Beautifully dressed, well groomed, vacant smile. She sat, where directed by staff, looking straight ahead, completely unengaged with the world. I spoke to her and she looked at me, listlessly, without responding. "OK," I thought, "this woman has a fairly significant disability." Others arrived and were chatting and arranging themselves in the room. It was another day of workshops for people with disabilities, this one on abuse prevention.
We began. The workshop, though on a serious topic, is designed to be a lot of fun and filled with laughter. People aren't afraid of learning if they are having fun. Suddenly I notice her laughing, right on time, right on cue. "Hey," I think, "there is someone in there." I watch her. Her Down Syndrome, so noticible only moments ago, is receding and her personality is ascending. Now she covers her face with her hands and laughs heartily.
I ask her to come up for a role play. She's up in a flash. The role play involes her demonstrating how close it is for a stranger to come ... it's all about boundaries. She learns to assert herself strongly and loudly. She loves the attention and she's loving learning. At break chat with her and she tells me about her family and her interests - the list is long. She loves her family and is well loved by them. She even makes jokes about her MU ... ther.
Later, after lunch, I see her sitting in the lobby of the hotel the event is being held in. Her Down Syndrome mask is back on. Hotel guests walk by, stare, then look away pity (or fear or revulsion) in their eyes. No one, that's NO ONE responds to her neutrally. Everyone sees her disability, everyone sees the result of the extra gene, everyone has a reaction.
But she is immune to them. Hiding behind the mask is a vibrant woman in disguise. They'll never know, never realize.
Now, there's the pity.
Sunday, December 02, 2007
Saturday, December 01, 2007
PRIDE
At first.
At first I thought he was staff. He had a confident swagger, a cheeky grin and a sense of style that was just the right amount of edgy. A bit cooler than most of us who work in the caring profession, but I get used to the young. It was only after I begun when I realized that he was sitting with some friends, others with disabilities, that he too had an intellectual disability. I'm not sure he'd like that term, here in England they use the term Learning Difficulty.
I had been nervous about the day as I was trying something new. I wanted fresh input into what I was doing so I did an old workshop with a twist. I stopped after each of my planned role plays and had the 50 or 60 people with disabilities and their carers break into groups, come up with their own example and then come up and be filmed doing their little play. I am desperately nervous with new things and had worried, needlessly, about the day. It was a great group and they got into writing role plays, performing them and watching themselves on screen.
He'd been up three times in three different roles plays. He impressed me for a variety of reasons. Primarily, as a guy who needed minimal supports he showed no disinclination with being part of a group wherein some had much more severe needs. Often, those with lesser disabilities want to distance themselves from the 'others' and identify instead with carers. He showed no such need. No such shame of membership. His cool was deeper than his clothes.
During his last role play he came by me and I stopped him and made a joke to the audience. I said, "You know you've played a guy who has a messy, stinky room, a guy who hates Celine Dion and a guy who reads other people's mail ... you must be hell to live with ..." He laughed and said, "Yeah, and I'm a tart too!" The room erupted in laughter.
When it was over and he and I were talking a bit, I had wanted to thank him for his involvement in the day. I noticed that he was wearing a small red ribbon attached to his sweater. I asked him about it. He said that he was wearing it to mark World AIDS Day. He told me that he was a member of a group for people who were HIV positive. Then he talked a bit about his health and difficulties he was having. We spoke about the gay community and it's intolerance and sometimes hostility towards people with disabilities. We spoke about the need tor all, that's ALL, to be educated about how to be safe.
In the end he agreed to work with me to write something for the gay press, maybe the disability press as well about what it is to be gay, to be HIV positive and to be a service recipient. He smiled a bit shyly, I thought, at the idea. Then he said, "I'm up for it."
I remember many years ago when a man with an intellectual disability died of AIDS in Ontario. There was such a cloak of slience about what had happened. A sense of shock and shame. No one would even say his name aloud. This silence has caused damage ... maybe if we'd noticed then that there were real world dangers, that there were real world consequences, we'd have done something. Maybe, at a time when this young man was a boy, if we had taken stock and stepped up to the plate, there would have been training in place. Maybe, maybe, this is our fault.
"They want to sweep it under the carpet," he is saying to me. And I agree.
Today, on World AIDS Day, there is a man with an intellectual disability in Bournemouth handing out leaflets about AIDS awareness, about self protection. You'll notice him, if not by his cool, at least by his deep, deep pride.
At first I thought he was staff. He had a confident swagger, a cheeky grin and a sense of style that was just the right amount of edgy. A bit cooler than most of us who work in the caring profession, but I get used to the young. It was only after I begun when I realized that he was sitting with some friends, others with disabilities, that he too had an intellectual disability. I'm not sure he'd like that term, here in England they use the term Learning Difficulty.
I had been nervous about the day as I was trying something new. I wanted fresh input into what I was doing so I did an old workshop with a twist. I stopped after each of my planned role plays and had the 50 or 60 people with disabilities and their carers break into groups, come up with their own example and then come up and be filmed doing their little play. I am desperately nervous with new things and had worried, needlessly, about the day. It was a great group and they got into writing role plays, performing them and watching themselves on screen.
He'd been up three times in three different roles plays. He impressed me for a variety of reasons. Primarily, as a guy who needed minimal supports he showed no disinclination with being part of a group wherein some had much more severe needs. Often, those with lesser disabilities want to distance themselves from the 'others' and identify instead with carers. He showed no such need. No such shame of membership. His cool was deeper than his clothes.
During his last role play he came by me and I stopped him and made a joke to the audience. I said, "You know you've played a guy who has a messy, stinky room, a guy who hates Celine Dion and a guy who reads other people's mail ... you must be hell to live with ..." He laughed and said, "Yeah, and I'm a tart too!" The room erupted in laughter.
When it was over and he and I were talking a bit, I had wanted to thank him for his involvement in the day. I noticed that he was wearing a small red ribbon attached to his sweater. I asked him about it. He said that he was wearing it to mark World AIDS Day. He told me that he was a member of a group for people who were HIV positive. Then he talked a bit about his health and difficulties he was having. We spoke about the gay community and it's intolerance and sometimes hostility towards people with disabilities. We spoke about the need tor all, that's ALL, to be educated about how to be safe.
In the end he agreed to work with me to write something for the gay press, maybe the disability press as well about what it is to be gay, to be HIV positive and to be a service recipient. He smiled a bit shyly, I thought, at the idea. Then he said, "I'm up for it."
I remember many years ago when a man with an intellectual disability died of AIDS in Ontario. There was such a cloak of slience about what had happened. A sense of shock and shame. No one would even say his name aloud. This silence has caused damage ... maybe if we'd noticed then that there were real world dangers, that there were real world consequences, we'd have done something. Maybe, at a time when this young man was a boy, if we had taken stock and stepped up to the plate, there would have been training in place. Maybe, maybe, this is our fault.
"They want to sweep it under the carpet," he is saying to me. And I agree.
Today, on World AIDS Day, there is a man with an intellectual disability in Bournemouth handing out leaflets about AIDS awareness, about self protection. You'll notice him, if not by his cool, at least by his deep, deep pride.
Friday, November 30, 2007
One
She came in, walking carefully, even more carefully led. Her body allowed her to walk, slowly, carefully and with assistance. A chair was found, she didnt bend well, but she managed to get comfortable. She looked up at me. Despair filled her eyes. She was used to being underestimated, used to being unincluded, used to having life happen around her. Strangers always saw her disability - and it was front and center to see. Carers, others who knew her, knew different. But she saw me, looking at her, and guessed that I saw what everyone else did. Her face went slack.
The day begun with a rousing chant and we were off. Throughout the day, various people came up to do role plays, to read facts, to demonstrate their skill. All were roundly applauded by the group. Then came a role play that I knew, I just knew, had caught her interest. I pointed to her and asked if she wanted to come up. She had little intellegible speach, but she could indicate assent and then suddenly remembered that she needed help. Someone else with a disability noted that there were no 'carers' in the room - so she wouldn't be able to go up.
I said, "No one cares here?"
"I do," a faint voice from a shy woman who got up and gently took hands in her and gently guided a willing woman up to the front and onto a chair. She sat looking at the audience. She realized that she was at the front. Tears filled her eyes. A shout of excitement left her. Then it was the role play.
She did brilliantly.
I think she surprised herself.
She certainly surprised the group who didn't just applaud her success, they cheered it. Tears flowed down her cheeks. Her assistant with a disability came and helped her to slowly walk back to her seat. She stopped, half way, and turned to me. She said the only clear word that day.
"Thank you."
I almost started to cry. Tears filled my eyes. I was grateful that I had to wait a few more seconds for her to return to her seat. She sat down a changed woman. She cheered for others, paid attention to every little joke I made and laughed riotously.
Inclusion.
Begins at home.
The day begun with a rousing chant and we were off. Throughout the day, various people came up to do role plays, to read facts, to demonstrate their skill. All were roundly applauded by the group. Then came a role play that I knew, I just knew, had caught her interest. I pointed to her and asked if she wanted to come up. She had little intellegible speach, but she could indicate assent and then suddenly remembered that she needed help. Someone else with a disability noted that there were no 'carers' in the room - so she wouldn't be able to go up.
I said, "No one cares here?"
"I do," a faint voice from a shy woman who got up and gently took hands in her and gently guided a willing woman up to the front and onto a chair. She sat looking at the audience. She realized that she was at the front. Tears filled her eyes. A shout of excitement left her. Then it was the role play.
She did brilliantly.
I think she surprised herself.
She certainly surprised the group who didn't just applaud her success, they cheered it. Tears flowed down her cheeks. Her assistant with a disability came and helped her to slowly walk back to her seat. She stopped, half way, and turned to me. She said the only clear word that day.
"Thank you."
I almost started to cry. Tears filled my eyes. I was grateful that I had to wait a few more seconds for her to return to her seat. She sat down a changed woman. She cheered for others, paid attention to every little joke I made and laughed riotously.
Inclusion.
Begins at home.
Thursday, November 29, 2007
Today
Today is the day.
I've been waiting for it. If you are a regular reader, you will remember that a while back I got another infection for which I was on IV antibiotics and then switched to massive oral dosages. When I get an infection, I get an infection. Then I developed, for the first time in my life, an alergy to an antibiotic and I lost all the skin of my palms, the soles of my feet, my lips, and ... um ... one other place. So the doctor did an immediate consultation and switched my antibiotics (and called me daily to see how I was).
The infection was slow to heal, as it always has been, but it's been healing. I first noticed this because the pain was lessening and I didn't need the pain medication any more. Oddly, I had a friend or two offer to buy the pills from me - apparently they have street value. I sometimes hang with a bad lot. For any law enforcement people reading, I didn't sell them - still have them.
Next on the healing journey was my return two days ago to wearing regular pants. I know I'm hugely fat now, but I was even more hugely fat a few years ago and I had two pair of pants from those days that I've never thrown out because they are so damn comfortable. Thank heavens I had them because the wide, wide leg was perfect for me as it put no pressure on the infection site.
Finally, today, I'm stopping the medication as the infection is all but gone. It will be a relief to be off them - mostly for psychological reasons. For the last few days I've been forgetting about the infection but am reminded several times a day as I pop an antibiotic. Now I can begin relegating this to the past and move forward.
It had been two years since I had an infection and I was so upset to get another one. But the medical professionals figured out why it came back and adjusted things so they think another is unlikely. Rah.
So today I celebrate a return of health.
I celebrate the fact that I live in a country with free health care.
I celebrate the fact that I have a doctor who calls me to check in on me.
I celebrate the fact that I have a life that I love and people that care about me.
It's going to be a good day.
I know it.
I've been waiting for it. If you are a regular reader, you will remember that a while back I got another infection for which I was on IV antibiotics and then switched to massive oral dosages. When I get an infection, I get an infection. Then I developed, for the first time in my life, an alergy to an antibiotic and I lost all the skin of my palms, the soles of my feet, my lips, and ... um ... one other place. So the doctor did an immediate consultation and switched my antibiotics (and called me daily to see how I was).
The infection was slow to heal, as it always has been, but it's been healing. I first noticed this because the pain was lessening and I didn't need the pain medication any more. Oddly, I had a friend or two offer to buy the pills from me - apparently they have street value. I sometimes hang with a bad lot. For any law enforcement people reading, I didn't sell them - still have them.
Next on the healing journey was my return two days ago to wearing regular pants. I know I'm hugely fat now, but I was even more hugely fat a few years ago and I had two pair of pants from those days that I've never thrown out because they are so damn comfortable. Thank heavens I had them because the wide, wide leg was perfect for me as it put no pressure on the infection site.
Finally, today, I'm stopping the medication as the infection is all but gone. It will be a relief to be off them - mostly for psychological reasons. For the last few days I've been forgetting about the infection but am reminded several times a day as I pop an antibiotic. Now I can begin relegating this to the past and move forward.
It had been two years since I had an infection and I was so upset to get another one. But the medical professionals figured out why it came back and adjusted things so they think another is unlikely. Rah.
So today I celebrate a return of health.
I celebrate the fact that I live in a country with free health care.
I celebrate the fact that I have a doctor who calls me to check in on me.
I celebrate the fact that I have a life that I love and people that care about me.
It's going to be a good day.
I know it.
Wednesday, November 28, 2007
Shower
I fell this morning.
I fear falling as, since I became disabled, getting back up is a difficult task. But I managed, with no grace or dignity but I managed. I had been trying to get into the shower. I don't know why but hotel's here in England have tubs that involve an incredible step up into them. I lifted my leg way up over the side of the tub and then grabbed the grab bar to pull myself up and then slipped and smacked my other leg against the tub and down I went.
I'm hurting.
This is an accessible room. They have all been accessible room and they've all had tubs that you have to be spry to get into. I'm wondering why they make a bathroom with an adapted toilet and then have a tub that's such a hurtle. I've made all the other tubs so far on the trip but this one sent me crashing to the floor.
I'm a person who makes friends with fear way too quickly. I know from now on I'm going to be anxious every single morning getting into the tub, every single time I want to have a shower. This morning I got damp cloths and washed up but that never leaves me feeling as clean as I want to ... but there was no way I was trying to get into that tub again.
Yesterday at my lecture in Northampton a man with Down Syndrome came up to me at lunch and asked if the could make an announcement before I started in the afternoon. I told him that I'd ensure he had the opportunity. He then told me with pride that he was a member of a People First group and that he had important news about the group.
I called him up to the front and he came walking with great purpose and greater dignity. He put me to shame in that he wore a nice fitting suit and I was there in my jeans. I gave him the mike and he started to talk. Suddenly he became really nervous and fumbled with what he was going to say, he looked quickly at me and asked 'What was I going to say again' and I just started to answer and he said, 'Oh, yeah' remembering.
Just before he started again he whispered to himself, "You can do it."
And he did.
With all the world throws at us, we as disabled people have to keep giving ourselves that message. I'm going to follow his lead. Tomorrow, I'm going to conquer that shower. Because even though it's difficult, it isn't designed for me ... I can do it.
I hope.
I fear falling as, since I became disabled, getting back up is a difficult task. But I managed, with no grace or dignity but I managed. I had been trying to get into the shower. I don't know why but hotel's here in England have tubs that involve an incredible step up into them. I lifted my leg way up over the side of the tub and then grabbed the grab bar to pull myself up and then slipped and smacked my other leg against the tub and down I went.
I'm hurting.
This is an accessible room. They have all been accessible room and they've all had tubs that you have to be spry to get into. I'm wondering why they make a bathroom with an adapted toilet and then have a tub that's such a hurtle. I've made all the other tubs so far on the trip but this one sent me crashing to the floor.
I'm a person who makes friends with fear way too quickly. I know from now on I'm going to be anxious every single morning getting into the tub, every single time I want to have a shower. This morning I got damp cloths and washed up but that never leaves me feeling as clean as I want to ... but there was no way I was trying to get into that tub again.
Yesterday at my lecture in Northampton a man with Down Syndrome came up to me at lunch and asked if the could make an announcement before I started in the afternoon. I told him that I'd ensure he had the opportunity. He then told me with pride that he was a member of a People First group and that he had important news about the group.
I called him up to the front and he came walking with great purpose and greater dignity. He put me to shame in that he wore a nice fitting suit and I was there in my jeans. I gave him the mike and he started to talk. Suddenly he became really nervous and fumbled with what he was going to say, he looked quickly at me and asked 'What was I going to say again' and I just started to answer and he said, 'Oh, yeah' remembering.
Just before he started again he whispered to himself, "You can do it."
And he did.
With all the world throws at us, we as disabled people have to keep giving ourselves that message. I'm going to follow his lead. Tomorrow, I'm going to conquer that shower. Because even though it's difficult, it isn't designed for me ... I can do it.
I hope.
Tuesday, November 27, 2007
Assault
We had our keys in had and were headed up to the hotel room. Both tired from the day and the drive we were glad of arrival. Mercifully the room was right by the elevator, a fact which suprised us because we've stayed there before and always had to be way down the end of a carpetted hallway. This was better. Way better.
Joe plunged the key through the reader and slammed the door open only to find it barred by one of those flimsy chains that hotel's give you to keep out intruders. A small cry from within the room indicated that we'd startled someone. A woman came to the door and we explained that we must have been given keys to the wrong room. Her harsh face relaxed to a smile and she wished us well in finding our room.
Back downstairs, coming out of the elevator we saw the clerk running towards us with new keys in his hands and apology in his mouth. He was clearly upset by his mistake and promised to also call the woman to apologize to her. Back upstairs now and, yep, down the long carpetted hallway.
The following morning we were having breakfast and the woman we'd disturbed came in. She stopped at the table and asked if everything was OK with the new room. I apologized again for us barging in saying it must have frightened her. She laughed and said that as soon as she saw me she knew she was safe, then - without thinking about what she was saying - "It's not like it was a real man barging in."
Oh.
I swallowed my pride and the words forming in an angry mind were held back. It ended a with more niceties.
Now, I truly am glad that she wasn't frightened. I know how vulnerable a woman can be travelling on her own, I wouldn't have wanted to add fear or terror into her life.
But.
I'm a man.
Now.
I'm not a rapist, a murderer, a mugger. She could have said, 'I could see you didn't have murder in your eyes," and I'd be OK
But.
I'm a man.
A good one I hope.
But a man.
A real one.
There was no fear of assault from me, who knew that there was fear of assault by her?
Joe plunged the key through the reader and slammed the door open only to find it barred by one of those flimsy chains that hotel's give you to keep out intruders. A small cry from within the room indicated that we'd startled someone. A woman came to the door and we explained that we must have been given keys to the wrong room. Her harsh face relaxed to a smile and she wished us well in finding our room.
Back downstairs, coming out of the elevator we saw the clerk running towards us with new keys in his hands and apology in his mouth. He was clearly upset by his mistake and promised to also call the woman to apologize to her. Back upstairs now and, yep, down the long carpetted hallway.
The following morning we were having breakfast and the woman we'd disturbed came in. She stopped at the table and asked if everything was OK with the new room. I apologized again for us barging in saying it must have frightened her. She laughed and said that as soon as she saw me she knew she was safe, then - without thinking about what she was saying - "It's not like it was a real man barging in."
Oh.
I swallowed my pride and the words forming in an angry mind were held back. It ended a with more niceties.
Now, I truly am glad that she wasn't frightened. I know how vulnerable a woman can be travelling on her own, I wouldn't have wanted to add fear or terror into her life.
But.
I'm a man.
Now.
I'm not a rapist, a murderer, a mugger. She could have said, 'I could see you didn't have murder in your eyes," and I'd be OK
But.
I'm a man.
A good one I hope.
But a man.
A real one.
There was no fear of assault from me, who knew that there was fear of assault by her?
Monday, November 26, 2007
Rufus
Happy accident.
We noticed a sign on the M602 in Manchester for an exhibit called, 'The Animals' War'. The idea intrigued me so I googled it and found that it was an exhibition held at the Imperial War Museum ... a building of amazing creativity. We decided to stop in and visit the display on our way to Birmingham.
This morning our decision wavered as we got into a car packed to the gunnels with luggage and boxes of books. But, we reasoned, the exhibit is something we'd both enjoy and probably regret missing. As we drove there we both realized that we knew precious little about the role that animals played in humankind's conflicts. Of course, we knew of the horses in the cavalry ... and sniffer dogs, but that was about it.
There was a ton of disabled parking because we were there early and we wound our way in and picked up a programme. We immediately got lost, wonderfully lost. Instead of turning into the special exhibit of Animals in Wartime, we turned into the main hall. Both of us love the history of WWII, but Joe is a real history buff. He was in heaven as he walked slowly from spot to spot, reading placards and looking at objects. The floor was perfect for rolling so I was able to get around on my own and leave him to his exploration. After about an hour we decided that we'd better get on to the show we'd come to see.
Tears filled my eyes right off when entering the exhibit and reading about a dog named Buster. His photo was blown up to giant size and without even reading his story, you knew this was one amazing dog. We wandered through the show and encountered story after story of horses, elephants, pigeons, cats and dogs who played a role in each conflict. I stopped at one point and was sure that I heard the pad of a dogs foot, nails hitting the floor. I turned and saw a frail looking woman driving a wheelchair with a faithful old assistance dog beside her. Glancing from her to the dog and back I thought that this was the perfect place for them to be, and the perfect place for me to see them.
We exchanged a few pleasantries when we ended up beside the same display and I found out that the dog's name was Rufus. Close up, I realized that the woman I was speaking to was much younger that I'd first assumed. She had the trembling hands of an elderly woman but the voice of a vibrant young thing. Rufus sat and watched us chat, casually checking me out ... deciding I'm sure that I should have a dog beside me too.
On our way out I stopped at the statue of Winnie ... the bear that became part of literary history when a soldier from Canada brought him to England to be the mascot for his company ... and ended up becoming 'Winnie the Poo'. The card beside Winnie said that it was OK to give the statue a stroke underneat the chin. There was a band of childring in front of me all reaching up to touch the bear's throat. I waited to do the same and found myself beside Rufus who glanced at me as if to ask if they could go first.
"Go ahead," I said, "I'm waiting for Joe."
They moved ahead of me in line and she reached out to touch the bear but her arm just wasn't strong enough. Rufus watched her, realized what she was doing and stood. He placed his front paw on the footrest and then raised to full height so that his nose lifted her elbow ... she touched the bear exactly where she wanted to. Rufus then climbed down and they left.
On our way out we saw them again. Her hand was down resting on Rufus' neck, her fingers playing with his fur. I waved goodbye as did she.
I swear Rufus smiled at me when I called out to him, "I think I need a dog too."
We noticed a sign on the M602 in Manchester for an exhibit called, 'The Animals' War'. The idea intrigued me so I googled it and found that it was an exhibition held at the Imperial War Museum ... a building of amazing creativity. We decided to stop in and visit the display on our way to Birmingham.
This morning our decision wavered as we got into a car packed to the gunnels with luggage and boxes of books. But, we reasoned, the exhibit is something we'd both enjoy and probably regret missing. As we drove there we both realized that we knew precious little about the role that animals played in humankind's conflicts. Of course, we knew of the horses in the cavalry ... and sniffer dogs, but that was about it.
There was a ton of disabled parking because we were there early and we wound our way in and picked up a programme. We immediately got lost, wonderfully lost. Instead of turning into the special exhibit of Animals in Wartime, we turned into the main hall. Both of us love the history of WWII, but Joe is a real history buff. He was in heaven as he walked slowly from spot to spot, reading placards and looking at objects. The floor was perfect for rolling so I was able to get around on my own and leave him to his exploration. After about an hour we decided that we'd better get on to the show we'd come to see.
Tears filled my eyes right off when entering the exhibit and reading about a dog named Buster. His photo was blown up to giant size and without even reading his story, you knew this was one amazing dog. We wandered through the show and encountered story after story of horses, elephants, pigeons, cats and dogs who played a role in each conflict. I stopped at one point and was sure that I heard the pad of a dogs foot, nails hitting the floor. I turned and saw a frail looking woman driving a wheelchair with a faithful old assistance dog beside her. Glancing from her to the dog and back I thought that this was the perfect place for them to be, and the perfect place for me to see them.
We exchanged a few pleasantries when we ended up beside the same display and I found out that the dog's name was Rufus. Close up, I realized that the woman I was speaking to was much younger that I'd first assumed. She had the trembling hands of an elderly woman but the voice of a vibrant young thing. Rufus sat and watched us chat, casually checking me out ... deciding I'm sure that I should have a dog beside me too.
On our way out I stopped at the statue of Winnie ... the bear that became part of literary history when a soldier from Canada brought him to England to be the mascot for his company ... and ended up becoming 'Winnie the Poo'. The card beside Winnie said that it was OK to give the statue a stroke underneat the chin. There was a band of childring in front of me all reaching up to touch the bear's throat. I waited to do the same and found myself beside Rufus who glanced at me as if to ask if they could go first.
"Go ahead," I said, "I'm waiting for Joe."
They moved ahead of me in line and she reached out to touch the bear but her arm just wasn't strong enough. Rufus watched her, realized what she was doing and stood. He placed his front paw on the footrest and then raised to full height so that his nose lifted her elbow ... she touched the bear exactly where she wanted to. Rufus then climbed down and they left.
On our way out we saw them again. Her hand was down resting on Rufus' neck, her fingers playing with his fur. I waved goodbye as did she.
I swear Rufus smiled at me when I called out to him, "I think I need a dog too."
Sunday, November 25, 2007
Ethics
We have been waiting since to see 'August Rush' ever since we saw the trailers at the movie theatre. It opened here in the UK yesterday and we headed out to see the film first thing this morning. We went to the Trafford Centre, a shopping center whose imagination matched it's proportions. We found a disabled parking spot near the entry and headed in.
When we got to the kiosk to buy the ticket, the lovely woman who greeted us warmly, took money for only one ticket but handed us two. I'm immensely honest about these things and pointed out that she had made an error, we'd only paid for one ticket. She smiled and said that Joe did not have to pay for a ticket because he was my carer and was there to provide me assistance.
Off we went. My first thought was ... "Cool, free admission." Joe and I found seats and then he went back to get popcorn. I sat there, in the semi dark, and thought about his free ticket. I was really honest about her mistake about the money but was feeling dishonest about accepting the free ticket. Here's what went around in my head ....
Joe does provide me with assistance, getting in and out, getting popcorn and treats.
Joe and I had every intention of seeing the film, Joe is seeing it because he wants to, not because he's there with me.
Joe does 'care' for me but is not my 'carer'.
I probably make way more, I mean way more, money than the woman working at the theatre, I can really afford to pay for my ticket, Joe can afford to pay for his.
This is a benefit for all disabled people, let it go.
I'm kind of stealing from the people who made the movie.
It's an extra four pounds in my pocket.
I'm reinforcing disability stereotype.
Finally when Joe came back from getting the popcorn and pop, we talked about it. At first he was a bit annoyed ... the 'why do you always have to think about everything' kind of annoyed. Then after a few minutes he said that we should have refused the free ticket. Then a few minutes later he said, 'Well, maybe not.'
We agreed that we didn't know what was best to do ... or even if it matters a whole lot in the scheme of things. After the movie, which I cried through, we stopped for lunch and talked the ticket thing over again. Finally deciding to have a poll .... here on the blog ...
So here's the question:
Should people with disabilities who do not need a benefit turn it down? Should we have refused the free ticket and paid for Joe's seat?
Help.
When we got to the kiosk to buy the ticket, the lovely woman who greeted us warmly, took money for only one ticket but handed us two. I'm immensely honest about these things and pointed out that she had made an error, we'd only paid for one ticket. She smiled and said that Joe did not have to pay for a ticket because he was my carer and was there to provide me assistance.
Off we went. My first thought was ... "Cool, free admission." Joe and I found seats and then he went back to get popcorn. I sat there, in the semi dark, and thought about his free ticket. I was really honest about her mistake about the money but was feeling dishonest about accepting the free ticket. Here's what went around in my head ....
Joe does provide me with assistance, getting in and out, getting popcorn and treats.
Joe and I had every intention of seeing the film, Joe is seeing it because he wants to, not because he's there with me.
Joe does 'care' for me but is not my 'carer'.
I probably make way more, I mean way more, money than the woman working at the theatre, I can really afford to pay for my ticket, Joe can afford to pay for his.
This is a benefit for all disabled people, let it go.
I'm kind of stealing from the people who made the movie.
It's an extra four pounds in my pocket.
I'm reinforcing disability stereotype.
Finally when Joe came back from getting the popcorn and pop, we talked about it. At first he was a bit annoyed ... the 'why do you always have to think about everything' kind of annoyed. Then after a few minutes he said that we should have refused the free ticket. Then a few minutes later he said, 'Well, maybe not.'
We agreed that we didn't know what was best to do ... or even if it matters a whole lot in the scheme of things. After the movie, which I cried through, we stopped for lunch and talked the ticket thing over again. Finally deciding to have a poll .... here on the blog ...
So here's the question:
Should people with disabilities who do not need a benefit turn it down? Should we have refused the free ticket and paid for Joe's seat?
Help.
Saturday, November 24, 2007
The Castle
He was born at the wrong time to the right woman. 67 years ago Richard was born with Down Syndrome, his mother was informed moments after his birth that he was a defective child and should be sent to the 'Castle'. She decided then and there that no child of her's would grow up in Lennox Castle, the hospital for disabled children in her area. Doctors, unnerved at her determination to keep her child, young Richard, informed her that because he had Down Syndrome he would die young that his 'fourth birthday' would be his last.
She loved that baby.
Loved him.
When his first birthday approached the family began to wonder about the celebrations. It was decided then and there that Richard's first birthday would go uncelebrated, there would be no party, no cards, no gifts. This was not a result of grief, of denial, of shame. Richard's mom decided that if he didn't have a first birthday - he could never have a last one. If he didn't turn one, then he wouldn't turn two, if he didn't turn two he wouldn't turn three, and if he didn't turn three then he'd not celebrate his last - the fourth. Instead, family celebrations intensified. Christmas and Easter and all the rest became huge family celebrations. More than ever before the family pulled together. Celebrated every life together.
Richard never knew a birthday party.
He never turned one.
His neices and nephews, his great neices and nephews, never even knew how old their uncle was. Richard was hospitalized only once in his life. His family filled his room, many stayed with him through the nights, through the days, caring for him in shifts. Nurses had to constantly ask people to move and give them room to work. Though very ill, Richard pulled through ... as if his family had lassooed his soul and pulled it back from heaven's shore.
It was then that one of the boys took a look at the plastic wristband the hospital had placed around Richard's wrist to see how old his uncle was, no one knew. Because he'd never had a first birthday.
Richard died three years ago. Calculations showed that he'd lived for 64 years. He lived loved. He lived part of a family that celebrated belonging to him. There were "Richard" traditions, at every family wedding, after the dance between bride and groom, Richard took the floor with the bride. With every new home or apartment, Richard was the first overnight guest.
At his funeral, the whole family decided to walk behind the casket. They wanted not to be in cars hidden from view. They wanted to walk, publicly proclaiming their membership in Richard's family. This boy who was to be sent to the castle, lived his life a king. This boy who was to die at 4 had a mother that stole birthdays away and gave celebration to every day. This boy who was to be hidden died - and 5 generations of his family walked behind his coffin.
Crying.
***
I am in Falkirk, just about to start a day's long lecture, and my host Helen, is telling me the story of her husband's uncle Richard. I begged her to let me write his story here on my blog. She graciously gave me permission.
Thank you Helen, for a wonderful day with the staff there at Falkirk. And for the gift of Richard's story.
She loved that baby.
Loved him.
When his first birthday approached the family began to wonder about the celebrations. It was decided then and there that Richard's first birthday would go uncelebrated, there would be no party, no cards, no gifts. This was not a result of grief, of denial, of shame. Richard's mom decided that if he didn't have a first birthday - he could never have a last one. If he didn't turn one, then he wouldn't turn two, if he didn't turn two he wouldn't turn three, and if he didn't turn three then he'd not celebrate his last - the fourth. Instead, family celebrations intensified. Christmas and Easter and all the rest became huge family celebrations. More than ever before the family pulled together. Celebrated every life together.
Richard never knew a birthday party.
He never turned one.
His neices and nephews, his great neices and nephews, never even knew how old their uncle was. Richard was hospitalized only once in his life. His family filled his room, many stayed with him through the nights, through the days, caring for him in shifts. Nurses had to constantly ask people to move and give them room to work. Though very ill, Richard pulled through ... as if his family had lassooed his soul and pulled it back from heaven's shore.
It was then that one of the boys took a look at the plastic wristband the hospital had placed around Richard's wrist to see how old his uncle was, no one knew. Because he'd never had a first birthday.
Richard died three years ago. Calculations showed that he'd lived for 64 years. He lived loved. He lived part of a family that celebrated belonging to him. There were "Richard" traditions, at every family wedding, after the dance between bride and groom, Richard took the floor with the bride. With every new home or apartment, Richard was the first overnight guest.
At his funeral, the whole family decided to walk behind the casket. They wanted not to be in cars hidden from view. They wanted to walk, publicly proclaiming their membership in Richard's family. This boy who was to be sent to the castle, lived his life a king. This boy who was to die at 4 had a mother that stole birthdays away and gave celebration to every day. This boy who was to be hidden died - and 5 generations of his family walked behind his coffin.
Crying.
***
I am in Falkirk, just about to start a day's long lecture, and my host Helen, is telling me the story of her husband's uncle Richard. I begged her to let me write his story here on my blog. She graciously gave me permission.
Thank you Helen, for a wonderful day with the staff there at Falkirk. And for the gift of Richard's story.
Friday, November 23, 2007
Fire in Falkirk
It's Friday, it's Falkirk, it'a tough morning. The hotel's alarm system went off last night and we immediately called downstairs to find out if we were in imminent danger, flames licking at our door. No, no we were told, it was a false alarm. But, they also told us, they didn't know how to shut it off. So we laid in bed with the lights off as the sound blasted us for what seemed like hours. A second call down had the clerk annoyed, it would only be a 'wee while' and we needed to be a 'wee bit patient'. Instead I just got a wee bit angry.
My reaction to fire alarms has changed over the two years that I have been disabled. I am on the third floor of this hotel, that's four flights up (given the European's inability to count). The elevator is not usable during fire. I am suddenly very alone and very vulnerable. I looked to see where the 'gather point' was for those with disabilities and it's out in the hallway, near the end. Hey, about where you'd expect a fire.
While the image of a fireman, all rough and sweaty, carrying me down a ladder might sound a bit Scarlet and Rhett but it scares the hell out of me. I can just imagine some guy hollering down, "Hey, Hal, we got a meaty one up here." I can imagine being left for last, dragged out of a window that's too small, plummetting to a safety ring and tearing through hitting the ground.
But it was a false alarm.
That kept ringing and ringing and ringing.
Reminding me, at every bleep, that my world was no longer as safe as it was before. It's been a tough night with little sleep, and the day is yet to come.
My reaction to fire alarms has changed over the two years that I have been disabled. I am on the third floor of this hotel, that's four flights up (given the European's inability to count). The elevator is not usable during fire. I am suddenly very alone and very vulnerable. I looked to see where the 'gather point' was for those with disabilities and it's out in the hallway, near the end. Hey, about where you'd expect a fire.
While the image of a fireman, all rough and sweaty, carrying me down a ladder might sound a bit Scarlet and Rhett but it scares the hell out of me. I can just imagine some guy hollering down, "Hey, Hal, we got a meaty one up here." I can imagine being left for last, dragged out of a window that's too small, plummetting to a safety ring and tearing through hitting the ground.
But it was a false alarm.
That kept ringing and ringing and ringing.
Reminding me, at every bleep, that my world was no longer as safe as it was before. It's been a tough night with little sleep, and the day is yet to come.
Thursday, November 22, 2007
Sexy Beast
"He's so getting laid," Joe said looking back into the bar behind me. The traffic had been terrible between Glasgow and Edinburgh. First it took two hours to cross the top of Glasgow and then another hour to make it round Edinburgh's city bypass. Three hours and fifteen minutes to go less than forty miles. We were exhausted.
After getting into the room we decided to go for a quick drink in the 'bistro bar' attached to the hotel. I desperately wanted a tea, Joe wanted something frothier. We sit and begin to chat about the day and the people we'd met in Glasgow. We were both full of the good feeling of having met nice people who responded well to the challenges and ideas in the presentation.
Then Joe noticed a couple in a darker corner of the hotel and comments that they were clearly 'into each other'. I carefully glance around and see them. "Yep, they were on the slippery slope that leads to slippery sport. Eyes glued to each other, conversation quiet and husky, his eyes burned, hers smoldered. It's a hotel. You expect this.
We ordered one more for the road. This loses it's romaticism when the one more is green tea, but Joe was keeping faith for the family with a Stella 'Stash. The couple finished their drinks and then made ready to leave. We both kind of winked at each other wondering how fast they'd be making mattress music once they got to the room.
The man was standing now and offered his arm to the woman, who smiled up at him and took his arm. She then swung round to gather two crutches and expertly fitted the arm braces to her forearms. They were off. Both walking with real purpose past us and into the hotel.
A perfectly natural sight. Young lovers in love. I looked quickly around and saw nothing, but maybe envy, on the faces of others in the room.
OK, I like this a momentary break in the monotonous routine of disability prejudices and preconceptions. A woman can be beautiful and breathy with a body on crutches. Think television will ever catch up?
After getting into the room we decided to go for a quick drink in the 'bistro bar' attached to the hotel. I desperately wanted a tea, Joe wanted something frothier. We sit and begin to chat about the day and the people we'd met in Glasgow. We were both full of the good feeling of having met nice people who responded well to the challenges and ideas in the presentation.
Then Joe noticed a couple in a darker corner of the hotel and comments that they were clearly 'into each other'. I carefully glance around and see them. "Yep, they were on the slippery slope that leads to slippery sport. Eyes glued to each other, conversation quiet and husky, his eyes burned, hers smoldered. It's a hotel. You expect this.
We ordered one more for the road. This loses it's romaticism when the one more is green tea, but Joe was keeping faith for the family with a Stella 'Stash. The couple finished their drinks and then made ready to leave. We both kind of winked at each other wondering how fast they'd be making mattress music once they got to the room.
The man was standing now and offered his arm to the woman, who smiled up at him and took his arm. She then swung round to gather two crutches and expertly fitted the arm braces to her forearms. They were off. Both walking with real purpose past us and into the hotel.
A perfectly natural sight. Young lovers in love. I looked quickly around and saw nothing, but maybe envy, on the faces of others in the room.
OK, I like this a momentary break in the monotonous routine of disability prejudices and preconceptions. A woman can be beautiful and breathy with a body on crutches. Think television will ever catch up?
Wednesday, November 21, 2007
At The Metro Center
There were four of them. Mom and Dad and two kids. Both kids had disabilities. One with Down Syndrome, and the other in a wheelchair with cerebral palsy. They were sitting at a table at Wetherspoons - an awesome restaurant with reasonable priced food and a large vegetarian selection. I had already made a nuisance of my self by asking a guy if he'd move to a table further in because my wheelchair couldn't make it to the available table. He didn't want to, but he did, and I thanked him for it.
It was chock a block in the mall and Joe went to place the order. Beside me were a young couple, in thier early twenties I'd guess. They looked upset to be stuck between two disabled kids on one side and me on the other. Deal with it. In the end the lost interest in me but kept glancing at the other table.
At first their conversation was solely about the relationship between adults and children. Were they biological parents to the two kids, were they adoptive parents, were they paid carers on an outing? This debate took on a zeal of it's own. They were deep into this conversation. Luckily those at the other table didn't seem to notice. They were laughing, having fun, getting food all over and finding it hilarious. The young man with Down Syndrome had a very serious level of disability but he caught the humour and the mood of the table and every now an then a loud unrestrained and unrefined laugh burst out.
Finally the two decided that given hair colour and other cues, the two adults were probably parents. That didn't end the discussion. The woman said, "Can you imagine having another child when the first one turned out ... bad like that?" Boyfriend heartily agreed. They then dove into a genetics discussion that was frightening in the calmness with which they spoke of using genetics to search and destroy.
All the while a family, because that's what it was, was having a delightful lunch together. Goodness knows those two parents work hard to care for those two kids. Goodness knows that they probably have few opportunities to just sit and relax and enjoy. Goodness knows the goodness they have discovered in themselves and others.
I wonder about the baby this couple may one day have.
And worry for it's future.
It was chock a block in the mall and Joe went to place the order. Beside me were a young couple, in thier early twenties I'd guess. They looked upset to be stuck between two disabled kids on one side and me on the other. Deal with it. In the end the lost interest in me but kept glancing at the other table.
At first their conversation was solely about the relationship between adults and children. Were they biological parents to the two kids, were they adoptive parents, were they paid carers on an outing? This debate took on a zeal of it's own. They were deep into this conversation. Luckily those at the other table didn't seem to notice. They were laughing, having fun, getting food all over and finding it hilarious. The young man with Down Syndrome had a very serious level of disability but he caught the humour and the mood of the table and every now an then a loud unrestrained and unrefined laugh burst out.
Finally the two decided that given hair colour and other cues, the two adults were probably parents. That didn't end the discussion. The woman said, "Can you imagine having another child when the first one turned out ... bad like that?" Boyfriend heartily agreed. They then dove into a genetics discussion that was frightening in the calmness with which they spoke of using genetics to search and destroy.
All the while a family, because that's what it was, was having a delightful lunch together. Goodness knows those two parents work hard to care for those two kids. Goodness knows that they probably have few opportunities to just sit and relax and enjoy. Goodness knows the goodness they have discovered in themselves and others.
I wonder about the baby this couple may one day have.
And worry for it's future.
Tuesday, November 20, 2007
Lunch
We left Newcastle and headed up the A1 on our way to Glasgow via Edinburgh ... there are shorter ways but we wanted to drive along the coast and though it was a gray and rainy day - the beauty was undiminished. Around one we began to feel peckish so decided to stop at a travel center place and grab a bite to eat. I love these places, they have restaurants and stores and lots of stuff to browse through.
We went into a chain restaurant kind of place and they sat me at a table near the reception area, it was a nice table, I was out of the way, and I could look out the window at the steady flow of people in and out of the center. We ordered our food, got our hands on a hot tea, and sat back to relax. This is our last day off, the next 19 working days I will be lecturing somewhere. The packet telling me where I'm going to be was lost and and and a new one is being frantically prepared, all I know is that Tuesday is Glasgow. After that I'm stymied.
As we were having lunch I noticed the bus boy, or rather I noticed his chest. He was a good looking young man of about 20, a hard worker, and was easy with his plesantries to the other staff and guests. But what I really noticed was a tag, upside down, on his shirt right beside his name. I think the idea was for it to blend in with the name, but I'm a 'watcher'.
When he came by, I asked him what the sign meant. It said "4 X 16 X W". He looked at me and said, "You don't know?" I shook my head. "Oh, I can tell from your accent that you aren't from here." I quickly told him that I was from Canada as I get tired of being mistaken as an American (nothing against Americans, I'm just not one). "Oh, he said and moved off leaving my question unanswered.
A little later he came by the but sign had changed to "100% B 2 L". And he saw me attempting to read the upside down tag. He came by and said, "You from around here?" I told him, again, we were from Canada. "You were looking at me so I thought maybe I knew you." I explained that I was more looking at the tag than at him.
"You want to know about the tag?" he asked.
I told him I did.
He pulled up a chair and said that he'd had a fairly serious motorcycle accident and sustained some brain damage. When he got out of hospital, everything was difficult because while he could physically do everything, his memory was 'crap'. He had been head waiter at this restaurant and it was obvious he couldn't do that anymore but his employers wanted to keep him on, good worker and all. So they came up with a system that marks his duties down one at a time. At particular times of the day, he takes off one tag and puts on another.
"This tag," he says, "is to remind me that right now we are changed over 100 per cent of the tables over from breakfast style settings to lunch style settings. The tag before ... um ... do you remember what it was." I did and told him it was 4 X 16 X W. "Oh, that means that I'm taking care of those tables there by the window.There are 16 tables in 4 rows."
He explained that the system messed up when they had special parties or holiday events but for the most part he did just fine. Loved having a job and working. As he left, he told us that if we came back, on own way down from Edinburgh, stop in but not to think he was rude if he didn't remember us. Most of the diners at the place know him, his family, the circumstance. They just introduce themselves again, "You do the same."
We said he would.
On the way out I nudged Joe to look at the wall beside the cash register. A black felt board hung there with all the tags that would take him through his shift. He looked to be about half done.
And fully supported
We went into a chain restaurant kind of place and they sat me at a table near the reception area, it was a nice table, I was out of the way, and I could look out the window at the steady flow of people in and out of the center. We ordered our food, got our hands on a hot tea, and sat back to relax. This is our last day off, the next 19 working days I will be lecturing somewhere. The packet telling me where I'm going to be was lost and and and a new one is being frantically prepared, all I know is that Tuesday is Glasgow. After that I'm stymied.
As we were having lunch I noticed the bus boy, or rather I noticed his chest. He was a good looking young man of about 20, a hard worker, and was easy with his plesantries to the other staff and guests. But what I really noticed was a tag, upside down, on his shirt right beside his name. I think the idea was for it to blend in with the name, but I'm a 'watcher'.
When he came by, I asked him what the sign meant. It said "4 X 16 X W". He looked at me and said, "You don't know?" I shook my head. "Oh, I can tell from your accent that you aren't from here." I quickly told him that I was from Canada as I get tired of being mistaken as an American (nothing against Americans, I'm just not one). "Oh, he said and moved off leaving my question unanswered.
A little later he came by the but sign had changed to "100% B 2 L". And he saw me attempting to read the upside down tag. He came by and said, "You from around here?" I told him, again, we were from Canada. "You were looking at me so I thought maybe I knew you." I explained that I was more looking at the tag than at him.
"You want to know about the tag?" he asked.
I told him I did.
He pulled up a chair and said that he'd had a fairly serious motorcycle accident and sustained some brain damage. When he got out of hospital, everything was difficult because while he could physically do everything, his memory was 'crap'. He had been head waiter at this restaurant and it was obvious he couldn't do that anymore but his employers wanted to keep him on, good worker and all. So they came up with a system that marks his duties down one at a time. At particular times of the day, he takes off one tag and puts on another.
"This tag," he says, "is to remind me that right now we are changed over 100 per cent of the tables over from breakfast style settings to lunch style settings. The tag before ... um ... do you remember what it was." I did and told him it was 4 X 16 X W. "Oh, that means that I'm taking care of those tables there by the window.There are 16 tables in 4 rows."
He explained that the system messed up when they had special parties or holiday events but for the most part he did just fine. Loved having a job and working. As he left, he told us that if we came back, on own way down from Edinburgh, stop in but not to think he was rude if he didn't remember us. Most of the diners at the place know him, his family, the circumstance. They just introduce themselves again, "You do the same."
We said he would.
On the way out I nudged Joe to look at the wall beside the cash register. A black felt board hung there with all the tags that would take him through his shift. He looked to be about half done.
And fully supported
Monday, November 19, 2007
Honk if You Love ....
I don't like being in the way. Really don't like it. I think it's because I grew up fat ... fatty fatty two by four can't get through the kitchen door ... and was always made keenly aware of my size and the space available. Interestingly I've noticed that other fat folk seem to have similar approaches to space. Yesterday in the restaurant having breakfast I noticed a young very skinny woman sitting down at a table for six - with no thought of the lineup at the door - while a very large couple crowded into a small area that really was appropriate for only one. I'da done the same. Take up less space, avoid angry stares.
The wheelchair has only amplified this. I tire and sometimes have to stop when pushing myself from one place to another. Every time I look to park somewhere out of the way, I don't want two footers to vault over me. Joe's even worse about this, he'll grab my chair and move me while I'm paying for something so that someone can get more easily by. We've, um, discussed this a number of times.
Then yesterday we went to Tesco's to do some shopping and all the disabled parking bays were taken. We managed to find parking fairly close to the store but the parking bay was very narrow. I got out of the car and stood, bracing myself against the car next. Joe managed to get the chair out of our hire car and off we went.
On our way back the parking lot was pandemonium with way too many cars looking for way too few spaces. There was no way that Joe could get the wheelchair back in the car. So I waited while he backed the car up and got it parked so that I could get in and the wheelchair could be loaded. I got in easily but Joe took a few seconds to get the feet off the chair and loaded. Then he was folding the chair to put it in.
It was evident for all the world to see that we had parked in an available spot, that the spot wasn't wide enough to get the chair in, and there were people honking. Honking. Angry honking. Hurry up you are in our way, honking. Honking displeasure. Honk if you love yourself - honking. I could see Joe's blood pressure rise and his coordination fall. He was rushing so much that he couldn't get the chair in the back door.
Now the cars are screaming angry. With a huge shove Joe got the wheelchair into the back and then hopped in the car and drove away. He was upset that WE were in THEIR way. I was upset that THEY were in OUR way. Their attitude and their anger was in the way of us just getting about our business.
Is anyone so important that waiting for 5 minutes for a wheelchair to get put into a car is a bother?
What's happened to manners and civility?
Ah, the joys of travel.
The wheelchair has only amplified this. I tire and sometimes have to stop when pushing myself from one place to another. Every time I look to park somewhere out of the way, I don't want two footers to vault over me. Joe's even worse about this, he'll grab my chair and move me while I'm paying for something so that someone can get more easily by. We've, um, discussed this a number of times.
Then yesterday we went to Tesco's to do some shopping and all the disabled parking bays were taken. We managed to find parking fairly close to the store but the parking bay was very narrow. I got out of the car and stood, bracing myself against the car next. Joe managed to get the chair out of our hire car and off we went.
On our way back the parking lot was pandemonium with way too many cars looking for way too few spaces. There was no way that Joe could get the wheelchair back in the car. So I waited while he backed the car up and got it parked so that I could get in and the wheelchair could be loaded. I got in easily but Joe took a few seconds to get the feet off the chair and loaded. Then he was folding the chair to put it in.
It was evident for all the world to see that we had parked in an available spot, that the spot wasn't wide enough to get the chair in, and there were people honking. Honking. Angry honking. Hurry up you are in our way, honking. Honking displeasure. Honk if you love yourself - honking. I could see Joe's blood pressure rise and his coordination fall. He was rushing so much that he couldn't get the chair in the back door.
Now the cars are screaming angry. With a huge shove Joe got the wheelchair into the back and then hopped in the car and drove away. He was upset that WE were in THEIR way. I was upset that THEY were in OUR way. Their attitude and their anger was in the way of us just getting about our business.
Is anyone so important that waiting for 5 minutes for a wheelchair to get put into a car is a bother?
What's happened to manners and civility?
Ah, the joys of travel.
Sunday, November 18, 2007
A Moment of Truth
Driving up to Newcastle we stopped at a service center, because we are both over 50 and peeing now takes up about 30% of our day. The disabled washroom was up quite a steep little ramp, I would have simply used the men's room but the door was too narrow for my chair. Once we got up the ramp we discovered that the key to the washroom was kept at the cashier's desk so Joe went off in search of the key.
A young mother was waiting for her 4 kids to come out of various bathrooms. Her oldest boy was zipping around the area, searching out even the smallest inclines, using his 'wheels in running shoes' to careen him down slopes. "Kirsten, settle down," she said, exasperated as one of his 'whooshes' brought him perilously close to falling. He just grinned up at her and zipped by.
She saw me notice that he had Down Syndrome and gave me 'the face' but I simply smiled at her and went back to watching Kirsten scream with delight as he went down the ramp built for me to get up to the washroom. It was steep and he really travelled as he flew down the ramp. By then his sister, maybe a year younger, was out and made some comment about the brother still in the washroom.
Kirsten flew by her grabbing her and spinning her. She laughed but called after him, "Stop that Kirsten." Seconds later the other boy came out of the washroom and asked if they could all go into the shop before getting back on the road. Mom called Kirsten over and gave them all a lecture that they were not to use the wheels in the shop. That they'd break things. That she'd break them. All agreed.
Quickly Kirsten came to the ramp beside me and called to his mom, "Just one more time," and zipped down the ramp. She smiled over at me with a 'Kids, what do you do with kids' look on her face.
I took a chance and said, "You know, his primary disability is that he's a boy."
She erupted into laughter saying, "You don't know how true that is."
A young mother was waiting for her 4 kids to come out of various bathrooms. Her oldest boy was zipping around the area, searching out even the smallest inclines, using his 'wheels in running shoes' to careen him down slopes. "Kirsten, settle down," she said, exasperated as one of his 'whooshes' brought him perilously close to falling. He just grinned up at her and zipped by.
She saw me notice that he had Down Syndrome and gave me 'the face' but I simply smiled at her and went back to watching Kirsten scream with delight as he went down the ramp built for me to get up to the washroom. It was steep and he really travelled as he flew down the ramp. By then his sister, maybe a year younger, was out and made some comment about the brother still in the washroom.
Kirsten flew by her grabbing her and spinning her. She laughed but called after him, "Stop that Kirsten." Seconds later the other boy came out of the washroom and asked if they could all go into the shop before getting back on the road. Mom called Kirsten over and gave them all a lecture that they were not to use the wheels in the shop. That they'd break things. That she'd break them. All agreed.
Quickly Kirsten came to the ramp beside me and called to his mom, "Just one more time," and zipped down the ramp. She smiled over at me with a 'Kids, what do you do with kids' look on her face.
I took a chance and said, "You know, his primary disability is that he's a boy."
She erupted into laughter saying, "You don't know how true that is."
Saturday, November 17, 2007
Nice
We arrived at Heathrow after a relatively comfortable flight, I even slept a little. We usually have trouble at airports as I use my own chair and the 'assistants' who show up to give me a push to the baggage area always bring their own chair - assuming that most disabled passengers are 'distance disabled' and are ambulatory in the rest of their lives. I've encountered actual hostility at the fact that I am in my own chair and the 'assistant' doesn't want to leave their chair behind to get me to where I want to go.
The woman who was there to assist was not hostile about my chair but she was damned and determined not to leave her chair behind and it was a comic dance trying to figure out how to get both chairs to our destination. Though I don't think she meant it, I ended up feeling like a total inconvenience to her. Not a nice way to begin our UK trip.
As we entered the baggage hall, I asked to be left by the exit as Joe and the 'pusher' got the luggage from a carousel further along. It didn't make sense to be pushed there and then pushed back. I sat and watched as other passengers got luggage and rushed out. One woman, dressed in a business suit approached me, holding out her passport. It took me a second to realize that where I was sitting had me looking like I was in a position of authority.
"No, no," I said, "I'm just waiting here for my friends."
"Oh, sorry," she said, "you just looked very official."
She left a real smile on my face. The presumption of competence! How nice. When I live in a world where most see my chair and assume that I am a 'begger boy, begger boy' to have someone approach me without prejudice was like a drink of water.
So there it is ... the world may be full of those with prejudices and preconceptions, but there are also people who have transcended stereotype and are willing to see people with disabilities as having power and authority.
Nice.
The woman who was there to assist was not hostile about my chair but she was damned and determined not to leave her chair behind and it was a comic dance trying to figure out how to get both chairs to our destination. Though I don't think she meant it, I ended up feeling like a total inconvenience to her. Not a nice way to begin our UK trip.
As we entered the baggage hall, I asked to be left by the exit as Joe and the 'pusher' got the luggage from a carousel further along. It didn't make sense to be pushed there and then pushed back. I sat and watched as other passengers got luggage and rushed out. One woman, dressed in a business suit approached me, holding out her passport. It took me a second to realize that where I was sitting had me looking like I was in a position of authority.
"No, no," I said, "I'm just waiting here for my friends."
"Oh, sorry," she said, "you just looked very official."
She left a real smile on my face. The presumption of competence! How nice. When I live in a world where most see my chair and assume that I am a 'begger boy, begger boy' to have someone approach me without prejudice was like a drink of water.
So there it is ... the world may be full of those with prejudices and preconceptions, but there are also people who have transcended stereotype and are willing to see people with disabilities as having power and authority.
Nice.
Friday, November 16, 2007
At The Conference
Such a contrast.
Sitting in a hotel room watching a report on the plight of people with intellectual disabilities in Serbia - seeing horrific images of adult bodies twisted to fit into cribs they were never lifted out of. Hearing the cries of a people who's entire life is an experience of abuse and abandonment. While outside my room over a hundred people with disabilities were gathering to be part of a conference about rights, about voice and about freedom.
The next morning I led a session for those self advocate and for two hours we worked together, laughed together and learned together. I tried not to let those images get in the way of what I was doing. I tried to focus on the journey here to this place for those who were attending. Most were of the age to know institutionalization, to know being placed apart. Most here could speak to the issues of abuse.
It's natural to want those images to be foreign, away from us, something that others do ... but it's not. Perhaps what was shown was more extreme than what we did ... but I'm reminded of 'Christmas in Purgatory' the stunning photographic essay of institutionalization in the United States - the images weren't far off from what was shown on television.
Yet there are those who want to stem the tide of freedom for those with disabilities, want to reopen the doors of the institution, close the doors of the community. There are two things that must be at the forefront of our minds.
Never forget.
Never again.
Sitting in a hotel room watching a report on the plight of people with intellectual disabilities in Serbia - seeing horrific images of adult bodies twisted to fit into cribs they were never lifted out of. Hearing the cries of a people who's entire life is an experience of abuse and abandonment. While outside my room over a hundred people with disabilities were gathering to be part of a conference about rights, about voice and about freedom.
The next morning I led a session for those self advocate and for two hours we worked together, laughed together and learned together. I tried not to let those images get in the way of what I was doing. I tried to focus on the journey here to this place for those who were attending. Most were of the age to know institutionalization, to know being placed apart. Most here could speak to the issues of abuse.
It's natural to want those images to be foreign, away from us, something that others do ... but it's not. Perhaps what was shown was more extreme than what we did ... but I'm reminded of 'Christmas in Purgatory' the stunning photographic essay of institutionalization in the United States - the images weren't far off from what was shown on television.
Yet there are those who want to stem the tide of freedom for those with disabilities, want to reopen the doors of the institution, close the doors of the community. There are two things that must be at the forefront of our minds.
Never forget.
Never again.
Thursday, November 15, 2007
Military Might
You could tell that this was the place. We pulled into the parking lot of the Holiday Inn in Trenton and every disabled parking bay was full, there were serveral people with disabilities outside the door having a smoke. The line up waiting for rooms and registration was abuzz with humour and excitement. I'd been looking forward to this for awhile. The conference is one that is aimed at developing skills in the self advocate movement.
As we made our way through the crowd there were staff I knew and we waved or briefly chatted, there were self advocates that I knew and we did the same. It's cool being in a place where everyone looks just a little bit different. We got our keys and made it to the room only to find out that we'd been given an inaccessible room.
Back to the front.
More people were there now. They'd set it up such that those attending the conference got their conference registration, materials along with the room key from a group of volunteers at a table just inside the door. Those registering for the hotel, but not the conference, went straight to the regular registration desk of the hotel.
Two army type guys came in to register. The first thing they registered was 'Whoa, this isn't your usual lobby," before they could recover a woman with a disability gave them a huge grin and said, "You need to go to the desk over there." Military trained, military manners, they said "Thanks, ma'am." She, the ma'am, in this case thought that being called 'ma'am' was very, very funny and burst into the kind of laughter that is unrestrained.
Their faces looked impassive but I'm convinced the younger one wanted to giggle. I don't think of military men giggling but I'm sure they do.
They proceeded to the desk and were checked in shortly. But not before another van load of people with disabilities had burst through the door. Then I saw that the younger guy was now wearing an open grin.
They didn't notice me sitting in my chair, looking like Jabba the Hutt on vacation. I heard the younger guy say, "You know, this is kind of what we are fighting for isn't it. Freedom for everyone. You've got to admit this is cool ..."
And they were gone.
I don't know what they teach in military school here in Canada - but they get the most important word about inclusion in the english language.
Everyone.
As we made our way through the crowd there were staff I knew and we waved or briefly chatted, there were self advocates that I knew and we did the same. It's cool being in a place where everyone looks just a little bit different. We got our keys and made it to the room only to find out that we'd been given an inaccessible room.
Back to the front.
More people were there now. They'd set it up such that those attending the conference got their conference registration, materials along with the room key from a group of volunteers at a table just inside the door. Those registering for the hotel, but not the conference, went straight to the regular registration desk of the hotel.
Two army type guys came in to register. The first thing they registered was 'Whoa, this isn't your usual lobby," before they could recover a woman with a disability gave them a huge grin and said, "You need to go to the desk over there." Military trained, military manners, they said "Thanks, ma'am." She, the ma'am, in this case thought that being called 'ma'am' was very, very funny and burst into the kind of laughter that is unrestrained.
Their faces looked impassive but I'm convinced the younger one wanted to giggle. I don't think of military men giggling but I'm sure they do.
They proceeded to the desk and were checked in shortly. But not before another van load of people with disabilities had burst through the door. Then I saw that the younger guy was now wearing an open grin.
They didn't notice me sitting in my chair, looking like Jabba the Hutt on vacation. I heard the younger guy say, "You know, this is kind of what we are fighting for isn't it. Freedom for everyone. You've got to admit this is cool ..."
And they were gone.
I don't know what they teach in military school here in Canada - but they get the most important word about inclusion in the english language.
Everyone.
Wednesday, November 14, 2007
Booked
Arriving home from work there is an email from an old friend. We used to work together, years ago, and talk maybe two or three times a year. The tone of the email was a little different, saying that she'd lost my phone number but would like to talk to me right away. I am a castastrophizer - why have a little worry when a big one will do? The urgency communicated emergency and I quickly picked up the phone to call.
Luckily she was in. We talked a bit, I tried to keep the beating of my heart out of my ears so I could hear. There was nothing in her tone of voice that said something was wrong. And I was not, WAS NOT, going to tell her that I'd gone into a panic when I'd received her note. She's always had a biting wit and she's always mocked me for my tendancy to go from 0 to 100 with anxiety. I'm on pills for that now - she doesn't know that either.
After catching up I asked, nonchalantly, why the urgent tone in the note.
"Oh, that, I knew that would get you, it's no big deal except I know that you go away for a month every year at this time and I just wanted to get to you before you went away."
"OK, you wanted to chat?"
"No, no," there's someone else here who wants to talk to you.
Suddenly, David was on the phone saying 'Hi'. This is a guy who I worked with years and years ago, during my time working with him, I had helped organize his IPP meetings and did the 'what are your hopes and dreams' converstations with him. David was such a reasonable guy, he wanted very little and was happy with less. He would set goals that benefitted others for heaven's sake. A finely made soul lived in David. But, all in all, I wasn't sure why he was calling.
"How are you David?"
"Wait," he said, a hushed tone in his voice and I could hear pages rustle. What was he up to ...
His voice returned, stilted, "'Great. Just great!' Resting in bed, Peter was angry ..."
"Oh my God, David, oh my God!!" I started to cry.
"He wasn't quite sure who he should be angry at."
One of David's big goals for himself was that he would learn to read. He had been in a couple literacy programmes and just didn't manage to pick up even basic skills. He was never downcast about it, always figuring there would be a next time. When my book 'Four Feet Tall' came out, I knew it would be a story that David would like so I dropped by and gave him a signed copy. He told me he would learn to read it one day.
That's today.
After celebrating with David on the phone, having him promise to talk to me again when he'd finished the book, I was put back to the staff who'd called me in the first place. I could tell she'd been crying too. She told me that one of the part timers at the house was a university student studying economics. Well that student had a friend in Education who, upon hearing David's desire to read, volunteered to do individual tutoring.
It's worked.
All those years ago David set a goal that only he believed in.
Today David acheived a goal that only he could.
Luckily she was in. We talked a bit, I tried to keep the beating of my heart out of my ears so I could hear. There was nothing in her tone of voice that said something was wrong. And I was not, WAS NOT, going to tell her that I'd gone into a panic when I'd received her note. She's always had a biting wit and she's always mocked me for my tendancy to go from 0 to 100 with anxiety. I'm on pills for that now - she doesn't know that either.
After catching up I asked, nonchalantly, why the urgent tone in the note.
"Oh, that, I knew that would get you, it's no big deal except I know that you go away for a month every year at this time and I just wanted to get to you before you went away."
"OK, you wanted to chat?"
"No, no," there's someone else here who wants to talk to you.
Suddenly, David was on the phone saying 'Hi'. This is a guy who I worked with years and years ago, during my time working with him, I had helped organize his IPP meetings and did the 'what are your hopes and dreams' converstations with him. David was such a reasonable guy, he wanted very little and was happy with less. He would set goals that benefitted others for heaven's sake. A finely made soul lived in David. But, all in all, I wasn't sure why he was calling.
"How are you David?"
"Wait," he said, a hushed tone in his voice and I could hear pages rustle. What was he up to ...
His voice returned, stilted, "'Great. Just great!' Resting in bed, Peter was angry ..."
"Oh my God, David, oh my God!!" I started to cry.
"He wasn't quite sure who he should be angry at."
One of David's big goals for himself was that he would learn to read. He had been in a couple literacy programmes and just didn't manage to pick up even basic skills. He was never downcast about it, always figuring there would be a next time. When my book 'Four Feet Tall' came out, I knew it would be a story that David would like so I dropped by and gave him a signed copy. He told me he would learn to read it one day.
That's today.
After celebrating with David on the phone, having him promise to talk to me again when he'd finished the book, I was put back to the staff who'd called me in the first place. I could tell she'd been crying too. She told me that one of the part timers at the house was a university student studying economics. Well that student had a friend in Education who, upon hearing David's desire to read, volunteered to do individual tutoring.
It's worked.
All those years ago David set a goal that only he believed in.
Today David acheived a goal that only he could.
Tuesday, November 13, 2007
Acting Rash
A while ago I wrote about getting an infection and having IV antibiotics. I haven't revisited that topic because the infection, while slow the heal, was healing. I hadn't had an infection like that for over two years so it depressed me more than anything. But I did what I needed to to, took whacks of antibiotics, rested well, you know the drill. Well, as of yesterday the infection was getting smaller every day, the pain was less - I was popping fewer T3's to get through the day.
But I noticed that my hands were drying up, skin was falling off, my lips became chapped and my tongue really sore. So, I called the Doctor. I've got a Doctor that returns calls and chats over the phone when needed. He called me back a few minutes after I explained the symptoms to the receptionist and he told me that I was having an allergic reaction to the antibiotic and that he was glad I called when I did.
So in a few hours I start the new antibiotic and expect that it will wipe up what's left of the infection. Already my body is healing itself from the allergic reaction. My hands are no longer flaking and my lips are back to being full and luscious. And I haven't been off the pills for 24 hours yet. Amazing.
Oddly, this reminded me when I was working direct care in a group home years ago. There was an amazing group of staff there serving some very cool people with disabilities. It was the one and only time I worked residential care and I couldn't believe what a great job it was. We were helping people live their lives at home. They'd all come from the institution, they'd all been recently freed. I loved it.
Almost.
A new staff was hired who came in angry. I don't know what kind of questions people ask in interviews but - really - sometimes you think they just sign 'em up and put 'em in. The new staff saw 'problems' everywhere, wrote 'programmes' for everything, felt we were 'letting them get away with way too much'. Staff meetings which had been fun became difficult and left everyone feeling frustrated, put down and undervalued. A fun workplace had become a difficult one.
But it was worse for those with disabilities. They had to bear the brunt of the new programmes, the twisted expectations ... they had come 'home' to the community and now their home had become a ward. Their wasn't an aspect of our service that wasn't effected. We laughed less. We did less. We began to form cliques and work became about staff politics not client rights.
It's possible, I now realize, for whole agencies to have an allergic reaction to a toxic attitude. This is why I believe that 'attitude' tops the list of desirable traits in staff. We can train everything but attitude.
I remember the day that the 'new staff' left to take on a new job in another agency. We took a breath, waited for healing, and it came. A lightness came back into the work and everyone seemed so much happier.
I've made a new resolution, now that my body is healing both from infection and from a reaction to treatment - I'm going to ensure that what's toxic in my personality stay far from work. That I'm going to imagine an attitude check at the door to the office - with a border guard standing by checking credentials.
Because I control my attitude.
And I don't want to give my agency a rash.
But I noticed that my hands were drying up, skin was falling off, my lips became chapped and my tongue really sore. So, I called the Doctor. I've got a Doctor that returns calls and chats over the phone when needed. He called me back a few minutes after I explained the symptoms to the receptionist and he told me that I was having an allergic reaction to the antibiotic and that he was glad I called when I did.
So in a few hours I start the new antibiotic and expect that it will wipe up what's left of the infection. Already my body is healing itself from the allergic reaction. My hands are no longer flaking and my lips are back to being full and luscious. And I haven't been off the pills for 24 hours yet. Amazing.
Oddly, this reminded me when I was working direct care in a group home years ago. There was an amazing group of staff there serving some very cool people with disabilities. It was the one and only time I worked residential care and I couldn't believe what a great job it was. We were helping people live their lives at home. They'd all come from the institution, they'd all been recently freed. I loved it.
Almost.
A new staff was hired who came in angry. I don't know what kind of questions people ask in interviews but - really - sometimes you think they just sign 'em up and put 'em in. The new staff saw 'problems' everywhere, wrote 'programmes' for everything, felt we were 'letting them get away with way too much'. Staff meetings which had been fun became difficult and left everyone feeling frustrated, put down and undervalued. A fun workplace had become a difficult one.
But it was worse for those with disabilities. They had to bear the brunt of the new programmes, the twisted expectations ... they had come 'home' to the community and now their home had become a ward. Their wasn't an aspect of our service that wasn't effected. We laughed less. We did less. We began to form cliques and work became about staff politics not client rights.
It's possible, I now realize, for whole agencies to have an allergic reaction to a toxic attitude. This is why I believe that 'attitude' tops the list of desirable traits in staff. We can train everything but attitude.
I remember the day that the 'new staff' left to take on a new job in another agency. We took a breath, waited for healing, and it came. A lightness came back into the work and everyone seemed so much happier.
I've made a new resolution, now that my body is healing both from infection and from a reaction to treatment - I'm going to ensure that what's toxic in my personality stay far from work. That I'm going to imagine an attitude check at the door to the office - with a border guard standing by checking credentials.
Because I control my attitude.
And I don't want to give my agency a rash.
Monday, November 12, 2007
Today
It's 9:30 and I'm only now writing my blog. Usually I'm up writing before 6 and have the days post published by 6:30. But ...
you ever have one of those mornings ...
where molassas runs in your veins
where tying a shoe is a challenge
where having a conversation that doesn't turn into a fight is difficult
where you are living at the edge of sanity ...
it was one of those mornings.
I checked the calander four or five times to make sure that it was Monday, that I had to go to work, that I didn't have the option of crawling back into bed and crying. But it was Monday. I have meetings today. Things to do, people to see.
Arriving at the office I grumbled as I got out of the car. Who the hell thought up this idea of working for money. Please.
But coming in the door and being surrounded by people talking, working, laughing ... doing things of import. Sitting down at my desk with the phone ringing already and the message light flashing.
It matters that I got up.
How lucky is that?
you ever have one of those mornings ...
where molassas runs in your veins
where tying a shoe is a challenge
where having a conversation that doesn't turn into a fight is difficult
where you are living at the edge of sanity ...
it was one of those mornings.
I checked the calander four or five times to make sure that it was Monday, that I had to go to work, that I didn't have the option of crawling back into bed and crying. But it was Monday. I have meetings today. Things to do, people to see.
Arriving at the office I grumbled as I got out of the car. Who the hell thought up this idea of working for money. Please.
But coming in the door and being surrounded by people talking, working, laughing ... doing things of import. Sitting down at my desk with the phone ringing already and the message light flashing.
It matters that I got up.
How lucky is that?
Sunday, November 11, 2007
Antidotes
Flipping around the television stations in a hotel room we fell upon an old Bruce Willis movie neither of us had seen. We were both grumpy from the days events and were both struggling to regain control of the rest of the day. When suddenly there was a 'Screech' and a 'Crunch' and we were both glued to the screen.
There ain't much that goes wrong that can't be fixed by a good car chase.
I came out of the store in the mall, fuming, I'd tried to get help from a clerk who just couldn't see me. I wouldn't have needed any help at all if the aisles had been just a little bit wider. But she just would not, either see me or hear me. I burned. After pushing into the mall, I noticed that they had a coffee shop plunked in the middle of the walkway.
There ain't much that goes wrong that can't be fixed by a good cuppa tea.
Answering the phone as I was powering up the laptop to write my daily blog, I simply said 'hello'. On the phone was a woman who had taken exception to something I had said in a lecture. Even though we had talked on the day, agreed to disagree on the point, she's been calling every few days to continue the discussion. It's beginning to feel like stalking. I try to stay calm and listen. It's hard. I check hotmail and find my niece has sent me an email.
There ain't much that goes wrong that can't be fixed by a joke email about testicles.
Perhaps it's because it's Sunday and I'm at home and feeling peaceful, perhaps it's because I'm feeling like I'm in a state of gratitude ... but I marvel at the ways - in each day - no matter the hardship - the indignity - the sheer grind of living - there are antidotes to what could poison a day, an attitude, a life.
So ... "Hey, God, Thanks."
There ain't much that goes wrong that can't be fixed by a good car chase.
I came out of the store in the mall, fuming, I'd tried to get help from a clerk who just couldn't see me. I wouldn't have needed any help at all if the aisles had been just a little bit wider. But she just would not, either see me or hear me. I burned. After pushing into the mall, I noticed that they had a coffee shop plunked in the middle of the walkway.
There ain't much that goes wrong that can't be fixed by a good cuppa tea.
Answering the phone as I was powering up the laptop to write my daily blog, I simply said 'hello'. On the phone was a woman who had taken exception to something I had said in a lecture. Even though we had talked on the day, agreed to disagree on the point, she's been calling every few days to continue the discussion. It's beginning to feel like stalking. I try to stay calm and listen. It's hard. I check hotmail and find my niece has sent me an email.
There ain't much that goes wrong that can't be fixed by a joke email about testicles.
Perhaps it's because it's Sunday and I'm at home and feeling peaceful, perhaps it's because I'm feeling like I'm in a state of gratitude ... but I marvel at the ways - in each day - no matter the hardship - the indignity - the sheer grind of living - there are antidotes to what could poison a day, an attitude, a life.
So ... "Hey, God, Thanks."
Saturday, November 10, 2007
I Fell in Love
I fell in love, hard.
Beauty always overwhelms me.
Going to give a lecture, anywhere, has both Joe and I tense a little before arriving. What kind of accessible issues are we going to face? Cut curbs that are indentations in concrete rather than ramps from one level service to another? Doors made for the hips of skinny model women? Door openners that are for service or for show? Every new lecture venue has it's own challenges, we get there, get through and then make a list of what they really need to do if they want people with disabilities to feel welcome.
Well, it's different here in Grand Rapids, Michigan. I lectured yesterday for staff (and will again today for parents) in the Grand Valley State University, pew campus. The place is brand new. It's design is welcoming. But, but, but, it's like who ever designed it incoporated accessibility into every feature. From the parking lot in we faced no obsticles. They even had this area where you go in through one door and then a few seconds later through another. You push the blue badge guy on the wall and the first door opens and the second door opens on your approach. Magic.
The lecture hall was sumptuous. The kind of place that audiences love but for me, upon hearing I was on a stage, I expected unweildy ramps at impossible angles. not here. It was designed like they thought that perhaps one day they'd actually have a speaker in a wheelchair in front of an audence. The conspired to make that eventuality possible.
What was amazing to see that universal accessiblity, when designed for, make the buildings both more functional and more beautiful at the same time. Accessiblity, when it's not an add on, enhances the environment for everyone.
This was the first time I was in a space where I felt that, from the ground up, disability was considered. I felt welcome in the BRICKS.
I fell in love with that building.
Because I felt loved by the building.
And only because it said, in its own language in its own way, 'Welcome.'
Beauty always overwhelms me.
Going to give a lecture, anywhere, has both Joe and I tense a little before arriving. What kind of accessible issues are we going to face? Cut curbs that are indentations in concrete rather than ramps from one level service to another? Doors made for the hips of skinny model women? Door openners that are for service or for show? Every new lecture venue has it's own challenges, we get there, get through and then make a list of what they really need to do if they want people with disabilities to feel welcome.
Well, it's different here in Grand Rapids, Michigan. I lectured yesterday for staff (and will again today for parents) in the Grand Valley State University, pew campus. The place is brand new. It's design is welcoming. But, but, but, it's like who ever designed it incoporated accessibility into every feature. From the parking lot in we faced no obsticles. They even had this area where you go in through one door and then a few seconds later through another. You push the blue badge guy on the wall and the first door opens and the second door opens on your approach. Magic.
The lecture hall was sumptuous. The kind of place that audiences love but for me, upon hearing I was on a stage, I expected unweildy ramps at impossible angles. not here. It was designed like they thought that perhaps one day they'd actually have a speaker in a wheelchair in front of an audence. The conspired to make that eventuality possible.
What was amazing to see that universal accessiblity, when designed for, make the buildings both more functional and more beautiful at the same time. Accessiblity, when it's not an add on, enhances the environment for everyone.
This was the first time I was in a space where I felt that, from the ground up, disability was considered. I felt welcome in the BRICKS.
I fell in love with that building.
Because I felt loved by the building.
And only because it said, in its own language in its own way, 'Welcome.'
Friday, November 09, 2007
Ruby Waved Goodbye
They rounded the corner and saw each other.
Mike is telling me the story while showing me pictures of baby Ruby in the witch costume Joe and I had picked up for her. She looked sweet all decked out in the costume, witch hat balanced on tiny head. She loved the costume so she wore it for the whole day.
I could tell by the way Mike was getting into the story that he'd waited to see me to tell this one. Ruby is still too young to understand dressing up and the spirit of Halloween but she did understand that people were making a fuss over her in her costume and even more than that, they were giving her candy.
Mike's pleased that Ruby is living in an environment where there are peoples and cultures that she is exposed to. She's spoiled by the Indian storekeepers at the corner store. The Chinese couple who run the restaurant always come out and fuss over her. She's used to different faces, differing accents and she's learning that people are people.
But something new was added to the mix. Ruby lives very near where the Famous People Players - a troupe of people with intellectual disabilities - run a dinner theatre. They are just part of the neighbourhood so no one much notices. Well, Ruby rounded the corner and there, coming down the street was another witch. Right away she noticed that the woman with Down Syndrome was wearing the same costume.
They stopped and stared at each other.
"Well, look, I've got a little witch sister," said the woman with Down Syndrome.
Ruby walked up to her, took off her hat and offered it to her. She squatted down and said, "I've got my own hat, but thank you." Ruby giggled at the attention.
She stood and chatted with Mike a bit about her work and Halloween and then noticed the time and said, "I'd better hurry on."
Ruby waved.
"You've got a cute little girl there."
"I hope she grows up just like you," Mike said.
She froze. Looked at him to see if he was mocking her.
He wasn't.
"That's the nicest thing anyone has ever said to me."
"Well, I meant it."
She slowly turned and went to work while Ruby waved goodbye.
Mike is telling me the story while showing me pictures of baby Ruby in the witch costume Joe and I had picked up for her. She looked sweet all decked out in the costume, witch hat balanced on tiny head. She loved the costume so she wore it for the whole day.
I could tell by the way Mike was getting into the story that he'd waited to see me to tell this one. Ruby is still too young to understand dressing up and the spirit of Halloween but she did understand that people were making a fuss over her in her costume and even more than that, they were giving her candy.
Mike's pleased that Ruby is living in an environment where there are peoples and cultures that she is exposed to. She's spoiled by the Indian storekeepers at the corner store. The Chinese couple who run the restaurant always come out and fuss over her. She's used to different faces, differing accents and she's learning that people are people.
But something new was added to the mix. Ruby lives very near where the Famous People Players - a troupe of people with intellectual disabilities - run a dinner theatre. They are just part of the neighbourhood so no one much notices. Well, Ruby rounded the corner and there, coming down the street was another witch. Right away she noticed that the woman with Down Syndrome was wearing the same costume.
They stopped and stared at each other.
"Well, look, I've got a little witch sister," said the woman with Down Syndrome.
Ruby walked up to her, took off her hat and offered it to her. She squatted down and said, "I've got my own hat, but thank you." Ruby giggled at the attention.
She stood and chatted with Mike a bit about her work and Halloween and then noticed the time and said, "I'd better hurry on."
Ruby waved.
"You've got a cute little girl there."
"I hope she grows up just like you," Mike said.
She froze. Looked at him to see if he was mocking her.
He wasn't.
"That's the nicest thing anyone has ever said to me."
"Well, I meant it."
She slowly turned and went to work while Ruby waved goodbye.
Thursday, November 08, 2007
Me, Then
I saw him again last night.
I found him this morning.
In a very private place, where no one will ever look, I keep a few things of my own. Having been part of a couple for coming on to 39 years, it's very difficult to have something that's just my own. It's beside me now as I type, open to the page. He's there.
Slightly turned looking at the camera, standing in front of the kitchen counter spreading peanut butter onto bread. Even though caught by surprise, his eyes show no shock, no outrage, just a continuing sense of humiliation. Surprisingly he's no where near as fat as remembered, no where near as fat as made out by others. But it's his eyes. Already dead.
It's the only picture of him in the book, other than a frozen smile located to the left, at the back of the class photo. It was put there for laughs, 'fat guy makes self food' what a riot, what fun, here let me look at that again.
He doesn't know that he's a year away from falling in love. He doesn't know he is a lifetime away from who he will become. He thinks there is no hope. He gave up on hope as too painful a proposition. He just works at survival. He's got the message that he's stupid, he knows that he's ugly and, of course, 'worthless' tops the list. But he's only a year away from someone believing in him - and what he'll do with that belief is beyond belief. He doesn't know that there are gentle people in the world, there are teachers who will want to teach him, there are friends who will want to be near him, there are even those who will depend on him.
But he doesn't know this yet.
I put the yearbook back in it's hiding place. I close the cover on his dead eyes. I hold the book to me and try to yell down the corridors of time.
"Abuse will end."
I'm guessing that's why it matters so much to me now.
I want him to hear that.
I want others to experience that.
I never know why he visits me, that guy in that picture. I feel disconnected to him. Disconnected to my own past. But he's there, always there. At the back of my mind, at the edge of my words, in the deepest part of my work.
No one held him then, so I try to gently hold him now.
I found him this morning.
In a very private place, where no one will ever look, I keep a few things of my own. Having been part of a couple for coming on to 39 years, it's very difficult to have something that's just my own. It's beside me now as I type, open to the page. He's there.
Slightly turned looking at the camera, standing in front of the kitchen counter spreading peanut butter onto bread. Even though caught by surprise, his eyes show no shock, no outrage, just a continuing sense of humiliation. Surprisingly he's no where near as fat as remembered, no where near as fat as made out by others. But it's his eyes. Already dead.
It's the only picture of him in the book, other than a frozen smile located to the left, at the back of the class photo. It was put there for laughs, 'fat guy makes self food' what a riot, what fun, here let me look at that again.
He doesn't know that he's a year away from falling in love. He doesn't know he is a lifetime away from who he will become. He thinks there is no hope. He gave up on hope as too painful a proposition. He just works at survival. He's got the message that he's stupid, he knows that he's ugly and, of course, 'worthless' tops the list. But he's only a year away from someone believing in him - and what he'll do with that belief is beyond belief. He doesn't know that there are gentle people in the world, there are teachers who will want to teach him, there are friends who will want to be near him, there are even those who will depend on him.
But he doesn't know this yet.
I put the yearbook back in it's hiding place. I close the cover on his dead eyes. I hold the book to me and try to yell down the corridors of time.
"Abuse will end."
I'm guessing that's why it matters so much to me now.
I want him to hear that.
I want others to experience that.
I never know why he visits me, that guy in that picture. I feel disconnected to him. Disconnected to my own past. But he's there, always there. At the back of my mind, at the edge of my words, in the deepest part of my work.
No one held him then, so I try to gently hold him now.
Wednesday, November 07, 2007
Realization
There were probably nearly 60 people with disabilities there. They came in bunches, talking, jostling for seats - a joyful noise. Many I've known for years, Larry and Micky and David and Geraldine, many were new to me, new to the organization. They were all there for the second of two self advocate workshops that I was doing, both looking at rights.
As I taught, I enjoyed the easy humour we all shared together. Everytime someone came up to participate in a role play or by reading something aloud, the whole audience erupted in applause. They encouraged each other, rewarded each other, respected each other. I knew that a lot of this came from the organizations committment to self advocacy and the emphasis that was placed on 'voice' and 'power'.
But something stirred in me as I was teaching. An emotion of incredible depth. At first I didn't know what it was or where it came from. But suddenly, without warning, I felt tears building at the corners of my eyes. I was afraid I was going to simply stop teaching and begin to cry. I held on, grabbed hold of my heart and kept on going. My notes grew blurry as I followed the script of the workshop.
You see, I realized.
Suddenly realized.
I had only known them, free.
To me they have always been free.
They had lost the stink of institution hallways.
They had lost the bowed shoulders of the captive.
And they were simply, gloriously, free.
I couldn't imagine anyone ever turning the key and locking any of them away again. They had tasted freedom, they had discovered their place, they knew not only that they deserved community but also that it was owed to them.
I was, I am, part of their heritage of freedom.
I have, we have, walked from the frontiers of bias ... to this room.
They would leave here and go home.
Home.
Free.
I suppose that's worth a tear, or two.
As I taught, I enjoyed the easy humour we all shared together. Everytime someone came up to participate in a role play or by reading something aloud, the whole audience erupted in applause. They encouraged each other, rewarded each other, respected each other. I knew that a lot of this came from the organizations committment to self advocacy and the emphasis that was placed on 'voice' and 'power'.
But something stirred in me as I was teaching. An emotion of incredible depth. At first I didn't know what it was or where it came from. But suddenly, without warning, I felt tears building at the corners of my eyes. I was afraid I was going to simply stop teaching and begin to cry. I held on, grabbed hold of my heart and kept on going. My notes grew blurry as I followed the script of the workshop.
You see, I realized.
Suddenly realized.
I had only known them, free.
To me they have always been free.
They had lost the stink of institution hallways.
They had lost the bowed shoulders of the captive.
And they were simply, gloriously, free.
I couldn't imagine anyone ever turning the key and locking any of them away again. They had tasted freedom, they had discovered their place, they knew not only that they deserved community but also that it was owed to them.
I was, I am, part of their heritage of freedom.
I have, we have, walked from the frontiers of bias ... to this room.
They would leave here and go home.
Home.
Free.
I suppose that's worth a tear, or two.
Tuesday, November 06, 2007
Monday With Essex
It's been a while since I've done one but I was more excited than anxious. As I travel I do primarily workshops for staff and parents but occasionally I am asked to do one for people with disabilities. I am here in Windsor doing two days training for those associated with the Essex Association for Community Living. As they were, perhaps, the second agency in Canada to have people with disabilities in care write a 'Bill of Rights' for service, I wasn't surprised to see that over the two days I would be doing an hour long presentation to self advocates on each of those days.
There were perhaps 30 in the group and right off we had fun, and right off learning started flowing back and forth. I keep learning that my 'instant assessments' of people's skill levels are so off. A woman who had Down Syndrome came in looking disengaged from the environment and didn't respond when people said hello. She sat down heavily staring at the table. I, of course, saw a significant disability. I of course was wrong.
We talked a little about emotions and when we got to 'angry' she turned and said, "I'm angry that I was brought here and I didn't know why I was coming or what this was about. I was angry that my staff never bothered to tell me, didn't respect me enough to get my permission. I told my staff this morning that I was angered and my staff apologized to me, said she thought I'd been told, promised it wouldn't happen again."
Oh.
Then later we began talking about rights, she was the first to say that the bill of rights needed a new one added ...
We have a right to be treated with compassion and respect by staff.
Oh.
There was another fellow at the table who was listening very much to what she had been saying, "You know what you've got to tell them," he asked me.
"What?" I asked him.
"We aren't a job, we're people.'
After it was over I had to phone Nancy and let her know what had been said, the depth of the sentiment and the need to take what people were saying and really think about it.
"We aren't a job, we're people.'
Here's a challenge, over the next few days I'm going to think about that, think about what it means. I invite you to do the same.
There were perhaps 30 in the group and right off we had fun, and right off learning started flowing back and forth. I keep learning that my 'instant assessments' of people's skill levels are so off. A woman who had Down Syndrome came in looking disengaged from the environment and didn't respond when people said hello. She sat down heavily staring at the table. I, of course, saw a significant disability. I of course was wrong.
We talked a little about emotions and when we got to 'angry' she turned and said, "I'm angry that I was brought here and I didn't know why I was coming or what this was about. I was angry that my staff never bothered to tell me, didn't respect me enough to get my permission. I told my staff this morning that I was angered and my staff apologized to me, said she thought I'd been told, promised it wouldn't happen again."
Oh.
Then later we began talking about rights, she was the first to say that the bill of rights needed a new one added ...
We have a right to be treated with compassion and respect by staff.
Oh.
There was another fellow at the table who was listening very much to what she had been saying, "You know what you've got to tell them," he asked me.
"What?" I asked him.
"We aren't a job, we're people.'
After it was over I had to phone Nancy and let her know what had been said, the depth of the sentiment and the need to take what people were saying and really think about it.
"We aren't a job, we're people.'
Here's a challenge, over the next few days I'm going to think about that, think about what it means. I invite you to do the same.
Monday, November 05, 2007
Credit Where Credit is Due
She almost never let him buy the coat.
He is in the lineup in front of me. He's maybe thirty, Down Syndrome, and had picked out a new winter coat. He was alone. Quietly standing in front of me. I smiled an invitation to chat but he chose to just stand quiet instead.
When it came to his turn the clerked looked up at him and gave him one of those 'ahh' smiles ... maybe like I had done ... and then ran the coat over the scanner and the price popped up. It wasn't cheap, a bit over $150. Good taste, expensive taste.
"And how will you be paying for this?"
He, still silent, pulled out a credit card.
She looked shocked. She didn't say it alloud but her face definately screamed, 'someone gave you a credit card?' She fumbled for what to say. "I'm going to need picture ID." He pulled a health care card out of his wallet along with some kind of picture ID I didn't recognized. She looked holes through them, looked back at him, checked the name on the credit card. He stood, patiently waiting.
"I'm going to need to call my manager," she said and did.
I'm sitting there itching for a fight, for him to get mad and demand to be treated like any one else to state that this is discrimination, but he didn't. He just waited. The manager arrives and they confer, looking over at him and back at the ID's and credit card.
"Where did you get this card?' the manager asked.
"From the bank," was the answer.
"Really?"
"I have a job, I have a bank account and I have a credit card," he said. Still calm.
"I don't know if we can ..."
"There's one more thing I have," he said and they looked up questioningly.
"A lawyer."
They rang the coat through on the credit card.
Then the clerk looked over at me in my wheelchair with my purchases bundled on the till. "I have a credit card too ... do I need a lawyer too?"
She shook her head and quietly ran my items through.
The world has indeed changed.
He is in the lineup in front of me. He's maybe thirty, Down Syndrome, and had picked out a new winter coat. He was alone. Quietly standing in front of me. I smiled an invitation to chat but he chose to just stand quiet instead.
When it came to his turn the clerked looked up at him and gave him one of those 'ahh' smiles ... maybe like I had done ... and then ran the coat over the scanner and the price popped up. It wasn't cheap, a bit over $150. Good taste, expensive taste.
"And how will you be paying for this?"
He, still silent, pulled out a credit card.
She looked shocked. She didn't say it alloud but her face definately screamed, 'someone gave you a credit card?' She fumbled for what to say. "I'm going to need picture ID." He pulled a health care card out of his wallet along with some kind of picture ID I didn't recognized. She looked holes through them, looked back at him, checked the name on the credit card. He stood, patiently waiting.
"I'm going to need to call my manager," she said and did.
I'm sitting there itching for a fight, for him to get mad and demand to be treated like any one else to state that this is discrimination, but he didn't. He just waited. The manager arrives and they confer, looking over at him and back at the ID's and credit card.
"Where did you get this card?' the manager asked.
"From the bank," was the answer.
"Really?"
"I have a job, I have a bank account and I have a credit card," he said. Still calm.
"I don't know if we can ..."
"There's one more thing I have," he said and they looked up questioningly.
"A lawyer."
They rang the coat through on the credit card.
Then the clerk looked over at me in my wheelchair with my purchases bundled on the till. "I have a credit card too ... do I need a lawyer too?"
She shook her head and quietly ran my items through.
The world has indeed changed.
Sunday, November 04, 2007
Shopping
"I think you should buy one," he said grinning at me. I had in my hand a tin kaleidoscope that nostalgia had made me pick up and a childish urge had me peer into. I looked up, caught, at a freckle faced boy of about 8. I smiled back, all the encouragement he needed, "See it says 'For Kids of All Ages' right on the box." I agreed that it did say that and I was feeling like a kid.
"Then you should buy one," he said.
"Do you work here?" I asked, joking.
"Kind of, it's my mom's store," and he pointed to a woman counting out change at the till, she looked over and gave him that 'don't bother the customers' look that she'd probably given a thousand times before. Didn't deter him one bit. He started picking up the different ones and talked about the colours and which was his favourite. The one he would buy if he was shopping.
Mom started over and I waved at her indicating that it was ok.
"How long you been in the wheelchair?" he asked, one eye closed and the other peering through the tin tube.
"A couple of years," I answered directly.
"You mind?"
"Being in the chair, no I don't mind. I'm glad of it, without it I'd not be out shopping," I said.
"For Kaleidoscopes," he added.
"Yes."
I picked two and asked him to put them in the bag on the back of my wheelchair, which he did with glee. I picked up a third, they had six or seven different ones, and looked through it. These would make wonderful stocking stuffers for Christmas, I thought.
"I might have to be in a wheelchair for awhile," he says, cutting into my thoughts about Christmas and who would like one of these.
"Really," I asked, adding then because I thought he needed it, "Cool."
He looked at me startled.
I continued, "You scared about using one?"
"A little, aren't you going to ask me what's wrong with me?"
"No, there's nothing wrong with you. Walking, rolling, you're a great salesman."
"Oh," he said and I immediately thought I'd mishandled it.
"Do you want me to ask?"
"No," he was hesitant.
"You sure?"
"I have to have an operation on my hips," he blurted out, "I'm not going to walk for a while. Maybe not ever."
"I'm not going to walk again, that's OK with me, I still get around." I handed him a third and indicated that I needed it to go in the bag too.
"Three," he said excitedly, "you must be rich."
"No," I said, "I just like kaleidoscopes."
"So do I," he said, his grin was back.
"Michael, can you come over here for a minute?" He turned at his mother's call and loped off. I could see the strain on his legs as he moved.
I went on shopping and picked up a few more things. When I went to pay, Michael was no where to be seen. I smiled at his mom, "Great kid."
She nodded.
"I hope you don't mind us talking like that," I said.
"No," she said her eyes teeming with tears, "it was good for him."
"Well, he's a good kid."
"With bad hips," she added.
"Don't you think that that's better than the other way around?"
She stopped. Stared at me.
"Yes."
She counted change.
"I suppose."
"Then you should buy one," he said.
"Do you work here?" I asked, joking.
"Kind of, it's my mom's store," and he pointed to a woman counting out change at the till, she looked over and gave him that 'don't bother the customers' look that she'd probably given a thousand times before. Didn't deter him one bit. He started picking up the different ones and talked about the colours and which was his favourite. The one he would buy if he was shopping.
Mom started over and I waved at her indicating that it was ok.
"How long you been in the wheelchair?" he asked, one eye closed and the other peering through the tin tube.
"A couple of years," I answered directly.
"You mind?"
"Being in the chair, no I don't mind. I'm glad of it, without it I'd not be out shopping," I said.
"For Kaleidoscopes," he added.
"Yes."
I picked two and asked him to put them in the bag on the back of my wheelchair, which he did with glee. I picked up a third, they had six or seven different ones, and looked through it. These would make wonderful stocking stuffers for Christmas, I thought.
"I might have to be in a wheelchair for awhile," he says, cutting into my thoughts about Christmas and who would like one of these.
"Really," I asked, adding then because I thought he needed it, "Cool."
He looked at me startled.
I continued, "You scared about using one?"
"A little, aren't you going to ask me what's wrong with me?"
"No, there's nothing wrong with you. Walking, rolling, you're a great salesman."
"Oh," he said and I immediately thought I'd mishandled it.
"Do you want me to ask?"
"No," he was hesitant.
"You sure?"
"I have to have an operation on my hips," he blurted out, "I'm not going to walk for a while. Maybe not ever."
"I'm not going to walk again, that's OK with me, I still get around." I handed him a third and indicated that I needed it to go in the bag too.
"Three," he said excitedly, "you must be rich."
"No," I said, "I just like kaleidoscopes."
"So do I," he said, his grin was back.
"Michael, can you come over here for a minute?" He turned at his mother's call and loped off. I could see the strain on his legs as he moved.
I went on shopping and picked up a few more things. When I went to pay, Michael was no where to be seen. I smiled at his mom, "Great kid."
She nodded.
"I hope you don't mind us talking like that," I said.
"No," she said her eyes teeming with tears, "it was good for him."
"Well, he's a good kid."
"With bad hips," she added.
"Don't you think that that's better than the other way around?"
She stopped. Stared at me.
"Yes."
She counted change.
"I suppose."
Saturday, November 03, 2007
Forgetting
I forget all the time.
I wonder if that's normal.
Even when I'm in the wheelchair, I forget sometimes.
Years and years ago when I was a mere pup, I worked as a classroom aide with kids who had physical disabilities. I loved the job because the kids were great. There was an abundance of laughter in that room, I took the job because I had wanted to move to Toronto and wanted to work with those with intellectual disabilities. But jobs were scarce back then and I ended up in the school. All the while I kept looking for work in my chosen field.
What an eye opener it was to work there with those teens. Within seconds I realized that these were just teens who sat down. That's it. They were teens in every other aspect, their humour, their need to gossip, their giggles about boys and blushes about girls. While I did the stuff I was paid to do, lift, toilet, fetch and carry - we got to know each other.
Too well. Sometimes I'd be accompanying one of them to class, carrying something for them, and I'd open the door and let it slam in their face as they were wheeling behind me. I just forgot, for a moment, that they weren't walking and needed the door held. They always chided me for my error, threaten to call Children's Aide, it was another point of connection, of laughter.
When I got a job at a "Prevocational Center" I was sad to leave the students but pleased to be on my chosen journey. Now, as a wheelchair user, I'm so glad to have had that time in that classroom. To learn, first hand information that now is a blessing to me.
But what I remember most is that it's possible to forget. Forget disability. To be so wrapped up in something else that disability drops to the lowest rung of awareness.
"I have to remind myself every now and then that Kyle has Down Syndrome," a mother once said to me, I think she was surprised herself at the realization that Kyle wasn't going to be Down Syndrome every second of every day of his entire existance. I'm not sure that I understood her back then when she said it.
But I do now.
Because yesterday lying in bed having my back scratched as I read my book.
I forgot.
Again.
I wonder if that's normal.
Even when I'm in the wheelchair, I forget sometimes.
Years and years ago when I was a mere pup, I worked as a classroom aide with kids who had physical disabilities. I loved the job because the kids were great. There was an abundance of laughter in that room, I took the job because I had wanted to move to Toronto and wanted to work with those with intellectual disabilities. But jobs were scarce back then and I ended up in the school. All the while I kept looking for work in my chosen field.
What an eye opener it was to work there with those teens. Within seconds I realized that these were just teens who sat down. That's it. They were teens in every other aspect, their humour, their need to gossip, their giggles about boys and blushes about girls. While I did the stuff I was paid to do, lift, toilet, fetch and carry - we got to know each other.
Too well. Sometimes I'd be accompanying one of them to class, carrying something for them, and I'd open the door and let it slam in their face as they were wheeling behind me. I just forgot, for a moment, that they weren't walking and needed the door held. They always chided me for my error, threaten to call Children's Aide, it was another point of connection, of laughter.
When I got a job at a "Prevocational Center" I was sad to leave the students but pleased to be on my chosen journey. Now, as a wheelchair user, I'm so glad to have had that time in that classroom. To learn, first hand information that now is a blessing to me.
But what I remember most is that it's possible to forget. Forget disability. To be so wrapped up in something else that disability drops to the lowest rung of awareness.
"I have to remind myself every now and then that Kyle has Down Syndrome," a mother once said to me, I think she was surprised herself at the realization that Kyle wasn't going to be Down Syndrome every second of every day of his entire existance. I'm not sure that I understood her back then when she said it.
But I do now.
Because yesterday lying in bed having my back scratched as I read my book.
I forgot.
Again.
Friday, November 02, 2007
Simple Pleasures
This is going to be a tough blog to write. I want to get it right. I laid in bed thinking about it, probably too much. Here goes:
Yesterday after work, I wanted to go out of the hotel for a bit. My leg is still healing from the infection and the healing is hurting more than the infection did. So the pain is slowing me down a little bit, even so, I couldn't face just sitting in a hotel room. I'd seen an ad in the hotel for a store that specializes in spices from around the world. We love to cook and it seemed the perfect match. We drove around a bit and then found the store in a nondescript plaza. There were hundreds of spices, many I knew and used but more that I didn't. I took the time and picked up all that interested me, smelled at the lids and drank in their flavour.
We left with a bag tucked into my carryall behind the car and then made a stop at the liquour store next door. There's a woman back home, known her for years, who we pick up Long Island Iced Tea for. I slowly navigated through the store, enjoying all the different bottles and colours and the chatter of the clerks on the till. We found what we wanted and, beast of burden I, stuffed it into the bag at the back.
Joe was very aware that I've been fighting both fatigue and pain asked if I wanted him to take me back to the hotel while he went and picked up hot soup for us at the grocery store. I thought for a second, then told him I was having a nice time and didn't want to go back yet. We found a delicious smelling hot soup - lentil chili - and I scooped it out, stopping several times to smell it's fragrence.
On the way out of the store I noticed that the two spindly trees beside the car were filled with hundreds of birds, the racket was incredible. I saw their plump summer fed bodies above me and stopped the chair to watch them hop from branch to branch. Their feathers were the colour of earth, their song was raucous. I know I was sitting there smiling. Joe had loaded stuff into the car and was on his way back to me when a stranger caught his eye, then indicated me and said, "It's nice that he can still enjoy the simple pleasures."
We both looked at him startled and he smiled, a nice smile and then walked on. My first response was to be ticked at that the idea that disability denys me so much but at least I can enjoy the smell of roses on the path. Grrrrr.
But, honestly, I do enjoy these things more than I used to. As a walker, I'd have gone straight by that tree, I'd have whipped in and out of the spice store without smelling half the spices I smelled, I'd have gone into the liquor store and picked up Donna's booze without noticing the incredible bottles, the glint of colour in the green tea vodka.
I hate admitting this. I don't like the gooey view that disability heightens the senses or awareness. Like we've been taken out of the race and simply have to enjoy life from the sidelines.
Like God planted roses so that the cripples will have something pleasant to distract themselves.
So I'm not saying any of that.
But I am saying, it's nice to finally notice and enjoy the simple pleasures.
Yesterday after work, I wanted to go out of the hotel for a bit. My leg is still healing from the infection and the healing is hurting more than the infection did. So the pain is slowing me down a little bit, even so, I couldn't face just sitting in a hotel room. I'd seen an ad in the hotel for a store that specializes in spices from around the world. We love to cook and it seemed the perfect match. We drove around a bit and then found the store in a nondescript plaza. There were hundreds of spices, many I knew and used but more that I didn't. I took the time and picked up all that interested me, smelled at the lids and drank in their flavour.
We left with a bag tucked into my carryall behind the car and then made a stop at the liquour store next door. There's a woman back home, known her for years, who we pick up Long Island Iced Tea for. I slowly navigated through the store, enjoying all the different bottles and colours and the chatter of the clerks on the till. We found what we wanted and, beast of burden I, stuffed it into the bag at the back.
Joe was very aware that I've been fighting both fatigue and pain asked if I wanted him to take me back to the hotel while he went and picked up hot soup for us at the grocery store. I thought for a second, then told him I was having a nice time and didn't want to go back yet. We found a delicious smelling hot soup - lentil chili - and I scooped it out, stopping several times to smell it's fragrence.
On the way out of the store I noticed that the two spindly trees beside the car were filled with hundreds of birds, the racket was incredible. I saw their plump summer fed bodies above me and stopped the chair to watch them hop from branch to branch. Their feathers were the colour of earth, their song was raucous. I know I was sitting there smiling. Joe had loaded stuff into the car and was on his way back to me when a stranger caught his eye, then indicated me and said, "It's nice that he can still enjoy the simple pleasures."
We both looked at him startled and he smiled, a nice smile and then walked on. My first response was to be ticked at that the idea that disability denys me so much but at least I can enjoy the smell of roses on the path. Grrrrr.
But, honestly, I do enjoy these things more than I used to. As a walker, I'd have gone straight by that tree, I'd have whipped in and out of the spice store without smelling half the spices I smelled, I'd have gone into the liquor store and picked up Donna's booze without noticing the incredible bottles, the glint of colour in the green tea vodka.
I hate admitting this. I don't like the gooey view that disability heightens the senses or awareness. Like we've been taken out of the race and simply have to enjoy life from the sidelines.
Like God planted roses so that the cripples will have something pleasant to distract themselves.
So I'm not saying any of that.
But I am saying, it's nice to finally notice and enjoy the simple pleasures.
Thursday, November 01, 2007
It Was Supposed To Be Up Lifting
In order to get to one part of the hotel from another they have one of those elevators made specifically for people with disability. They always look so functional, so out of place, so 'we did this because we had to'. Inwardly I groaned. Most often they don't work, when they do they are slow and sound like the gears were made to grind loudly. I've been stuck in them part way up, partway down, I've had trouble figuring out how the doors work. Do you push up once, or do you hold it - it's a crap shoot. But. They had one.
We didn't need it til morning when we were going for breakfast and Joe had already scoped out that the conference was up in that area too. As we were going across the vast lobby I asked Joe to pop over to the desk to see if there was a key and get whatever info he needed about us using the lift. I got to the lift about time that Joe got to the desk so I turned around to watch.
I could tell by the set of Joe's shoulders that the desk clerk had pissed him off, then too there was the lack of his trademark laugh. He turned to walk back to me and I saw the clerk look over at another staff and shake his head and roll his eyes. What happened, I wondered.
"What was that about?" I asked.
"He was really sarcastic, I asked him about the elevator and he said, slowly like I was stupid, 'You open the door, you push the button.'"
I told Joe about the clerk then rolling his eyes and could see anger simmer in his eyes. We 'opened the door and pushed the button' and the elevator screamed it's way up. When it stopped Joe was waiting and pulled at the door to open it. It didn't open. I went down again, came back up. It didn't open.
"You're going to have to ..."
"I know," he barked.
A few seconds later the maintenance man was sent for. But in the clerk decided to come over and take a look for himself. He grasped hold of the door handle pulled it down and then out. It opened. "You have to pull it down first." We both just stared at him and he left.
He coulda told Joe that when he went over. But instead he chose to be miserable and treat us as if we were simple minded. Couldn't he have guessed that we were asking because we've used a lot of these an they have more personality than many people we know?
We've said it before and likely will say it again.
It's not the disability ... it's the attitude - that's the barrier.
We didn't need it til morning when we were going for breakfast and Joe had already scoped out that the conference was up in that area too. As we were going across the vast lobby I asked Joe to pop over to the desk to see if there was a key and get whatever info he needed about us using the lift. I got to the lift about time that Joe got to the desk so I turned around to watch.
I could tell by the set of Joe's shoulders that the desk clerk had pissed him off, then too there was the lack of his trademark laugh. He turned to walk back to me and I saw the clerk look over at another staff and shake his head and roll his eyes. What happened, I wondered.
"What was that about?" I asked.
"He was really sarcastic, I asked him about the elevator and he said, slowly like I was stupid, 'You open the door, you push the button.'"
I told Joe about the clerk then rolling his eyes and could see anger simmer in his eyes. We 'opened the door and pushed the button' and the elevator screamed it's way up. When it stopped Joe was waiting and pulled at the door to open it. It didn't open. I went down again, came back up. It didn't open.
"You're going to have to ..."
"I know," he barked.
A few seconds later the maintenance man was sent for. But in the clerk decided to come over and take a look for himself. He grasped hold of the door handle pulled it down and then out. It opened. "You have to pull it down first." We both just stared at him and he left.
He coulda told Joe that when he went over. But instead he chose to be miserable and treat us as if we were simple minded. Couldn't he have guessed that we were asking because we've used a lot of these an they have more personality than many people we know?
We've said it before and likely will say it again.
It's not the disability ... it's the attitude - that's the barrier.
Wednesday, October 31, 2007
He Could Have Lied
"I have something funny for you," at break yesterday in Corning a largish woman approached with a big smile on her face, "You know that skinny woman inside me, the one that wants to get out, well I keep that bitch quiet with cookies!" We both roared. It was a nice moment in a day wherein I make the point that a sense of humour keeps us sane in sometimes insane situations. After we were done we were heading up to a place in northen New York that has a name I have never spelled right, Canandagua, I think is the spelling.
Joe had everything in the car and then remembered he had to go back for something. I requested to just sit outside in the sun and fresh air while he was gone. He was cool with that. I took off my wheelchair gloves and instead of tucking them behind me like I usually do, I tucked them into the door handle of the car. The handle was the kind that you reach in and grip, so there was plenty enough room to cram the gloves in.
We got me into the car and Joe into the drivers seat and we were off to the last stop before home. I'm looking forward to home. We hit the freeway and were off. About 3 miles before our turn off, Joe pointed out the car next to us. There were two women in the front seat and a teenaged boy with Down Syndrome in the back seat. The driver was waving at us and the teen with Down Sydrome was looking over at the car and laughing so hard that we could practically hear him.
My ego responded and I said, "She probably recognizes me from one of the lectures here.
Joe gave me that "In your world you are Madonna" smile of his and said, "I don't think so."
Being convinced that he was being warned about a bad tire or something he pulled over to check. They pulled up behind us. The woman on the passenger side got out as got there as Joe discovered that my gloves had been left tucked securely in the hand grip of the back door. But the shape they were in looked like the gloves had bee positioned to give the world the finger. Something I've wanted to do every now and then, but not that day.
I heard them talking and he told me that they'd noticed it because her nephew with Down Syndrome saw it and started laughing. "He still likes that kind of humour," the woman explained, "He's a guy, he'll always like that kind of humour."
After a few seconds, Joe glanced at me and I knew something was coming.
"What?"
"Never heard of Hingsburger."
Joe had everything in the car and then remembered he had to go back for something. I requested to just sit outside in the sun and fresh air while he was gone. He was cool with that. I took off my wheelchair gloves and instead of tucking them behind me like I usually do, I tucked them into the door handle of the car. The handle was the kind that you reach in and grip, so there was plenty enough room to cram the gloves in.
We got me into the car and Joe into the drivers seat and we were off to the last stop before home. I'm looking forward to home. We hit the freeway and were off. About 3 miles before our turn off, Joe pointed out the car next to us. There were two women in the front seat and a teenaged boy with Down Syndrome in the back seat. The driver was waving at us and the teen with Down Sydrome was looking over at the car and laughing so hard that we could practically hear him.
My ego responded and I said, "She probably recognizes me from one of the lectures here.
Joe gave me that "In your world you are Madonna" smile of his and said, "I don't think so."
Being convinced that he was being warned about a bad tire or something he pulled over to check. They pulled up behind us. The woman on the passenger side got out as got there as Joe discovered that my gloves had been left tucked securely in the hand grip of the back door. But the shape they were in looked like the gloves had bee positioned to give the world the finger. Something I've wanted to do every now and then, but not that day.
I heard them talking and he told me that they'd noticed it because her nephew with Down Syndrome saw it and started laughing. "He still likes that kind of humour," the woman explained, "He's a guy, he'll always like that kind of humour."
After a few seconds, Joe glanced at me and I knew something was coming.
"What?"
"Never heard of Hingsburger."
Tuesday, October 30, 2007
Nothing, No One
It was weird. After the presentation here in Corning yesterday, I was tired. But I wanted to go out for a bit and get away from the hotel and the lecture hall. I love presenting in the same hotel as it makes the morning so easy. But by the end of the day, I feel institutionalized and like to get out into real air for a bit.
We drove through downtown Corning, its only a few blocks long but it's pretty. A couple of windows display incredibly glass work and even thought I'm a 'bull in a china shop' kind of guy, I can admire the beautiful fragility of the artwork. From there we went to the grocery store for a wheel around. I found this amazing keg of Root Beer complete with it's own tap - perfect present for the guy who has everything.
The store is well desgined in that it has two wheelchair lanes that are just a little wider and people like me can glide through with ease. We chatted with the nice young woman as we went through the till and suddenly we were back in the hotel. Joe had to go out and do laundry so I had an hour in the hotel on my own.
I couldn't concentrate on the television and didn't feel like surfing the web, so I thought. Something had bothered me about our outing. I hadn't been stared at - excessively anyways. No one said anything either nice or nasty. So it wasn't anything about being disabled in the world. Then it struck me.
I never saw a single guy with an intellectual disability, none with a physical diability.
None bagging groceries. None out with family shopping. None in the cafe attached to the store. None wandering downtown Corning.
Now I know this is pure chance. That I'd gone out during a small window of time where every single person with a disability was off doing something other than being in the world.
But the image of a space free of 'us', free of Down Syndrome and Cerebral Palsy and Spina Bifida and manual chairs and motorized chairs and walkers and canes - chilled me. For a second I saw the world that Hitler wanted, that the gene hunters think as utopia.
It's like a world painted with a pallette that's missing colours.
Who could want that?
We drove through downtown Corning, its only a few blocks long but it's pretty. A couple of windows display incredibly glass work and even thought I'm a 'bull in a china shop' kind of guy, I can admire the beautiful fragility of the artwork. From there we went to the grocery store for a wheel around. I found this amazing keg of Root Beer complete with it's own tap - perfect present for the guy who has everything.
The store is well desgined in that it has two wheelchair lanes that are just a little wider and people like me can glide through with ease. We chatted with the nice young woman as we went through the till and suddenly we were back in the hotel. Joe had to go out and do laundry so I had an hour in the hotel on my own.
I couldn't concentrate on the television and didn't feel like surfing the web, so I thought. Something had bothered me about our outing. I hadn't been stared at - excessively anyways. No one said anything either nice or nasty. So it wasn't anything about being disabled in the world. Then it struck me.
I never saw a single guy with an intellectual disability, none with a physical diability.
None bagging groceries. None out with family shopping. None in the cafe attached to the store. None wandering downtown Corning.
Now I know this is pure chance. That I'd gone out during a small window of time where every single person with a disability was off doing something other than being in the world.
But the image of a space free of 'us', free of Down Syndrome and Cerebral Palsy and Spina Bifida and manual chairs and motorized chairs and walkers and canes - chilled me. For a second I saw the world that Hitler wanted, that the gene hunters think as utopia.
It's like a world painted with a pallette that's missing colours.
Who could want that?
Monday, October 29, 2007
LaZy
My arms were sore, really really sore. We were in a huge Wallmart, it was bigger than Baxter the little town we live in. I pushed myself all over the store. They had Christmas decorations out and I spent a lot of time there, they had winter baby clothes on display so I browsed away, they had a couple of cool ideas for presents for friends and I finished shopping for my family out west. I must have been back and forth across that store three or four times.
I stopped and rested for a bit, just watched people come and go. It was a busy place and people were bustling by. It's not far off Halloween and American Thanksgiving so the store had a three for one set of decorations Hallowgivingmass. It was impossible not to feel festive. For me at least. But then I wasn't dragging a wack of kids behind me, or trundling beside a bored husband, I was there because I wanted to be. So my mood was good.
There were lots of people using the electric wheelchairs provided by the store and I admit to thinking that I should have given in and used one. It was a huge store after all, but I'm pretty adament about getting at least a little bit of exercise. So on the way out I was quite pleased with myself. My arms were tired, I was sweating, shopping as exercise, cool.
Joe left me with the cart and went to get the car which we'd left over by the movie theatre where we'd seen an afternoon movie. It was a long way off so I just settled back to watch people come and go. A couple of well coiffed women, too well coiffed for Wallmart perhaps, walked by and notice me sitting in my chair clearly waiting to be picked up and then another biggish guy getting into an electric cart.
"I think most of these people are just lazy," the auburn said to the blond, loud enough for all to hear.
Then they were in the store.
Lazy?
Lazy?
I just pushed a fat guy, a hugely fat guy, around a store, went where he wanted to go and I'm being called lazy. Like I'm faking being in a chair just to get good parking (though I do like the parking) and a push through the store. But wait, I'm pushing me! Where is the lazy there?
I wanted to yell - "Get back here ... I've just thought of the perfect thing to say."
Joe got out of the car with a big grin, looking like he was loving the day.
I kept my mouth shut, refused to bring negativity into his day.
For two days now, I've fought down the nastiness. I decided it would be my blog on Monday, gata go back to work on Monday. But I made it two days ... that's not lazy, that's heroic
I stopped and rested for a bit, just watched people come and go. It was a busy place and people were bustling by. It's not far off Halloween and American Thanksgiving so the store had a three for one set of decorations Hallowgivingmass. It was impossible not to feel festive. For me at least. But then I wasn't dragging a wack of kids behind me, or trundling beside a bored husband, I was there because I wanted to be. So my mood was good.
There were lots of people using the electric wheelchairs provided by the store and I admit to thinking that I should have given in and used one. It was a huge store after all, but I'm pretty adament about getting at least a little bit of exercise. So on the way out I was quite pleased with myself. My arms were tired, I was sweating, shopping as exercise, cool.
Joe left me with the cart and went to get the car which we'd left over by the movie theatre where we'd seen an afternoon movie. It was a long way off so I just settled back to watch people come and go. A couple of well coiffed women, too well coiffed for Wallmart perhaps, walked by and notice me sitting in my chair clearly waiting to be picked up and then another biggish guy getting into an electric cart.
"I think most of these people are just lazy," the auburn said to the blond, loud enough for all to hear.
Then they were in the store.
Lazy?
Lazy?
I just pushed a fat guy, a hugely fat guy, around a store, went where he wanted to go and I'm being called lazy. Like I'm faking being in a chair just to get good parking (though I do like the parking) and a push through the store. But wait, I'm pushing me! Where is the lazy there?
I wanted to yell - "Get back here ... I've just thought of the perfect thing to say."
Joe got out of the car with a big grin, looking like he was loving the day.
I kept my mouth shut, refused to bring negativity into his day.
For two days now, I've fought down the nastiness. I decided it would be my blog on Monday, gata go back to work on Monday. But I made it two days ... that's not lazy, that's heroic
Sunday, October 28, 2007
To Think
I thought she was going to break into tears. She was standing in front of the display of teas in the grocery store. I'd come to see if they had a particular brand of green tea that I like but I couldn't get by her to check. For a tiny, little woman she took up a lot of space. "All I want is some tea," she said to no one.
"Can I help?" I asked.
She turned, startled. I don't think she realized she was speaking out loud. Then seeing me she simply said, "All I want is some tea, they've got so many different kinds, I just want some tea." I understood immediately how she was feeling. I'm not yet 55 but I'm already finding that the world changes too quickly, that there are too many choices, that it's work to keep up. I pointed at a box of Lipton tea on the bottom shelf, "There is a box of regular black tea for you." She glanced down and said, "No, I don't want that kind I want tea bags."
Rounding the corner came a man of about 30, with Down Syndrome saying, "Have you got the tea Grandma?" He was bustling up to her with a smile. "I can't find my tea," she said simply to him. He looked over at me and winked, I could tell this has happened before. He pointed at the same box of tea that I had pointed to and she began to protest. "They've just changed the picture Gran, it's the same tea you always have."
"Thankyou," she said relieved and picked up the tea, "You're a good boy."
"I'm a man, Grandma," he said with a smile in his voice, "you know I don't like being called a boy."
She looked at me and smiled, "And to think I cried when he was borne."
"Can I help?" I asked.
She turned, startled. I don't think she realized she was speaking out loud. Then seeing me she simply said, "All I want is some tea, they've got so many different kinds, I just want some tea." I understood immediately how she was feeling. I'm not yet 55 but I'm already finding that the world changes too quickly, that there are too many choices, that it's work to keep up. I pointed at a box of Lipton tea on the bottom shelf, "There is a box of regular black tea for you." She glanced down and said, "No, I don't want that kind I want tea bags."
Rounding the corner came a man of about 30, with Down Syndrome saying, "Have you got the tea Grandma?" He was bustling up to her with a smile. "I can't find my tea," she said simply to him. He looked over at me and winked, I could tell this has happened before. He pointed at the same box of tea that I had pointed to and she began to protest. "They've just changed the picture Gran, it's the same tea you always have."
"Thankyou," she said relieved and picked up the tea, "You're a good boy."
"I'm a man, Grandma," he said with a smile in his voice, "you know I don't like being called a boy."
She looked at me and smiled, "And to think I cried when he was borne."
Saturday, October 27, 2007
Guilt
It came buried in an email. Just a short mention that her present disability, the constant pain she feels, is a result of the abuse she suffered at the hands of her father as a child. I feel a grip at my throat. Guilt.
I didn't know.
She is my oldest niece. We have a long history together, lots of shared stories. My favourite was when she was a little girl trying to figure out relationships. She knew that Joe was her uncle and that I lived with Joe. So she did the arithmetic and when seeing me in the store where my mother worked she ran pell mell through the aisles yelling, "It's Auntie Dave, it's Auntie Dave!" She still calls me that.
I didn't know.
Her father was a real piece of work. He began an angry drunk and turned into a vicious Christian. He converted, I think, primarily because he found a way to channel his anger. He never spoke of God's love, he only spoke of God's vengence. He loved knowing with the certainty of a zealot that God loved him - but hated the rest of us. His eye looked at everyone through righteousness and his judgements lashed out and were used to hurt and harm.
I should have guessed.
But.
I didn't know.
His little girl grew up, in spite of him, loving the two of us. She did from the start. I remember once being left to babysit for a couple of hours, and babysit is the right term. She was still in diapers. I was still in my teens (Joe and I began our relationship at 16) and I had been promised that she was freshly changed so would be fine until they returned. About 20 minutes in she was soaked and looking at me like ... ok ... a new diaper please. This was in the days of cloth diapers. Well, I got her dried off and then tried to figure out how to fold a diaper. No matter what I did, I couldn't get her wrapped up properly. When Mom came home I was still trying to get her into that damn diaper.
I didn't know.
When she graduated her wish was to come and visit us in Toronto along with Grandma. We had a spectacular time. She proudly told everyone we met about how she was our niece. Other family members have 'come around' but she always simply saw us for what we were, without question. Family.
I really didn't know.
She told me one day when we were sitting together in a car. The others had gone for a walk, she and I decided to stay back and talk. Then it poured out. I sat there stunned. Her father had been unspeakable in his violence to her. His anger at the world spilled over and he struck her and struck her and struck her again. She didn't bow to him. She was defiant in the face of his anger. Possibly a bad choice, but it's who she is. And I love who she is.
Until that moment.
I didn't know.
Now she's writing to tell us that the doctor believes that her growing disability is a result of child abuse. I know that abuse is the number one cause of disability. I know that I've been working for years to bring an end to the violence experienced by those with disabilities. I feel like I've cared more for others than I did for her.
I didn't know.
I didn't know.
She is my oldest niece. We have a long history together, lots of shared stories. My favourite was when she was a little girl trying to figure out relationships. She knew that Joe was her uncle and that I lived with Joe. So she did the arithmetic and when seeing me in the store where my mother worked she ran pell mell through the aisles yelling, "It's Auntie Dave, it's Auntie Dave!" She still calls me that.
I didn't know.
Her father was a real piece of work. He began an angry drunk and turned into a vicious Christian. He converted, I think, primarily because he found a way to channel his anger. He never spoke of God's love, he only spoke of God's vengence. He loved knowing with the certainty of a zealot that God loved him - but hated the rest of us. His eye looked at everyone through righteousness and his judgements lashed out and were used to hurt and harm.
I should have guessed.
But.
I didn't know.
His little girl grew up, in spite of him, loving the two of us. She did from the start. I remember once being left to babysit for a couple of hours, and babysit is the right term. She was still in diapers. I was still in my teens (Joe and I began our relationship at 16) and I had been promised that she was freshly changed so would be fine until they returned. About 20 minutes in she was soaked and looking at me like ... ok ... a new diaper please. This was in the days of cloth diapers. Well, I got her dried off and then tried to figure out how to fold a diaper. No matter what I did, I couldn't get her wrapped up properly. When Mom came home I was still trying to get her into that damn diaper.
I didn't know.
When she graduated her wish was to come and visit us in Toronto along with Grandma. We had a spectacular time. She proudly told everyone we met about how she was our niece. Other family members have 'come around' but she always simply saw us for what we were, without question. Family.
I really didn't know.
She told me one day when we were sitting together in a car. The others had gone for a walk, she and I decided to stay back and talk. Then it poured out. I sat there stunned. Her father had been unspeakable in his violence to her. His anger at the world spilled over and he struck her and struck her and struck her again. She didn't bow to him. She was defiant in the face of his anger. Possibly a bad choice, but it's who she is. And I love who she is.
Until that moment.
I didn't know.
Now she's writing to tell us that the doctor believes that her growing disability is a result of child abuse. I know that abuse is the number one cause of disability. I know that I've been working for years to bring an end to the violence experienced by those with disabilities. I feel like I've cared more for others than I did for her.
I didn't know.
Friday, October 26, 2007
Scotty's Mom
I've thought about it for days now. I was talking to this guy, Scotty, and he was telling me that his mother is having a really difficult time - dealing with depression after having a stroke. She has a great deal of difficulty walking and is refusing to use a wheelchair. As a result she is now virtually a prisoner in her home. It's a difficult situation for everyone. Scotty, a guy I know through odd circumstance is commenting on how positive I am about being disabled and how well I've adapted to the wheelchair. "Maybe you should talk to my mom," he said, only half joking. I sputtered something like, 'any time.'
I don't know Scotty well, I don't think he'd ever call and really ask me to talk to his mom. But the situation has been in my mind and in my heart ever since we spoke. The love he has for his mother is plain in the tone of his voice and in the deep respect he shows in choosing his words to speak of her and her situation. He understands the frustration she feels. He watches his father lovingly care for her and wonders how this man, his dad, deals with the depression and the need.
It's a tragic situation made tragic, not by the presence of disability, by the fear of appearing disabled. By the fear of loss of status. I was in Target here in Binghamton yesterday and I was wheeling around a corner. An elderly man and I almost collided as neither saw the other. He apologized and so did I. As he walked away he said to himself, obviously not realizing I could hear him, "At least I didn't end up like that." It was then I notice that he had a slight limp and a stroke had curled up one of his hands.
He was giving thanks that he stayed on the other side of the line. Crossing over to disability was like a social death. Like he'd have stopped being him and become something different, something other. How odd to think that sitting down rolling is so much different that standing up walking. We both get around. I know he didn't mean offence and would have been shocked to know I heard him.
Sugar tastes as sweet in my mouth as it does in his.
But that doesn't matter.
Scotty's mom's disability isn't one of mobility, it's one of selective blindness. She has lost sight of the fact that she is deeply and desperately loved. That she has an attentive son in a world when many children no longer speak to their parents. That she has a loving husband in a world where many end up alone. That she still has choices and the power to make them in a world where many are placed in homes under the will of others. Scotty's mom needs to notice that food still tastes as good, that the air still smells as fresh and that the morning light still shines in the kitchen window.
The world has not changed.
And neither really has she.
Except.
Now she knows, for sure, what will happen when the 'worst' happens.
She will still be loved.
I don't know Scotty well, I don't think he'd ever call and really ask me to talk to his mom. But the situation has been in my mind and in my heart ever since we spoke. The love he has for his mother is plain in the tone of his voice and in the deep respect he shows in choosing his words to speak of her and her situation. He understands the frustration she feels. He watches his father lovingly care for her and wonders how this man, his dad, deals with the depression and the need.
It's a tragic situation made tragic, not by the presence of disability, by the fear of appearing disabled. By the fear of loss of status. I was in Target here in Binghamton yesterday and I was wheeling around a corner. An elderly man and I almost collided as neither saw the other. He apologized and so did I. As he walked away he said to himself, obviously not realizing I could hear him, "At least I didn't end up like that." It was then I notice that he had a slight limp and a stroke had curled up one of his hands.
He was giving thanks that he stayed on the other side of the line. Crossing over to disability was like a social death. Like he'd have stopped being him and become something different, something other. How odd to think that sitting down rolling is so much different that standing up walking. We both get around. I know he didn't mean offence and would have been shocked to know I heard him.
Sugar tastes as sweet in my mouth as it does in his.
But that doesn't matter.
Scotty's mom's disability isn't one of mobility, it's one of selective blindness. She has lost sight of the fact that she is deeply and desperately loved. That she has an attentive son in a world when many children no longer speak to their parents. That she has a loving husband in a world where many end up alone. That she still has choices and the power to make them in a world where many are placed in homes under the will of others. Scotty's mom needs to notice that food still tastes as good, that the air still smells as fresh and that the morning light still shines in the kitchen window.
The world has not changed.
And neither really has she.
Except.
Now she knows, for sure, what will happen when the 'worst' happens.
She will still be loved.
Thursday, October 25, 2007
The Face
"You need to get the face," she said.
We were talking at the break in the lecture day and she'd approached me sitting quietly at the lecture table. Often people come with questions and while I normally don't mind, I was tired and therefore pleased that she'd just come to chat.
"The face?"
"Yes, the face," she said. "When you were telling about that guy who came to talk to you about 'the cosmos' and 'positive vibrations' and 'being healed' I realized that you probably had never been told about The Face."
"OK, I'm curious, what's The Face?"
"I'm a member of a parents group, we've all got kids with Down Syndrome. A couple of years ago we started talking about 'the face'. We each discovered that we'd learned to put on 'the face' when we went out with our kids. It's a face that says 'I love my kid. I'm out with my kid. Don't you dare mess with me and my kid.' We've all discovered that you've got to have 'the face' if you are going to stay sane.'
I asked her to show me the face. She laughed and said ok, she turned around away from me and then turned back. She was definately wearing 'the face'. It was fearsome, it was proud and it was defiant. Then her face dissolved into laughter and then she demanded that I try. So I did. She laughed and said, 'No, that's just an angry face, you'll get people saying, 'you all right bud?' I laughed and told her that people do say that to me all the time. The break flew by as we just chatted and I tried on different faces, never quite getting it.
I've got the day off today and we're going to the movies and to the mall, I'm going to try 'The Face' and see if I can get it right. And I'm going to watch for other parents of kids with disabilities and see if they wear 'the face'.
I'm curious, if you are reading this and have a kid with a disability - do you wear 'the face'? If you have a disability or go out with those with disabilities, do you wear 'the face'?
What a great idea. There should be a handbook given out to those in the disability world ... How To Get The Face.
We were talking at the break in the lecture day and she'd approached me sitting quietly at the lecture table. Often people come with questions and while I normally don't mind, I was tired and therefore pleased that she'd just come to chat.
"The face?"
"Yes, the face," she said. "When you were telling about that guy who came to talk to you about 'the cosmos' and 'positive vibrations' and 'being healed' I realized that you probably had never been told about The Face."
"OK, I'm curious, what's The Face?"
"I'm a member of a parents group, we've all got kids with Down Syndrome. A couple of years ago we started talking about 'the face'. We each discovered that we'd learned to put on 'the face' when we went out with our kids. It's a face that says 'I love my kid. I'm out with my kid. Don't you dare mess with me and my kid.' We've all discovered that you've got to have 'the face' if you are going to stay sane.'
I asked her to show me the face. She laughed and said ok, she turned around away from me and then turned back. She was definately wearing 'the face'. It was fearsome, it was proud and it was defiant. Then her face dissolved into laughter and then she demanded that I try. So I did. She laughed and said, 'No, that's just an angry face, you'll get people saying, 'you all right bud?' I laughed and told her that people do say that to me all the time. The break flew by as we just chatted and I tried on different faces, never quite getting it.
I've got the day off today and we're going to the movies and to the mall, I'm going to try 'The Face' and see if I can get it right. And I'm going to watch for other parents of kids with disabilities and see if they wear 'the face'.
I'm curious, if you are reading this and have a kid with a disability - do you wear 'the face'? If you have a disability or go out with those with disabilities, do you wear 'the face'?
What a great idea. There should be a handbook given out to those in the disability world ... How To Get The Face.
Wednesday, October 24, 2007
Bust a Gut
I am not a loser.
You are going to hate me for telling you this, but I am the inventor of the 'Loser Test'. Years ago in Toronto there used to be a multiplex theatre in the Eaton Center down town. At least a couple times a month 8 of us would get together and go to a movie and then out for a beer. One day there was a group of proselytisers in orange robes banging drums and approaching people to 'talk'.
Inspired, I came up with the 'Loser Test' we'd all walk by, one at a time, and the one's they approached to talk to would officially be labeled 'losers'. I had to go first, it was my game, and I walked by trying to look just like the kind of person you wouldn't approach and they didn't. Joe came next, not stopped. Everyone got by but Robert who, when approached, yelled out loudly, "No! No! I am NOT a loser!!" We laughed ourselves silly.
We played the game every time that we went to that theatre with whatever group was there in hunt of souls. We loved it. Robert was never chosen again, but he never lived down being the first one to lose the loser game.
I felt like I'd lost the game yesterday. After the presentation here in Greenbelt, we went shopping to a small mall nearby because I wanted to pick up a few small gifts for Joe. I'd already got him the bulk of his birthday presents but there were a few ideas I had for little things. To do that I'd need to be on my own for a bit and I'd need a wee bit more help from the store clerks. Everything went fine.
Then I went and parked at a bench and waited for Joe, our meet time was only about 7 minutes away. I was only there for minutes when a guy sat down next to me. He was about 25 or 26 and had one of those ponytails that men wear - the kind that looks like you've got to pull hard to start their brain lawn mower style. He launches into a long speil about how he can get me out of the wheelchair.
Oh, no.
I was informed that I was thinking toxic thoughts. Wow, this guy is good, that's exactly what I was doing. He told me that if I thought positive thoughts, the cosmos would send me positive vibrations. How much weed do you have to smoke in order to talk like that, I thought. Once again I realize how my wheelchair is a magnet for odd ducks. I didn't want a confrontation, at first.
Then I thought about what he was saying, he was saying that people with disabilities are negative people who get what they deserve. What crap! What new age nonesense.
"Sir, shut up."
"No need to be rude."
"You come up to a perfect stranger and start telling him that he has a disability because he's a negative person with negative thoughts - and you don't even know the guy you're talking to ... and you call me rude."
"I don't need to know you, I know the cosmos."
"I repeat, shut up."
"See you are negative, you need to embrace ..."
"Today, I went shopping for birthday presents, I have a bag full behind me. Today, I gave a lecture on sexuality to a bunch of folks wanting to provide better service. Today, I got a call from a friend I haven't heard from in ages. I've had a wonderful positive day. You come into my positive world with prejudice and with bigotted ideas about disability - let me tell you, sir, the cosmos is really pissed at you right now."
"Well, if you are going to be like that ... you'll always be in a chair."
"Who says I want to be out of the chair?"
He shook his head sadly and left.
Joe appeared from no where and asked, "Who was the guy with the rat tail."
And I positively bust a gut.
You are going to hate me for telling you this, but I am the inventor of the 'Loser Test'. Years ago in Toronto there used to be a multiplex theatre in the Eaton Center down town. At least a couple times a month 8 of us would get together and go to a movie and then out for a beer. One day there was a group of proselytisers in orange robes banging drums and approaching people to 'talk'.
Inspired, I came up with the 'Loser Test' we'd all walk by, one at a time, and the one's they approached to talk to would officially be labeled 'losers'. I had to go first, it was my game, and I walked by trying to look just like the kind of person you wouldn't approach and they didn't. Joe came next, not stopped. Everyone got by but Robert who, when approached, yelled out loudly, "No! No! I am NOT a loser!!" We laughed ourselves silly.
We played the game every time that we went to that theatre with whatever group was there in hunt of souls. We loved it. Robert was never chosen again, but he never lived down being the first one to lose the loser game.
I felt like I'd lost the game yesterday. After the presentation here in Greenbelt, we went shopping to a small mall nearby because I wanted to pick up a few small gifts for Joe. I'd already got him the bulk of his birthday presents but there were a few ideas I had for little things. To do that I'd need to be on my own for a bit and I'd need a wee bit more help from the store clerks. Everything went fine.
Then I went and parked at a bench and waited for Joe, our meet time was only about 7 minutes away. I was only there for minutes when a guy sat down next to me. He was about 25 or 26 and had one of those ponytails that men wear - the kind that looks like you've got to pull hard to start their brain lawn mower style. He launches into a long speil about how he can get me out of the wheelchair.
Oh, no.
I was informed that I was thinking toxic thoughts. Wow, this guy is good, that's exactly what I was doing. He told me that if I thought positive thoughts, the cosmos would send me positive vibrations. How much weed do you have to smoke in order to talk like that, I thought. Once again I realize how my wheelchair is a magnet for odd ducks. I didn't want a confrontation, at first.
Then I thought about what he was saying, he was saying that people with disabilities are negative people who get what they deserve. What crap! What new age nonesense.
"Sir, shut up."
"No need to be rude."
"You come up to a perfect stranger and start telling him that he has a disability because he's a negative person with negative thoughts - and you don't even know the guy you're talking to ... and you call me rude."
"I don't need to know you, I know the cosmos."
"I repeat, shut up."
"See you are negative, you need to embrace ..."
"Today, I went shopping for birthday presents, I have a bag full behind me. Today, I gave a lecture on sexuality to a bunch of folks wanting to provide better service. Today, I got a call from a friend I haven't heard from in ages. I've had a wonderful positive day. You come into my positive world with prejudice and with bigotted ideas about disability - let me tell you, sir, the cosmos is really pissed at you right now."
"Well, if you are going to be like that ... you'll always be in a chair."
"Who says I want to be out of the chair?"
He shook his head sadly and left.
Joe appeared from no where and asked, "Who was the guy with the rat tail."
And I positively bust a gut.
Tuesday, October 23, 2007
HBTJ
Right now Joe is watching the television programme, "Two and a Half Men" and laughing himself silly. Joe laughs at everything. All of our friends say that Joe makes them feel funny because even the lamest joke gets him going. And it's real. After travelling with me and listening to me lecture for several years, he still sits in the back of the room at the book table laughing at stories he's heard a thousand times.
He's a really good audience.
We've just driven for over six hours to get to the hotel. I still have my driver's licence but I very seldom drive anymore. OK. I don't drive anymore. So while I map the trip and get us where we are going, Joe's got to be the one to get us there. I'd like to spell him off every now and then but we both know that the travel is really up to him now.
He's a really good driver.
Right now I'm in my wheelchair typing this blog. Since I've become disabled, Joe has had to haul the chair in and out of the car and get me from place to place. He does this without any complaint and doesn't make me feel bad about the extra work. Over the years we've supported each other to greater and lesser degrees - right now, he's got the lion's share of the physical work.
He's a really good sport.
Part of me worried when I became disabled that the nature of our relationship would fundamentally shift and that Joe's new role in assisting me would do some damage to the rest of our relationship. I, thankfully, worried needlessly. So, you are wondering why is this post strictly about Joe?
He's a year older today.
Happy Birthday Joe.
He's a really good audience.
We've just driven for over six hours to get to the hotel. I still have my driver's licence but I very seldom drive anymore. OK. I don't drive anymore. So while I map the trip and get us where we are going, Joe's got to be the one to get us there. I'd like to spell him off every now and then but we both know that the travel is really up to him now.
He's a really good driver.
Right now I'm in my wheelchair typing this blog. Since I've become disabled, Joe has had to haul the chair in and out of the car and get me from place to place. He does this without any complaint and doesn't make me feel bad about the extra work. Over the years we've supported each other to greater and lesser degrees - right now, he's got the lion's share of the physical work.
He's a really good sport.
Part of me worried when I became disabled that the nature of our relationship would fundamentally shift and that Joe's new role in assisting me would do some damage to the rest of our relationship. I, thankfully, worried needlessly. So, you are wondering why is this post strictly about Joe?
He's a year older today.
Happy Birthday Joe.
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