My Work Day

*Adult Advisory Warning*

**Seriously**

I had an odd day at work today.

I'm working on an article that will appear in April and as a result I read about:

Menstrual Management

and

Interesting Facts About the Penis

I learned:

That the word testify does not come from the practise, as described in a biblical passage, of men swearing an oath while holding on to the kings balls - even though you will find that faux fact everywhere on the web.

That there are approximately seven calories in one ejaculation ... and that an average ejaculation hits 28 mph ... making it the perfect low cal fast food.

I found:

An extremely interesting study on the effect on male genital health care on men with significant intellectual disabilities when care is provided by female versus male care providers.

An interesting how to guide for older men on how to 'milk' the urine out of their penes in order to avoid middle age dribbling.

I discovered:

An interesting use for the foreskin from circumcised penes.

The nature of the correlation between foot size and penis length (there is none: damn there goes the only benefit I could have from perpetually swollen feet).

And perhaps the oddest conspiracy theory:

That the mushroom shaped head of the penis evolved so that it can pull out other men's semen, thus making it kind of a featherless human duster and, correspondingly, becoming the only bit of housework that men are not only willing but eager to do.

All this - while at work.

Sometimes I think I have the funnest job possible.

Ramping Care

When my doctor told me that his office was moving, for a moment, I panicked. He's a really good doctor and he's taken really good care of Joe and I. "Will the new office building be accessible?" I asked, on hearing the news. My doctor smiled and said, "When I have a patient who has a disability blog, I guess it had better be." I laughed, relieved. Finding a doctor is hard enough, finding one you trust is even harder. We immediately left his office and went over to see where the new office would be. There was one step up and into the building. I emailed him right away. ARRRGGGHHH. He emailed back right away saying basically, "We haven't moved yet."

So today I went to the new offices for the first time. I was able to ride down in my power wheelchair as the office is closer to where I live. On getting there I saw that the building had been ramped. It's one of those old office buildings that must have towered in it's day but is now a lovely, quaint, five or six story building. I rode up the ramp, pushed the button for the door to open and rode in. That building has been there for a very long time and I wondered if I was one of the first people with disabilities to ever make its acquaintance.

The elevator took us up to the clinic and in we went. It was amazingly accessible. We checked out the loo and it's perfect. I didn't know about getting into my doctor's office because my power chair is big and I wasn't sure about the turn. But when I called to ask the configuration of the office the receptionist, a lovely woman herself, told me that if there was a problem, they had a examination room created that had extra wide doors and if I couldn't get into the regular office, there would still be a place to receive care.

I rode into his office with no problem at all. He told me that they had tried to ensure that all entrances were accessible. The whole layout was welcoming and, oddly for a medical establishment, not at all forbidding. The doctor asked me questions, genuinely interested in my take on the accessibility of the place. How as the ramp out front? How was getting in? He even asked to let him know if there were any problems with getting out - was the ramp OK for descending? There were no problems. After leaving Joe and I were relieved. At our age, having health care from a trusted health care provider is such an important thing. I don't have to see the doctor often, but I need to know that when I need to, I can.

I am writing this because I learned something from my doctor and the clinic where he works. Accessibility can happen if it is willed to do so. They took a space that once I could never have gotten into and made it such that I could. They willed this and they did this. Of course I know that this wasn't done for ME and my doctor had only been joking about me being a disability blogger. I know that. I also know that this clinic, it's doctors and it's employees have taken their oath seriously.

First do no harm.

There is often no recognition of the harm that comes to one, left outside, looking in.

Service, Support and Success: January Issue

The January Issue of Service, Support and Success: The Direct Care Professional Newsletter has been sent out. If you want it and are not on the mailing list or you did not get it, and you have been on the mailing list, then you've fallen off it and you need to let me know at dhingsburger@vitacls.org. This issue is about the top ten recommendations made by behaviourists when thinking about problem behaviour.

Tomorrow's blog will appear at midnight EST.

January 23: International Day of Mourning and Memory

January 23rd: International Day of Mourning and Memory

Rolling Around in My Head will be commemorating the 2nd annual International Day of Mourning and Memory. This day was established to commemorate the lives lived by people with disabilities who were locked away, who ARE locked away from full participation in society. It was also established to remember those, our elders, who have worked tirelessly for inclusion and access, for the word 'all' to actually mean 'all'. We have a history, as a community, of suffering and segregation, but we also have a history of struggle and vision and power and voice.

The ways of society in regards to the different have been powerfully abusive:

CONGREGATE
SEGREGATE
PERSECUTE
DESTROY

A few months ago I met an elderly woman with an intellectual disability. She had lived most of her life in an institutional setting. She left the facility, old and afraid, in her mid seventies. She was not afraid of living in the community. She was afraid that she would love freedom and then have it snatched away. She lived, every day, as if it would be her last lived free. She will never trust. The world was once taken away from her. Driven, with a lie ringing in her ears, to the place where she would be locked away. "They told me that we were going on a vacation. To the sea. They told me we were going to the sea." She never saw family again. She knows she has a brother. But, though she waited, he never came.

She is in her early eighties now and those who support her, support her. They are devoted to ensuring that she drink deep from the well of liberty.

She calls 'lie' to those who believed that she did not belong with ever breath she takes.

Her locking up was a crime against her the likes of with are impossible to understand. The crime: difference. The penalty: Life lived in chains.

The day was chosen because January 23rd was the day Sandra Jensen, a woman with down syndrome, who had been refused a heart transplant because others decided her life wasn't worth life, received a heart transplant. Her fight to be recognized as a valued human being culminated in victory. This is the day which gives heart to hope.

So please join me ... write a blog, tumble, tweet, facebook ... do what people do to get the word out. Let everyone know that, on January 23rd, we as the disability community stand united in our commitment to freedom for all. We are united, pride against prejudice. We are a people to be reckoned with.

And we are here to stay.

Look What Shook Loose

Confession: I found it, oddly, very difficult to write about my feet, the shoes, and my need for help getting dressed.

I thought about why this might be, after all I write about a lot of personal things here, and decided that it's probably because I mostly write about the social aspects of disability, not the physical aspects. And when I do write about the physical aspects, it's mostly about accessibility in terms of grab bars and tall toilets - discussing locations more than limitations. So, as I wrote about my feet, the shoes and the help I need, I felt kind of exposed. The discomfort that I experienced had me shifting around bits and pieces of furniture that's stored in my memory and I remembered something. Something long forgotten, now incredibly vivid.

Long before I became disabled and maybe a couple years before Joe started travelling with me full time, I was making a trip on my own to give both a keynote and a workshop at a small regional conference. A day or two before I had fallen and had really hurt my back. I was having trouble with getting my right foot dressed - sock AND shoe were a problem. I managed, but painfully, to do so. Joe and I talked about maybe me cancelling my flight and the gig because, without him there, I might not be able to get dressed in the morning. It was a chance.

In the end I decided not to cancel and to make the trip. I joked to Joe about how lucky I was to work in the disability field. If I can't get either my sock or my shoe on, I'd simply ask someone to help me. The organising committee all were direct care workers and they all seemed incredibly caring and wonderful to deal with. Surely one of them would be OK with helping. All my life I've lived with naivete as a lodger in the part of my brain that forms my world view.

So, I landed and was met by a group of three people. We shook hands, they all told me how excited they were that I was there and that they were going to hear me present. Lovely. Really lovely. On the car ride from the airport I mentioned that I had hurt my back and had briefly considered cancelling. I have learned, from experience, that you only mention this kind of thing once there. Then I remarked that I might need help in the morning if I couldn't get either my sock or my shoe on.

Suddenly the atmosphere changed in the car.

Yikes.

I made a mistake.

It was a really, really, really, and I should say REALLY, big deal.

Then I began to sputter that most probably it would all be OK in the morning. And it was. As I walked from breakfast to the lecture hall with the one fellow who was on the committee he confessed to me that he'd had difficulty sleeping the night before because he was so anxious about having to help me in the morning if I needed it. I asked him if he'd ever assisted someone with a disability in his care with dressing, he told me he had, 'all the time.'

But this was very different for him. And, I learned, it was very different for all of them on the committee. It seemed that in helping someone with an intellectual disability they felt elevated by the job, by helping someone they saw as 'important' they felt that doing the same thing would lessen them.

I was disturbed then, and am disturbed now as I write this, that the view of intellectual disability that is the subtext of what was being said was that they were 'lesser' so that helping them dress simply emphasized the ability and the value of the helper. Helping me was different, the difference between serving and being a servant I guess. Yikes. In fact, double yikes.

All these years later, I find it very hard to ask someone for help - and I wonder if this early experience had a more profound effect on me than I might have thought.

I don't know.

But I guess this is why I write. Telling you about my new slippers, and telling you about Joe and I putting on each others shoes, shook loose something that I needed to think about. And though, this blog is now nearly done, my thinking about this has only just begun.

Laced Up

Last week Joe hurt his back helping move a piece of furniture. He said he didn't notice it at the time it happened, or even through the rest of the evening, but when he got up in the morning he was in pretty severe pain. He moved around like he was a spry 106. I couldn't watch him sit down or stand up because the pain was so obvious on his face - it looked almost unbearable.

We had plans to go out and meet friends for lunch and we both really wanted to go. Joe said that he was fine walking, his problem was doing almost anything else. So, we decided to go. Our first obstacle was in getting my feet shod. I need his help to do this. There was no way he'd be able to bend over to assist. Then, he realised that there was no way he could get his shoes tied either. We were stuck.

I suggested we go to the bedroom and use the bed. I'd lie down and he'd put on my socks and shoes, then he'd lie down and I'd tie his sneakers. We agreed to give this a try. We got me done first and then it was my turn. I realised as I was tying Joe's shoes that I hadn't tied a shoe in almost six years. My fingers remembered how to do it though and soon enough his shoes were tied and we were off for lunch.

When we got back home, we reversed the process, and all was well.

I was sorry, obviously, that Joe was in pain but it was also nice to be needed to help him with something he needed. I know I help in many other ways around the house. I help cook dinner. I help with the banking and the finances. I help with organising the schedule. I help fill the laundry basket. So, I do help.

But helping with something more personal, like getting dressed, is a very different thing, isn't it. It's and odd form of intimacy. My fingers tied his laces - see how poetic those are when combined together. My fingers / his laces.

I remember the first time I helped an adult get dressed. He lived on the ward of an institution, I was a new staff. We were all going out. He had his jacket on and he approached me, he lived in the world silently, and held out his jacked. He needed the zipper done up. I had read a whole bunch of university text books. I had done a lot of volunteer hours. But I was unprepared for the impact of that little gesture that asked for help. I knew that the gesture was one of both trust and vulnerability. I got the zipper started and watched him pull it up the rest of the way.

I wondered then - is there anything more honourable that this work?

Now years later I need help with my shoes and socks. I know, now, that what I felt was true. It requires both trust and vulnerability.

Tying Joe's shoe reminded me about the wonder of the gift of giving.

By the next morning Joe's back was better and he no longer needed my help. Even so, I couldn't help but notice, that he tied his shoes quickly without thinking. Already the laces were missing me.

A Fantastic Fairy Tale

Shoes.

I never knew what a big deal they would become.

I know that I don't walk much, but shoes had become a huge issue for me. Not because of the soles but because of protection and warmth. Shortly after becoming a wheelchair user my feet become hugely swollen - and stayed that way. I make sure I elevate my legs, like I'm supposed to. I make sure to do the exercises that I'm supposed to. I follow directions well. But nothing helped. My feet just changed their shape. Now I've got big feet to begin with. Add on the swelling and ... presto chango ... I have been unable to find anything to put on my feet.

I've had people knit slippers for me, but they don't stay on properly and end up being dangerous.

I've taken to wearing double, triple and even quadruple socks for warmth in the winter. Joe jokes that he measures the winters temperature by sock layers.

I've talked to medical type people, foot specialists included, and found no help. Other than a shrug and an 'oh well' expression, I've just been left to figure it out on my own. So, we've done what we need to do. We travel, on the road, with a mat so that when I get out of the car, if it's raining, I can step on to a dry mat and then get into the wheelchair. Joe throws the mat back up into the car to keep it dry for when we need to reverse the process. I've always been a bit embarrassed having my own carpet placed down for me ... a bit like the queen (shut up).

A few weeks ago, I tired of this.

I wanted shoes.

I've looked before on the computer and have never found anything that would help. I shy away from those orthopaedic shoe stores as I went in there once and was promised that they could fit me and ended up leaving with an expensive pair of shoes that didn't fit. I honestly, HONESTLY, don't know how that happened. Shoe salespeople can be really, really frightening.

So, I went to the computer again and somehow must have put in the right words because suddenly I was looking at a site that had slippers, that looked enough like shoes to be considered, for swollen feet. I know how my feet are shaped now and from the picture I could see that they looked like they might just work. I, with hope in my heart, I ordered a pair.

They arrived, it seemed, within hours.

Joe brought me the box. He was smiling. I don't know if he was happy for me, he knew how much I wanted to have a simple pair of shoes, because of the shoes or because of the fact that he wouldn't have to Sir Walter Raleigh me out of the car every time it rained. I opened them carefully and looked at them. They won't set the world of fire in regards to style, but I didn't care.

Would they fit?

Joe helped me and within seconds my right foot was shod.

Well, neither of us really worried about that, my left foot is bigger.

Then, barely, just barely, I was wearing shoes.

For the first time in five years.

I can't tell you what that felt like. I got up to walk and was unsteady on my feet - well more unsteady than usual. There was a cushion beneath my step. Heaven.

We went out.

It was cold.

My feet were warm.

One pair of socks and one pair of shoes and my feet were warm.

I'd gotten used to life without shoes. I'd gotten used to looking at the feet of others with disabilities and even asking some of them about their shoes. I found, surprisingly, that no one was ever upset at my intrusion, everyone I ever spoke to about feet needing shoes understood the need for feet to have shoes. But after each discussion I knew that what worked for them wouldn't work for me. I remember several times sitting with a piece of paper and drawing the shape of my foot for fellow wheelchair users and comparing it to their drawing of their feet. "Damn" I said each time and took comfort from their encouragement to not give up the search for the shoe.

Prince Charming thought it was tough to find someone to wear the glass slipper. Well to hell with Cinderella, she had OTHER shoes, and shoes more practical I'm sure.

This CinderFella desperately needed footwear.

Now my soles are soled and my soul is thrilled as a result.

A New Normal

The first time that I was ever recognised, in public, by someone who had seen me lecture or by someone who had studied one of my books at college was a complete shock. I don't know why it never crossed my mind that this might happen, but it didn't. For the first few times that it did, long before I had a disability, I was always alone. I'd come home and tell Joe and would be met with a 'That's nice dear.' He won't admit it now but, then, he was having trouble believing that it was happening.

One day we were in an airport somewhere. I was coming from the bathroom back to the table in the restaurant when I was stopped by someone, a fellow passenger, who wanted to tell me that they'd enjoyed the lecture I'd done a few weeks before. Inside I was saying 'damn and blast and Joe's not here again.' When she finished I said, 'Forgive me for asking this but could we do this again at my table in the restaurant, the fellow I'm travelling with doesn't believe me when I tell him this happens.' I was lucky, she thought that a fun idea. Thus Joe learned that I am occasionally recognised by people who know my work.

Over time, of course, he's been there most often when it happens and, now, people are recognising him too. i don't want to make out that this is a daily occurrence, or even weekly, or even, really, monthly. More like four or five times a year. It happens rarely enough to be quite enjoyable and often enough to have me always thinking - someone here might know me, I'd better not be an asshole.

Something happened this holiday season that turned this experience on its head a bit. You know how when something happens one way, you don't wonder why it doesn't happen another? Well, I don't anyways. So when Joe and I were heading up Yonge Street towards Bloor, on a crowded street full of holiday shoppers, I was surprised, but not shocked, to hear my name called out, "Hey, Dave, Dave Hingsburger!" Getting about, in crowds, on a power wheelchair takes concentration so I glanced around for the source of the voice. Finally, several glances later, there he was, a young fellow, standing and grinning, waiting for me to find him in the crowd.

I made my way over to him and said 'Hello.' I recognised him but didn't remember where from. He reminded me that he had been in an abuse prevention workshop that I had taught in recent months. He was in Toronto for the day to do some shopping and to catch a movie. "I didn't know you lived here," he said. I pointed over to the area where I lived and said, "Yeah, I'm just a few blocks from here." We talked a bit about the workshop, he shook my hand and he left.

That was the first.

The second was to come only a few days later. We were in the lobby of the movie theatre, carrying popcorn and pop towards 'cinema number six' when I heard my name called again. I turned carefully in the chair, no crowds to worry about here, I just didn't want to spill the popcorn. A woman, mid fifties, was smiling and waving. She too told me that she'd been at one of my workshops and that she'd had lots of fun. She reminded me of a role play that she'd been involved in and she laughed when telling the story. It was nice.

I'm not sure why I never noticed that I was always recognised by staff and care providers as a lecturer or trainer and, thought I teach or train hundreds of people with disabilities a year, that this had never happened. Except, I now remember, a woman on a plane, travelling with her staff, coming from the same conference where I'd just presented.

I suppose, and this is what pleases me, that as we move into an era of freedom, where people with disabilities actually live life independently in the community, the range of normal experience, the very definition of normal experiences is changing. I have a 'new normal' and that's expecting that people with disabilities will be 'out there' too. For many of you this isn't a 'new normal' ... but for me, at 60, it is something incredible to behold.

Because I know and remember the many years where the idea of someone with a disability, alone on a crowded street in a strange city, was unthinkable.

My world is changing.

Some of those changes unsettle me.

Some of those changes I've longed for.

I'll let you guess what category in to which these two brief meetings fell.

Jokes

It was kind of funny to watch.

A fellow told a disability joke to another fellow. The joke teller had his back to me, the joke hearer was facing me. The joke teller was one of those people who are kind of naturally loud. At the punch line the face of the listener seemed a mass of confusion as it shifted between, 'I want to laugh because my friend told me a joke' and 'I don't want to laugh because I don't want to offend the disabled guy that's right in my view who I know heard the joke.' All this happened in a split second before I too laughed and then told Joe the joke.

Here's the joke:

A fellow is in a horrible car crash and is wheeled into the emergency room of the hospital. The doctor examines him and discovers that he's paralysed down the left side. He calls for a specialist. The specialist sticks his head in the room and says, 'What's up?' The examining doctor says, 'He's paralysed down the left side of his body, what do I tell him?' The specialist says, 'Just tell him that he'll be all right.'

Maybe I hear the joke differently than others, maybe I hear the joke differently than it's intended. What strikes me as funny is that the specialist is, for the most part, right about it being all right. Because it usually is, in the end, isn't it? I know, from my own experience, and from the experience of many others with disabilities that - once the shock is over, once the adaptation begins - it becomes 'all right, alright.'

So from where I sit today, at my computer with tasks that wait for me, with emails to answer and with phone calls to make. I fit into my own life perfectly. Like I always have. Like It thought, once, that I might never again. And, I'll tell you this, I wish that someone had told me then that it'll be 'all right' ... because, today, it feels just like that.

Sharing A Cuppa

Many voices will sing Auld Lang Syne tonight. Our local news station has just aired a programme which demonstrated that few people actually know the words, fewer still understand what they mean, but several admitted by the time they are singing it - they don't actually care much about either. I admit that I don't know the words ... and the words that I do know aren't from the original Robbie Burns poem but are, probably to the horror of the Scots, translated into English.

I remember being a kid hearing the song for the first time and asking what "Auld Lang Syne" meant and getting little in the way of an answer, something along the line of "it's just a song' and a clop across the ear for asking annoying questions. With the advent of the computer, of course, I've looked up the song and read it in translation, it's quite lovely.

There was a line in the song that captured my imagination, even as a young boy with stinging ears, that line still does the same:

"We'll drink a cup of kindness yet"

And that, dear readers, is my hope for you and your new year, me in mine and for the world in general. I hope that when it's needed, the cup of kindness will be there for you, for me, for all. I hope further that we all recognise that each of us has the capacity to offer a cup of kindness to those who need it, when they need it, no matter why they need it. We don't have to run and knock on God's door to borrow a cup of kindness, we can fill it at will, once the choice is made. And we can fill that up over and over and over again.

So, may we all share, in this coming year, a cup of kindness yet.

Hangover Resolutions

Today I will end the year by doing an interview with a radio station out in Halifax about abuse and abuse prevention. It happens near noon, so near ten, I will begin to prepare thoughts about what I'd like to say. It's a fairly long interview, by radio standards, so I want to be able to use the time well. Many people who hear me speak or hear me interviewed, either on television or radio, think that I speak 'off the cuff'. Um, no. I prepare. Each time I go on air I get this intense kind of fear of falling - so much can go wrong on a live interview. So fear and anxiousness simply leads to good preparation.

It strikes me, now, as the perfect way to end the year. Doing something that is directly about what I care about - giving people with disabilities the skills they need to live safe and powerful lives - reaching an audience of people listening and broadening ideas of what can be done and what should be done. That's a very cool 'offer.'

So today won't be spent making resolutions.

It will be spent fulfilling one.

Several years ago I made a resolution to take every interview offered me, if it's in a subject I knew something about, even if the topic is controversial.

This has led me to being interviewed by newspapers, radio and television. It's also led me to being interviewed by Bizarre Magazine in the UK and Hustler Magazine in the US. Both interviews caused my friends to shudder but I approached them as seriously as any other interview. Audience is audience and message is message. Let me tell you that the questions asked in those interviews were perhaps the most challenging I ever had to handle. But GOOD, they were being asked.

After the interview is over, I'm editing a submission to our newsletter, Service, Support and Success, which will be coming on in February - for Valentines day - and it's on reaching and supporting romance skills to people with intellectual disabilities. Enough with sex. We need to teach about romance! Intimacy! Love, baby. So, we've got a submission on that topic and it's looking good. January's issue will come out sometime early next week. So work on February begins now.

Several years ago I made a resolution to create a means of providing interesting articles, informative pieces, for direct care staff.

We in our second year now and it's going well. It's way more work than I thought it would be, Those of you that get the newsletter know that I get to work with Angie Nethercott again (hi Angie) who is the co-editor so it's nice to have someone to share the load with. Angie and I have worked together for years.  It's cool to see the response we've gotten. And it's cool to see how far it goes this little newsletter.

So, when Joe and I began to talk about resolutions, he said, 'Oh, please, no more about work.' I looked at him in surprise and he said, 'Everytime you make a resolution about work - you end up being busier than ever. Why not make resolutions that can be broken in a week or two and be over with.?'

This strikes me as wise.

I don't think I can bear any more of these resolutions that are still following me years later ... except there's one, just one, that I want to achieve next year, well it may take a couple ... I think I may be able to slip it by without Joe's noticing.

Shhhhh.

Trying to Say Goodbye To What Happened

It all happened because I wanted some cheese. Nice cheese. Expensive cheese. Applewood smoked cheddar. Brie. Danish Blue. Joe and I were choosing the cheese and, once done, I slipped it into my wheelchair bag. Then he went his way to do his part of the list, I went mine to get the stuff that was assigned to me. I picked up crackers. I picked up pumpkin loaf. I picked up bread. I picked up a bagful of stuff. Then, as we always do, Joe and I met and I transferred my stuff to his cart and then headed out of the store.

This is a store that we've shopped in at least twice a week, barring times when we are on the road of course, for five years. We have nodding acquaintance with many of the staff there, some of whom greet us by name. Our rituals are not unknown to them. I left Joe in the line up and headed off to the liquor store to pick up some beer. We were having a nice day. We had the Messiah on in the afternoon, we'd had a lovely morning doing Christmas stuff.

I picked up the beer, once again putting it in my bag as I always do. Once again in a store where we shop regularly. Once again in a place where staff know us and say hello. I turned my chair and found three people standing blocking my way. One of them, a woman, was glaring at me. She was clearly very, very, angry. I was confused. I was further confused when I recognised them as being from the grocery store that I'd just left. They followed me, FOLLOWED ME, into another store, why?? That confusion was heightened by the fact that they'd blocked me in. I get very claustrophobic in these situations. I don't think that non wheelchair users understand, even slightly, what being pinned in like that feels like. When it happens accidentally it's frightening, when it happens purposely, it's intensely threatening.  I looked at them helplessly. She glares back, arms folded over her chest, her stance aggressive.

Before I could say anything. The woman says, loudly, "Are you going to pay for the cheese you've taken from my store." I was shocked. I begin to babble. My heart is beating hard in my chest. I am an honest person. I value my reputation for being honest. I never steal! Ever. Nothing. It's one of the Commandments for heaven's sake. It's wrong. I tell her as I am fumbling in my bag to find the cheese, that I must have forgotten, or missed it when I did the transfer over to Joe LIKE I HAVE DONE HUNDREDS OF TIMES BEFORE. That I'll pay for it. She just stands there, glaring saying, "Are you going to pay for the cheese?" I keep grabbing to the bottom of my bag, trying to find the cheese. The beer cans are in the way. I can't find the cheese! I CAN'T FIND THE CHEESE.

She asks several more times.

They continue to stare at me.

Others are now staring too.

Others are now seeing me as a fat, disabled thief.

I don't think I can bear the embarrassment and the humiliation.

I am angry at myself. I should have been more careful when I transferred the stuff over. She is so sure that I've stolen that I am sure I have too. I do that. When accused of anything I immediately, at first impulse, feel guilty and apologise. I can't find the cheese.

I CAN'T FIND THE CHEESE.

Finally, as the seconds tick by, as the demand for me to produce the cheese intensifies, I am full of blind panic. I ask, helplessly as I'm shaking now, for the man she brought with her to help me get the beer out of the bag so I can produce the cheese. People everywhere are staring. He approaches to help. He's a big man. She brought him along, I don't know why, he had nothing to do with this. I recognise the other woman as being from the cheese department. He helps me get my bag empty.

There is no cheese.

I COULDN'T FIND THE CHEESE BECAUSE IT WASN'T THERE.

I've taken nothing from the store.

Guilt switches to anger. Intense anger.

I have been targeted.

Publicly accused.

Humiliated.

Shamed.

Everyone who saw what happened, the first part of the story, will not know that the accusation was groundless. That I had been followed from one store into another and falsely accused. I will always be a thief in their eyes. She stole from me my reputation, yet I am considered a thief.

Before continuing, I need to tell you that I value my reputation. Like everyone does. But, for me, I know that people make assumptions about me because of my weight, because of my disability. I know that I belong to a visual minority which is subject to prejudice and stereotyping. I know that we are often seen as benefit gobbling, non contributing, scum. I know that there are those who believe that's we'd be better off dead. I do what I can, in my own little way, to try to demonstrate that not only do I have a good quality of life, I also have qualities that I bring to my life and to the lives of others. Those who know me, know that I strive to be a decent, honest, caring man. I may fail from time to time, but I do strive to be the kind of guy that people think is a 'straight up dude.' So losing that reputation costs me. Hurts me. Deeply. And ... as it turns out, angers me beyond belief.

I am outraged.

I point at her and tell her, loudly, that she has falsely accused me.

She DENIES IT.

She said, "I never accused you of anything."

Then she says, "You weren't even sure if the cheese was in your bag."

I don't have to be sure.SHE DOES. I demand that she accompany me to the store, find Joe and see that the cheese is with him and being paid for. She and her gang flee the store. I have to make my way out. The beer is left on the shelf where it was placed when I was trying to find the non-existent stolen cheese. It takes a few minutes as the aisles are full of Christmas displays. I find her and her cabal at the bottom of the escalator just outside the store. I demand she come with me.

I see Joe. Standing innocently in a long line. I shout to him, "This woman has accused me of shoplifting the cheese, show her the cheese!!"

She leaves me and goes to him. Joe, looking shell shocked, shows her the cheese. I see her talking rapidly to him. I find out later that to him, TO HIM, she is apologising. She has yet to apologise to me! She comes back to me. We have further words. I tell her that what she has done is reprehensible. I accuse her of targeting me, at least partially, because I have a disability. That she was operating on stereotype. I find out later, after she protests to me, that she has said to Joe, "this has nothing to do with his disability." At the point she is speaking to him, I had not raised the issue of my disability. She did.

I tell her that she can expect a report, I want the name of the owner of the store. She is the store owner. Then I ask for a contact for the  franchise, even owners have someone above them. She gives me her card.

Joe then joins me and we leave the store. I write a letter of outrage and protest as soon as I get home. It is sent to the corporate body of the franchise chain. I copy her, That begins another saga that is yet to be finished.

Here's the thing.

I can't shake this.

Those moments in the store, being blocked in, being accused, pleading for understanding, being stared at by others, desperately digging in my bag, seeing this big man brought along, now I understand, for intimidation approach me to take stuff out of my bag, keep replaying in my mind. The faces of those other customers, those employees of the other store, who stopped to watch, to have their prejudices confirmed, I can still see.

I am deeply hurt.

Damaged even.

I have trouble going back to that mall. A place I've always felt safe and even welcomed. A place where, until then, I had a good reputation with the clerks, even the security people say hello. This entered into my afternoon at the concert, my Christmas itself. I had to keep forcing it away.

Normally I am better at shaking off these things. You have to be when you are different. But I think it's easier to brush off judgements made based on what I look like rather than those that are made about who I am. I think, too, that my reputation is something I deeply value - I always knew that, but I didn't know how big a deal that is to me.

It's big.

Really big.

I'm telling you all this now because I've decided that I don't want to take this into the new year. I want to leave it behind. While I will still have to deal with this next year, I still have an active complaint to process, I want this out of my head. One of the best ways I have of doing this is taking what is going on in my mind and putting it on paper.

I normally don't ask favours of you, as my readers. But I am going to now, I do want comments on this blog post, but please try to refrain from telling me what I should or shouldn't feel, what I should or shouldn't have done, why it's not a big deal, don't tell me how you would have handled it better or give me advice about it at all. I'm really not strong enough for those things at the moment. Please too, if you know where this is or the store I am referring to, please don't contact them on my behalf, I fight my own battles. What I hope from this is simply support. Sometimes that's all that people want.

For me, that's what I need.

He's Got Five!!

Someone once said that a wheelchair is a magnet for social inappropriateness. I've always thought that true. Here's the most recent example:

Joe had something to do down at the Eaton Centre and I decided that I'd like to go along for the ride. It was bitterly cold out and we'd forgotten to charge the battery on my chair so we decided that we'd subway down and walk back - if the battery was holding out OK. So we made our way over to the Bloor subway stop and hopped on the train. It was busy, being the holidays, but we were surprised to be able to get on without any problem. Often we have to wait a train or two to before there's enough space for me to get on with the chair.

I got on and swung round backing into place. Joe sat on the chair next to me and the train left. Two stops south, near the College stop, the train began to slow. A fellow got up and headed over towards us. He announces, quite loudly, that I can't get off at College because it's not accessible. Now, I know that. But he wasn't really telling me, he was letting everyone know that he knew about which stops were accessible and which were not.

Then, he leaned past me to be able to talk to Joe and said, "I know because I've got five of these myself." When saying this he had his hand over my head pointing down at me. "Five! I've got five wheelchairs" he continued, "so I know."

I turned to Joe and said, "And you only have one."

My remark struck me, alone, as really funny, and I started to laugh. The train was now stopped and he got off looking a bit discombobulated at my laughter. It was so absurd as to be ridiculously funny.

Everyone on the train around me looked mightily uncomfortable on our ride to the next stop where we disembarked. I don't know if they were uncomfortable because of what he said, because of what I said, or because I was kind of giggling for that part of the ride.

Just before we got off, Joe, who had been shell shocked by the weirdness of the interchange, had gathered himself enough for a response.

"I may only have one, but I'm betting mine's bigger." I had to stop, once off and dry my face.

Sometimes laughter is the only response possible.

Snow Angels Redux

Toronto got it's first real winter storm yesterday and though there wasn't enough to call out the army, there was indeed enough. Joe told me, on returning from helping carry out stuff to their car that Ruby and Sadie that they threw themselves on the lawn out back and immediately made snow angels. I told Joe that I wanted to go out for a bit and asked if he'd come with me, I get a bit claustrophobic after one whole day in and after two ... really need to get out. We decided to head over to the Bay and see what's up with Boxing Day sales. I had noticed a really nice sweater on one of the mannequins there before Christmas, I thought it would look great on Joe and when I went to pick it up discovered it cost just under 300 dollars. Way too rich for our lifestyle, maybe Boxing day would bring it into range, say if they had a 83 percent off sale.

We left the building by the back doors because we had recycling to drop off. As we left the lane way behind the building I noticed that the snow hadn't been removed from the curb cut and the way to the road was completely impassible. What with this being our first winter storm here this year and what with the fact that we didn't have one last year, I'd forgotten about snow and it's effect on accessibility. I made my way up to the next corner on the sidewalk, which had been shovelled, and it too was impassible. The driveway to the building is a circular one and the first curb cut was clogged with snow. Joe suggested I make my way around the drive to the far entrance as he walked on the sidewalk and we'd meet and check out the final possible way out.

As I made my way along the drive I looked over and saw Joe trudging along the sidewalk and behind him, by about 15 feet another fellow equally bundled up against the snow and cold. I got there before Joe did and, though it was clogged with snow too, there did look to be a passageway that I could at least attempt. I learned, a few years back, that I had to think about both getting out and getting back, that getting DOWN a snowy curb cut was very different than getting UP one. I thought this one would be passable each way. Joe joined me and I told him I'd try here. I waited seeing the other fellow coming as I decided to try this without an audience. He saw me waiting, seemed to know what I was doing and sped up his pace.

As he passed  by he said, "It must be really frustrating when people don't clear paths for EVERYone." I nodded in dumb shock at the fact that he understood so easily. Then he said, "Good luck and Happy New Year, eh." I called out 'Happy New Year to you too." Then, I slid down the curb cut and on to the road and we were off.

We went over to Yonge Street, knowing that the curbs there would be passable, if not because of being shovelled, then because of the high volume of foot traffic. A block or two later we talked about that brief, tiny, interchange. About how pleasant and kind that fellow had been. About how easy it is to do something, small, that has such an enormous effect. Both of us agreed that his friendly tone and his willingness to pass along good cheer had made a positive impact on our day.

Something so simple.

Something so easy to give.

He'll never know that I've had a tough few days. He'll never know that at that moment I was beginning to allow frustration to turn to despair as my sense of humour and my sense of proportion has been dulled. He'll never know that a couple of kind words made the world of difference to me.

But they did.

Ruby and Sadie love making Snow Angels. I love, when it happens, meeting them.

The Girls and an Update

It's been a difficult season for me this year. On the 23rd I was victim of a pretty serious attack on my character that was public, completely uncalled for and horribly humiliating. Since then I have had a great deal of difficulty enjoying the season. I love Christmas and wait for it with bated breath but this season that train got pushed off the rails pretty forcefully. Luckily, in terms of this blog I  had written the Christmas Eve post, Christmas and the Magic tree, a week or two ago so I had a post written, while anticipating happily the big day. I had written about going to Roy Thomson hall on the morning of the 23rd and, after the Messiah, I wanted to focus on how well the staff at the Hall did at welcoming us, and others with disabilities - I didn't want to write about the fact that I had been traumatised hours earlier and as a result had a very difficult time being there and found it even more difficult enjoying the music.

I used the picture I took of Joe for a blog post on Boxing day after I tried and failed to write a bit about the day. I just couldn't find either the will or the energy. I'm writing this today to tell you, as much as I find myself able to, about where I am right now and how it might affect my blogging here at Rolling Around In My Head.

On Boxing Day, itself, Marissa and Ruby and Sadie came down to spend the day with us. The kids were staying the night because their mom was going from dinner here directly to work. They rushed through the door, driven, I hope by the excitement of seeing me as well as the undeniable draw of unopened presents. It wasn't long before presents were being ripped open, and as much as we tried to put a bit of organisation to the chaos, it was delightful chaos.

Clothes and toys and books and DVDs and CDS were unwrapped, examined for a millisecond before another was grabbed. There was paper and presents everywhere. Ruby and Sadie both pulled me, firmly, out of myself and suddenly, Christmas was here. I am not one of those who say that 'children make Christmas' ... or 'children show you the joy of Christmas' ... I don't believe that. Joe and I usually manage a perfectly wonderful and perfectly joyful Christmas all on our own. What children can do, and do well, is take up so much room in your heart and mind and soul that there isn't space for the intruding thoughts of hurt.

When Marissa left I told her that the girls were, without question, the best gift I received this year. Marissa knows what happened to me, and knows that I'm having a rough go of it, fighting tears and pushing back a sense of bleakness is hard work and she knew how deeply I needed a break from all that. I wanted her to know that her visit complete with children and chaos and watching her put together a DVD rack, their families gift to us, complete with 17 thousand pieces, while the kids tried to play fort in it, was good for me. Really good.

Near the end of the evening I was curled up on the couch covered in blankets, Ruby and Sadie each got a blanket and came and joined me. We watched a DVD set we purchased for the kids and waited for them, one by one, to fall asleep. Sadie went first, crashing into sleep about half an hour in. Ruby was intent on watching the DVD and got drowsy but didn't fall asleep. When she asked for one more episode, we told her that we'd gotten a new book to be read when they went to bed.

Joe went and got the book and handed it to her so she could look at it, she held it in front of her, looking intently at the cover, "If," she said, her voice slowly growing confident," You Give A Mouse A Cookie ..." Then she turned the pages and found the first page of the book. For the next five minutes we sat there as Ruby read several pages the book aloud to both of us. She looked up and said, "... OK, you can read the rest." We both knew how much Ruby wanted to be able to read as she's been talking about wishing she could read since she was barely three. She has names down and can write all of our names and can recognise every letter of the alphabet, she's had that for years. But reading was always just out of reach until now.

Sitting listening to her read to Joe and I, I had this sense of peace and joy, that has been missing from the season. It was wonderful. Right now, though, as I type this, the girls are asleep in their bed and I am here at the computer, trying to write this while thinking about 'that which happened.' Writing anything, it seems, is hard.

So, dear readers, I am going to continue to try to write a daily blog, I have to deal with what happened, and I don't think right now, going public with it would be wise. I need to consider what my options are, and I need to find a way to move past what happened. It's like I've been hurt in a deep and profound way and, though I'm used to, as much as one gets used to, the prejudices that come towards those of us with disabilities or those of us who are fat - I always had something that was much more important to me that the superficiality of the judgements that came from appearance - I had me, and I know who I am.

But my 'me' was attacked and has been bruised.

I am damaged in some profound way right now.

So forgive me if the next few days or weeks, my writing suffers because of it. But I'll try, I am committed to this blog and to those who come here faithfully and will try to meet those commitments.

Picture

Joe, on Christmas Eve, watching Alistair Sim in A Christmas Carol.

If a picture be worth a 1000 words, then this is my life in a book.

Christmas and The Wishing Tree

This is the wishing tree. It sits at the northeast corner of Yonge and Bloor, just a couple of streets from us. It first went up, in celebration of the Christmas season, last year. And immediately upon seeing it, Ruby's heart was captured. She could stand for hours just looking at it. Once she spent almost fifteen minutes slowly walking around it, looking up at the branches in awe, absolute wonder. When I'm giving her a lift in my wheelchair she likes me to rush ahead so that we can have the maximum amount of time at the tree as we wait for the others to catch up.

I don't know how but suddenly, in her mind, the tree became a holy place to her. She approaches it, reaches up and touches it, and closes her eyes. The first time she did this she looked from the tree to me and said, making an announcement, "This is the Wishing Tree." She noticed, once, that I always watched her wish but never did so myself. She levelled her gaze to me and asked, "Dave, why don't you ever make a wish." I was feeling a bit tired, and said, "Oh, Ruby, I'm a bit old and I don't remember how to make wishes like you do."

She said, not noticing that my eyes were glistening, "It's easy," and took my hand and placed it on the tree, "now close your eyes and wish for something you really, really, want." I did as she asked, realising that I don't think I've made a wish in a very long time. I use the word, "oh, I wish he would just shut up," or "oh, I wish this line would move faster," or "oh, I wish I didn't have to pee right now." But a true, deep down wish, that I haven't done in a really, really, really, long time.

She watched me make a wish.

"Wasn't that fun?"

I told her that it was because it was.

She asked me what I'd wished for and I explained to her that I couldn't tell her because that meant it wouldn't come true. She listened, thought for a second and said, "I don't think that wishes come with rules." Even so, she accepted with ease the fact that I'd kept my wish secret. And even though I suddenly wanted to tell her, I didn't.

On our way home from the Messiah, humming, 'For unto us a child is born' I stopped at the wishing tree. I put my hand on it just like I'd been taught. My first wish, yes, I'm telling you because wishes don't have rules. I think the little anarchist is right, was that Ruby's wishes at the wishing tree come true.

And I think, maybe they will.

A couple mornings ago, I was up early, Ruby was the next one up. She came quietly into the den where I have my computer set up, she likes to surprise (scare) us and, she stopped and watched, I did not know that she was there - as I had my head bowed in prayer. As I prayed I felt two arms reach around me and give me a hug. I smiled at her and hugged her back. "Were you wishing?" she asked, and I said, "No, I was praying."

"I thought so," she said,

"Why?"

"Because it looked like God was hugging you."

It's Christmas.

May you make many wishes.

May God hug you when you most need it.

Decisions

(photo description: a very blurry photograph of the Toronto Mendelssohn Choir and the Toronto Symphony Orchestra, all wearing formal black and white attire. Choir is seated in several rows and the orchestra is seated in front.)

It was a hard decision.

When I make complaint regarding something to do with access or attitudes to a company I am often offered some kind of compensation, a gift, for my 'inconvienience.' I mostly refuse these offers. I want them to understand that I am complaining with the goal of 'change' not with the goal of 'gain'. Part of me believes that as soon as I take what's offered, I'm written off and my complaint is seen as just a little more frivolous. Part of me also believes I need to stay focused on inciting change and change doesn't come in a gift box. So, with rare exceptions, I don't take up offers of personal reparation.

Today is a rare exception.

Last year I wrote a blog about my visit to the Roy Thomson Hall to see Handel's Messiah. It hadn't been a good experience. As a result of that blog I had several conversations, all productive, with representatives of the various parties involved. I ended up being satisfied that my concerns were taken seriously and that there was a real desire to improve the experience of people with disabilities as customers and patrons. More than that I felt that the people I spoke to really, really, wanted me to trust that they would continue to work on the issue of accessibility of space and of face. They offered me the opportunity to attend another event in the Hall put on by the Toronto Symphony Orchestra as a gift from them. I told them that I don't complain for tickets, they assured me they understood that. I said I'd think about it, knowing that I wouldn't, knowing that they knew I wouldn't but that it would be a nice way out of the stand off.

Then a few weeks ago, out of the blue, we got a phone call, inviting us to come back to see the Messiah again this year, for free. I was astonished that the incident last year was remembered and that we were being offered the opportunity to go again. Joe and I talked about it and, as so much time had passed, we could only see this as a kind gesture by people wanting some kind of closure to the events of the year before. We talked about it more and I realised that my experience last year really diminished my enjoyment of the afternoon and that I'd like to have a different memory of attending one of our two favourite Christmas oratorios. We agreed.

I am writing this the morning before we are heading out to attend the event. I am relaxed and looking forward to going. You see, I believed that everyone I talked to last year was sincere about their desire to make change. I believed that my voice had been heard. I am looking forward to going. I am looking forward to being there with Joe. I really enjoy the music and the emotions that well up in me when I hear the Messiah performed. But I really love being there with Joe who really, deeply, loves this music. It's something that we share together.

So, we're going.

It was a hard decision to make to take the tickets. But now it's made, we're excited. What a great way to spend the last Sunday afternoon before Christmas. What a great way to begin the move from the shopping, the wrapping, the decorating, the cards and the calls ... to the deeper meaning of Christmas - beyond 'family' and 'good times' and 'winter wonderlands' - but to 'For unto us ...'

 ***

OK, that was written before going.

Now you are all wondering, "OK, what happened?"

Well, actually a lot.

There wasn't a single negative incident, it was a muss and fuss free 'Messiah.' But what I do want to note is how incredible the staff of the hall were with everyone, including people with disabilities. I noticed an usher notice an elderly woman standing near the door, obviously having some difficulty. All the chairs provided for seating were taken. The usher disappeared and moments later reappeared with a chair. She offered it to the woman who took it gratefully. Several other incidents of what could be categorised as either exceptional customer service or simple and lovely kindness happened all around me. It was truly wonderful to see.

I promise you, and those of you who know me at all well would know, the ticket being free had nothing to do with my opinion of what I saw.

I'm glad I went.

I now have a new memory to replace the old.

And, even better, I now have another venue where I can go without worry.

Can you all say ... (yes, I'm going to do it) ... hallelujah!

Stories Told

Two stories appeared this week, in papers across Canada, about the mistreatment of people with disabilities in group homes here in Ontario. One story begins with an interview with David White the other, quite different story leads with an interview with Lisette Lanthier, both of whom are self advocates with disabilities. While I am not going to, in this post, discuss the content of the articles by Michael Tutton, as I believe they speak for themselves and are compelling reading enough without my having to comment on them. I will say here, what I told Mr. Tutton personally, stories like these, written by a watchful and questioning media are part of the solution. The media needs to take interest in what happens behind the closed doors of service systems, the media needs to take the responsibility of watchdog seriously. There are many things that we can do as parents and service providers to prevent abuse, but a watchful media has an important role in ensuring that what we say we do, we do. But what I really want to talk about is the amazing inclusion of the voices of people with disabilities in a story about the lives and experiences of people with disabilities.

Stories like these tend, or have tended, to focus on the voice of experts, all without disabilities, in the field of disabilities. It's like there has always been a subtle agreement that people who have the lived experience of having disabilities are so busy being disabled that they haven't had the time or, if they did, the capacity for understanding their own lives. As you will see from one of the stories, I am interviewed, so I knew that the stories were being written, moreover, I knew that Mr. Tutton was planning on interviewing people with disabilities for the piece. I was beyond pleased when he told me that he was planning on moving past the experts to speak to the experts.

I happen to know both David White and Lisette Lanthier and I was absolutely pleased and thrilled that these two remarkable people were going to have the opportunity to find an audience for their views. I do not call either of them remarkable for any reason pertaining to their disability. I find that kind of 'pumping up' objectionable. I say 'remarkable' because of their ability, each of them, to speak their minds clearly and express themselves thoughtfully. If you watch interviews of people in the street or politicians, being able to speak plainly and cogently is indeed remarkable. Anyways, each piece leads with their interview. In doing so Mr. Tutton gives a sense of the gravity of the mistreatment of which he writes. This is something that happens to the Davids and the Lisettes all around the world, people who are people who live within care systems.

It wasn't long ago when people with intellectual disabilities weren't allowed to have names, or to have identities, let alone being given space to have voices. I imagine still there are places where people with disabilities would not be allowed to comment on stories like the ones just written. Lisette and David are at the leading edge of people with disabilities who are willing and able to speak about their lived experiences as people with disabilities. Up until now people with intellectual disabilities have been allowed opportunity only to tell one kind of story - the kind that inspires others, about achievement or about dreams fulfilled. Those stories are important, they too are part of the experience of disability. But so too are stories about abuse and mistreatment and bullying. So too are commentaries on the service system and how it needs to change. So too is the need for justice and the right to respectful treatment in the community.

Lisette and David appear, pictures and all, proudly public and confidently outspoken about their views. Behind these two people are families and service agencies who have worked to ensure that 'voice' and 'choice' are part of the real lived experience of those with disabilities. The decision to speak or not to speak rested with each of them. They are there because, ultimately, they decided to be there. Others moved out of their way and handed the microphone over, at last, to those whose lives had been lived in shadows and their voices hushed away into silence.

No more.

Thank God.

No more.

It Didn't End

The world didn't end.

They thought it would, but it didn't.

The proclamations of those believing that Dec 21st would see the end of the world echos another recent prediction by an American Evangelist that the world would end on May 21st of last year. In both situations thousands of people bought in to the 'end time' scenario and were caught short by the fact that the world simply went on.

The world didn't end.

They thought it would, but it didn't.

A few days ago I spoke with a man, a fellow rider on WheelTrans, off to the gym for a morning workout. He was in his seventh year of being disabled. He rides a souped up scooter and talked, animatedly with the friend he was travelling with about his morning workout and the upcoming trials for a high level wheelchair sports team. "I thought my world had ended," he said.

There is a woman in my apartment building who I see sometimes waiting for a taxi. In good weather she sits on the bench outside. In the rain or in the cold, she sits on one of the couches in the lobby. We spoke one day while I was waiting for Joe to bring the car around and she was waiting her regular cab driver. She told me patting her walker with real affection that when she was injured and was told that she'd always need some kind of mobility devise to get around that, "I thought my world had ended." It hadn't. It had changed, but it hadn't ended.

When I made my first ride in my wheelchair, something I've described here before, I was simply pleased to be out of Intensive Care and into the hallway and on my way to the coffee shop. One of the doctors, later in my room, said, "Well, the world as you knew it has ended." For a moment there was a crushing fear in my heart. For a moment, I believed her. But my world hadn't ended.

Some thought the world would end for all. Some of us think that it is our world that has ended. That disability is a cataclysmic event. That disability is normality's apocalypse. That disability is the cruelest kind of torment - it leaves it's victim in a world ended, living in a world that simply goes on. Those like the man on the bus, like the woman in my lobby, like me looking up at a doctors face, wearing a shaman's mask, telling me that my world was over.

The world didn't end.

We thought that it would, but it didn't.

I have a friend, an email buddy, who has a child with a fairly significant disability. She has been blazingly honest with me about her first reaction to the news that her child was born with a disability. "I thought my world had ended," she has said often. Now when she says it she says it with a kind of self mocking tone, a 'how could I have thought such a thing' incredulity enters her voice. Her child with a disability is her youngest of three - and she has now what she had then. A life full to the brim, a family, a job, a marriage.

The world didn't end.

She thought it would, but it didn't.

Tomorrow does what it tends to do ... no matter what prophets and doctors and fears tell us. Tomorrow stubbornly comes. And it brings with it what no one expects - hope.