2001

2001 An Odyssey in filling this space.

Yesterday's post was post 2000! Today I keep counting on. It did cause me to stop and ponder. Was the blog doing what I wanted it to do? Was it something I still wanted to do? Was it habit, or need, or did it indeed serve some purpose. No, I'm not asking for confirmation from you all as readers, you are good at doing that along the way, and occasionally something will happen that makes me really glad I posted that day and that I had a blog. I think it's just that these milestones need to be marked somehow. And for me, since there's not going to be a party, I celebrate by pondering.

The blog has changed since it began. I had decided to blog for simply one year, as a means of documenting my life as a person with a disability and how that intersected with my life as a service provider. Well, that was well over a year ago, so the blog has clearly taken on it's own life and sometimes seems to have a personality a bit separate from my own. That's odd to say but I've spoken to other bloggers who say similar things.

So what do I want to achieve with the blog now? I wondered.

For awhile, maybe three years ago, I was really intentionally blogging because there had been a rumour gone round that I had passed away. Wanted to dispel that pretty quickly, dead can have a serious impact on one's ability to make a living. Then, after resurrection, there was a rumour gone round that I had retired. Like that's ever going to happen. So, I wrote to reassure those who wanted to book me for trainings or consultations that I was up and working and really, REALLY not retired. But, since then, I've blogged because there were things I wanted to say, and the blog was a good way of saying them.

Now I think I blog because I feel part of a small community here on Rolling Around In My Head. I check comments both to see what you think about what I wrote and to see who's hanging round. I find myself challenged some times, annoyed sometimes, moved sometimes, tickled sometimes ...just as I do with people in my non blog world. It's an odd relationship we all have here, but it is a relationship.

Joe asked if I was still eager to keep the blog going. I admitted to him that there were days where it was a struggle to write something, both because of being tired but also, sometimes, because nothing happened to write about. But then, usually, almost always, I find something to say. Other times, there will be a line up of topics, I've got three blog ideas lined up, so I'm good for this week.

Anyways, I just wanted to say that I'm here because you're here. So thanks! I like RAIMH's blog community and am really pleased to be part of it. Tomorrow we're two steps on the way to three thousand. Oh, my suddenly I got winded just from typing that!

Dinosaur Poo, Ruby and Me

This story, in all seriousness, began millions of years ago when a dinosaur unceremoniously took a poo. Don't stop reading because, really, truly, that's where this story begins. I don't understand how things happen but that poo, of a distinctly poo-ish shape, became fossilized over time. Then some wandering scientist interested in fossilized poo, there really are scientists who study dinosaur poo, I know because I watched this bizarre video of an excited scientist talking about dino dumps, found the poo and put it in a sack. That sack of poo made it's way through whatever labyrinthine journey necessary to become a display at the Canadian Museum of Nature. Not only that, it became one of the 'touchable' interactive displays. This is where we enter into the strange story of Dinosaur poo, a little girl and and an old man.

After lunching in the museum restaurant we headed into the dinosaur room just across the hall. We were killing a bit of time before a showing of the 3D movie Sea Monsters and dinosaurs are always fun. Just after entering, I was a bit ahead of the group and I noticed a oddly poo shaped rock out for public display and, for the courageous, touching. I saw right underneath the rock that this was Fossilized Dinosaur Dung. Just then Ruby rounded the corner, saw something 'touchable' and headed for it. Now, I tried to stop her. It was my intention to ask her to decide whether or not she wanted to touch it and then I'd tell her what it was.  She saw my attempt to block her hand from grabbing hold of the 'dung' as a game and slipped around me and wrapped her little fingers around the pointy end.

She saw the look of mock horror on my face and asked, 'What?'

'Do you want to know what that is?' I asked.

She nodded.

'It's dinosaur poop.'

Her hand flew off the rock as fast as it could fly, it was a blur in the air. Her eyes widened and her mouth opened, she was struck wordless for only a second and then, 'Oh. My. God!!' I began to laugh. For Ruby this was extremely violent language and the horror on her face was so exaggerated as to be outrageously comic. I laughed and laughed and laughed. Mike came over and asked what was going on. 'Daddy, what it that?' she asked pointing to the poo. She didn't believe me. Mike, still not knowing what had happened said, in an echo of his daughter, 'Oh. My. God. That's Dinosaur Poop.' Ruby shook her head and set her jaw, she was having none of it.

About ten minutes later Ruby reached out to me to grab my attention. I shrunk back saying, 'Don't touch me with that hand, it touched Dinosaur poop.' Now she was insistent, 'I did not.' I said, 'Yes, you, did. That was fossilized dinosaur poop'. She said to the skies, as if entreating the heavens, her arms outstretched 'That is just not possible.' Then I lost it.

I laughed, and I laughed, and I laughed. I was doubled over in my chair with my gloved hand over my face. Ruby was staring at me realizing that my laughter meant it was probably true, she had touched dinosaur poo. Disgust registered right into her pores. Then she shook it off and off we went.

Later, when we were on the elevator going down to the movie we were chatting with another family. Ruby had tired of walking and I was holding her on my lap. The subject of the Dinosaur Poo came up and I said, 'And Ruby here grabbed hold of it.' She shook her head and said, 'IT WASN'T DINOSAUR POOP.' I asked her what it was. She said with real emphasis, 'They spray painted a rock.' The elevator echoed with laughter and Ruby sank down into me with a determination that what she had said was true. I'm afraid it must have been an uncomfortable ride for Ruby because my belly shook like a bowlful of jelly.

Driving away, heading back home. I knew I had work waiting. Work that I should not have left because there is a deadline and it is close. Making the decision to cut out and head to Ottawa for family time was not an easy one. But I was glad I did. I go to work today with a determination to finish one paper and begin another. It seemed that my gas tank was empty and those moments of pure laughter and delight managed to fill the tank back up again.

That and four hugs just before leaving.

Consider this post a belated thank you to a dinosaur, long gone, who just at the right time and just at the right place took an enormous poo. Little did it know that that poo would go on to become a source of mirth and give a moments respite to a tired, slightly depressed, wheelchair guy who needed a laugh. I don't know if Hallmark makes a 'thank you' card for the gift of steaming poo, but if they did, I'd buy it, drive back to Ottawa and tuck it under the exhibit.

Propeller

On our way to visit Mike, Marissa and the kids on Thursday one of my faithful readers sent me information about an integrated dance company called Propeller and told me that there would be classes on Saturday morning for kids Ruby's age. I got into the hotel and looked up their webpage, and if you clicked the link above, you will have seen that it's an impressive page. The classes looked like fun and we spoke to Mike and Marissa and they agreed that we could take Ruby Saturday morning if she wanted to go. She, upon hearing about it, was immediately up for it. She told us, in an amazing act of assertion, that she might feel shy around the older kids and, though she wanted to go, she didn't know if she wanted to participate. We struck a bargain. She participated only if she wanted, we would not encourage or prompt or otherwise try to talk her into it. We all shook on the agreement.

Saturday morning came and it started out with Ruby sitting in the back of the car very quietly. She's a talker and silence isn't the norm with her. We talked and once again we quelled her nerves by assuring her about our behaviour - not about the event itself. She would not be forced to do anything. It was all her call. I know that sometimes kids need encouragement but, too, kids need the opportunity to practice decision making. This seemed to be that time. She perked up and by the time we arrived she was eager to go in. The parking lot was round the side and as we made our way there several buses arrived depositing wheelchair users showing up for the class. I got out and the sidewalk seemed impassible. My weight plus my narrow tires plus the snow and ice made it almost impossible. Joe made it really clear that we were going to make it. Sometimes, I do what I do because and only because Joe makes it happen. I sometimes give up more easily than he does.

We were the first to arrive and by the time I got in my gloves were soaked, my hands were cold, and I was already worried about getting back to the car. But, people were arriving and the gym was filling with energy. Ruby was shy but, without prompting, joined in the circle with the other kids. And, my, what a diverse lot of cool kids. Ruby paid no mind, and my heart swelled with pride here, to the various kinds of differences in the room She was not taken aback by any of the wheelchair users or any of the kids with intellectual disabilities, or indeed any of the more typical kids either. She took it in stride. We could see her natural reticence with others and a bit of shyness peeking out, but, nonetheless she stayed.

Jessie, one of the teaching assistants, who had introduced herself to us and to Ruby when we arrived noticed during one of the beginning exercises, that Ruby was feeling a bit out of place. She didn't know these kids, any of them, and she was, amongst difference, the odd person out. Jessie took a bit of extra time and gave some special attention to Ruby nudging her along and bringing her into both movement and the group itself. That Jessie was a teacher with Down Syndrome didn't seem to register with Ruby, Jessie was just a teacher taking time with her. As Ruby relaxed into the group, Jessie's attentions went elsewhere. She gave just enough and stopping long before too much. By the end Ruby was smiling and participating and doing all the various activities. Along with Jessie the other teachers and other kids did a marvelous job of keeping everyone involved and everyone included. They made inclusion seem natural. Most of all, they demonstrated that inclusion was entirely possible.

Just before the end I had to go to the washroom so we slipped out and found it. Joe went back into the gym and I waited out with the other parents. Here's a shock, all dads! One of the fathers told me about how much his son with an intellectual disability looks forward to the classes and how much the experience has meant to him, his son and his family. We swapped 'proud of kids' stories, it was nice. Ruby came out and announced to me that she had just been a piece of cheese pizza! I looked perplexed and she just smiled. Joe explained to me later about how the class ended with all the kids laying down in a big circle and being cut into slices of pizza, when they were 'cut' from the group they got up and left. Ruby chose, as a vegetarian, to be a piece of cheese pizza.

Of all the things about the class that she could have told her parents. The differences of the other kids, the friendly support of the teachers and the encouragement of Jessie, that's what she chose to tell. 'Mom, Dad, I was a piece of cheese pizza!' Then she asked if she could join the class and go every Saturday. She'd have fun. So, Monday, she'll be registered.

I've already thanked Jessie, though she was busy so I had to leave a message for her, for taking the time with Ruby and I also asked her permission to write about her here on my blog. She wrote me an email telling me that it was OK.

That's right, Ruby's teacher, who took time with her, wrote me an email. Suddenly it makes the fact that she has Down Syndrome both more important and less important. I don't think I have to explain that statement. But for Ruby, Jessie is just that nice woman who gave her a high five exactly when she needed it. And that, on a cold day, was very cool to see.

DNA

Joe's father, Joe, was a lovely man. Full of the love of life and with a generosity of spirit that was so natural to him that it had to be coded into his DNA. He had a harmonica, and could play. He loved to both tell a joke and hear a joke. He worked hard. He played hard. And, maybe most important of all, he loved his family. He was terrific around children and seemed to have a natural ability to know just what to do to make them laugh, just what to do to make them feel loved. A remarkable man.

Whenever he came to visit us, either in University when we were students, or to Toronto when we were first starting out, he'd look in our fridge and then go out and buy groceries for us. We didn't need him to do that, well maybe we did sometimes, but he did it because he wanted to, it made him happy. He liked to give in practical ways, love in concrete ways. I still remember him fondly. More than that, I remember him often. Probably because Joe is very much his son. Joe not only looks like his dad but he carries himself in a similar manner. Both easily moved to laughter. Both easily moved to generosity.

I think the thing that I learned from him that I value the most is the fact that it's possible to live a life in which you are remembered well and fondly. It's possible to set an example for how to simply 'be' in the world which will indelibly leave a mark on the heart of those you've touched. It's possible to be, in a way, immortal. I want this.

We don't actively think, when we are with the kids, about these things. Living in the past and living for the future are both dangerous things. Being in the present affects the past, because it becomes the past. Being in the the present affects the future because, in the present, direction is set. So, we try to be in the present as much as possible. This is particularly true when we are with Ruby and Sadie. It's so cool to simple be part of their life now - we get to become part of their past and be in on the development of the future. And we do this only, simply, by being with them.

Sadie, when she came out of day care and saw us in our car, pointed at us grinning saying 'Dough!' She doesn't watch the news so isn't familiar with Bennifer and Brangelinda and our penchant for combining names, she just naturally came up with 'Dough' as a combination of Dave and Joe. Her grin told us that she remembered the fun we've had in the past and that she anticipated more of the same. How nice. We went to one of those playland kind of places here in Ottawa and before even heading over to the games and the flashing lights she was up and into our arms for a huge Sadie hug.

On our way out of the grocery store, I stopped to buy some lottery tickets. Everyone needs a retirement plan after all. I got Ruby to pick the tickets. She had stayed back with me in the store while everyone else had gone to get the cars, it was cold and snowy. When the woman gave me the tickets she said, 'I hope you are lucky!' Ruby nodded, agreeing. I said to Ruby, 'But I'm already lucky, I get to know a girl named Ruby.' I thought the lottery ticket woman was going to melt when she saw Ruby get tears in her eyes. On the way out she put her hand on my arm and said, 'Is it OK if I remember you said that for a long time?'

I told her that if that was the only thing she remembered about me when she was all grown up, I'd be happy. Then the cars arrived and there was a swirl of activity. Ruby always rides with us when we are all together, Sadie still wants to be with Mom and Dad. Joe was loading the wheelchair into the trunk when Ruby piped up, she'd been thinking. 'I think I'll remember the wheelchair too, it's fun.'

Then we were all off to make the past and build the future. Just like Joe's Dad Joe did for us.

Superfast

When Ruby found out we were going to see her in the morning she asked, 'Do we have to come to Toronto?' I told her, that we were coming to Ottawa. She asked if we were staying at their house, an odd question because we never do. I said we were going to be in a hotel. She's been in a lot of hotels with us so I reminded her, 'It's the hotel with the long hallway where you get to run superfast.' She knew immediately which hotel it was and got excited.

After all she likes to run superfast and she knows the hotel has a pool. So she asked, 'Wanna see me run superfast right now??' I asked her how I could see her because I was on the phone. She thought for a minute and said, 'You don't have to SEE me.'

Huh?

'I'll put the phone down hard so you can hear it, I'll run over there, and then I'll run back and pick up the phone and say, hi. And, AND, I'll run superfast both over there and back here.'

Without waiting, she dropped the phone, I heard running steps off into the distance and then all the way back, she picked up the phone and said, breathlessly, 'Hi, Dave.'

'Wow, that was really superfast,' I said, not knowing where she ran to and from but knowing that it must have been superfast any ways.

I struggled to stay on the phone for a few more minutes because I so wanted to get off the phone to tell Joe. So after we said goodbye, I told Joe about the superfast race.

We both agreed that's she's becoming the master of adaptability and accessibility, 'can't see me, who cares? We'll do it a different way!'

For the longest time I thought that Ruby with her penchant for spirituality and lovely discussions about God and his Kid was headed for the ministry.

Now, I'm hoping she's headed for a Ministry in the House of Commons. By gum, with her at the helm, adaptation and creativity will be the norm and accessibility will be the law.

Solutions (Two)

We made the decision quickly. Without even much of a second thought. What with the International Day of Mourning and Memory, and all the posts regarding that day, there has been so much emotion expended. Along with that, I've been doing a literature search on people with intellectual disabilities as witnesses in the justice system. This is in preparation for doing an article demonstrating that Self Esteem, Sex Education and Abuse Prevention classes taught to people with disabilities give them the words with which to tell what has happened to them and the self esteem needed to fuel courage in making and allegation and in testifying. We've got strong data to show that this works.

But, my oh my, the research is a bit bleak. It was shortly after reading a study that showed that if you give a written account of testimony to one group, telling them that the witness had an intellectual disability and exactly the same written account to another group telling them that the witness had typical cognition (I don't remember the words they used) the group who had been told that the witness had a disability rated the witness as non-credible and the group who had read the same testimony believing it was a typical witness saw the testimony as credible. Incredible? Incredible. Anyway, much of the research is about that kind of thing. But that was the one that pushed me over the edge.

Yesterday, for my sake, and for the sake of you as readers, I wanted to lighten up a little bit here on Rolling Around in My Head. It's good to look at life straight on , but it's also good to see good. But that study had me sit back in my chair at my desk at work, pick up the phone and call Joe to say, 'I need to go see Ruby and Sadie. I need a hug from the kids.' Joe agreed instantaneously, and it was all set up. We go tomorrow night. I'm more delighted than you can imagine.

I have a tendency towards both depression and anxiety. Not a debilitating tendency but those twin demons can rob me of the ability to experience joy. Given that I work, so often, in the area of abuse  - even though it's abuse prevention, life can get dark for me. Given too, that working on this paper has had me reading articles that are basically about how people with intellectual disabilities can be shut out of the justice system, not because of the disability they were born with but because of inability thrust upon them by forced ignorance and denied information. Imagine that a police office, already predisposed to see those with intellectual disabilities as incompetent, interviewing a woman who talks about how a man put his 'thingy' in her 'woo woo'. He will assume that that language is due to disability. He will not know that her disability was the cause for others to deny her the education from which she could have developed vocabulary. We've demonstrated that 'thingy' becomes 'penis' and 'woo woo' become 'vulva' in ONE TWO HOUR CLASS. We've demonstrated that passivity becomes assertion in ... Oops, I'm ranting.

Anyways, I'm halfway through the journal article now, I've got the data all done, I've got the literature review finished, I've got the introduction written. And through all that, I've managed to get myself right, royally, rueful. So, I'm going to get a Ruby Hug and a Sadie Hug and probably a Mike and Marissa Hug too. We'll spend the day with kids in a noisy kid place and then a day in a museum and then we'll come home. Monday I'll finish. I'll have pushed off all the darkness and be ready to write about solutions not problems ... which is the frame of mind I need to be in to write the next part of what needs to be written. The ... OK that's the problem ... ta, da, here's a solution. I shouldn't be doing this, I don't have time to do this, but I have to do this ... does that make sense?

So tomorrow it's video-conference ... hi to you folks up in the North, if anyone reads this let me know during the question section ... and then it's off to Ottawa. I hope to have a Ruby and Sadie stories on the blog on Saturday and Sunday. 

FYI

There has been a bit of controversy going on over at 'The Canadian Weblog Awards' and you might want to pop over there to see what's going on. For those of you who might be confused. In Canada we have two very different blog awards. The Canadian Blog Awards, where you went to vote for me and where I won Best Personal Blog (thank you) is one where readers vote. 'The Canadian Weblog Awards' are a juried award system where readers votes aren't part of the process. Janet, who might be the Janet who comments here sometimes, raised the point that all the bloggers who write about physical and cognitive disabilities have been shut out in the short list and thus will not win an award. The two categories being discussed are 'Ecology and Social Justice' and 'Health and Wellness'.

She suggests that there is bias amongst the judges in that no disabled blogger made the cut. Schmutzie, the organizer, has brought Janet's post forward to discuss and this has resulted in interesting comments and discussion. If you go there, scroll down the suggested list of new blog categories to the discussion of Janet's comment and then go back up to the one that's on top currently. There you will find that Schmutzie has asked for an appropriate name for the new disability category. Help her out if you can.

I commented as a blogger who did not make the short list in either category - but not so much about that as about the 'health and wellness' category as an inappropriate place for the 'disability' bloggers to be placed. Anyways, I'd like to hear your point of view. Is Janet right? Do you think there was bias in the judging. It's hard for me to give an opinion because I'm not sure how I could separte not making the cut from my opinion. I think I could give a fair opinion but no matter what I do I'll be seen as being either 'gracious' or 'bitter' ... so, I'm going to leave the opinion stating to those of you interested enough in these sorts of things.

Today's post follow ...

Right Now

Right now I'm eating left over pizza. Double sauce, double cheeze, double hot peppers and pineapple - it's good even cold. I love cold pizza.

Right now I'm flipping through an Italian translation of one of my books, it came out a while ago but I just recieved a copy of it now. I can't read a single word in it but it's very, very cool.

Right now I'm writing an email to a person with whom I had a fight several years ago and with whom bonds have been reestablished. It's a funny, silly email, the kind that you send to people just for fun.

Right now I'm listening to a message on the phone from Ruby. Haven't seen her for awhile so I decided to play it back and giggle when she giggles trying to tell a joke.

Right now I'm listening to the kettle come to boil for a cup of tea. I haven't had a cup for several hours and I'm at the point of desperately needing one.

Right now I'm planning what to have for supper. We both feel like comfort food, not pizza comfort, home cooked comfort so we've just decided on one of our favourites.

Right now I'm thinking about this year's vacation. We've all decided to go somewhere new this year and I'm about to Mapquest the drive to Moncton.

Right now I'm extremely pleased to have a Canadian Blog Award for Best Personal Blog in 2011 on my Blog. I shouldn't have lusted for it, but I did and I'm happy to have readers that bothered to vote!

Right now I'm sitting in my housecoat in my wheelchair at the computer writing my blog. It's a simple blog, purposely so, after all the heavy posts from the last few weeks, it feels right to feel alright.

Right now I'm thinking that a nap might be good. I think I might just let darkness settle snug around us while I'm snuggly snoring in my bed.

Right now is right now and I intend to live now right.

A Public Letter

To: Still in Hiding:

I do not know if what I'm about to do will be upsetting to you. I want to highlight your comment regarding the 'She Never Knew She Never Knew' video by making it part of a blog post. I usually don't do this without permission, however, I have no way to reach you. I finally decided that your comment was bravely made in a public space, therefore, it was intended to be read. I hope, I really hope, that doing this is OK with you.

To Blog Readers:

For those who did not read the comment, I am reproducing it here, completely without edits:

I was angry at you when I saw that video for the first time. I didn't like to be made to feel feelings that I've stuffed away. I did not live in an institution, I lived with something equally damaging. I lived with being my mother's tragedy and my father's disappointment. They didn't want a child on wheels. They never took me out, admitted to only a few of my existance. I was home schooled, the call it now, but the experiece was rather like getting education in a prison cell. If I left the house, it was after dark, and we'd drive long distances to be in placed where we'd meet no one we knew. I never knew about girlfriends, and gossiping, and dances, and playing with others. The difference between Arlene and myself? I knew I never knew. And it's left it's mark. I can't go out without a sense of shame. People's stares hurt me to the core, more than they should, because I know that my parents fled from them. Mr. Hingsberger, I happened upon your blog while looking for something else. I've stayed ever since. I've never commented. But I want you to know that you have introduced me to a world of pride and self respect as a person with a disability. I don't know why you write this blog, I can sometimes feel the cost behind the words. But I want you to know that for me, here in the rest of the life I have, you have made a difference. Thank you. On the 23rd, I will hold a small funeral for my childhood. Then, I hope, I can say goodbye to all that and begin to work on beginning. I shall play this song as my prayer for the childhood, for the life, I lost. Thank you Dana and Miles. Thank you for telling the story of many of us.

To: Still in Hiding:

 I thought of you all day yesterday. The image of someone having a funeral for their childhood registers in my mind and heart as a tremendous act of courage. Saying 'goodbye' and 'farewell' to one's past is one thing, but to say 'rest in peace' to memories is quite another. I have tried, many times, to bid adieu to hurtful moments, but they never listened. I had said 'Goodbye' but they had not listened. They trotted along behind me, weighing me down at some moments, catching me off guard at others. It wasn't until I did, as you have now done, allowed them to rest, to have their own peace that I began to feel free of them. I had to mourn their place in my life, I had to grieve the loss of the anger with which I had held them so tight, an anger that consumed me. The hurt was gone, but my limbs had grown weary from having carried them so far along the way. I hadn't thought of this process as a 'funeral' but I'm guessing that's exactly what it was. So, though you don't know me. I was there with you, several times yesterday, in spirit. I believe that many readers here, I have generous hearted readers, were with you too.

What I wanted to say to you, however, was that life is not to be lived in hiding. I know I am presumptuous to say this to you. And I may well be wrong. But, I feel this deep need to say what I have to say. Many, many writers in the disability community have written that the gay community and the disabled community are twin communities. That we are born into families much different than ourselves. Some of us are born in to families who accept our difference with love, others, deep in their hearts, would wish us different if they could. So, even nestled into our mother's arm's, even sitting on our father's laps, we are different. Part of the process of growing into pride, which is every bit as important as growing into adulthood (and adulthood may not be truly possible without it) is the 'coming out' process. Not 'coming out' to the world. No, that comes later, much later. We begin by coming out to ourselves. We begin by accepting who we are and what we are and how we are. We begin by rejecting the definitions that others put on our lives and begin for forge our own. We begin by acknowledging our difference in the face of prejudice, our difference in the face of bigotry, our difference in the face of bias. We lose the language of self delusion, we no longer say, 'I don't consider myself to have a disability.' or 'I only focus on my abilities' or 'I am just like everyone else'.  Instead we begin to speak to ourselves of ourselves as people with disabilities - as members of a community, as part of a movement, as having a place to belong and a perspective to offer. We began seeing who we are as entwined with what we are and how we are and even begin to see then ... the biggest miracle ... why we are.

You signed off your comment on the blog with 'Still In Hiding' but, oh no, you aren't. By writing that comment, by peeking into a disability blog and by staying and by reading, the door was being slowly swung open. You have smelled fresh air ... welcome. I am honoured that you have come here to Rolling Around in My Head. I'd recommend, again presumptuous, for you to read fellow comment makers and follow links back to their own blogs. You will find here readers who are parents, who proudly love their kids. You will find here care providers, who proudly serve and wish to serve well. But, most importantly for you, you will find others with disabilities here. All of whom have made a journey. All of whom have decided to be publicly, and sometimes even wonderfully outrageously, proud.

I would love to hear from you again, sometime, even on my personal email, which you will find over there under the picture of Joe and I, or here amongst this tiny, little, loving community.

I Will Never Forget: Guest Post for the International Day of Mourning and Memory

I received an email from a woman I met many years ago when we were both much, much, younger. She wrote this and sent it to me, kind of a personal reflection on the International Day of Mourning and Memory. I felt that it was too powerful and too important a story for my eyes only. I asked her for her permission to put it up here on my blog and she has graciously allowed me to do so. I am very, very, touched by how people have taken this day so seriously and spent time thinking, remembering and reflecting. 

I Will Never Forget

Susan Ludwig-Goharriz

It was almost my first job after graduating from University as a nurse.  There had been an aggressive campaign to recruit new graduates to the State School.  The School was like a small community – at one time housing thousands of individuals with developmental disability in a cluster of “cottages.”  In the same community was a hospital – used to care for the most medically fragile of those individuals as well as any individual from the cottages who became ill.  I would be a staff nurse in this hospital.

The school was supposed to be “progressive” in its care model.  It was an attempt to offer “institutional” care in the most “home like” surroundings.  The hospital was supposed to be a place where care providers were experts in caring for the various specific needs of the community members.

The reality was starkly different from the model that was touted to the country that was still embracing the Kennedy administration’s attempts to give better care to the disabled.  It was a country that was still reeling in shock at the ending of that presidential life . . . but still trusting in the capacity of institutions to make decisions about those who were deemed unable to make their own decisions.

Our new patient was admitted from one of the cottages with a serious ear infection.  Green drainage ran down his neck – so contagious that he had two infected fingers where he had scratched at the itching drainage and the hang-nails on his fingers became angry red and swollen.  He was among strangers in the hospital – and the staff genuinely tried to do what they could to support him in his new environment.

The doctors on the floor were not competent to practice in the community.  They had not passed their State Board exams and so their practice was restricted to institutions.  My strongest recollection of them was when they reported me to my head nurse because I had refused to stand when they entered the nursing station.  Their arrogance was only surpassed by their ignorance.

The plan of care for my new patient?  Well, there was virtually no plan of care.  They prescribed topical antibiotics for the sores on his fingers – and oral antibiotics for the ear infection.  There were no lab tests ordered to be sure that the antibiotics they ordered were appropriate to the infection – just give the oral medications and don’t question our judgment.  The infection showed no sign of abating even after several days on the prescribed regimen.

One afternoon, I arrived for my shift.  This young man was having seizures.  He wasn’t having just one seizure – but one followed by another.  The seizure activity was such that it was driving his temperature up by the hour.  Our head nurse (experienced and kindly but not willing to challenge the medical system) was trying everything she could to control his fever, but the seizures continued – one after the other for the entire shift. 

He appeared to be beyond understanding what was happening to him.  During the few moments between seizures he seemed to be dazed.  I knew he was in pain – but no medication was allowed to relieve his pain.  The fingers continued to be angry red – his ear continued to discharge its steady stream of infection.  The doctors refused to discuss any alternative treatment – there were no IV’s to replenish his fluids or electrolytes.  There was no attempt to sedate him in the hopes that his seizures would diminish.  At the time, it was suggested that administering general anaesthesia would make the seizures pause for a long enough time to bring his fever down.  The physicians smugly declined to offer any treatment that would have helped this young man.

The next day I arrived for my shift and this patient’s bed was empty.  He had lived almost 36 hours with one seizure after another.  Finally, his fever was so high that his vital organs shut down.  One of the doctors visited the floor later that evening – and with a certain amount of smugness advised me that they had immediately contacted the family of this man and requested permission to have his body cremated.  The family had given permission and the doctors had hastened to follow the family’s wishes thereby sidestepping an autopsy.

My mind goes back to him often.  I see him as the head nurse was desperately trying to bring his temperature down – and how everything we tried had failed.  I was filled with the rage that comes from feeling totally helpless in the face of a system that forgets.  It forgets the value of the individual and his quality of life.

Day of Mourning and Memory: YouTube Update

This was just sent to me, done by a student named Kristine Snider Thank you so much Kristine, I loved it! For those who don't know some People First groups in Canada use a yellow and black ribbon as a symbol of remembrance - this is what's referred to in the video.

Hello again, I am feeling very scattered because of other duties and expectations right now. I'd like, however, to have a resource of all blogs published today about this day. I've read one written by Andrea which has a tremendous amount of information and Amanda's comment on one of the posts here which she has compiled into a blog post of her own. I've also been and read Lene's post of the day, no surprise here she won a Canadian Blog Award as a writer.  I also found on Google a round up of links by Lounalune . I've just been sent another post by reader Myr for inclusion here. And another arrived this morning Gina @ InkyEd! a powerful meditation. I missed one from yesterday, from Kristine's fellow student at Loyalist, life with the belly monster. There are probably more, please put them in the comment section and I'll move them up here where it's easier for people to find them.

Cousin Mattie: The International Day of Mourning and Memory

Cousin Mattie scared me, not because of who she was, but because of what she represented. By the time that the whispers of her existence reached me, I knew I was different. I didn't have a name for it and it would be some blessed years before I first heard 'faggot' and 'gearbox' and 'homo'. The naming of my difference, apparently, was done by those who hated it. All I knew was that deep down inside me there was housed difference. It doesn't take children long to learn that difference is to be feared, to be beaten and to be bullied. I see all these advertisements about bullying on television and, though I applaud the effort and intent, I always feel that the message is always written by those who once bullied never by those who experienced it. Difference, at an early age, came to mean separate. That, I had learned before the whispers of Cousin Mattie. That, I hed learned early and well. I began building an inner home of safety with tiny baby fingers in which Lego blocks looked huge.

Though I couldn't name my difference, I could fear it. I feared what it meant, not as a descriptor but as a predictor. I knew that this nameless difference would mean loss and hatred and even violence. Cousin Mattie had a nameless difference too. She was spoken about in whispers. She was part of a conversation that adults had with adults. Cousin Mattie was only spoken about when we, children, were sent outside to play. I never saw Cousin Mattie. I never met her. Even so, her absence made her very present at family events. There was someone who's name had the power to silence conversation, who's name had the power to freeze adults to the spot, who's name had the ultimate power of shaming. Cousin Mattie lived elsewhere but her hand manage to grip the soul of my family.

As I grew older and brasher, I learned only that Cousin Mattie was 'slow'. I don't think the 'r word' was used to describe her. When it became clear to me that Cousin Mattie had been cast out for her difference, the realization rang a bell in me that has still not stopped sounding. Selfishly, I understood her as a warning, not as a person. I thought, then, little of where she was or what was happening to her, I thought only of me - and my difference. I looked at the faces of Aunts and Uncles, of Grandmothers and Grandfathers and, of course, Parents ... and knew, deep down, that I was already cast away. That I was loved, conditionally, that I was loved for the 'David worn' for public view, not the 'David lived' in private.

The existence of institutions that lock away the different was purportedly done by a society that willed to care for the 'less fortunate' - a term that itself reeks of prejudicial thinking, every time someone uses that term they stand a little taller knowing that fortune blessed them, that life gave them a prize and that God grace fell upon them. It's amazing how privilege is always believed to be deserved. Those institutions, where Cousin Mattie lived, to me were never about care, they stood as monuments to the tyranny of the norm. They stood as reminders to all that in a moment, in an instant, freedom and liberty and justice can cease to exist, replaced with policies and procedures and programmes. I didn't know where the 'away' was where Cousin Mattie lived, but I didn't need to know. What part of 'away' is hard to understand.

I still don't know where she lived and when she died. I do not know where she was buried. I do not know how she lived or how she died. She never knew that I never knew. Worse, she never knew that I cared to know. The fact of institutionalization, for it is still a fact, is a societal travesty that continues unrecognized. It is unrecognized for the damage that it did, not only to the lives of those with disabilities, but also to the large social psyche of humanity. We live in a society wherein, all over the world, thousand upon thousands of fellow humans, fellow citizens are caged. We live in a society where barbarity is called compassion and wherein the propaganda against the difference of disability goes unchallenged by all but those who know and experience disability. The testimony of those with disabilities as to our human status is seen as 'cute' and maybe 'charming' and maybe even 'inspirational' but it's never accepted as really true. The testimony of parents who embrace and love their kids with disabilities, who see them grow and see them learn is dismissed as denial and self delusion.

Cousin Mattie lived a life in whispers and in silence. But so too do those of us with disabilities who wish to be part of the debate about the value of our lives. So too do those who parent and those who marry and those who love us who would wish to raise a dissenting view. I am told that justice will prevail, but I do not believe this ... justice, as everyone knows is blind and therefore, like millions of disabled people, is busy looking for a job.

This day, the first 'International Day of Mourning and Memory for the Lives of People with Disabilites' was created to call attention to the crimes against the lives that could have been lived, that should have been shared. It is also dedicated to those who continue to rise and fight, who refuse to be silent, who advocate long past exhaustion. And it is here that I want to mention Cousin Mattie again.The only thing I know about her was that she was a difficult child - a defiant child. Cousin Mattie was a fighter. I think that is the only reason I ever heard of her at all. She had to be discussed, she must have fought hard against the constraints of her life, because, then as now, families come to meetings when people become problems. Cousin Mattie will never know what her life came to mean to me.

I understood, long before it became time to announce my difference, what it might cost me. I understood that there was a land called 'away'. And I wasn't afraid of that land - because I had family there.

The Queston Has Been Asked

Yesterday, yes Saturday, I did a training on abuse prevention for perhaps the youngest audience I have ever spoken to in my life. They didn't know it, because I never said it, but from my position of 'old man' it seemed like I was looking at the very future of services to people with disabilities. There wasn't a grey hair amongst them, nary a wrinkle to be seen, they all had 'evolution hands' which looked as if they could text messages and tie shoes while programming an I pod. Luckily, though, they still had an attention span and they seemed to be with me and listening from the moment I started.

This presentation which is a little different than the 'typical' presentation, involves an hour talking and then an hour chatting and answering questions. Again, I was lucky because after a nervous silence when it came time to answer questions, they began asking, well thought out and well formed questions. This was a bright group. I appreciated the opportunity to talk to them and the time was flying by - for me at least, I'm not so sure how they felt.

But then a young man sitting off to the side asked me what might have been the best question I've ever been asked in all my years of training and teaching. Now understand I don't say this lightly. I believe that every question is a good question. I understand the courage it takes  to speak up and ask something, I understand the concern that everyone has that their question is a 'stupid question'. Whenever I am in a presentation and asking a question of the presenter I have the nagging fear at the back of my mind that I'm asking a question to which everyone in the room already knows the answer. So, I get it. I appreciate all questions.

His question, however, was a question that indicated that maybe, just maybe, there is a glimmer of hope that the system that serves can become a system that's safe. For the last many years I've been working in that direction. I want parents to feel that their children are safe in our hands. I want people with disabilities to never have to fear our hands. I want us all, at the end our our careers, to be proud of what our hands have done. And I was never, really, sure, that that was a possibility. But his question gave me hope. I tried not to gush at him about the question because all the other questions had been good ones - and I didn't want people to think that it had been a competition. I did say, 'I've never been asked that question before.' I didn't say, 'I have been waiting for that question for years, without knowing it, that's the question I've been waiting for.'

He put his hand up and when I called on him, he asked (and I'm not going to get the wording quite right), "Given you've talked about the power we all have in our relationship to the people we care for, what do we each personally do to deal with that power to ensure that we never, ever, misuse it."

A stunner of a question, isn't it?

I'm not going into my answer here and now as it would take too long and I'm way prouder of him for the question than me for my answer. I do want to say WHY I thought this question, finally asked, is so important, why it's the 'big question'. In that question is an entire acceptance of the personal responsibility we each have for the safety of others. So many staff see themselves as victims of the system as working for horrible supervisors as without control in their work as pawns in the human service machinery. Some of that may be true, some of it may just be whining, some of it might be simply an example of how some human souls are attracted to personal victimhood like iron filings to magnets.

This question begins in a different place with a different set of assumptions. This question begins with an understanding of deep personal responsibility. This question begins with the person as separate from the system they work in, begins with the very relationship between one person and another, begins with the hierarchy and power that comes in that relationship. Abuse is almost always a crime of relationship - that single fact is almost never acknowledged in human services. People talk about the responsibility of systems, rarely the responsibility of one individual to another.

I left that training feeling something new in my heart. A kind of lightness and, could it be, faith that maybe there is a new awareness beginning, after all THE QUESTION had been asked. Minds are now ready for a new concept, a new way of thinking about what we do. Tomorrow is the International Day of Mourning and Memory where I hope we remember lives lost, lives lived unlived. And yet today I'm feeling hope for a future where people will be in the hands of people who use their hands carefully and wisely and with full responsibility.

On some of my posts, I get some emails from people, who don't wish to leave a comment, that tells me that sometimes I write things and see things as significant that maybe aren't. The post I wrote about the woman with Down Syndrome signing her name received the most 'Dave, you've lost it' emails that I've recieved in some time. I suspect this one might too. And I think that's because I'm an imperfect writer who sometimes can't put into words what I'm really feeling. Sometimes I know, deeply, the meaning I want to get across but my words simply can't convey it. All I can say, in my own defense, is that yesterday, a few words were strung together to form a question that gave me a deep sense of hope in the future, and maybe that's all I need you to understand here today.

She Never Knew: The Interviews

When I first saw the video, ‘She Never Knew She Never Knew,’ I sat in my chair stunned. The visual, the words, the powerful message with it’s underlying outrage touched me somewhere deep down in my heart. Institutional hallways have resounded with the echos of my steps. I’ve seen the ‘land of the long corridor’, I’ve seen what it does to people with disabilities who live there, I’ve seen what it does to the staff who work there and I've seen what it does to family who visit there. The video was stunning, but it was the words of the song which captured me. The incredible sense of loss … the mammoth theft of life which occurred in plain view. “Who pays the time for the crime against an innocent child?” is the question the song asks. The answer is stark … 

So I approached my interview with Dana Mase, the songs singer and co-writer, with a bit of trepidation.  I’m not an interviewer, I’m also someone who reacts to talent with awe and I was afraid of simply making a fool out of myself.  I called Dana at the specified time and she answered with a warm voice and was very open to speaking with me. She told me that the song came to be because, Myles Wren, a friend who worked with people with disabilities was thinking of doing a documentary and wanted her to write a song for it.

During the course of their conversation Arlene’s story came to the fore. A lovely, kind and gentle woman had lived much of her life locked away for the crime of difference. Dana said, “If I was going to write a song about her experience, I had to get to know her, meet her, spend time with her. I found a woman who was warm and lovely. As I talked with her, I began to understand what had been taken from her. She was a little child, she had no say.”

I told Dana that her approach to Arlene's story was what captured my heart and mind. I have spent so much of my life working in the area of abuse and victimization that when I think about the captivity of the institutions, I think about what was done to people there. The outrageous stories of abuse which continue to shock us, continue to hold us accountable. However, Dana's song opened a different part of my mind to a different part of the story. I understood what what done to people with disabilities but I did not consider, as I should have, what was taken from them. Perhaps the greatest abuse was the theft of the life that could have been lived.

Later on, in visiting the institution where Arlene had lived to film the video, Dana reflected, “The contrast between this warm, beautiful person and this cold cruel institution was hard. It seemed just so unjust. Until I walked in there I had no awareness that this had occurred. This blew me away. It seemed just so wrong. For people to blossom, there must be warmth and love, this seemed to be the opposite of that.”

Dana also spoke about how, as she came at this from ‘outside’ from ‘not knowing’ she had to go deep within herself to write the song.  In doing this she realized what pain had been experienced and that “you can’t fix it, it’s done, lives have been stolen, basic things that are taken for granted, she missed them, they were taken away from her.’ It was this understanding that has led Dana to establish a therapeutic riding programme for people with disabilities. "I want people to have all sorts of experiences open to them. I want them to be able to experience as much as they can in this world. I love horses, I thought this was a way I could share that love."

Myles Wren, was also kind enough to speak to me. He works with a lot of older people with intellectual disabilities. Many of whom lived in large institutions. Many of whom had stories to tell, stories that are unlikely to be heard.  Arlene’s story touched him deeply because, over time, he’d formed a bond with her, ‘when my father passed away, Arlene put her arm around my shoulder and told me that she would be there for me.’ Here a woman who had no family, knew, instinctively, how to be family.

Both Dana and Myles, who is a co-writer of the song,  hope that the song and the video will be used to raise awareness and to focus on the injustice of lost lives, unlived loves, unexperienced dreams. I believe that the song does that. I believe it is making a difference. Both Dana and Miles speak of how the song affects others with a bit of awe, Myles said, "Everyone who sees it, understands it, almost everyone cries," and Dana said, "The song touches people for a reason, what they are seeing is a tragedy beyond understanding."

She Never Knew She Never Knew … but we know what was done. And because we know we have a responsibility to make ‘never again’ more than a slogan, it must simply be our pledge.

For those who missed the video last time, here it is again:

International Day of Mourning and Memory: Update

Today I'm going to interview Dana Mase and I'm really excited by that fact. Her interview will appear on Saturday, if all goes according to plan. I'm telling you now because I have a significant dip in readership on the weekends and I want to invite you to drop in on Saturday. Ms Mase is the woman who's song, 'She Never Knew She Never Knew' appeared on the blog a couple days ago. It fits very well with the theme of 'the International Day of Mourning and Memory' and I'm eager to hear the story behind the song. I've heard from people all over the globe that they will be participating in some way on Monday. There hasn't been much organizing time for this year but I'm gratified that many have seen that the purpose of the day has been embraced by so many. See you Saturday ...

Today's post follows ...

My Voice, Please, Leave Me My Voice

Today I went shopping at lunch time, just after having a hair cut, and we were on our way home. We needed a few ingredients to make a wonderfully spicy Mexican soup. The store we typically shop at has a narrow entrance that sometimes becomes blocked by shoppers getting things from the deli counter. Even those who are 'two footers' have to wait some times. For us 'four wheelers' it's a little more common event. I don't mind. I'm never really in that much of a rush when I'm shopping.

Lunchtime was crazy busy and an older fellow was picking out something from the deli and he's left his cart right in the way. A couple of other shoppers moved his cart slightly so they could slip by. He didn't notice. I parked off to the side content to wait for him to finish. I really wasn't in a rush. He didn't notice me waiting and I didn't attempt to call myself to his attention. He'd be done soon enough.

A woman came by, clearly from the office tower, and was offended on my behalf. She saw me waiting there and caught my eye as she went past. I saw her reach out to touch the fellow to ask him to move. I said to her, not him, 'No, it's OK, I don't mind waiting.' She said, to me not him, 'He has no right to block the aisle so you can't pass.' I said, to him not her, as he was now aware of the kerfuffle, 'Finish up your shopping, I'll wait.' She said to him, not me, because clearly I didn't understand that my rights were being denied, 'You shouldn't block the aisle so this man can't get in in his wheelchair.' I said to both of them, 'It's OK.'

He looked embarrassed and apologized and struggled to move the cart. He was flustered so it took him longer than it should have and he nearly toppled it over and almost ran into someone. She looked triumphant that she'd righted a wrong, fought the valiant fight, brought the inconsiderate to their knees. I was mortified.

I was also angry.

From the moment I spoke to her, I made it clear that I could speak up and protest. In fact, I was PROTESTING, her interference so I could have easily spoken up and asked him to move if I had indeed needed to get in quickly. She didn't notice that I could say 'no' because she couldn't hear me say 'no' to her. How odd.

My voice was stolen and replaced by one that wasn't mine.

I've done that to others.

Never again.

One More Request

Well, folks, the last day for voting on the Canadian Blog Awards is tomorrow. Rolling Around In My Head is up for 'best overall' and 'best personal blog'. Our niece Shannon at Half Soled Boots is up for 'best blog post' and Lene (a reader) is up for the same award - check them out and please vote for one of them. Belinda is up for 'best religion and philosophy blog' with 'Whatever He Says' ... and if you are inclined a vote there wouldn't go astray. My chances for 'best overall' are very slim (why does 'fat chance' and 'slim chance' mean the same thing?) but I would love to see a disability blog take that one. It's never happened. So, your votes do count. I know it takes time but I'd appreciate you taking a moment and voting. Remember, though it's the Canadian Blog Awards, you do not have to be Canadian to vote! I won't be bothering you again, unless I get nominated again next year.

Today's post follows ...

Answering a Question

I think I had an 'ah ha' moment which answered a question I've been asking myself recently. Let me tell you what led up to it, then I'll tell you what it was. I was doing a training yesterday morning up near Davisville subway stop and, as that stop is wheelchair accessible, Joe and I decided just to subway up. This meant that I got to go in my power chair and thus it would be only the second time, ever, that I've presented to an audience in that chair. I was pleased at being able to move freely around while talking. So, in order to get to the realization, I've got to let you into my extremely private thoughts, so, get your boots on, it's going to be muddy.

So, we left and I started thinking, no that's not exact, worrying:

Worry Number One: While riding up to the subway station: "It's rush hour and there will be thousands of people on the subway, I've never travelled at rush hour before. I wonder if there will be room on for me on the platform. Anyone could accidentally hit my joystick and send me careening over the edge. Remember how when you were looking at pants for Joe in the Bay and the pants caught on the joystick and you'd dragged the whole display over and knocked over a mannequin before you untangled the pants, oh my gosh, you have to watch the joystick. People won't notice. What if I can't get on? What if there isn't room for me on the subway car? What if I can't get through the crowd to get on the train?"

By now, I'm at the train and on the platform.

Worry Number  Two: While getting on the train: "I have to get into position or my chair will roll, I have to back into the space in front of the door. Oh, no, there are people there, I'll have to ask them to move. Remember last time and the person got really pissed off when you asked them to move, what if they get pissed off again, I've got to hurry, the train is about to start moving. Oh, good, they were nice about it, the woman even smiled. OK, I'm in place. Oh, no. I've never gone north on the subway, I don't know which side the stations are on, what if I'm in the door where people need to get off? I'll be in the way. Oh, good I'm at the front of the train, I'll be able to see and move if necessary. Oh, no. I hope I don't have to move because there is no room. OK, Rosedale is on the other side. Ok, Summerhill is on the other side. I think I remember that St. Clair is in the middle so I'll be in the way, oh, no, oh, OK it's on the other side too. Davisville which side will Davisville be on. Oh, people are lining up for the stop across from me, it will be ok."

By now, I'm getting off at Davisville.

Worry Number Three: On the platform: "Where is the elevator, there are a bunch of doors going in, that's where everyone is going, I'll follow them. I don't see the wheelchair symbol, maybe it's not there. That woman told me that there was no elevator and shooed me away like a child, why do people talk to me like that. Remember the time the sales clerk told me that I shouldn't shop in the store unless I had my Mom or a staff with me? Oh, there is the wheelchair symbol. YIKES, it's a narrow passageway, drive carefully, carefully, carefully, carefully. Is it good in a man my age for my heart to beat so fast Icelanders could polka to it? Oh, there is the elevator. Oh. No. I didn't check the website to see if the elevator was down. What if it's down. I'll be late, I hate being late. Oh, the light came on when we pushed the button, that's a good sign. Here is the elevator. The door looks small, what if I can't fit ... oh, it's tight but I can get in."

By now, I'm on the street rolling towards where the presentation will happen.

Worry Number Four: Riding off to work: "What if the elevator goes down while I'm here. How will we get home. It's cold out and I can't ride all the way to the next stop. We should have brought the car. But I like taking the subway. Oh. No. We should have thought this through. If it goes down we're just stuck. Remember when we tried to go to the Ballet with Ruby and the elevator was down. That was a long ride. Oh, wait, they have two elevators, surely they won't both go down. We could just ride the other way until we find a stop where we can cross over. That will work."

I arrive at my destination.

My realization? The Question Answered?

I know why I'm tired all the time.

Passport Photos

It was a long day. I got home well after seven o'clock which made it over twelve hours since getting on the bus in the morning. A long, long day, full of things that needed to be done, things that I enjoy doing - true. It's just that there were too many things on only one day. It was actually dark out when I got in the car to come home.

Now, a long day for me, always means a long day for Joe too. He is there with me as I get on the bus and he's there at the office to pick me up at the end of the day. He has a lot on his agenda each day with planning travel and setting up trips and lectures, along with taking care of our own personal business as well. So, we were both tired getting in to the apartment.

Joe gets me to the apartment and then has to go back down and park the car underground. I typically sit at the computer and check the blog for comments (where is everyone?) and emails. Just as I reached for my glasses I was distracted by something on the computer screen and my glasses tumbled to the floor. For me, something on the floor might as well be in Lichtenstein. I looked at it, realized that I haven't had a passport to travel down there for years and years. I was going to have to ask Joe.

I knew he was tired. I knew, too, that he'd do it without comment or concern. He picks stuff up for me all the time. Which might explain why Joe has a slight Alemannic accent after a day when I've been very, very clumsy. I sat there and looked at the glasses.


I didn't want to have to ask him. I somehow just didn't want to need the glasses, didn't want to need his help. Not because he'd mind doing the chore. But sometimes, paradoxically asking for a chore to be done is more of a chore than doing the chore itself. Sometimes I think it's harder, way, way, harder to ask for help than to give it. So, Joe came in and I mentioned that I dropped my glasses. They were back in my hand seconds later.


There was something odd about them when I put them on, I checked, yep there was a passport stamp on the corner of them. I hope they had a lovely time down there in Lichtenstein.

The Scent of Prayer

I sat quietly for about five minutes.

Soaking in the atmosphere.

Feeling where I was.

I arrived just as the chapel sevice was ending. In the hallway, outside the sanctuary, I met two young people with intellectual disabilities. The young woman recognized me from having met a few years ago and we chatted. She introduced me to a shy young man who told me his name in a voice stitched with velvet. We talked briefly. They looked very much at peace, very much like they had just left worship. I said my farewells and entered in to where I would be presenting for the day.

I've presented in this room many times over the years and it's one of my favourite places to be. It's a beautiful room, it has a lovely mural on the back wall and a huge window overlooking a frozen pond. After being greeted and given what I needed to set up, I was left alone for a few minutes to gather my thoughts. Sitting in a room still filled with the spirit of worship, still scented with prayers that lingered, I felt a kind of wonder. Being here many times before and worshiping with people with intellectual disabilities, has left an indelible mark on me. Each time I enter I know I will leave with new memories and the room will mean something more, yet something different the next time I come in.

But this is the first time I was to teach immediately following a service of worship. This is the first time I was to teach just after having greeted people with disabilities whose prayers had been prayed in that space. I wondered what they prayed for. I wondered what they had said, with bowed heads, to their God. I wondered if their prayers, which are echos of the hopes of hearts, placed responsibilities on my shoulders. I was there to train those who provided care. I was there to challenge and change, to inform and inspire, to teach and be taught.

I was alone.

Yet I felt surrounded by the quiet voices of prayer.

Never has a room better prepared me for what was to happen next.

Book Club: International Day of Mourning and Memory theme

One of my regrets from last year was how the Rolling Around In My Head book club got lost. I had planned for us to have a day devoted to The Thousand Autumns of Jacob Zoet and I know a number of you read the book in advance of the book club happening. What with two deaths of two close friends within weeks of each other, and the resulting effect on my life, it just never happened. To be honest, one of the reasons it didn't happen is because I'm not a very good book reviewer. Whenever I try to do one I end up feeling like I'm in school and the work becomes drudgery. I had started doing these because I like to see how disability or the disability experience is used by writers of popular literature. I have been very, and surprisingly, affected by some of the books that I've read. I have a long list of books I recommend when asked by those starting disability book clubs of their own. I like supporting writers who incorporate disability into their stories and use that experience to broaden understanding. I also like the point of view of artists who aren't necessarily from the disability community. I have changed both practice and attitude from reading these stories. I have been powerfully convicted and motivated by some of the images that flash in my mind as the words pass my eyes. I think its a thing worth doing - discussing these books. So I felt that I let down you as readers and myself as blog host.

I still want the book club and I still want to participate. But what I've done is asked someone who is very, very, skilled at writing book reviews to come on board and do these for me. She has agreed. So I hope to have one of these at least three times a year. We are starting fresh this year with a book that I found incredible. I found myself dreaming about the story and the characters - I never do that. I think its because the experience is so real. More than that, the story really goes well with the 'International Day of Mourning and Memory' that we have coming up here on the blog. It's The Secret Scripture by Sebastian Barry. I can tell you for certain that the book club will be held on March 16th, two months from today.

Here's how to participate:

1) Sign up in the comment section

2) read the book, then do one of the next steps (or all of them)

3) write a review on your blog and have it post on March 16 and send me the link to be put on my blog

3a) read the review on my blog and leave a comment with your own review or reaction to the book

3b) form a local  disability book club and send a summary of the reaction to the book

Any and all of these work.

Again, I apologise for my failure to follow through last year and know that it won't happen this year. So get to book and get reading!

Today's post follows ...

By The Touch of Her Hand

I simply had to touch her hand.

Simply had to.

Without question, she had to be at least 50. At least. That meant that she would have been school age at a time when learning, as a possibility for people with intellectual disabilities, was just being considered. I am only a few years older than her and can testify that she, and others like her, were not in my school. Where they were, was a question I didn't ask. The existence of people with disabilities was kept, like societies dirty little secret, locked away. It shocks me, even now, the lack of outrage that greeted the realization that we had been lied to and deceived about the lives of our brothers, our sisters, our aunts, our uncles, our cousins, our neighbours. The passive acceptance that our personal history was affected by such towering bigotry, both astonishes and grieves me.

She wore a white blouse under a loose brown sweater. Around her neck she wore a necklace that glinted amber in the light. She had been sitting chatting with friends, revelation enough there, as the room filled in anticipation of an abuse prevention training session. That she had Down Syndrome was secondary to her name here, in a room full of people who knew her. Her laughter was free - a tribute to the fight for freedom that her life represented. She glanced over and noticed a line up of people at the front. Each person was signing in for the training. Some assisted by staff, some on their own in big, block letters, some with small neat printing.

Wanting to register herself, she told her friends that she was going to sign in. The line, by then, was long. But gradually she moved near the front. By now I was seated at the table where people were signing in. In a few minutes the workshop would begin and I would be using that table for my notes and my tea. I was getting set up. Joe was standing off to the side, finishing the preparations. I was double checking everything. There were going to be over 60 people there. I wanted to be sure there were no hitches.

Taking the pen comfortably in hand, she leaned down. In beautiful script, she wrote her name with lovely flourish. A genuine, freehand, cursive signature, flowed out of the pen and on to the paper. I saw it and immediately knew that there was a story behind that signature. I knew, instantly, that that signature had come at a cost.

It cost belief.

Some mother, some father, some family, someone had pried open an education system that denied the right to write to people with disabilities. Someone had yelled and screamed and, in so doing, pushed back the forces of bigotry and denial. During the time of her childhood, she would have known isolation and segregation and congregation. During the time of her childhood, she would have been excluded, been rejected, been turned away. During the time of her childhood, I too was a child. I never knew I never knew her. She did not walk the hallways of my school. She did not walk the streets of my town. She did not walk towards the future with expectation.

And yet here she was. A person with a signature. There was a miracle in her hands. She had an ability that would have been thought impossible. An ability that gives the lie to the idea of inability. An ability that challenges the thought that learning could not enter through the soul and leave traces in the fingers. An ability that most would assume she did not have.

She had.

I am blessed to live in the time that came after exclusion. I am blessed to be part of a movement that believes in possibility. I am blessed to have the opportunity to teach those believed incapable of learning.

But I am also blessed to have been offered her hand to shake, as she left the workshop. When she reached out to me, with the very hand with which she had signed her name, I took hold of the miracle. I touched magic.

And in that touch, was healing.

International Day of Mourning and Memory: Update

January 23rd was chosen as the date for 'The International Day of Mourning and Memory' because it was the day that Sandra Jensen, a woman with Down Syndrome, won her fight to recieve an tranplant from a hospital that had refused her because of her disability. It's a day to celebrate the courage of those who fight and to remember those who suffered 'valueless' status within society; those who lived what many refer to as 'forgotten lives' and died 'unmourned deaths'.  It is sad to note that Sandra's fight, though important in that it demonstrated the power of advocacy, continues to need to be fought. I urge you to read a post called Brick Walls and both leave a comment and follow the story to find out what action can be taken.

Today's post follows:

The Blackberry Bush

I don't know if she wants to be identified so let me just begin by saying a big 'thanks' to one of you lovely readers who has been emailing me questions and ideas for fixing my blogging problem. In her (your) last email some ideas for fixing the problem were suggested, I'm not going to try them tonight, I'm the kind that loses sleep over these things so I'll try first thing in the morning when I feel fresh. And trust me, that particular window is getting shorter and shorter as the years pass.

Onwards ...

A couple days ago I overheard a woman saying to her friend that she had left her Blackberry at home and felt 'Just utterly crippled without it.' Our eyes met just as she said it and she flustered an apology saying, as people always do when they mean what they say, 'That's not what I meant.' It was a brief moment, not really worthy of note or comment here. Certainly not the stuff of a full blog post.

Until today.

Joe and I went out, rushing a bit, on Saturday morning. On our way I asked him if he'd brought his phone. He hadn't. He asked if I brought mine. I hadn't. A few minutes later he asked me what time it was as we were worried about being late, I realized that I hadn't put on my watch either. No phones, no clocks, would we manage? When we got where we were going, I'm not going to tell you where and I'll tell you why I'm not telling you a bit later, we relaxed having got there in plenty of time.

We both started giggling at almost the same time. We felt like we were playing hooky from school. We felt like we did in those days of our youth when we snuck out of our parents houses at night. We felt like we'd ditched responsibilities and had hidden ourselves in plain sight. It was delicious. Lovely.

We had unhitched from the world and, unlike my non-disabled conversant who felt disabled without her phone, I felt completely free without mine. I didn't have an urge to check emails, or check blog comments, or check work communications ... I didn't go into withdrawal. It was just lovely.

So we had a hidden afternoon - completely hidden. And I have no desire, now, to undo that. It feels like reclaiming privacy and reestablishing boundaries. It feels like saying to the world - hey, back off, we're out and alone and loving it. We aren't, we decided, going to become that couple that sits beside each other in a restaurant texting people who aren't there about what they aren't doing with people who are there. Nope, we're going to still have things to say only to each other. We're going to be adults and go out alone every now and then.

A lovely private afternoon during which I felt like a rebellious child and an unencumbered adult all at the same time. Amazing.

I fully recommend it.

International Day of Mourning and Memory; January 23: Update

(video of a singer walking through the grounds and wards of an old institution, long closed. She sings of a woman, named Arlene who lived in that self same institution. Song is called, She Never Knew She Never Knew, written and sung by Dana Mase.)

Dear Readers: I am receiving many emails with ideas for these updates regarding the International Day of Mourning and Memory. I'm struggling with computer problems to keep these updates going and will do all in my power to keep everything happening on the blog. I ask that you help by promoting the day and getting the word out. I've heard from some organizations that are holding a moment of silence that day. Vita is looking at having one of our self advocates write her story of feelings about being institutionalized - her sorrow at lost years and lost friends. This we hope to share through the agency. Jon, an old friend, sent me this video which powerfully moved me and seemed to be an almost 'perfect' theme song for the day. I don't like the description of the song on YouTube saying it was about a woman 'wrongfully' institutionalized as if there are people 'rightly' locked away. Anyways, I found the words on line and hope I am not violating copyright. Please leave a comment on YouTube for the singer and the song. (today's post follows ... I really need help)


She Never Knew She Never Knew

She never knew about the tooth fairy
Or being tucked into bed by her daddy
She never knew about staying up all night long 
Talking to a girlfriend

She never knew about first kisses 
Or throwing pennies into wells and making wishes
She never knew that she never knew she never knew

Do you blame the mother that chose neglect or
Do you blame the teacher that decided to reject her
Do you blame the angel that failed to protect Arline

Oh Arline, Oh Arline

She never knew about Sunday mornings 
Waking-up late in the arms of her husband
She never knew what it’s like to dry a tear 
From the son, she never knew

She never knew what it’s like to help her
Daughter get dressed on the day of her wedding
She never knew what it’s like to hold a newborn grandchild.

Do you blame the mother that chose neglect or
Do you blame the teacher that decided to reject her
Do you blame the angel that failed to protect Arline

She was sent to live in the middle of nowhere 
Where all the misfits go that don’t fit in anywhere
Who pays the time for the crime against an innocent child
I’m afraid it’s Arline

Oh Arline

Bridge:
Send them away 
Pretend everything’s ok…
What’s been taken away
Can never be replaced

She was a little girl with dreams and smiles
Walked with a limp when she was only five 
Her mother couldn’t handle the shame 
She packed Arline sent her away


I met Arline at her group home
She’s 78 now and she lives all alone
She knits clothes for her dolls 
Who are, her family.

Too late to blame the mother that chose neglect 
Too late to blame the teacher that decided to reject her
Too late to blame the angel that failed to protect Arline

She was sent to live in the middle of nowhere 
Where all the misfits go that don’t fit in anywhere
Who pays the time for the crime against an innocent child
I’m afraid it’s Arline

Oh Arline, Oh Arline. 

Stuck

I should never try anything new. I hit a button on Blogger and now am having a lot of difficulty signing in. I've had to set up my laptop and go in that way. This new 'Google Chrome' which I just now installed on my home computer which was supposed to support the changes at Blogger now refuses to link to allow me to sign in or blog. YIKES.

I'm at the age where I find myself left behind all the time. I look at these devises that kids have wherein they can interact instantly and constantly, sending videos, sending text messages, and I just freeze. So, here I am, stuck. I have no where to turn and no one to ask. I don't want to have to switch to my laptop every time I want to write something here.

Oddly I made a joke of this a few weeks ago with someone with an intellectual disability. I said, 'I feel left behind,' and he said, 'Join the club.' We laughed, but I get it now, really get it.

I feel dumb.

I feel inadequate.

I act resentful towards those who use technology that I don't understand.

I find myself filled with a kind of rage at both myself for being so dim and at the computer for being so hard. I want to hit something.

The other day when explaining to someone that Joe is very nervous about using the computer to play a DVD in one of my classes, a young woman said, 'Oh, that's silly it's really easy.' I said to her, quickly because I was rushing, 'Don't say that, it's patronizing to tell someone who's genuinely fearful that their fear is silly.' I think she thought I was rude but I was serious.

I wonder how many times I've waved away someone's anxiety about trying something new because it's something easy for ME (and it's all about me). I wonder how many times I've been impatient with someone's frustration at trying to ... name it ... tie shoes, cook a meal, dial a phone number.

I say it LOUD.

I'm sorry.

Really sorry.

Cause right now I'm feeling dumb and anxious and I can't see a way out. I'm feeling angry and frustrated because I feel trapped by my own ineptitude. Somehow, now breaking something or hitting someone, makes sense.

I won't do it because I've been taught not to.

But I want to.

Now I've got to go back and try tuning it off and turning it on again, that will work I'm sure.

AAA

It's all part of a recruitment drive.

I'm a small part of a project that's has the radical goal of teaching abuse prevention training to abuse prevention trainers with intellectual disabilities. People with disabilities teaching people with disabilities how to stop abuse, report abuse and, even more important, how to keep themselves and others around them, safe. Much of the work is done now, the train the trainer curriculum is written, the curriculum to be trained is written ... now begins the job of interviewing people with disabilities who want to become trainers.

To encourage this, I've come into town to do the training a couple of times so that we could do a recruitment drive for people to apply to become trainers right after. Our hope was that having seen the training, they would understand exactly what it was that we wanted to teach them to do. So, we began with a smallish group in the morning and a largish group in the afternoon. At each training people participated well and seemed to be having fun learning. In the back of my mind I kept wondering if there would be interest in the group for people to become trainers.

There were as always, wonderful moments:

One woman came to the front, hesitantly, with every step she took I could see courage. She did a role play and nailed the question that followed. The group spontaneously burst into applause. Her smile broadened and tears filled her eyes at the acknowledgement. She whispered to me, 'I did good?' I said, 'Yeah, you did great!' She walked back to her seat a more confident woman. Now I believe that this woman gets a lot of acknowledgement and praise in her life from her care providers. I saw her with them. But I wonder if this is the first time she received acknowledgment as a person with the capacity to learn. It made her different.

If I may be so selfish as to put my own experience in here, I could choose a thousand others. The afternoon session had over 60 people in it. They were red hot as a group and laughed and applauded, cheered and were cheered. At one point in the afternoon I was in the middle of the group, I always have a broad aisle way set up allowing me to up and down the room, and everyone was laughing.. I slowly turned my chair in a 360 circle while talking and asking questions. For a moment I felt that wonderful embracing feeling of being dead center in community. It was joyous.

Then at the end of each, I spoke briefly about the project but then a self advocate involved in the project came forward to explain more about what we wanted to do and describe how to apply. Then, we waited. Each time a line up formed, a quiet, solemn line up. There was determination on those faces. They wanted to make a difference, they wanted to help out. They wanted, most of all, to be part of the solution.

And with that 'Advocates Against Abuse' is off and running ...