Life is full of difficult decisions and often one is left wondering about the choices made. My day today has been a difficult one. On Saturday I really wanted to attend the funeral of a woman who I both liked and admired. We knew each other for years, saw each other seldomly, admired each other liberally. I had heard a rumour that she was unwell but even so the email that arrived telling me that Mimma had died took me by surprise.
I remember her when we were both pups, starting out. She went on to take the helm of an agency in Toronto. She called me one day, out of the blue, shortly after becoming the executive director to tell me about a evening of theatre being put on by people with disabilities from the Meta Centre. I told her how thrilled I was with the idea and I remember a wonderful evening. What impressed me about that night was the fact that the performers with disabilities were clearly fully involved in the writing and the performance. One skit, about teasing and bullying, about the love of family, has stayed with me to this very day.
Too, Mimma called me to do some training for her and we had a wonderful day with wonderful staff. She had a passion for what she did that gave her both direction and vision. Whenever we saw each other, I always saw the girl she was all those years ago. That 'kid' was who I picture now in my mind.
So I wanted to go and mourn. To say goodbye. But I had made a committment to do a session for parents. I could have cancelled. I admit it. I could have asked them to reshedule it. I know they'd have understood. But I simply felt that I needed to follow through. So I did. As it turned out I think the meeting with parents had been a valuable one. But once the glow of that wore off, a quiet regret started to grow in me.
And then all day Sunday. My one day off. I couldn't shake the sense of unshared mourning. I couldn't shake the sense that I'd let her down. That I should have been there. I should have gone and said goodbye. I don't know if I made the right decision. I don't know what to do with the grief I have felt all day.
Fare Thee Well Mimma.
I think I did what you would have done.
Forgive me if I got it wrong.
Monday, August 31, 2009
Sunday, August 30, 2009
Snoozing
I fell asleep in the car on the way home.
Just nodded right off.
We only met for an hour, but it was a pretty intense hour. After doing the workshop for teens and young adults on boundaries and abuse prevention on Friday, an hour was made available on Saturday for parents to come in and discuss those issues. Joe and I arrived about 20 minutes before start time and were greeted by agency staff. No one was there. Only minutes before we were set to begin, we were still sitting alone in the large board room where the meeting was to happen. Then, suddenly, we heard the bing, bing, bing sounds as the front door openned and closed several times.
In all four parents and one care provider came. Less than we'd hope for but more than enough to work with. I openned with a short ten minute talk on the framework for what we had taught on Friday and then openned it up for questions. And questions came.
We had frank discussions regarding sexuality, abuse, bullying and teasing, hopes for the future, fears of the future. It was the right mix because there seemed to be a desire to ask questions bluntly and to get answers without bullshit. I felt that I was being asked to be entirely honest in my answers, that no feelings were to be spared. It was a meeting without hidden agendas, without politics, without need for bafflegab.
It struck me afterwards just how much those parents must love their kids, how much they must worry. They came on a Saturday. They came prepared to ask hard questions. They came ready to listen. They came with their 'bullshit detector' turned on the highest sensitivity.
I wonder how often parents get the chance to talk freely and honestly simply seek advice. I wonder how often we fail them by being less than honest, less than frank.
I think that the thing I've really learned from teaching people with disabilities is that if someone is brave enough to ask a question, the are ready to hear the answer.
But honesty takes energy. Lots and lots of energy.
So, I slept in the car on the way home.
Just nodded right off.
We only met for an hour, but it was a pretty intense hour. After doing the workshop for teens and young adults on boundaries and abuse prevention on Friday, an hour was made available on Saturday for parents to come in and discuss those issues. Joe and I arrived about 20 minutes before start time and were greeted by agency staff. No one was there. Only minutes before we were set to begin, we were still sitting alone in the large board room where the meeting was to happen. Then, suddenly, we heard the bing, bing, bing sounds as the front door openned and closed several times.
In all four parents and one care provider came. Less than we'd hope for but more than enough to work with. I openned with a short ten minute talk on the framework for what we had taught on Friday and then openned it up for questions. And questions came.
We had frank discussions regarding sexuality, abuse, bullying and teasing, hopes for the future, fears of the future. It was the right mix because there seemed to be a desire to ask questions bluntly and to get answers without bullshit. I felt that I was being asked to be entirely honest in my answers, that no feelings were to be spared. It was a meeting without hidden agendas, without politics, without need for bafflegab.
It struck me afterwards just how much those parents must love their kids, how much they must worry. They came on a Saturday. They came prepared to ask hard questions. They came ready to listen. They came with their 'bullshit detector' turned on the highest sensitivity.
I wonder how often parents get the chance to talk freely and honestly simply seek advice. I wonder how often we fail them by being less than honest, less than frank.
I think that the thing I've really learned from teaching people with disabilities is that if someone is brave enough to ask a question, the are ready to hear the answer.
But honesty takes energy. Lots and lots of energy.
So, I slept in the car on the way home.
Saturday, August 29, 2009
:(
Not a small man, he tried to take up little space. He did nothing to draw attention to himself. He looked out at the world from frightened eyes. This was not shyness. This was fear. He was encouraged often to participate. He chose not to, saying no in a teeny, tiny, little voice. A voice that was born in the winds of whisper. He smiled as he watched the others participate. He laughed, silently, when silly things happened. He was there without being there. Existing without ever becoming real.
It was during the only part of the day that was discussion, not instruction. We talked about each of the emotions. Glad. Almost every one there put their hand up and named things that made them happy. He nodded in agreement. His shoulders had relaxed and, though he didn't participate, he was, in his way, there. I knew nothing of the individual members of the group. All I knew was that they had signed up to take a boundaries class. They were all in their late teens or early twenties. They were all, with a noticable exception, pretty typical for their age.
The feelings discussion continued. We did Sad. We did Mad. We were on scared. Others were calling out movies that they though frightening. The list of real life terrors were called out and you could tick off the list of common fears, snakes, spiders, thunder, lightening. Then I noticed his lips move. No sound came out. But the lips moved.
I took a chance and drew attention to him. 'I didn't hear what you said.' He looked at me startled. Not realizing I had seen him. Maybe not even realizing that he had spoken. He swallowed. And swallowed again. Then he spoke. In a tiny, little, voice, 'When they tease me, when they bully me, I am very afraid.' The room was still. Something real had just happened. For a moment others were entirely silent. They all slowly nodded. Time once again caught traction with the earth and moved on.
The others teaching with me and I all caught each others eyes. If the students could have heard, they would have heard the sound of our hearts breaking.
I feel so powerless at these moments.
I feel so inadequate in the face of the enormity of human cruelty.
We all agreed that teasing and bullying hurt. We all agreed that it was wrong for people to hurl words at someone because of difference. He seemed to appreciate being affirmed. In fact he came up and did one of the role plays. Just one. But one.
I do not have a hopeful end to this story. Even so, I wanted to tell you. I wanted you all to know what happened and what he said. It did something to the inside of me. Something that I hope will lead to change.
And right now I'd say, any change is good.
It was during the only part of the day that was discussion, not instruction. We talked about each of the emotions. Glad. Almost every one there put their hand up and named things that made them happy. He nodded in agreement. His shoulders had relaxed and, though he didn't participate, he was, in his way, there. I knew nothing of the individual members of the group. All I knew was that they had signed up to take a boundaries class. They were all in their late teens or early twenties. They were all, with a noticable exception, pretty typical for their age.
The feelings discussion continued. We did Sad. We did Mad. We were on scared. Others were calling out movies that they though frightening. The list of real life terrors were called out and you could tick off the list of common fears, snakes, spiders, thunder, lightening. Then I noticed his lips move. No sound came out. But the lips moved.
I took a chance and drew attention to him. 'I didn't hear what you said.' He looked at me startled. Not realizing I had seen him. Maybe not even realizing that he had spoken. He swallowed. And swallowed again. Then he spoke. In a tiny, little, voice, 'When they tease me, when they bully me, I am very afraid.' The room was still. Something real had just happened. For a moment others were entirely silent. They all slowly nodded. Time once again caught traction with the earth and moved on.
The others teaching with me and I all caught each others eyes. If the students could have heard, they would have heard the sound of our hearts breaking.
I feel so powerless at these moments.
I feel so inadequate in the face of the enormity of human cruelty.
We all agreed that teasing and bullying hurt. We all agreed that it was wrong for people to hurl words at someone because of difference. He seemed to appreciate being affirmed. In fact he came up and did one of the role plays. Just one. But one.
I do not have a hopeful end to this story. Even so, I wanted to tell you. I wanted you all to know what happened and what he said. It did something to the inside of me. Something that I hope will lead to change.
And right now I'd say, any change is good.
Friday, August 28, 2009
Ah, Well ...
I have sat here for half an hour now, completely uninspired and completely at a loss for a blog to write today. I mean I did stuff today. I went to work. I had meetings. I made plans. I helped design a curriculum for teaching boundaries. I had conversations. I rode in buses and cars.
And in all that, there is nothing much to say. Or if there is something to say it would take way more than a blog.
I feel like I've come in the door this morning and you, the reader, are saying, 'How was your day?'
Confused with how to answer I grunt a teenaged grunt and run up the stairs.
Except, I'm in a wheelchair and can't run up the stairs.
So I try to slink by you ... hoping you won't notice that this is a blog about not having a blog to write ... hoping to lull you into thinking that it was worth dropping in today ...
Cause later today I'm doing a boundaries group for teens with disabilities. Saturday I'm doing a boundaries group for parents of teens with disabilities. So I've got lots of stories comin up.
But not right now.
Sorry.
And in all that, there is nothing much to say. Or if there is something to say it would take way more than a blog.
I feel like I've come in the door this morning and you, the reader, are saying, 'How was your day?'
Confused with how to answer I grunt a teenaged grunt and run up the stairs.
Except, I'm in a wheelchair and can't run up the stairs.
So I try to slink by you ... hoping you won't notice that this is a blog about not having a blog to write ... hoping to lull you into thinking that it was worth dropping in today ...
Cause later today I'm doing a boundaries group for teens with disabilities. Saturday I'm doing a boundaries group for parents of teens with disabilities. So I've got lots of stories comin up.
But not right now.
Sorry.
Thursday, August 27, 2009
Am I Blue
I can't believe I forgot to write about this!!!
That tells you how busy we were over the last week or so!!!!
I'm really enjoying using my exclamation mark today!!!
We noticed early, in the line up at the airport in Toronto, actually. We saw someone tucking his blue badge, for parking in disabled bays, away in his suitcase. Joe looked at me, sickened. 'I forgot to pack the badge,' he said. I said, 'It'll be OK,' actually thinking it would be. Upon arrival in Dublin, Joe went off to pick up the rental car and came to pick me up. From that moment forward that bloody parking pass became a big freaking deal.
I didn't realize how much we both used and needed the blue badge. We need wide open doors because of the wheelchair and because I'm a wide open person. How do regular people get out of their cars? In the regular parking spaces there is simply no room to maneouver.
Everywhere we went there were lovely, empty, parking spaces for those with both disabilities and blue badges. I had the disability, didn't have the blue badge. Poor Joe would often have to off load me, then go park the car and walk five miles back to where I would be sitting waiting. I shouldn't say it but his legs trimmed up nicely and he now can turn heads in a pair of short pants.
In SEVERAL instances we decided NOT to do something because the parking made things inaccessible. So for anyone who thinks that those parking bays for disabled people aren't necessary, let me tell you they are. I didn't like having restricted choices because of restricted access. I didn't like deciding to go back to the hotel rather than to go into somewhere new - just because we couldn't manage the wheelchair, me, and the car all at the same time.
So we're home. We have our blue badge again. I wanted to immediately go out and park somewhere. Hmmm. That's kind of how our relationship began in the first place!!!!
That tells you how busy we were over the last week or so!!!!
I'm really enjoying using my exclamation mark today!!!
We noticed early, in the line up at the airport in Toronto, actually. We saw someone tucking his blue badge, for parking in disabled bays, away in his suitcase. Joe looked at me, sickened. 'I forgot to pack the badge,' he said. I said, 'It'll be OK,' actually thinking it would be. Upon arrival in Dublin, Joe went off to pick up the rental car and came to pick me up. From that moment forward that bloody parking pass became a big freaking deal.
I didn't realize how much we both used and needed the blue badge. We need wide open doors because of the wheelchair and because I'm a wide open person. How do regular people get out of their cars? In the regular parking spaces there is simply no room to maneouver.
Everywhere we went there were lovely, empty, parking spaces for those with both disabilities and blue badges. I had the disability, didn't have the blue badge. Poor Joe would often have to off load me, then go park the car and walk five miles back to where I would be sitting waiting. I shouldn't say it but his legs trimmed up nicely and he now can turn heads in a pair of short pants.
In SEVERAL instances we decided NOT to do something because the parking made things inaccessible. So for anyone who thinks that those parking bays for disabled people aren't necessary, let me tell you they are. I didn't like having restricted choices because of restricted access. I didn't like deciding to go back to the hotel rather than to go into somewhere new - just because we couldn't manage the wheelchair, me, and the car all at the same time.
So we're home. We have our blue badge again. I wanted to immediately go out and park somewhere. Hmmm. That's kind of how our relationship began in the first place!!!!
Wednesday, August 26, 2009
Sons and Daughters
Ever look at the rest of the week and think, 'how am I going to make it?' Well, that's how I'm feeling right now. I took yesterday off to get back into the time zone. One day may not have been enough. But, I've got appointments, commitments and decisions that have to be kept, attended and made. So, it's back at it.
I'm so lucky to have a job that allows me to travel to lecture yet remain a part of a team here locally. After spending the week talking to parents at the World Congress, I go back to work with even more determination. As long time readers know, I've been working at Vita on a project that has as it's goal the discovery of strategies that agencies can use to become abuse free. We've been on a wild ride as we've tried various policy changes, changed up how we use staff time, refocussed on self-advocate education and training.
I know in my heart that what we are doing is important but it becomes more 'real' when I speak to parent after parent who wants their children to live safely in the world and to rest safely in the agencies that provide them service. I remember the tremendous trust that parents hand us when their children take part in any of our programmes. They know their children are vulnerable and they hope and pray that we are trustworthy. But they shouldn't have to vaguely hope.
Every agency should be able deliniate the ways that they work towards being safe. Every parent should ask, 'What to you do to reduce or eliminate abuse of those in your care?' Every agency should be able to delineate several practical and 'in practice' strategies that are on-going and in play at all times.
We at Vita have some exciting things planned for the next couple of months. I think of that as I return to work today. I think of the mom who said to me, 'The worst part of having a child with a disability is the need to constantly trust strangers.' I get that. I learned much at the Congress. But what I really needed was to be reminded that this project, the longest of my career, matters.
One of the mothers I met at the conference was Gun who is a regular commenter here on the blog and asked to take a picture of her son with Joe and I. I thank her for sending me a copy.
See that guy in the picture? He's the guy I'm going back to work today for ...
PS. several people have asked me to write about telling a child about disability. i am going to do this in the next few days. give me some time to get it written right.
I'm so lucky to have a job that allows me to travel to lecture yet remain a part of a team here locally. After spending the week talking to parents at the World Congress, I go back to work with even more determination. As long time readers know, I've been working at Vita on a project that has as it's goal the discovery of strategies that agencies can use to become abuse free. We've been on a wild ride as we've tried various policy changes, changed up how we use staff time, refocussed on self-advocate education and training.
I know in my heart that what we are doing is important but it becomes more 'real' when I speak to parent after parent who wants their children to live safely in the world and to rest safely in the agencies that provide them service. I remember the tremendous trust that parents hand us when their children take part in any of our programmes. They know their children are vulnerable and they hope and pray that we are trustworthy. But they shouldn't have to vaguely hope.
Every agency should be able deliniate the ways that they work towards being safe. Every parent should ask, 'What to you do to reduce or eliminate abuse of those in your care?' Every agency should be able to delineate several practical and 'in practice' strategies that are on-going and in play at all times.
We at Vita have some exciting things planned for the next couple of months. I think of that as I return to work today. I think of the mom who said to me, 'The worst part of having a child with a disability is the need to constantly trust strangers.' I get that. I learned much at the Congress. But what I really needed was to be reminded that this project, the longest of my career, matters.
One of the mothers I met at the conference was Gun who is a regular commenter here on the blog and asked to take a picture of her son with Joe and I. I thank her for sending me a copy.
See that guy in the picture? He's the guy I'm going back to work today for ...
PS. several people have asked me to write about telling a child about disability. i am going to do this in the next few days. give me some time to get it written right.
Tuesday, August 25, 2009
Welcome Home
Other than moving around in a wheelchair I am entirely and utterly normal. Why is that such a difficult concept for some in service to get? Occasionally when I have issues with my wheelchair, or health check up due my diabetes, I deal with people who seem incredibly frustrated that I have to check a calander to set appointments with them. Of course I have to check a calander I don't spend my life simply sitting around 'being' disabled or 'having' diabetes. I spend my life spending my life. I'm sorry if we have to spend five or six minutes jumping around from date to date to find somewhere where you are able to give me service and I am able to receive service. Sheesh.
Well, the expectation of 'less than normal' caused us a major problem yesterday. We had booked a Wheeltrans van to pick us up at the airport after being away for over a week. Now we'd booked for 2 people to be picked up at the airport. You'd figure, wouldn't you, if you were picking up two people at the airport that they might just have luggage, right? Well, the van pulled up, exactly on time, the driver got out and I rolled towards the van. Joe began moving the luggage over. The van driver asked if that was our luggage. I said, that it was. We had one largish piece each, two carryons and my wheelchair bag. That's 2 suitcases less than the airline allows us to travel with, by the way.
He said, 'I don't have room for luggage, I'm picking up 3 others.' I said, 'You expected to pick two people up at the airport with no luggage?' He told me that it was Wheeltrans policy that disabled people not have luggage (a fact that I'm going to be writing them about today). We ended up almost shouting at each other, he literally took his ride sheet and shoved it in my face asking about those other people. In that moment I didn't give a shit about those other people. I am disabled but I am normal, I have luggage, I don't carry clothing in my cheeks. He knows I'm angry and I'm afraid I look mighty when I'm angry.
After he makes a phone call, standing several feet away so I can't hear him bitching about me, he returns and says that he will take us directly home. I get in the van, he reaches to help me and I refuse, Joe helps me on and off. I don't want his help, if I had any option I would have rather refused the ride altogether. We all ride in uncomfortable and angry silence for the 45 mintues it takes to get home. When we get home I inform him that I'll be discussing this with Wheeltrans proper and he apologizes if I didn't understand. I told him that I understood just fine.
WTF. What a way to be welcomed home from a trip. Now there will be anxiety any time I use the service to go to the airport. Because I always travel with luggage, that's just wacky me - wanting to take clothing with me.
An announcement:
People with disabilities live normal lives.
People with disabilities have normal commitments.
People with disabilities shouldn't have to apologize to those who work with people with disabilities for HAVING FREAKING LUGGAGE.
Well, the expectation of 'less than normal' caused us a major problem yesterday. We had booked a Wheeltrans van to pick us up at the airport after being away for over a week. Now we'd booked for 2 people to be picked up at the airport. You'd figure, wouldn't you, if you were picking up two people at the airport that they might just have luggage, right? Well, the van pulled up, exactly on time, the driver got out and I rolled towards the van. Joe began moving the luggage over. The van driver asked if that was our luggage. I said, that it was. We had one largish piece each, two carryons and my wheelchair bag. That's 2 suitcases less than the airline allows us to travel with, by the way.
He said, 'I don't have room for luggage, I'm picking up 3 others.' I said, 'You expected to pick two people up at the airport with no luggage?' He told me that it was Wheeltrans policy that disabled people not have luggage (a fact that I'm going to be writing them about today). We ended up almost shouting at each other, he literally took his ride sheet and shoved it in my face asking about those other people. In that moment I didn't give a shit about those other people. I am disabled but I am normal, I have luggage, I don't carry clothing in my cheeks. He knows I'm angry and I'm afraid I look mighty when I'm angry.
After he makes a phone call, standing several feet away so I can't hear him bitching about me, he returns and says that he will take us directly home. I get in the van, he reaches to help me and I refuse, Joe helps me on and off. I don't want his help, if I had any option I would have rather refused the ride altogether. We all ride in uncomfortable and angry silence for the 45 mintues it takes to get home. When we get home I inform him that I'll be discussing this with Wheeltrans proper and he apologizes if I didn't understand. I told him that I understood just fine.
WTF. What a way to be welcomed home from a trip. Now there will be anxiety any time I use the service to go to the airport. Because I always travel with luggage, that's just wacky me - wanting to take clothing with me.
An announcement:
People with disabilities live normal lives.
People with disabilities have normal commitments.
People with disabilities shouldn't have to apologize to those who work with people with disabilities for HAVING FREAKING LUGGAGE.
Monday, August 24, 2009
Moments from the Congress
We fly back to Toronto from Dublin today. The 10th Down Syndrome World Congress is behind us. We spent our one day off driving along the water marvelling at the sheer beauty of the Irish coast. We chatted about our week here and the many moments we had. I thought we'd share some with you.
Moments: The Funniest
On our first day here in Ireland we stopped at a mall where there was a post office. Joe ran in to get some stamps for postcards to send back home. I sat in the rental car and waited for him. At some point I rested my head against the headrest and then something caught my attention and I turned. As I did so I noticed a delightful little tugging as my hair caught in the material of the headrest then tore free. Soon I was sitting with my eyes closed and turning my head slowly from side to side feeling the pull and release, pull and release of the hair on the back of my head. Suddenly I got the feeling someone was watching so I opened my eyes to see an angry looking woman pulling her mobile phone from her purse. She was staring at me. I smiled. She said, 'Are you alright?' I said that I was. Turns out that she had thought that I was a severely disabled man 'stimming' in the car left by some careless 'carer' and she was about to phone emergency services. When Joe got back I told him that he had just barely avoided jail time in a Dublin cell.
Moments: The nicest
I spoke with several parents about how and when to tell their children about the fact of Down Syndrome. One mother talked to me for a long time, mentally taking notes as we chatted. She came back the next day almost glowing. She had to tell me that she had taken my advice and had gone home and had 'the talk' with her son about his disability. She said that she had done it just as I had advised, that it had been an uplifting experience rather than a crushing one. So often I meet and talk with people and have no idea if it matters. It was nice to know it mattered. It was wonderful to know that - if nothing else was achieved - a family was helped.
Moments: The scariest
Sittiing on stage in front of people from around the world being asked to give a 12 minute 'mini-keynote' on sexuality and people with disabilities. From the moment I realized it was only 12 minutes I tried to figure out how to say anything of import in that time. I felt the time ticking down as there were several 'mini-keynotes' before me. I had time to notice the huge audience. A thousand people looks exactly like you think a thousand people would. I had a little notepad in front of me with 4 stories to tell. I kept changing my mind about which to try, trying to guage time. When it came my turn I openned my mouth and was surprised to hear myself say, as I hadn't planned it, 'I have 12 minutes on the topic of sexuality, all the men here are trying to figure out how I'm going to do that, all the women are thinking, 'what's he going to do with the other ten minutes'.
Moments: The warmest
A young woman with Down Syndrome asked to speak to me privately. We went off a bit and she bowed her head, preparing to speak. She looked up at me and put her hand over her heart and said, 'Thank you. I am stronger now.' Her eyes welled up with tears. I remembered her from my workshop, I remembered her struggling to say 'no' with assertion, I remembered her anxiety in being in front of others doing a role play, I remembered her triumphant finish. I said, 'You're welcome. You made me stronger too.' She understood. Who ever said these kids were dumb?
Moments: The saddest
Rolling out of the Congress on the final day. Feeling good about the work done. But feeling sad that the community we'd created, here in Dublin, was slowly dispersing. It was heartening to know that we all individually had the power to make changes to the larger community - yeah, true - but it was nice for it to be 'just us' for a little while.
Moments: The Funniest
On our first day here in Ireland we stopped at a mall where there was a post office. Joe ran in to get some stamps for postcards to send back home. I sat in the rental car and waited for him. At some point I rested my head against the headrest and then something caught my attention and I turned. As I did so I noticed a delightful little tugging as my hair caught in the material of the headrest then tore free. Soon I was sitting with my eyes closed and turning my head slowly from side to side feeling the pull and release, pull and release of the hair on the back of my head. Suddenly I got the feeling someone was watching so I opened my eyes to see an angry looking woman pulling her mobile phone from her purse. She was staring at me. I smiled. She said, 'Are you alright?' I said that I was. Turns out that she had thought that I was a severely disabled man 'stimming' in the car left by some careless 'carer' and she was about to phone emergency services. When Joe got back I told him that he had just barely avoided jail time in a Dublin cell.
Moments: The nicest
I spoke with several parents about how and when to tell their children about the fact of Down Syndrome. One mother talked to me for a long time, mentally taking notes as we chatted. She came back the next day almost glowing. She had to tell me that she had taken my advice and had gone home and had 'the talk' with her son about his disability. She said that she had done it just as I had advised, that it had been an uplifting experience rather than a crushing one. So often I meet and talk with people and have no idea if it matters. It was nice to know it mattered. It was wonderful to know that - if nothing else was achieved - a family was helped.
Moments: The scariest
Sittiing on stage in front of people from around the world being asked to give a 12 minute 'mini-keynote' on sexuality and people with disabilities. From the moment I realized it was only 12 minutes I tried to figure out how to say anything of import in that time. I felt the time ticking down as there were several 'mini-keynotes' before me. I had time to notice the huge audience. A thousand people looks exactly like you think a thousand people would. I had a little notepad in front of me with 4 stories to tell. I kept changing my mind about which to try, trying to guage time. When it came my turn I openned my mouth and was surprised to hear myself say, as I hadn't planned it, 'I have 12 minutes on the topic of sexuality, all the men here are trying to figure out how I'm going to do that, all the women are thinking, 'what's he going to do with the other ten minutes'.
Moments: The warmest
A young woman with Down Syndrome asked to speak to me privately. We went off a bit and she bowed her head, preparing to speak. She looked up at me and put her hand over her heart and said, 'Thank you. I am stronger now.' Her eyes welled up with tears. I remembered her from my workshop, I remembered her struggling to say 'no' with assertion, I remembered her anxiety in being in front of others doing a role play, I remembered her triumphant finish. I said, 'You're welcome. You made me stronger too.' She understood. Who ever said these kids were dumb?
Moments: The saddest
Rolling out of the Congress on the final day. Feeling good about the work done. But feeling sad that the community we'd created, here in Dublin, was slowly dispersing. It was heartening to know that we all individually had the power to make changes to the larger community - yeah, true - but it was nice for it to be 'just us' for a little while.
Sunday, August 23, 2009
Shoes
Her pink nuzzled up against his blue. I noticed her shoes first, they were ridiculously cute. Little kid shoes have always struck me as tiny, perfect, expectations of the road yet to come. Her's were bright and her little stocking feet fit into them perfectly. She had her right arm around the back of her fathers neck, holding on tight as she looked around at the world. His left arm came underneath her, holding her to him. An ordinary sight. Father and daughter.
They were walking through the doors into the Helix, the building where the conference was being held. Others stopped to admire her, the little girl. He grinned with pride and chatted with everyone. Here her difference was noted and welcomed. Here he did not have to walk with wariness. Here it was OK to simply be father and child.
I saw them again later, with wife and son. This time Mom was carrying the child and his son was holding his hand. Mom looked tired and frazzled, he looked exhausted, the kids looked like they had spent all their parents energy and now were starting on their own. They said something to each other then Mom passed daughter to Dad and went off somewhere with the boy. Dad found a place to sit and daughter turned round in his lap to watch the endless flow of people and to wonder in the sheer sound of the place. It sounded - happy.
At one point she turned and put her arms around his neck to give him a hug. A hug just because. A hug to express it all. His eyes closed as he held her and his lips touched her cheek in a gentle kiss.
People talk about progress in attitudes towards people with disabilities by citing reforms and adaptations, services and organizations, laws and legislation. I get all that, I celebrate all that.
But a kiss is progress.
Real progress.
Children with disabilities are discovering something new. Past times meant institutions and hidden lives. Past times meant shame and recrimination. Past times meant barred beds and large wards.
A kiss, a gentle kiss, is more than a show of affection. A kiss is a revolutionary act of acceptance. A kiss defies intolerance and dares discrimination. A kiss claims kinship.
Learning value now, before little shoes take their first step, is the most important lesson any child, ANY child, will ever learn.
They were walking through the doors into the Helix, the building where the conference was being held. Others stopped to admire her, the little girl. He grinned with pride and chatted with everyone. Here her difference was noted and welcomed. Here he did not have to walk with wariness. Here it was OK to simply be father and child.
I saw them again later, with wife and son. This time Mom was carrying the child and his son was holding his hand. Mom looked tired and frazzled, he looked exhausted, the kids looked like they had spent all their parents energy and now were starting on their own. They said something to each other then Mom passed daughter to Dad and went off somewhere with the boy. Dad found a place to sit and daughter turned round in his lap to watch the endless flow of people and to wonder in the sheer sound of the place. It sounded - happy.
At one point she turned and put her arms around his neck to give him a hug. A hug just because. A hug to express it all. His eyes closed as he held her and his lips touched her cheek in a gentle kiss.
People talk about progress in attitudes towards people with disabilities by citing reforms and adaptations, services and organizations, laws and legislation. I get all that, I celebrate all that.
But a kiss is progress.
Real progress.
Children with disabilities are discovering something new. Past times meant institutions and hidden lives. Past times meant shame and recrimination. Past times meant barred beds and large wards.
A kiss, a gentle kiss, is more than a show of affection. A kiss is a revolutionary act of acceptance. A kiss defies intolerance and dares discrimination. A kiss claims kinship.
Learning value now, before little shoes take their first step, is the most important lesson any child, ANY child, will ever learn.
Saturday, August 22, 2009
Step Three
For our first day of work we were in an old chapel that had been part of a military hospital. The building, still with strong military lines, is now an art gallery and various rooms can be let out for conferences and gatherings. I rolled into the chapel to get a sense of the room. Outside was the din of 110 people with Down Syndrome from around the world, all finishing lunch and chatting with friends.
I had a few minutes quiet and given the quiet of the chapel and the atmosphere created by stained glass and high ceilings, I bowed my head and gave thanks that there still were 110 people with Down Syndrome in the world. My prayer was quickly interupted when the room began to fill. Everywhere I looked there were young people, very few elders, with disabilities. The organizers had kept it such that there were very few parents or paid carers in the room.
One of the goals was to hear what the group had to say. It was astonishing that they were so vocal about social intolerance and bigotry. They felt comfortable and loved and home but upon openning the door they felt the chill of discrimination and they entered into community with the expectation of social unkindness.
Yes, those 'happy little Down Syndrome people' have grown up. When getting off the plane here I mentioned that I was going to be working at the World Down Syndrome Conference and one of the women who overheard said, 'Oh, you are going to be surrounded by all smiles.' Besides wanting to puke I looked at the woman and saw that she had adopted one of those faces you get when you look at a lost puppy. Sheee-it that annoys me.
Well, let me tell you, these folks were not smiling when they talked about the names they were called, the stares they endured and the tricks played on them. One woman talked about being played the fool at school - and then being the subject of punishment because others were distracted by her difference. Another talked about having a growing fear of the kids in his neighbourhood as the teasing grows ever more threatening.
This may all depress you but it excites the hell out of me. We could talk about prejudice and discrimination, we could talk about bigots and bigotry, we could talk about individual and social action. These folks had no desire to live as victims. They had every intention of pursuing social change.
Awareness. They have it.
Pride. They are developing it.
Action - thank God I've lived to see the day - it's on it's way.
I had a few minutes quiet and given the quiet of the chapel and the atmosphere created by stained glass and high ceilings, I bowed my head and gave thanks that there still were 110 people with Down Syndrome in the world. My prayer was quickly interupted when the room began to fill. Everywhere I looked there were young people, very few elders, with disabilities. The organizers had kept it such that there were very few parents or paid carers in the room.
One of the goals was to hear what the group had to say. It was astonishing that they were so vocal about social intolerance and bigotry. They felt comfortable and loved and home but upon openning the door they felt the chill of discrimination and they entered into community with the expectation of social unkindness.
Yes, those 'happy little Down Syndrome people' have grown up. When getting off the plane here I mentioned that I was going to be working at the World Down Syndrome Conference and one of the women who overheard said, 'Oh, you are going to be surrounded by all smiles.' Besides wanting to puke I looked at the woman and saw that she had adopted one of those faces you get when you look at a lost puppy. Sheee-it that annoys me.
Well, let me tell you, these folks were not smiling when they talked about the names they were called, the stares they endured and the tricks played on them. One woman talked about being played the fool at school - and then being the subject of punishment because others were distracted by her difference. Another talked about having a growing fear of the kids in his neighbourhood as the teasing grows ever more threatening.
This may all depress you but it excites the hell out of me. We could talk about prejudice and discrimination, we could talk about bigots and bigotry, we could talk about individual and social action. These folks had no desire to live as victims. They had every intention of pursuing social change.
Awareness. They have it.
Pride. They are developing it.
Action - thank God I've lived to see the day - it's on it's way.
Friday, August 21, 2009
Change Is Due
We arrived at lunch time, how convienient huh, at the venue where I would be working with 110 adults with Down Syndrome from around the world. Joe and I chose a table and watched the general hub bub as the world delegates lined up for food, chose tables and picked friends to sit with. Very, very typical. There were several servers each manning a chaffing dish with a specific type of food in it. As the delegates came along they would choose food and be served food by these uniformed waiters and waitresses.
I've been at a billion of these over my lifetime and uniformly the food is slopped out with the efficiency of a prison cook. But as Joe and I watched we saw that those serving were smiling, chatting, even, god forbid, laughing. It was probably the most interactive line I've ever ever seen. I was then distracted by others who were there that I'd met on my last trip to Ireland. There were many to say 'hello', there were many who wanted to catch up.
The day ended as a rousing success, more on that in another blog, and Joe and I were making our way out of the hall. Just outside the door one of the young servers, a man barely out of his teens, he was talking with deep upset with one of the others. I signaled Joe to stop so I could get my wheelchair gloves more securely in place. It took me just long enough to hear what was being said, he said ...
"I teased those people when I was in school, a bunch of us even bullied them, I had no idea, no idea that they were just people. I can't beleive I was like that. I feel just so damned mean and ugly. I smiled at them and every time they smiled back I wanted to cry. Why didn't anyone tell us that they were people.'
Joe and I talked about his realization and agreed that he was at least beginning the journey of challenging his own prejudice. Cause you see, as much as he may deny it, he knew they were people. He just didn't know that they were equal. Aye, there's the rub.
I've been at a billion of these over my lifetime and uniformly the food is slopped out with the efficiency of a prison cook. But as Joe and I watched we saw that those serving were smiling, chatting, even, god forbid, laughing. It was probably the most interactive line I've ever ever seen. I was then distracted by others who were there that I'd met on my last trip to Ireland. There were many to say 'hello', there were many who wanted to catch up.
The day ended as a rousing success, more on that in another blog, and Joe and I were making our way out of the hall. Just outside the door one of the young servers, a man barely out of his teens, he was talking with deep upset with one of the others. I signaled Joe to stop so I could get my wheelchair gloves more securely in place. It took me just long enough to hear what was being said, he said ...
"I teased those people when I was in school, a bunch of us even bullied them, I had no idea, no idea that they were just people. I can't beleive I was like that. I feel just so damned mean and ugly. I smiled at them and every time they smiled back I wanted to cry. Why didn't anyone tell us that they were people.'
Joe and I talked about his realization and agreed that he was at least beginning the journey of challenging his own prejudice. Cause you see, as much as he may deny it, he knew they were people. He just didn't know that they were equal. Aye, there's the rub.
Thursday, August 20, 2009
A Bedtime Story
At three in the morning I knew something had to change. We'd checked into a hotel, assured ourselves that the room was accessible, then looked to see if their 'accessible' came anywhere near our 'accessible'. It did. I admit I didn't look at the bed. We had taken the night flight, where night involved them turning off the airplane lights for two hours and dawn came when they turned the lights back on for breakfast. OK. No sleep.
Luckily our hotel had our room open so we got in easily. I tried to stay up until a reasonable bed time. We gave in and hit the sack around 5 pm. I slept like I hadn't slept which was appropraite for the situation. When I woke at 3 I had to pee like a ... like a ... like a guy who really has to pee has to pee. Yeah, that bad. I sat up and my knees hit my chin. The bed was low. Over the years my center of gravity has sagged and changed. I actually sat there and contemptated the complications of just peeing right then, right there, then rolling backwards into bed.
But no. Instead I rocked and rocked till I had enough propulsion and I shot to a standing position. My belly continued up and then paused and came crashing down into place. It sounded like my body was applauding my acheivement. I made it to the can, made it back to bed. I considered not getting back into bed because I didn't want to get out of it again. But I was tired.
I went back to bed.
In the morning I talked with Joe about the bed. I was worried and I knew that if I spent another night in that bed I lay there worried about being forever marooned on an increasingly stinky and disgusting island. The next day I was booked to do a presentation to over 100 people with Down Syndrome from across the globe. I had to be able to sleep.
Over breakfast I spoke with the hotel manager and asked if another mattress could be thrown on top of the one we have, that would give us height which would give us sleep. She paused for a second, I expected an explanation of why that wasn't possible. She said, instead, 'I don't see why we can't do that for you.' Shortly thereafter the mattress arrived. It's now the perfect height.
The most important tool for living an inclusive and valued life - a voice and the courage to use it. The second most important tool for living an inclusive and valued life ... The next morning we got up refreshed. We'd slept brilliantly. We stopped at the desk and asked for the manager. She came out looking tense, I'm guessing she gets a lot of complaints. I told her that what she had done was perfect and that I appreciated her flexibility and willingness to help. She smiled and said that it hadn't been a problem ... The second most important tool is the ability to say thankyou to those who listen to the voice you use.
Luckily our hotel had our room open so we got in easily. I tried to stay up until a reasonable bed time. We gave in and hit the sack around 5 pm. I slept like I hadn't slept which was appropraite for the situation. When I woke at 3 I had to pee like a ... like a ... like a guy who really has to pee has to pee. Yeah, that bad. I sat up and my knees hit my chin. The bed was low. Over the years my center of gravity has sagged and changed. I actually sat there and contemptated the complications of just peeing right then, right there, then rolling backwards into bed.
But no. Instead I rocked and rocked till I had enough propulsion and I shot to a standing position. My belly continued up and then paused and came crashing down into place. It sounded like my body was applauding my acheivement. I made it to the can, made it back to bed. I considered not getting back into bed because I didn't want to get out of it again. But I was tired.
I went back to bed.
In the morning I talked with Joe about the bed. I was worried and I knew that if I spent another night in that bed I lay there worried about being forever marooned on an increasingly stinky and disgusting island. The next day I was booked to do a presentation to over 100 people with Down Syndrome from across the globe. I had to be able to sleep.
Over breakfast I spoke with the hotel manager and asked if another mattress could be thrown on top of the one we have, that would give us height which would give us sleep. She paused for a second, I expected an explanation of why that wasn't possible. She said, instead, 'I don't see why we can't do that for you.' Shortly thereafter the mattress arrived. It's now the perfect height.
The most important tool for living an inclusive and valued life - a voice and the courage to use it. The second most important tool for living an inclusive and valued life ... The next morning we got up refreshed. We'd slept brilliantly. We stopped at the desk and asked for the manager. She came out looking tense, I'm guessing she gets a lot of complaints. I told her that what she had done was perfect and that I appreciated her flexibility and willingness to help. She smiled and said that it hadn't been a problem ... The second most important tool is the ability to say thankyou to those who listen to the voice you use.
Wednesday, August 19, 2009
Room for Three
Well, that was something else. Disability gives you such way cool experiences - if you choose to see it that way. We arrive at the airport in Dublin and wait until everyone else gets off. When I make my way to the front to see if my wheelchair was there, I found a small group of people gathered, waiting, looking concerned. As it turned out there were three wheelchair users and their friends and family. I asked what was up and found out that there was no jetway, all the other passengers had gone down an enormous set of stairs that had been pulled up to the plane. I was stunned, this was a big, big, plane holding hundreds and hundreds of people, the ground was more than a shout away.
I expressed my concerns and was told that they were going to take us down in a cherry picker. A cherry picker? I pictured one of the cherry pickers from my youth in the interior of British Columbia ... a scruffy faced, skinny, boy. I thought to myself, 'After throwing me over his shoulder and carrying me to the ground I willing to bet he never picks a fucking cherry again.' The two other wheelchair users were women, one with wild hair and a whiskey tenor voice, the other with perfect hair and Betty Boop lipstick. We were an odd grouping but we were all feeling tense.
I was the second off. As it turned out it wasn't a cherry picker. What it was was kind of strange. It was a room, complete with chairs and spaces for wheelchairs that was raised high in the sky. You accessed the room by walking across this ricketty looking metal walkway over to the room. Luckily I could walk over, one of the women had to be carried, I can imagine the fear there. It was a long drop. But as she was set in her chair she said, 'Nah, I wasn't scared, so what's the worst that could happen if he dropped me, I already can't walk.'
Then once we were all in, the room slowly decended. We were then driven over to the terminal. But to get out of our mobile room we had to wait for them to attach a porch to it. This porch was also on hydrolics and would lower us to the ground. Then two women, wearing vests with a variety of disability symbols on them, wheelchair guy, blind guy, guy with ear, kind of a hieroglyphics of crippledom, showed up. They assisted me right through to where we could get a rental car.
Overall I was impressed. Where there was inaccessibility built into the system, creativity created another way of doing things. I reminded myself that though my body may not be flexible, my mind and expectations must remain so ... perhaps a hidden benefit of life with a disability ... learning to adapt, adapt, adapt. And besides, who else gets to drive around the Dublin runways in a motorized room?
I expressed my concerns and was told that they were going to take us down in a cherry picker. A cherry picker? I pictured one of the cherry pickers from my youth in the interior of British Columbia ... a scruffy faced, skinny, boy. I thought to myself, 'After throwing me over his shoulder and carrying me to the ground I willing to bet he never picks a fucking cherry again.' The two other wheelchair users were women, one with wild hair and a whiskey tenor voice, the other with perfect hair and Betty Boop lipstick. We were an odd grouping but we were all feeling tense.
I was the second off. As it turned out it wasn't a cherry picker. What it was was kind of strange. It was a room, complete with chairs and spaces for wheelchairs that was raised high in the sky. You accessed the room by walking across this ricketty looking metal walkway over to the room. Luckily I could walk over, one of the women had to be carried, I can imagine the fear there. It was a long drop. But as she was set in her chair she said, 'Nah, I wasn't scared, so what's the worst that could happen if he dropped me, I already can't walk.'
Then once we were all in, the room slowly decended. We were then driven over to the terminal. But to get out of our mobile room we had to wait for them to attach a porch to it. This porch was also on hydrolics and would lower us to the ground. Then two women, wearing vests with a variety of disability symbols on them, wheelchair guy, blind guy, guy with ear, kind of a hieroglyphics of crippledom, showed up. They assisted me right through to where we could get a rental car.
Overall I was impressed. Where there was inaccessibility built into the system, creativity created another way of doing things. I reminded myself that though my body may not be flexible, my mind and expectations must remain so ... perhaps a hidden benefit of life with a disability ... learning to adapt, adapt, adapt. And besides, who else gets to drive around the Dublin runways in a motorized room?
Tuesday, August 18, 2009
My Bags R Packed I'm Ready to Go
We were being ably assisted by the special service folks at the airline. There was a commotion off to our left, in an airport you pay attention to commotions, and a couple was plunked down in the special services area complete with their luggage cart full of baggage. The man who brought them there came over to special services and spoke quietly to the guy helping me, he left laughing saying 'They are yours now.'
After being processed we were to wait until one of the pushers came to take us to the boarding area. I watched as the couple was approached and it was immediately evident that they were refusing to put their luggage underneath, they wanted to carry on, hold on let me count, 7 pieces of luggage. They spoke with the airline people in a language that I don't understand but I could easily understand the airline guy holding up two fingers and then pointing to the luggage cart and shaking his head.
The couple smiled brightly and the man put a knapsack on his shoulders and the woman pulled a suitcase behind her back (I shit you not) and then they smiled at this wonderful sleight of hand, see now only 5 bags, surely you can let 5 bags go. I smiled at the sheer audacity of people. It was made clear that they could carry on two bags. The clerk left.
Then the couple got to work, they rummaged around in one of their bags and came up with a role of flimsy plastic bags that you get at a grocery store. You can't make this stuff up. They then pulled all the stuff out of two small bags. He still wore the invisible knapsack and she still had a disappeared bag behind her. They then folded up these two now empty bags and shoved them inside one of the larger bags. Now they stuffed their clothing into these plastic bags. Now they had 3 bags on the cart, 2 invisible bags and about 7 plastic bags. They went and got the clerk. He came back and, well, firmly said 2 bags.
They weren't phased. Now they went through their luggage and began putting on layers of clothing. She ended up with 4 blouses and 3 light coats. He had at least 3 pair of pants on, several jackets and he stuffed underwear into each of the coats pockets. That's six pockets. Now they were able to unpack the pastic bags, which, being green, they rolled back up onto the roll. They went and got the clerk.
He came back, I don't know what he said but it was clear they couldn't get onto a plane wearing layers and layers of clothing and besides, they still had too many bags. On his way back he said that he was now ready to take us to the gate.
I asked him who was going to win the battle of the suitcases. He just shook his head and said, 'I like working special services because,' and here he paused thinking about what he was going to say, but then gave way, 'Normal people drive me nuts.'
After being processed we were to wait until one of the pushers came to take us to the boarding area. I watched as the couple was approached and it was immediately evident that they were refusing to put their luggage underneath, they wanted to carry on, hold on let me count, 7 pieces of luggage. They spoke with the airline people in a language that I don't understand but I could easily understand the airline guy holding up two fingers and then pointing to the luggage cart and shaking his head.
The couple smiled brightly and the man put a knapsack on his shoulders and the woman pulled a suitcase behind her back (I shit you not) and then they smiled at this wonderful sleight of hand, see now only 5 bags, surely you can let 5 bags go. I smiled at the sheer audacity of people. It was made clear that they could carry on two bags. The clerk left.
Then the couple got to work, they rummaged around in one of their bags and came up with a role of flimsy plastic bags that you get at a grocery store. You can't make this stuff up. They then pulled all the stuff out of two small bags. He still wore the invisible knapsack and she still had a disappeared bag behind her. They then folded up these two now empty bags and shoved them inside one of the larger bags. Now they stuffed their clothing into these plastic bags. Now they had 3 bags on the cart, 2 invisible bags and about 7 plastic bags. They went and got the clerk. He came back and, well, firmly said 2 bags.
They weren't phased. Now they went through their luggage and began putting on layers of clothing. She ended up with 4 blouses and 3 light coats. He had at least 3 pair of pants on, several jackets and he stuffed underwear into each of the coats pockets. That's six pockets. Now they were able to unpack the pastic bags, which, being green, they rolled back up onto the roll. They went and got the clerk.
He came back, I don't know what he said but it was clear they couldn't get onto a plane wearing layers and layers of clothing and besides, they still had too many bags. On his way back he said that he was now ready to take us to the gate.
I asked him who was going to win the battle of the suitcases. He just shook his head and said, 'I like working special services because,' and here he paused thinking about what he was going to say, but then gave way, 'Normal people drive me nuts.'
Monday, August 17, 2009
A Blog While In Transit
So here's how I do it. Please pay attention, there will be a quiz. Shannon, quiet down. Tessa stop fiddling. Mike stop making eyes at the girls. Ready, class. Now, again, HERE'S HOW I DO IT.
I was in ValueMart doing some grocery shopping two walkies had stopped to talk to each other. They were enjoying themselves. I quietly and simply backed up and went round the other way. No big deal. What I'm doing isn't the most important thing in the world. No huge act of sacrifice, I was shopping for FRACKS sake.
OK, I see you are still confused. Manuela, get off the blackberry and eyes forward. Wendy, Wendy, WENDY!! Belinda, you can write your blog later, eyes up, eyes up. Again, another example.
The aisle is narrow and even though she is small, she is taking up all available space. She is looking at something, trying to decide. I simply wait, where I am, for her to finish. I don't want to break her concentration.
One more tiny example. You at the back, don't make me come down there. Alright. One final example.
I'm rolling down the street in my power chair, someone is coming my way. I keep rolling down my side, they continue to walk down their side.
Alright?
It seems simple doesn't it.
Well apparently it isn't. Because many of you freaking, fracking walking talking two footed creatures keep acting like it's a huge freaking, fracking imposition having to wait a moment until I clear a space or, heaven forfend, step around me. More than that all you tiny, weeny, little people who keep throwing yourselves off sidewalks and against walls as I'm passing in my wheelchair. I don't know if you simply don't even want to be in my aura or if you really can't judge space. But peel yourself off the freaking wall and just walk by for heavens sake.
And, and, and, if you need to assert your importance while grocery shopping, if you have a desperate need for everyone around to understand that you are the most incredibly important and busy person in the whole freaking fracking world, then, my friend, you are a loser.
Ready for the quiz ... ah to hell with it, you get it or you don't.
I was in ValueMart doing some grocery shopping two walkies had stopped to talk to each other. They were enjoying themselves. I quietly and simply backed up and went round the other way. No big deal. What I'm doing isn't the most important thing in the world. No huge act of sacrifice, I was shopping for FRACKS sake.
OK, I see you are still confused. Manuela, get off the blackberry and eyes forward. Wendy, Wendy, WENDY!! Belinda, you can write your blog later, eyes up, eyes up. Again, another example.
The aisle is narrow and even though she is small, she is taking up all available space. She is looking at something, trying to decide. I simply wait, where I am, for her to finish. I don't want to break her concentration.
One more tiny example. You at the back, don't make me come down there. Alright. One final example.
I'm rolling down the street in my power chair, someone is coming my way. I keep rolling down my side, they continue to walk down their side.
Alright?
It seems simple doesn't it.
Well apparently it isn't. Because many of you freaking, fracking walking talking two footed creatures keep acting like it's a huge freaking, fracking imposition having to wait a moment until I clear a space or, heaven forfend, step around me. More than that all you tiny, weeny, little people who keep throwing yourselves off sidewalks and against walls as I'm passing in my wheelchair. I don't know if you simply don't even want to be in my aura or if you really can't judge space. But peel yourself off the freaking wall and just walk by for heavens sake.
And, and, and, if you need to assert your importance while grocery shopping, if you have a desperate need for everyone around to understand that you are the most incredibly important and busy person in the whole freaking fracking world, then, my friend, you are a loser.
Ready for the quiz ... ah to hell with it, you get it or you don't.
Sunday, August 16, 2009
Getting There
It will be a day of waiting.
A day of anxiety.
We fly to Dublin tonight in order to be there for the World Down Syndrome Congress. We are flying in a couple days early in order to adapt to the time zone change, something we do less well as we get older. I am not a nervous flyer. Well, more honestly, I am no longer a fearful flyer. At one time I was terrified of flight. But after many years of travelling for a living, after thousands of flights, that fear has abated. Now I simply marvel at the process.
Becoming disabled had added a new wrinkle in the process of flying. I have to depend upon the help and kindness of strangers. Some paid, some not. I'll arrive at the airport with Joe and go to 'Special Services' to check in and then be assisted the long distance from the counter to the departure lounge. We double check the seating arrangements and then the great 'push' happens. I am big. I am heavy. I am on wheels. I know it takes work to push me. That knowledge is bad enough. Some who work there are gracious, some are not. Some are kindly, some are resentful. It's the luck of the draw. I worry, now and I will worry all day, about who's hands I fall into.
On the plane itself I'll be seated beside Joe, so that's OK. But it's the person in the seat ahead of me. Standing up is no longer really easy for me. I have to use the back of the seat ahead of me and the back of my own seat to brace myself and then to rise. In order to do this I have to have the seat ahead of me in 'the full upright position'. I'm going to have to ask. Sometimes the person is cool. But many more times than you will imagine, they are not. This could be an easy thing or a difficult thing, it all depends on who's hands I fall into.
When we travel by car to events I have no travel jitters. Joe and I work so well together on these trips, knowing what each other needs and managing to arrange for both to be happy. This is because we depend on no one but each other. I like that.
I am so looking forward to Dublin.
It's just the getting there.
A day of anxiety.
We fly to Dublin tonight in order to be there for the World Down Syndrome Congress. We are flying in a couple days early in order to adapt to the time zone change, something we do less well as we get older. I am not a nervous flyer. Well, more honestly, I am no longer a fearful flyer. At one time I was terrified of flight. But after many years of travelling for a living, after thousands of flights, that fear has abated. Now I simply marvel at the process.
Becoming disabled had added a new wrinkle in the process of flying. I have to depend upon the help and kindness of strangers. Some paid, some not. I'll arrive at the airport with Joe and go to 'Special Services' to check in and then be assisted the long distance from the counter to the departure lounge. We double check the seating arrangements and then the great 'push' happens. I am big. I am heavy. I am on wheels. I know it takes work to push me. That knowledge is bad enough. Some who work there are gracious, some are not. Some are kindly, some are resentful. It's the luck of the draw. I worry, now and I will worry all day, about who's hands I fall into.
On the plane itself I'll be seated beside Joe, so that's OK. But it's the person in the seat ahead of me. Standing up is no longer really easy for me. I have to use the back of the seat ahead of me and the back of my own seat to brace myself and then to rise. In order to do this I have to have the seat ahead of me in 'the full upright position'. I'm going to have to ask. Sometimes the person is cool. But many more times than you will imagine, they are not. This could be an easy thing or a difficult thing, it all depends on who's hands I fall into.
When we travel by car to events I have no travel jitters. Joe and I work so well together on these trips, knowing what each other needs and managing to arrange for both to be happy. This is because we depend on no one but each other. I like that.
I am so looking forward to Dublin.
It's just the getting there.
Saturday, August 15, 2009
Popcorn Girl
Waiting in the line up for popcorn, we were called over to a new till just openned. The woman calling us over is a harsh looking woman of little personality and cold unfriendliness. Joe has mentioned her a number of times as we frequent that movie theatre on a regular basis.
Now that I have the power chair I can help carry popcorn and drinks so I was in line with him. I'd never been served by her but Joe pointed her out every time. 'She's the kind of mean one,' he'd say. I'd nod. I watched her and never saw a smile but I also never saw anything much more than an efficient quick serve of treats and taking of money.
When she called us over I was really curious. Joe and I placed our order. She glanced at me a couple of times. Like she was sizing me up. She went and got the popcorn and poured the drink. As she was setting them out she looked at me again, I saw her make the decision in her head, "What movie are you going to see," she said.
That's not accurate the words poured out of her in a jumble. She had difficulty with breath control, a line of sweat formed on her brow, but the words were out. I smiled, I had figured she had calculated and put in in the 'safe to try speaking to' category and I was wonderously honoured, "We are going to see District 9, have you seen it?"
She took another breath and more words poured out. Something about a radio programme about the movie, something about suppositions about aliens, something about history. It didn't make a lot of sense but it was a lot of words. She looked as if she would collapse. I said, "Sounds like a great radio show," She looked grateful and said, "It was."
We left for the movie. I couldn't shake the feeling that something huge had just happened. Shyness is not a disability but it should be. I wonder how many people think that her cold service comes from a cold heart. I wonder how many don't notice that her desire to serve quickly and accurately demonstrates a kind of caring that words cannot, by themselves, demonstrate. I wondered what about me seemed to be less threatening - why she chose to try with me.
I think the wheelchair had something to do with it. That somehow she identified with those who have a bit of difficulty getting through life. That somehow, maybe, I would respond with kindness.
Joe said, "Wow, a smile really changes her face."
Welcome to the outside world, popcorn girl.
Now that I have the power chair I can help carry popcorn and drinks so I was in line with him. I'd never been served by her but Joe pointed her out every time. 'She's the kind of mean one,' he'd say. I'd nod. I watched her and never saw a smile but I also never saw anything much more than an efficient quick serve of treats and taking of money.
When she called us over I was really curious. Joe and I placed our order. She glanced at me a couple of times. Like she was sizing me up. She went and got the popcorn and poured the drink. As she was setting them out she looked at me again, I saw her make the decision in her head, "What movie are you going to see," she said.
That's not accurate the words poured out of her in a jumble. She had difficulty with breath control, a line of sweat formed on her brow, but the words were out. I smiled, I had figured she had calculated and put in in the 'safe to try speaking to' category and I was wonderously honoured, "We are going to see District 9, have you seen it?"
She took another breath and more words poured out. Something about a radio programme about the movie, something about suppositions about aliens, something about history. It didn't make a lot of sense but it was a lot of words. She looked as if she would collapse. I said, "Sounds like a great radio show," She looked grateful and said, "It was."
We left for the movie. I couldn't shake the feeling that something huge had just happened. Shyness is not a disability but it should be. I wonder how many people think that her cold service comes from a cold heart. I wonder how many don't notice that her desire to serve quickly and accurately demonstrates a kind of caring that words cannot, by themselves, demonstrate. I wondered what about me seemed to be less threatening - why she chose to try with me.
I think the wheelchair had something to do with it. That somehow she identified with those who have a bit of difficulty getting through life. That somehow, maybe, I would respond with kindness.
Joe said, "Wow, a smile really changes her face."
Welcome to the outside world, popcorn girl.
Friday, August 14, 2009
The Send Button
It was hard to do.
We were facing a difficult clinical issue. I had given clear direction for someone to follow. I don't go into these situations lightly and I think about them deeply. I've never forgotten that I'm muddling in people's lives so I never give advice that I don't think about. I thought what I had come up with was fair, respectful and safe.
So it surprised me that the person whom I was directing (don't try to guess where this happened, I consult to a variety of different organizations) made a different decision and changed one part of the process that I had recommended. She informed me that whilst following my instructions she got new and different information therefore she felt that she had to incorporate that information into the process and alter the plan accordingly. I should have felt pleased that she felt able, under my clinical supervision, to make new and different decisions.
I did not.
I took a breath and calmly (I'm not a yeller) explained (I'm an explainer) that she needed, in this circumstance because of all the issues involved, to follow my instructions. She apologized saying that she had made a big mistake, I accepted her apology and gave new instructions for what was to happen next. It was all very kind and very forgiving on my part but I'm sure she got the message 'don't mess with my recommendations'.
Then, time passes as time has a habit of doing.
Then, I thought about what had happened and about the new information that she had gotten during her work with the individual involved. And because time had passed and there was distance between the moment she told me of the change and the 'now' I realized that, in fact, she had made a good decision. That I would have, in the same circumstance made the same decision. That my insisting that she should have followed, lock step, my recommendations was an error.
Oh well, at least I'm not a yeller. I could simply let it slide.
So. I did.
Then, I thought that if I didn't talk to her she would forever think that she shouldn't think when I'm consulting to her. She would mistrust her own judgements, which proved to be very clear and very insightful, and maybe start making mistakes. She would begin to look for guidance when she should simply be providing leadership. This was no longer about the individual being served or the decision being made. This was about my character and her future.
Shit.
Then, I sat down and wrote an email saying that I had been wrong in my assessment that the new information didn't change anything - cause it did. That her decision was correct and that she did a good job of a difficult situation - she altered the part of the recommendations I had made that were affected by the new information but not the rest. Her clinical insight is good, she has judgements that she should trust and that she should always think independently in her work with me. I apologized for taking so long to figure it out. I told her that I may be older, I may consult to her but I also may - occasionaly and rarely granted - be wrong.
I read the email over and over again. Part of me really didn't want to send it. Who likes admiting they are wrong? Part of me went into a fit - she'll never follow your instructions again, she'll act independently not asking for help when she should, she'll think less of you. With those voices clamouring for time in my head, I pushed 'send'.
I saw her recently. She smiled broadly and was walking maybe an inch taller. But, what's this, there was a renewed respect in her eyes when she looked at me.
That, I didn't expect.
We were facing a difficult clinical issue. I had given clear direction for someone to follow. I don't go into these situations lightly and I think about them deeply. I've never forgotten that I'm muddling in people's lives so I never give advice that I don't think about. I thought what I had come up with was fair, respectful and safe.
So it surprised me that the person whom I was directing (don't try to guess where this happened, I consult to a variety of different organizations) made a different decision and changed one part of the process that I had recommended. She informed me that whilst following my instructions she got new and different information therefore she felt that she had to incorporate that information into the process and alter the plan accordingly. I should have felt pleased that she felt able, under my clinical supervision, to make new and different decisions.
I did not.
I took a breath and calmly (I'm not a yeller) explained (I'm an explainer) that she needed, in this circumstance because of all the issues involved, to follow my instructions. She apologized saying that she had made a big mistake, I accepted her apology and gave new instructions for what was to happen next. It was all very kind and very forgiving on my part but I'm sure she got the message 'don't mess with my recommendations'.
Then, time passes as time has a habit of doing.
Then, I thought about what had happened and about the new information that she had gotten during her work with the individual involved. And because time had passed and there was distance between the moment she told me of the change and the 'now' I realized that, in fact, she had made a good decision. That I would have, in the same circumstance made the same decision. That my insisting that she should have followed, lock step, my recommendations was an error.
Oh well, at least I'm not a yeller. I could simply let it slide.
So. I did.
Then, I thought that if I didn't talk to her she would forever think that she shouldn't think when I'm consulting to her. She would mistrust her own judgements, which proved to be very clear and very insightful, and maybe start making mistakes. She would begin to look for guidance when she should simply be providing leadership. This was no longer about the individual being served or the decision being made. This was about my character and her future.
Shit.
Then, I sat down and wrote an email saying that I had been wrong in my assessment that the new information didn't change anything - cause it did. That her decision was correct and that she did a good job of a difficult situation - she altered the part of the recommendations I had made that were affected by the new information but not the rest. Her clinical insight is good, she has judgements that she should trust and that she should always think independently in her work with me. I apologized for taking so long to figure it out. I told her that I may be older, I may consult to her but I also may - occasionaly and rarely granted - be wrong.
I read the email over and over again. Part of me really didn't want to send it. Who likes admiting they are wrong? Part of me went into a fit - she'll never follow your instructions again, she'll act independently not asking for help when she should, she'll think less of you. With those voices clamouring for time in my head, I pushed 'send'.
I saw her recently. She smiled broadly and was walking maybe an inch taller. But, what's this, there was a renewed respect in her eyes when she looked at me.
That, I didn't expect.
Thursday, August 13, 2009
Facing Facts
God has given you one face, and you make yourself another.
William Shakespeare
I have avoided this for a very long time, thought I might get away with it. Though it's requested regularly I do not have a photograph that people can use on advertising. I'm told, though I don't believe, that seeing the speaker's picture encourages people to register. Ummm, why?
For reasons I don't want to get into here, it comes to pass that I have to actually have one of those things. I don't like having my picture taken, I don't like posing for shots, I don't like the entire process. Every time, except one (there is a story there), that I've been asked to pose for a picture at a lecture, I have done so. Every time, I smile. Every time, I mean it, I'm always a little in shock that someone would want their picture with me, always a little honoured too. So, other's have pictures of me, but I don't.
Mike, dad to Ruby, husband to Marissa, is a photographer and takes amazing shots. He's done wonderful work at Vita with people with disabilities and I'm used to him being around taking pictures, that's what he does, it's part of who he is. I notice his camera as little as he notices my wheelchair. So, I asked him if he'd take something official. He has a thousand, no exaggeration, shots of Joe and I over the years. He sends them to us in dribs and drabs, not wanting to overwhelm us. We really aren't much into pictures. So I just left it to him to catch a candid moment.
So, yesterday, Mike emailed to say that he'd done my photograph and wanted to send it electronically. I gulped. I don't want to get into a history of being bullied, teased, called ugly and worse - that's only part of what bothers me. I have an easier relationship with my body, fat and disabled, than I do with my face. I'm not one who passes a mirror by with a stealthy glance. I'm one who uses a mirror to shave. That's it.
We are insecure, all of us, about things shallow and deep, profound and profane. But, I had no choice and I asked Mike to go ahead and hit send. I'm a little surprised that I'm going to show this picture here on my blog. I'm a little surprised that I'm trusting all of you so very much. But, it's just that I thought Mike did a really good job. I called to tell him so and he went on and on about lighting and texture and stuff. I just said, 'I like it.' He just said, 'Cool.'
So here it is, for the first time ever -
A Portrait of An Activist As An Old Man:
William Shakespeare
I have avoided this for a very long time, thought I might get away with it. Though it's requested regularly I do not have a photograph that people can use on advertising. I'm told, though I don't believe, that seeing the speaker's picture encourages people to register. Ummm, why?
For reasons I don't want to get into here, it comes to pass that I have to actually have one of those things. I don't like having my picture taken, I don't like posing for shots, I don't like the entire process. Every time, except one (there is a story there), that I've been asked to pose for a picture at a lecture, I have done so. Every time, I smile. Every time, I mean it, I'm always a little in shock that someone would want their picture with me, always a little honoured too. So, other's have pictures of me, but I don't.
Mike, dad to Ruby, husband to Marissa, is a photographer and takes amazing shots. He's done wonderful work at Vita with people with disabilities and I'm used to him being around taking pictures, that's what he does, it's part of who he is. I notice his camera as little as he notices my wheelchair. So, I asked him if he'd take something official. He has a thousand, no exaggeration, shots of Joe and I over the years. He sends them to us in dribs and drabs, not wanting to overwhelm us. We really aren't much into pictures. So I just left it to him to catch a candid moment.
So, yesterday, Mike emailed to say that he'd done my photograph and wanted to send it electronically. I gulped. I don't want to get into a history of being bullied, teased, called ugly and worse - that's only part of what bothers me. I have an easier relationship with my body, fat and disabled, than I do with my face. I'm not one who passes a mirror by with a stealthy glance. I'm one who uses a mirror to shave. That's it.
We are insecure, all of us, about things shallow and deep, profound and profane. But, I had no choice and I asked Mike to go ahead and hit send. I'm a little surprised that I'm going to show this picture here on my blog. I'm a little surprised that I'm trusting all of you so very much. But, it's just that I thought Mike did a really good job. I called to tell him so and he went on and on about lighting and texture and stuff. I just said, 'I like it.' He just said, 'Cool.'
So here it is, for the first time ever -
A Portrait of An Activist As An Old Man:
Wednesday, August 12, 2009
In Memorium
Eunice Kennedy Shriver: A Torch Was Lit: A Torch Still Burns
It is tempting in our work with people with disabilities to steal accomplisments and to co-opt success. It is tempting to see the world, and it's changes, as a result of our work and our passion. It is tempting to see people with disabilities as the grateful beneficiaries of our munificence - gosh aren't we great?
What I really remarked from listening, over the years, to the speaches of Eunice Kennedy Shriver is that she managed to resist temptation. She managed to place in the hands of people with disabilities the reponsibility to change the world and the recognition for their active part in social change. Shriver was one of the first to really conceptualize people with intellectual disabilities as a legitimate minority with a responsibility and a mandate to cause social change by challenging social prejudice. In one of her most magnificent pieces of oratory she said: The right to play on any playing field? You have earned it. The right to study in any school? You have earned it. The right to hold a job? You have earned it. The right to be anyone’s neighbor? You have earned it!
And she was right. We may set the stage, but people with disabilities must act upon it. We may integrate a school, but people with disabilities need to walk down the hallway. We may start Special Olympics but people with disabilities need to show up and run. Schriever, rightly, saw that 'opportuntiy' was all that was lacking in the lives of people with disabilities. She saw the world as a place where it was possible to succeed if possibilities were available.
Many years ago I was hired to attend, and report on, the Special Olympics World Games when they were here in Toronto. I was a skeptic, at best, when I went in. I had been spoon fed negative stereotypes of Special Olympics. But free of all rhetoric, I was able to watch and form my own opinion. I was stunned at what I saw. I saw competition. I saw respect. I saw a kind of inclusion that I'd never understood before. I left changed.
I wrote a piece as a result of that experience called Hot Fudge Sunday, first published in the TASH newsletter, it was reprinted in newsletters all over North America. One day, months later, I openned a letter from Sargent Shriver thanking me for what I had written and for having the courage to speak honestly, and without prejudice, about what I had seen. I was amazed at the letter I held in my hand. I felt the faintest touch of the 'magic' that comes with THAT name.
Special Olympics aside, and that's a big aside, what really moves me about Eunice Shriver is the fact that she decided to go public about her sister, Rosemary. While the subject of Rosemary's life is complicated and shrouded in family secrecy, what is clear is that it was Eunice that visited her, Eunice that kept the family contact alive, and Eunice who claimed her. In an era where disability, particularly intellectual disability, was a source of familial shame, Eunice came forward and embraced her sister, disability and all, publically. This act of sisterly love, this act of family unity, moves me still. There is power in truth and there is strength in declaration. By publically placing her arm around her sister's shoulders, she demonstrated that love is an act of inclusion.
Today is a day to remember and celebrate the life of Eunice Kennedy Shriver. She reminded us that it’s possible to change the world. She reminded us that it’s possible to have a vision of a just world. She reminded us of the power of just one person in the life of another person.
“Let me win, but if I cannot win, let me be brave in my attempt” is the Special Olympics pledge. Eunice Kennedy Shriver had the best of both, she won, and was brave in the attempt. Rest Well.
Timothy Shriver, her son, who now heads Special Olymics has asked people to go to a Eunice Kennedy Shriver website to leave messages, memories and memorials. While there you can here the quote I used to begin this blog recorded live. It is nice to hear her voice so strong and vibrant - but it's also nice to hear the cheer at the end as people with disabilities with one voice shouted 'RAH!'
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