Tuesday, September 02, 2014

Update: SSS - September Issue Released

The September Issue of Service, Support and Success, the newsletter for direct support professionals published by Vita and Hands: The Family Health Network. This month's issue is about supporting people with Fetal Alcohol Syndrome. If you'd like a copy, or a free subscription, please email dhingsburger@vitacls.org and indicate if you'd like the single issue or a subscription.

Monday, September 01, 2014

Labour Day: Alchemy

This morning we were out a bit early, decided to grab a bite of breakfast out before fully starting the day. As we took our seat in the restaurant a woman with an intellectual disability came in accompanied by her support worker. She glanced at me and smiled. I smiled back. We didn't speak. I had worked with her several years ago, gosh more than several years ago, when she was experiencing some really dark times.

Her behaviour, then, was out of control rage for the years of abuse and victimization that she experienced. It was a long hard road that she and I travelled together. Eventually, through the support of a family that loved her, a group of dedicated staff that were committed to making a place of welcome and safety, and the strategies and coping mechanisms that she and I worked on together, she came to a kind of peace. Not with her past. Never with her past. But with her present and with her future.

Seeing her was good.

I saw surprise and warmth on her face when she saw me. These looks were followed almost immediately by worry. She glanced at her staff; a large woman with a stern mouth tempered by kind eyes. I knew that it was important that I not greet her. Our hellos had been said with eyes and with smiles. Nothing more was needed of me. Nothing more was wanted. Her privacy needed protected. Announcing to her staff that I was once her Behaviour Therapist would be a violation of trust. She hadn't needed me, or anyone in that capacity, for many, many years.

They sat at a table not far from us. I heard them chat. I heard them laugh. There was an ease in her laugh; there was genuine delight in the laugh of the woman with the stern mouth and the kind eyes. They were enjoying their morning, they were busy talking about the plans for the day. Labour day.

It was such a typical kind of scened someone who needs support, receiving support.

But it really struck me, on this Labour Day holiday, about the nearly invisible victories that direct support workers have almost every single day. They make community possible. They make connections happen. They take lives that have been damaged and turn them, through the alchemical properties of skill when combined with caring, into lives with a joy for living.

They work today.

Thousands upon thousands upon thousands of direct support professionals. They got up this morning, early, and left their families on this holiday Monday, to go out and make this thing called 'community living' happen. Their work, done well, doesn't look like labour. Their work, done well, is, however, work. It's the kind of labour that changes lives, changes families and changes communities. It's the kind of labour that requires dedication and self-discipline and determination. It's the kind of labour, done well, that is exhausting.

When we left the restaurant I turned to look, to maybe catch her eye to say goodbye, but she was too busy chatting with her staff and eating her breakfast to notice me. But that's OK, we'd said goodbye a long time ago. And since then, she has been supported, every day, by the labour of people who aren't often honoured for their work or for their achievements.

So today.

People with intellectual disabilities have never had a guaranteed right to freedom so, I salute all of you who are out there right now, making freedom possible.

Sunday, August 31, 2014

A Choice

We were heading out for the afternoon and had to stop by the post office on the way. We'd gotten a notification that a parcel was waiting for us and we wanted to make sure that, even in holiday mode, things got done. I knew it would be a small package that could fit in my wheelchair bag so we didn't worry about anything more than picking it up. As we strolled up Bay street I realized that I didn't feel like doing the usual routine.

Typically, I rush ahead and go in the front of the building and take the elevator down and then rush to the back of the building to the post office and meet Joe, who walked down the stairs from the sidewalk, there. Just didn't feel like the rush. Didn't feel like going the long way round only to have to come the long way back. So I told Joe to just go ahead and I'd stop and wait for him. He thought that a fine idea and headed off.

In Ontario we've gone from spring to fall without much of a summer in between. This has caused distress for others but, for me, it's been great. I don't like hot, hot, days. I've been loving the cool sunny days. I found, while waiting, that the cool was multiplied by being in the shade. There are tall buildings which surround that area and not much sunlight to be had. I noticed, a few meters ahead that there was a strip of sunlight that resulted from a silver of opportunity between two buildings. I rolled over to it and it was exactly the width of my wheelchair.

I turned to face the sun and sat there feeling the warmth. It was awesome. I knew that it was like sitting under a spotlight in a darkened room. But I've done that before and people have applauded afterwards, so, I decided that I could do it again. As I sat there, feeling the warmth, I began to think about my life, what I do, the things I have committed myself to.

I have fought against prejudice and bigotry, I have fought against abuse and bullying, I have supported people who have, and continue to have, dark times. I am not alone in this. Most people who read this blog do the same. We choose voice over silence, action over passivity, community over isolation. But that can mean spending a lot of time in the shadows, in the darkness made when hatred and ignorance block the sun.

And here I sat.

In a sliver of sun.

Feeling warm.

Feeling embraced.

Feeling peace.

I sought that space out. I choose to leave the darkness, the shadow behind. When Joe came back I felt completely and utterly happy.

I need to do this more often.

I need to find the sun.

I need to select to step out of the darkness.

And I'm guessing, so do most of you reading this. I hope you all find a sliver of sun, a modicum of warmth and a moment out of the shadows.

Saturday, August 30, 2014

The Parting of The Bar Chairs

After a day of watching DVD's and eating left over Chinese food for lunch, we decided maybe it was time to shower and head out to the pub. This being day one of a five day vacation, it was about 4:00 when we showered and dressed. We wandered down the street, I frustrate Joe a little bit by being an inveterate window shopper. I figured, however, and Joe eventually agreed, that wandering and meandering our way to the pub was, part and parcel, what vacation was about.

I've written before about how the patrons of the pub snap into action to make sure that I have a pathway in, particularly for my first sharp turn into the bar. We took our places and set about chatting and relaxing in the atmosphere. It was weird relaxing from a day of relaxing, but, it was oddly needed. So. We did.

As this is one of the few accessible bars in the area, another fellow, a scooter user, has started coming there too. Often at similar times to when we are there. I think everyone expected us to become immediate and fast friends because we both have disabilities. But this has not happened. We are nodding acquaintances and we speak mostly when he's trying to get by my chair or I'm trying to get by his scooter. Sometimes our misunderstandings of what the other wants to do can be quite comic. He's pleasant. I'm pleasant. That's pretty much as far as the relationship goes.

So when he was heading out, I saw him coming, and began to turn my chair such that I was backing my back wheels out of the way. The folks in the bar all became aware of us readying to pass in a narrow space. He and I have no difficulty with this. We both know how to use our space, we both know both how much space we need and how much space we take up, we do this with a great deal of ease. However people decided they wanted to help. Nice. But helping isn't helping when people are moving things that don't need to be moved, or calling out instructions that don't need to be called out.

I started to laugh when I noticed that the people behind him were moving chairs that he'd already passed by. The bar was in motion! When I had my chair in position, I asked him, "That give you enough room?" He said that it did. Then looked up to see an aisle completely cleared leaving him a huge passageway out of the bar. For the few minutes that this took to happen, the sound of chairs moving had echoed throughout the small bar.

Then.

He was gone.

It was a bit silly and a bit funny. But, I'd rather this that the antagonistic sneer I get when I go to other restaurants and bars and people resent moving their chairs, or sit there an pretend not to hear my request for them to pull their chair in, or move their purse, or grab and empty chair beside them and pull it a bit towards them so I can get by. I'd rather the good naturedness of these particular folks.

To tell a bit of a secret. When this other fellow started coming, I actually got worried. Oh, no, there are two of us in here with big mobility devises. His scooter isn't small. Mine chair isn't either. As it's a small place would they feel 'overtaken' by having us both there. Because really, when we both are there the chair and the scooter, even when parked as out of the way as possible, are highly evident. But, no, no one seems to care. It doesnt' seem to matter. I shouldn't have had to worry, but I did because I thought I had to.

After Joe finished a couple of beer and I finished my tea, with a soda water chaser, we made our way out. The aisle was still mostly clear and I sailed by tables wishing everyone a good night. We made our way over to a friends place, someone dealing with a fairly serious illness, and spent a few hours laughing and joking and reminiscing. We told him about our experience in the bar and suggested that if they could cope with a scooter and a chair, they could cope with his walker. They'd have a hat trick of mobility devices! He said that when he was better, he'd give it a shot. We strolled on home, unhurried because there were more left overs in the fridge. It was going to be a very late supper, but what the hell?

I could get to like this vacationing kind of thing.

Friday, August 29, 2014

A Spark In Darkness

I saw a picture of Facebook this morning. It was the picture of a little girl with Down Syndrome, she was happy, smiling, looking out at the world through trusting eyes.

And I immediately felt a jumble of emotions:

I felt an overwhelming sadness at the prejudice that she will face in her life. It has been said, recently, that her birth was an immoral act. That she has little or nothing to contribute. That her life will be one lived without point, without purpose.

I felt an overwhelming sense of pride at the fact that this little girl, her smile, her grace, her joy at living in that moment when the camera shutter clicked, was a member of my community. My community. Our disabilities are different but our cause is the same. Justice isn't for just us, it's for all of us.

I felt an overwhelming sense of hope knowing that her journey would be one that includes family, includes neighbours and friends, includes schools and hallways, includes inclusion. I felt a hope that her life will be filled with the love that surrounds her now and a hope that that love will sustain her in times of need, because there will be times of need.

I felt an overwhelming sense of responsibility, as a disabled man, to continue the fight for the acceptance of difference, for the end of tolerance and beginning of welcome. It's my job as a member of the disability community to do what needs to be done, to write the letters that need to be written, to speak the words that need to be said, to not fail to confront bullies and bias and bigotry. She looks at the world with trusting eyes. It is my responsibility to attempt to make that trust justified.

I felt an overwhelming sense of gratitude to her mom and her dad who took the picture, who shared their love of her with the world. But much more than that. I felt gratitude that they, not only gave her life, but welcomed her into their life. This has not always been true for children with disabilities. This is less and less often true when Down Syndrome is first identified. An act of love that is, at the same time, an act of political courage. The love in her eyes, as she looks towards the camera her father holds, makes liars out of those who say, who continue to say, that she has nothing to give.

A simple picture on a Facebook page. Is an act of love but it's also an act of defiance. And in my experience defiant love is the fuel behind every great social movement, every great revolution and every victory of social justice. She's the spark, we are the fire.

Thursday, August 28, 2014

5, FIVE, V

A couple days ago I went to get air in the tires of my power wheelchair. The wheels have a silly design in that they can't be pumped at a gas station, they have to be pumped by a mechanic. I'll never understand that. So we made our trip down to Canadian Tire where they will do this for me. I don't like going there, even though they are always nice about it, because I don't like having to ask people for help like that and it's a wee bit difficult to get to. As a result of those things I left it way too long. Strangers were telling me my tires were low.

I could feel the air enter the tires, I rose up first on one side, then on the other. On driving out I noticed that I was having real difficulty. The chair was operating at maximum capacity. It turned on a dime, the slightest touch to the joystick and the chair leapt in that direction. It's two days later and I'm still getting used to the performance of the chair.

I'll admit it's nice to be able to turn so quickly and in such a tight circle. I don't have to manoeuvre so much to get into and out of a space. It's just faster, it responds more quickly, it's quieter and, I'm a little bit taller.

All of this is to say that I'm about to take five days off, in a row, with no plans and nothing on the agenda. Just five days off. I'm having an extended Labour Day weekend. I'm hoping that when I come back from holidays I'll be faster, I'll respond more quickly, I'll be mumbling less about being tired and I'll be a little taller.

I suppose all of us need to take the time to get the air in our tires, either literally or figuratively, well this is my time for that.

So.

I'm ready to take a breather.

I'm ready to get some rest.

I'm ready to put 'nothing' on the agenda - and mean it.

Hope all of you catch some 'nothing' over the long weekend yourselves.

Wednesday, August 27, 2014

Out of the Closet AGAIN!

In the many years that I have written this blog I have never written about pain. I've written about various social aspects of my disability, I've written about the physical barriers that I encounter, but I've not written about pain. In many ways, I'm afraid to. My silence, here, and in my social life in general, about pain is, I think, mainly to protect me. My silence buys me freedom from pitying looks and concerned expressions. It buys me freedom from others doing an immediate reevaluation of the quality of my life. It buys me from an increase, even a slight one would be overwhelming, of the 'better dead' approach to disabilities that the issue of pain brings.

I'm choosing to do this now for two reasons, I want to have an accurate 'diary' of my life as a disabled man - the original purpose of this blog and secondly I've learned that silence isn't really the solution to anything. So, I have been experiencing chronic pain for several years now. It varies in intensity. Sometimes it's the kind of pain that you feel when you aren't doing anything else but disappears when involved in something, working, reading, chatting. Pain that is easily pushed to the side. That's what I have most of the time. However, there is also the kind of pain that interrupts my life, my thoughts, my ability to fully concentrate. This is the kind of pain that's been slowly increasing in frequency over the last few months.

Does it diminish the quality of my life? No, certainly not. Does it diminish the quality of a moment? Yes, sometimes, of course it does. It helps that Joe is aware of this and that I can talk about it when it happens. I know he feels helpless to do something mostly because he doesn't understanding that listening and caring IS doing something. Sometimes it's even enough to make it manageable, first and then it can be shoved aside.

Today I've made the decision that it's time to talk to the doctor about pain management. Up until now it's not been on the table because I've been managing pain, pain has not been managing me. I don't want that to change.

I feel weirdly vulnerable writing this. I know when I became a wheelchair user many people stopped booking me as a speaker, even though I think I have more to say, and I say it more clearly, than I did before the wheelchair. Will the same happen with the issue of pain? Will people assume that I can no longer manage? Will people ignore the daily blog, the daily trips to work, the daily living of my life and assume that I no longer want to or am willing to continue of the path that I've set for myself?

The question really then, is will my honesty about my experience of physical pain result in social pain?

I don't know.

But even though this feels a bit scary, it also feels right. I need to, I want to, live an authentic life. I've only got one, I want to be free to explore it in all it's complexities.

And because I want these things ... I'm going to pursue them.

Oddly, I never felt a moments pain while writing about pain. It's was there, but shoved aside, diminished by the concentration and the contemplation involved in writing these words.

Purpose is for me, a helluva pain killer.