Thursday, January 31, 2008


Today, I'm honoured. People with disabilities are coming from around several miles around to a four hour class I'm teaching. What is the curriculum ... well, let's see.

Saying No ...

... to abuse

... to disrespect

... to bullying

Saying Yes ...

... to making choices

... to feeling competent

... to self worth

Saying No ...

... to unwanted touch

... to exploitation

... to forced compliance

Saying Yes ...

... to pride

... to self determination

... to the right to risk

Teaching materials are simple ...

... laughter

... roll plays

... group dynamics

Today I get to do what I love to do.


And in case no one brings one, I've polished my own apple.

Wednesday, January 30, 2008

Thanking Paulette

I use it sparingly, I really like it. I bought it in Tesco on my last trip to the UK and I think it may be a home brand. It sits on my shower shelf in a square clear bottle with the dark gold liquid inside. The print, gold on black, tells me that it's body wash scented with Ginger, Vanillia and Pink Pepper. I think it's one of the nicest I have ever used. I love the smell as I shampoo my locks in the morning. I used it yesterday on purpose, I wanted to smell it. To remember.

Joe uses a soap that has a smell that I identify only with him. It's a clean, crisp smell that I just love. I won't let him tell anyone what he uses because that scent is his, he mine ... and I like it that way.

All this is bouncing around in my mind. Yesterday we are having the Vita Book Club meeting where 10 of us are getting together to discuss 'The Diving Bell and Butterfly" by Jean-Dominique Bauby. The book tells the story of a man felled by a stroke to his brain stem that left him, fully alive, fully aware, but left in a body without movement - he could communicate only through blinking his left eyelid. There is much in the book but I wanted to talk about the moment in the book where he, on a walk, smelled fresh french fries being cooked in a venders cart. How that smell overtook him. As I read it, I could smell it too. There was such a powerful subtext there about how, even with the most significant disability, it was possible to lead a sensual and sensuous life.

Joe picked me up at the office and we went over to Vaughn Mills Mall to the food court for lunch before heading over to the book club meeting. Right by the lunch area is a "Fruits and Passion" store that sells soaps, creams and other unguents. As I ate, I began to think of popping into the store to pick up something with an amazing scent to get those in the group to smell. So that we could really talk about what kind of powerful, wonderful, sensous things we could do to enhance the experience of those with profound disabilities.

I headed over to the store while Joe finished his lunch. He chews his food so it takes him longer. I got into the store and was approached by the store owner about help. I said I was brousing and she left me to enjoy the store. I picked up a small bottle that looked like it contained oil. I didn't have my glasses so I called over to her and asked what it was. She came and was explaining that it was a scented oil. She was beginning to tell me how it was used and I broke in to explain what I was doing.

I told her about wanting to find things, smells, sensations that might bring pleasure to those with much more significant disabilities. To enrich their lives with things that felt good or smelled good. Her eyes lit up. I further explained that I wanted to take something to a book club where we'd be talking about service to those with greater needs. "How many people will be there?" she asked. I told her 9. "How would you like it if I made up a little gift bag for each of them with a few samples of some of our products that might work - that have scents that are beautiful?"

I said I'd like it but she didn't have to do it. She spoke with a passion about her work and her store and that she wanted to ensure that everyone had access to things that gave them pleasure. She talked about how if people couldn't make it to their store because of disability, let her know, she'd deliever things to them. As she spoke, she and another clerk, worked rapidly to put 9 beautiful bags together full of all sorts of treats.

She asked about what agency I worked for and I told her that I worked as clinical manager for Vita Community Living Services and that we were always looking for ideas to enhance our care but mostly increase the quality of life of those in care. I told her that with all the needs of someone with a profound disability - I worry that some of those needs get forgotten or left behind. She talked about the importance of ensure that 'all of a person' needs be met. When she was done I had one huge bag that held the nine gift bags and my one tiny bag with the purchase of the oil I had originally come in for.

She got it.

Not only did she get that people with profound disabilities needed to have access to things that felt good and smelled better. That lives can be enriched by the smell of green apple ..

She got it about her customer base.

Finally, someone who understands each and every letter of the word ...


Tuesday, January 29, 2008

OK, I'm Mad!



I did a quick Google of 'Brent Martin' to see if there had been any updates on the results from the murder trial or if there had been anything much written about disability hate crimes as a result of the murder. I had heard from friends in England that the press had picked up on it and was eager to see what was there. Well, in a word, nothing.


Except I did find a piece about the Judge expressing concern about the victimizers, the brutalizers. Apparently he was concerned about their youth. He's asked for statistics on youth crime and youth violence as part of his deliberations for the sentencing. Yes, Judge John Milford, QC, is worried about the perpetrators. There wasn't a single word in the article I read that expressed Mr Esteemed Judge's concern about the victim of the violence - about the nature of hate crimes as it affects the disability community.


He's worried about OUR YOUTH. Well, ain't that a tired old 'woe is me society is going to hell in a handbasket when our youth have lost their manners and, oh yeah, murder the disabled' song and dance. Society has been worried about OUR YOUTH since I was one. I remember my Mother moaning about how YOUTH THESE DAYS are rotten scoundrels. So there sits the Judge thinking tired thoughts about a real problem.

OK Judge ... you want YOUTH.

How about Craig Sorger from Ephrata ... he was 12 years old when he was bullied and murdered as a result of his disability.

How about Ben Adams from Halifax ... he was 14 years old when a bully murdered him ... oh yeah, he has a disability too.

How about Shaowei He who was 25 when the torture she experienced as a disabled woman killed her.

How about Kevin Davies, who was 29. And Keith Philpott who was 35. Yep, they were disabled too. But maybe that's too old for you. If so then you won't be worried about ... Raymond Atherton, 40; Steven Hoskin, 39; Carrie Anne Kendall, 36; James Byrd, Jr, 49; Cristine Lakinski, 50' James McKinney, 41. I'm going to stop there - but I've got twenty more. You see, I didn't ask for a commission I did a THIRTY MINUTE INTERNET SEARCH for the names of people with disabilities who were brutally, brutally murdered.

It would have been nice if you'd just asked, Judge Milford, QC, about Brent's community. The community of the DEAD BRUTALIZED DISABLED. But no you are flapping gums about the awful state of our youth. What did they feed you at law school ... Frosted Flakes?

Why am I so angry at you Judge Milford, QC?

Well, I was hoping for more. I was hoping that Brent's death caused in you the tiniest bit of outrage. His pleading with his murderers. The lack of his ability to self protect. The incredible violence that he faced. I was hoping that in your heart you'd have had a question about how could it be that a man with a disability becomes a target for this kind of hatred.

But no.

You care about the hearts of the murderers.

You care about how they were damaged.

Not the damaged they'd caused.

And in doing so.

You've done damage yourself.

Shame on you.


Annoying Reminder

For those who have not yet voted on the Canadian Blog Awards, this is to let you know that the voting ends tomorrow at midnight PST. Chewing the Fat is nominated in two categories, Best Activist Blog and Best Blogosphere Citizen ... you do not have to be Canadian to vote for a blog. If you'd like please visit ...

and follow the instructions to vote.

Also please remember that a couple of Fat regular commentors are up for awards as well ...

Belinda Burston is up for best religious blog for Whatever He Says


Elizabeth McClung is up for best LGBT blog for Screw Bronze

The awards will be announced later this week.

Monday, January 28, 2008

Beating Me

I didn't realize what it would look like.

I didn't think about what it would mean.

This is going to be a difficult post for me to write, in truth I almost decided against it. But, I do want to document truthfully what it means to be me, here, now, in a wheelchair. I shiver at telling some truths though, and sometimes I fall short of the goal. Three months ago, I wrote a blog that exposed a part of me that I'm not so sure of, not so proud of. I finished writing it at about 4 in the morning, hit the 'publish post' button. Doubled checked that it was there on the blog and then went back to bed to read for a bit. My head hadn't hit the pillow before I was up again and erasing the post from the blog and writing something new. I checked sitemeter and saw that my blog had only been visited by one person during the hour the post was up - but I had no way of telling if that person had been on while my soul was exposed. It's weird, truth.

I am quite disability postive, I think. I'm OK with my disability, I thought. There are frustrations, of course, but those rest mostly with the attitudes of others and the structure of buildings. I like it when the villian of the piece is someone at the other end of my pointed finger. Odd to discover that the primary attitude to beat is still my own. I found this all out at the Vita staff retreat on Friday. We held it at a venue that was half restaurant, half video arcade. There were two team building times when everyone was out in the arcade - for the first I stayed back because I was giving a short lecture and wanted to prepare. Besides, the stage was ramped and I wanted to be up and on the stage before everyone got back, at my weight it's a bit of a struggle to get up a long ramp like that. Dignity, it's about dignity. For the second break I was out with everyone else.

A woman from the office stopped and chatted with me briefly. She said she was surprised to see me out with everyone, and followed by saying that she saw me as very unsocial and very 'unfriendly' because I came in, went into my office, and didn't come out again until I left. I never chatted with others, never laughed with people in the hall, I just burrowed into my office. Maybe I was just 'focussed' she said, kindly.

All this is true, except for the unfriendly part and maybe the focussed part, I do burrow into my office. You see, I don't use my wheelchair at work. It was a source of some pride to me that there was a part of my life where I was 'independant' ... where I used my legs rather than my wheels. Of course this meant that I didn't walk down to the lunch room, because I can't stand for the time it takes to cook a meal. I don't chat with people because I can't stand long enough to have the conversation. So I just go into my office. And stay there. Walk to the bathroom and back and congratulate myself on my 'independance'.

And appear aloof and unfriendly and uncaring.

I thought people would get that my disability didn't allow me the kind of freedom of movement that regular social activity requires in an office. But why should they get what I wouldn't admit? Why is that their responsibility? Mindreading is still not listed as a job requirement.


To hell with that silly stupid bit of vanity.

My wheelchair is coming to work.

I'm coming out of the office. I want to join in the ebb and flow of the office social scene. I want people to know that if I feel free to drop into their office, they should feel free to drop in mine. Work is supposed to be a pleasure too.

I'm guessing that my wheelchair is going to give back what I've allowed my disability to take.


Sunday, January 27, 2008

18 months

(Let me get that for you.)

It was huge, miles and miles of buttons and bells. A video arcade that covered acres and acres of land. There was a surreal dreamlike quality to the whole thing. I don't really get video games, although I like some of the more carny games, but it was fun wandering around watching people have fun. Joe and I were asked to babysit Ruby for a while as her mom and dad went off to play some games. We agreed and Ruby toddled off with us, her eyes full of wonder at all the sights and sounds.

(I'll reach that for you.)

Ruby was born interested in buttons. Forget games, she loves a remote control or a telephone. Not quite a year and a half and she's already better at operating the television contols than I am. So it wasn't hard to keep her distracted. She would just go up to various machines and push buttons and then stand back and laugh. A couple of times she seemed disoriented with excitement. It's great to see someone enjoying the world without having to interpret anything.

(Let me move that.)

She's settled on a game that she can't quite reach. There are huge stools bolted down in front of the game so Joe picks her up and sits her on the stool. She immediately begins banging on the four huge buttons in front of her. Joe is concerned that she will slip and fall so he holds her gently around the waist. She stops banging the buttons and a look of annoyance crosses her face. She reaches down and pushes his hands away. He lets go of her and as she reaches back to hit the buttons she begins to slip. Too young to recognize danger she pays no attention to the imminent fall and Joe takes her again in his hands to keep her from falling. Again she pushes his hands away. He realizes what she wants so he pinches the back of her blouse in his fingers so he can ensure that she doesn't fall. She goes on banging buttons.

(I'll help.)

Ruby doesn't yet speak, well a few da da's and ma ma's and a really cute hello. But she knows what it is to be independant. She is in love with her own self reliance. What she can do for herself, she does. Don't try to feed her, she can do it herself. Don't try to carry her, she can walk. Don't try to hold her steady, she can balance herself. She is a master at pushing away the helping hand and asserting her will to do it on her own.

(Here let me get that.)

The drive for independance comes early and stays late. I saw an elderly man in a store glare at a young pup who offered to help him carry bags to his car. "You think I'm an old man?" is what he said but "You think I can't do things on my own?" is what he meant.

(I'll carry that for you.)

There is no question that there are things I need help with now that I'm in a wheelchair. There are things I could do before that I can't do now. But what I can do, I still enjoy doing. What is still under my control - is still mine and I won't reliquish it for blood nor money. I have learned to ask for help when needed and do it on my own when I can. It's a very simple process.

(Here, let me move that.)

I didn't really understand, until watching Ruby play, how important it is to feel that one is competent to do what one is wanting to do. How much of our self esteem is wrapped up in pushing another's hands away and doing it ourselves. How much of pride and worth comes from knowing that we, in that moment, are all we need.

(I'll get the door.)

I didn't really understand, until watching Ruby play, why I got so annoyed when people would intrude into my life with offers of help. Wanting to get something for me, carry something for me, reach something for me ... sending me messages of dependance and trompling all over private moments with myself. I love people's helpful attitudes when I need assistance - I love it when I ask for help and someone does it without making me feel useless. But I don't love their NEED to help me, to build up THEM by diminishing me. I know sometimes I brushed hands away abruptly, maybe even a little rudely, I need to be careful of that - but now I know why.

Because Ruby isn't two.

And she wants to feel able.

So why wouldn't I?

Saturday, January 26, 2008

Passing on Posting

I've come down with a horrible flu ... trust me ... horrible. I was crusing on a high and then, hmmm, I don't feel well ... then .... toilettoilettoilettoilettoilet ... which has been my theme through the night. Damn.

All the things I was looking forward to today have had to be cancelled and I've got to spend the day trying to get better but feeling horrible while doing it.

I've sat here and stared at the screen to write something. My list of blog ideas beside me is full, but I just don't have the energy.

So forgive me your wasted visit today ...

I'm simply going to take care of myself for the day.

Friday, January 25, 2008

Ground Wood

For nearly a year, when I was 23, I worked in a pulp and paper mill in Campbell River on Vancouver Island. I was young and green and worked on call in the mill in various jobs doing various things. Finally I landed in the 'ground wood' which is were wood was ground (ergo the name) into pulp. Logs were pre-cut into the appropriate lengths and came into the building floating on water and then were distributed onto long conveyor belts. The grinders were huge machines with the capability of grinding logs on both sides of an enormous stone that turned at an impossible speed.

The job was to fill a holding pen with logs, when the last bunch of logs were ground the floor of the pen would open and the new batch would drop down, the floor would close again and the pen would need to be filled again. Each guy had four machines, eight pens. The job was not easy, logs had to be pulled by hand off the conveyor belt and slide down into the pen and land just right. Done wrong the log would jam and it would be necessary to right it - a feat that took extraordinatry strength. So the eight hour shift would be spent using a pick-axe to pull logs into the bins and keep them full and running at peak efficiency for the whole shift.

On the wall, in plain view of each of us (and of course the supervisor) was a series of meters that read out the efficiency of each stone in each machine. A red line indicated an acceptable level of production. The goal was to keep the meter running at that level or higher for each stone for the whole shift. All of us kept an eye on those meters. All of us knew that there would be hell to pay if the stone wasn't running at exactly the right amount of efficiency. The needle would drop to below efficiency if the bin opened before you'd had a chance to fill it.

At first I had a sense that those meters were a malevolent presence, ready to report me and my failings at the earliest opportunity. But once I learned the mechanics of the job, how to pull with the pick axe, how full a bin should be, how to get the logs to land properly into the bin - I became rather enamoured of the read outs. I liked looking over and checking to see that I was performing as was expected, I was meeting the goal.

It was simple.

I knew when I was doing a good job.

Today I spent a lot of time working on writing up some of the work that I've done over the last couple of years developing a plan for agencies to offer abuse-free, safe environments. I've chuckled as I've written about some of my mistaken ideas and felt profoundly grateful at others as I've written about the input from all levels of staff within Vita. The discussions we've had, the ideas we've tried, the process of change ... all of it. In the pit of my stomach I feel that this may be the most important work I've done in my career. That this may be a contribution made, not by one person, but by and entire agency - with both will and vision.

But there were moments, even today, where I felt absolutely crushed by self doubt. Where I had to stop and breathe and get ahold of myself. Pages and pages have been written now, no one has yet seen them, but they are piling up. I re-read them. Too often. I can quote some of the paragraphs in my sleep. But I don't know ... does it matter, will it matter?

Somehow I wish that there were a meter I could look over at - check out to see if I'm doing it right, getting it done properly, meeting the target. But there's not. Simply not.

But I am determined not to let fear of inadequacy, fear of failure, fear of foolishness become a disabling condition. Because as I sit here working, my wheelchair isn't the issue, my will is.

And I know that's off the charts.

Thursday, January 24, 2008


I have known for several days now about the conviction of the final of the three who beat Brent Martin to death. The seventeen year old boxing student who, unlike the other two (16 and 21) did not plead guilty because he wasn't "going down for a muppet". There is a life sentence for a conviction of murder.

The whole time that the 'black armband' campaign was going on the trial was happening. Every time I thought of the monstors that had brutally beat a man with a disability to death, I got chills. The idea of them frightened me. My own vulnerablity as a person with a disability frightened me. A culture that breeds such violence frightened me. And without question, I wanted a guilty verdict. I wanted a jury to state, without equivocation, that the murder of a person with a disability mattered.

Well they did.

But I'm left with a hollow feeling. I'm glad that there was a just result from the justice system, I'm glad the crime was followed by punishment. I'm glad that Brent's name came to represent for us the very real concern about hate crimes against those with disabilities. But still, I felt somehow unfinished.

Like there has been conviction and punishment without explanation. I read the news reports and saw that this 17 year old claimed just to 'go along' so he'd 'look tough' so he'd 'look like a man'. That is a facile explanation. I know it. His lawyer knew it. But it had to be tried.

I don't understand the deep seated fear of disability and of disabled persons.

I don't understand the source of the prejudice.

I don't understand the need to diminish a whole class of persons.

I don't understand how a society can be built on the exclusion of some and the welcoming of others. Here in Ontario we are closing the last of the institutions that were built to house people with intellectual disabilities - people convicted and jailed for the crime of difference. The ripping of son's and daughters from parental homes. The ripping of citizens from their proper place in the community. The ripping of neighbours from neighbourhoods, employees from employment, worshipers from congregations. A mammoth act of social violence. An act never really explained - an act blamed on the disability not on the prejudice it spawns.

I don't understand how a whole class of people can be deemed 'fit for unemployment,' deemed 'receivers of charity and pity,' deemed 'not wanted on the voyage'. I don't know why 'diversity' never means disability - it means sexual orientation, it means race, it means gender, but it doesn't mean disability. I don't know why one group of people can be singled out for poverty and unemployment without a mammoth social cry of 'DISCRIMINATION'.

I don't understand why the terms of prejudice 'disphobia' and 'disableism' are never used in public discourse, in the press, in everyday speech. I don't know why racism, sexism and homophobia are considered social ills - but prejudice against disability is seemed as 'natural and OK ... worse it's even seen as frigging kindness!'

I can't imagine the purposeful killing of a black 23 year old by three white kids not being called racist.

I can't imagine the purposeful killing of a gay 23 year old by three straight kids not being called homophobic.

I have come to expect the killing of a 23 year old with a disability not even to be noticed. Not commented on as a display of disphobia. Not leading to a serious questioning of the place in the world, the experience of the world, by those with disabilities.

Every day, out there in the world, I experience some kind of reaction to my disability. Every day, out there in the world, I experience some form of social violence because of my disability. I fear I grow used to it, begin to expect it, decide I deserve it.

I fear that I will not be taken seriously, my concerns be tut tutted away, that there will never be a concerted effort to understand how deep the roots of disphobia run, how widespread the prejudice and how much society loses by diminishing the talents of 'we' with disabilities.

But there was a conviction for a crime.

It's not enough.

Not near enough.

Wednesday, January 23, 2008

Odious Pee

I thought she said, "Odious Pee."

I really did.

So I said back, "Pardon me?"

It was during an appointment with a specialist that my doctor wanted me to see. I'm always wary of meeting new doctors because, well, they're doctors. This one was so young - you know you are getting really old when specialists look like they are still wearing a training bra. She came out and called me in, introduced herself and then sat down to ask a whack of questions. I whipped through the answers - letting her into my medical history. Surprising her with having parents still living, surpising her even more with quick, brief, accurate answers to her questions. Then she mentioned the 'odious pee'. I knew I was mishearing her so I asked her what she had said. She looked concerned as this was the first question in at least 50 where I had faltered.

"Odious Pee," she repeated.

"I'm not sure what that is or what you are saying," I said again.

"You know the Ontario Disability Support Programme," she said and I then recognized that she was saying initials.

"I don't get the ODSP," I said.

She looked suprised and said, "What do you do for money?"

"I work," I said.

"Really?" she said, shocked.

"Really," I said angry.

"What do you do?"

"Huh," she said when I described my work.

We continued with questions, I was burning inside. I know that poverty and unemployment define the lives of so many with disabilities. I know that equity is a long way off. I know that many people struggle to have their abilities acknowledge with pay and respect. I know that. But part of the reason there is rampant unemployement is the mamoth failure of imagination of so many people. They can't 'imagine' a person in a wheelchair at work. They can't imagine a person in a wheelchair making a contribution. It's that intellectual blindness that is so frigging upsetting. The automatic assumption that someone with a disability is unemployable.

A few minutes later she put her pen down. Looked away from the computer for a second and said, "I've offended you haven't I?"

"Yes," I said simply.

"I'm sorry, I shouldn't have assumed," she said.

"No," I said, "you shouldn't have."

"I apologize," she said.

"The only apology worth anything is change," I said.

"I'll remember this," she said.

We went on.

She turned out to be very good at her job. She knew what she was talking about and gave me five bits of advice about preventative healthcare for someone with diabetes that I didn't know. She was entirely respectful in her work with me and she trusted me to know what I needed and to be able to make mature decisions about things. Overall I was impressed. And, I thought she really did get that her assumption, her stereotypeing, was inappropriate and wrong.

That morning, before going to the doctors, I'd been in a meeting with 'The Team' at Vita. We have a representative from the Rights Group on the team and he's a very cool guy with an intellectual disability. Several weeks before he had popped into my office and we chatted a bit. I asked him how he got to the office, did he walk? did he take transit?

"No," he said, "I drove."

I admit it. That option hadn't popped into mind. I didn't see him as a 'driver' and I didn't see that he'd be behind a wheel. A mammoth failure of imagination.




They're hard to avoid doing to others.

And wrong when done to you.

I hereby publically apologize to him.

But the only apology worth anything is change ... so I'm going to try.

Canadian Blog Awards - Round Two

Gentle Readers:

A number of you must have voted for me during the first round for a Canadian Blog Award as Chewing the Fat has made it into the final five in two categories - Best Activist Blog and Best Blogosphere Citizen. As of today the second round of voting begins. Oddly I had never heard of the Canadian Blog Awards until a couple of months ago, and now - admittedly, I'd like to win (I blush at admitting that). So I ask you, if you've got the time could you vote again please .... all you need to go is go here ...

... and click on the vote button. I really appreciate your time in doing this. Thanks,

I'd also like to note that Belinda Burston who has posted here on Chewing the Fat has been nominated to the final in the religious blog category ... you can check out her blog at

please go ahead and check out her blog and vote for her too if you'd like.


Tuesday, January 22, 2008

Switching Victims

The reaction to yesterdays post took me a little by surprise. While some 'got' exactly what I meant, others danced around my contention that the old woman had done an act of social violence. The idea that she was 'nice' and I was being a 'jerk' was prominant (particularly in the emails to my home address - I do wish people would leave comments in the comment section) in a few. The idea that she was elderly and 'meant well' were in another substantial bunch. In all, I think that I was being asked to kind of 'get over it'. Or at least I was being asked to 'put it in context'.


So, I was troubled.

When the answer isn't within, go to someone you trust from without. I called my friend Ian. I haven't spoken to him for a very long while so it was nice to chat. Our friendship is used to long pauses and then intense moments of discussion and closeness. It works for us. Let me tell you how I know Ian. He used to work a bar that I used to drink at. He is a big man, a black man, a smart man. Once we got past the bar chat stuff we got to speaking about real stuff. We talked about racism, about homophobia, about the deepness of cultural prejudice.

One day I got an idea, I asked Ian if I could talk to him about the prevailing philosophies of service to people with disabilities. He asked if there was a way he could 'read up' on it first so that he'd have some idea what I was talking about. I gave him the book 'Normalization' and set a date for a real talk about it all. When we got back together he threw the book on the table and said, "Now there's a book that only a white man could have written." What we talked about then would take far too much time to write here ... but one of the bits of advice he gave me was to 'switch minorities' .... if I wanted to understand if something was inherently disphobic I had to just switch minorities. Put someone of a different minority into place of the person with the disability and see if you would do the same thing or think the same way.

This has been helpful advice. And it's advice he gave to me again yesterday. He got me to imagine the scene differently. It helped me, so let me do it for you (Thanks Again Ian).

Let's look at the post yesterday. If it had been written by a black man about an incident at the grocery store. He had been standing waiting for his wife to pick him up. An elderly woman approaches him and in a little kiddy tone of voice said "Have you been left here all alone?" and tries to pat him on the arm. He reacts negatively to her tone of voice and her assumption that he isn't an adult but a mere boy that needs someone to care for him.

Would people tell him that it may have been racism, but it was kindly racism? Would people suggest that he, as a black man, needs to get over it a bit? Would people suggest that her age allows her to be a bit racist because that's what the world was like? Would people even think that 'a little bit racist' was possible?

Maybe they would, you tell me, but I don't think so.

Part of the trouble is, in trying to express things from the point of view of disability is that negative attitudes towards disability are often shrouded in 'kindness' and 'pity' and 'compassion' and there is still an attitude that disabled people should be grateful for the crumbs which fall from the table.

For me, it's taken two years of being victim of 'the voice' to really start to have it bother me. I can't imagine what it's like to be a victim of racism for an entire life. Because two years of this is wearning on the soul.

So why is prejudice against disability expected to be borne, with a cheery countenance by the disabled while prejudice against others - sexism, racism and homophobia - are met with social disapproval?

Maybe because we ... us ... disabled people ... our opinions are yet to matter. Other people, who know better, think they can define our experiences for us. Tell us that we got it wrong that ...


Monday, January 21, 2008

Words. Tone. Death

"Have you been left all alone?" Her tone was suitable for a dog who's been tethered up outside a store, a dog looking eagerly at the door for the return of its master. Her tone was suitable for a small baby, sitting in the childseat of a grocery cart as its mother is picking up milk a few feet away. Her tone was entirely unsuitable for my situation. Waiting for the car to be pulled around before pushing out into the wind, the cold and the ice.

She was old enough to be my grandmother, and I'm 55. She reached out to pat my shoulder but I automatically pulled away so she stopped and smiled at me as if I was errant in my behaviour. As the car pulled into view and I pushed out, I forgot her. Didn't even tell Joe about her, so common is the experience of being spoken to as something less than adult, something more than a fern, that I brush it away. A little social violence. I brush it away.

At home I took a tour of a few disability sites as something was tickling the back of my brain. A thought that occurred, unbidden and unwanted, in my head. A thought appearing of its own volition. A thought I don't want to acknowledge. "Stop talking to me like I'm Retarded."

Forgive me, please. I hate that word. I don't use that word. I've written letters to complain about the use of that word in print, in television, in film. I use the word here because, first, it's what I thought - second, it's the only one that works to express what I want to say here. It's 6:30, my blog is usually published long before now, but I'm struggling to say what I want to say. So please ... let me try. And if I fail, I want to be valiant in my attempt.

A common theme throughout many of the sites I went to, those that published lists of 'how to be with / interact with / talk with someone with a disability" was exactly what I had thought. "Don't treat me, speak to me, approach me as if I was R*******". All blogs are innocently making a point, a firm point, but a point. Or maybe the point isn't that innocent.

But to me, yesterday, on getting home and thinking about the elderly woman with the voice that strangled self esteem, I came to realize that there is something bigger here. Why aren't these blogs, why aren't I, asking a much different question. Let me explain ...

Trust me on this ...

There is a voice that says ...

You are less than me.

You are less than most.

You are an object of pity.

You are an object of scorn.

You are an object of low worth.

You are blessed to hear my voice.

You are blessed by my compassion.

You are enriched by my attention.

You have nothing.

You want less.

You'll be satisfied by a drop of social honey.

You need my charity.

You want my compassion.

You deserve niether.

There are words that mean ...

I am grateful not to be you.

I am thankful that you are not mine.

I am able to give, you can only recieve.

I am worth much, you little.

I am a source of pride, you shame.

I am gladdened by you to be me.

I am speaking to you to be seen.

There is a voice that means ...

You are nothing, really, nothing.

No one wants to hear that voice. Website after website rails against the tone that dismisses and denies. Don't talk to me like I'm R*******!


Really, UM.

Why should they hear it?

Why isn't the voice, the tone, those words that slap - why isn't it questioned by all?

Why do these websites, written by those with disabilities, why did I - automatically assume that there is a group of people that that tone IS appropriate for? A group of people who welcome pity the way hookers welcome what wives spurn.

Why aren't we saying ...

"Don't speak to me as if I'm less."

"Don't pat me on the head with your words."

"Don't slap me about with your tone."

"Don't hurl kindness at me from the height of your superiority."

Why are we suggesting that these verbal evil-doers treat me with respect and cart their unwanted sloppy kisses over to those who truely deserve it, want it, need it ... you know the R*******. Why are we wanting to separate ourselves, as people with physical disabilities from those with intellectual disabilities? What is there in our insecurity as people that we kind of don't want them on the disability boat? What is there in our own manner that makes us givers of offence rather than as recievers?

Enough, again I say, ENOUGH.

That tone of voice leads directly to social death and social isolation. It leads to the destruction of self esteem and the creation of inferiority. It leads to youth kissing fists and then beating to death someone less, much less ...

That old lady thought she was being nice.

She wasn't.

She was being hateful.

And so are you.

Whenever you use that voice.

The voice that begins with assault and ends with murder.

The voice that none should hear.

Sunday, January 20, 2008

Going Up? Not Today

I am afraid of heights.

Seriously afraid.

So last Tuesday on discovering that the elevator at work had broken down, I had to face going down the stairs under my own steam. I asked one of my co-workers to go and get Joe, who was waiting in the car for me to emerge from the building. He came in and up and together we slowly made it down the stairs. I held on to his shoulder (thank heavens I met someone with broad shoulders) with one hand, grasped the hand rail with the other and slowly took a step down. My disability leaves me with very little feeling in my feet. It's very easy to go off balance and very easy to fall. The long stairway, the feeling of vertigo combined with a lost of equillibrium, made the climb down no less an accomplishment than climbing up Everest.

On Wednesday I had to work from home because the elevator had yet to be fixed and while climbing down was difficult, climbing up is impossible. Now, I like an unexpected day at home as much as the next person. I loved 'snow days' as a kid and I love them even more as an adult. But part of the love of 'snow day' is that there is a universal 'we're all in this together' feeling that comes with them.

'Elevator Day' didn't have the same feeling. At all. I was home. Everyone else was at work. I needed the elevator. They could use the stairs. I had a disability. They didn't. Normally it doesn't matter, but Wednesday it did. And the day didn't feel like a 'SURPRISE' you get to work at home - it felt like isolation. It felt like 'difference'.

At least it did until about 9:15, when my cell phone rang. My cell will ring here at home, but there isn't a strong enough signal to actually have a conversation. We could see the number that called, could see that it was someone from Vita. I called the office and Anita was able to tell me that Jon had called, she put me through. A few mintues later, after discussing what needed to be done with his powerpoint presentation, Jon sent me the data he'd been working on. Now I'm pouring through numbers and checking out his figures. A few phone calls later and that was all put to rest.

Then Rose and I had to talk about the outgoing email to all staff. There were issues with formatting and issues with presentation of the material. Rose had suggestions, I had comments. It took a little while but it got done. Then in my email box was a request from Manuela for something she wanted me to write and a few seconds later we were on the phone going over a request and figuring out how I could contribute to what was needed.

Banging on the computer here doing what I would do there. Talking to people here as if they were there, the sense of isolation managed to ease itself. Somehow I knew that people were being purposeful in keeping me in the loop and up to speed with what was going on in the office and my contribution was still sought, even though I wasn't there. I even got copied in on the emails about the elevator repair and what was going on with that.

Though no one said a word, all day, about the elevator, about my working at home because I couldn't climb stairs - there seemed to be a diligence in ensuring that 'disabled' didn't mean 'disconnected' - and while I don't feel grateful for the consideration, I'm certainly thankful.

Saturday, January 19, 2008

The Last Day

At about 4 o'clock yesterday, in the car, I took off the black armband. The week of telling people about Brent Martin was now over for me. I had just finished doing a day long lecture in Barrie and had been gratified that of the 60 who attended 10 ro 12 were wearing black armbands. Some had obviously picked an idea up from Belinda's guest blog this week and were wearing black scrunchies, but what mattered was that they were there and they were wearing the armband.

Though I told the whole audience about the black armband and about Brent's horrific death, I spoke to a few personally. People who cared and people who wanted to make a difference. People who were thinking about what was next for them, how they could personally make a difference in the lives of those they cared for. So it was with a sense of a little sadness that I took the armband off. I knew that, like those I spoke to, I would be thinking about what more can be done and, though it was little, was glad that I had done at least some little thing in protest of violence against people with disabilities.

Joe turned the car automatically towards home. I asked if we could break the routine and go up to the mall and have a tea at Teopia, a favourite place of mine - a place I don't get to often enough. Joe simply nodded and headed up towards the mall. Normally I help Joe by pushing myself as he is pushing me, I try to take some of the weight off, but Joe said, "Just relax, I'll get you there," and pushed me along.

At Teopia I noticed they had a type of White Tea that I've never tried before so I ordered that and Joe got a 'kick ass' black tea. We sat at a table in the mall and watched people flow by. She came at me from behind so I was quite startled, when a voice said, "Are you Dave Hingsburger?" I said that I was and she took a chair opposite us.

She was wearing a black armband.

I wished I hadn't taken mine off.

She told me that she worked in a group home nearby and was on her way to work - she'd stopped into the mall to pick up something for one of the residents. She didn't have long because she didn't want to keep them waiting but she did want to say that she'd had a powerful week because of the black armband. She told me that the first day she wore it at the group home, those who lived there asked her about it.

She told them.

Then they told her.

About what it was like for them. The stares. The taunts. The everyday social brutality that they experience. A door was opened and they walked through it. For a week they've been talking about Brent, about themselves. "They've always known," she said, "that what was happening to them is wrong. But this is the first time they knew that someone cared about it." She brushed a tear away, "They know it matters to me now."

She ended by saying that her relationship to those she care for is forever altered, forever deepened. She thanked me again for starting the campaign.

When I got back in the car I put the black armband on. The day wasn't over.

Friday, January 18, 2008

The One O'Clock Rollover

The one o'clock rollover determines the fate of the evening's sleep. It has for years now. When I fall asleep, I always fall asleep lying on my left side. At around one every night - that's every night - I come to a little bit and roll over onto the other side. On the roll over a memory pops into my mind. The other night, it was a memory of a betrayal by a really close freind. And that was it. The end of sleep. Usually, though, my mind is more positive and picks something nice, a warm memory to send me back to sleep.

Last night, the one o'clock rollover over was accompanied by a beautiful memory. This surprised me because I spent yesterday telling a lot of people about Brent Martin and the image of his last moments were burned deep into my mind with each telling. But Brent wasn't there, this morning at one.

Instead ...

Many years ago I worked at an agency where a youngish single woman had put in to adopt a child with Down Syndrome. She specifically, only, wanted a child who had been cast away because of her disability. She felt that she had something to contribute to a child with a disability. And indeed she did. I have met many people who work in the field of intellectual disability who are good at what they do - she went a little further than good. Her caring came out in her voice. The kind of caring that doesn't patronize, it was the kind of caring that wrapped hurt in a warm blanket and gave it tea.

She told me that she had got the call and was going to be a mother with awe in her voice and barely concealed glee. She arranged to take time off work and was heading to the hospital that very afternoon to meet her daughter. The social worker kept wanting to tell her stories about the parents, she refused to listen to the negativity, 'This is a day of 'hello', she's already had her day of 'goodbye,' she said to me.

I went to visit a few days later when she was at home with her little girl. Oh my, she was small. I don't think I'd ever seen a newborne before and didn't realize that they were so tiny. So fragile. She gave me the baby to hold and I did. I wondered if that tiny creature could feel my heard beating wildly as I held her. The enormity of holding life in my arms was huge, the automatice sense of wanting to protect and keep safe took me over. I was terrified that I wouldn't be up to the trust - I gave her back.

And then the baby roused a little bit. Mom leaned down and kissed each eye. "You have the most beautiful eyes in the world, don't let anyone ever tell you different," she said. Then she smoothed out these tiny perfect hands and kissed each one saying, "People will tell you that these hand won't be able to do much, don't listen to them you have perfect little hands." I got tears in my eyes and tried to discreetly wipe them away.

After baby was back in bed we had tea and she told me that she has decided that since her little girl is going to get a lot of negative messages about who she is and what she looks like, she will be full of positive messages first. So full that there will be no room for hopelessness, despair or self hatred.

I don't know where she is now, either mother or child. But I imagine them doing well.

And I thank them for a wonderful nights sleep.

And for waking - smiling.

With hope restored.

Thursday, January 17, 2008

What Next

Lucy came into my office and after a spell asked me about the black armband. I told her the story but our conversation veered off in an interesting direction. Lucy said that stories like Brent's are one of the reasons that parents can be very unwilling to give their child with a disability opportuntities to grow into community experience. That some parents will respond with horror to what happened to Brent and will use protection as a strategy to keep their children safe.

As we talked I told Lucy that my feeling was that parents get frustrated when we as professionals come with 'happy happy' faces to talk about their child moving into a 'welcoming welcoming' community. It's like we refuse to see the evil side of the community - they refuse to see the good. And we are at impasse. I have to admit, I get the parents frustrations, I've gone to conference after conference on 'community' and the stories are all 'warm fuzzy' ones. I listen with a cynical ear - disbelieving much of what I hear. You see, I'm fat. That difference alone has made the community a very 'unpleasant' experience much of the time. I'm in a wheelchair now, the community has within it, I discover, very bold bigots who don't bother restricting their glare or muting their discomfort at my presence.

While I enjoy the fruits of the community, I am aware of the thorns. I think that the murder of Brent Martin is a wake up call for all of us. I keep picturing him trying to shake his murders hands, offering to buy them a beer, telling them he loved them. Why was he doing this? Two reasons, deep deep fear and lack of strategies, not knowing what to do. Years ago I did a workshop on teasing and bullying for school kids living in the Newmarket area. These were all kids mainstreamed into the local school system.

We did a role play of a kid walking down a hallway while others called out names. You gotta bet that these kids have experienced this a thousand times. So when the role play was over I asked, "What should she do next." 40 teens. Not one answer. They had no idea. None. Clearly no one had sat down with them, kids everyone knows are going to be picked on, and talked to them about the social realities of difference and of meanness. No one had given them a way to understand teasing and bullying and strategies to deal with it. Not one. Well, they did have one, it came a bit later in the class when a little boy shouted, "I remember what you are supposed to do, you are supposed to just ignore it."

Ignore it.

Yeah, that works.

If you've been reading the blog this week and wondering, but what do we do. Now that we are aware, what do we do. Well, if you are a parent or you work with either children or adults with disabilities, here is what I'd suggest.

1) Talk to those in your care. Open the lines of communication. Ask about bullies. Ask about teasing. Remember, children often don't tell their parents and care providers because they don't want to upset you, or they've told you in the past without getting much in the way of help. They've given up.

2) Insist, insist, that your child, the person in your care, take part in an anti-bullying anti-teasing programme. They exist. I teach an anti-bullying progamme and an anti-abuse programme. I know they work. I've heard back from both care providers and those with disabilities. If you don't know where to start with an anti bullying programme -get the book I wrote about it - the aRe word. If you don't know where to start with and anti abuse programe - get the book I wrote about it - Just Say Know. I tossed and turned last night about whether I should mention these books, would people see it as shameless self promotion. But that's not why I'm mentioning the books. And if others know of other resourses list them here in the comment section.

3) Talk to the police. You will find them more approachable then you've ever imagined. Ask if they will come and talk to a group of people with disabilities about street saftey. Let the police meet people with disabilities, let people with disabilities meet the police. Some wonderful community initiatives have happened. People First in Dorset, England, have come up with a brilliant community safety programme. You may want to contact them, or other groups who have looked at community safety head on.

4) Don't let outrage die. My black armband will come off on Saturday. But my outrage lives on. I'm going to try to notice and try to be aware of this kind of brutality and will try to say something each time. Even it is just to my team at Vita. It doesn't matter how big or how small, but we should be moved. I don't know if in Canada we have hate crime legislation that covers disability, if not, I'd like to work towards that.

Well, there are a few ideas. I welcome others. Someone wrote an idea that I liked. They suggested building a webpage memorial where those with disabilities who are beaten, brutalized or murdered could be mentioned. Where we could gather to leave messages to family and at the same time document the enormity of the programme. I don't know how to do that. I don't know how to create a web page. But if someone else does, I'll volunteer to help in any way I can.

You see, it's just that when this campaign is over, I want to know what I can do next. I've got some ideas, hopefully, now - so do you.

Wednesday, January 16, 2008

A Sign of Hope

(Gentle Readers: For only the second time in this blog's history, someone else is writing today's post. This was written by my friend Belinda Burston who has joined in on the Black Armband campaign. Thanks to Belinda for this ...)

A Sign of Hope

I’ve been wearing a black armband in solidarity with others mourning the death of Brent Martin for three days.

But I confess that when I first read the story of Brent’s death, I felt a little like the man who called Dave on his cell phone yesterday; overwhelmed by the enormity of the world’s sorrow and wondering how protesting one death could make a difference.

That was before I read Dave’s post, Brent a Brother, about the middle aged black lady, who’d said that she wanted a world, “Where you don’t hurt a brother.” Her words made me feel ashamed of my helpless attitude and I was in.

The next morning, Sunday, I wore my armband to church. I taught a Sunday School class of 16 children aged 6-10 years old, including 4 of my grandchildren, that God created everyone equal and precious for who they are, regardless of difference.

When I veered from the curriculum and told them why I was wearing a black arm band, I saw eyes light up with interest and curiosity. They responded with open hearts.

“How did they do it?” one boy wanted to know. I exhaled slowly at a question I’d hoped they wouldn’t ask, but they deserved an honest answer.

“With their fists.” I said. The kid’s faces were sober. Then they began to talk about taunts they’d experienced for small differences; this was something they could relate to and it mattered to them. Spontaneously they volunteered ideas of what they could do. One girl said her aunt could write about it in the paper. I asked them several times if they remembered his name and their voices chanted, “Brent.”

I told them it was important to remember.

Frances, my friend, came into the class and her face screwed up in concern at the sight of the arm band. When she read the article I’d brought with me she gasped in horror and disappeared, returning soon afterwards with a fuzzy black hair scrunchy on her arm. “How could I not?” she asked.

The next day I went to the office wearing my arm band on a white blouse. Was it Canadian politeness or did they think it was a new fashion accessory? We were all busy, and no one asked…

Today I did an interview and had a meeting…no one asked…I wanted someone to ask.

But tonight, a gathering of friends at our house for dinner and finally someone asked, “What’s with the arm band?” and I handed them the article with the story and told them.

With us at the table were two of the grandchildren who’d been in the class on Sunday. I asked them if they remembered his name.

Tiffany-Amber’s gentle eyes squinted as she tried to remember. “I wrote it down,” she said, and I loved her for doing that.

And her younger sister Victoria called out, “I remember. His name was Brent.”

Tuesday, January 15, 2008

The Phone Call

I think he was angry because I haven't given up hope. But that's only a guess. I wore my black ribbon today and, stupidly, it was hard for people to notice because I'd worn a very dark shirt. I had to point it out to people and then ask them to ask me. It was a tad weird but I was going to talk about Brent Martin on my first day wearing the armband. What wasn't weird was the response I got. As soon as I began describing Brent's murder and the point of the black armband people got very quiet, very serious and asked questions that indicated that they very much got the point of the protest. It's heartening to know that there is caring in a world where such violence can occur.

Thus, I was feeling good about the day. Doubly good because I'd been contacted by a reporter from the Sunderland Echo who is interested in doing a story on the protest. He indicated that he knew Brent's mother and would let her know about what we are doing this week. Emails have poured in to my hotmail address from people who are joining in and people who are saying thanks for bringing this story to a broader audience - to a community of those who care. I should be wary of feeling good because that just means that an axe is waiting to fall.

On the way home from work, while in the car, I got a phone call from someone who I've chosen not to name here. But this is someone here in Ontario who is fairly well known for their work in the field of disability. I don't know him well but we've met on occasion and I've always felt that he saw me as either 'frivolous' or a 'wing nut'. That's OK, I'm an adult, I don't need everyone to love me anymore.

His phone call was to express concern about the black ribbon campaign and to ask if I'd even thought about what I was doing or was I 'just acting on impulse'. I told him that of course I'd thought about it, but that I was also acting on impulse. I had been angered by the story and my first impulse was to shout 'ENOUGH' as loudly as I could. My blog seemed to be the place to do this and therefore, I did.

He said that, this is a quote, 'campaigns like this are meaningless, they get everyone stirred up for a few days and nothing changes' ... I told him that I didn't agree. Brent's story has changed something in me. It's changed something in others. Isn't that where real change begins? Personal awareness. Making a pledge to oneself that one will no longer simply sit and mutter ... that one will now stand and shout. He actually 'tut tutted' me. Tut Tut. Really.

"How many others has this happened to, how many tragedies, why should this one be different?" he asked. Again I told him that because we'd gotten into the habit of silence when one of our own is murdered, brutally murdered isn't a reason to continue with silence. Every minority community has had to break silence.

It's time for us.

To break silence.

I asked him to think about the fact that there were people, maybe not many, but people in Holland, England, Ireland, Canada, the United States, Austrailia, New Zealand that were wearing black armbands in memory of a man with a disability. In memory of someone lost. Isn't that at least a hint of who we are as a community? Isn't that a beginning of a vision of who we could become as a community.

He Tut Tutted again. And I got mad.

I told him that I had not given up hope. I will not give up hope. I will stay the course. I will fight the battles as they come and trust my impulses when they seem to be right.



Though he seems comfortable in the quiet.

I will be silent no longer.

And then, I hung up.

Canadian Blog Awards

Gentle Readers, Chewing the Fat has been nominated in three categories for a Canadian Blog Award. If you feel you'd like to, you can vote for this blog by going to this website

it's a little confusing to figure out how to vote. You will find a list of categories for nomination on the right side of the screen. Ignore these. Instead in the first section of the blog where the voting is announced go to where you click on voting for the "following categories" that click will take you to the list of categories where you can vote.

Chewing the Fat is nominated for Best Blog, Best Activist Blog and Best Blogosphere Citizen. Some regular Chewing the Fat readers are also nominated. Shannon Buck is nominated for best personal blog ... her blog is halfsoledboots. Belinda Burston is nominated for best religious blog ... her blog is whateverhesays. Elizabeth McClung is nominated for Best Blog and Best LGBT blog ... her blog is Screw Bronze.

For those of you who take the time to vote, thanks. For those of you who don't get the point of these kind of awards, don't worry about it.

PS If you've been nominated and I haven't listed you here. Please feel free to tell us so we can vote for you ... just leave a comment.

Monday, January 14, 2008

An Email From The Boss

So today the black armband begins for me. I'm not dressed yet (it's 5 AM) but I've got it around my arm anyways. I've spent some time thinking about what I want to say, now I get to go out in the world and say it. On Friday I'll take off the armband.

So that means it's over?

After the second post about Brent I received an email from Manuela, the Executive Director of Vita Community Living Services otherwise known as 'the boss'. She wrote that she'd had a sleepless night thinking about what had happened to Brent, Manuela firmly embraced the idea of the weeks memorial but, as ED's do, was thinking about it in a 'big picture' kind of way. "What can we at Vita do to keep momentum going, keep the discussion happening, be purposeful in our awareness of violence against people with disabilities?" she pondered.

Vita has been working for two years now on a project to examine services to people with disabilities, to ask hard questions about safety, to ensure that people with disabilties are safe in care. Those two years have sensitized all of us who work there to the issue of abuse, to the need for safe harbour for people with disabilities. This black ribbon campaign just seemed to be an extension of what we were already doing.

Manuela mentioned, in her email to me, the 'yellow ribbon' campaign by People First here in Ontario (it may have been more broadly based) which was aimed at the closure of institutions and the welcoming of people to the community - home. I too remembered the campaign. I remembered having the yellow ribbon pinned on my shirt by a woman with Down Syndrome just before I gave a keynotes speech. I remember brushing tears away as she spoke to me about life in the institution and the need for freedom.

So Vita is proposing to work with our member self advocates and begin a ribbon campaign against violence against people with disabilities. We could attach the ribbon to little cards which explained the purpose of the ribbon - as a discussion starter, an awareness raiser and a memorial to those, like Brent Martin, who are murdered because of disability.

I like the idea of raising awareness.

But what I like even more is that already people are talking about the issue in ways they didn't before Brent's story became more public. I like that people are thinking deeply, like Manuela has, about what we can do, how we can make a difference. I like Belinda's comment yesterday telling us all about what happened when she wore her black ribbon to church. I like knowing that there are people around the world, not many perhaps, who will be wearing a black ribbon today and this week.

Brent died asking for affection and care.

It may have come late, but it's come.

Sunday, January 13, 2008

Left v Right

"A camel is a horse designed by a committee."

I've always foung that quote very funny, perhaps because I've sat in so many committees and discussed so much minutia as if it was important. Don't get me wrong, I think collaboration is wonderful and two minds definately are better than one, but somehow those concepts go out the window as soon as a committee is established. Even so, after all these years of sitting in those meetings, my mind has become organized into a little committee of it's own.

This came clear to me yesterday morning as I was working on what my mind now calls the 'Black Armband Action'. I was thinking about todays blog, the one I was writing now, and what kind of information people who are joining in might find helpful. So I looked up on the computer, "What arm do you wear a black armband on?" I swear to the heavens that this is true. And when I got the answer 'left side' I was almost (weirdly) jubulent. I had something of import to say. Then, because it would make everything more interesting, I set out to find out why you wear a black armband on the left side. What a fine bit that would make for a blog.

Well, to my utter disappointment, no one knows - the guess is that people wear it on the left side because most are right handed and it is easier to tie it on the left side. "AH HA," I think, desperate to make this relevant. "Maybe we should all wear it on the right side, denoting that we all need help to get by." I actually blushed with pride at that little idea and imagined writing a blog with that as the message.

Then, this morning, I googled Brent Martin's name again. This time I found the testimony of a youngster who had witnessed Brent's horrific beating death. The details are too disturbing to even print here. After finishing the article I sat there staring at the computer screen. I realized how the committee in my mind had done what committee's often do, it had lost sight of the purpose and got caught up in details.

I don't care if people wear it on the left or the right. I doesn't matter. What does matter is that people wear one. It doesn't matter if people wear it for a week, like I have decided to, or a day. All that matters is that people wear it, just for a time, and tell everyone that asks about Brent Martin. About the devaluing of the lives of people with disabilities. About the shameful lack of media attention focused on crimes against those with disabilities. About the lack of recognition of people with disabilities as victims of hate. About how we've had enough, that we will act as a community that loves each other, that mourns together. That a crime against one, is a crime against all.

Beside me in the trash bin are all my notes, the ones I made yesterday as I searched 'black ribbon' on the computer. There are only two rules ...

Wear it where you want.

Say what you need to say.

And we'll do fine.

Saturday, January 12, 2008

Brent, a brother ...

We are standing in a fabric section of a huge department store looking at huge bolts of fabric. We must have looked lost and confused. I had called a funeral home and asked where one buys black armbands. The woman I spoke to had no idea! Really! She suggested going to a fabric store, so we did. A middle aged black woman comes towards us and asks if we need help. I tell her that we are looking for black fabric, jet black. She casts an eye over the bolts of multicoloured material and said, "Jet black?" I nodded.

She told me that she didn't think that they had any plain black material. She had the demeanor of a talker so I wasn't surprised when she asked, "Why do you want black material?" I told her that we wanted to make two black armbands. Her hand shot out to me and touched me on the arm, "I'm so sorry." With her compassion was just a blink away. I told her that the black arm band was in both protest and memory. That wasn't enough.

So I told her.

About Brent Martin.

I knew more from searching on the web. I found one story about the beating of Brent Martin, about how he was picked out because he had an intellectual disability. That story reported that during the entire time he was beaten by the three boys, he never struck out. It reported, from testimony, that he kept trying to take their hands and shake them, in sign of friendship. He kept telling them that he loved them. He didn't beg for his life, he begged for affection, for friendship. And still they kept coming, this beating wasn't over in seconds, it took time, it travelled some distance. They had time to stop, to change their minds, but they didn't they kept coming. All because he was different. All because he had a disability. All because they hated him.

Her eyes grew hard. She asked some questions and I saw her flick a tear away from her eye. I explained that a few of us, quite a few I gather from reading your comments to this blog, were going to wear black armbands next week, in protest of his killing, in protest of violence against disability, in protest against the silence that greets the killing of our own, in protest of the commonality of Brent's experience. But mostly so that Brent doesn't die forgotten.

"Let me get a pen, don't go anywhere," she said and disappeared. When she came back she wrote down the name Brent Martin, she wrote down the address of this blog, then she said, "Come with me."

She walked quickly, anger pounding her steps to the floor. We were now in the men's department and she found a black tee shirt with a design on the front. She held it up and looked at me. "Just a minute, stay there," she said, quite comfortable with ordering me around, she had to have kids, I thought.

She came back with a receipt in her hand and handed it to me. "Come with me," she said and took us back to the fabric part of the shop. Deftly she cut three long black strips out of the back of the tee shirt. She handed one to Joe and one to me. "This is from me," she said, "wear it next week and tell everybody what you told me. I'm going to wear mine. One thing I learned from living this life is that we are all brothers. You don't hurt a brother." She's got tears in her eyes and she waves us away.

I try to say, "Thanks."

But she doesn't want thanks.

She wants a world, the same world that I do, "Where, 'you don't hurt a brother.'"

Friday, January 11, 2008

Black Armband

Brent Martin.

Do you know the name?

I didn't. And that fact makes me mad. Really mad. Let me tell you what I now know about Brent Martin. He was a gentle man with an intellectual disability, not long past his 23rd birthday. He was out in the community, perhaps on his way home, perhaps on his way out, I don't know, all I know is that he was causing no one no harm. He was noticed ... no strike that ... his disability was noticed by three other young men, 21, 17 and 16. The 17 year old bet the 16 year old 5 pounds that he couldn't take Brent down with a single punch. Seems the boy gang had been taking boxing lessons, and suddenly there was a chance for target practice.

The autopsy showed that Brent didn't fight back, that he was brutally beaten and then left to die, half naked, on the side of the road. Struck 18 times in the head, there was little left for his body to do but shut down and die.

Two of the his attackers, 21 and 16, have admitted to the attack. One is fighting it in the courts, even as we speak, and is quoted as saying something like, "I'm not going down for a muppet."

Brent Martin is dead.

Because he had an intellectual disability.

And I didn't know. Never heard a report, never had it come up in conversation at work, never had any idea. I found out because I write for OUCH the Britsh disability site and they had a small notice where I was able to click to get the larger story. And there it was.

Do you remember when Matthew Shephard was killed by a couple of guys in Wyoming, beaten and left to die in the middle of the prairie? I do. I remember the protest from the gay community, I remember the protest of all right thinking people. I remember the anger about how someone so young could be killed in such a cruel manner, just because he was gay, he was different. That protest spoke loudly. It said, 'We value our own, we will face you down."

Was there a single protest of disabled people outside the courtroom where they discuss Brent Martin's murder? His beating death. His slaughter. I don't know, maybe there was. Well I am going to protest. I am going to talk to people about Brent Martin.

So next week, all week, I'm going to wear a black armband. I want a week of people asking me what I'm in mourning for. And I'm going to tell them.

I'm going to tell them about Brent Martin.

I'm going to tell them that I oppose violence against people with disabilities.

I'm going to tell them that the disability communty mourns its own.

I'm going to tell them that disphobia (prejuducie against disability) is as unacceptable as racism, sexism and homophobia.

It's only one week.

It's only one arm band.

But I feel I must do something.

If you want to join me for next week, let me know. If you have other ideas for how we can protest let me know.

No more silence.

No more letting them think that we don't care when one of our own is beaten to death and left to die on the side of the street.

We couldn't be with Brent Martin as he lay they dying, but we can be with him now.

Please join.


Brent Martin is dead.

Thursday, January 10, 2008

But It's Mine

Everything was fine yesterday at 5 when I was up and on the computer. I had written my blog and then had begun to work on a project for Vita. Everything was not fine a few hours later when Joe came into the office while I was writing. Joe knows not to talk to me when I'm writing but he broke into 'the zone' and said, "The basement is flooded."

I made a couple of phone calls to insurance and to contractors and then went back to work in the office. Joe was busy downstairs trying to get stuff out of the water, saving some things and being ruthless with others. Some boxes down there moved with us ten years ago and are still unopened. Those, after a quick glance, were simply thrown out.

In one of those boxes, Joe found a wack of stuff from our university days. He found the leather pouch where he'd kept our passports, international student IDs and international drivers licences - all stuff from our trip to Europe back when we were students. Along side those were our student cards from UVic where we attended in the very early seventies. Those pictures of a much younger me, a me with hair on my head and muttonchops on my face, stared out at me.

Joe noticed me looking at the pictures and said, "Remember the carefree days?"

Now, at that moment, he was rushing around in a basement full of water so didn't understand what he was saying. I looked at that guy, "Carefree" is not how I'd have described him then, and certainly not how I'd describe him now.

Suddenly I remembered one of the classes that I had taken at the University. It was one of those 'touchy feely,' active listening, discover yourself, faux psychology courses that was all the rage at the time. We'd go to class and have to do relaxation and visualization exercises - discover ourselves (or the self the professor wanted us to discover because we were marked on this shit). In one of those exercises we had to imagine putting all our worries into a big bag and leaving them at the door.

I dutifully did what was asked. My worries were huge. If being gay at a time when that was exceedingly not cool, wasn't enough - being a Christian at the same time and knowing the condemnation I'd experience should my friends ever find out, certainly was. Hiding our relationship was something Joe and I got very, very good at. So along with all the other youthful insecurities and fears, my bag was pretty damn full. I pictured it straining to contain all fears within.

Then we were supposed to go on some kind of guided imagery journey. But I couldn't go. I couldn't take my eyes of the sack holding my troubles and woes. Suddenly I could see a hallway full of bags of worries, all left by other students. Some huge, some small, some misshappen, some tidily packed. There mine lay amongst them. All I could think of was that I wanted this damn guided journey to end (I've never much liked EITHER meadows or beaches) so I could get my bag back.

Those worries, concerns, fears, they defined me in some odd way. They were what drove me during the day and woke me during the night. I didn't want to lose them. I didn't want someone else to grab my bag by mistake. I wanted them back.

This is what I wrote about for the professor. I got an 'F' for missing the point of the exercise. I gave the professor an 'F' for missing the point of the exercise.

So I looked at that guy in the picture yesterday. I know he never imagined being 55, and he certainly never imagined being me. He was just trying to get through the day. Making tomorrow, without dropping his bag of worries and woe, was his goal then.

Oddly, it's still mine now.

Wednesday, January 09, 2008

I'm Still Here

Toes, there, present and accounted for.

Fingers, all ten, alert and working.

I checked around and I'm all here, I'm all OK. I went to work yesterday. Took Cousin Christine for a tour of Toronto and gossiped for 8 straight hours. Ate, talked, laughed, the whole thing. Nothing extraordinary.

Got home and found that my lecture tour to the interior of British Columbia has grown, by one, to just over a full week. Plans are underway and I'm looking forward to the trip. Nothing extraordinary. Things proceed apace.

So why am I telling you this?

Joe got an email two days ago telling him that the writer had heard that my health was failing and that they wanted to offer him support and me care. They then went on to describe how my work and affected them personally and their agency collectively. As emails go, it was a nice one. Except for the idea that I'm about to fall off my perch.

Since I've been in the wheelchair, these rumours come and go at increasing frequency. In fact, though I have had a couple of very severe illnesses, those are in the 'long past' now and my health is indeed quite good. A week before Joe got the email, we ran into someone in Toronto who said, "Oh, my God, I thought you were dead! They went on and on about how good it was to see me and how much my work had blah blah blah."

Joe noted, wryly, as we walked away, "Then why didn't they come to the funeral?"

I am alive and well and living in Baxter, Ontario.

I only emphasize this because those rumours always make people wary of hiring me to do lectures, travel and consult. Not only do I love this kind of work, it allows me to fulfill my need as a closet preacher - rabblerouse, get people fired up again. So, I assure you (which keeping a daily blog should have anyways) that I am quite well thank you.

Oscar Wilde said, "The only thing worse than being talked about is not being talked about."

For the most part I think that true, rumours of death and decline, though - that I could do without.

Tuesday, January 08, 2008


I had made the decision about noon. I pulled up my blog on my work computer and read all the comments from the post Vulnerability, especially those ones which recommended that I talk to the police, report what had happened. That idea had been bouncing around in my head since the incident happened. What kept me from doing it immediately was simple, fear (first) stole my ability to process and think beyond the moment, relief (second) flooded my senses when it was over and all I wanted to do was get home and get under a blanket. But a few days later, some wise advice later, I thought about going to speak to the police.

"But," I wondered, "is what he did to me serious enough to bother the police? Will they see me as a silly, overgrown child tattling on someone for 'not being nice to me'?"

Whatever the worries, I decided to go to the police.

I've never done this before. I once had to call them when my car was broken into, several years ago - they didn't even come to look, just took the report over the phone. I have done training for police officers on issues of disabilities, speaking once at an international conference of sexual assault investigators to over 500 police officers. That was a trip. But I've never gone to the station with a complaint.

Until yesterday, after work.

We arrived at the police station and as we were headed in, I found my heart was in my throat. I was nervous. Really really nervous. I was afraid of being looked at with pity, or with contempt (why contempt entered my head I don't know), or with a patronizing smile. But, they are there to serve and protect me, so I wanted to give them a chance.

It didn't start well. I was asked at the desk 'how I could be helped' and I blathered on about what had happened and why I was there and how I just thought they should know. I shoulda made the decision in the morning, maybe I'd have planned this out better. The police guy (I couldn't tell a rank for the life of me) told me to wait for a minute.

A while later a woman came out to greet me, she brought me into a little room and asked me to tell her exactly what happened. That I could do. That I did. She made notes as I talked. She asked me a couple of questions, could I describe him (I so wanted her to say perp but she didn't) and I told her that I could. I described his height and weight, hair colour and style, jacket, sweater, jeans, sneakers, wristwatch - I'm a writer, I'm a watcher, I notice. She smiled a couple of times as I described him and at the end she said that I'd make a very good witness.

As we talked, I relaxed and oddly, I felt control coming back. I didn't really expect anything much to happen with this, but I still felt that I had taken action. She told me that she appreciated me coming by, that it was important that they know that there was someone out there with extremely hostile attitudes towards a specific group of people. That they'd be on alert should anything happen.


She said that she was sorry that that had happened to me. That everyone should feel safe in the community, that it wasn't ok for him to have behaved like that. She told me that she took what I said seriously and that it mattered that I had come in.

I was moved.

I don't know who trained her, or if she just came that way, but she was very good at being reassuring and very good at communicating strength along with compassion.

Thankyou blog kin for spurring me on to do what I did yesterday.

It needed to be done.

With your help, I did it.

Monday, January 07, 2008

The Professor

We bought a Christmas Card from a shop over in England that I thought was extremely funny. It has a picture of a little boy playing with alphabet blocks. There are a great stack of them around him .. the caption reads (no kidding) "Dave wonders if he has enough blocks to spell out 'This Christmas present is shite.'" Both Joe and I howled when we read the caption and put the card in a stack of other outrageous, and some obscene, Christmas cards.

I get what the kid is thinking. Joe, wonderful man that he is, isn't the shopper in the family. I'm the gifter. I listen to what people say, know their likes and dislikes, hear subtle hints, and then can spend enjoyable hours finding something I think they will like. Joe doesn't do that. After well over thirty years of buying presents he comes to me each year with a pen and pad and says, "So what am I buying you this year." It's his way of saying, "The only way you are going to get it, you are going to have to order it." And I give him the list.

But I also hint, broadly hint, I really wanted the DVD box set of Deadwood, just the first one to see if we liked it. When I openned my presents this year I got a DVD box set of a television western I'd never heard of, Into the West, I think. I looked at Joe blankly and said, "Deadwood?" He told me he didn't get Deadwood because I wanted it and he thought he'd suprise me with something else. Well, he did. I've learned to smile through these little moments.

But he did get me something on my list. I wanted a Nintendo DS. Throughout our trip in England they'd been advertised on television in commercials that were aimed at adults my age. They showed Jean-Luc Picard (otherwise known as Patrick Stewart) playing a vocabulary game - for one. The idea of having one of this crept up on me because I do like games but video games elude me because I don't really like killing. I find blood, um, icky.

So I've been playing 'My Word Coach' quite a lot. These are games masquarading as education and 'mind building' - but essentially they are games. I've gotten up to a new level where they've given a new game where blocks drop down a grid and players have to pick out a set of words from the letters before the letters reach the top. On easy level, it was easy. It's now gone to medium level and I am having a tough go, last try I got 4 (of twenty) AND a time penalty. This is the worst I've ever done. Up until now I've breezed through the games.

I waited in anticipation for my Word Coach. You have a choice of coaches, I've kept the bald, cartoon professor guy, as the other choices seemed to young. What would he say, my coach. He's there to give instruction and occasional bits of praise. He's been endlessly positive with me, my little computer friend. But now 4 - WITH a time penalty. What would he say, well when he came onscreen to comment on my performance he said, "All you need is a bit more practice." He didn't yell, roll his eyes, or any of those things.

Ah, I think, he's programmed to be positive.

Ah, I think, he's programmed to be patient.

Ah, I think, he's programmed to be endlessly optimistic about the skills of others.

I've been feeling the back of my head, where's the slot for that chip? It'd make life a whole lot brighter - for all those around me.

Sunday, January 06, 2008

Where For Art Thou ...

On good days I have trouble sleeping well. When something troubles me, it's almost impossible. Yesterday, after experiencing a real social shock and real personal eye opener, I was up long before dawn. Joe woke up as well and we joked at by nine o'clock we'd already put in a 5 hour day. We puttered around and then it came time to leave. We'd bought tickets to go see Romeo and Juliet 'Live from the Met' which was playing at our local movie theatre. If we weren't meeting a friend there, I think we would have just stayed home. Time was making gravity 'sticky' and it seemed harder to get up, get dressed, get out, than it normally does. But we were determined to go.

We were in the theatre, which was packed much to our surprise, just before one. The lights dimmed, the music started. I had forgotten much of the detail of the play ... I remembered the end of course (given away by the fact that this was a tragedy) but the journey to the end took some twists and turns that I hadn't expected. The music was lovely, the performances wonderful and it was impossible not to be swept up into the experience. Near the beginning, the screen went black even though the music continued. Clearly there was a technical problem, the staff at the theatre worked feverishly. I know this because from my seat in my wheelchair I could see right up and into the projection booth. Feverish was the word. It was going again in less than five minutes.

As we had gone to the bathroom we missed the announcement at intermission that we would all be given tickets to another event in the theatre as apology for the technical blunder. I thought this very generous because by intermission, I'd already forgotten those few minutes of black screen.

True to their word when the 'event' was over two theatre staff stood handing out coupons. Because of the crush of the crowd, we just waited till near the end. They had brought in a table to sell snacks and it created a very narrow passageway for the wheelchair, we wanted it to be as free of others as possible. When we got there there was a very elderly woman gingerly making her way down the stairs. She indicated for us to go ahead, I got my event ticket, but the other three didn't as they were out of coupons. The woman asked us to wait just outside the theatre for her to return with more tickets. Joe, Susan and I glanced at the elderly woman and it was clear that standing for any length of time was out of the question. We suggested we all slowly walk towards the lobby and catch the woman on the way back.

We got to the spot just before the stairs, ahead of us, ramp beside us. There was no sign of the woman with our coupons. I could see panic on the elderly woman's face. She could not stand for a long time. She looked over to a small bench that was filled with two loutish teenage girls. They noticed her make a move to sit there and spread themselves out further. Nice. Who parents these children? Are they proud? But I saw a solution immediately.

The elderly woman looked back at us from the bench and I said, "Listen, they gave me a ticket, why don't you take mine. I'm waiting here with my friends, I 'll just get another ticket." At first she protested but only slightly, she saw the logic of the solution. As she came by me she patted my shoulder, gentle, and softly said, "People like you and me, we've got to watch out for each other, don't we?"

"We do," I said, quite moved my her touch and the words she spoke.

And she was gone. It was good too because it took at least ten more minutes for the coupon thing to be sorted out and for us to get ours as well.

Gentle moments are like bromo for the soul.

Plop plop fizz fizz

Saturday, January 05, 2008


I had asked Joe to pull up, very near the door. The parking lot was fully of snow and slush and I wanted to get into the store with my wheels as dry as possible. First, it makes for easier pushing, second, it makes for easier pushing. Joe left plenty of space in front of the car for people to get in an out of the store so I didn't think it was an issue. Once I was in the store, I pushed myself around while Joe went then and parked in the disabled bay.

On the way out of the store, we reversed the procedure. I waited just inside the door and when Joe pulled up, I pushed out. Again, there was plenty of room in front of the car for people to have easy access to the store. I was waiting beside the car as Joe opened the hatch and was rounding the back of the car to help me get out of my chair and get the chair loaded into the back.

A man, who I had noticed glance at me on his way in, came out of the store and stood, his hands on his hips staring at us. His face was angry. I didn't say anything to him, I've learned not to initiate converstations with people with that kind of face on.

"You people think you can get away with anything," he starts up.

I'm now in the car but the door is open, "What?"

"Just because you have a disability you feel you can take all sorts of liberties. Pulling up here, blocking the entrance, making it difficult for everyone else, just because you are in a wheelchair."

Where the hell is this all coming from? We aren't blocking the door. I don't want to talk to this guy. I hear Joe rushing to get the chair in the back of the car. The guy advances towards me and I become afraid, he's young, he looks strong, and for some reason he's very very angry. I don't want to get in a verbal sparring match with him. I know I could win it. But he looks very, very strong and he looks like he wants to hurt me.

"I'm sorry, it's just that it's winter and my chair gets all mucked up."

"Why is that anyone's problem but your own, this isn't a drop off area, they've already given you," here he makes quotation marks with his fingers, "special parking but that isn't enough for you is it?"

I want to say that the "special parking" in this case is still a fair bit away, down a slope that's covered with snow and ice. I don't. I decide just to apologize. "You're right, I'm sorry, we shouldn't have pulled up here. We won't do it again."

His knuckles are white, but he backs off and heads back to the store, "Fucking cripples" he says glancing back at me for the last time.

Joe gets into the car, I close my door. We drive away in silence. We don't say a word to each other. Suddenly I find that I'm crying. I don't know what else to do. I had been so incredibly frightened. I can't believe that I just backed down like that. I thought he was going to attack me. It all took only seconds but it felt like time had slowed and a long time had passed.

"Thankyou for not getting into a fight with him," Joe says, his voice shaking. I could tell he had been traumatized too, "I don't think I could have protected you from him."

We had both felt vulnerable to his anger, his youth and his strength.

I have paused several times, even in writing this, I don't understand that kind of hatred. I don't understand what makes people like that. I don't understand why he needed to do what he did. But I do understand, deeply and for the first time, my own vulnerablity to another's hatred. And the realization churns in my stomach.

And I'm crying again.

Friday, January 04, 2008

Will I Ever Get It?

I was an absolute jerk yesterday.

Here's what happened.

We were over looking at the space for the Vita staff retreat and the meeting took a little longer than I expected. I had a meeting back at the office that I really had to be on time for. Now, let me tell you what that means, I really had to be on time because I have to be on time. I hate being late. Hate it. When it happens I get all agitated and upset with myself. I'm OK with others being late, don't mind it a bit. But this is a standard I've set for myself and I like to keep it. So, I'm rushing back for the meeting and I'm cutting it fine.

I get dropped off right at the door and rush in praying that the elevator (the slowest on earth) will be there wating for me on the ground floor. It isn't, it's on the second floor. I push the button, it lights up acknowledging that it's coming. But it takes longer than ever, I understand why. When it arrives after several long plump minutes make their way like sweat down my back - it is full. A staff and three members. Two of which were carrying large, heavy looking boxes. They were having trouble getting organized in the little space to get out of the elevator and through the door.

"Come on, come on, come on, come on," I think, but do not say.

The last person off is another fellow with a disability who is so bundled up I do not recognize him with the touque pulled down and his scarf wrapped firmly around his face, he was all eyes. They lit up at seeing me, he immediately pulled down the sleeve of his jacket and was attempting to get me to look at something. (You're in my way, you're in my way, you're in my way," I think but do not say.) Suddenly the door is closing right behind him, I NEED to be on that elevator so I push around him to get to the door and stop it from closing. I slide into the elevator and see that he has turned and still has his arm up.

Anyone else, not rushing, not having a mind filled with impatience, would have noticed that he was trying to show his new watch. I'm on the elevator now, the door is closing, he eyes are beaming into mine. "I get it," I say excitedly, "You've got a new watch for Christmas, it's nice." Just before the doors closed, I saw the hurt in his eyes, they said, "But you didn't even see it," even though he didn't.

I brushed it away, I HAD A MEETING. I got to my office to discover that no one was there yet, a call on my answering machine said that the meeting needed to be delayed for 15 minutes. I sat there.

On time.

No awards for punctuality.

I knew he'd be gone now. I knew the moment was over. I felt horrible. I closed my eyes only to see his as they looked at me with such disappointment. He was asking for a few seconds, that's all. He wanted to show me something important. Worse, he knew that I had blown him off with cheap meaningless praise. Worse still, I had shown myself untrustworthy.

I can tell myself that I'll do better next time.

I've said that before.

And been wrong.