Every now and then I find a really good floor.
I never noticed floors before disability. Oh, I guess I did in kind of an oblique sense - they were there, I walked on them. But I didn't notice their colour, their texture, the hardness of the wood, the softness of the carpet. I know that in the north they have twenty words for snow, well, we wheelchair users could have an equal number of words for describing a floor.
For the uninitiated, the type of floor affects the 'roll-ability' of the wheelchair. Carpets typically make pushing harder, though there are some carpets that have less 'stickiness' than others. Wood is good, some linoleums are awesome, some are awful. Floors don't seem to be taken into consideration regarding accessibility. They should be. For some reason accessible rooms are almost always down long hallways, thick plush carpet that is aimed a welcoming weary travellers makes my arms and shoulders scream in pain.
So a good floor is incredible. And I've been on some good floors. The floor in the Imperial War Museum in Manchester, that's a good floor. Although, it has a slope to it so it's really good one way, not so good coming back. The floor in my office is a good floor, but it's hard to say because with the placement of doors I can grab and hurl myself along quickly. Anyways, I know floors.
On our way home from Butler on Friday, we stopped at a Wegman's in Erie. We wanted to pick up a few groceries to take home and we wanted a brief 'get out of the car' respite. Joe rolled me up the slight incline and then headed to the bathroom, Joe knows bathrooms up and down the American Interstate system. As he went I told him I'd go and check out the hot soups with an eye to having dinner. I gave one push and I flew. This was a floor! A really good floor! It was a floor that was worthy of an exclamation mark!!
By the time Joe came back I'd scoped out the soups, the salad bar and found the tofu in garlic sauce. I was having a great time. We went and found what we wanted. Looked around the 'seasonal' aisle - my favourite in any store. And then headed to the cash. Joe took the bags to check in and I said, 'I'll meet you at the door, I want to push around a bit.' Joe remarked that we were along way from the door. I remarked, 'Not on this floor we aren't.'
And off I went. The store wasn't as crowded as we expected it to be, being a Friday and all, so I was able to get up a head of steam. I was going very quickly when I saw that I'd have to turn to avoid a display and be oriented correctly for the exit door. Instead of slowing I gave a few more hard pushes and then grabbed my left wheel to occasion a right turn. I turned sharply.
I noticed a little boy watching me as his mother was picking up produce. I heard him say to his mother as they walked away.
'Can I have a wheelchair when I grow up mom?'
I grinned and headed out the door and down to the car.
Gotta love a good floor.
Sunday, June 13, 2010
Saturday, June 12, 2010
Double Dare
If I could, I would dare them too look in her eyes. There is hurt there. Deep, deep hurt. I would challenge them to look deep in those eyes, oh trust me, I would if I could.
She is reaching out from behind others. Her staff has stopped to speak to me, thank me for my lecture. I had just spoken about the teasing and bullying of people with disabilities. About the pain that that damn word 'ret@rd' causes. About the need for people with disabilities to have skills to understand teasing and the need for us all to rise in protest at the use of hateful words used with the intention of hurt.
Her hand comes towards me tentatively. Like she's reached out before and been rejected. Like she expected her greeting to be turned away. Like hurt was always a possibility in every interaction, at any time.
Oh I dare them. Those teenagers who fling the word 'ret@rd' at each other. Who justify themselves by saying that it doesn't mean anything. I dare them to look in her eyes and tell her that their words don't slap her hard across the face. I dare those disgusting cowards to stand in front of her and excuse their words as meaningless. Oh. Man. I dare them.
I take her hand and the touch gives her courage. She pulls closer to me. She wants to speak. Her voice is soft. It is the voice of someone too often told to be quiet. It is the voice of someone seldom sought for opinion. It is the voice of someone with experience and wisdom but without trust in herself. "I get called that word all the time." She can't even say the word. And her eyes. Oh, her eyes. They fill to the brim with tears. But tears do not fall.
Oh I dare them. Those comedians who use the word 'ret@rd' to full effect. To make themselves a rebel. To make themselves bad boys, bad girls. Oh look at me, I defy political correctness. Oh look at me, I'm SO outrageous. Yeah, they find themselves funny. They justify what they do by saying that you can't censor art. I dare those disgusting cowards to hear the pain in her voice. I dare them to look in her eyes and explain how abuse is art. I dare them to tell a 'ret@rd' joke to her, even in her presence. Cowards. Liars. Bigots. Oh. Man. I dare them.
My heart is in my throat. I tell her that I know that words hurt. That I hope that she learned some new ways of thinking today. That I hope that one day that word will no longer be said. That one day she will be safe from the word that is like a heart seeking missile .. words that aim and penetrate and explode self esteem. She says simply, 'I never want to hear it again.'
Oh I dare them. Those who casually use words of hate. Who think that no one hears them when they utter hateful words. Those who believe that no one around them has a child with a disability, no one around them has a friend with a disability, and of course, no one around them has a disability. Disgusting ignorant jerks. Words. Hurt. Children of three know this. I dare them. I dare them to see her eyes. I dare them to see how she walks. Carefully, as if each step could bring disaster. As if there is risk everywhere. As if she, while she lives the life she lives in the body she has, is never safe.
I dare them to realize that her hurt is their handiwork.
I dare them to take even one single step in her shoes.
I. Dare. Them.
She is reaching out from behind others. Her staff has stopped to speak to me, thank me for my lecture. I had just spoken about the teasing and bullying of people with disabilities. About the pain that that damn word 'ret@rd' causes. About the need for people with disabilities to have skills to understand teasing and the need for us all to rise in protest at the use of hateful words used with the intention of hurt.
Her hand comes towards me tentatively. Like she's reached out before and been rejected. Like she expected her greeting to be turned away. Like hurt was always a possibility in every interaction, at any time.
Oh I dare them. Those teenagers who fling the word 'ret@rd' at each other. Who justify themselves by saying that it doesn't mean anything. I dare them to look in her eyes and tell her that their words don't slap her hard across the face. I dare those disgusting cowards to stand in front of her and excuse their words as meaningless. Oh. Man. I dare them.
I take her hand and the touch gives her courage. She pulls closer to me. She wants to speak. Her voice is soft. It is the voice of someone too often told to be quiet. It is the voice of someone seldom sought for opinion. It is the voice of someone with experience and wisdom but without trust in herself. "I get called that word all the time." She can't even say the word. And her eyes. Oh, her eyes. They fill to the brim with tears. But tears do not fall.
Oh I dare them. Those comedians who use the word 'ret@rd' to full effect. To make themselves a rebel. To make themselves bad boys, bad girls. Oh look at me, I defy political correctness. Oh look at me, I'm SO outrageous. Yeah, they find themselves funny. They justify what they do by saying that you can't censor art. I dare those disgusting cowards to hear the pain in her voice. I dare them to look in her eyes and explain how abuse is art. I dare them to tell a 'ret@rd' joke to her, even in her presence. Cowards. Liars. Bigots. Oh. Man. I dare them.
My heart is in my throat. I tell her that I know that words hurt. That I hope that she learned some new ways of thinking today. That I hope that one day that word will no longer be said. That one day she will be safe from the word that is like a heart seeking missile .. words that aim and penetrate and explode self esteem. She says simply, 'I never want to hear it again.'
Oh I dare them. Those who casually use words of hate. Who think that no one hears them when they utter hateful words. Those who believe that no one around them has a child with a disability, no one around them has a friend with a disability, and of course, no one around them has a disability. Disgusting ignorant jerks. Words. Hurt. Children of three know this. I dare them. I dare them to see her eyes. I dare them to see how she walks. Carefully, as if each step could bring disaster. As if there is risk everywhere. As if she, while she lives the life she lives in the body she has, is never safe.
I dare them to realize that her hurt is their handiwork.
I dare them to take even one single step in her shoes.
I. Dare. Them.
Friday, June 11, 2010
A Hand Went Up
Questions.
The mighty can fall in the face of a simple question
Years ago,I was at a conference giving a session and then tromped off, like everyone else, excitedly to hear the keynote speaker. He was and still is a very famous guy and has accomplished much. His talk was brilliant, funny, insightful. He had to stop to absorb round after round of applause. As it happened he finished maybe 5 or 6 minutes early. The MC said, 'Ah we have time for one maybe two questions.' There was that horrible pause as no one put there hand up. Then one fellow, a guy in a wheelchair called, 'here' ... 'here'. He'd had his hand up but not been seen. After acknowledgment he asked, 'You've achieved wonderful things for you, and that's good. But can you name something that you personally have done to make the world better, easier for people with disabilities. Something you did, not your organization, not your friends, you ... what have you done?'
The speaker was stopped. There was a long pause and finally the MC said, 'Well, we need to move along, with the day's agenda.' The whole conference changed. I said to Joe that I never want to get caught like that, ever. I always want to be doing something in the 'now' that I can report on if asked, if challenged.
Then yesterday in Camp Hill in PA, I was introduced with a wonderfully kind introduction and I didn't even notice that it was an introduction that, atypically, did not mention what I did or what I have achieved. I'm OK with that, the introduction was less formal and more fun. But when it came time for questions, a hand went up at the back, I called for the question. A man with a disability stood up. His question, 'What do you do? How do you help people?'
I understood right then the paralysis that hit that speaker years ago. I froze for a second. Then I gave an answer and half way through the answer, I realized I was using the language of lecture, the non-disabled people would understand, not him. Who was I justifying myself to. So at the end, I acknowledged my mistake. 'I said that in too many words, to be clear, I help people to be safe, I help people to have good relationships and I help people to feel good about themselves.' He nodded and said thanks.
I took a deep breath.
Two different conferences set apart by years. In both, people with disability called the speaker to account. That voice, the authentic voice of someone with a disability, that's the voice that asks the ultimate question of all of us who say we serve ... what have you done ....
The mighty can fall in the face of a simple question
Years ago,I was at a conference giving a session and then tromped off, like everyone else, excitedly to hear the keynote speaker. He was and still is a very famous guy and has accomplished much. His talk was brilliant, funny, insightful. He had to stop to absorb round after round of applause. As it happened he finished maybe 5 or 6 minutes early. The MC said, 'Ah we have time for one maybe two questions.' There was that horrible pause as no one put there hand up. Then one fellow, a guy in a wheelchair called, 'here' ... 'here'. He'd had his hand up but not been seen. After acknowledgment he asked, 'You've achieved wonderful things for you, and that's good. But can you name something that you personally have done to make the world better, easier for people with disabilities. Something you did, not your organization, not your friends, you ... what have you done?'
The speaker was stopped. There was a long pause and finally the MC said, 'Well, we need to move along, with the day's agenda.' The whole conference changed. I said to Joe that I never want to get caught like that, ever. I always want to be doing something in the 'now' that I can report on if asked, if challenged.
Then yesterday in Camp Hill in PA, I was introduced with a wonderfully kind introduction and I didn't even notice that it was an introduction that, atypically, did not mention what I did or what I have achieved. I'm OK with that, the introduction was less formal and more fun. But when it came time for questions, a hand went up at the back, I called for the question. A man with a disability stood up. His question, 'What do you do? How do you help people?'
I understood right then the paralysis that hit that speaker years ago. I froze for a second. Then I gave an answer and half way through the answer, I realized I was using the language of lecture, the non-disabled people would understand, not him. Who was I justifying myself to. So at the end, I acknowledged my mistake. 'I said that in too many words, to be clear, I help people to be safe, I help people to have good relationships and I help people to feel good about themselves.' He nodded and said thanks.
I took a deep breath.
Two different conferences set apart by years. In both, people with disability called the speaker to account. That voice, the authentic voice of someone with a disability, that's the voice that asks the ultimate question of all of us who say we serve ... what have you done ....
Thursday, June 10, 2010
So ...?
I was sitting out by the car guarding the luggage that had yet to be loaded into the trunk. Joe was up getting more luggage and I was sitting like a guard dog ensuring that all was safe. We were in the parking lot just by the building. The day, sunny and warm. I watched as a fellow drove a van into the parking lot and then managed to back it into a fairly small parking space. I think parking should be an Olympic sport and if it was, he would have got at least into the final round.
He got out and nodded to me as he walked by to the machine to get a parking permit for the van. He was behind me and I could hear him as he put the coin into the machine. I could also hear the unmistakable sound of the coin dropping right through and into the change dispenser. He uttered a mild curse and headed back to his car. He stopped and said, 'Would you happen to have a toonie? The machine doesn't like the one I used.' I said, 'It can be temperamental. I don't think I have change but let me check.' I pulled my wallet out and all I had was a nickel. You can't park for seven seconds in that lot for a nickel. He said, 'That's OK, I'll check the van.' I said, 'Good luck.'
He came back from his van holding up a toonie for me to see. He walked by and then dropped the coin in the machine. This time it worked and the permit was printed out. On his way by he punched me in the shoulder and said, 'Hey thanks for trying to get me change.' I said, 'No problem.'
That's it.
That's all that happened.
Right now you are thinking, 'And so? Why is this on a disability blog?'
Well, it's here because it's just such a normal, everyday interaction. An interaction between two ordinary people going about an ordinary day. Nothing exceptional. Nothing 'special'. I can't tell you how rare it is to have just a simple interaction that isn't tinged with something quite intangible but also something quite prominent that is related to the fact that I am sitting, others are standing. Disabled people ... I need to be careful here, I don't speak for all ... this disabled person doesn't want special. I want to take a pair of scissors and cut the extra off the ordinary and then just move on.
It was nice. Refreshing. To meet someone with the capacity to interact beyond difference, beyond extraordinary ... and into the land of everyday, typical, how ya doing bud, ordinary.
I want more.
He got out and nodded to me as he walked by to the machine to get a parking permit for the van. He was behind me and I could hear him as he put the coin into the machine. I could also hear the unmistakable sound of the coin dropping right through and into the change dispenser. He uttered a mild curse and headed back to his car. He stopped and said, 'Would you happen to have a toonie? The machine doesn't like the one I used.' I said, 'It can be temperamental. I don't think I have change but let me check.' I pulled my wallet out and all I had was a nickel. You can't park for seven seconds in that lot for a nickel. He said, 'That's OK, I'll check the van.' I said, 'Good luck.'
He came back from his van holding up a toonie for me to see. He walked by and then dropped the coin in the machine. This time it worked and the permit was printed out. On his way by he punched me in the shoulder and said, 'Hey thanks for trying to get me change.' I said, 'No problem.'
That's it.
That's all that happened.
Right now you are thinking, 'And so? Why is this on a disability blog?'
Well, it's here because it's just such a normal, everyday interaction. An interaction between two ordinary people going about an ordinary day. Nothing exceptional. Nothing 'special'. I can't tell you how rare it is to have just a simple interaction that isn't tinged with something quite intangible but also something quite prominent that is related to the fact that I am sitting, others are standing. Disabled people ... I need to be careful here, I don't speak for all ... this disabled person doesn't want special. I want to take a pair of scissors and cut the extra off the ordinary and then just move on.
It was nice. Refreshing. To meet someone with the capacity to interact beyond difference, beyond extraordinary ... and into the land of everyday, typical, how ya doing bud, ordinary.
I want more.
Wednesday, June 09, 2010
Why They Call it a Joy Stick
I'd had a particularly dark moment. I was coming into the elevator on my way home, I was fighting tears, things seemed very bleak. The door closed behind me and even though Joe couldn't see my face he could tell how I was feeling. Although we both know that the elevators all have cameras recording everything that happens behind closed doors, he reached down and took hold of my hand.
This is a nice gesture.
It was supposed to be.
There was a problem.
My hand was resting on the joystick controller of my power wheelchair. It is very, very sensitive to movement. The slight weight of Joe's hand pressed my hand down on the control and my chair leapt into action and I crashed into the wall in front of me. Joe was startled but instead of letting go, which would have been nice, he pulled his hand back and I careened back into the door behind me. This caused him to shout and pressed my hand again. Again I shot back into the wall in front of me.
This all happened so fast and I was so startled that I couldn't yell, 'Let go of my hand!' But I gathered my wits which had been shaken, not stirred, and yelled 'Let go for God's sake.' Joe dropped my hand and my chair came to rest. Joe fell back against the wall laughing and when the door opened there were two people waiting to get on. They had to wait as I could no longer drive as I was rocking back and forth with laughter.
Finally I got off the elevator and then stopped to wipe new, fresh, tears. Even though we were still in the hallway, I felt the sun was shining again.
Darkness, though it seems impenetrable, though it seems like it has full control, is extremely fragile. A giggle can crack it, a laugh can blast it away. I need to remember that humour is a powerful, powerful tool. Humour is a wonderful, wonderful gift.
There has been sunshine every day since.
This is a nice gesture.
It was supposed to be.
There was a problem.
My hand was resting on the joystick controller of my power wheelchair. It is very, very sensitive to movement. The slight weight of Joe's hand pressed my hand down on the control and my chair leapt into action and I crashed into the wall in front of me. Joe was startled but instead of letting go, which would have been nice, he pulled his hand back and I careened back into the door behind me. This caused him to shout and pressed my hand again. Again I shot back into the wall in front of me.
This all happened so fast and I was so startled that I couldn't yell, 'Let go of my hand!' But I gathered my wits which had been shaken, not stirred, and yelled 'Let go for God's sake.' Joe dropped my hand and my chair came to rest. Joe fell back against the wall laughing and when the door opened there were two people waiting to get on. They had to wait as I could no longer drive as I was rocking back and forth with laughter.
Finally I got off the elevator and then stopped to wipe new, fresh, tears. Even though we were still in the hallway, I felt the sun was shining again.
Darkness, though it seems impenetrable, though it seems like it has full control, is extremely fragile. A giggle can crack it, a laugh can blast it away. I need to remember that humour is a powerful, powerful tool. Humour is a wonderful, wonderful gift.
There has been sunshine every day since.
Tuesday, June 08, 2010
A Couple of Blog Announcements
It's been very odd not blogging over the last few days. I've both enjoyed the little break and missed the routine of writing at the same time. This was an important time for me to be away, however, and it was the right decision. I would not have been in the frame of mind necessary to write. I would have written things too wildly personal to be appropriate for public consumption - boundaries are a things of beauty. But I found I lived each day with slightly less intensity and much less observation and introspection. And, I'm ready to go back to being a regular poster. Starting tomorrow, Rolling Around in My Head will be back in business.
Too, I wanted to remind other bloggers that I will be hosting this months Disability Blog Carnival and the topic is Pride. The goal is to have others submit the blog post they are most proud of, not the one that got the most comments or notice, but the one they feel best expressed something about the disability experience. I need the posts by the end of next week so that I can put something together by the end of the month, the 27th to be exact.
See you tomorrow with a regular blog post.
Too, I wanted to remind other bloggers that I will be hosting this months Disability Blog Carnival and the topic is Pride. The goal is to have others submit the blog post they are most proud of, not the one that got the most comments or notice, but the one they feel best expressed something about the disability experience. I need the posts by the end of next week so that I can put something together by the end of the month, the 27th to be exact.
See you tomorrow with a regular blog post.
Thursday, June 03, 2010
Blatent Self Promotion and a Blog Announcement
I'm going to be doing two series of trainings, one on Behaviour and one on Sexuality, up in the Peterborough area this summer. I wanted to let readers from Ontario know so that those who want to register can do so. Go ahead and call Patty Barnes to get more information or to register.
Note to Readers: Joe and I have a very busy couple of weeks ahead of us with lots to accomplish. My posting here may be sporadic or may even stop for a few days. I've been writing this blog for a long time and I think we could all use a few days break.
For The First Time in The Peterborough Area!!!
BEHAVIOUR MANAGEMENT SERVICES SUMMER INSTITUTE
Sex, Sexuality and Sex Education
The issue of sexuality of people with disabilities still brings confusion, disagreement and concerns. This four day course will bring clarity to the issue by dealing with myths and misconceptions and providing concrete tips and strategies for assisting people with disabilities. A fast and fun four days that is perfect for front line staff who are working directly with people with disabilities who have questions or concerns regarding sexuality. Perfect for those needing information. Perfect for those wanting to develop their skills. Perfect for those who want to feel more comfortable with those in their care.
Instructor: Dave Hingsburger
The Dates:
July 22: Myths and Misconceptions
July 23: Healthy Sexuality
July 28: Preventing Victimization
July 29: Sex Education
The Cost:
$325 per person
The Location:
Comfort Inn and Suites - Peterborough
1209 Lansdowne St. W.
Register by calling or emailing Patty Barnes
705.728.9143 x0
pbarnes@yorkcentral.on.ca
For The First Time in The Peterborough Area!!!
***********************************************
BEHAVIOUR MANAGEMENT SERVICES SUMMER INSTITUTE
BEHAVIOUR SELF!!
Problem behaviour can drain staff energy and destroy the moral of a team. This four day seminar is aimed at giving front line staff new understanding of problem behaviour. The workshop is practical, fun, and inspiring. It aims at teaching tools and techniques to understand and deal with behaviour that can be confusing and frightening. This is our eighth year of running the institution and the first year we have located the series in the Peterborough area. Perfect training for staff who work with individuals with problem behaviour! Perfect training for staff who wish to increase skills and capacity to serve a broad range of individuals! Perfect for staff who simply need a few new ideas!
Instructed by: Dave Hingsburger
The Dates:
July 8th: Communication
July 9th: Understanding Problem Behaviour
July 15th: Developing Positive Strategies
July 16th: Putting it All Together
The Cost:
$325 per person
The Location:
Comfort Hotel and Suites - Peterborough
1209 Lansdowne St. W.
Register Today by calling
Patty Barnes 705-728-9143 x0
or email at pbarnes@yorkcentral.on.ca
Note to Readers: Joe and I have a very busy couple of weeks ahead of us with lots to accomplish. My posting here may be sporadic or may even stop for a few days. I've been writing this blog for a long time and I think we could all use a few days break.
For The First Time in The Peterborough Area!!!
BEHAVIOUR MANAGEMENT SERVICES SUMMER INSTITUTE
Sex, Sexuality and Sex Education
The issue of sexuality of people with disabilities still brings confusion, disagreement and concerns. This four day course will bring clarity to the issue by dealing with myths and misconceptions and providing concrete tips and strategies for assisting people with disabilities. A fast and fun four days that is perfect for front line staff who are working directly with people with disabilities who have questions or concerns regarding sexuality. Perfect for those needing information. Perfect for those wanting to develop their skills. Perfect for those who want to feel more comfortable with those in their care.
Instructor: Dave Hingsburger
The Dates:
July 22: Myths and Misconceptions
July 23: Healthy Sexuality
July 28: Preventing Victimization
July 29: Sex Education
The Cost:
$325 per person
The Location:
Comfort Inn and Suites - Peterborough
1209 Lansdowne St. W.
Register by calling or emailing Patty Barnes
705.728.9143 x0
pbarnes@yorkcentral.on.ca
For The First Time in The Peterborough Area!!!
***********************************************
BEHAVIOUR MANAGEMENT SERVICES SUMMER INSTITUTE
BEHAVIOUR SELF!!
Problem behaviour can drain staff energy and destroy the moral of a team. This four day seminar is aimed at giving front line staff new understanding of problem behaviour. The workshop is practical, fun, and inspiring. It aims at teaching tools and techniques to understand and deal with behaviour that can be confusing and frightening. This is our eighth year of running the institution and the first year we have located the series in the Peterborough area. Perfect training for staff who work with individuals with problem behaviour! Perfect training for staff who wish to increase skills and capacity to serve a broad range of individuals! Perfect for staff who simply need a few new ideas!
Instructed by: Dave Hingsburger
The Dates:
July 8th: Communication
July 9th: Understanding Problem Behaviour
July 15th: Developing Positive Strategies
July 16th: Putting it All Together
The Cost:
$325 per person
The Location:
Comfort Hotel and Suites - Peterborough
1209 Lansdowne St. W.
Register Today by calling
Patty Barnes 705-728-9143 x0
or email at pbarnes@yorkcentral.on.ca
Wednesday, June 02, 2010
Tying Up Loose Ends
Several people have asked me to fill them in on what happened, sometimes I don't follow up on blog posts and they wanted all the scoop, ok, well, you asked ...
Feces Happens:
I got the weirdest letter from the 'poop people' and they told me that my 'Fecal Occult' test was negative. I have to admit that ... um ... I had no idea that the Occult was involved in the process - although I'm not surprised. I mean witches cook with 'eye of newt' why not 'poo of dave'? Anyways the letter told me that my poo was negative/normal. Then they went on for several paragraphs telling me about everything that could go wrong with poo and asked me to see the doctor if ... like ... my poo starts talking or whatever.
So, negative.
Shit Happens:
The hotel that gave away my accessible room and I came to an agreement. After much too-ing and fro-ing with phone calls I spoke to a really nice guy there. He totally understood the issue and outlined how they could assure that it wouldn't happen to me or any other disabled person. I was wondering how come he so clearly got it when others didn't when he disclosed that he was the parent of a child with a disability and knows the importance of accessibility. I stayed there again on the way home with no incident. I really think it's all going to be ok.
So, positive.
I guess that's yin and yang ... and now you are all, disturbingly, up to date.
Feces Happens:
I got the weirdest letter from the 'poop people' and they told me that my 'Fecal Occult' test was negative. I have to admit that ... um ... I had no idea that the Occult was involved in the process - although I'm not surprised. I mean witches cook with 'eye of newt' why not 'poo of dave'? Anyways the letter told me that my poo was negative/normal. Then they went on for several paragraphs telling me about everything that could go wrong with poo and asked me to see the doctor if ... like ... my poo starts talking or whatever.
So, negative.
Shit Happens:
The hotel that gave away my accessible room and I came to an agreement. After much too-ing and fro-ing with phone calls I spoke to a really nice guy there. He totally understood the issue and outlined how they could assure that it wouldn't happen to me or any other disabled person. I was wondering how come he so clearly got it when others didn't when he disclosed that he was the parent of a child with a disability and knows the importance of accessibility. I stayed there again on the way home with no incident. I really think it's all going to be ok.
So, positive.
I guess that's yin and yang ... and now you are all, disturbingly, up to date.
Tuesday, June 01, 2010
Lolly Pop
Years ago I made a mistake. This was not an unusual occurrence. I had worked for a particularly long time with a young fellow who had a fairly serious problem with temper. His mother and I met weekly as I reviewed how the behaviour approach was going and made plans for teaching her son some new skills. He did well, needing simply consistency and a bit of reinforcement. I got to enjoy the meetings and really connected with both mother and child. When my involvement came to an end I had a 'termination meeting' with both. The little boy had bought me a little gift, something very small, a little figurine of a dog. It couldn't have cost more than five dollars.
He gave it to me with a sense of real drama, very proud of having a gift to give. I looked at it and thanked him for the gift. Then I explained how I couldn't take a gift as it was inappropriate of me to accept such an offering. He pressed me to take it because he had picked it out knowing that I liked dogs. I quietly but firmly let him know that I couldn't take his gift. I left feeling mother's disapproving gaze on my back.
Years later I would be working with people with disabilities who are lonely. People who want relationships. People who lack the skills necessary to form relationships - people who had learned about taking not about giving, people who had learned to consider themselves and not others, people who had systematically been trained to be selfish in their approach to human relationships. I remembered, then, a little boy who tried to give and who had his gift turned down. It was a mistake I really regretted.
But it wasn't one I made twice.
Yesterday morning we were joined for breakfast at the hotel by Mike and his family. The evening before we had given Ruby and Sadie, the kids, a few presents that we had picked up on the road. Ruby loves presents, of course, and her enjoyment of our small gifts was reward enough for having bought them. She came to breakfast carrying a large pink purse that she had insisted on bringing. Her mom and dad aren't sure where she got it but she loves that purse.
As we were all talking, Ruby had finished her cereal. She slid off her chair and opened her purse and fished inside it. Then her hands full she came over and stacked three pennies by my plate followed by a lollipop. Quietly she went over to Joe's plate and, again, stacked three pennies and layed a lollipop. Once done, she went back to her seat and climbed back up grinning widely.
Conversation done, I picked up my three pennies and the lollipop and thanked Ruby. Her mother and father didn't realize that she had gone into her stash of candy to get us these treats. She beamed as we thanked her and saw us each pocket three pennies and a lollipop.
We may have left with six cents more than we came with - but Ruby left richer.
You live.
You learn.
He gave it to me with a sense of real drama, very proud of having a gift to give. I looked at it and thanked him for the gift. Then I explained how I couldn't take a gift as it was inappropriate of me to accept such an offering. He pressed me to take it because he had picked it out knowing that I liked dogs. I quietly but firmly let him know that I couldn't take his gift. I left feeling mother's disapproving gaze on my back.
Years later I would be working with people with disabilities who are lonely. People who want relationships. People who lack the skills necessary to form relationships - people who had learned about taking not about giving, people who had learned to consider themselves and not others, people who had systematically been trained to be selfish in their approach to human relationships. I remembered, then, a little boy who tried to give and who had his gift turned down. It was a mistake I really regretted.
But it wasn't one I made twice.
Yesterday morning we were joined for breakfast at the hotel by Mike and his family. The evening before we had given Ruby and Sadie, the kids, a few presents that we had picked up on the road. Ruby loves presents, of course, and her enjoyment of our small gifts was reward enough for having bought them. She came to breakfast carrying a large pink purse that she had insisted on bringing. Her mom and dad aren't sure where she got it but she loves that purse.
As we were all talking, Ruby had finished her cereal. She slid off her chair and opened her purse and fished inside it. Then her hands full she came over and stacked three pennies by my plate followed by a lollipop. Quietly she went over to Joe's plate and, again, stacked three pennies and layed a lollipop. Once done, she went back to her seat and climbed back up grinning widely.
Conversation done, I picked up my three pennies and the lollipop and thanked Ruby. Her mother and father didn't realize that she had gone into her stash of candy to get us these treats. She beamed as we thanked her and saw us each pocket three pennies and a lollipop.
We may have left with six cents more than we came with - but Ruby left richer.
You live.
You learn.
Monday, May 31, 2010
Today's The Day
The room is suddenly quiet.
We stopped in Ottawa on the way home from lecturing in the Maritimes. It was the perfect opportunity to visit with Mike, Marissa, Ruby and Sadie. We had a full day of movies and swimming and pizza and talking. It was a wonderful way to end a wonderful trip. I'd left Fredericton and Summerside feeling like we were part of one huge family of service and then came to Ottawa and experienced a very different kind of family.
But.
We're going home. I've always liked going home after a trip and my disability has intensified that a hundred-thousand fold. Home is more than a place where we are surrounded by the familiar and feel safe in four walls. Home is a place where I am least faced with access issues, everything is user friendly. From the unmentionables in the washroom to the very visible in the front room, my home is a place where Dave's mobility is maximized because everything is tailor made to work for me.
Home now means a place where there my disability is cause for no battle, my disability is cause for no grudging accomodation, my disability is, instead, a foundation for a very personal design. It's awesome. It's a place of welcome and a place of rest. I love going home.
Travelling means never knowing what's waiting around the corner. Home means never fearing what's around the corner - cause what waits for you, was made for you.
Ah.
Home.
We stopped in Ottawa on the way home from lecturing in the Maritimes. It was the perfect opportunity to visit with Mike, Marissa, Ruby and Sadie. We had a full day of movies and swimming and pizza and talking. It was a wonderful way to end a wonderful trip. I'd left Fredericton and Summerside feeling like we were part of one huge family of service and then came to Ottawa and experienced a very different kind of family.
But.
We're going home. I've always liked going home after a trip and my disability has intensified that a hundred-thousand fold. Home is more than a place where we are surrounded by the familiar and feel safe in four walls. Home is a place where I am least faced with access issues, everything is user friendly. From the unmentionables in the washroom to the very visible in the front room, my home is a place where Dave's mobility is maximized because everything is tailor made to work for me.
Home now means a place where there my disability is cause for no battle, my disability is cause for no grudging accomodation, my disability is, instead, a foundation for a very personal design. It's awesome. It's a place of welcome and a place of rest. I love going home.
Travelling means never knowing what's waiting around the corner. Home means never fearing what's around the corner - cause what waits for you, was made for you.
Ah.
Home.
Sunday, May 30, 2010
I Wonder
Oh man, am I having trouble writing this post!
I am in Quebec City and I couldn`t get my computer to hook on-line when we checked in last night. I was too tired to come down and write something in the hotel business center so I thought I`d just wait until the morning. And here I am, sitting in the business center with people all around me quickly typing and getting things done, and me ... well not quite the same picture.
You see the keyboard has a French configuration, which makes sense because I`m in Quebec but it took me ten minutes of searching before I gave up finding the @ symbol. Oh, it`s there on the keyboard but when you press it you get " not @. This means I cannot check my email, I cannot sign on to Blogger. I can do very little of what I want to do. I tried asking the person next to me but he just smiled a nice smile and indicated that he didn`t speak English.
The fellow on the other side just stared hard at his computer, I could tell he wasn`t in to being asked. So I called the front desk and they were very busy but would come and help. Finally, I found where the @ was. But for that whole time I sat feeling quite incompetent while surrounded with competence. I felt what it was like to have to wait for help while others did things independently.
I wonder at the amazing spirit of people with intellectual disabilities who seem to cope with this situation which has me screaming inside. I wonder if their `coping` so well sometimes leaves me forgetting how big a deal it is to have a disability that reduces ability to do some very basic things. I wonder if their patience with the rest of us leaves me without appreciation for what that patience costs.
I wonder...
(I just did spell check on this and as the computer is set to a French configuration, it highlighted every word as spelled wrong ... funny or what)
I am in Quebec City and I couldn`t get my computer to hook on-line when we checked in last night. I was too tired to come down and write something in the hotel business center so I thought I`d just wait until the morning. And here I am, sitting in the business center with people all around me quickly typing and getting things done, and me ... well not quite the same picture.
You see the keyboard has a French configuration, which makes sense because I`m in Quebec but it took me ten minutes of searching before I gave up finding the @ symbol. Oh, it`s there on the keyboard but when you press it you get " not @. This means I cannot check my email, I cannot sign on to Blogger. I can do very little of what I want to do. I tried asking the person next to me but he just smiled a nice smile and indicated that he didn`t speak English.
The fellow on the other side just stared hard at his computer, I could tell he wasn`t in to being asked. So I called the front desk and they were very busy but would come and help. Finally, I found where the @ was. But for that whole time I sat feeling quite incompetent while surrounded with competence. I felt what it was like to have to wait for help while others did things independently.
I wonder at the amazing spirit of people with intellectual disabilities who seem to cope with this situation which has me screaming inside. I wonder if their `coping` so well sometimes leaves me forgetting how big a deal it is to have a disability that reduces ability to do some very basic things. I wonder if their patience with the rest of us leaves me without appreciation for what that patience costs.
I wonder...
(I just did spell check on this and as the computer is set to a French configuration, it highlighted every word as spelled wrong ... funny or what)
Saturday, May 29, 2010
Now You See Him...
Joe wanted to get a haircut and we noticed on the way into Walmart in Fredericton in New Bruswick that there was a hair cutting place just inside the door. I don't have much hair and wasn't in need of a trim so I suggested that Joe let me off over by the clothing section as I wanted to see about getting Joe a new pair of shorts. He left and I managed for find him a pair of shorts and a shirt, Mike a new shirt, Marissa a couple of blouses. I was a shopping machine. I didn't have a bag so I draped them over me and then decided to head over to the card section of the store to look for a Father's Day card.
It was a very long push and twice I dropped shirts and had to seek help from the Walmartians who wandered by. I got myself there by strength of shoulders and strength of will. I wandered around there and found a funny card for my dad and I tucked it in with the pile on me. I must have looked like a laundry hamper pushing itself through the store.
By now I was wondering what had happened to Joe. I hadn't heard any sirens so I knew that he hadn't had his jugular sliced. I thought I'd push back towards the cash registers so that he could easily find me. Finally he appeared coming down and aisle to my right. He said he'd been looking for fifteen minutes. He didn't think that I'd head that far away.
Apparently he asked three or four of the staff there if they'd seen a big guy in a wheelchair, they all said that they'd seen no one of my description. How could that be, it wasn't a huge store! I guess I'm just not as visible as I think I am.
Or he should have asked, 'Have you seen a stack of merchandise wheeling around the store.' I think that might have gotten a more positive response.
Good old invisible me. It always surprises me.
It was a very long push and twice I dropped shirts and had to seek help from the Walmartians who wandered by. I got myself there by strength of shoulders and strength of will. I wandered around there and found a funny card for my dad and I tucked it in with the pile on me. I must have looked like a laundry hamper pushing itself through the store.
By now I was wondering what had happened to Joe. I hadn't heard any sirens so I knew that he hadn't had his jugular sliced. I thought I'd push back towards the cash registers so that he could easily find me. Finally he appeared coming down and aisle to my right. He said he'd been looking for fifteen minutes. He didn't think that I'd head that far away.
Apparently he asked three or four of the staff there if they'd seen a big guy in a wheelchair, they all said that they'd seen no one of my description. How could that be, it wasn't a huge store! I guess I'm just not as visible as I think I am.
Or he should have asked, 'Have you seen a stack of merchandise wheeling around the store.' I think that might have gotten a more positive response.
Good old invisible me. It always surprises me.
Friday, May 28, 2010
Lessons in a Coffee Shop
This is a story of contrasts. A tale of two men, both the same age, both solidly working class dudes, both drinking coffee with a group next to where Joe and I were having tea. The first happened last weekend, we were enjoying a hot tea on a cold day. The weather was gray but the horizon promised a better day coming. We were both in a relaxed mood. We had a long trip ahead of us but were, in the 'now', we were just a couple of carefree guys with a bit of time on our hands.
Next to us was a fellow having what looked like really strong coffee. He was sitting with a friend and they were chatting 'old people style' about health and operations and the death of mutual friends. The guy nearest me was talking about losing his eyesight. His tone grew serious and, after a piece, he confessed to his friend that he's terrified of the onset of disability, that if death came soon - he'd welcome it. His friend was stuck for words but then quietly said, 'I'd feel the same way too.' I thought this very sad as it looked as if these two men had faced down many a danger and overcome many an obstacle in their lifetime. Shouldn't this just be one more?
Then days later ...
We are in Summerside on a rainy afternoon. It didn't take long to make a tour of the mall there but in that time we did some serious damage to the bank account. To end the visit we stopped for a cup of tea and a sandwich at a popular coffee shop. There was a large table of elderly folks on one side of us and a couple of older guys on the other. One of those guys was telling his friend about the fact he was losing his sight. It felt very much like deja vu ... only this time the tone didn't darken.
The man's friend asked what it was like losing his sight. The man, early in entrance to the world of disability, said, 'Well, I thought it would be interesting to feel my wife's breasts, without sight and all ...' The other guy chuckled and said, 'And?' He continued, 'Trouble was I kept feeling all over her chest, apparently they moved when I wasn't looking.' Then they both howled. Hankerchiefs came out and they wiped eyes.
The man's friend said, 'Oh, boy, we're going to get whole new set of jokes from you.'
He said, 'You've always got to laugh.'
Two men. Two lives. Two attitudes.
Life truly, is a matter of perspective.
Next to us was a fellow having what looked like really strong coffee. He was sitting with a friend and they were chatting 'old people style' about health and operations and the death of mutual friends. The guy nearest me was talking about losing his eyesight. His tone grew serious and, after a piece, he confessed to his friend that he's terrified of the onset of disability, that if death came soon - he'd welcome it. His friend was stuck for words but then quietly said, 'I'd feel the same way too.' I thought this very sad as it looked as if these two men had faced down many a danger and overcome many an obstacle in their lifetime. Shouldn't this just be one more?
Then days later ...
We are in Summerside on a rainy afternoon. It didn't take long to make a tour of the mall there but in that time we did some serious damage to the bank account. To end the visit we stopped for a cup of tea and a sandwich at a popular coffee shop. There was a large table of elderly folks on one side of us and a couple of older guys on the other. One of those guys was telling his friend about the fact he was losing his sight. It felt very much like deja vu ... only this time the tone didn't darken.
The man's friend asked what it was like losing his sight. The man, early in entrance to the world of disability, said, 'Well, I thought it would be interesting to feel my wife's breasts, without sight and all ...' The other guy chuckled and said, 'And?' He continued, 'Trouble was I kept feeling all over her chest, apparently they moved when I wasn't looking.' Then they both howled. Hankerchiefs came out and they wiped eyes.
The man's friend said, 'Oh, boy, we're going to get whole new set of jokes from you.'
He said, 'You've always got to laugh.'
Two men. Two lives. Two attitudes.
Life truly, is a matter of perspective.
Thursday, May 27, 2010
The Mouse That Limped!!
I was talking to a blog reader on the phone the other day and she said, 'I noticed that your blog has been darker recently and wondered what was going on in your life.' I was a little astonished because I didn't think the blog had gone dark at all. 'Hmmmmmm,' I thought. Joe and I were chatting about this when we pulled into our hotel for the evening in Woodstock, New Brunswick.
As we parked in the disabled parking spaces and looked up at the blue man on the signs I noticed that something had been done to the faces on the two signs. I said to Joe, 'Look, no wonder my blog is dark, sometimes the world is mean, someone's defaced the disability signs.' I sank back in my chair convinced that the world just isn't a fair place to be some times.
Joe started to laugh and said, 'You should take a closer look at these signs.'
I sat up to look, curious why Joe was laughing his 'happy laugh' and saw more closely the signs. On the sign right in front of us someone, I'm guessing a kid, had put a sticker with Donald Duck's face over the face of the man. On the other one there was a sticker of Mickey Mouse complete with big ears. I grinned.
This isn't someone criminally defacing a disability symbol, this is someone having fun. We parked with Donald, I've always preferred him to Mickey, and I said to Joe, now that's pretty cool.
So, in Woodstock at least, Mick and Don are members of the crip camp!! I'm not sure what they'd make of that at Disney but I hope they'd grin. I hope they'd like the idea that the images of two of their characters appealed, for the first time in years, to a man near 60.
As we parked in the disabled parking spaces and looked up at the blue man on the signs I noticed that something had been done to the faces on the two signs. I said to Joe, 'Look, no wonder my blog is dark, sometimes the world is mean, someone's defaced the disability signs.' I sank back in my chair convinced that the world just isn't a fair place to be some times.
Joe started to laugh and said, 'You should take a closer look at these signs.'
I sat up to look, curious why Joe was laughing his 'happy laugh' and saw more closely the signs. On the sign right in front of us someone, I'm guessing a kid, had put a sticker with Donald Duck's face over the face of the man. On the other one there was a sticker of Mickey Mouse complete with big ears. I grinned.
This isn't someone criminally defacing a disability symbol, this is someone having fun. We parked with Donald, I've always preferred him to Mickey, and I said to Joe, now that's pretty cool.
So, in Woodstock at least, Mick and Don are members of the crip camp!! I'm not sure what they'd make of that at Disney but I hope they'd grin. I hope they'd like the idea that the images of two of their characters appealed, for the first time in years, to a man near 60.
Wednesday, May 26, 2010
What? What?
I have a new hero and one that's maybe four inches tall.
We pulled into get gas at a station just outside the Quebec border. We had just had the nasty experience with the Courtyard Marriott in Ottawa and I was in no mood to see beauty or hope or inspiration, which was, of course, exactly the kind of scene into which the unexpected wanders. It was Joe who saw it, 'Quick look!' I glanced over the way he was pointing and I saw ... nothing ... no one.
'I don't see anything,' I said in my patented listless voice - my victim voice.
'There, there, right beside you,' he said, his voice full of excitement.
Now I get up and really look.
Still, I see nothing, no one.
'Right there,' he said frustrated.
Still, I see nothing, no one.
'Oh. My. God. Right in front of your face, on the bumper of that truck beside us."
I look and I see.
Oh. My. God. Indeed.
There was this little brown starling on the bumper of the truck. It had one leg, one eye and a wing that had seen better days. It was standing and stretching tall and eating bugs off the front of the truck!! It got the one it was reaching for and then hopped to the side and went for another one. It was patient and determined and very good at spotting and picking delectable treats from the grill of the truck. I was stunned.
The driver got in the truck and slammed the door, the bird sensing the motion hopped down, a considerable drop but it's wings worked well enough to get it safely down, and moved over to the side. We could still see it and saw that it looked quite well fed, quite content.
My spirits lifted. Simply lifted. This little tiny bit of life had obviously fought back through some trauma, some deep injury to body, and was still hopping along, getting along. Amazing, simply amazing.
When I was a child I used to envy a bird's ability to fly. I got that wrong. I now envy this bird's ability to just get on with it.
God may know when a sparrow falls, I wonder, if then, he applauds when a starling doesn't.
We pulled into get gas at a station just outside the Quebec border. We had just had the nasty experience with the Courtyard Marriott in Ottawa and I was in no mood to see beauty or hope or inspiration, which was, of course, exactly the kind of scene into which the unexpected wanders. It was Joe who saw it, 'Quick look!' I glanced over the way he was pointing and I saw ... nothing ... no one.
'I don't see anything,' I said in my patented listless voice - my victim voice.
'There, there, right beside you,' he said, his voice full of excitement.
Now I get up and really look.
Still, I see nothing, no one.
'Right there,' he said frustrated.
Still, I see nothing, no one.
'Oh. My. God. Right in front of your face, on the bumper of that truck beside us."
I look and I see.
Oh. My. God. Indeed.
There was this little brown starling on the bumper of the truck. It had one leg, one eye and a wing that had seen better days. It was standing and stretching tall and eating bugs off the front of the truck!! It got the one it was reaching for and then hopped to the side and went for another one. It was patient and determined and very good at spotting and picking delectable treats from the grill of the truck. I was stunned.
The driver got in the truck and slammed the door, the bird sensing the motion hopped down, a considerable drop but it's wings worked well enough to get it safely down, and moved over to the side. We could still see it and saw that it looked quite well fed, quite content.
My spirits lifted. Simply lifted. This little tiny bit of life had obviously fought back through some trauma, some deep injury to body, and was still hopping along, getting along. Amazing, simply amazing.
When I was a child I used to envy a bird's ability to fly. I got that wrong. I now envy this bird's ability to just get on with it.
God may know when a sparrow falls, I wonder, if then, he applauds when a starling doesn't.
Tuesday, May 25, 2010
Pride Day Coming
Rolling Around in My Head is the proud host of the Disability Blog Carnival for the month of June. Here's how it works: each month a blogger hosts the carnival by working with the organizers in choosing a topic and picking a day. I asked for June because it is 'Pride Month' for the LGBT community and there will be Pride marches all over the world. I thought that the theme of 'Pride' was a good one.
Here's what I'd like. Send me a link to the blog you've written about disability that is the one that you are the most proud of ... not the one that got the most comments or most reactions - the one where you felt you best expressed something about the disability experience. For me the blogs most commented on surprise me. I'll write something I think has something important to say. Like the other day I wrote the line, 'Even the smallest baby with Down Syndrome is born with a backbone.' I thought this line powerfully said something important. It went entirely without notice.
Most writers will tell you that, 'that's how it is' when it comes to writing. People like what they like and read what they read, independently of what you like. So, this is the time to pull out that blog that you truly loved. The one you go back and read every now and again.
Send me the link and I'll put it up on Carnival day. I'd like all entries in by the 15th of June and Pride day will be the last Sunday of June.
Send the notice of this Carnival to other disability bloggers and get them to participate.
I'd love to have a day full of pride here at Rolling Around!
Monday, May 24, 2010
Even With Planning
A few weeks ago I was on a WheelTrans bus going to work and we picked up a woman who was chatty by nature. She explained that since she became disabled she had become organized. "You can't be lackadaisical and be disabled" she said with me realizing that I typically like people who use words like 'lackadaisical'. Apparently before disability she was late for everything, now, with the 'be on the bus or bus be gone' and 'be at appointment or appointment be gone' lifestyle she has learned to get up early, get ready before, and do what needs to be done when it needs to be done. 'I'm amazed at how much time there is in a day when you aren't rushing.'
For me, this is also true. Without organization, planning and foresight, life with a disability would not be survivable. Take travel. We know what we need and we take care to ensure that it happens. I book hotel rooms with disabled access. I call the hotel on the day of, several hours before arrival and double check the accessible room. This gives them time to fix something if it's been noted wrong. That way, everything is fine.
Until yesterday. We arrived at the Courtyard Marriott in Ottawa after booking an accessible room, calling to double check its availability. We arrive to be sent to a room that isn't accessible. (I think they thought we wouldn't notice.) We came back down and I was pissed. The room they sent us to was a very long way down carpeted hallways. I explained that I was upset and they explained that all the accessible rooms were taken. I had no room.
I stay here a lot when visiting family. This is 'my hotel'. I'm stunned. Eventually I get them to call hotels in Montreal to find an accessible hotel and we get in the car and drive two more hours to get to a hotel that doesn't have Internet in the room. Thereby this post isn't written and published until much later than usual.
Even meticulous planning can't trump 'I don't care service.' Even calling ahead can't trump, 'Oh, well, if you weren't crippled you could use another room' attitude. They did give me a certificate for a free stay in the future - ok, but that doesn't fix the problem.
The problem is that I had a system that worked. Planning, double checking ... it always meant that I arrived with no hassles. I can never trust that system again. I can't trust it because non-disabled people don't get what it is to have a disability, what it is to suddenly be left optionless, what it is to sit in a lobby of a hotel as people pretend to care and pretend to take action.
So, a late post and a frustrated writer.
Is there something else I can do to ensure that my travels are safe, for me. Is there something else I can do to assure myself that I'm not going to have to make a scene to get something which should be a right.
If you have answers, I have ears.
For me, this is also true. Without organization, planning and foresight, life with a disability would not be survivable. Take travel. We know what we need and we take care to ensure that it happens. I book hotel rooms with disabled access. I call the hotel on the day of, several hours before arrival and double check the accessible room. This gives them time to fix something if it's been noted wrong. That way, everything is fine.
Until yesterday. We arrived at the Courtyard Marriott in Ottawa after booking an accessible room, calling to double check its availability. We arrive to be sent to a room that isn't accessible. (I think they thought we wouldn't notice.) We came back down and I was pissed. The room they sent us to was a very long way down carpeted hallways. I explained that I was upset and they explained that all the accessible rooms were taken. I had no room.
I stay here a lot when visiting family. This is 'my hotel'. I'm stunned. Eventually I get them to call hotels in Montreal to find an accessible hotel and we get in the car and drive two more hours to get to a hotel that doesn't have Internet in the room. Thereby this post isn't written and published until much later than usual.
Even meticulous planning can't trump 'I don't care service.' Even calling ahead can't trump, 'Oh, well, if you weren't crippled you could use another room' attitude. They did give me a certificate for a free stay in the future - ok, but that doesn't fix the problem.
The problem is that I had a system that worked. Planning, double checking ... it always meant that I arrived with no hassles. I can never trust that system again. I can't trust it because non-disabled people don't get what it is to have a disability, what it is to suddenly be left optionless, what it is to sit in a lobby of a hotel as people pretend to care and pretend to take action.
So, a late post and a frustrated writer.
Is there something else I can do to ensure that my travels are safe, for me. Is there something else I can do to assure myself that I'm not going to have to make a scene to get something which should be a right.
If you have answers, I have ears.
Sunday, May 23, 2010
What Did and What Didn't Happen
It started out such a nice day. I guess that should have been the warning. We are up in Gravenhurst for a restful weekend before beginning a trip that will take us to PEI and New Brunswick. A leisurely breakfast was followed by laying down for a good read. We were heading out and I entered the hallway. Joe had forgotten something in the room so went back in and I waited patiently in my chair.
One of our neighbours came along, glanced at me, then used the key to open the room door. But instead of going in he called to people indoors and they came out. He pointed at me and they all began laughing and talking in a language that I don't understand. I do understand being stared at. Being laughed at. It's happened all my life. For the most part I simply try to rise above. But the wind wasn't blowing that way.
I lost my cool.
I lost my temper.
I let loose with my tongue.
I've learned to never swear when you are angry, I have the capacity and the vocabulary to express outrage and I did. An untapped well of anger rose in me. I grabbed hold of the wheels and began to roll towards them all the while speaking loudly and firmly. Telling them that they were rude, ignorant people who deserved no respect from me. That if they hadn't learned basic manners then I was going to teach them. I heard Joe come out of the room behind me but I didn't care, I kept on rolling.
They froze. Like all bullies, they expected me to be passive and simply let them make fun of me. As I kept pushing, I suddenly felt Joe's hands on the back of my chair and he was coming with me.
They glanced at each other and fled into the room. I got to the door and banged on it. Joe was now telling me to let it go. I banged a couple more times. I'm not absolutely sure but I think I smelled the faint fragrance of cowards shitting themselves on the other side of the door.
That's what happened.
You know what didn't happen.
I didn't let it ruin my day. I got in the car, said, 'That's done with.'
And I had a nice day.
One of our neighbours came along, glanced at me, then used the key to open the room door. But instead of going in he called to people indoors and they came out. He pointed at me and they all began laughing and talking in a language that I don't understand. I do understand being stared at. Being laughed at. It's happened all my life. For the most part I simply try to rise above. But the wind wasn't blowing that way.
I lost my cool.
I lost my temper.
I let loose with my tongue.
I've learned to never swear when you are angry, I have the capacity and the vocabulary to express outrage and I did. An untapped well of anger rose in me. I grabbed hold of the wheels and began to roll towards them all the while speaking loudly and firmly. Telling them that they were rude, ignorant people who deserved no respect from me. That if they hadn't learned basic manners then I was going to teach them. I heard Joe come out of the room behind me but I didn't care, I kept on rolling.
They froze. Like all bullies, they expected me to be passive and simply let them make fun of me. As I kept pushing, I suddenly felt Joe's hands on the back of my chair and he was coming with me.
They glanced at each other and fled into the room. I got to the door and banged on it. Joe was now telling me to let it go. I banged a couple more times. I'm not absolutely sure but I think I smelled the faint fragrance of cowards shitting themselves on the other side of the door.
That's what happened.
You know what didn't happen.
I didn't let it ruin my day. I got in the car, said, 'That's done with.'
And I had a nice day.
Saturday, May 22, 2010
Odd. How Odd
OK.
This is odd.
First let me remind you of two things:
I am very, very fat.
I ride in a fairly distinctive wheelchair.
OK.
Got that.
So, I was in the bookstore looking to pick up a book to take on our next lecture tour, when I stopped in my tracks. A woman calling, 'Francis, Francis, over here dear. Oh, my, Francis!' as she rushed along. I have become an expert, as all wheelchair users are, at judging the trajectory of the fleet of foot. I could tell she was going to run right into me. I wanted to be parked when this happened. I looked around for someone who looked like a Francis and saw no one. I did notice others staring at her because bookstores tend to be quiet and her raucous behaviour was clearly deemed unseemly in the eyes of others.
Finally I realize that she is calling to me, 'Francis!' Me? Francis? Not likely, I figure that I am a Dave. Look like a Dave. Feel like a Dave. Drive like a Dave. But she is addressing me as Francis. I don't have people ever, ever, ever, mistake me for someone else. I kind of figure I'm a 'one of a kind' sort of person. She reaches to hug me and I quickly, not being into hugs from strangers, said, 'Mam, you've confused me with someone else.' I glance at her eyes, does she have cataracts, does she have a 'otherworldly look' in her eye, and she seems entirely, utterly normal.
She is brought up by my protestation of non Francis status. 'Really, you look just like Francis,' she said.
I thought:
I do?
Really?
There's another one?
I have a doppelganger?
I said: I find that hard to believe.
'Really, you do, I can't believe the similarity.' She begins to apologize and move away. I'm stricken with curiosity and want to ask what he does ... but this is so 'science fiction' that I'm afraid she might say, 'He writes a blog on disability.' And that then, I would disappear.
This is odd.
First let me remind you of two things:
I am very, very fat.
I ride in a fairly distinctive wheelchair.
OK.
Got that.
So, I was in the bookstore looking to pick up a book to take on our next lecture tour, when I stopped in my tracks. A woman calling, 'Francis, Francis, over here dear. Oh, my, Francis!' as she rushed along. I have become an expert, as all wheelchair users are, at judging the trajectory of the fleet of foot. I could tell she was going to run right into me. I wanted to be parked when this happened. I looked around for someone who looked like a Francis and saw no one. I did notice others staring at her because bookstores tend to be quiet and her raucous behaviour was clearly deemed unseemly in the eyes of others.
Finally I realize that she is calling to me, 'Francis!' Me? Francis? Not likely, I figure that I am a Dave. Look like a Dave. Feel like a Dave. Drive like a Dave. But she is addressing me as Francis. I don't have people ever, ever, ever, mistake me for someone else. I kind of figure I'm a 'one of a kind' sort of person. She reaches to hug me and I quickly, not being into hugs from strangers, said, 'Mam, you've confused me with someone else.' I glance at her eyes, does she have cataracts, does she have a 'otherworldly look' in her eye, and she seems entirely, utterly normal.
She is brought up by my protestation of non Francis status. 'Really, you look just like Francis,' she said.
I thought:
I do?
Really?
There's another one?
I have a doppelganger?
I said: I find that hard to believe.
'Really, you do, I can't believe the similarity.' She begins to apologize and move away. I'm stricken with curiosity and want to ask what he does ... but this is so 'science fiction' that I'm afraid she might say, 'He writes a blog on disability.' And that then, I would disappear.
Friday, May 21, 2010
Real Life, Real Lessons
Several of you sharp eyed readers sent me a link to the story about the television programme What Would You Do. It's a reality style programme wherein situations are set up and scripted, actors play their parts pretending to be everyday citizens and the cameras catch the reaction of people in the area. It's kind of like a sociological version of the old show Candid Camera. The episode that people wrote to me about was set in a grocery store that had employed a bagger with Down Syndrome (played by an actor with Down Syndrome) who is berated and verbally abused by a customer who calls him names, makes derogatory comments about who he is and how he does his work.
They make a point about how most people simply didn't do anything, though when interviewed later they all recognized the inappropriateness of the verbal language used in reference to the bagger with Down Syndrome. After several customers did nothing a customer named Linda Tapia took on the abuser and spoke her mind. They celebrate, as do I but less loudly, the courage of Ms Tapia in speaking up. I do not disagree, I applaud the fact that she had the moral backbone to speak up and let her voice be heard, her defense of the bagger was powerful and eloquent.
So the show demonstrates that people with disabilities really can't rely on the kindness of strangers. It wants to encourage people to speak up in similar circumstances. I can't argue with that either.
But I think there is much more to learn about society and about our joint responsibilities as parents and care providers than they seem to understand. In fact, I think the show is built on a faulty premise. They seem to think that a motivated public can rise in protection of those needing protection. I'd like to believe that's true. Not for disabled people alone, but for anyone being victimized or abused. It would be nice if the voice of the majority of good people would rise in complaint when a woman is treated dismissively by a patriarchal boss, a child is victimized by hateful words from an angry mother ... the list here is long.
But that's not going to happen.
So what do we need to learn from this?
Since the 'kindness of strangers' is no strategy for a sane person to approach dangerous situations, situations of abuse, situations of prejudice and intolerance. Then we need to think of doing something radical. We have to ensure that people like that bagger, know what to do in the face of bullying. We have to ensure that people with disabilities UNERSTAND the nature of prejudice and UNDERSTAND that they are not at fault for their treatment at the hands of bigots. There needs to be a joint 'aha' wherein we begin to do real training regarding living in the real community.
The community is comprised of wonderful people, but we know that wonderful people can be silent. So we need training so that baggers know how to say, 'You are being disrespectful, stop it.' If the woman goes ballistic, then the bagger needs to know who to report it to and how to make the situation clear.
Even the smallest baby with Down Syndrome is born with a backbone. As we teach and parent that child, we should also be giving them opportuntity to use that backbone to stand straight, to stand tall, to look bigots in the face and call them on it.
It's wonderful that Linda Tapia was there.
But it would be terrific if, in the real world, people with disabilities didn't need her quite so very much.
They make a point about how most people simply didn't do anything, though when interviewed later they all recognized the inappropriateness of the verbal language used in reference to the bagger with Down Syndrome. After several customers did nothing a customer named Linda Tapia took on the abuser and spoke her mind. They celebrate, as do I but less loudly, the courage of Ms Tapia in speaking up. I do not disagree, I applaud the fact that she had the moral backbone to speak up and let her voice be heard, her defense of the bagger was powerful and eloquent.
So the show demonstrates that people with disabilities really can't rely on the kindness of strangers. It wants to encourage people to speak up in similar circumstances. I can't argue with that either.
But I think there is much more to learn about society and about our joint responsibilities as parents and care providers than they seem to understand. In fact, I think the show is built on a faulty premise. They seem to think that a motivated public can rise in protection of those needing protection. I'd like to believe that's true. Not for disabled people alone, but for anyone being victimized or abused. It would be nice if the voice of the majority of good people would rise in complaint when a woman is treated dismissively by a patriarchal boss, a child is victimized by hateful words from an angry mother ... the list here is long.
But that's not going to happen.
So what do we need to learn from this?
Since the 'kindness of strangers' is no strategy for a sane person to approach dangerous situations, situations of abuse, situations of prejudice and intolerance. Then we need to think of doing something radical. We have to ensure that people like that bagger, know what to do in the face of bullying. We have to ensure that people with disabilities UNERSTAND the nature of prejudice and UNDERSTAND that they are not at fault for their treatment at the hands of bigots. There needs to be a joint 'aha' wherein we begin to do real training regarding living in the real community.
The community is comprised of wonderful people, but we know that wonderful people can be silent. So we need training so that baggers know how to say, 'You are being disrespectful, stop it.' If the woman goes ballistic, then the bagger needs to know who to report it to and how to make the situation clear.
Even the smallest baby with Down Syndrome is born with a backbone. As we teach and parent that child, we should also be giving them opportuntity to use that backbone to stand straight, to stand tall, to look bigots in the face and call them on it.
It's wonderful that Linda Tapia was there.
But it would be terrific if, in the real world, people with disabilities didn't need her quite so very much.
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