Tears

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.

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.

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.

What's Next ... Airport Wise

Wow.

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.

Super!

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.

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?

"I AM ATTENDING MY LUGGAGE!!"

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.

fresNO

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.

Moment

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.

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.

"Bitter?"

"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.

Ah, Man ...

ARG!

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?

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.

On The Road Grinning

You know what is a real turn on.

Interest.

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)

WTF

STOP IT!!

SHUT UP!!

TAKE SOME RESPONSIBILITY!!

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 ...

HERE'S THE KICKER

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.

YOU DID IT.

YOU THOUGHT IT.

YOU TOOK ACTION.

YOUR FIST HIT FLESH.

YOUR WORDS DAMAGED SPIRT.

YOU.

YOU.

YOU ALONE.

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.

WTF.

Enough.

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.

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 ...

Parades

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.'

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.

HOME

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.

Ooops.

We didn't get it.

Us.

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 ...

SEND THEM HOME.

Build capacity in the community.

SEND THEM HOME.

Construct places of welcome.

SEND THEM HOME.

Create freedom.

NOW.

Not 30 days from now.

NOW.

Breeze

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.

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."

crack

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.