... .... ... wobbly teetering blogging

MRI?...'I'll have what she's having'!

2012-01-29T14:30:00.000+11:00

Does climbing into an MRI machine push your buttons?? The claustrophobic and din aversion ones probably.

Over at Big Think, Kayt Sukel is tackling other possiblities - oh, all in the name of research, of course:

I donned a hospital johnny and was pushed back into the scanner’s tube, as ready as I would ever be to have an orgasm in an fMRI. The magnet started to spin around me. As promised, it was loud. It lasted the majority of my session inside the scanner, which was approximately an hour and a half. Even with ear protection, I could feel each click, clank, and whir all the way down my spine.
Just as I was starting to zone out, not into sleep exactly, but into something like it, the noises suddenly stopped. It was now time for the big show. Ready or not, I had to woman up and bring myself to orgasm. In a few minutes I would know if loud clanks and clicks, hospital johnnies, and a tight mesh head restraint could make the magic happen.
Hearing my cue, I took a deep breath and got to it. It may not have been romantic or sexy in there and, man, this mask thing was starting to get really uncomfortable, but I was going to orgasm no matter what. I powered through it, keeping my head as still as possible.

Umm, mri machines and orgasms - not two words I had ever considered in the same sentence - Anyone?? Bueller? Something to consider at your next mri appt? New Year's resolution perhaps?

And if you are wondering - cause no doubt you are - from this, the neuro scientists from Rutgers Universtity made the mind boggling discovery that:

...areas implicated in memory, integration of sensory information, and emotion also became active. As my orgasm came to a close, the hypothalamus turned back on, and reward areas like the nucleus accumbens and caudate nucleus were flooded with dopamine. That was what gave me that final rush. Getting to that point involves a variety of cognitive, emotional, and sensory components—even when it’s just you doing the work.

Is this a leap for womankind? Astonishing that it made her feel good? I think not. Astonishing that she felt good in an mri machine? Well!... It seems the research overlooks the impact this could have for ms-ers spending time in mri machines...

Surely raising questions as to whether there are other just as effective means that could be being embraced for those encountering mri machines? Let alone questions around the placebo effect??

Meg Ryan and 80s Big Hair in that scene:

There's no mention of seeking recruits for further studies. Nonetheless, next you spend some quality time in an mri machine, might you consider a whole different slant on: 'How was it for you?'

Have infusion, will sample rollator

2012-01-28T15:30:00.003+11:00

Ahh and you thought PML was the most daunting thing about Tysabri: OTT seating on the chemo day ward

My Tysabri infusions are turning into a surprising hub of info swapping and convivial ms insider info each month.

Month before last, airline travel assistance and aids turned out to be the conversation du jour - I promise it wasn't instigated by me, the discussion was already going on when I arrived. Thrilled, of course, to add my two cents worth (unasked or otherwise!) as one of the others was nervously considering travel o/s in a few months, and wondered if any of us had travelled recently. As it happened, one of the others with decades long ms had just gotten back from an extended sojourn in parts of Europe with her husband and daughters, while yours truly had done the long haul trip to Blighty a couple of months earlier in September. Ahh the zeitgeist hey.

Out of that conversation, it emerged that the aforementioned European jetsetter had recently purchased a Volaris S7 Smart - although, she had wisely desisted taking it with her o/s: romantic European cities? Hallo cobblestones for starters. Instead she had (successfully) made the most of a combo of borrowed and hired wheelchairs and her own crutches for the trip - so I was quite keen to catch up with her this time to interrogate her on how she was finding her rollator - and she would have it with her.

Plus she was more than happy to let me give it a red hot go, demo on the clinic floor. Alas, my camera snapping angles leave something to be desired and it doesn't look nearly as spiffy in the pic as it did in real life but fingers crossed you'll still get the gist:

the Volaris S7 rollator -look at those aligned swivelling wheels as compared to the supermarket trolley wedgie grrr below of a Made in China bog standard number...

Here's the lowdown:

Lots of the good
Indeed: a fab turning circle, lightweight, easy grab strap for vertical folding so remains stable and standing even when folded, internal cabling so no inadvertent snagging, easy effective braking.

I only tried it indoors on the clinic's smooth floors but its merits (I was reliably informed) included curb capable action and the bumpy outdoors. (There's a review over at US Amazon gives a good lowdown, too, although she(?) is referring to the S7 rather than the S7 Smart - the difference is in whether the cabling is internal or external, which looks like it may affect the price point too).

My fellow infusee had found being able to trial it for a week or so invaluable as was having the distributors come to her rather than having to go to a showroom.

Made from 're-useable materials' - well, I guess that is good. It sure sounds nice. I wonder what it means: you can put it out in the recycling?? Doubles as garden furniture?... Who knows?

Plus immediate improvement in posture and walking speed. There were two of us who gave it a whiz around the ward and the infusion nurses commented on how much more confidently we each walked straight away compared to our usual modes: me with crutch and her with no aid :P

The bad
There is a basket or bag available as extra. My fellow infusee had the basket (although not on the rollator that particular day). She was very happy with it, but it does (as is the case with many rollators) need to be taken off before the S7 Smart can be folded. So 'parking' it out of the way in cafes or such is still less than ideal.

A lot of good design features are available but not included as standard, so they still have to be purchased as add-ons. This extends to, not just storage options but, the back strap (pic'd above) to make sitting safer and more stable is an extra.

Ditto for a travel strap to hold it closed during transporting/ while stored.

The still on the ugly side
Well, the price. I understand that for something well made and durable it is not bad. But $450 as the starting point is still a nasty chunk of the hard earned to have to hand over and that is before including any add-ons (several of which I would find a significant drrawback not to have included) means some pause for thought ie could I just stay at home and be as social with poor posture and an ipad instead for the same money???!

Who What Where

In Oz, Rollators Australia is the sole distributor. It retails them for $450 (or there are sometimes second hand ones available for around $300). Accessories offerings as well, along with - curiously - a little pitch on the home page specifically aimed at ms-ers to click through to check out the testimonials from happy campers.

In the UK, Doability have them available for a couple of hundred pounds. (For those in Aus, although they are a touch cheaper than from the Aus distributor, the shipping estimate is over $1000 lolz!)

For those in the US over at All Terrain they are also retailing for just under the $300 mark (US) plus free shipping within the US. It also has some good pics of the (many) additional accessories available.

...And as Dabble mentioned (for rollators generally), it's worth checking out the Amazon monolith for some good prices ... although the shipping may turn into a deal breaker (esp. for those here in Oz).

Ooh, I have gone on a bit haven't I? Anyone else out there in cyber space sampled any of the Volaris rollator offerings? Good? Bad? Or Ugly?

some tempting crutch options

2012-01-20T14:47:00.001+11:00

Hmm, so I have been having a bit of an online wander around for spiffy crutches (rollators too but they are accumulating in a separate post).

Thanks to cranky grrl for her pointer to the Tornado crutch tips at Thomas Fetterman's. Sad to say, one of the significant problems I have had with my Cool Crutch - much as I wanted to declare them fabulous no matter what - is that the tip has proved less than fab on a couple of fronts:

1) wet weather the Cool Crutch is incredibly slippery:
I understand when things are wet the world is somewhat more hazardous but I was not prepared for the slipperiness induced with a bit of wet pavement and a smooth cafe floor the first time I used them on a wet day (very soon after I had become the proud owner). Very nearly went the overdramatic sixer as the thing slipped out sideways from me and became me supporting it rather than vice versa.

2) the Cool Crutch silencer for the zombie clunky noise appears to have worn off rapidly:
This has happened within six months of using them. It is a little disappointing as this was one of Cool Crutches' key selling points for me and an important factor in my decision to buy in the first place.

Cool Crutch tip after 8 months of infrequent use - admittedly I belatedly realise looking more than a lil skanky in this pic, oh dear

I understand that they are likely to wear out but at that rate that is pretty frequent replacement, and especially given it has not been in high use. Perhaps it is to do with me hurling myself around like a disgruntled elephant?? Whatever the reason, it seems I have rapidly used up all its elegant silent capacity. Clunking along with a friend several months ago who was using one of the more bog standard numbers - admittedly she does have a rather more elegant demeanour than yours truly, but still - I was surprised to realise that I was distinctly louder with my supposedly silent crutch than she with hers that had never come with any such claim.

Top end bottom-end tips

Hence reading about the benefits of the Tornado tip keenly noted.

I quote from the Fetterman site:

Tornado Gel Crutch Tips engineered pivoting action enables more of the bottom of these tips to engage the ground for amazing traction, even at very steep crutch angles.

Tornado tip from Thomas Fetterman - there's gotta be others roight??

Internet and globalisation: pro or con - or both simultaneously?
While I have drooled over TF stuff in the past - the internet both brings the distinct advantage of letting one know What Is Out There, alas the distinct drawback of all too often being taunted by tempting things just beyond reach because the supplier either
a) does not ship to Aus; or
b) does but at a prohibitive cost; and then
even if those factors are overcome there is:
c) the hazard of judging by look rather than being able to physically handle it to gauge its appropriateness, resulting all too often, in this neck of the woods, in a NQR aid where a slightly different product would have been more appropriate. Alas, this only able to be ascertained with the joy of hindsight, once the dosh has been handed over for both the product and the postage.

Often, it's not that I doubt the quality, it's just that I don't want to buy something that turns out to not be exactly what I need.

Which brings me back to Crankygrrl's helpful post on what a difference she has found the Tornado tip to be. Plus a tip rather than a whole new crutch is in a much more affordable price range ($15- $50 or so depending on which ones you order) than the one whole new crutches circulate at.

Alas, while the merits are vouched for and the doubts allayed, the next hazard presents itself: I don't seem to be able to order through the TF site from Oz at the moment - taunted hey!

Meanwhile....

Telescoping travel crutches

Of course, while I was over there, my gaze couldn't help but drift to other parts of the store - in particular to these somewhat tempting looking Dutch-designed QuickSteps that are collapsible (telescoping with memory re-set!) for storage and travel with a stable upside down standing option (I am a little wary of hygiene-wise... but there is an attractive vid they have put together showing it in action) for them when not in use. Because the other ongoing crutch hassle is, of course, the crutch itself tipping over and not being able to put it readily out of the way when it is not in use ie reaching to unlock the car door or to pay in a real live store!

Arbin's Quickstep telescoping travel crutch

Handing over the dosh variables

Thomas Fettermans is a distributor in the US for the Arbin Quickstep. Over there, they are retailing for the very best part of US$600 (approx. AUD$570 plus postage if you are able to successfully negotiate setting up an account).

There are also distributors through Europe (stockists listed on Arbin's webstore) and in the UK the groovers at Chic Aid stock them for around £160.

(Here in Oz the exchange rate comes out a lot cheaper to get them from the UK than the US at those price points, that is, approx. AUD $237 plus postage - again that is if you can successfully manage to create an account without a UK postcode, grrrr).

However, on Arbin's Dutch online webstore they retail for the very best part of €160 (which makes them about AUD $200 plus postage to Aus €62 (AUD$74)) for a grand total of €222 (AUD$274).

Shipping hazards
Unfortunately on the US Thomas Fetterman site and the UK ChicAid site, their systems do not display p&p figures nor even a ballpark and trying to set up accounts proves impossible with an O/S address despite the taunting option provided to select a country beyond where they are located.

Through the maker Arbin's site in the Netherlands no such prob's - there's even an option to request to be a distributor. At Aus p&p €62 (AUD$74) this still brings them in at substantially cheaper than the Thomas Fetterman before postage cost.

If you are in the UK, Chic Aid may be comparable as p&p to the UK with Arbin is €26.

Unfortunately, not able to check for shipping to the US from Arbin.

Temptations
Must say, I am seriously tempted, they are elegant looking (albeit, placing the cuff on the ground not the most appealing option for many locations!) - the Dutch seem to be giving the Scandinavians a good run for their money on well thought design of late (some very swish looking rollators coming out of the Netherlands too).

They also sell what look like some thought through accessories, such as clamps for on bikes, rollators and scooters; cuff pads, LED lights and some not too bad looking crutch covers ala in the mode that an umbrella might have a cover!

Of course none of that solves the original problem of sprucing my crutch-in-the-hand Cool Crutch back to suitable calibre....

Addendum:
In Oz the Fetterman Tornado tips approx. AUD42 plus postage ...via Independent Living Centre in NSW (links to a couple of regional NSW suppliers)

Ladeeees (sorry guys!) fab shoe news: courtesy of barking dogs

2012-01-15T10:57:00.001+11:00

Karen this one's for you!

Oh my goodness, I have just discovered barkingdogshoes and Kirsten Borrink's gorgeous board of 'cute comfortable shoes' at Pinterest. If you didn't know her stuff before, allow me...

I've snitched a few to show you why her cyber space sharing is just so feelgood and worth checking out her fab finds. While not all the shoes are wobbly teetering-friendly they come mighty close and with mighty temptations even when not. She is expert on cute comfy shoes and the darstardly constraints imposed by chronic illness thanks to rheumatoid arthritis.

Jambu via pinterest

el naturalista via pinterest

yummo Taos slipper action via pinterest

Too good.
Go on, head over and tell me you can't have a good time? - Either her blog at barkingdog shoes or the serious shoe candy at pinterest.

Enjoy!

[Some Technorati code everyone else can ignore, ta: 6V6FNC2MPMF4 ]

canes, crutches, rollators, walkers, wheelchairs ... and exoskeletons

2012-01-08T11:29:00.006+11:00

I blogged a couple of years ago about some prototype assistive walking devices in R&D by car manufacturing companies such as Honda.

Honda 'walk assist' in 2009 or so via Gizmodo

Nothing though that was close to being made widely available (and dubious even how helpful some of them could be). Ekso Bionics who have partnered with members of the Berkeley Robotics and Human Engineering Laboratory at the University of California, Berkeley in California have other ideas. Check this out:

Why yes, it does look like something out of almost every sci-fi movie/computer game you have ever seen. And true, you wouldn't quite want to abandon your wheelchair yet, but still!! How to make an impression, huh!

Their immediate plans for the coming year are to get it into physio rehab units for paraplegics but they are eyeing off its potential for multiple sclerosis patients within the next two-three years.

There's more about it at Inside Technology Spectrum.

Port Fairy's disability Nazi: the only PwD in the village

2012-01-05T11:48:00.022+11:00


Eastern beach Port Fairy - tricky but thankfully no disability Nazis on the beachfront

First, he stopped his ute behind us locking us in to the parking bay. Then he came around the side of the car, wrenched the car door open, thrust his head in and started abusing us: what the hell did we think we were doing parking in the disabled parking bay? Where was our permit? What the hell was our disability anyway? It was an outrage: people like us making it difficult for people like him who were disabled, local and had ms .... on and on he went, ranting and intimidating - and waaaaaaaaaay out of line.

No matter what attempts we made to respond to his aggressive, rude and inappropriate behaviour, he sneered and yelled and got more infuriated, having prejudged that we were not supposed to be using the bay and that it was his self righteous duty to yell at us and abuse us - the possibility that we might legitimately be using it apparently had never entered his mind.

The only disabled guy in the village
Unasked he spat out that he had ms, this apparently made him an expert on who was disabled enough to need to use a disabled parking bay. From sounds of it, only one person ever made the grade, that's right, rather like Little Britain's Daffyd Thomas, 'the only gay in the village', this ms guy with his crutch and his ute was presumably The Only Disabled Guy in Port Fairy.

False pretences
When we tried to politely point to the permit on display on the dashboard, even picking it up and moving it closer for him to see, he then implied that we were using it falsely. His rant morphed into a demand we give it to him to record the issue number on it. Yeah, rioght buddy cause you've been so convivial and reasonable so far, sure I'm going to hand over my permit to a random aggressive self-righteous member of the public threatening me in my own car - NOT.

Fellow travellers
When we then had the audacity to try and tell him that actually today was his lucky day as, even though it was none of his business what condition results in someone using a disability permit, fancy that, as it happened, not one, but two of the people in the car also had ms. Not so surprisingly, he scoffed and snorted at this: as if anyone else in this village could have a disability as well as him, let alone the same medical condition, let alone TWO people at the same time, hey!

Local rules: modus de ignoranass to go thanks
Apparently with all his ms and disabled expertise, his rule of thumb was still the classic modus de ignoranass that someone should 'look' disabled enough to used a disability parking bay. Wow, when ms itself comes with so many less than obvious exterior aspects ... I wish I'd thought to ask: was he sure he had ms?? Ha.

This, putting aside that it was the middle of a 42C degree with an appalling moisture-sucking northerly, that one of us had staggered to the car using a crutch and had had to lift each leg with hands to haul herself into the car and had had to ask someone else to drive and the other had not been using a mobility aid but was obviously unsteady and agonisingly slow with the few steps between the parking bay and the supermarket, it seemed weird that we were even having to attempt to converse with this ranting angry local man with his mis-directed fury. A tourist town in high summer with ~~only one~~ four disabled parking bay on the main street - ~~surely, drawing the problem to the attention of the Moyne Shire council and the local newspaper demanding better parking and access would be better focus for all that fury and anger, yes?~~ Hm, turns out the spot we were using is not even the only one in the street and I've since been informed there are actually six disability parking bays in the town, four in the street where we were parked and two around the corner in the next.

Sackville St Port Fairy - scene of the disabled parking bay rage

Beach rules: look before you leap
Nonetheless as my Kris Kringle gesture to Port Fairy's angry ms guy in his white ute - wielding his crutch to race back to his car before we had even managed to teeter out of the supermarket so he could block us in - I've taken the liberty of writing to the Moyne Shire council about the value of another disabled parking bay in Port Fairy's main street.

New Year resolve?
Given one in five have a disability plus all those cashed up travelling baby boomers thesadaze - not to mention self-righteous pre-judging Port Fairy locals - seems like an easy solution for a small town wanting to attract outta town tourists for its livelihoods. Yeah? Here's hoping.

a Port Fairy beach deep breath - view from the very accessible surf club balcony

Addendum: although given there are already four in that street perhaps the answer is not as simple for angry ms guy as I was keen to presume :)) ?

~~Failing that,~~ perhaps more publicity on how to hire the beach wheelchair from the Visitor Information centre and a spot of deep breathing down on the beach front is an alternate way of diffusing tension - not just for the visitors to the region, yeah? Mebbe?... any suggestions most welcome.

No matter, a very happy new year from just beyond the Great Ocean Road at Port Fairy.

a pick up stix pickmeup :))

2011-12-17T16:47:00.004+11:00

There's a lot of potential to inadvertently say something vulgar when wanting to draw attention to crutches (see what I mean!). The look of horror on my father's face after I asked him to 'grab my crutch, please' and his demure response that really, he'd rather not remains indelibly etched into the memory banks and has drawn pause for thought in care for my language around crutch-speak ever since! So not surprising this clip via Rolling Rains caught my eye, put together by the guys who do away with 'crutches' in favour of 'stix' - yay.

Here's a spunky bloke with a zeitgeist handle on grabbing a crutch in a distinctly feelgood manner for all concerned: participant and viewers.

It's a clever ploy for publicity by Canadian Side Stix - you could do a lot worse as ways to promote a product. As I have a 'crutch review' lurking in the drafts folder this seems an apt precursor/tantaliser - and a lot of fun to boot. (Confession: I have always been a sucker, and only moreso as I have become an extreme wobbly teeterer, for an adept hacky sacker, and there is no doubt this guy would be one of those.)

There's also a cute map on SideStix website showing where SideStix have been - wouldn't I love to add Australia.

Warning to wobbly teeterers: severe balance envy likely to be induced, but well worth it.
Enjoy

on this basis ms-ers should be ruling the world

2011-12-10T18:13:00.000+11:00

“Good decision making is not a trait of the person, in the sense that it’s always there,” Baumeister says. “It’s a state that fluctuates.”

His studies show that people with the best self-control are the ones who structure their lives so as to conserve willpower. They don’t schedule endless back-to-back meetings. They avoid temptations like all-you-can-eat buffets, and they establish habits that eliminate the mental effort of making choices. Instead of deciding every morning whether or not to force themselves to exercise, they set up regular appointments to work out with a friend. Instead of counting on willpower to remain robust all day, they conserve it so that it’s available for emergencies and important decisions.

“Even the wisest people won’t make good choices when they’re not rested and their glucose is low,” Baumeister points out. That’s why the truly wise don’t restructure the company at 4 p.m. They don’t make major commitments during the cocktail hour. And if a decision must be made late in the day, they know not to do it on an empty stomach. “The best decision makers,” Baumeister says, “are the ones who know when not to trust themselves.”

via NY Times

striving for poetry in motion: International day of People with a Disability

2011-12-03T20:03:00.020+11:00

Hey Bertha, You've come a long way, babe ...um or have you??

A Rainy Morning via 3quarksdaily

A young woman in a wheelchair,wearing a black nylon poncho spattered with rain, is pushing herself through the morning.You have seen how pianists sometimes bend forward to strike the keys,then lift their hands, draw back to rest, then lean again to strike just as the chord fades. Such is the way this woman strikes at the wheels, then lifts her long white fingers,letting them float, then bends again to strike just as the chair slows, as if into a silence. So expertly she plays the chords of this difficult music she has mastered, her wet face beautiful in its concentration, while the wind turns the pages of rain.

by Ted Kooser
from Delights and Shadows
2004

To the non-literature lovers out there, this may come as a shock to you, but time you found out nonetheless: just as humans are divided into 'dog' people and 'cat' people, 'anchovies on pizza' people 'gawwwwdNO no anchovies on pizza' people, so to our world is divided into 'Charlotte Bronte/Jane Eyre' people and 'Emily Bronte/Wuthering Heights' people. And never the twain shall meet.

Can you pick where my preference is going to fall?
I think you can. Perhaps even digress to bust out yr best Kate Bush moves, over to you Noel:

Ahh Noel

Quite frankly Jane Eyre has annoyed the hell out of me from ever I remember first reading it in my teens. I was always appalled at how a principled serious girl like Jane Eyre could so blithely excuse Rochester's abominable treatment of Bertha, the rather unwell woman, uh not to mention that little detail of you-no-know-no um being his wife, he imprisoned.

But for a long time, this attitude to disability, ongoing illness and chronic medical conditions has been seen as par for the course and unexceptional. There is a disconcerting proportion of the English canon condoning and contributing to just such attitudes. Thank gawds for the likes of Jean Rhys and the Wide Sargasso Sea is all I can say. Well, actually here's a few more things I have to say:

Well, it's back: today is International Day of People with Disability (IDPWD) - doesn't that just 'roll' off the tongue... not. Hmm perhaps it's kind of appropriate that it has such a clunky acronym.

The IDPWD website explains that its objective is for the UN-sanctioned (sanctioned?? sounds like a war zone, then again perhaps not so far from the mark either...) to:

increase awareness of the benefits of the integration of people with disability in every aspect of political, social, economic and cultural life.

Rather a shame then that the very language used, perpetuates that Us And Them dichotomy inherent in a medical model of disability.

If you're wondering what the hell the medical model of disability is, here's one definition (from The Open University):

Medical Model:
Under the medical model, disabled people are defined by their illness or medical condition. They are disempowered: medical diagnoses are used to regulate and control access to social benefits, housing, education, leisure and employment.

The medical model promotes the view of a disabled person as dependent and needing to be cured or cared for, and it justifies the way in which disabled people have been systematically excluded from society. The disabled person is the problem, not society. Control resides firmly with professionals; choices for the individual are limited to the options provided and approved by the 'helping' expert.

The medical model is sometimes known as the ‘individual model’ because it promotes the notion that it is the individual disabled person who must adapt to the way in which society is constructed and organised.

The medical model is vigorously rejected by organisations of disabled people, but it still pervades many attitudes towards disabled people.

Some of the year's model examples:
I blogged briefly about IPWD last year in relation to the startup of the national Australian broadcaster's 'Ramp Up', a portal for all things disability related and today is its first birthday. Happy birthday Ramp Up.

Lots has happened in the disability universe since then, not least around a National Disability Insurance Scheme (NDIS) model for Oz.

On the one hand, the Labor Party just endorsed the NDIS at its conference today and committed to the design of the NDIS - then again a very similar scheme was tabled for parliament the morning of the Whitlam Dismissal and consequently through no fault of its own disappeared from sight for 30+ years. Let's just say, pause for thought under the current wobbly Slippery minority government... just sayin!

Meanwhile, on the other hand the current Labor government also, and rather more quietly, just announced new tables for disability assessment that come into effect 1 January 2012 for those applying and receiving federal disability income assistance that involve rather a lot more hoop jumping and 'the view of a disabled person as dependent and needing to be cured or cared' for those who requesting such help.

Example II
On the one hand, new building standards came into affect for access to new buildings, on the other hand they were so watered down and contain so many exceptions and yeahbutnobutwhatifs that Vicky Pollard would be proud. Thereby promoting the 'notion that it is the individual disabled person who must adapt to the way in which society is constructed and organised'.

More examples, a different model?
I could go on with the neo-liberal dodginess n doublespeak...
Instead how about resisting disabling black and white attitudes, and what better than subverting attitudes by proffering, indeed insisting upon the vitality of literature, music and poetry in motion that acknowledges all sorts, about all sorts, with all sorts but resists insisting on any particular sorts?

We few, we happy few, we band of brothers;
For he to-day that sheds his blood with me
Shall be my brother; be he ne'er so vile,
This day shall gentle his condition:
And gentlemen in England now a-bed
Shall think themselves accursed they were not here,
And hold their manhoods cheap whiles any speaks
Crispin's day.

- putting the gender bias neatly and conviently to one side ahemm ... it is from Henry V’s Eve of Saint Crispin’s day speech via the eloquent Kristin Hoggett, a poet, a poet agony aunt and a woman who considers poetry to have saved her life after a dire accident - you can read her thrilling example of the success of poetry in motion over at The Smart Set.

Bless!

**This blog post is particpating in the blog carnival for IDPWD - thanks to Carly Findlay's blog hop for International Day For People with Disabilities - find out more and particpate too by checking out her tres cool blog at Tune into Radio Carly. Enjoy.

crimes against womanity pussy footing around

2011-12-01T20:00:00.002+11:00

just been spammed in the comments by an online shoe store selling Louboutin - ha!

Oh goof grief: SJP in tots ridic Louboutin 'lion's paw' last month

somehow this would not encourage me to eat meat

2011-11-20T14:41:00.006+11:00

Lady Gaga shoes albeit making a different point about the political and the personal of meat, women and ethics

For anyone who has ever doubted that their personal eating choices are a political act that matters:

The idea of in vitro 'meat':

The process involves extracting stem cells from a cow and soaking them in a nutrient-rich solution which converts them, with the aid of electrical impulses, into muscle cells. Those cells could be made into sausage or hamburger meat.

Wasn't there a science fiction story about this sort of wacky convoluted thinking? I admit I don't eat meat - quite frankly, if I was put under duress to eat meat, I'd rather eat an occasional cow steak or chicken breast from a real once living creature than be faced with anything contrived in this Frankensteinan manner that seeks to de-couple food from nature and re-construct it as a manufacturing process.

The premise that energy and environmental requirements involved in Westerners eating as much meat as they do is a compelling one and one that is not new (thanks Susan George way back in 1976 with How the Other Half Die). However, it reads as dreadfully dangerous false reasoning to infer from this premise that test tube lab 'meat' is even one possible conclusion to draw.

Extreme makeover indeed.

Errk

Meanwhile back over on planet reason:

Singer's seminal Ethics of What We Eat

the joy of unsolicited ms advice, opinions and saviours

2011-11-14T23:15:00.008+11:00

Dido: remember me and not my fate

Sadly the Multiple Sclerosis Sucks website remains defunct (despite the semblance of a facebook page proffering the tantalising prospect of its return). For those too newbie to know - it really was the bees knees of MS uncommon sense.

Particularly that page of dastardly platitudes people proffer accompanied by useful retorts; it was the equivalent of a steaming hot water pressure shower in a world overrun with cheery 'lukewarm baths' of good intentions (to badly paraphrase the even more fabulous and much admired Barbara Ehrenreich).

The last few ~~days~~ ~~weeks~~ months I've found myself wishing it was still around - or failing that that I had at least thought to commit some of its pither savvier retorts to memory so I'd have them at the ready for well-meaning stoic types choosing to foist unsolicited advice and opinion upon me.Maybe it's the weather but it feels like there's been something of a deluge of late.

You know those comments? Those ever so earnest well meaning ones ....where a response is required but the only ones that spring timely to mind require a rather firm biting down on the tongue, to avoid being hailed as a totally rude nasty ingrate being so bold as to point out the rub in what they have just proffered.

Here's a quick bitter and twisted memoir from my MS potted history so far (yes, I am feeling the disgruntled need for a spot of long service leave from the full time ms job, my boss won't 'let' me resign!):

10. 'Well, you've always liked to be different' - this one hails back to just after my diagnosis after telling the Parents of my diagnosis.

9. A friend saying it with flowers: sending lilies after hearing of my diagnosis. Lilies, hallo!! In my world, lilies have always been associated with funerals and death but a quick scan of the ubiquitous google suggests perhaps I have been too harsh and he could also have been commenting on my 'purity' and 'virginal' qualities - cause that makes so much more sense!!

Dreaming of lilies in winter signifies frustration of hopes and the premature death of a loved one.

It’s also a popular funeral lily; it can symbolize innocence and purity regained as the soul passes on to Heaven.

8. 'Oh, that makes me tired too/Oh that's difficult for everyone' - my mother's favourite rejoinder after she has asked why I didn't get to do something I had intended or that took a loooooooot longer than it rightly should have under other conditions.

7. 'STOP' - ahh one of those father-daughter moments as we reached the curb of a road, the command came accompanied by him barricading my way with his hand and arm across in front of me just in case I might reckleslly scamper off in that way toddlers can and do. Apparently, to him using a walker means I no longer know how to check for cars when I cross a road. Toddler: no, dummy spit: damn rioght.

6. Meanwhile at the other end of the spectrum, ie staff security at public events observing that: 'She's not even disabled'. Apparently, only people in wheelchairs or with guide dogs 'count'. I, on the otherhand, am one of that evil cohort just lurching around in a jolly attempt to pull the woolly wool over the eyes of gullible staff.

5. 'Why would fatigue and needing to lie down be a problem for you: you like to read. So why don't you just read?' - this one from a friend who had just spent the previous week laid out flat on his back unable to move due to back pain.

4. 'Have you thought about not watching the weather forecasts?' - from another 'well meaning' friend after I made the mistake of (admittedly earnestly!) trying to explain why the unexpectedly hot weather had resulted in me cancelling our plans.

3.'You look so well - except for a slight limp' - yes, a version of that old chestnut 'but you look so good'. What really galled was that it came out of the mouth of my neuro's receptionist last week.

2. 'We don't mind' - this one crops up a lot and also particularly riles. Sure, tell me I am being ungenerous to suggest if the tables were turned they might just suddenly find they minded Quite A Lot. When I try to suggest it can be quite confronting getting stuck, falling over, or not making it to a loo pronto in public spaces or not being able to carry my own drink or some seemingly trivial action that is not considered 'usual' for any one over the age of oh I don't know say about five... ahhh yes, how can I put this: you may not mind, but I DO.

1. 'Repent, God is punishing you for your sins' - from a god botherer (who else). Good grief. This one still leaves me gobsmacked. Admittedly, this was not to me but hurled (more than once - some people have all the luck hey!) to a good friend by some evangelical types who took time out from yelling parts of the Old Testament to especially tell her that her illness was all her own dastardly doing. I found it - and still find it - astonishingly repugnant and shocking even at second hand and at a distance of several years.

Responses? Bueller??
'Bless' apply intonation as necessary

I know, I know, thank you, Woody Allen: indeed 'if only neediness and begging were attractive qualities'!

flying into the thick of it

2011-11-06T17:56:00.004+11:00

I mentioned awhiles back about the On a Wing and a Chair project that my friend Dave has underway. The culmination of the plan is for him to do a solo flight around Australia next year in a plane he has modified so he can fly it irrespective of his quadraplegia.

another one of the many stunning pics from Dave's trip: this one as he flies past the Flinders Ranges in South Australia

He has just completed another 'mini' trip, after his three week Central Australia one in April - this time to Cameron's Corner and the Dig Tree from Tooradin (in the far south east of Australia for those elsewhere). A distance of approx. 1,400km give or take plus that again to get back (here's what it looks like on google maps). Cameron's Corner is the point where Queensland, NSW and South Australian borders meet... others might call it 'the middle of nowhere'.


Add caption

Some more amazing pics of interior Australia and the On a Wing and a Chair's adventures that have ensued over at his blog.

something is rotten in the state of your diet? Not in Denmark

2011-10-19T21:14:00.005+11:00

inappropriate shoes: say 'cheeeeeeeeeeeeze' ...

**Warning links may contain seriously disturbing images of cheese and substances meant to resemble cheese...

So refreshing, this little gem about savvy Denmark's tax on saturated fat (with widespread coverage, ha haa, at least in Oz). Yeah. Seems forward thinking on good design extends well beyond rollators...

Butter, milk, cheese, pizza, meat, oil and processed food will all be taxed if they contain more than 2.3 per cent saturated fat. [ABC news]

Especially when contrasted with the the butter-sure-wouldn't-melt-in-those-official-mouths over in the grand ol' You Yes of Yayy, where the lil miss muffle-it government has subsidised companies to increase patriotic citizens' consumption of cheese (do note, the use of the word 'consumption' rather than 'eating'). For anyone who wants to be put off eating cheese, and particularly processed cheese - who needs a tax when there are deals like these to be had? - look no further than this disturbing article from late last year to be put off for life (or the orginal investigative piece in the NY Times by Michael Moss).

One of the easiest strategies to boost sales is to convince fast food companies to spike their products with extra cheese.

DM reported that its efforts boosted cheese sales by 30 million pounds that year. That's small curds compared to the "Summer of Cheese," a joint effort by DM and Pizza Hut that shifted 100 million extra pounds of cheese from the stockpiles to the American consumer in 2002.

Americans now eat an average of 33 pounds of cheese a year, or nearly three times the rate in 1970. In addition to being rich in protein and calcium, cheese is high in saturated fat, salt, and calories. Cheese can be part of a healthy diet, just not in unlimited quantities. [Big Think]

glug glug glug

Blood and brain curdling, says I.

Continuing the jaw dropping displays of 'food washing' is this little number that appeared in September 2011 in the Washington Post, proposing that processed foods can be 'good' for you. Further drilling down ie actually reading the article, suggests a slippery slope on what actually constitutes 'processed food'. It goes on with an additional caveat that it is not advocating that all processed foods are automatically good; the uncharitable might suggest the heading belies the article's actual detail?? Hmmm.

MS-ers and their families who already embrace the Swank, Jelinek, Wahl or similar theories on what constitutes healthy eating approaches will have already weighed up the advantages of minimising sat fats and will, no doubt, be tip of the hatting to debonair Denmark - with these articles methinks, it becomes hard not to ponder the idea that those mindful appoaches are just as savvy for all. MS advantage for all?

As Horatio might well ask, To what issue will this come?

Friday faint praise: the idea of a wheelchair ramp

2011-10-14T11:26:00.003+11:00

via Wooster collective

wheelchair ramp fails at smosh.com- okay, at a streeeeeeetch some of them might have been designed for lugging other sorts of things like bikes (why you'd take a bike to the beach I am not sure...) or luggage, perhaps, down steps but not all of them can claim so...

award for bladder urgency and poor decision making ...

2011-10-05T14:28:00.001+11:00

Fine for some

Ha
Well, okay, actually the award is regarding the connection between bladder urgency and poor decision making.
Consequences, dare I suggest, those with bladder (or other!) urgency know all too well, now recognised by 'official' scientific research.

This, from the ABC news site, on the awarding of this year's IgNobels:

...delaying a trip to the toilet causes people to make bad decisions are [sic] among the winners at this year's IgNobel Prizes.

The IgNobels are awarded each year by the Harvard-based Annals of Improbable Research as a light-hearted counterpart to the Nobel Prizes, which will be awarded next week.
The prizes are intended to celebrate the unusual, honour the imaginative, and spur people's interest in science, medicine and technology - once they stop laughing.
Most of the winning researchers appear happy to go along with the joke.
Dr David Darby, Director of the Behavioural Neurobiology Laboratory at the Mental Health Research Institute of Victoria, says winning an IgNobel is a mixed honour.
"We're delighted to have the research recognised, but the fact that people are laughing at it is a bit disconcerting," said Dr Darby, who is part of the team that received the IgNobel prize for medicine.

The study, published in Neurology and Urodynamics earlier this year, was the first time anyone had looked at how delaying the need to urinate might impact on mental processes.
"Our discovery was part of a whole line of research that looked at things that might impair cognition, including alcohol, prolonged sleep deprivation and white noise," Dr Darby said.
"In a situation where people can't void their bladder for any length of time, their attention to detail and ability to manipulate information is equivalent to someone with a .08 blood alcohol level."
Dr Darby says there are several possible explanations.

"One possibility is the amount of pain felt by someone with a full bladder; another explanation is that the brain function involved in inhibiting urine flow is located in the inner frontal part of the brain, in close proximity to the areas responsible for motivation, attention and working memory," he said.
"The final possibility is that people simply become obsessed with holding on and can't think of anything else."

Dr Darby says the study has serious workplace implications: "If people are forced to stay on the job when they need to go, there can be safety and other ramifications."

The beer, the skittles ... and the washing machine hazards of social disability

2011-10-01T16:25:00.008+10:00

Spunky multi-talented Ramp Up editor, activist and standup comedian Stella Young aint got ms but her insights into social disability are all too pertinent and pithy:

Mia chats to Stella Young at Mammamia

gold! music to ms ears... ms society scholarships

2011-09-29T20:15:00.013+10:00

talented bluesman in action with lap guitar

Winners are grinners!
My spunky talented muso mate (and don't we all need more of them :P) Sascha has won one of this year's MS Society's Go for Gold scholarships. Yay Sash, molto congrat's. And kudos to the scholarship selectors for showing such smarts in their choice, says I.

Here's a couple of my firm faves to sample: a spine tingling rendition of that ~~70s~~ eeek 50s classic Fever. (Unfortunately, I can't quite get it to open in a new window or paste it within this post...alas...)

However, the very special: When the Body is Empty IS all systems ago go:

MS tangible feelgood helpful help
The one-off $2000 scholarships (and a couple of $5000 ones) are designed to help those with ms 'fulfill a dream' with categories such as travel, arts and education. People in Victoria, NSW and ACT can apply. Here's some dreams of past recipient winners that have been helped out by the award.

Nice to be able to applaud the MS Society for a change (as compared to my more usual grumping about it). Every year in Victoria, ACT and NSW there is Mega Swim swimathon action over summer and most of the fundraising from it then goes towards Go for Gold scholarships.
Applications close mid-year each year and winners are then officially announced in October on the MS Australia website.

I hope there is a similar scheme run by your local MS Soc and if not, let them know they really should get on with getting one going, yes??! Raather feelgood if you've been/are having a particularly crappy time of it. If you're in Aus and been feeling a bit mope-y and whingy with dem Holly Golightly mean reds or been on an upbeat and rarin to go overachievin trail consider applying in the next year's round.

PS And for anyone who with the luck to find themself moseying abouts in the NSW southern highlands this coming weekend you can listen to Sascha at Joadja winery.

actual airline assistance: and an Emirates Airline unrant

2011-09-28T19:16:00.008+10:00

a quintessential English summer: super ms friendly

Here I am in a quintessential fading English summer - the locals are rueing the lack of a summer (as if it were an aberration from the status quo on English summers...) but yours truly is finding it purrrrrfect ms weather: everything lush and green, a sun that peters out after an hour or so in the morning, yes-bring-the-cardy weather by mid-afternoon, threatening possible rain showers by dinner; par exellonce, non? What's not to lerrv?

And yes, the process of getting here proved far less antsy too (thankfully) happily belying my hasty emirates-over-the-phone-rant-.

I decided it could produce no greater good for humankind to raise my hackles at over-educated call centre staff's Pavlovian trained responses of 'helpfulness' so did not ring them again before travelling. Plus a quick glance at my crutch was enough to reassure that it was not going to be a controversial matter whether it would be deemed under the 190cm 'large item' limit for the cabin of an airplane.

At Melbourne Airport, we were quickly swept over to the business/first class checkin where the classy checkin staffer with her stylish hat/veil combo could not have been more helpful or unintrusive. 'Of course' she would check and arrange transfers for me. 'Did I want assistance to the gate now?'

Turned out unasked she quietly thought to and even managed to swing me a better seat with more leg room (and baby free!) for the second leg from Singapore to Dubai - any further forward and it would have been business class.

Singapore sling
At Singapore, assistance proved to be a tad overkill. I was whisked the 20 or so metres from the disembarking gate around to the embarking gate with an hour and a half or so to then wait while the staff changed over, the plane was re-fuelled and the cabin cleaned. My attendant 'parked' me in a corner, said he'd be back and promptly disappeared.

We were middle of a never-ending night by this stage. The German couple next to me attempted to distract their two young children - more successfully, I can not refrain from adding, than they had achieved over the past 8 hours on the plane. The littlest was particularly fascinated by the airport wheelchair. The adults avoided even incidental smile-we're-al;l-in-this-together eye contact with me, preferring to speak to each other and their children in their native tongue, all that is except for one choice sentence in English from the mother to the father about how it was all very well for single travellers, they didn't know how easy they had it. Hmm. I was a few moments registering that me plonked in the service chair was the only 'single traveller' in the vicinity, surrounded as it turned out by a multitude of parents and small children/babies (the less encumbered dispersed further afield to the shops and caf's in the airport).

Apparently travelling alone with wheelchair assistance looks rather grass is greener to a German sleep deprived mother of two toddlers travelling with her very abled-bodied husband ... who knew??

Dubai derby
At Dubai, the neverending story of a night morphed into a neverending early morning and somewhere between my fourth and fifth airline breakfasts, an officious serious young woman shepherded the motley crew of 'passengers wanting assistance' to a herding room specifically for those needing assistance and their travel companions. There was a token 'shop' set up in one corner selling scarfs and perfume and behind it a self serve coffee machine but otherwise we appeared well quarantined from Dubai airport's megalomania of shopping pavilions on steroids and consequently also quarantined from making offerings token or otherwise to appease the merciless gods of consumerism. Ahh well, no doubt all for our own good.

initial dire prospect at Dubai airport that that grey box to the left would be the only caffeine supply in the disabled holding space

Then just as I started to register the dire consequences this meant for my caffeine imbibing, two staff from an ubiquitous UK chain alighted the Charlie and the Great Glass Elevator of a lift and proceeded to wander among us, politely wondering if anyone fancied a coffee by any chance! No dirham? No problem. Not only were they prepared to accept foreign currencies but they saw nothing odd in me charging a $4 coffee to my credit card. Ahh globalisation privilege indeed.

Dubai airport's Great Glass Elevator in the corral for those requiring assistance

Received and downed in the nick of time, as the aforementioned officious young woman reappeared, to scoot a gaggle of us up the lift (lo and behold there were all the shops - at least I knew for next time) and escorted us onto a mega golf buggy, beeps ago go. I clambered in next to a woman with a particularly fabulous striped hijab. I couldn't refrain from mentioning to her how much I admired her headgear. She muttered a thanks but looked relieved when the buggy driver veered to a sudden halt and told her this was her gate... oh well, wouldn't I have loved to have been able to paparazzi snap her? (I can't help thinking a more optimistic story of Babel's Tower whensoever I pass through Dubai airport.)

Turned out my gate was furthest and while several others had alighted also requiring assistance earlier on, it seemed now I'd been split from the rest of the crowd and the buggy carried me alone. My buggy man turned things up a notch, dare I suggest, showing off his rather dab hand at hurtling along and ducking and weaving potential calamity between the buggy and jet lagged inattentive stray passengers in his path.

I asked if he and his fellow buggy drivers were ever tempted to dabble in a spot of buggy drag racing perhaps in the wee wee hours down an otherwise deserted concourse?? He didn't answer but I'm sure I detected an extra gleam and glint in his eye as we hurtled to my gate. Ahh secret buggy driver business.

London landing
London (Gatwick) had two buggies awaiting at the gate and these were rapidly filled - wow and there were still a couple more people looking forlorn as we jaunted off - not quite the cracking pace of the guy in Dubai but still an impressive effort. We were through customs in no time.

Gotta lerv that straight-to-the-front-of-the-queue that the buggy/chair commands. Not so much lerrv for the compulsory pat down/feel up that a wheelchair apparently automatically construes the security staff to enforce, irrespective of protests or any option to walk through the metal detector if only they would let me step out of the wheelchair for a mo'. Oh well, we all know what beggars can't be ... hey?

My formerly pristine green crutch emerged not unscathed - attacked by some unruly overhead luggage somewhere along the way after a grumpy airline steward played dumb that she could've stored it in upright storage for me - but still serviceable. I guess it was in need of acquiring a patina of dents and scratches to get it 'properly' worn in.

:( awwww travel scarsfor the 'Cool Crutch'

And so popped out landside with crutch and roll-y suitcase all too easily to hand into a fading but super ms-friendly English rose summer.

Thanks Emirates Airline. Ditto Singapore, Dubai and Gatwick airports for some super efficient and impressive service amid what are some mind boggling logistics when it comes to shunting thousands of people around.

off topic: unexpected spot of banff nostalgia

2011-09-07T00:11:00.002+10:00

typical day heading to the 'office' in Banff, out the front of our place, circa late 20C
(apparently the white collar on the bull indicated it was a particularly aggressive one, no info on how someone got a collar onto a particularly aggressive bull...)

the view after hahaa thoughtlessly walking(!) to the top of Sulphur Mountain

ahh happy daze linger

wheelchair access vs disabled access?

2011-09-05T17:34:00.001+10:00

This is the entrance to the chemo day care ward I come to every four weeks for my tysabri infusions. I've been having the infusions for well over three years now. That's a lotta times walking past the below sign. It's only last time as I walked in I actually took note of this sign and wondered what the hell it actually is meant to indicate. Hmmm.

Ahh not sure if it is quite able to be read in the sign above, see below for up closer view:

And one more view: this time exiting from the hospital entrance:

requesting transit assistance w/ Emirates Airlines rant

2011-08-31T19:01:00.008+10:00

computer says....!!!!!

Hm, I never did get around to my post on navigating airports (and airlines) with a rollator last year and now that I am about to take an international flight again the memories of the battle of mindless discriminatory bureaucracy are coming flooding back. Not least because when I rang the airline this time to advise I would have a crutch (yes, sans rollator this time - it was more hassle than it was worth) and to enquire about airport assistance for my transfer at Dubai and through Gatwick it suddenly all turned pear-shaped and too late the angst and fuming of last time (that I thought I was now such a much more even-keeled person to be able to avoid) came surging back.

Exact crutch height

Things started to deteriorate when the person at the other end of the line representing the airline demanded I tell him exactly what length my crutch was. Not having it to hand, I told him I didn't know but given I am 158cm it must be significantly less than this, yes? Not good enough. He rebuked me repeatedly that it was a 'security measure' and I was being difficult when he was trying to help.

No access to crutch
Then he told me that I would have to check it in and be wheelchaired (I use the word advisedly) from the checkin counter to the plane, between the transits points and then disembarking off the final plane to the meeting point.

I queried this (not least cause this would be a pain in the proverbial), explaining that when I had last travelled with the same airline they not only had let me take my crutch to the gate and have it stored in the cabin but that this had turned out to be a lifesaver as the airline also lost my rollator that was checked in and it did not come through until a day and a half later so it was fortunate I at least had had my crutch with me. Consequently, I am extremely reluctant to risk not having it with me this time either.

Ooooooookay, so he finally capitulated that I might be able to take the crutch onboard but I would have to tell the airline exactly what height it was. Puhhhlease. (I didn't even bother going into the fact that its height was adjustable...)

When I asked, why this was different to last time I had travelled with this airline and different to any other time I have flown with a crutch - where it is checked through airport security and I have then always taken it to the gate and then asked the staff to store it as I do not use it in the cabin - he just kept reiterating that I needed to understand it was a 'security measure'. Grrrrr.

If there's one thing (and yes, actually there are many) designed to have me see red it is talking in circles with telephone frontline staff who only have one line they repeat - sorry, two, the next one is along the lines that they are terribly sorry I am being so unreasonable when they are just trying to help me .... double grrrr - apparently answering my questions is not part of trying to help me. I take it they have very set rules on what said 'help' is.

Security measures

When I asked why it was a security measure to take a crutch on a plane that will have been checked through the airport security, he eventually told me that 'large objects' were not allowed onboard. I asked him what constituted a 'large object' but he made it clear I was just being obnoxious to want such specifics. After some more exasperating words with him and by him, we determined that in actual fact the problem was he didn't know what constituted a 'large object' and that he needed to enter a figure in the computer to proceed. For Little Britain fans 'why yes, the computer does says no'.

Oooookay, anyway seems we getting somewhere, albeit not very far somewhere. Despite my marked delinquency in not being forthcoming on what the exact height of my crutch was, I said I understood that he needed to know the size of the crutch but that I would have to call him back with what that measurement might be(!!) given telling him less than 150cm was not satisfactory because: I DID NOT KNOW. Yes I was talking in very slow large enunciating capital letters by this point. So much for don't sweat the small stuff, hey?

Providing irrelevant private details

Next question: What is my disability?
Me: HUH?? I have a mobility problem.

Him: yes, what kind of mobility problem.

Me: Look I just want to know if I can have wheelchair assistance for my transit at Dubai. As we discussed, it is a big airport and I fatigue quickly. I don't see why you need to know my medical condition. I have explained that I do not need assistance in the cabin and that I can manage. Why should you need to know more than that?
Him: well, this will have to go to 'operations' and be assessed by a doctor and determined whether medically we will allow you to fly.
Me: HUHHHHH!??? Since when has this been necessary? I flew with Emirates last year and this was not required.
Him: You will not be allowed to fly unless you tell me what the medical condition is.
Me: Forget it. I don't want assistance then.
Him: I'm sorry but that is not possible, I have noted on your file. You will not be allowed to fly unless you have a doctor's approval.
Me: Wha....? I just want to know if I can have assistance in the airport, I don't understand why you need these other details. I have never had to supply them before when flying.
Him: Excuse ma'am, do you mind if I just check something with my supervisor.
Me: NOT at all.

'Large objects'
So he comes back and informs me that he has found out a 'large object' is anything longer than 75 inches. As I only know metric, this doesn't mean much to me, although I know that 1 inch is more than 2cm; soo ahh 75 inches is at least more than 150cm at the most rudimentary conversion. I thank him for this piece of information, resisting for fear of being labelled with further acts of smart arseness, that this sounds like my crutch is going to be 'safe' to board with.

Demands for disclosure
Moving right along to the more knotty problem of my lack of disclosure of what my illness is: he informs me it will just not do as they will need to determine whether I am medically fit to fly. This irrespective of me telling him I do not need any assistance on the aircraft. In actual fact, I have mentioned at the very start of the call what the 'problem' is but it appears this didn't register with him and I am not about to state it again as a matter of principle. I explain that it is quite confronting to have such details demanded of me when they have not been required in the past when I have flown with this airline or with others.

Him: I've gone out of my way to be helpful and you are being difficult.
I hang up uncertain if I will be allowed to fly next week or if I will be able to have assistance at any point.

IIIIIIIII I - but I am so infuriated and frustrated by this disempowering process. This is just garbage. When I or anyone requests a special meal for dietary requirements there is no expectation of having to disclose medical conditions. Why when requesting a wheelchair is there? And why now?

Afterwards, I went to the Emirates website and had a look for any info about medical disclosure for people requesting wheelchair/buggy assistance. All I could find was one form under the Health & Travel section. It lists the conditions which people DO need to declare before being allowed to travel. They relate largely to people who can not sit up, have contagious diseases, who require a companion on the plane, who require oxygen and a couple of other serious and restricted situations that it imine does not fall under.

In fact on Emirates 'Medical Information for Fitness to Travel or Special Assistance' form it explicitly states:

Physical Disabilities: There is no need for this form if you simply require a wheelchair as far as the aircraft door; the travel agent can indicate this on the reservation if you wish. Note: Civil Aviation Rules require all passengers to be able to use the aircraft seat with the seatback in the upright position.

While on the 'special needs' page there is no mention of having to declare why you might be using a mobility assistive device. And I fail to see why there would be any reason to know.

Social disability at its best. At least if he could give a clear reason why the situation is so different to my previous air travel and why there is any need for me to specifically disclose. If I was just taking my walking stick I would not have rung and they would not have demanded disclosure.

Here endeth the rant... for now... stay tuned after next week and whether I am allowed on the plane.

Will plan on flying Qantas next time, where the staff have always gone out of their way to offer help with no invasion of privacy. Hrmph.

(And for the rather contrasting flights actual lowdown)

sassy shoe sussing

2011-08-25T21:39:00.003+10:00

Seems there not be many fashion iconoclasts out there preaching to the wobbly teetering converted on how to succeed in that Holy Grail search for stylin foot wear when too high, too flat, too kitten heeled, too not held in at the back ... too wobbly teetering generally are front and centre considerations At All Times.

So lervin the choice help courtesy of the gorgeous and feisty Hong Kong Fashion Geek. While they are regular excellent tantalising style mavens on the inappropriate side of shoe wear, turns out they turn a dab hand at a spot of appropriate shoe shopping too. And thanks to these daze of online retail therapy we can all reap the benefits of their advice from far flung funky town Honkers.

Check out their Toms recommendations and especially the glitter ones over at Toms . (Hmm I notice they go sans apostrophe: that means they even have 'ms' in their name!??!) As if this wasn't enough, Toms thoughtfully include pics of their shoes in action. The shoes may not immediately prepossess quite as well as say an If Shoes Could Kill number ahemmm does:

inappropriate shoe shopping courtesy the OTT If Shoes Could Kill

....but helpfully they also include some spesh shots of their sassy shoes in action accessorising evening dresses and I believe I even spotted a wedding dress in the glitter section.

The feelgood doesn't stop there: an integral part of their philosophy is for every pair of shoes they sell they buy a pair for a child without any.

Yay. Happy daze.

Glittery Toms

I gotta brand new pair a roller skates, you gotta brand new pair of ...genes

2011-08-15T18:16:00.006+10:00

A couple of months ago now, I got to attend the MS Advocates national conference in Canberra. It was interesting and involving for lots of reasons ... not least for one of the pep talks at the final night's dinner by Jeremy Wright, MSRA exec director. He spoke about the exciting developments occurring in MS research land. The one he was most excited about was the study now just published in Nature and currently getting quite a bit of mainstream media coverage, about the links between MS and 57 specific genes.

Of course, there were already a few genes being incriminated but now there is a much more contextualised picture emerging, not least, he explained thanks to researchers from all over the world sharing and collaborating across many diverse studies that are going on. This gene research he explained was a prime example of the benefits of that expertise coming together and cross fertilising.

This morning I happened to have the radio on our national broadcaster's ABC Classic while one of my all-time favourite and ever-so engaging interviewers, Margaret Throsby spent an hour (she always spends an hour with her guests) with the leader of the Australian and New Zealand part of the international study: Professor Graeme Stewart. They talked about ms in the context of what we definitely know now compared to 20 years ago and quite a bit about what this new published research means in relation to genes, ms and managing multiple sclerosis (and auto-immune illness to some extent too) - along with his expectation that this is far from the end of the story and that there are still more genes that will join the gang.

Professor Stewart as one of the researchers on the gene research, already has a long history of researching into MS and is the director of the Institute for Immunology and Allergy Research at the Westmead Millenium Institute.

If you have a chance, highly recommended listening. I think the podcasts are usually left up for at least a couple of weeks online.

Thanks Aunty ABC.

cherry picking for equal opportunity: effective from today for Victorians

2011-08-03T11:49:00.000+10:00

via the always fab and pithy Anne Taintor

Good news from the Victorian Equal Opportunity and Human Rights Commission - from the press release:

The Equal Opportunity Act 2010 comes into effect in Victoria today. The Act cherry-picks the best elements of discrimination law in Australia and overseas to provide Victorians with the best protections available.
While the objectives of the Act in Victoria remain unchanged – the progressive realisation of substantive equality and the identification and elimination of systemic discrimination – the changes to the Act do reflect just how far we have come in Victoria in terms of building equality law. It marks an evolution, not a revolution in tackling systemic discrimination.
The new Act aims to strengthen discrimination laws in Victoria by changing some key definitions, creating new responsibilities for the Commission and strengthening the Commission’s role in helping government, business and the community to identify and eliminate discrimination.
The most important features of the new Act are:
Introducing a positive duty to eliminate discrimination, which obliges organisations covered by the law to take proactive, reasonable and proportionate measures to eliminate discrimination, sexual harassment and victimisation
Introducing a duty to provide reasonable adjustments for people with disabilities in employment, education and provision of goods and services
Providing an extended definition of disability.
The Commission will continue to offer a streamlined dispute resolution service which will provide quick, informal, flexible and free assistance to resolve claims of discrimination brought to the Commission.
The 2010 Act provides us with a matrix of tools to deal with systemic discrimination and a framework which enables us to work with organisations to help eliminate systemic discrimination, as well as the responsibility to inform the community about what this means.

roids and rollercoaster rides

2011-07-30T11:20:00.001+10:00

Luna Park Melbourne via Wikipedia

So sometimes the drugs don't work, often it's hard to tell if they are working or not, sometimes having them not work starts to seem preferable - and just occasionally the drugs work in unexpectedly productive ways. Over at the thought provoking Ramp Up, Dave Maney is a man sharing a bit of his journey now that it's taken him down a roids road:

MRI = You + Tube
I was expecting the MRI to be the length of a show-ride. When the magnets were on my head the machine made a beeping sound, much like scanning items at the check-out. Nine beeps. Nine items or less. Hello Express Lane! But no, on it went.
DJ MRI plays all sorts of different clunks and beats. At one stage I thought the machine was saying my name: Dave-Dave-Dave-Dave-Dave-Dave-Dave-Dave.
The clunk turns into that nightclub moment when a bad song comes on. I couldn't get off the dance floor and go to the bar for a G&T.

His entertaining take on the jargon of ms diagnosis reads suspiciously to yours truly like that of a man on the roids. I've not encountered Mr Maney's work before so apol's if I am waaaay out of line to suggest such a thing but his riffing word associations in that rapid fire 100 mile a minute trippery DO rather stir up warm inner glows of daze passed while on, and recovering from, prednislone drip feeds.

His words triggered a spot of affectionate reminiscing for one of my more fertile(?!) prednis trips where I conjured up a fantabulous re-interpretation of the Book of Genesis, morphing the story of creation into a tale of hermaphrodites, eventually tieing it all to the invention of country music... it rat-ta-tatted itself out as a spoken word kinda thing mostly with no chance of reeling myself in even when I well and truly was registering the look of panic in the eyes of my 'captive' audience...

Ahh happy daze! I certainly had a good (drug induced) time... When you've been forced to travel in the slow lane, a dabble on a rollercoaster ride can be quite entertaining, ay? Getting off the ride a tad less prepossessing, dammit.

Friday fabs: inappropriate shoe shopping

2011-07-29T12:20:00.000+10:00

he hee via the tres cool lusting at HongKong Fashion Geek

Apparently on sale to boot - now only $300+ ...thinking they really need to come with a matching cane - I mean it's not like you wouldn't stay s/trapped in for a spot of wobbly teetering, is it now?

Not your colour? Never fear, they think of everything when it comes to Suno x Loeffler Randall: the yellow animal printesque ones are on sale too. Phew!

captive, if not captivated

supercalafrad congrat's to the Kilimanjaro MS and PD adventurers

2011-07-21T00:08:00.002+10:00

who descended off the mountain today (assume that also means getting through all that mud at the bottom and scree at the top)

check out those ms-ers and pd-ers (??) who have been dabbling in a spot of Empowerment Through Adventure with Lori Schneider on Kilimanjaro over the past week or via their final blog update and pics.

Gaga ms wannabe ambassador Part II

2011-07-15T15:43:00.002+10:00

haa so yet more evidence for my proposal just a mere few daze ago that The Gaga has some mean reds ms envy goin' on. In fact, I noticed while reading about her invitation-only concerts in Sydney that she'd bypassed on any stick/cane wardrobe accessorising and instead went the whole kebab with a shiny spiffy wheelchair to complement her mermaid outfit (or was the mermaid outfit to complement the wheelchair?) .... (Alas no mention of inappropriate shoes. I guess they would've spoilt the sunglassed-up mermaid illusion??)

The Gaga in action (pic via Stuff.co.nz)

What next? Perhaps a Tank Girl inspired number perfectly accessorised with a Tank Chair?? ... Or I know, what about one of Honda's unimaginatively titled Personal Mobility Vehicles? They seem, like they could do with some szju szjuzing attention. Still a little too nerd skywalker skool to make the cross into the zeigeist as yet...

Honda's dorky PMV (Personal Mobility Vehicle)

Perhaps the prototype lean mean green Italian H-ergo would be more the style for some a ga gaaa complimentary attention...

the prototype ergnomically designed and Italian H-ergo

In dem mean times, the lovely Stella over at Ramp Up has commented on the highly dubious cynical media beat up that we should all be OUTRAGED, yes, that's RIOT, OUTRAGED, about Gaga's choice of gear.

Hmm come to that, why is the press letting Harry Potter fans off the hook for wearing spectacles to premieres when I for one remain highly suspicious that most of them don't even have vision problems??... So many things to be OUTRAGED about thesadaze, hey.

'News' of the world eat yr heart out. Go The Gaga.

that tightrope walk pick me up

2011-07-13T17:38:00.011+10:00

fab 'tightrope' walking with ms-friendly shoes and lyrics to boot ...

I've often thought of dat dem ol ms walk, you know the one, sure you do, as akin to walking a tightrope all the time as someone, more often than not, bounces said tightrope up and down ...

Whether you're high or low
You gotta tip on the tightrope

See I'm not walkin' on it
Or tryin' to run around it
This ain't no acrobatics
You either follow or you lead, yeah
I'm talkin' bout you,
I'll keep on blaming the machine, yeah
I'm talkin' bout it,
T-t-t-talkin' bout it
I can't complain about it
I gotta keep my balance

Some people talk about ya
Like they know all about ya
When you get down they doubt ya
And when you dip it on the scene
Yeah they talkin' bout it
Cause they can't dip on the scene

Whether you're high or low
Tip on the tightrope

Definite ms lyrics...

So probably not so surprising then that this jaunty finger-tappn (if toes not available) little tightrope gem by the spunky Janelle Monae happened to come my way last weekend and has been stuck in my head ever since ... been feelin the need to send it on back out to other pockets of the world (unfortunately, embedding is disabled but you can click through with ease). There's even an OTT pill tray and mysterious santorium-for-yr-own-good-type location. Fab fun bustin some slippery tightrope moves indeed...

janelle monae portrai: do note footwear

Do note the rather fab ms-friendly shoes. Apparently custom made by George Esquivel who does a rather spesh line in spesh ms-friendly footwear incidently - and OMG some just beautiful leather...

Esquivel 'Monica' stylin

Go'ONnnnn go have a peek at walkin on a tightrope...

practise for ms pre-diagnosis...

2011-07-12T18:22:00.004+10:00

So I know not everyone is lucky enough to score 'balance' as one of the front and centre features of their ms but it is definitely up there in my MS 'Fancy That' Top Three.

Recently, from among my collection of Shoes I No Longer Wear But Can See No Good Reason To Part With, these little gems re-surfaced.

precarious pogo practise

Precariously, the weight is disproportionately distributed to the bottom sections in the springs leaving the ankles light and wobbly completely unsupported by a bit of flimsy 70s disco rama :P. Vintage wobbly teetering, if ever there was.

don't try this at home...

2011-06-24T11:46:00.001+10:00

Lady Gaga ... wannabe wobbly teetering ambassador??

via if shoes could kill

In fact, she has a long history of wannabe wobbly teetering particularly while conspiring with that Prince of Crimes Against Womanity, Alexander Mcqueen:

2010 Grammys - spiky wand things help counterbalance, who knew?

if only she'd had a gaga crutch to hand it all coulda been sooooo different

Forget sides of meat dresses, someone needs to tell her: if she wants to set the world a gaga her next trend setting step has gotta be to start sporting a wardrobe of OTT Gaga crutches and walking canes...

become a bank robber to get med help in the USA?

2011-06-19T10:12:00.004+10:00

Until last week Verone had never been in trouble with the law.
Now he hopes to be booked as a felon and held in prison where he can be treated for several physical afflictions.
Medical challenges
Verone worked for Coca-Cola for 17 years. He prided himself on keeping his nose to the grindstone. Don’t make enemies. Sell the product. Make your deliveries and stick to your schedule.
When his career as a cola delivery man ended some three years ago, Verone was knocked out of his comfort zone.
He hopped back in the saddle driving a truck. But that employment didn’t have near the longevity, and Verone found himself jobless.
He lived off of savings and sought a part-time job.
...
Then he noticed a protrusion on his chest.
Strapped for cash, Verone looked into filing for disability. He applied for early Social Security.
The only thing Verone qualified for was food stamps.

...

“The pain was beyond the tolerance that I could accept,” he said. “I kind of hit a brick wall with everything.”
Last resort
A couple of months ago Verone started weighing his options.
He considered turning to a homeless shelter and seeking medical help through charitable organizations.
Then he had another idea: commit a crime and get set up with a place to stay, food and doctors.
He started planning.
As his bank account depleted and the day of execution got closer, Verone sold and donated his furniture. He paid his last month’s rent and gave his notice.
He moved into the Hampton Inn for the last couple of days. Then on June 9 he followed his typical morning routine of getting ready for the day.
...

He handed the teller a note demanding one dollar, and medical attention.
“I didn’t have any fears,” said Verone. “I told the teller that I would sit over here and wait for police.”

Full story in the Gaston Gazette (via Big Think)

where did the night go?

2011-06-14T23:00:00.002+10:00

I was going to update on the recent visit to the neuro - my appointment, a couple of weeks ago now, was actually to sus out a new neuro ... I dunno why I got my expectations up. Because I am so demoralised by it, it'll take a bit more re-drafting to step it up to something that can be posted that is beyond a chronic whinge, haa ...

anyhow, in the mean times some other tardiness: a belated tribute to the wonderful poet Gil Scott Heron, who sadly died Friday 27 May 2011. Where did ... indeed?

cluey doers or rueing cures?

2011-06-02T22:50:00.008+10:00

Something Stella mentioned a few weeks ago, gave me one of those eye opening blindspot viewing moments, suddenly realising just how much the MS community is encouraged from all sorts of quarters of society to obsess on A Cure. It was ever so refreshing to hear someone talk about their disability as incidental to the way they live, and not something they were striving to get away from or were shamed by.

It's taken me a long time to peg why I treat and think of my diabetes so differently to my ms. I've never been concerned about The Cure or even A Cure for my diabetes, such a thing seemed largely irrelevant to my day to day. I've had it since I was six - it's just something I live with. Somehow ms was never framed in this way - and there is not one single reason why ... hmm still a work in progress. Even before I had my ms diagnosis, I had often thought myself lucky to have gotten my diabetes so young. The kids I knew diagnosed in their teens seemed to have far more grief with it, ditto those diagnosed with Type II diabetes later in life. It's not the only factor but I think it's significance and bearing on identity is little recognised, hmm.

I've said it before, I'll say it again: Stellaaaaaaa for PM:

...Walking, and the associated benefits, was clearly very important to Rob Summers.
But what about those of us for whom being ambulant is not important? Those of us for whom there aren't enough benefits to warrant all that work.
What about those of us who do not have time to sit through 170 sessions of physiotherapy?
What about those of us who would rather be living our lives than waiting to be fixed?
The reporting of the Rob Summers story sends a dangerous message; that disability is a problem and a cure is the solution.
It's not a new message. We've heard it over and over again from the media, from a largely non-disabled medical profession, from scientists who develop prenatal tests for genetic conditions with a view to eliminating them....

Full article over at the ABC's Ramp Up

(Lurkers, as always any thoughts you'd care to share - most welcome :P )

songs for neuro appts...

2011-05-27T17:17:00.005+10:00

another Nina prayer on the way to the neuro appt (if you'll, haaa, neatly 'sidestep' the 'baby' and 'love you' terms of endearment) :...

.... and after:

Like Woody Allen says: if only neediness and begging were attractive qualities, sighhh...

aware? a week in 10 days

2011-05-25T13:45:00.001+10:00

Fave from Anne Taintor

Sooooo apparently it's MS Day today (25 May). Here in Aus, the MS Society today are publicising (that is, sent emails out) that it is 'MS Week'; declaring, without the faintest whiff of irony, that it runs from today until 5 June.

Sure the world of the MS candidate certainly involves a stopping-to-smell-the-roses-am-I-toppling-over go-slow kinda mode, but blithely labelling 10 days as 'a week' bugs the editor me, bugs the daughter of two teachers me, bugs the english literature grad me, bugs the high school maths grad ... bugs, for that matter, the primary school maths me, definitely bugs the ms me: in short bugs me no end.

I'd include a link except that it was emailed to me from the MS Society without the faintest hint that one might exist somewhere out there in the ether...

Sure sounds like a looooong week to me.

things afoot one year on from wobbly camino-ing

2011-05-20T13:29:00.007+10:00

arrival at Santiago de Compestela cathedral this time last year

Quixotic even for those tilting at windmills...

So it's one year since I completed 100km of the Santiago de Compostela Camino - time flies, wobbles even, hey. One of the major trickeries since has been knowing how well I felt after three weeks of walking - and only walking - six or so hours every day while contending with that being an impossible scenario to instigate on an ongoing basis - alas without it: seeing, feeling, knowing my gait, walking, energy ... blah de blah blah have slipped back from those improvements that walking extensively every day brought about.

on the Way courtesy the talented Z! (more of his evocative camino pics to be had)

The other trickery it creates is, of course What To Do To Mark The Occasion On One's Birthday This Year. One of my reasons for going to Spain was crippling birthday angst. I dread that/this time of year and so decided to do something about it: distract myself in the weeks beforehand just getting to my birthday dinner in Santiago :)

So that went pretty much to plan (twas early even) - what I didn't think about was how that would up the anti for the following year's inevitable event.

I did celebrate with a Nanageddon afternoon tea (ladies bring a plate, everyone's a lady) do a couple of years ago and well, blow me down, if it hasn't turned out I might just have been a tad too early with that too:

you invited who??

hmmm, bless?

a few of my favourite things...

2011-05-11T11:21:00.000+10:00

S Sherriff untitled original

In a minute there is time

for decisions and revisions which a minute will reverse.

TS Eliot's Love Song of J Alfred Prufrock, Leonard Cohen's poetry, WH Auden's too: there's a theme going on here about words.

Christopher Hitchens writes another powerful piece about those losses that: like health itself, the loss of such a thing can’t be imagined until it occurs.

His musing on cancer's impact as he loses his voice, are words that deftly expose those layers between The Well and The Unwell:

Like so many of life’s varieties of experience, the novelty of a diagnosis of malignant cancer has a tendency to wear off. The thing begins to pall, even to become banal.

Surely there is an exquisite word for articulate communication in one medium about losing the ability to articulate in another medium...read the full article.

nina therapy ...

2011-05-10T17:48:00.002+10:00

AND I might add: just how fab is that do??

'but you can walk a block, right?'

2011-05-07T12:18:00.003+10:00

ooh Katja, I love it too (indeed, her rather fab gimp 'tude for that matter):

...You keep walking for a few more weeks. Or a month. Or a year. Or for decades. But your walking is not a smooth, confident stride in which you strike your heel to the ground and lift off with your toes. It’s marred with frightful balance and pain issues. Every step is hesitant and carefully placed. Often, your arms do most of your walking, grasping onto canes, crutches, doorways and walls. You can walk. It’s told to you as if it is the most terrific thing on the face of the planet. Walking is better than world peace. It’s better than sunshine and rainbows and leprechauns. It’s better than winning the lottery.

thanks gimp 'tude via brokenclay

cool crutch review lowdown

2011-04-08T13:45:00.005+10:00

da green Cool Crutch arrives

Okay so my green Cool Crutch arrived a couple of weeks ago and I've now had some time to try it out under a few different conditions.

The good: No doubt, about it, it is distinctly quieter than my clunker bog grey numbers. And distinctly smarter accessorising-wise than my bog ugly numbers.

Ruefully however some up close and personal gripes:
1) Height adjustment:
I have to say, this was a bit of a disappointment for yours truly. Turns out the mechanism to adjust the crutch is not really so different to the click in click out method on the grey crutches, it's just the aesthetic look that is different rather than the mechanism.

Once the clip is off it is easy to adjust but I did find I had some trouble thanks to my lack of dexterity with getting the clip off in the first place.

clip for adjusting height

clip off and holes height must be adjusted within

The bigger disappointment was discovering that the heights it can be adjusted to are much the same as on the bog uglies, that is, there are only certain points that it can be locked into. If you need it between two points then you either have to go slightly too high or slightly too low. Maybe I should have realised this - but I had thought I it would be adjustable to any height and this is not the case. It's only with handling them in person that this became evident to me. See pics above.

2)The cuffs:

Ditto learning about cuffs once they are to hand.

First to rewind on some general terminology that I must confess to having paid scant attention to until I have learnt the importance of albeit through trial and error: full cuff vs half cuff.
Crutches will generally be described as full cuff or half cuff.
Half cuff:
If you have balance issues (among other), a half cuff is really annoying. I learnt this the hard way with my Janis crutch. The problem is, whenever you let go eg a hundred times in the day to reach for your purse or whatever, the crutch is no longer attached to you and will quick smart head for the ground.

The (very annoying) Janis half cuff crutch

Full cuff:
In contrast, because the full cuff clasps around yr arm, when you let go of the hand grip it still stays upright. See pic. While this is A Good Thing, there is actually quite a lot of variable available in how the full cuff does this.
In the case of the Cool Crutches it has this double sort of cuff (full cuff outer with half cuff inner) - see pic (sorry pic not fantastic).

With a full cuff the crutch stays attached when let go of hand grip, note on this Cool Crutch: half cuff underneath

The trickery is that while the cuff stays attached, it actually gets in the way and cuts into my arm in a quite unpleasant way that no amount of adjusting solves because it is to do with the angles and the lower half cuff dropped below my elbow getting in the way. See pics (although a little dodgy as I tried to be both model and photographer, hope they give some idea :P )

by contrast: the bog ugly full cuff (no underneath half cuff getting in the way)

All three from L-R: Janis (half cuff), bog ugly (full), Cool (full w/ inner half)

3) Packaging: Okay so not the most diabolical thing but it was in an inordinate amount of packaging in heavy cardboard with industrial staples that certainly contributed to it costing a small fortune to have it posted from UK to Aus. (The Janis which I also had posted was sturdily bubble wrapped and then wrapped in a heavy packing paper and was much cheaper to have posted.) Thankfully the thoughtful postal assistant offered to open and discard the package for me when I went to collect, cluey enough to suspect that someone wobbly teetering in front of her with a cane was not likely to find lugging an overly large awkward box of ease.

So overall have to say while better looking and quieter than the bog uglies, the quest continues.... looking forward to checking out the Vilgo, which a friend has managed to find a stockist in Oz for. More details, I hope, to follow soon. And also hope to try out Smart Crutches in the near future. HMR in Moorabbin (in Melbourne's outer south) are stockists (and also stockists for the rather spiffy Trustcare rollators apparently - although a year since I first heard about them, still awaiting the outdoor version to arrive in this country).

Sighhhh

daring and audacious

2011-04-04T19:10:00.005+10:00

Dave landing in Cobar NSW in 2010

I posted awhiles back about daring and audacious friend, Dave; his charity he set up, On a Wing and a Chair, to break down assumptions about what people with disabilities can and can't do; AND his plans to fly solo around Australia - hmm seems he can't help himself: he's an over achiever, who happens to have quadraplegia.

Turns out flying all the way around Australia involves a lot of planning (and, ahmm, $$$) so he is still about a year off the major project.

However, in the buildup to that today he set off for a three-week 'mini' practice run to central Australia. He set out this morning from Tooradin, Victoria and has just arrived in an unusually green Murray Bridge, South Australia.

Flight path for Dave's 'mini' practise solo flight

It will be/is a truly amazing trip - not least because, thanks to la niňa and the record deluge of floods and cyclones across much of Australia this past summer, central Australia and its usually empty Lake Eyre is brimming with water, birdlife and greenery.

Dave is blogging his adventures - hopefully plenty of pics too. Worth dropping by and having a squiz for so many reasons.

Yay Dave.

Friday foolery: the 'ultimate pisshead'?

2011-03-11T16:42:00.010+11:00

I hate and loathe the below YouTube clip**: one of those viral pass on clips that has been doing the rounds for some time now with over 3 million views. I know, I know I just should have 'walked' away so to speak. Instead I made the mistake of reading some of the comments. Schadenfreude at its nasty best as is also reflected in the sheer number of people that have passed it on.

The lowdown
For those that don't want to go there (not a bad idea), let me give a brief synopsis. Some person in his (the sexist part of me can't help but assume a 'he', I have no basis for this except thine own prejudices) car spotted this guy trying to walk up a hill. The guy being filmed (clearly without his permission or knowledge) battles to walk straight, indeed falls over at a couple of points and despite repeated efforts is constantly foiled by errant communication going on between his brain and his legs.

The withering assumptions
The assumption is that the guy being laughed at must be - can only be - incredibly drunk or high on drugs. There does not appear to be any solid basis for this. The person filming hides the camera at one point so the guy being filmed does not see the camera, inspiring no confidence whatsoever that the person filming knows why the the guy is walking the way he is.

The wobbly teetering
Sure, I'm being more than a little sensitive in light of my own wonky, wobbly walking that often times means despite intentions, I do not find myself walking in a straight line. Continually re-orientating, flailing about, tipping over, pausing, resting, and various other such permutations and then attempting all over again to override the malfunction and so on and so forth has I admit, rapidly worn out many of my good humoured buttons. (Credit to the guy in the clip who appears much more tolerant of putting up with such frustration.) I also know of others with specific neuro conditions that mean they can only walk to the left (or to the right). The end result something that looks like this too.

Wot sorta funnee bone to pick?
So even though I can rationalise that behaviours (mine and those of commenters on the clip) are all part of human frailty, intolerance and can see why others are tempted to smirk, it makes no difference my emotions are overwhelmingly resentment, frustration and anger at those that would secretly film someone having difficulty walking and then encourage others to snigger along with them.

To me this epitomises the double standard in attitudes in much of our Western societies: the gap between what right-on non-discriminatory compassionate human beings most people like to think of themselves as being while simultaneously being the exact thoughtless opposite, funny that.

** aarghhhh - and that by posting it I am in some sense perpetuating it as well

MS and some F words

2011-03-08T11:05:00.001+11:00

http://horacek.com.au/

Judy Horacek is one of my fave cartoonists (woman with a present, woman with altitude, I could go on...!) - well, not just me that thinks that, she is in fact one of Australia's best and best known cartoonists (with a successful career in an industry that career counsellors tend not to suggest school students pursue).

This little gem that I stumbled across (while over at the Wheeler Centre website) particularly snagged my attention though, cause from an MS-centric point of view it just seemed to nail the whole nuttery of the journey with ms (or a chronic illness) on board.

Hope you enjoy it as much as I do.

Many thanks to Judy for permission to reproduce on this wee wobbly teetering blog. (Copyright remains, of course, with Judy Horacek.)

Happy F' International Women's Day!

Simply challenged

2011-03-05T19:33:00.003+11:00

morsel of the Simpson Desert

One of my all time fave organisations, Youngcare is running its 'Simpson Desert Challenge' again in June of this year.

This lifted more or less from Youngcare's website:

Youngcare was established in 2005 following the impressive story of Shevaune Conry's battle to find relevant and dignified care. [Shevaune has ms.] Currently more than 6,500 young Australians (under the age of 65) with full-time care needs are living in aged care simply because there are few alternatives.

The Simpson Desert challenge is a 12-day trek in, yes you guessed it, central Australia's Simpson Desert. It raises - and will raise - valuable funds that are needed to build and create supportive environments for those with high care needs for Youngcare.

There are 25 trekkers currently in training for the June event; each has committed to raising $35,000 - each!!

Check out the profiles on the trekkers and how much they have raised so far - and of course, the option to add your support: hereeeeeeeeeeeeeeeeeee

... And here to read about the first fab' apartments that they have built in Brisbane.

What a whole lot of amazing people Youngcare are.

They epitmise that wonderful Margaret Mead quote:

Never doubt that a small group of thoughtful, committed citizens can change the world.

Indeed, it is the only thing that ever has.

crutch 'hub'

2011-02-21T11:20:00.007+11:00

so ah, a little surprised to learn from blogger that a search for 'p'rnhub' could get anyone to my wobbly post on some stylin crutches! Let's just say the blogger 'stats' page hints more often than not that it is more than a tad dubious in its methods of compilation...

in an effort to marry the fantasy that 'p'rn hub' and 'crutches' searches do have something in common, here's some more hotted up crutches potential:

Another spunky UK company, Chicaid has a large range of stylin multi coloured choices for the wardrobe - run by a woman who has ms and who also doesn't believe here-have-some-depressing-bog-ugly-crutches should be the status quo:

Vilgo Ellipses from ChicAid in the UK

She also recognises that other inherent design flaw of crutches (and canes): - as soon as you try to lean them on anything they promptly clatter to the ground. To quote from the company:

The second colour doesn't only serve an aesthetic purpose; the band at the top of the crutch is made of a non-slip material, enabling the crutch to be rested against a table or similar object. The handle is shaped in such a way that the crutch can be safely rested against a wall using the coloured triangle at the back of the handle.

Unfortunately, there is again that problem that the shipping is as much, if not more, than the product to get them o/s. 80 pound to ship them to Aus does seem a tad excessive, even with the Aus$ doing good things against the pound of late.

And rummaging over at Fettermans in the US, I came across something called 'crutch skins'. A more affordable $35 for a pair of skins (alas not sure on postage) and not sure if it ain't just a roll of contact polyvinyl (like the school books used to get covered in). But the pic of the leopard skin hotted up number does make quite a statement compared to bog uglies, yes? (Unfortunately, the website is a little confusing when it comes to ordering or querying and when I have emailed the company for info about posting o/s there has been no reply.)

the US's Fetterman crutch skins

Fetterman's also have a rather spiffy telescoping crutch in shiny metallic for a couple of hundred dollars. Over in the UK, ChicAid have some coloured foldup crutches ranging in price from around 50 pound for a half cuff to 160 or so for a full cuff (which does seem a strange discrepancy in price between the two). There are more than 16 colours to choose from - alas the sample pic's are minute and do not show the whole crutch, which makes gauging what you are choosing somewhat tricky.

Fetterman's also extend their repertoire to hotting up yr crutches including carry bags, ice tips and more ... Having said that Ebay is worth a wander past as it often throws up some interesting stuff in the accessories domain (alas not in the coloured domain), including bottle/drink holders and holders for crutches/canes on walkers and chairs. A drink holder for wheelchairs less likely to be found for unknown reasons...

In the mean times, with the dearth of manufacturing here in Oz here's my bit for craftivism: am still working on my prototype knitted 'crutch ~~socks~~ cosy' - if only there were another word than the somewhat dubious sounding 'crutch'...

my wip for spiffing up bog ugly crutches

yours truly's prototype wip: hm early daze

OMG: cool crutches

2011-02-18T15:53:00.002+11:00

Not just good news, make that supercalarad feel good news!

More than a little bit excited to have discovered (thanks bruv) a fab UK business that has taken the baton and is running with it when it comes to a giant fat hex on bog ugly grey crutches. How have I not found them til now??

The company is called Cool Crutches. Thing is it's not just the colour they have paid attention to, they are aware that making that zombie clunking noise is a less than desirable way to get around too and have vamoosed that out of their gear as well.

And the clincher - they are affordable. While more expensive than the ugly hospital issue bog standard (at around 40 pound for one and 85 pounds for a pair) you get an improved product and with out it costing, well, an additional arm and leg (if you'll excuse the bad pun). Cause there are Tom Fetterman's at the unappealingly named Disabled Services
in the US but both the shipping and the product are substantially pricier. (Admittedly part of the reason the shipping can be cheaper from UK for me is that I have a sister coming from there to Oz next month :D Otherwise shipping is an additional 30 pounds. Shipping to North America varies from $10 to $20.

What a pleasure and change to look at a walking assistance accessory and the biggest trickery is which colour to choose.

More lowdown when I actually have one to hand...

cool crutches specs here

And for actual crutch in the hand.

things to do when you aint got enough to do but can't do much

2011-01-26T15:30:00.008+11:00

Image: Chris Piascik via Meet me at mikes

One of the things that gets my goat (yes, a forte of mine, hey) is the frustration of stop-start and TomCruiseUpsideDownMissionImpossible-go-slow that is my modus operandi these daze. Itself a potential world of social disability, given many environs operate on a black/white can/can't good/evil dichotomy: where the rules are either you can or your can't, no correspondence shall be entered into. The notion that some of us might be able to sometimes, and then all too quickly not, or that maybe we can, but not at the speed that is considered the norm are what present as obstacles if I'm feeling pessimistic about it, or knotty problems, should I be in a hijacked-by-Nike(TM)-slogan-frame of mind.

Anyhow because that boggy path all too often can lead to a quagmire of glumness eg squirming only takes you deeper (see Bear Grylls: 'I'm going to feel a little bit stupid ...'), here's some places for when feeling stuck out on the bogs... that often lead to other nooks and crannies and that lay out no dictums on what is that wacky idea called 'normal':

Saving the world - cause we all know 'a stitch in time ...':
World Food Programme donates 10 grains of rice every time you successfully answer a qu. about yr fave subject: english, art, maths or geography, spanish, italian ...

subversive craftivism

urban knitting ditto

am working on a cover for my bog ugly crutches myself...

adopt an endangered word at Save the Words

help out for the collective good at Wikipedia

don't ebay: freecycle

slow foodsing

Starting from scratch:
how to start a movement at TED

or start a zine at Sticky Institute

Maestro/a with instructions:
origami

Eric Joisel's amazing origami turtle

radical cross stitching

Welcoming gangs:
meet me at mikes with the wonderful Pip: hurrah

ravelry

A spot of foodsville
veg out

Starting a new career
make a movie without leaving yr computer
(warning: link is to my first botched dabblings)

become a landlord/lady in your own living room

check out your east african djembe drumming potential and here too

look like Mr Hemmingway? you need to check out Ernest Hemmingway comp

Reboots as a writer:
find out which well known writer you write like...

acknowledge writers block

then write your autobiography ... in six words

or try your hand and upload some atrocious poetry

and of course save your next November for novel writing

Alternative ways to wander around (without leaving yr computer)
12 hours in 12 minutes around Melbournia I

characters and spaces stroll around Melbournia II

or go skiing at Big White, Kelowna, Canada

voyeuristic snowboarding ... in Florence December last year: ahh YouTube.

Broaden the conversational horizon when the boringtons come to visit:
20 untranslatable words

learn spanish

And pauses for thoughts:
Kate Grenville on why writing and writers matter when the world needs saving

famous wordsmiths' day jobs at Lapham's Quarterly

map of the world's countries by population

Mr Waits on never letting those weeds get higher than the garden, always keep a sapphire in your mind...

What else?

plundered from 826Valencia (home of Karl)

sad sad song

2011-01-21T23:21:00.000+11:00

shivers

mm M Ward

rare sighting

2011-01-16T14:31:00.008+11:00

How intriguing is this pic that has appeared at the UK's Guardian under a heading, " 'Gallery rage' mars the Tate's record-breaking Gauguin show":

Intrigued: Rex/Ray Tang pic used for Gauguin exhibition whinge over at the UK's Sunday Observer

Britain's Tate gallery has had a blockbuster Gauguin exhibition running the last few months, wrapping up this Sunday (today so to speak) and which by the media's accounts has been a victim of its own success. Over crowding has meant viewing the paintings also means venturing into a seething den of resentful 'gallery rage'. 'Posh mums with buggies' get a bit of a hammering. NO mention of people with rollators. One guy mentions his wife uses a 'stick' so she chose not to come when she heard about the crowds. I dunno, a stick sounds like it might have been just the thing - to poke a few people out of the way if nothing else (has come in handy at quite a few concerts, ahh how easy it is to digress)...

So, like I said, noone mentions rollators (or other bulky walking aids) - and yet, the above intriguing pic accompanies the article and was appearng on the main webpage. Initially it caught my attention, wondering whether the photographer had contrived to get someone to bend over just so and with the silhouettes in small scale, I didn't realise the two people in the middle were actually two people and a rollator, thinking it was just one person bobbing down, albeit a tad weirdly. Only when I went in for a closer look did I observe the bloke at the front, so still left wondering about the person behind him (and what the girl on the right has in her hand for that matter). But with a wondering admiration for that guy at the front's stoic-looking effort/expression ... did he really just happen to be passing and the photographer seized the opportunity?? Or, just as curious, was he asked to wander past just so?

Can't help but think that the real story remains embedded and enigmatically captured in the pic rather than in the article's written words on whinging, hey?

willing your way or delusional optimism?

2011-01-12T13:13:00.006+11:00

Goya: The Sleep of Reason Produces Monsters

Jessa Crispin over at the Smart Set (and of Book Slut fame) is one of my fave online writers. Around the most recent Winter Solstice (she's in Germany) she mused on the notion of 'control' and 'free will'.

She's not focussed on illness but the ideas she raises resonate with me on the nitty gritty of that ms-er dilemma: what helps? And how can you even know if it's helping for sure? Where lies 'delusional optimism' and where control via our free will?

.... we don’t have alchemy, we have regimented scientific study, which is way less hopeful. There is a study quoted in Richard Holton’s philosophical work Willing, Wanting, Waiting regarding our beliefs about how much control we have over our world.

In 1979, researchers strapped some people down in front of a button and a light. They were asked to see if they could control how frequently the light came on by pressing the button. The frequency, of course, was random. But people sat there pressing that button, trying to turn on the light. And when the light came on frequently — around 75 percent of the time — everyone thought it was due to their accomplishment. They were pleased, and they felt they had control. When the light was scarce, though — only flickering on one-quarter of the time — they could see that no matter how much they pressed that button, no matter how hard they held it down with their thumbs, they were not the ones controlling the light. The delusional participants, by the way, felt optimistic and powerful after the study. The others? Probably useless.

Optimism is often mentioned as a necessary requirement for success — the delusion of authority somehow brings about authority. But what about those with the darkened lights who saw how random illumination can be? Their delusion would have to be more willful.

We all have years when the light just won’t come on, no matter how long we sit there pounding that button, long after the realization that it’s not even wired to the light and all we’re doing is bruising our hand.

...
Even if it leads to the same result, maybe it’s better to the be the person who delusionally starts hacking at the tree with an axe, rather than the one who sees the futility of such action and sits on the tree to mope.

We always root for the heroine to follow her heart and kiss the penniless suitor, knowing full well she’ll live a more comfortable life with the stiff widower who does not love her. We love the willful and the courageous, even when they’re charging towards their doom. It’s less fun, probably, to be the willful who suddenly realizes that god doesn’t always love the fool, that sometimes the fool steps off the edge of that cliff and is impaled on a tree branch below.

So she was not talking to chronic illness and finding a path living with it, but I think the ideas she raises here are core to trying and finding ways to manage our health.

In ms land in particular, it is a world of hedging bets with personal beliefs and gods: for some one thing works, for some another, for others again a combo and for still others nothing really definitively can be said to help.

I contrast managing my diabetes with ~~managing~~ trying to manage my ms. For my diabetes, there is no doubt about it, the insulin makes all the difference. Diet and exercise help but if I did not take my insulin injections every day I would be kaput finito mort all too quickly. If I had not started on insulin injections as a child, there is no way that I would be typing these words three decades later. It makes all the difference for me.

In contrast I can say no such thing with my ms. Over the past seven or eight years (I'm not even certain how long I am talking about), I have for varying periods been on Avonex, LDN, Copaxone and now Tysabri. I went on one of George Jelinek's retreats and have followed a Jelinek/Swank-ish diet along with exercise and monitor my Vit d levels for several years now. I have regular acupuncture and physio.

But are, and have any, all or none, of these things been a help and helping?

On good days, 'of course' I think, they are making all the difference and if I just try harder, do more, I can improve further. On bad days it seems nothing can help and it all seems overwhelming - I'm put in mind of a sieve, where the water is being poured in, which then of course gushes straight out, you can pour more water in and faster but if you can't plaster up the sieve no amount of water is going to solve the problem.

I know people who have had one episode and have taken an interferon ever since and have no symptoms. I know people who do and have done nothing at all and have had no symptoms for more than 20 years. I know others who are zealots to the Jelinek diet and recommendations and are stable. And still others who have expended so much hard earned and energy into all of the above, CCSVI and more, all to no avail or for minimal improvements that are dwarfed by other problems that are not helped. And then those in the middle who just can't tell if what they are trying is helping or not. Hedging our bets.

So not to say that the delusional optimism approach to trying out possibilities is not without its own merits, it's just that pharma, media and much of the Zeitgeist would sell us a different tale of what we 'should' be, 'could' be controlling when control is a far less certain and capricious notion. Willing, wanting, waiting indeed.

Holton's Willing, Wanting, Waiting

off topic: saturday in st kilda

2011-01-10T23:51:00.005+11:00

hmm, sentimental even

....

I ~~want~~ went to see the sun go down from St Kilda esplanade
Where the beach needs reconstruction, where the palm trees have it hard
I'd give you all of Sydney harbour (all that land, all that water)
For that one sweet promenade
P Kelly

the New Year shoe front

2011-01-01T10:44:00.004+11:00

Front by Ágota Molnár

Soooo veryily excited to start the brand new year with a big shout out to the gorgeous and talented Ágota Molnár. Ágota's fabbo piece 'Front' is the star attraction up there above Yoshitomo Nara's 'Princess of Snooze'. Regretfully, blogspot has me a little hamstrung when it comes to trying to caption it for appropriate attribution- my apol's to Ms Molnár.

The pic used in the top left hand corner has morphed over the months and years but somehow when I put Front up there I couldn't find anything more tempting to rotate on to. Now, I realise Ágota did not have wobbly teetering ms-ers in mind when she composed the spunky piece but I love the additional layer of meaning it is now infused with for me.

I saw Agota's piece at the Persuasive Dissent Salon a couple of years ago at the Counihan Gallery in Brunswick. It was by far the strongest piece being exhibited and I was quite smitten with it. One of my very first posts was about it with a call out if anyone knew if AM had a webpage or knew of links to her other work. I have to confess, I hadn't done a wander around cyber land of recent to see if I could find her, so wasn't I super chuffed to hear from the artist herself a couple of weeks ago and a couple of years since the post. Yes, the artist herself. Ahh the wonders of cyber land, hey?? (ahhh, perhaps there even be hope yet for my zegunruhe cuppa coffee in Denmark....)

AND turns out there are other works in the series - cause I had never thought about it, but of course, there is the other shoe:

Front 2 by the talented Ágota Molnár

And more spunky accessorising:

Come hell or an underwire? also by Ágota Molnár

Here's the link to Saatchi online that profiles lots of her other amazing and thought-provoking pieces: highly recommended click through.

So this post is a muchos muchos gracias shoutout to the gorgeous Ágota Molnár for so generously letting me display her work here on this wee wobbly teetering blog. AND must also just make mention of a veryily chuffed me at the snailmail box a couple of Chrissy weeks ago as I opened a mysterious (the envelope itself a beautiful work, almost too aesthetically pleasing to open - certainly to be opened with care) and there it was: a maxi postcard of Front: how excited was I?

Hm can I count finding a frame for it so it can go on the wall as a new year resolution?

Happy, happy New Year indeed, all. Hope your new years are filled with similar thought-provoking, thrilling and talented moments. Yay.

Cranky? You have scurvy!

2010-12-30T12:42:00.002+11:00

From the World of Karl

'Karl never kneels, Karl never prays'

Love it! Good for those feeling crappy, good for those feeling perky: enjoy

Cranky? You have scurvy!
(can't download vid, click to open new tab and you'll be able to see it in Quicktime make sure the sounds up too...)
It's from the too kool for skool gang over at 826 Valencia

'how to' walk ... on snow .... by a dr no less

2010-12-29T13:50:00.001+11:00

You wish: Man on a wire, Philipe Petit

So just before Christmas and the Jack Frost descent in the UK, the London Guardian had this little gem, on how to walk on snow. It included such insights as:

- wear sturdy shoes
- walk slowly
- concentrate
- do not carry heavy bags
- do not walk with your hands in your pockets

Wow, think of the years of study, research, clinics, analysis, experience and patients' stories and trials that must have been drawn on for this to be commissioned... and this doctor seems under the misguided assumption that these 'guidelines' are only for when snow is involved...

Particularly enjoy that it includes 'how to fall over' - something that has bugged me for a long time: if only I knew the best way to fall. I was thinking this just last week as I slowly sailed, teetered, willshewontshe'd, head, hand or knee first? to the bathroom floor: how can I meet a Cirque de Soleil performer or stunt performer that can give me the inside dirt?? (I do a lot of is-she-isnt-she wobbly teetering before hitting the ground, hence while time to ponder, time to set myself vertical apparently not an option ... alas no hints on this part of the prospectus). While according to the good dr all you need to do is 'relax' and grab a nearby person. Oh well, isn't that a yuletide relief?

what's not to love about a snow angel?

ramping it up

2010-12-06T17:00:00.009+11:00

One of my fave nostalgic images from childhood: the ABC test pattern*!

The ABC (Australia's public broadcaster) has launched a new initiative called 'Ramp up'. It highlights stories, vid's, opinion, news and features from across the ABC's many sites on living with disability. Links take you back to where the story has appeared in its original context.

It was launched a couple of day ago to coincide with International Day of People with Disabilities.

The opinion tab has some inviting stories that touch on my pet topic: social disability. There's lots of fuel and food for thought. I've only checked out a smattering so far but pithy articles such as 'Are you defined by what you can't do?' by Todd Winther and 'The Real Me' by Carla Findlay to name but a mere two.

Gritty welcome editorial blog from its editor Stella Young that nails the knotty disability diabolicalness (my term) of the arbitrary 'Us' and 'Them' construct that too often rears its pesky head:

I was at an International Day of People with a Disability BBQ, where I was sure I didn't belong. It was fine for other disabled people. They could get together all in one place and celebrate this day I'd only just heard of and meant nothing to me if they wanted to, but I wanted no part in it. ... At the time, she was my only friend who also used a wheelchair. Her genetic condition was the same as mine, so I didn't think of her as being like the people at that BBQ. She was like me. We were girls in wheelchairs, yes. But we just lived normal lives, like normal people. She had a normal job. I went to a normal high school. We were just like everyone else. Everyone else except those people at that BBQ.

Yay ABC, yay Stella and her team.

*PS oops, by happy coincidence have just learnt that I am being dreadfully parochial assuming it is/was only the ABC's test pattern - rather than widely used tv test pattern, ha haa

everybody knows ... only people in wheelchairs are 'The Disabled'

2010-11-23T22:01:00.012+11:00

When you've fallen on the highway
and you're lying in the rain,
and they ask you how you're doing
of course you'll say you can't complain --
If you're squeezed for information,
that's when you've got to play it dumb:
You just say you're out there waiting
for the miracle, for the miracle to come.

So-ah it's been a curious past few days having some inyerface learning about the different varieties of what is considered 'disabled' - or perhaps what is considered 'not disabled enough' - and how keeping up appearances is so very much in the eye of the beholder - hm especially if the beholder is a security guard.

It's curious to notice the different treatment and responses from others - friends and strangers alike - that is directly related to what mobility equipment I am or am not using. And I know others have far more shocking stories about the differences in societal attitudes they face depending on whether they are with wheelchair and scooter.

For me, if I know I will hardly have to stand I pack one of my foldup canes, if I know there will be standing around-type small talk I take one of my crutches ... and if I am going walking in Spain I pack a rollator and a crutch :o ... so on and so forth.

The Overall Hierarchy of Completely Arbitrary Empathy Scale unfortunately appears to travel something like this:

1. Wheelchair (haven't fine tuned enough to split between electric and manual - whaddaya reckon?)
2. Walker/Rollator
3. Crutch (apparently okay to ask questions when this is spotted)
4. Stick/Cane (questions avoided)
5. Scooter (diabolical rock bottom for unsolicited death stares and worse)

The outright rudeness and nastiness that scooter users can encounter is an ongoing story of horror to me as eye-widening anecdotes continue to be relayed to me.

Hallelujah for me, this weekend I had the sublime pleasure of attending a Leonard Cohen concert at Hanging Rock (we do a good line in Rocks here in Oz).

Hm, outdoors and outta town = much trickery with the enthusiasm-sapping bundle of non-negotiable considerations such as:

Carrying All the Provisions For the Full Spectrum of Day and Night Weather Conditions
Making It From the Parking to Any Sort of Proximity With The Stage
Getting to Portaloos Over Grassy Uneven Surfaces
Standing In Queues For Any Amount of Time Under The Rip In The Ozone Shield
Navigating Sprawled Out People On Picnic Blankets and
Circumnavigation Of The Rather Self-absorbed Albeit Generally Joyfully Inebriated At Any Given Moment
Intention Tremor The More I Ponder About Any of the Above

(Once upon another time, of course, I didn't even know said above could be considerations.) However, as this was verily likely my only chance to hear the great charmer crooning to me (and a mere 11,999 others): 'I'm your man' while a-roving, By the light of the moon the slow motion considerations needed to be patchworked in by hook or by crook ... or by crutch.

The crystal ball gazing at weather forecasts in the week of rain beforehand had been filled with trepidation. Our tickets' not-so-small print warned us that the gig was to go ahead rain or shine. While most of us focussed on getting Big Hughie to hold off on the watery part, there were a couple of us just as nervous about the 'shine' end of the options. Thesea daze I am usually in outside avoidance mode for anything above 22C - and definitely in favour of a spot of brisk cloud cover.

So quite frankly, these conditions: crowds, uneven surfaces, waiting around, heat and disappearing light in the evening part of the performance had me at what was my most 'disabled' self-conscious so to speak.

If It Be Your Will

Perched on a camping chair, after 20 minutes in the sun I'd lost feeling down one leg and in both hands, and balancing ie sitting on the camping chair was starting to seem like an advanced yoga asana that would not be got out of gracefully. With the piercing sun, liquid refreshment was important but the consequential prospect of having to stand, navigate the crowd and get to the toilets was one that was dizzyingly outtareach.

Luckily, thanks to said Rock, the sun became shaded in a more civilised fashion from early evening and brought a slow twilight, which I figured was as good as it was going to get for a teeter to the loos - given darkness and wind chill factor later on were about to create a whole other set of challenges. Having studied the map provided beforehand, I knew there were two lots of disabled toilets (and pleb loos too). One to the front of where we were sitting and the others further back up the uneven grassy hill. As is my tendency these daze I headed for the nearest ones that also had a clearer, less congested path.

Somewhat like 'a drunk in a midnight choir', I reached the large flag that proclaimed 'Toilets' and 'Bar', unfortunately realising too late that there was a barricade in the way to the toilets (interestingly enough no such problem was evident for the bar). A security worker stood the other side of the barricade, about a metre from him a gap between the barricade and one of the temp buildings beside the loos that a person with a crutch could have navigated with a little help and goodwill.

Turns out the disabled toilets (and additional toilets) at this end were located in the area that was reserved for those with seats (ie those who had paid upwards of $300, unlike us pleb's in the outer who had handed over a mere single hundred plus parking...). Unfortunately, thanks to the poor signing and misleading map this was not apparent until I was a few metres away.

My friend caught up to me a few minutes later as she had lingered to 'discuss' with the security bloke his limited outlook while I engaged in my slo mo wobble back up the hill, past where my camp seat was and onward to the other further away portaloos. She informed me he had told her that, 'Anyhow, there's nothing even the matter with her'.

Not disabled enough, hey... it's been a while since someone said that about me. I decided best I take it as a compliment. After all thems the dilemmas hey: Hard to say what is more demoralising being described as 'The Disabled' (well intentioned as my friend no doubt was) or being told that yr not disabled enough, or even flat out that you are not disabled (not so well intentioned as our security enforcer so evidently was).

I made it back to our spot just in time to hear Leonard finish his first set:

Everybody knows, everybody knows
That's how it goes
Everybody knows