Ramping It Up: Children w disabilities, opinions, books

If I had to do a Productivity Commission assessment of my life . . .

I'm attempting to be brisk and organised and productive, while still feeling the impact of a medical procedure yesterday that required sedation. A non-glamorous, not at all worrying, spare everyone the details, type medical procedure. Suffice to say I had to fast for days, drink litre after litre of water, and miraculously gained a couple of kilos in the process. Bugger it.

So it's a quiet day of answering emails, sending off requests, trying to con a library into scanning my thesis into TROVE (I've had one of those inquiries from OS about it that's both exhilerating and exhausting, as I'd have to explain why I can't just send him off an article he can use because - well - didn't quite get around to publishing much of it etc etc), chasing up lost super (blah), finding medicare claims, chucking things out (maybe), and discovering - yet again - that disability services stuff crosses state and federal boundaries in annoying ways.

Miz M has a Qld Taxi Subsidy Scheme card, which only involved filling in 82 pages worth of forms and getting supporting documentation from two different places saying no, really, can't sit in a regular chair, yes uses a mobility device, no can't walk at all etc etc. From memory, that was the same week I filled in another set of forms for a "Companion Card", and yet another for a disabled parking permit. All done, all good, all being used. But we're going to Sydney in October, for a week, and will need to use accessible taxis all over the place. Not to mention reinventing the wheel(chair) once again with an airline; making requests about taking the chair to the door (again), getting lovely and positive responses from the "Special Handling" gang (again), while knowing that the people at check-in will be flummoxed, confused, unclear about the process, and we'll have to give her life story all over again while I try to keep my irritation and on-the-verge-of-tears response under control (again) while Abe tells me to stay calm (again).

Doesn't sound cynical, does it?

Anyway, realised that the Taxi Subsidy Scheme is state-based, so I have to put a request (in writing, here we go) for a book of vouchers to use interstate.

No big deal; no wish to whinge excessively; 2 minutes on the phone plus 2 minutes to write an email. (The email to the Special Handling section of the airline takes much longer, as I work out how to be charming but assertive at the same time. Crossing out all my "maybes" and "perhaps" es; replacing them with "we require" and "you will" and "as you know" etc.)

But why, the fuck, don't these systems cross state lines?

OK, it's about funding and jurisdiction and which things are dealt with by the states, which by the Commonwealth. So what it comes down to? Blame Henry Parkes and Alfred Deakin and George Reid and whatsit Griffiths? Blame the constitution and 1901? Who, I'm quite sure, gave not a thought to care of people with disabilities falling between cracks in the health and welfare system . . . although, as they stood around pompously in Melbourne in 1901, Deakin daydreaming about spiritualism and getting back into his cossies down the coast, and George Reid thinking up another bon mot, they may well have known people with disabilities. After all, there was a contingent or two off at the Boer War or in the Sudan. There were epidemics everywhere. There were rats in Sydney; there was polio, there was typhoid, there were children being blinded by measles. Still, they didn't really think the Commonwealth govt would have much to do; they didn't even think it'd have to be a full-time government.

So I'm not sure we can blame the constitution makers and 1901. (Although Bob Katter and George Reid would've enjoyed yelling at each other over free trade, protectionism and tariffs. Sugar and the north. City versus country.)

But hang on, people, we've had over a century to sort some of this stuff out.

The Productivity Commission is dealing with some of it right now. It was the week before the election, when the latest round of submissions into "Disability Care and Support" were due. Life was busy, of course, but I knew I wouldn't forgive myself if I didn't write something. So I wrote about our girl, about that Difficult First Year, about the lack of communication and knowledge between different sectors, about feeling set adrift when community health nurses shrugged their shoulders and said, basically, "we have no idea what to do next". About the need for investment in the communicaiton and knowledge economies. About the need for a National Disability Insurance Scheme. Tried to draw out the implications of our own very limited experience to a wider, systemic, problem. Tried to include personal stories as well as pleas for equality, rights, love, education, access, equipment, fairness. Then just stopped, after a while, because it became rather draining. Wanted to make an impact by telling a personal story then drawing out the implications, but made myself teary every time I reread the damn thing to edit it (still had a really stupid typo in the final version, that made at least one sentence completely nonsensical). Sent it off, on the very last day (of course), exactly one week before the election. Was sitting up here, sending off copies to every politician I could think of (state member, federal member, state minister for disabilities, fed parlt secretary, The Therapy Place, Miz M's school) when I didn't hear my mobile phone ring. New phone, dammit, my ear wasn't attuned. And what do you know, it was Bill Shorten, while he was still Parliamentary Secretary, with a warm and intelligent message. Damn, I wish I'd heard that phone and spoken to him instead. Clever politicing, too, I have to say, so close to an election. Haven't got a response at all from my state member, which still irritates me (what is the point of being a rusted on Labor supporter if they Disappoint You!!!!)

But Oh. My. Gawd. You should see the submissions to the inquiry. There are over 500 up there to look at, but I don't quite have the strength this morning to delve back into them. They can wrench your heart out; and can also make you sit up straighter for the strength of analysis and the power of the stories. for their politics. Some, of course, are less than fascinating. But most, holy shit, batman. There are individual submissions that have been written in a hurry by people with not much time, talking about decades of care for their children. People writing angrily and proudly and stroppily on their own behalf, about their lives and their rights. Organisations talking about what they do and how they do it. People whose stories make you want to weep, for the injustice of inadequate support, money, equipment and for being treated so badly. For lack of resources in rural Australia. For lack of support in the middle of cities. And then there are clever, analytical, proposals from women's organisations taking on the gendered aspects of care. And there are people and organisations whose solutions you can flat-out disagree with.

But the stories the stories. Such a reminder of the power of ordinary lives and experiences. And no, it's not all about tragedy and despair; but it's certainly about a lack of equality and a desparate need for change.

There are 537 submissions right here.

And if those commisisoners decide to look outside the submission, they'll find grist to their changing-the-system mill everywhere they look. They'd find it in Pen's stories who, with aplomb and warmth, finds herself travelling from Canberra to Sydney for her boy; they'd find it in the story of Moo's apparent invisibility, and the anger and vulnerability that exposed. They'd find many things to think about via Miz Lauredhel and the Hoyden's About Town, who will not be silenced thank you very much.

Orientation, North; Blog Carnivals; airports & Museums

It's hot; Morgaine's wheelchair/ mobility device has just been repaired; the plumber has fixed the broken loo; four cartons of thickened water and associated paraphernalie has arrived; my new freestanding punching bag has just been delivered; and Clancy is asleep. It's 11.15 am. There's ragu simmering on the stove, and I have a mental list as long as the meandering pile of crap on the loungeroom floor. Let's see what else I can get done, because hey, it's been a month.

In that time, the latest Feminist Blog Carnival, on disability, care, age, Lesbian Vampire Films and a whole range of related issues has gone up and, as always, stacks of good things to read and much admiration to the woman who put it together. I'm looking forward to having a bit more time and space in my life down the track, so I can host one myself and help share the organisational load, etc, but - well - not right now.

There's also more happening on the proposed National Disability Insurance Scheme, with a Productivity Commission report just announced.

Meanwhile, even though I'm no fan of the whole patriotic fervour associated with the Kokoda Track in PNG, I understood the frustration felt by paralympian Kurt Fearnley - who'd just crawled the Track - when he found that he couldn't use his wheelchair at the airport. Y'see, we just took Morgaine on a plane for the first time, to Cairns, partly to finish our aborted Northern adventure and partly to defiantly decide that we wouldn't be limited by too many ideas of what we couldn't do with her, where we couldn't go and so on. To be fair, we had an OK time of it - but fucking hell, the hoops and barriers and reinventing of the wheel that goes on.

First, you have to deal with the endless gatekeepers, when you try to find out just what the system is for taking mobility aids and needing supportive seating on the plane. And each person has slightly different, inconsistent, info. Won't go into the long boring details, but anyway, finally discovered that you contact the "Special Handling" section of the airline, and give them all the details: size, weight, condition, supporting documents. You check the seating availability, and what you can use. Give height, weight, dimensions of the mobility device. Check with the Civil Aviaiton Safety Authority about what's what. Read all the airline policy. Make many phonecalls, and write long emails. Think you know what's what.

Then arrive at the airport, and no one at the desk knows anything about it. You have to hand it to those lads from Little Britain, it all feels very "computer says no". Still, we did ok. After some fairly firm, but smiling and being LOVELY interactions, we made sure they tagged her chair, and that we took it all the way to the gate. Then, because she can't actually sit in any of the wheelchairs they make available at airports or for transfers on planes, we had to carry her on, struggle with the car seat, balance a wiggling Clancy, and try a bit of om-style deep breathing. Then hope like hell they were able to bring it up to the gate at the other end. And they did and it was fine. Clearly, no matter how well organised, you just have to reinvent the wheel, do the explanations, go through everything, and try to decide how to not piss anybody off . . . each and every bloody time. And I reckon Fearnley has been doing that all his life now, and just got a bit sick of it. Ah, but aren't they the unwritten rules? Be grateful, be charming, be good humoured, don't make a fuss, don't go to the media . . . and know that the next time it could be easy or a nightmare and there's no way at all of knowing.

It's still hot. I'm still feeling the press of all the things I need to do against the back of my neck.

I've bored myself with the travel logistics stuff.

Would rather be talking about the wet, green, strange and beautiful North. The Daintree. The Reef. Cape Tribulation. Atherton Tablelands and Mareeba. And if I knew where I'd put my notebook I'd be better able to do that: from Cook and myths of origins to the way some of these local museums turn you into an instant curator . . . I think I'll need to do all that another time. When it's not so hot.

Treetop walkways and bushwalking with a mobility device

So many allegedly "green" and other critiques of the world - especially about consumerism, authenticity, travel-versus-tourism, footprints on the world, and heaps of other things but I'm not in a list mood - are based on the unencumbered, the able-bodied, the young and the righteous. And hey, I don't like being put on the defensive. But here goes. If I could have an "authentic" experience, off the beaten track, with nature and without pollution, without too much luggage - or baggage - then I would. OK, well, if it involved camping I wouldn't, to be honest. I've never quite seen the point. But work with me on this. So if I could, I might, and if I did, I'd catch the train, and hoist a bag, and carry a bottle of water and a book, and hold hands with my fella, and we'd slather ourselves with sunblock and jump into the ocean without looking back.

Instead, when we head out, there's a carload of stuff. There's back up. There's a heavy-duty mobility device, pretending to be a pram. There's water, for three of us; but there's thickened water for Miz M, so she doesn't aspirate. There's carnitine, for Clancy, in case he decides to go into a metabolic meltdown. And yes, there are mobile phones, all charged up and ready to go.

But we still want to just run onto the sand, dive into the waves, hare off up a path. Like many a parent of toddlers, we can't; but unlike some of the others, we have to assess those paths with a practiced eye. Look at the curve. Contemplate the buried roots. Think about those rocks.

And so, instead, we ended up in the Lamington National Park, at a guesthouse, driving up a winding winding road on the Friday night. Abe, tense and tired and grumpy after a difficult day/ week/ month at work. Me, slightly unprepared and feeling hassled and hussled. Every 100 m or so there's another sign warning of a "blind corner", a single lane - but no warnings about unexpected demands to read maps, to alert to signposts, to beware overhanging cliffs or conversation, falling rocks of comments, and other moments in the front seat. No dramas in the back: two small children in flanelette pyjamas as the weather was strangely cool, and we were heading skywards. So, conversational gambits wound through my head as dangerously as the road, and came out like those wire baskets that stop the side of the road from falling in. One of my brothers-in-law spent a terrible summer filling and making those; a desparate job and days relieved only by drinking too much at the end of them, and talking shit with the instant-friends from the work group (him, not me). So instead, we reverted to silence, while on Radio National a terribly amusing grandson of the bullying, clever, dreadful Waughs spoke about fathers and sons, literary antecendents, and the power of letters in the archive. Funny and inspiring, but the road curves didn't get any easier.

Finally, we arrived, and it was cold. So we cranked up the heat in the room and dehydrated ourselves and baked, tossing and turning under covers imprinted with "regent bowerbirds" with their flashes of orange, while Clancy complained and wiggled and would only settle in our bed, where he threw out wild and indiscriminate little arms, to wack us each in the eye.

The next morning was clear and beautiful. Poor Abe was exhausted, and he and Clancy curled up together, sweetly snoozing as we'd finally made the room comfortable. So Morgaine and I headed off for a guided birdwatching walk, at 6.30, where we met up with a group of mostly-elderly cheerful couples, one funky pair of 40-somethings, and a woman who I thought had woken up in a giant flanny nightie and slipped on a jacket, ugly shoes and a fleece jacket, in what seemed a moment of bravado and confidence, and I was ready to admire her bushwalkery don't-give-a-damn . . . and then I realised later it was just a terribly unflattering skirt. Ooops. So we could mostly walk along the walkways, and see dozens of birds, explained by a dry, knowledgeable, interesting woman. Flashes of colour. Strange sounds - including a "cat bird", that could easily have been rechristened a "strangled cat bird" - and iconic sounds, given context.

Iconic sounds, like the "whip bird", which I've heard so many times, echoing around the bush, but had never seen. Birds that mate for life, and a more confident male came skimming and hopping along the ground, to accept various approved-offerings to take back to his mate. A sound that echoes off cavernous skies and across valleys, implying high branches and grand outlooks, but which instead come from the ground. I've always associated it with bushranger Ben Hall, and the romance of his defiant, anti-state stance, all fed by populist writer Frank Clune, and the TV version which gave me one of my first ever childhood crushes.

Morgaine, I suspect, wasn't thinkign about bushrangers as I pushed her through the bush, but she did seem to enjoy breathing in the air, hearing the trees, and getting ready for an extremely large breakfast.

Later in the day, we went on another boardwalk, up to treetop level in the rainforest . . . and this is one of the few ways she'll ever get to experience the bush. It'll be constrained, rather than wild and unexpected. It has to be wheelchair accessible. It can't easily be off the track, taking another path, following the road less trodden. So many many constraints for my sweet girl, and there's a challenge for parents of a child with a disability: how not to overly constrain, overly manage, hem in? Are those treetop walks a wonderful opportunity, or ridiculously lame?

Still, some of that managing of experiences is just about childhood, not about disability. Communing with nature? Well, how about paying 4 bucks for a metal tray of birdseed, especially selected so as not to damage the natural feed patterns of the Crimson Rosella . . . and then being swooped upon by these gaudy, raucous, beautiful, bright, unlikely looking birds. Clancy was entranced and amused; Morgaine laughed out loud and shook her feet at them; and I thought having these beautiful, raucous, bright (you get the picture) birds walking on my arms and landing on my hair was EEK GET OFF ME!!! GO AWAY! GET YOUR SCALY LITTLE FEET OFF MY BARE SKIN YUK YUK YUK. Apart from that, of course, it was fine . . .

Then on the way home, on the Sunday afternoon, we were able to enjoy winding down the mountain and actually being able to see. While at the bottom, there was a vineyard with a tasting room, and a river with simply gorgeous trees and outlook and a huge homestead, that - apart from being in completely the wrong state - seemed very Ethel Turner, very "Seven Little Australians". I had a surreptitious check under the tree to check that Judy wasn't there, squished, in one of the most memorable moments of melodrama from both literature and tv for me, rivalling my crush on Ben Hall. I always overdid things, as a kid, so as well as reading Seven Little Australians, I searched out the other books that followed in the series, including "House at Misrule" (is that what it was called?) which the librarian sourced from one of the teacher's own bookshelves. One of those ancient books where the pages are crisp, and corners break off it you're not careful. Now, I think that was a helluva effort that woman made for me, a ten year old who wanted to read ALL the books in the series. I can see the library now, a demountable, and a small round woman with dark hair.

From that, though, the idea of "Misrule" has always appealed to me. It appeals to me as a carnivalesque idea, but there's always been a touch of Australiana about it for me: a rambling house, a bunch of kids, some 1890s-style nationalism that proclaimed the Aussie kid as "different", by which she meant "different from" the English. But when you're ten, that "other" is hard to identify, even if you know it's there. And at a pinch, I wonder if I can remember their names, without checking: let's see - Meg, Pip, Judy, Baby, Bunty and the Major. I think I've left one out. None in a wheelchair, of course, because the tree branch that fell on Judy, in the book - and in the TV series when I was about 8, that broke her back, killed her rather than injured her. No space, there, for surviving in a different body. With the tree, she both lost her defiance and kept it forever. Remained an ideal. Occasionally, but not very often, that actor turns up in other roles on TV, and it's always surprising. She must have extricated herself, you think; she walked away after all. Perhaps those legs will walk, after all.