Friday, March 27, 2015

No Where

We got home yesterday, from the clinic, where Joe was told that 'all was well' and there was 'absolutely no reason for worry,' exhausted. Sitting and waiting, in a waiting room not designed for a wheelchair, and feeling both conspicuous and worried was tiring for me. Going through the testing was exhausting for Joe. So, we were quiet. Joe had something to eat, then went and had a very long nap. I logged on to work and quietly answered emails and completed tasks.

A few hours later we headed out to do some banking and to pick up a prescription from the pharmacy. I knew that Joe was going to be a while at the bank so I took a huge stack of 'scratch and win' lottery tickets over to be checked at the automatic scanner. This is one of the things I do - because Joe doesn't really enjoy the chore. Me, I find it kind of fun and relaxing. I just scan and put the winners (3$ WOW) in one small pile and the 'oops you lose' in the much, much larger pile.

Because we were at the bank I went to the small convenience store that had a 'checker' inside the mall and around the corner from the bank. I was feeling good. Joe was well. My worry had been unnecessary. Or, possibly, my worried had healed him, which is possible because worry is such a powerful tool for dealing with stress and crisis. But whatever, he was well. I was well. We'd had a nice bit of quiet time at home, me plucking at computer keys in silence while he slept. I was out. And though I was out, I forgot what that meant. And, as I ran the tickets through the scanner, I felt safe. I didn't notice people in the mall. I didn't notice anything. I just did the tickets, separating them into one pile or another.

Then, into my reverie comes a face. A fellow, wearing a shirt and tie, expensive I notice, is looking at me, with hard eyes, "Just remember, this isn't actually like having a job. A job. You know, like, where you go to work and make money."

And he was gone.

He returned to a group who were laughing at his little jibe.

And I was left.

Thinking.

There's no where safe.

There's no where safe.

There's no where safe.

Thursday, March 26, 2015

Freaky Thursday (?)

Today is Dave and Joe's version of Freaky Friday.

For those who don't know what 'Freaky Friday' is, first, I'm sorry, second, it's a movie where mother and daughter magically slip into each other's body. Now, for Joe and I, that would be disastrous - he can't drive the power chair for shit. But what we are doing is switching roles for a day.

In a couple of hours Joe is going for a Gastroscopy and he has been told that he can't leave, after the testing, on his own, even to take a taxi home. So, I'm called in to do the supporting and caring (and worrying but Joe doesn't like me mentioning that one). I've booked WheelTrans to get us there and to get us back. So, the organizing is done, now it's just carrying out the plans and make sure he gets home safely, and gets to sleep off the drugs that he will have been given.

It's odd for me to be in this role. I don't often get to do things to support him in this way. I mean I support him in all sorts of other ways, the ways that come natural when you've been a couple for a long time. But, it's always Joe taking me to the doctor or to the clinic or to the hospital. He just motors on, giving me no reason to worry or to wait in waiting rooms.

So, this morning I got up all prepared to ensure it runs smoothly and WHAM a ton of worry came down and landed on my shoulders. I'm beginning to think that's the hardest part of any of this. I am so used to being the subject of worry that I forget how much of a load that is.

No wonder Joe has broad shoulders.

I'm glad I can lend mine today.

Wednesday, March 25, 2015

Oh, Please

Image result for beer on table
(Photograph description: A tall glass of beer, with a frothy head, sitting on a table.)














Joe and I went out for a beer last weekend. Because of the harshness of the winter, this signified the beginning of spring for us. The trip to the bar isn't far but, even then, it was out of reach in such intense cold. But, Friday had some warmth, we felt like a trip to the pub. So we went.

A lot of you know that I quit drinking alcohol several years ago and have become an inveterate tea-totaler. So we stopped to get a couple big cups of the at Davids Tea and then we headed over to the pub. Not drinking doesn't mean that I don't like the pub atmosphere and as long as everyone is good with me drinking tea - then we're all good.

We chatted with someone, a really nice guy, for a bit and then the topic became my wheelchair and others who use motored mobility devises out in the community. The general agreement was that most were good responsible users but some drove dangerously and didn't care about the safety of others. I too have seen this. I have made comment a few times to scooter drivers who seemed to want to push me off the sidewalk to get out of their way. Equally, I have had other power wheelchair users demand that I get out of the way, when I'm shopping because they want to be where I am. I waited my turn, they need to wait theirs. It happens.

The fellow I was talking to started to lower social expectations for people with disabilities. "Well, at first I'm pissed off or annoyed but then I think about how hard their lives must be and realize that they just need extra patience." Having said this, he smiled at me. He's a really nice guy attempting to be decent. I don't want to go all disability politic all over his ass. So, I just said, "People with disabilities need to rise to the same social standard as everyone else." He began to say that he thought that maybe they couldn't. I told him the reason they couldn't was because people think they can't.

The tyranny of low expectations - right in front of my eyes.

Non disabled people simply don't seem to know how to think about people with disabilities without using some kind of  'disablity as a negative' trope. The narrative that is the easiest to go to is that all of our behaviour is a result of our frustrated lives as disabled people. There is a reluctance to simply think of someone with a disability as behaving like a 'jerk'.

Cause sometimes our primary diagnosis is 'asshole' or 'jerk' or 'what's with you?

And the most successful treatments for the behaviours that result from that particular diagnosis are patently obvious, aren't they?

Tuesday, March 24, 2015

How It Begins

Photo Description: Several people crossing at an intersection, including a young man with a disability.
Joe and I were waiting for the light to change when a young family joined the throng waiting for the green. A little girl, maybe 7 stood a little in front of her mom and day, so she was just off to my left. I looked over at her, she smiled at me, I smiled at her.

Then the light changed.

We surged forward. I was rolling fairly slowly because I was behind people I couldn't get around, and I wasn't in a hurry so didn't try. Beside me was the little girl. She was hopping from one thick white line to the next. It's a game that both Ruby and Sadie play sometimes. She was having fun. She continued to be beside me.

Then her mom, who had been talking animatedly to her dad, noticed.

I heard her being called away from me. These are the exact words used to call her away, "Get away from that man in the wheelchair." The little girl looked back at her mother, she smiled and waved to show that everything was fine. And indeed everything was fine, she was no where near my wheels and in absolutely no danger. She continued on with her game.

We were nearing the other side when her mother came and angrily grabbed her arm and pulled her forward and up on to the curb. "I said, stay way from those kind of people, stay away!' The grab, the pull and the anger in the words startled and frightened the little girl. She looked back at me now, the smile gone. The warmth in her eyes had been turned ice cold.

This is how prejudice and hatred begins.

Monday, March 23, 2015

I said I was sorry!


 Image result for snap!

I just snapped. Literally and figuratively, snapped.


I don't know why, I got up in the morning after a good nights sleep. Joe and I had breakfasted while watching 'Longmire' on Netflix. We decided to get out early to get the shopping done so we can avoid the crowds. Joe, knowing full well the experience of shopping with me, "We can avoid all those people who resent the space you need for your chair." I said, not knowing I was predicting the future, "You can't avoid those people, some of them will have gotten up early too."

Putting the onions in my shopping bag, I headed to the end of the aisle needing to make a sharp right to go down to pick up some tomatoes. At the end of the aisle, there had been some kind of accident, someone had dropped something and part of the floor was covered in, what looked to be Thousand Island dressing. I remember remarking that there were a lot of islands, but 'thousand' was a stretch. I was near the end of the passageway, made narrow by those 'slippery when wet' signs and the cones with the picture of someone falling. A woman with a big cart turned and faced me, she clearly wanted to go through the same passageway that I had just traversed. I could not back up because there was someone right behind me.

I asked, nicely, "Could you just let me pass?" She backed up resentfully, so I threw in a 'sorry'. In response she looked at me with a deep level of anger and impatience. Inside, I heard a little snap. So I turned to her and said, with anger, "I said 'Sorry' what else do you want, you could see that I couldn't back up. What the hell is wrong with using just a little bit of freaking patience." (By the by, I didn't swear, I actually used the word 'freaking') And I rolled on. I was shaking. I don't do that. I don't snap, with anger, at strangers. I just don't. I've had confrontations but not like this, not over something like this.

When I got to the tomatoes I was settling down, Joe came back from getting the pop and water, which need to ride at the bottom of our bundle buggy. I begin to tell him about what happened when the woman came back. She said, "I want you to know that I'm always patient with people like you. And kids. And old people." I said, "You looked very angry and upset when I need to get through where the spill was. Backing up isn't patience, holding your temper is." She left.

Joe and I were near done and she's back again, "I feel sorry for people in wheelchairs and I'm always nice to them, I'm a good person." I said, "Well then, act like one." She stormed away. Joe looked at me questioningly. I said, "All she needed to say was sorry, not all this shit about loving cripples and kids, and I don't need her feeling sorry for me, I need to her be sorry for acting like a jerk."

That was the first one.

Yep, there's more.

Later we went to see the movie 'Chappie' and afterwards we hit the loo. On the way out, I stopped where there was room for me to put my coat on. I was out of everyone's way.  A woman at a table several feet away caught sight of me, turned around and settled in to watch me put my coat on. This happens all the time. Typically, I just move out of sight or have Joe block the view. Another snap. It was so loud I can't believe no one else heard it.  So, I said, loudly, "I'm going to move out of view of those so ignorant that they would stare at someone putting on a coat like they were at a freak show." Again, she looked shocked, then angered, and spun around in her seat. I put my coat on.

I don't do this.

I just don't.

I've never acted this way in public before.

On Sunday, we were out a lot and my old patience for this kind of thing was back. Never confronted or barked at anyone. Not once. I still don't know what happened on Saturday, it just seemed to be a day that I just couldn't take the shit that comes your way when you use a wheelchair or when you are different from others.

Anyone else had a day that they just let go of the reins??

Sunday, March 22, 2015

World Down Syndrome Day: In A Different Key



(Photo Description: Skyline of the city of Toronto, downtown, at night. The CN tower is lit up in yellow and blue, in celebration of World Down Syndrome Day.)






In the wake of World Down Syndrome Day, a day designed to celebrate achievements and to challenge stereotypes, we need to examine the inclusitivity of the day. We need to ask whether those of us who believe in inclusion, who stand firm that 'all means all', have practiced the ancient art of exclusion.

I read a lot of the blogs and articles that came out about people with Down Syndrome. I was inspired, as was the intention of the writers, by the stories I heard and the amazing accomplishments of people with Down Syndrome. The list of those who have done amazing things, and who have lived such full lives, is long. Shona Robertson from Australia, Sarah Gordy from the United Kingdom, Michael Gannon from Ireland, Mia Farah from Lebanon, Shoko Kanazawa from Japan, Raymond Hu from the United States and Stephanie Boghen and Julian Escallon from Canada, comprise a growing number of people with Down Syndrome whose achievements are noteworthy in and of themselves. That last sentence was difficult to write, not because it was hard to find names to include, but because it was hard to select names to include - the accomplishments of many are rich and varied.

Many of the blogs that wrote had inspiring stories of those who have gone beyond the predictions of Doctors, the expectations of teachers, and the prejudices of society. These are important and powerful stories and they are stories that need to be told.

But. We all know that these are not the only stories that need telling. We all know that success isn't always bright and shiny and tinged with celebrity. We know this because most of us live quiet lives filled with more ordinary accomplishments. Most of us are celebrated, not by the press or by the world, but by a smaller more intimate group: those who know and love us.

I met Lyddia many, many years ago, when I'd first become a consultant. She was older than me, by about 15 years, she lived in a group home, she went to a day program and she visited her sister and her elderly father regularly. When the referral was first made for a behaviour therapist, it came from the family, not the agency who supported her. I met her father and sister first.

In chatting I asked about the spelling of Lyddia's name, I had wondered if the secretary had typed it wrongly on the form. Her dad smiled and said that when they were naming their daughter, her mother who had been shaken with the diagnosis of Down Syndrome, decided on the name after learning about the extra chromosome. She decided to give her daughter an extra letter in her name - to say to the world YES WE KNOW!

Their concern was the Lyddia was too passive and they wanted her to have a voice that was heard. She only had a few words, but she could say 'yes' and 'no' ... "that's all you need to be able to say in order to take control of your life," said her sisters. But it only works if people ask the right kind of questions. 'What movie do you want to go to?' doesn't work, they should know that, we keep telling them."

So the referral was for Lyddia to use her voice effectively and for that to happen, the staff had to listen effectively. Then I met Lyddia. She was a short, plump woman, who was, by nature, very quiet. She would look at me, when I asked her something, but as soon as she answered her question, she would look down and away. She understood what the goals were, she agreed to work with me, and we did.

Her staff loved working with her, they saw her as a quiet, gentle and very wise woman. They realized that they too often communicated in a rush, and forgot about framing the questions in such a way that Lyddia could answer. As such, I wasn't involved for long.

I enjoyed working with Lyddia, and, yes, I came to see her wisdom when we were together. She had, when she focused on a task that she enjoyed, the most beautiful and peaceful face I have ever seen.

I remember a conversation with Lyddia's sister. She said that she hated when professionals used terms like 'high grade' and 'low grade' or 'high functioning' or 'low functioning.' She said, 'It's not just because they consider my sister on the 'low end' but it's because those terms miss the point. Lyddia has all the skills necessary to just be Lyddia. She lives her life well. She lives her life kindly. She brings herself to every encounter. She brings her presence into every room. How do you rank those things?"

There is no link to Lyddia's name.

There is no article about Lyddia's life.

Lyddia lived her life receiving supports, going to a day program and later, much later, working part time in a pre-school helping out with the kids. She lived an ordinary life, with ordinary accomplishments. Her achievements are real. But they don't call attention to themselves. But they need not be ignored because of that fact.

Many people with Down Syndrome will live quiet lives filled with everyday accomplishments. Many will need help to live their lives for their whole lives. Many will have goals that reach for the stars that hang low in the sky. But, remember, they are stars still.

Some parents I've spoken to feel excluded from the celebrations of World Down Syndrome Day because they do no see their child represented in the 'You Can Do Anything' attitude or the 'If I can do it, you can do it,' mantra of self advocate speakers. They worry that in the rush to the front of the stage to celebrate those with exceptional accomplishments, the quiet accomplishments, accomplishments that come with struggle, and tears, and love, and patience will be diminished. They worry that their children are the 'embaressment' of the movement. They may not have ever been in the back wards of an institution but exclusion from the conversation puts people in linguistic back wards, hidden behind the conversations and removed from discussion.

Everyone needs a seat at the table.

And everyone needs a chance to communicate.

All means All.

Or as was once powerfully said to me, All means Even You.

Saturday, March 21, 2015

World Down Syndrome Day

 

Right now, somewhere in the world, someone with Down Syndrome is sleeping in.

Right now, somewhere in the world, someone with Down Syndrome is getting up and getting ready for work.

Right now, somewhere in the world, someone with Down Syndrome is kissing his wife goodbye as he heads out the door.

Right now, somewhere in the world, someone with Down Syndrome is working hard at a job he loves.

Bigots tell the lie of 'unfulfilled lives.'
Scientists promote the lie of 'unworthy lives.'
Media purposely create prejudice in words, 'suffering their lives.'

Right now, somewhere near you, someone with Down Syndrome is going to school.

Right now, somewhere near you, someone with Down Syndrome is writing an essay.

Right now, somewhere near you, someone with Down Syndrome is giggling about a boy at school.

Right now, somewhere near you, someone with Down Syndrome is dreaming about her graduation.

Doctors tell the lie of hopelessness.
Geneticists use the word 'cure' instead of the word 'genocide.'
Politicians promote abuse by simply cutting funds.

Right now, in a hospital somewhere, a little child with Down Syndrome is being born.

Right now, in a hospital somewhere, a mother smiles knowing her child has been born on World Down Syndrome Day.

Right now, in a hospital somewhere, a father is crying while he holds his little child.

Right now, in a hospital somewhere, a nurse is quietly thinking that they were irresponsible to have this baby.

Right now, in a hospital somewhere two parents, hearts full of love, commit to their child and to changing the world.

Parents speak the truth of love and of hope.
Teachers speak the truth of learning and of hope.
People with Down Syndrome speak the truth about their love of life.

Right now, someone somewhere is committing to fight prejudice and bigotry towards people with Down Syndrome and other intellectual disabilities.

Right now, someone somewhere is committing to create safe spaces in the world for everyone, including those with Down Syndrome and other disabilities, by no longer staying silent, no longer hanging back.

Right now, someone somewhere is committing to make change happen in their heart, in their soul and in their actions. I am. Are you?