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.

So perhaps I need to chill out: Or, things that make me go AAAAAARGGGGHHH!!!

So, pregnancy yoga this morning: v good. A bit hot, and lots of vigorous thigh work, but basically, all good. Whereas on Monday night when I also did a preggo yoga class, I spent the first 10 minutes debating whether to tell the two women next to me to shut the fuck up during the "let's all concentrate on being lovely positive womanly women communing with our baby bellies" meditation thingy. Then gave myself a sharp slap and an internal om, and got properly into the swing of it.

Then this morning, was next to a woman who has "pubic symphesis" - which I had long misheard as "pubic synthesis", partly because I suspect that's what half the world calls it and which, along with phrases like "hair's breath" rather than "hair's breadth" have a certain charm about them - and she was clearly fairly uncomfortable. But the nice thing? She was sailing on through and refusing to complain, told me she was feeling great, being positive, except for hardly sleeping and being deeply uncomfortable, which in her sunny way she was refusing to be fussed by.

Then had a great long phone conversation with Holly, an old friend and a colleague, who's feircely intelligent and shockingly witty. Famous, in fact, for summing people up in a few terrible words that you're destined never ever to forget. Like the man she described as knowing about as much as could be written on the leg of a bird . . . with a crayon; or the other who, really, if his brains were gunpowder it'd barely ruffle his hair. And these are the least rude. So anyway, all good.

And THEN in the spirit of being efficient and organised, having just brought in a huge pile of newly washed new baby clothers from Morgaine's collection, ready for Clancy's appearance in the world (we appear to have 800 tiny white singlets; and lots of brightly coloured unisex things), I decided to make a phonecall or two.

Sigh through gritted teeth.

M has a special bathchair shower chair thing, that was partly subsidised through a government scheme. It's worth about $2000 and we paid about $800. Next, we have a special seat/ pram thingy - which is like a wheelchair before she's old enough to work an electronic wheelchair - and we're getting a bit of that subsidised too. It's worth $10 000 and we're paying half of it.

So I rang the supplier and paid over the phone. Then said that, although we had the invoice for our bit of the payment, I needed a copy of the full quote for it and the bathchair, showing the full price, both for our records and for possible use for insurance etc. I'd actually made this same request about 3 times in the past. Oh no, she said, I don't think we're allowed to do that. I smile sweetly but insert an edge of steel into the phone manner, when pointing out that insurance wouldn't work if we could only show half the price; that the person I spoke to last week had promised to send it to me; and that I was more than happy to speak directly to the manager about all this.

aaaaaaaaaaarrrrrrggggghhhhh.

I loathe these circular, illogical, why-does-this-have-to-be-do-hard crapola conversations!

Still, on the grounds that life is full of interesting things to contemplate, and that my personal frustrations are boring as batshit and there really ought to be wider implications for all of this: last week, when I was first chasing up the invoice for the oh-my-god-5K that we have to pay, the woman on the phone said, "so, are you paying this or is someone else?" So I said, um, "we are". And then as the negotiations went on she checked with me a couple more times (really really? you're paying it?): which made me think -- so, who else could pay for it, what the hell are the options, and how how how do you find out about them?

I know she was talking about being supported by a charity or (ick) a church group; a philahtropist or, I don't know, a sausage sizzle organised by your nearest and dearest. And at this stage, we're lucky, and we can pay it. But how do people do the charity thing, what does it mean to go "cap in hand", and why oh why is it still ok that rather than government or other support structures, it's all about charities, do-gooders, the "deserving cripple" and the "kiddie with the picture in the paper"? (Oh look, a much more thought-through and pissed off argument on this very point, much better than anything I could put together in a hurry on a hot day.) I know I know, and I've said it before, we lost the debate a decade or more ago about service provision and welfare here, as more and more services have been tendered out to NGOs, many of whom are church-based charities. I also know there are a lot of websites out there, where people lay their lives and their privacy and their heart-wrenching stories on the line - because they need to raise money. And I suspect, when M is older, we'll know all the options for raising money for a school to get special equipment, for deciding whether or not it's ok for a tobacco company to sponsor a ramp, and we'll become expert at writing grant applications (hey, I work in the media, it shouldn't be too hard to find a "hook" that'll make 'em laugh and make 'em cry, although hopefully I'll manage to keep my ethics intact!).

I've even already had to pull my head in about a company that makes "special needs equipment" beign part of a religious organisation whose ideology I find highly objectionable. Mind you, it's been remarkably difficult to even prove that they're behind the company. And yet it seems they make the best version of this thing we're going to need, fitting all safety standards etc (I'm not going to advertise for them, however, and we haven't trialled it yet - so no names no packdrill!)

Back to the "cap in hand" question, charity support and so on. I wonder what other people's experience of that has been?

But perhaps, without wanting to sound too too churlish, I should end with a song: the phrase "cap in hand", besides conjuring up visions of Andy Capp, takes me to another misquotation. Instead, I find myself hearing the phrase "hand in glove" . . . and what's not to like about a song that says, "hand in glove/ the sun shines out of our behinds"? Ah, the Smiths. Life in a shared house, in Sydney, and suddenly it's the 80s all over again. Quick, where's my eyeliner? So now I'm singing rather than going "aaaaaaaaarrrrggggghhhhh"!