Ramping It Up: Children w disabilities, opinions, books

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.

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.

Somebody Else's Dark Days

It's almost 3 pm and I have so much to do my head should be spinning. The usual - everything from paperwork to taxes to sorting out drawers and dealing with boxes of archival research; tidying up domestic detritus and cooking; catching up with old friends and nurturing new ones; tracking down a novel or two; applying for funding and filing life's administration. The usual, in other words. So I shouldn't be having an indulgent chat to a computer screen. So, knowing that I have about half an hour's grace before urgency kicks in once again, I thought I'd check emails, flick into news sites, check some other media sites, and see what's what in various blogs.

And then I read this: another parent's dark dark days of despair, as he deals with his daughter's seizures and epilepsy and huge amounts of medication. The blog is called Looky daddy, and I don't read it all the time. He manages to be funny and real and thoughtful, and only occasionally too folksy for me. I like his style, and the range of stuff he brings up. But today? A whole list and litany of "I'm fucking sick of it". Sick of having to monitor his daughter; sick of the medication; sick of the side effects. All of this is heartbreaking, really, because it's the relentlessness of it that he manages to get across in a few hundred words. But the thing that really got me? He didn't want to allow the space for comments . . . and I fear it's because he doesn't want to deal with other people's judgment of him, other people's righteousness, other people telling him he really needs to get over it. In which case being reminded that it's an unforgivingly self-righteous and judgmental world out there is too too awful. Unless, of course, he just doesn't want to deal with other people telling him it'll be ok, and he should just buck up, and there are worse things, and look at how lucky/ happy/ resilient he really is. And in fact he demonstrates regularly that he and his whole extended network, and his daughter, are extraoardinarily resilient. But ah but oh the rawness that he revealed, just by adding that caveat at the end.

So I wonder when and if and how I'll get to that stage with my girl? Will I get sick of always having to pick her up and place her, and her never being able to sit or stand or lean or be anywhere unaided? Will I be worn down by the extra effort to communicate, by the rounds of therapy, by the MRIs that don't show anything? By the heavy equipment and the endless straps and buckles and chest straps and headrests? By having to explain at every turn what's going on with her? by having to mediate social interactions and work for inclusion? By having to look out and plan ahead for access and ramps and width of pavements and doorways?

Or will it just be ok, and be what we do?

Maybe she will talk; maybe she will one day be able to sit up unaided. I know it's too much to think she'll walk.

And I don't feel Looky Daddy's despair and frustration and sheer tiredness: but is it just a matter of time? My girl is 2 years old. His daughter is eight. Then again, he has to battle with damaging, draining, emotional "events", where she has seizures and they have to run off to the hospital. Maybe it's the intensity of the moment - the moment of danger, that flashes up (who said that? some cultural theorist or other) and reveals so much to us - maybe that's what does it for him?

And I think it no accident that he was worn down by an article in a magazine, by somebody else's statistics, presented so baldly. They can really kick you in the teeth, sometimes, with the way they present a "truth" to the world, from mortality of children to the mortality of relationships. Hey, I work in the media so I know there aren't (necessarily) overly elaborate conspiracies; I know research and editorial decision making and interviews can be (should be) complex. But sometimes - sheesh - you need another article on "disability" or (in his case) "epilepsy" like you need a hole in the head. Reductive and expansive at the same time: your experience fits into this model; and then at the same time you read a whole range of other peoples' experiences and expand your world to fit theirs in. To draw connections. To wonder if it'll happen to you. So for me, it's all the bloody awful articles on "carers" or (as I've said six too many times already) "angelic carers" that really piss me off. Or the throw away line about the child with the disability, about the institution, about the elderly parents in despair, about the vulnerability of the child, about the use of the word "retard" as slang, that gets me.

Or the thought of someone else out there, at their desk, on the other side of the world, writing his innermost thoughts for strangers. I wonder just how much he leaves out?

Becoming a Professional Pest

Oh dear, here I go, becoming just the sort of pain in the arse bore I never thought I'd become. Oh, OK, on the bossy opinionated front, maybe it's not that surprising. So far today I have:

- Written a submission to the Therapy Place about why they might change their Board and fix their website

- Written a letter the Childcare Centre about access

- Contacted the Muscular Dystrophy Association to see what support I can get for Miz M -- even though she doesn't have MD. It seems that with an unknown NeuroMuscular Disorder she may be eligible

- Written to the local council about their Park Proposal and the fact my girl can't use any of their new playground stuff (in a shockingly passive aggressive style where I suggested I was sure sure sure they didn't mean it to come across like this and so -- with finger twirlingin a dimple -- where's the real info about inclusion that I must have missed)

- And copied above to the local State member, along with an extra whinge or two.

Sigh.

Something like this:

The Board Thing:

Dear Board Bigwig at the Therapy Place,

For various logistical reasons I was unable to attend the recent Parent Liaison Meetings but, being keen to communicate various thoughts about the organisation, decided to write to you instead.

My two-year-old daughter Morgaine has been a client of The Therapy Place for over a year now, under the “Oh Look We have a Problem” Program (no, they don’t really call it that). My partner Abe and I are extremely happy with the care and therapy she receives, and have also benefited from a range of programs offered to us. I would like to take the opportunity to formally commend the work of physiotherapist X, OT Y, and speech pathologist Z; and to recognise the benefit of courses like the Art Therapy workshop run by Q and J.

Having said that, I also appreciate the opportunity to raise some structural concerns with you: about transparency, involvement, charity models and (in a more functional way) about the role of the website.

In brief:

Representation on the Board:

- Parent/ Carer Representative on Board: Given the number of young clients at The Therapy Place, and that any decisions have a direct impact on them and their carers, I was surprised to find that there is no place for a parent or carer representative on the Board. In the interests of inclusion, feedback, transparency, accountability and – in a very positive sense – to draw upon the experiences and skills of parents, can they have a formal role on the board? Some process would need to be instituted so that parents themselves feel properly and fairly represented (such as an election by parents), which may require changes to the procedures under which the board is constituted.

In addition, given parent/ carer responsibilities, their involvement may need to be constituted differently to that of other Board members: perhaps rotating one year terms?,

I believe these voices need to be heard, and can be heard in a way that is fair, representative and professional. It need not be about an individual parent wielding too much power, nor pushing the rights of their child over others. When done well, it allows for a range of voices and perspectives, for a different type of consultation, and could enrich the organisation.

In addition, it would give weight to what I believe is a prevailing approach to the care of children with disabilities in organisations such as The Therapy Place: that is, fully rounded Family-Centred Practice.

- Person with Disability on the Board: Having made the case for a parent/ carer to be on the board, I have to confess to considerable disquiet about adding another person speaking “for” those with disabilities, given the push over the last few decades to ensure that those with disabilities are able to speak for themselves. Unless I have misread the biographies of members of the board, it seems there is no person with a disability on the board. This surprises me. Surely there are people in the community who could be approached, or even those who have now “graduated” from The Therapy Place themselves?

The website and its audience

- On a conceptual level: It’s not entirely clear who the current The Therapy Place website is for. Is it for clients of the service? Or is it for potential donors to the service? Much of the information presumes the “audience” for the website is a lovely donor, who will help the passive “victims” of a disability. This feeds into a very old model of charity and disability that constitutes the people with disabilities themselves as passive recipients. This, I believe, does a great disservice to the work The Therapy Place actually does: teams of dedicated, intelligent therapists and other providers, working with children and others with disabilities to improve their lives, allow them a place in the world, treat them with dignity and allow them to be active. So why imply otherwise?

- On a practical level: The The Therapy Place website could easily play a more active role in providing information for clients, via intelligently selected links to (eg) government and NGO services available; highly regarded medical and other information sites; support and community groups; disability awareness and activist sites; blogs and other social networking sites that specifically address issues of disability and childhood etc. No doubt members of staff, as well as parents and children themselves, have already found and selected the very best of these sites – but any newcomer is left to flounder, test, search, or never find what they’re looking for. Why reinvent the wheel?

There is an awful lot of information for and about disability available online. Some of it is good; some of it is terrible; and if you’re new to the area, dealing with the life-changing situation of having a child with a disability, it can be confounding. Not only that, the internet is both local, statewide, national and truly international. There will be resources available at all levels. So from Disability Services Queensland to the Inclusion Support Agency; Federal Services to the woman in Austin Texas who writes a blog about her daughter whose experience is just like the experience of the child in the next room, why not better collect and coordinate that information? Presenting and arranging links is not the same as endorsing them, and many organisations do this well.

Finally, I note that the flyer sent out to all of us about the Parent Liaison Meetings says that “interested parents/ carers will be able to meet with the Board during the year”. When and how will this happen, and can it be organised with plenty of lead time, given the logistical challenges faced by so many of us.

Many thanks for the opportunity to approach you: please do not hesitate to contact me if you would like me to clarify any of these thoughts.

 

- Hmmm, must do more work on the whole family centred practice thing, because there's lots of stuff out there, although ti does require evaluation, not to mention finding some of the more recent material

- The Childcare Thingo: no bigger issues there, so not worth copying.

- The Park Thing: Oh yes, let's.

Dear councillor,

I am a New Farm resident with a two year old daughter and a five month old son. I’m a regular user of New Farm Park and, indeed, of all the riverside walkways in the area.

I was very interested to see the proposals for the revamped children’s playground area in NF Park, and very much hope I haven’t left it too late to give feedback on it. The new proposal looks very exciting and creative, with lovely opportunities for imaginative play.

But I must be missing something – and I trust it’s merely the case that the rather schematic style of plan doesn’t provide the full detail. Because as it stands, my daughter, with her disability and being in a mobility device, is almost entirely excluded from the space. Even path access to the new play area, or provision of soft surfaces, don’t seem to be included, making transitions from a pram, mobility device, or wheelchair, rather difficult.

My daughter is only two (and is unlikely to ever walk, crawl, or sit unaided), but already I’ve had to reconcile myself to the fact that older parks give her no opportunity for play, while newer ones may have one or two devices that can be used (eg in Woolcok Park at Red Hill, there’s a hammock-type swing that allows children who can’t walk to be lain on it, for swinging). Even so, with a revamp at New Farm I’d love to see something that includes her, especially given the number of children in mobility devices that I see using the park. (Although paths that allow for easy walking around the whole park, rather than only the small section near the river, would also increase use of the park. As it is, trying to walk the entire park ends with dangerous traversing along the roads. And no, pushing a mobility device through the grass tends not to work.)

I note that there’s considerable good work already done in this area, setting out the principals of accessible and inclusive park design: eg the ACT has just released draft guidelines, so surely there’s no need to ignore these questions?

http://www.tams.act.gov.au/live/about_our_department/community_engagement/community_engagement_activities_and_events/accessible_and_inclusive_playgrounds_in_the_act_-_draft_strategy

But as I say, it may well be that I’m missing crucial details by looking at the schematic plans as they appear on the website.

Could you let me know?

**** and there we have it. I have officially turned into a single-issue bore. Better make sure I write a letter about someting else asap. ***

On righteousness - and motherhood (or, there's a lot of it about)

I'm about to be self-righteous, indignant and opinionated about the degree of righteousness directed at women. So yes, there're a whole lot of contradictions imbedded in that sentence: too bad!

I met an extremely nice woman last night, who was consumed with anxiety about the way she's been judged and the way she knows she will continue to be judged. She's pregnant with her third child, and for various medical reasons she had to have caesarians with her first two children, and there's a very good chance she'll have to have one again. And although having a caesar is no picnic - pain, recovery, limited movement, a helluva wait to feel normal - she's more worried about the snide asides, the judgment, the commentary, the presumptions, the RIGHTEOUSNESS than she is about the procedure itself.

In the past, it was suggested to her that if she'd been fitter, tried harder, been more committed to natural labour, more in touch with her body, less swayed by the medical establishment, then maybe she could have had a vaginal birth. Now, why is that ok? I'll confess, I'm all for active births and natural labour myself, preferably with little intervention, and without an Obstetrician as God figure hovering. I think midwives are fabulous, and trust them enormously. And maybe all this is an act of self-centred, self-serving defensiveness, as after a good long active labour, full dilation and all the rest, I also had an emergency caesarian. Among other things, M's disability means she has a larger than usual head, and even with the moulding and platest crossing over and all that terribly clever stuff that happens, she was never going to fit through. And the air of scepticism that can be directed back from people committed to an active vaginal birth, is really dispiriting. (But I'll say a hallelujah to the midwives in the Birth Centre I went to where, even with the non-birth centre outcome, were totally fabulous and positive, and were too professional and thoughtful to lay on any guilt and anxiety!)

And Id like to make a case that this sceptical, judgmental, self-righteous schtick is anti-woman, anti-feminist, and indeed part of a refreshed (I won't say it's new: how could I?) mysogyny that sees women being blamed for so many things. And while it may be true that an increased medical model, and tendency to pathologise women, is also part of the problem - then how is it that women are the ones blamed, rather than medical systems or a tendency to treat the uterus and foetus as if it has no social, cultural or even bodily context? (Although to be fair, many anti-caesarian forces are also clear that women themselves should not be blamed.)

Phrases like "too posh to push" are also insulting and simplistic; as are the simplified arguments claiming that more and more women are "choosing" to have caesarians. This is partly an uninterrogated counting of procedures referred to as "elective caesarians". The woman I met last night gets put in that category, even though what we're talking about is a complex set of medical issues, that have affected her and her sisters. But because, after the first emergency caesar, it can be tracked and assessed beforehand, it's put in the "elective" category, and judged as if it's a botox injection. I have another friend with pre-eclampsia, a serious condition, who will have to have a ceasarian. Because it's planned, because her health is being monitored closely, because she may or may not have to spend weeks and weeks in hospital beforehand, she's also in the "elective caesarian" category. And really really really, having major abdominal surgery, plus a brand new little person to deal with, is not an "easy option".

So why the attitudes, the judgment, the righteousness, the thing that made this woman I just met -- intelligent, competent, warm -- be fearful of both her own defensiveness and reactions she might get?

Some of it, I think, is because "The Mother" is public property. She's a political figure, although often an invented one, used by all sides of politics. She was used, in Australia in the nineteenth century, to make claims about nationhood and whiteness and goodness, and her role in nurturing the cradle of the nation as we moved towards Federation; she was used by Labor's Billy Hughes during World War 1 as he tried to garner support for conscription; she was used by his opponents in a protective role as the mother of working class boys who should not be sent off to the trenches. She was used and embodied by politicians like Dame Enid Lyons, who herself had a dozen children, to exemplify work and respectability and the christian ideal. Every century, and every decade, it seems, mothers of all types are reinvented and used, not as people but as political mastheads - barebreasted in the French revolution; with a maidenly coiff in another; and even with the appeal of bloody Peter Costello a few years ago, asking that women produce three children each - one for mum, one for dad, one for the nation.

And of course, the "mother" is also used to judge other women. Single women. Women with partners choosing not to have children. All of this is obvious.

But it does mean that walking down the street, feeding a baby, having a meltdown, wearing the wrong shoes, she's judged. This isn't surprising, on a cultural level. What is surprising, to an idealist like me, is the ways in which other women enter into the fray, and do the work of the mainstream. Breastfeeding? Not breastfeeding? Judge the woman, without any evidence of what's going on. I read an article in teh last six months, from the Australian Breastfeeding Association, about the myths and otherwise of "failute to thrive". A useful piece of research and analysis, or it should have been. Again, here comes my self-serving defensiveness. The author pointed out, in way that was entirely un-thought through, that it's all exaggerated and only in 1-3% of cases did real medical reasons exist that might stop a child from feeding and thriving and beign able to breastfeed. And so, having a child, M, with a disability that means she was seriously skinny at 8 weeks, had ot be supplementary fed, with (yes) some pretty serious medical issues . . . somehow, she's dismissed, marginalised, and not counted by that very phrase. As if that 3 % somehow doesn't count! I was so furious my head nearly exploded ("Calm down," Abe says to me regularly, "Just calm down". And he braces himself every time the mag turns up, and keeps asking whether I really really want to read it.) Marginalising and judging the marginalised, now there's a technique!

One of my favourite anti-righteousness raves, about motherhood and ideology, comes from US writer and commentator Ayelet Waldman, who used to be a regular at Salon.com. I read this years ago (link is below), while still a dedicated singleton, and it resonated with me even then: I'd seen too many friends judged, spoken to by strangers, harrumphed at because they had their baby on a bus at midnight, walking down the street, dressed in the wrong thing, and so on. For Waldman, it's breastfeeding that's the prompt, and her own surprise that she's giving her life story to a complete stranger, and explaining that it really is breast milk in the bottle and so on.

But I wonder, as someone whose intellectual training and an embarrassing no of degrees has been entirely in humanities and qualitative methodology (which most of the time I stand by, completely, as allowing for nuance, context, history and poetry, all at the same time) . . . I wonder whether the problem isn't the numbers. Too often, statistics are misreported and used badly; cited in a way that fits a dodgy argument; and often just straight-out misunderstood. Like the supposed quantifying of "elective" caesarians as equating with "completely trivial and idiotic women who are too posh to push" rather than something more complicated. (Although it seems we also need to be better at collecting the date in any case, a problem that's been identified for a while, as here, for example.) And where would Media Watch be without someone entirely stuffing up a statistic?

But in case all this sounds too too earnest and po-faced, I'd better rush off and get my hair cut and coloured. Bugger the grey, time to deny ageing etc.