Ethics

We have been waiting since to see 'August Rush' ever since we saw the trailers at the movie theatre. It opened here in the UK yesterday and we headed out to see the film first thing this morning. We went to the Trafford Centre, a shopping center whose imagination matched it's proportions. We found a disabled parking spot near the entry and headed in.

When we got to the kiosk to buy the ticket, the lovely woman who greeted us warmly, took money for only one ticket but handed us two. I'm immensely honest about these things and pointed out that she had made an error, we'd only paid for one ticket. She smiled and said that Joe did not have to pay for a ticket because he was my carer and was there to provide me assistance.

Off we went. My first thought was ... "Cool, free admission." Joe and I found seats and then he went back to get popcorn. I sat there, in the semi dark, and thought about his free ticket. I was really honest about her mistake about the money but was feeling dishonest about accepting the free ticket. Here's what went around in my head ....

Joe does provide me with assistance, getting in and out, getting popcorn and treats.

Joe and I had every intention of seeing the film, Joe is seeing it because he wants to, not because he's there with me.

Joe does 'care' for me but is not my 'carer'.

I probably make way more, I mean way more, money than the woman working at the theatre, I can really afford to pay for my ticket, Joe can afford to pay for his.

This is a benefit for all disabled people, let it go.

I'm kind of stealing from the people who made the movie.

It's an extra four pounds in my pocket.

I'm reinforcing disability stereotype.

Finally when Joe came back from getting the popcorn and pop, we talked about it. At first he was a bit annoyed ... the 'why do you always have to think about everything' kind of annoyed. Then after a few minutes he said that we should have refused the free ticket. Then a few minutes later he said, 'Well, maybe not.'

We agreed that we didn't know what was best to do ... or even if it matters a whole lot in the scheme of things. After the movie, which I cried through, we stopped for lunch and talked the ticket thing over again. Finally deciding to have a poll .... here on the blog ...

So here's the question:

Should people with disabilities who do not need a benefit turn it down? Should we have refused the free ticket and paid for Joe's seat?

Help.

The Castle

He was born at the wrong time to the right woman. 67 years ago Richard was born with Down Syndrome, his mother was informed moments after his birth that he was a defective child and should be sent to the 'Castle'. She decided then and there that no child of her's would grow up in Lennox Castle, the hospital for disabled children in her area. Doctors, unnerved at her determination to keep her child, young Richard, informed her that because he had Down Syndrome he would die young that his 'fourth birthday' would be his last.

She loved that baby.

Loved him.

When his first birthday approached the family began to wonder about the celebrations. It was decided then and there that Richard's first birthday would go uncelebrated, there would be no party, no cards, no gifts. This was not a result of grief, of denial, of shame. Richard's mom decided that if he didn't have a first birthday - he could never have a last one. If he didn't turn one, then he wouldn't turn two, if he didn't turn two he wouldn't turn three, and if he didn't turn three then he'd not celebrate his last - the fourth. Instead, family celebrations intensified. Christmas and Easter and all the rest became huge family celebrations. More than ever before the family pulled together. Celebrated every life together.

Richard never knew a birthday party.

He never turned one.

His neices and nephews, his great neices and nephews, never even knew how old their uncle was. Richard was hospitalized only once in his life. His family filled his room, many stayed with him through the nights, through the days, caring for him in shifts. Nurses had to constantly ask people to move and give them room to work. Though very ill, Richard pulled through ... as if his family had lassooed his soul and pulled it back from heaven's shore.

It was then that one of the boys took a look at the plastic wristband the hospital had placed around Richard's wrist to see how old his uncle was, no one knew. Because he'd never had a first birthday.

Richard died three years ago. Calculations showed that he'd lived for 64 years. He lived loved. He lived part of a family that celebrated belonging to him. There were "Richard" traditions, at every family wedding, after the dance between bride and groom, Richard took the floor with the bride. With every new home or apartment, Richard was the first overnight guest.

At his funeral, the whole family decided to walk behind the casket. They wanted not to be in cars hidden from view. They wanted to walk, publicly proclaiming their membership in Richard's family. This boy who was to be sent to the castle, lived his life a king. This boy who was to die at 4 had a mother that stole birthdays away and gave celebration to every day. This boy who was to be hidden died - and 5 generations of his family walked behind his coffin.

Crying.

***

I am in Falkirk, just about to start a day's long lecture, and my host Helen, is telling me the story of her husband's uncle Richard. I begged her to let me write his story here on my blog. She graciously gave me permission.

Thank you Helen, for a wonderful day with the staff there at Falkirk. And for the gift of Richard's story.

Fire in Falkirk

It's Friday, it's Falkirk, it'a tough morning. The hotel's alarm system went off last night and we immediately called downstairs to find out if we were in imminent danger, flames licking at our door. No, no we were told, it was a false alarm. But, they also told us, they didn't know how to shut it off. So we laid in bed with the lights off as the sound blasted us for what seemed like hours. A second call down had the clerk annoyed, it would only be a 'wee while' and we needed to be a 'wee bit patient'. Instead I just got a wee bit angry.

My reaction to fire alarms has changed over the two years that I have been disabled. I am on the third floor of this hotel, that's four flights up (given the European's inability to count). The elevator is not usable during fire. I am suddenly very alone and very vulnerable. I looked to see where the 'gather point' was for those with disabilities and it's out in the hallway, near the end. Hey, about where you'd expect a fire.

While the image of a fireman, all rough and sweaty, carrying me down a ladder might sound a bit Scarlet and Rhett but it scares the hell out of me. I can just imagine some guy hollering down, "Hey, Hal, we got a meaty one up here." I can imagine being left for last, dragged out of a window that's too small, plummetting to a safety ring and tearing through hitting the ground.

But it was a false alarm.

That kept ringing and ringing and ringing.

Reminding me, at every bleep, that my world was no longer as safe as it was before. It's been a tough night with little sleep, and the day is yet to come.

Sexy Beast

"He's so getting laid," Joe said looking back into the bar behind me. The traffic had been terrible between Glasgow and Edinburgh. First it took two hours to cross the top of Glasgow and then another hour to make it round Edinburgh's city bypass. Three hours and fifteen minutes to go less than forty miles. We were exhausted.

After getting into the room we decided to go for a quick drink in the 'bistro bar' attached to the hotel. I desperately wanted a tea, Joe wanted something frothier. We sit and begin to chat about the day and the people we'd met in Glasgow. We were both full of the good feeling of having met nice people who responded well to the challenges and ideas in the presentation.

Then Joe noticed a couple in a darker corner of the hotel and comments that they were clearly 'into each other'. I carefully glance around and see them. "Yep, they were on the slippery slope that leads to slippery sport. Eyes glued to each other, conversation quiet and husky, his eyes burned, hers smoldered. It's a hotel. You expect this.

We ordered one more for the road. This loses it's romaticism when the one more is green tea, but Joe was keeping faith for the family with a Stella 'Stash. The couple finished their drinks and then made ready to leave. We both kind of winked at each other wondering how fast they'd be making mattress music once they got to the room.

The man was standing now and offered his arm to the woman, who smiled up at him and took his arm. She then swung round to gather two crutches and expertly fitted the arm braces to her forearms. They were off. Both walking with real purpose past us and into the hotel.

A perfectly natural sight. Young lovers in love. I looked quickly around and saw nothing, but maybe envy, on the faces of others in the room.

OK, I like this a momentary break in the monotonous routine of disability prejudices and preconceptions. A woman can be beautiful and breathy with a body on crutches. Think television will ever catch up?

At The Metro Center

There were four of them. Mom and Dad and two kids. Both kids had disabilities. One with Down Syndrome, and the other in a wheelchair with cerebral palsy. They were sitting at a table at Wetherspoons - an awesome restaurant with reasonable priced food and a large vegetarian selection. I had already made a nuisance of my self by asking a guy if he'd move to a table further in because my wheelchair couldn't make it to the available table. He didn't want to, but he did, and I thanked him for it.

It was chock a block in the mall and Joe went to place the order. Beside me were a young couple, in thier early twenties I'd guess. They looked upset to be stuck between two disabled kids on one side and me on the other. Deal with it. In the end the lost interest in me but kept glancing at the other table.

At first their conversation was solely about the relationship between adults and children. Were they biological parents to the two kids, were they adoptive parents, were they paid carers on an outing? This debate took on a zeal of it's own. They were deep into this conversation. Luckily those at the other table didn't seem to notice. They were laughing, having fun, getting food all over and finding it hilarious. The young man with Down Syndrome had a very serious level of disability but he caught the humour and the mood of the table and every now an then a loud unrestrained and unrefined laugh burst out.

Finally the two decided that given hair colour and other cues, the two adults were probably parents. That didn't end the discussion. The woman said, "Can you imagine having another child when the first one turned out ... bad like that?" Boyfriend heartily agreed. They then dove into a genetics discussion that was frightening in the calmness with which they spoke of using genetics to search and destroy.

All the while a family, because that's what it was, was having a delightful lunch together. Goodness knows those two parents work hard to care for those two kids. Goodness knows that they probably have few opportunities to just sit and relax and enjoy. Goodness knows the goodness they have discovered in themselves and others.

I wonder about the baby this couple may one day have.

And worry for it's future.

Lunch

We left Newcastle and headed up the A1 on our way to Glasgow via Edinburgh ... there are shorter ways but we wanted to drive along the coast and though it was a gray and rainy day - the beauty was undiminished. Around one we began to feel peckish so decided to stop at a travel center place and grab a bite to eat. I love these places, they have restaurants and stores and lots of stuff to browse through.

We went into a chain restaurant kind of place and they sat me at a table near the reception area, it was a nice table, I was out of the way, and I could look out the window at the steady flow of people in and out of the center. We ordered our food, got our hands on a hot tea, and sat back to relax. This is our last day off, the next 19 working days I will be lecturing somewhere. The packet telling me where I'm going to be was lost and and and a new one is being frantically prepared, all I know is that Tuesday is Glasgow. After that I'm stymied.

As we were having lunch I noticed the bus boy, or rather I noticed his chest. He was a good looking young man of about 20, a hard worker, and was easy with his plesantries to the other staff and guests. But what I really noticed was a tag, upside down, on his shirt right beside his name. I think the idea was for it to blend in with the name, but I'm a 'watcher'.

When he came by, I asked him what the sign meant. It said "4 X 16 X W". He looked at me and said, "You don't know?" I shook my head. "Oh, I can tell from your accent that you aren't from here." I quickly told him that I was from Canada as I get tired of being mistaken as an American (nothing against Americans, I'm just not one). "Oh, he said and moved off leaving my question unanswered.

A little later he came by the but sign had changed to "100% B 2 L". And he saw me attempting to read the upside down tag. He came by and said, "You from around here?" I told him, again, we were from Canada. "You were looking at me so I thought maybe I knew you." I explained that I was more looking at the tag than at him.

"You want to know about the tag?" he asked.

I told him I did.

He pulled up a chair and said that he'd had a fairly serious motorcycle accident and sustained some brain damage. When he got out of hospital, everything was difficult because while he could physically do everything, his memory was 'crap'. He had been head waiter at this restaurant and it was obvious he couldn't do that anymore but his employers wanted to keep him on, good worker and all. So they came up with a system that marks his duties down one at a time. At particular times of the day, he takes off one tag and puts on another.

"This tag," he says, "is to remind me that right now we are changed over 100 per cent of the tables over from breakfast style settings to lunch style settings. The tag before ... um ... do you remember what it was." I did and told him it was 4 X 16 X W. "Oh, that means that I'm taking care of those tables there by the window.There are 16 tables in 4 rows."

He explained that the system messed up when they had special parties or holiday events but for the most part he did just fine. Loved having a job and working. As he left, he told us that if we came back, on own way down from Edinburgh, stop in but not to think he was rude if he didn't remember us. Most of the diners at the place know him, his family, the circumstance. They just introduce themselves again, "You do the same."

We said he would.

On the way out I nudged Joe to look at the wall beside the cash register. A black felt board hung there with all the tags that would take him through his shift. He looked to be about half done.

And fully supported

Honk if You Love ....

I don't like being in the way. Really don't like it. I think it's because I grew up fat ... fatty fatty two by four can't get through the kitchen door ... and was always made keenly aware of my size and the space available. Interestingly I've noticed that other fat folk seem to have similar approaches to space. Yesterday in the restaurant having breakfast I noticed a young very skinny woman sitting down at a table for six - with no thought of the lineup at the door - while a very large couple crowded into a small area that really was appropriate for only one. I'da done the same. Take up less space, avoid angry stares.

The wheelchair has only amplified this. I tire and sometimes have to stop when pushing myself from one place to another. Every time I look to park somewhere out of the way, I don't want two footers to vault over me. Joe's even worse about this, he'll grab my chair and move me while I'm paying for something so that someone can get more easily by. We've, um, discussed this a number of times.

Then yesterday we went to Tesco's to do some shopping and all the disabled parking bays were taken. We managed to find parking fairly close to the store but the parking bay was very narrow. I got out of the car and stood, bracing myself against the car next. Joe managed to get the chair out of our hire car and off we went.

On our way back the parking lot was pandemonium with way too many cars looking for way too few spaces. There was no way that Joe could get the wheelchair back in the car. So I waited while he backed the car up and got it parked so that I could get in and the wheelchair could be loaded. I got in easily but Joe took a few seconds to get the feet off the chair and loaded. Then he was folding the chair to put it in.

It was evident for all the world to see that we had parked in an available spot, that the spot wasn't wide enough to get the chair in, and there were people honking. Honking. Angry honking. Hurry up you are in our way, honking. Honking displeasure. Honk if you love yourself - honking. I could see Joe's blood pressure rise and his coordination fall. He was rushing so much that he couldn't get the chair in the back door.

Now the cars are screaming angry. With a huge shove Joe got the wheelchair into the back and then hopped in the car and drove away. He was upset that WE were in THEIR way. I was upset that THEY were in OUR way. Their attitude and their anger was in the way of us just getting about our business.

Is anyone so important that waiting for 5 minutes for a wheelchair to get put into a car is a bother?

What's happened to manners and civility?

Ah, the joys of travel.

A Moment of Truth

Driving up to Newcastle we stopped at a service center, because we are both over 50 and peeing now takes up about 30% of our day. The disabled washroom was up quite a steep little ramp, I would have simply used the men's room but the door was too narrow for my chair. Once we got up the ramp we discovered that the key to the washroom was kept at the cashier's desk so Joe went off in search of the key.

A young mother was waiting for her 4 kids to come out of various bathrooms. Her oldest boy was zipping around the area, searching out even the smallest inclines, using his 'wheels in running shoes' to careen him down slopes. "Kirsten, settle down," she said, exasperated as one of his 'whooshes' brought him perilously close to falling. He just grinned up at her and zipped by.

She saw me notice that he had Down Syndrome and gave me 'the face' but I simply smiled at her and went back to watching Kirsten scream with delight as he went down the ramp built for me to get up to the washroom. It was steep and he really travelled as he flew down the ramp. By then his sister, maybe a year younger, was out and made some comment about the brother still in the washroom.

Kirsten flew by her grabbing her and spinning her. She laughed but called after him, "Stop that Kirsten." Seconds later the other boy came out of the washroom and asked if they could all go into the shop before getting back on the road. Mom called Kirsten over and gave them all a lecture that they were not to use the wheels in the shop. That they'd break things. That she'd break them. All agreed.

Quickly Kirsten came to the ramp beside me and called to his mom, "Just one more time," and zipped down the ramp. She smiled over at me with a 'Kids, what do you do with kids' look on her face.

I took a chance and said, "You know, his primary disability is that he's a boy."

She erupted into laughter saying, "You don't know how true that is."

Nice

We arrived at Heathrow after a relatively comfortable flight, I even slept a little. We usually have trouble at airports as I use my own chair and the 'assistants' who show up to give me a push to the baggage area always bring their own chair - assuming that most disabled passengers are 'distance disabled' and are ambulatory in the rest of their lives. I've encountered actual hostility at the fact that I am in my own chair and the 'assistant' doesn't want to leave their chair behind to get me to where I want to go.

The woman who was there to assist was not hostile about my chair but she was damned and determined not to leave her chair behind and it was a comic dance trying to figure out how to get both chairs to our destination. Though I don't think she meant it, I ended up feeling like a total inconvenience to her. Not a nice way to begin our UK trip.

As we entered the baggage hall, I asked to be left by the exit as Joe and the 'pusher' got the luggage from a carousel further along. It didn't make sense to be pushed there and then pushed back. I sat and watched as other passengers got luggage and rushed out. One woman, dressed in a business suit approached me, holding out her passport. It took me a second to realize that where I was sitting had me looking like I was in a position of authority.

"No, no," I said, "I'm just waiting here for my friends."

"Oh, sorry," she said, "you just looked very official."

She left a real smile on my face. The presumption of competence! How nice. When I live in a world where most see my chair and assume that I am a 'begger boy, begger boy' to have someone approach me without prejudice was like a drink of water.

So there it is ... the world may be full of those with prejudices and preconceptions, but there are also people who have transcended stereotype and are willing to see people with disabilities as having power and authority.

Nice.

At The Conference

Such a contrast.

Sitting in a hotel room watching a report on the plight of people with intellectual disabilities in Serbia - seeing horrific images of adult bodies twisted to fit into cribs they were never lifted out of. Hearing the cries of a people who's entire life is an experience of abuse and abandonment. While outside my room over a hundred people with disabilities were gathering to be part of a conference about rights, about voice and about freedom.

The next morning I led a session for those self advocate and for two hours we worked together, laughed together and learned together. I tried not to let those images get in the way of what I was doing. I tried to focus on the journey here to this place for those who were attending. Most were of the age to know institutionalization, to know being placed apart. Most here could speak to the issues of abuse.

It's natural to want those images to be foreign, away from us, something that others do ... but it's not. Perhaps what was shown was more extreme than what we did ... but I'm reminded of 'Christmas in Purgatory' the stunning photographic essay of institutionalization in the United States - the images weren't far off from what was shown on television.

Yet there are those who want to stem the tide of freedom for those with disabilities, want to reopen the doors of the institution, close the doors of the community. There are two things that must be at the forefront of our minds.

Never forget.

Never again.

Military Might

You could tell that this was the place. We pulled into the parking lot of the Holiday Inn in Trenton and every disabled parking bay was full, there were serveral people with disabilities outside the door having a smoke. The line up waiting for rooms and registration was abuzz with humour and excitement. I'd been looking forward to this for awhile. The conference is one that is aimed at developing skills in the self advocate movement.

As we made our way through the crowd there were staff I knew and we waved or briefly chatted, there were self advocates that I knew and we did the same. It's cool being in a place where everyone looks just a little bit different. We got our keys and made it to the room only to find out that we'd been given an inaccessible room.

Back to the front.

More people were there now. They'd set it up such that those attending the conference got their conference registration, materials along with the room key from a group of volunteers at a table just inside the door. Those registering for the hotel, but not the conference, went straight to the regular registration desk of the hotel.

Two army type guys came in to register. The first thing they registered was 'Whoa, this isn't your usual lobby," before they could recover a woman with a disability gave them a huge grin and said, "You need to go to the desk over there." Military trained, military manners, they said "Thanks, ma'am." She, the ma'am, in this case thought that being called 'ma'am' was very, very funny and burst into the kind of laughter that is unrestrained.

Their faces looked impassive but I'm convinced the younger one wanted to giggle. I don't think of military men giggling but I'm sure they do.

They proceeded to the desk and were checked in shortly. But not before another van load of people with disabilities had burst through the door. Then I saw that the younger guy was now wearing an open grin.

They didn't notice me sitting in my chair, looking like Jabba the Hutt on vacation. I heard the younger guy say, "You know, this is kind of what we are fighting for isn't it. Freedom for everyone. You've got to admit this is cool ..."

And they were gone.

I don't know what they teach in military school here in Canada - but they get the most important word about inclusion in the english language.

Everyone.

Booked

Arriving home from work there is an email from an old friend. We used to work together, years ago, and talk maybe two or three times a year. The tone of the email was a little different, saying that she'd lost my phone number but would like to talk to me right away. I am a castastrophizer - why have a little worry when a big one will do? The urgency communicated emergency and I quickly picked up the phone to call.

Luckily she was in. We talked a bit, I tried to keep the beating of my heart out of my ears so I could hear. There was nothing in her tone of voice that said something was wrong. And I was not, WAS NOT, going to tell her that I'd gone into a panic when I'd received her note. She's always had a biting wit and she's always mocked me for my tendancy to go from 0 to 100 with anxiety. I'm on pills for that now - she doesn't know that either.

After catching up I asked, nonchalantly, why the urgent tone in the note.

"Oh, that, I knew that would get you, it's no big deal except I know that you go away for a month every year at this time and I just wanted to get to you before you went away."

"OK, you wanted to chat?"

"No, no," there's someone else here who wants to talk to you.

Suddenly, David was on the phone saying 'Hi'. This is a guy who I worked with years and years ago, during my time working with him, I had helped organize his IPP meetings and did the 'what are your hopes and dreams' converstations with him. David was such a reasonable guy, he wanted very little and was happy with less. He would set goals that benefitted others for heaven's sake. A finely made soul lived in David. But, all in all, I wasn't sure why he was calling.

"How are you David?"

"Wait," he said, a hushed tone in his voice and I could hear pages rustle. What was he up to ...

His voice returned, stilted, "'Great. Just great!' Resting in bed, Peter was angry ..."

"Oh my God, David, oh my God!!" I started to cry.

"He wasn't quite sure who he should be angry at."

One of David's big goals for himself was that he would learn to read. He had been in a couple literacy programmes and just didn't manage to pick up even basic skills. He was never downcast about it, always figuring there would be a next time. When my book 'Four Feet Tall' came out, I knew it would be a story that David would like so I dropped by and gave him a signed copy. He told me he would learn to read it one day.

That's today.

After celebrating with David on the phone, having him promise to talk to me again when he'd finished the book, I was put back to the staff who'd called me in the first place. I could tell she'd been crying too. She told me that one of the part timers at the house was a university student studying economics. Well that student had a friend in Education who, upon hearing David's desire to read, volunteered to do individual tutoring.

It's worked.

All those years ago David set a goal that only he believed in.

Today David acheived a goal that only he could.

Acting Rash

A while ago I wrote about getting an infection and having IV antibiotics. I haven't revisited that topic because the infection, while slow the heal, was healing. I hadn't had an infection like that for over two years so it depressed me more than anything. But I did what I needed to to, took whacks of antibiotics, rested well, you know the drill. Well, as of yesterday the infection was getting smaller every day, the pain was less - I was popping fewer T3's to get through the day.

But I noticed that my hands were drying up, skin was falling off, my lips became chapped and my tongue really sore. So, I called the Doctor. I've got a Doctor that returns calls and chats over the phone when needed. He called me back a few minutes after I explained the symptoms to the receptionist and he told me that I was having an allergic reaction to the antibiotic and that he was glad I called when I did.

So in a few hours I start the new antibiotic and expect that it will wipe up what's left of the infection. Already my body is healing itself from the allergic reaction. My hands are no longer flaking and my lips are back to being full and luscious. And I haven't been off the pills for 24 hours yet. Amazing.

Oddly, this reminded me when I was working direct care in a group home years ago. There was an amazing group of staff there serving some very cool people with disabilities. It was the one and only time I worked residential care and I couldn't believe what a great job it was. We were helping people live their lives at home. They'd all come from the institution, they'd all been recently freed. I loved it.

Almost.

A new staff was hired who came in angry. I don't know what kind of questions people ask in interviews but - really - sometimes you think they just sign 'em up and put 'em in. The new staff saw 'problems' everywhere, wrote 'programmes' for everything, felt we were 'letting them get away with way too much'. Staff meetings which had been fun became difficult and left everyone feeling frustrated, put down and undervalued. A fun workplace had become a difficult one.

But it was worse for those with disabilities. They had to bear the brunt of the new programmes, the twisted expectations ... they had come 'home' to the community and now their home had become a ward. Their wasn't an aspect of our service that wasn't effected. We laughed less. We did less. We began to form cliques and work became about staff politics not client rights.

It's possible, I now realize, for whole agencies to have an allergic reaction to a toxic attitude. This is why I believe that 'attitude' tops the list of desirable traits in staff. We can train everything but attitude.

I remember the day that the 'new staff' left to take on a new job in another agency. We took a breath, waited for healing, and it came. A lightness came back into the work and everyone seemed so much happier.

I've made a new resolution, now that my body is healing both from infection and from a reaction to treatment - I'm going to ensure that what's toxic in my personality stay far from work. That I'm going to imagine an attitude check at the door to the office - with a border guard standing by checking credentials.

Because I control my attitude.

And I don't want to give my agency a rash.

Today

It's 9:30 and I'm only now writing my blog. Usually I'm up writing before 6 and have the days post published by 6:30. But ...

you ever have one of those mornings ...

where molassas runs in your veins

where tying a shoe is a challenge

where having a conversation that doesn't turn into a fight is difficult

where you are living at the edge of sanity ...

it was one of those mornings.

I checked the calander four or five times to make sure that it was Monday, that I had to go to work, that I didn't have the option of crawling back into bed and crying. But it was Monday. I have meetings today. Things to do, people to see.

Arriving at the office I grumbled as I got out of the car. Who the hell thought up this idea of working for money. Please.

But coming in the door and being surrounded by people talking, working, laughing ... doing things of import. Sitting down at my desk with the phone ringing already and the message light flashing.

It matters that I got up.

How lucky is that?

Antidotes

Flipping around the television stations in a hotel room we fell upon an old Bruce Willis movie neither of us had seen. We were both grumpy from the days events and were both struggling to regain control of the rest of the day. When suddenly there was a 'Screech' and a 'Crunch' and we were both glued to the screen.

There ain't much that goes wrong that can't be fixed by a good car chase.

I came out of the store in the mall, fuming, I'd tried to get help from a clerk who just couldn't see me. I wouldn't have needed any help at all if the aisles had been just a little bit wider. But she just would not, either see me or hear me. I burned. After pushing into the mall, I noticed that they had a coffee shop plunked in the middle of the walkway.

There ain't much that goes wrong that can't be fixed by a good cuppa tea.

Answering the phone as I was powering up the laptop to write my daily blog, I simply said 'hello'. On the phone was a woman who had taken exception to something I had said in a lecture. Even though we had talked on the day, agreed to disagree on the point, she's been calling every few days to continue the discussion. It's beginning to feel like stalking. I try to stay calm and listen. It's hard. I check hotmail and find my niece has sent me an email.

There ain't much that goes wrong that can't be fixed by a joke email about testicles.

Perhaps it's because it's Sunday and I'm at home and feeling peaceful, perhaps it's because I'm feeling like I'm in a state of gratitude ... but I marvel at the ways - in each day - no matter the hardship - the indignity - the sheer grind of living - there are antidotes to what could poison a day, an attitude, a life.

So ... "Hey, God, Thanks."

I Fell in Love

I fell in love, hard.

Beauty always overwhelms me.

Going to give a lecture, anywhere, has both Joe and I tense a little before arriving. What kind of accessible issues are we going to face? Cut curbs that are indentations in concrete rather than ramps from one level service to another? Doors made for the hips of skinny model women? Door openners that are for service or for show? Every new lecture venue has it's own challenges, we get there, get through and then make a list of what they really need to do if they want people with disabilities to feel welcome.

Well, it's different here in Grand Rapids, Michigan. I lectured yesterday for staff (and will again today for parents) in the Grand Valley State University, pew campus. The place is brand new. It's design is welcoming. But, but, but, it's like who ever designed it incoporated accessibility into every feature. From the parking lot in we faced no obsticles. They even had this area where you go in through one door and then a few seconds later through another. You push the blue badge guy on the wall and the first door opens and the second door opens on your approach. Magic.

The lecture hall was sumptuous. The kind of place that audiences love but for me, upon hearing I was on a stage, I expected unweildy ramps at impossible angles. not here. It was designed like they thought that perhaps one day they'd actually have a speaker in a wheelchair in front of an audence. The conspired to make that eventuality possible.

What was amazing to see that universal accessiblity, when designed for, make the buildings both more functional and more beautiful at the same time. Accessiblity, when it's not an add on, enhances the environment for everyone.

This was the first time I was in a space where I felt that, from the ground up, disability was considered. I felt welcome in the BRICKS.

I fell in love with that building.

Because I felt loved by the building.

And only because it said, in its own language in its own way, 'Welcome.'

Ruby Waved Goodbye

They rounded the corner and saw each other.

Mike is telling me the story while showing me pictures of baby Ruby in the witch costume Joe and I had picked up for her. She looked sweet all decked out in the costume, witch hat balanced on tiny head. She loved the costume so she wore it for the whole day.

I could tell by the way Mike was getting into the story that he'd waited to see me to tell this one. Ruby is still too young to understand dressing up and the spirit of Halloween but she did understand that people were making a fuss over her in her costume and even more than that, they were giving her candy.

Mike's pleased that Ruby is living in an environment where there are peoples and cultures that she is exposed to. She's spoiled by the Indian storekeepers at the corner store. The Chinese couple who run the restaurant always come out and fuss over her. She's used to different faces, differing accents and she's learning that people are people.

But something new was added to the mix. Ruby lives very near where the Famous People Players - a troupe of people with intellectual disabilities - run a dinner theatre. They are just part of the neighbourhood so no one much notices. Well, Ruby rounded the corner and there, coming down the street was another witch. Right away she noticed that the woman with Down Syndrome was wearing the same costume.

They stopped and stared at each other.

"Well, look, I've got a little witch sister," said the woman with Down Syndrome.

Ruby walked up to her, took off her hat and offered it to her. She squatted down and said, "I've got my own hat, but thank you." Ruby giggled at the attention.

She stood and chatted with Mike a bit about her work and Halloween and then noticed the time and said, "I'd better hurry on."

Ruby waved.

"You've got a cute little girl there."

"I hope she grows up just like you," Mike said.

She froze. Looked at him to see if he was mocking her.

He wasn't.

"That's the nicest thing anyone has ever said to me."

"Well, I meant it."

She slowly turned and went to work while Ruby waved goodbye.

Me, Then

I saw him again last night.

I found him this morning.

In a very private place, where no one will ever look, I keep a few things of my own. Having been part of a couple for coming on to 39 years, it's very difficult to have something that's just my own. It's beside me now as I type, open to the page. He's there.

Slightly turned looking at the camera, standing in front of the kitchen counter spreading peanut butter onto bread. Even though caught by surprise, his eyes show no shock, no outrage, just a continuing sense of humiliation. Surprisingly he's no where near as fat as remembered, no where near as fat as made out by others. But it's his eyes. Already dead.

It's the only picture of him in the book, other than a frozen smile located to the left, at the back of the class photo. It was put there for laughs, 'fat guy makes self food' what a riot, what fun, here let me look at that again.

He doesn't know that he's a year away from falling in love. He doesn't know he is a lifetime away from who he will become. He thinks there is no hope. He gave up on hope as too painful a proposition. He just works at survival. He's got the message that he's stupid, he knows that he's ugly and, of course, 'worthless' tops the list. But he's only a year away from someone believing in him - and what he'll do with that belief is beyond belief. He doesn't know that there are gentle people in the world, there are teachers who will want to teach him, there are friends who will want to be near him, there are even those who will depend on him.

But he doesn't know this yet.

I put the yearbook back in it's hiding place. I close the cover on his dead eyes. I hold the book to me and try to yell down the corridors of time.

"Abuse will end."

I'm guessing that's why it matters so much to me now.

I want him to hear that.

I want others to experience that.

I never know why he visits me, that guy in that picture. I feel disconnected to him. Disconnected to my own past. But he's there, always there. At the back of my mind, at the edge of my words, in the deepest part of my work.

No one held him then, so I try to gently hold him now.

Realization

There were probably nearly 60 people with disabilities there. They came in bunches, talking, jostling for seats - a joyful noise. Many I've known for years, Larry and Micky and David and Geraldine, many were new to me, new to the organization. They were all there for the second of two self advocate workshops that I was doing, both looking at rights.

As I taught, I enjoyed the easy humour we all shared together. Everytime someone came up to participate in a role play or by reading something aloud, the whole audience erupted in applause. They encouraged each other, rewarded each other, respected each other. I knew that a lot of this came from the organizations committment to self advocacy and the emphasis that was placed on 'voice' and 'power'.

But something stirred in me as I was teaching. An emotion of incredible depth. At first I didn't know what it was or where it came from. But suddenly, without warning, I felt tears building at the corners of my eyes. I was afraid I was going to simply stop teaching and begin to cry. I held on, grabbed hold of my heart and kept on going. My notes grew blurry as I followed the script of the workshop.

You see, I realized.

Suddenly realized.

I had only known them, free.

To me they have always been free.

They had lost the stink of institution hallways.

They had lost the bowed shoulders of the captive.

And they were simply, gloriously, free.

I couldn't imagine anyone ever turning the key and locking any of them away again. They had tasted freedom, they had discovered their place, they knew not only that they deserved community but also that it was owed to them.

I was, I am, part of their heritage of freedom.

I have, we have, walked from the frontiers of bias ... to this room.

They would leave here and go home.

Home.

Free.


I suppose that's worth a tear, or two.

Monday With Essex

It's been a while since I've done one but I was more excited than anxious. As I travel I do primarily workshops for staff and parents but occasionally I am asked to do one for people with disabilities. I am here in Windsor doing two days training for those associated with the Essex Association for Community Living. As they were, perhaps, the second agency in Canada to have people with disabilities in care write a 'Bill of Rights' for service, I wasn't surprised to see that over the two days I would be doing an hour long presentation to self advocates on each of those days.

There were perhaps 30 in the group and right off we had fun, and right off learning started flowing back and forth. I keep learning that my 'instant assessments' of people's skill levels are so off. A woman who had Down Syndrome came in looking disengaged from the environment and didn't respond when people said hello. She sat down heavily staring at the table. I, of course, saw a significant disability. I of course was wrong.

We talked a little about emotions and when we got to 'angry' she turned and said, "I'm angry that I was brought here and I didn't know why I was coming or what this was about. I was angry that my staff never bothered to tell me, didn't respect me enough to get my permission. I told my staff this morning that I was angered and my staff apologized to me, said she thought I'd been told, promised it wouldn't happen again."

Oh.

Then later we began talking about rights, she was the first to say that the bill of rights needed a new one added ...

We have a right to be treated with compassion and respect by staff.

Oh.

There was another fellow at the table who was listening very much to what she had been saying, "You know what you've got to tell them," he asked me.

"What?" I asked him.

"We aren't a job, we're people.'

After it was over I had to phone Nancy and let her know what had been said, the depth of the sentiment and the need to take what people were saying and really think about it.

"We aren't a job, we're people.'

Here's a challenge, over the next few days I'm going to think about that, think about what it means. I invite you to do the same.