They all thought I was crazy, but I insisted because I was sure that I'd figured it out correctly. We hit DisneyWorld today taking a 'special bus' over to the park. On the bus we had both my scooter AND my manual chair. There were two reasons, one selfish, one selfless, that I wanted my regular chair.
Selfishly, I have to admit to finding the scooter a bit isolating. In my power chair I can sit at a table with everyone else, in the scooter it feels like the front tire is a barrier between me and others. I like to get out of the scooter and into my manual and sit with everyone else.
Selflessly, I figured we could use the wheelchair as a carry-all to hold bags and the piles of stuff that you gather in places like this. Too, I figured Ruby would tire and could use it, Joe would be able to rest while we waited for others to ride tea cups and flying elephants. I know a wheelchair to be a wonderful assistive devise for me, why wouldn't it be for others.
It turned out exactly like I thought. Everyone used the chair at different times. At one point Mike said to me, I thought that bringing the chair would be a bother but thank heavens we had it. We had a place for people to sit while watching shows and parades and marching bands. When it was hot we could pull under a tree and create a cool place for people to catch their breath.
I love my chair, and now, I might have to wrestle others to get it back!
Thursday, April 30, 2009
Wednesday, April 29, 2009
Wall Flower
Well, I have decided what the very, very best adapted device in the world is ... yep, after trying a reacher and a power chair, grab bars and tall toilets, I give the award to the basket that they put on scooters so that when you smash into a wall, the back of an elevator or a post, it simply collapses. Man, I can't believe I don't have whiplash. This soooter is fast but it also is a little tricky to operate. I think I might have scared the shit out of our neighbour across the hall when I tried to back into my room last night and instead careened at breakneck speed into their door. There I was making nice with their door and my little basket folded neatly up and out of the way.
I'm guessing that, since there is a collapseable basket, running into walls is a fairly common experience for scooter users. Wild.
Last night, after arriving at our hotel and going for a swim, we all went to dinner. Joe and I got there early and I was trying to back my scooter up against the wall to be out of the way. I noticed that everyone in there noticed my scooter. But as I was having difficulty with getting it parked just right, I then noticed that everyone was faux driving with me. You know how when you are the passenger you sometimes hit the break? Well people were leaning forward with me, leaning to the side and having that 'oh no you're going to hit the ... oh you did hit the wall' look on their face.
But I got it parked ... I must say, a huge group effort!
I'm guessing that, since there is a collapseable basket, running into walls is a fairly common experience for scooter users. Wild.
Last night, after arriving at our hotel and going for a swim, we all went to dinner. Joe and I got there early and I was trying to back my scooter up against the wall to be out of the way. I noticed that everyone in there noticed my scooter. But as I was having difficulty with getting it parked just right, I then noticed that everyone was faux driving with me. You know how when you are the passenger you sometimes hit the break? Well people were leaning forward with me, leaning to the side and having that 'oh no you're going to hit the ... oh you did hit the wall' look on their face.
But I got it parked ... I must say, a huge group effort!
Tuesday, April 28, 2009
A Great Way to Start
What a great way to start a vacation. Before we left for Florida I had been booked to do a short talk to graduating students from Humber College. I do this for free because I enjoy the opportunity to speak to students who are just starting out in their career. They all looked so young and eager.
I remember young and eager.
I've given up on young but I still aspire to eager.
I sat in front of the computer on Sunday putting together a few stories to tell them, some advice to give them, "a little rah rah and a little ah ha". They vary from year to year, last years crop was quiet as I spoke, this year they were up and ready to laugh. It was fun.
Part of me realized that this is the first generation of students who will be working entirely in the community. There are no more institutions, no more locked wards ... these kids have inherited the community in the same way the people they will work with have finally acheived community. They will have a different walk in service than I did. I was walking from the institution, they will have the ultimate privilege of walking to inclusion. They will tell different stories than I have told. They will go to different places.
Several of the students came up and shook my hand. They said they were honoured to meet me ... trust me, the honour was all mine.
I remember young and eager.
I've given up on young but I still aspire to eager.
I sat in front of the computer on Sunday putting together a few stories to tell them, some advice to give them, "a little rah rah and a little ah ha". They vary from year to year, last years crop was quiet as I spoke, this year they were up and ready to laugh. It was fun.
Part of me realized that this is the first generation of students who will be working entirely in the community. There are no more institutions, no more locked wards ... these kids have inherited the community in the same way the people they will work with have finally acheived community. They will have a different walk in service than I did. I was walking from the institution, they will have the ultimate privilege of walking to inclusion. They will tell different stories than I have told. They will go to different places.
Several of the students came up and shook my hand. They said they were honoured to meet me ... trust me, the honour was all mine.
Monday, April 27, 2009
Where Did That Come From?
I'd fallen out of the habit of church. During the winter it's impossible to really get into the church with the wheelchair. The church is located in a really residential area and often the plows simply don't get much of it removed. So while Joe went I'd stay home. I'd make a big pot of tea, curl up on the couch under my favourite blanket and read. This little ritual became more and more important to me. But when Joe asked if I'd come to church on Sunday, I could hear in his voice that he'd like me there. So I agreed. Reluctantly, I'll admit.
We got there very early so that we could get me in, get the car parked and not be rushing about. I don't like hurry as I find it gets in the way of so much. As the service began I enjoyed the whole thing. The music, the pagentry, being read to ... all of it seemed to be exactly what I needed. Then it came time for prayers. I am a regular prayer, I believe in prayer ... so why is it that when someone asks me to bow my head and pray, I never can. It seems a bit contrived, like being forced to chat with Grandma while my mom goes for a pee.
So I bowed my head and thought about what to pray for ... nothing came. Then, suddenly, from somewhere deep in me came a prayer I tried to stop. It was a prayer for the two guys who had ridiculed me yesterday. It was a prayer for them to discover kindness. It was a prayer for those around them, for their kids, their wives, their friends, their family. We, each of us, need people in our lives with the gifts of kindness and compassion. Some day, some one will need something from those guys, something that requires a heart that works. I prayed that each of them, I could picture each face, would learn gentleness so that their lips could one day kiss away an accidental fall or even bruised feelings from a bullies taunt.
When I was done I wondered, 'Where did that come from?' I don't know if my prayer will ever be answered but, even so ... the idea that it might gave me hope.
We got there very early so that we could get me in, get the car parked and not be rushing about. I don't like hurry as I find it gets in the way of so much. As the service began I enjoyed the whole thing. The music, the pagentry, being read to ... all of it seemed to be exactly what I needed. Then it came time for prayers. I am a regular prayer, I believe in prayer ... so why is it that when someone asks me to bow my head and pray, I never can. It seems a bit contrived, like being forced to chat with Grandma while my mom goes for a pee.
So I bowed my head and thought about what to pray for ... nothing came. Then, suddenly, from somewhere deep in me came a prayer I tried to stop. It was a prayer for the two guys who had ridiculed me yesterday. It was a prayer for them to discover kindness. It was a prayer for those around them, for their kids, their wives, their friends, their family. We, each of us, need people in our lives with the gifts of kindness and compassion. Some day, some one will need something from those guys, something that requires a heart that works. I prayed that each of them, I could picture each face, would learn gentleness so that their lips could one day kiss away an accidental fall or even bruised feelings from a bullies taunt.
When I was done I wondered, 'Where did that come from?' I don't know if my prayer will ever be answered but, even so ... the idea that it might gave me hope.
Sunday, April 26, 2009
Fingers
I don't quite know how to begin this post. It's going to sound like whining, perhaps, and I don't want that. I want to actually say something, but what I want to say may get lost in the story. Well, here goes ...
We had left the theatre and were driving home. Joe decided to cruise up Yonge Street so he turned north to find a wall of traffic. It is said that Canada has two seasons, Winter and Construction, and sure enough on the first really wonderfully warm and sunny day, there was CONSTRUCTION. We didn't care. The windows were down, we were talking about the Opera which we had just seen at the movie theatre. A lazy summer day, in no rush.
Everyone around us had their windows down too and many had their radios blasting so that bits of music burst into the car, mostly an unwelcome intrusion. I suddenly noticed two guys in a muscle car, primarily because they did what they could to catch my attention. The one in the passenger seat took the 'Victory' fingers and pointed first and his eyes, then at mine. He wanted to make sure that I knew he was looking at me. Then he took his forefinger and touched under the point of his nose and pushed up in the universal 'piggy' gesture.
There was a break in traffic in our lane and we pulled ahead. I was relieved. But we slowed again and I could see that the other lane was easing and I simply knew they'd catch up and surely they did. As they pulled by both driver and passenger were looking at me with their noses pushed up. When they saw me, they laughed, hard.
Again, we pulled ahead. As the lanes had collapsed into one, I pointed to the lane on the right and asked Joe to head into it and then take the first turn off Yonge Street. I desperately didn't want to see them again. More accurately, I didn't want them to see me again. Joe asked why and I simply said, 'There's a couple of guys making fun of me in a car back there.' 'Oh,' was all Joe said and we turned off and headed up Church Street instead.
"Sometimes it takes a mammoth act of will not to be hurt by people," I said to Joe. 'I know,' he said. And we were done with it. He's seen it thousands of times before, I've experienced it even more. There was no need for talking. And I did let it go. We came home, chatted with people in the lobby, made dinner, called friends on the phone, did what we normally did. It was all but forgotten.
This morning in bed thinking about a blog for the day, I remembered the two guys in the car. I remembered the mammoth act of will. That people can be cruel is of no great surprise. Learning how to 'be different' in a world where people can torment difference is an amazing skill. I once knew a large woman who simply stopped going out. She just stopped. She was tired of it. I once knew a man with Down Syndrome who simply stopped going out. He had grown tired of it.
I do not wish to give up my right to access the world. I do not wish anyone to remove themselves from public view because of how the public views them. It is of no comfort to think that, as I was out several times yesterday, that hundreds of people did not stare at me, that hundreds did not make piggy faces. The benign kindness of strangers does not and can not make up for the targetted cruelty of others. I had to go somewhere deep in myself, I had to go to that place where I store up self esteem and self worth and make a withdrawl. I had to hold on to my own sense of value, my own sense of who I am, my own conviction of worth.
How others cope, I do not know. Me, I have to hold me and cradle me. Me, I have to nurse my own wounds. Joe knows that his comfort only makes the situation worse, because though it isn't what it seems, it seems like pity. No, it must come from me. I hereby thank every single person who has given me the store of self worth that I keep in reserve. All those who have contributed to my sense of self and my sense of worth and purpose, I thank you. Deeply.
Because I needed what you gave me, and if I didn't have it, I tell you truthfully ... I'd be in danger of deciding never, ever to go out again.
We had left the theatre and were driving home. Joe decided to cruise up Yonge Street so he turned north to find a wall of traffic. It is said that Canada has two seasons, Winter and Construction, and sure enough on the first really wonderfully warm and sunny day, there was CONSTRUCTION. We didn't care. The windows were down, we were talking about the Opera which we had just seen at the movie theatre. A lazy summer day, in no rush.
Everyone around us had their windows down too and many had their radios blasting so that bits of music burst into the car, mostly an unwelcome intrusion. I suddenly noticed two guys in a muscle car, primarily because they did what they could to catch my attention. The one in the passenger seat took the 'Victory' fingers and pointed first and his eyes, then at mine. He wanted to make sure that I knew he was looking at me. Then he took his forefinger and touched under the point of his nose and pushed up in the universal 'piggy' gesture.
There was a break in traffic in our lane and we pulled ahead. I was relieved. But we slowed again and I could see that the other lane was easing and I simply knew they'd catch up and surely they did. As they pulled by both driver and passenger were looking at me with their noses pushed up. When they saw me, they laughed, hard.
Again, we pulled ahead. As the lanes had collapsed into one, I pointed to the lane on the right and asked Joe to head into it and then take the first turn off Yonge Street. I desperately didn't want to see them again. More accurately, I didn't want them to see me again. Joe asked why and I simply said, 'There's a couple of guys making fun of me in a car back there.' 'Oh,' was all Joe said and we turned off and headed up Church Street instead.
"Sometimes it takes a mammoth act of will not to be hurt by people," I said to Joe. 'I know,' he said. And we were done with it. He's seen it thousands of times before, I've experienced it even more. There was no need for talking. And I did let it go. We came home, chatted with people in the lobby, made dinner, called friends on the phone, did what we normally did. It was all but forgotten.
This morning in bed thinking about a blog for the day, I remembered the two guys in the car. I remembered the mammoth act of will. That people can be cruel is of no great surprise. Learning how to 'be different' in a world where people can torment difference is an amazing skill. I once knew a large woman who simply stopped going out. She just stopped. She was tired of it. I once knew a man with Down Syndrome who simply stopped going out. He had grown tired of it.
I do not wish to give up my right to access the world. I do not wish anyone to remove themselves from public view because of how the public views them. It is of no comfort to think that, as I was out several times yesterday, that hundreds of people did not stare at me, that hundreds did not make piggy faces. The benign kindness of strangers does not and can not make up for the targetted cruelty of others. I had to go somewhere deep in myself, I had to go to that place where I store up self esteem and self worth and make a withdrawl. I had to hold on to my own sense of value, my own sense of who I am, my own conviction of worth.
How others cope, I do not know. Me, I have to hold me and cradle me. Me, I have to nurse my own wounds. Joe knows that his comfort only makes the situation worse, because though it isn't what it seems, it seems like pity. No, it must come from me. I hereby thank every single person who has given me the store of self worth that I keep in reserve. All those who have contributed to my sense of self and my sense of worth and purpose, I thank you. Deeply.
Because I needed what you gave me, and if I didn't have it, I tell you truthfully ... I'd be in danger of deciding never, ever to go out again.
Saturday, April 25, 2009
That Word
You could cut yourself on the sharpness in her tone of voice. When we first met her we found it difficult to establish eye contact with her - she looks at a person with a frank evaluation in her eye, it's disconcerting. Her face looks like it was constructed from bars, booze and brawls. She is not pretty in the conventional sense but she has incredible presence. Over time she has come to first like, then trust both Joe and I. We felt honoured the first time she smiled when greeting us. Much ground had been covered.
She is not liked. She is feared. People approach her seldomly, always carefully, mostly only because they have too. She is surprisingly small for someone who takes up so much space. Wearing only golf style shirts and jeans, fashion seems to be of no interest to her. She is often seen smoking just outside the door, taking in smoke with a desperation that is alarming. You don't talk to her when she is smoking.
Her husband is a tough guy but a softer touch than she. She always joked about me running him over in my wheelchair, "Aim for his feet" she'd say. A couple of weeks ago we saw her looking frail, tired, frightened. I asked what was up. Her husband has been struck, suddenly, with a serious illness. It will be disabling, perhaps, lethal, most likely. He had to go to the hospital for immediate treatment. She is alone and worried. Visiting him in the evening, worried about him in the day.
They work hard. She works hard. Everything they have they worked for. Everything she has, she worked for. Her hands are rough from work, her fingers tough from toil. She takes no time off. She can't. They need the money. She goes after work. Tired. But she goes.
She looked at me with her unflinching eyes, "That's what you do when you love someone." I nodded, blinking away tears.
Because when she said that word, I swear, I have never seen anyone more powerfully beautiful.
She is not liked. She is feared. People approach her seldomly, always carefully, mostly only because they have too. She is surprisingly small for someone who takes up so much space. Wearing only golf style shirts and jeans, fashion seems to be of no interest to her. She is often seen smoking just outside the door, taking in smoke with a desperation that is alarming. You don't talk to her when she is smoking.
Her husband is a tough guy but a softer touch than she. She always joked about me running him over in my wheelchair, "Aim for his feet" she'd say. A couple of weeks ago we saw her looking frail, tired, frightened. I asked what was up. Her husband has been struck, suddenly, with a serious illness. It will be disabling, perhaps, lethal, most likely. He had to go to the hospital for immediate treatment. She is alone and worried. Visiting him in the evening, worried about him in the day.
They work hard. She works hard. Everything they have they worked for. Everything she has, she worked for. Her hands are rough from work, her fingers tough from toil. She takes no time off. She can't. They need the money. She goes after work. Tired. But she goes.
She looked at me with her unflinching eyes, "That's what you do when you love someone." I nodded, blinking away tears.
Because when she said that word, I swear, I have never seen anyone more powerfully beautiful.
Friday, April 24, 2009
L. W. A. V.
We were driving along the QEW on the way home and saw a huge sign over a huge lot that said 'Liberty Wheelchair Accessible Vans'. We are considering buying such a van so, on impulse, I pulled out the cell phone and asked the operator for 'Liberty Wheelchair Accessible Vans' ... she said there was no number in that city for 'Liberty Wheelchair Accessible Vans'. I said, 'Odd, cause I just drove by it.' She said, and I'm not kidding here, 'What kind of business would it be?' I truly didn't know how to answer except to say, 'They sell Wheelchair Accessible Vans.' And just who is buried in Grant's Tomb?
So I looked them up on the net and found their number. I called them and left my number with a nice lady there who assured me that there was a company called Liberty and that they sold Wheelchair Accessible Vans. The salesguy called me and we talked vans and I asked questions. He sounded like someone comfortable in his own skin, someone comfortable with where he was in the world. He sounded like a nice guy. So, when he found out that I can still independantly get into the passenger seat of a van, he stopped the conversation with, 'You don't need what we are selling.'
Then he went on to explain how to get exactly what we need at maybe thousands and thousands of dollars less. I took notes as he explained exactly how I can do what I needed to do. He looked up phone numbers for me. He gave me names of people to call. It was like it was his personal mission to make sure that everything went well for me.
Then a few minutes after we'd hung up he called back. He had just remembered about a couple of programmes that he thought I should know about. Again, I took notes. He told me to call him back if I had further questions.
All knowing that I wasn't a sale and that I wouldn't be a customer. So my hat's off to the guy from Liberty. It's nice to be reminded that there are just plain good people in the world. It's nice to be reminded that it's possible for people to have good ethics and a solid character.
All that and a nice voice too.
So I looked them up on the net and found their number. I called them and left my number with a nice lady there who assured me that there was a company called Liberty and that they sold Wheelchair Accessible Vans. The salesguy called me and we talked vans and I asked questions. He sounded like someone comfortable in his own skin, someone comfortable with where he was in the world. He sounded like a nice guy. So, when he found out that I can still independantly get into the passenger seat of a van, he stopped the conversation with, 'You don't need what we are selling.'
Then he went on to explain how to get exactly what we need at maybe thousands and thousands of dollars less. I took notes as he explained exactly how I can do what I needed to do. He looked up phone numbers for me. He gave me names of people to call. It was like it was his personal mission to make sure that everything went well for me.
Then a few minutes after we'd hung up he called back. He had just remembered about a couple of programmes that he thought I should know about. Again, I took notes. He told me to call him back if I had further questions.
All knowing that I wasn't a sale and that I wouldn't be a customer. So my hat's off to the guy from Liberty. It's nice to be reminded that there are just plain good people in the world. It's nice to be reminded that it's possible for people to have good ethics and a solid character.
All that and a nice voice too.
Thursday, April 23, 2009
A Disturbing Read
Women are not raped because they are women. Women are raped because there are rapists.
Children are not abused because they are children. Children are abused because there are abusers.
People with disabilities are not victimized because they have disabilities. People with disabilities are victimized because there are victimizers.
Feminist women worked hard towards the concept of blaming the perpetrator rather than blaming the victim. This concept is hard won even those it's truth is obvious. One of the interesting facts about abuse is best learned from the following question: What is the single greatest predictor that you will be sexually victimized?
You. Not people with disabilities, not that woman over there, not that kid down the street ... You. What is the single most important factor that raises your likelihood of abuse? Of course, you know it isn't your clothing, it isn't time of day, it isn't deportment.
What is it?
Nearness to a perpetrator.
Often when I do presentations regarding the victimization of people with disabilities I get disbelieving looks. Looks that say 'who would want to sexually victimize them?' Talk about disbelief mixed with extreme prejudice!
Well, there is an article I'd like you to read, it was published a few days ago by a friend of mine, Dr. Dick Sobsey ... and I ask you to take the time and head over and read about real world dangers for people with disabilities ...
You will find the article here.
Children are not abused because they are children. Children are abused because there are abusers.
People with disabilities are not victimized because they have disabilities. People with disabilities are victimized because there are victimizers.
Feminist women worked hard towards the concept of blaming the perpetrator rather than blaming the victim. This concept is hard won even those it's truth is obvious. One of the interesting facts about abuse is best learned from the following question: What is the single greatest predictor that you will be sexually victimized?
You. Not people with disabilities, not that woman over there, not that kid down the street ... You. What is the single most important factor that raises your likelihood of abuse? Of course, you know it isn't your clothing, it isn't time of day, it isn't deportment.
What is it?
Nearness to a perpetrator.
Often when I do presentations regarding the victimization of people with disabilities I get disbelieving looks. Looks that say 'who would want to sexually victimize them?' Talk about disbelief mixed with extreme prejudice!
Well, there is an article I'd like you to read, it was published a few days ago by a friend of mine, Dr. Dick Sobsey ... and I ask you to take the time and head over and read about real world dangers for people with disabilities ...
You will find the article here.
Wednesday, April 22, 2009
Counting Sleeps
Only 5 more sleeps. Then we go on vacation. Joe and I don't vacation. We grab a weekend here and there, but we don't travel for fun, stay in hotels for liesure. But we've decided it's time to have some time off. We are heading down to the Mouse House in Florida with Mike, Marissa and baby Ruby. She's moving on towards three and is at the age where wonder is still completely possible.
We are staying at a huge hotel complete with eight swimming pools, a dozen restaurants and a thousand other amenities. On my way home from our lecture trip to New Jersey and Connecticiut I thought about that huge hotel, that huge park. I thought about my travel wheelchair and my power chair at home. Quickly so I didn't have time to second guess myself, I grabbed the phone and dialled. Given the number, I dialed again.
I asked for the hotel Concierge. I've rarely used Concierge services beyond directions to a location. I explained to a pleasant sounding woman that I'm coming down for a week long stay, I'm a wheelchair user, I'd like to have a power chair or electric scooter waiting for me, was that possible. Turns out she's arranged this before, they have a company that the hotel deals with, she'll be back to me. She called back and asked questions, after apologies for their personal nature, about height and weight.
When we pull in to the hotel, I'm going to have an 'executive scooter' waiting for me. An 'executive scooter' is one that can carry a higher weight capacity. I did it all so completely coldly. I don't like discussing my body specifics with strangers, but I simply didn't care. I want to roll around where I want to roll around. I don't want to feel at all like by being pushed, I'm a drag.
I know that the 'ability to have a disability' includes a new skill set. I know that to live well with a disability there are things you need to give up in order to fully get what you need. Some of them are simple adaptions, some are a little more profound.
But whatever, I've got me an 'executive' seat from which to view my vacation. How cool is that?
We are staying at a huge hotel complete with eight swimming pools, a dozen restaurants and a thousand other amenities. On my way home from our lecture trip to New Jersey and Connecticiut I thought about that huge hotel, that huge park. I thought about my travel wheelchair and my power chair at home. Quickly so I didn't have time to second guess myself, I grabbed the phone and dialled. Given the number, I dialed again.
I asked for the hotel Concierge. I've rarely used Concierge services beyond directions to a location. I explained to a pleasant sounding woman that I'm coming down for a week long stay, I'm a wheelchair user, I'd like to have a power chair or electric scooter waiting for me, was that possible. Turns out she's arranged this before, they have a company that the hotel deals with, she'll be back to me. She called back and asked questions, after apologies for their personal nature, about height and weight.
When we pull in to the hotel, I'm going to have an 'executive scooter' waiting for me. An 'executive scooter' is one that can carry a higher weight capacity. I did it all so completely coldly. I don't like discussing my body specifics with strangers, but I simply didn't care. I want to roll around where I want to roll around. I don't want to feel at all like by being pushed, I'm a drag.
I know that the 'ability to have a disability' includes a new skill set. I know that to live well with a disability there are things you need to give up in order to fully get what you need. Some of them are simple adaptions, some are a little more profound.
But whatever, I've got me an 'executive' seat from which to view my vacation. How cool is that?
Tuesday, April 21, 2009
Greatest Show On Earth
For the past year or so, Joe and I have added 'museums' to our list of things to do in a city or town that we are weekending in. I know it should have been an obvious choice of activity but it never was for us. On one of our trips to the UK we got hooked on these little excusions into the past. I had checked on the computer and the 'Barnum Museum' was close to where we spent our weekend. On Sunday, after laundry, we headed the 20 or so miles to visit. All we knew of Barnum was the Circus and the famous quote 'there's a sucker born every minute.'
I didn't expect a parallel experience of disability history. And I should have, had I thought about the unholy marriage of the Circus and Freak Shows. The whole first floor of the museum was dedicated to various 'Human Oddities' ... Bearded Ladies, small people, tall people, fat people, disabled people. They were all there, shown in context with Barum's ride to the top of the entertainment world. What was also there was documentation of what Barnum paid these folk. And the fact that their pay grew with their popularity. He never 'owned' any of them, he was anti-slavery and wanted no part of one human owning another.
There was one row of pictures that was quite astonishing. Pictures of many of the 'oddities' that were beautifully posed and expensively mounted. The faces looked out with a sense of pride and defiance. Together they made more than a collection of strange people, they made a community of difference.
I simply do not know how to think of these images or this experience. Years ago I heard a disability academic talk about 'freak shows' as offering employment, money, companionship and most importantly freedom from institutionalization. I hear other voices condemning the shows for being what they were - giving the normal the opportuntity to gawk at the different. As I looked at the pictures, I wondered if Barnam was exploiting those with disabilities or differences, or if he was exploiting the 'norms' horrified fascination with the 'odds'.
It would have been wonderful if the museum had had the courage to address this issue in some way, to put in context how the lives of those who made Barnum rich were affected for good or for ill. We learned really very little about any of these people, they were there in the museum because they were there in his life.
Neither of us knew how to think about the experience. What sayst you all? Were there up sides to the Freak Show? Or am I foolish for even asking?
I didn't expect a parallel experience of disability history. And I should have, had I thought about the unholy marriage of the Circus and Freak Shows. The whole first floor of the museum was dedicated to various 'Human Oddities' ... Bearded Ladies, small people, tall people, fat people, disabled people. They were all there, shown in context with Barum's ride to the top of the entertainment world. What was also there was documentation of what Barnum paid these folk. And the fact that their pay grew with their popularity. He never 'owned' any of them, he was anti-slavery and wanted no part of one human owning another.
There was one row of pictures that was quite astonishing. Pictures of many of the 'oddities' that were beautifully posed and expensively mounted. The faces looked out with a sense of pride and defiance. Together they made more than a collection of strange people, they made a community of difference.
I simply do not know how to think of these images or this experience. Years ago I heard a disability academic talk about 'freak shows' as offering employment, money, companionship and most importantly freedom from institutionalization. I hear other voices condemning the shows for being what they were - giving the normal the opportuntity to gawk at the different. As I looked at the pictures, I wondered if Barnam was exploiting those with disabilities or differences, or if he was exploiting the 'norms' horrified fascination with the 'odds'.
It would have been wonderful if the museum had had the courage to address this issue in some way, to put in context how the lives of those who made Barnum rich were affected for good or for ill. We learned really very little about any of these people, they were there in the museum because they were there in his life.
Neither of us knew how to think about the experience. What sayst you all? Were there up sides to the Freak Show? Or am I foolish for even asking?
Monday, April 20, 2009
Maybe
We watched it because we were afforded no option. Sitting in a bar on a Saturday afternoon you are going to watch sports. As we were only a few miles out of New York City it was no surprise that the bar was full of Yankee fans. Well, the Yankees didn't do well. When we left the bar they were 10 runs behind. I don't know sports well but I know enough to spot a sound drubbing. The other patrons in the bar were hurling insults at the screen, when they didn't have their faces burried in their hands.
Sunday morning we were sitting in the lobby while the maid cleaned the room. A group of guys were sitting in the area next to us and talking about the game the previous evening. All of them were still proudly wearing something with the Yankee's logo on it. After complaining about the performance one of them said, "It was like watching a team from the Special Olympics!"
One of the other guys said, "Hey!" I turned to look but wasn't noticed. "You know Obama said something like that when he first got in office, he made some stupid joke. He apologized for it. He's a good guy, if he thinks it's wrong then we should think about it. I did and I think it isn't funny, it's mean."
"But I didn't mean anything by it," the originator of the comment said defensively.
"Yeah, but it's still mean."
"Maybe."
"Maybe."
And they went on. I sat there giving us a 'thumbs up' on that one. Maybe we are making inroads. Maybe people are beginning to think a little more about the language they use in reference to people with disabilities.
Maybe.
Maybe.
Sunday morning we were sitting in the lobby while the maid cleaned the room. A group of guys were sitting in the area next to us and talking about the game the previous evening. All of them were still proudly wearing something with the Yankee's logo on it. After complaining about the performance one of them said, "It was like watching a team from the Special Olympics!"
One of the other guys said, "Hey!" I turned to look but wasn't noticed. "You know Obama said something like that when he first got in office, he made some stupid joke. He apologized for it. He's a good guy, if he thinks it's wrong then we should think about it. I did and I think it isn't funny, it's mean."
"But I didn't mean anything by it," the originator of the comment said defensively.
"Yeah, but it's still mean."
"Maybe."
"Maybe."
And they went on. I sat there giving us a 'thumbs up' on that one. Maybe we are making inroads. Maybe people are beginning to think a little more about the language they use in reference to people with disabilities.
Maybe.
Maybe.
Sunday, April 19, 2009
You Know
I was on wooden floor, I gave myself a hard push and sat back. I rolled, glided along before gently coming to a stop. Praise be.
The day I left on this trip, first New Jersey then Connecticut, I had an appointment for my wheelchair to have a spring cleaning. My chair gets used a lot, it travels a lot, it carries a lot. Over time I can feel the wheels gumming up, crud gathering around the ball bearings, fatigue sinking into it's frame. A couple times a year I get the wheelchair people to come and check it over and spruce it up.
They arrived way late for the appointment, two very tall boys came to take the chair to fix up. They looked like brothers, but weren't, they were beanpoles who looked about three days older than sperm. As the main guy folded up the chair to take it out, I felt this real twinge. I was trusting this kid with my mobility. I was going on a trip in minutes, I started to change my mind just as he looked up at me and said, 'I know.'
That's all.
'I know.'
I let the chair go. Joe arrived a few minutes later and told me he'd seen the two guys with the chair. They'd just taken it out by the elevator where there was room to work. One of the wheels was off and ... I asked him to stop. I didn't need to know.
I worried over the chair like it was flesh and blood. A few minutes later the chair was back and the main guy was explaining what they did and what they found. The back wheels were fine, the front ones were the one's that needed cleaning. They fixed it so it folded more easily. He spoke with precision, care and even respect for the work he'd done with the chair.
Before they left I asked them how they got into wheelchair repair. The main guy said that he'd kind of fallen into it (there was a joke there but I didn't make it) and that he loved it because he got to ... he stopped and blushed wildly switched his words and said ... 'you know'.
Yeah I do.
So now I glide because some young kid likes to 'you know'.
The day I left on this trip, first New Jersey then Connecticut, I had an appointment for my wheelchair to have a spring cleaning. My chair gets used a lot, it travels a lot, it carries a lot. Over time I can feel the wheels gumming up, crud gathering around the ball bearings, fatigue sinking into it's frame. A couple times a year I get the wheelchair people to come and check it over and spruce it up.
They arrived way late for the appointment, two very tall boys came to take the chair to fix up. They looked like brothers, but weren't, they were beanpoles who looked about three days older than sperm. As the main guy folded up the chair to take it out, I felt this real twinge. I was trusting this kid with my mobility. I was going on a trip in minutes, I started to change my mind just as he looked up at me and said, 'I know.'
That's all.
'I know.'
I let the chair go. Joe arrived a few minutes later and told me he'd seen the two guys with the chair. They'd just taken it out by the elevator where there was room to work. One of the wheels was off and ... I asked him to stop. I didn't need to know.
I worried over the chair like it was flesh and blood. A few minutes later the chair was back and the main guy was explaining what they did and what they found. The back wheels were fine, the front ones were the one's that needed cleaning. They fixed it so it folded more easily. He spoke with precision, care and even respect for the work he'd done with the chair.
Before they left I asked them how they got into wheelchair repair. The main guy said that he'd kind of fallen into it (there was a joke there but I didn't make it) and that he loved it because he got to ... he stopped and blushed wildly switched his words and said ... 'you know'.
Yeah I do.
So now I glide because some young kid likes to 'you know'.
Saturday, April 18, 2009
Non, Rien de Rien
Ow!
Ow! Ow! Ow! I can't believe how much it hurts, really hurts. I have felt physical pain before in my life but it's nothing compared to this. I was warned about this before, I listened carefully to the warning, but it wasn't meant to and couldn't help me avoid this moment. This painful moment.
I loved my Grandmother Hingsburger dearly. She was a deeply kind woman. We had a lovely bond, a unique and special one. She managed to make me feel wildly important, something she managed with many. I was not jealous of the others who loved her, I was pleased simply to be in their company. We had talks, she and I, about many things. Once when she was looking particularly sad, I simply sat with her. After a few minutes she turned to me and said, "Some of the greatest pain you will ever feel will come from regrets, be careful the choices you make, the paths you choose, because one day you will feel the loss of the choice not made. It will hurt more than you can imagine." I held on to her and hoped and prayed that the choices that she made that lead to the moment I sat with her, were not amongst those that caused her pain.
Life means choices of course. We make millions a day. I make them for myself, I am paid to make some for others. I have felt, I thought, regret. I have looked back at clinical decisions made for others out of best intentions and have found that I was wrong. I felt regret, I thought. But now I know that what I felt was not regret, it was remorse, perhaps, or a thoughtful rethinking, but it wasn't regret.
Three years in a wheelchair have caused a significant change in my life. I look back over that time and then look over the hill into the time before 53 years of walking, and I feel many things. But I don't feel regret. I feel an odd thankfullness. I am here because of the diligence of doctors, the accessibility of the health care system, the purposeful love of a partner that knew how to nurse when nursing was needed. Many feelings, true, but not regret.
Regret walked up to me and slapped my hard a few days ago. I openned an innocent looking email. A benign email bringing me up to date on someone else's life. And WHAM! I gasped. The pain struck so hard, so fast, that it felt physical. Suddenly I saw the road not taken, the choice not made, I felt bitterness at the back of my throat, I felt blame towards others flare up, I felt anger at myself, I felt jealous at the journey of another. I was consumed. Consumed. I could hardly think. I understood why Grandma sat there so quietly, I now know that my sitting with her without question was the right thing to do.
Later, a little more sane, in the car on the way down to New Jersey, I told Joe about the email about the intense regret. He listened carefully. When I was done he said, "You still can, you know, if you really want, you still can, we'd have to reshape our lives, but you still can." I wasn't sure that I could, though. I didn't know if I believed in myself to the degree he believed in me. I thought it might just be an acheivement out of my reach. Even if there was time, I don't think there is ability.
"You think so," I asked.
"Yes," he said with certainty.
What dangers, I wonder are there in returning to a decision made and unmaking it. What dangers, I wonder are there in simply letting the past rest.
I wonder at what point we simply come to peace with our lives. I wonder if we ever do.
Ow! Ow! Ow! I can't believe how much it hurts, really hurts. I have felt physical pain before in my life but it's nothing compared to this. I was warned about this before, I listened carefully to the warning, but it wasn't meant to and couldn't help me avoid this moment. This painful moment.
I loved my Grandmother Hingsburger dearly. She was a deeply kind woman. We had a lovely bond, a unique and special one. She managed to make me feel wildly important, something she managed with many. I was not jealous of the others who loved her, I was pleased simply to be in their company. We had talks, she and I, about many things. Once when she was looking particularly sad, I simply sat with her. After a few minutes she turned to me and said, "Some of the greatest pain you will ever feel will come from regrets, be careful the choices you make, the paths you choose, because one day you will feel the loss of the choice not made. It will hurt more than you can imagine." I held on to her and hoped and prayed that the choices that she made that lead to the moment I sat with her, were not amongst those that caused her pain.
Life means choices of course. We make millions a day. I make them for myself, I am paid to make some for others. I have felt, I thought, regret. I have looked back at clinical decisions made for others out of best intentions and have found that I was wrong. I felt regret, I thought. But now I know that what I felt was not regret, it was remorse, perhaps, or a thoughtful rethinking, but it wasn't regret.
Three years in a wheelchair have caused a significant change in my life. I look back over that time and then look over the hill into the time before 53 years of walking, and I feel many things. But I don't feel regret. I feel an odd thankfullness. I am here because of the diligence of doctors, the accessibility of the health care system, the purposeful love of a partner that knew how to nurse when nursing was needed. Many feelings, true, but not regret.
Regret walked up to me and slapped my hard a few days ago. I openned an innocent looking email. A benign email bringing me up to date on someone else's life. And WHAM! I gasped. The pain struck so hard, so fast, that it felt physical. Suddenly I saw the road not taken, the choice not made, I felt bitterness at the back of my throat, I felt blame towards others flare up, I felt anger at myself, I felt jealous at the journey of another. I was consumed. Consumed. I could hardly think. I understood why Grandma sat there so quietly, I now know that my sitting with her without question was the right thing to do.
Later, a little more sane, in the car on the way down to New Jersey, I told Joe about the email about the intense regret. He listened carefully. When I was done he said, "You still can, you know, if you really want, you still can, we'd have to reshape our lives, but you still can." I wasn't sure that I could, though. I didn't know if I believed in myself to the degree he believed in me. I thought it might just be an acheivement out of my reach. Even if there was time, I don't think there is ability.
"You think so," I asked.
"Yes," he said with certainty.
What dangers, I wonder are there in returning to a decision made and unmaking it. What dangers, I wonder are there in simply letting the past rest.
I wonder at what point we simply come to peace with our lives. I wonder if we ever do.
Friday, April 17, 2009
My Little Pretties ...
It's like a science fiction movie. Really. REALLY. I noticed it right off, the moment the automatic doors swooshed open and we entered the hotel. Everyone stopped, turned, and looked at us. Distaste, shock, disapproval, were only some of the feelings that registered on all the perfect faces. Then, frozen moment thaws and we push on to the desk.
Coming down the stairs were a group of young men, maybe 17 or 18, all painfully thin, all dressed perfectly, all smiling perfect smiles as they talk. One of them has his hands, with long arty fingers resting on the bannister as he decends. Suddenly a door opens and girls of a similar age burst into the lobby, eyes darting around noticing and hopeing to be noticed. We waited in line while watching all this amazing activity. I glanced at Joe, was I imagining this? I could tell by his face that I was not.
At the check in, after the keys were handed to me I asked, 'So what's going on here today?' I was told that it was a 'Model Congress' where wannabe models come to learn about modelling. Oh. Nice. I guess.
A young man came shirtless from the pool, he was daintily nibbling on a potato chip. A potato chip. You read that right, ONE, potato chip. And I swear I could track each bite as it made the journey from food to poo. It was astonishing. I felt like a subspecies of being. My size, my disability, my age, everything about me, every word you would use to describe me physically set me apart, made me different. It was wild. I felt institutionalized, in public.
I got on the elevator with a older business woman who was as far from fat as I am from thin. She looked at us and said, "Thank God, other real people."
I said, "Oh, those kids are real alright. They don't know it yet, but they are."
She said, "And they won't be really beautiful until they realize that."
We all nodded with a sense of superiority laced with a strong hint of envy.
Coming down the stairs were a group of young men, maybe 17 or 18, all painfully thin, all dressed perfectly, all smiling perfect smiles as they talk. One of them has his hands, with long arty fingers resting on the bannister as he decends. Suddenly a door opens and girls of a similar age burst into the lobby, eyes darting around noticing and hopeing to be noticed. We waited in line while watching all this amazing activity. I glanced at Joe, was I imagining this? I could tell by his face that I was not.
At the check in, after the keys were handed to me I asked, 'So what's going on here today?' I was told that it was a 'Model Congress' where wannabe models come to learn about modelling. Oh. Nice. I guess.
A young man came shirtless from the pool, he was daintily nibbling on a potato chip. A potato chip. You read that right, ONE, potato chip. And I swear I could track each bite as it made the journey from food to poo. It was astonishing. I felt like a subspecies of being. My size, my disability, my age, everything about me, every word you would use to describe me physically set me apart, made me different. It was wild. I felt institutionalized, in public.
I got on the elevator with a older business woman who was as far from fat as I am from thin. She looked at us and said, "Thank God, other real people."
I said, "Oh, those kids are real alright. They don't know it yet, but they are."
She said, "And they won't be really beautiful until they realize that."
We all nodded with a sense of superiority laced with a strong hint of envy.
Thursday, April 16, 2009
Breakfast
It may have been the saddest conversation I have ever heard. We were breakfasting in a hotel on the way to a speaking gig tomorrow in New Jersey and stayed overnight in a comfortable little spot. They serve a free breakfast and we went down to sample the buffet. As we were finishing, just a few minutes ago, I sat back in my wheelchair and took a hit of tea.
A couple came in, a few years younger than us, they looked incredibly tired. They sat at a table not far from us and spoke not a word to each other. They looked gray and wan. After they finished eating he said to she, 'Now?' She nodded as if it took every bit of energy to move. He pulled out a cell phone and punched in a number. Why people speak louder on the phone than in everyday life, I do not know, but they do. I heard him, everyone heard him.
"We thought we'd drop by and make sure your day gets off to a good start," he said after the hellos had been taken care of. There was a long pause and he said, "You don't want us to come by?" Again a long pause, "We just want to make sure ... ok, ok, ok.' Again he waited, his wife had eyes full of worry and hurt. "We'll just stay 15 minutes, maybe half an hour, we want to help." A long pause, everyone had stopped eating as a family drama of some kind played out before us ... "OK, we'll be there in a few minutes."
He hung up and his voice naturally lowered, I heard him explain to his wife that their daughter had been up till three in the morning, she was still extremely upset, she isn't up for much. "But we can come?" his wife asked.
"Yes, we can come," he said wiping tears from his eyes.
They got up to leave and as they walked by me I wanted to reach out and reassure them, odd that - I'm not even sure that reassuance is realistic, would be wanted or is appropriate, but I wanted to anyways.
Parenthood. How you all cope I will never fully understand. No matter what brand of kid you've got, that child will worry you all your days ... and maybe that's an ok way to spend all your days.
A couple came in, a few years younger than us, they looked incredibly tired. They sat at a table not far from us and spoke not a word to each other. They looked gray and wan. After they finished eating he said to she, 'Now?' She nodded as if it took every bit of energy to move. He pulled out a cell phone and punched in a number. Why people speak louder on the phone than in everyday life, I do not know, but they do. I heard him, everyone heard him.
"We thought we'd drop by and make sure your day gets off to a good start," he said after the hellos had been taken care of. There was a long pause and he said, "You don't want us to come by?" Again a long pause, "We just want to make sure ... ok, ok, ok.' Again he waited, his wife had eyes full of worry and hurt. "We'll just stay 15 minutes, maybe half an hour, we want to help." A long pause, everyone had stopped eating as a family drama of some kind played out before us ... "OK, we'll be there in a few minutes."
He hung up and his voice naturally lowered, I heard him explain to his wife that their daughter had been up till three in the morning, she was still extremely upset, she isn't up for much. "But we can come?" his wife asked.
"Yes, we can come," he said wiping tears from his eyes.
They got up to leave and as they walked by me I wanted to reach out and reassure them, odd that - I'm not even sure that reassuance is realistic, would be wanted or is appropriate, but I wanted to anyways.
Parenthood. How you all cope I will never fully understand. No matter what brand of kid you've got, that child will worry you all your days ... and maybe that's an ok way to spend all your days.
Wednesday, April 15, 2009
Meaning
What an interesting journey this has been. And we haven't even left yet. Joe and I are masters at getting around North America and the United Kingdom. We've conquered language (does anyone in the North America know what an 'estate car' is? have you Brits ever heard of a 'station wagon'?) and usually arrive to get exaclty what we need. So we were pretty cocky when we agreed to a series of three lectures in Israel this June. We were excited to be asked and agreed readily, but now we are working on things like transportation - getting me from A to B with my chair.
I have learned a great deal from this experience of disability - patience and a willingness to go over and over and over things again. The folks in Israel are working very diligently to make this a good experience and we are emailing back and forth with questions and answers. I think we are near through the planning and soon we can just get on with the anticipation.
What's cool about this is the simple fact that I am going to Israel ... oh not to mention the World Congress on Down Syndrome in Dublin ... at all. I remember when the wheelchair rolled into my hospital room that I wondered if, in some way, my career was soon to be over. I wondered what the changes would mean. I wondered what I would mean.
Years later I'm working at Vita on what may be the most important project of my life. I'm still travelling across North America and, with Israel, will travel the farthest I have ever travelled to give a lecture. All while sitting down.
That wheelchair rolled into my room and I rolled into my future.
The one that was still there.
I have learned a great deal from this experience of disability - patience and a willingness to go over and over and over things again. The folks in Israel are working very diligently to make this a good experience and we are emailing back and forth with questions and answers. I think we are near through the planning and soon we can just get on with the anticipation.
What's cool about this is the simple fact that I am going to Israel ... oh not to mention the World Congress on Down Syndrome in Dublin ... at all. I remember when the wheelchair rolled into my hospital room that I wondered if, in some way, my career was soon to be over. I wondered what the changes would mean. I wondered what I would mean.
Years later I'm working at Vita on what may be the most important project of my life. I'm still travelling across North America and, with Israel, will travel the farthest I have ever travelled to give a lecture. All while sitting down.
That wheelchair rolled into my room and I rolled into my future.
The one that was still there.
Tuesday, April 14, 2009
Extraordinary Ordinariness
It was just before noon that we reclaimed the calm home that we live in. Everything had been packed away, everyone had said 'Goodbye' in the driveway. We had a bit of shopping to do so we waved them off and then headed up to the grocers. Henry carried the groceries and as we left onto Bloor Street, I said to Joe, "Do you want to go a block over and go home through the University?" Joe was very up for it.
So for the next hour or so we meandered up and down small streets and passageways. For most of our life together we walked long distances together. We always talked while we walked. Oddly, I'd have to say that our 'walking talks' were very different than our 'sitting talks'. I think they are a bit more intimate, a bit more honest, a lot more revealing. We laughed as we discovered the secrets of our neighbourhood.
We had to be very careful at times with the state of the pavement and some curb cuts that were dangerous to WALK over. But we refused to let these little annoyances even enter into the conversation. It was like we were both young again, both able to enjoy a simple walk on a beautiful day.
On of Henry's best attributes, besides being able to carry my weight up and down hills, is that he is silent. We hear not even a whirring from him as I move around. For awhile it was simply like we were walking side by side, like we were simply and unremarkably out for a stroll.
We got home and I parked Henry in his spot and we plugged him in for a charge. Later, Joe went to check to see if the charge was finished. It wasn't. But he stood and looked at the chair.
He said: I thought we got this chair for you.
So for the next hour or so we meandered up and down small streets and passageways. For most of our life together we walked long distances together. We always talked while we walked. Oddly, I'd have to say that our 'walking talks' were very different than our 'sitting talks'. I think they are a bit more intimate, a bit more honest, a lot more revealing. We laughed as we discovered the secrets of our neighbourhood.
We had to be very careful at times with the state of the pavement and some curb cuts that were dangerous to WALK over. But we refused to let these little annoyances even enter into the conversation. It was like we were both young again, both able to enjoy a simple walk on a beautiful day.
On of Henry's best attributes, besides being able to carry my weight up and down hills, is that he is silent. We hear not even a whirring from him as I move around. For awhile it was simply like we were walking side by side, like we were simply and unremarkably out for a stroll.
We got home and I parked Henry in his spot and we plugged him in for a charge. Later, Joe went to check to see if the charge was finished. It wasn't. But he stood and looked at the chair.
He said: I thought we got this chair for you.
Monday, April 13, 2009
What The Waiter Said
There is often such a clumbsiness in how waitstaff handle the extra chair. They see me coming to the table and rush about grabbing first this chair then that and bumbling along with it trying to find somewhere to put it. It's like someone in a wheelchair has never gone out to eat before in the history of man. But, nonetheless, we were seated at the table where we were going to chow down on Easter Sunday Brunch. Predictably the food was arrayed on tables set up with narrow passageways. We are still living in a time where accessibility is a surprise and 'sorry sir' the common experience.
So it came to be that Ruby and I were alone at the table for a wee while. Her relationship with Henry, my wheelchair, had increased her affection towards me astronomically. So there was no worry about missing Mom and Dad when Dave and Henry were on guard. The Maitress D' had given Ruby a little bag that contained children's stuff. Crayons, colouring book, tic tac toe set were amongst the tresures. Ruby quite diligently pulled everything out. Measured it up. She then decided to colour in the tic tac toe markers. She was gently hummmmmmmmming to herself as she made herself busy.
I noticed the waiter notice her. I thought he was noticing her pretty pink dress and matching pink gum boots (with a delightful pink heart motif). It was like he was drawn magnetically over to the table. I was getting a little concerned in his interest, he caught my eye and looked meaningfully down at the table, like something was going wrong. I could see nothing wrong, I smiled back up at him. Exasperation was all over his face. He now thought that the others had left a child and a dim cripple all alone at the table.
He rushed over and said to Ruby, "Those aren't for colouring, you are supposed to colour here". He gently openned the book and gave it to Ruby, then he was gone. It happened in an instant. Ruby looked at the colouring book, it held no interest to her. She looked down at the tic tac toe markers knowing now she was not to colour them. She put the crayon down.
She put the crayon down.
Why did the waiter care?
Was God neglectful by leaving the colouring of tic tac toe markers out of the list of commandments?
My resentment quickly turned to regret. I have done this a thousand times. A thousand times I have interjected myself and my sense of what is proper (not what is right, there is a huge difference) into the lives of those in my care. I have cared about things that didn't matter, I have intervened in triviality, I have made little room for adaption and difference.
Why does even a little bit of power corrupt even in very little places? Why do we suddenly feel that we have to have the world set up between our margins? Why can't we occasionally just shut up.
Shut up.
Maybe sometimes our silence, our tolerance, our knowing our own place can be the biggest gift we can give another.
Maybe sometimes we should stop and think before we speak, think about saying words that matter about things that don't matter.
Maybe we should just, occasionally, shut up.
So it came to be that Ruby and I were alone at the table for a wee while. Her relationship with Henry, my wheelchair, had increased her affection towards me astronomically. So there was no worry about missing Mom and Dad when Dave and Henry were on guard. The Maitress D' had given Ruby a little bag that contained children's stuff. Crayons, colouring book, tic tac toe set were amongst the tresures. Ruby quite diligently pulled everything out. Measured it up. She then decided to colour in the tic tac toe markers. She was gently hummmmmmmmming to herself as she made herself busy.
I noticed the waiter notice her. I thought he was noticing her pretty pink dress and matching pink gum boots (with a delightful pink heart motif). It was like he was drawn magnetically over to the table. I was getting a little concerned in his interest, he caught my eye and looked meaningfully down at the table, like something was going wrong. I could see nothing wrong, I smiled back up at him. Exasperation was all over his face. He now thought that the others had left a child and a dim cripple all alone at the table.
He rushed over and said to Ruby, "Those aren't for colouring, you are supposed to colour here". He gently openned the book and gave it to Ruby, then he was gone. It happened in an instant. Ruby looked at the colouring book, it held no interest to her. She looked down at the tic tac toe markers knowing now she was not to colour them. She put the crayon down.
She put the crayon down.
Why did the waiter care?
Was God neglectful by leaving the colouring of tic tac toe markers out of the list of commandments?
My resentment quickly turned to regret. I have done this a thousand times. A thousand times I have interjected myself and my sense of what is proper (not what is right, there is a huge difference) into the lives of those in my care. I have cared about things that didn't matter, I have intervened in triviality, I have made little room for adaption and difference.
Why does even a little bit of power corrupt even in very little places? Why do we suddenly feel that we have to have the world set up between our margins? Why can't we occasionally just shut up.
Shut up.
Maybe sometimes our silence, our tolerance, our knowing our own place can be the biggest gift we can give another.
Maybe sometimes we should stop and think before we speak, think about saying words that matter about things that don't matter.
Maybe we should just, occasionally, shut up.
Sunday, April 12, 2009
Easter, The Morning of ...
I came around the corner and found Ruby sitting on Henry's lap. He was parked right up against the cabinet behind the chesterfield. I've learned to back him in so that when I leave the apartment I can drive right out. I permit no one to use Henry other than me, but there she was smiling up at me, "I sit in Dave's seat" she said and then began pushing the control buttons. I quickly distracted her and got her off the chair. I had visions of her turning the chair on and careening into the wall.
She likes Henry a lot. She fell for him at the mall. We'd all gone out for lunch and were walking around. I asked her if she wanted a ride and she nodded and put her hands up. Once on board we zipped off and she actually said, "Weeeeeee". I didn't know that people said, "Weeeeeee" but they do. She sat on my lap, ok stomach, and saw the world pass by. She noticed my hand on the controls and asked, "What's that" pointing to the lights. So as we drove I explained how it all worked. She lost interest and I thought to myself that this wouldn't be the last time that a man talked longer than her interest could sustain.
We stopped and waited as her mother went into a shop to look for clothes. Beside us on the bench was another young father with a newborne baby. She is fascinated by babies so she went over and looked. Baby's dad gave permission so she patted the little boy on the leg and whispered something we couldn't hear to the child. She was getting bored so Joe went in and told Mom and Dad that we would met them at the bookstore's children's section.
She climbed back on my stomach and off we went. Inside the store window we saw another infant child in a bassinette so we stopped and waved. Mother smiled and took the baby's hand and waved back. We drove off Ruby saying, "Baby waved to me." Ahead was a very old woman with a walker. I saw her looking at Ruby and smiling. I slowed down and her smile broadened. We were in no rush so I stopped. The woman waved to her and I said, "Wave your hand," and she did reluctantly.
The elderly woman said, "You look like you are enjoying your ride." Ruby nodded but didn't speak. She was clearly mulling something over. "You're not a baby," she said to the old woman. Delighted, she laughed, "No, I'm not. What am I?" Ruby thought and said, "You a woman." She laughed again and then looked at me, "It's been a while since someone treated me as anything other than a baby, and maybe longer since anyone noticed I was a woman." We said our goodbyes.
I kissed the top of Ruby's head.
She looked back and smiled at me.
"That was for giving a lovely Easter present," I said to someone distracted by the display in the next window.
This Easter, May People Notice You.
She likes Henry a lot. She fell for him at the mall. We'd all gone out for lunch and were walking around. I asked her if she wanted a ride and she nodded and put her hands up. Once on board we zipped off and she actually said, "Weeeeeee". I didn't know that people said, "Weeeeeee" but they do. She sat on my lap, ok stomach, and saw the world pass by. She noticed my hand on the controls and asked, "What's that" pointing to the lights. So as we drove I explained how it all worked. She lost interest and I thought to myself that this wouldn't be the last time that a man talked longer than her interest could sustain.
We stopped and waited as her mother went into a shop to look for clothes. Beside us on the bench was another young father with a newborne baby. She is fascinated by babies so she went over and looked. Baby's dad gave permission so she patted the little boy on the leg and whispered something we couldn't hear to the child. She was getting bored so Joe went in and told Mom and Dad that we would met them at the bookstore's children's section.
She climbed back on my stomach and off we went. Inside the store window we saw another infant child in a bassinette so we stopped and waved. Mother smiled and took the baby's hand and waved back. We drove off Ruby saying, "Baby waved to me." Ahead was a very old woman with a walker. I saw her looking at Ruby and smiling. I slowed down and her smile broadened. We were in no rush so I stopped. The woman waved to her and I said, "Wave your hand," and she did reluctantly.
The elderly woman said, "You look like you are enjoying your ride." Ruby nodded but didn't speak. She was clearly mulling something over. "You're not a baby," she said to the old woman. Delighted, she laughed, "No, I'm not. What am I?" Ruby thought and said, "You a woman." She laughed again and then looked at me, "It's been a while since someone treated me as anything other than a baby, and maybe longer since anyone noticed I was a woman." We said our goodbyes.
I kissed the top of Ruby's head.
She looked back and smiled at me.
"That was for giving a lovely Easter present," I said to someone distracted by the display in the next window.
This Easter, May People Notice You.
Saturday, April 11, 2009
Prepared To Save The World
I am accused by my friends of being a wee bit obsessed by all things disability. Apparently (because I don't see it) this obsession began long before my own disability and stemmed from my work with those with intellectual disabilities. While I do seek out information about disability and disability culture, it simply makes sense to me. How can you not be interested in knowing more about the people you work with, spend time with and (um) earn a living off of. So I have a stack of books about disability or with characters with disabilities. I do web searches on the disability pride movement. I subscribe to the concept of and attempt to contribute to 'disability community'.
While doing this a while ago I read an article on Superheros with Disabilities. The article must not have made much of an impression because for the life of me I can't remember many of the caped cripples listed, other than the wheelchair guy in X-men. I don't even remember the intent of the article, but I do remember reading it and it's filed away in neurons that I no longer have access to, probably nuzzled beside 'Grad Night'.
I never thought that I'd join that esteemed list of Superheros, but it seems that I do have a 'Superhero' power. I discovered it yesterday. Mike and Marissa and Ruby came to visit for Easter and the moment they arrived the quiet of the apartment changed into the sounds of family and feast. For the first time on a visit Ruby did not make strange with us at all. She came right over for 'hellos' and for conversation. She's at the age where what just happened is the most important thing in the world. When she talks on the phone she comes on with 'I brushed my teeth' or 'I eat supper' or 'I go shopping'. So she came over and said, 'I visit Dave and Joe.'
After an hour or so, just moments before I discovered my superpower, she came over to show me her pet dog, which is a minature that is kept in a little metal box attached to her belt. She took it out and held it up to me. I looked at it and was amazed that she could see 'dog' in it at all. Then she took a tiny finger and pointed at the little brown stub tail and said, 'Poo'. She said this with a seriousness that was hysterical.
I took the little creature and sniffed at it's tale and said, 'Ooooooo stinky poo'. She grinned. I then noticed Joe in the kitchen and said to Ruby, go wipe the poo on Joe's shirt. She looked at me shocked. I grinned. She grinned back. She glanced into the kitchen, mischief all over her face. She was a ninja on tiptoe into the kitchen. She sprang on Joe and rubbed the dog's bottom down his shirt. Joe, having heard our conversation, reacted appropriately with horror at having dog poo on his shirt. Ruby thought this was so funny that she collapsed against the cupboard, held her stomach and laughed.
We played 'dog poo on the shirt' for the next half hour, it's a game that is surprisingly fun to play. But I discovered that I may be in a wheelchair but I have the power to make a 2 and a half year old double over in glee.
A superpower indeed.
So if the world is ever in danger from mutant children, I know just the 'fart joke' that could save the world.
I expect to hear from CSIS.
Friday, April 10, 2009
Good Friday: An Unexpected Post
Today, in my meager and humble faith, is the holiest day on the Christian calender. I had thought of not writing a blog today, leaving my mind fallow for a few hours. But then, constantly intruding, constantly interupting, something someone said won't leave me. I've decided to take it as a prompt, so here goes.
Here in Toronto there has been a huge controversy over two babies. One expected to die was to give her heart to one expected to live. The decision made she was taken off life support and ... she breathed on her own. There ensues all sorts of discussion - including whether she should be fed as there is a high cost in caring for her.
I'm leaving that discussion alone. Everyone here at Chewing the Fat knows my feelings about those feelings.
But someone said, "God must have a special purpose for her."
I know, I know that this was meant kindly. But. I do not take it kindly. What does this mean? That there are those for whom God does not have a special purpose? That there are those who's deaths are not tragic? Those not wanted or welcomed home in heaven? That there are those upon whom God does not smile with love and favour?
This disturbs me. It arrests my faith. For, simply, I thought we all had a special purpose. I had no idea that there were those borne for no purpose. I had no idea that God was that horribly cruel. I can't imagine taking a purposeless breath. I can't imagine my heart beating a purposeless rhythm. I cannot imagine living a purposeless moment.
I am here.
I have things that only I do.
I am unique.
There is only one me.
There is a pattern that I have been woven into. I believe, completely believe that that little baby, that those little babies, have their purpose, have their place. I believe that God, the one fully constant love for the entirety of my life, has the capacity to see my purpose, our purpose, his purpose, her purpose, your purpose. I believe that creation begins and ends with God's love. I believe ... well, I guess that's what I wanted to say ... I believe.
In both babies.
In God.
And in purpose.
Here in Toronto there has been a huge controversy over two babies. One expected to die was to give her heart to one expected to live. The decision made she was taken off life support and ... she breathed on her own. There ensues all sorts of discussion - including whether she should be fed as there is a high cost in caring for her.
I'm leaving that discussion alone. Everyone here at Chewing the Fat knows my feelings about those feelings.
But someone said, "God must have a special purpose for her."
I know, I know that this was meant kindly. But. I do not take it kindly. What does this mean? That there are those for whom God does not have a special purpose? That there are those who's deaths are not tragic? Those not wanted or welcomed home in heaven? That there are those upon whom God does not smile with love and favour?
This disturbs me. It arrests my faith. For, simply, I thought we all had a special purpose. I had no idea that there were those borne for no purpose. I had no idea that God was that horribly cruel. I can't imagine taking a purposeless breath. I can't imagine my heart beating a purposeless rhythm. I cannot imagine living a purposeless moment.
I am here.
I have things that only I do.
I am unique.
There is only one me.
There is a pattern that I have been woven into. I believe, completely believe that that little baby, that those little babies, have their purpose, have their place. I believe that God, the one fully constant love for the entirety of my life, has the capacity to see my purpose, our purpose, his purpose, her purpose, your purpose. I believe that creation begins and ends with God's love. I believe ... well, I guess that's what I wanted to say ... I believe.
In both babies.
In God.
And in purpose.
Thursday, April 09, 2009
Joe The Bunny
I had a couple of intense meetings at work. After all these years I still feel the pressure that comes with fiddling in other people's lives. So we all met, well intentioned and well prepared. Much was done. After checking voicemails and emails back in my office I managed to take a glance outside. The weather was slowly clearing up and the field across from me was beginning to turn green. At least the part not covered in trash.
There was a sense in the office that a long weekend was coming and people were making it through the week with an eye to the weekend. I suddenly had an Easter memory. Joe and I were just pups living in Toronto down on Alexander Street. We were joining two friends for Easter brunch and I had the sparkling idea of renting a Easter Bunny suit for Joe to wear to the brunch. I thought it would be cute and fun.
Joe thought it was a stupid idea.
We rented the suit and he put it on in the apartment and was saying the whole time that he wasn't going to wear it, he thought it was silly, and that the Bunny looked like he was wired on way too much Red Bull. As I had yet to learn that 'no means no' I got him in the suit and out onto Church Street. By then it was on it's way to becoming the Gay Neighbourhood so a tubby guy walking down the street with a big white bunny wasn't the oddest thing to be seen.
All the way up the street Joe muttered under his breath. He cursed. He swore. I told him that he had nothing to worry about, no one could see his face, I was the one seen walking with the bunny, he was just anonymously bunny. This did not comfort him and he, rightly, pointed out that anyone who knew us would see me and know that it was his ass in the bunny suit.
I actually thought he'd get into it but no, I walked up Church Street on Easter Sunday with a Bunny that fricked and fracked and muttered death threats. It struck me funny then. It struck me funny now.
When Joe showed up to pick me up after work and we were driving home I reminded him of the Bunny Suit and he remembered only the second half of the day where everyone got off on the Bunny Suit and others wanted to try it on. We ended up with one of our friends hopping down the street with us to a coffee shop on the way home. Yeah, I remember all that too ... but it was the cursing bunny I found funny.
As we approach Easter I realize I have much to be thankful for, primarily amongst which is the millions of memories to that can bring relief to tough days at work.
Now where is that frigging fragging carrot anyways.
There was a sense in the office that a long weekend was coming and people were making it through the week with an eye to the weekend. I suddenly had an Easter memory. Joe and I were just pups living in Toronto down on Alexander Street. We were joining two friends for Easter brunch and I had the sparkling idea of renting a Easter Bunny suit for Joe to wear to the brunch. I thought it would be cute and fun.
Joe thought it was a stupid idea.
We rented the suit and he put it on in the apartment and was saying the whole time that he wasn't going to wear it, he thought it was silly, and that the Bunny looked like he was wired on way too much Red Bull. As I had yet to learn that 'no means no' I got him in the suit and out onto Church Street. By then it was on it's way to becoming the Gay Neighbourhood so a tubby guy walking down the street with a big white bunny wasn't the oddest thing to be seen.
All the way up the street Joe muttered under his breath. He cursed. He swore. I told him that he had nothing to worry about, no one could see his face, I was the one seen walking with the bunny, he was just anonymously bunny. This did not comfort him and he, rightly, pointed out that anyone who knew us would see me and know that it was his ass in the bunny suit.
I actually thought he'd get into it but no, I walked up Church Street on Easter Sunday with a Bunny that fricked and fracked and muttered death threats. It struck me funny then. It struck me funny now.
When Joe showed up to pick me up after work and we were driving home I reminded him of the Bunny Suit and he remembered only the second half of the day where everyone got off on the Bunny Suit and others wanted to try it on. We ended up with one of our friends hopping down the street with us to a coffee shop on the way home. Yeah, I remember all that too ... but it was the cursing bunny I found funny.
As we approach Easter I realize I have much to be thankful for, primarily amongst which is the millions of memories to that can bring relief to tough days at work.
Now where is that frigging fragging carrot anyways.
Wednesday, April 08, 2009
A Little Tiny Baby In His Hands
I got an email, just a few minutes ago, from someone I knew many years ago. We both worked with people with disabilities, for the same agency, but in different locations. We were never friends. In fact we were more often at odds than we were in agreement. I respected her, as much as anyone can respect another who holds differing opinions, but I did not really like her. So an email from her was an odd and unexpected thing.
The email was brief, not long on friendliness, and asked of me a favour. Apparently this woman's best friend's daughter has had a child, a girl, with significant disabilities. She asked if I could write her an inspirational kind of condolence letter. Something to help her understand that this isn't the worst possible thing that could have happened. Would I please?
My first thought, an unkind one, was that 'with these kinds of friends' ... I mean the suggestion of a condolence letter to mark the birth of a child. Yeah, an email from a stranger to replace the warm wishes of friends. A condolence in place of a congratulations. Babies are babies, they are never tragedies. Sure there are tragic circumstances and tragic journies ... but babies, to me, are babies. And babies are about hope and joy and strength. Life holds on. Even a brief life, is life. Even a tough life, is a life. Every battle has hope of victory. I get that there have to be some adaptions as parents switch from fantasy child to real child. I also get that, never having had a child, I will never understand that moment of reckoning. Not truly. Not really.
But, a baby.
A baby may have severe disabilities but they shouldn't have to bear, on tiny shoulders the disappointment of others.
A baby may have medical complications but they shouldn't face complicated surgery without the support of a very uncomplicated love from family.
A baby may have a tough road but they are carried the first few miles ... aren't they? Shouldn't they be?
I can't write this email. I can't conjure the picture of these parents. I can write to you out there in the nonspecific universe about specific issues. But to write about a baby. A little tiny baby. I just can't do it.
Give her hope in your touch.
Give her love in your voice.
Give her faith in your arms.
A baby cannot be greeted with a condolence ...
A family cannot be supported by a stranger ...
Even so, welcome to the world little one ...
may life surprise you and may you surprise others.
The email was brief, not long on friendliness, and asked of me a favour. Apparently this woman's best friend's daughter has had a child, a girl, with significant disabilities. She asked if I could write her an inspirational kind of condolence letter. Something to help her understand that this isn't the worst possible thing that could have happened. Would I please?
My first thought, an unkind one, was that 'with these kinds of friends' ... I mean the suggestion of a condolence letter to mark the birth of a child. Yeah, an email from a stranger to replace the warm wishes of friends. A condolence in place of a congratulations. Babies are babies, they are never tragedies. Sure there are tragic circumstances and tragic journies ... but babies, to me, are babies. And babies are about hope and joy and strength. Life holds on. Even a brief life, is life. Even a tough life, is a life. Every battle has hope of victory. I get that there have to be some adaptions as parents switch from fantasy child to real child. I also get that, never having had a child, I will never understand that moment of reckoning. Not truly. Not really.
But, a baby.
A baby may have severe disabilities but they shouldn't have to bear, on tiny shoulders the disappointment of others.
A baby may have medical complications but they shouldn't face complicated surgery without the support of a very uncomplicated love from family.
A baby may have a tough road but they are carried the first few miles ... aren't they? Shouldn't they be?
I can't write this email. I can't conjure the picture of these parents. I can write to you out there in the nonspecific universe about specific issues. But to write about a baby. A little tiny baby. I just can't do it.
Give her hope in your touch.
Give her love in your voice.
Give her faith in your arms.
A baby cannot be greeted with a condolence ...
A family cannot be supported by a stranger ...
Even so, welcome to the world little one ...
may life surprise you and may you surprise others.
Tuesday, April 07, 2009
Refusing To Give Ground
We are home from our quick trip to British Columbia, we arrived home on time at the gate, personelle were there to help me get to baggage. All was accomplished without problem or fanfare. I was waiting for Joe to bring the car around top pick me up and I was carefully attending my luggage. In fact, on each part of the journey, outbound and inbound, I've had the luggage in the luggage cart right beside me wheelchair with may arm resting on the back of the cart.
I didn't realize until yesterday that the 'incident' of a few days ago had actually affected me more deeply than I had thought. Now there is anxiety while I wait for Joe's return with the car, before there was a quiet waiting. Now there is a watchful concern as I scan for problems, before I either read or simply watched people go by.
About five minutes into waiting a fellow from security came by, as he approached I felt fear in anticipation of a problem, as he passed me by without noticing me I felt myself relax quickly. Then I knew I was brewing a new fear, that I was getting ready to bake up a prejudice, that I had to stop this right now.
Years ago, when I was a boy, I knew a woman who was a very large woman. She could be bright and lively when she wasn't self-loathing about her weight. She, one day, simply stopped going out. She couldn't bear the ways that people looked at her, the way that people treated her. She had once, she assured me, been pretty. The change from envy to pity ... or worse, disgust, in people's eyes simply tortured her. She let it, in the end, jail her.
I never really understood this until now. I sat there trying to figure out how we could do this differently so I wasn't left alone with the luggage. That's freaking silly. I've travelled in a wheelchair for over three years now and I've only once had a problem. Now I'm going to give up even more independance? Now I'm going to approach situations with expecations of problems? Now I'm going to see people who formally gave me comfort by their presence as my natural enemies? That's giving a lot of power to one jerk. I'm not going to do it. (That guy has discovered that I have a bit of power myself, by the by.)
After a couple minutes of realization I pushed the cart about four inches from me and took my hand off it. SO THERE.
I didn't realize until yesterday that the 'incident' of a few days ago had actually affected me more deeply than I had thought. Now there is anxiety while I wait for Joe's return with the car, before there was a quiet waiting. Now there is a watchful concern as I scan for problems, before I either read or simply watched people go by.
About five minutes into waiting a fellow from security came by, as he approached I felt fear in anticipation of a problem, as he passed me by without noticing me I felt myself relax quickly. Then I knew I was brewing a new fear, that I was getting ready to bake up a prejudice, that I had to stop this right now.
Years ago, when I was a boy, I knew a woman who was a very large woman. She could be bright and lively when she wasn't self-loathing about her weight. She, one day, simply stopped going out. She couldn't bear the ways that people looked at her, the way that people treated her. She had once, she assured me, been pretty. The change from envy to pity ... or worse, disgust, in people's eyes simply tortured her. She let it, in the end, jail her.
I never really understood this until now. I sat there trying to figure out how we could do this differently so I wasn't left alone with the luggage. That's freaking silly. I've travelled in a wheelchair for over three years now and I've only once had a problem. Now I'm going to give up even more independance? Now I'm going to approach situations with expecations of problems? Now I'm going to see people who formally gave me comfort by their presence as my natural enemies? That's giving a lot of power to one jerk. I'm not going to do it. (That guy has discovered that I have a bit of power myself, by the by.)
After a couple minutes of realization I pushed the cart about four inches from me and took my hand off it. SO THERE.
Monday, April 06, 2009
What'dya Think
She came in with her parents, they found a table at a very busy food court. She was carrying her lunch, they got her seated and then left, each in a different direction. She slowly tucked into her lunch occasionally glancing around her. I'm terrible with ages but I'd guess that she'd be between 8 and 10. She attempted to make no contact or conversation with anyone, she simply quietly ate and looked around.
She was cute as hell, Down Syndrome and all.
I didn't notice her at first. Joe kept glancing off in her direction and finally I asked what he was looking at. He was reluctant to say but finally said, "A couple has left their daughter with Down Syndrome alone at at table. They've been gone awhile now." That was when I turned to see her.
We both agreed that we didn't know how to 'see' what we were seeing. We don't have kids, haven't raised kids, and have never taken kids to a food court. So, I want your help with the following questions ...
at what age is it ok to leave a typical child alone in a food court
if she is skillful, like this little girl seemed to be, is it ok for a child with a disability to be left alone so young
OK, I know the world is dangerous, but I also know that paranoia isn't a healthy way to live your life. Or, is it? A wee bit of paranoia surely can't be a bad thing. After all, WE noticed her there alone, so ... wouldn't a preditor have noticed the same thing.
how do you determine when it's ok for your child to experience and experiment with independence
how do you cope with your own fears ... she wasn't our child and we were sweating
So, I'm in the air today flying home from Vancouver, I'm going to be thinking about these things all the way home. I'll be curious to compare notes with you all on my return.
She was cute as hell, Down Syndrome and all.
I didn't notice her at first. Joe kept glancing off in her direction and finally I asked what he was looking at. He was reluctant to say but finally said, "A couple has left their daughter with Down Syndrome alone at at table. They've been gone awhile now." That was when I turned to see her.
We both agreed that we didn't know how to 'see' what we were seeing. We don't have kids, haven't raised kids, and have never taken kids to a food court. So, I want your help with the following questions ...
at what age is it ok to leave a typical child alone in a food court
if she is skillful, like this little girl seemed to be, is it ok for a child with a disability to be left alone so young
OK, I know the world is dangerous, but I also know that paranoia isn't a healthy way to live your life. Or, is it? A wee bit of paranoia surely can't be a bad thing. After all, WE noticed her there alone, so ... wouldn't a preditor have noticed the same thing.
how do you determine when it's ok for your child to experience and experiment with independence
how do you cope with your own fears ... she wasn't our child and we were sweating
So, I'm in the air today flying home from Vancouver, I'm going to be thinking about these things all the way home. I'll be curious to compare notes with you all on my return.
Sunday, April 05, 2009
Moms and Dads
We got there early and were surprised to see that the room was set for 100 people. Joe busied himself with setting up a book table and I got my notes out and organized. I'd been asked to do a talk with a slightly different focus from what I usually do so I was very careful in arranging what was to be said when and with with what emphasis. Twenty minutes to start and the room was still empty with the exception of me at the front and a hotel guy making sure the coffee, tea and juice table was all set. He looked over at me with a sad smile. I smiled back more hopefully.
Saturday lectures are an interesting thing. They are typically targetted, as this one was, to parents primarily and staff secondarily. Usually if you get 10 to 15 you're doing well. People are busy, generally and parents are tired, constantly. But we hoped for at least a few, a hundred maybe not, but a few. But then, almost suddenly, people began pouring into the room. It was quite full. The hotel guy came by and I gave him a victorious nod.
I have little to say except how much I enjoy doing parent training. I began my speaking career with parent training, speaking in church basements to small groups of parents. I think that I owe my whole approach to training to those early days. I learned early that parents respect people who tell the truth, who are intellectually honest and who do not patronize. Parent's have an expertise that is often, and at great cost, untapped.
So for a whole day in Vancouver I was refreshed by expectations of parents who loved their kids. I was challenged by questions that carried both frustration and humour. I got a glimpse into the sustaining power of hope.
And now I'm taking a day off.
Saturday lectures are an interesting thing. They are typically targetted, as this one was, to parents primarily and staff secondarily. Usually if you get 10 to 15 you're doing well. People are busy, generally and parents are tired, constantly. But we hoped for at least a few, a hundred maybe not, but a few. But then, almost suddenly, people began pouring into the room. It was quite full. The hotel guy came by and I gave him a victorious nod.
I have little to say except how much I enjoy doing parent training. I began my speaking career with parent training, speaking in church basements to small groups of parents. I think that I owe my whole approach to training to those early days. I learned early that parents respect people who tell the truth, who are intellectually honest and who do not patronize. Parent's have an expertise that is often, and at great cost, untapped.
So for a whole day in Vancouver I was refreshed by expectations of parents who loved their kids. I was challenged by questions that carried both frustration and humour. I got a glimpse into the sustaining power of hope.
And now I'm taking a day off.
Saturday, April 04, 2009
A New Meaning for OT
Prepare to introduce your jaw to the floor.
My week of encounters with elderly folks continues. (Warning: coarse language ... post will not be to everyone's taste.) We arrived in Vancouver at the hotel where I'll be working tomorrow. After finding a parking spot we got to the elevator and waited beside a woman of considerable age and, judging by her clothing, considerable wealth. She glanced a hello to us, we glanced back. Subtle social interactions really are in my skill set though many would disbelieve.
The elevator openned and there were two youths, maybe 15 or 16, slouching against the wall. The woman said to them, is this elevator going up or down. One of them said through a sneer, "Don't be so retarded, this is the bottom floor." She said, sweetly, "Oh, dear, I didn't know." It was a large elevator so we were all able to get on.
Just as the door closed she looked at the boy who had spoken and said, "If you wanted to be both accurate and offensive you should have said, 'old twat'. You see, I clearly don't have a developemental disability, so something about my gender would have made more sense. Maybe, 'Droopy tits' or 'Wrinkle puss' those would have worked too. You see when you speak you don't want to be considered foolish."
The boys stared at her, horrified, I was dumbstruck, Joe turned vermillion. She wasn't done, "I understand the need to express anger or disapproval, I just wish you kids would be a little more rigourous with your name calling." The door opened and she called after them, "Remember, 'Old Twat' works too."
The door closed and she looked at us and said, "I'm sorry about that but I hate that word that he used. I always like to get them back."
When she got off we saw her walk away with a spring in her step.
I have a new hero.
My week of encounters with elderly folks continues. (Warning: coarse language ... post will not be to everyone's taste.) We arrived in Vancouver at the hotel where I'll be working tomorrow. After finding a parking spot we got to the elevator and waited beside a woman of considerable age and, judging by her clothing, considerable wealth. She glanced a hello to us, we glanced back. Subtle social interactions really are in my skill set though many would disbelieve.
The elevator openned and there were two youths, maybe 15 or 16, slouching against the wall. The woman said to them, is this elevator going up or down. One of them said through a sneer, "Don't be so retarded, this is the bottom floor." She said, sweetly, "Oh, dear, I didn't know." It was a large elevator so we were all able to get on.
Just as the door closed she looked at the boy who had spoken and said, "If you wanted to be both accurate and offensive you should have said, 'old twat'. You see, I clearly don't have a developemental disability, so something about my gender would have made more sense. Maybe, 'Droopy tits' or 'Wrinkle puss' those would have worked too. You see when you speak you don't want to be considered foolish."
The boys stared at her, horrified, I was dumbstruck, Joe turned vermillion. She wasn't done, "I understand the need to express anger or disapproval, I just wish you kids would be a little more rigourous with your name calling." The door opened and she called after them, "Remember, 'Old Twat' works too."
The door closed and she looked at us and said, "I'm sorry about that but I hate that word that he used. I always like to get them back."
When she got off we saw her walk away with a spring in her step.
I have a new hero.
Friday, April 03, 2009
Charm School
Powell River has a very small shopping mall, but I shopped the hell out of it. I was booked to do a very rare evening presentation starting at 6 and didn't want to go back to the hotel between the afternoon and the evening workshops. So, we went to the mall and shopped. I bought stuff. This brings me a kind of happiness.
We stopped for a cup of tea and watched the world go by. An elderly woman in a scooter pulled in along side of us and took the seat right at the end of the table for 8. Shortly thereafter an elderly man walked by and she called out his name. He turned and looked at her. She spoke to him. You could see by the bewildered look on his face he had no idea who she was. She saw this too and she said, "I've just seen Irenie going by, she went to Shop and Save.'
He recognized his wife's name, knew were Shop and Save was - he was feeling on firmer ground but he still didn't know her. A second passes, his face transforms and he walks up to her and makes some jokes about his wife shopping and spending all the family wealth. It was tired patter, it was incredibly old fashioned, and in it's way it was entirely sweet.
He said his goodbyes and she turned to us and said, "The devil may have stolen his memory but God let him keep his charm.'
I said, "And charm will get you a long way."
"It will," she said, "it will."
We stopped for a cup of tea and watched the world go by. An elderly woman in a scooter pulled in along side of us and took the seat right at the end of the table for 8. Shortly thereafter an elderly man walked by and she called out his name. He turned and looked at her. She spoke to him. You could see by the bewildered look on his face he had no idea who she was. She saw this too and she said, "I've just seen Irenie going by, she went to Shop and Save.'
He recognized his wife's name, knew were Shop and Save was - he was feeling on firmer ground but he still didn't know her. A second passes, his face transforms and he walks up to her and makes some jokes about his wife shopping and spending all the family wealth. It was tired patter, it was incredibly old fashioned, and in it's way it was entirely sweet.
He said his goodbyes and she turned to us and said, "The devil may have stolen his memory but God let him keep his charm.'
I said, "And charm will get you a long way."
"It will," she said, "it will."
Thursday, April 02, 2009
What The Old Guy Said
"I'll tell you what it is," he said to me. I had noticed him and his wife right off. They parked right behind us on the boat, we both had easy access to the elevator that took travellers up to the passenger deck. They were both walkers with walkers but what with the wheelchair in the trunk of the car and my slow careful 'protect the knee at all costs' rising, they got to the elevator before us. We waved them on as there was no way we'd all fit in that tiny room.
We met them again in the cafeteria where I'd picked up a tea and parked at a table by the window. Our trips to British Columbia, even one's like this planned quickly, are wonderful. It feels like home here and riding the ferry system provides a view of the world that is hard to find elsewhere. I was sipping my tea and noticed them chowing down at the next table over. We nodded, friendly like.
I was talking with Joe about the amazing people who load these huge honking boats. When we buy our ticket we explain that I am a wheelchair user and they give us a placard that says 'Physically Disabled Person' which we put on the dash. we are directed to a special lane and then, when boarding, we put the car flashers on. As we enter the boat a ferryman or ferrywoman talks to us briefly asking what we need and then they direct us where to park and ensure that we have the space needed for me and the chair.
On our first trip out here as a wheelchair user I always worried that I'd get stuck on the car level because the cars are packed in so tightly. That has never happened, not once. I've travelled the system enough now to notice that my access is not by chance, it is part of an established pattern of caring and competence.
Again, on this small ferry, we had plent of room to get around the car, the people behind us, also needing something extra, did too. As we talked about it I wondered aloud what kind of training that they give these men and women who work for the system. We've never encountered attitude or hositility, we've never been made to feel in the way or a bother. That's remarkable.
The fellow sitting at the next table, was listening in to our conversation. I can't complain, i do that all the time too. He spoke up and said, "I'll tell you what it is, it's just decency. You can train people all they want but you need to hire decency. I've talked to some of these B.C. Ferries guys and, you know what, they're good, decent people."
He left me with a suggestion, "You can always find people who know their jobs, they are a dime a dozen, sift through those and find decent people. Then your work life will be a joy."
What a tremendous idea.
Hire decency, get respect.
We met them again in the cafeteria where I'd picked up a tea and parked at a table by the window. Our trips to British Columbia, even one's like this planned quickly, are wonderful. It feels like home here and riding the ferry system provides a view of the world that is hard to find elsewhere. I was sipping my tea and noticed them chowing down at the next table over. We nodded, friendly like.
I was talking with Joe about the amazing people who load these huge honking boats. When we buy our ticket we explain that I am a wheelchair user and they give us a placard that says 'Physically Disabled Person' which we put on the dash. we are directed to a special lane and then, when boarding, we put the car flashers on. As we enter the boat a ferryman or ferrywoman talks to us briefly asking what we need and then they direct us where to park and ensure that we have the space needed for me and the chair.
On our first trip out here as a wheelchair user I always worried that I'd get stuck on the car level because the cars are packed in so tightly. That has never happened, not once. I've travelled the system enough now to notice that my access is not by chance, it is part of an established pattern of caring and competence.
Again, on this small ferry, we had plent of room to get around the car, the people behind us, also needing something extra, did too. As we talked about it I wondered aloud what kind of training that they give these men and women who work for the system. We've never encountered attitude or hositility, we've never been made to feel in the way or a bother. That's remarkable.
The fellow sitting at the next table, was listening in to our conversation. I can't complain, i do that all the time too. He spoke up and said, "I'll tell you what it is, it's just decency. You can train people all they want but you need to hire decency. I've talked to some of these B.C. Ferries guys and, you know what, they're good, decent people."
He left me with a suggestion, "You can always find people who know their jobs, they are a dime a dozen, sift through those and find decent people. Then your work life will be a joy."
What a tremendous idea.
Hire decency, get respect.
Wednesday, April 01, 2009
Lines
If I were a teacher I'd make myself write, 'I am not a Docktor' a thousand times on the blackboard. Does anyone else ever keep making the same mistake over and over again? You'd think I'd learn. A decade or so ago I misdiagnosed the early stages of Flesh Eating Disease as a spider bite. Me + Google does not a Docktor make. I vowed not to make the same mistake again.
But I do. Constantly. Why go to the Doctor when I can be my own Docktor? So I suffer. In this case for two weeks. I twisted my knee some while back and it just didn't get better. In fact it was getting worse and worse. Pain radiating from my knee down the side of my leg into my foot. Deep grinding pain. I knew it was a twisted knee so I started taking Extra Strength Excederin, at first one or two but later by the handsfull.
By the weekend I'd numbed the pain, but also my skin, my senses and my ability to form sentences. I took Monday off because I felt just plain awful. The pain was back, the pills weren't working. Finally Joe said ... ENOUGH.
A couple of hours later I have a perscription for the problem (which wasn't, as it turns out, a twisted knee) and I'm on these amazing meds - you know the kind that actually work. They take away the pain, promote healing and don't leave me feeling like I've anaethsetized (sp?) my common sense along with everything else.
So ... here goes ...
I am not a Docktor.
I am not a Docktor.
I am not a Docktor.
But I do. Constantly. Why go to the Doctor when I can be my own Docktor? So I suffer. In this case for two weeks. I twisted my knee some while back and it just didn't get better. In fact it was getting worse and worse. Pain radiating from my knee down the side of my leg into my foot. Deep grinding pain. I knew it was a twisted knee so I started taking Extra Strength Excederin, at first one or two but later by the handsfull.
By the weekend I'd numbed the pain, but also my skin, my senses and my ability to form sentences. I took Monday off because I felt just plain awful. The pain was back, the pills weren't working. Finally Joe said ... ENOUGH.
A couple of hours later I have a perscription for the problem (which wasn't, as it turns out, a twisted knee) and I'm on these amazing meds - you know the kind that actually work. They take away the pain, promote healing and don't leave me feeling like I've anaethsetized (sp?) my common sense along with everything else.
So ... here goes ...
I am not a Docktor.
I am not a Docktor.
I am not a Docktor.
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