Decision

"Oh, God, they're even smiling at me now," Joe said as I was getting out of the car and into the chair at Walmart yesterday. He went on to tell me that two people give him the sad smile that I've been getting since my first day in the wheelchair when they saw him pull the chair out of the car. It's hard to explain exactly how intrusive it is to have these smiles thrust upon you, or even exactly why they are so damned annoying. The face of pity has a wee small sad smile.

Then in the store itself I was trying to push myself around a cart that was blocking the entrance to the aisle I was wanting to go down. The woman with the cart was looking at a display of DVD's and seemed oblivious to the fact that she'd left her cart across the entranceway. I waited for a second for her to notice and just naturally move it, she didn't. I said, politely, "Could you please move your cart so I can get by?" She looked at me with hostility and anger and yanked the cart hard, it bounced out of her hand and against the display knocking several DVD's to the floor. The force of her anger frightened me and I quickly swung round the cart and down the aisle. The face of hostility has flared nostrils.

I put my purchase on the counter and waited for the clerk, a young man, to ring it up. He looked at Joe, behind me, and told him the amount. I pointedly pulled my wallet out of my pocket to pay. He said, "Oh, he is going to pay?" he asked Joe. I answered, "Yes." "Good for you," he said as if he was talking to a little boy with a bunch of coins in his hands. The voice of prejudice is frosted with sugar.

Sometimes you just want to go to Walmart and by a box set of DVD's to take home and watch. Sometimes you just want to be anonymous, inconspicuous. But, in a wheelchair, you never are. It is necessary, just for emotional survival, to be able to surf waves of pity, push through hostility and digest prejudice. There is a real skill to being disabled. I'm discovering, for me, that the biggest skill is figuring out what to fight and what to laugh at, what to take on and what to let go. The difference between courage and cowardice is decision. I decided to smile back, to thank the angry woman for moving her cart and to say, "Yes, good for me," with humour to the clerk.

Courage or cowardice?

I've made my decision. You'll need to make yours.

Alphabet Day

I'm going to shave today.

I never shave on weekends. Skip it during the week if I think I can get away with it. I remember as a boy anxiously checking to see if my soft cheeks were showing any signs of stubble. Somehow the idea of shaving was oddly romantic. A sign that I was an adult, no better, a man. Well you better be careful of what you wish for because sure enough, I'm an adult, I'm a man, and I shave. Running a blade around your chins in the morning isn't quite the rush I thought it would be. So I'm no longer a man, I'm a guy - shaves when necessary and no more.

But I'm going to shave today.

This is special occasion shaving. I expect extra points for shaving on a Sunday, the designated day of rest. I haven't shaved for several days (I'm teaching summer school, I don't shave for summer school, I make a big point of that on the first day of class - see, I didn't shave, we're going to be relaxed here together) so I'm going to have to weed wack before I do the final close shave. But it's a special day and ..

I'm going to shave today.

Down in the city of Toronto, today, there will be just over a million people parading in the streets. It's tempting to think that they are all there revelling in the fact that it's our 39th anniversary today, but in fact they're there for some little festival called 'Gay Pride Day'. Oh, sorry LGBTQSAGLPCGFDay. I keep forgetting. Now, let me get this straight (pun intended) we were a couple before there was such a thing as alphabet day. They chose our anniversay not the other way round.

We aren't going down to the city for the day. It's too crowded and traffic is bad. So we celebrate our anniversary up here, we have the Gay Pride flag hanging over our porch and that's pretty much that. Next year we will be living in the city just a block off the parade route so no doubt we'll be there for the celebrations.

After breakfast at Cora's, if it's still sunny, we are going down to the waterfront. Joe went there a couple of days ago and scoped out an area where we can go together. It's accessible and, apparently, a nice stroll. We know that when people see us they will just see a couple of old guys spending time together, one in a wheelchair, one with the residue of a limp. They won't see two radical gay guys.

But what's nice is ... after 39 years ... if they did - they probably wouldn't care.

Now that, my dear, is worth a shave.

Lazy Blog for Saturday

My fingers grabbed on to Saturday morning like it was a life raft.

I've climbed aboard. I smell toast cooking and hear eggs frying, Joe is listening to something on the radio and laughing. Outside the rain is pelting down with real force, the dropplets slapping the earth with force, almost anger. No one is moving outside, though across the way a car is idling in the driveway and the yellow interior light shines inbetween the gloom of mist.

I rest in Saturday morning like it is a hammock slung between yesterday and tomorrow.

We've planned the weekend, nothing much, went to see a movie after summer school yesterday. I fell asleep in the theatre and woke with Joe watching me, not the movie. We talked menus on the way home and laid out a plan for tomorrow, big day tomorrow. Went to sleep that night knowing that the week was over.

I embrace Saturday morning like it was lost youth.

My weeks alternate with good days and bad days, highs and lows, painful moments, moments of clarity - but I'm called to be present pretty much all the time. This week I did intakes of people waiting for what they needed now. I had meetings that caused me upset. I got phone calls that brought me joy. I taught Summer School which is an annual treat. A week with varied responsibilities and various demands. Typical week.

But this is Saturday morning and I'm hungry for breakfast.

Somethings Missing

A couple days ago, sitting at my desk in Vita, writing something on the computer a young woman appeared in my door. I stopped looked up and smiled. She asked to talk to me 'just for a minute'. I told her to come on in. She sat down, twice apologized for taking my time, twice saying she could come back later, twice saying that I looked to busy to talk. She was so young, so overtaken by nerves, I could only smile inwardly at the memory of me during my early days working direct care.

I assured her that I was having a busy day, dealing with something big - good, and big - good leaves more time than big - bad. I encouraged her to go ahead. She said that she'd picked up a copy of my book "Just Say Know" recently and as she was reading it she thought that I'd missed something big. I sat back in my chair, enjoying the conversation, she caught my movement, realized what she'd said, and began to apologize again. "It's a good book, I'm really enjoying it ..."

"Hold on," I said, "I expect people to think while reading my books. You read it with different experences that I wrote it with, of course you are going to come at it with new ideas, I love this kind of thing?"

"Really?"

"Really?"

Then she did what I love people doing. She went personal - then she wen professional. She talked, vaguely guarding her privacy, about a couple of personal experiences and how those experiences informed her about what she needed to know, what she wished she had been taught, what would have made the world safer for her. Then when reading the book 'Just Say Know' and the "Ring of Safety" she noted that her need, the one she'd been thinking about wasn't there that she thought should be there, or at least should be talked about. She was well spoken, she could draw her explanations in pictures in the air - the mark of a good teacher.

We discussed it further and I told her that in my original document for the great 'Abuse Prevention Experiment' at Vita, her idea is on the table. We'd tried to find people interested in working on that aspect of training but they had fallen through. Would she like to investigage it further?

She would.

She will.

I expect an email with a plan in my mailbox when I get back there next week.

This is probably a 'tease' you probably want to know what her idea was. Well, it was her idea. Even though I wrote it in the original plan, if this goes forward it will be hers first, mine second. I'll write about it when she's ready to go forward with it. The point here, isn't what her idea was, the point here is how she came to realize what others may need.

The ability to look objectively at your own life, see honestly what a situation meant, is one of the best gifts you can have as a parent, as a careprovider. We work in human services, we parent human children - our own humanity is obviously a resource for understanding others.

And I love it that someone when reading my book was at the same time, reading their own story.

What the staff who is writing the note to me at Vita doesn't know is that I've already taken her idea upwards in the organization and got an agreement to invest in some books and investigate some avenues of training - for her, Christmas is coming early.

Notes

Summer school begins today. Six years ago I went to Susan Tough with the idea of creating something a little different in the summer. Training mixed with appreciation. Thank you mixed with learning. Direct care staff work so hard and often feel unappreciated by the very agencies that rely on them. Direct care staff also often feel that they need more training, more information to do a good job. Out of those concerns, expressed directly to me in my role as consultant to agencies. I proposed something radically different.

Two four day classes. One"Behaviour Self" on understanding and dealing with problem behaviour. One "Sex, Sexuality and Sex Education" on, well, sex, sexuality and sex education. The classes would be comprised of 4 days and run Thursday/Friday Thursday/Friday. We start the class at 9:30, take an hour lunch, end at 2:30. It's a shorter day, but it's summer school. That's school that happens in summer. It's supposed to be a little more relaxed. I don't shave for summer school. It's supposed to be SUMMER.

When I first proposed the idea to York Simcoe Behaviour Management Services, I wasn't sure if there would be an audience for the idea of training for information with hours that leave room for summer fun. Well, six years later, we're still here and still doing it. It may seem that this means easier classes for me too - well the hours are good - but every time I sit down to teach I need to have pared the workshop down to what's really important. Not a bad thing to do.

Over these summers I've met some amazing people. What I didn't realize was the effect of the classes on me. Normally I'm into a place, do a lecture, then on to the next place. I get no real sense of the people in the seats. At summer school there are always connections made, between my self and students and, of course, between the students as well. It's a tremendous experience. Because I'm always reminded about the strength, abilities and compassion of those who work here in the various systems.

I need to be reminded that there are whole whacks of people who quietly come to work every day - unsung heros of the community living movement.

So, I'm up getting ready, going through my notes. And finding a song beginning to play in my head.

Words

Words. Today I've had my emotions flung around the room, batted and battered. And all because of words. Letters and syllables, vowels and consonants put together in ways with the power to hurt, the power to heal, the power to build up, the power to tear down. Words.

Then I got home and wrote words. Said what I had to say. Responded after a period of calm. By the time I finished, I was sick and tired of ...

WORDS.

Then I read an email from Niece Shannon who was telling me about her diving into a new journal. She decided to christen the journal by writing down a list of her favourite words. I loved the image of her hunching over the book with her tongue sticking out the side of her mouth as she writes, with concentration, a list of favourite words. I wonder what they are. I wonder if she will post some of them here, in the comment section.

And because I am me, and am incredibly fascinated by me, I wondered what my list of words would be ... So I got a pen and jotted down some ideas. The list grew long, longer, longest. I've restricted myself to ten here on the blog. This was difficult because it meant culling out words that are juicy like 'slatternly' and words that are just fun to say like 'taradiddle' and words that you paid to learn at the big school like 'tautology' even words that are just simple like 'blue'. I left out some of my favourite British words like 'gob smacked'. Of course I left out my favourite cuss word ' @#$%^\ ' because, after all that's everyone's favourite cuss word. Though that was hard. But none the less after I began working in earnest, I found myself focussing less on the words that hit me today. More on the words that I like to hear, like to feel.

And suddenly I was feeling better. So my list of ten words:

10. Vanilla

09. Cantankerous

08. Convivial

07. Erstwhile

06. Loyalty

05. Faithfulness

04. Constancy

03. Sanctuary

02. Trust

01. Honour

So, I'm a wee bit curious. Do you have favourite words? Crunchy words, Yummy words, or Sweater words (they keep you warm in the cold)?

Couple of Minutes Time

"I'd like to meet your son," I asked.

"But you won't get anything out of him," she said.

"Nevertheless, I'd like to meet with him anyways," I insisted.

She had brought her son to an intake meeting and waited with him in the reception area until we were ready. We could hear him making sounds and moving around. We could hear mother, voice desperate, trying to get him to sit quietly. When we met with mom he waited in the lobby with the assistance of another staff. She spoke quickly, answering our questions with efficiency. She'd done this before. This was an intake meeting and she wanted to impress us with her son's needs and the stress he presented to the family.

Then, done, I wanted to meet him, alone.

She almost told me that he couldn't manage it, but stopped herself after protesting that it was pointless, and called him to the room.

He took a seat, she took a worried look at him and left.

Communication is not a skill he has in great abundance. He only says a word or two and makes vague gestures. I drew a couple of pictures but could not get him to attend to the pictures enough to point to either one of them although he'd dutifully place his hand on the page. He sat quietly as I talked to him, inattentive to my words but unworried by being alone in a room with two strangers (myself and the agency staff). After a few minutes trying we called mom back to the room.

I told her that she was right, he didn't communicate much to us.

But I didn't feel like it was a failure and I wanted her to understand that.

It was still important for us to meet him on his own.

She nodded and said, "No one has ever wanted to try to talk with him alone before. I didn't know what to think. But thank you for trying."

How do people serve those they don't meet? He may not have said anything to me. He may not have pointed to a single picture. But I learned about him.

I learned he does not suffer extreme anxiety when separated from his mother.

I learned that he has enough autonomy to exist on his own.

I learned that he did not have a fear of strangers.

I learned that he could control his anger and aggression in strange new circumstances.

I learned that he could understand the request to point even if he didn't follow the request to look.

I learned that he could engage in eye contact when asked, and that he smiled appropriately at little jokes.

I learned that there was someone in there, behind the pretty massive disability.

That was worth a few minutes of my time.

I'd say.

Across The River

At the last minute, I decided to get a haircut. We were just about to go grocery shopping and I realized that we were just across the road from the mall and the salon where I go to the groomers. Over we went, Joe went and checked our lottery tickets (still paupers) while I endured a hair cut with someone who wanted to chat.

The best thing about the salon, besides the fact that it's totally accessible, is that it's right beside Teopia, my favourite shop in the mall. The clerks are friendly and I love trying different kinds of teas. We hadn't been there for awhile so I went in and browsed, looking at the new tea pots and tea caddies. When we arrived there were only two other customers in the shop. Two elderly women who were aghast at all the tea paraphinalia that abounded on the shelves.

Done shopping I was heading to the counter to order tea when a guy, maybe 24 or 25 in a sophisticated wheelchair came into the store. He had an adapted joystick that allowed him to steer the chair and he was accompanied by another young fellow and a very pretty young woman. I don't know the relationships that existed between the three of them but I can say they were all obviously in, at least, like with each other.

It was the guy in the wheelchair that was the tea expert and the others gently mocked him. At first he didn't notice me as he was wrapped up in his companions and their conversation. When he did notice me, he got an embarrassed look on his face. Kind of like, "Oh, no, people will think we came on a outing together."

He moved his chair quickly up to the counter and ordered a couple of specialty teas. His friends, caught unaware by his quick movements asked if they weren't staying for a tea. He just tersely shook his head. The teas were scooped into bags, weighed and cost calculated - one of the friends got his wallet out and paid and then slipped his wallet back. They left the store, full of tension.

I felt like, somehow, by being there - I had ruined his time with his friends. I wonder why he thought that he'd be diminished somehow if he was seen in company (or even near) someone else in a wheelchair. Would he be more valued if his friends were all two-footers instead of four-wheelers?

There was something incredibly sad in his disacceptance of me, a disabled guy, occupying the same space that he did. Suddenly his relationship with the other two, the real two, became desperate in my mind - his desperate need for the company of those who walked. His desperate need to borrow their value.

In the Bible we are admonished "to love your neighbour".

Well, buddy, I AM your neighbour.

Those two live across the river.

Coffee

"We'll stop for a coffee at Subway."

"No, I want to go to Tim Hortons."

"You want to go to Subway because it's on the way home."

"I always go to Tim Hortons."

"Tell you what, we can go to Tim Hortons next time."

"I don't like Subway."

"Their coffee is the same as Tims."

"No it's not."

"You have to learn to be flexible, besides Subway is on our way."

"But I don't like Subway, I always go to Tims."

"I've had enough of this now, we're going to Subway."

"It's supposed to be my choice."

"You do have a choice, go to Subway or go without coffee."

"OK."

"That's a good decision."

From the moment this conversation began, you knew two things. Who had the power. Who was going to win. This is an actual conversation that I overheard while being out and invisible (as we disabled people are) in the community.

No, I didn't intervene, didn't say anything.

First, I thought the woman with a disability did a good job of speaking up for herself. She asserted herself well, remained calm during the discussion. She only gave in when it was clear that her continued protest would end in actual punishment.

Second, I'm guessing the staff had a reason for wanting to be back at the house, to go to the closer spot for coffee - why didn't she say so. I mean plans change, life throws curve balls - couldn't she say, I've got to get back to the house earlier than expected, sorry but it'll have to be Subway. Instead of explaining she tried to use force, coercion and confusion. In the end it was her power over the other's dependancy. How do you feel good about that kind of interaction?

These little interchanges, forgotten in a few minutes by the staff (parent) leave a lasting impact on the self esteem of the person with a disability. She walked out of the store with such a sense of disappointment and defeat. Following along behind like a chastened puppy. It was hard to watch. What was harder though, was to realize that the staff didn't even get what they'd done to her. The staff just looked pleased that the issue was resolved and that they were on the way to Subway.

When will we finally understand.

It's isn't ever really about the coffee.

Reclaiming Justice - the conference

Oddly I am more nervous at a conference where I am a host rather than a conference where I am the speaker. As the guy up front talking, I can be blissfully unaware of all that goes on with registration, with sound, with the various needs of the various attendees. As a member of the team putting on the conference, there's always one more thing to think about, to worry about, to make sure gets done. If Rose is reading this this morning I know she is rolling her eyes at what I just wrote, because if I think of something, worry about something, I tell her and she makes sure it gets done - but I digress.

Mark Pathak and Geradine Monaghan were here in Toronto presenting on the Liverpool Model for supporting people with disabilities in telling their stories in court. Their model has been spectacularly successful, by the numbers, in that they have supported many people who have been victimized and have seen their testimony turn into convictions of abusers, rapists and victimizers. The stories, though most with victorious (although not always happy) endings, are incredibly painful. People with disabilities, men and women, brutalized, victimized and raped. People chosen for assault most probably because the perpetrator expected them to be a good victim, a silent victim.

I imagine the look on the face of someone, whose face shows a mixture of arrogance and brutality, reacting in shock when someone they thought simple gives complex testimony. I imagine the look on the face of the defense attorney when someone they thought weak has the power of truth. I imagine the face of someone with a disability hearing that their brutalizer will go to jail based on the strength of their strength. Such imagining helps me get through the presentation.

Just after lunch Vita's Executive Director, Manuela, breifly describes the work being done at Vita and then the Vita Personal Development Committee gets up to do a presentation about the educational programmes we have in place for those with disabilities in our care. Abuse prevention, relationship training, anger management and self esteem. Mark had made comment earlier in the day, not knowing that he was perfectly setting up the team, that so many of the people he supported through the court system didn't have vocabulary that enabled them to well tell their stories, they'd been denied the dignity of words like 'penis' and 'vulva'. So many didn't know about the word 'no' and the word 'rights'. His little comment must have been echoing in the ears of those watching the Vita team present. It became clear that here, at least, that wasn't true.

Then the Rights Committee, comprised of people with disabilites who recieve service, along with their support team, got up to present. The entire committee had been invited to attend and the acting president Ryan came up and addressed the audience followed by eight or nine other members of the committee. They each carried a placard that had a right they thought was important. They received and enthusiastic round of applause that they had earned and deserved.

They proved that people with disabilities need only opportunity and support - with those two things they can go places that have been barred to them for years.

Places like ... the halls of justice.

Joe's Feeling Whiny

We got home late last night from Joseph's graduation. Now we've got to rush over and get an early start with getting set up for the conference today. I've two blogs I want to write. But I want to write them not in a rush, not having just woke up and not while thinking of other things more important.

And definately not with Joe packing things muttering, "Couldn't leave the blog for one day, no, but it's OK I'll do EVERYTHING in getting us ready."

So, if you are craving a hit of hingsburger, I wrote a blog yesterday which you may not have seen because it's on OUCH the BBC disability website. So scroll down the side of my page and you will find their web address. Once you get to the page look over to the blog section and click on 'Getting Disability Wrong' ... that would be my snappy title for my snappy blog.

"I'll take this luggage down to the car and you better have your butt in the shower when I get back, we don't want to be late ..." (Joe again.)

See you all tomorrow!

The F'Bomb Post

On the way out of the doctor's office, he spotted Joe sitting in the waiting room. "I should get Joe's blood pressure," he says mostly to himself. So even though Joe didn't have an appointment he was called into the office. I just wheeled myself over to the elevator and went down to the lobby. A few minutes later Joe was beside me telling me that the doctor wants him to wait another half hour and have another test. It seems that his blood pressure was so good that the doctor wanted to assure himself that it wasn't an anomaly. He helped me outside to sit on the sidewalk and people watch while he went upstairs.

At first I sat at the edge of the curb but soon realized that all the action was happening behind me so I began to pull myself back to the wall of the building. The sidewalk is wide here and there's lots of room so I could easily park and others could pass in front of me without any restriction to their passageway. As I was pulling back I noticed a nice lookingish man of about 28 or 29 rushing towards me with an intent look on his face. He clearly was in a rush so I stopped to let him pass. He had adjusted his gait in anticipation of my moving so when I didn't he stumbled a bit. He glared and me and said, without breaking stride, "You people are always in the way!"

His comment meant to slap me merely pissed me off. Who the hell does he think he is? And does he know that his mother is ashamed of him?

I sat there against the wall stewing. Then I realized something as I watched all the inaccessible transit go by - streetcars that I will never again ride. I looked at all the inaccessible shops and stores across the street from me - places that I will never again enter. I looked at all the faces going by, most worn by people who couldn't look me in the eye - attitudes that freeze me out of humanity. And I realized. We aren't in the way enough! As a minority we are way to accommodating and way to polite. We use gratitude as a motivator and have been taught that anger is inappropriate.

We need to get in the way a hell of a lot more. Sit in front of buildings we can't enter and ask "Why?" Protest a special bus mentality of an entire city. I'm not one of those cripples who's constantly angry, I'm one of the optimistic ones - not blind to prejudice but not willing to wallow in it every day. Yet every now and then I get riled up ... find my desire to protest loudly and proudly. Bring on an action, just let me have time to organize transit!

So, what to do to protest this little slight by this little man?

All at once, dear readers, close your eyes and send him this message ...

GO FUCK YOURSELF.

For Dawn, Who Understands Why

"You get hired to be needed."

I don't remember who said this to me when I took my first job in the world of disability but it, and the discussion that followed, stayed with me. She went on to explain that the needs of those in my care would often seem to outweigh the needs of my family, my friends, my very self. I was to be careful to ensure that I understood where the line was that separated me, the person I was, from it, the job I had. I was not my job, my job was not me. Keep it straight. Don't get addicted to what the job demands.

Good advice, but advice I did not follow. Over the course of time I started making decisions that were unhealthy - emergencies always happened on days off, the beeper rang at really, really inopportune times, I called in on holidays, was in constant contact with the office. I'd get home from work and spend an hour or two on the phone supporting people who were supporting people. This is not bragging, this isn't even exceptional for those of us in the field of caring. I see people doing this all the time. Overworked, overtired, people.

And parents! I consulted to family after family wherein the exceptional needs of the child had taken away the taste of vanilla. The focus on the child was impressive but, over time, had become almost obsessive. Unhealthy tired moms and dads, unhealthy tired staff.

Then I made a really bad decision. My friend, best friend I ever had, Bob died of AIDS. His funeral was set on a day I had booked to do a lecture. The day his family and friends gathered to celebrate Bob's life and mourn his death, I was standing in front of an audience making funny. I realized, years later, that if I had cancelled the lecture no one would now remember. I will always remember that I didn't attend my best friends funeral. So will his family. So will his friends.

Conciously I have worked to make healthy decisions. This Thursday is Joseph's (Mike's son, kind of our foster grandson) is having his grade 8 graduation. We were invited as we are always invited to these kind of events in Joseph's life. We've never made one of them. Ever. We are always travelling somewhere, lecturing somewhere. Well, this Thursday, Mark and Geraldine arrive from Liverpool to lecture here in Toronto for Vita. I had planned to pick them up at the airport, welcome them to the country.

I told Antonella, Joseph's mom, and Mike, Joseph's dad, that we'd have to let them know about attending. I stewed for a couple of days. I really wanted to go. But I was really needed at work. So, I talked with Rose at the office. Rose and I have been working on this conference together and I totally trust her instincts. I explained the dilemma. She looked at me and said, without a moments hesitation, "You go to the graduation." Still not sure, I talked with Manuella, she said, "You go to the graduation."

I said, "Yes" to Joseph and "No" to the job.

But guilt overwhelmed me. Finally I wrote Mark and Geraldine in Liverpool and explained why I wouldn't be there. Got an immediate email back saying 'Same decision we would have made' and wishing us a good time.

So we're going to the graduation.

The world isn't falling apart.

So to tired parents out there - plan a day off to run in the park, to do something completely for yourself. Remind yourself of the taste of vanilla.

So to tired staff out there - take a break, plan a break, enjoy the break.

Choose to say 'yes' to your needs every now and then. Because, after all, there is a reason they are called 'needs'.

Grateful Tuesday

I wonder if you all know how much you mean to me. I know that we are strangers, connected only by magical electronic and technical wizardry - but through this blog and your comments I feel like I've come to know several of you - to value all of you. The main reason we are moving from this house to an apartment in the city is the isolation I feel as a disabled guy - the sense of aloneness and dependance that I now have. I realized yesterday when reading comments on my blog about Eric's visit (and tearing up at your stories) that this blog has been my way of connecting with the world after I became disabled.

I began writing Chewing the Fat after talking with Belinda Burston who I've known for years and who has a personal Christian blog http://www.whateverhesays.blogspot.com/ and introduced me to the idea. She became my blog mentor and managed to put me on the path that led to this blog and our (yours and mine) relationship. I resolved to only write a blog for a year but when the year passed I found myself still getting up each morning and writing something. I became much more watchful and thoughtful in my day, waiting for blog moments. I began to see things in the world that I wouldn't have noticed before. Part of this was because of my new status as a disabled person and part of this was because I knew I would need something to write about in the morning.

Then, over time, I began looking for comments from some regulars. Wondering what they thought of a piece. Feeling like there was a bit of contact really mattered and matters to me. It's a way of being in the world, a way of having more when sometimes you feel like less. Over the last few days I've been feeling this real warmth towards you all and didn't know how to express it. Every time I tried to blog about it, I sounded weird or needy. But to hell with how I sound. I want to say, 'Thanks' ... for reading and especially for commenting.

Many blog writers respond to every comment in their comment section and, you will note, I do not. When I visit bloggers who do, I feel guilty. What with the pressures of living, working full time (and a half) and the need to make sure that we don't end up in a life with Joe sitting in one room and me in another - I have time enough for writing a blog, checking in to read comments and that's about it.

So I wondered if you all thought I didn't care, or didn't read your comments (I do, often over and over) ... Well, now you know the secret, I probably need you more than you need me.

If that makes me seem needy, well then, perhaps I am.

He Still Loves Me

I've been really, really sick this weekend. I've been so nauseous that it's been difficult to concentrate on anything. I'm a little better today. I think it's because of last night's visit. Long time readers will remember Eric, my little dog, who I loved completely. He was an abandoned, beaten stray that came into our lives and immediately began setting things right. He loved us each the way we needed to be loved, watched out for us - spotting bad people in an instant and giving himself over to the job of being our companion.

When I got the flesh eating disease all those years ago, Eric was a big part of my healing. In fact the doctor thinks I'm well and alive because of him. But that's a story I only tell in person and only tell to a few. Needless to say, though, during the healing process he was beside me constantly. He alerted Joe to when I needed him - even when I didn't know I did. For almost a year after getting back on my feet, when coming home from a trip, Eric insisted that I drop my pants and he smelled my leg, examining it back and forth, looking for any sign of illness. It was only after this review that he would greet us properly.

Eric's death was one of the most difficult things I've ever endured. Both Joe and I openly wept and greived. His ashes are here with us and he will be buried with us. I miss him every day, and think of him several times a day. God sent us that little dog. I curse whoever beat him, whoever abandoned him but I thank life that it was to my arms he came when we saw him in that parking lot.

But last night, I woke into a dream and Eric was beside me. Cuddled up against me. For an hour I petted him and felt his warmth against me. I saw his eyes, again, looking at me with love and concern. I told him the 'three stories' that he liked to hear. How he came to live with us, how he got his name, and the 'other' one. The dream I woke into was of a world that was still populated by one little dog, with barrel chest and spindly legs, with floppy ears and greying snout.

When I woke into the real world, Eric was gone again, afresh, but I was feeling better. The nausea had abated a bit and I can conceive, easily, going to work.

But the oddest thing was, when I ran my fingers through my hair this morning, I'm sure there was a bit of brown fur there.

A Quick Blog for the Day

Feeling a little unwell this morning so I stole this idea from Niece Shannon (http://www.halfsoledboots.blogspot.com/) as a way to get a blog done and have some fun at the same time. I read constantly and try to vary my reading. Though right now I'm on a 'disability jag' having finished Lottery (about a man with an intellectual disability who wins the state lottery) and begun Edgar Sawtelle (about a man who is mute and raises dogs) with October waiting (about a guy disabled by polio). I was asked by a woman in Butler to list the books done by the disability book club at Vita, so now seems to be the time, we've done Speed of Dark, Diving Bell and Butterfly, Too Big To Miss and are now doing The Girls. I've been lazy and not listed author's names, if you really want to find one and need a name, let me know.

Also want to mention, to those interested in disability fiction that my favourite literary character with a disability is Matthew Shardlake who stars in a series of murder mysteries set in King Henry the VIII's court. I've read all the books in the series and a new one, Revelation, has just come out and is in hardcover. I'm willing myself to wait until it's in soft cover, I will probably fail. My favourite disability book of all time is probably Precious Bane but Thread of Grace is pretty close to the top as well. Currently on order from Amazon is Accidents of Nature about a summer 'crip camp'. The disability book I'd most like to read is Skallagrigg but it's out of print (if you have it and want to swap books, I'd be thrilled.)

Well, this was meant to be a non blog day, cause I'm feeling a little unwell - so here goes ...

These are the 106 books most often marked as "unread" by LibraryThing’s users. I've read the bold ones, I've put a question mark beside the one's I've never heard of and an exclamation mark beside the book if I loved it. Shannon mentioned that she never before felt such an urge to lie while doing the task - I too wanted to claim to have read some of the below, but what the heck, you already know the worst of me ....

Jonathan Strange & Mr Norrell

Anna Karenina

!Crime and Punishment

Catch-22

?One Hundred Years of Solitude

Wuthering Heights

The Silmarillion

Life of Pi: a novel

The Name of the Rose

Don Quixote

Moby Dick

Ulysses

!Madame Bovary

The Odyssey

Pride and Prejudice

Jane Eyre

The Tale of Two Cities

The Brothers Karamazov

?Guns, Germs, and Steel: the fates of human societies

War and Peace

Vanity Fair

The Time Traveler’s Wife

The Iliad

Emma

The Blind Assassin

!The Kite Runner

?Mrs. Dalloway

Great Expectations

American Gods

?A Heartbreaking Work of Staggering Genius

Atlas Shrugged

Reading Lolita in Tehran: a memoir in books

Memoirs of a Geisha

Middlesex

!Quicksilver

Wicked: the life and times of the wicked witch of the West

The Canterbury Tales

The Historian: a novel

A Portrait of the Artist as a Young Man

Love in the Time of Cholera

Brave New World

The Fountainhead

Foucault’s Pendulum

Middlemarch

!Frankenstein

The Count of Monte Cristo

Dracula

A Clockwork Orange

Anansi Boys

!The Once and Future King

The Grapes of Wrath

The Poisonwood Bible: a novel

1984

Angels & Demons

The Inferno (and Purgatory and Paradise)

The Satanic Verses

Sense and Sensibility

!The Picture of Dorian Gray

Mansfield Park

One Flew Over the Cuckoo’s Nest

?To the Lighthouse

Tess of the D’Urbervilles

Oliver Twist

Gulliver’s Travels

Les Misérables

The Corrections

?The Amazing Adventures of Kavalier and Clay

!The Curious Incident of the Dog in the Night-Time

Dune

The Prince

The Sound and the Fury

Angela’s Ashes : a memoir

The God of Small Things

A People’s History of the United States : 1492-present

Cryptonomicon

Neverwhere

A Confederacy of Dunces

A Short History of Nearly Everything

Dubliners

The Unbearable Lightness of Being

Beloved

Slaughterhouse-five

The Scarlet Letter

Eats, Shoots & Leaves

The Mists of Avalon

Oryx and Crake : a novel

?Collapse : how societies choose to fail or succeed

!Cloud Atlas

?The Confusion

Lolita

Persuasion

Northanger Abbey

The Catcher in the Rye

On the Road

The Hunchback of Notre Dame

Freakonomics : a rogue economist explores the hidden side of everything

Zen and the Art of Motorcycle Maintenance : an inquiry into values

The Aeneid

Watership Down

?Gravity’s Rainbow

The Hobbit

In Cold Blood : a true account of a multiple murder and its consequences

White Teeth

Treasure Island

David Copperfield

The Three Musketeers

Thank's Butler

It was an amazing two days in Butler. I spoke in a wonderful theatre on campus of the local college. It's always an intimidating ride, rolling backstage in a real theatre with the large black curtains, the curious markings on the floor and the dressing rooms. I joked with Joe that I should go back at breaks and change my shirt, a costume change to keep them interested. There in center stage, up near the front, was a table and a glass of water. I sat there and pulled out my notes and readied myself for the day. By the time I'd got my tea set up, had my notes arranged, it was time to start. There were 350 in seats waiting. I swallowed my nerves and began.

From the start the audience was warm and welcoming. During question times they were also inquisitive and challenging. I love an audience that will talk with me. At times it felt more like a fireside chat than a lecture to 350 people. I realized I was having a good time. The next day I was back in place and so were they and we began again. The first day was on sexuality, a fun workshop, today was on abuse prevention - a much darker topic. I worried, needlessly it turned out, that 'they won't like me' when the stories aren't funny. But again, they embraced the material as I went along.

Somewhere during the day I was talking to Manuela about the upcoming AGM for Vita and about the statistics she needed from me for the report. I told her that I had emailed everyone and would have them for her quickly. At lunch time I hooked my computer up and was able to use the college's wireless provider to check my emails. I had most of what Manuela wanted and was stunned by the numbers. We'd offered Relationship Training and Abuse prevention to over two hundred people with disabilities within the agency last year. That's OVER two hundred. I knew that we'd been busy but that number blew me away.

There was more fire in my gut when I started again in the afternoon. I was talking about abuse prevention in Butler but I was DOING abuse prevention back home. I wasn't just someone who talked about an idea, I was someone who was actively doing something. It felt good. I knew it could be done. I think that shone through my presentation because when I finished, 350 people stood and applauded.

I never know where to look when this happens, it doesn't happen that often, because I know that they are not applauding me. I know that they are standing up and applauding as a signal that they too get it, that they too want a safe world for people with disabilities.

We got in the car and drove home, sitting quietly for a long time. Somewhere about 50 miles along Joe took my hand and said, "Good day, huh?" And for some reason, I began to cry.


***

Fab - who often posts comments here wrote two blogs about the Butler presentions including a nice one about Joe. If you'd like to see her take on the two days please visit http://fab-searchformeaning.blogspot.com/

On Lookout

He didn't notice her. She had hid herself out of his view. Her very presence annoyed me. We are in ths Pittsburg Mills Mall having lunch at Johnny Rockets. It's early Wednesday afteroon and we had arrived at our hotel in Butler with loads of time on our hands. This mall had a store we were looking for (Brookstones) so we decided to drive the nearly thirty miles to have lunch, shop and then meander back to the hotel.

We love Johnny Rockets, a burger joint that offers vegetarian options on all their burgers, and we always look for it when we are travelling. There is an elderly woman in the wheelchair blocking the entrance way so we have to scoot around the side of another table, moving all sorts of chairs. She doesn't notice and we don't mind, she is deep in friendship with the other woman and they talk, gossip and laugh through their entire lunch. I'm not sure that they were aware that there was a world outside thier relationship at that moment.

They set up Johnny Rockets to have a place where take out orders and be made or picked up. A young man, maybe 13 or 14 is nervously approaching the counter. When he gets closer we can see that he has Down Syndrome and he is entirely focused on getting to the counter an placing his order. A bright young thing of a waitress approaches him and saks 'what are you having honey'. His face screws up at the word 'honey' but he proceeds to order. He begins with ordering a vanilla shake, she asks him 'what size' and he's momentarily confused. She shows him the two sizes and he picks the bigger one. Then he orders fries. 'Do you want a burger?' 'No, nothing else."

A pretty normal exchange except that his mother was hiding behind him, watching. When he finsihed his order she had returned to a table in the food court where she was talking and laughing with friends. I made a snide comment to Joe about her stalking her own son. He looked at me surprised and said, "Weren't you watching her?" I admitted I had not, I was watching the boy. "She wasn't watching him, she was watching the staff, once she saw that they were going to treat him ok, she left. She trusted him, it was the waitstaff she didn't trust."

OK, Mom, I'm sorry - we live in a world where trusting others is a real issue.

But at least you can trust your son.

But now he needs to learn to watch others as carefully as you do. Because ultimately, that's his job.

Doesn't She Know

I was in Borders, tickled pink at my purchase. I wasn't going to let some rude woman and her rude brood make any difference to my mood. I had the book in my bag and was pushing over to the line up for the till. I saw Joe sitting out in the mall people watching as I shopped. He looked relaxed, that pleased me. A young mother carrying a stack of books along with a girl of around 8 and a boy of around 14 each of whom had a book or two, sees me headed for the line and then takes off like a shot. She arrives just before me, squeaks by my wheelchair and are now at the head of the line up. How's that for a victory - quick abled bodied people beat out fat guy pushing his own chair. There must be a reality show in there somewhere.

But I don't care, I tracked down a book that I've been waiting to read. A book with a primary character with a disability - a book spoken of as literature by all reviewers. I'd watching for it to come off the 'too be released' list at Amazon and here I have it in my wheelchair bag. I become surrounded by nuclear family as a woman a little girl pull up behind me. There is something about the child's voice I recognize. Like an accent from a country I've visited an enjoyed. I listen harder, then glance to look. Sure enough we've a tyke with Down Syndrome. A chatty Cathy of a girl. Mom is smiling but in the way that mom's do to encourage without actually listening.

The woman in front loses patience with her daughter, "You need to shut up now, it's times like these that I can't believe I gave birth to you. There's a decision I'd like to take back sometimes." Shock trailed through the line up. Then the boy got a withering attack, "you were useless as a child and it looks like your going to be useless as a man.'

I looked at the woman's face, expecting to see hate there. I didn't. I saw something worse. Pleasure. She was taking pleasure in what she was saying. I looked back down the line. Everyone had the look that I was sure was on my face, "I want to say something but I'm afraid I'll make it worse, later, for the kids."

Then she started up again. The little girl, with Down Syndrome, behind me whispered to her mom in that whisper that only children can do -that whisper that can be heard on the next block.

"Mom, doesn't she know that people can hear her?"

Well she heard that and spun around looking for the speaker, who was hiding her face in fear behind her mother. She took a breath to speak to the little girls mom, who just quietly said, "Don't."

Standing there, waiting as time crawled like at the speed of a government acting on a promise, she was entirely alone. She knew what she looked like to all of us in the line up. She knew that her kids had been thrust away from her.

Realization - I hope so.

I would edit, because well, I would edit, what the little girl said, though ...

"Doesn't she know her kids can hear her?"

Papa Joe's

Right now I'm in Erie, Pennsylvania getting ready to head down to Butler to do a couple of presentations. We left last night so we could have a liesurely days travel. As we get older we have the distinct desire to be kinder to ourselves. Upon checking into the hotel we picked up some delivery menus from local restaurants. They had the usual choice between cultures - Italian Versus Chinese.

We see maybe a thousand of these menus over the course of a year and they are all tiresomely similar. But one, here in the stack, really stuck out. It's for a place called Papa Joe's Pepperoni Cafe. The menu looks like it was designed with care. There is a lovely graphic of the sun, moon and stars. You know, without going further, that hippies had something to do with the founding of Papa Joe's.

What was remarkable was the selection held within - firstly lets look at the toppings, the list includes all the usual plus:

sweet potato, black beans, eggplant, asparagus and corn

Further they have the usual choices of meat versus vegetarian - and their vegetarian is pretty much like other vegetarian pizzas from other restaurants around the globe. But ... look at these two choices:

Ranchero Vegano (the vegan treat with heat) fresh dough topped with ranchero sauce, black beans, corn, pineapple, tomato, green peppers and onion

Vegan Demise - topped with our own hummus, extra garlic and oil, curried sweet potato, tomato and onion

OK, now that's almost obscene.

So, what's the point?

Accessibility, diversity and a willingness to welcome all. The restaurant doesn't make any big deal in the write up on the cover that they welcome those with a variety of diets and a variety of tastes. They just do. They don't separate the listing into meat, vegetarian and vegan, they just present their bill of fare without any real fanfare. Amazing. Freaking amazing.

I love it when I find, somewhere, by happy accident that someone has bothered to think about the vastness of the community, the needs of all and attempted to make a place for everyone at the table.

Papa Joe's is to me a good example of what it is to be responsible and thoughtful.

Cool, huh?

***

I wrote the above and then just before publishing the post a thought occurred to me. What if I write this and it turns out that Papa Joe's isn't wheelchair accessible. OOPS. So I scheduled this for publication in 20 minutes and then went away to search the restaurant on the web. I discovered not only is it wheelchair accessible but it is a distribution point for the local gay press as well.

Accessibility is an attitude.

Questionairre

I don't think I really noticed before I got my very own blue badge how many people park illegally in the disabled parking spots. I've found myself now incredibly vigilant about it, not only do I check every car in those spots to see if they've got the badge, I also watch people get in and out to see if they have a disability. (Please don't give me a thousand comments about those with invisible disabilities ... I know that there are disabilities that aren't immediately evident.) So, with my little fixation, I was pleased to get this in my email from a friend who thought I'd enjoy it. I thought it was funny, I'm running late this morning so I thought I'd use it as my post today.

PLEASE COMPLETE THE FOLLOWING QUESTIONAIRRE AND FAX IT TO 1-800-EAT-SHIT

You are parked in a space clearly designated for disabled persons. Please circle the statement which best describes your disability:

1 - I am, simply, an asshole.

2 - I suffer from terminal laziness.

3 - I have My Needs Are Greater Than Yours Disorder.

4 - My inner child was bugging me for ice cream.

5 - My shoes are too expensive to walk in.

6 - Wheelchair symbol? I thought it was a rocking chair!

7 - My religion forbids acts of common courtesy.

8 - I ignore OTHER laws, why not this one?

9 -I AM disabled... by a painfully swollen ego.

10 - My heart is just two sizes two small.

Blatent Promotion

For those in Southern Ontario:

We are only a few days away from the conference 'Reclaiming Justice' wherein Mark Pathak and Geraldine Monaghan from Liverpool will present about their work with the justice system. They have devised a process for supporting people with intellectual disabilities as they access the justice system. Their work is spectacular, innovative and groundbreaking. I heard Mark present a couple years ago when I was over in England - we were both on the bill of the same conference. I was blown away by Mark's presentation, he was funny, compassionate and practical. An extraordinary experience.

Without question I recommend this conference.

The conference is on June 20th at the Yorkdale Cinemas in Toronto. To register, or to get a copy of the flyer with more information, call Rose at Vita ... 416-749-6234.

You won't be disappointed.

Change

I waited in the gift shop, beside the front door, for the car to come around. Several people who came in asked if I needed help. I say, "No, I'm waiting for the car to come round" politely, even though their offers of assistance become annoying after a while. I am sitting comfortably in my chair and I am enjoying watching people go by. There was a lot to watch and much to think about.

Then I heard, 'out of the corner of my ear' someone say, "I can't believe how my life has changed over the last year." The speaker wandered out of earshot so I wasn't sure what he was referring to. I couldn't even tell from his tone of voice if the change was something good or something bad. All I knew was that my train of thought had been yanked from one track and set upon another.

Here I am sitting in a wheelchair waiting for a car to come round. I think it really hit me that I was was disabled for the first time. It's been three years now that I've used a chair. But that's only three years out of 55. For 52 years I walked with the rest of you. But now, certainly, I am sitting in a gift shop, looking out of the window, waiting for the car to pull up.

How'd that all happen?

I reviewed the journey from the catastrophic illness to the wheelchair. I was so grateful to the chair when it first appeared in my life. When Joe rolled it into the room in preparation of getting me out and down for a tea, I almost wept with relief. I was getting out of confinement and into mobility. The best way possible to have a chair introduced to your life.

But now, sitting in a gift shop, watching others go by and waiting for the car - I realize how much my life has changed. I don't even think of doing some things that were natural to me for 52 years. Only hours ago I had looked at six stairs up and then 5 stairs down and felt that I was facing an obstacle that no amount of positive thinking would lessen.

A stranger's voice asked me to think about that for a second. About the mammoth way my life has changed. And yet not changed. I am still who I am, who I was - but different. I still do what I do, what I did - but differently. I think I notice more now than I did before. I think I think more now than I did before. I care less about some things, more about others. But that would have come with age anyway, wouldn't it?

The car pulls up and I see Joe get out to come up and get me. I hit the button that opens the door and push myself out into the sun and the heat. There is a gentle slope down to the car and I use my gloves to slow the descent but I enjoy the ease of movement and the gentle breeze that I feel on the way down to the car.

I can't believe how much my life has changed.

Not Here, Not Yet.

When I first heard that there was going to be an exhibit on disability history at the ROM (Royal Ontario Museum) I was excited. As people with disabilities are still only on the cusp of being considered a legitimate minority - the suggestion that the 'people' who have disabilities have a specific history goes a long way in establishing the arguement for the concept of a 'disability community'. I knew that it would be several weeks before I could attend as my travel schedule has had me away for much of the time.

But this weekend I had time so we hopped into the car to head down to Toronto on what we were jokingly calling "an outing". We arrived at the museum and Joe set me down at what we later discovered to be the old entrance. When he, and the friend who had come along, parked the car and came and got me, I had been enjoying sitting in the shade and watching people go by. We wheeled around to the front entrance and our experience began. Several tourists in the line up seemed absolutely shaken by my existance. I don't know what language they spoke but pointed fingers and staring eyes are a universal way of saying, "Look FREAK."

The fellow taking our money was also discombobulated by the disability thing. He first charged us 60 bucks, that's 20 each, then looked at me and said, "You have a disability?" Um, yeah. Then he explained that my 'attendant' didn't have to pay so he reduced the cost to $40. Well, OK. He then told us that we should consider going to see the Darwin exhibit and some other exhibit (didn't catch the name). I said, proudly actually, that we were there to see the disability exhibit. I swear, really I swear, he almost rolled his eyes. Why he mentioned those two exhibits and didn't mention the disabiltiy exhibit is beyond me. But he dutifully, and only after we asked specifically, drew a circle on the map to show us where the exhibit was.

We went into the foyer as Joe had to hit the washroom and then I asked the two of them to come round and see the old entrance to the museum. I told them the story of the ramp there. Years ago when I worked as a classroom assistant for kids with physical disabilities, I was an attendant on a trip to the ROM. We went up the long ramp outside only to find that there were three or four stairs and no ramp inside. So the outside ramp was really only for decoration. Instead we had to make our way around to the back entrance of the museum. We got back to the school and instituted a letter writing campaign and ... ta da ... got a ramp. We were there for disability history, after all, and I wanted to share a bit of my own.

We noted an elevator in the old lobby so we took it up to the third floor. After exiting the elevator we rolled along a few feet to a set of six or seven stairs up beyond which we could see the exhibit but there was no way we'd be able to get me up those stairs. So we took the elevator back down and rolled over to the 'MAIN ELEVATORS' and took those up. Exiting those elevators we were faced with a choice, turn left, turn right. We turned left and found ourself, now, on top of a set of stairs. They had an elevator there but it was one of those 'for disabled only' elevators that are never left on - always need someone from the staff to operate. I sat there as the other two went in search of the way to the exhibit.

Joe came back and said he'd discovered the way. It was an extrordinarily long walk, poorly marked, but we stumbled upon the exhibit. We noted, with some frustration, that there was an elevator right there, right beside the exhibit. After touring the exhibit (which I will write about in another post) called 'Out From Under' we went over to watch a video about the installation. The video was fronted by a long bench, with three sections that took up the entire viewing area. They had left no space for a wheelchair so I sat behind the bench while my companions sat on the bench. No sense in having a disability themed exhibit have space for wheelchairs to sit as equal participants - what need is there of this?

We then rode the elevator down, curious to see where it came out on the main floor. It was just off to the side of where we first rested when we came in while Joe went to the washroom.

I had some questions ...

1) Why weren't we informed about the disability exhibit as a possible choice upon entry to the museum?

2) Why was the ticket taker almost dismissive of our desire to see the disability exhibit over the Darwin exhibit?

3) Why didn't the ticket taker tell us that access to the disability exhibit was through a specific elevator?

4) Why wasn't there signage to alert wheelchair users that the disability exhibit was access through a specific elevator?

5) Why wasn't there space left for people with wheelchairs to sit alongside their friends, oops, attendants at the video programming?

6) Why was the person who was manning the disability exhibit not a person with a disability?

7) Why did I end up feeling like a second class citizen at my own event?

The exhibit was called "Out From Under" to that I say, "Not here, Not yet."

Farewell Harriet

I found out yesterday afternoon that, on June 4th, Harriet McBryde Johnson had died. It was like the world had stopped for a minute as my mind tried to conceptualize a world without her in it. She was not supposed to have lived, have lasted, have survived - but she did. Doctors told her family that she would die in her early teens. But she didn't. Instead, she became a lawyer, an activist and an outstanding voice for those with disabilities.

I became aware of her during the time of the protests against Peter Singer, the guy who believes that the world would be better off without disabled people in it, the guy who believes that killing babies with disabilities is morally less repugnant than killing a cat. I was writing a fair bit for Mouth Magazine at the time and Lucy, the editor, sent me something that Harriet had written, and I was stunned by it. The sheer force of her mind was astonishing, intimidating. I was glad, so glad, that she was on our side.

Occasionally over the years I heard of her, read her writings, discussed her point of view with others. I always thought that I may meet her one of these days. At a conference. At an action. I always thought that possible. And now, it's not. She's gone.

So, on the occasion of her death - which I am mourning at an oddly deep level for someone I've never met, I am asking you, gentle readers to pop over and read an article that Harriet wrote that I've carried with me in my lecture notes on abuse for years and years and years. It's a long article, choose a quiet time, get a cup of tea and settle in ...

http://query.nytimes.com/gst/fullpage.html?res=9401EFDC113BF935A25751C0A9659C8B63&sec=health&spon=&pagewanted=1

Rest In Peace
You Lived In Protest
Rest In Peace
You Lived With Purpose
Rest Harriet Rest

Partay!!!! It's Harry and Kevin Day

I was preparing for a meeting about the abuse of people with disabilities. While this work is important, every time I have to think deeply about it I feel like a cloud covers the sun. Just before heading into the meeting I check my emails and find that someone forwarded me a link. I check my watch, there was enough time to check. Am I glad I did. The sun shone through as I read the news story. It was about two guys.

Harry Kopenis and Kevin Lamb, remember those names. In fact I'm now declaring today the official Chewing the Fat "Harry and Kevin Day". Picture bands, floats, the mayor in a motorcard, oh look there's the Queen waving!

So what's the story?

Apparently Harry, a 71 year old dude (using that word advisedly) was at a bank machine pulling out $100 cash. A 21 year old woman appears from nowhere, obviously she had been watching the machine waiting for a vulnerable victim, knocks him down and grabs the cash. As she's fleeing away she hears a whirrrrrrrrring sound behind her. That sound is coming from Kevin Lamb's motorized wheelchair. It seems that Kevin, a friend of Harry's, saw the whole thing happen. He was angered at this woman's assault on his friend and thoroughly pissed that she just assumed that elderly disabled people are easy pickings. So he heads down the street chasing her.

Picture a 21 year old fleeing down the street.

Picture a 56 year old guy in a wheelchair hot on her heels.

Harry gets up and sees his friend in pursuit of his cowardly attacker. Even though he's on a whack of medications, his sense of injustice kicks in and he joins pursuit. The two of them are gaining ground. Harry tackles her knocking her to the ground, Kevin blocks her escape with his wheelchair. She is now in a headlock but is still kicking out at her 'victims'. They hold her till the cops arrive and she is arrested.

Picture Erin VanMatie in cuffs being placed into a cop car while two 'elderly disabled' guys watch.

Picture the looks on their faces as they feel their dignity reclaimed.

Picture Harry getting his $100 back.

I'm officially flipping the bird to all those who assume we are weak, vulnerable prey. I'm calling down God's wrath on all the news reporters who described Kevin Lamb as being 'confined to a wheelchair'. I'm calling out all the disabled community to cheer on these two guys.

Cause it's Harry and Kevin Day!

Celebrate, Celebrate, Dance to the New Day.

Open Sesame

Big, bold, brassy, are the three words that pop into mind when thinking about how to describe her. She has a voice that sounds like it was crafted together out of whiskey and smoke. In another life she'd have been a broadway star, with a huge personality and a presence that people would pay for. I like her.

I know, I know, I know that most of the world would describe her disability before any of the rest, but we all know here, that disability is a descriptor - but only one, and often not the most important one. I was chatting with Manuela about her yesterday, as I was about to tell her this story, and Manuela told me of her arrival from the institution. I felt as if the cosmos had reached down and slapped me. I only know this woman in the present tense. As a woman with a huge personality, with a little disability mixed in, as a woman who moves about her world with a noisy confidence. I forget, sometimes, that people have a history, that everyone I meet was someone the day before I knew them. I should have realized, given that Vita as an agency was built on the concept of freeing people from institutional placement, she would have come from the land of the long corridor.

But I wanted to tell Manuela this story. Simply because it made me happy.

At some point in the day a snack cart is brought around to the offices upstairs at Vita. Someone with a disability, along with a support worker, asks if we'd like to buy a snack. The choices are what you'd expect, the kind of stuff they stock at gas stations - chocolate bars, pop, chips - health food. I always bought Sesame Snacks - those little brittle wedges of sesame seeds surrounded in something sweet and sticky. I love those things. I even kept a little supply of change just for that purpose. In my mind these were not as bad as a chocolate bar, that they were halfway healthy because they had seeds, I refused to check the label, sometimes you can be two well informed and sometimes purposeful self delusion is a wonderful thing.

But then, suddenly, several months ago, maybe even as long as a year ago, the Sesame Snacks disappeared from the cart. I always asked and was told that the supplier no longer had them on offer. I would look longingly at the chocolate bars and then smile and say, "No, thanks," and bid them fare well.

I heard the cart arrive because she was the person doing the selling today. You hear her. It's impossible not to. Her voice carries. Her voice makes me smile. She went to Dunja's office, then to Franca and Ann's, all the while glancing in at me. When she's finished with them she wheels the cart around with some force, her eyes connect with mine. "I'm going to make you very happy today," she says with real excitement. She reaches to a big white box sitting on top of the cart and hauls it up, knocking things from their place. She doesn't notice the series of small catastrophes that were set off by her lifting the box out of it's place. She steps over the fallen items and plops the box on my desk.

"I got what you like today," she announces. I look in the box to find it full of Sesame Snacks. I buy 8 of them (wouldn't want to disappoint her) and pull out my money to pay. I am grinning so big that tears form in my eyes. "You've made my day!" I announce.

"I did," she said grinning huge herself, "I made your day."

She takes the money, then picks the box with the remaining snacks off my desk and plops it back on the cart. She looked at me again, "You happy?"

"I'm really happy, I love these things."

On her way out she says, "I can make him happy!!" There was absolute joy in her voice.

Joy at the fact that she could make someone else happy. That she could do something that made the world brighter for someone else. This is the essence of what it is to be fully part of the world. To know that you can have an impact, that you can make the day different for another, that you matter.

And she matters.

It's just that yesterday, she understood that.

Hoo Rah! for those moments of self esteem.

Hoo Rah! for Sesame Snacks.

Hoo Rah! that she's home for good.

Actual

Of course I do it. Every few days as a matter of fact. Certainly at least once on the weekend. Google is made for that purpose, I'd suppose. As a result, when I find myself bored or am fiddling with time like a little girl with a lock of hair, I put 'hingsburger' into Google and see what comes up. Last Saturday, home from a trip and deciding not to leave the house for the day, I was playing Spider on the computer and then decided to Google myself (that sounds racy but isn't).

There were something like 10,300 pages that referenced the name Hingsburger. Then, because I had loads of extra time, I did something I don't do. I decided to take a look at some of the pages. The first I went to was written by someone who had recently seen me lecture, and that was the subject of their blog. OK, so far, so cool. Then I plunged in to read what they had said. Not said privately to a friend, mind, but publically to the world.

I was brought up short. This was a fairly nasty attack. Not on my ideas (that I can take, even enjoy) but on me, my weight, my looks, my way of being in the world. I felt bile rise in my throat and I glanced up at the name of the person who wrote the blog. Didn't recognize the name, no surprise. Then I went for their picture. I figured we must have had a nasty interchange and the blog resulted from it. But the picture held no clue as to who this person was, I am fairly certain we've never met, never spoken. I finished the blog and was really, really upset.

Why I should worry about the rambling writings of a total stranger who decides to critique me as a person rather than my ideas as a thinker - I don't know. Why I should carry some of those words around with me, have them attached to me like the chain that Marley's ghost hauled round - makes no sense. Goodness knows I get enough praise. But, given my rearing, I mistrust praise and believe criticism.

Oddly, this week, I spent time with the team that will be teaching 'self esteem' classes for people with disabilities at Vita, we are working at developing a pre and post test so that we can measure the effectiveness of the teaching. The three of us sat and talked about what self esteem meant. One of the questions that they had come up with was 'How would you feel if someone called you a name?" What a good question - and one that I would fail, miserably.

I know that I teach others about this, but I admit that I have my own 'issues' to work through. I get that someone who doesn't know me writing a personal attack against me is, ultimately, meaningless. That their motives must be questioned more than their words. But maybe a history of being told, not called, that I was ugly, stupid, worthless -is difficult to kill and easy to resurrect.

It's four day's later and I'm still feeling bruised by the words. Joe wanted to know the blog address of the writer and I've refused to give it to him, and I will refuse you as well, I don't want a sudden increase in their stats because of me sending you there, I also - honestly (and weirdly) don't want people going there, reading those words, and then realizing 'hey, right, Hingsburger is a fat, ugly, jerk, why am I reading his blog' and you all going away.

See me in the afternoon using a wheelchair, assume that's my disability.

See me with my huge fears of inadequacy and worthlessness in the early hours of the morning, see my actual disability.

Advice

They are huge and black and strapped to the bottom of his feet. You see them, often, worn by a certain type of middle aged women who like to hike. He looks down at them and laughs. But we are both thrilled by them, even though they look like they weigh 70 pounds. Orthopedic sandels, who'd have thought.

Several weeks ago when I wrote about the pain Joe was experiencing with his feet, we got a note from an old friend, Susan Ludwig, about an orthopedic kind of place in Newmarket that she recommended Joe go for appraisal. Apparently it might be possible to avoid painful surgery by an accurate assessment of his feet and the provision of the appropriate support. Susan knows whereof she speaks so we took her advice seriously and made an appointment. Our doctor looked a bit skeptical figuring that surgery was the route to go ... but the wait list is long and Joe's pain was immediate.

So yesterday Joe had his appointment. He's been popping pain pills like one of the divas in the Valley of the Dolls so we were both pleased that he had the appointment. I wanted to go with him but I hadn't been to the office for three weeks so I decided to go in and wait for his call. To be honest I've been really worried about all this, the idea of surgery for Joe scares me deeply. Surgery for me is no big deal, I can cope with that - but any threat to him causes me profound fear. I waited and hoped.

"I feel no pain," were the first words he said. Then he described his visit and the horrid black sandels ... but for the first time in a long time he was walking entirely without pain. Neither one of us had any real faith that this would work, but you trust your friends. I hung up the phone thrilled.

We stopped at a grocery store on the way home because I had to make a vat of chili for a pot luck at work and as I pushed myself through the store I got separated from Joe who had gone to look for the secret ingredient in our chili (no I won't tell, it's secret). You know how you recognize someone you know well, at a distance, from their gait? Well, Joe no longer limped. I'm going to have to get used to a whole new cadence in his walk. Cool.

So, I've got my wheelchair, Joe's got huge utilitarian sandels, and we're both still moving through the world.

Thank heavens for adapted shoes, chairs with wheels and friends with good advice.

(Susan if you are reading this could you drop us an email, I've misplaced your address.)

68:6

So I got a few emails about yesterdays post, particularly about the Psalm that I referenced, 68:6 ... I didn't quote it because I thought it might be fun for those that wanted to know what it said to hunt it down. Mistake. There are so many translations and no guarentee that others will have Bibles with the same wording as mine that some were completely perplexed by the reference. So, here's what my Bible says ...

God sets the lonely in families

I remember reading that long ago and being incredibly and powerfully moved by those six words, six words - like "I love you" twice. The image that formed in my mind, immediately upon reading the words, was not of the traditional family at all. But of being set down in a place of family, a place of welcome, a place of belonging. That I could be, might be, would be, set down in a place where I mattered and where people were of my kind and kindly because of it.

This is where I first got an understanding of the word 'community' and why I often find my thinking at odds with the 'community living' movement. That big, huge and frightening 'community' that they seem to be talking about is exactly what I fear - it's the thing that rejects almost as often as it accepts, that throws away as often as it keeps, that hurts as often as it harbours. I didn't want that community. I wanted the smaller 'familial community' that community of brothers and sisters, that community of equals, that community of companions.

God sets the lonely in families

So much of my work has been driven by this idea. That belonging is possible. That relationships are possible. Seeing the loneliness in the lives of so many with intellectual disabilities doesn't depress me, it inspires me - knowing that everyone can be 'set' in community, in family. This week at Vita our whole team of teachers, those that teach about relationships, about handling emotion, about self esteem, about safety ... gets together. We are all driven to create people ready to embrace their own community, establish their own relationships ... people that will know what to do when ... set in families. I don't know but I wonder if this is the idea that drives each one of them too. Maybe it does, maybe something else inspires them - but it doesn't matter because it's a joyous group - I feel when with them that I have been set in family.

Honestly I couldn't tell you what the rest of the Psalm is about. I don't find the Psalms full of beautiful poetry like so many others do, I find their rhythms clunky and their wording obscure. But I do find beauty there, in phrases and ideas ... most are like bits of overheard conversations. And that's what I felt when I first read those 6 words. Like I'd overheard something beautiful being said - and tho the words weren't said to me, they were said for me ...

God sets the lonely in families

I too know what it is to be lonely and to be set in a family.

And therefore, I know, grace.

5

5 Things I Laughed at This Week ....

An incredibly tense discussion with Joe, while watching the weather channel, about the difference between cloudy breaks and sunny periods.

The smoothness with which an elderly couple ate a meal together in a restaurant on the road to Nashville, each eating favourites from each other's plate as well as their own - all without a word spoken.

Having a guy in a disabled stall yell out, "are you in a wheelchair?" and when hearing me say 'yeah' listening to him say, "Well, I'll just hurry up my shit and get out of here for you" - charmed, I'm sure.

Listening to a kid with autism tell me a joke about a fishing rod and a cat, I didn't get the joke, but he had such an intensity in telling it that it didn't matter.

The sadness in Joe's voice when he filled a perscription for a diuretic as he said, "An end of an era, no more tan pants."

5 Things I Enjoyed This Week ...

Seeing Joe come home from grocery shopping yesterday with the makings for a sugar free banana cream pie.

Getting a note that began, "Uncle Dave ..."

Writing a note to a co-worker about an important thing going on at work, feeling that even though I'm away, I'm still part of what's happening.

Finding Bentley's Green Tea at the Duty Free on the way home.

The feel of wind through my hair as I flew down a long ramp at the Opryland mall.

5 Things I'm Looking Forward To ...

It finally warming up in Ontario, the furnace is on this morning.

Talking to Ruby on the phone and hearing her say, Pizza! ... one of her few really clear words.

Getting my wheelchair oiled.

Moving back to Toronto and being able to order in Chinese food from the Garlic Pepper again.

Sleeping another night in my own bed.

5 Things that Give Me Hope ...

Psalm 68.6

The one legged bird who fights off all the other birds at the feeder.

Breath.

An email from a friend who's weathered a storm.

Pie.