Canadian Weblog Award Honours Rolling Around In My Head

Rolling Around in My Head has won first place in the Disability Category. The Canadian Weblog Awards are a juried award and I would like to thank them for the honour. I would also like to thank them for dealing with the concerns raised last year about how disability blogs would be included.

I believe that when the jury looked over this blog they took into account the comment section, so I thank you all for your comments and always lively and respectful discussion.

Eggplant Pride!

He's been there before.

But it hadn't been.

And I wondered why.

I think I'll tell you what I saw and then I'll tell you how I chose to understand it. I'd be curious to know how you choose to understand it too ...

We parked ourselves at a table. Ruby and Sadie had appointments at the hairdressers upstairs and we decided we'd have a bite of lunch as we waited for the appointment time. We, being robopaths, chose to sit at the same table as we always sit. For some reason our favourite seems to be everyone else's least favourite because even when the place is full, this table is often empty. As the kids got busy taking off their coats and talking about what they wanted to eat, I pulled in and got myself parked.

One of the kiosks that I often get lunch from sometimes has eggplant parmigiana as a special. I looked to see if it was available. I waved to the guy who works here, he's lovely, he's friendly and though he speaks not a word of English, he manages to take orders and give change without too much fuss or bother. I noticed that there was a walker parked right at the entrance way into the stall - where employees enter to cook and serve. I thought that, perhaps, someone was in there leaning against the wall, out of my sight, and chatting with him.

Hmmm.

He's not chatting with anyone.

I looked around to see who had left their walker there.

Hmmm.

There's no one around in the immediate area who looks like they need a walker.

Ruby went over to see if they had cheese pizza available and I saw him move to get near to speak to her. Though I've seen him many times before, I'd never really noticed how he moves behind the counter. He moves by using his hands and his arms - he places them, locks them in place, and then swings his lower body. The walker belongs to him.

And now it's parked.

Right at the entrance.

Where it's never been parked before.

It was placed in such a way that it would be impossible NOT to see it.

OK - that's what I saw.

Here's how I interpreted it - and I know that this is an interpretation.

He was making a statement of some kind.

He was 'coming out of the closet' with his disability and making it present and real for all to see.

I believe there was a purpose in his action.

I don't know what it was about that day, or why he had made the decision. But I do know that the presence of the walker there does something and says something. And I think that what it does and what it says are important.

I say that the walker was a symbol of disability pride and disability defiance.

What say you all?

Too Late, Too Little, Too Much

Can an apology be too late?

Can an apology ask too much?

The voice on the phone was as small as it was unexpected. We haven't spoken for a very long time. We were young, now we're not. The occasion of the phone call was ostensibly to ask me how I felt about Kathleen Wynne's election as Ontario's new premier. The election of an openly gay person to one of Canada's top offices is definitely causing a buzz. Joe and I were pleased at her election, more because we like her policies than because of her sexuality, and realise that it was something we thought we'd never see.

Like I never thought I'd never see or even speak to the person attached to the voice on the phone.

We had a very stilted conversation. We touched words gently, like fingers feel their way around a bruise. The call wasn't long. In the end the voice says, "I think that her private life is her private life and if she can do the job, no one should care."

Was I supposed to applaud?

Was I supposed to break down in tears?

Was I supposed to feel an overwhelming rush of gratitude?

Apologies are odd things - they are given, usually as a means of getting. Forgiveness. Pardon. Mercy.

There are people that I have never apologised to, though I desperately wish to. I like the man I am now, though I still have areas to grow. I'm not so fond of the fellow I was through my 20's and early 30's. I didn't know how to BE me. I ended up being mean. I found the outsider roll very, very difficult. I realise as I write those words that it begins to sound like an excuse. I do not excuse the hurt I caused others. I do not believe that what happened to me allows me to 'happen' to you. Even so, I'm struggling here to say that I did things I regret and treated people in ways that simply aren't acceptable.

And I know that.

And I haven't dared to apologise.

I think the time is long past that.

For me, I think, that I have no right to ask for what apology expects. I'd like there to be a word to use other than "apology"  that means - "I shouldn't have done what I did and I want you to know that I regret my actions - I however understand and respect that these feeble words will change nothing." But there isn't. So I haven't. Maybe I should. I don't know. But for now, at least, I have no wish to burden them with my apologies.

But after the call I got. I found myself more angered that comforted. So now? After you threw me out of you life? So now after you refused to let me even meet your children? So now after you told me that I was going to burn in hell and that God hated me ... and you don't even BELIEVE? So now ... NOW ... that you are in a place of your own personal growth, I'm supposed to welcome your acceptance?

Do you remember that, after you found out that I was, I think 'deviant' was your word, that you went through my life with a microscope? You commented on the fact that I drank beer - homo's are all alcoholics. You commented on the fact that I smoked - queer's don't care about their health. You commented on the facts that my friends died of AIDS - "fags get what fags deserve" you told me.

And now?

You think that Kathleen Wynne should be allowed to have a job, an important job.

Lovely.

Thank you, I suppose.

Maybe your apology made you feel better ... oh wait! You didn't actually apologise. What you did was to let me know that you thought her private life was her own. A statement of half hearted acceptance.

Maybe I'd feel better if you'd said, "I'm sorry."

Maybe.

Maybe there should be another word instead of apologise.

And maybe there should be another word instead of forgiveness.

Self Serve

(photo description: reproduction of a magazine cover of the Australian publication of Voice, a publication of Down Syndrome NSW, featuring a picture of a young woman with Down Syndrome)

A waiter defends a boy with Down Syndrome in a restaurant in Houston and the world goes wild!!

I have no wish to, in any way, detract from what Michael Garcia did and I fully acknowledge that I fist pumped the air when I heard the story. We need to have "good news" stories every now and then and this fit the bill. Someone recognised and stood up to prejudice as expressed to a little boy with a disability.

But.

There's always a 'but' isn't there?

In discussing the story, all over the media, people are constantly saying that he stood up for someone who couldn't stand up for himself.

And that's true.

Because the boy was a 5 year old.

Not because ...

I say ... NOT ... because he has Down Syndrome.

However, whenever I hear about the kids vulnerability it is clear that they are talking about his disability not his age. This fervour that the media, and sometimes even families and support people, have for presenting people with intellectual disabilities as being 'unable to speak for themselves,' or 'unable to defend themselves,' or 'unable to fight their own battles,' is harmful. The message to predators and to the public is that people with intellectual disabilities generally and people with Down Syndrome specifically are, voiceless, spineless, vulnerable people forever in need of heroes.

This is not true.

We need to fight this stereotype almost more than any other. It gives the 'go ahead' to bullies and brutes to target those who only need to be alone, only need to be without accompaniment in order to be perfect victims. People with Down Syndrome, and indeed all people with intellectual disabilities, can benefit from abuse prevention training. While it is true that the more significant the disability the more likely the abuse, it is also true that even those with really significant disabilities can learn from an abuse prevention class appropriately targeted. All people with disabilities, even those who don't speak, can find their voice and their power.

If we leave young Milo Castillo, the five year old in the restaurant, in constant need of an 'other' a 'hero,' a 'saviour' then he will always be at the mercy of another person's courage and another person's kindness. And people aren't always courageous enough to be kind.

The Australian publication, Voice, is perfectly named. It ensures that we understand that people with Down Syndrome have their own voices, their own stories and are their own best self advocates. This is not a view that is, yet, universally accepted or understood. It needs to be.

Abuse prevention training.

Bullying strategies and awareness.

I've taught these classes to thousands of people with disabilities over the years.

In those classes we teach people with disabilities about a body part that remains controversial to this very day.

The backbone.

In those classes we teach people with disabilities about a tool that they have at their ready disposal.

The voice.

It's clear that Michael has them both.

Let's hope that Milo will too.

Shift

There are moments, I recognise now, that are indications of change. Huge change. These moments are moments which mean that that which will come, will come, and when it comes nothing will be the same.

I am moving towards my fortieth anniversary of working in human services and the first time I felt that change would come was only a few years in when Joe's mom took me to Bevan, now a ghost town, and we walked together around where there used to be a 'home' for people with intellectual disability. It was closed. In that moment I realised that these places, these big permanent places, could one day be gone. That which will come, will come.

Many years later I saw a young girl with Down Syndrome walk into a school that, the day before, had been forbidden to her. The moment that she crossed the threshold I knew, somewhere deep inside me that a shift had occurred, that from henceforth we would all imagine a much different world than had ever been imagined before.

Maybe 20 years ago I was asked to create a workshop for people with disabilities on how to say 'no' ... it wasn't conceptualised then as an 'abuse prevention' workshop. It was boldly marketed, by others, not me, as a workshop on the word 'no'  for people with disabilities. The fact that people with disabilities came, no, no, no, the fact that people with disabilities were allowed to come meant something. We were beginning to think about putting down the tools of control. That thought can only be new once, the next day, it was a thought that was moving from idea to action.

On my 25th anniversary in human service I was teaching that self same workshop and when doing it, a woman with a disability asserted herself, told me that I was teaching it wrongly and that I needed to give more of it over to the people who came. Her voice, raised in protest, was a new voice, one that I knew I'd hear again and again and again.

There are many, many of these moments over time.

I had one a couple days ago.

I was attending a training, the self same training I've spoken about already, being given by people with disabilities. People with disabilities teaching people with disabilities about saying no and assertion and abuse prevention. SHIFT. But wait, that's not what I wanted to write about. The training was being filmed and the camera guy was getting things set up. A young woman named Stephanie, who was seated right in front of where I was seated, called over to a support staff named Donna. When Donna got there Stephanie said, "I'm a little nervous because of the camera. What I want to do is give you a signal if I need encouragement. If I put my hair behind my ears, it means I need you to let me know it's going OK." Donna said that she would do as asked.

SHIFT ... and maybe the biggest SHIFT yet. Direct Support Staff giving Directed Support. Stephanie knew what she wanted and needed and she instructed her staff on how best to help her. SHIFT

I had tears in my eyes.

We've been heading towards this all along haven't we. There is a direct line between the closure of institutions to this moment. A direct line that connects all these moments.

I asked Stephanie and Donna if I could write this story and I asked them if I could use their names. They said 'yes' ... and for those of you who are close readers of this blog you will find a shift, a change, in that fact itself.

Canadian Gothic - just for fun

Canadian Gothic

(picture description: two older golden labs, one wearing a pick toque and one a blue toque. They are sitting in front of a wire mesh fence and lots of snow)

I don't know where this came from and who to attribute it to ... but on a cold day here in Toronto it struck me as really, really funny. It is not my intention to violate any copyright, let me know if there is a problem and I will take the picture down immediately.

What She Said - Disability Politics from a Three Year Old

Yesterday was a big day at our house. Ruby and her mom were off on a 'bonding' adventure and Sadie was staying with us for the same reason. We've had Ruby on her own many times but it's only now that Sadie was expressing an interest in staying with us all by herself. Both Joe and I were a bit nervous as we really wanted it to go well. We did what we could to set up for success. We planned activities that we knew that Sadie would love. We bought fresh strawberries. We picked up two Max and Ruby DVDs as Sadie had told us, a couple visits ago, that they were her "very most favourite" show.

It went surprisingly easy. After doing all that needed or wanted to be done, I curled up on one end of the couch and Sadie curled up on the other. We both were covered in blankets. We watched Max try to get candy apples while Ruby tried to compete in the Rabbit games. Apparently gripping stuff. During the various episodes, Sadie kept a running commentary. It was lovely family time.

At one point Sadie looked over to me and said, "I like you."

She's done this before to both Joe and I. On occasions where she is having a wonderful time, she just stops, turns and makes an announcement of affection. It's really quite touching because you know that she means it.

This time was a bit different because after making the bold statement she returned to the show. After maybe a minute or two she turned and said, "I like your wheelchair too."

I smiled inside and out.

I am one of those who doesn't get these statements ...

I see beyond your disability.

I see you not your wheelchair.

I think we need to see the person not the disability.

I believe that your ability makes your disability irrelevant.

I neither like nor appreciate the sentiment behind anything that is meant to communicate that there is a part of me that needs seeing beyond, any part of me that needs a kind of wilful avoidance.

I am not ashamed of my disability and I don't want you to go to extreme lengths to pretend that my 'personhood' is somehow something that you need to do contortions to see.

I am a disabled person.

or, if you prefer because I don't,

I am a person with a disability.

And that's that.

I don't think it's impossible to see both me and my disability and respect both me and my disability. I don't think it's a requirement that we separate me from my identity as a person with a disability. In fact, I think it's a bit offensive.

If someone said to me ...

I don't think of you as gay.

or

I see beyond your sexuality.

or says of me

Dave is a person who is gay.

I'd tell them off.

So, the fact is that Sadie, who is now three, can say:

I like you. I like your wheelchair. And in saying these things let me know that all of me is just fine.

Why can't everyone else?

Broken?

Wendy's comment yesterday about me having someone to love me when I was a child got me thinking about my relationship with my Grandmother as it was then, not as how I choose to remember it now. It's uncomfortable to write some of what I'm going to write but I want to be honest, here, with myself and with you.

I told the exact truth in my last post and in everything I have written about my feelings for my Grandmother. I loved her then. I love her now. I love her memory unceasingly. Laura Hingsburger was a dear, dear, woman. I see her exceptionality now, though, different than I did then. Now I see her as a woman with a big heart who wouldn't be told by others which of her grandchildren had worth and which did not. She was a tough, strong, woman of independent spirit. I admire her - now.

Then.

Not so much.

You see, while I loved Grandma, I thought there was something wrong with her. I got a type of approval from her that was withheld by other adults. I don't want to suggest that my childhood was a desert of affection because that wouldn't be true. There were various moments and various people across time who let me know that I was cared about. But Grandma's affection included a kind of voluntary and all encompassing 'knowing' that was a rare thing. One day I should write about the strange lady that came to my parents party - it's a story I've never told and forgot about until just now.

So.

I thought that Grandma was weird - good weird, but weird.

I thought that Grandma was strange - good strange, but strange.

I thought that Grandma was somehow broken.

And what I feared, more than anything else, was that Grandma was wrong. That those who saw me as lazy, or as stupid, or as ugly, or as unworthy -  were right. I wondered if they laughed at Grandma behind her back, none would have the courage to do it to her face. I worried that she would be mocked because she didn't mock me.

And, maybe, I didn't respect her love enough.

Maybe, I saw her love, given, as less valuable that the love that had been withheld.

I don't like admitting that - but its true.

Now, of course, I see Grandma as someone not broken - but instead as someone entirely whole. I still see her as weird and strange because, of course, entirely whole people are, aren't they.

I'm good with weird ... and I've got to be ... because I aim to be whole.

Grandma's Choice

 

(photo description: A large clear, wide mouth jar, top off, filled with multicoloured buttons.)

I have written about my Grandmother a couple of times here on the blog and elsewhere. Grandma Hingsburger was, and continues to be, a powerful presence in my life. I think of her mostly after I dream of her. She created safe harbour for me, she saw something in me that no one else saw. For her, love was something you did - and she did love well. Recently, I had cause to remember ...

Grandma's Button Jar

Grandma Hingsburger had a huge button jar. Now, when I say huge, I mean huge to a kid, It was full of the most spectacular buttons. She would let me play with it and those buttons provided me with hours of entertainment.. It didn't seem odd to her that while my brother was out playing baseball (?) with friends, I'd be inside arranging the buttons in interesting patterns and experimenting with colour. She would often sit with me and simply watch what I was doing. I'd lean up against her legs and pull the coffee table closer and spend what seemed like forever simply having fun doing and being.

One of the games that Grandma invented was 'hide the cookie jar.' The rules were simple. You hid the cookie jar. It was a different kind of hide and seek. One day, when it was my turn, Grandma and my brother squeezed their eyes shut I went and hid the jar. I came back to them and told them that they could go in search.

Off they went. My brother gave up after ten or fifteen minutes but my Grandma, for all that she was loving, she was also competitive did not give up easily. She would find that jar. So look she did. I fell asleep to the sounds of her rummaging in places I didn't know you could rummage. When I woke, Grandma was sitting looking at me with respect. I had bested her. I had hidden a large jar in a small house so well she couldn't find it. She asked me to show her where it was.

I had forgotten.

Absolutely forgotten.

Inside I felt terror. Grandma loved that Button Jar ... hell, I loved that Button Jar. I sat there and stammered out that I didn't remember. She just said quietly, "take a moment, it will come to you." I took a moment, it didn't come to me.

I told her.

I didn't remember.

I waited for her anger. I was used to anger. I was used to being a disappointment. I was used to being 'more trouble than I was worth.' Grandma looked at me. Really looked at me. I don't know what she saw. But I remember what I saw. She smiled and then she laughed.

Laughed.

She said that the story of the lost button jar was better than the button jar itself. And it did become a story. She would tell it with great gusto. She would talk about tearing the house apart looking for that damned jar. Over the years, every now and then, she'd do another search for the jar. Even when I was an adult, she'd let me know that she had looked and that the game wouldn't be over until the jar was found.

The game never ended.

Even after Grandma died and her things were moved out of the house. The jar remained hidden. To this day I don't remember what I did with it or where I put it. It remains hidden, the game remains in play.

Grandma knew how to teach.

Now that I am an adult I remember this story differently. I remember those moments when she looked at me as I stammered the truth about having forgotten the secret hiding place. I know now that she was making a decision. That she was wise enough to know that there was a decision to be made - that anger, and love, were choices. And she chose love.

I come back to that realisation often.

In the work that I do with people with disabilities.

In the moments I have with Ruby and Sadie.

I can choose how to be and how to react.

The other day someone with a disability was in my office and spilled something on my desk. They looked at me with fear - I had a choice. I laughed Grandma's laugh.

The other day Sadie accidentally broke a Christmas tree ornament. She looked at me with anxiety. I had a choice. I made Grandma's choice.

Perhaps where Grandma's Button Jar had the greatest impact on my life was in my determination to always choose 'hope' even though my natural inclination is towards depression and despair.Thus, though I war within, hope almost always wins. When I first realised that I was gay, even though it was a time where sexuality was not discussed and closets were nailed shut, I dared hope that I'd be loved one day. When I first sat down in a wheelchair, I dared hope that my life would get bigger, not smaller.

Two men looked from prison bars
One saw mud, the other, stars

From this woman I learned that I had choices. I learned that sometimes the story that comes from accidents and lost button jars are the best stories. I learned that love is something you do and hope is a choice you make.

And to this very day ... I love my Grandmother dearly.

Oh Henry

Fear.

Bone deep fear.

Indescribable fear.

At first I didn't understand what was happening. I could feel the wheels of my power chair stick when I made a turn and I put it down to there being something I couldn't see, from my vantage point, on the floor. Then, when it became more serious I thought it was because of the type of floor that I was on. I felt a rising anxiety but my ability to explain away problems and concerns comforted me.

Then.

I was on my way home, a route that I'd taken many times. Like other's who are wheelchair users, I have become used to the 'feel' of the sidewalk. Something was different. Something was wrong. I couldn't describe it properly but I knew that something felt much different.That's not good.

Finally, I made the turn to back into the elevator here at home and the chair just didn't move. I had to push back on the back of my chair to encourage it to move. It did, but it sputtered.

And then the full force of fear struck.

A tidal wave of fear.

A tsunami of terror.

I have never taken the ability to get around for granted. I am constantly thankful for what my chair offers me. Funny then that I never thought of it as something that was a 'thing' that could 'break down'. People say that they 'can't live without their morning coffee' or that they 'can't live without chocolate.' They can. I think to myself, 'I can't live without my power wheelchair.'

But I know I can.

I just don't want to.

So this morning the repair person will arrive to take a look at my poor chair. I won't be here. I couldn't take it.

I remember when niece Erin used to pull our computer apart to do things with it like add memory and other forms of witchery, I had to go out because my anxiety was so high.

This is ten times worse.

So I await the 'wheelchair whisperer' and hope that I am returned without outrageous cost to dependable mobility.

For those who think I'm 'confined to a chair' ... you don't get it, I'll be confined without one.

1440: International Day of Mourning and Memory

Post in Commemoration of the Second International Day of Mourning and Memory

One thousand four hundred and forty.

Some numbers deserve to be written out longhand.

One thousand four hundred and forty.

In a graveyard, not far from where I type, 2011 people were laid to rest.  Only 571 have names. A full one thousand four hundred and forty lay nameless and forgotten. Even if you knew them once, you'd never find them now.

How could this be?

The is a graveyard that lay on the lee side of institutional walls. That institution is now closed. No footsteps echo down the long corridors, the smells of human captivity are slowly fading, the tools of segregation are growing rusty in the dark corners of back wards. Many people who lived there are now free. Many are now finding their way as full citizens, part of the community that once rejected them. Many will never know a moments surety that citizenship is an irrevocable thing.

Murderers serve less time than people who committed the crime of difference.

Those that lived, and died, at the facility, were buried there. Most in unmarked graves. Most without a single indicator that where they rest is ground made holy - not by designation or by prayer but by their presence.

One of the greatest single fears that we have, as we get older, is that our life doesn't matter. Is that we will not  be remembered. In dark hours we may worry that 'no one will ever know that I was here.' We want, and need, a kind of assurance that our time here was important, even in a small way, and that the lives we lived made a difference some how.

Rapists serve less time than people who are convicted of disability.

Shame buried people alive. Institutions housed the shame of families and sometimes the shameful secret of a society that forced families to make impossible decisions. Lack of services, lack of supports, lack of understanding - these weren't incidental markers of a time, they were the tools that were used to pry children from loving arms. Make no mistake. We built places because we wanted to fill them. We built places because we wanted rid of difference in our midst.

Talk to those who lived in residential schools.

Talk to those who lived in facilities.

They know.

Arsonists serve less time that people who found guilty of difference and disability.

One thousand four hundred and forty people lay unremembered.

Until today.

I remember that there were lives lived in the shadows. People who lived in wait for a world to change. People who lived in hope that one day the doors would open and that home would happen. People who looked out of windows yet lived behind locked doors.

I don't know their names.

But I honour their lives.

They served the sentence.

And people now live free, not because a beneficent society wanted them home. But because finally, those who waited could no longer be denied.

Freedom, here, came at a cost.

Time served.

By one thousand four hundred and forty without names, five hundred and seventy one who had the dignity of identification ... and that's just one place ... one of thousands.

Some are still serving time.

By God, I hope without hope, that not one more person convicted of difference, dies still waiting for freedom.

But hope without action is vanity.

Today.

Commit to freedom.

***

A couple fellow bloggers have written posts in commemoration of The International Day of Mourning and Memory ... please spend some time visiting. The first I received was from Joanne who writes of a life ended far too soon. Next in was a blistering piece from Ricki's mom, I accuse wherein she reports a stunning conversation with a doctor that had a lethal outcome. John R has just posted a blog about the roll direct care professionals can have in celebraing the lives of those that they have supported. Belinda Burston sent, late last night a powerful post that demands attention, Remembering Rainerchen. Please put other links in the comment section and, as I am in meetings all day today and then travelling 4 hours home, I'll put them in the blog proper later on tonight.

Oh, Frigging, Please

(Photo description: A woman with long dark hair sits in her wheelchair, facing the ocean with her back to the viewer. Her arms are spread wide open, as if embracing the ocean in front of her. Above her in the blue sky is written: Never Ignore Somebody With a Disability, You Don't Realize How Much They Can Inspire You!! Beside her right hand are the words: Share If You Agree. Click on photo to enlarge.)

Oh, please - go ahead ignore me.

I have been told that I am 'amazing' or 'inspirational' because I am out shopping alone.

I have been a subject of awe because I took my wallet out and paid for a gift for the kids at the toy store.

I have been honoured because I could, with ease and accuracy, get on an elevator.

Shit, man.

This picture and caption seems to suggest that we're here, as disabled people, for needs and purposes of the nondisabled masses. What would the Academy Awards be without an actor humbly accepting an award for daring to take the role of someone with a disability? What would have become of Jerry Lewis if he hadn't been able to vampire our lives? What would John and Jane Q Citizen do if they couldn't buck up their self image by assuring themselves that they are graced by God ... 'there but for the grace of God go I.' How tedious. How tiresome. How annoying.

And, ultimately, how boring.

Do I want to be inspirational? Magical? A source of awe?

Sure.

Why not?

After all I can pass wind with a three octave range. Eat your heart out Barbara.

After all I can type a hundred and twenty words a minute, two hundred and five if I'm angry.

After all I can tell the phases of the moon by lying on my back and seeing the tidal effects of the moon on my belly.

Now, that shits awesome.

And you know what any one of those is a hell of a lot more cool than turning around a corner in my power chair - 'You sure know what you are doing!!!'

And even more interesting than my ability to wait for the bus all by my lonesome - 'I think you are so brave.'

And more inspiring than pretty much anything that I've ever been accused of being inspirational for.

I don't know who designed this or who circulated it - but I'm willing to bet it wasn't someone with a disability.

You know what would inspire me?

No?

I suppose not, after all, that's never really an issue is it?

Have You Ever Noticed (Part Two)

Have you ever notice that words can reach out and give your soul an embrace?

Well they can.

Let me tell you how.

We live fairly near the University of Toronto so our building, every September, becomes home to 'the new fall line' of students. This year we got a particularly nice batch in. The partying is at a minimum and most of the young'uns seemed to have learned a lot of social graces from their parents. A couple days ago I was backing into the elevator, keenly aware that, besides Joe, there was another person on it. I try not to rush because then I muck up the entry into the lift. Once back in I noticed a young man, from the new September line, on the elevator. I thank him for being patient with the few seconds it took for me to back up, I didn't add that there are many in the building who fume when I get on - those few seconds must cost them millions. He said, "No problem." I said, "What a nice young man you are." He said, "Not really, it can be a hard world out there so it's good to do what you can to make it nicer."

Soul Hug.

How nice.

Joe and I remarked on our way down the hallway that if there was a way we could write his parents and say "WELL DONE!!" We'd love to be able to do so.

Have you ever noticed that a look can be like a conspiratorial secret handshake?

Well it can.

Let me tell you how.

I was getting off the subway and making may way over to the ramp that leads up to the exit door. I noticed a woman with a disability, leaning heavily on her cane, coming down the ramp. I slowed to give her time. I didn't want my presence to pressure her to move more quickly. I wasn't in a rush. There were two, very tall, very thin, very elegant, women standing talking immediately in front of the ramp. For me to get to the ramp I'd have to make a wide arc and slip by them and then make an impossibly sharp turn to go up. The woman glanced over to see the woman coming down the ramp, glanced over to see me heading towards it, and then simply carried on their conversation. Wide spaces were available for them to move to, but moving would mean something to them, I know because not moving meant a lot to me. Anyways, the woman with the cane got down and then had to awkwardly get around the two nearly blocking her exit. She looked at them and then glanced at me and gave a little wink. That wink said it all. I started to chuckle because there was an impish wickedness in her look that I understood exactly. There was a lecture on the arrogance and privilege of the norm right there in that look. It was like we bumped fists, in a complicated pattern known only to the society of the disabled and different. It was cool.

Hugs and Handshakes ... without touch, without words.

Sometimes that's just so incredibly cool.

Have You Ever Noticed (Part One)

Have you ever noticed that words can reach out and pat you on the head?

They can.

Let me tell you.

Joe and I were heading off to see Maria Stuarda have her head offed. The opera was being broadcast into a movie theatre that is a subway ride away so we were heading up Yonge Street. At the intersection a youngish fellow, maybe 30, was sweeping debris away from a store entrance. I had to go right where he was sweeping and I, being Canadian, apologised.

He looked up, startled at being spoken to kindly, no doubt.

So he returned the favour.

Here's what he said and I shit you not: That's OK little man.

The light turned and I was swept with the crowd across the street. I noticed Joe, ahead of me, with his shoulders shaking. When I caught up to him his face as contorted in laughter. He thought that was really, really funny.

For the rest of the day, well not exactly the rest of the day, more accurately, until I told him 'STOP!!' he called me his 'little man.'

(Donna, who works with me at Vita and reads this blog regularly ... take note ... once would be funny. ONCE.)

Have you noticed that looks can reach out and slap you right across the kisser?

They can.

Let me tell you.

We were coming back from the opera, again, riding the subway. As we were nearing my stop, I swung the chair into position so I could shoot out the door on arrival. At that time of day the subway platform was packed. There were a group of kids in the upper teens. One of the girls noticed me before the others and her eyes widened like she'd seen something incredibly outrageous. She whispered something to her friends and as they all laughed and then her glance swung back and her look, slapped me hard, and her message that she was superior to me in every way and the right to publicly mock me came with the privilege of her normalcy.

This was one of the few times that others laughed and Joe didn't.

I'll take being 'little man' rather than 'fat, ugly cripple,' though really, I'd rather not have to choose.

Til Tomorrow

Was feeling unwell yesterday.

Took the day home to rest and recuperate.

So taking the day off from blogging too.

See you Sunday.

Show and Tell

 (photo description: Ruby, a six year old girl, wearing a black parka, a white touque, big pink boots and oversized red gloves is leaning up against a big snow-woman (she refuses to call it a snowman) who is wearing a scarf and a black hat. Ruby and the snow-woman are both smiling. Click on picture to enlarge.)

Ruby

... did something that was odd and something that was cool at the same time.

Ruby

... hangs around vegetarians a lot.

Ruby

... her show and tell at school became a really different show and tell.

Ruby

... took the heart from a fish that had been served at dinner and put it in a Tupperware container.

Ruby

... wanted the other kids to see that animals had hearts because she thought they should all know that before they ate them.

Dave and Joe

... who are vegetarians and thought that this little act of 'gorrilla education' was decidedly awesome.

Dave and Joe

... are really thrilled to know that activism can start as early as age 6.

Dave

... wonders if someone needs to somehow arrange a show and tell for the entire world.

Dave

... would sit doctors and teachers and support service agencies management right up front of that show and tell.

Dave

... would like to see the looks on their faces when they learn, first hand that everyone - every single person, every single type of person ... has a heart.

Ruby

... thought that what she did might make a difference.

Dave and Joe

... hopes that it does.

Dave

... wonders if, at his imaginary 'show and tell' for the whole world, people would take notice of if they'd be busy texting to friends about being bored.

Hey, HEY ... we need your opinion

Whoa!!

What the hell is going on??

Joe and I were innocently standing and waiting for the elevator when a woman came into the lobby. She strode up to me and asked if I lived in the apartment above her. We compared numbers and, yes, I did. She then shouted at me.

SHOUTED AT ME.

If anyone thinks that writing in capitals is the same as shouting at someone ... wrong.

JUST WHAT ARE YOU DROPPING ON THE FLOOR ALL THE TIME. ALL DAY. ALL NIGHT. IT SOUNDS LIKE YOU ARE DROPPING MARBLES CONSTANTLY.

I was taken aback.

Joe spoke up, not having been assaulted by her anger he was quicker to speak, "We hear that all the time too, we think it's from upstairs."

Now, in fact, it isn't all the time, it's sometimes, it's random, its background noise to me, I only hear it when it's pointed out. But apparently this woman is losing her marbles because someone seems to be dropping them.

After Joe spoke I sputtered into action, being on the defensive, I agreed with him that I hear it too and that like him I thought it came from upstairs.

Just then the building superintendent came along and the woman who lives downstairs, her actions make it impossible to call her a neighbour, said angrily, "I was just about to whack him," indicating me, "upside the head for constantly dropping things."

The elevator came and she got on with the superintendent continuing her rant about marbles.

I got upstairs.

Calmed down.

Ramped up again.

How freaking dare she?

Firstly, shouldn't people speak to, question, investigate a little before lobbing an accusation. Secondly, is it ever OK to suggest that violence is part of the solution?

Don't tell me that she was just speaking figuratively.

I don't buy that shit.

Since becoming disabled I have come recognise the vulnerability that comes with the territory. I don't like threats, idle or not.

I told Joe that I intended to write her a note telling her I didn't like her presumption, her tone and her implied threat of violence and that my disability didn't give her the right to act with such rudeness.

Yeah, I think disability plays into it.

She knows that Joe and I live together but it was me she approached, probably because we constantly drop things with our weak little grasps us disabled people, not Joe.It was me she shouted at, not Joe. It was me she threatened with violence, not Joe.

So, I want to write her a note, tell her that I've gathered my thoughts up and HERE THEY ARE.

But Joe thinks that this will just escalate things.

We had an, ummm, heated debate about this.

We agreed to abide by your opinions. Simple majority will do it.

Write or Let it Go.

Vote Now!

Kindness as Deviance

Those blood tests that require you to fast from after 8PM? No problem here, I go to bed at 8. After having the test yesterday, Joe and I decided to treat ourselves to breakfast out. There's a hotel that has a nice buffet breakfast - and buffets are good when you've 'fasted' since 8 PM!! So we got our table and then I headed over to where the fellow was making omelets, Joe went off to make toast. There were a group of, primarily women, who were placing their orders. I was asked for mine and I ordered two orders of two eggs over medium. Just after I ordered another woman arrived, rushed, and was greeted by the others waiting.

I asked her if she was with that group, she looked startled that I spoke to her but said that she was. I said that, if she wanted she could go ahead of me so that she'd be able to eat with the others. She was even more startled by the offer. She said that she shouldn't but that she would take me up on the offer. the guy doing the eggs smiled and nodded at me and then took her order.

Then. They all started talking about how incredibly nice I was. They talked to me and about me at the same time. They were all a bit shocked at the offer and we really impressed by my incredible kindness.

Now, I hesitated writing this. I don't want to write about having been NICE. I am not writing this so people will think WHAT A NICE GUY DAVE IS. Or, alternately, DAVE SURE LIKES TO BRAG ABOUT BEING NICE. I'm writing to make a different point.

This encounter kind of saddened me.

I didn't think I was being particularly nice and I sure as hell wasn't being kind. I thought that what I did was unexceptional.

Joe and I talked about this over breakfast and we realised that we've come to a point, in how we are all with each other, that thoughtfulness (for that's all it was - it wasn't nice and it wasn't kind, it was just thoughtful) is exceptional. Thinking about the needs of another before one's own needs is part of how we should just be with each other - isn't it?

It's tremendously sad that we've come to the point that a single act of ordinary human thoughtfulness is a shock and surprise.

Then, when they were leaving, I heard one of the women say, 'I suppose that disabled people are used to waiting and being patient.'

They explained away my 'niceness' and my 'kindness' as something deviant that comes from my essential deviance. It couldn't be something expected of them.

It couldn't be something that they, the truly important, should be expected to do.

When it comes the point to having to reason away 'thoughtfullness' ... I wonder if all is lost.

Two Beautiful Boys, Two Lovely Sisters, Two Amazing Parents

I'm often late to the party with YouTube videos and Facebook events. So I apologise to those of you who have seen the latest, incredible, video about the 'R-word.' I tried very hard to embed it in the post but was not able to. So, I'm going to simply say, click here and head over to take a look. I suggest that you NOT read the article that embeds this video first. Just find it, click on it, enlarge it and then watch it. Read the accompanying text later. I've just seen this, maybe three or four minutes ago, and I'm still having an emotional reaction to what I saw. Please take a a few minutes to view, again, simply click here.

PS

I was reading about embedding links into a post and they say the worst way to do it is to do what I've just done. But, heck, rules are made to be broken!

PPS

Thanks Susan for sending me this - I hadn't seen it and would have been poorer for it.

International Day of Mourning and Memory Approaches

January 23: International Day of Mourning and Memory

This video was created last year for the first International Day of Mourning and Memory and I wanted to share it again as we approach the day itself. I've had some emails from people who are going to be writing things that day and I hope to be able to put links and information here on the blog. If you'd like your post to be listed please ensure that I get that link. You can put it here or on the post the day itself.

There is a Facebook page which was sent to me by John who is a frequent commenter here on my blog and has a brand spanking new blog called Training Wheels which, if you are a direct support professional, you may want to visit. The video and the Facebook page may help you into the spirit of the day and I hope you choose to participate in some way.

I truly believe, especially now, that we need to remember the lives lived by people with disabilities; those caged and those free. Our lives and our stories matter, we have things to say and we have things to contribute and because of that - we have lived and are living memorable lives.

Requiem

I don't know how to mourn his life.

I truly don't.

The news of his death came as a shock. His mother called. We'd not spoken in a couple of years, our contact having been sporadic for decades. In fact, I realise with some surprise, her son and I were in contact a fair bit more frequently, we spoke bare weeks ago. She and I met each other when she called me about me coming to a conference to speak. Once there I found her to be a charming and funny woman. She introduced me to her son. Could he only have been fifteen then? He and I hit it off immediately and spent a fair bit of time chatting. His mother had not told me that he had Down Syndrome. She had spoken of him often on the phone, always with pride,but this she hadn't mentioned. She told me later that she never told anyone about her son's disability, not because she was ashamed of it but because, to her, it was the least interesting thing about him.

We met several times over the next several years at conferences and we always made time for each other. I met her son less often, but for a stretch of time while I did some consultation for the agency in which she worked, I saw both of them on a monthly basis. She was right, Down Syndrome was the least interesting thing about him, he was a truly interesting guy. Down through time, I heard of her fights with the school, with the parks commission (!), with the swimming instructor who didn't want to be in the water with her son (!!) As her son got older, she fought less as she taught him to fight for his own rights. I remember her saying, "I refuse to be one of those parents who say 'I am my child's voice,' he has his own and by God he'll learn to use it." And he did. His growth as a self advocate formed my image of what self advocacy could look like - done right.

And he has died.

His mother called to tell me.

I was shocked.

As was she.

But there was a calm in her voice, a strength.

I grieve the loss.

But I don't know how to mourn him.

 He lived an incredible life.

I remember the celebration when he moved into his own home. His mother wept as she spoke to me. She always knew this day would come. She did not see him as her 'forever child' or 'heaven's very special gift'. She saw him as a infant that would become her boy, as her boy that would become his own man. And those are the transitions he made. Yet when he moved, she felt all the fears that one would expect. Would he be OK? Would he take care of himself? Would he navigate the world well without her beside him? She told me that she realised, with a shock, that these are the fears of all parents regarding all children - her child had simply become her child - Down Syndrome being the least interesting part of him.

He lived an incredible life.

I remember her telling me about his fight at the sheltered industry. The had kept telling him that he wasn't ready for community employment. He kept saying that he was. One day he told the superintendent of his apartment building about his desire for a job and the interference he was getting from the job support people. The superintendent's wife owned a small convenience store and she had just posted a sign in the window to hire someone to work in the store stocking shelves, cleaning messes and keeping an eye on the customers who might want to 'borrow' things. He took the job. Once the scanners came in he was able to work the till. He was very good with money. He was equally good with customers. Sales went up.

He lived an incredible life.

I got to see him at work, a couple years ago, because he pestered the owner to have the store ramped. It was one step and that step was unnecessary. They gave in to his persistent advocacy. Joe and I rolled in and when I saw him working behind the till, with a young teen working stocking the shelves under his supervision, something changed in me. He wasn't proud of his accomplishments, to him it wasn't really anything more than a job and it didn't mean more to him because he had Down Syndrome. Even to himself, who was very proud of who he was, Down Syndrome was the least interesting part of him.

He lived an incredible life.

He never married. But over the years he lived with two different women. The first was someone he met at the agency dance. She was a tyrant. I've never met a more jealous person in my life. He loved her, she controlled him. She was jealous of his relationship with his family, with me, with anyone who came into the store. When she lost control and screamed at his boss for giving him a brief hug in thanks at the end of a hard day, he decided to use those self advocacy skills he'd learned  and the relationship was over. His next woman friend, he never used the term 'girlfriend' as he said he liked 'women', was a woman with Cerebral Palsy who had come into the store. She came in and was startled by something and tumbled over. She jokes that she fell 'head over heals'. The next many years were astonishing to watch. That kind of love is rare to see.

He lived an incredible life.

There's more. So much more. His volunteer work. His involvement in his church; the years they taught Sunday School together. The community of friends that grew about them. His mother's pride. His father's, more distant, love. It was an amazing journey. And now it's ended. Taking everyone by surprise. The loss is keenly felt.

He lived an incredible life.

But he lived this life because he was lucky. He was born into a family who loved him, who nurtured him, who let him grow. He was born into a family which fought when fighting needed to be done, who taught him to fight for himself. He was born to a mother who refused to dim the horizons, who refused to see him as anything less than 'temporarily' hers so she taught him what she would have taught any child who would grow and leave her. He was born to a father who, admits to taking a few years to fall in love with his son, but who also immediately understood that he had a responsibility to this son, like his other son, to teach him how to be a man.

He lived an incredible life.

And it's hard to mourn incredible lives. One of my favourite quotes, learned in a psychology class back when I was in school was by Eric Fromme, "The tragedy in the life of most of us is that we die before we are fully born." He was fully born.

He lived an incredible life.

A life where Down Syndrome was the least interesting part of him. He had his own interesting story. He had tales to tell of full days. He had a red blooded life. His life could have been defined by diagnosis, but it wasn't, it was informed by it but it wasn't defined by it. He made jokes about Down Syndrome, one particularly dirty one that he made to me, that I admit shocked me at first, but that had me reduced to tears. His "don't tell my mother I said that" was the same as any man would have said to any other man with whom he's shared a particularly filthy remark. I've never told her. I never will. And what's cool is, she's good with that.

He lived an incredible life.

Born in a world where he could have ended up ... congregated, segregated. Where he could have ended up living in rooms painted in colours he didn't choose. Where he could have ended up living with people he didn't select. Where he could have ended up living under policies written for him about him without his input. He could have. But he didn't, He dodged the bullet of predetermination.

He lived a life to be celebrated, not mourned.

And that is what I am going to do. I will grieve him, but I will not mourn his life.

Applause From the Crowd

Joe and I, members of the ROM (Royal Ontario Museum) for several years now, decided that we'd expand our horizons and also become members of the AGO (Art Gallery of Ontario). When we were younger we weren't so much interested in museums and galleries - but as we've aged, soon after buying our first gross of blue rinse, we discovered ourselves spending hours and hours at such places. This was hastened by discovering that they all serve a nice tea and pastries.

So we went to the AGO's exhibit of works by Frida and Diego. Wow. We had the same idea as half of Toronto. It was packed. Seeing an exhibit in a wheelchair is an interesting experience. People who stare at me in the mall, can't see me in the gallery. I was stepped in front of constantly. I noticed that those people being pushed by others, managed to do well. Seems that non-disabled people can hear non-disabled people saying 'excuse me' and they move out of the way. Always with a conspicuous glance between them about making way for the poor cripple. Me in a power wheelchair, under my own steam, well that's a bit uppity I guess.

Anyways ... this post isn't about that.

I managed to edify my soul by looking at great art (she was better than he was) and exercise my patience all at the same time. In short: loved the show, glad we went.

When we left the exhibit we came out into the corner where two hallways meet. One full of 'non members,' one full of 'members.' And when I say full, I mean FULL. There was absolutely no space for me to get by. There was a security type person there guarding the door with, well if not their life, their barest attention. I said to Joe, wanting to be overheard, "How do we get out of here?"

The guard, snapped awake and stood up and bellowed to the line up of members. "Move to the side!! Move to the side!! Wheelchair coming through."

I said, to him, equally loudly, I do have a set of lungs, "Person in a wheelchair coming through."

To my utter surprise people in the non member line up began to applaud and some called out, "Yeah," or "You tell him."

Joe, who never likes me to make a fuss (he lives a hellish life sometimes) walked taller, nodding in affirmation at my protest.

It shouldn't have mattered to me. But it did. I really liked that people responded positively. I guess I expected less and I guess I got more. Nice. A really nice change.

Quick Question

Day 100 ...

I've been counting and it's Day 100.

Let's be clear about something. I've been out and about just as much as I've always been and I've gone to the kinds of places I've always gone. I've been to movies, to food courts, to malls, to waiting rooms, to grocery stores. I've been around old people, young people, and middleagers.

And yet, it's Day 100.

Without hearing the R word.

I began noticing that I was hearing less of it somewhere around February. Then after having not heard it for some time, I heard two adult women, well dressed, joking with one another as they walked along. One said to the other, "He's just so R-ded." As they came by me, seconds after having said it, I said,  looking straight at her, "People can hear you you know." She stopped and glared down at me from her pedestal of wealth, privilege and pretty clothes, and said, "Are you speaking to me?"

She was in a huff.

I said, "I am, and I hate experiencing second hand bigotry."

"Wha..."

"You know, without me telling you, that the 'R word' is offensive but you still use it, that's either ignorance, arrogance or bigotry. I vote bigotry."

Tears of rage formed in her eyes and she and her friend, stomped off, her best friend looking back and me and calling me a "fat pig". Ah, the wit that some are blessed with.

I remained calm during all of this, and though they probably think I enjoy that kind of confrontation, I don't like it, I do it, but I dont' like it. My heart goes crazy in my chest and I am always shaken up afterwards. Though people may find it hard to believe, because I do this kind of thing regularly (pop by tomorrow's post for a surprising story) I don't like it.

Anyways.

That was it.

For the next 100 days and counting.

It seems like they tapped out a text message to all their little bigot friends saying "Beware Fat Men in Wheelchairs - they will call you out on your use of the R word." Because, I simply haven't heard it - with the exception of some characters in movies - spoken around me.

I'm wondering.

Are any of you noticing a decrease in it's usage. I know this isn't a scientific kind of analysis but I'd like to know if the trend is in our favour. So please let me know.

A Must Read

Most of you will be familiar with the Edmund Burke quote: The only thing necessary for the triumph of evil is for good men to do nothing. That quote has been both an inspiration and a challenge to me over the years. In fact I've fought some of the battles I've fought simply because of it. I don't want either 'evil to succeed' or to be one of those 'good people who do nothing.' Further, sometimes when I've wondered why people haven't spoken up when people with disabilities have been teased or bullied - my mind always returns to Mr. Burke's quote.

I thought of it again, yesterday, in an entirely different context. A friend of mine sent me an article that she thought I should read. I trust her judgement entirely and, as soon as I could for I had a busy day, clicked on the link. It took me to an article about new ways to interview children with disabilities about abuse. I need to warn you that it's an emotional read - so enter cautiously.  I was stirred, encouraged and astounded by what I read. The conviction to do work that leads to the conviction of abusers is so evident here. The determination for the voices of children with disabilities to be heard is so incredibly welcome.

So, to amend Mr. Burke. The only thing that ensures the defeat of evil is for good people to take action.

Amen and amen.

My Work Day

*Adult Advisory Warning*

**Seriously**

I had an odd day at work today.

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

Menstrual Management

and

Interesting Facts About the Penis

I learned:

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

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

I found:

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

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

I discovered:

An interesting use for the foreskin from circumcised penes.

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

And perhaps the oddest conspiracy theory:

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

All this - while at work.

Sometimes I think I have the funnest job possible.

Ramping Care

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

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

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

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

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

First do no harm.

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

Service, Support and Success: January Issue

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

Tomorrow's blog will appear at midnight EST.

January 23: International Day of Mourning and Memory

January 23rd: International Day of Mourning and Memory

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

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

CONGREGATE
SEGREGATE
PERSECUTE
DESTROY

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

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

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

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

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

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

And we are here to stay.

Look What Shook Loose

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

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

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

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

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

Suddenly the atmosphere changed in the car.

Yikes.

I made a mistake.

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

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

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

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

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

I don't know.

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

Laced Up

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

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

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

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

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

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

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

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

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

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

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

A Fantastic Fairy Tale

Shoes.

I never knew what a big deal they would become.

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

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

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

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

A few weeks ago, I tired of this.

I wanted shoes.

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

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

They arrived, it seemed, within hours.

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

Would they fit?

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

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

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

For the first time in five years.

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

We went out.

It was cold.

My feet were warm.

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

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

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

This CinderFella desperately needed footwear.

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

A New Normal

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

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

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

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

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

That was the first.

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

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

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

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

My world is changing.

Some of those changes unsettle me.

Some of those changes I've longed for.

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

Jokes

It was kind of funny to watch.

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

Here's the joke:

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

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

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

Sharing A Cuppa

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

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

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

"We'll drink a cup of kindness yet"

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

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