Ramping It Up: Children w disabilities, opinions, books

02/11/2012

Test. Wrote two newbies yesterday and lost them both

Four Months? And a deluge of excuses

Nothing written since October, and this will be a lacklustre return . . . given that work deadlines and anxiety lead to a lack of sleep last night, and there are still half-packed bags for an impending trip to NZ. I've been composing posts and analysis and stories in my head for months now. A lot of it about anxiety and waiting, and the odd experience of being on leave without pay while my lovely wee girl was well.

She's been fine.

But I was preparing for a crisis. I was girding myself for tragedy and pain and grief, and then when it didn't happen, I've had to try to turn it into a celebration. And it was surprising and confronting to realise that I had to self-consciously allow myself to enjoy "the gift" of extra time with her. Holyl shit, do I need a mindfulness perspective.

And then there's all that displaced worry.

Because I am, after all, a duck. Apposite, given the terrible floods and the experience of living in a city awash with water. Awash with stories. Awash with acceptable narratives of heroism and survival, while the half-heard stories of bad behaviour and pettiness get washed away. And so the cartoon duck sails calmly along, while paddling like fuck underwater. Frantic little legs, with no time for defoliation.

So this, my friends, is a bad beginning. No links. No argument. No stories to share. Working on it.

Writing with Boxing Gloves On

Right now I should be standing, left foot forward, weight on the balls of my feet, guard up, in front of my punching bag. Ready to deal with some adrenalin and a raised heartrate - but I've opted to sit here, with adrenalin and a raised heartrate, doing some metaphorical boxing instead. Because I'm feeling anxious, flutter in stomach, emotions behind the eyes: for not particularly good reason. This is extraordinarily hard to admit. I've been getting bouts of anxiety ever since I went on LWOP. Nothing overwhelming, nothing clinical, but enough to not feel like myself, and enough to feel unproductive, immobilised, not engaged, and a bit dithery.

And I've never felt like this before, not really. 

So finally I admitted it to Abe last night, that I'd been feeling a bit anxious, and he briskly and sensibly said, You Need to Do Some Exercise. Get onto your punching bag. And then I admitted that I know I should, but feel anxious about the time it will take, all the things I need to get done, the very small amount of time I have to do things, and so on. And he wasn't being glib. Abe is very thoughtful about anxiety and depression and coping and what you need to do, and exercise - and creativity, pleasure, intelligent responses to problems etc - is part of it.

But I also know that words can land those punches too, sometimes, can allow the sweat to flick off your shoulders and make the mat under your feet slippery with exertion. And sometimes instead of a hsst-jab-jab-cross that's what I need. When time is short. When deadlines beckon. When Things to Do and Am I Wasting this Rare Opportunity looms.

But then I fear being as self-indulgent as an Elizabeth Gilbert, with all her eat-pray-love, meet-play-puke, cliche-food-guru carry on. Add Julia Roberts' toothiness to the mix and it all sounds like a vision of hell.

Because yes yes I know, some would say that a child with a disability means that it should be ok to whinge about your life sometimes, but really . . . is it? My girl is well and healthy at the moment; she ate her banana and yoghurt for breakfast; she's off being entertained by some fabulous people at childcare. Last week, on the other hand, my cousin's wife died, at the age of 48, of mesothelioma. I didn't know her, and my cousin was a presence and memory rather than someone I knew. Older than me, he was the handsome one from a family of close-knit brothers - one went to university; one still lives at home with his mother my aunt, and has no front teeth; another was working on the railways and fell out of a train and was smashed against a pole at the age of 17, and his liver was split, but her survived; and then the Handsome One went to live in Cobar and was a miner. Three daughters, and his wife - who never worked in the mines - got the miner's disease. A dreadful story. Too sad.

And within a few hours, miners in Chile will be brought up that impossible shaft, 700 metres, one at a time, into the light. I read this morning that Isabel Allende is there, along with families of the miners, unpaid clowns, politicians, engineers, the army, and a huge contingent of the world's media. Awaiting miners, some of them illiterate, who have forged a collective agreement about benefiting from their stories together. How they'll survive the experience of blinking into the light is anybody's guess.

These stories make me want to erase my first few paragraphs, as it has already worked. It's like pouring warm honey onto a spiky burnt thing, melting and soothing it. Being reminded I have nothing to fear. It's about words.

I'm also reading Barbara Kingsolver's Lacuna - and the power of words is central to it. Well, of course, it's a book. That's not what I mean, it's part of the plot. Her fictional writer is saved by his words, and he uses them in many different ways. He writes journals and reports; he builds a novel out of Mexico's history and a reflective, leftwing, nationalism. He's funny and secretive, as he describes the pale skin and smooth muscles of the Dutch man he lusts after. He's exuberant when he describes the marketplaces and foods he buys and cooks with. He's occasionally naive as he writes letters to Frida Kahlo, who admonishes and hectors him, and swears like a trooper. Frida Kahlo. In the 80s she was everywhere, but I only had a simplistic feminist notion of who she was. Her powerful, bold, not-really-narcissistic images were so very familiar, but her voice was not. In this novel at least - drawn apparently from her journals, and those of Diego Rivera - she's stroppy and powerful, opinionated and sexy, a force to be reckoned with. And she values words just as she values colour, images, politics, and making everything from her dress to her table to her house, artful. And she wasn't one of the world's whingers, despite the withered leg from polio, hidden under the swish of her skirts; despite the shattered pelvis, the lung diseases, the skin inflammations.

So, girlie, why the hell should you be feeling a little bit blah?

No reason at all, it turns out.

I also listened to an interview this morning with the artist Jutta Feddersen, whose story gives us the "other side" of the second world war narrative. She was a middle class child from an artistic family, in Germany, whose world was destroyed by the war. Camps, Russian soldiers, brutality. And she still looks for and exalts in beauty, partly as a way to deal with loss, and stories, and memories. I know her work, or bits of it, and she uses repetition and large scale installations, uses miniatures and the gigantic, shadows and juxtapositions of feathers, toys, dolls legs, eyes, and woven pieces of steel, to tell her stories. The interview left me feeling a little flayed, but not necessarily in a bad way.

It also reminded me of Rachael Sieffert's The Dark Room, which I also read recently, after avoiding it for a long time - for some reason. Three stories, connected without it being spelt out, about Germany's history and the impact of World War ll. It's also about photography, and writes about it beautifully. Like chess, photography is often overused as a metaphor. But this time, the photography has been used well - the f-stops are there for a reason, the description of red flags with swastika's glowing in a grey square are described so they send a shiver up your spine, as alive as a Leni Riefenstahl image; and the inability of photography to capture some events is also well done. Not to mention that I couldn't put it down, and read it balanced in one hand while doing other things; stayed up late; opted for words over sleep.

And there was Berlin, in part of the book, divided and marked. I've never been there, but not long after finishing the book I was talking to a friend who'd just returned, days before. She has an eye for a thoughtful detail, and for clever analysis, and so she saw the present and the history of the place at the same time. The bumps in the cobblestones, designed to trip you up with stories of the holocaust; the spiral staircase drawing you up and through the politics of the Reichstag; the museums. And the conversation helped me make a (screamingly obvious) connection I'd missed, when drawn in by China Mieville in his remarkable book, The City and The City. This is a noirish crime novel, that's also fantasy, that's also about two intertwined cities, circumscribed by rules of seeing and unseeing, where the two populations can't and won't and shouldn't either see each other or cross over into each other's territory. It's also a story of conspiracies and politics. And while it feels very Eastern European, in the slightly downtrodden feel of the city/ies, surely Berlin is - or was - the archetypal divided city.

China Mieville is one of the most dramatically inventive writers around, I think. He is so so so so very imaginative, in a way that can be surprising, and which also draws you in great detail into other worlds. If more fantasy writing was like this, I'd read more fantasy writing. Sure, some of his earlier books follow that silly fantasy convention of beginning with an obscure chapter that makes no sense at all until you've come to the end of the book, and which need not be there at all, but he's still remarkable. I did read his first book for all the very wrong reasons: fancying the pants off the bloke who recommended it to me (years ago, pre-Abe). But I read The Scar and was astonished.

Mieville's subconscious - or wherever he sources his imaginative worlds, given that he's a political activist as well - resonates with mine. One of his books features giant moths whose wings blur and oscillate with colours and shapes, that drive anyone mad or kills them, who looks directly at them. Unfortunately, that's a feature of my nightmares: insects and flowers that, if you look directly at them, kill you. If I'm very very stressed, I've been known to leap out of bed with a yell when they appear. A-hem. Not at that stage at the moment. 

But one of his other creatures, reminds me of that exposed spikiness that happens when you are outwardly calm and on top of things, but instead have a jagged armour that's ready to jump into place. There's a strange subplot in one of his novels - which will sound overly macho and aggressive, but here goes - in which these intelligent creatures are involved in prize fights, in which they slash their own arms and legs, and their blood spills to form a spiky armour that protects them. Stay with me, there's a motherish metaphor on its way. I imagine them greyish green and fierce.

There are days when I emerge from the world in which I cope well and happily with Morgaine's level of disability, and find I have spouted from similar wounds, leaving similarly spiky jagged armour. At home, we can play and interact and bring out her best. Can put her in her supportive seating and let her reach things. Can take her to childcare where the inclusion support worker manages the interaction with other children, and she's part of it all. See, it's not so hard. See, other children do know how to interact with her. And then I'll take her out for a walk, to the playground, and see once again that she's excluded from most of the park, see other children ask their parents why M is "like that", while never talking to us; see the hammock she should in theory be able to go on completely covered with regular kids having a fabulous time, in a way that excludes her unless I chase them off and do a "disability" speech, which would defeat the purpose; or means I have to wheel her onto the one thing she can use, and have to explain that yes this is a wheelchair and yes this is what it's for. And I think we're calm and happy, and realise instead I've slashed something and spilt spikiness, am interacting in a defensive way, am presenting a brittle armour to the world.

But the knot has now dissolved, so I think it's time to take those damn gloves off. To wipe down the mat.

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.

Writer in Residence at a Hospital

I'm no great fan of Alain de Botton, but when I heard him on the radio reading from his recent work that came from being a writer in residence at an airport, yes I was inspired. It wasn't the writing, so much as the idea. At an airport, of course, he got to see it all: drama, passion, reunions, farewells, lost luggage, bad behaviour, exemplary behaviour, all sorts of cultures and nationalities - and, perhaps, architecture and a space that's sometimes stateless sometimes all about citizenship, sometimes cozy sometimes cold, and frequently defined by ridiculously expensive mediocre coffee. But the thing that got me, was the idea of institutions and writers in residence.

Where else could you have writers in residence, and what would their stories be?

Of course, lost of institutions have already done this. Libraries. Schools. Prisons. Art Galleries. Universities. But imagine what would happen if you kept expanding it. Imagine the skills required: not just to write, but to listen, to elicit, to empathise, and maybe to confront. Writer in residence at a funeral home. Writer in residence at a laundromat. At a hardware store. At one of those dreadful baby shops full of cute furniture and anxious new parents. At a shoeshop. At an aged care facility. At a petrol station and roadhouse in the middle of nowhere.

At a hospital. At a children's hospital.

It's not news that hospitals are full of dramas. ER. All Saints. Scrubs. General Hospital. Grey's Anatomy. But the delicacy of telling the real stories and being a writer whose job it is to gather those stories? How would you do it? And how on earth would you do it ethically? I can imagine the writer sitting for days by a bedside, needing to be part of the action, needing to feel the energy and flows and stories that swirl around. Feeling the anxiety and tears and warmth.

Because, OMG as they say, the stories.

Morgaine has been out of hospital now since 26 July. Not quite two months. And I've been off work on LWOP for most of that time - which seems odd, given that after the crazy six months of endless hospital admissions, she's fine now. For the moment. It's increased my anxiety and guilt in some ways, rather than lessened it, as I feel that I'm waiting for the next crisis. It may happen next week, or it may not happen until next year. Stasis. Limbo. But time to reflect.

Time to remember some of those many many hospital stays - and the people, and their stories. There was one particularly intense ten or twelve day period, when M was admitted under the neurology team, because as well as her usual respiratory distress, she'd had seizures as well. So we were in a different ward. The room wasn't particularly big, but there were six beds, and six recliner-chairs for the parents. All in a row, all right next to each other, with a strange intimacy and a carefully practiced set of rituals around listening and not-listening. We all made an effort to let the others be private, but were also ready to leap in when required. We couldn't help but know each other's stories.

The small boy in the next bed had a terminal cancer and a set of zippered-looking scars all over his head. They were on holidays from interstate, when he suddenly got very sick. The parents were delighted with the care and treatment he received at this hospital, the progress made, but there was an undercurrent between them. The father was utterly dedicated to his son, with an air of zealousness that I suspect we all get when our children have complex health problems and no easy answers. He'd latched onto an alternative food regime that he was convinced of, that meant this child was being fed only protein. Nothing else. The father made up all his food, and the mother was weary and resigned. The doctor's didn't think it was a good idea, and I don't think she did either. And the little boy was offered some toast one day, by one of the wardies, and the poor child was delighted. It was taken off him. Those wardies are the ones you might follow, if you were the writer in residence, as their everyday activities create the connections between people. Emptying the bins, collecting the trays, endlessly mopping the floors and saying hello to the crumpled, stiff necked, parents, and the wide-eyed children.

Across in the next corner was a 15 year old girl who'd had major brain surgery, and was peg fed. Her mother was constantly on call and never seemed able to even take a deep breath on her own. If she walked to the corner to rinse out the attachment for feeding, the girl would start calling out, anxious and demanding, peevish, annoyed. Where were you where were you I can't see you. Both had masses of dark wavy hair, but the girl's was shaved on one side. That woman was doing it tough. One day she called her ex, to explain yet more surgery, another procedure, another in a long list of dramas, and as we all pretended or tried to close our ears, there was clearly a complete meltdown going down on the other end of the phone, of the Why Didn't You tell Me I have a Right to Know. Just calm down, she kept saying, let me tell you, it happened so fast, just calm down. And on and on and on. She was curled in on herself, her and her child, didn't really speak to anyone else, and had a pretective air. She seemed so private I didn't speak to her when we finally left, a week later or however long it was, and then there she was, standing up in the corner, waving, wishing us all the best.

And right in the middle of another night, a thin woman came in from the Intensive Care Unit, with her 9 month old baby connected to more tubes and wires and shunts and ivs than I've ever seen. They had had to lift off the entire top of his skull, and cut open the bones which were fused together, not allowing space for his brain to grow. He had a helmet of bandages that made his head seem huge, and his eyes were black and swollen. She was breastfeeding him, and all he wanted was to be held, to feed, to be given pain relief. Her husband and two sons came down with a horrible flu and couldn't come in to see her, and they were from hundreds of kms away, staying in hospital accommodation. Then, within a day or two, this fragile child sat up, smiled, looked around, was ready to play.

Directly opposite, was a young Samoan girl, only about ten years old but looking older, which meant everyone thought she was able to cope more than she could. Her leg had been broken and reset with pins, and was now encased in a series of metal halos and wires, that meant she had to go through many complicated manouvres to get in and out of bed. To be hoisted into a wheelchair. To try to go to the loo. How do I put my undies on, she said to the nurses? A conversation about sewing and velcro ensued, and whether her nanna could maybe fix that for her. A young and utterly gorgeous mother, with another little baby, in and out by her bedside. Lots of visitors and laughing aunties and grandmothers. Then they all went out one night, and took longer to come back than she expected. Sobbing from her bed. I've never been on my own before, she said. So I called them up on my mobile, to find out where they were and when they'd be back. They thought I was a nurse so there was lots of confusion, and of course we were all best friends after that.

And in the other corner? A young Aboriginal woman with a tiny beautiful baby who was having breathing problems. Her team was by her side - literally her team, a whole group of young women in uniforms, with the Aboriginal flag and an air or protectiveness. Stories of custody and access. Lots of laughing. Conspiratorial intense phonecalls. Someone wasn't going to be let into the bedside.

Everyone offered each other fruit, or leftover sandwiches. Magazines full of mind-numbingly tedious glamourpusses in red dresses and push-up bras. I'm going down to the cafe do you want anything. Keeping track of the many teams of doctors who flitted in and out, never leaving any clear sign that they'd ever been there.

And sleeping in a reclining chair that doesn't quite recline properly, with a foot jammed against the bottom to stop yourself being concertina'd back like a cartoon cat in a booby-trapped house. Cameraderie and strangeness.

Then the boy with the protein was able to go home, and another woman came in. She had the final space, right next to the bin and the front door. There were visitors everywhere, and chaos. My girl was moaning a lot, less than a metre from her child'd bed. She rejected any overtures of friendliness. Her daughter had fallen off a piece of playground equipment and broke her arm - awful, of course, and distressing, but if there's a heirarchy of these things, it didn't really compare to the brain surgeries and terminal illnesses and touch-and-go situation of the rest of the room.

This woman looked around.

But We Are Private Patients, Don't We Get a Private Room?

This is a public hospital, m'dear, said the formidable nurse. In these situations, they're all Formidable. Beds are allocated according to need.

Her body language froze with distaste, and she then spent an entire night listening to my girl moan unhappily (a sure sign she was getting better, but not that much fun for everyone else), with lights flashing in her face from the nurse's station, and with the tap going off and on as everyone paid attention to best handwashing practices. Part of me wanted to laugh - this woman was getting the Public Hospital from Hell experience, just as she expected.

So if I was writer in residence for that ward, that'd be the comic relief.

Anxious

The children are fine; the sun is shining; and I have a knot in the stomach the size of Sweden. Apart from the odd bit of hormonal rage last night and this morning, it's mostly about this damn election. A win by the conservatives, Tony Abbott as PM, fills me with huge anxiety. But I also hate the fact I haven't had a visceral, light on the hill, passionate, ideological, response to anything in the Labor campaign at all -- even as a rusted on Labor voter. Nothing. Nada. Nyet. I want a woman Prime Minister, with brains, without God, with a vision. So give us a damned vision, Julia!

Picture apologies

Sorry for the hopeless sideways pics. I'm usually good with technology, but the dying mobile phone gave me no joy with uploading photos. So this was the half-arsed, couldn't change format, quick version.

Not our chair

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Feet

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Liberty swing. Woosh!

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