, 'But I love you.' Suddenly Janet went crazy on her. She told Tamblyn that her feelings for her were 'sick' and 'disgusting' that she would never have a relationship with another woman. She even said that Tamblyn would go to hell for feelings like that. Tamblyn crumbled and started to cry. I've never seen anybody weep like that before. I tried to intervene. I yelled at Janet to stop, but once she was going she couldn't stop herself. Tamblyn is devastated. Janet's still upset."

I shook my head, why would Janet, of all people do this to another person. Janet who understood homophobia, who had told a horrific story of her parents finding out over dinner just a few days ago. How could she have done this. "Could I see Janet first?" It took a while to convince the supervisor to let me see her alone, but in the end she relented and allowed me to talk with her staff in private.

Janet came in looking angry. I asked her what was going on, "I can't believe what Tamblyn did to me. She has everyone questioning why she had focussed on me. The other staff even teased me and called me "Jumping Janet the Leaping Lesbian" (whiched I guessed was a referrence to Janet's membership on a women's basketball team). When she gave me that card I was terrified that someone would blame me, or think I lead her on, or God Forbid that I'd done something with her."

After she calmed down I told her that I was shocked that she would have been so violent in her reaction to Tamblyn. Then Janet started to cry. "I sounded just like my dad, I told her she was sick and disgusting.' It was the first thing that came to mind. I just wanted to make sure that the supervisor didn't suspect anything about me. I just can't have people finding out.

Then I met with Tamblyn. Luckily I had always liked her, always joked with her when I came into the building. She came in as described. Her love had been crushed and so was she. As we talked I could see she understood that Janet was an instructor and that it wouldn't be ok to have a relationship with her.

"Do you think I'm sick and disgusting."

"No, I don't, and Janet doesn't either, she was just upset."

"I know that she does, she was so mad at me."

I called Janet in. I filled her in in such a manner that she had no question about what she was to do. "Janet, Tamblyn understands that you are an instructor and that there can't be any relationship. But she's wondering if you really think that she is 'sick' and 'disgusting'. I think you'd better explain how you were just surprised and you reacted badly. Maybe even an apology would be in order here."

Janet looked at me with loathing, I knew there would be no more friendship. I didn't care.

So she did as asked. She told Janet that she got scared that people might talk and that she didn't want anyone thinking that she was 'like that' or that she had encouraged Janet. So she lost her cool. "Of course I don't think you are sick and disgusting, I should never have said it."

Tamblyn smiled weakly and left the room.

Days later Janet had left the workshop and taken a job out of service to people with disabiliites. A decision I welcomed.

Today, in Toronto, is Gay Pride day. As I type this thousands of people are getting up and gathering for the day. Difference does need to be celebrated. Janet was not a cruel person but she was frightened that she'd be discovered as 'different'. A discovery that terrified her. Tamblyn had reached out in exploration of feelings that she didn't understand and met with a violent response. Had Janet felt that she worked in an environment that would weldome her as who she was - if her workplace had been as holistic with her as a staff as it wanted to be with Tamblyn as a client, things might have been different.

I'll watch the parade on television. Hopefully the camera will catch Tamblyn as she walks in the parade, I think this will be her fourth year. She looks forward to it all year.

The agency has changed.

So has Tamblyn.

There's something truly to be proud about today.

Passion

I felt fraudulent. Almost like a liar. But I discovered something.

Three times on this trip last trip I have been approached and asked a question. Each time it happened, it was a quiet moment. Each voice had some pain in it, pain that hinted at a story untold. Each question exactly the same. "How do you manage to keep your passion for what you do?"

This is such a hard question to answer. Though words often come easily to me, expressing things that are about such a deep part of me is very difficult. So I give answers that are true, that I believe, but that are only a few inches deep.

I talk about how, in a single generation, people with disabilities have gone from being idiots and morons to neighbours and friends. I talk about having been there at the closure of one instituion and now looking at the closure of several more - about how well people have moved home. I talk about the daily joys outweighing the momentary frustrations.

It's all true. But passion doesn't spring from such as these. It's a deeper fire. And I didn't know how to answer. Each of the three smiled and thanked me for my time, they had come to me famished and left still hungry. I knew that. It's hard disappointing someone, but I didn't know what to say, how to describe it.

Then, Camrose. We checked into the hotel and then went in search of where I was to present the next day. Another hotel. Another lecture. I knew something was wrong when I asked Joe what the topic was the next day and he told me that the file with times and topics was downstairs in the car. He offered to go get it. I told him that it could wait till the morning. He looked surprised, but he also looked relieved, and that was that.

I never, ever, ever, go to sleep not knowing what the next days lecture was to be about. Even though I've done them thousands of times, I mull them over in my head through the night, I kind of marinate in the ideas. But I broke routine. As it turned out the folks from Camrose were absolutely wonderful. They were welcoming. Wildly caring about what they did. Wanting to look at themselves and their service carefully and critically. I pulled so much strength from them. That done, we headed for Calgary.

Calgary has loomed large in my mind for a long time. This was the last stop on the lecture trail for the summer. With one exception I am home for two months. It's not that I'm not working over the summer. I'm teaching summer school here in Barrie and working down in Toronto at the office ... but I'm not hauling butt around the globe talking, talking, talking. So Calgary mattered.

The first day in Calgary was fine. I met with the organizer, who confessed to being a groupie - who could quote my training tapes that she uses in staff orientation and training even down to the tone of voice and inflection on words - she was funny and cool. When the day ended I felt it. The end was in sight. One more day. Just one more day.

Yesterday I rose to a sense of no purpose. I didn't want to do the work. Didn't want to do the day. I was exhausted from the travel, tired of the words and sorry for myself. I kept shaking myself. I had been given a wonderful audience here in Calgary. They were so alive. So willing to learn. I felt unworthy of them.

In the little lecture hall, I began the day. The words were coming out of my mouth, I was caring about them. But a couple of times, right in the middle of a story, I'd be thinking. "I'm not going to make it. I can't do it." But I'd buck up and continue. Even on the home stretch the day seemed long to me. I saw Joe up in the corner of the room. He was laughing. This was a good sign. When things aren't going well in a lecture he has a look of real concern on his face. His laughter relieved me, it was ok, it was going to be ok. I was going to make it.

Suddenly, I knew that in order to make the finish line, I was going to have to dig deep. I smiled inwardly and realized for the first time that sports heros when asked about their stamina and determination are reduced to stock phrases like, "I just dug down deep." "I just tapped into my reserves." They were trying to explain what it was to stoke the bodies furnace and the minds passion, and like me, failing.

Then I had to do it. Dig down. Deep.

And I understood, really for the first time where it all comes from. What I should have said to those who asked.

I'm sorry it's not prettier.

I'm sorry it's not deeper.

How do I keep my passion.

"By knowing it matters."

WOW

Four more. Four less.

I just got an email from my boss that when I get back we have to put together a proposal to provide support for four folks returning from an institution to live back in the community.

Wow.

And I thought next week would be catching up on work that I've fallen behind on because of my travels and instead I get thrown this. How entirely cool.

I remember the early days of deinsitutionalization, making an individual from an outcast. Finding places where people could find home. Places where the could step out side and learn to dream bigger dreams.

Wow.

I know that there are going to be hours of typing, talking, planning, reading, studying, researching. I know that I'm going to take an exhausted mind and apply it to a complex task.

Other agencies will be doing the same thing, but oddly it isn't a competition. It's more of a 'this is how we think we'd provide the service' ... 'this is how we'd welcome them home.' So that's what'd going on next week.

Wow.

The privilege of planning to bring someone home. Someone who, because of history, because the idea of freedom and community were not yet even uttered - was lost to socity - is now to have the opportunity to learn a new set of skills.

How to be happy AND free.

Wow.

Four more free. Four less caged.

Being OUT

Shopping yesterday in Camrose, I was enjoying being out and about. I didn't tell my hosts in Camrose that the day I arrived I was feeling just on the edge of the flu or a seriuos cold. I drank tea and went to bed with a prayer that I'd be up and ready in the morning. As luck would have it morning dawned gently and I was ready for the day.

After work I even felt like doing a bit of shopping so we hit the Superstore and looked for something for dinner with the idea of shopping for a few things for friends afterwards. I noticed a little girl in a wheelchair looking at me, intensely. She wasn't doing that gobsmacked kind of stare that I get from a lot of kids, she was just really intense. I suddenly felt responsible to her in some way.

When Joe came over I joked with him a little louder than necessary and we both laughed.

See, kid, you can grow up and laugh.

Job, done, I knew she noticed. I pushed myself with more spritely energy than I felt that I had. I've always been good at turning my chair on a dime. A result of being on so many hotel elevators. So when I got to the aisle I wanted I was going a good speed, I grabbed one wheel and with a whoosh, turned the corner.

See, kid, you can have fun in the chair and even do cool moves.

I waited for Joe as he went to check to see if the store hand a particular product and I noticed that the little girl and her mom had moved to another part of the store. Still in sight, but busily doing their own thing. I smiled at my little 'performance' for her. We'd finished food shopping and Joe decided to puchase the groceries and then come back to join me in the other part of the store. Clothes and electronics and gift type stuff. Out of the corner of my eye I noticed mom and child coming. I pulled my wallet out of my pocket and handed Joe two twenties for the groceries. He looked at me oddly but took the money, who wouldn't.

See, kid, you can have money and spend it the way you want.

Then they were gone and we went about our business in the store. I don't know why I felt so good about what happened. I know she noticed me, but I don't know if she noticed, the laughter, the independance, the money ... I hope so.

She's not my kid but she's part of my community. I have a responsibility to her. I'm proud we are part of the same movement and that we share a way of being that brings us commonality. I hope she went home with more than just a few groceries.

Who knows?