Our Own Personal Eve

For many years Joe and I would fly off somewhere to celebrate New Year's Eve and to suffer New Year's Day. Our prime two choices were New York City and San Francisco. Well, actually we went to New York only once, got caught in the crushing crowd in Times Square and decided to spend the holiday on the west coast thereafter.

We stayed at a run down hotel, that we really liked because it had real character, which was directly across from Frenchies Adult Boutique - which often decorated their store with a Santa in a sleigh being pulled by seven blow up sheep. We were within walking distance from Reflections, a bar, no longer there, where we liked to drink, conveniently located next to the Wing Lum restaurant. We'd eat, we'd drink, we'd 'party hard.' It was lots of fun.

Neither Joe or I can remember how it is that we decided, or even if we actively decided, to no longer travel to the States at the end of the year. All we know is that our tradition changed. We ended up coming to Toronto, we lived in Quebec at the time, for the holiday. We had a favourite bar and a favourite Chinese restaurant - both gone now. We'd eat, we'd party - and we'd welcome the New Year.

We can't remember how it came to be that, over time, we stopped going out for New Year's celebrations. Nor can we remember how it ended up that we look forward to, staying at home, Joe with his beer me with my tea and being in bed by 8:00pm and snoring at 8:01. But that's what happened.

Funny thing is, with these changes, we don't feel like anything much has been lost. We enjoyed those times for what they were and for who we were at the time. We equally enjoy our times now. There are no regrets, there are no longing desires for 'the good old drunk days' of our youth. We, long ago, decided that we wouldn't be held captive by traditions that no longer served their purpose, that we were free to be able to make our life the way we wanted it to be.

We have no idea what our tradition will be in 5 years, but for now, it's tea, beer and bed.

Oddly, when I mention our New Year's plans, I get kind of sorrowful looks. People often love to look at another's life from the perspective of their own. What might seem sad for them, is wonderful for us. What might seem fun to them sound horribly dull for us. That's to be expected.

But it's the question, "So you don't go away for New Year's because you're disabled now?" Why would every change in our lifestyle have to be laid at the feet of disability? Why can't we just be changing as people? This year I've travelled to San Francisco, to Edmonton, to Boston, to Halifax, to Fredrickton, to Kingston, to Ukiah, to Eureka, to New York, to Harrisburg, I'll stop there ... and yet somehow I can't get on a plane to fly to San Francisco because of my disability. How odd.

Things change.

Times change.

People change.

So we'll celebrate British New Year's at 7:00pm and then, chat over a couple of drinks and then head off to bed.

Happy.

Which is how you are supposed to enter the New Year.

The Alarm Clock

Every day for the last several days I easily got up, around 4 and began my day. No alarm clock woke me, no bus awaited me, no demands were placed on me, but I got up and enjoyed the quiet of the morning at home. This morning, the morning I was to be back in the office, the alarm woke me up at a little after 5. I struggled to wake, struggled to get showered and shaved and dressed and ready for the bus. The one morning I could have slept in, I couldn't.

I was surprised to get on the bus and find someone else already there. At the time I get on, I'm usually the first pick up. I said good morning to him and he nodded in reply. I could see he was tired and was content to simply share the bus and share the quiet with him.

One of the things I like about taking the bus to work is that I go a different route pretty much every time there are other passengers to be picked up or dropped off. I didn't recognize the part of the city we were in but I knew we must be close to his destination because the bus was making a series of tight turns in a very residential area. I turned to him, "Is this you then?"

"Yes," he said, "I'm near home now."

"You had an early start this morning," I said.

"Yes, I was at the hospital for dialysis overnight," he said, "seven hours."

"Wow."

"You going to work?" he asked, knowing the answer because the driver had already asked me if I was working tomorrow, New Year's Eve day.

"Yes," I said, "I'm always the first one in."

"You are a lucky, lucky man," he said, "A lucky man."

"I suppose I am," I said.

Then the bus pulled up to his home and he got up and as he was leaving he said, "Have a happy New Year, appreciate everything you have and don't be bitter about what you don't. My dad always said that to me on New Year's, I figure it's pretty good advice."

Yes, I suppose I am lucky.

And I should be feeling grateful.

Even when the sound of an alarm makes me feel otherwise.

Kindness: The Long Reach

Not a popular kid at school for a couple of reasons. One, I was fat. Two, I was the kind of boy who covered his face with his baseball glove and ran when the ball made it to his corner of the field - I had no desire to catch it, I simply wanted to escape injury. I guess that there was a third reason too. I knew of my difference early, I knew I like boys. I knew no one could know. Containing a secret that big makes everything awkward. I was awkward.

I don't think of those times often. Although as I get older, as they get further away, it seems as if I'm remembering things more often rather than less often. The memories are changing though. I used to remember the hell of it. The time a couple of the boys, in gym class, made me stand on a bench so they could get 'a good look at my tits' (verbatim from a memory that's never dimmed) and then having them grab, one each, and squeeze so hard that their hand prints reminded me every day for over a week what a freak I was. I used to remember those things. I can still, obviously, conjure those memories at will.

But, I have to conjure them.

What I remember now, what comes to me freely, when I'm not even thinking about the past, are the moments of deep human kindness that I experienced. Those moments, more than a few, less than many, probably saved my life. Although that's a dark corner where I choose not to go. But, when those memories come, they aren't thought of moments of light in darkness. They come flooded by light. They come carrying the power of miracle. They come as a means to remind me that kindness has the unique power to have one meaning in the past, quite another in the future.

I had one of those powerful memories, of a moment of sheer kindness, yesterday. It came, as they do, unbidden. It came, almost as a gift, and that's how I accepted it. I sat, quietly and remembered. Others had been cruel, one had not. One reached out to ensure that I wasn't left out. This is a moment from my past that influences me as a person, and as a professional, even now.

Then, when I was looking up something on the Internet, I swear without typing a name into the browser, I saw a picture, taken recently of the one who did this kind thing. Surrounded by family, wearing a face I would no longer recognize - like mine - old. But I saw in the smile and in the eyes, the same capacity for kindness that I had received.

I was glad that it was a happy picture.

Kindness, I realize, is how we can all reach into the future.

Several months ago a young woman thanked me for an act of kindness that I had done a couple years before. I did not remember doing what she said I did, but I did not doubt her. I let her tell me what that kindness had come to mean. How it had come to matter. Something I did in the past, touched her future.

Kindness is how we can all reach into the future.

And make change.

I Need a Wee Rant

I'm afraid that I have to let loose with a bit of a rant today. I know what I'm going to describe is going to sound petty and like I have a really thin skin, a really low bar for annoyance. But it isn't the magnitude of the irritant, it's the frequency.

We were entering a building through a door that I'd never used before. They have a auto door complete with a well placed and well marked, disability symboled, push pad. But as we approached we saw that the door had yellow tape wound through the handles and a sign saying "please use other door." So, we did.

The entrance we typically go through, when activated, makes things easy by having both of the double doors open. There are a few of these in our neighbourhood and I love them. I can get through one door, but that involves driving and paying attention, when both open, I sail through.

So when we got to the other entrance we see that it to has two (2) doors. One swings open to the east, the other swings open to the west. Joe holds the door open, and I start through. Predictably someone comes to those doors and stands, beside the other door which works just fine and waits for me to get through. He's choosing to be inconvenienced. There's another door. Right there. Beside me. A fully functioning door. He doesn't need to wait. He doesn't need to look impatient. He doesn't need to glance at his watch to let me know he's in a hurry because, and let me be frank, there's another fucking door.

A line up in forming.

I stop, half way through, my heart racing. I put my hand on the door  beside me, the one we aren't using and I say, "There's another door." He just looks at me like I'd spoken 'crippleish,' a language he just can't comprehend. I glance to the others waiting. 'There's another door.' They all choose to wait. Wait and watch. Wait and be impatient. Wait for the door I'm using. I don't move for a second. I think they don't understand me. I push at the door, hard, and it swings open. 'THERE'S ANOTHER DOOR.'

No one moves to go through it. I start up the chair again and get through the door, those waiting then rush the door and hurry out to their important appointments and their important lives finally free of my use of 'their door.' And I mean that, it was made clear to me that this was 'their' door and I was taking too much time with their fucking door.

We got to the elevator and I said to Joe, "Sometimes the hardest thing about being disabled is holding yourself back at just screaming at people."

Joe thought for a moment and said, "Well, maybe you should some times."

Choosing to be inconvenienced is just a socially subtle way of saying 'You take too much time, too much space, you shouldn't be here.'

Well, let me tell you, I am here and, remember, IT'S MY FUCKING DOOR TOO.

Sometimes Community Happens

I was waiting for the light to change in order to go south. They were coming towards me from the east. One was in a four wheel scooter, the other in a power wheelchair. Being still full of holiday spirit I took the chance and waved at them. They both waved back. Lots of people who use mobility devises do everything they can to avoid even eye contact with others who also motor rather than walk. But not these two, they pulled up beside us and began chatting.

As it turned out we were going to the same destination. All of us on an early morning shopping expedition. They, like we, have discovered that the earlier you go, the easier it is to get around the store. Just as we entered the building we came to a stop to chat a little bit more. I mentioned to them that my chair had been unpredictable lately, the ramifications of which they understood instantly. Now we are more than strangers. We have entered into that realm where there is instant intimacy.

We talked chairs. We talked adaptions. We talked funding sources. They had great advice of where I should go for help, what kind of chairs they have and which were good and which were not. They both had stories to tell. As, and you will not be surprised, did I.

We came away with phone numbers of those they though could be helpful to us.

Over the next half hour we kept running into each other in the grocery store, and though we were now just shoppers, there was that conspiratorial smile that comes from knowing, just knowing, that you are understood.

Adjectiveliess You

I think the most magical moments in life, for me, are those when the adjectives disappear and all that's left is 'being'. Let me explain what I mean by telling you how that happened this Christmas.

It was Christmas eve and Mike and Marissa and Ruby and Sadie were all over at our place. We had prepared our traditional feast so, after one or two presents were opened, we noshed and talked. It all ended when the kids decided, enough with food, enough with talk, it's time to open presents.

The girls, this year, have made a huge transition. They were equally excited to give as to receive. They were excited about the mound of gifts they had to open but that could wait. They eagerly gave gifts to Mom and Dad and to Joe and me. We opened them and marvelled, without pretence, at the thoughtfulness behind the gifts.

Then they opened theirs. Paper was flying and they were like paper tearing machines who set about the business of getting the gifts free of their wrapping. What took hours to wrap took seconds to be torn asunder. It was fun watching the whole process.

I watched all this from my chair. I have a big chair, no surprise there, that's set up on huge cement blocks to give it height. This makes getting in and out of the chair easy for me and it was our cheap adaption for what would have been an expensive purchase. It's height gave me the perfect view of all the happenings. Watching happy kids be especially happy is delightful.

When it was all done, the kids reached into their stockings, which had been set aside for the event. And they each pulled out a story. I had written a 5 page story about Ruby and Sadie. It was about a wonderful moment in time. It was something I wanted them to remember so I thought turning it into a written story would do the trick.

To my surprise, Ruby climbed up on my chair and sat beside me on the arm of the chair. She had decided she wanted to read the story aloud to the group. I remembered, instantly, a couple years earlier Ruby saying, with such sadness in her voice, that she couldn't read. Now here she was with a 5 page story in her hand, about to read it aloud.

She began. I listened as she read the words, captured by her excitement about the story and watching as the memory of the event came alive in her voice. Sadie watched Ruby read and you could almost see her memory brought to life in her eyes. For a few seconds, magical seconds, I ceased to be a man with adjectives. Fat. Gay. Tall. Disabled. Man. Cook. Writer. Consultant. Supervisor. Partner.

Surrounded by the warmth of the gathering, listening to the voice of a child reading a story, I was able to just simply be.

Be.

Without adjectives.

I am very happy to be me. I am very happy that I come with adjectives. But. It's nice when, for a few seconds, all that exists is the essence of who I am. Oh, I know my being is affected by every single thing that I am, but what I am, isn't all that I am. My Daveness is separate, in an odd way, from Dave.

I'm imagining now, after re-reading what I've written, that this will make no sense to anyone. That I've not done well in describing what happened in that moment. But I'm going to post it anyways. Because this is a story I want to read again. I want to be reminded that I need, now and then to seek times when my focus leaves the list (Fat. Gay. Tall. Disabled. Man. Cook. Writer. Consultant. Supervisor. Partner.) and moves to that part of me that's only me gets a chance to assert itself in my mind and my heart.

I hope, really hope, that each of you has moments like that. Moments when you remember that how you are described isn't the whole of who you are. Moments when you remember that being you is an indescribable experience, that there are no adjectives big enough or complex enough or inclusive enough to capture what you are when you aren't anything but you.

She Said Yes

The news saddens me.

It seems every day, every where, women are suffering sexual abuse and victimization at the hands of men. I was having a discussion about this the other day and was surprised to be told, when I said that I simply couldn't understand the 'why' behind the problem, that as a gay man I didn't 'get' the sexual politics between men and women. That shut me up and effectively sidelined me from the conversation until I realized something simple.

There is no sexual politic.

Yes is yes.

No is no.

Without a yes, it's no.

Isn't that simple?

I am aware that as I write what I'm going to write that I am not a theologian. I only once went to a Bible class but left when they got to the part about gay people being terrible sinners with unredeemable hearts. So, I write what I write naively from my own meagre understanding of the scripture.

At Christmas, as the story of the birth of Christ is read in churches all over the world, will people notice that it all begins with a woman's consent.

Mary said 'Yes.'

Nothing happened until Mary said 'Yes.'

Mary asked questions.

And nothing happened until Mary said 'Yes.'

Perhaps, to me, the most significant moment in the Christian story begins with a poor woman, with little power - still having the power to choose. Christianity, then, is built on consent and a woman's inherent right to say 'no' - even to God - when the issue was about her body. Her body. Her choice. I've never heard this preached on. But as someone who works with offenders, it speaks loudly to me.

Christianity has a checkered history when it comes to respecting women.

But God doesn't.

Because Mary said, 'Yes' and the story begins.

 I am a gay man. True. But the idea that consent is something that is only understood in the context of male/female politics is absurd. Consent matters in the context of any human relationship. Consent matters when it comes to sex, but it matters when it comes to almost everything.

Consent matters.

I believe this.

My faith is built upon a woman's 'Yes.'

Christmas begins with a quiet and thoughtful 'Yes.'

Christmas begins with consent.

May you all live in the world where your consent and the consent of those around you is sought and respected and, ultimately, heard.

Merry Christmas.

Hope and Hopefulness: the light is on!

 

We are on the eve of something amazing.

I never thought that being on Facebook would lead me to kind of a spiritual hopefulness and a belief in the power of thousands of 'one's' to make change. But, indeed that has happened and it's happened big time.

It started about a week ago when I noticed that a friend of mine had, I thought, created an overview of their year and, again I thought, they posed it on Facebook. I turns out that this is a seasonal Facebook feature. You click one button and Facebook selects from your pictures and your posts to create an overview of the year. You click another button to post it to your page. Instantly, and I really mean instantly, mine was created and posted.

As a result of my work with various self advocacy groups, I have a significant number of self advocates 'friended' on Facebook. It has been with a sense of real awe that I've browsed through their Facebook years. The first I looked at was a young man, (anyone under 40 is young to me) with Down Syndrome from B.C. There were pictures of him hanging with friends, being with a girlfriend, competing and winning medals at a Special Olympics event ... pictures of him living and loving his life. Next up I time traveled through the year of a woman from the UK who had pictures of her marriage, pictures of her laughing with her parents, picture of her at work with co-workers ... pictures of her living and loving life. Then there was the teenager with Down Syndrome from the Australia who's year screamed 'I'm a teen!' ... fashion, and friends, and fun, and school, and dances, and volunteer work. I teared up looking at a fellow from the U.S. who lost his mother, his sadness was palpable, Facebook randomly chose to show the low point of his life, but it was followed by pictures of love and support.

A mere twenty years ago, if Facebook existed then, the pictures, if there were any, would have been very, very different. What I saw, as I browsed this week through the lives of so many with intellectual disabilities, confirmed what we all knew intuitively, community living matters.

While all this might make me grateful for the work done and for the opportunities now available to people with intellectual disabilities to live lives of inclusion and of value in their home communities, what made the difference for me wasn't the pictures of those with disabilities in those year end collages. There was something else.

I looked at the faces of those who were in the pictures with people with disabilities. Their families, their friends, their coworkers ... they were all people who, probably unbeknownst to themselves, who have been changed. Changed by being in the circle, being in the know - that people with disabilities can live and love life. Simply by living their lives well, by living their lives fully, people with disabilities are changing those around them. It's advocacy at it's most profound level. They are reaching into the hearts and souls of those who know and love them and switching on a light. A light that once turned on can never be turned off. They are illuminating the still startling idea that people with intellectual disabilities are fully human and live fully human lives.

Each of these people.

Each one of them.

Is busy changing minds and hearts and souls.

They are building a movement. A movement comprised of those who know the secret - that all means all, that each of us has value, that society benefits from diversity.

We are on the eve of something great.

Something powerful.

A movement of those with a light burning bright in their souls and who are not afraid of confronting darkness.

Baby's Sick

My power chair is sick. The doctor is coming to take a look at it on Monday, so I'm using it carefully and judiciously. I still need to get around and the problem with the chair is that the problem happens randomly. I can go out, go far, go up and go down and have no problem at all. But when it happens, it happens. Suddenly the lights behind my joystick start to flash and I come to a stop. I have to turn the chair off, wait a second, and no more than a second, and then turn it back on. 99% of the time that fixes the problem. The other 1% of the time the chair fails again, and again, then after trying a bit, it gets going again.

I worry, obviously, about having this happen in the middle of the road, but it doesn't tend to happen when I'm going long distances, it tends to happen when I'm stopping and starting. And thus, it happened, on my way into College Park, where I was intending to shop. The chair died just on entry, so I was past the first door but not the second door. There are other doors in, right beside the one I was using, but those aren't the doors that people use. So, I'm stopped, struggling to get the chair started again, and I'm surrounded by people's annoyance and impatience. The message that I'm 'in the way' and 'taking up too much space' surrounded me. I get these messages constantly, even when it's simply not true, but here - I was taking up space and I was in the way. My stress was combined with shame and mixed with panic. I thought I'd spontaneously combust.

But, I didn't.

I got it going again. And after that, it was fine, all the way home, and out again. True, I was riding on four wheels and a low level of worry throughout the rest of the day, but I got through it. Got home and parked the chair in it's normal place. This chair has served me well. I hope that it's not really, really, really, sick. It's expensive to repair - trust me I know this. And I've been told it's impossible to replace, they don't make this chair any more.

So I'll be using a ailing chair for a few days more, if you hear of a wheelchair stuck in the middle of Yonge and Bloor - that'd be me!

The Oddity of Being Other

As I sat down to write today's post, I thought of a comment made recently on a recent blog post that suggested that I spent a lot of time being offended. I was glad of that comment in a way because it reminded me to be cautious in how I write about my experiences as a disabled person. I actually don't spend much of my life offended but I'm aware it can seem like that. This blog captures moments of my life as a person with a disability that I'd like to comment on. Many of those moments, like the one I'm about to document, the oddity of life with a disability. I want to capture the social aspects that come with having a visible difference and a visible disability. I do this for two reasons. I do it for me, this blog is my disability diary, in that diary I write what I want to remember, I am also a service provider, what I learn from one interaction with a professional or one ride down the street, can teach me how better to understand the world of those I serve. I also do it for other people, either with disabilities or those who serve or parent those with disabilities. I can't tell you the number of times people say, 'that happens to me all the time too' or 'I have to think about how to prepare my child for this kind of thing.' That makes me happy.

My life is happy.

More clearly: my life is happy, albeit with moment of annoyance.

Now, for the oddity of yesterday.

We went to see Handel's Messiah at the Roy Thompson Hall on the afternoon of my birthday. While there are primarily older people in attendance there are some youngsters too. But as the crowd tends towards dotage there are a lot of people there with walkers and wheelchairs. The ushers let us in first so that we can comfortably find our seating without the push of impatience behind us. I got to my seat and, when the general public came in, a woman came to the seat beside me, she turned and saw me and saw Joe putting my coat away. "You don't have to worry, you have a nurse with you."

I wasn't worried and I didn't have a nurse with me because I don't need a nurse constantly at my side. Part of me was annoyed that the automatic assumption was that Joe was a 'nurse' and I was his 'patient'. I said, politely and conversationally, "Joe is my partner, not my nurse." She said, "No, I didn't mean him, I'm a nurse so you have no worries."

"But I don't need a nurse," I said, confused.

Now she's offended and sits down quickly, I'm sure I heard a harumph as her bum hit her seat cushion. She steadfastly ignored me for the rest of the evening. She made sure, a couple of times, that I noticed her ignoring me.

During intermission she headed upstairs, we stayed in the concert hall. Joe said, "You know she only mentioned she was a nurse because you are in a wheelchair, she wouldn't have said it to anyone else here."

"I know," I said, "it's like she wanted to give me something to write about in my blog."

Joe laughed and said, "That's what I thought too."

So, there it is. Another documented incident of how the wheelchair is a magnet for social inappropriate behaviour.

HBTM

Today is my 62nd birthday.

62.

These days 62 isn't considered very old. But for me, it's a miracle. Eighteen years ago I had my first of two catastrophic illnesses. I still remember the doctor telling me that I probably would not survive and that I'd best make sure that my affairs were in order. When your life expectancy shrinks to days and hours from decades and years, your perspective changes. Really changes.

This happened again, ten years later, and again I was asked to prepare myself for the ultimate farewell. It was then that I plotted out what I wanted to do if I survived. My career path completely changed as a result and my focus and goals were redefined.

Leaving the hospital, that I'd walked into, in a wheelchair meant only one thing - I was leaving the hospital. Joe and I worked together to incorporate this new reality into our life and, for the most part, succeeded. I see him and our life together, differently, because of these experiences.

I've had 'happy birthday' sung to me several times in the days leading up to my actual birthday. And, I realize, it is just that: a happy birthday. I'm glad to be here, I'm glad to have time to work on things that matter to me, I'm glad for each day that Joe and I have with each other. I'm glad of it all.

So today I'm 62.

And I couldn't be happier to be here, celebrating the day and giving thanks that I've been given two second chances.

Them, Not Us

I posted this video on my Facebook page because the behaviour of the woman in the video appalled me and I made comment about how this video demonstrates what's wrong with society today. For me, I was trying to say in my comment, this behaviour is dreadful but not surprising. The number of times that people step in front of me, to be served first, pretending not to see me but communicating that they don't value my time as equal to theirs. So, I see this as an act of selfishness which, in our time, isn't atypical.

However, in reading a lot of comments about this short video, I see that many, not most but many, people state flat out that this woman must have a "mental illness" because only someone with a "mental illness" would behave is that way. They are ignoring, of course, all the people around her. Those she high fived with and those who saw the thing happen with no comment or intervention. They must all be "mentally ill" too.

It distresses me that so many people place any behaviour, beyond that which is saintly, into categories of human difference. They must have a "mental illness" ... their sense of fair play must be "disabled." It's clear from this that, since they hold those of us with differences in dangerously low regard. Historically we've been seen as 'sinners,' 'deviants,' 'drains of society,' 'moral degenerates,' and 'god's punishment'. We are the dumping ground for any behaviour deemed unworthy of the morally upright class of typical, blemish free, upright walkers. If they can make her 'us' then they don't have to consider that they, too, might be capable of acts of pure selfishness. I'm not them so I'm not selfish. I'm not them so I wouldn't do that. I'm not them so I'm loved by God.

Let me state clearly that I don't see mental illness here, I see human selfishness and greed. I do not see these as diagnostic criteria from the DSM-V. I think of  this as kind of a subtle demonization of people with mental illness that continues ugly and hateful stigmatization.

This woman's behaviour is this woman's behaviour. In 20 seconds it's impossible to see anything more than that one moment. We can't even tell if this was just an impulse that was not typical of her. We can't tell if, upon reflection, she's mortified at what she'd done. All we see is a single moment.

That's all.

A moment that anyone could have done because all of us have moments of selfishness and greed.

A moment that is more typical than one might guess.

A moment.

That's all.

There is no need to use those few seconds to slap people with mental illness with blame, or to attribute to her character anything more than a bad moment and a bad decision.

Committees Everywhere

I was rolling up the street, minding my own business, when someone decided to mind mine. A woman, sitting on the street with a sign asking for change, saw me go by and said, "It's cold out, you need to dress for the cold." I didn't think she was speaking to me, why would I, so I kept on going. "You, there, in the wheelchair, it's cold out, you don't want to get sick, you should wear a winter coat." Now others, waiting at the light with me, are looking at me and I'm being evaluated on my life skills and calculations are being made as to my suitability of dress in relationship to my suitability for independent community access. Trust me, there are committees everywhere

 I may say it but many don't understand it: Disability isn't permission.

It's astonishing the degree to which people, often strangers but not always, feel they have the right and even the obligation to 'help out' by interjecting themselves into my life with their opinions and values. From what I've ordered at a food court, to how I get on an elevator, to what I should do to heal myself, I get advice. Advice and intrusion. I've spoken to parents of kids with disabilities and am told that they, too, sometimes get unwanted advice on parenting, nutrition, healing strategies, from people.

We're supposed to think of people who do this as 'kind hearted' and as 'only trying to help'. I suppose some of that is true, but I wonder why they seem to target those of us with disabilities or those with a family member with a disability. Maybe because they have learned it's inappropriate and unwelcome when done to others. I don't know.

But what I do know is that I wish, just some times, that people would just, and there's no nice way to put this, shut up. If you want to talk to me, say hello and engage me, in the same manner as you would with anything else.

As I write this I can still hear her voice, "A sweater isn't enough on a day like this!" And for those of you thinking, "Oh, my gosh, Dave went out with a sweater in the winter, maybe I better write him and tell him that it's not weather appropriate," hush. It's was a pullover winter coat/sweater worn over a thick black shirt, worn over my cloth light green shirt. I layer. That works for me. A winter coat doesn't keep me as warm as this combination. So, really, I'm good with dressing for the weather.

Really.

Please don't take away my community privileges.

In The Land of the Wealthy

I went in hesitantly. I shop here, maybe, twice a year. One of those times is at Christmas, because I traditionally buy a certain gift here for a certain person. I've done it for a few years now. The problem is that the store caters to the very wealthy. Without getting into a lot of detail, I stick out like a chip on a manicured nail. I get glanced at by staff as if they need to be ready to call security when I nick some very overpriced soap. If it takes forty dollar soap to clean you - you can't be cleaned.

After entering I head straight for where I know they sell the product I'm looking for. As I approached, two women, leaning together and giggling are coming out. As they pass, one of them says, "What a fucking queen!" the other one, "No, no, I think he's just a fairy that's lost her wings." They howled I need not state that class and money are two entirely different things. I am close enough to hear them but too far away to get to them to say something about what they've said. I let it go and in I go.

I see a fairly crowded room, stuff balanced on tables, tables in the middle of the aisle. It pleases me to see that they've left room to get around, even though it will be tight. Off to my right are two clerks chatting. They'd looked up at me, dismissed me as a possible customer, and went back to chatting. This has happened to me before in this store, it resulted in a letter of complaint, and a discussion with someone senior about people with disabilities as customers. Guess it didn't work.

Deciding that I'd rather have help finding it because I didn't want to have to wander around looking for it increasing the opportunity to knock something over. I call to the two clerks and one of them, reluctantly leaves their conversation and comes over to me. I tell him what I'm looking for and he points to a bunch of tables in a perfunctory manner. Then he turns to leave, he has no intention of giving me a hand. But then I notice that I've dropped something, I ask if he could pick it up. He does and then runs off, presumibly to wash his hands with expensive soap.

On one table I find a version of what I want, but not exactly what I want. I am now in a different section of the store and am noticed by a man who, I know immediately, is the man they were referring to on their way out. I hate the words 'effeminate' or 'flamboyant' when applied negatively to, in this case, men. As he approached me, without me asking, I just knew he'd been bullied before, he's being bullied still, but he, with amazing dignity, stays true to himself.

"May I help you sir?" he asks. I tell him what I'm looking for, show him what I've picked up and explain why it's not quite right. He tells me he knows just what I want. He walks to a shelf, picks up a small item, brings it over. He's right it's perfect. I take it. I thank him. I tell him that I'm often not seen as a real customer at the store because I don't fit the image of those who come into the store. His face sets when I say this. "There is no image of who comes into this store, you come through the door, you are a customer." I nodd and say, "Well, to you maybe."

I follow him to the till I hear him muttering, "Everyone deserves to be treated with respect ... everyone."

And that's what I should have told those two who mocked him. Even if I had to yell it over to them. He deserved better of them. He deserved way better of me.

Crisis, Need and Expectations.

Yesterday wasn't the easiest day. In fact, it was pretty tough. I'm not going to say much more than that because, while it might be a surprise, I practice what I preach: boundaries. So, enough said on that.

In the midst of the 'troubles' yesterday, I was rushing from one place to another. I was wrapped in worry and pursued by anxiety. I had been given a quest, and I was rushing to get it done so I could get back. I did my best to ensure that my upset didn't affect my mobility. I didn't want to run into someone because I was paying more attention to 'inside me' than 'outside me.' So, I was being careful.

Because I lecture and because I've produced training films myself as well as for others, I am sometimes recognized. Mostly this is a nice experience, getting to chat for a moment with someone who has seen me on video or read one of my books is great.

Mostly.

When I heard my name called out, I immediately panicked. I was so into my anxiety and worry that I thought, at first and quite irrationally, that someone was chasing me to give me bad news. Silly, I know, but our minds do what our minds do. So when the person introduced themselves and then started to talk to me about one of my books and having seen me lecture, I couldn't follow.

I told the person that I was having a bit of a life crisis, that I was in a hurry, and that I appreciate the sentiments expressed but I didn't have time to talk.

"That's not very friendly, brushing me off like that."

I was so stunned at the response that I simply turned my chair and headed off. A threat followed, "I'm going to tell people that I met you and you weren't very friendly."

Go ahead.

What concerns me about this is that if this person has read me or seen me, they work in human services. An honest explanation of 'crisis' and 'hurry' was met with - well, nothing really - because it simply didn't matter what my needs were.

You may hear I'm unfriendly.

But I'm not.

Sometimes I'm just someone caught up in that messy thing: life.

Executive Functioning Volume 1 Issue 3

This month’s copy of Executive Functioning - a newsletter for senior leaders in human service organizations - looks at the issue of Informed Consent. If you would like to subscribe, the newsletter is free and contains no advertizing, simply send an email requesting subscription to dhingsburger@vitacls.org .Today's post follows.

One Nice Thing

We even got there early. But not early enough. We see a lot of movies and we always go to the matinee, it's cheaper, there's fewer people, and the timing fits in with how we organize our days on the weekend. We went to see "The Imitation Game" and were confronted with a wall of people all heading to the same movie. We got the last two seats. The fellow, whose sold us many tickets in the past, joked that my seating was pretty much guaranteed, where Joe would sit was up for grabs. We received assurances that if we couldn't sit together we could return our tickets and go to a later showing.

I pulled into the wheelchair seat. An older man was sitting in the companion seat and he had stuff piled up on the seat next to him. The theatre was packed. Joe got me in and then headed to the toilet. I leaned over and asked the man if he could move over one seat so that Joe could sit next to me. He was startled that I was talking to him and it took him a few seconds to focus on what I was saying. I had to explain again.

He pointed to a seat in the next row saying, "I could sit there." I said that he could or he could simply move one over. He thought about it for a second when a person behind said, "Why are you asking him to move? He has a right to his seat." I turned to her and said, "He does have a right to his seat. The seat he is in is companion seating for those of us in wheelchairs. I will need assistance during the movie, I don't want to be whispering across to my partner in order to get his attention. Would you like the exact details of the assistance I will need or have I quelled your assumption of my being a selfish cripple?" She sat back like I'd offended her deeply.

The fellow got up and said to her, "I really didn't need your help in dealing with a reasonable request from this nice young man." Then he turned to me and said, "If you do one nice thing, each day, for someone else, your life will not have been lived in vain." I agreed. He moved to the seat he'd chosen. I took off my jacket and put it on the seat next to me, saving it for Joe's return.

After the lights went off, the only drama we experienced was on the screen.

Thankfully.

Kings - And The Taking of Power: give yourself the gift of this book

Photo description: Reproduction of book cover showing two hands, one gold coloured with the text 'good kings' over the other red coloured with the text 'bad kings'.

Several months ago, browsing through my local book store, my eyes were pulled to a book called, Good Kings Bad Kings. I picked it up read the back, purchased it, brought it home and put it on the 'will read one day file.' I wanted to buy it because its a book wherein almost every character has a disability and those characters speak in their own voices (rather than being spoken about by other characters). I want to support this kind of literature.

But.

I was wary, for two reasons. First, authors, in my experience, seldom get the voice right in books written with disabled characters, much in the same way that non-disabled actors often get mannerisms but seldom get 'voice' when playing someone with a disability. I was also concerned because the cover told me that the book had won an award for 'socially engaged fiction.' Socially engaged fiction, oh my. It's a book that's supposed to be good for me. Duty done, bought. Reading it, though, that's another story.

And as it turns out, it is another story, indeed.

Joe and I were heading out to Boston for a few days work and I was almost finished the book I'd been reading. Joe asked what other book I wanted and I told him to grab the top book on the pile stuffed at the far end of my bedside table's bottom shelf. He grabbed, Good Kings Bad Kings. When I pulled it out of my wheelchair bag and saw what had been brought, I almost protested.

Then. I started to read. The author of the book is ambitious. She sets the story in a nursing home full of kids, with a variety of different disabilities, who are all under the age of 21. That is one wild set of idiosyncratic voices coming from entirely different ways of experiencing the world. The book is set up in chapters, each from the point of view, and in the voice of, a different character. One of the characters presented early on in the book shocked me.

Shocked me.

I knew her.

I knew her intimately.

She expressed thoughts and ideas about her experience with disabilities using words that I have used. My experience of disability has, at points, mirrored hers. I couldn't help it. I flipped to the back of the book to read about the author. I never do that. I don't read forwards and I don't read 'about the author' ... so, I'm allowed my own idiosyncratic approach to reading a book.

Meet Susan Nussbaum:

Picture description: Author Susan Nussbaum seated in a power wheelchair.,

 Now, though I don't know, I'm guessing that Ms Nussbaum doesn't want to be known simply as a 'disabled author.'  However, in this case, with this book, that actually helps. I suddenly knew how she got so much right. Forgive me for saying this but there are experiences had by people with disabilities that I don't think people without disabilities can grasp. And here were some of those experiences, on the page, in a story, about disabled characters with real voices. I need to admit here that I was caught, on more than one occasion with ablist assumptions in my head that got smacked down right smartly.

My only quibble is that I found that the voices of those with intellectual disabilities were, from my years of experience in working with people who experience that disability, sometimes forced and rang a little false. Not always. But enough to cause me notice.

Driving by any nursing home, one might see a sedate looking place, and one might imagine it full of compassionate staff giving wonderful care to grateful recipients. You will never think that again after reading this book. Not only did Ms Nussbaum get the voices right, she also captured the hierarchy of care and the abuse of power, in a myriad of ways, that go on under the guise of care providing. Those sections of the book were letter perfect, and, of course, the hardest to read.

There is also triumph in this book. But not the typical triumph you read about when books are peopled with those who have disability. Mount Everest isn't scaled once. The triumph here isn't over disability, its over ....

Nope. Not gonna tell you. For that, read the book.

Are you a disabled reader? Got some disabled reader friends? Got some non-disabled friends who are into books with fully fleshed out characters? If so, this might be the perfect choice for a gift for yourself or for someone else.

It was for me, simply because, about midway through the book, I felt completely gifted this experience. I may have bought the book. But, really, Susan Nussbaum gave it to me. Like, I'm guessing, she wants to give it to you.

Cold x 2

So.

I was just over one cold.

And.

I got another.

Don't you just love the holiday season?

Please forgive me as I take a break for a couple of days.

Thanks.

Who? Where?

Yesterday we drove out of Boston on our way to Syracuse. We'd checked the weather channel earlier and were told to expect rain. We didn't get rain. We got snow, heavy snow. It took us almost two and a half hours longer to get to the hotel than we expected. It was frustrating looking at the Ted, our GPS and seeing that he predicted a 9:30 pm arrival time, calculating that meant that we had two and a half hours to go. An hour later, driving carefully, we still had a two and a half hour drive and now the arrival time was 10:30. We got to think that we'd never catch up and we'd be driving forever.

However, we finally made the hotel. Nothing was plowed and it was hard to negotiate the parking lot. But then there was another problem. There was no sidewalk. The van we rent is great but, for my kind of chair, the ramp is a bit steep. It would be fine for a scooter but for the power chair, it's not. I tip forward when the grade drops off too quickly. So we drove around looking at other places that might have sidewalks. It was helpful, we thought, that the hotel was part of a large outdoor mall.

Not a single sidewalk to be had. However when driving back we were turning towards the hotel and I noticed that we'd went down a sharp bump from one lane way to another. We were in a giant parking lot and there was lots of room so I directed Joe to pull up beside the sharp drop and put the ramp down there. It worked perfectly. I was just about to go down when this really huge truck pulled up and came to a stop. The lights looked angrily at us. We were in the way. Neither of us understood why the driver was doing this. There was ample room, really ample room to drive around us. And when I say ample, I mean at least 60 feet and 10 acres of room. But the truck stayed there, letting us know that we were in the way.

We'd driven for hours and hours in horrible weather. We both just wanted to get to the hotel. We both had to pee. There was no way we were going to move. I asked Joe to simply wave him around us, he had plenty of room to go around us. In fact twenty or more cars could arc around us at the same time. But Joe just said, "No. It's not hard to figure out." So we went about our business of getting me out. Eventually the truck drove round us, we could feel the hostile stare of the driver, we didn't care. We don't like being in the way, but in this case, the drive had to work to make us in the way.

We got in. My chair powered through the snow, The room felt wonderful, just being there and being safe. As we talked about it we remembered that throughout the trip, drivers helped drivers out. It was like we were all in this together. During one really bad patch the lead driver put his flashers on so that all of us could see the path he was on and follow in his wake. It was nice.

But one person in a huge parking lot chose to be inconvenienced.. Choose to make a problem where none existed.. We aren't sure why. We don't care why. Sometimes, it seems, it's best to just let it go and think of it no more.

Truck? Snow? Lights? What the hell are you talking about?