Tuesday, July 31, 2007
Whenever my mind reaches into memory, out of the blue, it's never good. Rarely good. Usually some past horror, some embarrassment that won't fade comes fully in to view, filling up my mind's eye. But today, for some inexplicable reason, I was hit - one - two - with memories that were different. It was like my heart or soul was trying to get a message through to me. Fully aware that I'm being overly exhibitionistic with my life right now, I'm going to record both memories for you. One today, one tomorrow.
I've mentioned that my childhood wasn't a pleasant one at home, well it wasn't much better at school. I wasn't bright, attractive, athletic, rich - I was the kid who made Valentines for myself so my box wouldn't be empty. I was that kid.
It's odd what you get used to. After a few years of being outside, I grew to prefer rain. I developed an internal life that I still cherish, I developed a keen ability to watch others without being seen, I developed an allergy to phony, pitying smiles. All that's OK with me now and, in fact, I'm OK with me now.
But there was one night. I would have just been 16. I was downtown and walking home. There was a gang of the popular kids from my grade at school and I just put my head down and walked through them. They weren't a gang, really, it was just a bunch of kids hanging out. You could almost smell their popularity as they joked and kidded with each other. Suddenly one of the girls suggested they all hop into their cars and head out of town to the Husky gas station for fries and gravy.
They were tumbling to cars when I heard a voice say to me, "You want to ride with me?"
It was Dale.
He was the coolest guy in our grade. Good looking, athletic, rich, bright - the opposite of everything I was. I looked at him in shock. I'd been tricked before and I wasn't getting caught again. I didn't even answer.
"Really, you want to go with me?" And he pointed to his pick up truck. His smile seemed genuine.
The other cars were pulling away and it was clear that he was including me. I mistrusted his intentions but I wanted to go. I wanted to just feel what it was like to be part of the group. Included. For once. Included.
I got in the truck and he put on the radio and we sped out. I had no words. I didn't know how to talk with the likes of him. So he just chatted about the music and made jokes about school and teachers and such. I relaxed into the car. I knew I didn't have to talk. And suddenly I knew that it was going to be all OK.
We had chips and gravy and though the other kids weren't really keen on me being there, no one dared say anything to Dale. Such was the power of his popularity.
He drove me back and this time I talked a bit and he seemed to think I was kind of funny. He dropped me off at my house and I felt somehow subtly changed by that hour and a half.
Not much changed at school, except there was less teasing, less to be afraid of. Dale never really talked to me again after that but he did always say, "Hey" when he saw me in the hallway.
I don't know what made him want to be kind to me that day. I don't know why he decided that I was human and deserving of a break.
But, I don't care why.
He gave me a memory, this memory, and it's a nice one to have.
Monday, July 30, 2007
Ruby is now just shy of a year old. It's been wonderful watching her grow and develop from day to day. I held her when she was just hours old and now I feel a kinship with her as she crawls around the floor. We two are the one's who don't walk.
Mike had said that she loves anything that she can climb up and that my wheelchair was going to be her new favourite toy. It was. She took one look at me rolling in to the apartment and her eyes went from recognition - "Hey, I know that guy!" - to excitement "Never noticed the wheelchair, wow, now that 's a cool toy." - to desire - "I'm heading over there to get a closer look." - and curiosity - "I wonder what it tastes like?" All those looks in just a fleeting moment.
Then she was off. I saw her coming and locked the chair to ensure that it wouldn't move and then watched her size up the chair like a mountain climber searching for the safest passage. Once she figured it out, she began to climb. Seconds later she was standing up and reaching out her hand to me. I took it and she grinned. But enough of that, she let go and then began moving carefully around the chair testing out how far she could go while still standing.
Now she's under the chair banging at the wheels and laughing. I feel her hit at the back of my legs and then attempt to climb again but finding that there wasn't quite enough room under the chair for her to stand. She didn't tire of exploring the chair for ten or twelve minutes. She covered the whole thing, grabbed at the bag on the back, tried to twist the rubber off the foot lifts on the back, chased a ball underneath and through the wheels.
I felt like the best ride at an amusement park.
When we left Joe commented that the wheelchair was a big hit with Ruby. Even though I've been in the chair since she was borne and have held her sleeping while sitting in the chair, this is the first time she noticed it.
And it didn't scare her.
It just intrigued her.
She stilled climbed up my chest, danced while standing on my knees, and giggled when her dad grabbed her off me and up into the air.
But now I am complete to her, I come attached to my wheels.
Though I'm not Dave to her yet, I'm still - "Hey, I recognize you!"
That's good enough for now.
Sunday, July 29, 2007
They were, to a one, pierced and tattooed and otherwise adorned with emblems of outsider status. One woman, no kidding, had blue dots either painted or tattooed on the backs of her legs. The dots were about the sice of a donut hole and started at her ankle and, with an inch between each, went up past her very short skirt. One fellow went by with his earlobes so stretched that you could have driven a limo through them. Another guy was shirtless in the summer heat and he wore a woman's earring through his right nipple. All had adopted that world weary, I've seen it all and every bit of it bored me, look.
Then, round the corner, comes a woman of the same age. She is using a walker, one of those cool kinds that - turn it around and you can sit down. As she approaches I notice that she's quite pretty. Her gait is odd, but she is steadied by the walker and makes quite good time coming up towards me. She like the others has a tattoo, hers is on her neck. When she gets close I see that she's tattooed the wheelchair blue badge guy on her neck. "Now that," I thought, "is cool" and immediately decided to get one myself.
But something happened on the streetfront. Even though she was beautiful, and clearly had both a sense of humour and a sense of purpose, she walked through people who did everything they could to not look at her. Not embrace her with their eyes. I guess this was too much difference.
Why is it that, often, people who affect difference really can't tolerate it? Those who are the 'decorated ordinary,' the 'mutilated mundane,' the 'unextraordinary ordinary' who do everything to stand out with a crowd, only end up being part of one? They like difference - only they like the same difference, the pretend one. I guess to them 'outsider' really meant 'insider'.
It seemed to bother only me because she made her way up the street with the casualness of one who is used to stares. Then I heard a shout from across the street and a young man, with a faux hawk, waved a heavily tattooed arm and made the 'wait there' sign. She stopped, gripped her walker with one hand and raised the other. When there was a break in traffic he ran across the street and swept her up in his arms and they kissed. There should have been movie music.
He linked his arm in hers, she took the walker in her hands and they walked out of my view. But before they disappeared I saw the look on her face as she looked at him, adoration. I heard them laugh together. Then they were gone.
It's amazing, isn't it, how the love of one good person ...
... can erase the indignities of walking the gauntlet of everyday bigotry.
Oh, and only because it matters to me, the food was very very good.
Saturday, July 28, 2007
I don't replace things easily. Long time readers will remember that I was all excited a while back about getting a new chair. I was embarrassed to follow up with the fact that the new chair wasn't exactly right and I was supposed to replace the order and get the right one. I'm still in the old chair. I desperately need the new chair, but I like this one. It's comfortable. It's got a history with me. I know it's just a chair, but it's my chair.
These things I hang on to are no real problem for me, they are just quirks of personality, we all have them. But right now, thinking about this, I realize that the problem that I have is that I don't let go of much. Once I get an idea into my head, it takes emotional dynamite to blast it out. Once I have a way of doing something, I churl inside when change is suggested. Once I have a preconception (nice word for prejudice) it's set for life. I do change, I do grow, but almost all change and all growth is rooted in the bedrock of my belief system. This makes it such that while I grow and change, that just means that I become more intensely me - a bigger tree but with a new branch.
This is not always good.
I was talking to someone from an agency who wants to change. They want to bring in a new approach to supporting people with disabilities and they want me to help them do that. I'm thrilled about that. I love it when people come to the point that they realize change is necessary and that grow comes from a radical reviewing of past in order to move on to an exciting future.
"But," they said, "we don't want just rehashed stuff you've done in the past. We want you to come with new and fresh ideas. We want you to rethink what you've been doing and why. We don't just want what you do by habit, we want what you do when you start fresh."
Hey! HEY! They're supposed to want to change. Not me.
I'm in my fifties, I'm almost past my due date.
If I was a jug of milk, I wouldn't drink me.
However much I resent the challenge, I'm going to take it. I'm going to refresh myself by looking carefully at what others are now saying. Taking a look at some ideas that I just summarily tossed out. When I was young, I used to love learning and changing and being open to new ideas. Now I get a cramp just thinking about thinking.
But, tomorrow, I'm going to make a list of what I believe.
Then I'm going to evaluate those beliefs carefully.
Maybe you can teach an old dog ....
Friday, July 27, 2007
The whole theatre was rocking with the music, laughing at the lines and rooting for the main characters. There were whacks of people up on the screen that you could identify with, empathize with, and hope with. When the movie ended the audience burst into applause.
I asked Joe if we could wait through the end credits to see if Nicky (to lazy to look up her last name but it doesn't matter) did her own singing in the film. Sure enough she did. Everyone else was out of the theatre except one mom and one little girl. The little girl wouldn't leave the theatre because she stood and danced along to the end credit music. Mom just sat and watched as her little girl cut a rug.
They passed by us and we could hear the little girl talking. "She was just like me mom. Just like me." In the light I now saw her, she had Down Syndrome and she was talking rapidly. "Everybody thought she couldn't dance but she could. Just like me, everybody thinks I'm dumb, but I'm not." Then she hugged herself and screamed happily, "She was just like me!" This may have been her first experience with identifying totally with someone else's oppression and someone else's courage. She hugged herself and hugged herself.
Mom was wiping tears away from her eyes and so was I. As I rolled by I said to Mama, "Great movie, huh?"
Mom said, "I am going to treasure this moment for the rest of my life."
I glanced over at the little girl, hugging herself in excitement, thrilled at the message that she could rise above expectations, that someone else who was different - won.
I said, "I'm going to too."
And I will.
Because ... oh hell ... "She's just like me! She's just like me!"
Thursday, July 26, 2007
1) I am grateful to live now. Though there is much to be done and many more battles to be fought, I live in a time of cut curbs and a growing sense of enfrancisement within the disability community. There was a time when babies with disabilities were cast down or cast out. There was a time of mass slaughter of those with disabilities, mass sterilization and mass segretation, not long gone but not here now. I am grateful to be here in my home - adapted, to got to work - adapted, to live fully free - adapted.
2) I am grateful for laughter. We spent three hours over lunch on Sunday laughing. Hard. Spitting tea out your nose laughing. Never noticed the others in the room, didn't care about decorum, just laughed freely. What joy. It strikes me that my fondest memories of times at work are times when we jsut laughed. Working with Bob all those years ago, we hurt from laughter - it's what I miss about him most. In fact, that's what I miss about youth, I laughed more then. I vow more laughter in my life.
3) I am grateful for dogs. I miss mine, of course, but I still see bits of Eric bits of Fred in other dogs. Leaving YAI on Friday Bobra and I waited for Joe to pull the car up to get me. We spotted a guy with a dog a few feet away. He brought her over to meet with us. She was a rescue dog, who after talking to him may have rescued him too. She let me pet her. I have always been amazed at how well dogs heads fit in the palms of our hands. She seemed to know that I needed to give her affection so she let me. She gazed up at me with pure contentment as I stroked her fur. New York's noise came to a quiet for a few seconds, a hole was created in time and I was just a little boy with a dog.
4) I am grateful for green tea. A long while back Belinda made reference to a tea PRN and I loved the idea. I knew exactly what she meant. I take my tea seriously and drink cup after cup each day. But I have special tea times. Quiet times when I let tea work it's magic on me. It is then that tea is like a massage for the soul. It lifts and calms. On our way home from New York we stopped at our favourite grocery store in Buffalo to buy groceries. I sat in front of a wall of green tea, it almost seemed like a place to pray. I chose a few new kinds I haven't tried. I can't believe this stuff is legal. I want to be buried with a bag of green tea held in my right hand.
5) I am thankful for being allowed to be in the lives of others. At YAI, training on behavioural approaches, I noticed a big beautiful bright black woman with wild hair and a huge grin. She defined beauty. All though the day, she was a step ahead of me. She outpaced me. She grew faster than the material I presented. At the end of the day I called her over and asked her if she knew how bright she was, if she understood her own talent. I encouraged her to follow that talent, and I could tell by the light that went on in her eyes, that she would remember this day. I got to do that, give that to her, how great is that?
So there are a few things I'm thankful for, I'm also thankful for the idea for this post so please pop over and visit pipecleanerdreams. But if you've a mind, tell me what you're grateful for, leave your address in the responses and we'll all pop over for a visit.
Wednesday, July 25, 2007
Joe came and joined me and we joked about something he'd seen in the gift shop and I made sure I knew what kind of treat he wanted from the glass cage. Bored, Joe went out to stroll through the booths of vendors at the front door. He promised to keep an eye on me to see when I got up to the counter so he could come back and help carry the drinks and treats.
The couple behind had fallen silent. She then offered to go get a pretzel to share, he said he didn't want to share one, if she wanted it go get it for herself. Then she said something I couldn't hear. He said that she had been sarcastic towards him for two days so why would he want to share something with her now.
I tried to edge myself away from their negativity but I couldn't get far enough away to stop their anger from flowing down from their lips over my shoulders. I glanced out the door and saw Joe making a face at me wearing large brightly coloured sunglasses. I waved and laughed out loud.
Then the angry guy behind said, pointing at me, "With all you've got you are never happy. Look at him, look at what he looks like, look at what he faces every day in his wheelchair, and yet he's happy. What's wrong with you? Why can't you be even a little like him?"
Everyone heard his outburst. He didn't care, he was angry. She stormed away.
I was mortified. Didn't know what to do with my eyes.
Neither did anyone else.
Then I was at the till and I ordered, when she was filling my order the clerk said, "For the record, I admire you too."
Being capable to order tea? For smiling at Joe's antics? For looking like me and still going out?
Then suddenly my annoyance broke and it all struck me as funny. Plop me in a wheelchair and I'm the chicken soup for someone else's soul.
I hope they burn their tongue.
Tuesday, July 24, 2007
Twenty minutes later the call is done.
And so am I.
In many ways I'm a fortunate man, people come to listen to me teach and lecture, others pop by and read my random musings on this blog, I am often employed to listen, think then render an opinion. It's good. Growing up with messages of worthlessness it has always been a challenge to see myself as having even the slightest thought or idea that would be worth a penny. This has changed a lot in recent years and self confidence has snuck in the knapsack along with other trinkets that I carry through my day.
But there are those people who seem to set about bringing down others around them. People who 'smell' my vulnerability and pounce upon it with relish. I do all I can to avoid these people but life doesn't always cooperate and there are times when I have to buck up and do what needs to be done.
Now is one of those times.
Every conversation with this person leaves me feeling heavy and stupid and totally inadequate. I believe strongly that I have managed to keep the servitude out of my voice and respond with authority. But they know, I know they know, that they got to me.
Then I think about those in care, those whose vulnerablity isn't as well hidden as mine. I wonder about those who are drawn to this field. What are they in search of? What needs do the needs of others meet? I'm sure everyone knows some who are addicted to the subjugation of others - tearing apart someone else's esteem to use the parts to build their own.
My encounter was 20 minutes.
They are not so lucky.
So this is what I'm doing. I'm looking for all solutions for dealing with this situation with this person. I'm looking to see what I do that encourages such liberties,I'm looking to see what flaw exists in the character of the other. I want to be better prepared to protect my self, next time.
I want also to figure out how to teach people in care to deal with petty tyrants - the one's with acid on their breath. I've taight about physical abuse, and sexual abuse, but this is different. This kind of abuse is so subtle that it would look ridiculous put in writing on a complaint form. You can't document tones of voices and sighs of exasperation, and little knowing nods. All those non verbal way of calling someone stupid, all those insidious ways of predicting your failure, all those people who talk kindness but whos words cut. These are the people that are truly dangerous.
But what I can't yet do I can't yet teach.
One day though, one day.
Because I've got the chance to work with an expert.
Monday, July 23, 2007
They have automatic door openers that are well placed, easy to reach and that work so I was easily able to leave the building. As I rounded the corner I heard a dog begin to bark excitedly. We've had dogs for much of our lives and it is easy to tell the 'stay away or I'll bite you' bark from the 'hey, I'm excited give me a cookie' bark. Of course there are ranges in between, this was clearly one of the happy barks.
I love the ramps down from sidewalk to curb when the curb ends and the parking lot begins without a huge lip. This was a smooth transition and I let the car go and roll quickly down, using my gloved hands as breaks. The dog, barking, was looking straight at me with his front paws dancing.
He was in a chair. That's right a doggy wheelchair. Again, I'd seen them on television and in movies but never in real life. I'm not shy about this stuff so I wheeled on over. The dog, Ralphie as I came to know him, was bouncing now. The owners were smiling broadly at me. I asked them if it would be OK to pet their dog, they joked, "We were going to beg you to, it's the only thing that will shut him up now."
We talked a little bit and they told me that Ralphie goes nuts whenever he sees somebody in a wheelchair, "sometimes even a walker" they said. "he seems to think you're all one breed." Ralph wasn't really a dog of distinction and they confirmed my suspicion that he was just a mutt. He'd been hit by a car a few years earlier, they explained, and they had two options. Death or disability. The operation was costly but worth it. Ralphie adapted to the chair and while there are some considerations for toileting (I didn't ask) there was not much difference.
Now I'm sitting chatting with them and Ralphie has pulled his chair up beside mine and has rested his chin in my lap and is going into a trance while I pet his head. I know how to pet dogs, I miss petting dogs, this now is as much for me as him.
Joe comes out of the rest stop and sees us. He told me later that he couldn't believe his eyes. And came over to join us. We could have all talked forever but we had a long drive yet ahead of us. I bid farewell to Ralphie as we headed back to the car. He whined slightly.
I turned to them and asked what that was about, his excitement at the wheelchair and his obvious slight upset that I was leaving.
"I don't know," she said, "Sometimes he feels alone, even with us, I think."
Ralphie understands, in his doggy mind, about isolation even amongst those who love us. He understands the need for moments of community. I think this is the way we are all growing as disabled people. What we are beginning to understand. That as different as we are from one another, we are still all one breed.
Sunday, July 22, 2007
I'm in New York City, it's early Sunday morning and I'm excited. We're going to meet our old friend Bobra Fyne for lunch. I can't wait. First we searched the internet to find a great vegetarian restaurant and second we're going to have a chance to really chat with someone we've known for a long time but seen seldomly.
We learned that a few months ago Bobra had to undergo serious surgery - for, um, women's problems - and that because of surgical complications she had a long recovery process. Well, that just ramps up our excitement about seeing her. We want to see her well, know that she's ok ... but there's something else.
Recently we realized that there are three reasons that we know that we are long past middle age. Yep, we are 55 and that's only middle if we expect to make 110. Beyond age, there are other ways of knowing that youth is a thing remembered and that you are somewhere between dottering and drooling. For us ...
1) We got a paycheck in the mail and used it to pay our bills and decided to bank the rest of it. And we were excited about this.
2) The last cd we bought was from a rack in the drug store. Carly Simon's greatest hits for $4.99. And we were excited about this.
3) We found ourselves, yesterday, having a really interesting talk about bowel movements and sore joints and hearing loss. We know we're going to see Bobra and hear all about her time in the hospital and in recovery and ... and ... and we are excited about this.
Yes, we find discussing our various physical complaints, our dealings with doctors, our aging, fun!
Of course, I have the trump card ... anyone notice the wheelchair?
Bring on Bobra, I know she's got some good medical horror stories, I've saved a few up myself.
Saturday, July 21, 2007
It's still there.
What happened was this. For about 6 months now I've been able to both push my wheelchair and the grocery cart at the same time. I use one of two different methods. In wide aisles I ride beside the cart and grasp it and shove it forward by gripping the side of the cart and shoving. Alternately, where it is more narrow, I roll behind it and shove it forward and simply follow along behind. It's taken me a while to get the knack of this and I'm kind of proud that I don't need assistance to make my way around the store. Joe can run off and get something while I take the cart with me, just like the days, pre-chair. More of my life reclaimed.
So, we were heading for the checkout tills and I noticed that Joe had only picked up one package of cresent rolls when we needed two. So he headed off to get another one and I began towards the till with the cart. I was very nearly there when a woman appeared out of nowhere and said, "Let me help you with that," reaching to grab my cart and take it to the till.
I was quite polite and said, "No, that's OK, I can do it myself."
She became almost, I don't know, angry. She grabbed the cart quite forcefully out of my hand saying, "It's good to help." She could see that she'd upset me so she almost slammed the cart up against the counter and strode off.
Her need to help me far outweighed my need for independance.
I don't know why but tears sprung to my eyes, I was really upset. I felt that I had been abused in some fundamental way that I didn't and still don't understand.
And I can't shake the feeling.
Yet, I fear I've done this same thing to people in my care several times over the years. That needs got mixed up.
And mine always won.
I am so deeply sorry.
Abuse of independance may not be illegal but I now know, it sure is wrong.
Friday, July 20, 2007
Everyone gets a sheet of paper titled 'Find Someone Who' and then a list of 16 descriptors of people. Things like 'drove more than 20 miles to get here today' or 'can identify 5 parts of the male or female genitalia' and 'was told the facts of life by parents'. It's a fun way to mix people up, get them talking and really break the ice. We are going to spend 4 days together talking about sexuality, so we might as well begin to get comfortable with each other.
15 minutes after the exercise began and people were finding their seats again, I asked them which one was the hardest to find signatures for. "Told facts of life by parents" several called out. I then asked how many were indeed told the facts of life by parents. 4 hands went up in a room with more than 30 people in it. Not only that, these are people who are significantly younger than me. A generation different at least.
It's almost abnormal for us 'typicals' to be given sex education by parents. Yet I hear so often complaints by staff regarding the reluctance of parents with kids with disabilities to talk to thier kids about sex. They shake their heads and make the assumption that these damn parents are failing yet again in their duties to parent their kids. Further, they assume that the parents, by their reluctance to talk to their kids about sex are naturally opposed to the whole idea.
Why is it that we demand of people with disabilities what we don't demand of our selves? Made beds. Healthy diet. Cheerful attitude at all times. The list is endless.
But why too, do we demand of parents of kids with disabilities, what we do not expect from our own parents, or of ourselves when we parent? Why do we reserve our harshest judgements for moms and dads who are constantly tired from battles that most other parents never have to think of fighting - the right for their kid to go to school with others. Life's tough enough without the 'attitude' they get from staff whose expectation of those parents goes beyond reasonable and into the absurd.
A realistic view of what it is to be a parent will take us a long way I believe.
It's normal for parents to cease up at the idea of talking sex with their kids.
It's normal for kids to be horrified at the idea of talking sex with their parents.
Just as long at the job gets done, we're all cool.
Less blame, more action - please.
Thursday, July 19, 2007
Having grown up with disabilities, neither of them had the opportunities to learn the ways of love and the rules of relationship. Living in same sex environments gives one precious little opportuntity to practice flirting, dating and enchating conversation.
I remember reading an article on a scientific animal study (though I don't really approve of animal studies) and in that study they took new borne mammals from the parents and the troop. The infant males were placed in one area, the infant females in another, they never interacted cross gender, they never saw their parents or indeed any member of their species, interact cross gender.
When they were grown they were placed together and researchers could see how much of sexual behaviour was learned and how much was instictual. What they found was that all those who went through the experiment had their sexuality destroyed. They had lost the art of heterosocial activity with some tragic consequences. The article ended by making a huge mistake. They made a claim.
"This of course would never happen within the human community."
Um, yeah, it did.
And I see the results of that separation in front of me. Two people tenuously working their way back to each other, back to the desire for human touch and comfort. Two people who are willing to work through their fears, their lact of experience, their sense of personal damage - just to be with one another.
They set groundrules in these sessions with their counsellor and talk about where they are and what they need to learn, to do, to change, in order to be better in relationship with one another. I had been there at the beginning of this process and helped to design it, now I'm here meeting them to review their process and see how it's going.
And their acheivement shows in the light in her eyes.
And in the gentle touch of his hand on hers.
Wednesday, July 18, 2007
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?
Tuesday, July 17, 2007
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.
Monday, July 16, 2007
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.
Sunday, July 15, 2007
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.
Saturday, July 14, 2007
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!
Friday, July 13, 2007
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!?
Thursday, July 12, 2007
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.
Wednesday, July 11, 2007
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.
Tuesday, July 10, 2007
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.
It's an ugly thing seeing a grossly obese guy doing a little jig. Let me get my breath back.
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.
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 ...
Monday, July 09, 2007
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.
Sunday, July 08, 2007
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.
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.
Saturday, July 07, 2007
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.
Friday, July 06, 2007
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 ...
Thursday, July 05, 2007
A Tale of Two Boys
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.
Wednesday, July 04, 2007
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.
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?
Tuesday, July 03, 2007
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.
Monday, July 02, 2007
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.