Tuesday, March 31, 2009


I got the email and started crying.

I'm still crying. I can't seem to stop.

After 133 years of captivity, the institutions of Ontario are closed. The last person moved home yesterday. The hallways echo empty.

I worked briefly in institutional care. I know the smell of captivity. I have heard footsteps resound down long corridors. I have tasted food cooked without spice. And I knew it was wrong.

The first day I worked in a facility, I wondered, aloud - to others present, why wards were necessary. My questioning shocked even me. There was no such concept of 'community living'. There was no such imagining. We looked outside institution windows and did not understand what we saw.

Walking down a hallway with keys in your pocket was an experience vastly different from those who lived behind the doors that the keys fit into. Everything was structured to keep 'them' them and 'us' us. Everything was manufactured to keep the keepers from discovering the humanity of the kept. Everything was done to ensure that heirarchies made connection impossible.

But something happened.

I guess the call of 'home' is a strong one.

I guess the desire for 'freedom' is a powerful one.

I guess the longing for 'justice' is an overwhelming one.

And they started coming home. Slowly at first. They moved into neighbourhoods. They moved into communities. They moved into real life. And they succeeded brilliantly. Beyond expectation. Beyond possibility.

This victory.

This moment in history.

I am part of it.

But it does not belong to me.

It belongs to those who came home. It belongs to those who claimed home. It belongs to those who made home.

To those self advocates who first braved the streets of freedom. We salute you. To those self advocates who laid claim on justice. We honour you. To those who died waiting. We mourn you.

Oh, my, oh, my ... I can't stop crying.

Monday, March 30, 2009

Someone Else's Journey

Shut up, your help is not wanted.

Shut up, your help is not wanted.

Shut up, your help is not helpful.

Shut up, your help is not helpful.

I've been talking to myself constantly for the last two days. I know, from my experience of disability over the last three years that help not wanted can be intrusive, that help not wanted can be demeaning, that help not wanted can be anything but helpful. I know that. I KNOW THAT. But still the will to help can be outrageously strong.

Our friend spent the weekend here with us. He's been battling the demon of addiction for some time now. Has been to rehab. Has tried desperately to live clean and sober. He has the potential for such a happy life - yet that potential keeps getting smashed on the shores of bad decision after bad decision.

But he's on an upswing. He has made nothing but progress for weeks now. Not months but not days either. We're so hopeful. But we were afraid of this visit. We live in the center of Canada's largest city. We know, conceptually, that drugs are available at the doorstep of our apartment building. Just like they are available at the doorstep of every school, every office building, every grocery store in the land. We knew that this visit would be successful only if he made a thousand and one good decisions.

So we watched.

Seemingly unimportant decision one.

Seemingly unimportant decision two.

Seemingly unimportant decision three.

And I kept my mouth shut. I know that this isn't my journey, that these aren't my battles, that only he can make these decisions that only he can walk the path set before him. And that he has to walk them alone. We can cheer from the sidelines. We can pray in the dark of night. We can hope from afar. But that's all we can do, we do it with gusto, but it's all we can do.

That and shut up.

He went home feeling victorious.

I feel like I walked up 12 steps this weekend ... and the view from the top, is spectacular.

Sunday, March 29, 2009

Oh How I Hesitate ...

I've even considered taking down the post on what happened at the airport just to stop the flow of comments and emails. It is taking a mammoth act of will to even look at what's going on here on the blog. I got up to write this because I feel that I have to even though I am terrified of reigniting the firestorm which is only now slowly dying down.

The comments that are personal attacks are really quite rare and are not what concern me much. Remember I am a public speaker, one of the only professions where you are evaluated (anonymously) every time you go to work. I just finished a big one here in Toronto and saw a few of the negative evaluations - they sting but less and less over time. So, those that are critical of how I told the story, the information I did or did not give, who I am as a disabled guy - OK, I actually expect those, I don't like them, I'd rather live without them, but I expect them.

What bothers me though are some of the other things that are said. Maybe it really is about how I told the story but here's my concerns with some of the comments ...

1) I don't like stereotyping. I wrote about the behaviour of one person. One person. I was not attacking an industry. I was not attacking a profession. It was one person. I am capable of seeing one person as distinct from many people. I have had more negative encounters with waitpeople in restaurants than I ever have had with security people. Most of my encounters at the airport are respectful. I get patted down by these folks, they touch me, and almost all do it with incredible professionalism. I didn't expect my story to lead to racist remarks about security people, attacks on them as individuals or as a group. This was ONE GUY. I'm sure I wrote about just ONE GUY. What he did was serious, needs to be dealt with, but it was one (1) guy.

2) What does IQ have to do with bigotry? So many commentors have gone on and on about how stupid and moronic this guy was. Well, I think what he did was based on bigotry, on prejudice about who people with disabilities are ... I don't think that this is tied to intellegence at all. Have you met teachers who think disabled kids can't learn? Have you met university professors who think that the elimination of disabled genes is a good idea? Have you met white collar professionals who believe their tax dollars are wasted by increasing access in buildings and on streets? I have. The idea that 'negative characteristics' are located in 'stupid minds' is what leads to the presumption that intellegence is 'good' and everything else is 'bad'. That maybe we should somehow exclude those who have minds that are a little slower. These comments make me both fearul and nausious.

3) I hate, full on hate, the 'R' word. It is used here in the comment section, it is used by those commenting on the story on other sites. Using hateful language about disability to criticise someone else's behaviour regarding disability is ... odd. It's upsetting. I don't know how to comment except to say ... and you want me to allow you to express my outrage? my concern? If I could I'd be protesting YOU. At least I can find the source of the this problem and hopefully have an effect.

4) A few, but certainly not all, of those commenting are simply venting their rage without any sense of sympathy for me, for what it felt like for those few moments when I did not exist. I realize that the story means something very different to these commentors than it does to me. But I wrote about invisibility and then become invisible in the comments. The behaviour of people is about it's impact on others, isn't it ... or maybe not.

5) Those who are visiting the blog do not know it at all. This is to be expected of course. I've gotten more visitors in two days than I have in the history of the blog itself. But I've written, several times, about the pressures of a daily blog, a full time (and a half) job, a relationship, life with a disability and 'other interests'. I made the decision that if I was going to have a daily blog I would not be responding, like many do, to comments in the comment section. That I had to decide where to put my time. It's been hard but I've kept to that decision and let the discussion run without me. Chewing the Fat was established with a few rules that my regular readers know and expect, it would have been nice if those being hostile about my lack of 'presence' had done just a wee bit of research on the blog about the blog.

I am breaking all sorts of my internal rules in writing todays blog. I don't want a new volley of attacks but if I'm going to stand against disablism and disphobia, I need to stand here too.

Saturday, March 28, 2009

What's Next ... Airport Wise


Yesterday I was giving a lecture here in Toronto, I got home and promptly fell asleep on the couch. I glanced at my blog and saw a lot of comments on the entry I wrote about the airport. I read a few and realized that somehow my little blog got plastered all over the web. Very cool, I suppose. Except I got more visitors in two days that I have in years. How I'll ever beat that I don't know.

After having written the blog, before anyone much had read what I'd written, I did some research and sent off an email about my experience to my airline, and the airport authority describing my experience and my upset. I left a phone number and over the lunch break ended up having a very good and, I believe, productive talk with someone who took my concerns very seriously.

There are questions about advocacy, do I go public and have them inundated with emails and complaints - from people who did not experience the problem - or do I continue the dialogue without the 'white noise' of public protest. I wrote my blog for my blog, that it went international is ok with me but wasn't my choice. The resulting debate between 'this is all bullshit and wouldn't happen' and 'this kind of thing has happened to me' is just fine for my comment column.

Me, I'm going to advocate for change in a way that makes sense to me. I will speak for myself, with my own voice and my own passion. Failing this... full disclosure from date and time to flight number. Right now I think hundreds of complaining voices is premature to the process. I believe in change and I believe there is a place for public protest. But one step at a time, let them deal with me ... and failing me ... you.

I promise to keep you all updated.

Friday, March 27, 2009


It got to be a bit of a ritual. I pull out of the elevator in the morning to wait either for WheelTrans or for Joe to pick me up. The Superintendent of our building is a morning person and he'd come out of his office and chat with me for a bit. He had spent much of his youth in England working for the Air Force and had a lot of stories. He's just a good a listener as a talker, so our conversations are lively and fun.

Then, something went wrong.

He just wasn't there anymore.

When we saw him during the day he looked tired and drawn. Just before our last trip he called us aside and told us that the cancer he'd fought years ago had come back. He was putting a brave face on it but I could tell he was frightened. Both of us felt honoured that we, as new tenants, were on the list of people he told. Both of us wished that there was something we could do.

I saw him this afternoon. I came home from work and he came out of the office and sat on the bench in front of the building. I sat in my wheelchair and we talked. Not about cancer, not about illness, just about travelling. He knew, from his wife, that we had been to California so I told him about the flight, the weather, the security guy who wanted to take my luggage.

God, I desperately wanted to ask him how he was doing. I wanted to know about test results and treatment options and future plans. But this conversation wasn't about my needs, it was just a chat like we've had many a morning. He indicated that it was getting cold and he had to go and tell one of the contractors about a job. I went inside, glad of the warmth myself.

His wife came and joined me and said that it was good to see him just sitting and talking again. Doing something normal. Telling stories. Being interested.

I watched him walk back into the building. Trying to fight the exhaustion that was overtaking him. He sat on the sofa and we talked a little longer. Joe finished unloading the car and came to get me into the apartment.

The only gift I could give him was normalcy.

I knew as he unwrapped it that it was exactly his size.

Thursday, March 26, 2009

An Elephant Disappears

Suddenly, I lost existance.

I was waiting patiently in the airport, quietly watching people go by. My luggage was stacked up next to me and I felt that I looked like quite the world traveler. Suddenly this illusion was shattered when a security type guy came with a luggage cart and began loading my luggage. I sputtered a protest, 'Hey, that's my luggage.'

He looked at me, annoyed and said, "Luggage can't be left unattended."

"I AM attending it," I said incredulous.

"You don't understand, SOME BODY needs to be in possession of the luggage," he said and I didn't get his implication, not yet, I was still too startled.

"I am in possession of this luggage, it is MINE," my voice is rising.

He looks at me with exaggerated patience, "SOME BODY (long pause) needs to be attending the luggage."

I got it then, I wasn't SOME BODY, "Are you suggesting that I can't supervise my own luggage because I'm in a wheelchair?"

"You need to settle down, sir."

"What are you going to TAZER me? You are stealing my luggage," I'm almost screaming now.

"Sir, Sir, SIR, you don't understand, luggage can't be unattended," what world have I slipped in to?


At this point a pilot in uniform happens by and sees a commotion. He comes over automatically siding with the security guy. He asks what is going on, before security can answer, I say, "He says my luggage is unattended because I am a disabled man and can't supervise my own luggage."

Pilot looks skeptical and security man says, "He doesn't understand that luggage must be attended at all times."

Mr. Pilot's face begins to show both horror and outrage, he looks at me, "I am so sorry sir, really really sorry ..."

The security guard is lead a few feet away and they have heated words, I keep hearing about 'unattended luggage' ... finally security leaves and the pilot offers me more apology. I just thank him for his help.

I'm home now and still shocked, this blog begins what I'm sure is going to be an interesting correspondance with the airport.

Wednesday, March 25, 2009


I'm writing this blog on the morning of my last day in Fresno. When we flew down and stayed at a hotel in San Francisco after the flight, the computer didn't work in the room. I thought I'd write my 'tomorrow' blog today. Right now Joe is rushing around the room getting us packed for the trip back home. After overnighting tonight we'll be at the airport before first sparrow's fart.

There are still two sessions to be done today before we point the car towards the city by the bay, both of them are for self advocates and both of them are on abuse prevention. The Fresno Area Down Syndrome Society, our hosts in the person of Denise, planned a wonderful trip. For two and a half days I did training for staff and parents. The last two days were kept exclusively for self advoctes.

Last night another 50 showed up for a session and they were a very active and funny group. The morning group had been fairly quiet and took a lot of work to get going, the evening group were much more participatory. At one point someone cracked a joke and Joe lost control. He just stood in front of the audience and laughed. He was supposed to be doing something but he couldn't do it. Tears streamed down his face, everyone in the room got the joke and for a few minutes we all howled. Afterwards Joe said that he thought he'd sprained his ribs from laughing so hard.

After we are done there will have been juat over 200 people with disabilities who have attended our classes on abuse prevention. They will have learned how and when to say 'no'. They will have learned about boundaries. They will have learned about touch. And they will have learned it in an atmosphere of fun and trust. I love these workshops, I love the challenge of them. But what I really love is how the audience of people with disabilities, as a general rule, 'will you well' as an instructor. They are people of big hearts and gentle egos.

I am truly honoured to have had this opportuntity. Truly thankful to be reminded about what's important. Now it's time for home.

Tuesday, March 24, 2009


She's a beautiful 10 years old. Thick curly black hair frames an impish face transitioning between little girl and young woman. I know her mother, and indeed her whole family, is working to teach her boundaries. Little girl close up hugs are now for family alone. She may really like those who care for her, but it's time to show affection differently.

She is standing right beside a very handsome Latino man barely 10 years her senior. They've known each other for a long time, she desperately wants to hug him, you can see it. He smiles down at her, she grins up at him. Small for her age, he seems like a giant beside her. He knows that the rules have changed as she has changed. She only sort of understands why things are different. She leans towards him as if she was resting against the 'bubble' that is his personal space.

I'm moments away from teaching a group of 50 people with disabilities about abuse prevention. I'm inspired by this moment of wonderful parenting. I'm inspired by a little girl who is learning, right on time, right on schedule, how to be a young woman. I'm inspired by a young man who is careful to show that he still cares, but does it in a way that keeps her safe.

It's possible ... really possible ... for little girls with Down Syndrome to grow into healthy adulthood. All they need is guidance. Like all little girls, in all families. For a moment I believe that the world I want to live in is possible.

Monday, March 23, 2009

A Late Realization

"Dave! Dave Hingsburger!!!"

We had popped into the Whole Foods Market here in Fresno to pick up some things for Sunday dinner. Our intention was to be 'in and out' - I wanted to roll around and look, Joe was going to dash to the various parts of the store which stocked our needs. In truth, this is how Joe prefers to shop. Me, I'm a wanderer, an 'oh, look at that' shopper. This way I wasn't in his way, he wasn't in mine. Good trade. Then I heard my name being called.

"Dave, over here ..." I followed the sound of the voice and saw a woman of about my age who looked vaguely familiar. She was standing next to a cart picking through the bread. I rolled over with a question in my eyes, "Who are you?" At first I wondered if she was one of the people who had heard me speak over the last few days, but she was a tad old to fit into that group.

"You don't remember me do you?" I looked closely, I knew the face, I was sure of that. Even the voice reminded me of someone. Oh, my heavens, in an instant I knew. It was someone I had gone to school with years and years ago. She had the same huge smile and magnificent laugh. It would have been a reach to call us anything more than acquaintences, but when you run into someone from the dark recess of the past, the coincidence of meeting in the same place at the same time, heightens the sense of relationship.

Turns out she and her husband were there on vacation, they'd retired a few years back, and they stopped in Fresno for a day to visit someone they'd met in Vegas. She pointed proudly out to a RV in the parking lot and announced it was 'all the home they need'. I told her that I was here working, doing a series of training. Her face slowly changed as I spoke and then she said, "I'd heard what you were doing, I once even googled your name because I just couldn't believe it."

Joe came over and found me, I introduced him, he saw that we were chatting, "Do you want me to just take this through the line and give you two more time?" We agreed that would be nice. She then went on about how nice Joe seemed and how everyone knew when I was younger that I was "that way" she was pleased that I'd met someone nice. Throughout the conversation there was a genuineness to the warmth she showed me that surprised me. I didn't expect it, I welcomed it, but I wouldn't have predicted it.

"You don't seem at all bitter about those old days," she said suddenly, after we'd laughed about a memory of someone we both remembered fondly.


"Well, none of us gave you much of a chance back then, we were all pretty cruel," she said it like an apology that she'd waited a long time to give.

"I don't dwell on those days much, maybe in my darker moments, but I don't have them often," I said, realizing it was true.

We talked a little longer and when Joe came back we were both waiting for him. The meet had happened, we'd run out of things to catch up on.

I was quiet in the car and I could feel Joe glancing over at me every now and then. I reassured him I was OK. In fact it was all OK. I'm in the life I'm in because I lived the life I did. And I'm fortunate that, for me, that's a blessing, not a curse.

Sunday, March 22, 2009

Ah, Man ...


I worked yesterday doing a morning presentation for parents of kids with disabilities. It was a wild few hours because I tried to fit a presentation in amongst a thousand questions. I love that kind of energy. I love the way one question becomes another direction. The time flew by and suddenly, the hall was empty and Joe was quietly packing books away.

We drove away, both tired, talking about mundane, real life things. What to have for supper. When to book WheelTrans for the trip home. Life on the road can seem unreal and artificial - topics that force us to remember that we have another life where we are teathered to the ground by the realities of responsibilities, relationships and routine are comforting.

After a quiet cup of tea (a standard for me after a talk) and the shopping done, we went to the hotel to read and watch television. We like to stay at Residence Inn hotels because we get a little kitchen where we can make our own meals. This hotel has a separate bedroom off a small front room so it's quite homey.

But last night, something kept me awake all night. Thoughts came unbidden, worries followed thereafter, after the first toss, I knew to expect turning. Now I'm up and into a day that's going to be listless.

What with cut curbs and wide doors, how come they can't ramp sleep?

Saturday, March 21, 2009

Water Anyone?

They were having an earnest discussion. They were probably in first or second year university, a time when everything seems important and when few things actually are. Each had hair that was studiously messy, one was artfully unshaven, the other had one of those thatches of hair under the lip. Their topic was about how one's view of life affected one's experience of life. Me, I was just at the next table having a tea and resting from a day's presentation.

I had talked, all day, about abuse and abuse prevention as it relates to people with intellectual disabilities. It's the hardest day I do, it's emotionally the most draining, and I always need to go and sit quiet and refresh my spirit. I find a cup of tea, exactly the right tea mind, usually does that for me. There was only one table that I could pull in at as the rest of the place was either filled or inaccessible.

The two student philosophers were off to my left, they noticed me but barely as I settled down for tea. I listened sort of casually as they talked. I had this conversation too when I was younger, my minister had it again last weekend, it doesn't really inspire me to much. Then one of them put a glass of water in the middle of the table and they began with the 'half full, half empty' debate.

I think one of them saw me give a small smile when I saw the 'prop' for their discussion. I wasn't mocking them, not really, I simply thought it was cute. Joe and I used to have passionate debates about things like that when we were in university. Those debates would make us giggle now but boy did we flap our jaws about stuff back then.

Finally, the one with the arty hair and the sculpted scruff called me into their conversation. They knew I'd been listening so figured I wouldn't mind. They explained their contention about life and attitude and then asked me as a 'disabled man' how I saw the glass of water.

"You want my opinion as a disabled guy?"

"Well, yes, but we don't mean to offend." I got that.

"No, no, I'm not offended, I am a disabled guy and my disability does give me a different view than others on some things, I get that, you get that too, that's cool."

"About the glass?"

"Well, speaking as a disabled guy I'd advise you to realize it's just a glass of frigging water and it doesn't matter one whit if it's partly empty or nearly full. It's just water."

"But," one sputtered, "it represents ..."

"It represents," I interupted, "a glass of water. What I've learned as a disabled guy is that what's real in this world is what's worth worrying about. Allegory and symbolism is fine ... but what's real is attitude, prejudice, access, fairness, equality, justice ... I don't care if the glass of water is half full unless I can get to it, I don't care if it's half full if I can't afford it, I don't care if it's half full if it's placed out of reach, I don't care if it's half full if I'm thirsty, but the nurse won't bring it."

"Half the restaurant this town have steps in front of them, another quarter have narrow aisles most of the rest have inaccessible bathrooms, I'd be pleased to worry about the water in their glasses ... but while you're priveliged butt is in the chair worried about it, the rest of us are outside looking in at it. All it is is water that you can debate about and we can't drink."

There was a pause.

"So what do you think?" I asked.

But they'd lost the desire to talk.

Friday, March 20, 2009

On The Road Grinning

You know what is a real turn on.


I just finished the first of 5 days lectures here in Fresno to an audience of people wanting to become relationship (sex education) trainers. They came from far afield and the number was kept low so that there would be an intimate feeling and opportunties for questions.

Every time I lecture I have to deal with nerves, and it was particularly true with this one. I hadn't given a day long lecture like this one for awhile and I get myself all wound up in 'visions of failure' ... But from the moment I started the group responded with interest.

Real interest.

Real excitement.

Real enthusiasm.

As the day went on one almost felt a difference being made. Like change was cooking in each mind ... wow. Double Wow.

They spurred me on and I found myself responding passioantely to questions and wanting to give them the best day that I could.

I'm back on the road.

I'm back.

(I promised Rose I would mention to those in Southern Ontario that I'm giving a lecture on heirarchy, power and communication ... on a week Friday. For flyers contact rcastronovo@vitacls.org)

Thursday, March 19, 2009





Riding through the beautiful green countryside from San Fran to Fresno we flipped through various radio stations. On one there was the story of that guy overseas who barracaded his daughter in the basement fathering upteen children by her through years and years of rape and abuse. On the other was a report about that singer guy who beat up his girlfriend - also a singer - and is up on charges for his behaviour. Two horrible situations. Two situations of violence in relationships. Two examples of power gone mad.

But ...

BUT ...


In both reports the men came forward as being victimized when they were younger. I felt like I was supposed to rush up to them and cradle their nasty little heads and say, 'Ah poor dear, all is forgiven.'

WTF is wrong with people?

Jeffery Dahlmer, remember everyone favourite gourmand, claimed that he too was abused as a kid. Oh, well, then Jeff, we'll forgive a little human on your breath.

How did we all become so frigging shallow?

Why do we let perpetrators of abuse get away with this shit?

When did the media become snivelling little reporters of fiction?

Let's get something straight. You may have had the childhood from hell. You may have had the Devil as a Dad and Medusa as a Mom ... yeah, tough draw. But, should you ever hit someone, purposely hurt someone, wound, bruise or cause pain to another.









Don't go all 'mommy made me do it' or 'daddy was a bad man' ... even if it were true (and I don't believe it half the time) YOU STILL DID IT. Jeffery ate human flesh - no one else.

Take responsiblity.

I do not believe that we are served by journalists who are offered bullshit and report on flowers.

I do not believe that people are doomed by their past ... they may be challenged by them, they may be hampered by them, but they are not doomed by them. Thousands upon thousands of boys and girls suffer abuse ...

without eating their neighbours.

without raping their daughters in dungeous.

withour beathing the shit out of their girlfriends.

Millions and millions rise above violence and embrace victory. Don't go for pity when you've shown none yourselves.



Wednesday, March 18, 2009

I'm Down With It

What a day for a daydream.

What a day for a daydreaming boy ...

Again, nothing spectacular to write about. We were up early to catch Wheeltrans to the airport for our flight to California. It was a balmy morning with only a wee bit of brisk in the air, so we sat outside with our luggage and waited for the bus. It arrived about 5 minutes early and the driver was a charming and gentle woman who got us in carefully and then we were off. As she deposited us on the sidewalk outside the terminal both Joe and I looked at each other and said at the same time, "What a lovely woman."

As it happened we were dropped off a few doors down from the 'official' disabled drop off because it was jam-packed with taxis - thus we were just straight across from the Air Canada Special Assistance check in booth. The woman there was terrifically helpful and the guy who came to get me was a little older than us, a great wit and we all laughed right through the security gates. There I was picked up by another staffer who zoomed me along to the gate.

Again, everyone was lovely.

On the plane they organized things so that Joe and I had a seat between us and our flight was long but comfortable. Arriving a tiny woman was there with a wheelchair to get me to the luggage and then up to the rental car. She and Joe worked it out and then we were getting the car from a laughing woman who thought everything that we said was comic genius.

Hungry, we stopped at the nearest IHOP and were served by a woman who's name tagged anounced her as a Suzie. The name fit and she seemed to be on top of the world enjoying her work taking orders and bringing food. Both Joe and I realized that we weren't really tired from the travel. It was as if we were buoyed up by everyone else's spirit.

Like everyone in the world decided that it was a 'be kind to others' day. I found my self smiling at everyone, being cheery with a haggard hotel clerk, understanding with a problem with the room. Joe decided that he wanted to walk down to the ocean, I decided that I didn't. We both had a lovely hour, together but apart, apart but together.

Even this morning, after dealing with a computer connection that didn't work in my room. A late blog. A poor sleep. I'm still in a wonderfully happy mood.

Because attitude is contageous. I've come down with an upbeat mood. Caught from a bunch of people who were just happy to be alive, happy to do what they were doing ...

So I hope you catch what I've got ...

And I hope you pass it along.

Tuesday, March 17, 2009

Where There's a Will ...

Well, that's all over.

Because of a huge protest here in the center of the city, we left the car behind when we went to the lawyers. I was hesitant to go so far in the power chair but Joe was absolutely sure that Henry was up to the task. We had spent some time redrafting our wills and knew it was time to get them up to date. Further, we've been investigating what to do with our earthly remains - and have settled on a columbarium (a word we did not know until a few days ago) ... all that remained was the signing of the will.

I was a little unnerved on the way over to the lawyer. I hesitate to admit why. But, in an effort to HONESTLY document life as a disabled guy ... here goes nothing. Joe used to work for this guy many years ago. As one of the first male legal secretaries in the city, he would answer the phone in lovely rounded tones, 'Law Office'. Here I was Joe's partner, not the other way around. That was OK, of course, but as I've always been a big guy - I always felt that they were disapproving of Joe wasting his time with me.

Over time as my career emerged and my work was recognized that changed somewhat. Even so the sour taste of 'not good enough' and 'not hot enough' remains in my mouth. Now I was going over to see the lawyer, who I haven't seen in 15 years, as a fat DISABLED guy. I asked Joe, somewhat nervously, 'Does he know I'm in a wheelchair now?'

Disability pride goes only so far - there is still the interpersonal realities of human nature and human judgements. I didn't want this guy to think that Joe had really backed the wrong horse. So since I couldn't look hot, I thought I'd try to stay above clutz and dolt (on some days a real challenge) and just get through it.

Turns out that it was a very pleasant interaction, he wasn't phased by the chair and we ended up having a lively conversation about - ethics. It was kind of fun, we were all relaxed. Turns out, I guess, we're all older and maybe just a little less shallow than we were when we were boys. I mentally castigated myself for my silliness on my way over.

But it still reminded me how much I need Joe to still be proud of me.

After nearly 40 years, I guess that's kind of cool.

All that, and the will is signed, Henry made it there and back ... and we're off to a week long series of lectures in California.

Life goes on ...

Monday, March 16, 2009


It was a small moment, but a lovely one. We made our way over to where the St. Patrick Day parade made the turn from Bloor to head south on Yonge. There were hundreds of people lining the street and there was an atmosphere of fun and gaiety. (Shut up.) Even though I do not have a drop of Irish blood in me - I felt like all those bowls of Lucky Charms as a child made up for that fact.

Sitting in the power chair I was able to relax and watch the parade go by. I heard them before I saw them. They were playing as they came around the corner. Faint strains of 'Danny Boy' wafted down the street. Then the band came round the corner. They were a Phillipine Cultural Marching Band and they were playing a stirring version of the Irish classic.

They got a huge cheer from those around me. Every single person knew a few words of the song and happily sang along. Across from me, on the other side of the street, were people from a variety of countries and every one was wearing green and many had painted shamrocks on their cheeks.

The Guiness float got a huge cheer and the 'Hillbilly Girls' got a warm but confused reception. The firefighters came by and some of the men, oddly, set hearts aflame. The parade ended when St. Patrick made his way by, greeted by a huge cheer.

Moments of cultural diversity are rare and precious.

Moments of spiritual union in communities often rife with conflict are to be savoured.

It is in these moments that I have one of my most profound thoughts, 'Let's all go get a beer.'

Sunday, March 15, 2009

In Cluded

It was time for a big adventure. We've had Henry, the power chair, for quite a while now and I've begun to get the hang of how he handles. The driving isn't difficult, negotiating pavement that's been ravaged by winter is the challenge. As the weather has improved we've been going farther and farther afield. My goal has been to go down to the Eaton Center on the subway. As soon as I found out that the station near us is accessible, the idea formed in my head.

We crossed over Yonge Street and soon found ourselves entering the station. There is a long, narrow, switch-back ramp that needs to be negotiated. I sat on top, looking at it, thinking about giving up. But I know myself, if I give up the first time, I never try again. So down I went. Joe was chatting with me and I had to ask him to just be quiet and let me concentrate on driving down the ramp.

OK, now we're in the station. We make our way past the ticket taker and I park on the platform. I can't even look at the edge of the platform without feeling like I'm going to fall over. I am both blessed and cursed with a wild imagination. I focus simply on the experience of being in a wheelchair, being on a subway platform, experiencing universal accessiblity.

The train arrives and as it comes to a stop, I have to move my chair to get into position to go through the doors. But then I notice. The gap between car and platform is several inches wide. Easy for people to step over but, oh my God, to drive over. I look up at Joe who gives me a thumbs up and says, 'Just shoot that sucker over and into the car.'

Turns out to be good advice.

I gunned the wheelchair and popped onto the subway car. As soon as I parked I got the giggles. I felt like I had acheived some incredible feat. OK, no pause now. I had to turn the chair around so that I could drive out. My chair backs up painfully slowly and there's no way I want to back out of the subway car. That accomplished I could enjoy the ride.

I look around and see 'subway faces' ... everyone making sure that their face said 'don't look at me, don't talk to me, don't acknowledge me, and please just don't be weird - OK' ... if they noticed the miracle of inclusion, they didn't show it.

And that's precisely the way I wanted it.

Saturday, March 14, 2009


When the boss says, "I have a favour to ask you," it's best to clear your schedule. A couple days ago Manuela called and told me that she needed me to write an article about someone who had moved home from the institution to the community. I asked when she needed it by. There was a pause and I said, 'now'. She agreed that 'now' was good. I asked her who she'd like me to feature but before she could answer she was called away back to her meeting.

It wasn't that I needed to know who was doing well, um, they all are. I just wanted to know who would make a good story. I settled on a guy who had come from a behaviour ward with reputationitis and a file that would outweigh ...well, me. He moved amid fear, amid predictions of failure, amid determination to succeed. Talk about out of the backwards and onto the streets. He's done spectacularly well, rising to every challenge, raising eyebrows and expectations at the same time. He's a great story.

He's the reason I got really pissed off today.

I've had a bajillion people writing to tell me about the travesty in Texas wherein institution staff have been staging Fight Club fights amongst residents with significant disabilities. Forced to fight, forced to brutalize each other, forced to perform for their keepers, people with disabilities existed for the purpose of employement, entertainment and exploitation. I read all the email urging me to write. I had nothing to say. You can't editorialize a story that editorializes itself. Everyone, it seems, got it. The news media got it. The law makers got it. The politicians got it. Nothing to say.


We didn't get it.


What the hell happened to us?

Today I read that advocates for people with disabilities say that there should be suspended admissions to the state facilities until they go 30 days without a complaint of abuse. Really? That's what they want? What kind of advocate is that?

Let's get something straight. What happened was horrific, abusive, inhuman. The people that did this should be punished. But this is not grounds for 'cleaning up' insititutions, it is not grounds for closer state supervision, nor is it grounds for fresh paint, new floors and clean windows.

This is grounds for something more radical. It is grounds for asking the question again. Why are there any institutions left? Why are there citizens locked away from society? Why do people still live at the margins? Why aren't people home?

Every day that a person lives in an instititution their civil liberties are stripped from them. Every day that a person lives in an institution their rights to access and opportunity are destroyed. Every day that a person lives in an institution the concepts of 'freedom,' 'justice,' and 'liberty' are in jeopardy. When one citizen can be convicted of the crime of difference all citizens are at risk. When one citizen is deemed worthy of life 'outside' those 'inside' live in insecurity. When one citizen is considered worth less, those worth more measure their value daily. It is impossible to go 30 days without abuse when every day kept apart, even kindly treated, is abuse.

I have seen the captive, freed.

I have seen the jailed, liberated.

I have seen the outcast, included.

This has given me a taste of heaven. This has given me eyes - that see, really see, all. This has given me an understanding of the length, and depth, and width, and texture, and colour, and taste, and smell of diversity. I have seen what genes do to the human body, I have seen the soul live in different eyes.

We do not demand 30 days of quality care. We do not even demand hallways full of kind staff personally chosen by a loving God. We do not demand better food, pretty wallpaper, fabric softened sheets.

We demand simply this ...


Build capacity in the community.


Construct places of welcome.


Create freedom.


Not 30 days from now.


Friday, March 13, 2009


The loneliness and isolation of people with intellectual disabilities outrages me. I believe that much of this is caused by the application of philosophical principles developed by non-disabled people for the betterment of the lives of disabled people. While I totally get the concepts of integration and inclusion, I also totally get the idea of 'sameness' and 'strength in numbers.' Those who's beliefs of 'total integration and no segregation' have led to people being disallowed opportuntities to be with others with disabilities have inflicted prejudice into social choice. Telling people with disabilities that people with disabilities are unworthy friends is a dangerous, dangerous thing. Let's add self hatred and self loathing to social isolation and call it a life.

(shut up Dave you've beat this drum to death)

OK, so remember yesterday I wrote about that young guy, all alone. About my breaking heart. Well, I thought about him the whole way down to Saint Chatharines. I had been booked to keynote a self advocate conference and was looking forward to just being there, being in a room of people with disabilities, being around that kind of energy and fun.

I rolled into the room a little early. I headline these gigs but Joe and I teach people with disabilites as a team. There is much to prepare. They came in, slowly at first but as the start time approached the room filled quickly with those arriving. There was such a buzz in the room as people saw friends and gathered to chat, as acquaintences were reunited, as relationships were struck up.

While talking with one of the facilitators, I noticed a woman with Down Syndrome using her cell phone to take a photo of a woman in a wheelchair. As she snapped that picture, I snapped a picture in my head. It's an image that I'm coming back to over and over again. It's an image that I'll use as an antidote for the bitter pill of isolation. There is hope. There is a way.

There were 50 people with disabilities in that room. There were 50 people with a social network. Sure they all live in that vast world outside. Sure they all live lives integrated and included, none of them want to give that up. But they all have these moments, moments when they get together to learn, to laugh, to visit. Moments were they can refuel.

At Vita there is a gay person who is not out to family or other staff. Someone who is terrified of being 'found out' ... someone who thinks that I am the bravest person alive for being out in human services. OK, I guess. Every now and then this person will pop into my office (as many people do) close the door and say, 'I just need to breath gay air for just a minute.' Then they will slip out again. The first time this was done I laughed. But I get it. In all sorts of ways.

At the conference in Saint Catherines only one of the self advocates was in a wheelchair. All the rest were your regular walkie talkies. I noticed her when she came in, she noticed me right away. When it was all over she came over to talk. I told her that it was nice to have someone else in the room in a wheelchair. She said, 'I noticed you too, right away, it's like a breath of fresh air.'

It is. It really is.

There is no freedom if there is no breeze.

Thursday, March 12, 2009

The Hidden Crime

I heard it distinctly, and I think he did too, the moment when my heart cracked open. On days when I do consultations with agencies, I am envariably exhausted when done. Everything is so intense.

In this case a young boy came in. I know he'd consider himself a man but if you are under twenty - to me you are still not quite 'growed up'. He seemed so small, so little, he took his seat knowing what was going to happen. That the people in the room were going to ask questions, listen to answers, that we were going to poke and prod through his mind. I watched him ready himself. He seemed to me, from my vantage point of nearly 60 years, to be a little boy who had a big, big problem.

We do what we do. We do exactly as he thought we would. Underneath his piercings, underneath his teen swagger, there unquestionably lives a frightened little boy. He knows what he's done is wrong, really wrong. He knows he is in big trouble. He never wants to be 'here' again in his life, never wants to hurts someone, never wants to have to talk about what his hands did. Never again. But it is the assessment dance, we lead, he follows, we ask, he answers, we show pictures, he points to the right one.

At one point he is asked the question; "If you had an uncomfortable feeling, who would you talk to?"

He looked at us seriously, as he had throughout, he answered honestly, "No one. I have no one."


There was such sadness in his eyes. He was alone in the world. True, he had care providers, he had family, all who cared - but none who'd listen. Not after what he'd done. Not after the trouble he caused. Now he was simply alone in the world.

Soon after this answer we called a close to the meeting. We had more to ask, but he had little else to give. He had been honest, honesty takes energy, and such he was exhausted. He got up nad shook our hands, thanked us for wanting to help him. And, he was gone.

We, the team, talked briefly after he left. "Did you hear ..." I was about to ask. After 3 hours of questioning, 3 hours of answers to difficult questions, my co-workers both said, "He's alone."

Loneliness and isolation are so often epidemic in the lives of people with disabilities. I wonder how many mistakes, missteps, and misbehaviours are made to simply feel less alone. I wonder what that desperation does.

"No one."

"How did we get here with him? How do we bring a young person through a supported and planned and programmed life, and find him here alone? How can we teach him so much and give him so little? What is our responsiblity in crafting loneliness and fostering isolation? We must be targetting it, it's so often the end result of years of programming and support.

I'm beginning to think that an assessment needs to be done. Questions asked. Tests completed. On a system who seems to keep churning out young men, young women, who come through integration without any rubbing off. Who come through inclusion without it ever taking hold. Who come through a crowded life and end up, at 17 alone.

His crime was caught.

Ours gets a pass.

Wednesday, March 11, 2009

Mr. Spock and Me

I wonder if any of you readers are Star Trek fans. While I wouldn't say we are Trekkies, we both did like pretty much all versions of the show (with the exception of Deep Space 9 or 8 or 42 or whatever it was). In the origninal series there was an episode where the crew arrived on a mining planet where there were these burrowing aliens that looked like they were scabby marshmallows. They had killed one of the miners and Kirk and crew were there to defend fellow humans. One of the creatures is shot and when it is cornered in order to communicate with it Spock does a Vulcan mind meld (Spock only touched aliens that Kirk didn't want to bed.) When their minds meet Spock calls out in a hollow voice ....



P. A. I. N.

Well that's kind of what old Spock would hear if he did that Voodoo thing he do to me. We are on a road trip consulting for two days and speaking at a conference for one day. Joe went to pick up the rental car and even though we always use this company, even though we have specified that one of the passengers has a disability and uses a wheelchair (that would be me for those not keeping up) they keep giving us inappropriate cars. This time it was the Nitro. That frigging car is so high up that it is daunting to get into and horrible for lifting the chair in. On my first attempt I sprained my knee. Badly.

All the way up to our first stop I rocked with pain. I was concerned about what I'd do when I got there because, man I was in pain. I kept saying to Joe that I wouldn't be able to get into the building. I wouldn't be able to make it because I wouldn't be able to weight bear on my leg. So we called the company, arranged to drop this one off and pick up another ... but first Joe had to get me to work and then he could go exchange cars.

We got there and, I needn't have worried. In all that pain I forgot.

I have a wheelchair.

Thank God.



Tuesday, March 10, 2009

Book Club: The Sequel

Well, it's that time again, Chewing the Fat's Disability Book Club. I propose that we read Zoo Station by David Downing, a book which I just finished and is a rip roaring read. It, like our last book by Mary Doria Russell's Thread of Grace, is set in World War II and deals with disability history as a major plot point. I don't like spoilers so I'll just talk a wee bit about the writing.

Many historical novels bog down because the author has a need to throw every bit of research into the text. Downing manages amazing historical accuracy (there were things here I didn't know, I'd stop and go to the computer to find out if what I was reading was historically accurate, it always was) but does not sacrifice pacing along the way. In fact this book is breathless in it's pacing, racing you along from person to person and scene to scene.

There is much to discuss here that is of interest to the disability community. While there is only one minor character with a disability - disability is a theme. The parents of a child with a disability are featured more prominently and give us a glimpse into a dark, dark time.

I flat out loved this book. It came as a surprise. I had purchased it because Joe is a huge fan of WW II literature and I read a review of the book (which oddly didn't mention the disability angle) and picked it up. As I read along I was startled after the first brief hint of disability history grew into something much more.

This is an important book, true, but it's a great read too. I hope a lot of you sign up to read along. I'm figuring that I'll wait to see if we get 6 or more and then I'll set a date.

The book is available in soft cover.

How the book club works. We all read the book and on a particular, agreed upon, day one of two things happens. For those with blogs and who wish to, they write a blog about the book and guide us to their blog via the comment section on Chewing the Fat. Others without blogs or who wish to only comment, feedback is simply left here on fat's comment section. I will, of course, blog about the book that day as well so everyone will know exactly where to comment and where to read about others reactions to the book.

Last year we were fortunate to have the author drop in with a comment. I've not been able to find a contact for this author yet, but it's still early.

Monday, March 09, 2009

One More Question: Waiting for the Call, part 3

I didn't ask if I could record the conversation on my blog, so I won't. You don't want people in uniforms to get angry with you. Let's just say that I had a visit with two people who were investigating the abuse of a senior by a paid 'aide'. They are taking the crime very seriously and they took me very seriously as a witness. I was able to describe what I saw vividly, they seemed pleased.

On they way out the 'Woman in Blue' said, "One more question, why did your note to her tell her to call the police not the agency. I would think that most people would have thought of us second, if they thought of us at all."

I said, "You'd both better sit down."

For the next 20 minutes I talked about the work I've been doing with Vita Community Living Services. The changes that we are making in an organized and thoughtful effort to become abuse free - and if not abuse free, to become an organization that is actively hostile towards abuse. While we have made many changes towards that effort, what we have done hangs on our abuse reporting policy. Any front line staff who witness abuse, or has abuse reported to them needs to understand that they have witnessed a crime or have had a crime reported to them. The organization that investigates crime is the police. Any organization that investigates itself is fraudulent in their responsibility to safety, therefore staff report the crime to the police FIRST and to the agency second. Staff are trained to leave off questioning and leave off investigation, their job is support. SUPPORT. Not investigation.

Criminals are caught by police and convicted by courts. There is no room for agency politics, agency fears, agency misrepresentation. None.

I knew, I just knew, if that old lady had called the agency nothing would happen, or worse, she'd be in more danger than ever. You reach "out" for help. You need the protection of an "outsider" when the crime is committed by an "insider" ... this is a simple concept. Agencies that do not have the courage to be open I believe need someone to come along with the jaws of life and pry them open. Agencies that have manangement without the will to be open I believe need to have the top pruned so that healthy growth within can occur.

Cop eyes are hard eyes. But the ones that looked at me softened for a moment when she said, "You realize, you may have saved her life."

I do.

That was my intent.

Sunday, March 08, 2009

5 minutes or more

I didn't know her, had never met her, had never even seen her before, but nonetheless my emotional response to her was way, way, WAY out of proportion. We had gone to see Madame Butterfly (you really are a bastard Pinkerton) which was streamed live from the Met into movie theatres. It had been surprisingly hard to get seats. When we got our tickets last January, there had been only one theatre in Toronto that still had space, all else was sold out.

We arrived very early because the crowd for these shows is a bit older and there are many with walkers and in wheelchairs. Theatres usually have only two seats where someone in a wheelchair can sit next to the person they are with. We get there early to claim one of them.

Soon after we were in and settled, she came in. Oh. My. God. If there was anything to the joke about the 'fashion challenged' ... she'd be profoundly so. I'm not good at describing things but here goes. She wore very tight leopard print pants, they were orange and the leopard markings were small and abundant. Her top was another shade of orange and made from a different leopard. The two did not match, they made the eye vomit from confusion. On top of it all she wore a Scottish plaid tam. As one gay man said, fron a row behind, 'It makes you believe that there should be a ban even on fictional fur' and his companion, 'Oh, dear, Braveheart Goes Tarzan.' So I wasn't alone in my reaction.

But it wasn't her clothing that got me, well not completely. Everyone noticed her. Everyone. Because she wanted to be noticed. You could tell that she thought she looked hot. So she paraded back and forth in front of us like, well, she was a leopard on the prowl. She glaced at the crowd like she wanted to be mounted right there, right now. And, AND, like she knew that every man in the room wanted her. She'd parade, stop, pose. Parade, stop, pose. She had more confidence that RuPaul on steroids.

And it irritated the hell out of me.



R. E. A. L. L. Y.

She was there every intermission. Every moment she could. The top leopard did battle with the bottom leopard as she walked. The plaid on the tam, which she wore rakishly at an angle, looked like it wanted to be pasley, or polka dots, anything but plaid. I felt sorry for the entire country of Scotland. I mentioned her to Joe maybe once too often and he said something approaching, 'Dear, you're becoming obsessed, did you bring your meds?' Even the gay guys behind us had lost interest in her and were disecting the opera like they were musical surgeons. Please!

On the way home Joe was yammering on about the opera and the staging and the sets and the costumes, I nodded along because that's what you do when you love someone. But I was thinking about the woman in the pants with the tam and her parading. Why on earth did she bug me so much? I'm a little egocentric and find myself and my reactions fascinating - and I wanted to dig a bit into the old subconcious to find out if I'd had a brutish aunt in leopardskin, suffered at the hands of a teacher in tartan ... but no, I have no bad encounters with cats, wild or otherwise.

Realizing it wasn't the clothing that got me, I shifted focus. No, it was the sheer freaking confidence with which she walked, it was the joy she had in simply feeling like a beautiful woman on display, it was the surety with which she presented herself to the world. That's what irked me. It didn't matter that her clothing didn't match her confidence, it was that her confidence shone through everything.

I was freaking jealous. That's what was going on. I've never felt that way in my entire life. I spend all my time trying to simply convince myself that I'm a step above a pile of shit. I work at building the emotional energy to believe that I deserve the breath I take. I am burdened with a depressive nature, I am hamstrung by a lack of self worth. You'd never know it unless you knew me well, saw me in my private moments, but I'm a shy child tired of fighting demons given birth a millenium ago. That shy child looked out and saw the sheer audacity of self worth, the sheer frigging courage of self esteem, the sheer - oh hell I'm going to say it - 'fuck you' of a proudful persona.

I envied her.

I was jealous of her.

I'd love to have even 5 minutes of feeling like she felt. Like I'd drunk a bit of vampire blood and could command the night. Like I'd been personally crafted by a talented God.

5 minutes.

Just 5 minutes.

Is that really too much to ask?

Saturday, March 07, 2009


It was just a little outing but in my mind it was so much more. Joe wasn't feeling well yesterday and we had planned on going out on a 'date' ... just a jaunt over to Yonge Street to have a tea and people watch. But when he got up yesterday his voice had deepened and blurred and I knew he wasn't well. I took Wheetrans to work and Joe went back to bed.

When I got home Joe was all set to go out and I simply sent him back to bed. We have plans for the weekend that I knew he was looking forward to. I told Joe that I'd head out to pick up a few things in my power wheelchair. I left the apartment and was on my own down the hallway, leaving the building I headed over to the grocery store, I had a bag over my arm for shopping and a grin on my face.


In the mall I first went for a tea and sat sipping it while watching people stroll by. I kept glancing over to the chair where Joe usually sits to see if somehow he'd magically appeared. I don't much go out without Joe and his absence was not simply noticed, it was distrubing. I didn't finish my tea.

I finished up the shopping and headed straight back home. I had a little trouble negotiating the elevators all on my own. Like a comedy skit I'd push the button, back up to wait, but every time it came, the doors were just slightly too quick. Finally I had to ask someone for assistance.

As I rolled home, I thought about all the imagining I've done over the past year or two about the independance that the chair would give me. The ability to go out on my own. Do my own thing. Then I had an odd realization. Before my disability Joe and I did pretty much everything together too. The only difference was that I moved under my own steam not needing his assistance. We walked together but we were always together.

Somehow I had misremembered my life before. I had made it something different than it was in my mind. I had coloured my past with crayons of a different hue. Me before was precisely the same as me after. I hadn't altered much. I'd made much of small differences and conjured fantastical big differences - how odd. I'd really remembered and pictured, vividly, things that simply weren't true.

I wonder how much of my past is plagued with remembering wrongly, remembering selectively, or remembering wishfully? I wonder how many people, destroy the enjoyment of present circumstances with memories of a past full of false possibilities.

Home again. Shopping done. Something I thought would be a mammoth acheivement turned out just to be a lonely chore. Hmmmmm. And Hmmmmmm, again.

Friday, March 06, 2009

A Blog in 5 Acts

Act One:

A few days ago Andrea, a regular fat reader and commentor, brought to my attention a protest on facebook against the use of the word 'retard'. Facebook has a policy against hate speech for all but disabilities it seems. This protest was to get Facebook to consider hate as hate and people with disabilities as equals. I am not a Facebook person but I brought it to my boss Manuela Dalla Nora. It shocked me to learn that Manuela had a Facebook account (thought it is a bit ... um ... dusty). We agreed that Vita has a lot of young staff and that many of them would have a face book account. Shortly thereafter Manuela sent this out to all Vita staff.

Act Two:

FaceBook, Bigotry and Fighting Back

It may surprise all of you to know that I have a facebook account, I know that some of you see any of us who are over 40 (or 50) as dinosaurs when it comes to technology. (Okay, I’ll admit there is almost nothing on my site and I rarely use it – logged on only to see what my son was up to!). However, I have recently become aware of the sheer volume of facebook pages that exist for the sole purpose of mocking and ridiculing people with intellectual disabilities. You will remember a few weeks ago we sent you some cards to use when you heard people use words like ‘Retard’ or expressions like ‘That’s so Retarded!’. We don’t set little goals here at Vita, we set great big ones. We want to end the use of this kind of language. We want to make people realize that their words have the power to hurt.

Facebook has a policy of banning hate speech. The problem is they don’t classify the word ‘Retard’ in the same way as they do other words that put down other people. We want to change that. There is a way to protest … if you, too, would like to have facebook respect people with disabilities join the protest at …

http://www.facebook.com/group.php?gid=63516216741 or by simply pressing here

Here’s what they say …

Currently there are over 1000 groups on Facebook whose goal is to mock and demean people with special needs. These groups include names like RETARD HATERZ, RETARDED CLUB, I'M RETARDED, TEAM RETARD and RETARD NATION. These groups post pictures of children with Down Syndrome and Intellectual Disabilities for a laugh.

Facebook's terms of service clearly go against what they are allowing on their site "groups that attack a specific person or group of people (e.g. racist, sexist, or other hate groups) will not be tolerated. Creating such a group will result in the immediate termination of your Facebook account."

Let's see if Facebook is really willing to live up to their terms of service and stop mocking children and adults who have special needs.

Slurs and stereotypes hurt any way you look at it.

Please help us stop these hateful groups on Facebook by joining our group.

We have a mission! Help us spread the word and invite your friends to join our group.

I believe that we have collective power here at Vita and I encourage those of you who are facebook members to join. We’d like a record of Vita’s involvement, so if you choose to join in on the protest just send an email to dhingsburger@vitacls.org and say, ‘I’m in’.

Act Three:

On the same day Manuela sent out an email to ED's of similar organizations in Toronto, informing them of the protest, of Vita's participation by asking staff support and encouraging them to send out information to all their staff as well.

Act Four:

Within 2 minutes of Manuela's email to Vita staff, I began receiving 'I'm in' notes from staff around the agency. They are still coming in now.

Act Now:

If you join in as a result of Manuela's note on this blog please comment here on the blog or email me at my work address simply stating 'I'm in' and where you are from. We'd like to see what power networking has ...

Thursday, March 05, 2009

Here's The Way It Went

He sat down beside me and looked at me seriously. We were on a break from the bullying and teasing day that I was doing for some older teens and young adults. He had eyes that had seen too much hurt, his bravado and huge sense of humour could not hide those eyes. I glanced over at him and knew that it had taken a lot of courage for him to come and sit with me. I was the teacher and he was the 'cool kid' after all.

But I simply waited. I've learned to wait. I don't understand why people who work with those with intellectual disabilities are always in such a rush. Wait. Shush. Calm. Let it be ... and it will.

"I have a question for you."


"When is it OK to punch someone. Like if you've told them to stop calling you names or to stop teasing you and if they keep on. Would that be when you hit them?"

I've never had this question. In all the years that I've taught people with disabilities about bullying and teasing, this has simply never come up. I needed time to think but didn't have it. So I bought time with a question:

"Is the person doing the teasing another kid at school?"


"Is he in your class or is he one of the other kids?"

"You mean is he like me or like the other kids?" He caught me.

"Yes, that's what I mean."

"He's not like me, he's smart." I wanted to tell him that smart kids don't tease but I wasn't there to quibble. He's asked a serious question.

I decided to tell him the truth. At least truth as I see it. I'm nervous writing this because I can just imagine the mail I'm going to get. But this is what happened and this is what I said:

"I'm going to tell you the truth. The world isn't fair. It is full of people who don't like people like you and me, people who are a bit different. In movies and television you see someone who is being bullied stand up to the bully, punch him in the nose and it's all over. But that's not how the world works. People won't simply take your side. Some people will think that you are violent and he is innocent. Some people will blame you. They will say that kids like you shouldn't be in school because you will attack the regular kids. It's not fair but it's what happens. If you hit someone, no matter how much they may deserve it, it will come back on you."

He nodded slowly, understanding.

"So you need to take revenge."

His eyes snapped to mine, like he couldn't believe what he was hearing. He was interested now.

"Revenge isn't hitting him. Revenge is being better than him. Walking taller than him. Smirking at him when he teases you. Reporting the teasing calmly to teachers. Calling the police and talking to them about him - calmly. Let them see him as out of control and you as fully in control. Get him back without touching him."

"It would feel good to hit him."

"It feels better to win."

He nodded at me and began to get up. He stopped and said, "Thanks, you're OK."

"So are you."

I have run and rerun this situation in my head. I've gone a thousand different ways. From telling him that violence is never a solution to telling him to smack the bastard in the head with a bat. I've imagined avoiding the talk. I've imagined telling him that teachers all care and that no one is prejudiced. I've imagined being smarter and knowing the perfect thing to say.

But I have the conversations I have, think the thoughts that I do, and oddly, I bare them all to you.

Wednesday, March 04, 2009

Through The Rain

I don't know if it happens to others, but I recently had a bout of feeling really sorry for myself. Not specifically about having a disability, mind, but not ignoring that fact either. It just seemed that somehow I'd become irrelevant. That there was something about me that made me unloveable. Maybe even that I didn't matter much.

It began a couple weeks ago and slowly crept up on me, stealing joy, theiving pleasure. A lethargy crept into my bones and I didn't want to bother doing things that I normally love to do. Everything seemed like a chore, nothing seemed exciting.

As it happens with the grip of self pity, it took hold gently at first. Then squeezed. The first thing to go was sleep. Then, finally it took my sense of purpose. To look at me you'd see no difference, to be inside my mind - you'd see wreckage.

Yesterday morning I decided to take control back. I decided that I would do three things, unexpected things, that would matter to three different people. I would challenge the belief that I had lost the power to do good. That I took up unnecessary space.

I began early.

First, I had a email sitting and waiting. A parent had written me, through this blog, and asked for advice on a very difficult situation. I read their email over and over again, I had some ideas but it would be a difficult thing to write. I began simply by beginning. And as you all know, and as is my internal chant when doing something difficult 'As soon as you start, you're finished'. About an hour later I was done. The email was sent.

Second, a friend of mine is going through a tremendously difficult time. A proud man he finds it difficult to seek help and often rudely repulses any offered. During crises he turns off his phone, refuses to open email and becomes out of touch. He wasn't like me, feeling blue, his sky is scarlet with pain and regret. I picked up the phone and called him, knowing he would not answer, I left him the voice mail that I wanted to leave. It would anger him, I'm sure, but I did it any way. I told him that we loved him, I told him not to catastrophize, not to give up ... to accept mistake without conceding defeat. The call was made.

When thinking about the third thing to do, Joe called from the kitchen asking me if I wanted a cup of tea. I did. He made it. Once he'd left the office I pulled up my friends at FTD and ordered the biggest bunch of flowers I could. As I live in a city, they could deliver on the same days as ordered. Credit card at hand, flowers were ordered and a card composed that said what I needed to say, and perhaps what he needed to hear.

I felt the mist that had obscured my vision begin to lift. Even though I didn't know if anything I had done would make a single bit of difference at all, but that didn't matter. What mattered was that even in the midst of a bleak patch, there were things that needed my hand, there were people who needed my voice, there was someone loved who needed telling.

There is a hole in this world that I fit into. It's an odd shaped hole. But its mine. Reminding myself of this has been good. No, the icks haven't completely left me, but they are retreating. And even here at my desk I can smell the flowers, how lovely is that?

Monday, March 02, 2009

The Wait is Over; A New One Begins

It came.

It came unexpected.

I had forgotten and it took me a moment.

The phone rang at a little after seven last night. Joe and I each looked at each other, who's going to answer. Given that we run an international business, work calls come throughout the day. I'd not been feeling well, Joe was tired, proximity won out. The phone was closest to me so I picked it up. Thank Heavens.

A little voice said,"Hello?"

I figured it was a wrong number, "Hello?"

"Is this the big man in the wheelchair?"

"Is this a joke," I thought but did not say, instead I said, "Yes."

"You may not remember me from the other day."

Immediately I remembered. An elderly woman with a walker, an elderly woman with an abusive assistant, an elderly woman with a note from me in her purse. "I believe I do remember you. From Valuemart, you were with ..." I didn't know how to describe.

"The mean woman, yes, that was me."

"Are you OK?" I asked concerned and she started to cry, "It's been so long since anyone really worried about me, but I'm fine now, really."

We talked for about a half an hour. She had come home from shopping and when her aide had gone home, she pulled out my note and read it. She said that it really openned her eyes. She knew the aide was mean and hurtful but she hadn't thought it was a crime, she hadn't even thought of the police as a resource. She said she wasn't sure why I wanted her to call the police rather than the company that she uses to employ companion helpers, but she kept the idea in her mind.

After one particularly bad day, she waited until she was sure her 'help' was gone and she called the police.

Two police officers arrived and, "at first they just thought that I was just an old woman with petty complaints."

"They didn't believe you?"

"Not until I showed them." There was a long pause, my heart caught in my throat and tears rushed to my eyes. There exists only one form of proof that's almost irrefutable."

"Showed them?"

"The bruises on my arm."

"Oh my ..."

"And leg."


"And back."

We talked a bit and she said that she'd arranged for her daughter to come for a few days. Apparently her daughter doesn't like to be bothered with this sort of thing, but she will come and help her address the issue with the 'help agency' interview new staff.

"The police are going to want to talk to you. They said it helps to have an independant witness to her behaviour. That's why I'm calling you, I gave them your number."

"Do you know what's happened to your ..."

"The police said that she will be picked up and questioned. She will not ever be coming back here."

"Thankyou for letting me know."

I could hear her smiling down the line, "I was going to thank you for the same thing.

Glory Holes, Crippled Style

After a few weeks of getting used to Henry hauling my ass around, I thought it time to give him a real test. Henry, as you know, is my power wheelchair. I've not been able to use him much because of winter snows, a brief problem with a wheel and what with work and all. But I decided that we'd take a trip over to the Royal Ontario Museum as they were displaying an original 300 B.C. copy of an Egyptian Book of the Dead. An odd destination given the events of the past few days but things happen as they do.

We struck out and I was pleased to see the sidewalks and streets entirely free of snow and ice. The wind was bracing and tore through clothing with no pity. I'm sure my erect nipples looked like chest headlights as I motored down the sidewalk. Bravely carrying on, we hit Bloor Street and began the journey over to the museum.

Now I know it's the end of winter and all, but good jumping JEEEEEhosoFat, the freaking potholes so deep it was like peering down Hell's chimneys if you dared look over the edge. At some points the pavement had pulled away from the curb cut and it took sheer bloody will, faith and a devil-may-care attitude to launch over the side. I felt like that weird guy who used to jump over 30 cars while riding a motorcycle. I looked like a frightened child teetering at the top of a playground slide.


Remember that slight 'dirty' thrill you'd get when you were sitting in the back seat of a car and you went too fast over a hill? YES YOU DO!! I can't tell you how many groin tinglers there were in the few blocks we travelled. I began to think the streets were designed by perverts trying to give poor cripples a thrill. It was the most fun I've had sitting down, since, since, ... well never you mind.

The other day they did a story on the news about the potholes and their effect on those of us who use motorized scooters. The woman they interviewed looked flushed, with a rosy glow to her cheeks.

Well, now I know why.

I think I might drive to work tomorrow.

Sunday, March 01, 2009

Crisis in the Night

It's a feeling that's impossible to describe. It is so unique that it beggers explanations as to why it isn't recognized and dealt with immediately - it can only be one thing. It happened last night. I'd been in bed and asleep for about an hour. I woke up and knew that something was very wrong. I lay there, feeling a gnawing fear in my stomach, trembles in my knee - a catastrophe was in the offing. My skin was moist with sweat, my mind could not focus. I needed to do something. I needed to do it now. But I can't stand up. I'd fall over. In fact, I was lying down and inside I was falling down. A constant feeling of falling. A constant feeling of fear. I was not dying, I knew that. I was not living, I knew that too.

What to do ...

What to do ...

Joe shifted in bed behind where I lay. I remembered that I didn't live alone. It took only a second to place Joe in my life. He loves me. He HELPS me. I felt safer because he was there. I let myself doze.

I wake soaked in sweat. I can barely think. The fear has moved into my chest. I have to remember to breathe. Somethings wrong. Really wrong. I check the time, see the numbers but do not understand them. I try to get up, my legs are jelly. Sweat runs down my back.

Joe moves again and I ask him to go get my tester. It's very late. He's deeply asleep. He says 'sure' but doesn't get up. I wait. Maybe this will pass. No. It's getting worse. I call to him again. He gets up and stumbles into the front room, grabs the tester out of my wheelchair bag and brings it to me. I turn the light on and prick my finger and scoop the droplet of blood onto the strip. A few seconds later the monitor tells me that my blood sugar is dangerously low, the lowest I've ever tested.

Calling from the bathroom, Joe asks me the number. I tell him and he rushes to the kitchen to get me a glass of orange juice. It only takes a few seconds for sanity to return to my bones, for calmness to replace the fear in my stomach, for me to stop falling.

It's over. Until next time.