Saturday, May 31, 2008


I hate being an adult.

It's easy for me to pinpoint the exact moment that I grew up. I was driving my car and remembering an incident from the past, an incident that I liked to think about when considering how unfair the world was to lil'ol me. And for the first time I realized that I was responsible for what I got, that I had been a turd, a great big turd, and others reacted in just they way they should have. I almost swerved off the road. The revelation that I was not always perfect, not always the victim in the story, not always innocent of the crimes I commit ... was harrowing.

That's why I wanted everyone else to shut up.

Just shut up about the kid who got voted out of the classroom. The kid who was shunned by 14 of his classmates when put to trial by a teacher trained under supervision of Adolph. Everyone waxed poetic about the behaviour of this teacher - the damage to the self esteem of that kid - the failure of mainstream education. And they should. These are all huge issues. Issues I'd like to write about. But can't.

Because I don't know if I would have been one of the 14 or one of the 2 who voted for him. God knows I experienced bullying at school, shunned for a thousand reasons by my classmates, made to feel isolated and alone. I can IDENTIFY with the kid. That should guarentee that I would have stood with him, by him, for him. But it doesn't and I know it doesn't.

There was a moment in my high school career, a brief moment, when someone was lower on the social ladder than me. There was a moment, a tiny moment, when I had to decide to be kind or be cruel. I knew, achingly, what it was like to be her, to live on the outside of acceptance - but I longed to have a moment on the other side of the fence. I had a decision to make. I made the wrong decision. I hurt her. Socially stoned her. I have never forgotten that moment, she looked at the others with hurt, at me with betrayal. She knew I knew. I knew, I knew. This is one of the most painful memories of my growing years.

And it's a memory that makes me question myself. But none of the commentators seem to have any question about themselves. The 'experts' on television condemn what happened, they with perfect skin and straight teeth, with an air of superiority that's a little frightening. The two women I heard talking about the vote in the line in Wegman's today on the way home, they were horrified - just after purposely avoiding a woman who tried to catch their eye - a woman less pretty, less thin, less ... you know. Even the disabled guy I talked to in Nashville at the conference seemed to suffer no self doubt as he talked about what should be done to the teacher - with no thought about who raised the 14 others.

I hurt for that kid, but I'm afraid, if I'd been there - that the vote wouldn't have been different. That I wouldn't have had the courage to stand with "the other" against a tide of bigotry. I don't know what I would have done if it were me, then. And it shatters me.

Tobesure I know what I would do now, but that's cheating - we all know the right answer now.

But, then ...

The fat, stupid kid that I was would have been surprised at the 'two votes' after years of empty valentines boxes, after years of hearing about birthday parties on the Monday after, after years of being unable to produce even invisible friends. Two votes would have shocked that kid. Two votes. Two whole votes. Two kids with minds of their own. Two kids with the courage to stand against 14 others. Two kids with the fortitude to look the teacher in the eye and vote her wrong. Two kids ... two little kids ... 2.

Truthfully, they surprise me now.

Don't tell me that you would have been one of the two votes, unless, UNLESS, you are willing to turn around and show me wings.

Because now, at 55, I firmly believe in angels.

That would be 2.

2 Angels.

Friday, May 30, 2008

A Question

What would you have seen?

We were having breakfast yesterday morning. I was a bit distracted because I was preparing myself for a specialized tailored version of one of my lectures that I would be giving in less than an hour. I like it when an agency asks me to adapt a talk specifically to their needs but it's also jarring to the system. I have to follow a new path, zig where I used to zag, so I was running over the flow of the stories and the pacing of the information in my mind.

After placing the order Joe and I were chatting about setting up the book stall, organizing ourselves for our differing tasks for the day. All the while I was glancing around the restaurant. My eyes fell on him for a few seconds. He was dressed neatly perhaps even a bit primly. His hair was parted in a razor sharp line. He ate with delicate bites and had the impeccable manners of a gentleman from the South. He spoke gently with the waitress and he too, glanced around the room. He caught my eye and smiled before looking away. He was alone at the table so, with the exception of an occasional request from the waitress and an answer to the 'how's your meal?' question, he was silent. There were others with disabilities, such as myself, in the restaurant but he was the only one with Down Syndrome, and maybe the only person there with an intellectual disability.

So, a man with Down Syndrome sitting at a table alone in a room full of tables occupied with duos and trios.

What would you have seen?

When I noticed him my first thought was, 'Wonderful.' It was gratifying to me to see a man with a developmental disability completely on his own, having breakfast without the interferece or accompaniment of staff. A man, independant. An adult, self composed. This is the kind of thing that can really deeply move me. Evidence that we've come far.

Joe caught me looking at him and said, "Yeah, it's sad isn't it?"

His comment took me aback and I said simply, "Sad?"

Joe then told me what he saw. Another lonely guy with a disability. Isolation and loneliness are epidemic amongst adults with disabilities and here we saw evidence of that right in front of us. At a conference, not even a conference, a megaconference with 800 people, here was a guy with Down Syndrome sitting all alone. Joe pointed out to me that ironically (or coincidentally, I don't really know the difference) I was giving a talk that morning about the desperate need for us to be teaching relationship skills to people with disabilities.

I looked back that that guy having breakfast alone. I had the sensation that I got when looking at that painting where one way it's an elderly woman, the other way it's a young girl. Which way is right? I could see what Joe saw. I could still see what I first saw.

What would you have seen?

Thursday, May 29, 2008

A Lingo Worthy of the Task

Two men in suits, looking aghast at the crowd assembing before them, says one to the other, "What on earth is going on?" This moment will happen often over the next couple of days here in Nashville at Tennessee's Megaconference on disability. I like those moments. I like the idea that the sheer coincidence of two business type guys ending up in a hotel hosting a conference where the subject is disabilities and those with disabilities are in attendance brings together unlikely people. I do. No PSA or Education Campaign will ever take the place of just one experience of riding the elevator with someone you thought different.

This is a conference I'm not well known at. I can ride through in my chair in anonymity - without being recognized. Many assume I'm a self advocate attendee not an invited speaker. But that's OK too, you can learn something from rolling a mile in anothers shoes (shut up, let it work). What struck me this time was overheard conversations and the realization that came from that. We have a jargon. Words tumbled out of mouths, words like ...


and then there are the self's

self direction
self determination
self worth
self esteem
self advocacy

I know all these words. I know the context they are used in. But for the first time I realized how we've managed, over the years, to get rid of jargon and concentrate on what we understand. The Self Advocate Movement has pushed for plain lanaguage, and from what I heard here yesterday, they've got it. I heard none of the jargon of the past ... didn't hear DRO or even DRI, does anyone even remember 'response cost'. Those were the days where technicians determined day to day life and defined the issues of the conference. But those were the days when people with disabilities didn't attended the conferences about them. Hell, we didn't let parents attend.

I rolled through a community with it's own language, it's own way of seeing the world. We use a language of inclusivity and gentleness. Now when our walk matches our talk, we're going to have it made in the shade.

By the by, I saw one of those business guys later, standing in line at the desk and chatting, showing only slight discomfort, with a guy in a wheelchair. They were laughing. What's the world we'd use for that ... inclusion ... well I think the word better suited is ... action.

Wednesday, May 28, 2008


In times when businesses seem to want to have a 'cookie cutter' approach to service, a McWay of doing things, it's nice to experience how one person can humanize an entire corporation. We stayed in Dayton, Ohio last night on our way down to Nashville. We were both tired from the drive and seeing the familiar 'Fairfield Inn' sign actually gave us a warm feeling. We like the Marriott chain and stay whenever we can.

Many have complained about how these chains homogenize the experience of travel. Well, yeah, that's why I like them. Getting up at night and knowing which way to go to find the bathroom is increasingly important to me as I get older. The similarity in room layout, in the location of amenities, are things I like. They save me stubbed toes and icky accidents. Sue me.

What makes any place unique, of course, is the people who work there. No training can create a uniform personality - thank heavens. When we checked into the hotel, we were stuck between front door and middle door in a little anteroom. There were no buttons to push to have the doors magically open and we were struggling a little bit. A guy came in behind Joe and as Joe was reaching around to get the next door open he said, "I work here, would you like me to help with getting you both in?"

We said 'yes' and he helped us get in.

Both of us. Not me, the guy in the chair. Both of us, that was nice.

Then upon check in, before I even confirmed the fact that it was a wheelchair room, which I always do because though we often request it, have it guarenteed, it is often not provided, the fellow - now behind the desk - says, "I see we have you in one of our accessible rooms, I hope it has everything you need."

Once in the room for 15 minutes he called, like all hotels call these days, to ask how we like the room. Then, "if you have any suggestions as to how the room could be further adapted for the needs of customers with disabilities, please let us know."

Um, OK.

This guy, to me, is the best of what you get when you combine good training with the right attitude. He wasn't obsequious in his caring, he just seemed to be genuinely interested in getting it right. He wasn't cloying in his offers of concern, he presented himself as being willing to listen and learn. He wasn't patronizing or pitying in his tone, he spoke with simply friendliness.

I felt that I was special to him because I was a customer, not because I was a customer with a disability. This is remarkable because our interactions were about disability.

He raised the bar for me, I know have experienced the best in service.

And proved it possible.

Tuesday, May 27, 2008


I sat at this same spot yesterday and just couldn't even type a word. The combination of a poor sleep, low blood sugar and a three hour time zone change had me operating just slightly above concious for pretty much the whole day. I was able to call work, make a whack of phone calls for work, and I was really good at sitting and staring.

Last evening Joe wanted to watch a DVD of a WW2 documentary and I agreed but I saw little, instead just drifting in and out of sleep while armies did battle and commentors made comment. Joe managed to just let me be though I could feel his eyes wander over to me to see if I was catching 'the good parts'.

This morning is a wee bit better, I slept well and I'm now ready for the next trip. We're heading to Nashville for the Megaconference there. I've not been to Nashville for a very long time and amd looking forward to being back.

The last time we were there we made our way downtown to what used to be the Grand Ol Opry and took a tour of the building. We were there with a family who had a boy with cerebral palsy that they carried through the building. When we were on the stage he busted into some country song and everyone stopped. His voice carried right to the back of the hall, his phrasing could have been a lot better but he got the tune right.

Everyone stopped and listened to him sing. The tour guide, annoyed, was trying to get us all to move along, but an elderly woman who I don't think was part of the boys family, took hold to the guides arm and said, "Stop, that's someone's dream we're hearing." The guard fought back a remark but stopped. For a few minutes we just listened to him sing.

Both parents had wet faces as he finished, so did most of the rest of us. Not the kid though. He grinned huge.

I'm hoping that I remember that kid when I begin my lecture there, and I want someone listening to realize that, deep inbedded in my lectures, it's my dream they're hearing.

An Invite

Neice Shannon has written a post today on her blog 'Half Soled Boots' that I think many readers here will enjoy, so if you've the time and inclination drop by and have a read. I really enjoyed it. Shannon commented yesterday that as I missed a day on my blog that she may have been channelling me. Drop in and say Hi from us here at Chewing the Fat.

Sunday, May 25, 2008


We pulled the car into the driveway of the Marriott in Victoria's Inner Harbour and got out. Joe assembled the wheelchair and arranged for the valet guy to bring our luggage up to the room and then I went in to check in. We have this down to an art now. When checking in I'm asked for information about the car, beside make I put 'white, pretty' ... this isn't good enough for the clerk. Joe comes over and tells her more officially what the make is. I don't know cars.

The lobby is full of a tour group of American tourists. A number were waiting to go out on a tour and others were spilling out of the bar and heading, like us, for the elevator. Joe remembers something in the car and asks me to wait while he goes back to the car. I wait in the lobby listening to the buzz of conversation and watching the ebb and flo of the other guests. They look like they are having fun.

I notice a couple standing together with a small group. The woman is staring at me eyes watery from booze. I turn my chair a bit to try to break her gaze but her eyes won't leave me. Not until Joe comes back in from the car. As I push myself over to the elevator I soon find that she and her husband are beside us getting into the elevator car.

She is on one side of me, he the other, Joe is standing beside the buttons. I can smell beer and cigarettes and can feel her eyes burning a hole in the top of my head. Then she taps me on the shoulder and I look up at her.

She smiles.

A weak smile.

"At least you have a nice car," she says.

Her remark strikes me as funny. I must have been a bit tired from the lecturing. I must have been a bit of kilter in my head, because I just found that extremely funny. I started to laugh. Really laugh. Joe's laugh joins in. Suddenly the two of us are both almost crying we're laughing so hard.

She and her husband, both, take real offense to this. I hear her mutter something to him but couldn't for the life of me tell you what it was. The sound of our laughing drowned out anything they said.

At our floor Joe pulls me out as I'm helpless. I haven't laughed like this for a long time. It hurts. She glares at me and I simply wave at her.

In our room I look at myself in the mirror and say, "At least you have a nice car," and we're off again.

Saturday, May 24, 2008


I don't know why I thought about her, about them, this morning as we are up getting our things packed and ready to go on the flight. We chatted briefly in the restaurant over breakfast on our first morning in New Westminster. The wait staff were poorly organized and over time we all began looking at other tables both to check and see if they'd been served and to catch the eyes of other diners to give them, "Can you believe this?" looks. The girl who's eyes met mine was also in a wheelchair. That was no great surprise because most of the breakfasters in the restaurant were in wheelchairs.

When we rolled in both Joe and I pulled up short at the sight. There must have been 10 or 12 other people in chairs. Joe was the only 'two footer' in our area. But then, I was the odd man out because I was the 'odd man' in a room full of women. After catching the young woman's eyes, exchanging the 'knowing' glance about service, I was emboldened. I asked her if they were all part of some kind of team. She told me that they were there for the wheelchair basketball championship. I asked how her team did, she gave a quick smile and said they'd come in last. We both laughed.

We saw them several times during the stay at the hotel. They were quick and agile in their chairs. They were quick and agile with their wit. They hung around the lobby, fussed around on the computer, gossiped in groups. They were teens. To be sure there were some non-disabled people around but they were very much in the background, easy to miss. What wasn't possible to miss was the sense of camaraderie and community that these girls had with each other. The easy sense of belonging they had.

A few days earlier we had breakfast with my brother Larry and his wife Doreen. As we chatted Doreen mentioned that her grandson (she is my brother's second wife, he her second husband) was deaf and had recently come back from a trip to Ontario where he played hockey with an all deaf team. It seems that he lives in a smallish northern city where there is nothing much in the way of a deaf community, in fact he had never learned to sign. The trip represented the first time he was ever around others who were deaf, the trip changed him. He went from being 'the kid who can't hear' to a 'member of the deaf community'. He is learning to sign with a ferocious desire to know his language and understand his culture. Doreen was telling the story to a rapt audience. I wanted to know everything I could find out about his trip and his reaction to it. It confirmed in me the idea of the importance of disability identity and disability community. Although I think Doreen left breakfast thinking I was just a bit weird.

One of the high points on this trip was having lunch with Elizabeth and Linda. I met Elizabeth through her blog 'Screw Bronze' and knew her through her book 'Zed'. I had looked forward to meeting them and was thrilled that we could work out a time that was good for all. When we got the information from Linda about where to meet there were none of the usual worries. "Is it accessible?" "Will there be disabled parking?" With Elizabeth also being a wheelchair user, it was a given that if she could get in, so could I.

We lunched on Mexican food and talked. Gay couple to gay couple, disabled to disabled, and it was nice. Nice not having to define terms, the need to explain oneself doesn't exisist in the face of commonality. Oh to be sure there is much to say and tons to share, but there's much that also can remain unsaid and understood. That's what I liked about the whole thing. We all get the basics and could move on from there. Joe and I were shocked to discover that we'd been at the restaurant talking and laughing for almost 3 hours. Where had the time gone.

I want to write more about meeting Linda and Elizabeth, but I'm going to have to do that when I've got more than a few minutes to write and a little more time to think. What I wanted to say here, with these three examples, is that I'm thrilled at the emergence of the disability community, the realization of the disability identity, it gives me more than you can imagine.

Like the moment, when Cory, a wheelchair user who attended my conference in Courtenay burst into a greal grin, a grin of understanding, at a story I was telling. I knew at that moment that he and I, the only two on wheels in the room, were the only ones who had just got what I had said. It was a moment of intimacy - and what made it good, was that it was shared.

Friday, May 23, 2008

8 feet

You can tell sometimes, can't you. Just because how someone carries themselves in the world. Or maybe is because of how the light in their eyes has been turned down. Or maybe it's because of the set of their shoulders. But you can tell. Those who have given into messages of worthlessness are legion. They can be young strapping men who look out at others and fail in comparison to what they see. They can be rich housewives who look out, like frightened dogs, at the mood of the master. They can be 8 year old girls who pick up a magazine to look at the pretty girl and suddenly begin the journey from self-dissatisfaction to self-loathing. But you can tell. Pride is not an etherical concept, it's a way of walking, a way of being, a knowledge of how to confront the world.

In New Westminster I was doing a presentation for self advocates on Abuse Prevention. They came in buzzing, loud, joyous people. I knew my job had just got easier. I have taught those who sit in every room like it was the day room on a ward - those who have given up on themselves. But this group, the energy came in with them. Well, except for her. She had Down Syndrome and she trod into the room and chose a seat at the back.

She looked up at me, appraisingly. Then she looked away. She put the Down Sydrome look on her face and sat back to endure the three hour class. I kept glancing back at her. The others were up and role playing and showing off, they were laughing and clapping for each other. All she did was blush when I asked her to come up. A shy refusal combined with a desperate wish to participate. I'd seen it before.

Then just as we were switching to the movie. One of the women said that she didn't want to miss the movie so could we take a short 'pee break'. I agreed. People poured out the room and equally quickly poured back. All were seated. But her seat at the back was empty. Someone explained that she had been at the back of the line for the bathroom.

"Would it be OK for us all to wait?" I asked. They agreed.

She came into the room and then noticed that it was quiet and others were watching her. "You haven't started?" she asked in an impossibly gentle voice.

"No, we decided we wanted to wait for you."

Everyone in the room knew, at that moment to be really quiet. In that quiet she though about what just happened. She looked over the group, not at me, "You waited ................ for me?" The words were shaky. When everyone nodded or said 'yes, of course'. She began to cry. She didn't cover her face she just looked at everyone smiling at her and let the tears fall. She made it back to her seat and I said to her, "Are you ready now?" She nodded.

We continued.

It was a tender moment. A nice moment. It meant so much to her. And it took, at most 5 minutes. This moment gave me such intense pleasure. The fact that I can make a moment like this happen, that I've been given the privelege of being able to make moments happen, is astonishing to me. I will carry her face around in my memory for a very long time.

When it's possible to choose to make a moment for another. To give someone the 'gift' of mattering' Why don't we do it. More often. For each other, for our families, for shopkeepers in 7/11 or Spar?

On her way out she stopped and waved to me. I'm not sure, but I think she was eight feel taller.

Thursday, May 22, 2008

Thread of Grace: Book Club

note to readers: I don't write book reviews. I'm not good at them. I like reading them. Niece Shannon write killer reviews and I'm in awe of her. But it's a skill I do not have. It was made more difficult by the fact that I am on the road, badly planning my trip, I'm writing a book review without the book to refer to ... I can't even name characters. YIKES!! I only offer this here because I so wanted us all to get together and read a book that has a disability theme ... and then there is 'the scene'. So here it is, my offering for Chewing the Fat's first book club:


We have watched hundreds of hours of documentaries about WWII.

We have read books set in the time.

We have gone to lectures on the subject of the Nazi Eugenics movement.

And in all that no one ever did what Mary Doria Russell did in "Thread of Grace".

Someone finally slapped a Nazi. Right across the face. For saying something ridiculously hateful. When a Nazi doctor told a mother of a little girl with Down Syndrome that it might just be better that her child was dead, mom hauls off and slaps him.

I was sitting at home reading the book in the early hours of the morning. I had left a warm bed and curled up under a blanket with a cuppa tea on the sofa. With just the reading light on, I was able to fully enter the story. And at that moment, I heard the slap. It reverberated in my heart. I began to cry.

It's a slap we've been waiting for, we the people who are disabled, we the people who love those with disabilities.

I can't be the only disabled person who's wanted to slap away attitudes of superiority.

I can't be the only disabled person who's wanted to knock away the hostile glances of others.

I can't be the only disabled person who's wanted to wallop someone who suggests my disability comes from my sinful nature.

I can't be the only disabled person who's wanted, really really wanted, to slap some sense into doctors, scientists, politicians, architects ...

So that slap sounded good to me.

I needed it.

I also needed to hear what others thought of that scene. Of that mother's love for her child. Of that mother's refusal to see her child as less than. Of Grandma's having to grudgingly admit that the child was more than expected. I wanted to know if other's responded like I did. Chewing the Fat seemed to be the place to do this. I loved that scene. I've waited for it. Did you feel that too?

There was so much more in Thread of Grace. So many characters with disabilities. These characters are so vivid that their disability just becomes part of who they are and how they live their lives. They climb mountains, deliver mail, plan insurrection, say mass ... they LIVE beyond their disability but also with their disability. Doria Russell does not use disability as a means of weakening a character, nor does she succumb to the temptation to make those with disabilities inspirational - she simply puts disabled people where they would be, in war and in history.

Even more, in all I had read about WW2, I had never been told the story of the Italian resistance and their steadfast refusal to buy into Hitler's race policies. I was inspired by a tale not often told - a tale that gives hope to the idea that we as humanity can rise above hatred and embrace each other. Ultimately Thread of Grace is a poem to the human spirit and our ability to care in the face of adversity.

I've read all of Doria Russell's books, including her new one Dreamers of the Day, and love them all. Sparrow, was my first experience of her writing and it blew me away. Dreamers of the Day brings us a character that is instantly likeable. Her ability to create people that you want to know is astonishing. But to me, Thread of Grace, is now at the top of my 'All Time Best Reads'.

What follows now is the letter Doria Russell wrote me. I don't know why it published early. I tried to schedule it to appear today but it went straight onto the blog. I thank her for her willingness to write something for Chewing the Fat.

To CTF Readers from Mary Doria Russell

For The Book Club: Thread of Grace

In my letter to Mary Doria Russell I wrote: The stand out scene in the book for me was between mother and doctor regarding Down Syndrome - never I have read a fictional account that was more accurate about parental love of their kids with DS. How did you come to write this ... why did you think it was important to be in the book? Mary answered with the following. Warning, when I copied this to paste here the formatting was lost. Any problems with the paragraph breaks are mine. Here's what Mary had to say:

I suppose you're expecting that maybe I have some direct personal connection with DS, but I'm afraid it's not that straightforward. See, I'm a biological anthropologist by training (Ph.D., University of Michigan), and even before writing A Thread of Grace, I was conscious of 19th century anthropology's role in spawning the eugenics movement. The logic of eugenics is easy to follow:

natural selection used to remove unfit individuals from the gene pool;
civilization and medicine short-circuits that natural process;
and sounfit individuals survive and reproduce;

and thereforeunfit individuals begin to make up a larger percentage of the gene pool. Obviously, the key word in that is "unfit." Now add 19th century social Darwinism, which proclaimed that white Anglo-Saxon males -- born in Britain, America or northern Europe -- were the pinnacle of human evolution. What you get is a toxic blend of self-satisfied beliefs about cultural entitlement and biological superiority, backed up by political power held only by WASP men who didn't let anybody else participate in politics. Anthropology was their science and it was used to promote and stabilize their grip on power and to justify taking over other people's continents.

The next step for eugenicists was, "Let's do nature's job, and remove the unfit from the gene pool." Unfit at that point included "idiots," drunks, the poor, the blind, the deaf, etc., all of whom were targeted for sterilization, to keep them out of the gene pool. Significantly, forced sterilization of the unfit was put into play in America and Britain decades before the Germans took it up. Fearing that the Brits and Yanks would breed better soldiers and place Germany at a military disadvantage, the Nazis developed their own eugenics program, starting with the elimination (aka murder) of mentally or physically disabled individuals in hospital populations and rapidly expanding to include whole populations of Jews, Gypsies and Slavs.

So in A Thread of Grace, I wanted to face up to the awful heritage of pseudo-science that tainted the beginnings of my own academic field. I wanted to show how easy it was for normal, non-psychotic, well-educated men to become part of the T4 program, and to keep on going, step by step, all the way to the place where they were sorting perfectly healthy people into two columns: one to die immediately and the other to be worked to death on short rations over a period of a few months.

That's why the Nazi doctor Werner Schramm is such a likeable character. He's funny and wry and pretty self-aware, but he's also a thorough-going mediocrity who only got a job in the T4 eugenics program because his father-in-law had contacts. And Schramm's got his own issues -- the hydrocephalic sister, the alcoholic father, the depressive mother. He becomes a doctor, and he wants to fix all this stuff. He truly does desire a better world, and he thinks the world would be better without hydrocephaly and drunkenness and suicidal parents. And really, what's wrong with wishing for a world that wouldn't include all that? None of those conditions is enviable.

That's the moral dilemma I wanted the reader to face. Once the reader gives Schramm the benefit of the doubt on that, where do we draw our own lines? I wanted each reader to understand just how easy it is to move from "I don't envy that life" to "nobody should have to live that way" to "hey, let's fix this once and for all."

While I was thinking about all this, getting ready to write that novel, I also started thinking about Down Syndrome. I was at a library one day and saw an absolutely enchanting little girl. This kid was just so cool, just such a honey, and I thought, Who wouldn't want a daughter like that? She was obviously being raised with full understanding of her differences but also with the conviction that she was valuable and interesting and beloved on her own terms, and her own terms included Down Syndrome.

In the late 20th century, people with DS are mainstreamed -- they're in regular classrooms; they're visible in jobs working with the general public, and in the years I was writing Thread, an actor with DS starred in a TV show. But at the very same time, just as the rest of us are finally giving folks with DS a chance to develop fully and live well on their own terms, there is an unorganized and non-programmatic eugenics movement that removes DS babies from the gene pool. All pregnant women over 35 are offered tests for "chromosomal abnormalities," and if Trisomy 21 shows up, abortion is available and often chosen.

Now, I am not an anti-abortion partisan, but I am an adoptive mother. Our son was born with a clubfoot, and in his natal culture that was considered an awful birth defect and a source of shame to his biological family. When the adoption agency asked if we would consider him, despite that handicap, our reaction was, "Are you kidding? Hell, we'd want him if he was missing the whole damned leg. Who gives a shit about a clubfoot?"

So I know with my own heart how ferociously and passionately a mother can love a child that someone else might think was defective or undesirable. All that emotion went into Mirella Soncini's furious defense of her daughter's existence, a defense that required Mirella -- in 1943 -- to buck her own doctor and her family and her neighbors and her community. "The world is filled with unreasonable hatred," Mirella snarls when she is urged to institutionalize her baby. "What is wrong with unreasonable love?" To me, the most important moment in that passage of the book is when Mirella tells Werner Schramm, "She wasn't a tragedy! She was a little girl. She was my daughter. And she loved to dance."

She loved to dance.

That takes the whole conversation beyond categories and policies and legalities and theories, and brings everything down to the concrete specificity of a little girl, Mirella's daughter, who loved to dance.

Wednesday, May 21, 2008


I knew from the outset that we'd be crowded in tightly. A 101 people in 101 chairs in a room that is designated to hold, at maximum, 100. Being the speaker, I always get the best seat with lots of room. Getting to a lecture hall early is part of my way of dealing with the nerves and anxiety which are naturally part of the 'speaking experience'. I got set up, my notes laid out, and then chatted with people as they came in. Though it looks like just a friendly exchange, the chit chat serves to 'humanize' the audience, another trick to ease into the transition from being a private person to a public speaker.

Typically the room fills from the back and here in New Westminster, it's no different. Then as we get closer to the start a woman comes in and sits almost directly in front of me in the first row. I smile at her and glance at her nametag to see where she is from. But her name catches me. Her first name is "Comfort" what an awesome name. I immediately think of those people I've met whose names match the profession, not the person. There's Dr. Dickie and Dr. Finger, both who work in sexuality. There's Dr. Payne, the dentist. Don't forget Dr. Money (who once bought a Mercedes convertable on his credit card).

But, I have to say, Comfort beats them all. I joked with her that her name is perfect for working in this field. She smiled but did not laugh. She said that it was hard to have to live up to her name, that there were days where she wanted to be anything but comforting - that on those days she had to conciously work to 'be' what her name called her to be.

We chatted occasionally through the day and I wondered if 'gentle' was her middle name. I called her up near the end and asked if I could write about her and her name in my blog today. She readily agreed.

So after the session Joe and I went to the market that's attached to the hotel. It's got small stalls where they sell trinkets and food and other such stuff. It is a browsers heaven. In the end I bought nothing more than a tea and we sat outside watching people walk by on the boardwalk. Joe asked what I was thinking about and I told him that I'm thinking of the name 'Comfort' and what name I would like to have, in the work that I do, as a means of keeping myself focussed.

Words like hope, faith, charity, joy ... popped into my head but they all sounded like drag names. Besides, not really me.

I've settled on a clumbsy name.


Tuesday, May 20, 2008


She walked with real purpose. Looking straight ahead. Though she was in a mall, she didn't browse, stop to look at things in the stores or the people flowing around her. She looked like she had a destination and the mall was an obstacle in her path. Forgive me for saying this but even after all these years I sometimes find it really hard to tell how old someone with Down Syndrome is - beyond childhood, teenager, adult that is. I would guess that she may have been thirty. I was waiting out side the dollar store where Joe was in a lineup buying me 4 new pairs of glasses and I was people watching.

Just before she got to me, I saw a woman come up to her and bring her up short with a conversation, the woman with Down Syndrome, looking annoyed, stopped, listened to what the woman had to say, dug in her purse and handed her a card. Then, without waiting for the woman to move out of her way, or saying a single word, she just pushed past and then there she was striding past me.

The woman read the card and then got visibly angry. I heard her mumbling something as she walked away. Joe came out and I said, "Follow that woman" so we meanandered behind her. I hoped, and my hope was rewarded. Finally, about halfway down the mall, she tossed out the card in a trash bin.

I broke away from Joe to go to the bin, when he saw what I was doing - I hadn't had time to explain, when he came out of the store we immediately gave chase - "you aren't rummaging around in the garbage." But by then I'd pulled the lid off and could see that the can had been recently emptied and the card was resting on the bottom. It was a real reach but I got it. I put the lid back on and then realized that I had an audience of at least twenty people, all stopped, all with tears of pity in their eyes.

Screw'em, I got the card.

I tucked it quickly behind me in my bag. Joe was desperate to get out of the mall. We got into the car and he handed me the wheelchair bag right away. I had explained to him on the way what I had seen and why I went into the garbage bin. So, he was curious now too. I held the bag in my lap and waited until he got back in the car after loading our shopping and the chair into the car. I found the note.

And read it. It was the size of a business card and on one side it said:

People with disabilities don't need tolerance, acceptance or pity instead we need equality, opportuntiy and respect.

On the other side it said:

Pick the one that applies to you:

I am not lost and do not need your assistance.

I am not a little child and do not need your help.

I am going somewhere, I am not wandering around.

I do not talk to strangers - you should follow that advice yourself.

There was no sign that this had been printed by an agency, it looked like something you'd get printed up at one of those business stores printing kiosks. I loved it. Still got it. I've decided that I'm going to hand this out the next time I have someone intrude on my life with assistance. I think it is a cool way to deal with it.

I still picture her in the mall walking along with such determination. I'm glad that she has a way of dealing with intrusion but hope that she hasn't lost the joy of the walk because of the regularity of interuption.

But more power to her.

Although she didn't look like she needed much more.

Monday, May 19, 2008

Monster Coffee

We were sitting having a cuppa tea and nibbling on a gingerbread man on Government street in Victoria. The day was hot, too hot, and I was beginning to feel the sun but I couldn't make myself move. I was enjoying watching all the people passing by and was enthralled by the sheer numbers of disabled people in scooters and electric chairs as the swept past. I sat with Joe and his sister Sharon, chatting. I'm a guy so I'm ruled by my eyes (shut up, I know that some of you will suggest that I am ruled by another, um, appendage) and I, of course, enjoyed some of the displays of summer bodies.

Across the street I noticed a young guy in a very cool looking chair rolling happily alongside a young woman about the same age. Even from where I sat I could see that he was a flirt. If he fluttered his eyes with even a bit more enthusiasm, I think he'd have pulled a muscle. She, was flirting back, I could tell by her body language that she was both surprised by herself and intrigued by him. I couldn't hear what he was saying, but it must have been a good patter.

They waited for the light to change in order to cross to our side of the street, when it changed, he said something, she laughed and covered her mouth. He nodded at her. Then she gave in and hopped on his lap and he sped across the street. They were both laughing, both having fun, both discovering each other.

It was cool.

What was cool was that I don't think that he was working any harder to get her interest, to charm her, than he would have if he was a walker. He was just a guy. She was just a girl.

For an instant I had some hope in the future. If these two could rise above walking and rolling, above dis and abled, above 'let's just be friends' - then maybe there will be a time when personality beats out pity.

So here's to hot summer days and even hotter summer nights.

Sunday, May 18, 2008


I'm up early this morning to head up to Campbell River to visit with family, Joe is rushing around getting things packed. (For those of you who might think me lazy in that Joe does all the packing - Joe won't let me pack, he folds, I stuff, he places, I toss - he's asked me, not so nicely either, to just let him do it.) I've got to get the pills done, we are kept alive by chemisty, and put the computer away.

So my post today is going to be brief.

Very brief.

All I want to do is remind everyone that we are only a few days away from Chewing the Fat's book club. I have stuff ready from the author, Mary Doria Russell for you on that day. I'm the kind of person who usually has to go Christmas shopping two or three times because when I buy a gift, I can't wait to give it, so it has been hard for me to not post this stuff right away.

So on May 22, Thread of Grace, will be discussed. I'm hoping for a good turn out and discussion. I loved the book and the big 'scene' will be the topic of my personal blog on that day.

I'd be curious for people to nominate other books for consideration, books that address disability issues or have primary characters with disabilities. I've purchased two such books based on reviews in the paper, Lottery, which has a primary character with an intellectual disability and October, which has a primary character with a physical disability. I've not read either yet as I'm finishing up Follett's World Without End.

Got go, getting glared at.

Saturday, May 17, 2008

The ICK Poll

What is it with straight guys?

I mean really.

We were travelling down the highway headed back up to Canada when an old VW van pulls onto the interstate just ahead of us. Joe pulled over to pass it and I asked him to stay behind for just a second. The van had a mural painted on the back, it looked like it might have cost more than the old van itself, it certainly used a lot of paint.

There were three women in the mural and they all had those breasts that were so big they just looked swollen. They all had pouty little girl faces with cherry red lips and huge doe eyes. They wore clothing that was impossibly tight over bodies that were geometrically impossible.

But that's not what caught my eye. Not even close. Who hasn't seen similar murals on similar vans. Who hasn't seen those women with breasts that point west on the back of truck mudflaps? So it wasn't that. What was ... um what's the word ... interesting, was that the women were all disabled. One of them had an amputated leg, one had dark glasses and a white cane and one was in a wheelchair. All of them had busts that looked like dirigibles and all of them were quite obviously disabled in some fashion.

I didn't know what to think.

Still don't.

I mean I think those kinds of murals are just plain weird. Don't the guys who drive these cars have wives and daughters ... or at least mothers? Isn't it a bit assaultive to thrust images of women with breasts so big that they are affected by the phases of the moon upon innocent passers by? So, in general, ICK. The objectification of women, the infantile focus on breasts over brain, I get. Double ICK.

But it bothered me that these women's disability bothered me. Why shouldn't women with disabilities also be seen as flagrently sexual beings? Why should disabled women be excempted from the lusty gaze of men? I wonder if disabled women might be disgusted at the mural, or would some feel at last included - albeit in the sticky floored world of male fantasy.

So, a Chewing the Fat poll ...

what say you about the mural. Beyond this kind of art being weird - what say you about three disabled women on a sexy mural with breasts that would keep them afloat in even the largest ocean?

Friday, May 16, 2008

Dear Dave

I was just putting my notes away after finishing my fourth, and last, lecture in the great state of Washington when I found a small piece of green paper tucked inside my notes. That I found it is a miracle because my notes are famously scattered and tattered and a little piece of paper could easily get lost in there for life. But this one didn't. It fluttered out just as I closed the file.

Picking it up, I thought it was just a random piece of paper and was about to scrunch it up and throw it away when I noticed that there was writing on one side of it. I stopped to read it. Joe was rush, rush, rushing me because we were wanting to get on the road to catch the ferry from Kingston to Edmonds. I folded the paper up and tucked it into my pocket without reading more than ...

Dear Dave,

We got in the car and I fussed around with Ted, our GPS, getting him all set to give us directions. Then we were off. We hadn't driven that route before and the day was beautiful so I soon forgot the little piece of green paper tucked into my pocket. We just missed the 4:30 ferry but the next was at 5:10 so we just enjoyed the time watching people and being catty about men with pony tails and women wired to cell phones. It was fun.

It was back in our hotel in Vancouver when I pulled my wallet out to get money for Chinese food delivery that I remembered the note, and then it was because the green slip of paper came out attached to my wallet. After paying for the food I sat back to read the note. It was only a few sentences long, it was extremely personal, and I felt the room fall silent around me as I read. I folded the paper back up and placed it back into my wallet.

You want to know what the note said, I'm sure, but I'm only going to say that it was a very personal note of 'thank you' to me for the work that I do and for something that I said which made an impact on the way of thinking of the person who wrote the note. I went to bed and after turning the light off I thought about the wonderful act of kindness that the note represented. Someone took the time, in a world where few of us have enough time, to say 'Thank You'. Someone took the time to express gratitude and gratefulness.

While the note touched me. While the words are still resting in my mind and heart. It is the reminder that a word of 'thanks' can mean so much, make such an impact, that is staying with me right now. Occasionally in my life I remember to adopt the 'attitude of gratitude' that should be common but is instead a rarity. Occasionally I work to purposely acknowledge the effect that others have on me. But I fail more than I succeed.

A little piece of green paper brought me such intense pleasure. A few words carefully chosen and neatly written are saved inside my wallet. Going to Washington was worth it, I gave four lectures, talked to dozens of people, got a lovely paycheck but more, much more ... God be praised ... I got a little slip of green paper!

Thursday, May 15, 2008

The Handsome Man's Eyes

Downtown Tacoma, Ted our GPS, leads us straight to the Hotel Murano. We park in the Valet parking area and get out of the car for a stretch. The hotel is noticable because it has a huge work of art that stands several floors high bolted to the front area. I've never been a descriptive writer but it's like the tail of the letter q as drawn by a small child who then filled in the bowl with green coloured crayon. The crayon part is replicated by beautiful green glass. Its a WoW piece of art.

Inside is even more spectacular, glasswork canoes hang from the ceiling and there are display cases of glass scuptures, structures and creations along the walls. The reception desk stands behind a long piece of glass brilliantly lit in radiating colours of the rainbow. I've never seen anything like it. We chat at the desk. Every floor is dedicated to the artwork of an artitian from around the world who works in glass. On our floor, when you get off the elevator, there is a huge glass panel that has quotes by the artist speaking of her work. then there is a display of one of her more famous pieces. Along the wall to the room there are pictures of her at work, creating.

I've been in a million hotels over the years and have never seen anything like this. We plopped down in the room and then I stunned Joe by suggesting a trip to the bar downstairs. I had noticed that the bar had this incredible fireplace but also that there was more art to be seen there. We splashed water on our face, thus refreshed, and headed back down.

The only disappointment to the place, which is pretty wheelchair friendly, it that the bar is up two stairs and it's necessary to take a ramp up towards the spa, make a turn at the top of the hallway and then enter an 'employees only area' where they store bar supplies and then through another door into the bar. It kind of takes away from the experience of the hotel. But the warmth of the staff combined with the opportunity to see new art was cool. Spun glass oars hung over the fireplace and on the far wall were two huge glass fishing lures. Man, this place is just cool.

When we got to the bar, Joe ordered a bud and I ordered a green tea (I am here to lecture after all) and I noticed a painting hanging on the wall beside the fireplace. It's an arresting piece. A man, young, handsome with terror in his eyes, looks out through distortions in the paint. There are so many questions in my mind about what the artist intended, and more importantly what did the man see when he looked at the world with beautiful face but fearful eyes.

"Ah, you've noticed the painting," said the bartender who seemed eager to get into a conversation. "I often help the artist through the same doors you came through and we chat about what people see when they see that picture." She then goes on to what one customer thought then another. "So the artist is in a wheelchair?" I said. She stopped, nodded, and said "Yes, he comes into the bar the same way you do."

I saw her look away and smile. A 'Mission Accomplished' smile. From the get go she wanted me to know that some of the artwork was done by artisans with disabilities. That 'one of mine' had work there hanging proudly alongside 'some of theirs'. At first I didn't know how to feel about that. Having him centered out. Having me centered out. Part of me wanted to get huffy. But that part was drowned out by the feeling of 'cool' - 'cool, it's great to know that artwork which drew me in was created by another person in a wheelchair. That the muse, the touch of talent, didn't skip the crip. I looked at the picture again.

And understood the young man's eyes.

Wednesday, May 14, 2008


It was pandamonium. Way too many people. Way too small a place. Way too many rules for where to stand. The cafeteria was full of confusion. In a wheelchair I'm not tall enough to scope the situation out and decide appropriate action. All Ican see is people swirling in front of me asking, "Is this where I go for the soup and sandwich?" "Is this where I go for the grill?" "Is this where I line up for the drinks?" Finally I see the line for the grill, just off the line for the salads, and head there.

I order a veggie burger, give my name for pick up, and then proceed along to pay. Our line is moving swifty, much more quckly than the other pay line on the other side. "Next!" a voicebox that must have been shaped at birth like a megaphone alternately shoves the last person away and pulls in the next calls out ahead of me. "Talk to me, I'm blind, what are you having?" it's an order, not a request, it's a statement of fact, not a plea for pity. This woman could teach drill sargents how to keep order.

Everyone quickly describes that they are having. Salad and fruit is weighed on the scale beside, keys are punched on the till, total is announced. "How you paying me? What size is the bill?" then cards are swiped or change is given. "NEXT!" At one point the customer didn't leave quickly and the woman slowly gathered up her stuff and didn't answer, "Is there someone in front of me, tell me your order," the next person quickly stepped into place and gave her order.

Her incredible efficiency was amazing. No dilly dally, no 'oh me oh my I'm so disabled be patient with me' - it was all straighforward effiency. I can picture her children standing at attention for inspection in the morning. When I was NEXT, I got up to the till and started to give my order. She could tell I was sitting not standing so she lowered her eyes to be about where she figured I was and continued to give instruction and take information. My money was swapped for change, I said "thanks" and moved on.

I've always heard about the need to adapt workplaces for people with disabilties. This may be the first time when a person with a disability was able to adapt a workforce. Where someone simply stated clearly what need to be done to get the job accomplished. And people did it. She had authority, dignity. She stated she was blind, not for pity, but to keep it clear that the interaction needed to be verbal. She whipped people through the line up faster than the sighted woman on the other side.

I wonder if she gets a kick out of that. But maybe she doesn't have time to notice.

"Next! Talk to me!"

Tuesday, May 13, 2008

I Did It

It was because of the pumpkin ravioli.

With walnuts.

Drizzled in white truffle oil.

Well, no.

It might have been the wild mushrooms.

In a parcel of pastry.

With greens and garlic.

I DID IT. I guess is my point. I checked into the Phoenix Inn in Olympia and as I received the key the desk clerk told me that room service was done by the restaurant across the street and that I would find their menu in the room. I asked if they had many vegetarian items and was told that they had several 'specialty' dishes and then she confided to me that Olympia was a mecca for vegetarians.

I couldn't find the menu in the room so I called the number listed in the directory of hotel services and the nice young lady went through the menu. I was tempted by the vegetable tart and even more by the curried vegetables with fried tofu. But I love mushrooms and Joe loves ravioli so that was settled. As we were wrapping up I told her our room number. She told me that it would have to be picked up tonight as she was the only one on shift.

Mushroom Strudel. Gone.

Pumpkin Ravioli, with walnuts, in truffle oil. Gone. Gone. Gone.

We never get food like this for room service. Ever. An evil plan formed in my mind. I tried to stop myself, I did. Really. I did.

But the words came out of my mouth, "Oh, well, we'll have to cancel the order, I'm in a wheelchair and it's just to difficult to get out and over there."

There was a dramatic pause, then she said, "Hold on a minute." I heard her cover the receiver and then call to someone else. "There's a guy at the hotel in a wheelchair, think we can get the food over to him?" Someone answered in the distance, back on line she said, "We can get that over to you."

I thanked her. Hung up. And giggled. It worked. I know I shouldn't have done it. Using my wheelchair. I know it was across the street but Joe's foot is still bothering him badly. I know we should have just thanked them and then called for a pizza.

But ....

The parcels of pastry were good.

Monday, May 12, 2008

Never Thought

He had big, rough, hands. Men's hands. He wore a suit jacket that was tight across his shoulders, an uncomfortable fit. He was all dressed up, his hair still wet from the shower was brushed back and the part in his hair was military straight. She was in a dress that looked new with matching shoes that looked difficult to walk in. Between them they carried a baby, first on his shoulder, then on hers. It was like they each wanted her, each had to touch first her, then each other. They looked like they probably saved to buy these clothes and go into this restaurant. A first mother's day. Joyous.

Outside the hotel, waiting as Joe checks in, an elderly woman and two daughters come out. The signs all round announce a Mother's Day Buffet. They all look fed and watered. Mother stops and rests against her cane. Daughter, skirted, steps into her and gives her a kiss on the cheek. Daughter, in pants, takes the opportunity to step around and away from mother's embrace. They all pretend they didn't notice that daughter in pants avoided the touch, the Mother's Day obligation. Skirted daughter makes a quip I can't hear. They all laugh, relieved the moment is far enough away to be 'in the past'. Uncomfortable.

At the movie theatre there were only maybe 6 or 7 people in the same theatre watching Redbelt with us. Let's see, there was the two of us, two lesbian moms with a teenaged son, and a couple arguing over going to that particular movie. On the way out, I wait on the side of the road as Joe gets the car. The two moms come out and stand and wait at the traffic light. The boy is in the middle. The mom closest to me reaches out and strokes the boys neck, gently. He reaches out first to her and then to his other mom. The three stand in tender embrace until the light turns green. Lovely.

Looking for magazines at the grocery store I'm parked right beside the cards. A good looking Dad pulls up with a boy in the grocery cart and a girl, of about 4 or 5, standing with him. He starts picking up Mother's Day cards and reading them. "Mom says that if you cared you would have got a card a long time ago," says the little girl. Dad doesn't take the bait and hands a card for the daughter to look at. "Mom says that you should pick it out yourself," daughter states haughtily. Dad still does not take the bait, he just puts the card back. "Mom says ..." daugher starts in again. Dad bends down and says, "Just tell Mom that Dad loves her, even if he gets to busy to show it sometimes." Clever.

At dinner a Father and daughter take their seats near us. She's small but I'd guess she was maybe seven or eight. She's dressed up beautifully and is serious about her manners. She says 'Yes please' and 'No thank you'. She speaks with only a hint of Down Syndrome accent. They are waiting for Mother who has had a day off as Dad took care of her. Mom arrives looking beautiful and elegant. She kisses daughter then husband and sits down. The waitress takes the order and suddenly in a rush of childlike excitement the girl blurts out, "Happy Mother's Day Mom!" leaping into waiting arms. Mom, crying, looks at her husband and says, "There was a time when I thought there never would be a happy M..." but she can't finish. Father wipes his eyes and says, "I know." Perfect.

To Mothers Who Never Thought ... I hope yours was happy too.

Sunday, May 11, 2008


I've been trying to shake a feeling of 'ICK' all day.

Yesterday I got up just after4 with the idea of writing my blog before heading to the airport to fly out west for my lecture tour of Washington and British Columbia. But, though I was up at 4 all I managed to to was sit on the side of the bed and stare vacantly out into space. Joe was 'chipper' and kept saying, 'Are you going to write your blog?' or 'Have you written your blog yet?' After 5 or 10 minutes of this he simply gave up and left me sitting on the side of the bed.

By the time we got to the airport I was beginning to feel the joy of travel again and we chatted with the Air Canada personnel at the desk and then got a push down to the security check. I was asked, as I always am, if I could walk through the scanner. I say, 'no' and then push around the side for the manual pat down.

I hate the pat down.

It is totally weird having some guy I don't know run his hands all over my body. Even though the hand is in a glove, even though they use the back of the hand (mostly) I still don't like the experience. But most of the guys that do it, do it well, there is an air of efficiency and it gets done quickly and though I've been touched I don't feel touched, if that makes any sense at all.

Well, it was different yesterday morning.

The guy put on the glove, making a show of himself doing it. I only noticed him because it seemed that he really wanted me to notice him. Then he patted me down. From the moment his hands touched me I knew that this was different from any other time I've had this experience. I wanted to tell him to stop, I wanted to ask for someone else, but I couldn't. I didn't know what he was doing differently. I couldn't see what he was doing differently. I just knew it was very, very different. I was being touched. Icky touched.

I glanced around me and everyone was doing what they should be doing. No one was noticing. I begin and inner dialogue. "I am just tired from the early morning, I am just on edge from a slightly low blood sugar reading, I am just ..." But none of that helped me. I was being touched, dammit, all over my body.

Then, suddenly, it was over. I got my stuff from the belt and the pusher was there to help me to the gate.

I said nothing.

I didn't know what to say.

I still don't know how to describe how his touch was different from every single other time I've been patted down.

And because of that, I wonder.

Will I be believed?

Friday, May 09, 2008

Under A Stack

I finally talked yesterday with a high who's fairly high up in the heirarchy of his organization. He'd left me a message over a week ago. I'd written the message down, fully intending on calling back that day, and didn't. Over the course of that day the message pad must have gotten moved in a shuffle of paper and once covered by other papers the paper and the message it carried were lost to me forever.

Yesterday I look at my desk objectively. It's a muddle of papers, journals (read and unread) - an unattractive jumble that reflects too well my inner jumble. Being 'organizationally impaired' is for me more disabling than anything to do with the wheelchair. Rose had made a comment or two. Joe had made a comment or two. Manuela would just glance at the mess, up and me and back at the mess. Non verbal communication at it's best. Enough with the comments, said and unsaid. I cleaned up the desk.

In doing so I found the message. I felt immediately bad that over a week had passed but I knew him and he knew me so he wouldn't be 'surprised' that I'd misplaced a note on my desk. So I called. He and I go back nearly 30 years and I explained my situtation when apologizing. I like surprising people with the truth. "Gosh, I've been so busy ..." would have worked. But, "Was cleaning my desk and found the message to call you under a tumble of paper ..." has the sound of honesty and that's a better place to start.

Turns out that he'd been meeting with others in his agency about the fact that staff more often breed dependancy than they encourage independance. That people with disabilities should expect more in service, they should expect that the staff who work with them have the goal of individuation and freedom not subordination and control. He was quick to say that he didn't think that staff were malicious or mean spirited but that the heirarchy established within the very relationship between care provider and care recipient lends itself to that kind of problem.

So we talked about what could be done. He believed that we needed to make the problem visible. That once the staff 'saw' the situation they would be automatically willing to look at rectifying it. I believe this too. So we talked about what my role could be in all this.

As we talked part of my mind was singing the Hallelujah Chorus. It is so encouraging to me when agencies take the time to think through the inherent problems in a heirarchical, power based system - and then choose to take action. Agencies, after all, are not rigid, stone cut buildings, but colaboratives of people. When people's minds stay flexible, open to questioning, invested in new ideas - who organizations can shift, become something more, something esle, something better.

I returned a call, late, and got a message of hope.

I'm glad I cleaned my desk.

Thursday, May 08, 2008


I could be rolling in dough, really. If I turned it into cash I could fill the Grand Canyon with loonies and toonies. Every day I'm informed by people with great 'safe' names like Amy and Rick, that I've won lotteries I haven't entered with numbers that I haven't paid for - how lucky is that? Winning 2 bajillion dollars without spending a cent! I've gotten to the point that I simply delete any email that has 'You Won!!!!!!!!!!!!!!!!!!!!" as the header. Shit, I can't even win lotteries I DO buy tickets for.

The emails that really get me are the ones that purport to write to me on behalf of some person, facing huge personal tragedy who needs my help. I've had some 'woman' write to tell me that she needs to escape the hands of her abusive husband could I hide her money for her, some 'guy' write to tell me that he is dying from a fatal illness and wants to keep his money safe from a greedy family, another poor soul is 'facing life in a wheelchair' and needs to escape a warring country to a land of peace ... oh and ramps - they all, to a one, want to pay me to help them. They are relentlessly flattering to me about my character and implore me to help them.

These emails seem to me to be the step children of telathons. They take tragic circumstances, often presented as a disease or a disability as a means of evoking pity - then they throw in money. Telathons want your money, these emails promise you money. They combine pity and greed and hope that the mix will lure their readers down a path that begins with avarice and ends with bankrupcy.

Mostly these make me angry at the idea that someone may be fleeced by these emails. But part of me wonders what kind of people would WANT to make money on the back of someone else's misery. If I had the character that they seem to think I had, wouldn't I help them for free? Would I need to be given 1 million, 5 million, 10 million dollars just to help them get away from a husband who beats, a country in revolution or to treatment for disease or disability?

Those who would use the misfortune of others to swindle are a class of people that I don't understand. Those would would seek to exploit the situation of another for personal gain - who brought you up? Perpetuating the view of disability as a tragedy pisses me off. Buying into the stereotype makes me even more furious.

So if you've got a kid with a disability in a country that's full of revolution and violence and you live every day in fear of your husbands temper - don't even think of asking me to take the 800 billion dollars you happen to have tucked at the back of your sock drawer and 'hold' it for you while you escape (all for a reward of unimaginable size) into Canada. Because, if you've read yesterday's blog, I've troubles of my own.


Wednesday, May 07, 2008

I Have

I'm wondering if you, dear reader, ever wake up in the middle of the night full of fear and panic, reviewing decisions you've made, asking yourself if you've done the right thing.

I have.

I'm wondering if you, fellow traveller, ever look at the people you know well and wonder, really wonder, what they think of you - deep down.

I have.

I'm wondering if you, mes amis, ever jealously guard and protect a part of yourself that you are dying to share with another.

I have.

I'm wondering if you, anonymous one, ever hold on so tightly to a thought, an idea, a preconception that it loses life.

I have.

I'm wondering if you, screen reader, ever feel like a morning is not filled with hope and wonder but with futility and loss.

I have.

I'm wondering if you, friend of fat, ever try to push the inevitable over a cliff only to fall with it and land hard.

I have.

I'm wondering if you, zaza and zozo, have ever picked up the pieces of your life and then spent years trying to put it back together.

I have.

I'm wondering if you, friend and foe, have ever considered that the cost of being human is maybe just a bit too high, a bit too much, a bit extraordinary.

I have.

Tuesday, May 06, 2008

A Beautiful Morning

Cora's for breakfast is a luxury. For those in the world where there are no 'Cora's' I can only say, too bad. Cora's is open for breakfast and lunch but they are famous for their breakfasts. They are wonderfully decadent. The food is created with an eye to art. I have a meeting with Jon, the one guy I supervise at Vita, and I suggest to him that we meet at Cora's. He's never been before, I know he'll be awed by the food.

My supervision style is 'let's chat until we're chatted out' so that's what we do. Jon talks about what he's up to, has a few questions for me, I have some for him. Breakfast over, meeting finished, it's a nice way to start the day. We both leave Cora's with a list of things to do. In my mind I'm already composing an email that I've promised him I'll write. The ramp down the curb cut to the car has a huge hole left by winter thaw so I push over to the second ramp and descend there. A car has pulled into the disabled parking bay beside mine. There are two people in the car, a young man in his twenties and a woman, by looks I think is his mother.

She comes round to his side of the car and helps him out, he walks the 'There Was a Crooked Man' walk and his mother slows her pace to walk with him. A few feet along the sidewalk, towards Cora's front door, he stops. Takes a breath and says, "What a beautiful morning." His mothers face, full of rush and worry seconds before, loses all it's tension and she smiles at him, "Yes, it is a beautiful morning." They proceed ahead.

All day yesterday I thought to myself, "What a beautiful day." Just the thought made it so.

Of course there were stressful moments, it's work. Of course I had to do things I'd prefer not, it's work. Of course. But outside my office window there is a huge vacant lot. Grass grows randomly in clumps. A pile of wood rots on the south side, a pile of metal rusts on the north. Not pretty. But over the last few weeks two animals, about the size of really large gophers have moved in. They house themselves in the pile of wood and play around the pile of metal. Ann and Franca are convinced they are hedgehogs, Joe assures me they are not. I don't care. They are cute. That's enough for me.

Several times, I stopped work and watched them play, thinking "What a beautiful day."

It took someone else to notice it. Someone else to comment on it. A child that others would consider a burden lightened the load on his mothers shoulders, on mine, just by noticing, simply, that it was a beautiful day.

Monday, May 05, 2008


"At least you aren't alone this time," Joseph said indicating the woman in the wheelchair on the other side of the aisle. I nodded, smiling at his easy comfort in joking about my disability. We had gone to see "Iron Man" as part of his 14th birthday celebrations. Joe and I sat at the back of the theatre where the wheelchair seating was. To be honest I was a little startled to see someone else there in a wheelchair, I've been to that theatre many times, never seeing another wheelchair user.

I had insisted that the others go and sit down near the front, I know that's their preference, as we were all just going to sit in the dark anyways. Ruby kept leaving her seat and walking back up the aisle to us to get our movie treats as she preferred them to theirs. She'd arrive, all 18 months of her, and hold up a cup for me to fill and then she'd stride back down to her seat. She was almost more fun to watch than the movie.

Later, back in the hotel, everyone had gone off to go swimming and I stayed back. I wanted time on my own, I like quiet, and the pool area isn't really accessible and it takes a lot of work to get into it. I wasn't up to it, Joe wasn't up to it, so I just stayed back in the room. Quiet descended as soon as they were all gone. How parents put up with the noise noise noise all the time baffles me. I lay down on the bed to read and then thought about what Joseph had said in the theatre, "At least you aren't alone ..."

Obviously I wasn't alone, I was there with family and friends. I was surrounded by people. But Joseph caught a small truth, even in the company of others - it's possible to be quite alone. Even when well integrated into the world - it's possible to be quite alone. Even when fully included - it's possible to be quite alone. I've been alone before. I worked a job where I was the only guy in an office entirely made up of women. I've been in places where I was the only gay person there. Often I've been the only fat person in the room. So, now, the wheelchair thing is just another way to be separate.

I wonder how much I should identify with my disability. How much of who I am becoming is informed by the set of wheels attached to my bum. Certainly I see the world differently and understand people in a whole new way. Certainly I think about physical barriers in ways I didn't before. Certainly I am dependant on others in ways I couldn't have imagined. But what does that all mean?

I closed the book I was reading and thought about what Joseph said, "At least you are not alone ..."

Those are powerful words because ultimately isn't aloneness what we most fear? The basis of my faith comes from the 'creed' - We are not alone, We live in God's world ...

To whomever you were, sitting across the aisle from me at Iron Man. Thanks for going to the movies on Saturday. It was nice not to be alone.

Sunday, May 04, 2008

That Word, This Girl

In the lobby of the hotel there is a cluster of couches and chairs. I roll up beside them, put on my brakes and wait. Joe is gone back up to the room to get the luggage and call for the car. We stayed in the hotel because he was in too much pain to drive home. This morning he says he feels better and, in truth, his limp isn't as pronounced. I watch the morning traffic around me. People rushing with purpose out to cabs, others meeting up with big 'Good Mornings', a Mother and Daughter saying a tearful goodbye. People watching at its best.

Then a Father and a young teen with Down Syndrome come rushing by. They are back in a few seconds and Dad instructs Teen to wait on the couches as he checks out. She settles back into the softness of the cushions and, like me, watches. I glance at her and realize she hasn't seen me. Sitting still in my chair I've become a potted plant. I feel a smile flicker across my face. "So Visible, Easy to Miss" I sing to myself the first couple lines from the Cory Hart song.
The noise is heard before the frenetic activity is seen. A group of 5, seeming like 25, young teens enter the lobby as a unit, a 20 legged beast. The boys, 2 of them, are struggling to keep up with the 3 girls who talk quickly bouncing words off each other with skill and precision. The girl next to me watchs them. I watch her watch them. She looks at them with ... not envy ... maybe longing. A smile lights up her face and she leans forward with 'notice me and include me' anticipation.
Then one of the boys drops something he'd been holding in his hand. A girl scoops it up and hands it back to him saying, "Stop being so r#tarded, will you?" Then they all pounce on him laughing and teasing, the word r#tard flew around. It left their mouths aimed solidly at his self esteem, it missed the target and instead landed solidly to my left. An anticipated longing to belong became a fearful wish not to be seen, for invisibility. Hurt flooded her face. R#tard pierced her heard, her soul, her wish to live.
I was choked with anger. I wanted to cause a scene but knew that was exactly the wrong thing to do. I rolled my chair a bit forward and the movement caught her eye, she looked over at me and now I see tears, unfallen, in her eyes. I rolled my eyes and said, "What mean mouths they have." She nodded silently, startled at my presence.
I looked away. Hoping that my simple message finds its way down deep inside her. Hoping that the realization that they are simply issuing mean words from mean mouths will ... at some point comfort her. Hoping that she comes to realize that she has the power - inside - to withstand whatever comes - outside.
Her dad is back, she gets up and they walk by the group. Who notice her. She stares at the with a mixture of hostility and understanding. "She knows," I think, "she knows."
The group of teens, notice her notice them, one of the girls says, "Oh my God, I think she heard."
I'm surprised, deeply surprised, that in that voice was regret. Then the girl covers her face and runs out of the lobby, extremely upset. The other four look confused. Then 16 legs follow the missing girl down the hallway a buzz of words flying around them.
I'm relieved that they are gone. I'm drained from the anger, unspilled. But more, I feel unable and insignificant. How, how, how, how, do we get the idea that 'r#tard' is a hateful word that hurts teen girls with Down Syndrome across to those who just don't get it? Yet even girls who know better still fling it around. What do we do?
I don't know.
And not knowing what to do or how to do it - leaves me feeling inadequate. Hopeless.
By God, I hate that word.

Saturday, May 03, 2008

Maybe A New Home

We must have looked like quite the pair. Me in my wheelchair, Joe walking like he needed to be in a wheelchair. But we'd made an appointment to view an apartment in Toronto and Joe was insistant on going down to see it. I didn't tell him that I'd read several of the BADD posts about people who were refused apartments because of disability and that I had a growing anxiety about apartment hunting. So there we stood on the other side of a glass door looking into a lobby and waiting for the building manager to come out to greet us.

I was waiting to see her eyes. I wondered if they would narrow in disapproval or widen in surprise when she saw us, two men, one of which was in a wheelchair. She came into the lobby, seeing us through the glass and opened the door to welcome us. Her eyes showed nothing, not even the slightest hint of either surprise or disapproval. We spoke briefly about what we were looking for and what we were hoping to see. Without a moments pause she took us in the elevator and up to the 5th floor. She had a variety of apartments but felt that one on a lower floor would be better for someone in a wheelchair. I agreed.

We went into see the apartment. It was a mess because it's being entirely renovated. The kitchen was torn apart and the bathroom was under construction. But we were suprised at how big it was. The view from the windows wasn't spectacular but the size of the closet in the bedroom was. She pointed out several features of the apartment, including the doors - wide enough for a wheelchair to pass. I was surprised at how seemlessly, how effortlessly she spoke to me about issues around accessibility. The big deal for me was that the kitchen was accessible. I'd be able to help out with the cooking. Awesome.

Downstairs we met her husband. When talking about parking, I asked if they had any larger spots for people with disabilities. I was told that they didn't but that what they would do is move the parking around so that we were in a spot that would be most convienent for us. That the building had a policy that people with disabilities would be accomodated in the parking lot even if that meant moving someone else from one spot to another. That's kind of cool.

We left with the application in hand and the feel of warm handshakes - this building wasn't our first choice as a place to live. Not quite the location we were looking for, not quite the style we were looking for - but maybe they were wrong. It isn't location, location, location ... maybe it's attitude, attitude, attitude.

Friday, May 02, 2008


So, this morning I'm worried.

Last night after we got home, Joe was very quiet. I went into my office like I always do to check emails from the day, see if there are any comments on the blog and play a game of Mah Jong. It's a little ritual, I like it. But it was different because there were no sounds of Joe puttering around in the other room. Joe putts. He is the kind of guy who can always find something to do and is always busy at something. We've all teased him about it. Having a bunch up to watch a DVD is great, but when Joe gets up to get a beer or go to the can, he's not back for 15 to 20 minutes because he starts puttering around. Drives us all mad.

But there was only quiet from the other room. So silent that I quit my game and came out to see what was up. Joe was sitting on a chair in the front room. He looked ashen. I immediately got scared. I came in and sat down, asked him what was wrong.

"My heel, it's unbearable."

Joe has been limping for a while and after xrays it was determined he has a spur in his heel that has to be surgically removed. Joe suggested that he go through the surgery in the summer when we are travelling less. (Oh, yeah, and moving.) I got up and got him a pain killer and in a very short time he was feeling better and putter sounds were coming from the kitchen. I offered help, he didn't want it.

He's in bed right now, sleeping, he took a sleeping pill because the pain was back and bothering him. I won't wake him until it's necessary.

I feel so helpless.

I feel like there is something I should be doing - but I don't know what.

After the years that Joe has taken care of me, I should have picked up on what I should do to take care of him.

We have a busy couple of days in front of us, I've got to be down to the office early today. This afternoon we've got to go look at an apartment. Then tomorrow we're planning to see Mike, Merrissa, Ruby and Joseph on the occasion of the kids 14th birthday - it means a drive to Belleville and back. A drive on Joe's bad foot.

He doesn't know it yet, but his needs come first.

He doesn't put himself forward much, prefers to be in the background, all decisions about the next couple of days will be about his needs.

That, at least, is a gift I can give him.

The question is - can I make him take the gift?

Thursday, May 01, 2008


For information on Blogging Against Disablism Day, please visit

This day is brought to you by The Goldfish.

Blogging Against (My) Disablism Day

It's constant. Being stared at. I can't go into a mall, into an office, into a store without people swinging their eyes over at me and stopping, frozen by what they see, staring. It's always been thus. Before it was because of my weight, my size, now its because my bulk moves on wheels. There is a part of me. A strong part of me that knows how to slap those eyes away. Knows how to understand their need - standing on the top of normalicy - to look down upon me, catagorize me, label me. I honour that part today. It's blogging against disablism day. I hold that part of me up to you - acknowledge it, applaud it, accredit it.

(But what about the times, the few times, when I look in the mirror and wish to see something else? To be someone else? To have something else?)

It's constant. The tone of voice that judges. The high little girl tones of 'sweetie' and 'pudding' that people now call me. Like being in the wheelchair has taken away from me my adulthood, my manhood. The tone comes with the touch that belittles. The unwanted hand on the shoulder, the pat on the back of the head, the 'big hug for the big guy' - all things done, not for me but to feed the self esteem of others, to reinforce their relief at not being ... me. I know how to understand this. I know how to respond. To brush the hand away, to engage them in ways that morphs that tone from 'talking to a child' into 'talking to an adult'. I know how to use humour, to use wit, to surprise the world with intellegence. I honour that part today. I proudly place it before you. It's the part of me that maybe I most cherish. It fights a battle that's not even acknowledged. And it wins, mostly.

(But what about the times when my inner voice diminishes? When the tone I use to speak to myself assaults me? When the only ears that hear the words are mine, and a tone of loathing escapes hidden from the pen it's held in?)

It's constant. The assumptions of incompetence. Do you need me to do that for you? Here let me help? The worst ever, waiting for Joe to return from the washroom. We are at a coffee shop, having tea, we'd each gotten a slice of banana bread to go with our tea. A woman at the next table, seeing me sitting and waiting asks, "Do you want me to cut that for you?" I say no, thanks, but no. I know how to understand this. I do. I know what to do with it. I do. I know how to 'be in the world' to act with dignity when being diminished. I know how to quietly push away offers that look kindly but are there to reinforce the heirarchy between the priveleged and the pitiable. I know when manners work to reassert equality. I'm good at it. I honour that part today. I'm glad of it. I feel good after such interactions. Good about my ability to restrain anger. To rise from 'less than' to 'more than' with only a few words.

(But what about the times where I just don't try? Where I give in to my own preconceived notions of disability? Where I figure giving in is just easier? Where I just don't want to push at the boundaries of my incompetence?)

The oppressor without - I'm good, I've got that down, I know what to do.

The oppressor within - that's the real battle, the hard battle, the one I ultimately need to win.