We'd gone downstairs for tea at the small coffee shop on the main floor. I was bundled up in housecoat, hospital blankets and my little urine bag rested by me feet on the footrest of the wheelchair. I didn't know then that my life was going to change and that wheelchairs would become a major part of how I got around. All I cared about was that I was out of intensive care and heading down for tea. This must, I thought, be a good sign.
I remembered all this yesterday, being home sick, talking about going to the hospital to get checked out. Instead, I just took nap after nap and drank ginger ale. But laying there I couldn't help remember how I transitioned from walking to rolling. How sometimes fateful things happen and you don't know that they are fateful until a while later. But back to the coffee shop.
Joe pushed me up to a table and went off to get us each a tea. The coffee shop is located right at the edge of a walkway and you can look down to the next floor where there is a larger cafeteria at the crossings of several pathways to specialist services. Joe set my tea down and we were both quiet as we drank our tea.
A fellow came in for coffee in a power chair and glanced around the coffee shop nodding at me, and only me as his gaze swept the room. After he'd gotten his coffee he pulled up to the table next to us and asked without any introduction, "So you disabled permanently or are you just hospital disabled?"
I was nonplussed. It was the first time I wondered if I would be in the chair for the rest of my life. I knew that I still couldn't walk without someone right beside me. I knew that long distances were out, for now. But I didn't know what the future held. The doctors had been non-committal and fairly uninterested. I had come into the hospital with two concerns, one a mammoth infection, the other was the loss of balance, of feeling in my legs. They were very focussed on the infection and had barely even begun to consider the legs.
"I don't know." I said and explained the perdicament.
"Well, if you are disabled," it's no big deal. "I've been so for most of my life. It's no big deal."
"What about accessiblity, what about attitudes?" I asked. He looked confused that I would even know about those things. "I work with people with disabilities."
"I'll grant you, it may be a big deal to others. It may be a bit frustrating at times. But that doesn't mean it has to be a big deal to you."
The converstation moved on to other things. I never did understand what brought him to the hospital that day, he was evasive on the issue. He glanced down at his watch and announced that he had somewhere to be. We said goodbye and he took off.
Before I got the news that I'd need a wheelchair there was someone to tell me how to think about it. How I shouldn't let the frustrations of inaccessibility or the attitudes of others affet me. How it shouldn't be a big deal to me.
And it isn't.
What a gift that guy gave me that day.
I remembered the two women who I met in Michigan. They were with an association of parents with Down Syndrome. Part of what they did was meet with new parents and talk to them about what it is to parent a child with a difference.
I hope they remember to say.
It's not a big deal. Beyond the frustrations of dealing with others, beyond the lack of resources and access. It's not a big deal.
Because, as I've heard over and over and over from others, it isn't.
Tuesday, August 21, 2007
Monday, August 20, 2007
Two O'clock
At about two o'clock this morning I woke up bundled in sheets and comforters. It's been unnaturally cold here over the last few days and it was nice to feel the warmth all around me. Which is completely not like me. I'm the kind of guy who sleeps just with the sheet covering me in the darkest winter night. I don't bundle up. Ever.
Unless I'm sick.
And at two in the morning I realized that I was really sick.
I felt nauseous and sweaty and had aching in all my joints. It hurt to turn, it hurt to lie in one place, and then I realized that I had a big day coming. I was doing consultations that have been set up for weeks. I fell back to sleep thinking ... what to do ... what to do ... what to do.
On rising I felt no better and in fact a wee bit worse. Even so I began to prepare for the work day. It took mountains of energy to move. I stood and looked at the shower then back at the bed. The bed won.
I'm taking the day off to get better.
I'm sorry that it will be a bother for a lot of people.
But I've spent much of my life teaching others to take care of themselves. To speak up and be heard. To assert themselves when necessary. So shouldn't I occasionally listen to my own speel? Just this once, those who can - teach?
What's the worse that can happen?
I'll feel better tomorrow.
Forgive me but this is the best I can do for a blog today.
Night now.
Unless I'm sick.
And at two in the morning I realized that I was really sick.
I felt nauseous and sweaty and had aching in all my joints. It hurt to turn, it hurt to lie in one place, and then I realized that I had a big day coming. I was doing consultations that have been set up for weeks. I fell back to sleep thinking ... what to do ... what to do ... what to do.
On rising I felt no better and in fact a wee bit worse. Even so I began to prepare for the work day. It took mountains of energy to move. I stood and looked at the shower then back at the bed. The bed won.
I'm taking the day off to get better.
I'm sorry that it will be a bother for a lot of people.
But I've spent much of my life teaching others to take care of themselves. To speak up and be heard. To assert themselves when necessary. So shouldn't I occasionally listen to my own speel? Just this once, those who can - teach?
What's the worse that can happen?
I'll feel better tomorrow.
Forgive me but this is the best I can do for a blog today.
Night now.
Sunday, August 19, 2007
The Story About George
It was a weekend for parents. It had been well planned, they had day activities for children (of all ages) and long breaks with good food. The idea was to create an atmosphere where parents could both get information and be pampered all at the same time. It was perfect for me, as the speaker, too. I mean I like long breaks and good food too.
Though most of the parents came in couples, my audience was primarily singles. Many of the dads decided that goofing off in the city was a much more interesting way to spend time than sitting listening to someone talk about their child's disability. None of the women seemed to mind, some even seemed relieved. There were a few men there, all but one sat dutifully by their wives sides. This guy just sat on his own, listening and taking notes. He asked a couple of questions and there was something about him that really impressed me.
At one of the long breaks he sat down beside me and we chatted. It turned out that his wife was with him but was staying back at the hotel keeping an eye on their son. They felt that he was too young to be left in day care and they didn't want to miss the opportunity to get away and to learn things to help them parent. "Before you even think it," he said defensively, "I'm here because I'm better at taking notes and keeping information arranged than my wife is. I take just as much care of our son."
We chatted about their little boy, Owen, and he was bubbly with love for the kid. Something was really odd though. He seemed to have had no difficulty adjusting to a child with Down Syndrome. Most parents get to the point of total love and acceptance of their child, but for many there's a bit of a journey through grief and a time of adjustment. I felt none of that from this man. I didn't know how to ask, but I wanted to know, "Excuse me for asking, and there is no easy way to do this, did you have any difficulty at all with learning your child had Down Syndrome."
"No, not at all," he said and his smile widened.
"None?"
"None."
I told him that I was surprised, just a bit, by this.
He said, "We have George to thank for that."
There was a story there and I asked to hear it. He tapped his watch indicating that break was over and I had to return to the podium. I went back to talking, he went back to making notes, but my mind spent all of it's time glancing at the watch wanting to hear about George. When I finished the day was over and I caught him packing up and asked him to tell me the story, he said that he'd tell me the next day as he had to get back and give his wife a breather. She was going shopping and meeting with some friends. He didn't want to keep her waiting.
So he kept me waiting.
And I am keeping you waiting.
That's how things work in the real world.
The next morning he arrived just before the day started. His wife and baby Owen were in tow and everyone fussed around mother and child. Then it was time to start. She and Owen headed out for the day and hubby took his seat amongst the others. Finally, at first break, we were able to talk again.
Dad told me that he worked in a factory that made paint. I told him that until he said it I kind of thought that paint cans were picked off trees. I had no idea that someone actually made paint. Then he began the story. George was a guy with Down Syndrome who had a job placement at the paint factory. He worked with the janitorial team and was scheduled to be there only for a couple of weeks. But he took to the job, the men took to him, and he was hired. Full time at full pay. He was just part of the crew. This was, he said, several years before his wife would become pregnant with Owen.
He'd forgotten that George had Down Syndrome for the most part as the years past George was just George. Part of the janitorial crew, part of his shift rotation, part of the team. Big deal he had Down Syndrome, bigger deal was that he got along famously with everyone and had a wicked sense of humour. He knew little about George's private life and didn't much think about it either. When his wife became pregnant and he announced it to the team, George gave him a hug and told him he'd be a great Dad. He stopped here, looked away from me and blinked tears away. Back in control he told me that he was grateful for this because he wanted to be a Dad but was afraid of all the responsibility, the reassurance was just what he needed.
That summer, the summer of his wife's pregnancy, at the annual company picnic and baseball tournament, George suprised everyone by showing up with his girlfriend. He could tell she had a disability but he didn't have Down Syndrome like George. About midway through the picnic one of the bosses called everyone to order and said that George had an announcement to make. George came to the front with his girlfriend and announced that they were engaged to be married. The place cheered George who grinned back at everyone.
It would be almost one week later that he and his wife would get the news that the baby had an extra chromosone, Down Syndrome. The doctor, after delivering the news said, "I think it's best that we schedule the abortion now."
His wife, reeling from the shock of the news said, "Wait."
She turned to him and said, "What if this is George? He's got a job, he's engaged. What if we are giving up George."
He turned to the doctor and said, "Thanks for the information, but we're having this baby."
The doctor did not look kindly on their decision but saw that they were resolute.
So Owen George was borne.
They gave their baby that middle name to remind them of all the possibilities they wanted for Owen as he grew, but also because one day Owen would ask where his names came from. And they had a story to tell him.
About George.
Though most of the parents came in couples, my audience was primarily singles. Many of the dads decided that goofing off in the city was a much more interesting way to spend time than sitting listening to someone talk about their child's disability. None of the women seemed to mind, some even seemed relieved. There were a few men there, all but one sat dutifully by their wives sides. This guy just sat on his own, listening and taking notes. He asked a couple of questions and there was something about him that really impressed me.
At one of the long breaks he sat down beside me and we chatted. It turned out that his wife was with him but was staying back at the hotel keeping an eye on their son. They felt that he was too young to be left in day care and they didn't want to miss the opportunity to get away and to learn things to help them parent. "Before you even think it," he said defensively, "I'm here because I'm better at taking notes and keeping information arranged than my wife is. I take just as much care of our son."
We chatted about their little boy, Owen, and he was bubbly with love for the kid. Something was really odd though. He seemed to have had no difficulty adjusting to a child with Down Syndrome. Most parents get to the point of total love and acceptance of their child, but for many there's a bit of a journey through grief and a time of adjustment. I felt none of that from this man. I didn't know how to ask, but I wanted to know, "Excuse me for asking, and there is no easy way to do this, did you have any difficulty at all with learning your child had Down Syndrome."
"No, not at all," he said and his smile widened.
"None?"
"None."
I told him that I was surprised, just a bit, by this.
He said, "We have George to thank for that."
There was a story there and I asked to hear it. He tapped his watch indicating that break was over and I had to return to the podium. I went back to talking, he went back to making notes, but my mind spent all of it's time glancing at the watch wanting to hear about George. When I finished the day was over and I caught him packing up and asked him to tell me the story, he said that he'd tell me the next day as he had to get back and give his wife a breather. She was going shopping and meeting with some friends. He didn't want to keep her waiting.
So he kept me waiting.
And I am keeping you waiting.
That's how things work in the real world.
The next morning he arrived just before the day started. His wife and baby Owen were in tow and everyone fussed around mother and child. Then it was time to start. She and Owen headed out for the day and hubby took his seat amongst the others. Finally, at first break, we were able to talk again.
Dad told me that he worked in a factory that made paint. I told him that until he said it I kind of thought that paint cans were picked off trees. I had no idea that someone actually made paint. Then he began the story. George was a guy with Down Syndrome who had a job placement at the paint factory. He worked with the janitorial team and was scheduled to be there only for a couple of weeks. But he took to the job, the men took to him, and he was hired. Full time at full pay. He was just part of the crew. This was, he said, several years before his wife would become pregnant with Owen.
He'd forgotten that George had Down Syndrome for the most part as the years past George was just George. Part of the janitorial crew, part of his shift rotation, part of the team. Big deal he had Down Syndrome, bigger deal was that he got along famously with everyone and had a wicked sense of humour. He knew little about George's private life and didn't much think about it either. When his wife became pregnant and he announced it to the team, George gave him a hug and told him he'd be a great Dad. He stopped here, looked away from me and blinked tears away. Back in control he told me that he was grateful for this because he wanted to be a Dad but was afraid of all the responsibility, the reassurance was just what he needed.
That summer, the summer of his wife's pregnancy, at the annual company picnic and baseball tournament, George suprised everyone by showing up with his girlfriend. He could tell she had a disability but he didn't have Down Syndrome like George. About midway through the picnic one of the bosses called everyone to order and said that George had an announcement to make. George came to the front with his girlfriend and announced that they were engaged to be married. The place cheered George who grinned back at everyone.
It would be almost one week later that he and his wife would get the news that the baby had an extra chromosone, Down Syndrome. The doctor, after delivering the news said, "I think it's best that we schedule the abortion now."
His wife, reeling from the shock of the news said, "Wait."
She turned to him and said, "What if this is George? He's got a job, he's engaged. What if we are giving up George."
He turned to the doctor and said, "Thanks for the information, but we're having this baby."
The doctor did not look kindly on their decision but saw that they were resolute.
So Owen George was borne.
They gave their baby that middle name to remind them of all the possibilities they wanted for Owen as he grew, but also because one day Owen would ask where his names came from. And they had a story to tell him.
About George.
Saturday, August 18, 2007
Wave
You know how Volkswagon Beetle drivers wave at each other when they pass each other on the road? And bikers do that 'way cool' hand pointing down move when they catch site of one another on the highway? I'm still relatively new to the disability thing so I get that same kind of thrill of recognition when I see another wheelie in a mall, at the movies or just generally out and about. I think we should have some kind of movement of recognition too, it'd be fun.
When we went to see 'Becoming Jane' at the theatre in Framingham, there was a woman with a disability in a wheelchair taking tickets as we went in. She was the guardian of a world of fantasy and popcorn, now there is a cool job. There was a small line up as she took just a wee bit longer than a typical ticket taker. Every movement was studied and thorough. She took the tickets from Joe, ripped them carefully, handed half back and deposited the other half in the ticket holder thingy and told us in a voice slightly infused with cerebral palsy that we were in cinema 8 to our left.
As I drove around her I said, "It's nice to see someone on my team working here."
I could tell she wanted to say something to me, but she wasn't quick to speak and instead she said, "Cinema 9, to your right" to the person behind us.
The movie was bright and fun, the time flew by and Joe and I were buzzing about the film on the way out. We stopped for a pee, being over 50 and facing a twenty minute drive back to the hotel.
On our way out, I noticed that the ticket taker wasn't at her post and in fact no where to be seen. That is untl we were leaving the theatre and we spotted her off to the side of the front entrance having a smoke. Our car was parked off that way so we passed in front of her. She waved us over. She put her cigarette out and looked up at us and smiled.
"I've been benched," she said and it struck her really funny and she rollicked in her chair as she laughed.
We laughed too and continued on our way.
We've got to work at that wave thing.
When we went to see 'Becoming Jane' at the theatre in Framingham, there was a woman with a disability in a wheelchair taking tickets as we went in. She was the guardian of a world of fantasy and popcorn, now there is a cool job. There was a small line up as she took just a wee bit longer than a typical ticket taker. Every movement was studied and thorough. She took the tickets from Joe, ripped them carefully, handed half back and deposited the other half in the ticket holder thingy and told us in a voice slightly infused with cerebral palsy that we were in cinema 8 to our left.
As I drove around her I said, "It's nice to see someone on my team working here."
I could tell she wanted to say something to me, but she wasn't quick to speak and instead she said, "Cinema 9, to your right" to the person behind us.
The movie was bright and fun, the time flew by and Joe and I were buzzing about the film on the way out. We stopped for a pee, being over 50 and facing a twenty minute drive back to the hotel.
On our way out, I noticed that the ticket taker wasn't at her post and in fact no where to be seen. That is untl we were leaving the theatre and we spotted her off to the side of the front entrance having a smoke. Our car was parked off that way so we passed in front of her. She waved us over. She put her cigarette out and looked up at us and smiled.
"I've been benched," she said and it struck her really funny and she rollicked in her chair as she laughed.
We laughed too and continued on our way.
We've got to work at that wave thing.
Friday, August 17, 2007
Paperwork
I have spent a lifetime asking for things that those in my care need. I've done everything from a quiet word in the ear to ear shattering full frontal attacks - and every shade in between. I advocate with no embarrassment, I advocate from the stance that my job has many facets and creating healthy places, accessing appropriate serices and the right tools is one amongst them. Truth to tell, sometimes under all my bluster, I kinda enjoyed the fight.
But then is not now.
There is an office that I consult to on a really regular basis. Many of the staff there do not know of my new status as a disabled person because the disabled parking is right out side their door, and the office I consult in is right inside the door. Further the chair I sit in is tall and getting in and out is easy. So I always arrive early, Joe slowly walks me into the building, I hold on to his shoulder or arm for stability and then once down in the chair, I only get up and go to the washroom which is only a few feet from the door. It's been working. I'm not hiding my disability in any way, it's just that if I can do it walking, I will.
But there is a problem.
I noticed it right off. I've been working in that office for years before becoming disabled and I never noticed. The bathrooms have bars but the toilet is one of those that is really short, really close to the ground. Even with the bars, I'm not sure I could get up and off it. I size it up every morning that I arrive and every morning I see that it hadn't grown, magically, over night. So we worked out a weird strategy. If I had a need to toilet, ok, poo, I'd give Joe a call. He would be working about 20 minutes away, he'd come and pick me up and whisk me over to a fast food joint where I could use their john. I never had to use this fail safe strategy but it was nice to have it.
Joe said, "Why don't you just ask for a tall toilet?"
I said, "I can't do that."
We'd had that conversation several times. Then Joe through in a twist.
"If you had a client who had to go to that building and couldn't go to the washroom because they've got kindergarten toilets, what would you do, I was tired and distracted by other thoughts so I didn't immediately see where he was going. "I'd sit them down and talk to them about making the place accessible."
"Well, you've got a disabled client who needs a tall toilet, so ask."
I've known the director for years. The idea of talking about my need to poo in her work establishment was oddly difficult. But I did. I pulled her into a meeting room before the day started and told her what I needed. Her eyes widened. "Our toilets aren't accessible? We've got bars up." I explained that the bars are good but the toilet is really really low. "Of course we'll make the place accessible for you. No problem." A few seconds later she was out at the front desk talking to the secretary about investigating where to get a tall toilet and investigating how to get it installed.
That was it.
I'm not sure why asking for something - for someone else - is easy.
Asking for me is hard.
The way my disability is progressing, soon I won't really be able to do the walk from car to meeting room, I'd better get better at advocating from ground camp.
I'm going to have to take myself on as a client.
Oh, no, more paperwork.
But then is not now.
There is an office that I consult to on a really regular basis. Many of the staff there do not know of my new status as a disabled person because the disabled parking is right out side their door, and the office I consult in is right inside the door. Further the chair I sit in is tall and getting in and out is easy. So I always arrive early, Joe slowly walks me into the building, I hold on to his shoulder or arm for stability and then once down in the chair, I only get up and go to the washroom which is only a few feet from the door. It's been working. I'm not hiding my disability in any way, it's just that if I can do it walking, I will.
But there is a problem.
I noticed it right off. I've been working in that office for years before becoming disabled and I never noticed. The bathrooms have bars but the toilet is one of those that is really short, really close to the ground. Even with the bars, I'm not sure I could get up and off it. I size it up every morning that I arrive and every morning I see that it hadn't grown, magically, over night. So we worked out a weird strategy. If I had a need to toilet, ok, poo, I'd give Joe a call. He would be working about 20 minutes away, he'd come and pick me up and whisk me over to a fast food joint where I could use their john. I never had to use this fail safe strategy but it was nice to have it.
Joe said, "Why don't you just ask for a tall toilet?"
I said, "I can't do that."
We'd had that conversation several times. Then Joe through in a twist.
"If you had a client who had to go to that building and couldn't go to the washroom because they've got kindergarten toilets, what would you do, I was tired and distracted by other thoughts so I didn't immediately see where he was going. "I'd sit them down and talk to them about making the place accessible."
"Well, you've got a disabled client who needs a tall toilet, so ask."
I've known the director for years. The idea of talking about my need to poo in her work establishment was oddly difficult. But I did. I pulled her into a meeting room before the day started and told her what I needed. Her eyes widened. "Our toilets aren't accessible? We've got bars up." I explained that the bars are good but the toilet is really really low. "Of course we'll make the place accessible for you. No problem." A few seconds later she was out at the front desk talking to the secretary about investigating where to get a tall toilet and investigating how to get it installed.
That was it.
I'm not sure why asking for something - for someone else - is easy.
Asking for me is hard.
The way my disability is progressing, soon I won't really be able to do the walk from car to meeting room, I'd better get better at advocating from ground camp.
I'm going to have to take myself on as a client.
Oh, no, more paperwork.
Thursday, August 16, 2007
An Unimaginable Life
"It's a good programme they got here." She is answering my question about how she is doing in her new placement. She lived on the streets for years and finally, when found that she had a disability and qualified for care, has a room of her own in a place that provides care. The file says that she has two children that she hasn't seen for years, she's had several boyfriends and a dark past.
As we talk she quietly answers my question meeting my gaze only seldomly. Years and years of hurt pour out of her. Rape, if not a daily occurance, was her only experience of sex. Two children of rape. Boyfriends who rented her out for money. A body that wasn't her own. A need to survive the only thing that kept her going.
Yet she seems so whole, so completely present as we talk. She describes her past with no need for pity, no desire for compassion, she's just answering questions. She smiles rarely but when she does, she's beautiful. She only has one goal, she wants to see pictures of her children, not to meet them or know them, just to see pictures of them. Check out that they are doing well. She doesn't wish to intrude on their lives, she doesn't wish to be reminded of the brutality that brought them life. Just see them. That's all.
As we talk the room seems as if the silence of the room wraps around the words she speaks. As if the only important thing in the world what she is saying. She wants to be understood, she want us to know that she is a woman of noble character who lived through ignoble circumstances. That she is here against all odds.
"What makes this a good programme?" I ask her.
"They let me be safe," she says not even taking a moment to think of an answer.
That's all she wants. And when she left, that's what we spent our time talking about. How we give her what she needs. Safety.
There is no greater goal for those in care than that they be safe.
There is no greater purpose for agencies that provide service than that they offer safe haven.
There is no greater promise that we make than safety.
All the rest is gravy.
As we talk she quietly answers my question meeting my gaze only seldomly. Years and years of hurt pour out of her. Rape, if not a daily occurance, was her only experience of sex. Two children of rape. Boyfriends who rented her out for money. A body that wasn't her own. A need to survive the only thing that kept her going.
Yet she seems so whole, so completely present as we talk. She describes her past with no need for pity, no desire for compassion, she's just answering questions. She smiles rarely but when she does, she's beautiful. She only has one goal, she wants to see pictures of her children, not to meet them or know them, just to see pictures of them. Check out that they are doing well. She doesn't wish to intrude on their lives, she doesn't wish to be reminded of the brutality that brought them life. Just see them. That's all.
As we talk the room seems as if the silence of the room wraps around the words she speaks. As if the only important thing in the world what she is saying. She wants to be understood, she want us to know that she is a woman of noble character who lived through ignoble circumstances. That she is here against all odds.
"What makes this a good programme?" I ask her.
"They let me be safe," she says not even taking a moment to think of an answer.
That's all she wants. And when she left, that's what we spent our time talking about. How we give her what she needs. Safety.
There is no greater goal for those in care than that they be safe.
There is no greater purpose for agencies that provide service than that they offer safe haven.
There is no greater promise that we make than safety.
All the rest is gravy.
Wednesday, August 15, 2007
Heart Breaker
We arrived at our hotel just outside of Boston and I decided to stay in the car as Joe went in to register. I was immediately glad that I did because as Joe went into the hotel another man came out with a lease attached to a dog that looked just like our wonder-dog Eric. Though Eric has been gone now for several months, I still miss him and it was like a wonderful shock to see this pooch leave the hotel. I spoke to the guy as he passed the car window and he stopped to talk. His dog glanced up at me and I saw intellegence in it's eyes as I was checked out.
Eric was a found dog, an abused dog, who came into our lives and enriched us for 16 years. This dog, I hear was also a foundling. The guy tells me that the dog and he connected while he was a grad student in New York City, he was alone, so was the dog, that was that. I told him a bit about Eric but had to stop as I got myself all choked up. Then his wife came out of the hotel and said hello to me as she figured out, correctly, that we were talking dog.
A little girl peeked out from behind her mother's legs and said distrustfully, "Don't let him take our dog." I smiled down at her and saw that she had Down Syndrome, I told her that I wouldn't take her dog away. "That's good," she said and went over and wrapped her arms around her dog and looked defiantly up at me. I swear the dog smiled.
She was a beautiful girl. I'm bad at guessing ages but she was probably ten or eleven years old. Like her parents she was beautifully dressed and like her mother, she was stunning. She and I talked about dogs and when I told her Eric had died, she teared up and said, "Well, maybe you can have Lucy." I choked up again and thanked her for her kindness but it wouldn't be fair to Lucy to have to get used to new people. She thought, deeply, and said, "Yeah, that's right." I could tell she was relieved.
I turned back to her parents and said, "That little girl is really going to break some hearts one day." I truly didn't mean anything other than she's beautiful inside and out and she will one day be a real catch. But mom swung at me with her words, "And what do you mean by that?" I could tell she was angry.
"Whoa, Whoa," I said and explained that disability was what I was and what I did. I told her that I work with many people with Down Syndrome that were married, had jobs, were adults. I didn't see anything about her little girl that told me that this wasn't possible. She was beautiful, socially skilled, kind, what's not to like, what's not to love.
She stood there frozen for a few minutes, Dad had begun to tear up so he covered it by bending down and petting Lucy. Joe came out of the hotel and stopped. He could tell, he said later, that something had just happened. "I leave you in the car for 15 minutes and you are up to your ass in an emotional mess," he said later.
Mom came back from where ever she retreated. She smiled, said, "Thanks, I just never thought ..." and they were away.
"You OK," I asked to her retreating back.
She turned and said, "I'm not used to strangers talking about my daughter as having possibilities. I'm not used to thinking of her as an adult and being married. This has all just thrown me, I guess."
Dad scooped up Lucy and jogged back and let me pet Lucy through the car window. I thanked him.
When he left, we were both crying.
Eric was a found dog, an abused dog, who came into our lives and enriched us for 16 years. This dog, I hear was also a foundling. The guy tells me that the dog and he connected while he was a grad student in New York City, he was alone, so was the dog, that was that. I told him a bit about Eric but had to stop as I got myself all choked up. Then his wife came out of the hotel and said hello to me as she figured out, correctly, that we were talking dog.
A little girl peeked out from behind her mother's legs and said distrustfully, "Don't let him take our dog." I smiled down at her and saw that she had Down Syndrome, I told her that I wouldn't take her dog away. "That's good," she said and went over and wrapped her arms around her dog and looked defiantly up at me. I swear the dog smiled.
She was a beautiful girl. I'm bad at guessing ages but she was probably ten or eleven years old. Like her parents she was beautifully dressed and like her mother, she was stunning. She and I talked about dogs and when I told her Eric had died, she teared up and said, "Well, maybe you can have Lucy." I choked up again and thanked her for her kindness but it wouldn't be fair to Lucy to have to get used to new people. She thought, deeply, and said, "Yeah, that's right." I could tell she was relieved.
I turned back to her parents and said, "That little girl is really going to break some hearts one day." I truly didn't mean anything other than she's beautiful inside and out and she will one day be a real catch. But mom swung at me with her words, "And what do you mean by that?" I could tell she was angry.
"Whoa, Whoa," I said and explained that disability was what I was and what I did. I told her that I work with many people with Down Syndrome that were married, had jobs, were adults. I didn't see anything about her little girl that told me that this wasn't possible. She was beautiful, socially skilled, kind, what's not to like, what's not to love.
She stood there frozen for a few minutes, Dad had begun to tear up so he covered it by bending down and petting Lucy. Joe came out of the hotel and stopped. He could tell, he said later, that something had just happened. "I leave you in the car for 15 minutes and you are up to your ass in an emotional mess," he said later.
Mom came back from where ever she retreated. She smiled, said, "Thanks, I just never thought ..." and they were away.
"You OK," I asked to her retreating back.
She turned and said, "I'm not used to strangers talking about my daughter as having possibilities. I'm not used to thinking of her as an adult and being married. This has all just thrown me, I guess."
Dad scooped up Lucy and jogged back and let me pet Lucy through the car window. I thanked him.
When he left, we were both crying.
Tuesday, August 14, 2007
Yellow Marker
The report was good. Everybody said that he was doing well. He'd set goals, acheived them and moved forward. I looked forward to meeting him, I hadn't seen him for some time, a few years at least, and it was nice to be going into a meeting with him that bore only good news.
He'd aged. So had I. We chatted a bit about knowing each other for years and then it was down to work. I'd told him that staff were thrilled with his progress. He'd become more mature, more responsible and more capable. He was relying on internal controls rather than external controls. We reviewed the goals he'd acheived and it was nice being able to remind him of where he was the last time we spoke, and then to compare that to where he was now. I could tell he was proud of himself.
I asked him to give me an example that really showed he was doing well. This is one of my favourite clinical questions. It tells me what he thinks is important, what he's proud of, where he sees improvement. He thought for a while. As he did my mind, as it always does, leapt in to fill the silence, I tick, tick, ticked, my way through his list of achievements while waiting for him to sort out his answer.
"There's no more yellow marker."
Forgive me but I didn't have any idea what that meant. I looked at him confused, I didn't even say anything, I just looked like I didn't get it.
"You know, yellow marker. There's no more yellow marker."
I said it, "I have no idea what you are talking about."
"You don't know about the yellow marker?"
I shook my head.
"The staff write notes and if I've been bad they use a yellow marker over what they wrote. There's no more yellow marker."
"Oh." I suppose that's good.
But suddenly I got this creepy feeling that right then, right at that moment, a great big pen was writing in the Book of Life upstairs, taking notation about how I lived my life, handled my temper and my tendancies, how I was with others, how I behaved.
I picture a sea of yellow marker highlighting everything I've ever done wrong all over those pages.
A resolution.
No more yellow marker.
He'd aged. So had I. We chatted a bit about knowing each other for years and then it was down to work. I'd told him that staff were thrilled with his progress. He'd become more mature, more responsible and more capable. He was relying on internal controls rather than external controls. We reviewed the goals he'd acheived and it was nice being able to remind him of where he was the last time we spoke, and then to compare that to where he was now. I could tell he was proud of himself.
I asked him to give me an example that really showed he was doing well. This is one of my favourite clinical questions. It tells me what he thinks is important, what he's proud of, where he sees improvement. He thought for a while. As he did my mind, as it always does, leapt in to fill the silence, I tick, tick, ticked, my way through his list of achievements while waiting for him to sort out his answer.
"There's no more yellow marker."
Forgive me but I didn't have any idea what that meant. I looked at him confused, I didn't even say anything, I just looked like I didn't get it.
"You know, yellow marker. There's no more yellow marker."
I said it, "I have no idea what you are talking about."
"You don't know about the yellow marker?"
I shook my head.
"The staff write notes and if I've been bad they use a yellow marker over what they wrote. There's no more yellow marker."
"Oh." I suppose that's good.
But suddenly I got this creepy feeling that right then, right at that moment, a great big pen was writing in the Book of Life upstairs, taking notation about how I lived my life, handled my temper and my tendancies, how I was with others, how I behaved.
I picture a sea of yellow marker highlighting everything I've ever done wrong all over those pages.
A resolution.
No more yellow marker.
Monday, August 13, 2007
Vacation
It should have been a tough weekend. Full of bitterness and anger.
But it wasn't.
A few weeks ago we planned a four day holiday. We were going to leave on Saturday morning, bright and early, for Montreal for an overnight. Then on Sunday we'd visit Phil on our way down to Boston were we'd have a couple of days off before working there on Wednesday and Thursday. Not much of a vacation but it was all we were going to get this summer.
Then on Friday last I was doing a series of consultations and when I looked at their calander I saw they had me in again on Monday. I checked that against my own calander and found that we'd made a booking error. I couldn't be on vacation because I was booked to work. I don't know how we did it, how we made that mistake, but we did. I called Joe quickly and told him to cancel the hotels, the cars, the visits with friends.
It was impossible to cancel the work day because the therapist would be on maternity leave by the time I got back from Boston. It was now or never. There is no way I would let our mistake get in the way. So, it was cancelled. I had tears in my eyes when I made the call, but I knew it was the right call.
So, leaving work on Friday knowing that our weekend would not be as we planned was not a happy event. But we talked about what to do and both of us were feeling cheated - we take few vacations and something always seems to come up. On Saturday morning we were chatting about cabbage rolls. After all these years together you've got to talk about something and we were talking about cabbage rolls. The decision was made, we'd make a wack of cabbage rolls, some to eat now and the rest to freeze for later.
Saturday we bought the stuff and made the sauce. Sunday we made the stuffing and boiled the cabbage and rolled the rolls. It was fun. And satisfying. And oddly restful. When done we'd made 29 huge cabbage rolls and had the bulk of them in the freezer parceled into foil pans ready for reheating.
It was my first really big cooking adventure using the house wheelchair and I found my self quite agile despite sitting down. We worked as a real team together, each doing our parts contributing one to the other. We put a lot of work into those cabbage rolls.
And yet.
Yet.
I feel rested.
Like I'd vacationed. Had some real time off.
I'm OK with going to work this morning. I don't mind at all that we didn't busy up the days of with going away and staying in hotels and navigating an often inaccessible landscape. I'm OK with our vacation, right in our own home.
But it wasn't.
A few weeks ago we planned a four day holiday. We were going to leave on Saturday morning, bright and early, for Montreal for an overnight. Then on Sunday we'd visit Phil on our way down to Boston were we'd have a couple of days off before working there on Wednesday and Thursday. Not much of a vacation but it was all we were going to get this summer.
Then on Friday last I was doing a series of consultations and when I looked at their calander I saw they had me in again on Monday. I checked that against my own calander and found that we'd made a booking error. I couldn't be on vacation because I was booked to work. I don't know how we did it, how we made that mistake, but we did. I called Joe quickly and told him to cancel the hotels, the cars, the visits with friends.
It was impossible to cancel the work day because the therapist would be on maternity leave by the time I got back from Boston. It was now or never. There is no way I would let our mistake get in the way. So, it was cancelled. I had tears in my eyes when I made the call, but I knew it was the right call.
So, leaving work on Friday knowing that our weekend would not be as we planned was not a happy event. But we talked about what to do and both of us were feeling cheated - we take few vacations and something always seems to come up. On Saturday morning we were chatting about cabbage rolls. After all these years together you've got to talk about something and we were talking about cabbage rolls. The decision was made, we'd make a wack of cabbage rolls, some to eat now and the rest to freeze for later.
Saturday we bought the stuff and made the sauce. Sunday we made the stuffing and boiled the cabbage and rolled the rolls. It was fun. And satisfying. And oddly restful. When done we'd made 29 huge cabbage rolls and had the bulk of them in the freezer parceled into foil pans ready for reheating.
It was my first really big cooking adventure using the house wheelchair and I found my self quite agile despite sitting down. We worked as a real team together, each doing our parts contributing one to the other. We put a lot of work into those cabbage rolls.
And yet.
Yet.
I feel rested.
Like I'd vacationed. Had some real time off.
I'm OK with going to work this morning. I don't mind at all that we didn't busy up the days of with going away and staying in hotels and navigating an often inaccessible landscape. I'm OK with our vacation, right in our own home.
Sunday, August 12, 2007
Roll Model
Years and years and years ago, back when I was a mere slip of a boy, I ran a summer camp for kids with physical disabilities. I got the job because of my experience working as a classroom assistant with teens with similar disabilities at a school in Toronto. I took the job up with excitement and had lots of ideas for what we could do together that summer. I had the option of hiring the last few staff to work on site, most of the staff were summer students that were hired around the same time I was.
My first hire was Gerry.
She was a young woman with cerebral palsy that had been a student in my classroom. An impressive woman, I knew that she would do a good job and would be able to relate to the campers in ways that none of the rest of us could.
She was thrilled to get the job and the first thing that she wanted to do was have a group of those who had difficulty communicating. Gerry had a thick cerebral palsy accent that was only difficult to understand upon first meeting her. After a very little bit of time, she was clear as a bell. Gerry said that when she was at camp she felt more of a kinship with others who's speech left them behind. She wanted a group wherein everyone was equal, none was left behind. Good idea, she set about setting it up.
I never told Gerry that hiring her had caused me no end of difficulty. My boss, who was initially really pleased that I took the job, was now furious. She didn't want someone with a disability on staff. She even made a deal about the fact that Gerry would need assistance with toiletting. I pointed out that we had that support available for campers and before I could continue I was told that the assistants should have to provide that service for 'staff'. I tried to make the point that Gerry was a great role model. Imagine the campers seeing someone else with a disability on staff! It was a testiment to the fact that they could work, have a future, have a life and further - have power.
They didn't fire me. Or her. But I knew that the blush had gone off the rose and it was a harder summer for me than it need to have been. A week or so before the end of camp, I told Gerry that she'd done a good job and that I'd hired her partly to be a role model. She was mightily offended. She came to work the next day with the words 'Roll Model' on the back of her chair. We scraped about it for a while and then we both gave up, neither convincing the other. I still thought she was a role model, she still thought that she was a camp counsellor, nothing more.
Perhaps I am old school. I think it's important to have role models. I was excited to learn about Gretchen Josephson, the poet with Down Syndrome, Hikari Oe, the composer with significant intellectual disabilites, Ramond Hu, the artist with Down Syndrome, Virginia Hall the spy with a physical disability - the list is endless.
No, of course I don't think that all people with disabilities need to be inspirational, but it's wonderful that there are some who deserve to be lauded. Every minority has those it honours, why not us, why not ours?
A hero is more than a sandwich.
My first hire was Gerry.
She was a young woman with cerebral palsy that had been a student in my classroom. An impressive woman, I knew that she would do a good job and would be able to relate to the campers in ways that none of the rest of us could.
She was thrilled to get the job and the first thing that she wanted to do was have a group of those who had difficulty communicating. Gerry had a thick cerebral palsy accent that was only difficult to understand upon first meeting her. After a very little bit of time, she was clear as a bell. Gerry said that when she was at camp she felt more of a kinship with others who's speech left them behind. She wanted a group wherein everyone was equal, none was left behind. Good idea, she set about setting it up.
I never told Gerry that hiring her had caused me no end of difficulty. My boss, who was initially really pleased that I took the job, was now furious. She didn't want someone with a disability on staff. She even made a deal about the fact that Gerry would need assistance with toiletting. I pointed out that we had that support available for campers and before I could continue I was told that the assistants should have to provide that service for 'staff'. I tried to make the point that Gerry was a great role model. Imagine the campers seeing someone else with a disability on staff! It was a testiment to the fact that they could work, have a future, have a life and further - have power.
They didn't fire me. Or her. But I knew that the blush had gone off the rose and it was a harder summer for me than it need to have been. A week or so before the end of camp, I told Gerry that she'd done a good job and that I'd hired her partly to be a role model. She was mightily offended. She came to work the next day with the words 'Roll Model' on the back of her chair. We scraped about it for a while and then we both gave up, neither convincing the other. I still thought she was a role model, she still thought that she was a camp counsellor, nothing more.
Perhaps I am old school. I think it's important to have role models. I was excited to learn about Gretchen Josephson, the poet with Down Syndrome, Hikari Oe, the composer with significant intellectual disabilites, Ramond Hu, the artist with Down Syndrome, Virginia Hall the spy with a physical disability - the list is endless.
No, of course I don't think that all people with disabilities need to be inspirational, but it's wonderful that there are some who deserve to be lauded. Every minority has those it honours, why not us, why not ours?
A hero is more than a sandwich.
Saturday, August 11, 2007
Bus Girl
She is sitting in front of me. Sad. Defiant. Thinking that she is so alone in the world. Thinking that I could have nothing to offer her. How could I? She has Down Syndrome, she's been dumped by her boyfriend, her world is at end. I'm just some guy who doesn't understand. She spits out the words 'social worker' like they were distasteful in her mouth. I don't know her history with helping other, but that's not what worries me now. The referral said that there was fear of suicide. That the break up with her boyfriend had been sudden and he'd been a bit unkind when it happened.
After a half an hour, I couldn't get her to open up even slightly. She wound down into her world, a world that excluded me, her family, her staff, anyone who wasn't Down Syndrome was out. We could not get it. We would never understand what it was like to be her, to lose something so valuable. She, like many with diabilities, saw the world as full of haves (us) and have nots (her). And that was it. I offered her another coffee, she accepted, and I left the office.
I could have called for coffee but I wanted to be out of there. Her depression had sucked the air out of the room and there was nothing left, no room left, for anything else. She was dragging me down in the current of her self hatred and self pity.
Pouring her coffee, I got an idea. I quickly went to a phone and called Joe, I asked him to get me a book out of my library and bring it to the office as fast as possible. While on the phone he picked it off a shelf on my desk where it has sat since I bought it. Close at hand to bring down and flip through.
He was at the office twenty minutes later and the secretary knocked and handed the book in. I told the young woman that I wanted her to see the book. She snorted, actually snorted, now she knew I was dumb as a post. I flipped the book through the the last page and said look at this. She didn't look up. A couple of prompts later and she looked up with that attitutde that if I don't do what he says, he won't stop asking.
Her eyes hit the picture and froze. Time stoppped.
"Who is that in the picture?"
"You really want to know?"
"Yes," she sits up staight, interested.
I take the book from her and pick out a couple of lines "Gretchen L. Josephson was born with Down Syndrome ..." The book was almost ripped from my hands. She flipped back to the picture and looked at it for a really long time. She then looked up and asked, "She wrote this book?"
"Yes," that had her floored, but that's not why I brought the book, "The book is called "Bus Girl" in it she writes poety and some of the poems are about the break up with her boyfriend after an impassioned love affair. I thought you'd might like to hear some of the poems."
She simply nodded, stunned that such a book might exist. I began to flip through the book to the section under Love, for disappointment and despair and she took the book from my hands again, this time more gently. She looked at the picture again. Her fingers traced the outline of Gretchen's face and then she handed it back.
I read first, The Bedroom Blues
When I wake up in the morning
I still have tears
running down my face.
I rub my eyes
I stumble
My bones creak
When I see the empty bed
And the love that was there
I sure do have
The bedroom blues.
This is followed by a few other poems. She is crying now. The good kind of crying. The crying because it hurts. The crying that gets the hurt out. Then I put the book down and wait. Now we really talk. Her distrust of me has gone, no I don't have Down Syndrome and don't know what it's like for her but I had brought her a voice that she could hear. She asked if she could come back and we could read some of the other poems together. I told her that Gretchen wrote poems about being happy too, that the pain didn't stay forever that she grew out of the pain and into a life without her boyfriend. She nodded, "I'd like to hear the happy poems too."
When she left I picked up "Bus Gir: Poems by Gretchen Josephson" flipped to the back of the book and gave the picture of Gretchen a little kiss. She managed, like artists do, to reach through the pages of her book and help someone else.
It was a good day today.
Reference
Josephson, Gretchen (1979) Bus Girl: Poems by Gretchen Josephson, Brookline Books: Cambridge MA
After a half an hour, I couldn't get her to open up even slightly. She wound down into her world, a world that excluded me, her family, her staff, anyone who wasn't Down Syndrome was out. We could not get it. We would never understand what it was like to be her, to lose something so valuable. She, like many with diabilities, saw the world as full of haves (us) and have nots (her). And that was it. I offered her another coffee, she accepted, and I left the office.
I could have called for coffee but I wanted to be out of there. Her depression had sucked the air out of the room and there was nothing left, no room left, for anything else. She was dragging me down in the current of her self hatred and self pity.
Pouring her coffee, I got an idea. I quickly went to a phone and called Joe, I asked him to get me a book out of my library and bring it to the office as fast as possible. While on the phone he picked it off a shelf on my desk where it has sat since I bought it. Close at hand to bring down and flip through.
He was at the office twenty minutes later and the secretary knocked and handed the book in. I told the young woman that I wanted her to see the book. She snorted, actually snorted, now she knew I was dumb as a post. I flipped the book through the the last page and said look at this. She didn't look up. A couple of prompts later and she looked up with that attitutde that if I don't do what he says, he won't stop asking.
Her eyes hit the picture and froze. Time stoppped.
"Who is that in the picture?"
"You really want to know?"
"Yes," she sits up staight, interested.
I take the book from her and pick out a couple of lines "Gretchen L. Josephson was born with Down Syndrome ..." The book was almost ripped from my hands. She flipped back to the picture and looked at it for a really long time. She then looked up and asked, "She wrote this book?"
"Yes," that had her floored, but that's not why I brought the book, "The book is called "Bus Girl" in it she writes poety and some of the poems are about the break up with her boyfriend after an impassioned love affair. I thought you'd might like to hear some of the poems."
She simply nodded, stunned that such a book might exist. I began to flip through the book to the section under Love, for disappointment and despair and she took the book from my hands again, this time more gently. She looked at the picture again. Her fingers traced the outline of Gretchen's face and then she handed it back.
I read first, The Bedroom Blues
When I wake up in the morning
I still have tears
running down my face.
I rub my eyes
I stumble
My bones creak
When I see the empty bed
And the love that was there
I sure do have
The bedroom blues.
This is followed by a few other poems. She is crying now. The good kind of crying. The crying because it hurts. The crying that gets the hurt out. Then I put the book down and wait. Now we really talk. Her distrust of me has gone, no I don't have Down Syndrome and don't know what it's like for her but I had brought her a voice that she could hear. She asked if she could come back and we could read some of the other poems together. I told her that Gretchen wrote poems about being happy too, that the pain didn't stay forever that she grew out of the pain and into a life without her boyfriend. She nodded, "I'd like to hear the happy poems too."
When she left I picked up "Bus Gir: Poems by Gretchen Josephson" flipped to the back of the book and gave the picture of Gretchen a little kiss. She managed, like artists do, to reach through the pages of her book and help someone else.
It was a good day today.
Reference
Josephson, Gretchen (1979) Bus Girl: Poems by Gretchen Josephson, Brookline Books: Cambridge MA
Friday, August 10, 2007
Mom Picked the Movie
"Shhhhh ... listen." One of my friends was sitting next to me while the others were out getting popcorn and pop. We'd arrived about 10 minutes early for the movie and were getting settled. We'd come to see a kids movie, "Underdog", because we all discovered that we'd been fans of the cartoon series when we were kids. We expected little from the film except to be reminded of youth. When we got there, we weren't just reminded of youth we were surrounded by it. I was engrossed in doing the premovie quiz they had up on the screen and had just guessed an answer when my friend said, "Shhhhh ... listen."
Behind us a couple of rows were two small boys with their mother. We'd seen them come in and both boys rushed behind their mothers looking very much like puppies who'd just learned to walk. The boys looked to be separated in age by a couple of years with the oldest being around 6. They were in deep conversation with each other.
"What's wrong with him?" said little brother.
"Who?" said older brother.
"Him" said little brother, they were behind me but I could imagine him pointing at me.
"There's nothing wrong with him." said older brother surprising the hell out of me.
"But he's not sitting in the chairs, he's got that one with wheels." said little brother.
"There's a kid in my class at school who is in a wheelchair." said older brother as if that was explanation enough.
"What's wrong with him?" said little brother who had difficulty shifting from this question.
"Nothing, he just can't walk." said older brother.
"Really?" said little brother.
"Yeah, he's the same but just can't walk." said older brother.
"Oh." said little brother.
"That's why they make wheelchairs." older brother continued pleased to be a fount of wisdom for his kid brother.
"Who's Underdog?" asked little brother moving on now.
"I don't know mom picked the movie." said little brother. Then they were off onto how dumb mom was.
That, my friends, is what integration does, it allows little boys to grow up knowing that different can be the same, and the same can be different. He knows this at 6.
The world has yet to catch up to him.
Behind us a couple of rows were two small boys with their mother. We'd seen them come in and both boys rushed behind their mothers looking very much like puppies who'd just learned to walk. The boys looked to be separated in age by a couple of years with the oldest being around 6. They were in deep conversation with each other.
"What's wrong with him?" said little brother.
"Who?" said older brother.
"Him" said little brother, they were behind me but I could imagine him pointing at me.
"There's nothing wrong with him." said older brother surprising the hell out of me.
"But he's not sitting in the chairs, he's got that one with wheels." said little brother.
"There's a kid in my class at school who is in a wheelchair." said older brother as if that was explanation enough.
"What's wrong with him?" said little brother who had difficulty shifting from this question.
"Nothing, he just can't walk." said older brother.
"Really?" said little brother.
"Yeah, he's the same but just can't walk." said older brother.
"Oh." said little brother.
"That's why they make wheelchairs." older brother continued pleased to be a fount of wisdom for his kid brother.
"Who's Underdog?" asked little brother moving on now.
"I don't know mom picked the movie." said little brother. Then they were off onto how dumb mom was.
That, my friends, is what integration does, it allows little boys to grow up knowing that different can be the same, and the same can be different. He knows this at 6.
The world has yet to catch up to him.
Thursday, August 09, 2007
If I had ...
I love my desk. It's exactly the way I want it. Stuff jumbled all over the place. Books of fiction mingled with nonfiction mingled with books I've written. A huge pile of papers that promises to fall over but somehow doesn't. A clock in the shape of a jesters cap. A calander from Avon. My trusty pocket dictionary that has a worn cover and pristine pages because I'm too lazy to use it. It is, in effect, a mess.
If I had a staff, they'd make me clean it up.
I'm not shaving today. I've got a meeting but it's with a team member, not an outsider, so it's ok to be a little shoddy today. I get tired of shaving. My face needs a rest. Besides it makes it feel like a holiday, even when it isn't. So when I get out of the shower, I'm done. Ready to face the world with stubble, my little bit of defiance.
If I had a staff, they'd shave me.
It's been too hot to wear my housecoat so I'm sitting here writing this in my favourite shirt, a huge old thing with a stain in the front, a rip in the back and a breastpocket almost ripped off. It's a cool shirt. I've had it for years, if it could talk, I'd have to pay it to shut up. It was, once, a nice kind of green, but now it's the colour of bread mold. Great shirt.
If I had a staff, they'd throw it out.
A group of us are going to the movies after work today. It's a great way to keep cool, and besides, I like the movies. Part of the movie experience is a bucket of popcorn covered in buttery tasting edible oil product. Yeah, I've read the reports about how a bucket of popcorn has enough calories to feed a third world country for two months, but I don't care. Movies, popcorn. Popcorn, movies.
If I had a staff, they'd make me go on a diet.
We don't have much as an adult. When I was a kid I thought adulthood was going to be busting full of freedom. It's not. It's work. It's paying bills. It's worrying about having money to pay bills. It's wanting what you can't have. It's hurting others by accident and sometimes being hurt on purpose. It's tough. It's nice to have wee bits of freedom. Things that are quirks to others but incredibly necessary to the soul. Things that make me different from everyone else. Things that let me know that in my little corner of the world, there's room for me.
If I had a staff, I'd hope they'd get that.
If I had a staff, they'd make me clean it up.
I'm not shaving today. I've got a meeting but it's with a team member, not an outsider, so it's ok to be a little shoddy today. I get tired of shaving. My face needs a rest. Besides it makes it feel like a holiday, even when it isn't. So when I get out of the shower, I'm done. Ready to face the world with stubble, my little bit of defiance.
If I had a staff, they'd shave me.
It's been too hot to wear my housecoat so I'm sitting here writing this in my favourite shirt, a huge old thing with a stain in the front, a rip in the back and a breastpocket almost ripped off. It's a cool shirt. I've had it for years, if it could talk, I'd have to pay it to shut up. It was, once, a nice kind of green, but now it's the colour of bread mold. Great shirt.
If I had a staff, they'd throw it out.
A group of us are going to the movies after work today. It's a great way to keep cool, and besides, I like the movies. Part of the movie experience is a bucket of popcorn covered in buttery tasting edible oil product. Yeah, I've read the reports about how a bucket of popcorn has enough calories to feed a third world country for two months, but I don't care. Movies, popcorn. Popcorn, movies.
If I had a staff, they'd make me go on a diet.
We don't have much as an adult. When I was a kid I thought adulthood was going to be busting full of freedom. It's not. It's work. It's paying bills. It's worrying about having money to pay bills. It's wanting what you can't have. It's hurting others by accident and sometimes being hurt on purpose. It's tough. It's nice to have wee bits of freedom. Things that are quirks to others but incredibly necessary to the soul. Things that make me different from everyone else. Things that let me know that in my little corner of the world, there's room for me.
If I had a staff, I'd hope they'd get that.
Wednesday, August 08, 2007
Lunch
We'd gone out for lunch in Collingwood. As Susan and I had an appointment up there and as I knew I would need Joe's assistance with the wheelchair and with getting in and out of the building, he drove up with us and we all had lunch before heading to the meeting. We were seated at a table for four in a popular restaurante that filled with the lunch trade. Collingwood has lots to offer for summer visitors and it wasn't hard to pick out the families on summer vactations.
The table closest to us had a family of 5. Dad sat at the head of the table, the two young boys sat with their backs to us and the youngest child, a girl, sat beside her Mom on the other side of the table, facing us. I noticed them only briefly when they entered the restaurant as did Susan. We were doing an intake for the Sexuality Clinic so we are always aware of who's around so that we can govern our conversations appropriately. We sometimes forget that words we use on a day to day basis can be shocking or upsetting to those who hear only snippets of conversations. Surrounded by families with children we switched to safe topics like movies, summer bbq's and the like.
Then I noticed one of the boys turned and looking in my direction. As a big, fat guy in a wheelchair, I get looked at a lot. Most of the time I brush it off, but sometimes it annoys me. When children stare, it bothers me that their parents - like this kid's Dad sitting right beside him - don't parent. I was taught not to stare. Now this kid's dad doesn't need to cuff his kid upside the head like my parents did me, but he could have said something.
Joe and Susan were in mid conversation so I mouthed the words, "Don't stare, it's rude" to the boy looking at me. He didn't flush, didn't look away, didn't seem to notice my words or my discomfort with his open gaze. I looked, frustrated up at Dad who was also looking in my direction. But because Dad was taller I could see that he was looking up and over my shoulder. I glanced round and saw a television set behind me playing the sports channel. I quickly glanced back down and really looked at the kid and saw that he wasn't looking at me at all, he was, like his dad looking at the television behind me.
I was so pleased I hadn't spoken louder or in any way caught the child's eyes. I would have looked like a bitter, suspicious old toad who anticipated and expected the worst in others. I would have looked like someone who assumed the worst of humanity and was ready for a fight that didn't need to happen. I would have looked like I had marinated my self in self-righteousness and was ready to fly off the handle at the slightest provocation.
It is my fervent prayer that I don't become that person. That because I've changed status by becoming a member of the disabled classes, I don't cloak myself in negative expectations. I don't want to become dominated by anger and closed to discourse. I don't want to decide that I've learned what all I need from human enterprise and therefore give up on others, on myself and on future friendships.
I know that being in a wheelchair has changed me in the eyes of many. I just don't want to become what others expect.
So I apologize to that kid.
Even though he never noticed what I said to him, I had no right to speak before I understood what was going on.
I'm learning that a lot recently.
The table closest to us had a family of 5. Dad sat at the head of the table, the two young boys sat with their backs to us and the youngest child, a girl, sat beside her Mom on the other side of the table, facing us. I noticed them only briefly when they entered the restaurant as did Susan. We were doing an intake for the Sexuality Clinic so we are always aware of who's around so that we can govern our conversations appropriately. We sometimes forget that words we use on a day to day basis can be shocking or upsetting to those who hear only snippets of conversations. Surrounded by families with children we switched to safe topics like movies, summer bbq's and the like.
Then I noticed one of the boys turned and looking in my direction. As a big, fat guy in a wheelchair, I get looked at a lot. Most of the time I brush it off, but sometimes it annoys me. When children stare, it bothers me that their parents - like this kid's Dad sitting right beside him - don't parent. I was taught not to stare. Now this kid's dad doesn't need to cuff his kid upside the head like my parents did me, but he could have said something.
Joe and Susan were in mid conversation so I mouthed the words, "Don't stare, it's rude" to the boy looking at me. He didn't flush, didn't look away, didn't seem to notice my words or my discomfort with his open gaze. I looked, frustrated up at Dad who was also looking in my direction. But because Dad was taller I could see that he was looking up and over my shoulder. I glanced round and saw a television set behind me playing the sports channel. I quickly glanced back down and really looked at the kid and saw that he wasn't looking at me at all, he was, like his dad looking at the television behind me.
I was so pleased I hadn't spoken louder or in any way caught the child's eyes. I would have looked like a bitter, suspicious old toad who anticipated and expected the worst in others. I would have looked like someone who assumed the worst of humanity and was ready for a fight that didn't need to happen. I would have looked like I had marinated my self in self-righteousness and was ready to fly off the handle at the slightest provocation.
It is my fervent prayer that I don't become that person. That because I've changed status by becoming a member of the disabled classes, I don't cloak myself in negative expectations. I don't want to become dominated by anger and closed to discourse. I don't want to decide that I've learned what all I need from human enterprise and therefore give up on others, on myself and on future friendships.
I know that being in a wheelchair has changed me in the eyes of many. I just don't want to become what others expect.
So I apologize to that kid.
Even though he never noticed what I said to him, I had no right to speak before I understood what was going on.
I'm learning that a lot recently.
Tuesday, August 07, 2007
Difficult Decision
I have just made a difficult decision. I created this blog for several purposes, I wanted to discuss disability issues, have an avenue to air my point of view, engage in a dialogue with readers. Up until yesterday I have been thoroughly enjoying all aspects of this blog.
Then yesterday I began to get comments posted from ARRSE readers who were upset about the stance I took regarding the website. If you'd like to review, Stephen first put me on to the problem in his comment to the post I wrote 7/4/07 called Enough Said. In his comments he talked about a thread on the ARRSE site that used horrific language and abusive images of people with disabilities. I was appauled and wrote a response calling for a protest on 7/5/07 in a post called Go! Now! Start!
Several people mobilized, sent several letters of complaint, the thread was removed and the operater of the ARRSE site was very kind and very nice to deal with. To me, that was it, it was over. Then, for some reason I do not understand, ARRSE readers who took exception to our protest began writing yesterday.
Several of the posts were reasonable, asking us to think of the stress that military personnel face and making claims that indeed most of ARRSE readers and contributers were very generous when it came to disability issues. They argued that this was just an issue of dark humour arising from having seen the darker side of the human soul. This argument might well have stood, however, many of the other comments were simply abusive. These kind souls who would never hurt anyone certainly didn't hold back in trying to hurt me. Name calling, denegrating remarks about who I am and what I do, and then finally the use of ugly language regarding people with disabilities.
I was accused of editting and removing posts, which I did not do. I found leaving them up more instructive as to the true character of those corresponding than anything I could say. However, this site will not and cannot allow language that beats or berates people with disabilities to be posted on site. I have not removed those comments, leaving them there so that no one can suggest that I am fabricating their existance.
Therefore I have made the difficult decision to make it more difficult to leave comments on my blog, making it such that anonymous comments are no longer accepted. I grieve making this decision but I am unwilling to be constantly inundated with hateful email from those pretending to be the kindest of souls.
It is interesting to me that we are all asked to have a sense of humor, perhaps we all need a sense of decency as well. I stand firm on what we did in protesting the language of hate used against people with disabilities - we had a right to protest. So do they, but they do not have a right to abuse me, my readers, or people with disabilities here on this blog.
Then yesterday I began to get comments posted from ARRSE readers who were upset about the stance I took regarding the website. If you'd like to review, Stephen first put me on to the problem in his comment to the post I wrote 7/4/07 called Enough Said. In his comments he talked about a thread on the ARRSE site that used horrific language and abusive images of people with disabilities. I was appauled and wrote a response calling for a protest on 7/5/07 in a post called Go! Now! Start!
Several people mobilized, sent several letters of complaint, the thread was removed and the operater of the ARRSE site was very kind and very nice to deal with. To me, that was it, it was over. Then, for some reason I do not understand, ARRSE readers who took exception to our protest began writing yesterday.
Several of the posts were reasonable, asking us to think of the stress that military personnel face and making claims that indeed most of ARRSE readers and contributers were very generous when it came to disability issues. They argued that this was just an issue of dark humour arising from having seen the darker side of the human soul. This argument might well have stood, however, many of the other comments were simply abusive. These kind souls who would never hurt anyone certainly didn't hold back in trying to hurt me. Name calling, denegrating remarks about who I am and what I do, and then finally the use of ugly language regarding people with disabilities.
I was accused of editting and removing posts, which I did not do. I found leaving them up more instructive as to the true character of those corresponding than anything I could say. However, this site will not and cannot allow language that beats or berates people with disabilities to be posted on site. I have not removed those comments, leaving them there so that no one can suggest that I am fabricating their existance.
Therefore I have made the difficult decision to make it more difficult to leave comments on my blog, making it such that anonymous comments are no longer accepted. I grieve making this decision but I am unwilling to be constantly inundated with hateful email from those pretending to be the kindest of souls.
It is interesting to me that we are all asked to have a sense of humor, perhaps we all need a sense of decency as well. I stand firm on what we did in protesting the language of hate used against people with disabilities - we had a right to protest. So do they, but they do not have a right to abuse me, my readers, or people with disabilities here on this blog.
Monday, August 06, 2007
Bejeweled
Suddenly, I've become addicted to a computer game. This is unusual for me as I'm not much into playing games on the computer. I'm as guilty as anyone for playing the occasional game of solitaire and the even more occasional game of Word Whomp. But I use these games as little treats after writing reports or blogs or whatevers on.
But this game has me really additiced.
Joe too has gotten into playing it. He's a confirmed anti-gamer with the exception of Spider Solitaire. Joe thinks that crosswords come from the 'mothership' of entertainment. He doesn't get games and thinks most of them are just silly. But there he is glued to the screen playing game after game of Bejeweled.
It's a simple minded game, you line up gems in three or more and they disappear to be replaced by others. It's not a game that requires much in the way of skills. But we're spending hours and hours playing it.
Someone said something at work the other day, and now I think I know the attraction of the game. One of the people I work with was in my office and talking about how difficult the job is, emotionally, and was recounting a story of running into the ED who made a brief comment like, "I've been getting good feedback on your work, thanks."
"That's what I needed. I didn't know it, but that's what I needed, just a little bit of praise!"
Funny that we who work in a field that believes in positive reinforcement, for them, don't practice it much with us. I'm good a self reinforcing, it's a skill I learned as a child, so I don't notice going to work day after day after day and getting pay without praise. Sure people are friendly and welcoming, but no one says much about my work - to me. Ummmm, I don't say much about their work to them. Yet I work with people who have skills I really admire.
I was thinking about this while playing Bejewelled, that way I could bill it as work time, and suddenly the game spoke to me, "Excellent" it said when a bunch of gems all exploded at one and point ranked up. I grinned, pleased with myself.
The game is 'reinforceing' me. It's giveing me praise when I play it well.
It's stupid, it's a game, but that tiny bit of praise felt good.
I know from all sorts of experience how praise, honestly given, can affect the self esteem of children, with or without disabilities. I know how praise, withheld, can damage even the best of relationships over time.
So why do I fall out of the habit or being opennly positive?
I don't know why but I did.
Who needs New Years to make a resolution?
Mine begins now.
Excellent - thanks for reading my blog, I truly appreciate it.
But this game has me really additiced.
Joe too has gotten into playing it. He's a confirmed anti-gamer with the exception of Spider Solitaire. Joe thinks that crosswords come from the 'mothership' of entertainment. He doesn't get games and thinks most of them are just silly. But there he is glued to the screen playing game after game of Bejeweled.
It's a simple minded game, you line up gems in three or more and they disappear to be replaced by others. It's not a game that requires much in the way of skills. But we're spending hours and hours playing it.
Someone said something at work the other day, and now I think I know the attraction of the game. One of the people I work with was in my office and talking about how difficult the job is, emotionally, and was recounting a story of running into the ED who made a brief comment like, "I've been getting good feedback on your work, thanks."
"That's what I needed. I didn't know it, but that's what I needed, just a little bit of praise!"
Funny that we who work in a field that believes in positive reinforcement, for them, don't practice it much with us. I'm good a self reinforcing, it's a skill I learned as a child, so I don't notice going to work day after day after day and getting pay without praise. Sure people are friendly and welcoming, but no one says much about my work - to me. Ummmm, I don't say much about their work to them. Yet I work with people who have skills I really admire.
I was thinking about this while playing Bejewelled, that way I could bill it as work time, and suddenly the game spoke to me, "Excellent" it said when a bunch of gems all exploded at one and point ranked up. I grinned, pleased with myself.
The game is 'reinforceing' me. It's giveing me praise when I play it well.
It's stupid, it's a game, but that tiny bit of praise felt good.
I know from all sorts of experience how praise, honestly given, can affect the self esteem of children, with or without disabilities. I know how praise, withheld, can damage even the best of relationships over time.
So why do I fall out of the habit or being opennly positive?
I don't know why but I did.
Who needs New Years to make a resolution?
Mine begins now.
Excellent - thanks for reading my blog, I truly appreciate it.
Sunday, August 05, 2007
Balance
I made a wee bit of money yesterday. Unexpectedly.
Joe and I were heading into Barrie yesterday to see a movie and do some grocery shopping. We decided that it was time to bring the change jar to the 'sort and count' machine that sits by the checkout tills in Sobeys. We got me in beside the machine with the change jar and then Joe headed off to get a buggy and to start shopping. The jar was very full so we knew it would take at least ten minutes for me to dump the change into the tray and then scoot it down into the counter.
I enjoy this job. It's been mine for years, ever since Sobeys installed a change sorter and counter. We always bet how much the tally will come to and we are always far short. So I sat there dumping change, sliding it through the slot and watching the electronic counter add up the money.
"Clink, clink," came the sounds of change that I didn't add in.
Some old guy, much older than me, threw his change into mine, smiled and then rushed away. My cheeks grew hot with embarrassment. Suddenly I realized that I might look like some poor crippled guy turning in my earnings from my tin cup.
"Clink, clink," it happened again. This time it was a young woman with a baby gazing at me as she sat in the basket of the cart. "I hope this helps," her mother said as she walked by.
Believe it or not, I was too stunned to say anything.
Now I'm rushing to get the change in and sorted so that I can get out before anyone else gives me change. I am so conflicted. How dare they think I need their change? Isn't it nice that people want to give to others. HOW DARE THEY THINK I NEED THEIR CHANGE? I have to stop thinking about it and just get the damn change into the machine.
I'm watching others to catch anyone as they approach. I don't want any more change from anyone. I see a young guy, pants hanging low on his hips, approach. "No, thanks," I say and he looks at me confused. Rushing, I explain, "People have been dropping change in here, I'm not a begger, I've got a job. If you were going to give me change, I really don't need it." I can't believe how embarrassed I am. I'm stumbling over my words.
He leans over and glances in the bin and at the amount, "Well got any extra in there for me? I'm not to proud to ask." Now I see that he looks like he could use the money, "Sure," I say and thrust a handful of twoonies and loonies into his hand.
"Thanks, man," he said and strolled on.
I think I gave him more than they gave me.
Balance has been restored to the universe.
Joe and I were heading into Barrie yesterday to see a movie and do some grocery shopping. We decided that it was time to bring the change jar to the 'sort and count' machine that sits by the checkout tills in Sobeys. We got me in beside the machine with the change jar and then Joe headed off to get a buggy and to start shopping. The jar was very full so we knew it would take at least ten minutes for me to dump the change into the tray and then scoot it down into the counter.
I enjoy this job. It's been mine for years, ever since Sobeys installed a change sorter and counter. We always bet how much the tally will come to and we are always far short. So I sat there dumping change, sliding it through the slot and watching the electronic counter add up the money.
"Clink, clink," came the sounds of change that I didn't add in.
Some old guy, much older than me, threw his change into mine, smiled and then rushed away. My cheeks grew hot with embarrassment. Suddenly I realized that I might look like some poor crippled guy turning in my earnings from my tin cup.
"Clink, clink," it happened again. This time it was a young woman with a baby gazing at me as she sat in the basket of the cart. "I hope this helps," her mother said as she walked by.
Believe it or not, I was too stunned to say anything.
Now I'm rushing to get the change in and sorted so that I can get out before anyone else gives me change. I am so conflicted. How dare they think I need their change? Isn't it nice that people want to give to others. HOW DARE THEY THINK I NEED THEIR CHANGE? I have to stop thinking about it and just get the damn change into the machine.
I'm watching others to catch anyone as they approach. I don't want any more change from anyone. I see a young guy, pants hanging low on his hips, approach. "No, thanks," I say and he looks at me confused. Rushing, I explain, "People have been dropping change in here, I'm not a begger, I've got a job. If you were going to give me change, I really don't need it." I can't believe how embarrassed I am. I'm stumbling over my words.
He leans over and glances in the bin and at the amount, "Well got any extra in there for me? I'm not to proud to ask." Now I see that he looks like he could use the money, "Sure," I say and thrust a handful of twoonies and loonies into his hand.
"Thanks, man," he said and strolled on.
I think I gave him more than they gave me.
Balance has been restored to the universe.
Fixing the ADA in the USA
In her response to my post yesterday, Andrea asked me to blog about the petition to restore the ADA in the US. I went to read her post and decided that instead of me writing a bland version of her post that I would ask Fat's American readers to please drop by and read her post on the subject and then go sign the petition. Her address is reunifygally.wordpress.com, once again I'm sorry I don't know how to make it so you can just click and go. Thanks for giving us the heads up about this Andrea.
Saturday, August 04, 2007
Hierarchy
Insolent.
Rude.
Bored.
Slumped back in the chair distractively answering the questions like I was the stupidest person on earth. Hair dyed bright yellow, not blond, yellow. Cell phone flipped open, reading texts as they came in. I didn't know if I should put down as his primary diagnosis 'mild intellectual disability' or 'profoundly teen.'
Teens with a disability are a whole new breed from what I'm used to. "We found for integration and inclusion and got ... this." I thought as I continued on with the intake meeting. Then he looked up at me and said, "So why are you in the wheelchair?" I made a joke, "Because I can't walk." He took it as an answer rather than an attempt at sarcasm - which I thought he'd enjoy - you know, speaking in his native tongue. So I let it drop and continued on.
"Ask me why I didn't sit beside you." Once again he was looking intently at me. I had noticed that he sat a bit away but I thought that's so he could drape his lanky body over three chairs in the meeting room. "I'm ok with where you are sitting." I said and attempted to go on. "No, ask me."
"Why did you sit over there rather than here by me?"
"Because I don't like sitting next to people in wheelchairs." That caught me off guard, to be honest it also pissed me off a bit, and I think my feelings showed in my face, he saw them and continued, "I feel sorry for you guys, being disabled an all."
I so, so, SO wanted to say, "Yeah, well so are you."
But I didn't. Sometimes I think that part of my fee is for restraining myself and corralling my tongue. I just said, "Oh," and went on. As the interview continued it swung round to issues regarding his disability and there was no question that he understood that he had an intellectual disability, that my service and the service of his social worker were based on that disability. He had no problems with that at all.
Interestingly I have met many with intellectual disabilities that see those in wheelchairs as having the 'real' disability and see themselves as much different, and in many ways, much better off than their disabled counterparts with physical disabilities.
Ironically, I have also met many with physical disabilities who want to distance themselves very far from those with intellectual disabilities and in ways seeing intellectual disability as the 'real' disability and themselves as much different and better off than any one with an intellectual disability.
Odd, huh?
It's like even in the disability community there is a heirarchy created by those within. It happens in every minority community, ranking people on some internally created yardstick. Pity that we can't all see that our own heirarchy means nothing to bigots - we are all tarred with the same brush, all lumped together into the same stall. And given that we live in forced confinement with each other, wouldn't it be better if instead of ranking we organized ourselves by strengths and modelled the respect we all want.
Parents, too, play part in this. I remember one mom who honestly told me that she always compared her son to others with disabilities and was relieved when the other's disability was more significant. She said that she could relax into the 'at least my son isn't as bad off as him." She said that she was trying to stop thinking that way, that she had to see her son as part of a greater whole and that he fit where he fit without comparisons and without superiority to one and inferiority to another.
Good goal.
Wonder if we'll ever get there.
Rude.
Bored.
Slumped back in the chair distractively answering the questions like I was the stupidest person on earth. Hair dyed bright yellow, not blond, yellow. Cell phone flipped open, reading texts as they came in. I didn't know if I should put down as his primary diagnosis 'mild intellectual disability' or 'profoundly teen.'
Teens with a disability are a whole new breed from what I'm used to. "We found for integration and inclusion and got ... this." I thought as I continued on with the intake meeting. Then he looked up at me and said, "So why are you in the wheelchair?" I made a joke, "Because I can't walk." He took it as an answer rather than an attempt at sarcasm - which I thought he'd enjoy - you know, speaking in his native tongue. So I let it drop and continued on.
"Ask me why I didn't sit beside you." Once again he was looking intently at me. I had noticed that he sat a bit away but I thought that's so he could drape his lanky body over three chairs in the meeting room. "I'm ok with where you are sitting." I said and attempted to go on. "No, ask me."
"Why did you sit over there rather than here by me?"
"Because I don't like sitting next to people in wheelchairs." That caught me off guard, to be honest it also pissed me off a bit, and I think my feelings showed in my face, he saw them and continued, "I feel sorry for you guys, being disabled an all."
I so, so, SO wanted to say, "Yeah, well so are you."
But I didn't. Sometimes I think that part of my fee is for restraining myself and corralling my tongue. I just said, "Oh," and went on. As the interview continued it swung round to issues regarding his disability and there was no question that he understood that he had an intellectual disability, that my service and the service of his social worker were based on that disability. He had no problems with that at all.
Interestingly I have met many with intellectual disabilities that see those in wheelchairs as having the 'real' disability and see themselves as much different, and in many ways, much better off than their disabled counterparts with physical disabilities.
Ironically, I have also met many with physical disabilities who want to distance themselves very far from those with intellectual disabilities and in ways seeing intellectual disability as the 'real' disability and themselves as much different and better off than any one with an intellectual disability.
Odd, huh?
It's like even in the disability community there is a heirarchy created by those within. It happens in every minority community, ranking people on some internally created yardstick. Pity that we can't all see that our own heirarchy means nothing to bigots - we are all tarred with the same brush, all lumped together into the same stall. And given that we live in forced confinement with each other, wouldn't it be better if instead of ranking we organized ourselves by strengths and modelled the respect we all want.
Parents, too, play part in this. I remember one mom who honestly told me that she always compared her son to others with disabilities and was relieved when the other's disability was more significant. She said that she could relax into the 'at least my son isn't as bad off as him." She said that she was trying to stop thinking that way, that she had to see her son as part of a greater whole and that he fit where he fit without comparisons and without superiority to one and inferiority to another.
Good goal.
Wonder if we'll ever get there.
Friday, August 03, 2007
Just One Of The Dwarves, Please
"He has Down Syndrome."
"Oh, I see."
It seems that often, once you say, "Down Syndrome" an entire image is supposed to form in your mind. Like you've learned the most important thing about someone and now have a pretty good idea of who they are. I just finished reading a book wherein you find out near the end that one of the main characters had a child with Down Syndrome and, at that point the author expects us to 'understand' something about that character because of how he reacts to the child. It's an easy ploy, a way to telegraph something about that charater to us.
But it doesn't work.
People with Down Syndrome have as much variation, one from the other, as any other two people do. Some drive, some walk. Some talk, some struggle. Some smile, some cry. Some are skilled, some need lots of help. People don't wear Down Syndrome like a tailored suit - one size fits all. I made a comment about this to Joe, telling him I liked the book but thought that the inclusion of Down Syndrome that way was a cheap trick.
Joe nodded, like he does when I'm on a tanget.
"What? No What?" I pressed him.
"You do the same. You always write about people with Down Syndrome like that guy who we saw drive the car, you don't much write about guys with Down Syndrome like the guy who always waves us off at your office. If people only knew about Down Sydrome from your blog, they'd be surprised to find ... what was your word ... variation."
"Why do I even have these conversations with you, you just don't get it!!"
We let it drop. The weather is extremely hot. We don't have air conditioning. The radio said either avoid heat or avoid conflict - everyone is edgy. So, I let it drop.
Then Joe picked me up from work and I saw the guy he was talking about. He's got Down Syndrome and though when he waves us off he has a ready smile and wave, he doesn't have that joie-d'vivre that othes with Down Syndrome are purported to have. His face looks purpetually startled, like he's constantly discovering something vaguely unpleasant about life. If he met the seven dwaves it would be 'grumpy' that he had a beer with. Or, so that's my impression.
It's also my impression that he has a whole life, goes to a day programme, is involved in the community. But he ain't ever going to drive a car. He's not going to hold down much of a job. If you are looking for someone with Down Syndrome to make your day brighter like a smiling Buddah, you're looking in the wrong place.
I wonder why people, and writers like me and the other guy, use people with Down Syndrome in ways that both break stereotype by encouraging stereotyping. Why is there a burden put on someone with a disability to 'rise up and above' their disability? Why can't someone just go about having Down Syndrome without having to brighten the world for others? Why does someone already carrying the weight of disability also have to be lumbered with the job of inspiration? This guy just goes about his day. Does what's required of him. Smiles only when he wants to. Grumbles when something goes wrong.
There were seven different Dwarfs but we want only one picture of disability.
Lights. Camera. Inspire!
"Oh, I see."
It seems that often, once you say, "Down Syndrome" an entire image is supposed to form in your mind. Like you've learned the most important thing about someone and now have a pretty good idea of who they are. I just finished reading a book wherein you find out near the end that one of the main characters had a child with Down Syndrome and, at that point the author expects us to 'understand' something about that character because of how he reacts to the child. It's an easy ploy, a way to telegraph something about that charater to us.
But it doesn't work.
People with Down Syndrome have as much variation, one from the other, as any other two people do. Some drive, some walk. Some talk, some struggle. Some smile, some cry. Some are skilled, some need lots of help. People don't wear Down Syndrome like a tailored suit - one size fits all. I made a comment about this to Joe, telling him I liked the book but thought that the inclusion of Down Syndrome that way was a cheap trick.
Joe nodded, like he does when I'm on a tanget.
"What? No What?" I pressed him.
"You do the same. You always write about people with Down Syndrome like that guy who we saw drive the car, you don't much write about guys with Down Syndrome like the guy who always waves us off at your office. If people only knew about Down Sydrome from your blog, they'd be surprised to find ... what was your word ... variation."
"Why do I even have these conversations with you, you just don't get it!!"
We let it drop. The weather is extremely hot. We don't have air conditioning. The radio said either avoid heat or avoid conflict - everyone is edgy. So, I let it drop.
Then Joe picked me up from work and I saw the guy he was talking about. He's got Down Syndrome and though when he waves us off he has a ready smile and wave, he doesn't have that joie-d'vivre that othes with Down Syndrome are purported to have. His face looks purpetually startled, like he's constantly discovering something vaguely unpleasant about life. If he met the seven dwaves it would be 'grumpy' that he had a beer with. Or, so that's my impression.
It's also my impression that he has a whole life, goes to a day programme, is involved in the community. But he ain't ever going to drive a car. He's not going to hold down much of a job. If you are looking for someone with Down Syndrome to make your day brighter like a smiling Buddah, you're looking in the wrong place.
I wonder why people, and writers like me and the other guy, use people with Down Syndrome in ways that both break stereotype by encouraging stereotyping. Why is there a burden put on someone with a disability to 'rise up and above' their disability? Why can't someone just go about having Down Syndrome without having to brighten the world for others? Why does someone already carrying the weight of disability also have to be lumbered with the job of inspiration? This guy just goes about his day. Does what's required of him. Smiles only when he wants to. Grumbles when something goes wrong.
There were seven different Dwarfs but we want only one picture of disability.
Lights. Camera. Inspire!
Thursday, August 02, 2007
Attacking Panic
Take that panic.
I'm still here.
I have the deepest fear about dentists. Of all my phobias, and I have a few, this is one I hold in earnest. Growing up in a small mining town and having parents who had just enough money to get by, dentistry was something that was used to remedy pain, not promote health. We couldn't afford the local doctor of dentistry so we used to go cross the border to Metalaine Falls to see the bargain basement dentist there. It was a hair raising experience. We understood why when we arrived for an appointment to find the dentist office boarded up and local residents telling us that the dentist had been a fraud, a guy with forged dental certificates, who left town before being arrested. He left town with his bags and my confidence in dentists.
So, I go when I'm in pain. Get it done and get out. I have to deal with rising panic for days, horror pictures of dying in the chair, blood spurting from drills gone mad, dance in my head. It's horrible. Then I heard about this dentist in Richmond Hill that volunteered time to practice dentistry with people with severe intellectual and physical disabilities. He was supposed to be a kind and gentle man who did everything he could to make the practice of denstistry accessible to those with deep seated fears like mine.
I go to him rarely. When I have too. My teeth are always a mess when I go and he always admonishes me gently. Like today, "Have you been admonished yet?" "No." "OK, consider it done." Then he straps a thing over my nose and pumps gas in to settle me down. It works. But I'm still aware of what's going on.
Today I had a new hygienist who didn't know my history and my fears.
Before she started I heard my dentist say to her, "Take the time you need, don't rush him through, let him rest when he needs to, everything can be done in an atmosphere of trust and safety. Let him know that you'll be careful and that you care about his experience here. I'll check in occasionally and see how you are both are doing."
I think he thought I was asleep because my eyes were closed and I was drinking deeply of the gas and feeling relaxation, chemical relaxation but relaxation, seep into my bones. I was really touched that he wanted my fear respected, my pace honoured and my experience valued.
These are the kind of people who should be caring for others.
This is what I want for me. So this is what I want for others.
And a message to panic .... nan na na nan na na ... still here.
I'm still here.
I have the deepest fear about dentists. Of all my phobias, and I have a few, this is one I hold in earnest. Growing up in a small mining town and having parents who had just enough money to get by, dentistry was something that was used to remedy pain, not promote health. We couldn't afford the local doctor of dentistry so we used to go cross the border to Metalaine Falls to see the bargain basement dentist there. It was a hair raising experience. We understood why when we arrived for an appointment to find the dentist office boarded up and local residents telling us that the dentist had been a fraud, a guy with forged dental certificates, who left town before being arrested. He left town with his bags and my confidence in dentists.
So, I go when I'm in pain. Get it done and get out. I have to deal with rising panic for days, horror pictures of dying in the chair, blood spurting from drills gone mad, dance in my head. It's horrible. Then I heard about this dentist in Richmond Hill that volunteered time to practice dentistry with people with severe intellectual and physical disabilities. He was supposed to be a kind and gentle man who did everything he could to make the practice of denstistry accessible to those with deep seated fears like mine.
I go to him rarely. When I have too. My teeth are always a mess when I go and he always admonishes me gently. Like today, "Have you been admonished yet?" "No." "OK, consider it done." Then he straps a thing over my nose and pumps gas in to settle me down. It works. But I'm still aware of what's going on.
Today I had a new hygienist who didn't know my history and my fears.
Before she started I heard my dentist say to her, "Take the time you need, don't rush him through, let him rest when he needs to, everything can be done in an atmosphere of trust and safety. Let him know that you'll be careful and that you care about his experience here. I'll check in occasionally and see how you are both are doing."
I think he thought I was asleep because my eyes were closed and I was drinking deeply of the gas and feeling relaxation, chemical relaxation but relaxation, seep into my bones. I was really touched that he wanted my fear respected, my pace honoured and my experience valued.
These are the kind of people who should be caring for others.
This is what I want for me. So this is what I want for others.
And a message to panic .... nan na na nan na na ... still here.
Wednesday, August 01, 2007
Ymir
There were a group of ruffian boys from Ymir. As Ymir was a few miles outside of Salmo, where I went to school, they arrived in busses. The whole tenor of the hallways changed when the boys from Ymir arrived. They didn't terrorize the school with violence but they managed to intimidate pretty much all of us with their swagger, their angular bodies and their aggressive chins. One of the leaders of the pack was in a grade older than me but in a class by himself. He wore tight jeans, slicked back hair and had a rat tailed comb always jutting out his pocket. He probably could speak but was way to cool to actually say anything. In short, he frightened me. They all did, those Ymir boys.
We crossed paths one day, unexpectedly.
It was gym class and the regular gym teacher was away. They didn't have a substitute in for him so the shop class teacher took over for the day. He told us that we were going to wrestle and had us pull mats out on the the floor. I refused to wrestle. The idea of wrestling bothered me. I grew up in a home with violence, I didn't need it thrust upon me at school. So I just refused. Completely. The regular gym teacher just gave up on me - which was the point of my plan. But Mr. Meyers wasn't having any of it.
When I told him, right off that I wouldn't wrestle, he told me that I would do exactly what he told me too. I had nothing to lose. I wasn't taken seriously in any aspect of my school life so when you have nothing and have learned to want less, you have a certain degree of power. What could he do? He became increasingly angry and it was clear that he wasn't used to having his authority challenged. Especially by this weak, fat, stupid boy.
Others using the gym stopped. The Ymir guy was there, I am so sorry I don't remember his name, and watching along with everyone else. I think they were interested to see how it would play out. Myers began to sweat and then grabbed me hard. Illegal hard. Brusing hard. He thrust me onto the mat. I lost my balance and fell. One of the other kids from my class, a young sociopath, was told to 'partner' me in the match.
He fell on me with glee. I didn't fight back. I refused. All I did was struggle not to be toppled or hurt. But he did hurt me. Badly. I cried out in pain for it to stop and Meyers had a glint in his eyes that wasn't healthy. Now I'm on my back and this animal/child is pummelling me. I am truly frightened now. I can't help it I start to cry. He's really hurting me. The other kids egg him on. Laughing. No surprise, I'd been bullied my whole life, hurt for no reason, taunted as easy game. It was fun for one and all.
I didn't see him coming.
The Ymir boy.
He seemed like a man then but he was only a young teen. But one year older, one grade advanced, in those days made a huge difference.
He grabbed the kid off me, flung him to the floor so hard that I could feel the floor vibrate below me. He grabbed my arm and hoisted me up. He told me to go change.
Meyers was furious. But he was also terrified. He knew that this kid was dangerous to him in a myriad of ways.
He let it go.
He let me pass.
A day later I saw that kid in the hallway and I wanted to say "Thanks." But he stopped me, looked at me angrily and said one word, "Don't."
That was it.
He protected me when he didn't have to, he put his reputation as a guy who didn't give a shit about anything or anyone at risk, he saw an injustice and acted, he didn't want thanked for it.
He's still a role model for me.
That boy from Ymir.
We crossed paths one day, unexpectedly.
It was gym class and the regular gym teacher was away. They didn't have a substitute in for him so the shop class teacher took over for the day. He told us that we were going to wrestle and had us pull mats out on the the floor. I refused to wrestle. The idea of wrestling bothered me. I grew up in a home with violence, I didn't need it thrust upon me at school. So I just refused. Completely. The regular gym teacher just gave up on me - which was the point of my plan. But Mr. Meyers wasn't having any of it.
When I told him, right off that I wouldn't wrestle, he told me that I would do exactly what he told me too. I had nothing to lose. I wasn't taken seriously in any aspect of my school life so when you have nothing and have learned to want less, you have a certain degree of power. What could he do? He became increasingly angry and it was clear that he wasn't used to having his authority challenged. Especially by this weak, fat, stupid boy.
Others using the gym stopped. The Ymir guy was there, I am so sorry I don't remember his name, and watching along with everyone else. I think they were interested to see how it would play out. Myers began to sweat and then grabbed me hard. Illegal hard. Brusing hard. He thrust me onto the mat. I lost my balance and fell. One of the other kids from my class, a young sociopath, was told to 'partner' me in the match.
He fell on me with glee. I didn't fight back. I refused. All I did was struggle not to be toppled or hurt. But he did hurt me. Badly. I cried out in pain for it to stop and Meyers had a glint in his eyes that wasn't healthy. Now I'm on my back and this animal/child is pummelling me. I am truly frightened now. I can't help it I start to cry. He's really hurting me. The other kids egg him on. Laughing. No surprise, I'd been bullied my whole life, hurt for no reason, taunted as easy game. It was fun for one and all.
I didn't see him coming.
The Ymir boy.
He seemed like a man then but he was only a young teen. But one year older, one grade advanced, in those days made a huge difference.
He grabbed the kid off me, flung him to the floor so hard that I could feel the floor vibrate below me. He grabbed my arm and hoisted me up. He told me to go change.
Meyers was furious. But he was also terrified. He knew that this kid was dangerous to him in a myriad of ways.
He let it go.
He let me pass.
A day later I saw that kid in the hallway and I wanted to say "Thanks." But he stopped me, looked at me angrily and said one word, "Don't."
That was it.
He protected me when he didn't have to, he put his reputation as a guy who didn't give a shit about anything or anyone at risk, he saw an injustice and acted, he didn't want thanked for it.
He's still a role model for me.
That boy from Ymir.
Tuesday, July 31, 2007
Fries and Gravy
Slapped with a memory. Two in fact.
Whenever my mind reaches into memory, out of the blue, it's never good. Rarely good. Usually some past horror, some embarrassment that won't fade comes fully in to view, filling up my mind's eye. But today, for some inexplicable reason, I was hit - one - two - with memories that were different. It was like my heart or soul was trying to get a message through to me. Fully aware that I'm being overly exhibitionistic with my life right now, I'm going to record both memories for you. One today, one tomorrow.
I've mentioned that my childhood wasn't a pleasant one at home, well it wasn't much better at school. I wasn't bright, attractive, athletic, rich - I was the kid who made Valentines for myself so my box wouldn't be empty. I was that kid.
It's odd what you get used to. After a few years of being outside, I grew to prefer rain. I developed an internal life that I still cherish, I developed a keen ability to watch others without being seen, I developed an allergy to phony, pitying smiles. All that's OK with me now and, in fact, I'm OK with me now.
But there was one night. I would have just been 16. I was downtown and walking home. There was a gang of the popular kids from my grade at school and I just put my head down and walked through them. They weren't a gang, really, it was just a bunch of kids hanging out. You could almost smell their popularity as they joked and kidded with each other. Suddenly one of the girls suggested they all hop into their cars and head out of town to the Husky gas station for fries and gravy.
They were tumbling to cars when I heard a voice say to me, "You want to ride with me?"
It was Dale.
He was the coolest guy in our grade. Good looking, athletic, rich, bright - the opposite of everything I was. I looked at him in shock. I'd been tricked before and I wasn't getting caught again. I didn't even answer.
"Really, you want to go with me?" And he pointed to his pick up truck. His smile seemed genuine.
The other cars were pulling away and it was clear that he was including me. I mistrusted his intentions but I wanted to go. I wanted to just feel what it was like to be part of the group. Included. For once. Included.
I got in the truck and he put on the radio and we sped out. I had no words. I didn't know how to talk with the likes of him. So he just chatted about the music and made jokes about school and teachers and such. I relaxed into the car. I knew I didn't have to talk. And suddenly I knew that it was going to be all OK.
We had chips and gravy and though the other kids weren't really keen on me being there, no one dared say anything to Dale. Such was the power of his popularity.
He drove me back and this time I talked a bit and he seemed to think I was kind of funny. He dropped me off at my house and I felt somehow subtly changed by that hour and a half.
Not much changed at school, except there was less teasing, less to be afraid of. Dale never really talked to me again after that but he did always say, "Hey" when he saw me in the hallway.
I don't know what made him want to be kind to me that day. I don't know why he decided that I was human and deserving of a break.
But, I don't care why.
He gave me a memory, this memory, and it's a nice one to have.
Whenever my mind reaches into memory, out of the blue, it's never good. Rarely good. Usually some past horror, some embarrassment that won't fade comes fully in to view, filling up my mind's eye. But today, for some inexplicable reason, I was hit - one - two - with memories that were different. It was like my heart or soul was trying to get a message through to me. Fully aware that I'm being overly exhibitionistic with my life right now, I'm going to record both memories for you. One today, one tomorrow.
I've mentioned that my childhood wasn't a pleasant one at home, well it wasn't much better at school. I wasn't bright, attractive, athletic, rich - I was the kid who made Valentines for myself so my box wouldn't be empty. I was that kid.
It's odd what you get used to. After a few years of being outside, I grew to prefer rain. I developed an internal life that I still cherish, I developed a keen ability to watch others without being seen, I developed an allergy to phony, pitying smiles. All that's OK with me now and, in fact, I'm OK with me now.
But there was one night. I would have just been 16. I was downtown and walking home. There was a gang of the popular kids from my grade at school and I just put my head down and walked through them. They weren't a gang, really, it was just a bunch of kids hanging out. You could almost smell their popularity as they joked and kidded with each other. Suddenly one of the girls suggested they all hop into their cars and head out of town to the Husky gas station for fries and gravy.
They were tumbling to cars when I heard a voice say to me, "You want to ride with me?"
It was Dale.
He was the coolest guy in our grade. Good looking, athletic, rich, bright - the opposite of everything I was. I looked at him in shock. I'd been tricked before and I wasn't getting caught again. I didn't even answer.
"Really, you want to go with me?" And he pointed to his pick up truck. His smile seemed genuine.
The other cars were pulling away and it was clear that he was including me. I mistrusted his intentions but I wanted to go. I wanted to just feel what it was like to be part of the group. Included. For once. Included.
I got in the truck and he put on the radio and we sped out. I had no words. I didn't know how to talk with the likes of him. So he just chatted about the music and made jokes about school and teachers and such. I relaxed into the car. I knew I didn't have to talk. And suddenly I knew that it was going to be all OK.
We had chips and gravy and though the other kids weren't really keen on me being there, no one dared say anything to Dale. Such was the power of his popularity.
He drove me back and this time I talked a bit and he seemed to think I was kind of funny. He dropped me off at my house and I felt somehow subtly changed by that hour and a half.
Not much changed at school, except there was less teasing, less to be afraid of. Dale never really talked to me again after that but he did always say, "Hey" when he saw me in the hallway.
I don't know what made him want to be kind to me that day. I don't know why he decided that I was human and deserving of a break.
But, I don't care why.
He gave me a memory, this memory, and it's a nice one to have.
Monday, July 30, 2007
Now THAT'S a Ride
"She's going to love your chair!"
Ruby is now just shy of a year old. It's been wonderful watching her grow and develop from day to day. I held her when she was just hours old and now I feel a kinship with her as she crawls around the floor. We two are the one's who don't walk.
Mike had said that she loves anything that she can climb up and that my wheelchair was going to be her new favourite toy. It was. She took one look at me rolling in to the apartment and her eyes went from recognition - "Hey, I know that guy!" - to excitement "Never noticed the wheelchair, wow, now that 's a cool toy." - to desire - "I'm heading over there to get a closer look." - and curiosity - "I wonder what it tastes like?" All those looks in just a fleeting moment.
Then she was off. I saw her coming and locked the chair to ensure that it wouldn't move and then watched her size up the chair like a mountain climber searching for the safest passage. Once she figured it out, she began to climb. Seconds later she was standing up and reaching out her hand to me. I took it and she grinned. But enough of that, she let go and then began moving carefully around the chair testing out how far she could go while still standing.
Now she's under the chair banging at the wheels and laughing. I feel her hit at the back of my legs and then attempt to climb again but finding that there wasn't quite enough room under the chair for her to stand. She didn't tire of exploring the chair for ten or twelve minutes. She covered the whole thing, grabbed at the bag on the back, tried to twist the rubber off the foot lifts on the back, chased a ball underneath and through the wheels.
I felt like the best ride at an amusement park.
When we left Joe commented that the wheelchair was a big hit with Ruby. Even though I've been in the chair since she was borne and have held her sleeping while sitting in the chair, this is the first time she noticed it.
And it didn't scare her.
It just intrigued her.
She stilled climbed up my chest, danced while standing on my knees, and giggled when her dad grabbed her off me and up into the air.
But now I am complete to her, I come attached to my wheels.
Though I'm not Dave to her yet, I'm still - "Hey, I recognize you!"
That's good enough for now.
Ruby is now just shy of a year old. It's been wonderful watching her grow and develop from day to day. I held her when she was just hours old and now I feel a kinship with her as she crawls around the floor. We two are the one's who don't walk.
Mike had said that she loves anything that she can climb up and that my wheelchair was going to be her new favourite toy. It was. She took one look at me rolling in to the apartment and her eyes went from recognition - "Hey, I know that guy!" - to excitement "Never noticed the wheelchair, wow, now that 's a cool toy." - to desire - "I'm heading over there to get a closer look." - and curiosity - "I wonder what it tastes like?" All those looks in just a fleeting moment.
Then she was off. I saw her coming and locked the chair to ensure that it wouldn't move and then watched her size up the chair like a mountain climber searching for the safest passage. Once she figured it out, she began to climb. Seconds later she was standing up and reaching out her hand to me. I took it and she grinned. But enough of that, she let go and then began moving carefully around the chair testing out how far she could go while still standing.
Now she's under the chair banging at the wheels and laughing. I feel her hit at the back of my legs and then attempt to climb again but finding that there wasn't quite enough room under the chair for her to stand. She didn't tire of exploring the chair for ten or twelve minutes. She covered the whole thing, grabbed at the bag on the back, tried to twist the rubber off the foot lifts on the back, chased a ball underneath and through the wheels.
I felt like the best ride at an amusement park.
When we left Joe commented that the wheelchair was a big hit with Ruby. Even though I've been in the chair since she was borne and have held her sleeping while sitting in the chair, this is the first time she noticed it.
And it didn't scare her.
It just intrigued her.
She stilled climbed up my chest, danced while standing on my knees, and giggled when her dad grabbed her off me and up into the air.
But now I am complete to her, I come attached to my wheels.
Though I'm not Dave to her yet, I'm still - "Hey, I recognize you!"
That's good enough for now.
Sunday, July 29, 2007
The Same Difference
We parked on Queen Street and Joe and Mike ran into a hole in the wall restaurant to order vegetarian Chinese food. Mike had been going on about this place for a while. We'd dropped by to visit with baby Ruby so we had him bring us here afterwards so we could pick up food for dinner when we got home. The place wasn't accessible so I waited in the car and watched the street go by. This was a section of Queen Street that was home to many of the cool and the young. While I've been young, I've never been cool so I watched them in strange fascination.
They were, to a one, pierced and tattooed and otherwise adorned with emblems of outsider status. One woman, no kidding, had blue dots either painted or tattooed on the backs of her legs. The dots were about the sice of a donut hole and started at her ankle and, with an inch between each, went up past her very short skirt. One fellow went by with his earlobes so stretched that you could have driven a limo through them. Another guy was shirtless in the summer heat and he wore a woman's earring through his right nipple. All had adopted that world weary, I've seen it all and every bit of it bored me, look.
Then, round the corner, comes a woman of the same age. She is using a walker, one of those cool kinds that - turn it around and you can sit down. As she approaches I notice that she's quite pretty. Her gait is odd, but she is steadied by the walker and makes quite good time coming up towards me. She like the others has a tattoo, hers is on her neck. When she gets close I see that she's tattooed the wheelchair blue badge guy on her neck. "Now that," I thought, "is cool" and immediately decided to get one myself.
But something happened on the streetfront. Even though she was beautiful, and clearly had both a sense of humour and a sense of purpose, she walked through people who did everything they could to not look at her. Not embrace her with their eyes. I guess this was too much difference.
Why is it that, often, people who affect difference really can't tolerate it? Those who are the 'decorated ordinary,' the 'mutilated mundane,' the 'unextraordinary ordinary' who do everything to stand out with a crowd, only end up being part of one? They like difference - only they like the same difference, the pretend one. I guess to them 'outsider' really meant 'insider'.
It seemed to bother only me because she made her way up the street with the casualness of one who is used to stares. Then I heard a shout from across the street and a young man, with a faux hawk, waved a heavily tattooed arm and made the 'wait there' sign. She stopped, gripped her walker with one hand and raised the other. When there was a break in traffic he ran across the street and swept her up in his arms and they kissed. There should have been movie music.
He linked his arm in hers, she took the walker in her hands and they walked out of my view. But before they disappeared I saw the look on her face as she looked at him, adoration. I heard them laugh together. Then they were gone.
It's amazing, isn't it, how the love of one good person ...
... can erase the indignities of walking the gauntlet of everyday bigotry.
Oh, and only because it matters to me, the food was very very good.
They were, to a one, pierced and tattooed and otherwise adorned with emblems of outsider status. One woman, no kidding, had blue dots either painted or tattooed on the backs of her legs. The dots were about the sice of a donut hole and started at her ankle and, with an inch between each, went up past her very short skirt. One fellow went by with his earlobes so stretched that you could have driven a limo through them. Another guy was shirtless in the summer heat and he wore a woman's earring through his right nipple. All had adopted that world weary, I've seen it all and every bit of it bored me, look.
Then, round the corner, comes a woman of the same age. She is using a walker, one of those cool kinds that - turn it around and you can sit down. As she approaches I notice that she's quite pretty. Her gait is odd, but she is steadied by the walker and makes quite good time coming up towards me. She like the others has a tattoo, hers is on her neck. When she gets close I see that she's tattooed the wheelchair blue badge guy on her neck. "Now that," I thought, "is cool" and immediately decided to get one myself.
But something happened on the streetfront. Even though she was beautiful, and clearly had both a sense of humour and a sense of purpose, she walked through people who did everything they could to not look at her. Not embrace her with their eyes. I guess this was too much difference.
Why is it that, often, people who affect difference really can't tolerate it? Those who are the 'decorated ordinary,' the 'mutilated mundane,' the 'unextraordinary ordinary' who do everything to stand out with a crowd, only end up being part of one? They like difference - only they like the same difference, the pretend one. I guess to them 'outsider' really meant 'insider'.
It seemed to bother only me because she made her way up the street with the casualness of one who is used to stares. Then I heard a shout from across the street and a young man, with a faux hawk, waved a heavily tattooed arm and made the 'wait there' sign. She stopped, gripped her walker with one hand and raised the other. When there was a break in traffic he ran across the street and swept her up in his arms and they kissed. There should have been movie music.
He linked his arm in hers, she took the walker in her hands and they walked out of my view. But before they disappeared I saw the look on her face as she looked at him, adoration. I heard them laugh together. Then they were gone.
It's amazing, isn't it, how the love of one good person ...
... can erase the indignities of walking the gauntlet of everyday bigotry.
Oh, and only because it matters to me, the food was very very good.
Saturday, July 28, 2007
Oh No They Want Me To Grow
My old computer died yesterday. It was 14 years old and a reliable clunker of a machine. I wrote books on that computer, thousands of reports, a couple of poems and every blog until this one. Now sitting in front of me is a new computer tower - a cast off from a friend who upgraded not long ago - and I feel like I'm at the beginning of a whole new relationship. One thrust upon me, not one chosen.
I don't replace things easily. Long time readers will remember that I was all excited a while back about getting a new chair. I was embarrassed to follow up with the fact that the new chair wasn't exactly right and I was supposed to replace the order and get the right one. I'm still in the old chair. I desperately need the new chair, but I like this one. It's comfortable. It's got a history with me. I know it's just a chair, but it's my chair.
These things I hang on to are no real problem for me, they are just quirks of personality, we all have them. But right now, thinking about this, I realize that the problem that I have is that I don't let go of much. Once I get an idea into my head, it takes emotional dynamite to blast it out. Once I have a way of doing something, I churl inside when change is suggested. Once I have a preconception (nice word for prejudice) it's set for life. I do change, I do grow, but almost all change and all growth is rooted in the bedrock of my belief system. This makes it such that while I grow and change, that just means that I become more intensely me - a bigger tree but with a new branch.
This is not always good.
I was talking to someone from an agency who wants to change. They want to bring in a new approach to supporting people with disabilities and they want me to help them do that. I'm thrilled about that. I love it when people come to the point that they realize change is necessary and that grow comes from a radical reviewing of past in order to move on to an exciting future.
"But," they said, "we don't want just rehashed stuff you've done in the past. We want you to come with new and fresh ideas. We want you to rethink what you've been doing and why. We don't just want what you do by habit, we want what you do when you start fresh."
Hey! HEY! They're supposed to want to change. Not me.
I'm in my fifties, I'm almost past my due date.
If I was a jug of milk, I wouldn't drink me.
However much I resent the challenge, I'm going to take it. I'm going to refresh myself by looking carefully at what others are now saying. Taking a look at some ideas that I just summarily tossed out. When I was young, I used to love learning and changing and being open to new ideas. Now I get a cramp just thinking about thinking.
But, tomorrow, I'm going to make a list of what I believe.
Then I'm going to evaluate those beliefs carefully.
Who knows.
Maybe you can teach an old dog ....
I don't replace things easily. Long time readers will remember that I was all excited a while back about getting a new chair. I was embarrassed to follow up with the fact that the new chair wasn't exactly right and I was supposed to replace the order and get the right one. I'm still in the old chair. I desperately need the new chair, but I like this one. It's comfortable. It's got a history with me. I know it's just a chair, but it's my chair.
These things I hang on to are no real problem for me, they are just quirks of personality, we all have them. But right now, thinking about this, I realize that the problem that I have is that I don't let go of much. Once I get an idea into my head, it takes emotional dynamite to blast it out. Once I have a way of doing something, I churl inside when change is suggested. Once I have a preconception (nice word for prejudice) it's set for life. I do change, I do grow, but almost all change and all growth is rooted in the bedrock of my belief system. This makes it such that while I grow and change, that just means that I become more intensely me - a bigger tree but with a new branch.
This is not always good.
I was talking to someone from an agency who wants to change. They want to bring in a new approach to supporting people with disabilities and they want me to help them do that. I'm thrilled about that. I love it when people come to the point that they realize change is necessary and that grow comes from a radical reviewing of past in order to move on to an exciting future.
"But," they said, "we don't want just rehashed stuff you've done in the past. We want you to come with new and fresh ideas. We want you to rethink what you've been doing and why. We don't just want what you do by habit, we want what you do when you start fresh."
Hey! HEY! They're supposed to want to change. Not me.
I'm in my fifties, I'm almost past my due date.
If I was a jug of milk, I wouldn't drink me.
However much I resent the challenge, I'm going to take it. I'm going to refresh myself by looking carefully at what others are now saying. Taking a look at some ideas that I just summarily tossed out. When I was young, I used to love learning and changing and being open to new ideas. Now I get a cramp just thinking about thinking.
But, tomorrow, I'm going to make a list of what I believe.
Then I'm going to evaluate those beliefs carefully.
Who knows.
Maybe you can teach an old dog ....
Friday, July 27, 2007
Hairspray
We went to see "Hairspray" after work yesterday and from the moment that amazing 17 year old actress - Nicky - took to the screen I couldn't look away. A joyous film about difference and diversity and though it never mentioned disability, it didn't matter. This was a film about the joy of living with a difference. When the original move came out the focus was on race and the fight for the end of racial segregation. While that is still a huge part of it too, the movies message on weight and looks, feels equally powerful. Tracy, the main character is a very large girl (17 is still a girl) who wants to dance on a local television show. Her mother, a woman who won't leave the house because of her weight wants to forbid her daughter to try out, "they don't hire girls who look like Tracy."
The whole theatre was rocking with the music, laughing at the lines and rooting for the main characters. There were whacks of people up on the screen that you could identify with, empathize with, and hope with. When the movie ended the audience burst into applause.
I asked Joe if we could wait through the end credits to see if Nicky (to lazy to look up her last name but it doesn't matter) did her own singing in the film. Sure enough she did. Everyone else was out of the theatre except one mom and one little girl. The little girl wouldn't leave the theatre because she stood and danced along to the end credit music. Mom just sat and watched as her little girl cut a rug.
They passed by us and we could hear the little girl talking. "She was just like me mom. Just like me." In the light I now saw her, she had Down Syndrome and she was talking rapidly. "Everybody thought she couldn't dance but she could. Just like me, everybody thinks I'm dumb, but I'm not." Then she hugged herself and screamed happily, "She was just like me!" This may have been her first experience with identifying totally with someone else's oppression and someone else's courage. She hugged herself and hugged herself.
Mom was wiping tears away from her eyes and so was I. As I rolled by I said to Mama, "Great movie, huh?"
Mom said, "I am going to treasure this moment for the rest of my life."
I glanced over at the little girl, hugging herself in excitement, thrilled at the message that she could rise above expectations, that someone else who was different - won.
I said, "I'm going to too."
And I will.
Because ... oh hell ... "She's just like me! She's just like me!"
The whole theatre was rocking with the music, laughing at the lines and rooting for the main characters. There were whacks of people up on the screen that you could identify with, empathize with, and hope with. When the movie ended the audience burst into applause.
I asked Joe if we could wait through the end credits to see if Nicky (to lazy to look up her last name but it doesn't matter) did her own singing in the film. Sure enough she did. Everyone else was out of the theatre except one mom and one little girl. The little girl wouldn't leave the theatre because she stood and danced along to the end credit music. Mom just sat and watched as her little girl cut a rug.
They passed by us and we could hear the little girl talking. "She was just like me mom. Just like me." In the light I now saw her, she had Down Syndrome and she was talking rapidly. "Everybody thought she couldn't dance but she could. Just like me, everybody thinks I'm dumb, but I'm not." Then she hugged herself and screamed happily, "She was just like me!" This may have been her first experience with identifying totally with someone else's oppression and someone else's courage. She hugged herself and hugged herself.
Mom was wiping tears away from her eyes and so was I. As I rolled by I said to Mama, "Great movie, huh?"
Mom said, "I am going to treasure this moment for the rest of my life."
I glanced over at the little girl, hugging herself in excitement, thrilled at the message that she could rise above expectations, that someone else who was different - won.
I said, "I'm going to too."
And I will.
Because ... oh hell ... "She's just like me! She's just like me!"
Thursday, July 26, 2007
Thankful Thursday
I was browsing the disability web and came across pipecleanerdreams.blogspot.com last week and there was a post that caught me. It was called Thankful Thursday and a list followed of things for which thanks was being given. I liked the idea and am borrowing it here today. I'm in a thankful mood and as I'm sitting here with a cup of steaming green tea and a view of a lawn that needs cut, I choose today to be grateful - out loud.
1) I am grateful to live now. Though there is much to be done and many more battles to be fought, I live in a time of cut curbs and a growing sense of enfrancisement within the disability community. There was a time when babies with disabilities were cast down or cast out. There was a time of mass slaughter of those with disabilities, mass sterilization and mass segretation, not long gone but not here now. I am grateful to be here in my home - adapted, to got to work - adapted, to live fully free - adapted.
2) I am grateful for laughter. We spent three hours over lunch on Sunday laughing. Hard. Spitting tea out your nose laughing. Never noticed the others in the room, didn't care about decorum, just laughed freely. What joy. It strikes me that my fondest memories of times at work are times when we jsut laughed. Working with Bob all those years ago, we hurt from laughter - it's what I miss about him most. In fact, that's what I miss about youth, I laughed more then. I vow more laughter in my life.
3) I am grateful for dogs. I miss mine, of course, but I still see bits of Eric bits of Fred in other dogs. Leaving YAI on Friday Bobra and I waited for Joe to pull the car up to get me. We spotted a guy with a dog a few feet away. He brought her over to meet with us. She was a rescue dog, who after talking to him may have rescued him too. She let me pet her. I have always been amazed at how well dogs heads fit in the palms of our hands. She seemed to know that I needed to give her affection so she let me. She gazed up at me with pure contentment as I stroked her fur. New York's noise came to a quiet for a few seconds, a hole was created in time and I was just a little boy with a dog.
4) I am grateful for green tea. A long while back Belinda made reference to a tea PRN and I loved the idea. I knew exactly what she meant. I take my tea seriously and drink cup after cup each day. But I have special tea times. Quiet times when I let tea work it's magic on me. It is then that tea is like a massage for the soul. It lifts and calms. On our way home from New York we stopped at our favourite grocery store in Buffalo to buy groceries. I sat in front of a wall of green tea, it almost seemed like a place to pray. I chose a few new kinds I haven't tried. I can't believe this stuff is legal. I want to be buried with a bag of green tea held in my right hand.
5) I am thankful for being allowed to be in the lives of others. At YAI, training on behavioural approaches, I noticed a big beautiful bright black woman with wild hair and a huge grin. She defined beauty. All though the day, she was a step ahead of me. She outpaced me. She grew faster than the material I presented. At the end of the day I called her over and asked her if she knew how bright she was, if she understood her own talent. I encouraged her to follow that talent, and I could tell by the light that went on in her eyes, that she would remember this day. I got to do that, give that to her, how great is that?
So there are a few things I'm thankful for, I'm also thankful for the idea for this post so please pop over and visit pipecleanerdreams. But if you've a mind, tell me what you're grateful for, leave your address in the responses and we'll all pop over for a visit.
1) I am grateful to live now. Though there is much to be done and many more battles to be fought, I live in a time of cut curbs and a growing sense of enfrancisement within the disability community. There was a time when babies with disabilities were cast down or cast out. There was a time of mass slaughter of those with disabilities, mass sterilization and mass segretation, not long gone but not here now. I am grateful to be here in my home - adapted, to got to work - adapted, to live fully free - adapted.
2) I am grateful for laughter. We spent three hours over lunch on Sunday laughing. Hard. Spitting tea out your nose laughing. Never noticed the others in the room, didn't care about decorum, just laughed freely. What joy. It strikes me that my fondest memories of times at work are times when we jsut laughed. Working with Bob all those years ago, we hurt from laughter - it's what I miss about him most. In fact, that's what I miss about youth, I laughed more then. I vow more laughter in my life.
3) I am grateful for dogs. I miss mine, of course, but I still see bits of Eric bits of Fred in other dogs. Leaving YAI on Friday Bobra and I waited for Joe to pull the car up to get me. We spotted a guy with a dog a few feet away. He brought her over to meet with us. She was a rescue dog, who after talking to him may have rescued him too. She let me pet her. I have always been amazed at how well dogs heads fit in the palms of our hands. She seemed to know that I needed to give her affection so she let me. She gazed up at me with pure contentment as I stroked her fur. New York's noise came to a quiet for a few seconds, a hole was created in time and I was just a little boy with a dog.
4) I am grateful for green tea. A long while back Belinda made reference to a tea PRN and I loved the idea. I knew exactly what she meant. I take my tea seriously and drink cup after cup each day. But I have special tea times. Quiet times when I let tea work it's magic on me. It is then that tea is like a massage for the soul. It lifts and calms. On our way home from New York we stopped at our favourite grocery store in Buffalo to buy groceries. I sat in front of a wall of green tea, it almost seemed like a place to pray. I chose a few new kinds I haven't tried. I can't believe this stuff is legal. I want to be buried with a bag of green tea held in my right hand.
5) I am thankful for being allowed to be in the lives of others. At YAI, training on behavioural approaches, I noticed a big beautiful bright black woman with wild hair and a huge grin. She defined beauty. All though the day, she was a step ahead of me. She outpaced me. She grew faster than the material I presented. At the end of the day I called her over and asked her if she knew how bright she was, if she understood her own talent. I encouraged her to follow that talent, and I could tell by the light that went on in her eyes, that she would remember this day. I got to do that, give that to her, how great is that?
So there are a few things I'm thankful for, I'm also thankful for the idea for this post so please pop over and visit pipecleanerdreams. But if you've a mind, tell me what you're grateful for, leave your address in the responses and we'll all pop over for a visit.
Wednesday, July 25, 2007
Tongue
I was in the lineup for Starbucks at a rest stop on our way home. We knew we wouldn't make it all the way so we weren't in a huge rush. I had the desire for a green tea and we both had to 'make water'. The line up was long and there was a couple behind me. Whoa! Were they mad at each other. They snapped at each other, each blaming the other for something that had happened at a family visit. Each doing what they could to hurt one another.
Joe came and joined me and we joked about something he'd seen in the gift shop and I made sure I knew what kind of treat he wanted from the glass cage. Bored, Joe went out to stroll through the booths of vendors at the front door. He promised to keep an eye on me to see when I got up to the counter so he could come back and help carry the drinks and treats.
The couple behind had fallen silent. She then offered to go get a pretzel to share, he said he didn't want to share one, if she wanted it go get it for herself. Then she said something I couldn't hear. He said that she had been sarcastic towards him for two days so why would he want to share something with her now.
I tried to edge myself away from their negativity but I couldn't get far enough away to stop their anger from flowing down from their lips over my shoulders. I glanced out the door and saw Joe making a face at me wearing large brightly coloured sunglasses. I waved and laughed out loud.
Then the angry guy behind said, pointing at me, "With all you've got you are never happy. Look at him, look at what he looks like, look at what he faces every day in his wheelchair, and yet he's happy. What's wrong with you? Why can't you be even a little like him?"
Everyone heard his outburst. He didn't care, he was angry. She stormed away.
I was mortified. Didn't know what to do with my eyes.
Neither did anyone else.
Then I was at the till and I ordered, when she was filling my order the clerk said, "For the record, I admire you too."
For what?
Being capable to order tea? For smiling at Joe's antics? For looking like me and still going out?
Then suddenly my annoyance broke and it all struck me as funny. Plop me in a wheelchair and I'm the chicken soup for someone else's soul.
I hope they burn their tongue.
Joe came and joined me and we joked about something he'd seen in the gift shop and I made sure I knew what kind of treat he wanted from the glass cage. Bored, Joe went out to stroll through the booths of vendors at the front door. He promised to keep an eye on me to see when I got up to the counter so he could come back and help carry the drinks and treats.
The couple behind had fallen silent. She then offered to go get a pretzel to share, he said he didn't want to share one, if she wanted it go get it for herself. Then she said something I couldn't hear. He said that she had been sarcastic towards him for two days so why would he want to share something with her now.
I tried to edge myself away from their negativity but I couldn't get far enough away to stop their anger from flowing down from their lips over my shoulders. I glanced out the door and saw Joe making a face at me wearing large brightly coloured sunglasses. I waved and laughed out loud.
Then the angry guy behind said, pointing at me, "With all you've got you are never happy. Look at him, look at what he looks like, look at what he faces every day in his wheelchair, and yet he's happy. What's wrong with you? Why can't you be even a little like him?"
Everyone heard his outburst. He didn't care, he was angry. She stormed away.
I was mortified. Didn't know what to do with my eyes.
Neither did anyone else.
Then I was at the till and I ordered, when she was filling my order the clerk said, "For the record, I admire you too."
For what?
Being capable to order tea? For smiling at Joe's antics? For looking like me and still going out?
Then suddenly my annoyance broke and it all struck me as funny. Plop me in a wheelchair and I'm the chicken soup for someone else's soul.
I hope they burn their tongue.
Tuesday, July 24, 2007
Tearing Down
I take a breath. Pick up the phone. Make the call.
Twenty minutes later the call is done.
And so am I.
In many ways I'm a fortunate man, people come to listen to me teach and lecture, others pop by and read my random musings on this blog, I am often employed to listen, think then render an opinion. It's good. Growing up with messages of worthlessness it has always been a challenge to see myself as having even the slightest thought or idea that would be worth a penny. This has changed a lot in recent years and self confidence has snuck in the knapsack along with other trinkets that I carry through my day.
But there are those people who seem to set about bringing down others around them. People who 'smell' my vulnerability and pounce upon it with relish. I do all I can to avoid these people but life doesn't always cooperate and there are times when I have to buck up and do what needs to be done.
Now is one of those times.
Every conversation with this person leaves me feeling heavy and stupid and totally inadequate. I believe strongly that I have managed to keep the servitude out of my voice and respond with authority. But they know, I know they know, that they got to me.
Then I think about those in care, those whose vulnerablity isn't as well hidden as mine. I wonder about those who are drawn to this field. What are they in search of? What needs do the needs of others meet? I'm sure everyone knows some who are addicted to the subjugation of others - tearing apart someone else's esteem to use the parts to build their own.
My encounter was 20 minutes.
They are not so lucky.
So this is what I'm doing. I'm looking for all solutions for dealing with this situation with this person. I'm looking to see what I do that encourages such liberties,I'm looking to see what flaw exists in the character of the other. I want to be better prepared to protect my self, next time.
I want also to figure out how to teach people in care to deal with petty tyrants - the one's with acid on their breath. I've taight about physical abuse, and sexual abuse, but this is different. This kind of abuse is so subtle that it would look ridiculous put in writing on a complaint form. You can't document tones of voices and sighs of exasperation, and little knowing nods. All those non verbal way of calling someone stupid, all those insidious ways of predicting your failure, all those people who talk kindness but whos words cut. These are the people that are truly dangerous.
But what I can't yet do I can't yet teach.
One day though, one day.
Because I've got the chance to work with an expert.
Twenty minutes later the call is done.
And so am I.
In many ways I'm a fortunate man, people come to listen to me teach and lecture, others pop by and read my random musings on this blog, I am often employed to listen, think then render an opinion. It's good. Growing up with messages of worthlessness it has always been a challenge to see myself as having even the slightest thought or idea that would be worth a penny. This has changed a lot in recent years and self confidence has snuck in the knapsack along with other trinkets that I carry through my day.
But there are those people who seem to set about bringing down others around them. People who 'smell' my vulnerability and pounce upon it with relish. I do all I can to avoid these people but life doesn't always cooperate and there are times when I have to buck up and do what needs to be done.
Now is one of those times.
Every conversation with this person leaves me feeling heavy and stupid and totally inadequate. I believe strongly that I have managed to keep the servitude out of my voice and respond with authority. But they know, I know they know, that they got to me.
Then I think about those in care, those whose vulnerablity isn't as well hidden as mine. I wonder about those who are drawn to this field. What are they in search of? What needs do the needs of others meet? I'm sure everyone knows some who are addicted to the subjugation of others - tearing apart someone else's esteem to use the parts to build their own.
My encounter was 20 minutes.
They are not so lucky.
So this is what I'm doing. I'm looking for all solutions for dealing with this situation with this person. I'm looking to see what I do that encourages such liberties,I'm looking to see what flaw exists in the character of the other. I want to be better prepared to protect my self, next time.
I want also to figure out how to teach people in care to deal with petty tyrants - the one's with acid on their breath. I've taight about physical abuse, and sexual abuse, but this is different. This kind of abuse is so subtle that it would look ridiculous put in writing on a complaint form. You can't document tones of voices and sighs of exasperation, and little knowing nods. All those non verbal way of calling someone stupid, all those insidious ways of predicting your failure, all those people who talk kindness but whos words cut. These are the people that are truly dangerous.
But what I can't yet do I can't yet teach.
One day though, one day.
Because I've got the chance to work with an expert.
Monday, July 23, 2007
ARF!
It was so hot. We had stopped at one of the rest stops on I90 for a bathroom break and to restock our cold drinks. Joe had assembled the chair and then we headed in. After 'resting' at the stop we did a bit of shopping. I was bored in the line up so I told Joe I'd head back out to the car on my own. We checked to see who had the money to pay, I did so I passed it to him and then headed for the door.
They have automatic door openers that are well placed, easy to reach and that work so I was easily able to leave the building. As I rounded the corner I heard a dog begin to bark excitedly. We've had dogs for much of our lives and it is easy to tell the 'stay away or I'll bite you' bark from the 'hey, I'm excited give me a cookie' bark. Of course there are ranges in between, this was clearly one of the happy barks.
I love the ramps down from sidewalk to curb when the curb ends and the parking lot begins without a huge lip. This was a smooth transition and I let the car go and roll quickly down, using my gloved hands as breaks. The dog, barking, was looking straight at me with his front paws dancing.
He was in a chair. That's right a doggy wheelchair. Again, I'd seen them on television and in movies but never in real life. I'm not shy about this stuff so I wheeled on over. The dog, Ralphie as I came to know him, was bouncing now. The owners were smiling broadly at me. I asked them if it would be OK to pet their dog, they joked, "We were going to beg you to, it's the only thing that will shut him up now."
We talked a little bit and they told me that Ralphie goes nuts whenever he sees somebody in a wheelchair, "sometimes even a walker" they said. "he seems to think you're all one breed." Ralph wasn't really a dog of distinction and they confirmed my suspicion that he was just a mutt. He'd been hit by a car a few years earlier, they explained, and they had two options. Death or disability. The operation was costly but worth it. Ralphie adapted to the chair and while there are some considerations for toileting (I didn't ask) there was not much difference.
Now I'm sitting chatting with them and Ralphie has pulled his chair up beside mine and has rested his chin in my lap and is going into a trance while I pet his head. I know how to pet dogs, I miss petting dogs, this now is as much for me as him.
Joe comes out of the rest stop and sees us. He told me later that he couldn't believe his eyes. And came over to join us. We could have all talked forever but we had a long drive yet ahead of us. I bid farewell to Ralphie as we headed back to the car. He whined slightly.
I turned to them and asked what that was about, his excitement at the wheelchair and his obvious slight upset that I was leaving.
"I don't know," she said, "Sometimes he feels alone, even with us, I think."
Ralphie understands, in his doggy mind, about isolation even amongst those who love us. He understands the need for moments of community. I think this is the way we are all growing as disabled people. What we are beginning to understand. That as different as we are from one another, we are still all one breed.
Smart dog.
They have automatic door openers that are well placed, easy to reach and that work so I was easily able to leave the building. As I rounded the corner I heard a dog begin to bark excitedly. We've had dogs for much of our lives and it is easy to tell the 'stay away or I'll bite you' bark from the 'hey, I'm excited give me a cookie' bark. Of course there are ranges in between, this was clearly one of the happy barks.
I love the ramps down from sidewalk to curb when the curb ends and the parking lot begins without a huge lip. This was a smooth transition and I let the car go and roll quickly down, using my gloved hands as breaks. The dog, barking, was looking straight at me with his front paws dancing.
He was in a chair. That's right a doggy wheelchair. Again, I'd seen them on television and in movies but never in real life. I'm not shy about this stuff so I wheeled on over. The dog, Ralphie as I came to know him, was bouncing now. The owners were smiling broadly at me. I asked them if it would be OK to pet their dog, they joked, "We were going to beg you to, it's the only thing that will shut him up now."
We talked a little bit and they told me that Ralphie goes nuts whenever he sees somebody in a wheelchair, "sometimes even a walker" they said. "he seems to think you're all one breed." Ralph wasn't really a dog of distinction and they confirmed my suspicion that he was just a mutt. He'd been hit by a car a few years earlier, they explained, and they had two options. Death or disability. The operation was costly but worth it. Ralphie adapted to the chair and while there are some considerations for toileting (I didn't ask) there was not much difference.
Now I'm sitting chatting with them and Ralphie has pulled his chair up beside mine and has rested his chin in my lap and is going into a trance while I pet his head. I know how to pet dogs, I miss petting dogs, this now is as much for me as him.
Joe comes out of the rest stop and sees us. He told me later that he couldn't believe his eyes. And came over to join us. We could have all talked forever but we had a long drive yet ahead of us. I bid farewell to Ralphie as we headed back to the car. He whined slightly.
I turned to them and asked what that was about, his excitement at the wheelchair and his obvious slight upset that I was leaving.
"I don't know," she said, "Sometimes he feels alone, even with us, I think."
Ralphie understands, in his doggy mind, about isolation even amongst those who love us. He understands the need for moments of community. I think this is the way we are all growing as disabled people. What we are beginning to understand. That as different as we are from one another, we are still all one breed.
Smart dog.
Sunday, July 22, 2007
Oh Boy
ohboyohboyohboyohboyohboyohboy
I'm in New York City, it's early Sunday morning and I'm excited. We're going to meet our old friend Bobra Fyne for lunch. I can't wait. First we searched the internet to find a great vegetarian restaurant and second we're going to have a chance to really chat with someone we've known for a long time but seen seldomly.
We learned that a few months ago Bobra had to undergo serious surgery - for, um, women's problems - and that because of surgical complications she had a long recovery process. Well, that just ramps up our excitement about seeing her. We want to see her well, know that she's ok ... but there's something else.
Pause.
Recently we realized that there are three reasons that we know that we are long past middle age. Yep, we are 55 and that's only middle if we expect to make 110. Beyond age, there are other ways of knowing that youth is a thing remembered and that you are somewhere between dottering and drooling. For us ...
1) We got a paycheck in the mail and used it to pay our bills and decided to bank the rest of it. And we were excited about this.
2) The last cd we bought was from a rack in the drug store. Carly Simon's greatest hits for $4.99. And we were excited about this.
3) We found ourselves, yesterday, having a really interesting talk about bowel movements and sore joints and hearing loss. We know we're going to see Bobra and hear all about her time in the hospital and in recovery and ... and ... and we are excited about this.
Yes, we find discussing our various physical complaints, our dealings with doctors, our aging, fun!
Of course, I have the trump card ... anyone notice the wheelchair?
Bring on Bobra, I know she's got some good medical horror stories, I've saved a few up myself.
ohboyohboyohboyohboyohboyohboyohboy
I'm in New York City, it's early Sunday morning and I'm excited. We're going to meet our old friend Bobra Fyne for lunch. I can't wait. First we searched the internet to find a great vegetarian restaurant and second we're going to have a chance to really chat with someone we've known for a long time but seen seldomly.
We learned that a few months ago Bobra had to undergo serious surgery - for, um, women's problems - and that because of surgical complications she had a long recovery process. Well, that just ramps up our excitement about seeing her. We want to see her well, know that she's ok ... but there's something else.
Pause.
Recently we realized that there are three reasons that we know that we are long past middle age. Yep, we are 55 and that's only middle if we expect to make 110. Beyond age, there are other ways of knowing that youth is a thing remembered and that you are somewhere between dottering and drooling. For us ...
1) We got a paycheck in the mail and used it to pay our bills and decided to bank the rest of it. And we were excited about this.
2) The last cd we bought was from a rack in the drug store. Carly Simon's greatest hits for $4.99. And we were excited about this.
3) We found ourselves, yesterday, having a really interesting talk about bowel movements and sore joints and hearing loss. We know we're going to see Bobra and hear all about her time in the hospital and in recovery and ... and ... and we are excited about this.
Yes, we find discussing our various physical complaints, our dealings with doctors, our aging, fun!
Of course, I have the trump card ... anyone notice the wheelchair?
Bring on Bobra, I know she's got some good medical horror stories, I've saved a few up myself.
ohboyohboyohboyohboyohboyohboyohboy
Saturday, July 21, 2007
Abuse
It happened two days ago at Sobey's, our neighbourhood grocery store. It bothered me when it happened, but like a good soul, I let it go. If I took real offense everytime someone did something stupid or acted a little insensitive, I'd be in a constant tizzy. So, I dropped it, or tried to. I didn't even blog about it for fear of being thought petty. But it hasn't left me, still bothers me and last night I dreamed about it.
It's still there.
What happened was this. For about 6 months now I've been able to both push my wheelchair and the grocery cart at the same time. I use one of two different methods. In wide aisles I ride beside the cart and grasp it and shove it forward by gripping the side of the cart and shoving. Alternately, where it is more narrow, I roll behind it and shove it forward and simply follow along behind. It's taken me a while to get the knack of this and I'm kind of proud that I don't need assistance to make my way around the store. Joe can run off and get something while I take the cart with me, just like the days, pre-chair. More of my life reclaimed.
So, we were heading for the checkout tills and I noticed that Joe had only picked up one package of cresent rolls when we needed two. So he headed off to get another one and I began towards the till with the cart. I was very nearly there when a woman appeared out of nowhere and said, "Let me help you with that," reaching to grab my cart and take it to the till.
I was quite polite and said, "No, that's OK, I can do it myself."
She became almost, I don't know, angry. She grabbed the cart quite forcefully out of my hand saying, "It's good to help." She could see that she'd upset me so she almost slammed the cart up against the counter and strode off.
Her need to help me far outweighed my need for independance.
I don't know why but tears sprung to my eyes, I was really upset. I felt that I had been abused in some fundamental way that I didn't and still don't understand.
And I can't shake the feeling.
Yet, I fear I've done this same thing to people in my care several times over the years. That needs got mixed up.
And mine always won.
I am so deeply sorry.
Abuse of independance may not be illegal but I now know, it sure is wrong.
It's still there.
What happened was this. For about 6 months now I've been able to both push my wheelchair and the grocery cart at the same time. I use one of two different methods. In wide aisles I ride beside the cart and grasp it and shove it forward by gripping the side of the cart and shoving. Alternately, where it is more narrow, I roll behind it and shove it forward and simply follow along behind. It's taken me a while to get the knack of this and I'm kind of proud that I don't need assistance to make my way around the store. Joe can run off and get something while I take the cart with me, just like the days, pre-chair. More of my life reclaimed.
So, we were heading for the checkout tills and I noticed that Joe had only picked up one package of cresent rolls when we needed two. So he headed off to get another one and I began towards the till with the cart. I was very nearly there when a woman appeared out of nowhere and said, "Let me help you with that," reaching to grab my cart and take it to the till.
I was quite polite and said, "No, that's OK, I can do it myself."
She became almost, I don't know, angry. She grabbed the cart quite forcefully out of my hand saying, "It's good to help." She could see that she'd upset me so she almost slammed the cart up against the counter and strode off.
Her need to help me far outweighed my need for independance.
I don't know why but tears sprung to my eyes, I was really upset. I felt that I had been abused in some fundamental way that I didn't and still don't understand.
And I can't shake the feeling.
Yet, I fear I've done this same thing to people in my care several times over the years. That needs got mixed up.
And mine always won.
I am so deeply sorry.
Abuse of independance may not be illegal but I now know, it sure is wrong.
Friday, July 20, 2007
Talking Sex
This week I began teaching my second summer school course: Sex, Sexuality and Sex Education. Yesterday was the first day of the four days that we will meet and an interesting mix of people showed up from around Southern Ontario. We always begin that course with an introductory exercise.
Everyone gets a sheet of paper titled 'Find Someone Who' and then a list of 16 descriptors of people. Things like 'drove more than 20 miles to get here today' or 'can identify 5 parts of the male or female genitalia' and 'was told the facts of life by parents'. It's a fun way to mix people up, get them talking and really break the ice. We are going to spend 4 days together talking about sexuality, so we might as well begin to get comfortable with each other.
15 minutes after the exercise began and people were finding their seats again, I asked them which one was the hardest to find signatures for. "Told facts of life by parents" several called out. I then asked how many were indeed told the facts of life by parents. 4 hands went up in a room with more than 30 people in it. Not only that, these are people who are significantly younger than me. A generation different at least.
Odd, huh?
It's almost abnormal for us 'typicals' to be given sex education by parents. Yet I hear so often complaints by staff regarding the reluctance of parents with kids with disabilities to talk to thier kids about sex. They shake their heads and make the assumption that these damn parents are failing yet again in their duties to parent their kids. Further, they assume that the parents, by their reluctance to talk to their kids about sex are naturally opposed to the whole idea.
Whoa!
Why is it that we demand of people with disabilities what we don't demand of our selves? Made beds. Healthy diet. Cheerful attitude at all times. The list is endless.
But why too, do we demand of parents of kids with disabilities, what we do not expect from our own parents, or of ourselves when we parent? Why do we reserve our harshest judgements for moms and dads who are constantly tired from battles that most other parents never have to think of fighting - the right for their kid to go to school with others. Life's tough enough without the 'attitude' they get from staff whose expectation of those parents goes beyond reasonable and into the absurd.
A realistic view of what it is to be a parent will take us a long way I believe.
It's normal for parents to cease up at the idea of talking sex with their kids.
It's normal for kids to be horrified at the idea of talking sex with their parents.
Just as long at the job gets done, we're all cool.
Less blame, more action - please.
Everyone gets a sheet of paper titled 'Find Someone Who' and then a list of 16 descriptors of people. Things like 'drove more than 20 miles to get here today' or 'can identify 5 parts of the male or female genitalia' and 'was told the facts of life by parents'. It's a fun way to mix people up, get them talking and really break the ice. We are going to spend 4 days together talking about sexuality, so we might as well begin to get comfortable with each other.
15 minutes after the exercise began and people were finding their seats again, I asked them which one was the hardest to find signatures for. "Told facts of life by parents" several called out. I then asked how many were indeed told the facts of life by parents. 4 hands went up in a room with more than 30 people in it. Not only that, these are people who are significantly younger than me. A generation different at least.
Odd, huh?
It's almost abnormal for us 'typicals' to be given sex education by parents. Yet I hear so often complaints by staff regarding the reluctance of parents with kids with disabilities to talk to thier kids about sex. They shake their heads and make the assumption that these damn parents are failing yet again in their duties to parent their kids. Further, they assume that the parents, by their reluctance to talk to their kids about sex are naturally opposed to the whole idea.
Whoa!
Why is it that we demand of people with disabilities what we don't demand of our selves? Made beds. Healthy diet. Cheerful attitude at all times. The list is endless.
But why too, do we demand of parents of kids with disabilities, what we do not expect from our own parents, or of ourselves when we parent? Why do we reserve our harshest judgements for moms and dads who are constantly tired from battles that most other parents never have to think of fighting - the right for their kid to go to school with others. Life's tough enough without the 'attitude' they get from staff whose expectation of those parents goes beyond reasonable and into the absurd.
A realistic view of what it is to be a parent will take us a long way I believe.
It's normal for parents to cease up at the idea of talking sex with their kids.
It's normal for kids to be horrified at the idea of talking sex with their parents.
Just as long at the job gets done, we're all cool.
Less blame, more action - please.
Thursday, July 19, 2007
Learning Love
The progress is painfully slow. But they are happy with it. As we talk she looks at him and grins a big happy grin, he looks over at her and puts his hand gently over hers, for just a second, then removes it. We continue to talk and they explain what's going on in their relationship. What each is learning to do to get along well with the other.
Having grown up with disabilities, neither of them had the opportunities to learn the ways of love and the rules of relationship. Living in same sex environments gives one precious little opportuntity to practice flirting, dating and enchating conversation.
I remember reading an article on a scientific animal study (though I don't really approve of animal studies) and in that study they took new borne mammals from the parents and the troop. The infant males were placed in one area, the infant females in another, they never interacted cross gender, they never saw their parents or indeed any member of their species, interact cross gender.
When they were grown they were placed together and researchers could see how much of sexual behaviour was learned and how much was instictual. What they found was that all those who went through the experiment had their sexuality destroyed. They had lost the art of heterosocial activity with some tragic consequences. The article ended by making a huge mistake. They made a claim.
"This of course would never happen within the human community."
Um, yeah, it did.
And I see the results of that separation in front of me. Two people tenuously working their way back to each other, back to the desire for human touch and comfort. Two people who are willing to work through their fears, their lact of experience, their sense of personal damage - just to be with one another.
They set groundrules in these sessions with their counsellor and talk about where they are and what they need to learn, to do, to change, in order to be better in relationship with one another. I had been there at the beginning of this process and helped to design it, now I'm here meeting them to review their process and see how it's going.
It's going.
And their acheivement shows in the light in her eyes.
And in the gentle touch of his hand on hers.
Having grown up with disabilities, neither of them had the opportunities to learn the ways of love and the rules of relationship. Living in same sex environments gives one precious little opportuntity to practice flirting, dating and enchating conversation.
I remember reading an article on a scientific animal study (though I don't really approve of animal studies) and in that study they took new borne mammals from the parents and the troop. The infant males were placed in one area, the infant females in another, they never interacted cross gender, they never saw their parents or indeed any member of their species, interact cross gender.
When they were grown they were placed together and researchers could see how much of sexual behaviour was learned and how much was instictual. What they found was that all those who went through the experiment had their sexuality destroyed. They had lost the art of heterosocial activity with some tragic consequences. The article ended by making a huge mistake. They made a claim.
"This of course would never happen within the human community."
Um, yeah, it did.
And I see the results of that separation in front of me. Two people tenuously working their way back to each other, back to the desire for human touch and comfort. Two people who are willing to work through their fears, their lact of experience, their sense of personal damage - just to be with one another.
They set groundrules in these sessions with their counsellor and talk about where they are and what they need to learn, to do, to change, in order to be better in relationship with one another. I had been there at the beginning of this process and helped to design it, now I'm here meeting them to review their process and see how it's going.
It's going.
And their acheivement shows in the light in her eyes.
And in the gentle touch of his hand on hers.
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