Sunday, September 30, 2007
Sometimes Joe just doesn't get it.
On the drive home I sat quietly flipping through the book discovering things you need to know like there is 10 million, million, million different bacteria in human poop. There's things in there about pus that are a revelation. I'm reading these things out loud to Joe who is oddly quiet. Then I come upon a fact. I've turned that fact into a quiz. Here, try it out ...
The earliest depiction of a person with a disability at work was in ...
A) 108 AD
B) 1580 BC
C) 1248 AD
D) 1824 AD
Do Do Do
Do Do Do Do
Do Do Do
Do Do Do Do
(The theme song from Jeopardy if you don't recognize my singing.)
If you guessed 1580 BC, you'd be right. There is a painting of an Egyptian priest ... you read right ... priest ... with polio. I looked him up on the computer by Googling three words, egyptian priest polio, I click on the search button and suddenly I'm faced with a huge number of hits. All about this guy named Rom who is depicted with 'withered leg and staff'. One of the hits goes further and tells of this Eqyptian Pharaoh with a disability. When the mummy of Siptah, a Pharaoh who died around 1193 BC, was discovered, scientists found that he had a seriously twisted leg and foot and they attributed the disability also to polio but with less certainty than with Rom. What was certain about the whole thing was that these two guys, without question, had disabilities, and also without question held powerful positions in Egyptian society.
I have one question.
How could we, as human beings, at one time accept disability to the extent that it didn't prohibit people from being in powerful jobs, and now in the age of 'tolerance' have people with disabilities unemployed at a remarkable level? Why is it that people with disabilities have trouble even getting an interview? I feel incredibly lucky to have become disabled after I had spent a career building a reputation and a place for myself. There have been few barriers for me, but only because I was already employed, already 'in'.
Those early Egyptians had it going on. All I've ever really read about history before was that disabled people were discarded, disposed, disposessed. And now I find two guys who must have been pretty cool. I feel like sneaking into schools and finding kids with disabilities and saying, "Hey you heard the one about the Egyptian Pharaoh with withered limb?"
Well, I'd say that little fact was worth a tad more than a cent.
Now did you know that if you lived long enough with smallpox the whites of your eyes will turn completely black ...
Saturday, September 29, 2007
We were going to Ottawa to do a presentation there and we could easily go through Orillia and then take the long route to enjoy the colours. So we got up early on Wednesday morning, piled into the car and headed to the college. I didn't tell Jef we were coming, he'd said, 'Drop in' and that was my intention. We found parking and a couple of very polite students gave us directions to room C210, the room the class was held in.
I knocked on the door and waited. The door opened and Jef's face as a mixture of pleasure and disbelief. He shook my hand and then turned to the class and said, "We have a surprise guest today." I rolled in, grinning. There were at least twenty students there and all had that eager look that you see on those who have a goal. I turned my chair to face them and told them that I was on my way somewhere else so I didn't have a lot of time. I gave them three questions.
The last question was from a young woman on my left. She wanted to know what advice I'd give them as they were preparing to enter the field of disability. I told her that I wasn't really good on advice like that but I'd give it a shot.
"You are entering the field of human services," I said stating the obvious, "remember then that your best resource will always be yourself. Your own humanity. Don't be fooled by someone's difference. When you don't understand why someone is doing what they are doing, when you just can't figure them out, retreat to yourself. I once worked with someone who engaged in severe self injury. I couldn't understand why anyone would hurt themselves. There were no clear antecedents to the behaviour, no clear benefits to it either. Then I retreated to self and wondered, 'when do I engage in self injury' ... surely I do, I bite my nails, I chew the inside of my cheeks, I drink too much, smoke too much, sleep to little. Suddenly, I knew that I responded to anxiety, depression, fear, by hurting myself. In that moment the individual I was thinking about became less bizarre, more ordinary, more like me. More than that, I had a place to start ... an understanding to grow."
"If you use your time right, you will discover, too that you are on a parallel journey with those in your care. You will be asked to think about things that most people avoid. You will be asked to challenge yourself in ways that people find painful. You will be asked to review your ideas and your beliefs and your motives regularly. You will have the opportunity for personal growth that is rarely offered to us these days. The best thing, for me about being in human services is that at the end of every year, I am different and I am changed. Contact with others creates the opportunity for contact with self. Be open to that growth."
I was looking at her, my inquisitor, when I was answering, but I was talking more to myself. The question got me thinking about my life here in human services. I was so much older than the students, I had trod the path that they were embarking on. It felt like a real honour to have the chance to talk to them, there in room 210.
On the way to Ottawa I was fairly quiet for a long while. I was answering that question a thousand different ways. Wishing I'd said things differently, wishing I'd focused on differing issues, rewriting what I said. But life is life, what you say you say, so I tired of the self examination decided that I'd enjoyed my journey thus far here, working with others, now it was time to enjoy my journey to Ottawa.
"That tree is beautiful," I said as we passed an incredible maple.
Joe smiled and welcomed me back to the trip.
Friday, September 28, 2007
As we had lunch, Joe and Mike had the messy grilled cheese and I had falafels smothered in garlic dill sauce. I wouldn't ordinarily tell you about the food, but it was good, I'm fat, therefore food matters to me. I had mentioned hearing someone talk recently about 'two word philosophies' ... it's a challenge to put the things you believe into two words. We had fun coming up with combinations.
"Cool matters," was the first that Mike came up with.
"Age gently," was Joe's.
"Fat's phat," was mine.
Then we were off and running. It turned into a fun conversation and we went round and round and round again. Once in the car and the Dixie Chicks were playing in the car, I thought more about this whole idea. Here are some that came to mind when thinking about what I do and who I am.
Two words can contain a lot of wisdom, we discovered as we chowed down. Two words can reveal a lot about one's character and one's vision. As a writer, I find words flow fairly easily for me and it was good to slow down and try to use fewer words with more meaning. I'd like to hear your two word philosophies so ...
Thursday, September 27, 2007
Right now I'm in a hotel in Ottawa all by myself. Joe is in the next room over but there is no adjoining door so it's just me here. Since I became disabled I have not ever been entirely on my own, not really at all. As such I've become, I realize as I sit here, a bit dependant on Joe's physical presence. Not that he does every little thing for me, or that I can't do things on my own, but just having him around makes me feel like ... if something happens, like I fall which I am prone to do, there's someone to call out to.
"I've fallen and I can't get up."
And though the bathroom is supposed to be accessible, the toilet is one that is grade school height and the bar is way above it. There is no side bar. We've agreed, no using the toilet unless I call him back over, the bathroom is a Dave-tragedy waiting to happen. But the bed is very small and the room was deemed to tiny for a roll-away cot, a Z-bed. So the conference people offered Joe his own room, I suggested that he take it. He's a bit to old for cots anyway.
All this time, two years, and Joe's presence kept me from realizing how much of my life, my independance and my sense of personal security my disability has taken. All this time I thought, so what, no big deal, I can manage just fine, thank you. And I was wrong. "We" can manage just fine but maybe, truthfully, "I" cannot.
This would be a depressing realization. But in fact, it's not. Over the years we've relied on one another in greater and lesser amounts. There are many things that Joe completely relies on me for ... they are that 'that's you're job' kind of things. This is a little different because I do what Joe does not want to do, not what he can't do. Here, it's abit more of the 'can't' situation.
But what's got me thinking here about how Joe has managed for two years to let his assistance really slip under the radar. His manner hasn't made me feel burdonsome, or like I should be constantly in his debt. He has provided support to me that has allowed me to continue on my path, to strive after my goals, to be the master of my own destiny. He has never for a moment, now that he has the power of assisting, misused that power. He has shown me that power need not always corrupt.
I will make it through the night, of course, if I fall I just have to crawl to the wall and bang on it. Or as Joe put it before he left a few minutes ago, "Knock three times on the wall if you want me, twice on the pipes if the answer is Joe, Now!"
While I do not see Joe as my 'staff' or my 'carer', I do see in him the elements of what it takes to give support without taking leadership.
It's something I'm going to think more of, take more notice of, even talk to him about. There's a staff training in this, maybe even for me.
Wednesday, September 26, 2007
Her arms up, her chest out, she flung herself into a new world.
She's just over a year old and now the floor she crawled on only minutes ago is being explored anew. She looked to us for approval and then she was off. Around the banister and down the hallway, back to the front room, around and into the kitchen. One minute she couldn't walk. The next minute she was running.
Ruby's world has changed.
With her 'forth into the world' posture - arms up, chest out ... it was hard not to contemplate what kind of world she was thrusting herself forward into.
She already has decided that I am cool but my wheelchair is cooler. She likes it when her Dad runs her around the lawn while she sits in my place in my chair. She likes it as a jungle gym. And she's met Mickey, Mike's friend with an intellectual disability. Last time he was up to visit Mike, he held her and she looked at him and decided that he was OK. She comes from a mix of ethnicities so her birthday party is a little UN.
She is only a year and has experienced more integration than my parents have in their life. She is only a year so she hasn't yet learned that some amongst her acquaintences have less value, so she values all of us equally. She is more concerned about kind, than smart. She is more concerned with generous, than mobile. She is more concerned with the content of the characters in those she meets.
Ruby's walking today.
We went out to dinner to celebrate and she took over the pizza joint. She'd run back to her dad and be swung into the air. She'd tire and grab onto my tire to rest a bit. At one point she was so excited she just put her head back and laughed.
On our way out Mike pushed me and she walked beside me.
She's walking beside someone who's rolling.
I don't know why but I think that's cool.
Tuesday, September 25, 2007
I then started thinking about role models that I had while young ... there were a few ...
The high school janitor had to be one for me. He seemed to gather about him the discarded kids. The ones that had no potential, no ranking, no respect. This guy seemed to be able to relate very differently to us all than anyone else ever did, or cared to. The cool thing about him is that he wasn't at all social worky or filled with folky wisdom, in fact he did everything he could to establish himself as an alpha male kind of guy. What he had was time. And humour. And a capacity for looking at us clearly. He liked to stand out side the building and have smoke and invariably there'd be one of the school's losers standing with him. Often that would be me. I have a variety of janitor memories. Oddly, still, they are quite private.
When I was a boy, I saw the movie "The Miracle Worker" with Patty Duke and Anne Bancroft. Instantly I was taken by Annie Sullivan and remember thinking that it was incredible to have that kind of impact on someone else's life. To seek out another, to make the world available to someone, to capture but not cage another soul. It moved me greatly and deeply. It was that movie that had me thinking about working, somehow, with those with disabilities. To this day, the movie remains one of my favourites.
Ruth was an older woman who ran a shop around the corner who loved to smoke and drink scotch. She was full of tales from a live well lived, she wore her 'outsider' status as a badge. It was amazing to come under the sphere of her influence. She was fascinated by my work with people with disabilities and liked to hear me talk of my work. It was Ruth who first prodded me to speak up, to not be shy about my opinions. It's hard to believe now that I lecture around the world, that there was a time when my fear of public speaking, of being in front of others, was debilitating. I remember telling her that I was going to a conference for a day on sexuality and disability. She said, "Remember, speak up." And then at the conference someone said something so disrespectful to the sexuality of women with disabilities that I was shocked. Ruth's voice was in my head and my hand went up. I said a sentence, a whole sentence, in front of others. I got applause. That was the first time I'd ever spoken in public. It wasn't the last.
I still have role models, I still have heros, I still admire others. While I felt a bit uncomfortable with being praised thusly, like the janitor would have been, it was nice of her to stop and tell me. It sent my down memory lane ... and I'm still there.
Monday, September 24, 2007
At first I didn't think much about what I did and why I did it. They had behaviours that needed controlling, I was the man for the job. I wrote token economies, I wrote differential reinforcement programmes, I wrote strategies for establishing what we called 'instructional control'. And I liked it. I liked the briefcase. I liked the status. I liked having an office. I liked coming and going as I pleased.
Then came Nate. A lovely little boy with Down Syndrome. A boy that would bring about a revolution in me and a resolution that I have since not broken. He was a joint referral from both the school and home. Seems dear old Nate had a problem with compliance. He had defiant behaviours. He was oppositional. All this and in grade 2. He was on the path to notice. Sitting in my first meeting with parent and teacher I heard story after story about this kid who refused to participate in circle (outrageous) who refused to wash his hands before dinner (unthinkable) and other childhood misdemeanours.
I took notes, organized myself. I put together a fairly simple baseline. But it didn't work. Nate had had a good week at school and a good week at home. Next week was the same. Nothing showed. They swore to me that this was an aberration. That this oppositional kid was 'manipulating' us all. The third week in there were two incidents at school and one at home. They sat there with data sheets in hand, both mom and teacher, with a 'see, see, see what Nate gets up to' look on their faces. Both school and home thought that I had enough data now to put together a 'Compliance Training' programme, oddly, so did I.
Nodding agreement while I scanned the data, I asked them to do a different form of data over the week or two it would take me to write the programme. This data sheet would have them tick off the commands he followed in his day and 'x' off the commands that he refused. They both agreed and we all felt very, very, scientific.
I read the data sheets more carefully upon return to the office. Nate's outbursts, in the cold light of calm, seemed fairly typical for a kid. I got out the calculator. Three acts of non-compliance in three weeks. That works out to ... wait ... 3 incidents divided by 3 weeks ... 1 per week. Where was this kid who did all the things I was told. Then I realized that if that meeting they gave me examples that had happened over time. I didn't ask for the frequency or regularity of the 'outbursts of defiance' I only wanted examples of them. Dumb. I called a co worker with children into my office and asked if she and some of her mommy friends could take the same data for the same week.
Intellectually interesting, but nonetheless I had a programme to write. Compliance Training. When we all next met, I had the programme in hand but I asked to see the new data sheets first. Mom and teacher handed them over, with quick calculations I found that Nate complied to just over 90 percent of requests and demands. He hesitated on about 4 percent. He refused about 5 percent of the time. I looked up at them and said, "This is wrong." I put my programme away and said that Nate was, if anything, over compliant. They were upset. I didn't care.
Back at work I took the data sheets from the mommies. I of course had no data from schools but I found that typical kids non complied and hesitated at a much, much, higher level. Some kids up to 40 percent of commands and requests were refused or hesitated in follow through. None of these kids was labled a behaviour problem, an oppositional child. None of them was on a programme. In fact some of the parents were outright a little proud of their child's independent streak. Remarks like 'no one pushes her around' and 'he knows how to stick up for himself' were written by parents in the margins.
But here's this kid who lives in the margins and he's got his behaviour under a microscope. I went to one more meeting with the school and with the mother. I told them that Nate's behaviour was better than the norm, that in fact I felt he was over-compliant, that he needed to learn how to stick up to both of them a little bit more. I felt that he was being groomed as a victim and that I would have no part in that grooming. I told them then, what I believe now. Non-compliance is a skill, not a behaviour. Aggression is a skill, not a behaviour. That if they wanted Nate to grow up well, they had to teach him how to be defiant, to be a problem when he needed to be a problem. That was a programme I would write. I was ejected from the school.
My boss got a call.
I was in trouble. I tried to explain my reasoning. She didn't care. I tried to say that someone had to confront the teacher and the family. She didn't agree. I tried to say that at times it was more important to be an advocate not a programmer. She didn't think that was our job. The end result was that the case was taken from me and given to another therapist. I took my programme out of the file before passing it on. I destroyed it. If this kid was brought to his knees it wouldn't be because of me.
Now I was asked to write a letter of apology to the school with a copy to the family. "Fire me," I said, "I won't do it."
The therapist who got the case met the family, met the school and met Nate. And turned down the request to do a programme. One could sense that a moment had come that had changed us all.
After much furor a decision was made.
We would never, as an agency, write a compliance programme again.
We'd work on cooperation.
But not compliance.
It was on September 24th that I decided that there was a line I would not cross. And didn't. It was then that I realized I would always have to look at my feet before making a move, to see if that line appeared again. It has, often. And it is on the anniversary of that date that every year, I remember Nate, remember the fight, remember the decision. I ask myself again, am I being careful? Really careful with the trust given to me. And every year I discover ...
There is a line I will not cross.
Nate would be an adult now.
I hope he's unbowed.
Sunday, September 23, 2007
I spotted a store called 'Teaopia' that sold ... umm ... tea. So we stopped there first and a really charming clerk spent a fair bit of time with us pulling out these huge cannisters of teas from around the world and letting us experience the fragrence and soon we had a line up of three bags of expensive tea. The clerk was great, it was like he didn't notice or didn't care that I was in the chair. He realized right off that I was the tea junkie and therefore didn't have that annoying habit that some clerks have of speaking to me through Joe. Nice.
So we went along the shores of the resort, popping into this store or that, finding a cute little winter coat for baby Ruby at H and M, and finally picking out the glasses at Lenscrafters. The clerk there was one of those automatons. There was a pair of glasses that I thought looked great on Joe but he had some concerns about the lugs. I put them on so he could see that the lugs were invisible when on. The clerk approached. Saw me in the glasses. "They bring out your eyes," she said, seriously, she said that. Joe said, "Umm, I'm buying the glasses," she waited until he put on the glasses, "They bring out your eyes," she said, again. Joe has blue eyes, I have green. Uh, huh, but despite her we bought the glasses. Done.
Then we decided to have a bite at the food court. I was wheeling around looking for the exact thing I wanted to eat. The food court has a long wooden railing around the seating area. I like these because I pull myself with one hand using the railing and wheel with the other hand. I go much faster, it feels freeing. When I get to the end, I know exactly how to release from the railing and make a sharp turn. A woman watching me said, "You are sure good in that thing. I'm impressed." Now, I know that she's being kindly. But, really. She's impressed because I can wheel myself and make a turn? It takes that little of an accomplishment to make me an inspiration? Really. Is the bar set so low that merely getting about is worthy of comment? Really.
A while back Elizabeth McClung, a fellow OUCH blogger, who I admire because she wrote an incredible novel, Zed, that I'm now reading. This to me is a REAL accomplishment. A little bigger than turning a corner in a wheelchair. Anyways, Elizabeth, wrote an OUCH blog full of complaints about having a disability. I love how she challenges orthodoxy even on OUCH. So, she asked others what aspects of disability are worthing of a good moan. I wrote in my commets to her blog that I found that being in a wheelchair means that the oddest people feel that they have a right to break into my world with commentary. I thought of Elizabeth in the 'shopping resort' looking at this woman with the beautific smile. She'd complimented a cripple, surely there's a special part of heaven for her and her ilk. But, I was in a good mood. I had expensive tea in my wheelchair bag, I was about to lunch with Joe, my day wasn't going to turn on this incident. So I smiled back, and refrained from congratulating her on the fact that she seemed to balance really well in her chair, as good as I did in mine. Enough.
So today, Sunday, we're going out again. I think I'll thrill the world by pulling myself up the ramp at the theatre. What an orgy of awe that should bring.
Saturday, September 22, 2007
Such is the only way to describe Lynne Seagle. An audience was on their feet, cheering, the moment she finished her presentation in Toronto. Lynne spoke as part of a series of speakers that had been brought in to encourage and challenge us to look at ourselves, our services and our relationships with those in care. Believing that an agency is as good as its worst staff, Lynne talked about how to create healthy agencies with happy staff providing holistic care.
I don't think that audience was expecting what it got. Lynne isn't a speaker with charts and graphs, she's a speaker with passion and conviction. She isn't a speaker who talks about what she did ten years ago, she talks about what she does now. Lynne cares about people with disabilities and she shows that as an administrator that cares about her staff.
Though much affected me as I listened to her present, laughed at her stories and marvelled at the quickness of her wit. I was really taken when she challenged us to imagine what an agencies service would look like if every staff understood that they were in charge of their own integrity. I know that we all are, of course, but I for a second imagined it. It was awsome.
At Vita we are thinking of trying a new idea. We want to see what a 'Pledge of Service' would look like. So I sent out an email to all staff asking them to ponder a bit and send me a description of the qualities of a good staff, to tell me about the best they've seen, the best they've been.
The emails have been stunning. Almost all coming from direct care, they varied in form from a list of a few words to long letters. Some of them moved me in their simplicity, all of them moved me in the depth of caring that had been poured into those words.
When I got home from dropping Lynne off, I sat down at the computer and re-read those letters. I shouldn't have. They got me excited. They got me thinking. This isn't the best frame of mind to go to bed with. So, at one o'clock, I got up and spent a few hours now putting together the first proposed draft of a 'pledge of care' and before getting shy with it, I put it into an email and pushed 'send'.
Even if we don't go this route, it's been a good exercise for me. To try and put into words what my personal pledge is to people with disability, to understand what living in integrety in service meant.
A day with Lynne Seagle is like taking a brush to your soul and scraping off the barnacles.
Lynne, I can't thank you enough.
Friday, September 21, 2007
On our way down to work Joe was talking about getting the car washed by a disabled guy who likes to make a few extra dollars. I didn't know that Joe had set an appointment to have the car washed, didn't even realize the car needed washing. I'm the kind of guy who is surprised that carpets have to be vacuumed. What does 'dusting' mean? So, anyways I nod and appear interested (the two things you need to learn to do to stay in a successful relationship).
The problem, as Joe explained endlessly, was that the time he booked no longer worked and he needed to change the time. The decision was to find the guy and change the appointment time. Scintillating conversation and problem solving, no? Well, the best laid plans ... the guy wasn't around so Joe left a message for him with the new time.
He did all this with a sense of real urgency.
Well the guy pops into my office to say the new time isn't good for him and rebooked for next week. I called Joe. He was concerned, "That was OK with him?"
"Yeah, it was."
"Good," he said with a voice that told me he was relieved.
"Why is this such a big deal."
"People promise things all the time, then they don't keep them, or don't show up. You know the guys who stand outside the beer store begging for change, everyone says 'I'll give you what change I have on the way out and then they rush away not looking up? Or you know the guys who get their car squeegied and then laugh while driving away? Poor people, diabled people, children, all have people promise them things ... to get them to shut up, or to get out of an uncomfortable situation. You know people do that right?"
"I don't. Because equality is something you do as much as it is something you believe."
I knew that.
Thursday, September 20, 2007
The laughter began slow, low, like it had a Southern drawl. Then it built and built, one laugh giving encouragment to the next. Finally a full throated laugh filled the elevator with pure, unadulterated mirth. We, Joe and I, carrying foodstuffs in for a meeting later that day, began to giggle. We had no idea what had caused the laughter or who was laughing, but it didn't matter the laugh we heard tickled the bottom of our feet.
By the time we reached the second floor we too were laughing. I'm smiling here as I write this. It was so good to hear that kind of laughter. Unrestrained, gutbusting, trumpets of Jerhico laughing.
Not the restrained giggle of polite company.
Not the haughty smile of the 'better thans'.
Not the forced frivolity of a drunken partier.
Real, genuine, joy.
And I realized, I don't laugh much anymore. I find much funny. But sad funny, awful funny, I can't believe it funny. Joyous funny has eluded me these last few months, nay, years.
I don't know how it got left behind. I know I was berated for my laughter as a child ... too loud ... too brazen ... too noticable. I worked at bringing it down, bringing under control, finally ending it altogether and replacing it for the slow, quiet laugh that I have now. It's acceptable, it fits in, but it's not the one I was borne with.
I notice this in others too, I notice how when someone laughs too loud at something funny at a movie that everyone glances at each other ... like the laugh rule was broken. But the laugh I heard this morning was the real deal. It was the 'may interfere with aircraft frequency' kind of laugh. It was a laugh that could have parted the Red Sea. A hardy Hardy-Har-Har.
First time, in my adult life, I heard that laugh was when working in a large institution. A woman with a disability who had been given the job of carting food down a corridor had somehow slipped. There was scrambled egg everywhere. Everytime she tried to clean it up, she slipped down. It was in her hair, her clothing and all over the walls. We all stood, helpless to help her, outside the radius of egg mess. Finally when she tried to stand up holding onto the cart, she lost balance and went down again, this time bringing everything down with her.
She gave up.
She laid back and laughed.
A huge laugh. A from the fingertips, from the toes, laugh. Laughter filled the institution hallways, it coloured the air with humour, it was loud enough to crack faces, it was warm enough to melt frost. Then we all laughed. Pale imitations of the real thing, but we laughed. We who lived free laughed our restrained appropriate laughs while she who lived abandoned and caged - laughed large. At least she was left with an uncaged laugh.
I want to laugh more.
I want to have a pull a muscle laugh.
I want my laugh back.
But if I can't have that ... I'll settle for hearing that laugh, at least a few more times, in my life.
Wednesday, September 19, 2007
I didn't, my friend Lori from BC sent it to me. She said that she was cheering when she heard the kids interviewed on CBC radio. Her note to me said that she didn't forward many articles but that she knew that I'd like this one. I'm thrilled that she did.
Somewhere in Nova Scotia a new kid started at at new school. Anyone who ever switched schools knows how that feels. The young man came to his new school wearing a pink shirt. The school bullies set upon him and called him all sorts of names, making inferences about his sexuality, in doing so bullying him and terrifying every gay kid in the school.
Two teen boys thought this was ridiculous and went out and bought 75 pink coloured shirts and distributed them to all their friends and all the kids who wanted to stand up to the bullies. When the new kid arrived at school a couple days later he saw a sea of pink, all kids who didn't know him showed him that he wasn't alone, that there were those who would stand with him and against the bullies. They even saved a tee shirt for him to wear with them. Along with the shirts they brought pink material to make arm bands and head bands. In all, over half the kids at a school of over 800 wore pink that day as a statement against bullying. You can read the whole story by going to http://www.thechronicleherald.ca/Search/858884.html
A great story. The article in the paper has a picture of these two teen heros wearing pink shirts and grinning into the camera.
The article doesn't say but I believe that every kid in that school is safer from bullies right now. Fat kids. Frecked kids. Disabled kids. Gay kids. All of them. Bullies don't expect others to care. They depend upon the apathy of others to get away with what they do. All that it takes for evil to succeed is that good people do nothing. This time, the good people did something. This time, the bullies lost. This time, so maybe next time too. All it takes for evil to succeed ... wait ...
Evil lost in Nova Scotia.
I for one am cheering.
Tuesday, September 18, 2007
This was said to me recently by someone who has a bumper sticker approach to life.
"Focus on the ability not the disability."
This criticism was leveled at me by someone who thought that I took disability too importantly.
I'm afraid I'm out of step with where our philosophy in service to people with disabilities has taken us. Partly this is because I now have a disability, but partly this has always bothered me. I don't think that 'labeling' people is all that awful. I think the issue is how we value the difference that is labeled. I think that putting difference on a heirarchy is the problem. For me, I don't know how we could have a disability community without the concept, the reality of this thing called disability. I don't think the gay movement even got started until the gay community got over it's own fear of difference ... the 'we're all the same as you' stage. Similarily the women's movement came of age when it began valuing the feminine difference rather than proclaiming masculine equivilancy.
"Don't call me disabled."
Said to me by a self advocate with an intellectual disability who refuses to identify with his disability and his community. His fear of his own difference is his major handicap. He lives a life on the borders on normalicy and even though he has a key to open the door to his own community, he refuses to use it. Doesn't ever, ever, ever want to be seen with someone else with a disability. This to me is profoundly sad. A waste of time, a waste of a life.
Go ahead and sew the label 'disabled' on my forehead. You might as well, the wheelchair gives it away anyways. Don't try to stop me from accessing my disability community, my trolling through the disability blogs, my chatting with other crips when I'm out and about, my reading books and stories about those with disabilities. It's my community, it's my patch of grass, I'm not going to give it up or give it over.
Sure I want access to the whole world, but I want access to my own as well. I'm not interested in the 'I'm not crippled cripples' I find their lack of courage to identify boring and sad. I have always liked people who are in your face. Who are exactly who they are. If you are going to be Christian BE Christian ... not a wishy washy apologist. If you are going to be a philatalist wear stamp ear rings. If you are going to be a Trekkie, learn Klingon.
So, I'm thankful for the label 'disabled', it's given me a movement, it's given me a community and it's given me purpose. Should others try to use that word, that 'label' to take things away, that's where the fight begins ... not with the word but with greedy bigots who want to stuff my rights into their bag. I refuse to bow to pressure to deny my disability in order to prop up the idea that disability is something to be denied. Forget it, I'm too old to spend energy on self delusion for the sake of others.
Disabled ... count me in ... I'm one.
Monday, September 17, 2007
Once into the hotel room, I hooked up the computer and looked up "Beautiful Joe" and discovered that Joe had been a dog that lived in Meaford in the late 1800's. He had belonged to a deranged and abusive man who over time had mutilated and disfigured the dog. Hacking off ears and tail, treating the dog as property to be abused at will, Joe barely survived. He was rescued by a caring family and once brought back to health he brought love in abundance to his new caretakers.
Beautiful Joe's story was discovered by a relative visiting the family in Meaford and then written into book form, the story was relocated to an American location in order to compete in a Humane Society competion and thereby win publication. The book, won, was published and has sold millions and millions of copies. It is still in print over a century later.
I had never heard of the story but I immediately was moved. Eric, our little dog, was an abused dog who rescued us. I choked with emotion at Joe's rescue and foamed in anger at his past abuse. On our way back this week we went to the memorial park and found a statue there in Beautiful Joe's honour. The artist captured Joe lying down with his head raised looking into the distance. His ears, mutilated, his spirit unwounded.
I didn't expect to be so moved. But then I remembered only weeks ago doing a consultation with a woman with a disability who had lived a life of rape and violence. I remembered a young boy with intellectual disability, eyes burned out with cigarettes. I remembered measuring a bruise and documenting it onto a report.
Joe, like all these, was given to care to others.
Joe, like all these, was vulnerable to the temper of another.
Joe, like all these, felt all that was done.
We, who are in the position of care providing are given such an incredible trust. Lives are placed in our hands. Skin that can be cut. Bones that can be broken. Souls that can be destroyed. It seems sometimes that we become casual with that trust. It's all to easy to forget the strength of our grip, the tone of our voice, the harshness of our demands.
I got out of my wheelchair to make my way, with assistance, to the statue. I ran my hand gently over that dogs head. I touched at his ears. Felt the jagged remains. And was reminded, again, of my responsibility. Reminded again of the depth of human depravity. Of the creativity of cruelty.
I prayed that Joe had forgiven us, we humans, for what we had done to him.
I prayed that we humans would find in Joe a reminder of what it means to survive.
Sunday, September 16, 2007
"Thank you so much for teaching us how to better parent our children. I always thought that it was my job to protect Jeff, but now I see that it is my job to teach him how to protect himself. In that message alone, you have given me such insight. Thank you for what you do."
Reading that part of the note in the car later, I thought, "That's why I do this."
About six months later when I was doing a consultation day for the Sexuality Clinic in Barrie, I meet her again, this time with her son Jeff. He was a strapping, handsome boy with Down Syndrome. By the time he'd got to me he'd hugged the secretary, the director, the maintenance guy, the othe people in the waiting room. Mom was frustrated and as much as she tried to stop him, people would say, "Oh, it's OK" and instantly she was defeated.
We talked she, he and I. At one point I suggested that Jeff go to the kitchen and get a pop from the fridge and called in the secretary to take help him find the way. Then I gave Mom some ideas for how to deal with this situation. We practiced the strategies. She was teary-eyed when she left, "I want him to be safe but I don't want him to lose his joy, his trust."
Over the next several years, Mom would call me maybe once, maybe twice, to ask for advice. She was always full of apologies for calling, I always assured her, truthfully, that I always enjoyed her contact. Then, we met for lunch. She was making progress with Jeff, she didn't know for sure if he was developing boundaries to please her or if he was really understanding the purpose of distance and permission. Either way, progress was being made. I told her to call me when she thought that he'd got it and we'd test him out and see how he does.
She called yesterday. It was the perfect day. We had planned to go to the city, but those plans fell through. We always go to a movie on the weekend but nothing new openned of interest to us and we'd seen everything else. So we had time on our hands. We chatted for a second first and she said that she thought he'd be ready. So, I cupped the phone and asked Joe, if he felt up to playing a pedophile stalker today. "Do I have to wear a costume," was his answer. He's used to doing odd things for my job.
When she asked me when we should do this, I said, "How's about now."
We agreed to meet at one of the smaller malls here in Barrie. She and her sister would bring Jeff to the mall. Then the three of us would meet while Jeff shopped with his aunt. We found each other in the mall and then scouted the mall for the perfect spot. We found a bench in the mall that was perfect. We could view what was happening in reflection while we were out of sight.
The set up ...
Mom and Sis and Jeff take a seat on the bench. Then Mom says, "We're going off to the bathroom. We'll be back in a minute. What are the rules?" He looked exasperated, like he'd said them a thousand times, "Don't talk to anyone, don't leave this spot." She gave him a quick kiss and they were gone, he was alone.
The follow through ...
As soon as they were around the corner, Joe walked up to the bench and sat down, a little too close. Jeff, really noticed that Joe was in his space and squeezed hard up against the arm of the bench and looked away. Joe started chatting with him. At first Jeff said nothing, but then started answering basic questions. Joe learned that Jeff was in the mall shopping with his mother and his aunt. That they were coming right back. He didn't learn Jeff's name, his address or where he went to school. Jeff kept saying that the questions were private. Then came the big moment. Joe said, "Why don't we go and get a hot chocolate, it's just round the corner, your mom with find you."
The resolution ...
Jeff looked at him and said, loudly, "You are a stranger, why do you want to buy a little boy a treat!?!" At this point several people in the mall looked over at Joe and Joe went bright red. Mom came from around the corner, I stayed in place. I knew if he saw me, he'd know what was going on. It was better that he have the feeling of pride for standing up for himself.
Joe quickly retreated when mom came on the scene.
"I'm never going to do that again," Joe said, laughing in the car on the way home. We agreed that Jeff had done really well. He showed discrimination, he recognized that Joe had sat closer than he should have, he answered only questions that were impersonal and kept private all identifying information. And best of all, he asserted himself in a way that alerted others on the scene. It was perfect.
We talked later on the phone and she was over the moon with excitement. "This doesn't mean that I'm going to leave an 11 year old on his own a lot, but I know now that I can trust his skills."
"What's Jeff up to?" I asked.
"He's here telling his dad about what he did, about how a bad man wanted to buy him a hot chocolate and how he told the bad mad to leave him alone."
"For the first time I think he really gets it."
"He's proud of himself then?"
"Not as," here the phone became muffled for a second as she started to cry, "much as I am."
Saturday, September 15, 2007
The woman telling me this story could barely suppress a grin as she told me of her night out with friends. She was attending a conference I was giving in Almonte and had come up just before afternoon break had ended. Before break I was emphasizing how the subject of the workshop 'The Ethics of Touch' was even more important to me now that I was in a wheelchair. People touch me differently, talk to me differently, use different tones of voice with me. I had always known, intellectually, that people with disabilities were treated differently, but know I knew this in a different way. She approached me and said, "I can tell from your workshop that you like funny stories, let me tell you one."
As they talked about 'Fear Factor' and the things that the contestant had to do they were using sign and facial expressions to communicate how disgusting some of the things were. Signs like 'pig anus' and 'slime and muck' were used along with a grimace or a sick look. Sign language, like spoken language, communicates tones and shadings of words. I learned this when I worked with deaf kids for a few months. It's possible to sign 'stop' in a casual tone and it's possible to yell 'STOP' by deliving the sign with more speed and force along with a vein popping expression on the face. The group was laughing as they put as much meaning into 'pig anus' as it's possible to do. The woman telling me this story was obviously an accomplished signer. As she told the story she kept slipping into sign as she talked. It think I saw 'pig anus' three or four times - it's not pretty.
A woman approached them after determing that a few of the signers could hear, "I really don't want to bother you or interupt you," she began "I just want you all to know that I think your language is beautiful."
She had no idea why this statement sent the group into hysterics.
Friday, September 14, 2007
One of the ideas was to look at how to make a large agency which sprawls over a large geographic area into an agency that feels intimate and close. Where distance is reduced between staff and the level of the heirarchy between frontline staff and upper management is made less daunting. Open communication between the levels of heirarchy in an agency creates an atmosphere where people are less afraid to report concerns, talk about real issues and face up to practices that are less than perfect. We decided to start a book club within the agency wherein staff would sign on to read a book that has a disability theme and then we'd get together an talk about it. Learn from the book and learn from each other.
We started by giving a selection of books to be voted on, The Speed of Dark by Elizabeth Moon, Dissolution by C. J. Sansom and Too Big Too Miss by an author whose name escapes me. The Speed of Dark won and then 15 staff signed on to read on their time, meet on Vita's. Over the weeks that the book was being read, a buzz started about the book. People chatted about where they were in the book and all held off telling the ending. Every single person who read the book felt that they were challenged by the text to rethink disability and rethink service.
Today we held the first of two meetings. A front line residential staff, the art therapist, a director, the executive director were all part of the group. We all were equals as we discussed the book and then moved into a really passionate discussion about service and about Vita and about what kind of agency we all wanted. Two hours later we all sat back like we'd had a fine meal and said, "That was good."
What intended to happen, did happen. The agency felt a little closer - the heirarchy a little smaller, we all were a little wiser, and a growing sense of corporate community has begun.
I'm proud to be part of an organization that wants to serve well, wants to examine how we offer service, wants to try new ideas. There was a moment when I just sat back in the meeting and everyone was talking all at once excitedly about ideas, about ideals and about service.
It can't get better than this.
Thursday, September 13, 2007
When I wrote about this last time I pointed out that my wallet was 'mine'. Absolutely and completely mine. Not shared. Not part of 'us'. Completely mine. And I liked it just as it was. I wanted to make the point, then, that people have attachments - silly or not - to the oddest things. That its wrong to take away these things, to talk people into giving them up, to use disapproval as punishment for not seeing the world in the prescribed way.
I was surprised when many people posted about how I could keep my wallet and get a new one at the same time. Put your old wallet in a special place was one suggestion. It didn't make sense to me, the special place I kept my wallet was in my pocket. Cut the wallet up and make a key chain with the leather and Dave sticker ... EEEEEEEEK! Get away from my wallet you butcher. I wanted to scream at the screen: "But it's my wallet, why do you care about my wallet, why do you all want me to give up my wallet!"
Admittedly, I knew you were all right.
But your being right doesn't subsume my right to be wrong.
So it will suprise you to learn that whilst in Owen Sound we were wandering around Wallmart and I spotted a very cool black cloth wallet with an awesome monkey face embroidered on it. I pushed myself over to examine it. Perfect. I couldn't understand why it was marked as a 'girl's wallet' but who cares, I'm daring, self assured in both my manliness and maturity. I plopped it into the cart. Joe picked it up and asked, totally confused, "Who are you buying this for?""Me," says I.
"But you've got a hundred new wallets at home."
"I don't like them, I like this one."
"It has a monkey face on it."
"It's a girl's wallet."
"So you say."
His face looked stern, "Well then I'm going to take the wallet I gave you last year, I need a new wallet and I might as well use that one."
"Be my guest."
We strolled away and I smiled at the idea of my new black fabric wallet with the cool monkey face on it.
On the way out I said to Joe, "Remember that conversation we had about choices for people with disabilities in the car." (We really do have the best conversations some times about disability issues and themes.)
"Yes," he said, warily.
"You know what my new wallet is?"
"Uncoerced selection. And that is why I like it, that's why I bought it and that is why I'll use it."
I knew I had to give up my old wallet one of these days. Every time I was prompted to get a new one, nagged to replace the old one, my heels dug in a little further. I became defiant. About a silly wallet because I wanted to do it in my own time, in my own way and I wanted to pick out the next one myself. You may call this childish, I call this freedom.
Wednesday, September 12, 2007
You're wondering now how I could be friends with someone like that. Well, there are other aspects of our friendship that I enjoy. And besides, everyone I know does this about something, "Really, you like that song?" "Don't tell me that you actually watch the Young and the Restless." "Please don't call murder mysteries, literature." Everyone has an opinion on everything, and everyone seems mightily convinced of the rightness of their opinion.
Even me. Kraft Peanut Butter is the only really good peanut butter. You eat ... what?
Most of us have the ability to stand up to these little daily assaults on our self esteem, our tastes, our choices. We've learned to like what we like and be damned the rest of you. But, for me this was a lesson tough to learn and a way of living that's tough to maintain ... ergo, my capitulation on choice of movie to my friend.
I thought of all this when I was talking to a group of staff about the issue of 'choice' in the life of people with intellectual disability. It came clear to me that 'choice' could only be made where there was both self-esteem and assertiveness. I saw a definition of choice for people with disabilities that helped me think this through. Choice is uncoerced selection.
Most agencies are concerned about the opportunity for an increased number of 'selections' but have not put much emphasis on the 'uncoerced' part. There is only choice where there is no fear of punishment. Where there is safety to select. Where there the word 'REALLY' as in, "Do you REALLY want dessert?" "Do you REALLY want to buy that blouse?" does not exist.
For the last year and a bit, I've been working on discovering changes that agencies and families can make in order to increase safety from abuse - physical and sexual. But now I understand that the job is bigger than that - it's the reduction of coercion and the increase of assertion. It's working towards a service wherein we eliminate the little sins as well as the big ones. It's teaching people to stand up to us when we slip up and try to suggest that 'Sound of Music' for the 10,000th time isn't a choice that should be made.
I heard a sermon once about how many people are self satisfied and convinced of their righteousness because they don't commit the big sins, murder, adultery, worshiping golden idols, larceny, perjury and the like. But, the minister continued, what about the little sins. Stealing pens from work, undermining someone's character with snide remarks, not bothering to visit someone in the hospital because you're 'busy'. It's the little sins, he said, that clog up the soul - not getting through the day without committing murder.
This stikes me as important now as I think about this. I know, without question that I have used tone of voice and my personal status combined to get someone with a disability to agree to the 'right' choice. All without realizing that if there is a right and a wrong there is no 'choice'. I know that I have used subtle coercion - because I could, because I wanted to, because I didn't see it as important. And I'd go home feeling like a great staff because I didn't commit the big sins of abuse.
I have decided to tell my friend the next time he says that it's my turn to choose the movie ... that choice means uncoerced selection and that means that whatever I choose, he's gotta just say, 'Great let's go.'
And the next time I eat Kraft peanut butter I hope my tongue sticks to the roof of my mouth - keeping me silent when you tell me you like Jiff.
Tuesday, September 11, 2007
When we got to the car, Joe asked what she was telling me. I told him that she was a bus driver, driving kids with disabilities to school and back. She told me of a story about a little boy who got on her bus who would upset the other kids because he would scream long and loud. She tried several solutions to get him to sit quietly. None worked.
One day she brought a large picture book on the bus an sat with him. Getting him to turn pages and she'd read the words to him. She did this for several days and then noticed that he would now quietly turn the pages of the book. It was something that worked.
Several weeks later she decided to tell the teacher at the school about the solution to the problem of screaming on the bus. "He likes," she said, "looking at books on the ride to and from school." The teacher, not always a receptive lot, rolled eyes and said, "He's blind, he can't like picture books."
The driver was embarassed and wished she'd said nothing.
The woman told me this story to illustrate the point of 'poor communication' as the subject of my lecture today was communication.
I nodded and agreed that we do communicate poorly, I didn't add but should have - that if you are a bus driver or a janitor or a playground monitor - you're so far down on the respect-o-meter that you might as well be a parent.
So, driving back to the hotel, telling Joe her story something clicked.
He stopped screaming.
He looked at the book, quietly.
All this mushed around in my head. I wonder if he really liked having her sit with him, give him a gift of a book, read it to him, describe the pictures. Maybe as he flipped the pages her words stayed with him, maybe he saw the pages in his mind, maybe he liked being talked to and included. Maybe it wasn't about the book, maybe it was about the caring, the times spent together, the contact she'd made.
Maybe everyone missed the point.
Maybe the screaming meant, "I'm lonely in here."
Maybe the bus driver caring was all he needed.
Maybe the book was more than a book.
He stopped screaming.
He looked at a book.
He's not the one who is blind here.
Monday, September 10, 2007
But last night we arrived at a small hotel and Joe went in to check in. I could tell by the look on his face that it didn't look good. He got in the car and said, "Well, lets take a look." He had the key for Room 19 in his hand. He started the car and we drove round the side of the hotel and then down a steep driveway with a little roundabout at the end. There was no where to really park. Pulling over to the side and ensureing the emergency brake was well on, Joe got out to check the room.
He stepped down the steps to the walkway and then at the room, unlocked it and stepped up into it. He came back and said, "Besides not being able to get to it, you won't be able to poo in it either." Apparently they had a very low toilet that was made accessible by putting a bar somewhere near it.
We drove back up to the office and went in. The woman seemed a little offended that we didn't like the room. It wasn't a case of not liking, it was a case of not being able to get to it, get into it, use it when we were in it. So she took Joe off to see another room. This one was worse still, but she stood and explained how Joe could wheel me over the lawn, which was so damp that his foot sank into the earth, then he could heave the chair up inot the room. It was on the topic of the bathroom that she finally gave and admitted that "We really don't have those kind of rooms."
Now we are stuck in a small town, with no where to stay, it's Sunday so we can't call the agency who booked me to speak for advice. So we drove a long way back to a town where there was a chain hotel who luckily had one accessible room left. But that means we've got to drive a long distance to do the training each day but, of course, we're willing.
Besides being lied to about their rooms, what was disturbing was that we were being treated as a 'problem' and a 'bother' when they booked the room to a wheelchair user. It was like they 'wink wink' knew that wheelers could really walk and climb stairs if they just wanted to. "Come on, we won't tell.'
It is these times that I find my disability disabling. Times when we have to drive miles away to get a place where I can get around. But, I keep having to remind myself. It's about Room 19. It's about being disabled by the environment, not the chair. If Room 19 had been what was promised, I'd not be feeling even the slightest bit disabled.
Damn Room 19.
And damn those who lied about Room 19.
Because, here I am, in room 251 and suddenly my disability doesn't matter any more.
Sunday, September 09, 2007
Normally, I don't even notice.
Today, I noticed.
Today, I got angry.
It's a common enough sight when grocery shopping, people pick over the fruits and vegetables looking for just the right tomato, just the right peach. We were going to try a new recipe for Fresh Tomato Pie and I was sitting with the flimsy store bag in my hand waiting for a woman to go through each and every tomato on the stand. She'd pick one up, examine it for even the slightest imperfection and, when found, her face would screw up like she'd stepped in poo and she'd toss it aside and then look for another. We waited a few minutes and then I told Joe to pick up the other items and I'd wait my turn.
And I did.
But I hated what I saw. The search for perfection. The tossing aside of a perfectly good tomato because of the slightest flaw. "This," I thought, "is the problem."
You see this morning I was reading the paper, it was a beautiful sunny day - perfect for lounging about and catching up on the news. Then I read an article about an Italian mother who, carrying twins, was informed that one of the twins had Down Syndrome. She asked for the one with the extra gene to be aborted and the other, the normal perfect one, to be kept safe. During that abortion the wrong baby was left behind. The typical kid was aborted and the wrong baby, the baby with Down Syndrome grew on. Devastated at the tragic loss of the 'right' baby it was decided that the 'wrong' baby would now be terminated.
In all the discussion of this, the tragedy of the loss of the normal child is emphasized. The kid with Down Syndrome, the disposable, flushable, abortable baby - well, it's survival of the first attempt on it's life, that was a tragedy. Now the family is looking at all sorts of law suits because of their pain and suffering. They mourn the loss of the baby they wanted. The right and good heir.
Well as far as I'm concerned, that kid with Down Sydrome, was the 'right' baby.
Unfortunate to be given the wrong family.
Saturday, September 08, 2007
We were parked at the station and Joe was in paying. I was looking at posters stuck up in the window of the gas station and noticed one that announced that Anarchy in Angus 2 was finally here. On the poster were four guys making 'angry he-man' faces, fists up. When Joe got in the car I pointed the picture out to him and said, "Let's go!" He looked at me and said, "You are kidding, right?" I told him that we were in a rut, we should do something different than we'd ever done before and that wrestling fit that description. In a second, Joe as into the spirit of the thing and we bought tickets right then.
The doors opened at 6 and we were there shortly after. I wasn't sure what they'd do for wheelchair seating and I wanted to be able to be up close. This, I was absolutely certain, would be the only time I would ever go to wrestling so I wanted to actually experience it close up. Wheeling in, I noticed something odd, people quietly and without fuss made room for the chair and absolutely no fuss was made about getting seats. The ring was in the center of the gym and movable chairs were set up on it's four sides. "Push aside any seat you want," was the instruction given.
As the crowd arrived they were clearly in the mood for a good time and people were grabbing places to sit and, true to advertising, there was a fair degree of orderly anarchy in Angus. Rows grew and shrunk as chairs were grabbed and moved. For a while I had two people in front of me, then four, then one as people got settled in.
When the wrestling started, I was impressed with the showmanship and with how hard the guys and gals worked to give the crowd a fun time. The kids were in heaven. One boy in front of me said to his friend after a spectacular lift and drop (do not expect me to know wrestling terms) "It just doesn't get better than this."
And for awhile for me, it didn't, as far as anyone was concerned I could have been sitting in a regular chair. No stares, no pointing, no notice, nothing. Everyone was fixed on having a good time and it was an egalitarian evening.
Last week we went to a play, we saw, Pump Boys and Dinettes, and though the staff at the theatre were nice, several people made a big deal about stepping around the chair, about the fact that I sit tall in my chair, about having to wait for me to push into the theatre. People who would sneer down their noses at a wrestling crowd did the same to me.
But not here.
As costumed men and wild women slammed each other down on the mat I was just part of the crowd.
Before going that evening I had made a joke, a few times, about what I expected. "I'm more afraid," I said, "about the people attending than I am of the guys wrestling."
That was a snobbish thing to say.
I was wrong.
Friday, September 07, 2007
Joe and I had stopped to get a falafel pita on the way home from work. It was blistering hot out and the mall welcomed us to a cool oasis. We'd finished eating and Joe said he wanted to run down to check out to see if the mall had a Roots clothing store because he wanted to replace a pair of walking shorts.
I told him that I'd just wander about a bit by myself and to just check the stores in that vicinity when he came back. I had pushed myself only a short distance and was enjoying being alone and being cool when I saw her. She was in an odd position and she seemed to be staring at the store directly opposite her. I pushed myself into her view and noticed that she squirmed a bit as if she was trying to see around me and into the store.
I pushed away to see what it was she was looking at and realized that the store was actually a bit difficult to see into at wheelchair / banana cart level as it was mostly mirrored along the bottom. She was looking directly at herself. Appraising herself. Immediately all sorts of thoughts went through my head. I thought that she was seeing herself as a small frail being on a banana cart. I thought she'd be seeing the way her body lay, a little twisted, a little turned. I thought that she was seeing what I was seeing, in other words.
Suddenly a hand slowly came out from where it had been tucked away behind her. It moved like I imagine the Canadarm on the space shuttle moves, carefully, slowly and with a tendency to jerk. She didn't notice me watch her. She concentrated on her image in the mirror. Her hand formed into a fist with only one finger extending. Then, carefully, that finger lifted a curl of dark hair that had fallen onto her brow and pulled it slowly back into place. The effort the movement took showed on her face.
Then her hand retracted and folded back in place behind her. She burst into a smile at herself, pleased with how she now looked. She wasn't a woman on a banana cart. She was a woman fixing herself in a mirror. I had seen what others had seen, she had seen herself.
A stout woman came out of the store and said, "Sorry for leaving you so long love, you must have been bored silly."
She hadn't been.
As she was pushed by me she saw me, looked straight at me. I knew there was an intellegence in there. A woman. I said, "Your hair looks great!"
She winked, smiling because her little act of vanity had been caught.
"What on earth did you get up to?" Said the stout woman pushing her along the walkway in the mall, "Can't leave you alone for a minute.
I heard them both giggling as they walked away.
Joe came back and said, "Did you see the woman ..."
"Yes," I said, "and I know why they are laughing."
"Can't leave you alone for a minute ..."
Thursday, September 06, 2007
And I remembered.
Years ago, I came to work, on a day very much like this one. Lincoln Alexander had just been appointed to the position of Lieutenant Governor of Ontario. It was, I knew a big deal. He was the first black person to hold that position and we all knew that a significant line had been crossed in the life of our province. I arrived early, made coffee for the others, then went to retrieve messages and generally get ready for the day.
Ten or fifteen minutes later, I went into the coffee room and found the temp secretary, a lovely woman, crying softly at the coffee table with the newpaper resting on her lap. I came to her quickly and asked if she was OK. I didn't know her well, she'd only been there a week or so, but it didn't matter, she seemed so distressed. She shook her head when I asked her if anything was wrong, if I could do anything. Then she picked up the paper and showed me the reason for her tears. There on the front page was a huge photograph of Lincoln Alexander.
"I never thought, growing up I mean, I never thought I'd see this day."
Tears sprang to my eyes. I understood, almost instinctively, what she meant. Yes, it was a big day for Canada and for Ontario. But it was a huge day for her, a black woman. That face in the newpaper that day signalled to every racist son-of-a-bitch to step back, but it also signalled to every black kid to step forward. It was a big day for a community. A community that wasn't mine. But a community that had it's own reason's for celebration.
And now today.
David Onley became the Lieutenant Governor of Ontario. A man who gets around on a scooter. A disabled man who has the courage to identify with the disability community. A man who has spoken before and will speak again about disability rights. The broadcast this morning mentioned Onley's disability but seemed to have no understanding of his community, of the 'bigness' of the day for a whole wack of people with disabilities. For me.
"Are you OK?" Joe asked as he'd noticed that I'd fallen silent and was looking away from the road and off into the distance beside me.
"Very," I said.
Wednesday, September 05, 2007
It was like when I first started getting recognized publicly. I had been lecturing for a few years and been the subject of a one hour television documentary and a 'talking head' on two or three other television programmes. I was in an airport and someone approached me and said, "Are you Dave Hingsburger?" I was shocked and, truthfully, a little pleased. It was a nice feeling. I came home and told Joe who had a 'Yeah, sure,' look on his face.
Over the next several months it happened more and more often. Joe was never with me when it happened and I was always frustrated because I really wanted him to see what was going on. Then we were in the food court in the airport in Minneapolis. On cue Joe had left to get some thing at the Chinese food place and I had picked up a pizza slice and was sitting at a table. A woman approached and said, "Are you ..." and I groaned. She immediately apologized for bothering me and I said, "No, no, it's OK, except this happens all the time when Joe is away. Could you stay a second so Joe can see that you aren't a figment of my imagination?" She laughed and said, "Sure."
"See!" I said to Joe after she left. Since then it's happened several times when we are together and Joe no longer questions my stories about recognition.
Well, on Labour Day we were out with friends for tea. We were all chatting and the woman sitting at the table next joined into the conversation for a wee bit. It was all very friendly until. Out of the blue she leans over to me and says, "I'm a nurse and I'd like to know what caused your disability? What's your diagnosis?"
I don't know what being a nurse has to be with being rude, having no boundaries, and asking someone a personal question, in public, in front of friends, in Starbucks, on a holiday Monday. But oddly, I was really flustered. If I'd been alone, I'd have confronted her for what I considered to be a intrusive question. But I wanted my friends to see me as being more socially graceful. So, all I said was, "I'd rather not say." She looked at me, glared for a second, and then smiled and said, "But I'm a registered nurse," and waited for a response.
Again, I'm not sure what being registered had to to with not having boundaries, not respecting my privacy, not gauging the seriousness of my previous response.
Quietly, but firmly, I said, "I'd rather not say." She was really offended but that stopped the questioning.
It festered in me and I wondered what my friends all thought. Firstly, this kind of thing happens to me all the time. Most of the people aren't nurses, registered or otherwise, most people - even if they are a trucker - feel they have a right to personal information about my disability. But this had happened in front of others. So I asked, "What did you think about how I handled the question about my disability?" Something odd happened, my friends immediately responded about how they were glad I didn't give out the information, about how that woman had no boundaries, about how they were shocked at the intrusive nature of the question. All things I needed to hear. I had begun to wonder if it was just me, if I was being offended needlessly, but here they were giving me support for living a life with dignity and privacy. It felt really good.
On the way home, I thought about that post written by another person with a disability about people spontaneously becoming socially inadept when someone in a wheelchair enters the room. It sure is my experience. But I said to Joe, "At least I have witnesses this time!"
Tuesday, September 04, 2007
He was fairly skilled and as such he lived in a Semi Independant Living kind of situation and he loved having his own place and making his own rules. Sometimes when he woke up early, 3 or 4 in the morning he would get up, get dressed and cleaned up, and head out on his bike for a coffee at one of the 24/7 kind of coffee places that he frequented. It was on one of these excursions that he was hit by a driver and accidentally killed.
His death is surely tragic.
I understand that.
Any life cut short, lost, is tragic.
Many years ago I worked in an institution and remember the death of a man there of similar age. He died in a room with many others, no space really his own. He died kept away from the community - for his own safety. He died with little of his own - including his will. He died early. Too young. But still he died.
Later, working in Toronto as a Instructor at a "PreVocational Center" the press was alive with the story of a woman with Down Syndrome being struck by a bus and being killed. The stories were about 'letting people like that out unattended,' the 'failure of the service system,' the 'dangerousness and foolishness of the philosophy of integration and inclusion'. There was the assumption that her accident was due to her disability. There was the immediate call for a review of service - how could we have let her out on the streets alone.
Pray God we are past that kind of nonsense.
But pray also that we have come to see joy, even amidst tragedy.
This young man died living HIS life.
This young man died making HIS decisions.
This young man died doing what HE loved.
This young man died feeling HIS freedom.
This young man died while living.
In contrast to the thousands buried in institution graveyards who died long before death. Who died in captivity, longing to be free.
I see the tragedy of his death.
But I feel the extraordinariness of his life.
So I am conflicted. I bow my head in prayer at the loss of his life. I bow my head in a prayer of thankfulness that he had an actual life to lose.
Godspeed to the victorious.
Monday, September 03, 2007
I was a sensitive kid, which was a handicap (word chose carefully) itself growing up male in Salmo and led it various other traumas, but I remember going to the Calgary Stampede and paying 25 cents to go into the 'Freak Show' and getting only part way through before having to leave. I threw up behind the tent and hid myself away for hours trying to rid myself of what I'd seen. The 'Freaks' didn't bother me, but sitting there being on display for money seemed to be to be horrific. I hated being part of the crowd, wanted to apologize for having looked, wanted to crawl under the earth for even having thought about going into the tent in the first place. I got this sense from watching the telethon. Having Tammy or Timmy - poster children didn't even have their own names, they were given names that were marketing friendly I guess, anyways having them come out for public view, for public sympathy caused me to feel actual nausia. Again, to be clear, not at the fact of their disabily - but because of the public display, for money. Then on, I never thought about the telethon. Didn't watch, joined in when others complained, but didn't watch.
Never thought much about it again until I was working for West Toronto High school as a classroom aide with students with physical disabilities. Three boys in the classroom had Muscular Dystrophy. I had started mid-year and after the summer break came back a few days early to help get the classroom set up. I thought for the first time in a long time about the telethon, there were three kids with MD in the class. What were they feeling as their disability was being broadcast over the airwaves that final weekend before school? Two of the boys, brothers, were very shy and always seemed fragile. I knew I couldn't ask them. But the other boy, Tom, was quite a wit. I figured he'd be up to it.
When he came to school there was much activity. A couple days later we had some time alone together and I worked up the courage to ask. So, I did, "So, Tom, I'm curious, what do you think of the Jerry Lewis telethon?" He looked at me like I'd kind of offended him and I immediately began to apologize. "No," he said, "I've been waiting for someone to ask me. No one ever has."
"I hate that damn telethon," he said, "first God gives me Muscular Dystrophy and then Jerry Lewis claims to have boffed my mom - talk about adding insult to injury." We both laughed. He went on to explain that he had no difficulty with raising money for research, was even grateful that they did it, but did they have to present his life like it was over before it started? Did they have to evoke real pity? Did they have lie about what it was to have a disability and be in a wheelchair? Once he got going it was hard for him to stop. When he was done he said, "That felt good, thanks."
We never talked about it again. And again, the telethon left my head.
My Mother-In-Law, Ellen Jobes, was a telethon addict. She got herself set up with a big mug of beer and clamato juice (I kid you not) and she'd sip at it while watching the 'thon'. She stayed with us over the Labour Day weekend one year and I expected her to be plopped in the chair with a bit of foamy red over her upper lip watching Jerry. I had resolved to say nothing about it. She didn't, at this stage of her life (really, really old) need me yapping at her. But I was surprised when I came upstairs to find her not watching telly at all.
I asked her why she wasn't watching the telethon, she said, "I got annoyed last year watching it and I don't want to watch this year." I was curious so I asked, "What annoyed you?" She explained that she needed her cane full time now and sometimes she needed a wheelchair to help her get around airports and was working up to needing a walker. "When Jerry started to go on and on about kids being in a wheelchair prison, I knew it wasn't true. The wheelchair isn't what I'd thought it would be. It wasn't what I feared. It was just something that helped me get around. Jerry shouldn't lie about that." That was it for her, at least for then, she went back to watching the telethon but for 'entertainment'. However, one year, Jerry lost a viewer.
Then I forgot about it again. I don't watch it, no one I know does, and I was surprised to get a request to protest it this year. Do they still air that damn thing? was my first thought. Then I thought of Tom and of Ellen and of those people in the tent in Calgary. And it all came back. Differently this time because I'm in a wheelchair. So ...
This blog joins in the protest about any use of disability to engender pity, reinforce prejudice, cause ridicule or create barriers to understanding - this would include, of course, the MDA telethon.
For more information on today's protest ... or to find other blogs participating, please visit http://www.karasheridan.com/ and you'll be guided through the protest day.
Sunday, September 02, 2007
Where was Joe? Where was Joe? Where was Joe?
I couldn't take my eyes way from the bank of televisions. I heard Joe call me from the next store down in the mall. I waved frantically for him to come. I didn't look away. They were still panning over the camp. Every television was playing the same channel. There must have been twenty or thirty broadcasting. Joe rushed over, "What's wrong?"
"Watch!" I commanded trying to slow my breathing, "I saw something incredible. It may happen again, they are still panning the same area of the camp."
"You saw something incredible on the History Channel?"
"Oh my God," Joe said as the historical footage taken at the liberation of one of the Nazi Concentration Camps hit his eyes. No matter how often you see these kind of ...
"There!" I almost jumped out of my chair. "Look! LOOK!"
"Holy Shit," Joe saw her and, like me, had a visceral reaction.
Sitting atop a barrel looking back at the camera with eyes that didn't belong to her anymore was a little girl with Down Syndrome. Devastation had been wrought around her and she sits peaceably on a barrel looking directy at the camera!
Then, she was gone the programme had cut back to the talking head.
Joe is a WWII buff and we've seen practically every documentary, every movie, that had anything to do with the period. We've even read Berlin Noir - the triology of murder mysteries set in Nazi Berlin. My interest has always been more regarding the extermination of people with disabilities. What happened at Hadamar in particular and I want to one day visit the memorial there. It has always frustrated me that there is little emphasis put on the Nazi experimentation with means of mass destruction on the institutionalized disabled. The book, "By Trust Betrayed" by Hugh Gallager, stunned me with his ability to document the horrors of what happend to people with disabilities in Germany, with his ability to tell a story, and passion to get it right - this was the first book that made that history really real to me. Yet in all my readings I could not imagine a person with a disability making it to a death camp. And once there surviving it.
Who was this little girl?
Joe went into the store. They had so much merchandise that I couldn't get in. He asked if they could check to see what channel was showing the documentary, and if possible, what the name of the documentary was. They looked at him as if he had asked them to actually provide customer care, told him they didn't have time for that 'kind of nonsense' and he came out and said, "I wished it was you who'd gone in." (At times my ... umm ... personality ... really annoys Joe and at other times he likes to send me in like his own personal 'hell on wheels' to deal with snotty clerks and the like.)
"Forget the store, I'm not in a mood for a fight."
"She survived. If there is a Top Ten list for miracles, this would be near the top. I've got a glow on."
But now we're home and now it the next morning, I feeling refreshed because I went to bed early. Joe, though, stayed up and watched Hitler's SS: Portrait in Evil which started at 8 and went on to 10:30. I didn't think the television broadcasted that late!
This all leads up to ... DOES ANYONE KNOW THE NAME OF THAT DOCUMENTARY!?! I'd really like to track it down.
She made it.
But, what happened next?
Saturday, September 01, 2007
Given that I mostly work with other adults, I forget how small seven years old is. He sat in a large chair and when I introduced myself to him, he pulled his legs up and curled into the corner of the chair. Then he looked up at me and I saw those eyes.
Of course I never meet people who come for consultations without already having a picture of them in my head. I've read reports, talked to people who know them - love them - worry about them and of course this information effects me. I had been told that he was an angry little boy. He had been in foster homes for several years, bouncing from one to another, and had been recently adopted by a mom and dad who specifically wanted to adopt a child with Down Syndrome. They'd expected, they'd said frankly, "a happy Down Syndrome boy who loved everyone." But they'd gotten a different package. A kid who resisted hugs, who gave little and wanted less. A kid who's anger took hold of him in ways that were frightening. They had several consultations, evaluations, and had requested another. They were getting, they felt, no where.
I pictured an angry pair of eyes.
But they were so sad.
I started with him the way I always do. "Do you know why you are here today?" He seemed surprised by the question and he answered, "Because I have Down Syndrome."
He was so far from the mark that I couldn't keep astonishment from my voice, "Really?" I asked. Surely he'd know that he was here because he destroyed rooms with his anger.
"Yep." He had glanced at me and now he was looking down.
I fell silent. This was not a therapeutic trick. He'd thrown me and now I was trying to reset my own agenda. Figure out what question to ask next. The silence though seemed to interest him. He looked up at me and asked, "What's wrong? Why aren't you talking?"
I said, "You know, sometimes I get in trouble here at work."
"Because I don't want to do what they tell me to do."
This interested him, "Like what?"
"Like I'm supposed to talk with you about your temper and try to get inside your head." Might as well be honest, he was.
"You don't want to do that?" He smiled. The smile didn't reach his eyes, but he smiled.
"Because I feel like playing X's and O's. You want a game?"
He grinned, "But won't you get in trouble?"
"Are you going to tell?"
"Then who'll know?"
He giggled. I moved my chair around, pulled out a piece of paper and drew the game board. Then I pulled a tooney out of my pocket and he called heads, I won. I always play X so I placed an X in the center of the grid. We didn't talk. We just played 4 or 5 games. He's a kid so he doesn't realize that once you know the game, the best you can get is a draw. So I let him win a couple of times. Sue me.
"Did you talk to them?" He asked while pondering the board.
"The one's who brought me." Note to self. Didn't call them parents. Didn't call them Mom and Dad.
"They done yet?"
"With me. They done?"
This was too big and I put the pen down and looked hard at him. "What are you talking about?"
"No one keeps me. Once they find out I have Down Sydrome, they don't keep me."
He's out of radar range. His Down Syndrome has nothing to do with the consultation. "What does Down Syndrome have to do with any of this?"
He started to cry. I don't like seeing kids cry. It makes me automatically want to cry too, to swoop them up and tell them it'll all be ok. I never do this. But it's an automatic response.
"My mom didn't want me because I had Down Syndrome, and all the people I lived with always talked about me having Down Syndrome. Then, they gave me back. These people, when are they going to give me back?"
"But they aren't going to give you back. They're here with you trying to figure out what will make you happy. They want you to stay. They never, ever, once said anything about giving you back."
"They always give me back." He said this more to himself than to me.
"Well, I figure you should just ask them. Instead of ripping their house apart trying to make them give you up, why don't you just ask them."
I didn't want to get in the way of a natural interaction by giving the parents a heads up, instead I just called the secretary and asked her to bring the parents back into the room.
The settled, looking tired and anxious. I said to him, "Go ahead."
He didn't look up and in a quiet voice said, "Are you going to give me back?"
Mom started crying and asked, "Is that what this is all about?"
He nodded his head.
"Why, never." His Dad answered, "You're stuck with us."
Mom noticed a pad of yellow stickies beside my note pad and grabbed it, wrote something on it, then came around and stuck it on the shoulder of his hoodie. He took it off and looked at it. Not being able to read yet he handed it to me.
It read, "Property of Mom and Dad."