Ramping It Up: Children w disabilities, opinions, books

Your Daughter? That's My Worst Nightmare

If only I could write like Hilary Mantel - whose wrenching, angry, memoir Giving Up the Ghost made me laugh out loud, or snort and snuffle into the lounge to the surprise of both Abe and Clancy. Because she's intelligent, because she's a good researcher, because she's articulate, doctors spent a lot of time being surprised by her and, because it's the late 1960s and early 1970s, they pathologise her rigour and turn it into psychosis. One doctor tells her she's conscienscious, with a mind for detail, in a mildly accusatory way. She was studying law, and so goes on to say, "I tried to imagine the other kind of law student, the kind who favoured the broad-brush approach, who took on the law of trusts, for example, with a grand generalist's sweep and dash." Well, it made me laugh.

I also loved this, when being treated appallingly by dickhead lecturers at university, who couldn't see why a woman should be studying law at all: "Some people have forgetten, or never known, why we needed the feminist movement so badly. This was why: so that some talentless prat in a nylon shirt couldn't patronise you, while around you the spotty boys smirked and giggled, trying to worm into his favour . . . It was assumed that marriage was the beginning of a woman's affective life, and the end of her mental life." (pp 160-161) And goes on to describe how, in job interviews, you were grilled about marriage, intentions, when you were going to "start a family", by "some grizzled ringmaster, shifty and semi-embarrassed as he asked a girl half his age to tell him about her sex life and account for her next ovulation." But really, it's  one of the best descriptions of pain and illness and misdiagnosis I've ever read. I had thought that both Joan Didion and Susan Sontag, even David Rieff, talked about illness and hospitals and the medical system well but, really, Mantel takes the cake by describing this ostensibly sweet self who was raging and railing and almost screaming with frustration inside a body that was going out of control. But then again, maybe I only think that because I finished reading it in the last few days, so it has inhabited my imagination.

That, and Colum McCann's Let the Great World Spin - vibrant, clever, convoluted, sad, utterly gripping. In some ways, a novel about grief (I wept through one entire chapter; then was buoyed up the hard edge and street rhythm of the next, which left me surprised at the left-over sniffling); in others it has the euphoric poetry of Philippe Pettit's tightrope walk between the Twin Towers balanced over everything, turning your eyes and the character's eyes up and up. Then some cringeworthy moments of race politics where you can hardly look at the page. Still, it helps to have seen the doco Man on Wire, about that tightrope walk, to give you Pettit's arrogance and his poetic hopes, given that he walks in and out of the novel. Must go and find some more words by McCann, because this Irish-American storytelling was really something.

And on the whole entertainment thing, I've also managed to see two films (ta-da) and start a few other novels. Saw Jane Campion's Bright Star which was so beautifully framed and gorgeous to look at, and wasn't Abby Cornish fabulous, sweetie? And the opening scene, full of laundry and washing lines, like elegant birds in the landscape, made it a very domesticated, women's film, without being a conventional Chick Flick (which is a dopey term, but hey). For a story about a relationship with a male poet, it was so covered in cloth and held together by handstitching, with views below stairs and in the kitchen, so that the work of capital-R romance was on display. No "Elven Grot" for Keats' rather more earthy Lady of Shallot, rather a house that had to be rented and walls that were a little thin. Given that nothing much happened, it still held me . . . and of course, wept through the last bit, and emerged from the cinema with mad hair and a red nose, in the middle of a hot sunny day, and had to slink down the street without a tissue, feeling rather tenderised.

And then saw Avatar in 3D (on the "now for something completely different" stakes). It was so completely and utterly "filmic": a huge spectacle, roaring over your head and leaping right into your face. And yes, some ooga-booga spirituality and none-too-subtle colonialism versus the pure indigenous hearts and minds. But what a beautifully imagined world, with lovely detail. Am still wondering, though, what to make of the soldier with a disability at the centre of it: there he is, being self-sufficient and capable, and seems to have enough ramps and access points to get around in; yes, we see him being discriminated against by some macho marine pratts, but he doesn't give a shit; and the promise is held out to him that, if he could afford it, he could get working legs back again. So, is this the future? And then there's the project he's working on, where he has a "conventional/ unconventional" body by inhabiting this alien avatar. He first disappears into this pod, this terrible claustrophobic space that keeps him still and make him terribly vulnerable (exposing both him, and a central plot problem; that, and what happens when his alien self is asleep. Lucky there weren't any little alien babies nearby or he would have been in big trouble for sleeping through). His broken/ disabled body is left behind; he stands up and walks and runs and exalts in the physicality of his new alien body, that can not only stand up, it can leap, almost fly. He's remembering old sensations. Get up out of your wheelchair, my child, and walk. What if he'd been a kid who never could walk, who had to learn afresh: would he have enjoyed it as much? Must the disabled body always be positioned as something that's "wrong", so that even living virtually, while isolated in a pod, where "at least" he can walk is better than living in a new way in his own body. With all that military technology, you'd think he could have a pretty fine chair. I really want to know what the properly thought through disability activists and theorists think of this one. I don't really know what to think. A few links here, including a man who says hey, we don't all necessarily long to be "fixed".

But here's the link back to a non-alien, non-green-and-scaley skinned ordinary life. What if the person in the wheelchair is imagined not as a person - or a child - but rather as the worst possible scenario, the "nightmare"?

We live next door to a very nice, very social, couple. Two women who talk and laugh loudly, and know how to throw a generous party, with a bottle of champagne or 50, and everyone invited. So just before Christmas, I wandered over, leaving Abe (who wasn't in the mood) at home with the babes. There were lots of people who I'd seen in the street but not properly met. Often glimpsed as we all head off to work, or wrestle stuff into cars, or chase dogs down the street, or do 85 point turns (me) in a very narrow street with bugger-all parking. A young couple were there, pregnant with their first child. Young Professionals, who I didn't find wildly interesting, but I threw back too many glasses of sharp cold white wine and became all wide-eyed and overly-enthusiastic about everything (sigh, must grow out of that). So we talked about the baby, and the guy said things about how they were having one who'd be all dressed in frills and pink, making me grind my teeth with irritation, but really - perfectly nice, all very bland and middle class, everyone well educated and had read the right books on pregnancy and health. I'm not into giving out unwanted advice, or pretending I know how to do things. I did say they should yell if feeling overwhelmed, just on the basis that the snot/ green baby shit/ weird behavious might be reassuringly familiar.

So we talked about pregnancy, and health, and labour, and I did say that yes, with Miz M, it was a healthy pregnancy, full term baby, no known problems, and yet yes the mysterious, severe, disability happened anyway, and here's our lovely girl, likely to never walk or sit, may or may not ever talk, will need us forever.

Disability.

"That's my worst nightmare", he said. I was a little bit pissed so didn't get at all offended or upset, and just did my usual, "Oh well, you just cope with what you cope with, don't you" routine. But really, my daughter is your worst nightmare? Full marks on the subtlety stakes, I say.

And it had been a week of it. Not long before that, Abe and I had actually managed An Event without children. We organised a babysitter, and went out to a Christmas drinks thing for Abe's work, full of medicos and scientists and heirarchies like I'm not at all used to. Standing around on a lovely verandah with a view over the city and (again) very nice wine, and met some interesting and not so interesting people. A fabulous young woman who was a paediatrician and very funny, who pointed out a very senior guy she worked with, and that she'd always thought he looked as though he should be wearing a puffy shirt and being one of the three musketeers. It was D'Artagnan at thirty paces from then on. A man who ran a branch of an airline, but clearly didn't read the papers, which was odd. And a woman who told me she was a physiotherapists before she retired, and worked with people with disabilities. "Physios are terrific," I said, startling her with my conviction. So I had to explain why, and told her about Miz M's work with therapists . . . and then, in another act of great subtlety, she told me how her children used to be mortified when she'd be out with them and she'd see a client and go to say hello. "Mum", her kids would say, "why do you always have to go talk to the people in wheelchairs with pasta stuck to their foreheads". Oh ho ho ho and Merry Christmas to you, too, good to see there's a laugh to be had there too . . .

Nothing to Wear; Too many Things to Think About

Only two or three weeks to go before this baby boy decides to be born, and it's well over 30 degrees C this week, so abruptly I have nothing to wear. Found myself doing that absurd thing of staring at my messy wardrobe hoping that a cool, cotton, flattering, floaty-ish dress would simply appear - before remembering that I do have such a thing, lent to me by my impossibly glamorous friend Dezzi. She's about a metre taller than me, and a completely different shape, but it's a great beachy cottony dress . . . which accommodated the pregnant belly well, but squashed pregnant boobs flat and stopped me from breathing. Bugger.

And no, am not into defining myself by clothes or flinging them about in a flurry of decision making, but also enjoy them, have always liked the idea of bright red lipstick and feminism going well together, and am a fan of the fabulous frock. Remember Poppy King's "seven deadly sins" lipstick range? Gave me an excuse to wear bright red, matt, "Anger" as my lippy of choice before her business went bung. But I believe she's about to re-emerge. So damn that Sarah Palin for appropriating lipstick in a folksy way for a rightwing cause.

And even though it's not our election, our issues and policies, or even our political system (internalising compulsory voting as "fair" and equal, on the grounds that everyone has to, takes a while to deconstruct and to realise that it's actually rare on a world stage), the US presidential debate has made me realise what a wimp I am at times over other people's views. It's not because I don't have strong opinions or thought-through stances, it's just that sometimes I find myself resisting knowing what the "other side" is saying. So I find myself NOT reading Janet Albrechtsen, NOT reading Amanda Devine (oooops, oh dear, this has been up for 12 hours and of course I really meant Miranda Devine or even perhaps this pisstake version), NOT engaging with the rightwing pundits, and then really that's just NOT very clever of me. Because part of the critique inevitably turns on presumptions made by both sides about what the other means, said, represents, presumed and so on. So I've been forcing myself to engage with it all. (and thank you, Abe, for pointing out my idiocy for linking to the wrong person - oh ok ok, so I was linking in a hurry!)

So this weekend, really, I didn't want to enter the Bill Henson art debate, because the fearmongering, moral panic, paedophile-around-every-corner arguments annoy me to bits; didn't want to follow all the anti-Maternity Leave invective, as it seemed so knee-jerk 1950s all-women-should-stay-at-home (responding to the latest Productivity Commission Report and recommendations); and really didn't want to follow a debate about whether or not mothers were hijacking feminism, as debated on various Oz feminist blogs and in opinion pieces, as somebody who had felt the wrath of the world against single women for so many years (the great fear: independent women!) while, as a finally 40-something mother and part of a hetero-couple, seeing once again all the ways in which motherhood is itself coopted, politicised, exploited by all sides of politics, and judged judged judged the way we are so bloody constantly, with supposed economic elements laid over the top.

See, a wimp.

It's not good enough to ignore these debates. I can't just take the moral highground, as I sometimes do, and just think "oh, you can all just fuck off". Although I'm very tempted. So I forced myself to read Angela Shanahan with her very annoying take on maternity leave - although I can see the inequality question is part of it - but was spitting chips by the way she used the Sarah-Palin-like "but I'm not part of the chattering classes, I'm just a mum" conclusion. Not only utter crap (you're a columnist on the op ed pages of a national broadsheet), but buying into the old Howard era anti-elite rhetoric is maddening. And playing the guilt-and-childcare cards against working women and work-life balance drives me nuts. Thank christ for old hoofer feminists who've been around the block more than a few times. A letter to the editor by Joan Bielski pointed out that the old strategy of pitting childless woman against mothers was a longterm desctructive one, and managed to pull apart the debate in useful ways.

And I was amused by the implications of David Marr's arguments over artist Bill Henson and the viewing and assessing of pre-pubescent bodies, as discussed on Radio National breakfast this morning . . . and what it means that we might need to limit access to schools of those who judge children's bodies, look at them, make selections, approach parents etc. Fine, he said, so we have to do it equally: so no film and tv talent scouts, and no sporting and athletic scouts. Huh! Just watch the whole powerful sports lobby go into meltdown!

As to the feminist debate, and its appropriation, or not, by mother-feminists and single feminists . . . oh, perhaps another day.

Really, I wanted to have a spray about the overwhelming use of biological determinism in popular culture stuff around childhood and child development - and in other stuff, too, now I think about it. It can be so hopelessly reductive, as if we all live in nature and not culture. Of course, some of this is pure defensiveness in terms of Miz Muffet and her disability, as so much of the discussion presumes a sort of Darwin-turning-in-his-grave idea of natural selection and survival of the fittest. So the latest edition of doco "Life At Three" did a simplistic "dangers of obesity" program, that was both biologically driven and judgmental, and didn't allow culture at all (eg an argument about overweight boy children of NESB parents, in which the Chinese background of the family under discussion, the impact of the one-child-policy, and the worshipful relationship to small boys, didn't count at all. Talk about bodgy science and a complete blindness to context and culture). And of course, there were also various scientists doing lots of self-righteous talk about the dangers of contemporary life and too much TV watching etc, and not enough exercise, that did make me think about what this will mean for Morgaine, as a child who can't take a single step, who can't do any exercise without someone else moving her limbs for her, but who has to eat to grow and, indeed, who finds important sensual and experiential pleasure in food and eating. So yeah, let's shore up the judgment about the fat kid in the wheelchair then, shall we?

Again, haven't yet had a chance to think this through in terms of its implications - but will probably talk about it with the new paediatrician when we meet her later this week.

But really, once again I'll say out loud that this blog needs to be more disciplined, but at the moment the imminent birth means I'm just filled with a wild sense of urgency, and a list of things I want to do and talk about and think through and grapple with. And because I'm sleeping badly, I compose arguments in my head (I've always done this, as I'm sure so many people have - and we used to think of it as writing in a journal, or letters to the editor, or speeches to a forum, or short-stories or a book and now, in an indulgent, badly edited way, it becomes an issue for a blog. Hmmmmm). So would really like to get to:

- A paean to friendships: and the importance of The Editor for my sanity, and why her long friendship is an inspiration; why Dezzie and her visual way of engaging with the world helps me see it in a different way; how Myff has helped my survive Brisbane; why long-distance friends help bring perspective; the role of best male friends in my life, especially Davos. And why I don't buy the jealousy-driven debate about why men and women can't ever be friends.

- More on the whole biological determinism debate, body size, behaviour and so on.

- Books. And why Louise Erdrich's Plague of Doves was a pleasure - and its connections to other people's blogs on Native American issues and indeed indigenous issues here are thought-provoking; why Julian Barnes' Pedant in the Kitchen made me laugh; the various things brought up by the Mothers Who Think collection; what's going on with David Sedaris; why a 1963 novel seems much more dated than one written in the 1930s or 1940s; Ayelet Waldman's novels versus her articles; all those disability studies readers I have stacked up ready to go.

- Children's culture and folklore, and the world of clapping games that my 7 year old friend reminded me of.

- "The limits of the glass half full approach" - and a conversation I had with a psychologist recently, on Cognitive Behaviour Therapy and mindfulness etc. Damn, there goes my presumptions about the power of optimism and resilience! What happens if you can't change it, and you need other strategies?

Meanwhile, of course, the immediate urgency involves bills to pay, tidying up to do, piles of books and articles to file, new frocks NOT to buy, tax (damn, the most boring bit), phonecalls to make, and typos to correct. Oh, and perhaps what novels tend to call a "swipe of lipstick" to be applied . . .

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"!

Standard Phrases and Eugenics

I'm beginning to pity anyone who has an offhand, interaction with a stranger, encounter with me. Their every word will be judged, assessed, and analysed. Whereas with friends, huh, I can still have normal conversations, can cope with inconsistencies, can say stupid things myself, can enjoy the complexity of any response.

Blah conversations with strangers on the other hand, can be read as an entree into the zeitgeist, and analysed accordingly.

What the fuck? Get to the point!

Ooops, sorry.

So, I was speaking to a woman on the phone the other day, organising an appointment. M was burbling in the background, so she asked me how old she was - and various other personal questions, which I found myself answering. There's nothing like a straight question, I find it terribly hard to avoid. She asked me if I was planning on a "natural birth", and I said yes, but explained that I'd had an emergency caesarian last time, so had my fingers, toes, uterus and fanny crossed (note, this is not an American fanny, it's an Australian fanny -- not the same thing at all. Oh, ok, so I didn't explicitly talk to her about my fanny . . .) She then said I was "very brave". So I commented that to me it seemed like, hopefully, the easier option, and I didn't think major abdominal surgery was going to be anyone's easy way out. So far so completely circular ridiculour conversation. All this went on way longer than it should have.

So after a bit more smalltalk, crapping on, I was offered the old standby, "oh well, as long as they're healthy, that's all that matters."

I was immediately tempted to say something along the lines of, "Oh really, well my first has a disability - a defect - so what should I have done, chucked her away as a reject?!"

Which would have been horribly confronting and unfair, and probably would have made the poor woman swallow her phone. But still, as an asinine supposedly easy comment, what does it really mean? And what on earth does it mean for parents who have terminally ill children, or spend months in hospital with their little one, or who have any of the other many situations where the flashing and buzzing neon sign above the child's head says, "Not Healthy!" Not OK. Houston, we have a problem?

And does it really go back to a Eugenicist impulse? Of course, in Australia eugenics had its most direct impact on racial politics and on the White Australia Policy as enacted, eg, via the 1901 Immigration Restriction Act and the Pacific Island Labourers' Bill; but here and elsewhere it also informed discussions of reproduction, disability, and population  health. And there's a strong acitvist line of feminist disability work arguing that there's a eugenics agenda imbedded in a lot of the debates around IVF etc . . . and while there's some great stroppy stuff here, I'll confess I'm also very uncomfortable with the line developed (for example) by "feminist" anti-abortion activist Melinda Tankard Reist on what she calls Defiant Birth, about women who "resisted" the push for them to terminate pregnancies where they know their is a problem. She's also written - and searched out - stories about grief after abortion.

And yes, here we go, another self-serving blogger justifying her life and politics: that's me. I don't regret having Morgaine for a moment. I love her to bits. But we did have various chromosomal tests early on in that pregnancy, and agreed together that we'd terminate if there was an obvious (eg chromosomal) abnormality. Everyone has their right to an opinion on that - and it annoys the hell out of me when those diagnostic tests are presented as if they're simply visual cues or sentimental journeys into the uterus. That strikes me as unethical on the part of those doing the tests; and brainless on the part of those who hadn't thought about what an adverse finding might mean (whether that's to terminate, be prepared for a different parenting role etc). But I have a friend with a sister with severe physical and intellectual disabilities, who was very frank with me (years before having M) about the importance of not sentimentalising what it means to care for children with disabilities. She knew just what it was all about. Her sister has 3 words only; is now in her early 40s; and every time she gets a visitor she looks up hoping hoping hoping it will be her mother - who died so many years before. And when my friend finally conceived a much-wanted child, and there was a disability detected, she terminated the pregnancy. She now has two other children.

So after having M, being pregnant again, our decision was even clearer. We knew and we know we can handle having a child with a disability - but knowingly having two children with disabilities? Not so sure. So we had a CVS, and everything looks fine with boyo. Of course, if he has a rare and interesting disability, as M does, we'll just have to cope with it. But it doesn't change my belief in women's right to an abortion.

And all this, of course, is being played out on an international stage right now, with the US election. Well, it's sort of an international stage, given that we're all watching; in other ways it's a surprisingly parochial stage. But the debates around Sarah Palin are partly about motherhood, women in the workforce, disability - and have been coopted as embodying an anti-abortion message, although in fact she's explicitly anti-abortion herself - as well as all the hokey small town salt of the earth stuff. Some of the discussion is more intelligent than others.

Although for light relief, it's worth checking out this presidential alternative. V Funny.

I recently went a-trawling to try to check out other blogs on children with disabilities, and I came upon thousands - literally, thousands - of blogs discussion Sarah Palin and her son, many of them (many many scarey many) from a "god's gift" perspective.

But really, I should do the circular spiel thing. Back to the phone conversation and the "oh well, as long as they're healthy" comment. At one of my very first meetings of the My Time group I went to, once the other parents of children with disabilities realised I was pregnant, what they all held their breath over was what the situation was with this baby-no-2. Of course, given M's case isn't chromosomal, or even anything with a name or even a diagnosis, it's impossible to say . . . but it was, in fact, a different question from these people. They knew what was at stake in a different way. One woman there does have two children with the same very challenging condition. With all my ressistance to the presumptions associated with this particular "imagined community", that was one of those moments of collective knowledge, empathy and warmth, that really did work for me.

Now, I'd better get back to sweating. It's berloody hot.

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.

Is it fear of the "d" word: Disability?

I treked off to a birth class on Wednesday night, and had a rather odd time of it. It's true that those classes are always a bit odd, because they're a mixture of the informative, the new, the obvious, stuff you've already read, things that may surprise you, heightened emotions, and women who range from looking radiant to merely lumpy. So, nothing new in all that.

It was at the end of a rather intense day, as it was my last day at work before Mat Leave. And I keep being reminded by reading blogs from the US, that there are an awful lot of women out there without any access to Maternity Leave or other Parental Leave. And that's even knowing Australia's far from the most enlightened on this. (Useful stuff available via the recent Productivity COmmission Inquiry into Parental Leave  But anyway, I got into work at about 7.30 in the morning, and was going like the clappers all day. Handovers and emails and discussions and printing things out and backing things up and trying to sort things out; and very nice conversations with all the people I'd been working directly with. And because most of my direct colleagues are interstate, I could do that in a fairly focussed way. So I tried to ignore the flurry of activity in the shared space outside my door, until I couldn't ignore the fact there were strawberries and plates of gluten-free biscuits (always fab when people remember you're a coeliac!), humous and cameraderie, all beginning to be spread around. But I always find those things a tad excruciating and never quite know what to say. Anyway, was given a truly gorgeous bunch of flowers, and given a great speech by an older feminist colleague who framed everything vey nicely in terms of both personal lives and working together and professional acknowledgments. Which left me feeling a little raw and regretful about leaving behind what is, I believe, a pretty extraordinary workplace.

And also had a chat with a freelancer who'd popped in to work who I'd actually shared a house with twenty years before in Sydney, who had spent his time then being a bit sneery and with a rather pronounced and heavy chip on his shoulder. I seem to remember beign accused of being a bit of an intellectual wanker by him, while watching him treat his then girlfriend with hints of disdain. Anyway, he's turned into rather a thoughtful, sweet, Buddhist with his own claims to be being a bit of an intellectual wanker, and who said -- disarmingly -- "I was in a VERY different place then". Code for: I was a bit of a dickhead wasn't I? Yep, sunshine, you sure were. Anyway, not that I'd spent much time pondering what had ever happened to X, it was rather nice to neaten up that little bit of history.

And hurtled myself out the door with an eye to the clock at the end of the day, hoping everything was done, to pick up M from childcare.

I had about a 15 minute reprieve, once home, to go out again and go to a "Vaginal Birth After Caesarian" workshop. Abe was staying home with M, and is not a fan of these things anyway. While iIm no fan of driving off somewhere I'd never been to before, at the end of peak hour, to spend two and a half hours with a roomful of strangers.

Of course, I couldn't find the place. Badly signposted, too many major one way streets with other cars breathing down your neck. The usual. So parked ages away and stomped and waddled up the street as fast as my stiff pregnant hip flexors would take me. Got there, and it turns out we were supposed to be sent maps and other people were lost in the suburban wilderness too.

So had barely recovered from a fit of the flusters, and had been in the room for less than 3 seconds, when the facilitator said, "so can you tell us why you had a caesarian last time?"

So blurted out something along the lines of "my daughter has a disability and with the condition a larger than usual head; had a good active labour and fully dilated; but she couldn't fit through -- plus flexed oddly and an anterior lip". Always feel a tad exposed in those situations anyway, when you don't have time to work out how to frame the whole "special needs" etc questions and implications.

Took a few deep breaths and checked out the room. Eight or ten pregnant women, and I was the ONLY one who came on my own. All the others were there as couples.

So which was it: woman on her own, or the use of the dreaded "d" word?

Because the session went on for almost two-and-a-half hours, complete with a tea break, a bit of standing around, general chatting, and aimless talking about pregnancy and birth at the end.

But get this.

NO ONE spoke to me. I could barely get eye contact.

I'm generally a pretty social person, and can do the general social blah as well as the next person. So I figured it was some sort of anxiety. On the other hand, it didn't bother me overly, as I felt I was there for instrumental reasons. And perhaps there was some mind reading going on, as I did think that two of the couples in particular were complete fuckwits - with lots of comments presuming that a caesarian really would be "easier" etc, and a bit of an "ick" response to pictures that showed regular births. (And so maybe I had a "who are you people, and why do you appear to be so brainless?" look on my face.

Because I really really really don't want to have another emergency caesarian. Why? Mostly because it's major surgery, and because I wouldn't be able to pick M up for 6 weeks. And as she can't sit, walk, crawl or do anything else on her own, that'd be disastrous. I hadn't realised quite how anxious I was about it until I had a full-on nightmare about it the other day, and it was all about the aftermath. Of course, if it happens it happens; and as with M it really did have to happen and was fine in the end. I don't have any left-over emotional scars about it.

But really, the point of this blurty-blog is to wonder: was it being on my own that disconcerted the group (in which case, once again, hats off and salutations to single mothers out there); or was it that I'd used the "disability" word early on in the piece, and left them with nowhere to look?

Fathers & Daughters and the Adoring Gaze - and Leonard Cohen

OK so it's just after 4 am, and neither Morgaine nor I can sleep. She can't sleep because of ongoing respiratory issues and coughing attacks (and the need to be cuddled and have her belly kissed, which I can also do from here); I can't sleep because it's my last day of work today before Mat Leave and I have so many things swirling around in my head that they're keeping me awake. Which is a bit of a bugger, as I also have to head off after work to a two hour session on "Vaginal Birth after Caesarian" or VBAC for those with a tendency to fling it into everyday conversation, as I do. (A V-Dub? said my sister, what on earth are you talking about??) 

It's also that stage in the pregnancy when you realise just how important unconscious movements in sleep are. Because if you can't do it, and wake up after lying in one position on one side, because the elegant wiggle you could usually do was something like a beached whale without the help of 26 anxious helpers on the beach with a TV crew in tow, is just impossible. So your shoulder's sore and your hips feel weird, and all my earrings are imbedded into the side of my head. (Bugger off, it's late -- so a shift between the you/ one voice and "me" is impossible to negotiate at this hour.) Although I've never really got the ongoing obsession with sleep that so many people have, which must be the privilege of a person who can usually simply sleep. But an old friend of mine used to always begin her conversations with "how are you - exhausted?", even before she had three children. And this used to drive me nuts.

And I know it can be the central obsession of parents, but I'll put it on record now, in order to be proved wrong in about six weeks time, that I do NOT want my dominant mode of conversation with new Baby Boy, to be about how much I have or haven't slept, or how much he has or hasn't slept. He'll be newly hatched, so he'll wake up constantly wondering where the hell he is and whatever happened to all that water. Fair enough.

So from sleep and pregnancy then, I'll move on to emotions, tears and pregnancy. I was watching the last bit of the Leonard Cohen doco  I'm Your Man last night, with Abe on the couch and M on his lap. Looking at him with utter adoration. Then, right near the end, Rufus Wainwright sang "Hallelujah" (you can watch and listen to it here - although this version has clearly been captured from a German versionof the doco, complete with German subtitles, oh well) and it moved me to tears. I also thought it was a clever as hell, interesting, wonderful doco. And just loved hearing Nick Cave describing how hearing Cohen helped him think through everything he hated about living in small town Australia . . . and his version of "I'm your man" was lovely, but him singing "Suzanne" (one of the few Cohen songs I tend to be underwhelmed by) showed me what other's see in the song. Anway, I don't usually weep over songs, and a friend did suggest that this was about the hormones of late pregnancy. True, although I'm happy to add in a dose of the sublime in song, too.

But the doco then moved to a hilarious version of Cohen himself singing Tower of Song which just proves you can be a poet and not take yourself too seriously. And I have no idea whether that link to a YouTube clip will work. But this linking malarky is quite fun, isn't it??

But back to the girl on the lounge with her dad, while we watched the doco. Perhaps the emotions were all there and ready to go because everytime I looked at them, M was gazing up at Abe with complete and utter love and fascination all over her face. And with her very gentle movements she'd reach up to touch his face.

Surely, that'd "bring a tear to a glass eye"?

A woman I don't know just made my day

Huh, there you go: a reader! Thank you, Virginia Harris from the US. It was a long day - not a bad day, but a long one, definitely. I woke some time after 4 am, to hear the baby cooing away to herself. Abe got up and gave her a pat and checked her nappy and climbed back into bed and wrapped himself around me. That was nice, so I snoozed off, and awoke some time after 5, literally dripping and slippery with sweat. Hmmm-hmmm, too gorgeous for words. Hot because of the pregnancy; hot and sweaty from crazy hormonal dreams; hot from too many covers. Coughing half the night, bugger it, I think I'm getting some sort of coldy thing.

Morgaine was gurgling away, so I got up and did the bottle and breakfast thing, and still managed to be later than I wanted to be. Got to work at about 7:45, leaving Abe and babe behind to do the rest of the morning and childcare wrangling. Only two more weeks left at work before I'm on Mat Leave though, so there's a shitload of things to do, to organise, to write up, to handover, to do briefings on, to make sure I don't forget. And something I've been working on since May still isn't finished and gets more complicated by the minute.

Spent an hour and a half filling in the guy who'll be filling behind me. Another hour on the phone to the guy whose job I'm filling behind. Another hour or so with another colleague doing a job I used to do, with lots of energetic feedback and ideas and filling me in on new freelancers and others. Millions of emails. Reports to write. Some now very very late surveys I'm supposed to do.

And Myff tells me via email she may have to have some invasive, gynaecological, surgery, and I run out of time to reply. Damn damn and damn.

Discover in between work commitments that it's hard to find a paediatrician who might work as a conduit/ overview/ adviser for M. Have contacted 6 in the last few days, who've been recommended, and who aren't taking new patients. What?? Missing Sydney and having a dose of the "what type of berloody city is this anyway" things, and then finally find a woman who will take us on. Felt as though I had to prove M was going to be an interesting case (trust me! she's an enigma! we may never get a diagnosis! Surely that's a challenge . . .)

And of course, Morgaine's name is not really Morgaine, although it was on my personal list. It was vetoed by his-name's-not-really-Abe very early on in the piece. M's name is a little more unusual, and is destined to be spelt aloud forever and slightly mangled. So I was interested although a little annoyed by the tone of the recent Life Matters Talkback on names, which was a little too Anglo in its approach to "unusual" names. As usual, there was some good stuff in there, but it hardly acknowledged the migrant history of Australia, and the long tradition of names being changed. So was pleased to come across this Salon article on the politics of naming especially in the black American context. Not that M's name is a political statement, in case it looks like I'm making any grand claims here.

Where was I? Oh yes, writing in an unstructured way. Would usually either make all of these points discrete, or re-order and restructure . . . Instead, let's see how a bit of streaming goes, hey?

And I do know that in one of my first posts, not so long ago, I mentioned the diarist Samuel Pepys and so was pleased to come across this article about him, his shorthand, his sexual "peccadilloes", and let's face it his mysogyny and violence and arrogance . . . as well as the delicious daily life details of him being distracted by the small of shit from his neighbour, of him NOT cancelling a dinner party on the night of the Great Fire of London, and some great observations on the bourgeoisie and work from the reviewer. A reminder of why History matters.

Oh yes, that reminds me, my fave online feminist history site is Philobiblon.

But where was I, again? No, I need a bit more structure, and I seem to have begun this one not so much around an idea as a chronology ("what a difference, a day makes" -- lordy lordy, I can even hear her singing it). And the working day ended as so often, with the last hour an intense gallop towards the clock, knowing when I have to leave to pick M up from childcare. Cramming in phonecalls and emails and updates and decisions, and surprising young women in other parts of the country by saying I'd heard they did good work, and wanted to know more about who they were, what their skills are, and whether they might be available for 4 weeks, 3 months, 5 months of possible work etc.

Listened to the repeat of Late Night Live on the way to childcare, on the other side of town and closer to home, with some great stuff on the identity of Brisbane with journo Tony Koch and aca Julianne Schultz. Had been feeling a bit jaded and small-townish about the place in the last week or so (did I say I still miss Sydney???!!! well I do I do I do), so a reminder of its vibrance and art scene, the political radicalism that came in response to Joh Bjelke Petersen, the importance of the Springbok tour (although I was too young for that to register as other than historical) and, of course, the importance of the Fitzgerald Inquiry  which I do remember . . . made me feel better about having moved here 2 and a half years ago. But not entirely reconciled.

So, arrived to pick up my girl, who was in the midst of all the other babies and toddlers (great), but lying on her back on a cushion while they all sat up and did their thing (not so great). Was so pleased to see her didn't have the courage to suggest it'd be better if she'd been put in her TumbleForms chair, so that she could sit with them, be in the same eyeline, interact in a different way. Besides, I know they're very good at having her interact. And apparently she played with "goop" today, as part of a whole sensory play thing.

And ah, the warm soft smell of her neck as I carry her out . . .

Then home, and as she's sitting in my lap we check the home computer, and there's a lovely warm reply from Robin Barker, per my earlier post, and a response from my first ever known reader of this blog. Huh!

And to keep up the momentum, M and I do the whole bottle and cuddle thing; sing some songs; she plays in her chair; I finish making a batch of marmalade (yeah yeah, whatever, I find it relaxing); she's thrilled when Abe gets home; dinner of a slightly-too-gristly Osso Bucco I made (yes I AM the cook in the household, but abe does all the washing up and cleaning up and washing). M and I play on the lounge with a ball, even though she keeps sliding off to the side because she can't sit up unaided; while I have one eye on the Brit series "Grumpy Old Women", which had its amusing bits but really I want to grumpily declare they should retire the berloody franchise now . . .

And Abe has been playing with the baby downstairs, and now she's all very cute and ready for bed in her flanny jarmies, here on the spare bed in the study, while i think about heading off to mine, to read a reasonably entertaining history of cleanliness, or maybe to go back to the beginning of David Mitchell's Cloud Atlas because it was so fabulous, or to pick up A S Byatt's Possession for 846th time, because it's the comfort read du jour.