Tuesday, August 31, 2010

Breaking News: Fox News

I have just given permission for my blog post The People Who Are will be up on the Fox News Site tomorrow. Now, here's the thing. They may change their minds, I don't know for certain. They just said that it will probably be there tomorrow. To see if they decided to post it and the reaction it gets, go to the site and then click the Opinion button.

See you tomorrow with a new blog post on inclusion.

The Sherpa

I noticed them go by. Joe and I were sitting having a cup of tea on a patio somewhere in downtown Boston. It was lovely as we were completely shaded and there was a tiny bit of a breeze. The three of them slowly walked by. He was a distinguished looking grey haired man who looked as if he was new to, and uncomfortable in, a wheelchair. Two young women were with him, they all looked enough alike to suggest they swam in the same gene pool. There was a brittle silence amongst them.

About half way through my green tea they came out of the store they had gone into. One woman was pulling a large square box on a dolly, a large, long, rectangular box lay resting across the arms of the wheelchair. They slowly made their way towards us. When they got close enough, I called out to the guy in the wheelchair, 'You know, man, they are totally using you right now.' He looked at me startled. I said again, 'Really, man, they are so using you.' Slowly his mouth formed into a small then larger smile. He got and he liked the joke.

The woman with the dolly walking ahead turned and there was a gasp from her. She said, under her breath, 'I thought he'd forgotten how to smile.' As he was passing he said something that I couldn't hear. But the woman pushing the chair did and she screamed with laughter. He was still looking at me and I knew he'd got a good one off because now he was chuckling. Sometimes I laugh just because someone else is laughing. Suddenly Joe and I were curled up laughing.

They made their way down the street.

Sometimes I regret my impulsively.

Sometimes I don't.

At that moment, I absolutely did not.

Monday, August 30, 2010

10 Rules of Engagement: How To Self Adocate

Again!

Accessibility promised not delivered.

Again!

Frustration and anger.

Again!

Confrontation and resolution.

If you are going to have the audacity to have a disability, you are going to need the ability to effectively advocate for yourself. It is imperative that you know how to use your voice, how to control your temper, how to ensure that you control the flow of the confrontation and resist the impulse to be placated or bought off. From me to you, my tips on advocating when angry.

1) Breathe: It is important to think through the situation, you need some clarity, take a breath and slow down. The heart is probably racing, the blood pressure is high, the situation has caught you unawares. You need to be able to be firm, not hysterical. You need to be plain spoken, not vulgar. You need to be clear on what the issue is, not jump from topic to topic. So take a breath, when you know what you want to say, start - you have the opportunity, sometimes, to control when the confrontation happens. If the timing doesn't allow that, take a breath anyways, focus your mind quickly and ... start.

2) Respect: You want respect not pity. The issue is almost never your disability, it's inaccessibility. Make this about their attitude, their behaviour or their environment not your disability. Remember we are most often disabled by external factors. I once flew across the ocean, got in a car and drove 200 miles, only to arrive at a hotel and suddenly become disabled because they didn't bother to honour my request for an accessible room - they disabled me. So keep it clear, this is about them primarily.

3) Don't Barter: Often you will be offered a free room, a free meal, a certificate for the future. OK. Fine. But that's not good enough. Let them know that you are not complaining because you want financial compensation, you want moral compensation. You want to ensure that this doesn't happen to another person with a disability, you want the situation rectified, you want to know what they are going to do to change things so that accommodation offered is given. You want a 'right now' fix and a 'long term' solution. I get the impression that most managers think you are just doing this for a free ride - let them know that's not the case.

4) Respect: Yeah, this is here twice. don't hammer a clerk who has no power and is paid minimum wage. Speak to the manager. Even then, don't do to them what you don't want done to you - don't swear at them, don't call them names, don't cast aspersions on their character. This drives them nuts! They want a reason to dismiss you, don't give it to them. Be angry, be frustrated, be firm but be respectful at the same time. Even if they are not understanding or, ultimately, accommodating - don't give in to the urge to 'poo on their heads'. Go higher, go postal - write a letter or an email. They are more afraid of those who go forward with complaints based on anger and reason rather than anger and vitriol.

5) Power: Manage what power you have well. Saying, "I'll never do business here again," means that once you are out of the door - problem solved. Saying, "When I come back I don't want this experience again," means - oh, my, this is someone who will be back and will be expecting change. Too, speaking loud enough to be heard by others is great, they don't want to look like they are upsetting someone with a disability or a parent of a child with a disability. But screaming just pisses everyone off, even those who would be your allies. As well, create enough of a problem that they can't get on with other things until this is settled but don't be purposefully obstructive to others. It unsettles them if you say, 'I'll wait while you deal with this other customer.' The other customer will appreciate it and your credence as an opponent grows.

6) Platitudes and Apologies: Don't let them say, 'I understand' ... because if they do not have a disability, do not have a child with a disability, they don't understand. I hate it when non-disabled people use that line on me. They can imagine what it's like to live using a wheelchair but they don't know and because they don't know they don't understand. Stop them with a clear, 'You don't understand, don't patronize me!' They are using some crap training to try to get you calmed down and on side. Don't let them do it. Apologies are attempts to derail discussion and make it look like you've been heard - the only apology worth anything is change. Be clear on that.

7) Respect: It's back for a third visit. Always speak respectfully of your life with a disability or your child with a disability. Now is not the time to pull out the word 'cripple'! Don't go on about how hard life is for you. That makes disability the issue again. Speak of yourself and your life with respect - if you go for pity, you move them into a position of superiority. Then what they give you will be out of their magnanimity rather than because you are due your rights as an equal.

8) Settle: They say 'never settle' ... I disagree. If something can't be done in the moment, settle for a promise and a plan for something changing. If something can be done, once it's done, it's done. Carrying on and on about it once it's over is counter productive and makes it seem that all you are doing is attention seeking.

9) Close: Finish when you are done, this should be at least 3 or 4 minutes past their toleration. They should be uncomfortable with the interchange. At some level you have to make them feel. Learning happens when emotions are put with facts. You want them to fear this happening in the future, you want them to do everything they can to avoid other firmly angry, appropriately aggressive disabled people. So, control when it ends. Leave the situation with calm and dignity, storming off makes you look like a two year old. Be adult all the way through, right to the end.

10) Follow up: Go postal, as mentioned earlier. Write an email, write a letter, communicate in some way that you expect change. You will, when angry, be tempted to say, 'I'm going to call your head office.' The reason you say this is that it is a really good idea. Don't threaten and then not do - they will come to not believe that you will have the gumption or the energy to follow through. It takes only a few minutes to put thoughts down on paper or in an email message. Take the time and, of course, copy it to the establishment in question.

I've gotten really good at confrontation, I don't like it, I don't want to do it, but I'm disabled, so I have to use my voice over and over again. It's part of what it is to be different in a world that honours uniformity. So, what tips do you have because I'm sure I'll have to do this ...

Again.

Sunday, August 29, 2010

Bob and His Contest

I got so excited when I saw them, I just simply forgot. In the joy of discovery that only those with the true 'shopper gene' have, I rushed to purchase. I pictured my pleasure being ultimately reflected on the face of two others. Gift giving is cool, particularly gifts for no reason - just because. What did I find? I found six tins of sugar free mints each with a different logo from a different British Football Club: Chelsea, Arsenal, Manchester United, Celtic, Liverpool, Rangers. We were visiting Mike's son, Joseph, who is a huge football fan and were going to give them to him almost right after buying them. The other set I bought for Bob, the superintendent of our building.

Only after buying them and rolling out to the car did I realize that Bob died a few months ago and our building has a completely different set of staff. Odd, though, how in the joy of the moment, someone came alive again, vividly alive. Odd, though, how people stay stuck in our minds. How people, unstuck, live again for a few moments. I remembered sitting waiting for the WheelTrans bus outside chatting with Bob and having him remember his time in the UK and how Football was something he really, really, enjoyed.

So I had a gift of six tins for Bob. Somehow, I think Bob is somewhere laughing, both at my folly and at the sheer pleasure of being remembered, again.

What would Bob have me do ...

I think he would want me to give them to someone who loves Football. So if you are a Football fan anywhere in the world, write a comment and I'll put everyone's name in a hat and pull out a winner and send them to you.

This reminds me, 'Home Safe: Keeping people with disabilities safe in services' has just been released. I owe someone a copy of it, someone who won a cover contest, you know who you are - could you send me your address again and it will go out in the next days mail. Sorry about this but I am not only physically disabled, I am also organizationally impaired.

Good luck to those who enter ... how about this, I'll take entries for four days.

Saturday, August 28, 2010

Fathers and Sons

Riding the transit system in the 'special bus' is interesting. Given that every morning I go a different route, I get to see different parts of the city. Given that every other person on the bus has a different life, we go to vastly different places. I now know of services that I never knew existed. It's cool to be plunged into the diversity that is disability.

The other morning I was on the bus with two women. One in a power chair, the other with a walker. Neither were chatterboxes and responded with civil grunts to my 'Good Morning'. I am constantly reminded that being a morning person I can be outright annoying. We dropped of the woman in the power chair at her work place and then we drove for a very long time to get to the next drop point. Here we pulled into a big parking lot and we drove by a 'Pain Management Center'. The bus turned around and then pulled right up beside it's door.

The woman with the walker got up and I could see in her careful movements a long history of living with pain. She glanced at me and wished me a good day and then let the driver guide her down the ramp. I looked out then and saw a father and son heading towards the door. The boy turned to look at the woman getting off the bus and I saw that he was maybe 6 or 7 years old. Even so, he walked old. He walked like little boys should never walk - as if life itself hurt. His dad, a big strapping man, was being bright and cheerful and joking with his son as they headed towards the door. The boy turned to his dad with bright eyes and then for a moment stopped and laughed at something his dad said. I'm sure I saw tears form in his father's eyes as he watched his little boy just stand and laugh.

The laughter over the long, long walk to the clinic began. They, father and son, made that walk together as I watched.

It's not fair.

We shouldn't live in a world where 6 year old boys live in pain.

We shouldn't live in a world where father's watch their children suffer.

But we do live in that world.

Pray God that we all have someone walking beside us making us forget, for just a moment, while we laugh.

Friday, August 27, 2010

Count Down and Out!

I can barely type!

My very fingertips are sore.

For some reason, beyond my typical reason, I ordered a wheelchair aerobics DVD from Amazon. It came the other day and I decided to try it yesterday morning. My. Oh. My. The 'warm up' ended with me 'worn down'. I quit with everything hurting. How does it come to be that stretching hurts! I didn't know that a 'head roll' could be so noisy. So this morning I got up with the intent of getting past the warm up and into some of the exercises. I made it about 10 minutes longer than yesterday and then had to stop.

This surprises me a little bit because I can push my self a fairly long way. Over the last few months I've been concentrating on asking for Joe to push me less and for me to push over carpet and up hills more. I figured it was my only exercise and I should at least try. Now I can easily push myself right from the apartment down a carpeted hallway, through two sets of doors and down to the road and be sitting waiting when the car pulls around to pick me up. This is a vast improvement. I think that's what gave me the courage to order the DVD.

But. My. Oh. My. This perky blond woman looks out at me from my computer screen and then tortures me with 'three more' ... and of course 'three more' is actually more like six or seven. Never let an aerobics instructor do your taxes! My perky instructor doesn't even break a sweat nor look like her shoulders are screaming in pain. My less than perky self, however, is grunting and groaning and forcing my arms to do what she does.

One of the nice things about getting up ridiculously early in the morning is that there is no one around to watch me punch the air, three more, two more, one more, let's do it again ... So I sit in the faint glow of the computer screen doing head rolls and shoulder rolls all so that I can roll more effectively.

My favourite part is where she talks about pulling your stomach in so that my belly button touches my spine. Um, got a yardstick dearie?

I've got to go shower and then get to the bus and hope that the drone of the engine will drown out the echo of ...

three more, two more ...

Thursday, August 26, 2010

To Jennifer From Dave

Dear Jennifer Aniston,

I wasn't going to write you this letter. Really, I wasn't, even though readers of this blog asked me to publicly and privately. Most wanted me to put into words the anger that they felt towards you and the controversy that your insensitive use of 'R#tard' had sparked. To me your lack of public apology told me everything I needed to know about you. Until yesterday I thought I had said all I had to say.

But then I learned of him.

Of Ernie Hernandez Jr.

You don't know his name do you Ms Aniston? That's no great surprise. Ernie lived his life quietly being distinguished only by his desire for do a good job, his love of his personal independence and his manner of contributing to the lives of those he cared about. But his freedom came at a cost Ms Aniston, do you know why? Well his mother reported that he would come home and tell her about people in the mall teasing him, taunting him and calling him 'r#tard'. He was fearful but his fear didn't stop him. He had the kind of courage that you and I can only dream of. He wanted to live in the community and he would do so even though there were bullies out there who attacked his very existence.

You may wonder Ms Aniston what this has to do with your casual use of a word. Well, here's the thing. You made the word 'cool' to talk about, your defenders loved the opportunity to tell everyone that you had a God Given Right to speak your mind. Here's some of the company you find yourself in, I am not altering or censoring the words written, their impact may hurt other readers, you, of course, may not care:

You people are retards that are spinning this into something offensive and not politically correct

This PC has gone too far. It is friggin retarded. Unbunch your panties you liberal pricks.

i act like a retard so come slam on me now....piss off everyone is human and says and does things in there life thats others might not think are "right" fredom of speech people we are in AMERICA.

You all need to fuck yourselfs and the retards you rode in on.


Lovely.

Does that give you a sense of what Ernie Hernandez Jr. experienced when he was out for a walk or meeting with friends? Does that give you a sense of what happens to people with disabilities? You see no one much takes the word 'r#tard' seriously. No police officer, few teachers, probably no security guards would intervene. It's a word that everyone uses, even America's Best Friend, Jennifer Aniston. You normalized hate speech. You took a hateful word and trivialized it's impact. You brought out the hate hyena's to bay all over the Internet, all over neighbourhoods, all over schools.

Do you know what happened to Ernie Hernandez Jr., Ms Aniston?

Well the police report stated that the murderous attack on him was violent and vicious. He was stabbed multiple times. He died in the community that he had fought to live in. He died after reporting time and again about being called names, being taunted, hearing 'r#tard' echoing on streets and in passageways.

Modesto California has lost a citizen.

We, people who have disabilities, have lost a brother.

Ms Aniston, you and your thoughtless, meanspirited, language made his life a little harder. You have made our battle longer.

I did not know Ernie, but I mourn him. I mourn that he died too young. I mourn that he experienced social and verbal and finally physical violence. I mourn that the world he wanted to live in did not embrace him.

Ernie, brother, rest well.

Dave Hingsburger

Wednesday, August 25, 2010

In Good Hands

(Today we have a guest post from a friend of mine - Susan. She wrote this a while back and I've asked her permission to reprint it here. I like this post a lot. So, enjoy another voice today.)

"I'm scared, Mom."

He was scared all right. I could see it in his eyes and in his body movements. We were walking through the new Terminal 1 at Pearson International Airport. He had just checked his baggage and we were heading toward the departure gate. He was wearing the new jacket I had bought him at Costco on the way to the airport. It was the top half of a rain suit, perfect for English weather. The bottom half was safely stowed in his duffel bag and on its way to the belly of the giant air bus he was about to board.

"I'll be praying for you," I said. "You'll be okay. God's brought you this far..."

"Yeah," he said with quiet resolve. "I'm scared, but I'm still going…"

David had just finished his second year at Queen's University in Kingston. While at school that year, he learned about the opportunity to go to England for a study term and had thoroughly and carefully explored the possibility. He applied for a bursary to help with the cost and filled out all the forms on his own, calling us often for reassurance and affirmation that this idea was a good one. We talked to him about the difficulty someone on the autism spectrum would have getting through airport security, finding the right seat on the right plane, and then finding his way around a strange airport in a strange country and ending up, finally, at the right destination but where everything was new and there was no structure in place ahead of time. We thought it would be best if one of us traveled with him. David knew he needed some help, but he didn't need our help. Instead he approached Disability Services on the Queen’s campus and got the name of someone his own age who would also be going on the trip - someone who would watch out for David and was willing to provide any support he might need. "Peer support". He was identifying for himself what his needs were and building his own support system around himself. Yup, our Davie was growing up.

We met El-amin at the airport, just under a massive grey pillar marked "J" and next to the Air Canada counter. It was still half an hour before they could register for their boarding passes so we had a bit of time to get acquainted with him and his parents. Like me, they had come along to see their son off. El-amin was an only child, I soon found out from his lovely, doting mother. Her head was elegantly wrapped in a beautiful scarf. El-amin was very self-assured and told me that he was a philosophy major, just finishing his third year.

"Do you believe all that stuff they teach you?" I smiled at him.

He laughed in reply. "No, not any more. I did during my first year, but it didn't take long to realize that all these cool things that sound like the truth, can't all be the truth. You have to sort things through for yourself."


We visited for a while and then his friend Emily arrived who was also going on the study trip. She was just as friendly and accepting as El-amin. I stood and visited with her parents while the three students procured their boarding passes and then stood in line to check their baggage.

We parents were all excited and obviously apprehensive a little about sending our children across the ocean, even if it was just for six weeks. We exchanged stories and got to know each other a bit. El-amin and Emily soon led David through the baggage checking process and I was relieved to see them take his bag across the counter, having feared all this time that it was overweight and not knowing what we'd do if it was.

Rejoined by our children, we left the baggage checking area and drifted over to Gate 8, where we would be saying our final goodbyes. We were joined by a few other students who were on the same study trip and knew each other from school. We all hung together for a bit longer, looking at the planes out the window, and then suddenly everyone was hugging and kissing, and saying their farewells.

I couldn't believe what a warm and wonderful young man was El-amin. His parents told me that one of his jobs on campus was to welcome International students helping them to adjust to life in Canada on a strange campus. He seemed instinctively to have just the right idea of how much support David needed, while at the same time giving him enough space to maintain his self-esteem.

"C'mon, Dave. This way." El-amin and Emily waited for David to catch up before they all three disappeared behind the sliding doors where they would undergo their security checks. David turned to give me a characteristically stiff hug and then he was gone.

We parents all looked at each other, suddenly bereft of our children. I could see worry and concern behind their smiles and in the reassuring comments they made to one another.

"They'll be all right," they kept saying over, and over.

I had a sense that I wasn't quite fitting in to the situation somehow. I was actually feeling a bit guilty that I wasn't more worried - like these other parents so obviously were. Here was my kid with a fairly significant disability headed across the ocean for six weeks. Wouldn't a "good" parent show the same concern as these others? My kid has a disability and I wasn't worried. Yet, all the parents of these "typically developing" kids obviously were.

I thought about it as we all parted ways and I headed back to the parking garage, but it wasn't until I was telling the story to my friend Belinda on my cell phone on the way home that all my feelings began to gel. David had matured enough to realize what kind of support he would need, and took the steps to arrange for it himself. God had provided El-amin - and Emily – the perfect traveling companions for him and would he not meet all of his other needs as well? What did I have to worry about, really?

David is often overwhelmed with anxiety sometimes to the point of being temporarily incapacitated. He struggles in social situations. And he was headed for England. We, his parents, who had been the primary buffer between him and the rest of the world, were staying behind. But unlike the other parents in that terminal, I was confident my kid would know Who to call on in times of trouble when I'm not there. And I know exactly in Whose hands ultimately he is in.

Godspeed, Davy-boy!

Tuesday, August 24, 2010

Small C, Big P

Something's been bothering me. I've tried to push it to the back of my mind, primarily because of the pigs. But last night as I lay in bed trying to sleep it kept raising into my consciousness and even pigs swimming a synchronized ballet couldn't push it back. Nanny McPhee (small c big p).

Clearly I've changed between seeing the last one and the new one that's just opened. I loved, without qualification, the last one. I did this one too, for about a day. I laughed, like a delighted child, at the antics of the pigs and at the burping crow and at the pen stealing elephant. I liked the idea that children were learning lessons which were taught with magic and fun and love. I was thrilled by the cameo performances of some big stars, Fiennes deserves an Oscar for his few minutes on screen.

But.

Perhaps it's best to tell you a bit about the plot (no spoilers here). Nanny McPhee (small c big p) shows up and she's got a distinctive face. We're supposed to think it ugly. She's got moles, a unibrow, a thick nose and one tooth that escapes her mouth only to take rest on her lower lip. People make jokes about her appearance yet she goes happily on her way respected by all who know her. However, as the children learn their lessons she becomes more traditionally attractive, moles disappear, eyebrows separate, magic rhinoplasty alters her nose and so forth. By the end of the movie she has a traditionally beautiful and somewhat radiant face.

I was delighted to see her again when she showed up on the screen. I was delighted moles and all. Knowing who she was from the last film, I found myself liking that face - the first face. I already knew that she had a beautiful character and that character shone through her eyes and informed mine. When the moles began to disappear I was disturbed. I closed my eyes and wished them back but, no, they were gone. As she grew more conventionally attractive I grew more disenchanted with what I was seeing. I didn't NEED Nanny to change to find her beautiful. I didn't NEED her to be anything but 'Nanny In The First Place'.

I know, I know, films and literature constantly say, out loud, that beauty is only skin deep - but then most stories give a different message. Ugly is criminal, ugly is deviant, ugly is repulsive - it's beauty, not the beast, that is holy. Isn't it possible that attractiveness is about more than clear skin and sculptured brows? Isn't it possible that we as viewers, could have come to see her become magically more beautiful WITH moles - wouldn't that be more like the miracle of true transformation. That the appearance of beauty happens in the heart of the viewer rather than on the face of Nanny McPhee (small c big p).

Emma Thompson, the star of the film also wrote the film. I challenge her to make Nanny McPhee (small ... oh you get it by now) part 3 - but this time do something magical. Let her true beauty stand out - let her in dignity be 'Nanny With The First Face.' It's a face we already love - we don't need it different.

Monday, August 23, 2010

The People Who 'ARE'



It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?

It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.

The people who 'ARE' what the 'R' word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Sunday, August 22, 2010

The Battle!

Three days ago we went to our local grocery, which had just opened after going through a several month closure due to renovations, and I noticed something slightly odd and yet wildly infuriating. They have 7 or 8 checkout aisles, one of which is designated as a wheelchair lane. It's a lovely lane for me especially when I am in my power wheelchair. I'm wide, it's wider, the lane is widest - a lovely fit wouldn't you say. It's so much better than what they had before. So, anyways, back to being annoyed - which through a mammoth act of will I manage NOT to be all the time. They had all the aisles open, that's ALL of them, except the wide wheelchair aisle.

Now it doesn't take a lot of deep thought or even a strategic plan to figure out that if only one is open it should be the aisle that EVERYONE can use. But, no, they were all open EXCEPT the one that everyone could use. I ask to speak to a manager. He comes out. How do people that young get to be managers, he seemed be be seven days older than sperm. Anyways I talk to him and explain the principle of access for all and that if one lane is open it should the the one that everyone can use. He nods gravely and says, 'I'll get that fixed by the afternoon.' This was first thing in the morning and it was going to take him several hours to move a cashier from one terminal to another. I nodded stupidly because I was at a loss for anything else to say. He did promise me though that from that day forward the accessible aisle would be open. OK.

So we go back today after lunching with a friend. We'd had a lovely time at lunch, laughing, talking, and solving the problems of the world. So we went shopping with a lovely feeling of having had good food and better conversation. Arriving at the store I see ALL the aisles open except the ONE for ALL. I ask to speak to the manager, hoping against hope that I was going to get the same guy so I could yell. But the only manager on was the grocery manager. He came over to speak to me and I pointed out the 'problem'. I asked, 'Is this the store's way of communicating to people with disabilities that you'd rather we not shop here?' He assured me it was an oversight. I told him that I'd already made this comment to the manager a couple days before.

He had the aisle open within a few minutes and I was able to both shop and check out.

You know what kind of pisses me off. There are so many bigger battles for us, as people with disabilities to fight, that we shouldn't be worn down by stating the obvious to the oblivious. We shouldn't have to whittle common sense to a point at one end and then use a mallet to smash into the ears of those who neither think or, it seems, listen. We should be fighting the big battles of rampant un and under employment of people with disabilities, the rampant physical, sexual and financial abuse of people with disabilities, the constant nasty remarks of friends like Jennifer Anniston. We have big battles but we also have strong wills and loud voices - but we grow weak and hoarse trying to pay for our freaking groceries.

Sometimes I simply despair ....

Saturday, August 21, 2010

A Blog For A Slow Day



I get asked a lot of questions about being in a wheelchair. The most common is about my gloves. Why do I wear them? Is there something wrong with my hands too? Wouldn't things be easier if I didn't wear gloves because then I wouldn't have to take them on and off, this one is usually asked, impatiently, when I take my gloves off in a line to pay and then put them back on when I leave.

In all my borne days I would never have thought that gloves were such a conversation starter. Too, I find it interesting that people will just out and ask me questions about something that could be personal without a moments thought about intrusion into my day. No one ever, that's not ever, asked me anything about my clothing before I sat down in a wheelchair. But nonetheless, gloves seem to be a curiosity.

So for those desperately wondering. I wear gloves for the same reason you wear shoes. For transportation, for protection and for comfort. I also use them for brakes. I use them when I want to accelerate. They aren't, though fashionable, a fashion accessory.

All this is in aide of telling you, especially those who push their own chairs, about these gloves I found. I'm on my 5th or 6th pair of gloves since I started using a chair. When my last pair ran out I was in the States so we stopped at a Wallmart (sorry) and I went looking. I found these wellslamont gloves. I tried them out in the store and it was awesome. My grip on the wheel is stronger, my ability to brake is increased to the point that I can go down really steep grades. They are perfect for wheelchair use.

I bought a set in every colour. They are really durable and I think they'll last me at least several years. So bring on the hills. Bring on the long stretches. I'm set to go ...

"Hey, so why do you wear gloves?"

And odd question, don't you think, from someone wearing shoes.

Friday, August 20, 2010

Hair Today

Here's something weird.

I have to go get a haircut this afternoon. I go to a barbershop a couple blocks from home. The first time I went there I got my hair cut by a woman who did an OK job. Just OK. Now, I don't have much hair, so OK isn't really good enough. But now, every time I go there she insists to the other barbers that she alone is my barber. I'd really like one of the others to have a go but don't have the gumption to say so. Without a doubt, today, I will get an 'OK' hair cut.

Yet I'm the guy who writes politicians and 'letters to the editor' and makes phone calls to assert my point of view. To me that's much easier than saying, 'I'd rather someone else cut my hair.' I don't know why that is ... I can't even imagine saying that to her. I don't want to hurt her feelings even though I don't like her work. Like I'm sure she spends any time worried about me at all!

Assertion is a funny, funny, thing. For me it's easier to assert myself over an issue or a point of view than it is for something personal. It's easier to protest over the treatment of someone else than it is about the treatment I get. In fact some of those on the 'other side of the issue' might find me a bit of a bulldog when it comes to sparring over an issue. I admit, it's true, I can be pretty passionate about what I believe - I just can't do it with a barber! I'm sure some of you readers are the same way.

So barring going to another barber shop entirely - which is hard because I go where I go because it's the only accessible shop that doesn't charge me an outrageous fee, I'm getting the same cut from the same barber. Some of the places near me charge 30 bucks for a hair cut - that's, like, 25 cents a hair. I tried negotiating at one place and the fellow looked down at me, which happens a lot when you are in a wheelchair - both literally and figuratively, and said, 'We do quality work.' Well, yeah but cutting an acre lawn is surely more expensive than trimming a postage stamp yard.

Oh well, today is hair cutting day.

And if nothing else, I got a blog out of it.

Thursday, August 19, 2010

Breaking News

I'm sitting here crying.

Actually crying.

I just went to the Ford on Ford website and the postcard using the 'r' word is gone.

Gone.

This means ... we've won.

I've not heard anything from the Smitherman camp about the postcard being removed. In fact I checked an hour ago it was still there, then just before bed I checked and it's gone.

I've said, 'Change is the only apology that matters.'

So Smitherman and his team, I accept.

I know that what they were trying to do was highlight the kind of statements that a fellow candidate has made in his career. I know that it's difficult to educate about prejudice without demonstrating it. I know all that. However some words are beyond tolerable. Slurs against an entire people belong in that category.

It is important here to acknowledge the support of Rolling Around in My Head readers. I also want to especially thank Vita Community Living Services and Special Olympics Ontario for weighing in with powerful letters of support. It takes courage to stand and be counted. You all did. These agencies did. Rah you. Rah us.

We, as disabled people, as allies of disabled people, need to continue to use our voice productively and creatively. We need to discover the power we have as a community and as a movement. People have often said that those of us with disabilities had to discover voice, I disagree, we have always had voice. It's just that others needed to discover their ears.

George Smitherman and his team discovered theirs.

And for that I am well pleased.

People are safer right now than they were only short minutes ago.

I'm still crying.

God's Gone Out for a ...

We were driving home on a beautiful, sunny, breezy and cool afternoon. Work had gone extremely well and I was feeling good in that 'worked hard' and 'achieved much' kind of way you do sometimes. Too, the windows were down and we had music playing, we were just a couple of dudes driving through the city. We came to a stop at a pedestrian crosswalk, a zebra crossing as the Brits would have it, and a young woman began a slow journey across the street.

She walked carefully, as if she'd fallen before and wasn't intending to repeat the experience, but she also walked with the clear purpose of crossing the street without holding traffic up any longer than necessary. About half way cross she was tiring and we saw her slow. I felt the breeze on my arm and I smiled at her, knowing she couldn't see me, but I wanted to add a smile to the mix. I love people with disabilities who still do what they want to do in the way that they do it. Like every act sometimes is both an act of politics and and act of poetry at the same time.

Now the guy in the very tall vehicle next to us, was fuming and getting more impatient with the moment. He reved his engine a couple of times to let everyone know of his growing anger. He must have been a vitally important person and he must have had a vitally important destination. A couple of times his truck seemed to almost buck as if the engine itself was tired of waiting for some careful and slow walking pedestrian.

I looked at his angry face and thought to myself, "I wonder why God gave up smoting? Perhaps for His health?'

When she reached the other side he squealed tires and shot across the intersection, I screamed because I saw her almost topple backwards into a horrible fall as the sudden sound took her by surprise. But she grabbed hold and stayed upright. Joe was stunned and took a few seconds to regroup and then pressed the petal.

We turned the corner onto Davenport and what to our wondering eyes did appear? A flashing light, a police officer, and the truck parked quietly off to the side of the road.

Sometimes the world rights itself.

Campaign Update: A Three Minute Protest

Note: for those late to the party ... the Smitherman has taken down the offensive post card. See update.

I don't want readers to keep coming back only to read what's going on with the word 'r&tard' coming out of candidate Ford's mouth and ending up in candidate's Smitherman's material. So I will update as I can. I did hear from the Smitherman people who assure me they do not endorse the word they are just educating people about Ford's character. They cannot and do not seem to be able to understand the concern about perpetuating the use of the word ... oh well.

So, I have another idea, go to the Ford on Ford site, click to send one of the post cards, click again on the offensive post card, which is called 'signs' and send it back to Smitherman at info@georgesmitherman.ca with the message: Please remove this from the website. As I see it the website encourages people to send the email, why not send it back to him. Almost done now go back and send one to Rob Ford at rob@robfordformayor.ca and ask him to apologize and .'take the pledge' not to use the word again. This takes less than 3 minutes to do! (You know how I know!) Let's get the message across in a different way as letters have not seemed to work. Just note here in the comment section that you've done it please.

Also, the winner of last year's Best Disability Blogger in Canada, has written a new post on the topic of leadership. Drop by and visit her. Thanks

Wednesday, August 18, 2010

Doubt and Reassurance

Sometimes, even with the affirmation of you out in blog land, I wonder if I'm over sensitive and tinge my opinions with self-righteousness. I don't want to be 'that guy'. I was thinking about my letters to politicians, my blog posts, my calls to others for help. I had just hung up from speaking with Special Olympics Ontario who were eager to participate in the campaign to demand public apology from one politician and a retraction of an electronic postcard with hateful language from another. I had a stunning moment of self doubt.

I remembered I wanted to pick up a book at the bookstore. I headed into the store and was steering carefully by a row of shoppers sitting and reading. One of them was a young man with a very pleasant face who was sitting looking like he was waiting for someone. I noticed something out of the corner of my eye. It took me a second to register. He was wearing a lime-green plastic bracelet, the kind that is used for both fundraising and awareness. A few feet later, it struck me ...

As Vita was gearing up the 'Words Hit' campaign we had some bracelets made up so that we could give them out at events like the Pride parade and eventually make them available on our website. The colour was suspiciously like the one the young man was wearing. It couldn't be ...

So I drove by a couple times, probably looking like a stalker so I pulled up to him and said, 'I notice you are wearing a bracelet,' before I could continue he began to speak. He told me that he'd got the bracelet at the Gay Pride march. I was thrilled that he could say that out loud, in public, without embarrassment or fear of reprisal, we've come a long way. He further told me that his younger sister has Down Syndrome and that he discovered that she was being brutally teased by other kids at school and that he wore it for her.

As we talked it was clear how much he loved his sister. He had been surprised, thinking everyone saw her as he did, that she was a victim of such verbal abuse. She was so concerned about her family that she never told them. He discovered it when he surprised her at school, waiting to pick her up. What he saw astonished him. They've had many discussions and he showed her the bracelet, she is thrilled he's wearing it.

Sometimes I doubt myself but then I remember ...

Words Hit
Like a Fist

Tuesday, August 17, 2010

The Insincere And Their Tricks

Note: the Smitherman campaign has removed the offensive postcard so hate will no longer be a click away. Ford, however, has not publicly apologized for what he said. It's now 10 to 3 in Smitherman's favour.

Trick Number One:

Have you ever had an argument with someone who said something hurtful and they ended up saying, 'I'm sorry if what I said offended you.' Doesn't that just piss you off? It's kind of like a passive way of accusing you of being oversensitive and then drawing attention to the fact that they are big enough to apologize for bruising your fragile feelings. I overheard someone once call me a 'fat pig' in another language, I knew the expression and when I called them on it they said, 'I'm sorry if that hurt you.' Um, and you expected it wouldn't? So you can be outrageously hurtful and then be surprised that something said to hurt actually did hurt. Hmmmmm. So that's an apology? A lovely trick. Apology without apology and no commitment to change. As it has been said, 'Change is the only apology that means anything.'

Here's what Rob Ford said in his letter to Joe (he's not apologized to me): If you were offended by my comments, I apologize.

Um, Rob, I'd rather you commit to change and pledge to refrain from hurting us further.

Trick Number Two:

The next big trick is to diminish the offense by pretending to be a maverick and passionate and accidentally stumbling into the politically incorrect. I love how you can diminish your act by changing verbal abuse, the use of what many people with disabilities consider hate speech and an act of bullying into something 'politically incorrect'. Don't shine my shoes with shit! Calling names is known by 4 years olds to be wrong. Four year olds don't come running into the house screaming, 'Robby was politically incorrect to me.' No, they say, 'Robby HURT MY FEELINGS.' Being a maverick, being outspoken, is not diminished by refusing to use racist, sexist, homophobic or disphobic language.

Here's what Rob Ford said to Joe: I have always been an outspoken Councillor while doing my best to stand up for the people of Toronto, and occasionally I have said things that weren't politically correct.

Um, Rob, people with disabilities are part of 'people' and yes, they live in Toronto.
Your statement in the letter that you have respect and empathy for people with disabilities is completely lost when you diminish our concerns.

Trick Number 3: Talking? Is someone talking?

As to the Smitherman camp. Not a single email. At least Ford had the gumption to answer Joe's and many of yours, to me he said, 'I read your blog, you do good work' or something such. As I didn't hear from Smitherman's office, I called them. I talked to two women one of which said that she understood my point.

Um, Smitherman, get your people to answer emails. Um, Smitherman people, if you understood my point you might be moved to action.

So here's the score ...

Ford, I'm awarding one point for answering his emails. I'm awarding another point for an attempt at apology. I'm awarding a final point for reading the blog.

Smitherman, I'd like to give a point to the nice woman I talked to but since I had to call to get someone to call me back - and even then they hadn't read the emails or the blog that outlined the issue, I can't in all fairness.

So for handling the issue thus far:

Ford: 3 points

Smitherman: 0 points

Vita Community Living Services has sent out an open letter to the candidates and to the media and I have spoken to some organizations who will be weighing in on this and joining our protest. Again, we want apology and promise from Ford, we want the postcard removed and an apology from Smitherman.

Blog readers, it's not to late to join in. Write a letter, write a blog, if you work for a service organization get them to write something ... the addresses are in yesterday's blog.

Monday, August 16, 2010

Outrage Out Loud

Note: I see from my stats that this post is being hit a lot due to Facebookers. Thanks for whomever is promoting my work. Just a note, however, that the postcard on the Smitherman FordonFord site has been removed. They have acted. Ford, however, still has not apologized publicly for his use of the word. Read on to see what the fuss has been about.

Warning: This post will be using a quote that includes the 'r' word. It is done only for the purposes of information and without the intent of promulgating the use of the word.

Toronto is less safe for people with intellectual disabilities now that people with disabilities are being defamed as part of the mayoralty campaign. I was innocently watching the news when a poster filled the screen. The poster had a picture of candidate Rob Ford beside a word bubble which said: You’d have to be retarded if you can’t see frickin’ water in front of you. I was brought up short. My heart started to pound and my teeth clenched. The 'R' word has a profound and negative impact on me emotionally.

I've always hated that word, or rather, the use of that word in hateful ways for the purpose of devaluing others. It's a word that is an attack on who people with intellectual disabilities are as individuals and an attack on the minority constituency to which they belong. It's a word that is outrageously harmful and it is used, no matter what people say, with full knowledge and intent. That the word hurts others has also been clearly stated by people with intellectual disabilities themselves, by their families and by the organizations that provide them support. This is not news.

At Vita Community Living Services, we were issued a challenge by our self advocate group. We were asked what we were going to do to make the community safer, to make the community a place where they could go without fear of hearing the 'r' word tossed about. We responded by creating a campaign wherein we distributed the words hit cards to all our members and all our staff, eventually we distributed them to self advocate groups and organizations around the world. We wanted to actively engage those who used the word. Further we developed a version of the card for Gay Pride where we marched for the first time. Our goal was both to confront those who use the word as well as to begin to build unity with other groups who have experienced negative taunts out of the mouths of bigots.

Then comes the campaign for the mayor's seat and because we live in modern times the discussion and debate has become nasty. The George Smitherman camp has decided to use words out of the mouth of candidate Rob Ford to bring him down. As such they created a website with electronic postcards that contain various quotes from the public record said by Rob Ford on various issues. One of the quotes uses the word 'retarded' in reference to signage. This campaign was everywhere. I saw it in the newspapers, I saw it on television, I easily found it on the web. I actually sent the electronic postcard to Manuela, Vita's Executive Director, both so she could see it as well as to find out how easy it is to simply forward this kind of hateful stuff onwards - it's easy.

I was angered.

At Rob Ford for using the word in this manner.

At George Smitherman for choosing this quote to highlight and as a result making the 'r' word so visible, so public, so accessible.

I was angered.

By the media for not bringing a disability perspective to the story. I can't imagine the media, had another word been used to disparage another minority, not interviewing or speaking to spokespeople wounded or damaged by that word.

I think Ford and Smitherman and even the Toronto media believe that we are a passive minority that might be offended but that will be silent. I think that all of us who have justifiable outrage at Ford's use of the word and Smitherman's promulgation of the word will simply shake our heads and go quietly away.

No more silence.

I immediately wrote both Ford and Smitherman. I demanded that Ford apologize for his use of the word and that he 'take the pledge' not to use the word again in that manner. I demanded that Smitherman take that electronic postcard off the site, apologize for choosing that quote and 'take the pledge'. I, of course, have heard nothing back from either side.

Here's where you come into the picture. I have a large daily readership. Many of you are faithful commenters. I would like you to take just five minutes from your day and contact both Ford and Smitherman and if you have time also a note to City Television which has a popular news programme here in Toronto. I'd also ask that you leave a comment here in the comment section to let me know that you've done this. It's a lot to ask. But we have to start using the muscle of our numbers and the motivation of our anger to make our voices heard. Don't worry if you are from outside of Toronto or outside of Canada, the international movement against the 'r word' needs to been seen, felt and most importantly heard. I have this wonderful image of those of you who live in parts of the world that are reading this just after publishing at midnight here in Toronto immediately writing letters, I imagine the Ford and Smitherman people openning their emails in the morning to discover international outrage. I imagine and I hope.

For those of you who have a personal blog, disability themed or not, who are looking for something to blog about, please join in and maybe we can blogswarm this topic. It's inappropriate for public figures to speak disparagingly of any member of the disability community. If you do blog about this, put the link in the comments so we can all visit and get a sense of the length and breadth of our community.

Here's how you get in touch:

Rob Ford who used the word:

Campaign Address
245 Dixon Road
Toronto, Ontario
M9P 3T4

Phone: 416.628.8576

E-mail: rob@robfordformayor.ca


The George Smitherman Campaign who is distributing the quote containing the word:

70 The Esplanade, Suite 201
Toronto, ON
M5E 1R2

T. 416.342.9674

E. info@georgesmitherman.ca

To a media outlet in Toronto:

news.to@citynews.ca

The world needs to be made safe for all - and we are finally realizing that we are part of 'all'.

Thanks 'y'all' for reading, for writing, for protesting, for expressing outrage.

Outrage OutLoud!

Sunday, August 15, 2010

In Preparation

Today is the last day of my vacation and I'm going to take it off. Instead of a post today I am going to refer you to a blog written by my friend Susan who writes every Friday for the faith blog Whatever He Says. She writes about her gentle confrontation with a member of her family regarding the 'r' word. The only correction I would make to her post is that she states the 'words hit' campaign was intitiated by me. I'd love to take that credit but the campaign was actually started as a result of a request for community safety from a Vita member and then was designed in consultation with Manuela Dalla Nora, Vita's executive director and Vince Papa of Ancaster Pope Communications, along with various self advocates and staff.

I will ask you to read that blog in preparation for my blog tomorrow. I was going to write it today but I'm too angry and need to settle down a bit before writing it. I'll do so much later today after a period of time for reflection. Then, tomorrow, I'm going to ask you, maybe even beg you, for help. Action is sometimes needed. I believe it is needed now. But ... wait ... that's for tomorrow. For now, drop by and visit Susan ...

Saturday, August 14, 2010

Ruby's Little Fingers

The breakfast area was full. Joe and I, in an effort to be flexible - which can be dangerous at our age, changed our usual routine to have a much later repast. Mike and family eat later when on vacation than our usual 6:30AM meal. But, what's the point of spending time together if you aren't spending time together? Yesterday was the last day for the others though Joe and I would be staying on. Most of the people who were here during the week had left and there were all new eyes in the breakfast area.

We managed to grab a table that was right by the toaster and almost in the passageway between two seating areas. Just as we took our seat all the others arrived. Ruby looked just up and was rubbing her eyes as she took her seat. She is too young to notice others notice us and for this I am thankful. She is used to me, my size and my disability. More than that she thinks wheelchairs are way, way cool.

We chatted as we had breakfast. I made Ruby my famous 'peanut butter roll up.' It's a slice of bread slathered over with peanut butter and then topped with 'red' jam, once the jam is on, simply roll up. Jam falls out of both ends so you have to constantly lick jam off the ends and your hands and your arms and wipe it off the floor. Ruby thinks it's fun food.

When done Ruby was getting fidgety and wanted to wander outside where it was warmer. I agreed that it was pretty cold in the air conditioning and Joe and I prepared to go outside with her and allow her parents and Sadie to finish their breakfast without 'nearly four year old' discussions. I pulled away from the table and Ruby noticed that I'd taken the legs off the chair when I pulled into breakfast.

'I'll get the legs,' she said loudly. Loud enough to re-engage the stares of strangers. I quietly smiled as I watched them watch her get first one leg and then the other, stopping to put each leg onto the chair with quick expert movements. She'd learned to do that on this vacation and loved the responsibility and the feeling of helping. Let's be clear, it isn't easy to put these things on. There are two holes which each need to be lined up with the 'thingy' that they go over. Then the leg needs to be swung and locked into place. Finally the footplate is pushed down and into place.

Ruby with ease does each of them in only seconds. The legs are heavy so she needs to hold them with two hands and then place the holes over the aforementioned thingy. Her little tongue sticks out as she concentrates. The eyes watched her move around the chair getting it ready for me. They watched her comfortable with the chair, with me, with the process of making me mobile. They watched someone who has the ability to help for the sheer joy of helping, someone who sees helping as something that enhances her without diminishing my value. To her I am not 'other', I'm just 'another'.

Someone unused to the concept of bigotry.

Friday, August 13, 2010

The Witty Drunk

Forgive me for being judgemental but I think you've got a problem when you are drunk enough to be a little out of control at 1:00 in the afternoon in the Walmart parking lot heading for your car. I have always, for my whole entire life, been the focus of those who imbibe a wee too much. Those people whom alcohol makes witty, full of rejoinders like 'hey, hey, big guy!' - what a knee slapper that! I was pushing myself out of the store while Ruby and Joe were paying for their stuff. I like pushing myself as far as I can and am developing a fair bit of strength in my shoulders and arms. It feels good.

When I got through the door there was a slight slope down to the car. We had parked directly opposite the door so I could go straight down. I give a big push over the lip at the bottom of the curb cut and then sailed on towards the car. It was fairly wide so I sat back and enjoyed the ride. Mr. 'too funny by half' Drunk stopped to watch me. I had noticed him in the store breathing alcohol fumes over people and being generally annoying, but in a wonderfully funny manner of course - he cracked himself up. Now he was standing, with a bit of a weave like a punching bag just before coming to rest, watching me.

'Hey big buddy!' he calls out.

I pretend not to hear him, many people think I can't hear them anyways so why not perpetuate that myth?

'Big buddy! Big Buddy!!!' he's calling.

I turn and smile.

'Can I use your wheelchair when you're in the car? I'd like to ride it down the hill, it looks fun.'

Shit. It's going to be a confrontation.

'No, I don't let other people use my chair.'

Drunks can turn fast, 'Awwwww coooooommmmmmmmeeee onnnnn.' Even Ruby doesn't whine like that. 'Man, I just want to borrow it for a minute.'

'No, sorry, I don't lend my chair.'

His face twisted, 'I want your freaking chair, I said.' (He didn't say 'freaking' but I figure the story isn't reduced by changing his words a bit.)

'And I said no,' by now I was at the car.

'Freaking taxpayers bought you that chair and I'm a freaking taxpayer. Give me the freaking chair,' he's loud now and others are noticing, most are afraid of helping, I guess drunks scare more than me. But now I was mad.

'My grandchild is coming out of that store in a few minutes, if she hears you talking like that to me I will rise out of this chair and I will make sure that you never bother anyone again, do you understand me?'

He stopped, stunned at the force of my anger. I saw his fist clench a couple of times then he said, 'OK, buddy, OK, just wanted to have some fun.'

He shuffled away just seconds before Joe and Ruby exited the store. She waved happily at me and called out 'Hi Davey!!'

When she got to the car I asked her for a hug, she reached up and I picked her up, and whispered into her ear, 'Thanks for giving me courage today.' I don't know what she thought but she squeezed harder.

Thursday, August 12, 2010

Maybe Too Accessible

Our room in Gravenhurst is in a hotel that takes accessibility fairly seriously. We stay in a lot of hotels and this one meets my needs in ways that few others do. It has a room that isn't just accessible, it enables me. I look forward to staying here whenever we do, for business or for vacations. Our room in a one bedroom suite and we stay here often enough that we even know what room number we prefer and request it on booking. It's a great place, with great staff and maximum accessibility. Saying this worries me a little because someone with a disability different from mine may find it lacking, but for me, it's simply wonderful.

Mostly.

We'd had dinner and Ruby wanted to play 'Pop up Pirate' and she really wanted Joe to play. Joe was about to do the dishes (even though there is a dishwasher) but Ruby was being persuasive. She likes Joe playing because he finds the game very stressful and has a huge startle effect when 'that damn pirate' jumps out of the barrel. Ruby finds this very funny. In truth, so do I. So I was encouraging him to join the game and he was giving me that 'please no' look. I pretended not to see it.

Now at home our kitchen is small, my wheelchair can get in to the counter where I help prepare meals, but dishes are just not possible. It's become a job that only Joe does because only Joe can do them. But here the dishes are a task that is accessible to me. I noticed this without noticing the implication. You see Joe and I just fell into the old routine. I helped prepare the meal, Joe does the dishes. But, without thinking, I said, 'You play 'Pirate' and I'll do the dishes.'

You could see the realization hit Joe's eyes too. Ah, ha, dishes is now a chore to be shared, at least for this week, at least in this place. As I rolled over to the sink, I was thinking 'Damn, damn, damn, damn!' I heard Joe behind me saying, 'Thank you Ruby, maybe we'll play 'Pirates' every day this time.' She, delightedly, yelled, 'Yeaaaaaaa!'

I muttered something much different under my breath.

Wednesday, August 11, 2010

IAQCWMCDTYVM Syndrome

Mother was old, but strong old. Daughter was well past middle age and gracefully so. They gave me such hope. Real, down deep, personal hope. You see, I am never comfortable when being stared at. And yet, I've been stared at all my life. First just for being ginormously fat, second for being fat in a wheelchair. It bugs me. It irks me. It pisses me off. And if I told the absolute truth, it hurts me, a little bit, every time. I grit my teeth, I speak up - stop staring it's rude, and of course, internally, I hurt myself a little.

We are on vacation and staying at a lovely hotel in Gravenhurst. Mike and his family have a suite as do Joe and I. We start our morning by meeting in the lobby area where there is a hot, free, breakfast. I hadn't noticed mother and daughter at first as I pulled in to the table. I never look at people when arriving in a room. I wait after I've splashed into the social pool until the ripples of stares and comments die down. So when I looked up, I noticed that I wasn't the only person being stared at ... so I followed the gaze and found a woman dignified and gray, sitting at a table with her elderly mother. She had Down Syndrome, her mother had 'I Am Quite Comfortable With My Child's Difference Thank You Very Much Syndrome' otherwise known as IAQCWMCDTYVM Syndrome.

They had breakfast and chatted quietly with each other. I wondered, as I always do in these moments, if mother had any inkling of the quiet loving bond that would have them sharing time and space years later, when the child was born. But what struck me was the incredible quiet dignity that they carried themselves with. They knew of the stares and managed, like I have never done, to rise completely above both the intent and the inspiration for the stares. Their dignity was like a force field that had starers glance away embarrassed at their own actions. Like suddenly finding you have snot on your shirt when greeting the Queen.

I knew that years of hurt feelings brought them to this place of grace. I knew that stares once penetrated and hurt both, for different reasons. But here they were noticed and then in studied determination, not noticed. I want what they had. Grace and dignity, poise and composure - a force field of personal strength and integrity. I want that. Please can I have it? I'd like it wrapped as a gift but I think it can't be bought, it has to be earned through endurance.

Though I did not, myself stare, we did notice each other, mother and daughter and I. We nodded. Me from my island of difference. They from theirs. On their way out they stopped and said to Mike and Marissa: you have a lovely family. Their words of praise brought grins to all at the table. Mike said to mother, 'You do too.' She smiled and nodded, tears forming in her eyes. She took the compliment, tucked it in her purse and took it back to her room.

I'm guessing they're saving it until, in a weak moment should they still have them, they need it.

Tuesday, August 10, 2010

First Day of Vacation: Ruby's Realization

I knew she'd like it the moment I saw it. Joe and I had gone shopping for some fun games to bring on our vacation. I wanted games for laughing and games for learning. The laughing game we picked out right away. It's this pirate in a barrel, you stick in swords until you prick the pirates bum and he flies out of the barrel. It's hysterical and really, though it says it's for four year olds, wildly funny. Ruby took to it right away. Every time the pirate shot into the air she screamed with delight. We were playing the game.

Earlier we had checked with Mike and Marissa about their plans on the day we all leave. Two friends were planning on coming up and joining us for breakfast and we wanted to be sure they'd still be here, not leaving early. They assured us that they weren't in a rush to get back. Ruby listened to this conversation with fascination. She asked Joe, with no humour in her voice, 'You have friends?'

We both found the question very, very funny. Joe assured Ruby that we did indeed have friends. Then she wanted to know all about Belinda and Susan and we answered her questions. She was hoping that they were coming the next day because she was deeply curious about who these people were who were our friends. It was almost that she thought that our social world wasn't much bigger than her and her family.

As we were playing the game she asked me if my friends were in wheelchairs too. I told her that, no, neither Belinda or Susan used a wheelchair. 'Are you going to play this game with your friends?' she asked, sticking a sword into the barrel. 'I'm playing with a friend right now,' I said. Her eyes widened, 'Who?' she asked.

'Why, I'm playing with you and you are my friend,' I explained.

She looked at me gravely as she considered this new definition of our relationship, 'We're friends?' she asked unsure of this. I don't think she'd ever paused to think of who Joe and I are in her life. We are not related to her in the traditional sense even though she treats us and we treat her like grandparent and grandchild.

Finally she said, 'That's good. We're friends.'

Then, after the pirate had leapt from the barrel she asked, 'Are your friends little girls too?'

That struck me funny on so many levels but I simply said ... no, no, I don't think I'll tell you what I said.

Monday, August 09, 2010

Bone Deep

We only had a few items so we were in the 'less than' aisle of the grocery store. There was only one person ahead of us. I paid no attention to her as I dumped out items on the conveyor belt. Only when the bag was empty did I notice that she was busy with the clerk trying to send money through Western Union. The clerk hadn't done it very often and was taking a very long time. The woman wasn't from Canada and the clerk was suspicious of her Identification Card.

Finally Joe, who was standing behind me, leaned over and whispered, pass them over to me in the next aisle. I then saw that that lane was free so I picked the groceries up one at a time and handed them over to him and he then placed them on that belt. The woman looked at me and almost cried with frustration. I knew she felt bad about taking so long.

Now, in truth, I had been bickering in my head about this. I always get in the line with someone who NEEDS something and takes FOREVER. Why does this ALWAYS HAPPEN TO ME?? In truth, I was saying nasty things about the wait. Then she looked at me with apology in her eyes. In a second I managed to think, 'It's Saturday, you aren't in a rush, you are comfortably seated in your wheelchair, what difference does this time make?'

So I said, 'Don't worry, everyone has a right to get their business done.' She smiled a genuine smile. She then stepped back so I could drive by. I waited for Joe and then we wandered through the food court for a bit before deciding to have lunch at home. As I was leaving she rushed up to me and spoke.

"Thank you for your kindness. You don't know what it meant to me to be treated so nicely right then. You must be a truly wonderful man.' Then she, impulsively hugged me. I'm not a hugger. But I let her hold on to me for a second. I could almost feel the sea of despair around her. I felt strong, like a rock, and when she needed me no more she let go. Brushed tears from her eyes and ran off.

All the way home I kept thinking about how she thought I was someone I wasn't. I had thought of her with annoyance even though I spoke to her with kindness. I wished I was who she thought I was. I want to learn to be authentically kind all the way through - beauty may be skin deep but kindness goes to the bone.

I hope she's well.

Sunday, August 08, 2010

Requiem For A Giant: Winifred Kempton

Customs was suspicious of her. I was working, many, many years ago for what is now called Community Living Toronto as an instructor in a day programme. It had been decided to offer sex education to the men of the programme. Yes, you read that right, to the MEN of the programme. A search for curricula turned up only one. Life Horizons by Winifred Kempton, it had therefore been ordered. However, Customs held on to it for a suspiciously long time. The curriculum was based on photographs turned into slides. The pictures were graphic, erections were erect, a big black arrow pointed to the clitoris. The pictures were not, however, in any way salacious. They were, though, for the time - a bit shocking.

Finally the kit arrived and I set about figuring out how to use a slide projector and practiced the script that went with the photos. I tried really hard to be mature but I was in my twenties and wildly excited about the opportunity to teach something of meaning. Amongst my other classes was the incredibly exciting 'numbers' class, replete with spongy puzzles and wooden cut outs. This, to me, was something meaningful.

I struggled through the class and the fellows bore with me. They managed to learn a bit about their bits. I managed to learn a lot about teaching. Together, we both benefited. I remember looking at the name Winifred Kempton and wondering who this woman was. This woman who created a curriculum that was clear and unashamed. This woman who had set the standard for sex education for people with disabilities at the very highest level. I never imagined that one day I would meet her.

After lecturing and writing on sexuality for some years, I was invited to a conference where many of the North American leaders in sex, sexuality and sex education for people with disabilities would be presenting. I was awestruck to be amongst their number. Winifred had continued, from that first curriculum, to write, to publish and to lead. Her path was, by then, already long. Her accomplishments, by then, enormous. We all met for dinner and Winifred was properly seated at the head of the table. I was seated at her right hand. She turned to me and spoke.

I heard her voice but not her words. All I could think was "Winifred Kempton is talking to me, this is Winifred Kempton talking and she's talking to me.' She paused and I knew that I was to say something. Finally I found my voice and said, 'I thought you were kind of like Betty Crocker, I didn't think you really existed.' She laughed and I followed up with, 'Can I touch you?' I reached out my forefinger and poked at her elbow. Luckily she was charmed not disturbed by my little outburst. I then told her about that class and about Canadian customs and about how much I admired her. It was a lovely, lovely, evening.

Over the years we met several times. We even shared the podium once and gave a talk together. She enjoyed my style and I enjoyed her substance. For a little woman, her words carried a great deal of weight. She told of her fight for the right of sexuality and sex education for a population denied the right to knowledge of their bodies, the power of their hearts and the depth of their souls. She understood exactly what sexuality was and exactly it's role in human development. Her wisdom shone even though her voice was beginning to fail her.

Once we were talking and she shared with me that her husband was beginning to have real trouble with his memory. She loved this man and her voice was full of what he meant to her. She said, 'He has trouble with his memory, mine works fine. I have trouble with my hands, his work fine. Together we make it, because together we are completely whole.' No wonder she understood love and the power of relationships. No wonder indeed.

We talked occasionally over the years but, as things happen, we hadn't spoken for a couple of years. She was busy with her life and I with mine. Life has a way of continuing as if there will always be time for one more conversation, one more meeting, one more moment together. But it's a pretence. Life does come to an end.

Winifred died on August 4th. I do not know why the sky did not fall. It should have. I do not know why church bells did not ring out across the land. They should have. I do not know why I had to find out in an email. I should have heard the news passed to me by a hundred thousand grieving lips. A woman who changed the world has died. A woman who had the courage to stand up to bias and bigotry has passed on. This world is forever different because Winifred walked upon it.

I am not overstating this woman's importance to the field of intellectual disability. She is the giant upon who's shoulders we stand. People with disabilities owe her a debt of gratitude that can never be repaid.

That first day of classes with those men in that darkened room, I began work that Winifred had made possible. Those men grew comfortable in their bodies because of a little woman with courage, a little woman with a lion's heart.

That first meeting where I poked her arm, I began a relationship that would lead to wonderful and sparkling conversations sprinkled over many years. That conversation has now ended.

Winifred.

Kempton.

I cannot believe that I had the privilege to meet her. The privilege to say ...

Winifred Kempton was a friend of mine.

Saturday, August 07, 2010

On Waking

Today I woke with hope in my heart.

I woke believing in myself, my life and my mission. I woke believing that the tasks I had to do, I'd be equal to doing. I woke believing that goodness was at the core of humanity. It's a nice way to wake. Breakfast tasted tastier. The bus ride seemed somehow bus-ier. And because I had hope in my heart I noticed things.

The person, who for no good reason, was inexplicably kind to me. Kindness without pity. Kindness without expectation. Simply kind. I really noticed that act of generosity.

The smell of chocolate chip cookies, almost every morning I ride by an enormous bakery, and every morning the smell of cake perfumes the air. This morning, though, they were making chocolate chip cookies. I really noticed the difference in the air. It was crunchy with scent.

The dog who lost control and while his owner looked on horrified he leapt up on to me wanting to plant a big kiss on my cheek. I laughed like a baby as I gave him a hug and scratched his ears. We both ignored her. He, her entreaties to get down. Me, her apologies for a dog gone temporarily mad. What I really noticed was the feel of sun on his fur.

"Walk light is on for all crossings.' That mechanical voice that invites pedestrians to cross the street in any direction. We always time our trips wrongly so that we miss the opportunity to legally jaywalk from one corner to another. But today, we arrived and were welcomed to make 'all crossings'. So, though we were intending to go simply south to north, we crossed from southwest to northeast. And I noticed how much fun it was to change plans for no other reason than 'because'.

Her sunhat, fashionable still, flew in the breeze. She spun her electric wheelchair around, careening around the plants and the benches along the mall's laneway. She laughed as she went by, 'Don't you just love these floors?' she said. And I noticed how good it was to be noticed simply for sharing difference.

I woke with hope in my heart in the morning and my whole day was one of noticing. Noticing that there were little pleasures waiting to be savoured. Hope is like a corrective lens that lets you see the world differently, both in and with sharp relief.

Friday, August 06, 2010

The Neighbour

Today is the last day of work before vacation. I'm typing this about an hour before the bus comes to pick me up. I have a few things to do today that, if not done, will creep into my mind throughout the vacation and steal peace from me. I admit it I'm a worry-wart. More than that I take small concerns and turn them into giant catastrophes. I've learned then, to try to sweep up concerns with a very industrious broom and dump them into the 'finished with' bin.

Knowing myself isn't always a pleasant thing, sometimes it's like having an annoying neighbour whose habits are grating but, well, what do you do, they live next door and you can't avoid them. So, instead I develop coping mechanisms and end up talking to myself about myself in the third person, 'Get this done or he'll bug you about it for the whole holiday.' 'Make that phone call or he'll make you feel guilty about it for days and days.' This is probably a weird way to go about life but, it works. I get things done and avoid that carping inner voice who believes that nagging and guilt are a form of helping.

On Sunday we meet up with Mike, Marissa, Ruby and Sadie for the rest of the week. We were talking on the phone last night and Ruby came on to talk. I asked her if she was looking forward to the vacation. She said, 'Yep'. What was she looking forward to, 'When the water falls' she said referring to a huge bucket that dumps water at the water park. Do you have anything you need to do before you go, I asked thinking of all the packing and getting ready, 'No.' She was completely unconcerned and already ready though not a single item of clothing or a single toy packed.

Unconcerned.

My goal is to do everything I can that will shut the neighbour up and spend time looking at the world like a 4 year old girl who hasn't a care in the world. That and nap a lot.

Thursday, August 05, 2010

POC

He struggled a bit. All of us got together to review what happened at Gay Pride. I suppose the meeting could have been called a 'debriefing' but it really was a 'celebration'. Vita Community Living Services marched in the parade for the first time this year and many of our members came to participate. We went to Pride with a message about diversity and respectful language. We handed out a card which asked the reader to think about language and think about how hurtful words could be.

We were unprepared for the reception we'd get. Thousands of cards were handed out, people read them, people asked for more, people cheered us and our intent. We all told stories about the day, about significant things that happened. About people who were touched and people who were changed. For the first few moments all of those who spoke were care providers of some sort. Most had come on their day off just to celebrate, all had a story to tell.

I did not know the member sitting beside me very well but I could feel him struggle. He was working up his courage to speak, marshaling his language into form and order. I am always impressed when those with a vocabulary limited both by disability and by educational apathy use monumental will to pull sparse language over large concepts, like pulling a threadbare blanket over very cold toes.

Finally he spoke. He talked about handing the cards out and hearing people tell him that he was doing something good. He had been taken aback by the positive reception, he has not had a lot of positive reaction in his life. He said, 'It felt good down in the bottom of my soul. It felt really good.' He talked about what it meant to him to be making a change, making the world different and better for others.

The room was very quiet as he spoke. We knew that he was working hard to ensure that we all understood that it was important to him that he work towards his own liberation. That he understood how the 'R' word felt more than any of us did. That he handed those cards out with a conviction that we could only guess at. He finished speaking, saying again, that the day had meant a lot to him, that having his message printed on the card so that he could easily pass out a demand for social change.

Then in a quiet room, he said, 'Now, who wants a piece of cake.'

Wednesday, August 04, 2010

Two Dudes and a D...

"Dude."

"Dude, Dude."

"Dude, Dude, Dude."

I found a parking spot beside two guys, both on scooters. We sat for awhile and I finally said, 'Nice ride.' The guy who looked the youngest glanced over and says, 'This baby tops out at 6 ... that's M. P. H.'

I said, '6!'

The other guy said, 'He got his tricked out.'

We laughed.

Then we chatted.

People came in and looked over. Their minds forming all sorts of impressions, most of them probably completely wrong. All we were were three 'dudes' ... well, two dudes and a 'dud'. My years of being a dude ended when I dropped a vowel that time I had that nasty spill last year. 'I've fallen and I can't get up without the help of 6 men and a winch with a dump truck'.

Most of the time we laughed, joking about the machines. They thought that the name 'Henry' for mine sucked. I thought the fact that neither had named their sucked. They said, 'Naming your scooter is gay'. I said, 'Who first?' Then they went into gales of laughter.

Joe came along and I called him over, they both waved.

'That's my bitch,' I said.

It took several seconds for the laughter to die down.

We cripples, such a sad lot.

Tuesday, August 03, 2010

Exciting Announcement!!

Hello Readers,

As a result of the post entitled, Ruby's Smile, wherein I spoke about a 2 year series of articles on teaching children with disabilities skills. (Right now we are working on the 10 skills you kid needs to learn in order to develop friendships.) I recieved an email from Exceptional Family and they have decided to offer blog readers a 5$ discount on a year subscription if you identify yourself to the subscription people. Here is the email I received:

Hi Dave!

Thanks so much for positively promoting Exceptional Family magazine! We are obviously very proud of our publication, and are always happy when we have the chance to meet new people are share the word about our work.

As gesture of thanks, we’d like to offer your readers a discount on a yearly subscription to Exceptional Family (which would bring down the very affordable price from 20$ per year, to just 15$). Please just write to me to identify yourself at juliek@miriamfoundation.ca (this is the correct address, sorry about the one from before!)


Julie Klucinskas

Marketing Manager


How cool is that!?!

Two Rooms / Many Thoughts

Joe and I have a membership at the Royal Ontario Museum and we try to use it fairly often. We go over for an hour or so and look at a room. We figure it will take us a long time to see the whole thing. This weekend we popped over to see the Caribana exhibition, knowing it was only there for a few days more. We rode to the second floor and found the exhibit. I was immediately disappointed because, though the room was full of wonderful painting, I had hoped that there would be some of the wonderful costumes that the celebration is famous for, but, oh well. We started to look at the artwork and immediately forgot any disappointment.

Then we turned a corner and there was a small doorway between this gallery and another, very small room. I stopped, feeling looked at. I glanced through the door and saw a remarkable portrait hanging on the wall. The eyes did not exactly, accuse, but they were not in any way, forgiving. I have seldom been arrested by an image or a picture so I waved to Joe letting him know that I was going to investigate the room and see what was the purpose of the photographs. Entering I saw the title of the exhibit House Calls. The pictures were taken by a doctor who brought his camera along on house calls to those were were shut in or house bound.

The show was very, very small but it managed huge effect. The stories of the individuals allowed us to understand the journeys that showed on their faces. The lined faces were like road maps, some showed paths to joy, others showed highways to despair. But the eyes. They were uncompromising. These were people who knew isolation and loneliness, abandonment and neglect. These were people who created society and then, suddenly, found themselves discarded.

We spent a very long time in the room. Many others came in, many others turned immediately and left. One woman, dragging a boy of maybe 10, said, 'I don't understand why they would subject us to this kind of thing.' In my heart, I responded, 'I do.'

Afterwards we went back into the Caribana show and I loved how several of the artists incorporated words into their paintings. One was of a proud woman with big hair. Words of power and encouragement were woven into her hair making it a halo of affirmation. Another had a child reading history, and words above the child exhorted him to learn of the kings and queens and warriors of the past and then know that he will be who he is meant to be. (I apologize, I didn't bring a pen or a pencil and I am writing from memory these are my words about their words, not quotes.)

It was just to be a day of wandering and it turned into a day of thinking. About a room full of people lost and a room full of people found. Of community on one hand, of isolation on the other. We quietly left the museum thinking.

Thinking.

That's what museums are supposed to do, leave you with more than you came in with. Give you more than you expected. Have you journeying to parts of your mind and your heart and your soul that you needed to go.

And all this on a day off.

Monday, August 02, 2010

Today's Post Follows This One

Wow, it's early and already a couple of you have written for information about the series written for Exceptional Family magazine and wanting more information. Vita Community Living Services, has a 'personal development team' which I supervise as part of my role as the Director of Clinical and Educational Services. This team was created to design and or teach classes on subjects vital for personal safety or effective living. We offer, or are about to offer the following classes, Self Esteem, Anger Management, Abuse Prevention, Relationship Training, Boundaries Awareness, Rights and Responsibilities. Senseability: self advocacy for those with significant disabilities. These classes are offered both to Vita members and to those in the larger community. As a result of teaching, we have learned! Our teachers are like little mini experts in each of these fields.

We are working with Exceptional Family magazine to create a series of 8 articles (for those of you who are sharp eye'd counters, yes there are 7 classes but the Relationship Training class will cover two articles - one on relationship development and one on sexuality education.) The teams and I will work on the articles together. I will be the one constant in the articles, both because I find writing a joy and because then I can ensure a fairly consistent tone throughout.

It will take two years for all the articles to come out but our goal is to have them all written within the next several weeks. We've two down and scheduled two more, it's fun, it's exciting and I think the series will benefit parents, professionals and other care providers. Cause we're giving 'tips' and 'strategies' for teaching these concepts in everyday life - which is where the best teaching occurs.

Subscription information is found at the Exceptional Family website.

Ruby's Smile

It happened months ago and yet it's had a profound effect on me, my writing and my understanding. It was an innocent moment that touched me deeply. Ruby, now nearly four, was with us and in our care. She was trying to do something in the front room and she got frustrated. She said to herself, 'I'm just so stupid.' I was instantly upset and called her over to me. She came, being a fairly obedient child, with lip trembling with frustration. I took her by her shoulders and looked her in the eye. She knew this was serious. I said, 'You will never say anything about Ruby like that again, not here with me.' She said, with not a little bit of defiance, 'Why not?' I said, 'Because I love Ruby and no-one says anything bad about little girls that I love.' She reached up and gave me a big hug and was soon back at play.

Later on, she got frustrated again, this time she looked over at me and then a big grin spread over her face. Nothing was said but a lot was communicated.

This incident stayed in my mind. Germinating. When working with the self-esteem team at Vita on an article that is being written for Exceptional Family a Canadian magazine for parents, family and other care providers as part of a 2 year series on teaching children with disabilities skills to live in the real world, the idea made it's way in. Not just to the article but to our teaching as well. I mean why would you let your child say something about themselves that you'd not let a neighbour say, that you'd get litigious over a teacher saying? Why do they get a free pass for verbal abuse? It's not OK to demean someone I care about, and I care about you, so STOP IT.

From there, it's made it's way into my teaching. The first time I told the story of Ruby's frustration and our little confrontation, I saw eyes well up with tears in the audience. I'm thinking that this idea is way more revolutionary than I first thought. I wonder how many of those listening regularly verbally attack themselves, verbally harass and harangue their very being. I know I do. Regularly. Less regularly now. Less regularly since I had a conversation with a little girl.

I have worked really hard for many years towards the idea of safe places and safe harbours, of sanctuary. But what good is a safe place without when there isn't a safe place within? We live in the real world with real people, we are brought up with real parents with who have both skills and failings, we begin to take judgement from without and become judgemental within. Judge not lest ye also be judged may not be about eternal judgement but internal judgement. We may live a life in hell simply because we are not fit to care for ourselves, simply because we do not have the controls within that we try to exercise without. Perhaps we need to learn to treat ourselves with kindness - that is not to say that we should not have expectations of ourselves and engage in honest self evaluation. But who says that self evaluation need be cruel. Why can't failure lead to learning not lashing?

Ruby knows I love her and she knows that I will not allow her to badmouth herself. She's only 4 and at 40 she may not remember that moment and she may not remember me. But I hope she remembers the lesson and when she gets frustrated, I hope, really hope, she takes a break and then ... smiles.