The Journey's Not Yet Done

We laughed.

I think that's what I'm going to most remember about yesterday. We went to visit a friend who is shortly about to lose her battle with cancer. A woman of immense courage and determination, she fought that disease with every ounce of her spirit. And though the fight cost her, she won many more battles than she lost.

I remember the precise moment that she told me. Joe and I were driving home from working in Toronto and she called. We chatted like we always did then she took a breath and, just as we were turning onto the ramp onto the Allan Expressway, she told me she had been diagnosed with a viscious and deadly form of cancer. The doctors had told her that the cancer typically killed 18 months from diagnosis. That was many years ago.

Many years of chemotherapy, many years of experimental treatments, many years of harsh regimes of hopeful drugs. And through it all she marched with a passion for living that was astonishing. Everyone around her kept giving up, kept telling her to give up but she never did. It seemed that she had stared her disease in the eye and said 'I am not afraid of you, I will not let you have me, I will not back down.' Where she got the stamina to fight, the ability to deal with round after round of chemo, the sheer determination to live a life of quality - I don't know.

So the week before Christmas when the doctors told her that there was nothing more to be done, nothing on the horizon ... it shocked us all. It had become painfully evident that her spirit was willing but her flesh was weak. We had planned to see her right away but she called and asked for some time, she was tired from years of fighting and she had to begin to rethink the future.

We went to see her yesterday. Tucked in on her couch she looked like a frail child. Until she smiled. She has always had a beautiful smile. And though we talked seriously about what is to come, we laughed. Often. Cancer still hadn't the ability to permeate her spirit. And, it never will.

Now here it is, New Years Eve, and I had planned (and even made notes for)a 'resolutions' blog. But I've been thinking about her ever since the visit. I've been remembering the fact that we laughed. In the midst of sorrow, we laughed. In the midst of grieving, we laughed.

After leaving her we met with other friends for tea. It was difficult, at first, to go from death's door to life's window. But these are good people and we chatted easily. One of them had brought something to share with us. It was a pouch that contained all the things that a woman with a developmental disability had loved and kept near her. This pouch made it out of an institution and into a community home. So many came out with less than they went in, it was amazing that someone had managed, through force of will, to keep what was hers.

We reverently opened the package to see what she had held so tightly onto. At first I was surprised that the pouch had nothing of her. Inside were things from her history, her family. Her parent's passports, a letter from a friend in the old country, a birth certificte, a death notice. But nothing had her name on it. She never tucked in there a single memento from her own life.

And of course not. She kept and cherished her ties to her family, her connections to others, the loose ends that she had so carefully braided together and then held on to. She collected what mattered. Her self is in there, closely bound to the ones that loved her.

I thought of my friend as we looked at this. I thought of the conversations we had just had. Her concerns were not for herself. But for her children, for her family, for her friends. It was like she had openned her heart and found her self through those that love her. She knows that she will die loved, she wants to ensure that those in her life will continue to live, loved.

In the end, dear and gentle readers, this is what I wish for you all next year. Another year of living, loved. Another year of collecting mementos of your life lived in relationship to others. Another year of weaving strong rope from life's loose ends.

Dave Does Disabilty 08

I am as captivated by them as many of you are, those year end lists. In the last few days I've read the 'top celebrity break ups' the 'top career comebacks' the 'best movies of the year' the 'top songs' the 'hottest celebrity pairings' ... I admit to it, shamefacedly. So I've decided to do a version of the same. I've never managed a top ten, so here are a dozen things done two at a time about the year.

Top Two Things in the News

1) More children are born with Down Syndrome than in previous years. More parents are making the decision to keep their babies (newspapers said 'in spite of') because of the diagnosis. This is a strong signal that something is going right and a cause for lots of bubbly to be openned.

2) Euthanasia becomes a big story again. The killing of Danny, the twenty some, footballer in England is a low point. Newly disabled and dealing with anger and grief over his life in a disabled body he becomes depressed and suicidal. Parents support his decision to die so he doesn't have to live a 'second class life'. Perhaps their view that he's gone from first to second class is part of the problem (but we're not allowed to say that). It is a chilling message to people with disabilities that social change isn't the answer to exclusion and segregation - death is. For awhile there you couldn't turn on the television without another story about the wonders of offing yourself.

Two Things that Prove The World's Gone Mad

1) A judge determines that a Grandfather and Two Uncles who have routinely raped a young girl with a disability will get suspended sentences so they can continue to care for her. If there is search for intellegent life in the universe, here is not the place to start.

2) Sarah Palin became a poster woman for the disability rights movement because she had a baby with a disability. Can someone explain this one to me. I was constantly lost as to her qualifications to speak to the issues of disability simply because she had a months old child with Down Syndrome. I'll retire to bedlam.

Two Things that Held Out Hope

1) Tropic Thunder and it's disphobic use of language and it's demeaning portrayal of someone with a disability did not go quietly into the theatres. People got mad. It's like for a second the disability community set down petty squabbles and stood together and said, loudly enough for Hollywood to hear 'Enough'. This blog took part in that protest and got some of the fallout from the 'get a sense of humour crowd'. I was so proud that we didn't simply tuck tail and run.

2) The Royal Ontario Museum hosted a small exhibit on the history of disability. While the exhibit itself lacked bite and it seemed to strive to be 'nice' ... the fact that it existed at all was proof that there is a gradual and grudging acceptance of the concept of a 'disability community' in the halls of academia.

Two Things From The World of Books

Edward Sawtelle was published to great success this year. A primary character with a disability, and whose disability is ever present from first to last, exists in a book without disability as a theme. Now that's an interesting and refreshing concept.

Anarchy and Old Dogs continues a series of books set in Laos wherein one of the main characters is a man with Down Syndrome who is the assistant to the coroner. Even though 'Anarchy' was published this year, it's best to start with 'A Coroner's Lunch' the first in the series. Though he is often treated by others with disrespect, he's always treated by the author and his team with great respect. Long Live Mr. Gueng.

Two Big Moments from My Career

1) I lectured in the Royal Concert Hall in Glasgow! A long way from church basements in Ontario. We had stage hands help us set up and I was on the prettiest stage with the nicest backdrop. I had butterflies the size of eagles flapping about my gut (yes, I know, at least there's room) but the nerves only served to give me energy and I ended up having a wonderful time.

2) The NADD conference in Niagara Falls, for personal reasons, was a huge moment in my career this year. I was asked to speak on a new topic, 'Trauma'. I wrote a new keynote and set my self the task of delivering it with the passion it deserved. I don't remember much of the speech, but I remember the elation of a new talk given well. It was an important moment where I needed to do well.

Two Big Moments from My Work

1) Working with Manuela on the first ever presentation of the 'Reduce Abuse' project within Vita and seeing, laid out on paper how much work had been accomplished, how far we'd come, and how courage infused the process. Big things will come of this next year, but to see the groundwork done and knowing what it meant brought tears to my eyes.

2) Seeing real growth and development in those I supervise. From anxious nervous applicants to strong teachers and advocates - it's an amazing journey. I never really got supervision before and never put much energy into it - a folly of youth. Having the opportunity to be part of someone else's journey, to shape how a team approaches things, to develop an ethic in others - wow - it's another way to immortality.

Well, that's it. My take on a year. I'm wondering what others thought the high and low points were. Please leave your lists or items in the comment section.

(to those who saw the Sex in Liverpool post and are wondering what happened to it. it published accidentally, I wrote it for fun a long while back and just gave it a post date months in the future ... oops the day came and I was surprised to see it on ... I may repost later, but I'd planned this one for the day.)

Life Lessons

In the quiet of a winter evening, sitting having tea on the couch, it comes back to me. That moment I was left, on a dark freezing cold morning, outside my office by a WheelTrans driver who was deaf to my pleas not to be left alone. Like all traumatic incidents, it hasn't left me and I don't have the power to just let it go. The memory visits me at inopportune times - but this time is a good one as it's quiet and I have time to think.

I realized, for the first time really the reasons why people with disabilities are reluctant to report abuse. Unless the research is wildly wrong, there is a lot more abuse than there is abuse reporting. I've wondered about this, academically, over the years. But now, having been the victim of an abusive act by a care provider. I understand much more deeply the motivations to keep silent, to just let it go. I grabbed a pen and quickly jotted down the list.

1) Terror and fear of reprisals. The very next morning after I had been left in the cold and I'd called in to complain, I was due for another ride on the same transit system. The computer called and told me two things, that I'd be picked up just after 8 and that I'd be picked up by the same company who's driver had let me off in the cold. As I was dressing on the bed I began to panic. My sock hung from my hand and I was frozen in fear. Joe came in and asked what was wrong. I told him that I was afraid that the driver who came today might be a friend of the other driver, that I had to get into a van alone with him and wouldn't know if I was safe until I got there. Do they all know each other these drivers? Are they all gunning for me because of my complaint against one of their own? Joe said things meant to assure me, they didn't.

2) Misplaced empathy. For the first several days after this happened I felt dreadful. I didn't want this guy to lose his job, I asked the WheelTrans Customer Care not to fire him. It's Christmastime for heaven's sake. He probably has a family. I felt incredible empathy for this guy and what he'd be going through because I called to complain. Only later I realized ... he. left. me. out. in. the. freezing. cold. and. felt. no. empathy. for. me. or. my. concern. that. I. might. die. I was feeling empathy for a man who felt no empathy for me. I probably worried more about him than he did about me sitting out there in the cold. The victim is NOT responsible for consequences that befall the victimizeer. That's a huge chunk of learning right there.

3) Shame and Self Blame. How could I have gotten myself into that situation? Many people I talked to said things like, 'I just would have refused to get out of the van' or 'I would always make sure I had a cell phone' or 'Why didn't you have a key for the office'. All these questions have rung in my mind like a bell tolling over the grave of my personal power and my personal effectiveness in the world. It wouldn't have happened to others because others are more capable of living my life than I am. It's easy to say 'I would have refused to get out' but when the driver isn't hearing you and pulls out your chair and is insisting you get out ... the role of obedient cripple is easy to fall into. I know about protest. I know about making noise. But that's Dave Hingsburger. I wasn't Dave Hingsburger, I was an anonymous passenger on a bus. I didn't have Dave's power. (I hope that makes sense to you because it certainly does to me ... now.) And as to the phone and the key, how could I plan for this to happen, until it did, it was unthinkable. Yes, I now have a key. Yes, I now have a plan. But these things come afterwards, not before.

4) People don't take abuse of people with disabilities all that seriously. The way I look at it, this guy coulda killed me. That morning was freezing cold. I was wearing sandels not shoes (I was going into the van and into the building, I didn't think I needed shoes). I wear a sweater not a coat. I wear gloves that are meant for wheelchair pushing not for warmth. Yet when I've told people, they make the right noises about what happened being horrible but I can tell from their tone that they think I'm being a bit 'over the top' about it. I don't mean to be critical of readers of this blog, who are by and large a wonderful lot, but even when I blogged about being left out in the cold on a dark winter morning. The comments devolved into a series of questions about the nature of my disability - like the topic of being disregarded by a care provider and dumped into a cold parking lot was barely interesting enough for a comment. If you check you will see that 6 comments were about the incident with the driver and 9 comments were about my weight, my disability and a discussion thereof ... I wanted to scream: What is it about the pain and fears of those with disabilities that make them seem less important than the pain and fears of other 'real' people? (Note: I like all comments and wouldn't comment on comments unless they relate to the point being made. So please don't be worried about being picked on for comments, I love them - as do all blog writers.)

So I understand things now I didn't before. I've been lecturing and teaching on this topic for along time.

But now I understand in new ways.

I'm pulling out my lecture note today, and making changes.

A Real Jewel

"The worst thing about being a woman and having cerebral palsy is plucking your eyebrows. That's how I got pierced ears."

I found that quote by Geri Jewell a couple of years ago when embarking on a big project which is moving slowly towards completion. I found it tremendously funny and quiet affirming. I use a lot of humour in my presentations and like taking the micky out of attitudes and situations. There is much that is difficult in life but I refuse to be willfully woeful.

One of the most important books that I ever read was 'Man's Search for Meaning' by Viktor Frankl in which he documents his time in a concentration camp and his observations about life, about power and about attitude. He acknowledged that others could control the 'outside' of his life but that he alone controled the 'inside' of his life. That he could chose to find purpose and meaning in amongst extreme oppression and violence was an indicator of the breathtaking fact that we belong, ultimately only to ourselves. No one can own us and no one can claim us. We are not our disability, our gender, our race ... we are simply and powerfully ourselves and have the most powerful choice possible - how we think, what attitude we strike, where we find purpose. Frankl's book, never out of print, is always nearby.

So when Joe and I sat down yesterday to begin watching the DVD box set of Deadwood and Geri Jewell came on, playing a char woman in a brothel, I was surprised and pleased to see her in the role. Referred to as the gimp and punished for dragging her leg, the character bears up playing at servitude but with strength in the eyes. Watching her, I remembered this quote from her and, of course, smiled. I knew that Geri's life had been a difficult one, she was the first person with a disability to have a recurring role on a television programme and was a respected stand up comedian. But work didn't fly to her and she faced many hardships in her long career. I didn't know that she was in Deadwood and it was wonderful to see her and to be reminded of the incredible talent that she was.

Seeing her in a serious role made me think a little differently about her. People get stereotyped in my mind - Geri Jewell is a comedienne and therefore when I think of her I think funny. I get this in a limited way too. I was doing a workshop in England only a few weeks ago and one agency wouldn't send their staff because I was the 'sex' guy ... even though I wasn't speaking on sex. OK, people get a view of you and it can be hard to break.

So I went on to the computer and popped around to find something more about Geri and I found a new quote. One that I'm putting in my memory banks. It is, of course, relentlessly optimistic and positive as many of these kinds of quotes are ... but it does give another view of Geri and a sense of how she personally controls the inner's response to the outer.

Smile at least 20 times a day, laugh at least 15 times a day, and have faith 25 hours a day! Go forward in your lives and fear less...

As we move ever close to New Year's eve when the dreaded tradition of making resolutions begins ... I've got one squireled away.

Thanks, Geri ... for both these quotes but also for a life lived with integrity and for a talent yet completely discovered.

The Bitter From The Sweet

For the past several days we've had the inconvienience of having to go downstairs to the car in the underground parking lot. From elevator to lot isn't accessible in that it involves one step up and one step down. Maybe not much of a barrier to you, but to me, it's enormous. But because of the snow and the construction at the front of the building that's what we've been doing.

At the step I get out of my wheelchair, brace myself against both walls with arms outstretched and then lift one foot and them pull myself up. It doesn't sound arduous but it is. Not so much the energy but the panic that comes from a fear of falling is almost overwhelming. I feel a sense of real accomplishment when I get back into the chair and roll over to the car.

But they've cleared out the front of the building during the holidays and our driveway is now in full working order. I pulled off the elevator into the lobby to wait while Joe went down to get the car and pull round. I chatted with several people who came into the building. It almost seemed like all the youngsters in the building were away somewhere as everyone seemed quite elderly and many used canes or walkers themselves.

Everyone enquired about holidays and exchanged delighted remarks about how wonderful they had been and continue to be. One woman stopped to talk to me, I think she was both chatty and pleased to be able to stop and catch her breath for a moment. She suggested that going out in the wheelchair was 'folly' until I explained to her that I was waiting for a car. When the elevator came she bid me farewell and thanked me for a pleasant chat.

When she got on the elevator I heard her saying hello to a woman who was coming up from doing laundry in the basement. As the door closed she said, 'That big man in the wheelchair, you know he's not at all bitter!'

I think it's odd that people are surprised at the lack of bitterness in a person with a disability. It is my experience, and I know that this is perhaps biased by the fact that it is my experience, that people with disabilities tend not to be very bitter people at all. I find bitterness more often in a certain type of soul not a in a different type of body.

Years ago I had a friend who became increasingly bitter as my career started to take off and I was being invited to speak and to publish more and more often. He couldn't understand why he, a handsome thin man, was being passed over in his work while I was flourishing in mine. He felt, somehow, that I needed to be 'punished' for my weight and for my decidedly unfashionable sense of fashion.

Then too, I met a woman who was very successful - in the eyes of the world. Yet privately she was bitter and angry. She felt every possible slight. Looked for ill will behind every compliment. Looked for mockery in every welcoming smile. She could look at beauty and see only competition. She could not bite into her life for fear of poison.

Bitterness and regret are disabling conditions, much more so than the necessity of a wheelchair or the use of a communication board. Bitterness and regret wash colour out of the world, taste out of your mouth and pleasure out of your skin. Bitterness and regret are habitual disabilities that reinforce themselves, they take moments and twist them into horrible shapes, they take expectations and form them into threats, they feed on fear and feast on terror.

I don't know what the old woman expected to find buried in her conversation with me, but I'm glad that when she expected bitter - she tasted sweet. It means that I've lived, successfully, through another year.

Boycotting Chewing the Fat

A Christmas Message via email:

I've been very angry since reading your post about your Christmas tree. I read Chewihg the Fat because it is a disability blog and I hope to learn more about disability and the experience of disability. I overlook the fact that you are homosexual which is fairly easy because you don't shove it in our faces at every opportuntity. But I thought that blog about the tree and your relationship with Joe was close to obscene and it angered me.

You need to put some kind of faggot warning on content that is high in sin and depravity. You have a lot of readers who come from faith backgrounds and we read you because we believe that God wants us to be loving towards the person who is homosexual even though we hate their sin. In those kind of posts it's clear that the appropriate response is to hate both sinner and sin.

I have a several other friends who read your blog and we have decided that if you don't apologize for your faggy posts and promise to limit your blog to blogs about disability, we are going to begin a Christian boycott of Chewing the Fat. I've seen you stand up against things which offend you, well, we will do the same.

If you choose, you may print my email for all to read. Please keep my name off the email however. I don't want hate mail from the homo lovers on your blog.

Will you promise to focus on disability and leave out any blogs that talk about your sick and dependant relationship on another man? You say you are Christian, will you repent and ask Jesus back into your life?

***

What a thing to get Christmas day. It came in around 5 and I've kept it from Joe and our friends - they didn't need this kind of thing on Christmas day. I kept trying to picture someone sitting down and writing this on Christmas day. Who had time on Christmas day to send out threatening emails? Doesn't she have family obligations? Frinds to entertain? Hate to grow in pots?

I was going to just ignore this email and then I wondered how widespread was this discomforture about posts that include loving reference to Joe. I fear no boycott, this isn't a blog that makes money, nor is it a blog that concerns itself with cultivating a huge following. I just wanted a blog to share the experience of disability within my life, and in this case that would be a gay life.

I don't actually see this blog as a gay blog. I don't focus on those issues. I don't dwell on politics from the gay community. In the disputes between the gay community and the disability community - I have uniformly been on the disabiltiy side of the equation. But even though it's not a gay blog, it's written about gay life so it will have gay content.

A friend of mine has a Christian blog, she writes about faith but also occasionally writes about her husband and family. I don't shake my head and say, 'I wish she would stay way from the heterosexual aspects of her life and stick with faith and prayer.' Faith and prayer are about family. So, too, is disability.

We are what we are in relationship to others. It's in our relationship to others that we discover what our faith means. It's in relationship to others we see how our disability is interpreted. One cannot write about faith, about disability, without talking about one's private life in some way. Heck, you can't even write a cooking blog without mention of the people who eat your food.

It goes without saying, I will not apologize. I am who God made me, a powerful statement from a man in a wheelchair. I am who God made me, a controversial statement made by a gay man.

I am who God made me - take it up with him if you dare.

If you are going to join this boycott please have the courage to leave your names in the comment section so I know how many readers are going. If you don't wish to leave your name, just sign in under anonymous and leave a message.

Farewell those who leave.

Thankyou those who stay.

To Glen, Wherever You Are

Glen was a guy who I met when I worked in a sheltered workshop many, many moons ago. If you saw him sitting on a subway you'd think he was an accountant. He dressed conservatively and spoke quietly. Every now and then he'd out with something profound and deep. I've written here on the blog before about Glen, about the time he said 'The years go fast, it's the days that take a long time.' Everyone of us learned to listen carefully when Glen spoke because what came was often a delightful surprise.

As I was sitting here erasing attempt after attempt for something profound to write today, I realized that what I work for came easily for Glen.

He said something about Christmas. We were approaching the season and I asked him what he liked about Christmas. I knew that Glen and his family were church goers and I knew that Glen, himself, had a deep faith. I guessed that he wouldn't mention packages and thought he'd mention something about the birth.

But he didn't.

He said, 'Christmas is the day that it doesn't matter.'

Try as I might, I couldn't get him to elaborate what he meant. I wanted to know what 'it' means. I wanted to know what he was saying. But Glen would never really explain anything, he'd just look at you and smile.

I am the first up as I am every morning. But this morning is different. The Christmas tree was left on over night as is our annual tradition, so I bask in it's glow. The whole city has fallen into silence. No traffic, no revelers, no fights in the alley. It's just quiet.

In that quiet I realized, maybe for the first time, what Glen was saying. And he's right, of course.

Christmas is the day that it doesn't matter.

Amen.

My Tannenbalm

Here it is Christmas Eve and I'm wanting to share something with you. Joe and I really aren't about things and stuff although we have many things and lots of stuff. But one of the things that I truly love we only see for a few weeks a year. I'd like to take you on a tour through the branches and give you a glimpse of our life.

This probably looks like an ordinary Christmas tree to you, but a picture can fool you. What you see before you is a history of my relationship with Joe. We do not take photographs (thus all these pictures have the distinct air of amateurs) and thus we do not have an real chronicle of our life and our travels, well except for this tree.

It sort of started with this ornament. It was given to us by our adopted dad, Ron Shearer. Many remember Ron's partner, George Hislop, but for those of us lucky to have been part of the lives of these two men - Ronnie was a powerful force in and of himself. He worked for a Christmas Decorations company and sometimes brought us copies of ornaments that were attempted but not then adopted for use. The blue ornament in this picture was one of those. We have many such Ron ornaments. Other people, over the years, have given us ornaments. So we look at the tree and see our journey and our friendships.

Then we went to Boston, back when we were boys, and I had just begun to work with Behaviour Management Services as a consultant. We were there for a TASH conference, Joe came along and we snuck away to do Boston things and see Boston sights. This was the first big conference I ever attended and I couldn't get over having someone pay for my flights and hotel room - for someone to pay for me to attend sessions and learn stuff. I was awestruck. I never dreamed I'd speak at a conference or even, years later, keynote this very conference. But, one evening, we were going through shops on a small side street. Snow had fallen and Boston looked beautiful. One of the shops had a beautiful ornament that we both fell in love with. It cost $30.00 which was an outrageous amount of money. But we decided that it would be a good souviener of our trip and the conference. We did not yet know that the beginnings of a tradition was being borne.

I was invited to come down to New York state to speak at a conference. I was a brand new speaker breaking onto the scene. We drove through a town called Elmira and stopped for lunch. As I'm a dedicated shopper when I saw a small gifty style store I wanted to go in. But it was Joe who discovered the Teddy Bear lights. He loved them and bought them for our tree. Over the years he's picked up vegetable lights, cow lights, Betty Boop lights, fruit lights - and the tree is covered in both ornaments that hang and ornaments that glow. He can tell you each place he's found the lights and is proud of every string.

Going to Acoma was one of the high points in my life. I had been there once, alone, and wanted to take Joe there to see this incredible place not far outside of Albuqurque. Acoma is the site of one of my big lecture stories and is a place of incredibly fond memory. Sitting on a mesa overlooking desert on all sides, Acoma is the longest ongoing inhabited settlement in the United States. As we wandered through an artisan was sitting painting tree ornaments. I stopped and spoke to her. Even though she typically didn't sell from her home she saw how much I loved her work and she let me buy it from her there. By now our tradition of buying a Christmas ornament in every city or town we went to was firmly established. Even so, this one from Acoma is particularly special.

This star has huge significance to me. It was the first that I bought after becoming a wheelchair user. I was terrified that, now in a wheelchair, my entire life would change, that I would no longer travel and no longer lecture. After leaving the lecture site we stopped for tea in one of those cute tea places that dot the landscape. They sold a few artsy kind of things and I saw this star and fell in love with it. The audience had made me feel like a star that day, a star undiminshed by sitting down - so it had real meaning for me. It meant that my life would continue, that disability was just a new wrinkle in old fabric. Everything would be ok. I love this star because it demonstrated to me that the tradition continues - that I could continue to expect a lifetime of expectations.

Speaking of stars, Joe and I were always really unhappy with our tree top. We had the 'holy whore' for a number of years ... she was supposed to be an angel but she was painted such that it looked as if she wore layers of gaudy make-up and we dubbed her thusly. Then we got a star with lights that changed colours and it just seemed, well, tacky. On a trip to England I was rolling down an aisle full of decorations at a Tescos and suddenly I saw this star. It looked like it had been designed by Dr. Seuss and seemed like it would be a perfect addition to the tree. I grabbed it right away and showed it with pride to Joe, who took a second to 'get it' and then 'got it'. We both think it's the perfect topper to the tree.

The whole tree is covered with people and places. Joan and Robert and Alfred and Ruth and Lisa and Ian and Marge .... Los Angeles, Glasgow, New York, Vancouver, London ... they're all there. Our memories on each branch, a journey through a life of purpose and a life shared. No, it's not a photo album and no, no one really understands it but us ... but that's ok. The gifts under the tree don't match the gift of the tree ... the history of lifetime spent in love.

Survey Says

I was asked an odd question by a student with a microphone at the local mall. He was a charming kid (I can't believe that I'm old enough to consider a 20 year old a child)and was doing some kind of project for a psychology class at university. I remembered, immediately, doing a study whereby people waiting for an experiment had a male or a female walk by and spill computer cards all over the floor. We measured who they helped and what the response time was. We all knew that women would get helped more often and more quickly but a research paper is a research paper. All that just to say that when he approached and asked to do an interview for research purposes, I said OK.

Not knowing what to expect, I followed him to a little space created by two pillars and he set his tape recorder up. He said the date and time into the tape and then asked me what I wished for in the world for Christmas as a man with a disability. The question took me aback. I didn't answer him, I asked him a question ... What is this really about? He told me that he was talking to a variety of people from different minority groups and he wanted to see if there was a 'universal' wish from people who were not part of the dominant social group (I've struggled to remember the phrase he used and can't quite get it but those three words are as close as I could come). I asked him to assure me that this wasn't some weird kind of Scientology thing and he assured me that it was not.

I asked him if I could have time. He said that I could but didn't turn off the tape. I asked him why and he said that he would just time the 'think time' later rather than try to jot it down now. As someone who loses pieces of paper I understood. I thought for a bit and then this is a summary of what I said ...

"My first response is to make some kind of joke but if I had to seriously answer the question about what I would wish for the world as a person with a disability. I'd like it if every single person was born with a ramped mind. I'd be thrilled if people were created with minds that were accessible and opinions that were malleable. Most people seem to simply spend a lifetime confirming preexisting bias' and firmly gripped belief systems - minds that were constantly able to allow in new ideas and new information would be wonderful. I think that this would benefit people with disabilities in huge ways. An accessible mind would lead to an accessible world. People would be able to see the benefits of universal design. People would understand the appropriateness of diversity in the classroom. People would suddenly 'get' the concept of 'all'. I find arriving at a business only to have stairs block my way incredibly frustrating but I find it even more upsetting to talk to someone who's mind isn't open even to idea of equity and equality. People who look at me and see 'fat' or 'crippled' or 'gay' and then only hear my words through that filter - they'd be changed. And me, too, I'd be changed. I have difficulty hearing some things too, my mind isn't open to all - and I won't even consider the arguments on the 'other' side. I'd be a bigger person and a wiser person if my mind was ramped. So my wish this Christmas is that we all wake up on Christmas morning with our mind's ramped, our hearts made accessible and our souls open - that would be a Christmas day to remember."

When I finished, he looked at me and asked if that was all, I told him that it was. He shut off the machine. I asked him what others have said. He said that he was nearly done and that everyone he'd asked had talked about attitude and prejudices, about openness and opportunity ... that I was the first person with a disability he'd asked. He said that he didn't even think to ask people with disabilities but as he saw me pushing myself in the mall he realized that he had limited his definition of diversity and that was an odd error to make. He said he would try and get another two or three people with disabilities and then he'd be nearly done.

As I began to push away he called out, "I promise to keep my mind ramped for as long as I live!"

Well it's going to be a Merry Christmas.

Rudolph the Brown Nosed Reindeer

Then all the reindeer loved him ...

I heard "Rudolph" playing over the mall speakers as we sat in the food court having a bite of lunch. While the song really doesn't bear thinking deeply about, I couldn't help but remember how much I envied Rudolph as a child and then realize how much I kind of dislike him as an adult. Well, not him exactly but what he and the song represent.

So here we have this reindeer with a very shiny nose. All of the other reindeer used to laugh and call him names. They never let poor Rudolph play in any reindeer games. OK, I totally get all this. Those with differences are barely tolerated in a society that worships sameness. Where there is tolerance it is often grudging and meanly given. I don't have a real positive view of the community ... I think it's full of bigots and mean people. The human equivilant of Rudolph ... would be treated with the same scorn and rejection, I'm sure of it.

I know you all think I'm being too harsh, but there it is. Up until here in the song, I'm OK. It's a song about bullies bullying someone different. It happens. Often. Acknowledging it is kind of cool, talking about it is even better. Reindeer with red noses get the poopy end of the social stick.

But then, because of one foggy Christmas eve, Santa came to say, "Rudolph with your nose so bright, won't you guide my sleigh tonight". Yeah, now Rudolph is like one of those cool kids with mutant powers who attend that 'special school' for future X men and women. Rudolph's difference SERVES A PURPOSE ... and Santa, like the teacher who hears kids being called 'retard' but can't be bothered to get off their ass and do something about it ... figures - hey I can USE this difference. It can get me out of a tight spot.

So Rudolph becomes beloved.

Well that's where it ends for me. Shit. Damn. Why couldn't Rudolph just be valued because he's Rudolph, red nose and all? Why couldn't Rudolph just be seen as an equal even though different? Why did Rudolph have to 'save the planet' just to get a friend or two?

Come on, if there's a kid in a wheelchair out there called Rudolph ... you can bet that he is wishing that somehow magically his nose would turn red and then ... all of the other kids would love him. But it won't and they won't.

Our cause is about the creation of a world of welcome for difference ... where everyone plays reindeer games.

Monsters

Even though my birthday is today, we celebrated yesterday with cake and cards in Belleville - watching two year old Ruby tuck into my birthday cake was a gift in and of itself. As my birthday is close to Christmas, we also celebrated the birth of that other guy with Joseph and his Dad and Ruby's mom Marissa. After the cake, Ruby almost vibrated as you could see sugar take human form. She would run from room to room through the door that connected the two hotel rooms shreiking with laughter.

At one point she came up to Joe and asked, "Is there a monster in the room?" Joe looked around seriously and said, "No, there are no monsters here." She then went and peeked in the other room and came back and asked, "Is there monster's there?" Joe said, seriously again, "No, we don't let monsters in here." You could see the effect of these words, assurances on her. She relaxed into space that she knew was safe. The monsters had been banished by Joe's words and calm manner.

As I watched her run around the room in delighted abandon, as she cavorted with cake energy and twirled in her new Christmas dress it was as if she was floating in the knowledge that she was surrounded by those who watched out for monsters, those who would keep the monsters at bay. I wished, right then, that it would always be this easy. That all her monsters would be subject to the love of her parents and the care of those around her. That all her monsters would be banished by the kind words of a man like Joe. That her safety would be assured and her joy undiminished.

But she is yet to turn three and the world is full of real monsters, real dangers and real treachery. Kind words and watchful parents will not keep these at bay. She has a difficult world that she will need to navigate. I know that.

So I'm glad that today we can say 'not yet, now now' to dangers. I'm pleased to be here in her world, a world of pure joy and complete safety. I feel blessed with the power over her monsters today and maybe tomorrow.

"Is there a monster in the room?"

That's a question that I need to ask more often.

"Is there a monster in the room?"

Not today Ruby, not tomorrow, but one day you will be more powerful than monsters. One day you will be your own guardian. One day you will assure some little child that the world is safe.

But most of all, I'm glad you learned from us today, on my birthday, that kind words and gentle reassurance have power over monsters.

taken aback

I'm going to be harshly honest, I was taken aback by the tone of the question, in yesterday's comments, regarding my disability. Perhaps because I'm tired of everyone associating everything to my weight. People assume I hate myself. That I ate myself into a wheelchair. That my weight is willful and my disability optional. I'm sorry but this all just pisses me off.

First, if my disability was related to my weight, why would that matter? Disability is disability. If you are in a wheelchair because you are a jock and you jumped into a creek and hit your head on a rock - no one says 'you only have yourself to blame'. Disability isn't YOUR club, it's OUR club, so stop watching the door. But ask yourself, why do you need to know, and what difference would the answer have made? If it would make a difference ... then there is prejudice and bigotry in the room.

Second, not that it matters at all, but my disability in fact has nothing to do with my weight, my diabetes or any complications thereof. I have chosen NOT to discuss the nature of my disability with anyone other than my doctors and Joe. It's none of anyone's business. If that leaves you scratching your head because I write a public and personal blog about disability, so be it. I don't feel that I owe you every part of my life, every part of my experience, every bit of information. I keep what's mine, mine.

I have always believed and fought for the right to privacy for people with disabilities. I was one of the first people to publish on this in journals, I was one of the first people to lecture on the necessity of privacy, I was one of the originators of the concepts of 'privacy as a right' for people with disabilities. I believe that we all have corners of our lives that we don't want people prying into. I believe that we all have things that we share with none. This doesn't make us secretive nor sly ... it just makes us human.

I know that curiosity is also part of what makes us human. As my friend Ruth used to say, "I might be naturally curious as to the size of your husband's dick, but goodness me I'd never ask."

Perhaps one day I'll write about the circumstances that led up to my life in a wheelchair, perhaps not. This is under my control and only my control. What's mine is mine, what's your is yours ... and what we agree is ours should be joyously shared. So, as it's my blog and my fingers doing the typing I'm the one setting the parameters here.

Yes, I'm fat.

Yes, I'm disabled.

That they are both true, doesn't make them one truth.

Cold

It began, as most things do, mundanely. A phone call. We were driving home from work and I was attempting to book a ride on Wheel Trans the following morning. The automated system was unable to accommodate me for my request to arrive at 8:45 so I put myself on a wait list. A couple of hours later a computer called me back and told me that a ride had been found and that I would be picked up between 7 and half past for an arrival at 8:15. I accepted the ride. Somewhere in the evening they called again and left a message which we retrieved in the morning saying that the van would be here at 7 for a 7:45 arrival.

That time is too early as the building would be locked and I had no way in. We went down to talk to the transport guy, who'd arrived ten minutes early, and told him that it was too early, he nodded and loaded me in. Before the door closed I said, 'I'm worried about getting there too early,' he said that it would be OK. We dropped off the other fellow on the van and then pulled into my office parking lot at just half past seven. He tried the door, it was locked. I told him that I didn't want to wait out in the cold. He pulled out the ramp. I told him that I had very poor circulation and was afraid to sit in the cold for a prolonged period. He got my chair out. I emphasized that I was afraid for my health, perhaps even my life, if I was left in the freezing winter cold. He said, 'I wish I could sit with you but I've got others to pick up.' I told him that I was going to call Wheel Trans to complain about this, he told me that calling was a good idea.

Only a few minutes sitting outside the door and I'm freezing cold. It's below 0, the wind is whipping round the parking lot, my eyes are watering and my tears are freezing to my cheek. Joe had made me a thermos of tea so I poured hot water into my sippy cup and let it warm my hands. My gloves are made for wheelchair pushing, not for warmth, and my hands were glad of the hot tea. Every car that drove by the parking lot I scanned to see if it were someone arriving at work early. Every time the bus pulled up on Weston Road, I looked to see if someone was coming to rescue me. A half hour later, I am frozen through.

A few minutes later Manuela drove in, her son had wanted to use her car for the day so she was being dropped off early. She let me into the building. I rode up the elevator, feeling the warmth in the air and wondering when it would begin to penetrate the ice in my veins. I was cold. Really, really cold.

A few minutes later I am on the phone with Wheel Trans. The 'customer service' woman berates me for taking the ride, said it was all my fault, said it wasn't up to the driver to advise me about times, I was the one who booked the trip. I said, 'YOU ARE DEFENDING A DRIVER DROPPING OF A VULNERABLE PERSON IN A WHEELCHAIR OUTSIDE IN THE FREEZING COLD. I didn't like referring to myself that way but in fact that's what it was. She offered for me to talk to a supervisor. I left a message.

I expected a call back quickly. It didn't come. I called again just after 11 and ended up telling the story again, this time to a horrified service representative who said she would personally go get a supervisor. I had two complaints, being dropped off in the freezing cold against my will and being treated coldly and dismissively by their 'customer service' representative. She came back, voice full of apology, the supervisors were out. She assured me they could call me back.

They called just after our office Christmas, oops, Seasonal gathering. I was in full good spirits. The warmth of the gathering and my recognition about how much I like working with these people had taken the edge of nearly freezing to death in the morning. I spoke with two of the supervisors who were clearly upset at both the incident and how it had been handled. I am 55 years old and know when I'm being 'managed' and nothing pisses me off more than being 'managed'. I got that these two guys got the seriousness of the situation. They told me what they were going to do to deal with the situation now and what they were going to do to assure it wouldn't happen again.

All I wanted was for someone to care about what happened. All I wanted was to be taken seriously. That's what I got. And more.

To be disabled means, almost automatically, to be in the hands of care providers. To be in a position where one's trust is expected even if it hadn't been earned. To have to be open to help without being accepting of abuse.

To be disabled means a constant battle for dignity and respect. To be disabled is to learn how to be an equal while being treated as a lesser.

To be disabled means ... much.

A Guest Blog

This is all new to me. Over the last few months I've been getting requests for people who want to write guest posts on Chewint the Fat. One was a student who wanted to increase her writing skills and exposure. By the time I thought it through and was about to say 'yes' ... he letter to me was lost in a backlog of hundreds of emails. But then this guy 'Gary Presley' who has just written a new book called 'Seven Wheelchairs' wrote and wanted to put a post up that would both be engaging put also provide information about purchasing the book.

I did take the opportuntity to check the book out on other sites (sorry Gary, but I felt I had to) and I liked what I saw. I also felt that this was a good use of Chewing the Fat. So... for only the second time in over 800 posts, we have a guest blogger ...

Here you go, Dave. Try this one on for size. It focuses on the issue of happiness, at least as it relates to disability.

My book (Seven Wheelchairs: A Life beyond Polio) was published this year, but I refuse to accept responsibility for current the state of publishing in this let's-call-it-what-it-is recession. The only responsibility I have, according to the publisher (The University of Iowa Press), is to toot my own horn. Why not? After all, who better to report on the world of disability than someone who has been a citizen for close to fifty years.

If you've been riding a wheelchair as long as I have, you realize attitudes toward disability have changed over the years. Even so, I still get the occasional "Oh, I could never live like that" comment, which implies I should be sitting in a corner somewhere crying.

How can a crip reply? I suppose "You never know till you try" is the only rational response.

I was reminded of another aspect of this victim attitude a few days ago when I was interviewed by the host of a syndicated radio show. It seemed to me that he constantly wanted to bring the conversation back to the issue of anger. When I returned home, I looked up the passage in the book that had sparked his interest. It relates to my perception of the transaction between me and attendants I've had over the years.

"And so I have always been openly grateful to everyone who assists me in accomplishing that which my body cannot do for me. "You're so polite," more than one attendant has said. At first, I was polite, biting down and swallowing anger, because it was in the power of the caregiver to neglect me. And neglecting me would kill me.

"Now I believe I am polite and grateful because I better understand the nature of the transaction. Such weak terms – politeness and gratitude – for what I strive to express, which is a potent cocktail of reciprocal love, embarrassment, guilt, gratitude, resentment, appreciation, anger, and bemusement, all blended to please the palate and poured out as a pretty peace-offering, something to swallow so that we each understand you feel both good and bad about helping me, and I feel bad and good about needing help."

But here's another of those dirty little secrets: Writhing beneath the pleasant exterior facing the world, running like a stream of molten lava, is rage.

I suppose we all rage, including also those who presently journey through the world not yet disabled, saints excepted. But I didn't begin the book to vent. I wanted to illustrate the reality of disability, but to do that, I wanted to write so that people with disabilities would be seen as ... well, real, for lack of a better word. We human creatures are a gloriously messy mixture of good and bad, strong and weak, happy and sad. The reverse of that coin is that no one with a disability should be assigned to play the role of "inspiration" or a "hero."

And from the feedback I'm receiving, I'm pleased that many readers have seen me as a whole person, one in whom disability is present but not dominant, And one who realizes anger, like disability, can define character but is wise enough to understand that there are other psychological, intellectual, and emotional elements that also shape character.

And happiness.

Life is a grand thing, and it's all we know this side of Infinity, and all of us should be prepared to squeeze it dry. How? Seven Wheelchairs offers the opinion that we should greet each day with curiosity, with optimism, with passion, and then head out to release a little good karma in the world.


Gary Presley

Canadian Blog Awards Results

I'd like to begin by congratulating Lene Anderson on her win for 'Best Disabled Blog' at the Canadian Blog awards for her blog The Seated View. I nominated Lene for running in the category and, though I would have loved to have won myself, I am thrilled for her win.I just wish she hadn't won quite so spectacularly. Her 800 someting votes to my 200 something votes reminded me of all the races I was forced to run on 'Sports Day' in school. I always lagged far far behind.

Even so, I'd like to thank all of you who voted for Chewing the Fat, I know it was a bother to vote and a bother to have all my little reminder posts. But in the end it was a fun contest and I enjoyed the whole damn thing. The goal is to win a cartoon beaver, which really is the only kind I'd actually want, for your blog. Well, really, the goal is to have your work discovered by others and be read by a few more people. During the entire run of the contest I had people dropping in to Fat referred from the awards site. Cool. Some of them have stayed on as readers, cooler still.

I also popped over the Lene's site, as I routinely do. And after the voting was closed she wrote a piece called Hobbled which is fine writing.It's up there now and I recommend that be the post that you read today. It will introduce you to another disability blog and another strong voice.

Here's to you Lene, may we meet in the real world one day.

PS. I'd like to congratulate Belinda on her 3rd place finish in the best religious or philosphy blog. She was up against very hard comptetition this year and a finish in the second round was an accomplishment. A win in any of the categories is high praise. Hail Belinda Whatever He Says.

You Know You Are A Redneck ...

The batteries in my camera are dead. Which is way too bad because if they weren't you'd have a sight to see this morning. My couch, on stilts. Well, not exactly stilts but four huge bricks. Joe worked extremely hard hauling bricks and getting the couch lifted onto and into them (the feet fit into a hollow) so that I could have access to the front room again.

It all happened a couple of months ago. I simply lost the ability to get up and out of the couch. When we bought it, all those years ago, the fact that it was long and low was of no issue. We were both more than capable of climbing in and out of our furniture. But that ended one day when I tried to stand and found it difficult. I knew that soon it wouldn't be difficult, it would be impossible.

That day came quicker than I thought it would, as it always happens with these things. And then, suddenly, no more couch. This meant that the only chair I had that I could get out of in the house was my wheelchair. It also meant that I watched television from the office seated at my desk just behind Joe's chair in the front room. We were faced with a dilemma.

I looked at the chairs that stand up for you and besides looking a bit frightening, they all look very 'old manish'. So we just went along. Then someone mentioned that you could buy these furnature lifts just for this purpose. I was startled into realizine that my needs are not entirely unique - a realization both comforting and disturbing. We investigated and found that they were all too small for the size of the feet on the couch.

Then I arrived home from work to find the couch half up on stilts and Joe busy about getting the other side lifted. Now our front room looks quite odd. If rednecks have their cars up on blocks, I got them beat.

So last night I was back in the front room, easily able to get on and off the couch, and life proceeds apace.

Life with a disability is kind of like life without one ... a constant adaption to present circumstances. Figuring out how to live the life you've got is the primary challenge each of us faces. Others might find sitting on a couch up on bricks to be a step down. No, No, really, trust me ... it's a step up.

The Usual Suspect

We arrived at church a little later that we like to, we were not yet late but the service was set to begin only minutes after we arrive. As I've written before, the ramp into the church is very steep and requires a lot of concentration for us to get up the ramp and then through the door and into the sanctuary. Because of the time there were several people bustling about the area. I kept feeling in the way as people who had important things to do were obviously inconvenienced by having to step around us. One woman, in a choir robe, actively glared as she went by.

Entering church while thinking, 'Bitch,' isn't really a good way to get into the spirit of the event, but then life never goes the way expected. As the service got going I kept glancing at her. As she sang with the choir she adopted one of those 'holy' looks that people get when they want to look, well, 'holy'. I began to find a deep anger burn within me. It took me by surprise at the force and the fury of the blaze. I began to think about hypocrisy and suddenly nothing seemed right. It was all silly. Why was I there with these people? Why had we bothered to come? Why had I struggled up the stairs.

I shook my head, I was still in control enough to know that this was a real over reaction. Good heavens she had only given me a cross look. Was I looking for offense? Was I willing to find something wrong in the place? Did I need a reason for giving up on church altogether? What was going on? Hymns came and went, the service flowed over me and then something, I don't know what, captured my attention and I was drawn away from the trough of negativity.

A while later I looked back at her and realized that she looked so much like, so very much like, a girl from high school who had been at the heart of my social exile. She even smiled like her. She, too, affected a beatific manner. Oh my, Oh my oh my, oh my ... this wasn't about the choir singer at all. This was about me. About unresolved issues. This was about what I brought into the place. My baggage, yet unpacked from childhood.

How much of what I experience isn't really about others at all? How much of my experiences are about me and about what I bring to the situation? How many of my judgements are convicting the wrong person for the right crime?

Now I even wonder if she looked crossly at me at all. Did I simply see her resemblence to a former tormentor and then layer a memory onto a situation? Why has it taken over 50 years to realize I am part of every interaction ... I am the only constant in my life ... and therefore I am equally suspect.

Maybe even moreso.

FYI Only

For Your Information:

I have written a post about coming to faith which will be published sometime today on Whatever He Says. I thought some of the readers of Chewing the Fat would be intersted, and if so pop over. I appreciate the wide diversity of readers here and know that there are a number of readers who don't particularly like or feel comfortable with religious writing - I truely get that, this post would definately NOT fit those tastes. Thanks to Belinda for being willing to publish this blog there.

No, an Encore

In response to my post from yesterday Night Owl responded with quite an emotional comment. If you remember, I had written about the power of 'no' and about teaching people with disabilities to say 'no' even when, as people with disabilities we live in a world where other people's 'nos' often count for more. (An award for you if you followed that sentence right the way through.) Night Owl then responded by talking about how her sister, who has a disability has all the power - and is given that power by how she use's her disability. After you read what she said, I'm going to take the opportunity to respond:

But my sister is completely addicted to power and she has every single person in our house under her complete control. And while I'd like to say this doesn't matter, we are all older than her. I'm not saying that the older you are, the more power you should get though. Just, if it was equal, it would be nice, you know?

If she says no, that's what goes. If she says yes, that's what goes. No one else has an opinion. No one else has any say.

Like, I was drawing the other day, and she saw me. But then she suddenly had this need to see all of the sketches in my drawing book, and some of them are very personal! Plus, I was busy drawing! So of course I tried saying "maybe later because I'm drawing now". But she just grabbed it and ripped some of the pages. It's like I didn't even have a choice, even though it was my sketchbook, and my sketches, not hers. :(

It just does not seem fair that she has all of this power. I feel like I can't even live. I can't do things I like because she might see me and for example, then I would have to go through the violation of her looking through my private stuff... I understand that she has a disability, and so we have to be nice to her. But still, I need some things to be my own and not hers. :(

I feel like a really bad sister for saying this and feeling this way. :(

Night Owl, let's get what's really important out of the way first. You are not a 'bad sister' for having honest reactions to the behaviour of others. In fact your reactions are precisely because something is seriously out of whack and your instincts are telling you that things need to be changed.

Many years ago I did a workshop for couples with disabilities and one man said, 'As soon as they call you disabled they start taking things away from you ....' One of the first and most precious things taken away from people with disabilities are expectations, obligations and responsibility. The theft of these from children with disabilities has done incredible harm, particularly to those with intellectual disabilities.

Just because there is no expecation of learning does not mean that learning doesn't happen. You sister, forgive me, sounds like a spoiled brat, a behavioural tyrant and someone who needs to learn some discipline. I have often commented in my workshops to both parents and staff that we are raising a generation of spoiled brats who have few demands and fewer expectations. I fear that individuals with disabilities who do not learn some basic skills in relating during their formative years are destined to live lives of utter loneliness.

Friendship is a skill.

Do you know what research says is the most important social skill for the maintenance of relationships? Reciprocity. The ability to give and take, the ability to concern one's self with another's needs, the ability to suppress what one wants in respect for what another wishes. This is a highly complex skill that is so easy to teach. Without this skill - the likelihood of having friendships drops to almost zero, the likelihood of being loved disappears. Hell, the likelihood that any PAID careprovider will provide with care is startlingly diminished.

I often have people say that someone in their care doesn't need to come to a workshop on the word 'no' because they use it all the time, because they already control everything or because they can say 'no' but can't hear 'no'. I am saddened by these remarks. Firstly, my workshops are about preventing abuse - and abuse can happen to anyone with a disability no matter their temperment or temper. Secondly, these are precisely the people who don't know how to say 'no' ... using 'no' all the time demonstrates the inability to discriminate, being the person constantly in control demonstrates a complete lack of reciprocity and not being able to hear 'no' places the person in a position of vulnerability and danger.

Night Owl, I hope you don't mind that I pulled your comment out to respond to in a blog all by itself but I felt that I had to, your emotions were quite raw and entirely honest. I didn't find your attitude unkind or your concerns immature. But now I go further and want to respond to a single line of what you said:

I understand that she has a disability, and so we have to be nice to her.

Um, yes and no. Disability can take a bit more understanding, true. But what would be nice is if your sister was given the respect of expectations to relate as a mature adult. She needs to learn, or in this case unlearn, many things. You are her sister, she needs to respect you and your boundaries, she needs to learn to show you love and care as much as she expects you to show love and care. She needs to learn to be an equal part of a family - she doesn't always get the larger slice of pie.

So please, for the health of your family and the future of your sister. Sit down and talk, all together about how you all need to change to relate better and more positively with one another. Ensure that your voice is heard. And if other's won't respond with raised expectations ... then raise them yourself between you and your sister. This means that there will be lots of sparks and tears of frustration. But out of those tears will come learning, and out of that learning will come ... perhaps ... someone a little more loveable.

No.

"No."

A word of power and a word of oppression.

Traditions are a big part of how we live our lives. Joe and I are no different, we build silly little traditions around silly little things. On our flight home from London we, annually, have our last breakfast at O'Neal's at Heathrow. They serve breakfast with veggie sausages, greasy eggs, crisp fried potatoes and toast. We like to sit 'outside' and watch passengers as they rush here and there talking on cell phones while managing children. Then as Joe finishes his tea, I wheel over to a store a couple doors down and pick up his favourite brand of shortbread. Every year he is surprised. Every year I am delighted.

We were picked up at the Air Canada counter, early as we always are, and we told the pusher about our annual tradition. He said, 'No', the first of many that day, he explained that he had to take us to the disabled waiting area. Once there we spoke to the woman managing the place and explained that we'd like to go for breakfast and could we be picked up there instead of here. She thought for a long time, I felt, suddenly like a 5 year old waiting while someone with artificial power determined the course of my life. Then she said, 'No, wait here.'

I stayed calm and asked her to reconsider but she had done all the thinking that she intended to do that day and said, 'No.' If we wanted to go we'd have to get there ourselves and be back in half an hour. But the flight doesn't leave for ... and that's where the discussion ended.

We sat in the ugliest room possible waiting to be taken to the gate.

"No."

At the door of the airplane, I explained to the head purser that my chair had been stolen from the gate, that I was the only one on the plane with a personal chair, could he keep an eye out for my chair when it came up and try to ensure it went only with me. "No," he said. He explained that it was tagged and that was enough of a guarentee. "But," I said and before I could continue he said, "if it goes missing the airport has chairs" ... Joe is furious behind me but whispers, "Just leave it." And I did.

I teach people with disabilities to say 'no', no to abuse, no to disrespect.

But these are a different kind of 'no'.

They are used to assert power, inappropriately. They are used to diminish. They are arbitrary and they have the capability of making the petty, tyrants.

My adulthood was taken away by a silly 'no'.

My right to a secure flight was taken away by a disrespectful 'no'.

By two people who have already forgotten the moment, already lost the rush of power that they had ... but I am sure they are both popping the vein and getting ready to feed their addiction to power ... I am totally sure.

Heaven Bound

My last lecture day was one wherein I was asked to tell some stories that reflect on how we need to understand disability and how we need to reconceptualize service. There were to be two repeat sessions, morning and afternoon. I arrived in plenty of time and we set up really feeling the weight of the trip and though this was the last day ... it seemed long already.

The morning went well and the group was willing to go along with me. I could feel some energy coming back to me from the audience and I began to enjoy the esperience of teaching them. One of the fellows, on he way out, said, "You really pricked my conscience today, thank you." I like that kind of frank acknowledgement that someone saw something in themselves that they wanted to change.

By the time I was to start the afternoon, I was exhausted. I began. Telling stories twice in one day isn't easy as forgetting your place is a real hazard. But I got pulled into the spirit of the lecture, again, by an audience willing me on, willing me well.

When it was over a fellow came to speak to me. He had seemed closed to the lecture throughout and I was suprised that he wanted to talk with me. He began by saying that he wanted to tell me a story about connection and about what it meant to be real and present in the life of someone with a disability.

He had been working with a woman, who had died only very recently after a battle with cancer. His eyes filled at the mention of her death and I waited for him to gather himself. He talked about how close they had come over the years and about how it was his privilege to help her fulfill her dream. She wanted to walk along the ocean in bare feet. She wanted to feel the ocean air on her skin and feel the sand between her toes.

"I remember seeing her walking slowly along the beach. Her shoes in her hands and her feet sunk into the sand. She closed her eyes for a moment to just feel ... the sand ... the breeze ... the sea air. It turned out to be one of those high points in her life."

As she got sicker and sicker from the cancer's progression he would often come visit her. She lit up when she saw him. He, as it turns out a humble man, felt that it wasn't so much his visit that gave her pleasure but the fact that he reminded her of the day her feet walked on a sandy beach. She would look in his eyes and see the ocean.

They bonded there that day, in a moment of pure joy.

Joy. Joy. Joy.

It is in the moments of joy that people can truly meet. In joy there is no heirarchy. In joy there is no king and no serf. In joy there is no master and no slave. In joy there is only the celebration of the human spirit. In joy there is the divine.

The wise man may have built his house on rock ... but this woman began her trip to heaven on sand.

I was thinking about what to write today, the last day of my lecture tour. So many images flood into my mind. But, oddly, I had to wipe a bit of sand off the front of my shirt ... and the blog was suddenly done.

5 X Yikes

Well today is the last day of the lecture tour, I'm struggling to get the energy up to write a blog before heading out for the final talk. Afterwards I want to just sit and be quiet for a week. But Monday I'm back in at Vita and I know I'm going to want to share stuff from the trip right away. So there's no sign of me shutting up for awhile.

Joe and I were reminiscing already about the trip. I'll give you the high points tomorrow. The 5 funniest things that have happened on the tour ... Number 5 has course language.

1) In Glasgow I was on a little stage and at break there was no one anywhere around so I let out a series of big farts (time zone and food changes) seconds later a woman came up to ask a question. I was sitting in clouds of 'um' scent and two words into her question she said, "Oh, I shouldn't disburb your break ..." and fled.

2) In Bournemouth I was mistaken for a person with a disability attending the conference by someone who spoke very slowly to me to ensure I understood. I let them go on and just before I let this 'staff' know that I was the speaker, I realized tha the 'staff' was somone with a disability. When we both realized the mistake we laughed ... the line gets thinner and thinner.

3) In one of the places, (no I'm not telling) I started the workshop and was about 10 minutes in when I noticed that I was doing the wrong topic. I had to keep on going and slowly slide the topic from one to another ... they didn't notice, or at least they didn't say they noticed. I checked more carefully every day after that.

4) Being asked by a woman dressed like she had hippy philosophy if I thought that I should be talking about self esteem when I'm fat and clearly hate myself. I asked her if she should be talking when she clearly doesn't have the capacity to think.

5) I made a joke in Falmouth that I knew I could swear or say whatever I wanted in a place called Falmouth, in fact, I thought the signs would be Fucking Main street and Bitchen Parkway. They all thought that was funny. An elderly woman came up to me and said, 'I learned a lot today but I will never forget, for the rest of my life, about Fucking Main street."

Tomorrow I have to be up very early for the first flight home. I will try to do a blog so drop by, but if time doesn't allow it, I 'll write one on return home ...

The Storey Man

So how many animals can you fit into a condom? One cock and a couple of hares. Yes that's the level of humour we men fall to when drinking beer in each other's company. We met Nigel Divine and Steven Storey at the pub here in London. Steven and I are presenting at the same workshop tomorrow on the subject of sexuality, so we began swapping stories and stories became jokes and Stephen is the master of the quick joke.

As is the nature of such evenings the topics became more serious and we talked about relationships. Steven, a man with Down Syndrome, talked a lot about his love for his fiance Julie and shared a bit of his journey towards adulthood. Like all good speakers he didn't want to give away too much of what he was going to say the next day.

Steven spoke frankly about having Down Syndrome and told a story about how he first learned that he had a disability and what that insight did for him. He has decided that Down Syndrome is something he needs to be proud of, others need to learn about and he has a mission to ensure that he is never silent about what it means to live in the world with a disability. I sat in awe listening to him talk. This guy may be the most grounded person with a disability I've ever met. He is utterly and completely plainspoken about his life, his dreams and the challenges he faces. There is no self pity in him and he would recieve pity with distain.

Not only does Steven see himself clearly he sees others clearly as well. He told a horrible story about walking his girlfriend (who often stays over in his flat where he lives - alone) back to the bus stop. A car sped by, the window was down so Steven and Julie could hear the music play. Someone in the car saw him and yelled out, louder than the music, "Mongol!!"

"I was gobsmacked," Steven said and you could hear the vestiges of pain in his voice as he remembered that evening. The evening he was walking with his girlfriend, the evening that was warm enough for summer breezes, the evening when some passing stranger tossed cruetly out the car window.

"Some people are just cruel and mean, there is no excuse for it."

When he said that I grabbed his arm in agreement. No more making excuses for these jerks. No more with the myth that 'they need education'. No more. It's time for accountability.

Seeing that we had much in common we swapped stories about being stared at, about the rude treatment by others. It was as if we both needed to say 'Hey, You, World, Get It or Get Out."

Joe, Stephen and Nigel had a few pints and I drank my green tea, we moved away from the subject of the casual brutality of others - why - because it became boring. Because what they did couldn't affet what we do. Because the behaviour of others became a place where the two of us could connect, where we could nod in agreement at the horrid behaviour of assholes, but that's all it was.

That man who hollared out what Stephen called the M word, tried to hurt Stephen. Well, he failed. Stephen was angered. Proud people do not crumble in the face of bigotry, mean people can't throw stones high enough to hit the heart of someone who lives with dignity and integrity.

I am more because I met Stephen.

I suspect he has that affect on many.

Even after a beer or two and a bad joke.

Becoming Group

Outside my comfort zone?

Um, yes.

I've done a lot of work with Bournemouth People First and today I was part of a conference in the morning where different players were coming together to talk about community safety. There were representatives from the police, from the crown, from the self advocate group, from witness profiling. I was asked to do a 20 minute introduction on the importance of working together and what it meant to take abuse seriously.

All that's ok.

Then in the afternoon I was asked to do a brief 90 minute Just Say Know abuse preventino session for the self advocates in the room. But, instead of having all care providers leave the room, they would stay and see how the session was taught and how skilled individuals were. Typically these sessions are free of any observers, free of any possible interference. Now to be watched by top cops, by crown attorneys, by social workers and the like ... that felt like being on the hot seat.

But I've often said that I wish people could see how well people with disabilities learn and how hidden skills shine out from behind clouds of apparent incompetence. So, what was I to do? I agreed.

Just after 1:30 I looked over the audience of people with disabilities, many who I've taught before and I said, "Make me look good." And you know what ... they did. We threw ourselves into the workshop with abandon. It's a fun workshop, with lots of activity, lots of laughter and lots and lots of opportunity to practice. I glanced around at the faces of prosecutors and police, expecting judgement and boredom and I saw them laughing, clapping, participating.

So I took a chance and got one of the police officers up and into a roll play. He came willingly, enjoying the applause like everyone else. Then it was hell bent for leather, the group now was just a group. Not watchers and participants - but a single cohesive unit working and learning together.

It ended beautifully with the pledge of personal power.

I was tired.

The police officer, a DI I believe, came and spoke to me about the day, he loved being there and he loved watching the group learn. "I've learned a lot today," he said. And I knew he had, because there wasn't one teacher ... there were many. Each time a person with a disability got up to role play, to read, to participate - they taught messages of humanity and competence.

Dave had a good day.

And so did a few others, I'd say.

Coffee Chatter

The hotel we are staying in has both a Health Club and a Starbucks and, along with a trendy bar, is a hit with the locals. Over the weekend we've seen people streaming in and out of the hotel. I've been struggling to get over a cough that's be plaguing me for several days, so Sunday I just stayed in. After breakfast we asked the front desk if our room could be made up so that I could then snuggle in it for most of the day.

We went to Starbucks for a tea while we waited. We took a table that was easy to access with the chair. Off to the side was a man of about 40 who was lounging with a cup of fancy style coffee. He looked like he was on the way into or out of the gym. He radiated fitness and health. He looked up at us when we came in and then away with a grimace - perhaps of disgust, perhaps of loathing - I don't know and get so i don't care.

Joe helped get the footrests up and then said he wanted to get some postcards from teh room for us to do while we waited. Shortly after, our nieghbour got up to refill his coffee, I heard him speak to the clerk who he obviously knew well. "I wonder if these people know what burdens they are to others and if they actually choose to inflict their needs onto society."

He'd said it loud enough for me to hear.

I didn't respond.

I hate to admit this, but I had been wondering something similar myself over the last couple of months. There is so much more I need than I did before. The amount of work Joe has to do to get me from place to place. The need I have of specialized transportation at home. My application for a power wheelchair. My heavy use of the drug benefit through work. Sometimes I feel like a user. Sometimes I wonder who benefits from the struggle to go on ...

I'm not suicidal, never have been, don't understand it ... but I do get down. Sometimes life seems hard and people seem mean. Why did that man, that day, have to enter into my world with negativity. I was already down from having this cough and having to stay in for the day. What need I of him?

But I get up today ready to go back to the work of living. And part of the work of living is to keep purpose in front and asinine comments in the trash.

And besides, there are needs to be inflicted on others - and I'm the man to do it.

Ah, purpose.

A Voice from the Past

A couple of days ago a young woman came up to me at break and introduced herself. She had seen me present many years ago when she worked for a different agency in a different part of England. I had been invited to do a workshop for people with disabilities about teasing and bullying. I had only done that topic once before and, then, only for a couple of hours - this was to be a full day workshop. I agreed to do it because it was far in the future. But then, the future just keeps on arriving doesn't it.

I remember the day well. I had put together a variety of role plays, a game show, and had come up with two or three small group activities. I went in praying it would all go well. As a general rule people with intellectual disabilities are a kind audience - they will you well. I stumbled a few times, one of the activities worked splendidly while another one just plain bombed. At the end, I felt that the day had gone, if not well - ok. I've done that day many times since and have refined it bit by bit, audience by audience.

So it was that I was pleasantly surprised to be reminded of the day and have the opportunity to chat about it a little bit. She said, "I think you should know something that came of that day ..." My ears perked up and I listened to the story.

One of the men at the presentation was a guy with an intellectual disability who, though disabled, was quite skilled. He was very proud of the fact that he could drive a car and of the independance that it gave him. One part of his routine was that he took a neighbour to a social event every Thursday, they stayed throughout the event and then he drove them both home. His family was pleased that he had a friend and a regular social outlet.

After the day on bullying, he began to think about this 'friend' and their 'outing' together. The neighbour had demanded that he drive him, demanded that he stay throughout the evening and demanded that he drive him home. He realized three things. First, he didn't enjoy the evening. Second, this man was bullying him. Third, he didn't have to put up with bullying because bullying was wrong.

He thought about the strategies he had learned days before and then went to his parents and discussed what was happening and what he wanted to do about it. In short, the neighbour was confronted, the drives ended and the guy with a disability felt quite powerful throughout.

She said that she thought I'd want to know.

I did.

I have always been convinced that people with disabilities needed skills to live in a world that more often disrespects than it accepts. That given the right tools, people with disabilities can learn to deal with bullies and tyrants. That the best protection is education.

This whole weekend I've been thinking about that conversation.

And about what it means to me.

Outraged and Speechless

A couple of days ago I was giving a presentation in Torquay to a mixed group of parents and professionals. The topic, how to prevent the sexual abuse of people with disabilities, is a difficult one because prevention begins with awareness and awareness, in this case, hurts. One of the people attending, a mother of a child with a disability, put her hand up and made a comment. She reported of two rapes of teenagers with Down Syndrome in the area and then talked about her connection with a Down Syndrome service group who report that they have had a huge increase in calls regarding the safety and vulnerability of adults. She said that she just wanted everyone to know that the problem is 'local' that they were not to think that these were 'American' or 'Canadian' problems. She was worried that a need to disbelieve would have those attending begin denial with a 'but that wouldn't happen here'.

I applaud her boldness and her assertiveness. She wanted to be clear that abuse happens everywhere. Even here. Even there. Even in far flung places.

Later that day I got an email from Dick Sobsey who wrote to me about a case in Korea wherein a judge has given suspended sentence to a grandfather and three uncles who have repeatedly raped, over a several year period starting when she was nine, a young woman with a disability. The reason for the suspended sentence?

Are you ready for this?

So they could continue caring for her.

This has sparked international outrage. I ask you to become informed ... take a look at ICAD to read a report and then please vote on ICAD's poll.

I have tried without success to find the link to sign the international petition but was unable to, I am fully trusting that someone out there has the search skills that I lack.

It matters that we care about this little girl. It matters that we express ourselves in whatever way we can. Somehow she must know that there is a community of people who want her safe, who want her protected, who want her respected. Somehow we must not become used to travesties of justice. Somehow we need to figure out how to respond as a community, powerfully.

I cast my vote on ICAD's poll.

But it's not enough.

But then, what could be?

A Quick Question

Another brief post because the computer system went down in my hotel and I'm writing quickly before a presentation.

On arrival here in Plymouth Joe and I got into a spectacular fight. A real blistering argument full of nasty words and out and out anger. We knew we were both tired and we were both frustrated but nonetheless it was a big one. We don't fight often and have nearly lost the skill.

What was hard, though, was once we arrived at our hotel, I needed Joe's help to get out of the car and to get into the hotel. I didn't want to take it. I wanted to do it on my own. I really didn't want to have to rely on someone right after a screaming match.

But I had to.

I resented my disability more at that moment than at almost any other time. I felt that I had somehow stepped down in the equality of the relationship.

So, since I have no time to really write about this, I'll just ask ...

How do you handle fights with a partner who also has to double as a care giver?

Does it bother you too ... what about you as a care provider after a spat with the person in your care ... how do you do that well when there is still anger in your arms?

Curious ...

The Penny's Long Fall

She has been in my mind for over a month. What she said to me has been slowly working its way through the corridors of my mind. It all seemed so simple, nearly trite, when it happened.

During a session for self advocates a couple of months ago a woman, of considerable age, spoke of her husband who had passed away a year or two before. She was bereft in her grief and when she spoke of him her eyes shone with the ember glow of memory. He had been her husband, her love and her friend. She talked of him when talking both of what made her happy and what made her sad. His life made her happy. His death brought her almost unbearable sadness.

During break she came and spoke with me and when I asked her what was the most special thing about her man, she said, hugging herself. "He made me feel like a woman."

That was it.

A sentiment expressed in too many songs, on too many cards, and in too many movies. A sentiment that I should have been able to let slip away. But time and again over the weeks that passed it came back to me. It was like the memory, itself, was tugging at my mind ... notice me, think about me, don't let me go.

So I'd think about it but my mind couldn't wander out of the shallow end of thought. Cute. Sweet. But little more. As weeks passed, I thought about it differently. I thought about the loss she experienced and what he had brought her. The fact that she as a woman with an intellectual disability could feel loss and grief at the loss of a husband, a lover, would shock some. But it doesn't shock me. My mind tired of finding meaning where little meaning seemed to be hiding.

Then today, during another session with people with disabilities, a young woman with Down Syndrome who was attending said that her dream was "to grow up and be a woman." And it all twigged.

"He made me feel like a woman." Oh my God, that is huge. It's huge for people with disabilities to feel womanly, to feel manly. This is a population that has been sterilized surgically and psychologically, made to distrust their sex, their sexuality, made to reside permanently in the treehouses of childhood. "He made me feel like a woman." She was, oh my gosh, not talking about 'adulthood' ... no, she was talking about something much different. She was talking about sensuality and sexuality. She was not being identified in gender by her genitals, she was being identified in sexuality by her capacity to attract and be attractive, to generate love and lust.

"I want to grow up and be a woman." She wants to grow up beyond being a 'girl' ... she knows that her vagina identifies her gender ... she wants to be a woman, she wants her sexuality to not be located between her legs but between her ears. She wants to have her skin desired, her body wanted, her mind respected. She wants both the cuddle and the grasp. She wants the moan and the gasp.

"He made me feel like a woman."

No wonder she loved him. No wonder indeed. She was borne into a world that disrespected and denied not only the sexuality but the sensuality of people with disabilities. A world that saw the reproductive capacity of women with disabilities as dangerous, as demon womb, as the wellspring of societies devolution.

And into this world came a man who helped her discover herself.

Something wonderful.

Something powerful.

A woman.