Wednesday, November 29, 2006
These were people who had walked such a different path than I had. They came, some on their own, some in the company of care providers, they came. But they came from a different land. A different world. They sat alone and in groups. Some chatted but most sat quiet, waiting, as they have waited all their lives for justice to arrive. What did I have to say to these people? Why should they listen to me? My heart began to race and, panic rising, I located all the exits.
Finally the room was full. I announced that we would start in a couple of minutes. Some looked at me expectantly. Some didn't look up. Some rocked. Some paced. Some quitely muttered. There was nothing to do but start.
We began, like I always do, with the 'NO rap' where people shout out 'yes' or 'no' to various statements. The very first 'no' shook the rafters. They were here to learn, to participate and by the heavens, they did. We sailed together, they and I, through the day.
At one point, in my favourite role play, a single woman gets up and shouts 'no' to Joe who stands at the back of the room when he says 'hey, babe, you want a ride'. Slowly, more and more women get up, finally women, men, staff, self advocates, are up and shouting 'no' 'no' 'NO' 'NO!!!'. I had turned on the tap. They didn't stop they shouted 'no' as if they were shouting through their own histories at everyone who had ever treated them with disrespect. My heart thundered in my chest as I imagined disphobic bigots everywhere shivering as if someone walked over their prejudice.
By the end of the day, I had a glimpse of the strength of the PEOPLE who have disabilities. This was not a gathering, this was a community, a people. What untapped potential we have for revolution. What incredible resource for change. I know this because they reached inside of me and erased, for a few hours, the boundaries of my expectations of just what and just who disabled people are and just what and just who people with disabilities could become.
Tuesday, November 28, 2006
When the day was over he came along and shook my hand. He said something to me that I will always remember as he described his present job of being a teacher to kids with severe learning disabilities ... this is what he said to me.
I have been given the power to suppress or the power to let grow ... it is my constant prayer that I always make the right choice.
Wednesday, November 22, 2006
Mom and Dad kept directing questions to their son, ignoring the constant chatter from the other boy. But at each question the chattering child leapt in to provide the answer - along with colour commentary. He reminded me so much of my dog Eric as a puppy. Eric couldn't stand Fred, the older dog, getting attention so if you tried to pet Freddie, Eric would fit himself in between and use his muzzle to push your hand away from Fred and toward himself. There was a desperation to the behaviour that was both cute and pathetic at the same time. This kid was like that, 'pay attention to me me me me' seemed to be the message in every word he spoke.
Then it came out, the kid was cool about his disabilities. He said that he was diagnosed as dyslexic with 'a touch of autism' he said. A joke needed to be made and he made it, 'As an autistic I want the world to be a particular way, as a dyslexic it never can be ... so in the confusion I'm kind of normal.' I almost spit out my veggie burger and started to laugh. They all looked at the table and then decided that I was laughing at something Joe had said and they returned attention to their own table.
What a cool kid, I thought. But his parents didn't, he was visiting his friend for the weekend because he didn't go home much. They must have been clear about their disappointment in him because he said, straight up with no hint of emotion, 'My parents don't bring me home much because my disabilities bother them.' His friends parent exchanged glances that said, 'Boy do we get that.'
Whoa, I don't get it at all. He was cute, bright, articulate, what's to be ashamed of. Hell, if he was hairy faced and six legged, if he's your kid, you love him - that's the deal. It's in the contract. Loving a kid with a disability doesn't make you special, it makes you a parent.
His parents are sailing to India for the holidays, he's not welcome on the voyage. Like the unicorn, left behind by the Noah and clan, the trip will be less beautiful because he's not there. Today, as we drove through London looking for our hotel, we saw an elderly mom with a 30ish man with Down Syndrome, they were laughing as they walked together. I'm betting that she didn't expect to have him along on the trip and I'll bet his company makes the world brighter for her.
The chatter went on, non-stop, until the food arrived. He slathered catsup onto his steak and silenced as he ate. The silence was deafening. His presence was dimmed for a moment. 'What a light' he casts, I thought.
Well here's to the dyslexic autistic in all of us. I want the world to be a particular way, and I can't make it so. Though it makes me normal, it also - sometimes - makes me wish for an extra unicorn or two in the crowd.
Monday, November 20, 2006
I came to the computer room to check emails and double check the blog, I had to write an email that I didn't want to write but had to get done. While I was doing that Joe was getting the luggage up to the room. He came and got me from the computer and we went to the bar. We have an English cell phone to use over here and we turned it on to reprogramme the time and date.
To our surprise the phone bleeped that there were messages. Four of them in fact. I called and found that there were no voice messages, then checked to find that the messages were all text. It took a while because I hadn't used the phone in a long time and couldn't figure out how to get messages off the phone. Finally I found the right button and retreived them.
Three were, 'Hi, Dave' and the fourth was a much longer message. Clearly Neil had tried four different times to text me. His message was a simple message of welcome and friendship. Neil and I met, the first time I think, at the Paradigm conference and then again in his home town as I did a conference for self advocates and a separate one for staff. He is a self advocate speaker himself and is rightly proud of what he had done and acheived.
But one of the things that Niel had acheived is the ability to think of others - to put himself out for someone else - he has the gift of welcome. While I work for Paradigm when I come to England, my purpose is Neil. It was nice to have my voice and my work acknowledged by a simple, 'welcome back'.
After a long day, I finally, smiled.
Sunday, November 19, 2006
So, I went to see Shut Up and Sing partly because I really enjoy the debate over free speech. Partly because I knew that the movie would be preaching to my prejudices and who doesn't like that? But as I began to think more deeply about it all, I realized that I work in a system that really doesn't encourage people to speak freely and openly dissent.
Good heaven's today at work something weird happened. I went into the kitchen with my frozen lunch and pulled several frozen bean burrittos out and put them on a plate. All the while I was talking with a woman with a disability who was sitting having her lunch. I then turned to see that the microwave was gone. Yep, gone. I looked at her and she said, "It's broken and is being repaired." I was annoyed, "Why didn't you tell me when you saw me opening these," I said pointing to the burrittos. She was flustered and started stammering. She was AFRAID!!!!! Afraid of speaking up and telling me that I was off track. She'd learned her place and was shocked that I had expected her to address me as an equal. That ~I expected her to tell me that I was making a mistake.
Ask almost any direct care staff about working with people with intellectual disabilities and what you'll hear is, "It so hard to get a straight answer out of Jason because he just looks at you and tries to figure out what you want to hear." People with disabilities have been conditioned through a lifetime of being 'wrong' that there is always a 'right' answer to every question and that staff, or parent, or teacher know what that answer is.
I remember asking a guy named Wayne what he really wanted. I was frustrated and I know that was in my tone. Well, Wayne had had enough. He turned to me and said, "You want to know what I want ...." and then he told me. He told me about his life in the institution, he told me about his life in the community, he talked about a lifetime of being disrespected. He was angry and the words poured out of him.
This wasn't Wayne. Wayne smiled all the time. That's all the time. He looked like a skinny, white, smiling Buddah. He nodded when you spoke to him. He agreed with everything. He was happy. All the time happy.
And by all that is holy, I bought it. I enjoyed being with Wayne and knew, proof positive, that he enjoyed being with me. But Wayne had learned to Shut Up and Smile. He engaged in "Yes, Master" behaviour. He knew who had power and he knew how to bend to the will of the other.
This is what we've done. What we've created. It's time for some freedom of speech, some freedom of thought and time for wholesale dissent. I don't want to work for people who are the pale imitation of what they think I want. I want people in vibrant colours and bold stripes.
I had known Wayne as an outline. That day I knew him differently. That day I met him. That day he became a self advocate.
Saturday, November 18, 2006
Then I thought.
I'm never, ever, ever, ever again going to explain to anyone that people with disabilities deserve to live at home in the community. Some truths are self evident, that's one of them.
Then I realized.
I'm angry. I'm really, really, really angry. It's not OK that journalists write stories about people with disabilities without talking to them. The reporter never talked to one person, not one person, with a disability. She talked to parents and to 'friends' and to non-disabled talking heads from the community living movement, and I'm sure they thought it was balanced.
Then I fumed.
To hell with it. I'm not going to write a polite letter. I'm upset. They are talking about peoples lives. They are talking to future neighbours who will be upset that these deviant others are in their back yard. They are talking to people who've never smelled an institution. I sat down and banged on the keyboard. I called the reporter a bigot and chastized the paper for printing propoganda.
Then I remembered.
After I hit the send button, I remembered Thursday ... visiting a woman with a disability scheduled to leave the land of the long corridor and come home. We showed her a video of her new home. I watched her cry. Break down and cry. When she saw her new home. It was like she finally won at the game show 'life' and was 'getting out of jail free'. She trembled with excitement as she pointed at a room and said, "I want that one.' But no reporter is going to talk to her ... what does she know, she only lives the life that others talk about.
And I got angry again.
Enough. Enough, enough, enough. Disphobic attitudes and disphobic people need to be confronted. I know there is little likelihood that my letter will get printed. I didn't write it to get published. I wrote it so that some damn letter opener, letter reader at the paper will go ... "Wow, I didn't know that people would get ANGRY at the idea of continued institutionalization." Can we stop EXPLAINING and start YELLING being UNREASONABLE being RUDE being UNCOMPROMISING being RIGHTEOUS being INDIGNENT being CONFIDENT THAT WE ARE RIGHT. Can we start calling a bigot a bigot and throw and spitting clawing temper tantrum - even if it's on paper.
Please, anyone who read that article here in the Toronto area. Grab a few mintutes and yell at them. Forget being polite - get mad and let them know it. Call the paper, deluge the reporter with emails, DO SOMETHING.
My first post on this blog was called ... there is a line I will not cross ... how about we all agree that we're going to get angry a little more, be 'understanding' of bigotry a little less, and speak up a lot more.
A LOT MORE.
Friday, November 17, 2006
A couple days ago I was working in Boston. I had arrived at the office early and chatted with people who were slowly dribbling in for the day of consultations. One of the women there was a high up government official type and I listened in to a converstation she was having about a woman with a disability. She was excitedly talking to another mucky muck and explaining how well this woman was doing. She bragged on and on about the new skills the woman had learned, how she was coping so much better, how she had grown and matured. So full of pride that some of it slushed out of her eyes that she had to gently dab the excitement away with a kleenex. She admited that her mind had been forced to expand to include the possiblity that it was possible for the miracle of maturity to touch even those that seemed completely lost.
Yesterday I was meeting with some folks at my home agency and one of the staff was talking to me about a guy that she was supporting who was making a really big, and really permanent decision. She wanted, desperately, to counsel him against it. She didn't think it was a good idea. All she wanted me to say was, "Let him make up his own mind. He knows what he wants. We don't always know better." But I didn't say any of those things, she didn't really need me to. Right in front of my eyes I saw her grow. Mature as a care provider.
The other day I met with a young man with a disability, downcast eyes, broken spirit. Oh, I knew he could be a hellion, a manipulator, a generally difficult guy. But right then, in the interview we were talking about his past. The rapes he'd suffered. The abuse that he'd dealt with. The path that was chosen for him ... the one that he couldn't seem to find an exit ramp from. In those moments that we talked we were both entirely present and both entirely real. His hurt radiated out of him and enveloped me. I fought my own pain back so that I could experience only him - without contaminating the experience with me and mine. For the first time he understood that he was a victim. That what had happened wasn't his fault. The words, gently spoken into the air, grabbed his heart and shook it hard. He looked at me and I saw the boy he once was - and for a second saw the man that he could be. As we drove away from work that day I was quiet. Joe asked what was wrong. All I could say was ...
Today changed me, I don't know how, but I know I've been changed.
We who work with, or parent, people with disabilities have opportuntities to grow. With eyes open and heart in motion we can always be in the process of becoming.
I don't think character is taught.
I think we practice it until we get it right.
Thursday, November 16, 2006
The boy in the picture is probably about 4 years old. He sits in a wheelchair with his hands resting comfortably in his lap. His shirt is severe, buttoned right up to the neck where a white ruffled collar peeks out. He looks at the camera gravely but confidently. This is a rich kid. This is a loved kid. This is a disabled kid. His wheelchair fair gleams as if it was polished just before the shot was taken. The photo and it's elaborate frame and the case must have cost a small fortune at the time. I found it on ebay a few years ago when I was collecting antique photographs of disabled children. I gave up collecting when someone at a conference stole the whole collection out of my briefcase, that act disheartened me. They didn't get this one because I never carried it with me.
But here it is. I like to look at this kid because he, in his small way, gives me tremendous hope. Someone who knows the history of photographs would have to tell me when daguerrotypes were made, but it was generations ago. You hear only about how kids with disabilities from the distant past were hidden away, denied, institutionalized, brutalized even murdered. But here is evidence that the human heart did not learn to love with the 60's generation. Here is evidence that disability didn't always, for everyone, equate shame.
I love what this kid represents. He represents the idea that love and hope have always been eternally present for people with disabilities. That no matter how harsh the prevaling attitude there will always be someone somewhere with their heart intact. It means that we belong to a long heritage of caring - a long heritage of hoping and a long heritage of remembering.
I'd love to show it to everyone reading this but all I can do is describe what it is that I hope and tell you why I find it dear. Funny, I'm glancing around my office now. Right above my computer is a photograph taken by a man with Down Syndrome, a painting of an ocean scene done by a leader of self advocacy in northern California sits on the opposite wall, a box made by client artisans from the Tri-Town and District Association for Community Living sits on my desk beside a huge statue of Edward Sissorhands, a photograph of my beloved dog - Eric sits like a guide dog beside an autographed photo of Helen Keller, and then there are the usual pile of discs and papers and staplers and pens. I like being surrounded by these things - they give me pause in my day to just reflect on history, art, creativity and possibility.
But it's this picture, and the mystery it holds, that grips me most. Who was he, and how was it that this picture was taken? My whimsical side thinks that this picture was taken in the past to give the future a shake, tell us that we aren't so special and to get on with providing what this kid got.
So, lets do just that.
Wednesday, November 15, 2006
Truth to tell, I hated walking into that school the first time. Memories of "Lardass" and "Fatso" echoed along with my footfalls in the hallway. No one called me names there that day, probably because I was being escorted to the 'special' classroom by the principal who was waxing horrific over the 'lads' behaviour. I was to design a behaviour programme to bring his behaviour under control. That was my job and I would do it.
But after a couple of visits to the school, I fell into chatting with Brian. He had the sullenness that youth are particularly good at - but he thought I was funny and he was easy to engage in conversation. I wanted him to talk to me about the teasing. I wanted to surprise him with the news that bullying went back to the Roman Empire - you know, when I went to school. Finally he openned up.
The upset about the teasing I expected but what was troublesome was his denial of his disability. "They called me retarded. I'm not retarded," he had said. I wanted him to understand that he was different, sure, but that he shouldn't be subject to mean taunts. The word 'disphobia' now growing in common use to describe hateful and bigotted attitudes and practices towards people with disabilities had not yet been conceived or coined - but I wanted him to understand at least prejudice. The best way to deal with prejudice is pride, not denial.
"Look at me," I had said, "I'm fat."
"You're not fat." He said. A simple statement. Well, if I'm not fat then 99 percent of the world is anorexic. "Yes, I am" I said. He was resolute, but I insisted. He relented, "Well, you aren't fat to me."
"Brian, I am fat. It's OK that I'm different. It's not OK for people to call me names. It's not OK for people to laugh at me. They're wrong to do that. But, still, I'm fat."
"But 'fat' is a bad word. My mom told me not to call people 'fat'." I told him that the word 'fat' just described me. Calling me 'fatso' or 'lardass' was something very different.
Brian, like many people with disabilities, could see the disabilities of his peers while his own was invisible to him. He wouldn't admit it. Not yet. The cost of being disabled just seem too high to him, but I knew the price that denial would one day take on his soul.
We spent that year working on a behaviour programme that had data points and graphs. But we also spent the year talking. Brian slowly started to identify has having difficulty with learning and maybe being a tad slower than the others. As his self honesty started to grow, so did his self esteem. People who lie to themselves, never ever ever love themselves.
The teasing slowly stopped because Brian started to understand that he didn't have to react, more, he didn't need to care - the people who called him names were just mean. Near the end of the year I was walking with him at recess and one of the lovely children, one of the one's who gives her mother such joy, she was such a dainty tresure, called out, "Who's your fat friend Bryyyyyyyyyan?" I've always thought it fitting that those who spoke ugly words always said them from ugly mouths set in ugly faces.
He looked at her and said defiantly, no shame in being with me, "His name is Dave." That was it.
On the way back to school he said, "You know you are kind of fat." I laughed, loud, it startled him. "Yeah, Brian and you're kind of slow." He laughed too and raced ahead of me to the classroom. When I got there he said, "You're a bit slow too."
I leaned up against the wall and laughed till the tears came flowing down. Brian grinned for a bit and then burst into giggles. The teacher, always sensitive to the moment shushed us.
Brian, the slow kid, did just fine.
Tuesday, November 14, 2006
I think of them when I think of Paige. I met her in Maine, I think, she was a surprising woman. Living a rare life - with a rare disorder that was supposed to kill by 6 - she proved that doctor's at best, guess. When I met Paige she explained to me that she had Trisomy 18 (I think) and had been misdiagnosed as having Down Syndrome. She did have an intellectual delay, but it was so slight to be barely noticed. I met her as she was going to college taking Early Education as she wanted to work with children. Her goal came from her experiences being placed to work on wards with babies in an institution where she lived for a long stretch of her life. She loved the role that she had of care providing. She loved that she cared for her own. She wanted the babies that she touched to know of her care - of her hands touching them gently. She had seen what institutions did to adult and child alike. She wanted to give, for just a second, a loving parent's touch. She almost cried as she explained to me that she could feel the children loving her back.
And Stanley. What a gentle gentle man. I met him on my first visit to a group home that was oddly structured, it was two homes in one connected by a passage way. It was way way way more "home" than it was "group". I still remember that house and the people who worked in it. I remember then learning that it was possible to provide real love and real respect for people with disabilities. I was there to meet about those who had behaviour problems and what I got from staff was unstinting concern for those in their care. It astounds me still and whenever I drive by where the home stood I always, always point it out to Joe. Now he points it out to me before we even get near it, "Isn't that where the house was that ..." And then he laughs at my predictability.
But I met Stan at that house. We chatted one day and he talked to me about the institution that he had moved from and he told me about his 'boys'. It took a second but then I realized as tears sprung to my eyes that he was talking about some of the younger guys who had moved on to the ward and, in their first days, were frightened. Stan would seek them out. Make sure they were OK. Never was a human being more worthy of being called a gentleman. For he was that. I was touched to know that where there needed to be a loving Dad ... there was Stanley, where there needed to be a loving Mom ... there was Paige. And Ron and Ruth and thousands of others who love without counting the cost - because they want to - because they can.
It amazes me that there is enough grace in the universe to light the path of a needy boy into Ruth's shop, into Ron's presence. It amazes me more that that same grace placed Paige where she needed to be, and placed the responsibility to love into Stan's heart.
We are not alone.
Monday, November 13, 2006
"So, what are you afraid of?" I asked him, curious what he would say. He'd lived a life unimaginable. Institutionalized young, incarcerated forever, finally free - to old to do little but breathe fresh air. Activity swirled around us, others busy with their lives paying no attention to the two of us, just sitting. He took a while to answer, I'm ok with that, I don't mind waiting. This was something I would have to learn.
Years ago a co-worker and I went out for lunch. We thought that we ought to be friends but we weren't. We had a social circle that overlapped, interests that both ran parallel and even occasionally intersected, but we had never managed that 'rhythm' that friendships have. So we went to lunch. Just lunch. It was horrid. Just awful. He was a slow talker. No ... not slow ... ssssslllllllooooooowwwwww. Frustration bubbled up in me. "Spit it out, just spit it out," was all I could think. My eyes were rolling around in my mind if not my head. I kept cutting into to finish his sentences. I could see frustration build in him too. All my friends, that's all of them, are quick talkers. We finished lunch and both said, "Let's not do this again." We were never enemies, nor did we dislike each other, but even so we avoided social situations.
So becoming a slow listener was a ... um ... journey. But finally the old man at the table was ready to answer. "I think I'm afraid I'll have to go back." He surprised me. Community living, for him at his age, wasn't much more than a room in a house and in many ways his life seemed smaller here than it had back on the large ward. "I like it here, I like having my own room," he continued. He liked being free.
This was a thoughtful old man, I realized, I asked him then, "Why do you think you'd have to go back?" This time his answer came more quickly, "Because they'll give up on the idea that we should live here and put us back there."
He was afraid that our committment didn't run deep enough. That we'd give up on the idea of community and that he'd end up back in the land of the long corridors.
He's one of our veterans. He always made me feel sad. That the 'idea' came a little to late for him. He knew, in his own way, that he was one of the powerless - one who's life was affected by what other people wrote on paper - what other people thought - one who's life could be changed by the stroke of a pen. I don't, I can't, remember his name. When getting ready to write this, I dug around and found my journal notes from our meeting, but his name is only recorded as "W". I used shorthand in the arrogence of youth - my memory would always keep the moment alive.
I was going to write something about Paige and George today but somehow, though I picture them both well, it was "W" that beckoned my memory. I don't know why. Paige, I remember too, of course, and Stanley - always. But I will save them for tomorrow, or maybe later this week.
Because today, "W" in Vancouver comes to mind. I wasn't scheduled to meet with him but he made it into my journal anyways. I was at the group home to consult regarding someone who lived with him. But "W" was there, sitting at the table, sipping on cooled coffee. I, being early, just sat with him. The question of fear had come up because the staff had just told a really funny story of getting in her car that morning to find spiders crawling up and down the driver's seat. She had exploded out of the car screaming like she'd seen the "devil himself". We'd all laughed and then, I just asked "W" about his fears.
He, then, having confided in me, asked me what I was afraid of, tit for tat.
I took my time. "W" was in no rush.
"Before I talked to you, I think I would have said, 'heights'. But now, I don't think that's the best answer."
His eyes asked the question, but he waited.
"I'm afraid that we'll give up on the idea - and people will have to go back."
He smiled, glad to be understood.
Sunday, November 12, 2006
His task was simple. Wipe the table. Move to the next. He was so methodical. He carefully wiped each table, one after the other, and on each table he set the salt, pepper and napkin holder in a perfect symmetry. No pleasure showed in his face, only concentration, the desire to do the job right. I noticed the woman at the cash register watch him and her love reached out to support him through each movement. She nodded at each correct completion and tensed at each new table. It didn't take a genius to see her will him through the task as she had probably willed him through much of his life. He never glanced to her but I'm sure he felt her gaze.
In the middle row of the three in the restaurant sat a woman distractedly reading the newspaper, checking her phone for a message that wasn't coming and glacing out the window for the plane which had not yet arrived. She didn't see him but then he was standing there, right behind her. His eyes focused on the table. He saw the dishes that needed to be removed and a table that needed to be wiped. Indecision wafted over his face. He stood there. Lost.
I glanced to his mother. She had her arms wrapped round her, holding herself back. Her natural desire to help, to intercede, seemed captured by those arms. She did nothing. She waited. Then, suddenly, he moved. He stepped around the woman at the table and moved to the next table. She sighed and her relief almost undid her. She caught me looking and she said simply, "My son." I looked at her and said, "I know." We smiled at each other, then she was back to watching him.
The hardest thing to do - is wait - give over - stand aside. People never grow if they are constantly pruned - interfered with - assisted. He needed the chance to think things through. To make a decision. To figure it out for himself. His mother gave him those gifts. She didn't prompt - she let him think for himself. Her faith in him was shown by the time she gave him. She learned the most important thing that she needed to learn - "It's not about me, shut up."
When working with the self advocates from the Essex County Association for Community Living as they developed a "Bill of Rights" for service, they came up with one that was astounding. "The right to the extra five minutes we need to think." Self advocates made it clear that they knew that they needed a bit more time to process and wanted us to just 'shut up' and let them do it.
I'm glad I'm the grandchild of farmers. I learned that between the planting and the reaping is always the waiting - the watching - the trusting. The mother in the restaurant had planted a skill in her son and had the courage to give him the dignity of time to grow. And what do you know - he did.
Saturday, November 11, 2006
I couldn't agree more. My experiences in working in two institutions, one small, one huge, left me with many impressions. But I have differing impressions now than I did then. When I first walked into Glendale in Victoria there were few community options. Words like 'integration' and 'inclusion' had been spoken but not realized. I was taken aback, to be sure, but mostly by the difference of those with disabilities. I had not been around people with disabilities, never having been exposed to that kind of difference, they truly seemed like 'them' not 'us'.
It was with pride that I described my job to others at the time. I felt that we were offering a real quality of care. Our desire was to provide real care and there were moments of real joy. I knew that the institution was a step up from what had been done in the past to people with disabilities and that there were those who fought and fought hard for places to care when the rest of society didn't. I was proud to be part of the heritage of caring.
There are people I remember from those days who stay with me. People who were some of the kindest and most caring that I have ever met. The stereotype of institutional staff just didn't apply to them. They brought compassion through the door with them and they insisted that we all act with kindness. I remember once sitting around with staff talking about the residents of the ward. We were imagining who they would be if they didn't have a disability. Who would be a carpenter, who would be a chef, who would be a womanizer, who would be a politician. It was fun. We listed each persons qualities and discussed who we thought they would have been.
Win, the supervisor, came in and listened for just a minute. Then she gave us all a lecture. How dare we speak that way of the people in her care. They were who they were, they were who they were intended to be. The conversation we were having suggested, to Win, that they were somehow 'lesser' than they would have been if they were born normal. That was an insult to who they were. If that's how we thought of them - as failed normal people, we should think about working elsewhere. This was a place that served people as they were, not as they would have been.
She turned on her heel and walked out the door. Sure, some of the staff gave the 'what's up with her' look. But her words hit me hard. I remember them clearly as if they were spoken yesterday. She was right. Win was an exceptional person the fact that she worked in an institution did not lessen who she was - the fact that she cared makes her exceptional.
Of course I have my regrets from those days, things that I would do differently now. But I also have regrets from my early days in community service. Though the regrets are painful, I'm glad of them. They prove to me that I'm still growing, still learning. I look back at what we've done, and more personally, what I've done - and wish I knew then what I'm only learning now. But I can say, for the most part, that my intentions have never changed. That I always wanted to be kind, always wanted to be part of the solution, always wanted to be deserving of the trust given to me.
So, as I write, and as I remember the past, please understand that I see the past for what it was - a misguided attempt to do something good. I want institution doors to close because people should not be jailed for the crime of difference. People belong at home. That's pretty much the long and short of it.
Thanks so much, Sonja, for the response, thanks for thinking enough about what I wrote to disagree with me and give me the opportunity to dig deeper into the thoughts that I have. Thanks to everyone who leaves a response, it encourages me and hopefully encourages dialogue. That's what I started this blog for.
Friday, November 10, 2006
In Utica, New York, the Utica Knitting Mill needed workers desperately. Women had come into the work force but there weren't enough of them. The knitting mill was important to the war effort and there was almost panic as they looked for hands to put to the task. In Utica was a home for the 'feeble minded'. An idea formed in someone's head.
24 women were offered the offered the opportunity to leave the grounds of the institution and move into a large house near the knitting mill. They were put to work in what is today called an enclave. They worked together. They worked as a team. They were told that if they worked hard, they could continue to live in the community - out of the institution. They were offered freedom. It was an opportunity that they would grasp with both hands.
Their productivity astounded everyone. Soon word got out. Feeble minded women acted with one mind and one spirit and came to work every day. They broke production records. They never took a sick day. They worked. And worked. And worked. Someone in New Zealand's Department of Mental Hygiene heard of the 24 women and laughed. He assumed that the women weren't 'real', that they were 'misdiagnosed' that they were carelessly categorized. He made the trip to Utica with psychologists to measure the minds of the women. He wanted to prove to himself and everyone else that what the miracle in Utica couldn't happen.
But a miracle had happened. 24 "feeble-minded moronic" women took the community by storm. He went back, this government official, to New Zealand and began asking whole new questions about what people with disabilities could do. He began thinking, for the first time, that maybe the community could benefit from the presence of all it's citizens. Thus began the movement toward community in New Zealand.
Because of 24 women. In Utica.
Years later as the mill was to close the 24 women were the last to be laid off. Not because of benevolence. Not because of pity. But because, to the end, they out performed and out produced the others working at the mill. First they beat the 'normal' women, then they beat the 'normal' men. It seemed that they got the taste of freedom and would lose it for nothing.
I found this story is a musty old book called, 'The Making of A Moron," by Niall Brennan published in 1953. I read it in University and then found it years later, how is it that the older you get the more interesting history becomes, from a bookseller on the internet.
I happened upon the story.
No one told me.
It was told in no class I took or training I attended.
We have our hero's in this field.
We just don't honour them.
But I thought of them the other day as we drove by Utica on the freeway. I saw the sign and they came to mind. I didn't know how to pay tribute to them.
This post today is my feeble attempt to honour women who's minds were anything but.
Thursday, November 09, 2006
He's bagging groceries. He looks up at the customer, smiles, then goes back to work. Not a word was spoken. But a sermon was given.
I'm in one of the motorized wheelchairs provided by the "Stop and Shop" grocery store and he caught my eye as I rounded an aisle. There was an intensity about how he was bagging groceries that I noticed.
But what I really noticed was that he had Down Syndrome. That he was at work. That he didn't even notice that he was making a political statement. That he was proving myths wrong. That he was picking up stereotypes and smashing them to the ground.
I wonder if anyone has told him.
He's Rosa Parks. He's Emily Pankhurst. He's Harvey Milk.
If God is "I AM" then this guy's, "HE IS". And he is ... and he is brilliantly.
The sheer act of being. Being there. Being present. Being. It's an act of courage. The stares, I'm sure he's noticed. The nudges, I'm sure he's noticed. But he's there. He's working. He's being.
We closed the institutions. You and I. But he is doing something much greater. He's integrating the community. He's making the way possible for others. He's cutting the path.
I wonder if anyone has told him.
But I want him to know, really know, that people like me ... and maybe you ... are really really proud of him.
Wednesday, November 08, 2006
I told him that the book, the aRe word, was sold out. He said that what he was looking for was a book for kids about bullying and teasing especially of kids with disabilities. He went on to explain that he had two kids who were attending the local school. He said that when he heard the conversations at the other tables he got worried that his kids one day might be confronted with someone with a disability and might be tempted to discriminate at best or bully at worst. He said that there was no way he wanted his kids to behave that way. I showed him one of our children's books that had characters with disabilities in it and was about both teasing and tolerance. He actually asked, "Can I buy this even if I'm not at this conference." Ummm, yes. He paid for the book, said thanks and then headed back to his conference.
The world just may get better.
And so did the day.
About an hour later another young man (to me 40 is young) came and asked if he could tell me a story about his two boys. Of course, public speakers and blog writers never turn that opportunity down. His two boys are typical brothers with a difference. One has an intellectual disability. He says that the kids fight as all kids do but that he has to watch them because the kid with the disability can really take the kid without one. As it turned out both boys were being bullied at school.
As a dad, he did all that he could do, including talking to the school. The school was aware of the problem but did nothing about it. (To schools 'being aware' in their minds is often equivilent to doing something about it.) One day his typical kid asked his father's permission to take on the bully and fight him if necessary. Dad didn't like the idea but said, "If that's what you have to do to make it stop, go ahead." Well, the kid took on the bully and the bullying stopped. Dad just assumed that the bullying stopped for both kids but he was wrong.
A few weeks later he got the sense that something was bothering his disabled son so he asked and was told that he was still being bullied. He asked his son why he didn't take on the bully like his brother did, if he could beat up his brother and the brother could beat up the bully, it seemed logical. His boy said that he wouldn't hit the other kid because he wouldn't his someone with a disability. The dad was taken aback and asked if the bully was another kid in the special classes. His son said, "No, he has a disability with his heart." Dad said, "You mean he has heart problems." His son looked at him and said, "He doesn't know how to love."
That was the disability that his son felt sorry for. That the only disability that can cripple. That's the only disability that is deserving of pity.
Good parents. Good kids. Good future.
Some equations are truly simple.
Tuesday, November 07, 2006
to read something truly frightening.
Anyone with ideas about how to respond, please post.
She slammed at that computer like a pro. She clearly was comfortable with a keyboard. I did wonder, because I'm catty, how women can type with nails that long. But type she could. She kept glancing at me, I think she was hoping that I'd just check emails and leave. Little did she know that she was looking at a blogger-guy who had a post to clean up and get ready.
Finally she grabbed a cellphone and made a quick call. She talked to someone using computer terms about a website. Finally, with one appraising look at me, she went ahead. There were several websites she wanted linked to ... there was one in Florida for female escorts (there is a euphemism if I ever heard one) then a fantasy one and a leather one. She actually talked about how feathers were 'in' and cuffs were 'out' so some of the photos would have to be changed. It was like she had forgotten that I was there because she was so in to the conversation and into the web site she was building. She was a business woman doing business.
I just stared at the computer screen thinking, "Oh, my God, she's a hooker." Tee hee. Giggle. I'm 53 years old and I work at the respected end of the sex trade and I still turn into an adolescent at times like this. I looked at the computer screen but I was really just listening to her call. My face looked serious but I really wanted to let out a guffaw. Off the phone now she was back at the keyboard. I got bored and then I checked the email and found that there was one that Joe needed to know about so I picked up the phone and called him to come down. She heard me make the call, rolled her eyes, and folded up her laptop and left the business office.
As I waited for Joe to come down I thought of the thousands of people with disabilities that I have taught about sexuality. After every class where I've taught body parts ... you know the drill ... ... testicles ... vulva ... breasts ... I note how the class is uncomfortable and they get silly giggling and breaking tension with humour. It always upset me that adults would be so uncomfortable with something so benign. I saw it as a result of their oppression as disabled people.
So Joe arrived and before we looked at the serious email, I said, "OK OK OK Do you remember the woman who was in here when I got here?" Joe nodded and said, "The pretty blond woman on the lap top?" I started laughing and he looked confused, "Oh, yeah I imagine that she's really good on a lap top ..." he looked confused. "Dancing." I explained. When he didn't get my little joke I said like a frat boy on his first day in the big city, "She was a hooker!!"
Joe an I both giggled as I told him about the feathers and cuffs and escorts in Florida. Giggle, giggle, giggle.
Ummm. Maybe I'm not so sophisticated and disabled people aren't so abnormal. I'm never, ever going to make that assumption again.
Monday, November 06, 2006
As we approched the line up Joe handed me keys without my asking for them. I just can't do line ups without falling over. So it was off to the car. I looked around, the view from disabled parking really is better than from the other stalls - hah. When Joe got in the car he was grinning. I asked what had happened. He said that he was checked out by a chubby woman who eyed one of the pies.
"Looks good, hey," Joe said.
She said, "I'm imagining it with a bit of ice cream, or maybe whipped cream. I'm looking beyond the pie." Joe and I both laughed.
I remembered working in a group home with a woman with a disability who had wanted to learn to bake. We had to make several pies for a bake sale. I was just the watcher / washer as pastry to me is just a miracle. Loaves and fishes ... please ... flaky pastry now THAT'S divine. We had four or five done when the other residents came home from an outing. She looked at me and said, with no hint of humour, "Now comes the most important part."
I asked her what that was.
"You've got to keep your eyes on the pies."
And you know.
In this life.
You truly do.
Sunday, November 05, 2006
Well, I'm no American, but I fell into the "must read" category. Try as I might, at first, I couldn't find the story between the covers. I read all about how glass grew out of this kids head and about a magic troll that makes lottery tickets winners, but no quotes from G. W. Bush or the Pope as promised on the cover. Oh, well. Then suddenly I found it, it was obscured because of being placed next to a full page that had the headline, "SEX - HARDNESS - ENDURANCE - PERFORMANCE." Frankly, what could compete? The article was completely frightening as it described the angel Metatron (I'm truly not kidding) with a bloodthirsty agenda. Whew.
So I thought about this idea of avenging angels saving us all. And frankly, I don't like it. Not that I don't have an enemy or two I wouldn't mind being smote, or smited, or however you conjugate 'to smite'. Having angels do it is just way to, I don't know, easy. Lazy, almost. Besides, I hate cleaning bird droppings off my windshield, I can't imagine scraping off Angel Droppings. Ugh.
I think I first cottoned on to this when I was in University. I was part of an outing to a 'special school' for 'special kids' using 'special education'. When we got there it the recess bell had just rung and there was absolute pandemonium in the hallway. There was one little boy, cute as a button, down on one knee working so hard to tie his shoe. Concentration was all over his face and you could almost see the task analysis used to teach him as he worked through the steps. Then he'd get jostled by another kid and have to start all over again. Soon he was the only kid left in the hallway. In the quiet, he attempted again.
One of my classmates did what we all wanted to do. She leaned down to him and gently said, "Here, let me help you with that." The kid didn't even look up from what he was doing and said, clearly through ill formed words, "No, I can do it myself." And in a few minutes he proved his words true.
I've seen that scene over and over again through the years, helpful hands rejected as hands attached to slow learners swatted them away. "I can do it myself." Frankly, I've had my hands swatted away as I reached to help where no help was wanted, or indeed needed. It's tough enough to have a disabilty but to be required to hand over the ability you do have to a 'helping other' is demeaning. I understand that now, in a wheelchair when I'm out in public, I get offers of help from the oddest assortment of people. I know that they are kindly meant but I don't want help (unless I ask for it). And, in truth, I find the unsolicited offers somewhat offensive. "I can do it myself." Swat.
I can see how some disabled people can get lazy. They learn it's just easier to let someone else do it for them. But then, I see the same thing in society today. Let someone else take care of the mess that's been made.
But I don't want avenging angels fixing things. Maybe I'm naive, or maybe after a year in a wheelchair, I've finally caught that little boy's resolve.
"We can do it ourselves."
It might take time. It might take prayer. It might take courage and resolve. It might take changing. It might take steadfastness. It will surely take patience.
"We can do it ourselves."
For surely, peace made is more powerful and more lasting than peace imposed.
"We can do it ourselves."
Does anyone know if ebay sells giant angel swatters?
Saturday, November 04, 2006
"What's with him?" We each asked each other at the same time.
I sat in court day after day listening to testamony. It was the first time that I was involved in a case that landed in court. She had told of abuse, no tell it like it was, she reported that a staff had d her. The police had listened and investigated. Now came the trial. It was to be a big day. Several of the clients who lived in the same group home were going to testify as to the staff's behaviour on that day. A lot hung on their testimony. Adopting a Mount Olympus attitude, the judge hid behind his robes and a large mustache. He came in, we stood, he sat, we sat. That's power.
Manny was the first to testify. He was clearly excited about the whole thing, he waved at everyone he knew in the courtroom. I saw the Crown shudder as she saw all the preparation going down the drain. Manny took his place in the stand and then turned to the judge and stuck out his hand saying, "Hi, Judge!" The judge waved him away. Manny, who had not yet sworn to tell the truth, did anyways, "That's rude." Then he gave the judge another chance and stuck his had out again saying, "Hi, Judge."
They stared at each other for a few seconds and I think everyone in the courtroom stopped breathing. The judge blinked and leaned forward and shook Manny's hand. Manny smiled and said, "It's better if everyone is nice."
The judge had a "What's with him" look on his face.
Tonight at the hotel I was checking in. There was a mixup about the room. At first it looked like they wouldn't be able to honour my request for an accessible room. I was upset. My dog had died. I got a email from a friend that came out of the blue. My emotions were all over the map. I went to autopilot and prepared to let loose Meanie Me. But suddenly, I saw the border guard's smile. Manny's voice popped into my head, "It's better if everyone is nice."
I smiled a border guard smile. She smiled back and then told me that everything was fine and I'd be getting the right room. I offered her my hand to shake, which she did.
Out of the corner of my eye I saw the look she gave her co-worker, "What's with him."
You know what, it's not only better if everyone is nice -- it's easier too. Besides I'm striving to become the person my dog thought I was.
(Readers: Sorry for the lateness of this post, I had difficulty getting blogger to post for me today, I tried several times. Too, I have reset the controls so that anyone can leave a response. I didn't know there were options until I tried this morning to get blogger to work.)
Friday, November 03, 2006
It doesn't matter that his legs don't work anymore.
Cause I know. Deep in my heart, I know - he now has wings.
Life hurts sometimes.
I hurt now.
That's the cost of risk. Of daring to be human, to be in relationship, to love. The depth of my grief is equal to the heights of my joys. I don't want to give either up. I have felt sorrow almost break me, but I've felt joy overtake me. It's a rough ride through life. I don't get frightened at airplane turbulence because it's nothing compared to living a day on the ground.
Funnily, we want to protect people with disabilites from pain. From risk. From real life. People with disabilities have been disallowed to attend their parents funerals (because it will upset them) or disallowed to try something new (because they may fail). Being bound in chains of feather pillows is still being bound! In their wonderful book about people with intellectual disabilities dealing with grief called "Ya Got People," Caroyln Bowling and Jeffery Wilder take a disability rights approach to grief. They are passionate in their belief that people with disabilites have a right to grief, feel loss, and in many ways - live the life they are meant to live.
A woman once told me that she would often bring her dog to work at a group home and that the dog was wildly loved by all the people with disabilities in the house. When the dog was hit by a car she worried about how people would take it but felt that they should know. She went and patiently explained that the dog had been hit by a car and had died as a result of injuries. They were all sad but the guy that she worried about the most didn't seem all that upset about it. The following week when she visited the home he rushed out and asked, "Where's the dog?" She again explained that he had died. He scrunched up his face and said, "He just keeps on doing that doesn't he?" and went on his way.
He didn't get it. Not because he had a disability, not because he couldn't understand, but because he had been kept separate from all experiences of loss. He had been protected. This isn't "ignorance is bliss", this is ignorance as control. This is just unfair. He lost the opportunity to grieve, to say goodbye - instead the wound stayed fresh every time she came with the dog he asked about the dog. When she wanted to teach him about the finality of death people worried that he would be 'upset'. Ummm, you're supposed to be upset. It's NORMAL for heaven's sake. I wish I had met Carolyn and Jeffery back when I had this conversation, I would have known better how to advise the woman telling me the story.
I don't want to be protected from my feelings of grief. I don't want to have some pill take away the sense of loss. I want to live through this, I want my grief to be part of the memory of love and companionship that we shared. It's OK to hurt. And I'm a modern guy, it's ok to cry.
Life is hard, sure, but it's also has moments of joy, grace and love.
I love sweet and sour (veggie) chicken balls. I also love the sweet and sour life I'm living.
So here's to love, pain and the whole damn thing. Here's to lives lived, hearts broken, tears shed, giggles giggled, love shared, secrets whispered ... here's to all of us living all of life.
Thursday, November 02, 2006
I understand. I'm old. I get tired like that too. There are days I don't want to even try either. At two or three in the morning we were both awoken by the sound of Eric breathing. It was hard for him to simply pull air in and out. I turned the light on to see him and he didn't wake. He just slept. Peacefully. Like he will, forever, in only a few hours from now.
We, Joe and I decided, that we would wait until Friday. This would give us time to spoil him unstintingly. Forget what's good for him, he's getting what he likes. Like me, he's a sugar boy. He loves all treats, of course, he's a dog. But when he's got sugar in his mouth his eyes go big and it's like he can't believe how good it is. Yesterday he downed 20 Timbits. Today, he'll get cheesecake. If he wants it, he can have it. He's earned it.
He cared for me through two life threatening illnesses.
He stayed with Joe, supporting him all the hours I was in the hospital.
He listened to me as I cried my frustrations out to him.
He was Joe's constant companion on car rides and walks around the property.
He stood steadfast when I needed a firm anchor.
His heart was big enough to love us two as one.
So, let him eat cake. He's enjoying the food but you can tell he knows. Always a social animal, he spends most of his time - when not licking icing off his face - sleeping by the door, or outside on the deck. He comes in to be petted, but only a little. He is withdrawing from us - like while he's still here, he wants to prepare us for the emptiness.
And it frightens me. Sometimes when he's been out of the room for an hour - something he has never done before. I call to him, panic filling my voice, and he comes. He pads up beside me and gives me his head to scratch. But he looks at me like he's saying, please Dave, let me go.
And I will.
Friday at 2.
Because I love him.
Because we both love him.
Wednesday, November 01, 2006
The bong sound let me know that it had arrived and I stepped on with a woman with a disability who was riding up to the second floor to pick something up that was needed for the day programme on the main floor. The door closed with the speed of a glacier racing for the equator and we began our long ride up. I didn't want to just ride in silence so, not recognizing the young woman, I asked her what she did at the day programme. She told me that she answered phones and worked in the office. Then she explained that she had to go upstairs to get something that she needed for her work.
We were quiet for a second and then I smiled at her and said, "This is the slowest elevator in Toronto!" She smiled and then agreed.
"We're lucky it's this slow," she said smiling back at me.
I feel very lucky about many things, but this elevator isn't one of them so I said, "Why are we lucky?"
She looked confused that I didn't get it so she said, slowly, "Because people with wheelchairs use this elevator."
As someone who uses a wheelchair part time, I still didn't understand. "Why is that lucky for them?"
"Because," she said like she was talking to another dumb staff who didn't get it, "then they don't have to rush to get in, it goes slow so they can relax."
"Oh," I said.