Sunday, December 21, 2014


Today is my 62nd birthday.


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.

Friday, December 19, 2014

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.

Thursday, December 18, 2014

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.


Please don't take away my community privileges.

Wednesday, December 17, 2014

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.

Tuesday, December 16, 2014

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.


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.

Monday, December 15, 2014

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 .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.


Sunday, December 14, 2014

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.


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.