Blog Business (Todays Post Next But One)

Some of you who comment are wondering about the new comment moderation on the blog. I've been threatened by a cyber bully who, early one morning, started posting horrid comments aimed at me and and various of you. I'll let any comment, pretty much, publish, but not random hatefulness. I caught this just moments after it started to happen. Nipped it in the bud. So, for the next while, I'm moderating the comments. Sorry for the inconvenience but hopefully she'll go away after a few frustrated tries.

Blog Business (today's post follows)

Book Club Announcement

The book club will be held on June 30th

We, if you all remembered, will be reading 'The Thousand Autumns of Jacob De Zoet' ... this is a difficult read as much of what is presented regarding the treatment of women with disabilities is horrific. Yet, there is much to be discussed here. Here's how it works:

On that day I will publish a post regarding the book and it's disability theme. You can either comment here about your reaction to the book or write your own post for your blog and link in the comments so readers can go round the web reading reactions.

All books chosen for the book club are mainstream books that have disability as a theme.

(Today's post follows)

Being A 'No It All'

We'd bought the kids some clothes and Ruby was intent on trying everything on. The word 'No' was forming on my lips and I had to shove hard to get it out of my mouth, even if it didn't leave my mind. True, it would make a mess of the hotel room, taking everything out, paper, pins and all. True, it would demand a lot of attention as she went into the bathroom to change and then come out to model for all of us. True, it would distract us all from more adult catching up. True. True. True. But none of those is a reason to say, 'No'.

The adult/child relationship is power based. Some of that power is reasonable - adults make better and safer decisions (at least in theory). Adults need to ensure that they have a bit of instructional control or everything will be chaos. But, in reality, there is are very few times when the word 'no' is needed. 'Yes, later,' is most often what parents mean by 'no'. However, I've discovered, maybe rediscovered, that sometimes I want to say 'no' because I can. Simply as an exercise of my power and control.

Yikes.

Further, a child that is disobedient to an adult's 'no' is a problem child - not a child dealing with a problem in power.

Double yikes.

I heard a staff say once, about someone with a disability, 'He likes to get into power struggles with staff.' Annoyance greeted my sentiment, then, that there are only power struggles when power has been used. What we mean by 'power struggle' is most often either 'didn't do what I said' or 'didn't heed my opinion'. Sometimes power struggles aren't anything more than a reasonable reaction to an unreasonable person.

Tyrants only respond to power offered in opposition.

Triple yikes.

I found myself constantly swallowing 'nos' ... constantly fighting the urge to have an opinion on something that didn't matter. I kept asking myself, why do I care so much about something that REALLY DOESN'T MATTER. I was exhausted at the end of the day, partly because of the physical activity involved in caring for children and partly because I was constantly wrestling power out of my hands and stifling commands from my mouth.

Quadruple yikes.

I thought back to my time as a front line staff.

I was hired into my first job. They threw me into a power based relationship with people with disabilities without ever ONCE talking to me about power. It was like they injected power directly into my veins, making me the worst kind of addict - craving it's use. And because I was good at it, I got made a behaviour therapist. OH. MY. I wrote compliance programmes which ensured that people did as they were told, and did it quickly.

I got off the addiction to power after a particularly memorable moment: something that lead me to write 'Mourning Has Broken,' a piece that changed my life. I learned things about myself that weren't pretty, but I think were pretty normal. Power is addictive. Power corrupts. Power makes mean. Why would I be exempt from any of these rules.

Why would any parent?

Power ends up making a fussy, old, fat guy in a wheelchair thinking he has a right to say 'no' to an excited child who wants to pull clothes out of a bag and try them on.

There is a greater power. Greater than the one with the desire to control others. It's the one with the desire to control ourselves.

And I did.

At the end of the evening I got hugs from both kids. Ruby thanked us both for our presents and then stopped and said, almost to herself ... 'I had fun.' I thought that fine reward for the war that went on in my head. When she left I surprised Joe by shaking my head back and forth and spewing out the word 'no' over and over again'.

Nononononononononononono.

He asked what I was doing, I told him that I'd been stuffing back all the 'nos' that I wanted to say, all the silly meaningless nos, and now I was letting them out.

He laughed and then shook his head saying: nononononononononononono

I guess it's a universal thing between adults and kids.

Between staff and people with disabilities.

Between bosses and employees.

Between the powerful and the powerless.

Power, noticed, is power that can be controlled. Or at least that's my hope.

Trust: A Sadie Story

The 'a' in Dave was drawn out but the word was distinct. Then, quickly following that success was 'Oe'. Sadie, Ruby's little sister, had just said our names for the first time. It was an incredible feeling, like we were called into being with the breath that had formed the words. Sadie clapped her hands with excitement, there were two new words in her vocabulary. Other than 'ma ma' and 'da da' we were the first people she put names to ... that's a very, very, nice thing.

Sadie is very different from her sister. Ruby was born to interact with the world and the people in it. Sadie, watches the world and experiments with the people in it much more carefully. She does not seek out people and their approval very often and lets people in with great care. Even now, she comes to us very cautiously and spends very little time wanting to be held or touched in any way. We've had to learn to show her affection and caring in ways that she accepted. We both knew not to feel rebuffed by her distance, she's a cautious kid and in many ways that's a really good thing. We both knew that she would form attachment to us in her own way and her own time. This trip seemed to be the time. She sought Joe out to put on her shoes, something she hates, and sat quietly allowing him to help her. A mammoth act of trust. Later the same day, she sought me out to climb on and to play 'try to stick the soother in Dave's mouth' ... a game she found very, very, funny. It was terrific.

There is a difference between trust and compliance, there is also a difference between trust and necessity. This is something I understand both as a service provider and as a person with a disability. Because we provide service to a person with a disability does not mean that the family trusts us - we provide most often out of necessity rather than desire. Because a person with a disability answers a personal question does not mean that they trust us - many times people with disabilities engage in trusting behaviour, as separate from trust, because they've been taught to, not because they want to. These are different things.

Trust is earned.

Trust is never given freely.

Trust is at the foundation of both friendship and love.

I remember watching a documentary about gay relationships and they asked a young gay man his definition of 'love' ... he answered by saying that, to him, love was 'a combination of lust and trust'. I thought that was much more profound than it seemed at first. Indeed, I believe that he got at lot right in that answer. I too, believe, that more marriages are destroyed because, not because of a loss of the former, but because of a loss of the latter. It's a powerful thing trust.

I realized in the moment that Sadie reached up to play 'put the soother ...' with me, me Dave, me a person with a name, that it meant something bigger than any other interaction that had happened previously. Now I was not an anonymous person in her life, I'm a person with a name. A person who can now be held accountable for my actions. A person that can be called to task for any violation of trust, any purposeful hurt. Of course my desire is to always be worthy of trust, always be careful in my interactions. But now, I can be named. I can be held accountable.

Sadie reminded me, again, in a concrete way of the powerful role that care providers ... parental or rental, that people have in the lives of others. We are placed into their lives to provide a service that works best when trust is earned. I remember the first time I was assisting someone with dressing and they said, afterwards, 'Thanks, Dave' that I had been named. That I was in a relationship wherein my actions could be attached to my name, that my reputation was attached to my actions and that, ultimately, my reputation would be all I had at the end of days. I wonder how many 'moms' and how many 'dads,' who desperately wait for their baby to say their names, realize the implications that come with being named. I hope they all do. I hope we all do.

All Sadie had said was 'Dave', all she had done was reach out for me, and suddenly, the world changed.

When it's right to be nice: A Ruby Story

Ruby was sitting in the driver's seat, pretending to drive. She was making that 'vroom, vroom' sound that kids make, the one that's cute for about 106 seconds and then begins to fall through the various gradients of annoyance to 'would you stop that!!' I've determined to be endlessly patient with the kids so I stifled my natural impulse to silence her enthusiastic recreation of the sound of an engine roaring. Diverting myself I realized that we hadn't called Tessa yet. We call every day when we are away and can't visit. Only once a day, at her request, for a few minutes. Both to let her know she is being thought of and to reassure ourselves that she is still just a phone call away.

I asked Ruby if she remembered Tessa, she stopped and thought a second and then nodded her head. Speaking would stall the engine, I guess. I told her that Tessa was sick and in the hospital and that I was going to call her. Ruby usually likes speaking on the phone so I asked her if she'd like to speak to Tessa. She shook her head, 'no' .. that engine was never going to run out of gas. I looked disappointed and she immediately responded, she's sensitive to a fault, 'Do you want me to talk to her?' I told her that I thought it would cheer Tessa up. She didn't hesitate, 'And can I keep driving the car after?' I told her that she could. She nodded.

The phone rang only a couple of times and Tessa's voice came on saying, 'Hello, gentlemen,' as is her habit. I told her that it was only one gentleman at this time because Joe was in picking up take out Chinese, but that I had someone who wanted to talk to her. I handed the phone to Ruby and I sat there and listened as she responded to Tessa with single word answers. 'yes,' 'no,' 'uh huh.' Then, suddenly she launched into a long monologue about being in the car and waiting for the food and that she had a sister named Sadie who was in the other car because she wasn't old enough to ride in Dave and Joe's car and how her sister would want to say hi too and that Ruby could say hi to her sister for Tessa if Tessa wanted. Whew, she's never said that much to me on the phone! After listening to Tessa for a second, she passed the phone over to me. Tessa came on saying, 'How sweet was that?' She was clearly cheered by her conversation and a few minutes later I could tell she was tired and rang off.

I told Ruby that it was really nice of her to stop playing and to talk to Tessa. I should have noticed a bit of a cloud cross over her face when I said this, but I didn't really pay attention to it at the time. Later I told her mom, and then even later her dad, about what had happened and how nice Ruby had been. First Marissa and then Mike had said to her, 'That was really nice of you Ruby.' She usually glows with praise but she didn't, which struck me as odd, it was only then that I remembered that little darkening of her brow when I first praised her.

Much, much, later, Ruby was sitting on my lap and she was in the mood to talk. She caught me off guard when she said 'Some things are right and some things are wrong.' I agreed with her that this was true. Ruby has a fine sense of right and wrong, sometimes in odd areas - she is a firm believer in the fact that little girls named Ruby should wear dresses, to her that is 'right' and anything else is 'wrong'.  'What are you thinking about?' I asked her.

She said, 'I didn't like it when you said I was nice for talking on the phone to your friend in the hospital.' I told her that I had noticed that she didn't like it, 'Why not?' I asked. She said, 'I wasn't being nice, I didn't want to talk on the phone, I wanted to play.' I nodded that I was understanding, 'I talked on the phone because it was right to talk to someone who's sick and maybe lonely in a hospital.' I was confused, 'But that's a nice thing to do.' She firmly disagreed, insisting that nice was nice and right was right. People should do what's right but that doesn't make what they do nice.

Beyond thinking, 'Who is this kid?' I began thinking about what she said. Indeed I puzzled and puzzled until my puzzler was sore. Surely it's 'nice' to do what's right? Or is it? Shouldn't we all be ready to give up time to speak to someone who needs our attention. Well, in fact, I notice that lots of people on Tessa's ward seem to have very little in the way of company, very little in the way of attention. I notice that many people find it easier to 'make nasty rather than make nice'. So maybe we live in a world where people just being decent are somehow transfigured into people who are especially nice. Maybe we live in a world where giving time is so exceptional that it has to be canonized. Maybe we live in a world where little girls understand the difference between 'nice' and 'right' and the difference between 'good' and 'decent' but the rest of us do not.

The next day, driving home, we called Tessa and she said that talking to Ruby had cheered her whole day. She asked me to tell Ruby that and I said that I would. And I will but I think Ruby already knows.

And when we visit Tessa, in just a few hours, we have with us a butterfly professionally coloured by a little girl who wears dresses, loves to swim, and is addicted to telling the truth.

Hectoring Hector

He closed the book cover and we were off.

Joe and I are avid readers and, our habit is that I read a book first, he reads it second, then we talk about it if it's deemed as a 'discussable' book. Some books are just 'did you like it' books. Some are, 'what did you think about it' books. Jake Arnott's 'The Devil's Paintbrush' was one that I couldn't wait for him to read as I wanted to know what he thought about it. The book is a fictionalized history of two real men, who really met, who lived huge lives, one wildly eccentric, the other wildly tragic.

Aliester Crowly and Major General Sir Hector MacDonald are unlikely chums for one night in Paris. Major General MacDonald is there, in exile, considering his fall from grace and his upcoming court martial. He was known as 'Fighting Mac' and was famous for his skill and bravery. However his private life, from his 'wife' and child ... who lived in hiding and shame, to his constant struggle against his 'private nature' was never easy. His eventual exposure as a 'homosexual' (the term and the concept of 'gay' did not exist then) led to a disastrous and public downfall. A man who had served his country well, had saved the lives of thousands of troops, who had military genius that came from caring for his men, was destroyed because he loved men.

As we talked about the story, I said something that stunned me. 'His life was ruined by his sexuality.' It was out and said before I understood what I had said. His life, of course, was not destroyed by his sexuality, it was destroyed by prejudice and bigotry and pure simple hatred. It was just so easy to slide the blame over to him, the victim of outrageous injustice, to make his sexuality the issue. It's easier to blame a person than to blame a society. It's easier to find damnation in difference rather than condemnation in conventionality. It's just easier.

It happens all the time.

To every minority.

No wonder, at dark moments, people hate themselves and their difference. No wonder in dark times, people wish themselves different.

I am a proud wheelchair user. I like the fact that I live a well travelled and busy life on wheels. I like it. But are there moments where I think 'why the fuck do I have to be in a wheelchair', yeah. Cause it's easier to blame the wheelchair than it is to blame the freaking, fracking, fragglehound that designed something to be inaccessible or the society that would hire that freaking, fracking, fraggelhound to design something that excludes. Way easier. I'm there after all. They never are. I'm real. They seem to be somehow an invisible evil. So the choice is to hate yourself or to become hateful and distrustful of society. In this case, and maybe only in this case, it's easier to hit the smaller target. So I say, and worse, think: why am I in a wheelchair, rather than: why does prejudice and privilege get to decide where I go.

It's easier to say: His life was ruined by sexuality.

It's easier to say: Her life was ruined by disability.

It's easier to make a lie truth, than to tell the truth to liars.

And the truth is, Major General Sir Hector MacDonald's life lay in tatters around him, not because of his sexuality, but because of bigots.

And the truth is, disability never ruins a life - but prejudice always does.

Scapegoating difference is tempting but dangerous. Blaming victims achieves only one thing, perpetuation of today into tomorrow. I don't know about you, but I want a different tomorrow. I want today to change tomorrow. I want to honour my difference and hold accountable those who torment. I want much. But then, tomorrow is big enough to hold both the smallest change and the grandest dream.

What a day I've had

Oh, what a day I've had.

It began with meeting Bill Lindsay for breakfast and then driving him up to the Columbus Center to give a day long talk. I was only able to be there in the morning because we were heading to see family in Ottawa in the afternoon. But in that half day of learning, my mind cracked open a bit and whole new thoughts tumbled in and out. I was able to re-articulate old ideas and re-conceptualize something I've never understood. It's way too much to write now when I'm way too tired. But, man, that's good training. I love being given ideas and the freedom to play with them a bit. It was awesome. Dr. Lindsay is a profoundly decent guy whose work is both compassionate and inspiring.

Oh, what a day I've had.

A couple of friends saved a seat for me at the conference and though we didn't get much time to see each other or talk together it was enough, for now. Belinda and Susan came in smiling and it just lifted my spirit to see them. We are friends that don't get to see each other enough. On top of getting to see them, Belinda brought pie. PIE ... sugar free pie ... PIE. How cool was that? I was so pleased to be able to sit with them and learn together and then later, on the phone, debrief from the day. It's was wonderful.

Oh, what a day I've had.

For three hours, the three just past, we've been visiting with Mike, Marissa, Ruby and Sadie. We've played, 'Chair of Death', we've had a pillow fight, we've done trampoline. Ruby is the easiest kid to make laugh and she laughs with complete abandon. It's amazing how exhausting and exhilarating that can be. Sadie is growing up quickly and is very much following in her sister's shoes. She makes shy at first (which I like, it's a safety thing) and then, deciding I'm OK she runs up and hugs me spontaneously.

Oh, what a day I've had.

The room is now quiet, Joe has just put a piece of pie in front of me

Time for Tiaras

We had just come home from visiting Tessa in the hospital when I read Shannon's blog about the last few days and weeks of her friend's life. Shannon's writing touched me because it explained so much of what we were feeling in our visits to the hospital. Tessa is slipping away into another land, another place, she struggles to find interest in the day to day events of our lives - which suddenly seem very busy and very confusing to her. She speaks wistfully of her old life, trying hard to remember it as real. She is now much closer to where she will be than she is to where she was.

On our way down to the hospital we were talking about what to pick up for her. For a while we brought food, sweet food with extravagant calories. Then, when food was no longer enticing, we started picking up iced coffee's and chocolate milk. She appreciated the gifts, but they are lined up, almost accusingly, on her bedside table. She's not a magazine reader and she's got more books than she knows what to do with on her electronic reader thingy.

I glanced into one of the stores on our way south. It's a store full of wonderful costume jewelry, a store that Tessa and we often stopped at to marvel at the brooches and tiaras. I can't get into the store, it's in a really old building, but they are shopkeepers who will bring anything I want out to the street for me to look at. And they do it with flair. Joe went in looking for something that would be bright and brash and bold. It was time, we decided, to stop trying to feed Tessa's body, it was time, instead to feed her soul.

Joe went in and found a bracelet, a clunky big bracelet, in the shape of a tiara. It had bright gems that easily caught the light, it was a bracelet that laughed. It was something that the Queen wouldn't wear but that Queens would. In a word. Perfect. We bought it, bundled it into the bag at the back of my wheelchair and headed south to the hospital.

Tessa was tired when we arrived, but we got in and Joe immediately started rummaging around in the back of my bag, I could see in her eyes that she was expecting something to drink, that she was preparing to look excited about it. I then asked her to close her eyes. She did. We took the bracelet and opened it up and put it around her wrist. She showed surprise as the cold metal touched her skin. Then she opened her eyes and they were filled with delight. 'Oh, I love it,' she said.

Tessa, we realized in our visit, is much closer to the shores of death, she is sailing away from us on a bed that looks, deceptively, stationary. During our short visit, she looked at the bracelet and laughed.

And we all knew that her laughter, now, could be heard on both sides of the great divide, I could not wish more for her than this, that when she comes to heaven's door, she enters laughing.

What Would Zangy Do?

Zangy Quiz:

Joe and I were on the way home from the hospital and decided to stop for lunch on the way. At Dundas Square there were all sorts of activities and we wandered in to see. In the end, we got separated. I couldn't see Joe anywhere, after a moments panic, I figured I'd just go over to the restaurant and see if he went there. The door is a tad narrow but I was making my way in just to see if he was at 'our' table. He wasn't. I was backing out when a woman came bustling over. She had been seated in the middle of the restaurant and noticed me entering.

When she got to where I was still backing up she asked if I needed help with the door. She was quick with a smile and very kind in her manner. I let her know that I was doing fine, that I'd lost my friend somewhere but that I really appreciated her offer of assistance. She smiled and nodded and went back into the restaurant. It struck me that she had managed to offer help in such a manner that seemed entirely natural. Like it was perfectly ordinary to get up and squeeze by other diners to help out a stranger. Not only that, she offered, listened, and responded. Cool. How nice is that?

When Joe arrived and we were waiting to place our order, I noticed the waiter bring her and her friend burgers and fries. Suddenly I got the idea to 'zang' them by getting the waiter, who was the same as ours, to let me pay their bill as a random act of thanks. I thought about it a second and then said to Joe, 'Do you think it would be weird to just buy their lunch and say 'thanks'.' He looked at me, thought for a second and said, 'Well, yeah.'

Suddenly I was in a dilemma. I did think it was weird but only weird because people don't often just simply do something spontaneously nice, especially if it costs a buck or two. The effect of giving Tangy Zangy to the guy at the grocery store reaped incredible results. He smiles at us now. It was powerfully reinforcing. But then, I'd asked Joe for advice, shouldn't I follow it? It annoys me when I get asked for advice and then have it entirely ignored. I was caught between wanting to do something nice for that woman and being nice and following Joe's advice.

So, I didn't.

Here's the Quiz:

In that circumstance, do you think it would have been kool or kooky to have bought their burgers. We had a similar meal, it would have been around 20 bucks (22US). I'd like your thoughts. To Zang or Not To Zang, that's the question.

I'm even going to offer a prize. To whomever offers the best rationale for their response, I'm going to send two packages of Tangy Zangy, one for you and one for you to pass along.

So answer away.

So far one vote for: Zang - Dave
One vote for Not Zang - Joe

I am vastly interested in your responses.

Tires

The first day back home after a lecture tour is always a difficult time. Transitioning from travel to home has never been easy for either of us. We feel out of place. We feel out of time. It's like we become unpracticed at regular every day living. We got up on Saturday morning both feeling odd in our home and without a real plan for the day. I decided, as Joe was going out the door to return the rental car, to go out with him. I'd meet him over at the Bay and then we'd see what happened next.

On my way to meet him my chair squeaked up the street. It's been doing that more and more and I've been thinking of getting someone in to service it. But the idea scares me. Whenever we take our car in for servicing, they want to fix the car by doing surgery on our bank account. The same will inevitably be true with my power chair. I glanced over and saw a reflection of my tires and noticed that they were getting quite low. It's something I'd been remarking on for weeks but have not had the gumption to do anything about. Well a day with no agenda is a perfect day to do things that never seem to get onto an agenda. I thought I'd suggest this to Joe.

When we met in the Bay and suggested that we put on the agenda things that just don't fit into our lives, he mentioned that he needed socks and couldn't get around to buying some. Well we were in the Bay, they have socks. We bought socks. Then we headed for Canadian Tire to see if they would put air in my tires. Whoever designed the chair did so such that the tire can only have air put in it by a mechanic. I have no idea why. When I need air I head up to Canadian Tire and ask one of the mechanics there if they'll do it for me. These guys aren't a talkative lot, but they always do it, they always refuse payment, they are always gruffly nice about it. Even so I don't like bothering them.

We got there and into the garage. I asked the closest mechanic to help with the tires. He nodded, mumbled something, then directed me into a bay where he could look at the tires and get the air hose. It's weird being in the chair when air is pumped in. I feel the lift, the power of the air. First one side. Then the other. I thanked the guy and we drove off.

All the way home I had to adjust to driving on tires that responded to the slightest touch. It was almost like magic, like maybe my tires hadn't been filled with air, but the spirit of generosity.

The Rapture

I'm going to say this all wrong but I'm going to say it anyway.

Here goes ...

Everywhere I've gone over the last couple of days people have been talking, lightheartedly, about 'the rapture that wasn't' ... the big 'uh oh'. Someone tried to talk me into a kind of sympathy for those who gave up their life savings, their life pursuits, in the false belief that the world was going to end. Part of me, of course, felt a kind of sadness and sympathy for their ultimate disappointment.

'But wait,' says the bigger part of my brain, 'they're disappointed that they weren't selected to fly to heaven and all the rest of us in the world aren't writhing in pain and torment.' They actually expected earthquakes and disasters to wreak havoc on humanity, well on the part of humanity that didn't have membership in their little club. I have trouble with that. I have trouble with that whole idea. I have trouble with 'them' against 'us and God'.

When the concept of 'the rapture' was first explained to me, I understood it instantly. The idea of 'the chosen' and 'the left behind' is a constant in human history and a constant in my life. Anyone who endured high school knew that there were those that were raptured into smugness and all the rest of us who were uninvited, unwanted and unacceptable. There has always been a standard that allowed some to be selected and others to be shunned. 'The rapture' always seemed to me, not so much as to be a sense of being transported by noble emotions as it was to be a kind of self exultation of those with privilege.

As a young gay man, living with the terror of discovery. I saw the self satisfaction of heterosexual couples, who paraded their relationships, drew hearts over their 'i's, and branded overpasses with initials and kisses, and felt their assumption of normalcy, their arrogance in staking out and claiming love as acts of violence and intolerance  Their rapturous proclamations of God's blessing and God's plan made their God a God of 'ynah, ynah, ynah' rather than a God of love. Oh, I know 'the rapture' exists, I know what it is to be left behind.

As a man with a disability who has had to fight off those who saw healing of body, not change of society, as God's will, I know what it's like to live a life considered 'unblessed'. I have turned down the 'laying on of hands' and the opportunity to confess the sin that crippled me - I have spurned offers of love that looked a lot more like hate. 'There but for the grace of God' is said in one breath, 'I'd rather be dead than in a wheelchair' is said in another. Um, yeah, thanks. Thanks for telling me that God graces you and damns me. Thanks for telling me that my life isn't worth living. Oh, I know 'the rapture' exists, I know what it is to be left behind.

So its hard for me to feel sorry for those who feel let down that they aren't having a milkshake in heaven while the rest of us are wallowing in sewage and waste here on earth. It's hard for me to crack open my heart, the one I'm told is sinful, the one I'm told is prideful, the one I'm told has crippled me - to feel anything much at all.

And yet, and YET, I believe. I believe in God who loves me. I believe in God who cares for us. I believe in He who walks beside me. I think I believe, because, when the dust settles, He and his ways, He and his love, He and the message of his life, were left behind too. I know this because I met Him, here, in the life I was given - and that, to me, is rapture.

A Prophet Amongst Us

I noticed his age before his disability. And his disability was immediately visible in the form of a white cane that he swept carefully in front of him. Even so, it was his age that drew attention. It was as if he'd achieved a Biblical kind of age. Like he'd have considered Noah a radical youth when he started to build the arc. He walked as if he didn't fully trust the cane. He swept with his left hand and walked with his right hand raised, as if about to give an oath. His feet shuffled the ground. He wore shoes that looked like they were kissing cousins to slippers.

It was a bright, bright, sunny day. The first we've had in forever. People were rushing about, mostly smiling, mostly chatting. Men bared bright white legs to the elements. Women wore blouses without sleeves and held sweaters draped over their arms. Everyone seemed to just want to be outside. Glances that had grown frosty over the winter began to thaw as neighbour nodded to neighbour. It was glorious. He was amongst them, walking carefully and slowly, sweep, sweep, sweeping his way towards his destination.

I saw him from far off, my wheelchair runs silent so I like to cut a wide swath away from those using canes. Give distance in safety. I don't like to startle the sighted, I equally don't want to frighten the blind. But I passed near enough to him to hear that he was quietly speaking as he took step after careful step. At first I was taken by surprise and glanced over to see that indeed he was talking, his lips moving almost imperceptibly.

'What a glorious day we have today.'

'What a glorious day we have today.'

'What a glorious day we have today.'

I'm sure few heard him. His voice was soft, well used. It was a voice that sounded like it had never been raised, never spoken with cruelty, a completely gentle voice. 'What a glorious day we have today.'

Reaching the door I wanted to enter, I pushed the button and waited for it to swing open. I turned and watched him walk away. Hand raised. Cane parting the sea of people in front of him. People talking on phones, people with buds in their ears unable to listen to his message for texting their own.

He seemed to be what he was.

A prophet.

Bringing the truth.

To people not hearing.

She 'Said' Goodbye

"Oh, she can't talk."

"Oh, she can't do anything."

"Oh, you should just skip her."

It was an abuse prevention class for people with disabilities. Two people attending had significant disabilities. Neither had speech as a way of communicating. One a fellow, was hugely determined to communicate and had an intense desire to be involved. Whenever asked to do a role play he got up, over slightly murmured protests from others who knew him in the room. Others with disabilities, had learned to expect little from him. Even so, he headed to the front looking determined to succeed. As he came up I did the work of adapting the role play such that typical speech wasn't necessary - giving room within the room for alternate communication. His success, every time, strengthened his self esteem and the applause for him seemed to make him taller. The last time he got up, it was to the encouragement of his peers not the muttered disbelief that met his first efforts.

They say that the days of miracles are long past.

The woman who sat beside him, also was a person who didn't communicate in traditional ways. She, though, seemed to have travelled in, sinking into the safety of self rather than risking reaching out to a world that had no time to understand. A linguistic minority of one set adrift in the world of words. My goal is for full participation, my goal is that everyone give it a try. No one is ever forced to participate, which would be weird in a class about saying no, but everyone is encouraged. When I asked her to come forward the room exploded with words. 'she can't!' 'she doesn't' 'she isn't' 'she won't' ... these words, which came from others with disabilities, others who had had these words applied to themselves, others who should know that 'people can', 'people do' and 'people will' ... if just given the opportunity.

One of the assistants in the room to help me came to her and offered her assistance to get up and come to the front. I saw her move, indicating that she wanted to try, then I saw the words of disbelief and low expectations strike her back into her chair. I grabbed hold of my wheels and rolled over to her. I parked right beside her and caught her eye, I told her that she could do the role play right there, right from her seat. All she had to do was indicate 'No' in however she chose when someone came too close to her. Her eye caught mine. She looked deep into me, trying to determine if my purpose was to shame her, to set her up, or to actually encourage her. She'd been tricked before, this one. She'd trusted before, this one. She knew the world, this one. But, she gave me the gift of trust.

The role play started. Joe walked slowly towards her, she watched him approach, as he came closer and closer her right arm went up, her hand swung out, she clearly and purposely indicated 'STOP'. It was a movement with such clarity of purpose that everyone in the room knew what she meant. There was a gasp, from all those who knew her, applause rained around her. She caught my eye again, and smiled.

They say that the days of miracles are long past.

Years ago I was told, by someone mentoring me, 'The most important thing to understand is what their limitations are.' And it's taken me a long time to accept that. I agree, wholeheartedly, now with that statement. Because, for the most part their limitations are our low expectations. I get that there is disability. I get that disability means something. But it doesn't mean what many think it means. It never means that learning is impossible. It never means that participation is a futile pursuit. It never means that time given is time wasted.

I saw her get up and leave the room, she turned and smiled at me. They said she couldn't talk. Maybe that's true, but in that moment, I thought she was the most eloquent person, I'd ever met.

The Elephant in the Room Has Four Feet

I arrived in my hotel room and wasn't surprised to see a big green bag, left as a gift by the conference organizers. Every time I come to work here, they buy a gift and there's usually a bag or a box waiting in the room. They know me well and usually fill it with all sorts of teas and treats. It took a second to get things organized in the room. Both Joe and I like leaving the gift until everything is settled and we aren't rushed in enjoying the sheer pleasure of discovering what little treasure we were to find.

We looked in and found two boxes, each containing 'bed risers' or 'elephant feet'. The note with them said that these were to make our travel on the road more comfortable. They must have really listened about us being in rooms with low beds  or me being unable to use the chairs in a room because they are too low for me. When on the road, I'm in my wheelchair all the hours that I'm not in bed or in car. I get wheelchair weary. I love my chair, but occasionally a sofa would be nice.

So we've set about putting the elephant feet under the chair in the room.

Bliss.

In a hotel, sitting up, getting up and down without help. Independently sitting. Sitting without fear of rising. Relaxing in a chair with a pillow.

I think that this might be my very first, ever, gift that took my needs as a disabled person into consideration. It means that my disability is not something that can be 'gifted' in the same way my being a reader can be gifted, my being a tea drinker can be gifted. It's now just another thing about me that makes shopping for me easy. You know that you are fully out of the closet and fully identified as a disabled person if you can open a gift and scream, 'Oh My God, Elephant Feet, just want I wanted. And, ultimately, that's very, very, cool.

Yes, oh, yes, got elephant feet.

And I'm thrilled on so many different levels.

Pills

I saw a tee shirt that, I think, was supposed to be funny. It said: "I used to care but now there's a pill for that."

I didn't laugh. I don't think it's funny. I think it's kind of true. I feel that we're losing the social contract we have with society and with each other. That unspoken agreement that we are all human, we are all in this life together, and that we all need to watch out for each other.

The other day I spoke with a woman who, due to a serious injury, had to use a wheelchair for a couple of months. She said that what shocked her was both the annoyance that people had as she struggled to get around and the sense of purposeful invisibility that people had to her needs. Doors not held, space not made, time not given ... all of these things combined to give her a sense of desperate hopelessness. She said that she hadn't noticed the lack of compassion in our society until she was of a need of it. Her fear is no longer of using a wheelchair, she conquered that skill and got handy at getting around, her fear is of the social status and the demeaning manners that she will face should she ever come to rely on a wheelchair.

I did not find that I could comfort her with anything more than stories of the every day incidents of kindness I experience. A long time wheelchair user once told me that having a disability gave him an evolutionary social advantage: it was an arsehole detector. Kind, genuine people were easy to spot and stood in stark contrast to those who were not. In a way, I think that's true. Just today, while travelling and stopping to get lunch, a woman very kindly offered to help when I nearly dropped something.  Later that same day a dad with his son helped me out spontaneously. Three people in one day helped in a way that didn't diminish. How cool is that, knowing that they are there? Of course, I met way more, way way more than 3 people - but I choose not to focus on the rest.

As disturbing as it may seem to realize that there is 'a pill for caring', it is equally disturbing that someone would choose to advertise that fact. The desire to anesthetize oneself from compassion of course is a desire to be rid of social responsibility for another. Particularly other others. Those whose numbers aren't listed on your cell phone, those who aren't in your email address book, those who don't 'like' you on Facebook. Those other others, who make up the stuff of society, who have expectations of mannerly interactions and friendly commerce are so demanding.

Maybe someone should, and I think this is a terrific idea,  invent a pill for indifference.

Dreams, Realities and Subway Rides

I was holding on tight as the subway rocketed under the city. I've fully conquered my fears about driving on and off the subway cars and this is a fairly usual way for me to travel on cold and rainy days. We were heading down to visit Tessa in the hospital and were both thankful that we had an accessible subway stop only blocks from our apartment. As I looked around I saw a number of other people with disabilities in the car with me. I was in the only power chair, but there were walkers and canes everywhere.

My first experience using the subway with a wheelchair was when the wheelchair wasn't mine. We'd just moved to the city, ahem, decades ago. I was working with high school students with physical disabilities. One of the students really, really wanted to see what riding the subway was like. I arranged for Joe and I to carry her down the stairs, in her chair, and then upon arrival at where we were going, carry her back up. I was a big, strapping, strong guy back in those days and it was easy to conceptualize and almost as easy to actually do. It doesn't always work out that way.

We had a bit of a tussle with buying her a token, but once past the attitudinal barrier, there were all the physical barriers. But we did what we set out to do.  It was a radical idea at the time and it was radically fun to actually do. We all felt roguish. People gaped at the sight of her sitting there in the car with us chatting as if she'd been on the subway a thousand times.

And now, here I am, on the subway, in a wheelchair. And it is just as natural as she once pretended it to be. No one took much notice, no one much cared. It wasn't a big deal.

Oddly, that's the big deal.

People with disabilities just being part of the community.

People with disabilities just getting about their day.

That's what it's all been about.

When we've so far to go with accessibility we can forget how far we've come. For the cost of a token I got to be 'usual'. I loved the plain ordinariness of this exceptional experience. I loved being able to go visit a friend in a hospital on a spontaneous whim rather than have to plan way ahead and arrange transportation.

We carried that young woman down to the subway car not knowing that she was trailblazing. That her desire to be able to have what others took for granted would one day transform attitudes and remove barriers. Her dream became my reality.

I think that's the basis of all human progress.

5 Things You Need To Know ...

Five Things No One Tells you about Using a Power Wheelchair

1) Wheelchairs can lose weight.

Oh, it's true. My wheelchair has lost at least two inches around it's middle and three around it's base. I've not put it on a diet or anything - electricity light, nor have I actually measured the dimensions. But I know its true. You see when I first got the wheelchair there were all sorts of places it didn't fit. It wouldn't fit through the doors at the south end of the Eaton's Center, they were just a wee bit to narrow. But we were caught in a rainstorm the other day and decided to try again. Suddenly, it fit right through. With room to spare! Who knew!? In my first week in the chair, I'd attempted the same thing and simply couldn't make it. Now, without a problem, it fits through.

2) People will be astonished and lavish praise on you for your skill at getting around.

When I back into an elevator, those that aren't annoyed at waiting while I do so, are almost uniformly impressed. Really, really, impressed, if I played a fanfare while backing in I do believe they'd applaud. Some have that look on their faces that I've seen others get in watching a dog perform a trick or a pony jump through a burning ring. Amazement. I get complimented all the time for simply turning a corner or for negotiating along a sidewalk. I always smile demurely, a trick that's handy to have if you've a disability, rather than congratulate them for their ability to balance on those two tiny feet.

3) You will become a curb cut expert.

All curb cuts are not created equal. I know curb cuts here in my neighbourhood. I can tell you which side of Yonge Street is easiest to travel right the way from Bloor down to Queen. I come to think of curb cuts as having a personality of sorts. There are the welcoming curb cuts, rare enough to be celebrated; there are the decent ones, the majority fit in here; then there are the vicious ones, steep drops and unlevel connections. There's one I absolutely hate, I only go over it if absolutely necessary. Most often I will cross over at the set of lights south of it and then cross back over at the set of lights north of it. I hate it. I want it to know that.

4) A power chair (or scooter) isn't a Volkswagen.

When we first got our VW bug, we noticed that others who had them would wave to us when we drove past them. Odd. A club. Membership. I thought maybe the same thing would happen using a power chair. I would notice others using electric mobility devises and smile at them. Most looked at me annoyed. Some, a few, smiled back. It seems that we definitely don't have a club. Way too bad. I figure we all face the same things so we should be able to pull up to someone and say, 'any hints about getting round Metro here?' But, alas, no. There are a few though, who declare membership. Yesterday, just leaving a grocery store, a fellow, big white beard, wee small chair, rolled over and asked me about my chair. 'You've got the biggest wheels I've ever seen,' he said. I was, oddly, inordinately proud at that moment. Seems he's getting a new chair and wants big wheels, 'better traction in the winter'. So I told him the make of my chair and we parted company. Nice. Membership. It's an idea.

5) Men's asses will kill ya if you aren't careful.

I try to be careful of gender based statements, but my experience is that women are much more aware of body space than are men. I've never had a woman nearly drive me out into traffic or smash me into a wall. Men, and their attached buttocks, however, have done so often. I'll be sitting looking at something and some guy will turn around and their butt will connect with my joystick (oh shut up) and send me careening off somewhere I don't want to go. In the subway I'm terrified. I try to hide in a group of women, using their boundaries as a shield for my personal safety. I think scooters and wheelchairs should come with a warning: use caution when operating anywhere near men's bums.

There.

Don't you feel edified?

Don't you feel informed?

Me, I live to serve.

The Woman Who Made Me Cry

As she rose from her seat and advanced to the podium to give a lunchtime speech, I remembered him, I remembered tears, both his and mine.

As a result of the new legislation requiring that all people with disabilities in Ontario be trained in abuse prevention skills, I've been travelling the province's length and breadth. In doing some statistics for work, I discovered that in the last few months alone I'd trained 410 people with disabilities and 336 staff in the art of abuse prevention. It's been a somewhat overwhelming experience. At times I find myself weary of the 'all abuse, all the time' existence. Even though it's about 'prevention' it's also about 'abuse' ... but I refuse to whine, this is what I've always wanted, the mandatory training of people with disabilities in safety skills. I'm thrilled to be a small part of the process. I was thankful that, years ago, I had been asked to create an abuse prevention class for people with disabilities; that I had taught abuse prevention for over 20 years; that I had experienced training trainers at Vita; that I had the great luck of being in the right place at the right time.

I watched her place her notes carefully on the podium and ready herself to begin. I wondered if she felt my gaze on her and if she noticed the wetness around my eyes. Now, the memory of him had me fully in its grip.

He had come in with about 40 others, for an abuse prevention class. He was maybe a year or two older than I was; he looked around the classroom warily. I knew that he was experiencing the momentary panic of a man whose experience with learning wasn't good, whose expectations of himself were low. He sat down and wiped sweat from his brow. It's because I know his history with education to be a painful one that I designed the class to burst into high energy with yelling; with loud raucous laughter. I wanted a beginning that said 'this isn't your typical class, this isn't desks in straight rows, this isn't learn through listening, this is something different.' His expression of relaxed laughter moments after the class began was reward enough for me.

But it was nowhere near the end of the story.

Much later in the class, it was time to teach about body parts. This is strategically placed well into the curriculum so that those attending will have learned something about being in the class - they are safe here. Many attending will have been victimized; many will have experienced punishment regarding sexuality. In order to learn, they needed first to experience a sense that they would be respectfully cared for here in this place, here with this teacher. I always tense up when we get to 'body parts' as many of those attending, those in their fifties and sixties, will have never learned the words, and if they have, never been allowed to speak them. These words, misunderstood as 'the language of sexuality', are more correctly considered, 'the language of power'. I know that, and soon those attending would too.

We begin with a coin toss to see if we will do the male body or female body first. This time it was men first. Joe stands beside the flip chart with an outline of the body and the class has to fill in the parts that are missing. We always start with the face; get people comfortable with the process. Joe draws on the parts and I make fun of his drawing. The laughter breaks the tension and takes the focus off the body and on to something safe - Joe isn't very good at drawing.

The male body was nearly done and, predictably, the genitals are the last needing to be identified. Someone called out, 'He needs a vagina!' There was quiet as they all waited. This mistake isn't because the person who spoke had a disability and is incompetent, which is what a police officer might think, it's because the person who spoke had a disability and thereby had been purposely denied education. 'That's right, vagina is a word for a private part of a woman's body, does anyone know the name for the male part.' This is a class about being 'right' not being 'wrong'. The identification of the male 'part' as a 'vagina' was more right than wrong, of course, and that needs to be respected.

Finally, someone said, 'I think the word is 'dick''. Everyone howled with laughter, and so did I, because, simply, it was funny. 'That's right too, that's a slang word, does anyone know what a doctor would call that part?' Another voice, very quiet, said, 'penis'. Joe then drew the penis on the body. I made a joke, Everyone laughed until they were exhausted from it. I saw the man who had looked anxious at entering staring at the drawing. I had Joe review all the parts he had drawn onto the body. I saw the man lean forward, listening hard. When Joe said 'penis' while pointing to what he had drawn, the man said the word silently along with him. Then he sat back and started to cry.

We moved on through the class and the fellow collected himself and participated as we did the female body. The group learned, the group grew as people. It is such an honour to do this work. We finished with the 'pledge of personal power' and it was over. They were milling about, chatting to each other as they readied to go. He, the man who had come through the door with hesitation, hesitated again. He came back to me, sitting in my wheelchair and said quietly, 'I have waited all my life to learn about my body. Thank you.' Then he turned and left. I kept it together only until I got in the car.

I cried myself out. Joe kept wiping his face but Joe never admits to crying. I kept feeling this sense of wonder, underpinned by a sense of outrage. Wonder at the fact that I get to do this work. Outrage that it has to be done. Can you imagine having others deny you even the basic language for your body? Can you imagine being only at the receiving end of decision making? Can you imagine having your competence diminished, not by disability, but by the power of others?

But it's different now.

And it's different, ultimately, because of the courage of just one woman.

The woman speaking.

True, many have worked on what became a reality: legislation that would change the world for people with disabilities. Legislation that would give people with disabilities the dignity of knowing about both bodies and boundaries. Legislation that would decrease the power gap between those who give and those who get care.

Legislation that would give all abusers pause.

Legislation brought into being by Minister Madeleine Meilleur.

She was the woman at the podium.

I never, ever, dreamed that I would desperately want to speak to the Minister, but I did that day. When she was done and lunch was over, I spoke with a fellow sitting at her table. I asked if he would introduce me to her. He readily agreed. As she came towards me my heart was in my chest, it was wrongly placed, I wanted it to be in my words. I did to her what others do to me when I speak. I began without context. I started to tell her that I wanted to thank her for what she had done, for the courage that she had had, for the legislation that had passed into law. She quickly asked a question to clarify what I was speaking about, this was a bright woman with an incisive mind, and clarification done, I continued.

This legislation, I believe, is groundbreaking and I wanted her to know that I appreciated what it did and what it would continue to do. I wanted to tell her of the man who has waited all these years to learn about his body, to have the dignity of language, to have his adulthood respected. I wanted her to know that her work would fundamentally alter the experience of thousands upon thousands of people with disabilities. I wanted her to know of this man. But there wasn't time. There was only time to say 'Thank you' and to express, quickly, that her work was appreciated. I could tell by her eyes that it mattered to her to hear what I had to say.

I left the luncheon and drove my wheelchair into an Ontario that I am so incredibly proud to live in.

The Bed Next Door

Shocked.

Shocking.

Such an innocent picture, a bed neatly made.

Such a dark meaning.

We entered the palliative care unit for a visit with our friend Tessa. She is in a small private room that is fronted by a tiny waiting area off which there are only two rooms, hers and anothers. Every time we've visited we've been part of a small group that was divided by 'she who is in the left room' and 'she who is in the right room'. This time however, the left room was left empty.

The bed was made.

The bed was waiting.

For the next. Not the last.

Tessa was not having a great day. Breath is becoming more difficult. Fear becoming more of a constant companion rather than and pop in visitor. She was sitting up on the side of the bed. I remembered, suddenly, the rush of euphoria I had had when I left, for the first time, the Intensive Care bed that I had laid in for days. Was that years ago now? Wow. I realized, as only one who is in a wheelchair can realize. If you can sit - you can move.

I suggested to Tessa that we get a wheelchair and head downstairs for tea. She simply nodded. She wanted away from the oppressive realization of the empty bed next door. She rolled into the coffee area, surrounded by the loudness of life, the quick moves of the healthy. She sipped tea and listened to us talk. She spoke of her fears, briefly, and then realized that she had thought she was never going to leave the room she was in. Yet here she was, surrounded by wailing babies, having her voice drowned out by people shouting orders to the clerk working the counter, have the sense of being normal in abnormal circumstances. She brightened. Absolutely brightened. She relaxed back into the comfort of the wheelchair and simply enjoyed her tea.

It was only a moment.

A simple moment.

But it mattered.

And it was made available by a chair on wheels. A chair that can take someone from one place to another, from home to work, from theatre to restaurant, even, from deaths door to coffee shop table.

I don't know who first put wheels on a chair but when the roll is called up yonder, paradoxically, I'll stand them a drink.

Because, for just a few minutes, we were able to take our friend a little bit away, from the bed next door.

Quote Able

"Science without religion is lame, religion without science is blind." Albert Einstein

A lot of people put quotes at the bottom of their emails, kind of a personal signature. I am a lover of quotes, in fact my new book, which I hope will be out sometime later this year, is a collection of quotes about disability by those who have disabilities. Our bathroom always has a quote book sitting beside the toilet and Joe and I are always hollering quotes out to each other when we find one that strikes us funny. So, I get it.

However, when I received an email from a friend of mine, a highly respected professional in the disability field, I noticed the quote which she used as a tag line. I'd seen the quote before but never really took in how it said what it said. Suddenly, with only a moments reflection the quote seemed to be full of ableist and disphobic attitudes. Now I don't think Albert Einstein was purposely setting out to denigrate the disability experience but in using disability as a diminishing adjective - it equates disability with something really negative.

I promised myself that I wasn't going to become like the 'language police' who jump on every possible violation of some very subjective code of linguistic ethics. I figure that we get rid of the 'r' word, I'm good. However, the woman sending the email was someone I knew to have a really high set of personal standards and a really deep awareness of issues around disability.

What to do?

What to do?

What to do?

Before I could think myself into doing nothing, I thought I'd simply trust my understanding of her nature and write her a brief note. Now, I've written corporations, I've written newspapers, I've written politician, I've written Madonna ... and all those letters were easy to do. Those letters were long where this email was short. And yet I don't think I've written a tougher email.

I didn't want to hurt my friend. I didn't want to insult her. I didn't want her to think that I was a nit picky nincompoop. (As an aside I initially wrote 'a nit picky nutcase' and then thought -whoa, whoa, careful about expressing myself at the cost of someone else's self esteem! It's so culturally acceptable to use disability or mental illness in this way. Yikes.) I wrote the email anyways, even with growing apprehension. I paused over the send button, then, hit it.

It didn't take more than a few minutes to get a return email. I was so relieved that my intent was taken at face value and she said that she'd remove it from the bottom of her email. She even kindly quoted from an earlier blog where I'd written that having a disability often meant 'pointing out the obvious to the oblivious' and said that she would take it off the bottom of her email.

Then, as I was reading that email another came in saying that she was going to wait until she found another quote, but couldn't and simply removed it.

I wrote her back saying that she was 'as cool as I thought she was' and expressed my relief that she had responded positively to my suggestion that she take another look at how ol' Albert expressed his opinion. Then I asked her something more, as I can be demanding, I wondered if she would mind if I wrote about our brief interchange, I wondered how many blog readers were finding themselves in my position of wanting to address something with a family member or a friend but was afraid to do so. I think, and I may be wrong, that the experience of finding it easy to take on a corporation but difficult to take on a friend to be a common one. A story of a relationship, not ruined but probably made stronger, might help.

This story only happened because I trusted the heart and the intentions of the woman I wrote to, it only happened because she was open to feedback. I imagine it won't always work this way. But what is friendship if it can't bear the weight of discussion and even disagreement? We all know the answer to that question.