Saturday, February 28, 2009

Ramped Eternity

There may be no tougher job than saying a few words at the funeral of a friend. On Thursday we stopped by the funeral home for the 'viewing'. Susan had wanted a closed coffin, so people came, said goodbye and then milled about chatting and sharing memories of Sue. After a brief hush of mourning there were little outbursts of laughter here and there as people remembered Susan and told stories of her life. Every one of us who knew how Susan viewed the work ethic, knew that she would be annoyed that we there on a work day.

I struggled and struggled to find a way to encapsulate a life into a few words. Especially a big life with big accomplishments, a life the had impact, had importance and made a difference. By the time I went to bed the night before I hadn't finished writing what I would say. At about 2 I woke up with an idea, I got up and wrote it down. For better or worse, it would have to do.

Knowing, just knowing, that the world isn't designed with the slightest thought of disability. We arrived at the funeral home early. I told them that I suspected that all the lecturns would be made for those standing, not for those sitting. They said that they, in fact, didn't have something that could be used by a wheelchair user. I told them that I expected that they expected that the only people who were on four wheels at the front would be lying down. They blanched at my joke (inasmuch as those pale people who work in funeral homes can blanch, these folks all looked liked they'd been the main snack at a vampire convention, but I digress).

We adapt the environment to make speaking possible and I park, to get ready for the funeral. I saw several people and the hardest thing for me, the very hardest, was knowing that I couldn't call Susan to gossip about the people at her funeral. Sometimes after a meeting we'd get on the phone and gossip away, laughing for long stretches. I wanted so much to ask her 'Did you see the face on that one?' ... 'She's obviously here for the lunch afterward!' ... 'My good heaven who's he with now?' While Susan was a wonderful professional, with ethics a mile long, she did love a chinwag.

All evening I flashed on something I'd like to talk to her about. Something where I'd just have to pick up the phone.

But there is a hole in my life.

A Susan sized hole.

And I'm glad of it. Joe and I drove home chatting about Susan and her kids, about the funeral and the people there. We were both exhausted. Saying Goodbye, the Big Goodbye, is very very difficult.

Oh, well, I'm sure of this ... 'Heaven's ramped ...' So I'll see her again.

Friday, February 27, 2009

Words from the Wild

Today I attend the funeral of my friend Susan.


For my blog today I'm posting an email I recieved from a Chewing the Fat reader, Jenn McWhorter (who gave me permission to use her name) about an incident that she witnessed and the action she took:

Hi Dave, I wanted to share with you something that happened tonight. It left me pretty disturbed all around. If you want to repost it, you are welcome to do so. My husband Sam and I went to Walmart tonight. While we were in the checkout line, I realized I needed to go to the rest room, so I rolled off to do so.

Sitting on a bench close to the bathrooms was a young man who was (quite clearly) pretty profoundly developmentally disabled. He was sitting there with this huge smile on his face, and one finger up his nose. Walking just in front of me were three very pretty college aged girls. This young man waved to them and said something that was probably a greeting, but his speech was very hard to comprehend. He continued smiling and picking his nose as he waved and spoke.

These girls busted up laughing, and started chanting at the young man: "EAT IT! EAT IT! WHY DONCHA EAT IT?" Then they walked on. The young man's face went from a smile to tears. Lovely girls on the outside. Ugly as sin on the inside. I didn't know what to do. But I kept following them, as the bathroom was still coming up.

Just before I went in, one of the girls mimed sticking her finger up her nose and spoke in gibberish, and they all started giggling again. At this point, I was done. I spoke up. "You know, that guy can't help that he's mentally challenged. But you can help that you're cruel, unkind people. I'm sure your mothers are proud of you."

With that, I rolled into the bathroom as the girls turned and gaped at me. I'm sure they had plenty of giggles over the fat cripple who dared to call them on their behavior, but I don't care. I'm a big girl and can defend myself. But why pick on some poor guy who CAN'T defend himself?

Sometimes I hate people. And I should have tried to comfort that young man, and to my shame, I didn't.



The Wild Wheelchair Woman

I'd like to add a public note to Jenn ...

Dear Jenn,

Thankyou for your voice, for your courage in speaking up, for not letting bigotry, cruelty and meanness slide. I have come to believe that the prejudice against those with intellectual disabilities runs so deep and is so pervasive that those girls probably expected social APPROVAL for their actions, that others would find them funny and clever. It is wildly important that people like you and I speak up in these situations. Not to speak for someone, but to stand with someone. To let people know that they are seen, that their cruelty has been noted, that their shame has been revealed.

There are many of us. We are far from the majority but we are also far from powerless. We have the power of our presence and we have the power to bear witness to the events which happen around us.

The world needs more Wild Wheelchair Women in it ...


Thursday, February 26, 2009

The Grand Strand

Some things just plain impress me. Some people just plain surprise me. These two often go together. My last couple of days were down in Simcoe for Norfolk Association for Community Living and I presented this year like I did last year in the Strand movie theatre. It's a great venue and if they will forgive me for being 'big city' ... it's as cute as a button. It's a multiplex, if multi means 2, that plays first run movies right in the heart of the town.

Last year when I presented there I loved the atmosphere of the room. And given that I was, then as now, teaching a lot of teenagers, the theatre is a perfect space. They come in associating the theatre with fun and anticipate enjoyment - it's a great place to start. I think the same phenomenon happens for staff and care providers as well.

My only complaint was that the floor sloped all the way down to the front. This meant that I sat in my wheelchair lecturing and teaching on a slant. By the end of the day I felt odd in my body and uncomfortable in my joints. I found breath control a little more difficult and often felt that I was in danger of rolling backwards. I explained this to the NACL folks last year but told them that when I came back, I'd still vote for the same location. The plus column was longer than the minus column.

So imagine my surprise when I went into the theatre and found that the management of the theatre, upon hearing my feedback. built a small wooden structure that I could simply roll back on and be perfectly level. They had made it such that the lip that I had to roll over to get on it was level with the floor and there was no extra work in getting up and on to it. It was incredibly comfortable.

After I was on it for about 15 minutes the guy who made it popped in to see how it worked. He and I spoke for a couple of seconds and I tried to convey to him how much I appreciated what he did. He smiled and acted like he hadn't done anything particularly clever.

This is the kind of attitude that I wish we could clone. He just seemed to think it was a responsibility of the theatre to make me, a disabled guy, comfortable. He just seemed to think that access was a right, comfort was to be expected and inclusion was an obvious goal.

I know, I know, this isn't the most exciting post in the world and in the words of an email I got today "some times your posts are boring" ... but I don't live on the constant edge of adventure and excitement. And I'm sorry if I think a contraption that was made, without expectation, and designed, without complaint, to make access possible is cool. Maybe not sexy. Maybe not funny. But cool. And to me, even in winter, I'll take a little more cool.

Wednesday, February 25, 2009

Susan Willed It

Why the call didn't come through, I don't know. At just before 9, yesterday morning, my phone signaled that there was a voice mail. I called in to find out who had left the message and froze when it was from Margaret, Susan's sister, asking me to call right away. In an instant, of course, I knew. Susan and I had spoken on the phone on Sunday, she wasn't well but we made plans to get together on Saturday. There would be no Saturday. Moments later I hung up knowing that my friend of 25 years had died that morning of cancer.

I looked up at the room. It was filling with mostly teens from the area schools, they were pumped from yesterdays bullying session and were excited to be at a session on 'power and control'. There were some adults there and they, too, caught the energy of the kids who were taking their seats. I had only moments to tell Joe that Susan had died. He asked me if I wanted to continue with the day. I answered quickly, 'Yes.' Susan took promises seriously, she raised the concept of duty to a passion, Susan would have willed it.

Partway through the session I had to stop and say to them, 'I can't do this next part, my friend died this morning and if we do this, I'll cry and I won't be able to finish.' There was a silence in the room. A young woman called out, 'It's OK' and then there was an echo of 'ok' 'ok' 'ok' around the room. The warmth and concern of the group embraced me and we finished. Several of the young teens came up to say thank you and say they were sorry I had lost a friend. A woman with Down Syndrome said, "You don't lose friends, ever, you will just have to wait a little longer to see her again." She smiled and put her hand on my shoulder reassuringly.

Then in the afternoon, doing a session on the same topic for staff and care providers, I was sailing fine. I had dedicated the talk in my mind to Susan and I just wanted to get to the end, get in the car and cry. I hadn't had time or space to cry. It was all going well until near the end I was about to tell the 'cake' story and I flashed on Susan telling me that this was her favourite story of mine. I froze at the memory. I could feel everyone looking at me. I told them the truth, that Susan had died and that this was her favourite story. And then, in front of them all, I sat and cried. Someone got me some tissues. With people waiting and willing me well, I pulled myself together and I finished the lecture.

Susan would have wanted me to continue. Susan respected those who honour committment. Over 25 years, I watched her grow. She challenged me. I challenged her. We agreed and disagreed, we fought and reconciled, we leaned on each other. Simply put, we were friends.

Susan Tough, farewell my lovely.

Tuesday, February 24, 2009

Monster's On Alert

It's always an honour to do workshops for people with disabilities. I remember when I was first asked to do one, I was terrified. But I had misattributed to the audience of disabilities things that were not true - they are a generous audience who genuinely wish you well. They have an internal kind of crowd control that is amazing. And when entrusted with real information given in a lively fashion, they react with enthusiasm and even, on occasion, joy.

Such was today's experience in Simcoe. I did a sesson on bullying and teasing with nearly 50 people with disabilities. Though the topic was dark, the stories darker, I try to keep the subject light and funny. We do role plays, we work through problems, we agree that while it's not always safe outside, it will be safe in here with us. Several people talked about their experiences with being called 'Retard,' 'Moron,' and other hurtful names.

My biggest job at these times is to teach without my anger showing through. To ensure that they all, every single one of them, has strategies for dealing with the real world and the outrageously mean people who inhabit it. They pulled together and supported one another.

At one point a young person was up beside me, I'd asked him a question about bullying, and it was clear he was a bit confused. When a teacher tells him to do something he doesn't want - that's not bullying. When his mom nags him to clean up his room - that's not bullying.

What makes someone a bully?

He looked at me, seriously. "When they hurt you on purpose. When they plan to hurt you. When they use words that make your throat ache."

There was quiet in a room.

"Yes, that's a bully," I said.

"When I was little," he said in a quiet little voice, "my mother said there were no monstors. She was wrong."

"And ..." I prompted.

"I'm better than they are."

Job done.

Monday, February 23, 2009

I'm IN

My neck is a mess. The muscles are all strained and pulled. It hurts to move. But it soon will all be better. We've rented a mini-van because we've had a lot of cargo over the last few days. Today we are headed down to Simcoe where I'll be doing two days of presentations beginning on Monday and have another long drive in the van. But it's ok, because last night, after supper, I finally figured it out.

This new disabled body of mine didn't come with instructions. I constantly have to figure it out, trial and error. For two days it's been error after error. You'd think that a van would be good for me to get into because it's tall. But then, I'm tall. After I get my leg it I have a hell of a time getting my head down low enough to get under the door frame. For the first few times I got Joe to press on the back of my head while I pushed and I'd pop into the car. My spine felt like it wanted to speed dial a chiropracter. Then, I figured I could push my own head down, what a charming sight. I became quite self concious and would only get in the van when there was no one around to watch ... and mock.

But then at dinner last night (The Works in Ottawa - the absolute best burgers on the planet) I went out to the car and in my mind I made myself into a paper doll. I looked at every point of the doll that had a fold, where folding was possible. And ... hmmmmmm ... I got in differently, properly, with no straining to get by the door. Wham, something new is possible.

Learning to live in one's body, learning to live with one's body, is part of the ongoing process of growing and aging. I'm still surprised what mine can do, and just as I'm beginning to think that something is impossible, I learn that it's not.

I think this is why I'm am optimist - the pessimist in me is constantly wrong.

Sunday, February 22, 2009

Jackson's Lesson

I'm sitting at Starbucks while Joe and Mike and Ruby are getting ready to go swimming. Ruby loves the pool and I love Starbucks Green Tips tea. I'm reading a wonderful little book called 'The Sweetness at the Bottom of the Pie' and I was having a lovely time when a family overtook the table two behind me. I worked at tuning out their chatter so I could continue on with my book.

I gave up because the children's boisterous voices kept breaking into my concentration. No I wasn't annoyed at their noise. I don't understand people who complaing about children's happy noises. Kids crying bugs the hell out of me, like it does everyone else, but happy sounds from children are charming no matter how loud or in what context. The giggle of the girls and the snorts from the boys acted as a kind of social 'happy' drug in my system.

So I looked out of the window and watched passersby and just listened to the chatter around me. One of the boys spotted me, I only know this because I get a skin prickly feeling when I'm being stared at. I glanced over to see if I was right and I was, he looked to be about 8 and he was scanning me intently. I looked away, uncomfortable. One of the parents notice and said, "Jackson, don't stare." I was pleased at the parental intervention and decided right there I loved the name Jackson.

A boy's voice said, "He must be so sad."

Dad now, "Why do you say that?"

"He can't walk."

Mom: "He rolls, it's just different."

"He can't run."

Dad: "I'll bet his chair goes really really fast downhill."

"He doesn't have any friends."

Mom now: "Look he's wearing a wedding ring."

Normally I'd be uncomfortable being talked about but I wasn't. I was fascinated. I listen to them calmly discussing why his assumption of sadness was just that, an assumption.

Jackson seemed like he'd been argued out. Finally he said, "Well, maybe he's not so sad."

Mom again: "Just because someone is different doesn't mean that we should feel sorry for them, we should just be curious about how their life is different, we should be interested."

Then suddenly, it was over.

Joe, Mike and Ruby came into the coffee shop and I was surrounded by activity. On our way out I stopped and said to Jackson's parents, "If I had an award to give to parents for good parenting, you'd get it. I appreciate you helping Jackson appreciate difference."

Jackson jumped in: So you aren't sad that you are in a wheelchair.

I looked at him and said: One day I'll race you ... downhill.

I love the sound of kids laughing.

Saturday, February 21, 2009

The Benefit of the Jerk Gene

So, dear Fatters, I am posting today after a lot of annoyance and upset. The hotel I booked in Ottawa made promises it didn't keep. We arrive in an accessible room (barely) with a tiny bed for one - Joe ended up sleeping on a cot on the floor. After much complaining we got things as settled as we could. I went down this morning to do a blog and wham ... their computers were down. Enough was enough. I got the front desk to contact another hotel within the same brand - a hotel we knew and we managed to get transferred there.

The great thing about a wheelchair, I discovered, was the ease of protest.

Let me explain.

Once they made the transfer they informed me I'd be paying a rate of 80 more for the night. Now, I had booked a room with two queens, we got a single. I had booked a wheelchair accessible room, the door was too narrow to get through. I had expected an accessible bathroom and got a tub with a bar in an impractical location. I had checked to ensure there was a computer for guest use, there was no computer. I figured, it was up to them to make me happy, up to them to get me what I needed.

Well, they figured it was up to them to get rid of me and my complaints. And they nearly had, they could taste my departure. But now we were haggling dollars (I don't need people sending me money - I can afford the room rate, this was principle). Finally I said, "I'm in a wheelchair I can sit comfortably right here in front of the reception desk while you all figure out a way to give me the same rate. You have made a mess out of my weekend. You are making me move hotels. You promised and didn't deliver. I'm really OK with waiting ALL DAY."

Then I leaned back in my chair, grabbed my sippy cup of tea and took a long draw, and relaxed.

They panicked.

It was fun to watch.

A line up was forming behind me and I didn't frigging care.

Guess what, I got the rate reduced AND I got an apology.

More that that, I can write a blog up for tomorrow. I've got a good and upbeat one but first, now, I had to gloat.

Because sometimes being a jerk pays off.

Friday, February 20, 2009

Ruby and The Wheelchair Dog


I'm tired.

How do you do it?

We picked up baby Ruby at just a little after 8 o'clock yesterday morning. We are on a road trip which has us arriving this morning to meet her father and then, all of us, onwards to her mother in Ottawa. That means we have care of her, on our own, for just over a full day. By the time we went to bed last night we were exhausted. Bone tired. Try as we might, we couldn't find an 'off switch' or even a 'dimmer switch' to turn down all that child-powered energy.

I pride myself on being some who, when awake, is awake. I feel that I am alert to my world, the dangers in it, the joys awaiting - but man, the level of alertness that is required in the care of a child is astonishing. Absolutley astonishing. And I understand that some people have more than one - the idea boggles the mind. I should add to all this that Ruby has a pleasant temperment, she never cried (not once), she never whined (not once), never tantrumed (not once) - and STILL we were tired.

At one point we were watching television. OMG kids programming, at least for kids under 2, is bonechillingly dull. But Ruby watched in fascination as the plot crawled like blood flows in winter. One program we watched (I searched and searched for the name of this program but could not find it, I'm sure some of you are aware of it) starred a bunch of actors dressed up as dogs who sing in a band, hang out in a clubhouse and cavort with each other. One of the dogs is in a wheelchair. I was surprised to see him there and watched to see if he was a burden or a participant - he was very much a participant in the episode we saw.

Ruby pointed to the dog and then looked over at me sitting in my wheelchair. She watched in great fascination, her eyes glancing over at me and my chair and then back at the dog in the chair. Finally she pointed at the screen and said, "Like Dave" and then laughed. Apparently this is quite funny.

Later she said, when she was drawing a picture and talking to herself, "Doggie like Dave."

I'm not sure if the dog in the chair was less odd because he was like me, or if I was less odd because there was a dog in a chair on television. Either way, it's a good thing, a really good thing.

Note To Readers: My computer laptop is dead, I'm on the road through til next Wednesday, some hotels I'm staying in have business centers with computers others may not. My posting will be sporatic until I get home and get the problems with the laptop sorted out. Apologies in advance.

Thursday, February 19, 2009

Lost ... For Words

I pushed myself out of the elevator and saw her sitting on one of the couches in the lobby. I pushed over so I could park beside the security desk to wait for Joe to bring the car around. I was working elsewhere in the city and it was impossible to get through to WheelTrans to book a trip to somewhere other than my preselected destinations.

Just before I parked she asked if I needed her help to get through the door. I smiled and imagined this small woman with a huge walker struggling to help push me through the door, though I was glad of her willingness. I told her that I was waiting for Joe to bring the car around. She smiled at Joe's name. This is no surprise, by now Joe knows every old lady in the building by name, they all think that he is a sweetheart of a man - all because he listens to their chatter and laughs at their jokes.

She then asks me if I can get through the doors on my own. Long time readers of this blog will remember when I wrote about my sense of victory the day I attempted and succeeded in getting through the inner and outer doors on my own, I told her that I could, it was difficult but I could. She said that it was difficult for her too, that she always looks for the 'disabled button' on doors to help her get in and out of buildings. I agreed that I did too and said that those automatic doors weren't just good for those of us with disabilities but for those with packages, with children, with strollers. She agreed that they did make life easier for a lot of people.

I told her that I'd only been in the chair for a little over three years but now I am glad of all those people who fought so hard for access, curb cuts, wider hallways, bars in bathroom stalls - each one was a victory that made it such that I, now, had access. She nodded and then fell quite silent.

I thought the conversation had just run it's natural course and that we were done, but a few moments later she said, "You know, when I was younger, I used to complain about the money that was spent on curbs and on ramps. I used to say that it was a waste of taxpayers money, that working people shouldn't have to pay for these things. I never thought that one day I'd be glad of a ramp or a curb cut." She looked quite ashamed of herself. I said, 'Well, we are allowed to live and learn, you know."

"I suppose," she said, "but, in my case I think it was meanness not ignorance."

It wasn't until she said that that I realized that she was right, there was a difference between those two things. That there are two sources of prejudice, that there are two battles to be fought. Joe then pulled the Beetle up to the front of the building and she smiled and waved to him. He saw her and gave her a huge smile.

"What a nice young man," she said.

I agreed and pushed over to the door to wait for him to come through. She said, "Maybe if I'd been less mean, I wouldn't be alone now."

I didn't say anything because I simply didn't know what to say.

Wednesday, February 18, 2009

Ick Ick Ick

It’s been bothering me for days. It shouldn’t be because when I first read it I responded right away. I waited for the comment to go through the approval process and saw that it was indeed published. That should have been the end of the whole thing. But I haven’t been able to let go of it … something about it gave me the icks. Every time I read the damn thing, it bothered me more. So I guess I’m not done with it yet.

“It” is an article that I found referenced on Patricia Bauer's powerhouse blog. A column had appeared in the Los Angeles Times about the upset over the SNL (Saturday Night Live) skit about the Governor of New York, David Paterson. The skit focused, not on policy or personality, but on blindness. They showed the Gov as a blumbling blind fool, as if bumping into furniture was high comedy and ‘Helen Keller’ jokes the height of hilarity. Now, I need to state right off that I have never got SNL and have never much watched it. It was always on at a time where I was in bed and if not in bed in a bar … as such it didn’t fit into my lifestyle.

But I am afflicted, as I imagine you are too, with friends who love to describe to me the funny goings on in movies and television shows. Through them I heard of SNL and never really found any of it funny. So be it. When I first heard of the ‘blind skit’ I went to YouTube and saw it. Beyond being offensive, I simply found it deeply unfunny. So when I saw a column on the issue on Bauer’s blog, I went to read it and found something written by a guy named Michael McGough.

I was pissed by the end of the first few lines of the article wherein Michael McGough describes childhood dinner table conversations wherein he and his family would wonder aloud which disability would be worse to have. What wonderful parenting that is! Let’s sit around and fuel our sense of superiority by titillating ourselves by imagining all the freaky ways to be disabled. I wonder if on alternate days they had discussions that began: “Thank God we’re white, what would be the worst race to be?” The smugness of those who breathe a more expensive brand of air than the rest of us has always annoyed me. But even more troubling is to have someone talk about ‘superiority discussion’ without realizing that such discussions have led to policies of social exclusion, social disaster, and social extermination.

But that’s not all. Then, then, THEN, Michael McGough goes on to say that when he was young a misdiagnosis of a vision problem led to a few sweaty hours of worry about loss of sight. This, in his mind, QUALIFIES HIM AS AN EXPERT IN DISABILITY ISSUES. I was so offended I almost choked on my tongue. In my response to him I stated, paraphrasing here, that the fact that he coulda, mighta, had a vision problem (but without experiencing one moment of blindness) does not give him an ‘in’ into the idea and experience of disability. As a wheelchair user if someone told me that they ‘get’ my disability because they once had a sore toe, I would feel my experience trivialized to the point of absurdity.

Michael McGough never, for a moment, discusses the issues about the rampant unemployment that people with disabilities face. The blistering statistics on bullying and teasing that people with disabilities experience. He ignores that HATE often targets disability first, others later. No, No, No. Not here. Here he is IN HIS ROLE OF DISABILITY EXPERT, saying that SNL’s skit was just funny, not offensive.

After he establishes himself first as a bigot that titillates himself with difference and a fool who cannot tell the difference between seeing and not seeing, why should we care what he has to say. Except, he’s saying it loudly, in an organ that reaches millions more than my poor little blog here. Well, I put my voice up against his …

And Michael McGough, I want you to go home and imagine (it’s a game you seem to love to play) what I’m doing with my hands around your ego.

Tuesday, February 17, 2009


Her cart hit me in the shoulder. I was bending down (my power wheelchair has me sitting very high) to pick up some bananas and suddenly a grocery cart smacked into my shoulder. I looked up to see a woman flushed with impatience glaring at me. I knew she wanted me out of the way, and I would have moved if asked, but I get a 'screw you' attitude when people treat me as if I have no right in the thoroughfare. When she figured that I wasn't going to move she began to back up to go around the other way. Sensing a small but important victory, I sat up and pulled away. She saw a small space created and decided to head for it. She crashed into the side of my chair in her rush to get by, making a small tear in the bottom of my shirt as her cart caught and then tore through the material.

Just past me was an elderly woman with a walker. Some elderly people have faces that age well and they manage to look kindly, she was one of them. The cart woman pulled up beside her and said, in a heavily accented voice, 'Is there anything else you want?' The woman said 'No,' and they headed towards one of the line ups for a till. The elderly woman spotted a friend, also using a walker, and stopped for a moment to chat with her. The cart woman, obviously a hired aide of some kind, blew air out of her nose and a near rage filled her eyes. This was a woman in a hurry.

The elderly woman glanced over and a flicker of fear filled her face and she quickly said goodbye to her friend and got in line. Joe joined me and got in the line the next over. My chair is a wee bit too big for the aisle so I left the store and came round to where the check out tills let into the mall. We were only picking a few things up for baking and we'd intended just to put them in my wheelchair bag.

When the two women, elderly and aide, were coming through the elderly woman attempted to pick up the groceries to pack them into a bag. The aide slapped her hand away, actually slapped her had away and then quickly packed the bag. I wanted to go over and blast the aide, 'You are getting paid to do this, without this woman's need to fill, you'd have no job, no income, no way to feed yourself or your family'. I wanted to say, 'You can be seen, everyone knows that you are being mean, even cruel.' I wanted to say, 'Don't you ever hit her again or I'll bring the full force of the law down on you.'

But I didn't.

I'm a stranger.

And 5 minutes after the interaction she'd be alone with this woman.

They were almost done. I found a pen and a bit of paper (I'm a writer, they are never far from me) and wrote a note. In it I said, 'It's not OK for her to treat you badly. If she hurts you it is a crime. Call 911 directly. Don't go through the agency, call 911, directly. Here is my phone number if you need a witness for the police to talk to ..." I printed my name because no one can read my signature.

I approached them as they were leaving and handed the woman my note. She looked at me a little startled and then took it. 'Do you want me to take it for you,' asked the aide. The elderly woman, a face full of cleverness, said, 'No, dear, I'll just put it in my purse.'

I watched them walk away.

I'm expecting a call.

Monday, February 16, 2009

Today Is A Holiday!!

In my little corner of the world it is a holiday today. Here in Ontario we have 'Family Day' in February. The idea is that we should celebrate family. In many ways the word 'family' has come to be one that causes me to shudder. Let me list one or two reasons why ...

1) As someone who works with people who have been victimized, I learned early and often that 'family' had capacity for hurt on levels that can't be properly understood. Under the umbrella of 'family' children have been victimized, women terrorized and men destroyed. The building block of society has sometimes been made of little more than straw and mud.

and if that ain't enough ..

2) Am I tired of 'family values' as being code for 'prejudice' and 'persecution'. I resented 'family' being politicized and made a place of unwelcome. The family of God seems to have the bastard son, the wayward daughter, the unwanted child. It's hard, even now, to think of family values without the taste of bitterness.

So, you can imagine that I am a little ray of light on family day.

Well I am.

So There.

Because I love family. I love the concept of people of common cause, of common vision, of common purpose setting about to make family. I love feeling that sense of belonging when I can be in a room with strangers and yet feel understood. I love that sense of warmth when my mind embraces another's idea, my heart grabs hold of another's words, my soul holds on to the loving timbre of a reassuring voice.

I really do love family. I believe it is possible to create communities, intentionally, families willingly. I believe it is possible to forge links more durable than blood, more lasting than history, more powerful than difference. I understand 'family' as a verb not a noun ... family is something you DO. Family is something you MAKE. Family is something you CREATE. It's not a turkey diner, it's conversation at the table. It's not presents under the tree it's presence through the year. It's much more, much much more.

So it's family day.

To members of my various families, have a wonderful day.

And here, especially to my Blog Family - feel yourself cherished today ... because you are, by me.

Sunday, February 15, 2009

Sol Gordon

I'd like to tell you all about one of the most important hours of my life. I was a very young speaker, just beginning a journey that would take me all over the world. I have never been a comfortable speaker and always, even now, fiddle with the lecture, rehearse lines, reassure myself, right up until I begin. I have grown comfortable with the nerves because I am aware that they give me energy and keep me focussed. But one day, I was particularly frightened of speaking in front of someone in the audience.

Sol Gordon was, at the time, at the peak of his career. He commanded large audiences, he had the reputation of a speaker of power and humour, he had cut a very large path. I had heard him speak twice and was completely impressed with his 'voice' ... he managed to have his style and his humour highlight the content of his presentation in ways that I had never seen before. I was used to humour being an overhead of a cartoon that only barely had anything to do with the theme of the presentation. For Sol, humour, drama, were part of life and life was the subject of his presentation. 'Gifted' isn't enough of a word to describe him as a speaker, he was so much more than that.

A couple of years later I was speaking at a conference where Sol was the 'wrap up' keynote. I was terrified to speak in front of him. He was the best and I was afraid that he'd simply sit in the audience and shake his head mournfully while I presented. He didn't. I watched him while I talked, he laughed, he made notes, the attended to what I said. Afterwards I spoke to him when we were both gathering notes and tidying up in readiness to leave the lecture hall. I congratulated him on another barnburner of a lecture and asked him what he thought of my lecture.

He looked at me and asked, 'Do you want flattery or feedback, I can give you either?' I said, 'I'd kinda like both.' He laughed and said, 'Let's sit ...' We talked for almost an hour. He had me think about what it was I was attempting to do up there in front of the audience, evaluate the goals of my lecture. He asked me to think about who the audience was, what their goals were, what they had come for. He asked me to think about the purpose of my work and the meaning of my words. And he gave me advice, freely and, even, lovingly. His praise was wonderful but his guidance was firm. He said that he felt that I had greatness in me that had yet to be discovered, that if I was willing to constantly think about the means and the message, I could make a difference.

We ran into each other a few more times over the years, he invited Joe and I to the Glide Church in San Francisco and we had a wonderful lunch together. He came to hear me once, he wasn't speaking, he just came as my guest. It had been a few years since our talk, I had made the changes he suggested, I followed his advice in preparation and in presentation. Afterwards he said, 'Today, I have only flattery.'

I recieved an email from a friend yesterday letting me know that Sol had passed away. I hadn't heard. After his wife died we lost touch and I never heard from him again. I think of him still as I write new lectures - I begin with message. He introduced me what it was to have grace with greatness. He taught me what it was to enjoy the talents of others without jealousy or alarm. He taught me what a few minutes can mean to someone on the way ...

Sol, I hope my work over the last many years will have the impact that your work, your life and your message had. Because you had the courage stand for what was right, you gave permission for others to stand behind you and with you. The darkness of ignorance and of prejudice has been challeged by the light from the candle that your life lit.


Memorial for Sol

Saturday, February 14, 2009

And Then of Course ...


Naughty Rating #$%@

Post is part of the Valenties, Let's talk about sex blogging day

It was my first real outing in my new power wheelchair. Joe had sent me to pick up some bread and I found a couple of loaves that looked perfect. They needed to be sliced so I lined up at the counter behind a woman, of a certain age, who turned and looked down at me with an expression that told me that she hadn't had a good shit in years. She looked away, then back, then away again. Finally, as the clerk was taking time filling her order, she turned to me and said, "You know what I've always wondered about you people ...?"

Now I immediately knew that by 'you people' she didn't mean 'gay people' or 'bright people' or 'working people' or any possibility other than 'disabled people'. I smiled my nicest smile and said, "And what would that be?" She took the package from the clerk and I handed my loaves over to be sliced. She paused waiting for me to finish then said, "What do you do to fill all the hours in the day?"

I coulda said that I worked. I coulda said that I spent time with friends. I coulda said a lot of things. But I didn't. I said, "All I can say is thank heaven's for televison and food ... and then of course, there's the fucking." Her face fell and I think she may just have had that good shit she'd needed these last many years. She glared at me and said, "How dare you speak to me that way?"

I said, "You asked."

Then she full on glowered, "Well, looking at you, I believe about the television and food ..."

I said, "If you don't believe me about sex, smell my breath."

An unpleasant interchange ended but you should have seen the shiny eyes of the woman who cut my bread.

After having lived with the gay stereotype for the first half of my life, you know the 'gotta fuck em all, one at a time or in a group ...' stereotype, it looks like I'm going to live the next half of my life with the idea that disabled people are as sexual as potted plants. I get tired of having to reassure others, strangers whom I owe nothing to, that I am fully human, that I have hopes, dreams, a job and a sex drive that still has a bit of gas, a stick shift and manual transmission.

Why is it that when people see the wheelchair they can't even imagine someone paying me for work, asking me for my opinion, or using me as a sex toy? Why is it so hard to believe that disabled people can want, can lust, can ply someone with alcohol and flattery? Why is it so hard to believe that I may have a full day of enterprise, of entertainment and of intercouse? How can we have come to believe that there are some who are human, in name only?

So, I don't regret what I said in the store. I know I shook her up. I know she thinks I'm crude. But big deal, enough with worrying about what other people think of me.

It's time they worry about what I THINK of them.

(And by the by, I get terrific service from the ladies in the bakery section. One even winks at me)

Sexy Bloggers

When I put out the call for other bloggers to blog about sexuality I was suprised at the response. I figured that maybe one or two of you would bite (stop it) but 15 did. Some may have forgotten but go ahead and check them out. Even if they didn't remember, at least you'll discover those willing to talk dirty. There's Jannalou first up. Then rickismom gave us a new blog on the topic. reformed anon. girl in pain and s signed up so did gun who may be talking dirty in another language.

Not tired yet, I hope not because we've got way more people here in the web's red light district. What would today be without one sick mother You may know ettina from comments here on the blog.

OK. I'm tired, it's taken hours to figure out that I had somehow clipped a > off of the links which screwed up all the formatting. I'm now going to just list the other bloggers, the list is shorter because I've trimmed off some who have not yet posted ...



The Zach


and joining in a little late, go and visit ..



and then, for a hot video check out ...

the woolworth cup

a lovely late entry ...

bits of betsy

To all of you who wrote today, thanks. If you wrote something but are not on the list, put your contact in the comment section and I'll move your link into the main section.

My smutty little foul mouth entry follows shortly ...

Friday, February 13, 2009


Soon after the door shut and Joe was off to his medical tests yesterday, I got down to work. I love writing in the very early morning because it's so quiet out. I have a due date for a chapter that I'm writing on sexuality for people who use augmentative or alternative communication - we need it at work, it's needed elsewhere, it's a good use of time. I had been working on it piecemeal over the last few weeks and had finally come up with the framework for the chapter, written the examples and drafted the notes from which the final text would come.

I knew that I'd be sitting home an worrying about Joe, I figured that becoming engrossed in work was the best way to pass the time. Normally when I'm writing something that requires a lot of focus I can shut down everything, all worries and wants disappear. I tucked gleefully into a section called 'Language Equals Power' and the words came well. Sentences appeared and progress was made. But my eye never left the small numbers at the right hand bottom corner of my computer, I watched them count down minutes.

I saw the time come when Joe was to go in for testing. I began counting down the 90 minutes it was to take. I kept shaking my head trying to focus solely on a project that deserved attention. Section after section were finished but my eye never left the clock on the bottom corner of the screen.

Joe had promised to call when he was done and sure enough, finally, the phone rang. There hadn't been a phone at the clinic so he was calling from across the street and was home a couple of seconds after the call. He had a paper with him that gave him the results of the test. Normally you get tested, then you wait (and worry). But no, it was all finished and he literally had a clean bill of health.

He hadn't eaten for almost two days so he had a bite to eat and then took a lay down. After I was sure he was tucked into bed I went back to work. Magically the numbers disappeared from the bottom corner and I managed to almost finish the task. I have a bit of research left to do, I'm working on a list of the language that's absolutely manditory to be able to assess consent to sexual activity (you need neither "fallopian tube" nor "epididimus").

Later on we went shopping to pick up groceries. I have a pot luck meeting at work tomorrow and we're making a spicy tortellini soup (from scratch of course). Joe walked quietly alongside my power wheelchair and said, 'I guess we get more of this'.

I didn't say anything back because I couldn't.

I needed some of that alternative or augmentative communication.

Thursday, February 12, 2009

Morning's Frustration

I'm angry and frustrated and even a little bitter. I'm sitting here alone in the apartment, Joe having gone alone to a clinic where he will undergo some heavy duty and serious medical tests. All along I thought I'd go with him but a few days ago he told me that he isn't allowed to drive for 4 hours after the test is completed. If I go with him, we'll have to sit around for those hours. Then he suggested that it would be best for him to take the subway in the morning and a cab back. He assured me that he'd be back early and all would be well.

A few minutes ago he was running around getting ready and I was being Smiley McFacey. I did't want my upset to upset his day. He asked what today's blog is about and I told him that it was about the joy's of early morning. 'I'll read it when I get back,' he said. And he'll discover me a liar.

Every single time I've had a medical emergency, a medical appointment or a medical test, Joe's been right there waiting. I can't tell you the solace that provides, just knowing that there's someone, no not 'someone' ... him ... there a few feet away. I know I'm torturing myself but I keep picture Joe in there alone, with no company, with no support. I just hope he can feel that I'm here at home in my office wheelchair saying a prayer a minute that he'll be fine. I'm sending out positive energy so the test will go smoothly. I'm hoping that he'll be blissed out by the drugs so he won't wonder about the inequity of our relationship.

A while back I wrote that my disability didn't change much. And, really it hasn't. But some of the stuff it has changed is important and leaves me feeling much less of a partner, much less of a man, much less of a friend.

Damn, I'm worried.

Damn, I don't like this.

Wednesday, February 11, 2009

Towards Understanding

Sometimes I forget that you all really exist and that Chewing the Fat is more than simply a personal journal. Though it's true I stop by every day to read comments (fewer and fewer recently - please remember to comment) it still comes as a wee bit of a shock to me when I run into a reader in the real world. As happened yesterday when Joe and I stopped to pick something up for dinner at a grocery store on Yonge Street. I almost didn't go in but it had been a long day at the office what with getting there early on WheelTrans and staying late for a meeting, and I wanted to get out and push around a bit.

Joe ran ahead to get what we needed and I pushed over to the magazine rack. Just before getting there someone almost stepped into my path causing me to pull up short. A woman of about 40 introduced herself to me (Hi, Jenna) as a regular reader of Chewing the Fat. It wasn't a name I recognized as a regular commenter and she said that she tended to lurk but that she lurked every day. We chatted aimiably about the blog and her interest in it - she has a teenager with an intellectual disability.

I felt an undercurrent in our conversation that was darker than what was being said, so I asked if everything was OK. She told me that she was a little surprised that I never responded to an email question that she had sent me privately. I felt immediate guilt. I do try to answer all emails and know that sometimes I fail ... if a whole wack comes in and an email is no longer on the first page, it can leave my mind. I apologized but I could see that she was still a bit annoyed.

Then this morning I came on and there were, predictably, a whole batch of emails that I eliminate without openning. These are the ones that invariably offer me money, millions of dollars, in exchange for my partnership in some odd enterprise. I get so many of these kind of emails that I don't even open them. I have never had my computer crash because of a virus, and I think that's because I practice 'safe email' ... if I don't know the person or the purpose I eliminate it.

So, here's the deal dear Fatters, if you are writing with a private comment please put CTF or Chewing the Fat in the re: line and I'll be sure to open it. So if you've sent something and didn't get a response, try again. I really do try to answer them all, I'm guessing that I miss some because of backlog of emails and others by erasing them accidentally.

Most of all I ask of you, patience. I don't pretend to perfection (don't even aspire to it). Besides writing a blog, I have a full life, and I'm getting older. Things slip by me, things move too fast, I fall asleep in movies. I am not DAVE HINGSBURGER, most of the time I'm just Dave - and for better or worse, that's all I want to be.

Tuesday, February 10, 2009

A Hint

Thank God that the warm is coming. I could feel it when I left work today and there were points in the weekend that gave hope to the idea that spring might indeed come. It's around now that I begin feeling a bit stir crazy. I still go out, but not as much. I'm still active, but not as much. I'm still busy, but not as much. I tend to weigh the work of being out in a wheelchair now more than I do at the beginning of winter. I tend to stay inside and venture out only after Joe has checked to see if the driveway is clear, the roads have been plowed, there is at least a pathway to traverse.

I don't like giving in to the captivity of disability but I've been doing it more and more this winter. I had a huge scare a few days ago when I almost overturned my power wheelchair trying to get around ice on the sidewalk. My heart went crazy and I used my force of will and the chairs power to keep myself upright. OKOKOK, I need to be careful.

So we've done a wack of cooking, watched a wack of DVD sets as we've waited for the weather to turn warm. I've managed to keep myself upbeat and positive but now the effort for even that seems difficult. Like I've sprained my optimism muscle.

It was good to feel the warmth today, see that it will get to double digits on Wednesday, on the way home we saw pavement that has been covered for several months now. The days of my confinement are coming to an end. I long to get the power chair out and really put it through it's paces. I can't wait to move freely around my neighbourhood.

This hasn't been the winter of my discontent, but if it's a day longer than it needs to be, it could become so ...

Monday, February 09, 2009

BHM: The Quiz

Searching for something to do to celebrate Black History Month, I realized that I hadn't seen anything much about people with disabilities within the Black community. I did a search and didn't find much but I did find this quiz which was unsourced. I called a friend of mine who assists his company in putting together activities every year to mark the month and asked him if he had any other references that I could use. He said that the whole issue of disability within the Black community has a horrible and tragic past. When I asked him to explain he said simply, 'What economic value do you think slave owners put on babies that were born different?' After a long pause, I said, 'Oh.' He said, 'Oh, indeed.'

I told him of this quiz and read him out the questions, he got all but one. I'm wondering how you all will do. I found it under the title you see here below and have not changed it. If anyone knows a source, please put it in the comments and I'll transfer it to this post.

In honour of the month and in honour of those who never got the chance ...

Black Disabled Trivia

1) This slave rescued other slaves and brought them to freedom. Who is she? What was her disability?

2) This famous soul singer in 1997 he wrote a book called Truly Blessed, about his life before and after his accident. Who is he?

3) This African American is the first deaf professional baseball player. Who is he?

4)A 1992 comedy show, ‘‘In Living Color’’, introduced the first Black disabled hero. Who was it?

5)This Black amputee, 1984 Olympic skier and author was the first Director for President Clinton’’s Human Capital Issues on the National Economic Council. Who is it?

This post isn't much but I hope it adds a bit to the celebration of the triumph of difference over prejudice.

Sunday, February 08, 2009

Anna's The One ...

The line up was almost a block long and the doors weren't due to open for a half an hour. Joe and I have been attempting to get to as many of the 'Met at the Movies' broadcasts as we can. We knew that the live performance of Lucia di Lammermoor was going to be packed because we had bought the last two tickets from a theatre that was showing it in two halls. We arrived early and got in the line up. We waited quietly together and I listened to the buzz of conversations happening around us. There is something about going to an opera, even a performance where popcorn can be consumed, that turns people into snobs. Even voice patterns are affected, DAHling.

Two women walked along the line up hurrying in tiny 'old lady' steps towards the back of the line. They walked arm in arm together the way that ladyfriends do. They took their place a couple of spots behind us. They were easy to hear because the spoke loudly to one another - like each had their aid turned off. Directly behind us was an 'opera queen' who had dressed for the even and seemed annoyed at the hoi polloi with whom he was forced to share a line up. The only noise he made was the occasional sniff when someone wearing jeans joined the line.

The elderly women were talking, almost predictably, about their grandchildren. One of them mentioned that her grand daughter Anna had started a new job. The other one said, loudly, 'Now that's the one with Down Syndrome, right?'

There was a pause and even though they were behind me I could hear one arm being withdrawn from another. The temperature around us dropped. I think others noticed too because around us chatter died like a canary in a toxic mineshaft.

'Yes, she had Down Syndrome. Let's make sure that everyone around us knows that my grand daughter has Down Syndrome. Every time I talk about her you ask 'she's the one with Down Syndrome'. Every time. Well for the last time. Anna has Down Syndrome. I know that. She is a lovely girl. She's just started work. She's moved into her own apartment. Now you, when you talk about Jason, do I say 'He's the drunk who can't hold a job?' Or when you talk about that horrible girl, Caroline, do I say, 'She's the one who her parents can't get into therapy?' I've had it. I love my grand daughter. ANNA, THE ONE WITH DOWN SYNDROME.'

A few people actually applauded the little tyrade when done. I didn't because just when they were done the doors openned and I needed my hands to push my chair forward. When we got into the theatre, we raced as fast as we could to get in and get a seat together. We managed to settle down and Joe went out to get snacks. He came back and told me that he'd seen the two women go into the other theatre where the opera was to be played.

The performance was wonderful and and I had forgotten everything but the music. Joe took me to the top of a long interior ramp and said, 'I'll let you make your way down while I go to the washroom. I eased down the ramp being careful to control speed so that I didn't bump into calves or shins. I pushed myself by the door to the other auditorium where the opera had played and parked near the exit and waited for Joe to come. The women walked by talking about the performance. They had seemed to have moved on from the spat they'd had earlier.

I wonder if ANNA, THE ONE WITH DOWN SYNDROME, knows that grandma's got her back?

The Day Sex Took Over

Reminder: On February 14 a group of us are going to be writing blogs on the topic of sexuality, sensuality and disability. We'd love it if you would join with us on this day. If you are planning to do so AND HAVE NOT YET SIGNED UP ON A PREVIOUS POST please sign up here. Thanks ...

Saturday, February 07, 2009

From Pink to Black: Exclusion and Death

When we first moved to Toronto, we did so partly because we had lived only in small towns and wanted, desperately, to meet other gay people. We wanted to be less alone. We felt that there was always a slight undertone of violence in our interactions with others. That, if discovered, we could and would be brutally dealt with. Even though we know that prejudice lives everywhere, we felt that we would be safer and more anonymous in a large city. I admit we embraced the gay village with gusto. There was a joy in being connected, being part of a community. It was in this context, of joyous discovery, that I first saw a pink triangle. It was being worn by a handsome young man on a streetcar in Toronto. I didn't know the symbol, and being forward, I asked him what it meant.

He told me.

He told me that gay people in Nazi Germany were rounded up and placed in concentration camps, in the camps they were made to wear pink triangles on their prison uniforms in the same way Jewish prisoners were made to wear yellow stars. He answered my question, quickly, efficiently, and loudly enough to be heard by others. This guy would probably be the first gay activist I ever spoke to. He used my question as a platform to inform, educate and provoke. I've never forgotten that lesson.

I was, understandably I think, upset that I had never been taught that gay people were part of the Nazi purge. Being me, I set out to inform myself and read a number of books about the Nazi persecution of gay people, I went to see the play 'Bent' when it was in Toronto (Brent Carver was one of the stars and it was brilliant) and, of course, bought myself a pink triangle to wear.

Somewhere along the way, I read about how the whole idea for extinction of a race began with the extinction of a people. Those with disabilities were the first, and easiest target. They were, in many cases, already segregated away from others. In other cases they could be tracked by doctors throughout the country. Systematically experimentation on mass killing techniques were carried out at facilities that housed those with disabilities, primarily the institution at Hadamar.

Then, years ago, I saw a documentary wherein a child with Down Syndrome was one of those liberated from a camp. I have sought to find that documentary ever since. But it made me wonder what symbol was worn by those with intellectual disabilities in the camps. Only recently I posted here on the blog a question about the word BLOD and what it had to do with disability history in Nazi Germany. I recieved a number of responses both on the blog and personally.

In all that I finally got my answer, those with disabilities wore a black triangle (for asocial) with a white strip of cloth with the word BLOD (stupid) written on it. I wanted to see what this looked like so I asked my niece Shannon who is one of those artsy, crafty, knitty people if she could make one up for me. She did so and sent me a picture of it over the internet and the real thing in the mail.

I like symbols.

I like remembering and memorializing.

Therefore I have placed this symbol on my blog as an act of remembrance that those of us with disabilities are always at the cutting edge of the desire to 'improve society' by elimination of 'others'. We were first with the Nazi doctors. We are first with the gene doctors.

I'm going to frame the black triangle and hang it in my office. I'll wait for people to ask. And if they don't ask ...

I'll point it out.

Friday, February 06, 2009

Heart Shaped Bigotry

It may be one of the oddest conversations I've ever had. I had gone into a card store to buy a Valentine's card, this is difficult because most of the cards are made for situations probably a lot more like yours than mine. Anyways, I was in my power wheelchair and I had pulled up to the rack of cards, a sea of pink. A fellow was standing there looking through cards, picking them up, reading them placing them back. He was taking his time and I immediately thought, 'Lucky woman.'

I picked up one that had a funny comic dog on it. Comic dogs are great to look at but they really aren't the right spirit for a Valentine's card in my humble but honest opinion. Even so, I'm drawn to comic dogs and I read the sentiment that ran about an inch deep and set it back. The other man looked at me and smiled one of those men to men smiles that we give each other on situations like this.

After a second or two more he chuckled and said, "We must be quite the sight, we two." I looked at him quizzically and said, "Pardon me?"

He said, "Everybody will be surprised to see us shopping for these cards. They see you in your wheelchair and think that no one would love you like that. They see me in my turban and think that I'm planning a bombing. And here we are looking for cards because we are men in love."

I said, "I know, everyone simply assumes that I live alone, unloved.'

He said, 'Well, everyone assumes I blow up the people I love.'

"You got me beat," I said and we both laughed again.

He found a card and wished me well. I told him that I hoped the card would be a hit. I wanted to say that I hoped the card didn't bomb but I wasn't sure that he'd have appreciated the humour.

As soon as society determines that you are different - they refuse to believe that you have a heart that works.

Well mine does.

And so does his.

Thursday, February 05, 2009

The Secret Ingredient

I got the time wrong. When Tuesday at 4 came and went without a call,I thought the reporter doing the 'small town boy hits it big' article decided to seek out someone who's fame is a bit more sparkly than mine. I was almost relieved because, as I said in an earlier post, what's to say? So when I answered the phone this afternoon, I was startled to be talking to a reporter who had written down a different day that I remembered. So be it, we talked.

It's odd being interviewed about yourself and your accomplishments but I found that I was giving her not only my history but also a history of the civil liberties movement embraced under the concept of 'community living'. From early days in institutions to beginning work in sexuality of disability. From first book to thirtieth book. From lecturing locally to keynoting internationally. It was all really about how far we have come in understanding disability and conceptualizing the word 'all'.

I flashed on seeing Phyllis yesterday at the rights session for people with disabilities. I met her first in an instititution, last in the community. First captive, now free. How cool is that? I flashed on agencies that once forbad dating who now host weddings. I flashed on the moments of courage I've needed, the moments where I needed to practice understanding while feeling anger, the moments where I seemed to stand alone while shit rained down on me.

She dutifully asked questions and seemed caught up in the spirit of the interview. When I was done I hung up and looked over at Joe. He said, 'No wonder we're always tired, we've been really, really busy over the last few years.'

And we have ... but we've kept on going because, and only because, we've always had a ready access of ...

Wednesday, February 04, 2009

The First of Many Rights

If it wasn't worry, it was it's french cousin 'souci' that I wasn't 'sans'... all morning I prepped for something that I've done a thousand times. Several years ago a visionary woman named Wendy Hollo came up with the idea of having people with disabilities that received service from Skills (the organization that she ran) write a 'Bill of Rights'. She wanted to know what rights people with disabilities thought were important and wondered if she could shape an organization around those clearly expressed rights. I was the person she asked to help facilitate this, I thought it was a good idea, so I did.

News of that process got out and I ended up helping a number of agencies and self advocate groups go through a similiar process. I have been very, very, careful in facilitating these meetings. I don't want to 'lead' even when I have to clarify meaning or press for more information. I always double check the bill of rights done one day with those done on other days. I figured the day they all started to sound alike, I'd stop doing them, because a bill done in New York City should sound different than one done in Edmonton.

What made today particularly stressful was the fact that Vita is my home agency, some of the members know me, many of the staff know me, I'd be watched and evaluated differently than in other agencies. I desperately wanted to do this right, capture the sense of the meeting and facilitate not lead. Having Joe with me is a big help because he's the one who takes notes and writes down what he hears, he is very exacting at this and feels it's really a high calling to be penning a 'Bill of Rights' for those once seen to have none.

When we arrived it was snowing. The weather forecast got it wrong and a couple of centimeters turned into a near blizzard. So we arrived early and I was on edge (sorry, Ann, Carolyn and Ryan)but we set about setting up. At first there were only a few people there. I glanced out and wondered if the weather would be a reason for people not making it. I figured if I made it in a wheelchair and a VW Beetle there was no excuse for anyone else missing it.

When Jim arrived he walked in with great purpose, he had the short stature that many men with Down Syndrome have but he made up for height with his almost military stride. He had a necklace of stuff hanging round his neck and bouncing off a round belly. He got to a seat turned around and made an announcement. I immediately learned that Jim liked to speak, a lot, but his words came out ill formed and without obvious meaning stitched to them. I caught one word in his announcement. 'Power.' Someone else told me that Jim had lost electricity in his apartment. I said, 'So you lost power in your apartment.' He nodded and sat with obvious pleasure at having been understood.

I wondered how I was going to incorporate Jim into the training as I simply didn't understand his words, the other's in the room were equally in the dark. I didn't want to patronize him or frustrate him but I didn't want to let my fear of those lead to my excluding him from participating as much as he wanted.

Finally everyone was there, I was introduced to the group. I began as I always do by establishing the rules for the group. By the time we got to the discussion of rights I was so glad of taking the time to make sure everyone knew how to 'be together' because, man, did they have things to say. Jim, as I would have predicted, had his hand up right at the beginning. I took him second. He stood, cleared his throat and made an announcement about 'power' and I knew he was wanting everyone to know that he had lost power in his apartment. I translated for the group and asked Jim if that's what he had said, he nodded - but before he could sit someone said ...

'there are all different kinds of power'

From there the group went into this amazing discussion of power. Jim knew that everyone was talking about the word he used so he stood, his face grave as he tried to follow all the various words. Finally, out of the discussion, Joe wrote down the right they wanted on their Bill of Rights.

The right to learn about our personal power and the right to use it every day.

When Joe wrote it down and read it back, everyone applauded. Jim bowed to the group and sat down, tears streaming down his face. I'm not sure that he has ever in his life been as validated as he was in that moment. People had listened to him, people had carried on a discussion that he had started, and what was said was written down.

Jim may have lost power in his apartment, but he gained power that afternoon. Power he may not have known that he had. Power that he may have to learn to use. Power that can't ever be lost when the electricity goes off.

Tuesday, February 03, 2009

I'm Here

After he got out of the van and was safely at his destination, I wondered, ‘Do his staff know how vitally important it is that they do the work they do?’ Do they know? I hope so, because just knowing would make every moment seem so much more important.

But, I’ve begun in the wrong place in telling this story. As a new user of WheelTrans, Toronto’s transportation service for people with disabilities, I am being introduced to a whole new world – it’s like I completely misunderstood the length and breadth of this land called ‘Disability’. I sit quietly as the van pulls up to senior’s residences, hospitals, group homes, support programmes. Everyone who gets on the bus has a destination. Something that I think would surprise the non-disabled world who tend to look at us as rudderless lost souls.

Another cold morning that I’m picked up by a warm van. I’m told that we have one stop on our way to my office. We drive through parts of Toronto that I haven’t seen before and before too much time passes we stop outside a residential home. The house looks like it’s still asleep, no lights come from anywhere inside. Even so the driver gets out and trudges through snow and cold to check to see if the passenger is up and ready. A door opens to his knock and a tiny, elderly man comes out. He seems like a flower that’s been long pressed between pages, frail. The driver brings him carefully to the front and assists him in.

Once in the driver speaks to the passenger in Italian. He said that he picks up a lot of Italian passengers so he’d learned some key phrases to make them feel more welcome – where do they get guys like this? As we drove the elderly man began by talking about the seniors programme he was heading to at Villa Colombo. His words were not clear, they were not distinct, he got lost in what he was saying. But it was clear from phrases of meaning that popped out from thoughts that rambled.

They are good to me there.

I love the place.

Every day, new, they are nice.

Thank God they are there for me.

When we pulled into the parking lot the driver was momentarily lost, he didn’t know exactly where the programme entrance was. He asked the elderly man, who suddenly came fully alert, he indicated that the programme was around the side and down a bit. When the van was turned around so that he could get out and almost step in the door, he said, again to himself, ‘I’m here.’

‘I’m here,’ he said these two words like I would imagine he will say them one day, probably not far off, setting foot in heaven.

I wonder if they know what they do matters.

A lot.

To him.

Monday, February 02, 2009

Vita Presentation: By Request

I'm hesitant to do this but a number of 'CTF' readers have written to ask about the presentation I am doing in Toronto. It is indeed open to the public and I'm attaching the information from the flyer. Today's post follows this one.

Dave Hingsburger Presents:

Communication, Hierarchy and Rapport:
A Workshop About Listening

Friday March 27, 2009

The relationship between care provider and care recipient is fraught with all sorts of perils. Control issues can create an ‘us against them’ atmosphere wherein compliance becomes more important than compassion – an atmosphere wherein the ‘everyday abuse’ of power is both encouraged and accepted. This workshop begins by taking a hard look at the things that get in the way of ‘listening’ to someone with a disability. Using lecture, group activities and role plays, attendees will be able to examine their own issues regarding power and control and determine the best way to establish a trusting rapport with those in their care. Dealing with deep issues with humour, this fast paced workshop aims to provide both new skills and renewed motivation for all who work directly with those who have disabilities.

Register early as seating is limited

Watch for these two upcoming exciting workshops:

Making Contact, Making Connections, Making Community.
The Heart of the Matter:Sexuality and Relationships for People with Disabilities

About the presentor:

Dave Hingsburger is Vita’s Director of Clinical and Educational Services and a well known international expert on the issues of disability, rights and self advocacy. He has written more than 30 books and hundreds of articles. Dave lectures internationally and his work has been recognized as groundbreaking and innovative.

Cost: $100 per person, $80 per person if registering 5 or more

How to Register:

Contact Rose Castronovo at VITA Community Living Services by Friday March 20, 2009

TELEPHONE: 416 - 749-6234 ext. 211 FAX: 416 - 749-1456
MAIL: VITA Community Living Services

Depends On You

Right after the opera is over and the lights in the theatre go up people rush to the door. At least half of them 'funny walk' as they go down the ramp and turn left towards the washroom. Being in a room of people of 'mature years' means that there is a hush throughout the performance, no cell phones go off and about half fall asleep midway through the first act. It also means the the bathroom is a full before the credits start to roll.

Like everyone else we headed to the washroom and I was first in line sitting outside the disabled loo and Joe went to the men's room. The line up for the women's washroom was incredible. I remembered my mother once saying that the best birth control for a woman was to put a nickle between her knees and to keep it there without falling. Most women in the line up looked like they had followed that advice.

Two women, who must have had 160 years between them, were waiting in line both frustrated at the 'men' who designed women's washrooms. One of them said, 'Oh let's just go, my place is only five minutes from here.' They both stepped out of the line up and at least 20 women stepped forward with an aggressive kind of greediness that comes about in long lines.

As they passed by me the other woman said, 'But oh my I have to go.' Her companion immediately did an about face and headed back to a line up that they would have had to use a crowbar to get back into. Her friend said, 'No, it's ok, let's go.'

'If you have to go, you have to go,' she said, insisting.

'It's alright, I'm fully dressed,' she said.


'I'm FULLY DRESSED,' she repeated in a whisper.

'Oh, OH,' said her friend, and after a pause said, 'I am too, the opera can be long.'

They walked away and as they passed me they started to giggle like schoolgirls, by the time they rounded the corner and headed to the door they were laughing out loud.

I learned something as I sat there outside the can. That's how you get through this life, with a sense of humour, a touch of class and a little bit of planning.

Sunday, February 01, 2009

Mr. W. Wart

I fretted the whole morning. We had booked a trip, on the WheelTrans bus, up to Yorkdale mall. I wanted to see how I made it with the chair on the bus. All morning I kept picturing the narrow ramp up into the bus and by the time we went down I had become convinced that the wheelchair was too wide and I'd not be able to go. Well the wheelchair is wide but the ramp is slightly wider and I rolled up and onto the bus, we got to Yorkdale in time for a movie, for lunch and for a roll around.

On the way back, after the first drop off wherein the side ramp broke, I worried the whole way because I knew I was going to have to back off the bus. By the time we got home I knew, just knew, that I was going to fall off the ramp, break the chair and do serious injury to myself. I'd seen the image over and over and over again. Instead, I put the chair on low power and drove straight back and down the ramp. Joe said, 'And you worried all the way home didn't you?' I admitted that I did.

We just went down to Butler PA to take part in a meeting discussing the creation of safe agencies for people with disabilities to live within. For two days before I worried about the meeting, how it would go, what I would say, who would be there, what the weather would be like. I'm fretful about these things anyways but when I've gone a few weeks without lecturing as I typically do in January, it gets worse. I worried all the way down there, I worried in the morning when we got up, I worried right through to when we finished.

When I got up a few minutes ago I began thinking about my lecture here in Toronto in March. I haven't lectured in Toronto for quite some time and within a few minutes I imagined two pictures, in one no one shows up and in the other everyone I know shows up and I completely embarrass myself.

Oooooh, what fun it is to live within my head.

I have super powers, I am 'Worry Man'.

I can derail joy at 50 paces.

I can bring down hope with a single glance.

I can conjure up a huge worry to replace a small concern in an instant.

Somehow I have lost trust with the future, I expect bad things even though (for the most part) good things keep coming. When it's sunny, I wait for rain. When it's raining, I wait for wind. When it's windy and raining, I wait for the end of the world.

I am setting myself a task this week. I am going to try to spend a week with worry banished. I am going to try and let things just happen without anticipating the worst. I am going to be hopeful without cringing.

And of course I begin to worry that I won't be able to give up worrying.