Category Archives: Musings

Labels or Love — link love on labels

Posted on by
Reply

I’ve been having a lot of things float across my radar that have got me thinking about labeling around the issue of disability. Lets start with some links while I try and synthesise my brain a bit.

  • Cerebral palsy change for the Spastic Centre – Health – News – Northern District Times. As a former client of the service in my childhood can I just say. Yay! I’m pretty sure this was being mooted 25 years ago. As a child I hated having to say spastic in relation to myself because even though it was the correct technical term; describing a person who spasms,it was; and is derogatory. I just hope that they don’t spend the next 66 years having to handle the re-branding like others have had to so for so long.
  • This post over at Deeply Problematic, looks at the definitions we give ourselves particularly around disability. Word order defines focus and priorities and, as such the messages we want to give others. Am I a
    • disabled woman;
    • woman with a disability,
    • differently abled woman
    • normal woman who just sits a lot

I remember thinking of myself as the last of these growing up and into my twenties. I found when strangers and children asked it was the the one that defused the tension, reduced fear.

While my impairment was visible (the main one anyone), the effects were not all as apparent as the wheelchair. Therefore I too have the choice as to my label. It’s got me thinking. More on this as it comes to hand (or head in this case). In the meant-time I have said  some of this stuff before.

  • Another post on the lessons on visible/invisible temporary/permanent disability and the fct that we all need to be asked “How are you?” My favourite line, because I can so relate:

For the fifth time that night, I had to explain myself, and I was getting a little tired of my on-going narrative.  I gave her the 60-second version of my story.

I just hope I can remember to ask the question and wait for the answer.

Possibly Related Posts:


WWGD — Heated table meetings

Posted on by
5

For those of you outside Australia, the entire continent is having some very hard times weatherwise at the moment. In Sydney yesterday the heat was oppressive–today is slated to be worse to the point where I can’t sit at my window (where my desk is) for very long.

In that context, this is what I wrote down yesterday at about 4 PM.

I used to be really worried about the space I take up (in my wheelchair). I still am really. I was raised to be quite conscious of it when I parked etc.

But I’m sitting at DejaBrew in the city waiting for a friend. There were no tables I could easily get to inside so I was aiming for a table in the shade outside. I’m having an ordinary coffee–table hire basically. I don’t think it’s the coffee’s fault. I think it’s just the heat.I’m trying to collect spoons and prepare for a all day meeting later in the week, when I need to set up and be intelligent.

There are two suits sitting next to me in the shade, with a table also shaded between us with the jacket and bag of one of the suits and his briefcase occupying.

Grey stripe suit is in charge (or wants to be), or pitching an idea and trying to look committed. He keeps eyeing me suspiciously. Younger blue suit is quieter, drinking water to the grey suit’s latte. He is clearly the one with the purse strings.

They are both engaged in the paper business of a meeting and taking three tables to do it. One for the grey suit and his paperwork, pushed against one for the blue suit and his papers. These tables seat four each comfortably. The coffee shop could seat 12 people in the shade in this space.

The craziest thing is that one table is for the blue suit to store his blazer and I got glared at when I parked there. They want a buffer perhaps. I should have just stayed there, but I felt shy.

Leaving me in the sun. Melting.

Possibly Related Posts:


My granny is calling …. aka WWGD

Posted on by
3

First let me say; my granny (my mother’s mother) has been dead for very nearly 10 years. So no I don’t mean she’s literally calling, or even from the grave or even in a meta-physical sense. I mean that I often wonder what she would make of the world around me. I find myself asking on the cusp of a new year;
What would Granny

  • do, (or perhaps more noteworthy not do),
  • think,
  • say (or again when would she hold her tongue), and even,
  • wear.

Those who know me offline (or, as we used to say online;  in real life) will know then I speak very highly of my grandmother and the lessons she taught me and the wisdom she held so lightly. She was in my view the perfect mix of a modern (for the time of) yet woman who knew of the value of occasion, manners, common sense and practical service of others.

I don’t know whether this has a lot to do with her or not. However, I’ve been noticing a distinct slide in the above, particularly in public. Perhaps I’m getting old, or more old-fashioned but I find myself shaking my head, more often than I used to.

This example probably makes me sound very old and grumpy.

I recently met family for morning tea at a shopping centre on the other side of Sydney where I  indulged in a fruity version of Earl Grey tea called Girlie Grey,  I caught two trains  back home to the Inner West. The journey to see my relatives was uneventful except that half a dozen schoolchildren, now on holiday to February  were somewhat boisterous in the carriage down the stairs from me, with the parents ending up joining in on the mildly rough play. You could see other commuters trying to remain focused on the newspaper or book in front of them. I’m not sure how successful they were. But really that wasn’t too bad.

Less than two hours later I made the return journey. On the train heading into Central, two seemingly unrelated women in their early 20s bordered a couple of stops after me. One had a small suitcase, and one a trolley. Both moved quickly,  but were largely concentrating on the goings-on on their mobile phones. Both  sat quickly in the vestibule area where I am required to park (the other parts of the carriage going up or down via three stairs apiece. Also at this train station  bordered two older women who proceeded down the three stairs to the carriage proper. One of the younger women smiled at me and proceeded to continue eating a banana and consulting her mobile. I smiled back.

A few stops later, but still a stop or two before her destination the frailer of the two older women climbed carefully and nervously up the stairs to enquire whether we were at a particular station. The somewhat fitter older woman, also seemingly unrelated to the other was the first to pipe up that she still had two stops until her declared destination.

It really was a smooth enough ride on the train. It was still bumpy though and the frailer of the two looked increasingly unsteady on her feet and more anxious than anything about staying on her feet.

I found myself, while parked well out of the way wanting to leap up by way of a temporary miracle if nothing else and offer this woman my seat even though that wasn’t possible because I was using my seat (my wheelchair). Between the two older women now both standing I caught the eye of the younger one who had smiled at me earlier and gestured to the older women standing around us. She smiled at me blankly and stayed firmly in her seat.
I posted the following as my status update on Facebook as we rattled through the city;

This will sound odd I guess but I wish I could stand up for people on mass transit. There is a little old lady standing on my train while two 20 somethings sit and smile. I know I can’t assume that they can stand but. Grrr I want a cattle prod some days

I can’t help wondering what would Granny do?  I suspect that even in her 80s, she would have wanted to stand and give her seat to the “old dear”.
I know this isn’t normally a  manners blog, and perhaps it was my schooling as much as my grandparent that raised me to think that that behaviour is odd. But either way that’s my two cents. Here’s two more:

I don’t see any harm in offering your seat to someone who needs it more than you do regardless of age

Though  unlike that author I think that it is not just one age group that must be reminded.

Possibly Related Posts:


Healing #reverb10

Posted on by
2

What healed you this year? Was it sudden, or a drip-by-drip evolution? How would you like to be healed in 2011?

(Author: Leonie Allan)

Whoa — this is a tough one, depending how I was to take it.

Healing and I have a strange love hate relationship. Some of the reasons why may well be obvious. The various churches that I have been into have also increased my scepticism and nervousness about this issue.

That’s if I take a traditional response. But, I’m not going to, am I?

Healing for me this year has been very much a drip dry healing, as it always is for me. Healing of my own anxieties, a settling of my moods, hearing of relationships (and I’m including with myself) and although it might not always be evident a renewed sense of “the piece that passes all understanding”.

I still have the health challenges, but even with regards those I’m still active and involved. And I’m calmer at some level that I would not have expected.

I found a level playing field with relationships. I know my limits better, and I’m better able to respect and noticed other people’s limits without having to run into them like a brick wall first. Not that I had bad relationships mind you, but things can always be improved.

The fun thing that I’ve healed this year is my love of reading and it seems of writing.According to  my book reading log I have read something like 25 books this year which in addition to the work-related reading I do isn’t bad.

Possibly Related Posts:


#reverb10 Lesson Learned: my own company

Posted on by
Reply

I haven’t done this for a while, but I like this question and I want to think about it.

What was the best thing you learned about yourself this past year? And how will you apply that lesson going forward?

(Author: Tara Weaver)

I’ve learnt a lot about myself, or at least I think I have. My problem now is I can’t exactly remember any of them with enough clarity and motivation to report on it here much less live it next year.

I think I’m proudest of learning that I can keep my own company quite well. I always liked being both with others and myself. But I now use that time well. I do good things with it. I’ve built good things with that time. I’m not scared.

Possibly Related Posts:


#reverb10 – Make

Posted on by
1

Growing up I always came late to the good fads. I was among the last to know about friendship bracelets, cabbage patch dolls etc etc.

In that vein, I’ve only just discovered #Reverb10 of blogging opportunity to review the year that was in a series of daily posts. I will try and catch up over the course of the month and do the five that I’ve missed out on. In the meantime however; today’s prompt is;

What was the last thing you made? What materials did you use? Is there something you want to make, but you need to clear some time for it?
(Author: Gretchen Rubin)

This is a difficult one for me as in the classic sense I don’t really make much, not in the tangible messy but fun sense. I mean I make a mess (see my earlier post), I make friends, etc. In the tangible sense, the last thing I made was a risotto. In the more ethereal sense, the last thing I made was a commitment to another person. I’m proud of my ability to buy in large keep commitments and build my energy levels around usage around the commitments that are already there. It had been always worked, but I’d like to think it has been appreciated.

This year all other things being equal I’d like to make myself into a lawyer. I would really like to finish that even if I never really use it. So close and yet maybe so far. I also need to make some decisions about where and how to live because I’m restless here and I have other options.

In a more tangible sense I’d like to learn to make nice salads.

Possibly Related Posts:


Travels

Posted on by
1

I took my laptop to Orange this last weekend thinking that around the celebrations for my nosher’s birthday I’d have plenty of options to write. Sadly I couldn’t connect my laptop to the network or even get my phone onto 3G.

On the coach now driving through mist and light rain to connect to a train to Sydney. This is the first time I’ve got the coach to my mother’s place courtesy of a hoist on the side that is very neatly concealed under the bus and two missing seats.

There is something very romantic about the fading light the rolling green hills and the stillness.

Possibly Related Posts:


Monday at 3:30 AM

Posted on by
1

I had great plans for today. I had a bit of an enforced break last week and although I took my laptop, some new billing software and at least a half baked desire to do work I found myself needing to rest again and playing computer games and watch YouTube videos of programs I had seen before and could more or less recite. It was a good rest and then last night I just could not sleep once wide awake and lay awake, with my wheelchair unable to be unplugged until the morning. For example, I was going to write 1000 words plus of my novel for NaNoWriMo–National Novel Writing Month, which are known about since I was in uni but it never actually been disciplined enough to finish. I’ve only got 200 words written so far and a busy month ahead in  other ways. Oh well, there’s always tomorrow.

So I am clearly exhausted. My eyes are smarting. My back hurts and my concentration and speech are equally sloppy. Yet I still strangely feel inspired. Lazy sloppy inspired.

It was interesting and peaceful though in watching the light change in a somewhat less familiar environment this morning accompanied by the occasional hum from the fridge and the noises of nocturnal animals and neighbours next door. There was a calming rhythm watching the world wake once I’ve decided that flight was not to be mine.

And as I finally rose at 5:15 in the morning, it was only then that the birds tweeted their first greetings. It felt poetic and beautiful.

Possibly Related Posts:


A lesson from Survivor

Posted on by
Reply

I’ve been watching survivor episodes on YouTube while I haven’t been particularly well. I find the show and other reality television fascinating. Originally, I thought that was because I am a self-confessed “connoisseur of human folly”. I’m now not so sure that is the reason. I like watching the dynamics between individuals; but what I think I prefer is watching people work within the rules of the shows. It seems to me that the tension between the contestants is only really tension because of the boundaries that they need to work around set by the rules.

For example, if the rules didn’t state that every three days the tribe that didn’t win immunity had to go to Tribal Council that it would not be the scrambling for votes the afternoon before Tribal Council. Nor would there be any real incentive to win the immunity challenges. The interest in bragging rights would only go so far me thinks.

Somebody vigilant also needs to be monitoring these rules with a big enough stick, or carrot and the authority to enforce the rules. In an episode I was watching yesterday, which was the final elimination before the final tribal council (so the stakes were high), a contestant shifted her foot so that for a milli–second the foot cleared the beam it was both to stand on. This was against the rules and therefore disqualified her from winning immunity.

I fear that our disability discrimination legislation here in Australia (including the access to premises standard, that was lauded for a very long time as our next big hope for inclusion) will end up being little more than a toothless tiger, especially in relation to our obligations under the UN Convention for the rights of Persons with disabilities which we championed for so long.

As hard as this might sound, we need to actually start saying no to businesses that want to exclude. We need to start saying no to businesses that want exemptions. Not in 35 years when we hope everyone is adjusted. But now. Because human nature dictates that we will not adjust until we have to. If we want people to stop driving in the city, we need to stop allowing parking in the city. Cajoling will only work so far. I think we think that we still have time–an endless amount of time. We don’t. On a whole range of issues we don’t. Disability is one of those issues, only one of those issues. Or, we think that the rules don’t apply to us, however boldly we express that. Perhaps we are the exception that proves the rule except when we all want to be exceptions.

Recently, the bus route that I travel on most became prepay–meaning that bus drivers would no longer sell individual bus tickets on the bus. Rather you need to go and buy a a bus ticket before you ride. Whatever your thoughts about the equality of that approach, it nonetheless has been a progressive implementation across the city. Yet, people keep making excuses when they board the bus as to why they haven’t bought a ticket. But worse than that (if you want people to stop buying tickets on the bus that is), is that bus drivers continue to sell tickets to these individuals. At the time of doing so they might say “remember to buy your tickets next time” or similar but they do sell the ticket.

The other day when I was travelling on a bus route that has for a longer time been prepay only, a girl started to board a bus and attempted to buy a ticket in this manner. The bus driver simply said “we are prepay until 7 PM, see you then” and closed the door. She then said to passengers standing nearby, “They have to learn”. However harsh you think this approach is it will get the message across more so then grumbling but complying with people that want to be excused from rules.

While it is true that individuals can take individual action of discrimination claims against whoever they like, it is both expensive and time-consuming and piecemeal. If we are truly serious about ending discrimination (of whatever form) surely we need to take the approach that sometimes, some things are just wrong and the answer is just no. If we are as a country serious about social inclusion, increased participation and other good things then it is government that must take a more proactive approach and at all levels start saying no. Australians apparently believe in a fair go for all Australians. Sometimes that has to mean saying no.

Possibly Related Posts:


the cost of a vote

Posted on by
Reply

I perhaps should have warned folks not to get me started on election equity issues, but a good mate of mine added this to a comment on this post

Still distrubing to see so many polling booths inaccessable, though at least in the Marrickville LGA it’s better that it was at he last local government election.

Yes well — it might indeed be *better* but really that’s not saying much now is it? I know people from the last Federal election who had to get excused from their democratic right and responsibility to vote (it’s compulsory here in Australia) because they had assumed there would be at least one they could get into in their electorate( of say 20 polling centres), so it was too late to pre-poll or postal vote. Different electorate than the one refered to in the comment mind you.

As for me — I have to drive or be driven to cast my vote despite voting in an area where there are booths much closer than the one I will be forced to use.

How does even having to think this hard about how one is going to do what one is democratically entitled and legally required to do (quite apart from deciding who gets your vote), reflective of Australia signing the UN Convention on the Rights of People with a Disability 2 years ago.

Accessible buses are unreliable in this area on Saturday and a cab will cost me $20 from within the electorate to go vote even with my discount. How exactly is that fair? Almost less hassle to not bother voting and pay the fine that ensues. Very good for democracy. Not.

Possibly Related Posts: