Category Archives: Musings

Rubbing the tummy of the person with disability

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This won’t be much of a post given how much I could say.

I was out with a good girlfriend musician who after a child-bearing hiatus is thinking of going back to performance. We talked a little of fame after going to Adriano Zumbo’s bakery and talking to the man himself who has been on tv here in recent years. My girlfriend went all starstruck and girly which was lovely to see. One of the topics we talked of was being on public display, something I know a bit about.

One of the things I have noticed again of late is the fact that I seem to be or feel I need to be always ready to be on public display. It’s not fame or even notoriety for anything more notable than I get around in a wheelchair.

The basis for the attention ranges from nosiness such as these comments to me in the last week from grownup meant I met for the first time on the train system.

  • “How does the chair work?”
  • When do you charge it?
  • ” I think you’re rear tyre is falling off.” (it wasn’t and no he wasn’t trying to be helpful)
  • “you need a pouch on the side of the chair like this (gestures with hands)”
  • “Can you sleep in a normal umm bed?”

It goes from the benign to the ridiculous. From nosy (above) to rude and curious or companionable (“I have a friend/sister/third cousin 6 times removed who broke her legs, so I know what its like”, “Do you know a guy named Bill (since you both are like that)?)

 

I feel I have a responsibility to be the most generous positive version of myself I can be. For all sorts of reasons. One of these reasons is the sense that I want to give the public especially children a positive experience of disability, if I am the first part of their education in that area. Sometimes that onus gets a wee bit too heavy, but it’s a hard one to shake.

Children of a particular height/age can be very funny; trying to work out how I’m moving myself, or why my “pram” is so different or why I’m such a big baby. I usually try to smile and say hello if I’m close enough. I do try hard not to laugh too hard when the child is staring so hard they walk into a wall (on more than occasion). I’m a little impressed when a restless or upset child can be suddenly quieted merely by being dumbfounded at the sight of me rolling about doing my business.

The attention is by no means constant; at least the comments and the wish to stroke my hair or pat me aren’t. The readiness must be. Especially when I don’t have a normal looking person with me it seems.

 

By the way, as someone who doesn’t like macaroons the one’s at Adriano’s were sublime. Go there! There’s even a ramp!

 

 

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all about the paradigm

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I saw something I really like the other day. I rolled past another “for sale” billboard with the characteristic sticker stuck at 45 degrees denoting a successful transaction.

This one was different. It advertised the joy of completion like most do but put the joy of the completion where, I believe, it belongs; with the parties to the sale not with the agent or the agency.

It read “purchased”. That’s it.

 

Not a great big red, “look what we’ve done” sold sign or worse yet a sold by <insert agent name and phone number> sign. I’m not waiting for dancing pompom people.

It was subtle, unobtrusive and thereby effective.

 

Thanks Agency by 

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what was lost

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After 5 days visiting in Orange which had it’s own dramas in transport I caught my final train at about 830pm last night.
I had my carpet bag hooked via the shoulder strap around my head and right arm; my handbag over my shoulder and mostly resting on the armrest; a backpack and personal esky on the hook on the bottom of the chair. Lastly I had the leather jacket over the top of the backrest.

It was all balanced okay, remarkably well in fact, but I really must have looked like a sight!

At some point rolling home at about 9:30, 10 mins from home my jacket which although it is leather was cheap and from Target a few years ago really really works for me fell off. I noticed a couple of minutes later, but figured with the transfers I had done it was long gone and was with any luck keeping a homeless person warm.

I’ve never had much luck finding things I have dropped, but I was convinced to go back and look.

And lo and behold on the road, I found it!

 

Yay.

I’ll keep looking for things now.

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Oh what a difference

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a day makes….

 

On the back of my miserableness and effective house self arrest and after a difficult night last night I am today, well en route to feeling back to my semi sparkling self.

 

I saw and felt sunshine.

I saw and spoke to outside human beings.

I drank coffee and ate salad.

I finished Christmas shopping for last year. Yes yes I know, but my girlfriend and her hubby (the iPumpkins mentioned here) believe Christmas is whenever you decree it (at least in terms of the get-together, if not the birth of Christ stuff, although there is little if any proof that the birth was ever the 25th December anyway so ….) On that basis Christmas iPumpkin style is this Saturday night. On that basis I hurriedly raced round the shops doing the last bits and pieces and making shop assistants smile at the thought that I was still doing my Christmas shopping!

 

I saw birds and water.birds on a river

I wrote.

I felt useful.

I didn’t feel ill.

 

All in all a good day.

 

Thanks for the concern all

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A box full of side effects

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There is something very strange that happens when the Powers that be lay you low unexpectedly as has happened recently. You lose any misconception that you had it all under control.

People who know me offline don’t need to panic. It’s nothing physical, yes I’m fine physically save for the side effects of medication A(which we hope are being mitigated  by medication B which is causing unpleasant but recognisable reactions in impairment C). It’s mostly mental, and practical.

Even when you try to accept that this will be a change in your circumstances whether temporary or more permanent and adjust your own expectations and activities to not push the boundaries of this newly contained box you find yourself sitting in the middle of room with every contracting walls. While I accept in principle that “this too shall pass” and that historically, I find ultimately that times of enforced retreat are in many ways more effective and strangely reflective. I am finding it hard. Lonely too

I am sadly finding that even reading escapes me, much less going out and talking to folks, something I need to be doing at a managed pace and can’t as easily because part of my trouble is tummy based.

Sorry. With everything that has gone on in the disability space today there were other things I could have talked about, but not today. Just wanted to let you know what was going on for me at a very granular level.

 

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Just writing

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I’ve always wanted to be a writer. A good writer. Partly because I love words and the way they can move both writer and reader of all types. But partly if I’m honest ( the new me now) because when well done, it seems it can be portable.

I want to write because I want to hope that I’m half good at it. I want to write because I feel safer behind my words. But in the same breath I don’t think I’m that good at it. Or at best good enough to do the dream.

I don’t remember the small things of my life, my real life. I promise myself I will, but I don’t. I also don’t really remember the details of good enough stuff I read.

I’m listening to Geraldine Brookes giving the first of her four Boyer lectures. It is broadly speaking on the environment and having a sense of place. I usually get turned off by environmental activism as much of it seems to be anti people, anti relationship and anti balance and full of guilt mungering and but you must know generalizations

I like the way she put her acknowledgement of country neatly within the context of her lecture; where it made sense and resonated with the rest of the points she was making. I believe her. I join her in that sentiment wholeheartedly as opposed to watching it sit there like a sixth digit.

I now at the end of that lecture want to go and check that the wheelchair charger that keeps me disabled and handicapped from having any sort of real wilderness experience is off and run the handwashing load that is due as early as possible to make use the natural sunlight to dry things in air.

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Vale Common Sense

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This was a Facebook meme style update from a friend. It was too clever to just leave on Facebook particularly give it is something I’ve noticed,

 

Today we mourn the passing of a beloved old friend, Common Sense, who has been with us for many years. No one knows for sure how old he was, since his birth records were long ago lost in bureaucratic red tape. He will be remembered as having cultivated such valuable lessons as: – Knowing when to come in out of the rain; – Why the early bird gets the worm; … – Life isn’t always fair; – And maybe it was my fault.

Common Sense lived by simple, sound financial policies, don’t spend more than you can earn and adults, not children, are in charge. His health began to deteriorate rapidly when well-intentioned but overbearing regulations were set in place. Reports of a 6-year-old boy charged with sexual harassment for kissing a classmate; teens suspended from school for using mouthwash after lunch; and a teacher fired for reprimanding an unruly student, only worsened his condition. Common Sense lost ground when parents attacked teachers for doing the job that they themselves had failed to do in disciplining their unruly children. It declined even further when schools were required to get parental consent to administer sun lotion or an aspirin to a student; but could not inform parents when a student became pregnant and wanted to have an abortion. Common Sense lost the will to live as the churches became businesses; and criminals received better treatment than their victims.

Common Sense took a beating when you couldn’t defend yourself from a burglar in your own home and the burglar could sue you for assault. Common Sense finally gave up the will to live, after a woman failed to realize that a steaming cup of coffee was hot. She spilled a little in her lap, and was promptly awarded a huge settlement. Common Sense was preceded in death, by his parents, Truth and Trust, by his wife Discretion, his daughter Responsibility, and his son, Reason. He is survived by his 4 stepbrothers; I Know My Rights, I Want It Now, Someone Else Is To Blame and I’m A Victim Not many attended his funeral because so few realized he was gone. If you still remember him, pass this on. If not, do nothing..

 

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Moments with Socrates — making choices

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My recent readings having included re-reading Socrates’ Apology (as reported we think by Plato).

A passage has struck me: — apologies for the gendered language

 

“You are mistaken, my friend, if you think that a man who is worth anything ought to spend his time weighing up the prospects of life and death. He has only one thing to consider in performing any action; that is, whether he is acting rightly or wrongly, like a good man or a bad one” 27B-28C

 

 

 

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The view from 40 years on

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I remember studying the Stamford Prison Experiment nearly 15 years ago. It was shocking then. Now 40 years on the reflections are really just as interesting.

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