Monday, September 27, 2010

Books in Homes



I took this picture in 1997, shortly before we left Italy. The last place where we lived, a single room with a passageway-cum kitchen and a tiny en suite bathroom, was a rent-free arrangement that helped us through whilst I served my twelve months as a conscientious objector, unburdened by such base things as a salary. These were the only bookshelves proper, although we carved out more space in a glass cabinet that had belonged to my paternal grandmother.

Those aren't my books, either – they're our books, Justine's and mine. The survivors of a couple of moves and of a progressively diminishing space, they were about to be cut down to what could fit in a mere couple of boxes as we prepared the make our biggest move yet. My books – that is to say, the ones I had accumulated before moving out of my parents' place four years earlier – had already largely been disposed of, and besides the dwindling disposable income there was the awareness that eventually we would have to leave most of them behind anyway, and so I had progressively taught myself to stop hoarding.

It wasn't easy, however: hoarding books is something of a family trait.


In an effort to recall what it was like to grow up surrounded by books, I cast my mind back to the few times when I wasn't: whilst staying at my maternal grandparents', who owned as I recall two books: Jack London's The Iron Heel and a biographical work whose title I forget by Nonna's hallowed Sandro Pertini; or during the cumulative six weeks or so in the year that we spent holidaying in our caravan, when once you ran out of whatever reading material it was that you had packed you could fall back on a Topolino comic book with the first part of a two-part story ('Topolino e il triangolo delle Bermude' – I still hold out hope to come across part two some day), and a handful of mystery books from the Giallo Mondadori series, including, from memory, a Perry Mason and something by Rex Stout. And if the holiday happened to be abroad, there was little one could do but read those again, because read something one must.

Another way to think inversely about our house full of books comes by way of a thought experiment: what if my parents had been born one hundred years later, and had hoarded digitally? What if their books had been lined up not on shelves but in folders, or hard drives? I think back on the single, beleaguered Italian aisle at Victoria's library, on the value of those particular books occupying that particular physical space, imposing their useful limitations on it. What is the digital architecture that could simulate the space, replicate its instructional value?

Because growing up in that house full of books was in itself an education. It helped too that boredom still existed, back then, that when there wasn't anything on television there really wasn't anything on television, and that Topolino came out only once a week, so eventually I'd have to reach for one of those books: in gloriously age-inappropriate fashion, at first (War and Peace - at ten?), and later supplementing or undercutting the school canon. I plucked Borges, Cortazar, Ocampo and Roth, Kraus, Böll, Kafka, Musil, Nietzsche from my sister's library, and Calvino, Buzzati, Brecht, Mann, Pavese, Levi, Marquez, Corti, Ginzburg from my parents'.


And then Clavell, Simenon, The Sorrow and the Pity, Remarque; books on Etruscan pottery and the erotic art of Pompeii or Greece; Ottiero Ottieri and other political writers from the Sixties that Mum studied for her dissertation; Marguerite Yourcenar, the Greek lyricists, Ennio Flaiano; every two weeks, a new Giallo.


I didn't seek any of these books out, nor did anybody encourage me to read them; they were simply there, available. Even the ones I didn't read – that is to say, the vast majority – contributed to the education, naturalising the idea that vast tracts on history or Western philosophy might occupy a family's living space, and that the systematic treatment of those subjects wasn't the exclusive prerogative of educational institutions. It was, after all, largely via that library that my father had educated himself, reading amongst other things all of Livy in a parallel text edition, quite possibly teaching himself a fair bit of Latin in the process. My self-education wasn't nearly as heroic, but then unlike him I did actually go to the school where many of those things were taught.

(A book that my father used partly to improve his French. I remember staring often at that cover with utter fascination when I was a small child.)

I don't recall when it was that I bought my first non-comic book, nor what it was. It's quite possible that it was an issue of Urania, the bi-weekly periodical of science-fiction novels and short stories, for it was a genre that I had to pursue largely on my own, as I did fantasy, albeit a little less energetically. The boxed Nord edition of Gene Wolfe's Book of the New Sun series survives somehow.


I think I can more or less trace how the cocktail of these two genres, via the tutelage of Poe, Dick, LeGuin, Douglas Adams and Stefano Benni, moulded my current taste in fiction, but sometimes I wish I had more photographs of that growing library. What did I read at age eighteen, twenty, twenty-five? I feel that if I had a record it would go some way towards reconstructing what I was like back then – a notion that, if not altogether naïve, is certainly overstated: I doubt in fact that you could tell all that much about my family by examining their library, and besides books can also be a crutch, a fetish, or slowly close in on you.

There can be such a thing as a house with too many books. Such is perhaps ours nowadays for Mum: there are so many books she won't touch ever again, and conversely, so many that she would perhaps be glad to revisit if only she could locate them in one of those dreaded second rows behind. It's quite hopeless, and cannot be helped. Perhaps our house now is made of books, and if you removed them it would cave in, as was literally the case for a section of our library for a time.

No, I shouldn't be sorry that I stopped hoarding nor that I had to make choices. Choices are good. I just wish I had chosen better.


The thicker of the blue books in this enlargement from the pre-departure picture at the top of the post is Cesare Pavese's translation of Moby Dick. How foolish of me to leave it behind. I took Italian books that for the most part I could have readily found in New Zealand, as it turned out, and books in English that are still widely available, in libraries or for repurchase. What I should have taken more of were Italian translations of foreign literature – the Russians and the Germans, the Spaniards and the South Americans: Borges or Tolstoj in English seem so foreign. And even when it comes to my other language, Pavese's version still seems a more native text than Melville's own.


I also regret not having taken some books that had more of an object value. The thick green one above is my very tacky copy of the complete works of Edgar Allan Poe, which I'm pretty sure is also the first book in English that I ever purchased. I still can't account for its loss, which was likely a packing panic mishap, but beside the ultra-soft fake leather cover with the gold lettering it had another notable characteristic: I knew it so well I could find passages in it based on where they appeared – whether on an odd or even page, towards the top, middle or bottom, according to how the paragraph was shaped, and so forth. It was the first book I studied out of pleasure, and it made it valuable not only from a sentimental but also from a practical point of view – I simply don't know Poe as well in any other edition.

The larger point of all this is that, having to design a small library in a short space of time, I made some bad choices, failing to anticipate the kind of selection that would be most meaningful and useful to the future me. But the libraries from which no book is ever subtracted, like my family's, don't strike me as a desirable model either, and the digital alternative, without dimensions or weight, even less so, in spite of the obvious advantages, including its planetary portability.

No matter how imperfect our libraries, there is a value in furnishing our houses with books, and be encumbered by them, as one is encumbered by one's culture. Whenever I visit home I am reminded of this burden in a variety of ways, and books are perhaps the most visible of all signs, and the most densely symbolic. The high shelves in particular look down on me like a near-impenetrable wall of ancestral knowledge, a palisade of books that I know quite intimately as objects, ornamental masonry. Like the spine of the Giudizio Universale by Papini, an author whom my father loved.


I have the lifelong option of picking up that book, turning the same physical pages as he, feeling differently about those written words no doubt, but nonetheless establishing a connection that is not solely of the shamanic kind, for a printed book is also an instantiated material form which conveys its own meanings via typographic notations, formal elements and what Don McKenzie has called 'the very disposition of space itself'.

I may, or I may not, and it is an accident of our family's history and circumstances that the book is still there, and the option still open. But it still means something to me that it is.




I wrote this ahead of Jolisa's latest, and my being away prevents me from taking part in that discussion, but if you've got this far you may be interested in both the post and its comments thread.
The McKenzie phrase is from page 17 of Bibliography and the Sociology of Texts.

Tuesday, September 21, 2010

I'm on a Plane


Earth is out of bounds for us now; it remains a planet accessible only through media.
(Otolith I

We are travelling at an altitude of 35,996 and a speed of 556 miles per hour over the southernmost tip of India. I can chart our progress on the screen on the back of the seat in front of me, which also includes a USB port, a power point, and a handheld device doubling (quadrupling?) as a remote control and mobile phone on one side, and a full keyboard and videogame controller on the other. Thanks to this device I can alternate between the flight information screen and a confounding range of entertainment and work-in-flight options: choose between dozens of films and over 150 hours of television programmes, start and pause and resume them when I desire; play over 100 videogames, some of them between seats; keep informed with text news updates from the BBC beamed up during the flight; watch PDF documents or photographs from my USB device. And that's without even getting the laptop out of its bag.

On this flight I can sleep, I can read, I can be entertained, I can even make the occasional phone call. And they bring us meals at pre-ordained times. It's like a minimum-security prison with wings.



Forget about space travel, or intelligent warfare, this here is the pinnacle of the industrial age: hurling people in tin cans from one side of the world to the other, whilst sustaining them through poorly recycled air and ersatz gourmet meals, but most of all, keeping them entertained and productive, invisibly tethered to the world below.

What is the population of this suspended city at any one time, would you say?

There are the people who seem able to sleep through the whole thing, all thirteen straight hours of it, waking up for the meals and then immediately switching off again, as if on command, often without even reclining their seat. They breathe life into the old science-fiction trope of hypersleep, holding on to the outdated idea that travel time is lost time. But most passengers remain awake at least until some time after the first meal is served. Yet there is very little talking going on in the cabin, even amongst relatives and friends. Few read books or magazines, while the rest of us plug into our 'information, communication and entertainment unit' (ice), where the choice really is confounding. Joseph immediately zeroes in on the videogame Galaktor, while I succumb – as I always do, if given the chance – to the combination of Billy Wilder and Jack Lemmon.



The Fortune Cookie (1966), also starring Walter Matthau, is the story of an insurance scam, and has an unusually developed racial angle – if not for its time, certainly in terms of Wilder's work. It's also more than usually misogynistic, but ever so damn interesting, especially if one cares to compare it to the current crop of social satires produced in the United States. Lemmon is just brilliant, even when playing the straight man to Matthau he steals the damn show. And look! The great Sig Ruman, in what must have been one of his final appearances.Typecast as ever, he plays an Austrian medical luminary hired by the insurance company to verify Lemmon's supposed injury.




Just the other day – although it feels like weeks ago already, as is customary when one embarks in long-haul travel – I saw the Otolith film trilogy at the Adam Art gallery in Wellington. It's a highly secretive affair, as per usual at the Adam, but if you're in Wellington you really should set aside a couple of hours and go see it.

(Entry by koha, closes October 10; don't miss the Ronnie Van Hout installation on Flying Nun while you're at it, and allow me to tip my hat to Stephen Parkes for the recommendation.)

I was struck especially by Otolith I, whose science fictional premise I find very suggestive at the present time: humans born in low gravity on orbiting space stations have lost the ability to live on earth due to the abnormal foetal development of the otoliths in their inner ear, which cannot withstand ordinary gravity. So I look around myself and wonder: what would it be like not to be able to get off one of these things? To have to live permanently suspended, off-planet? How would we conceive of earthlings and earthly affairs, which we could only apprehend medialogically but that would yet sustain us? (For there are no resources for us to mine at this altitude, nor food to produce.) And what kind of economies and societies would develop at thirty-five thousand feet?

It is very difficult for me to imagine having to spend any more than thirteen hours on this one flight, any more than the overall thirty-odd of this trip in airports and on planes. Who could bear it? Yet there are so many lives on earth that don't fit most people's definition of bearable, and still they are lived, enough to suggest that the permanent jet-setters too would adapt.

***

The flight was comfortable
So much so that it became disquieting.

(Otolith II

Another key characteristic of the Otolith films – their extensive recourse to archival footage, especially from old Indian films in black and white – comes back to haunt me. I enjoy the works of Billy Wilder and Jack Lemmon for a host of entirely justifiable, intrinsic reasons, but also and inextricably because they were a regular feature of my childhood film diet. To watch them is to repeat a family ritual, except in an alien and, yes, disquieting context.

Joseph makes matter worse by challenging me to a game of classic Pong. What is it that attracted him, with so many games to choose from, to the one that is by far the most primitive? I beat him of course because hey, I grew up on Pong, and I remember the one trick: to wait just above or below the spot that the ball is headed for and then at last second snap at it, sending it at a wide angle towards the nearest wall so that it will reach the opponent's opposite corner at speed and possibly bounce again just before the baseline, making it harder to predict where it will end up.

*** 

At some unspecified later time, following a period of broken sleep, Joseph has discovered with much glee a series of Mythbusters episodes, while I settle for The Karate Kid. Remind me which one of us is eight years old again?

Plus if I was trying to eschew the hauntological stuff, I might have been better advised not to choose a remake of a film that came out when I was a teenager, or one that were a little harder to plot in advance as it cycles through all the available clichés of its genre. It is not an entirely un-interesting film, however, in the context of how Americans go about re-imagining their relationship with China. Besides the utter sadism and brutality projected onto the regimented Chinese youth, there is at least one other arresting image: the wreck of the car that Jackie Chan's character keeps in his living room, patiently working on it and restoring it over the course of a year, until the anniversary of the accident in which his wife and son were killed, at which point he reduces again to a wreck in a fit of thoroughly methodical rage, and the cycle can begin again.

To make and unmake the same memory, over and over: what a fitting background image for this suspended life. And it plays concurrently on dozens of different screens, a popular choice amongst new releases. That's another thing you do: watch what others are watching, catch silent bits of films, splice them during periods of restless sleep, imagine or dream up whole plots and endings. Did I really catch Asif Mandvi looking as if it was all he could do not to laugh in a sequence from a fantasy action blockbuster? I think so, but couldn't say for certain. Not being able to access imdb at this point counts as a small mercy, a little haven of disconnectedness. Every year, every trip back home could be the last without full Internet access, and the prospect of an even more thoroughly productive and entertained time.

But now we begin our descent, for the third and penultimate time today, and so the laptop must go away. Another small mercy, possibly.




Otolith I, II and III are showing at the Adam Art Gallery at Victoria University in Wellington until October 10. Entry is by koha. It's the first time that the the three films are shown together. 

Read Nina Power's essay on the Otolith Group for Frieze

Monday, September 13, 2010

The Questions Asked



This is not our daughter's story, so much so that I won’t even call her by name. It is the story of sixteen months spent battling to ensure that she have access to the same education system as everybody else. It is the story of the questions asked and the time spent waiting, of endless evaluations and constant pleading. It is one story, therefore a partial story, with no claims to representing a universal experience. But it's not an untypical story. We're likely, if anything, to have had it easy. It is also a story with a happy ending, however provisional, and it pays not to count on that.


The story begins in May of 2009, when steadily growing concerns about untypical patterns of behaviour and development make us approach our GP and the local kindergarten teachers, no longer to ask for their professional opinion but rather to insist for referrals. We have deferred to their expertise and initiative for too long, waiting to be told. We didn't know at the time what we do now, namely that our child presented with textbook signs of autism according to the yet to be released national Autism Spectrum Disorder Guideline. To the extent that I hope other parents in our situation might be able to take something out of this story, it is above all this: don't wait. Don't labour under the illusion that, should your worries turn out to be well-founded, your child will be cared and catered for promptly. The waiting lists are appalling, and it pays to get on to them as early as you can.

The pattern of all our subsequent dealings with the public service in this area establishes itself right from the beginning: a prompt initial contact followed by a seemingly endless wait for actual support and intervention. The Ministry of Education assigns us a speech therapist who comes to our home in a matter of days for an initial assessment of the situation. She seems courteous and capable. She asks us lots of questions, and we welcome them: it feels good to talk to someone about our concerns, to get some things off our chest and receive some basic advice. But as for the response that will follow, things get more complicated. To turn the suspicion of autism into a diagnosis and access the services offered by the health authorities, we need to see the Child Development Team at our local hospital, in six to twelve months (it turns out to be twelve); while the Ministry of Education will deploy their optimistically named Early Intervention Team in approximately six months (it turns out to be nine). There is no interim provision, no half measure: so long as our daughter can tolerate being at kindergarten – and she does, at this point – it has to suffice.

So what do you do? You wait. Except you can not, in good conscience. And so you seek other public providers (more on that in a minute) and failing that, you go privately, if you can. And here comes the second piece of advice I'm prepared to give: ask your doctor to refer you to a private paediatrician, preferably one that is sensitive to the needs of families in your situation. If you don't have the money, borrow it from relatives or friends. If the paediatrician finds that your child has special needs, they will fill out a form for a disability allowance. It's only forty dollars a week, but it will offset the cost of the visit in a couple of months, and thereafter it will help you pay for things. You're not going to run out of extra expenses any time soon.

That's the easy part. Now you have to find somebody to help your child at preschool, at kindergarten and/or at home until the Early Intervention Team creaks into action. And here's where luck begins to tell: we live in a big city, we are involved with an excellent (public) primary school, we know people, including families with children on the spectrum. Class operates for us in more ways than one: it's not just that we can pay for the private assistance, but that we know whom and how to ask and we have certain expectations of institutions. Agencies that cite resource constraints don't get much sympathy from us: we know that the failure of state services to provide is the product of political decisions and rarely if ever of unavoidable circumstances. Should the centre create difficulties around the placement of our support person, we’d know how to raise our voice and how to remind them of their obligations. We are not easy people to deal with. We know that you cannot afford to be.

But in no way do we beat the system. On the contrary, by seeking private help we bail it out, prolong the state of permanent crisis that never quite results in total rupture. We should be sleeping on the Minister's doorstep. We should be organising and demanding change. But it is a hostage situation, and the hostage is our child. Thus the system enlists us, the middle class families and above, who will cough up and provide, and this will prolong the status quo for everybody else.

We know that we are privileged, yet we feel powerless. The wider social implications of our actions are incompatible with our stated goals. We have been privatised.


It has not been for want of knocking on every available door, although the public provisions around autism are notable for the staggering lack of coordination: sometimes you will be made to feel like a trailblazer, as if nobody had ever had the same needs as you. Autism New Zealand ought to be anybody’s first port of call, but even they struggle to keep up with the constant changes in personnel and criteria. So for instance we are told to approach the Needs Assessment and Service Co-ordination Service (or NASC – these people and their bloody acronyms) but discover that our daughter doesn’t qualify unless she poses severe behavioural challenges or she has been found to have a cognitive delay by the Child Development Team that at this point – remember – we’re not due to see for several more months. I speak on the phone to another agency that could be of some assistance to us, Tautoko, and I can tell that the person on the other end of the line is also trying to make me say that we struggle to cope with our child’s behaviour, but it is a box that she just doesn’t tick, at least not in the terms that are offered to me. And so the man tells me – in September of 2009 – that they will not get around to seeing her until February of 2011.

With any luck, she might be a different child by then. A more difficult one.

This last remark is not meant glibly: as the Autism Guideline plainly states, early diagnosis and support are crucial to avoid more complex, more invasive and more costly interventions later. This knowledge makes the time spent on our several waiting lists that much more distressing. But time does pass, because it’s what it’s good at: and so 2009 turns into 2010, and in spite of all those initial contacts and assessments the actual support that our child has received thus far, eight months into the process, has all been financed by us. But the good news is that nine teacher aide hours per week from the Early Intervention Team will kick in as soon as kindergarten comes back from the holiday, plus the time necessary to actually find the aide.

Along with some resolutions, 2010 brings more evaluations, more questions, and with far more of an edge to them. This is the real deal: an actual diagnosis, medium-term decisions about support entitlements that will make an enormous difference for our daughter’s access to education as she prepares to move into primary school. We have second-hand knowledge of the beast they call ORRS, but we’re due to meet it face to face. A lot will depend on the outcome.

But before we get to ORRS, we have to meet with the Child Development Team at Wellington Hospital, so they can tell us what we already know. It is a long meeting, and whilst we are used by now to discussing our daughter as if she wasn’t in the room, this time we are probed much more deeply, and expertly. There is nothing especially tactless about the interrogation, other than the unwelcoming room itself, other than the strain of having her there, for over two hours, wondering how she feels, what she does and doesn’t understand, what she will and won’t remember.

The alternative, to have determinations made without talking to us, or without seeing her, would be worse. But it’s especially difficult at times like this not to feel that your child is a problem, and that you may be at fault: for not having done enough, for having passed on the wrong genes. None of these thoughts have to be rational, let alone justified, to affect you. So while we answer the questions, many of which are unavoidably of an intimate nature, we feel that we are all being examined, the three of us, and we figure, Justine and I, that we are the fortunate ones, for we are intelligent and knowledgeable and resourceful, for we found ways and had the means to intervene. How will other families feel and fare in that room? Will they also pass muster?


One week later, when we are summoned again to the same room – this time without our daughter – they tell us out right: you’re doing all the right things, we have no recommendations for you. (They are pleased with us!) Oh, and yes, your daughter has autism. That phrase in the report is actually in block letters, and you could read a lot into that typographical choice if you were so inclined, about the need to label, its usefulness, and the fear of the label.

We share this ambivalence, although personally I prefer using the word autism than not, but when it comes to different institutions, it is a very sharply edged business. When the Ministry of Health uses the word autistic – and I’m not suggesting for a minute that it does so lightly – it doesn’t have to deal with the consequences; its job is more or less done. When the Ministry of Education is faced with the word autism, it means extensive interventions and costs and resources to be allocated over a potentially very long period of time. And so what Education does, is it discards the word, for it is unfair on the child, and besides it is a spectrum and moreover what we need to really focus on are the needs of the person, the whole person, not the label, see?

Thus we find – and even as I write this I can’t believe that we ever thought otherwise – that the entire process of the diagnosis was immaterial. The only thing that mattered all along was ORRS.

ORRS stands for Ongoing and Reviewable Resourcing Schemes, a name that was probably concocted by the same chap who came up with Needs Assessment and Service Co-ordination Service. Both denominations are elegantly deceptive, for neither the co-ordination service does any co-ordination, nor the resourcing scheme provides actual resources. Quite the contrary: the function of ORRS is to deny disabled children access to resources, therefore the right to an education. Successive governments – both Labour and National – have lied about this, telling us that the scheme wasn’t resource-based but rather needs-based, and sometimes even telling us that it was both things in the same sentence, as Dr. Cullen did in the 2008 budget:
This initiative, which is demand-driven, increases the number of students provided for by the Ongoing and Reviewable Resourcing Schemes (ORRS) from 6,700 students in 2007/08 to 6,950 students in 2008/09. (My emphasis.) 
It’s a sliding scale of need, see. And if you’re child 6,951, then it doesn’t really matter what your needs are or whether you fit the stated criteria: you miss out. The principle was captured quite beautifully by Tom Scott in this 1995 cartoon for The Evening Post sent to me by Hilary Stace. Things haven't changed a bit.


How it works, is that each child has to compete for one of the available slots. Think of it as the competition for a job, or the tender for a contract, where you have to write the curriculum and put together the portfolio that gives you the best chances of success. Because it is a competition, it makes perfect sense to place the burden of articulating and demonstrating the level of need entirely on the applicant. So for instance if we could go through simply by waving our daughter’s autism diagnosis and its extensive supporting report, then it would be unfair on the children without a diagnosis. (And I am quoting verbatim from an intelligent and compassionate professional involved in the process to whom evidently this seemed perfectly reasonable.)

No: we have to tell our daughter’s story, again, and in even more harrowing detail. To the education system, at this time, she is a problem, and nothing else. Where am I going to find words to convey to you how much it pains us to have to go along with this? I can not. But go along with it we must, for the alternative is that she won’t receive the support that she needs, and that doesn’t bear thinking about. So, with the invaluable guidance of her early intervention teachers, we select the criterion that best fits her profile, and we start writing, pretending not to have noticed the failsafe mechanism, the clause that they could use to deny us. It might as well have been written by Joseph Heller:
This criterion is not for students who, despite major difficulties with communication and/or social behaviour, can be engaged to participate in meaningful learning in the curriculum. 
What’s 'meaningful learning', and who decides? Clearly what we are talking about here is not the right to an education, but to some education.

But you cannot allow yourself to think about that. There is work to do. We enlist the help of all the people whom we have employed to work with our daughter, and of her psychologist (also private), as well as her teacher aide and early intervention staff. They all write thoughtfully and truthfully, as do we. Yet it is a betrayal: none of us see this wonderful little person like that, solely for the things she cannot do, for her impairments, for her inadequacies, for her failure to be like her peers. We see potential, intelligence, passions that if nurtured and allowed to develop could lead, yes, to meaningful learning. But they don’t fit the narrative, and the narrative is the only thing that matters at this time.

It takes thirty hours on average to put together one of these applications, under the expert guidance of the lead early intervention teacher, plus the time it takes to review it. You may want to think of the resources that it entails, all this gate keeping. It’s all money that could be spent elsewhere, quite aside from the pain and the distress that it causes. But we don’t care, not now: we just need an answer. We wait.


It is at this point that the story ceases to be our story, and becomes another family’s. Who is child 6,951? How are her needs different from our daughter’s? How will she be cared for? Will her parents have to sell the house to pay for her teacher aide? Will they have to move to a poorer area, therefore to a school with even fewer resources? Or are they already there, and is that in fact why they missed out? Here’s EJ Ryan in the Victoria University of Wellington Law Review:
The overwhelming issue with the high needs categories is that the narrow criteria mean that many students are not included within them. Both the school and the parents of a child with special educational needs must provide extensive written applications for ORRS. Any assessments of the child made in support of the application are paid for by the parents. The Wylie Report noted that just under half of the current applications succeed. Particularly worrying was the fact that the number of applications that failed from low-decile schools, and from Maori and Pacific Island students, was disproportionately high. This supported an observation that the success of the application was perhaps based more on an assessment of the written application, than on an examination of a child's needs. 

Ryan wrote this article in 2004. The Wylie report was commissioned in 2000. Tom Scott drew his cartoon in 1995. Has anything changed? It certainly doesn’t feel that way. The system still seems designed to respond to an arbitrarily low number of cases, and to favour implicitly the families that are wealthier, more articulate and capable of greater advocacy. Or, to put it more simply, it still is discriminatory and racist. For how long are we going to tolerate this?

But I’d lie if I said that our prevailing emotion was anger, or outrage: most of the time we are too tired for that. It’s only been sixteen months, but the stress of these constant negotiations has taken a steady toll. We hope that our friends understand that it’s why we don’t call as often as we used to, or why we don’t always return their messages. We are exhausted. And you will be too, as this post crawls towards its three thousandth word. I just need to make one final point.

There is an aspect that most people in our situation will mention, and it duly came up in Penny McKay’s excellent recent programme on special education for Radio New Zealand: that you are always supposed to be grateful for the support that you get. And we are, truly, I hope that everyone who has worked with our daughter knows that. But that expectation is another source of stress, and it is connected I think to the way our public institutions see us. To them, we don’t have rights, we have needs. By responding to our needs, the institutions acquire the right to appraise themselves of everything concerning our lives. Our recent dealings with NASC illustrated this quite sharply. Post-diagnosis, when we could finally access their service, it ought to have simply been a matter of lodging the Child Development Team’s report. It had the whole story, and our eligibility criteria. But no: they had to send somebody to our house, and we had to tell her the whole story, again, answer all those at times brutally intimate questions, and for what? Not to get a sensitive and tailored intervention based on that information, but to receive 71 dollars a month, twelve times a year, for one year, to help pay for some of the therapies that it is up to us to organise.

I felt, at that point, that they owned us: as I’m sure that the disabled and the unemployed and the sick are often made to feel. It’s the price you pay for having needs.








All the images except for the Tom Scott cartoon are scanned from the New Zealand Autism Spectrum Disorder Guideline.

Monday, September 6, 2010

Two.


(This was ready in advance of the earthquake in Christchurch, apropos of which I have nothing terribly relevant or important to say. That it was eerily similar in magnitude, depth and proximity to a large population centre to Haiti's, and a great deal stronger than L'Aquila's, underscores once again how man-made those catastrophes were, but we knew that. So I’ll direct your attention instead to this lovely post of Jolisa's and to Russell's analysis of the role of social media in making the facts on the ground known. I'll add more links throughout the week as they come to hand. EDIT: the thirteen things that Mike Dickison learnt from the quake, and Scott Hamilton's excellent political analysis of the response. EDIT 2: Emma time! EDIT 3: Harvest Bird on, amongst other things, having married McGiver. EDIT 4: Cheryl weighs in, and it's a wrap.)


So it's that time of the year again, when I celebrate another blog anniversary with a visit to the always wonderful DCM Book Fair. In another homage to tradition I'm also unveiling a new banner by Shirley Carran. It is time therefore to farewell Shirley's design for the twelve months just ended


Which had in turn replaced Bert Warter's artwork to which this blog owes its possibly perplexing and – if half-fumbled web searches are any indication – fittingly hard-to-remember title.


There's also a competition for a prize that few people would even want for those who stick around until the end of the post.

***

The big annual book fair down at the Queen's Wharf in Wellington is the only fundraising event for the Downtown Community Ministry, which does many good things for the city's poor, and this year it collected over 60,000 books and 2,000 CDs from city-wide donations over the course of several months.

We are fortunate to have a number of very good second-hand bookstores in Wellington, but charitable objectives aside you could in fact argue that the DCM Book Fair is a bad one: vast, indiscriminate, brimming ­alongside its many treasures with books, maps, brochures and assorted ephemera that no self-respecting shop owner would waste their shelf space and your browsing time for: objects not old enough to have become antiques, nor kitsch enough to appeal to hipsters, but filler, space-takers. Even the pricing ­­– two dollars per book on the Saturday, one dollar on the Sunday, with very few exceptions – is anathema to the craft of the vintage bookseller, which consists in the expert appraisal of the relative value of books. By levelling the worth of its holdings, the DCM Book Fair comes to bear an odd resemblance with giant online depositories such as Google Books, in which none of the entries are inherently more prominent or visible than the others. Except in this case there isn’t the sanctuary of a search function: just one very large room and the books laid out in broad thematic order on dozens of tables. It’s a place of too much knowledge, and sometimes I surprise myself thinking of how I navigate that space in terms of how I do the Web, and find metaphors that originated in print culture, like scanning and browsing, come back charged with their digital overlays of meaning.

I've discussed at length in last year's precursor to this post how the filler is in fact what I'm primarily interested in: the things that I couldn't possibly have been looking for, because I didn't know they existed except in very generic terms: chiefly, old self-help books and other containers of superseded knowledge.



On this front the pickings were possibly a little leaner than in years past, although I am delighted to have come across the 1000-page tome Science for the Citizen (1938), a brilliant companion to last year’s The Secret of Life.


I was already familiar with the next item, Alan Harrington’s The Immortalist, but I had to purchase the available copy on account of its wonderful cover, that it is instructive to compare with the last one the book was given before going out of print.


Vintage covers of books that are still in circulation are constant a source of delight, and number often amongst the most overtly hauntological finds (indeed I suspect that some of my friends at Found Objects would faint with pleasure at the Book Fair).


And in the old covers department, is the arc of any writer’s fortunes more splendidly captured than J.G. Ballard’s?

New frontiers in Ballardian criticism: using the cover of The Drought to test if your pen works.

There is always one book that is enough by itself to amply justify the time spent at the Fair. Two years ago, it was the 'Asian Edition'. Last year, it was About Dustmen. I think I’m going to remember this year’s expedition chiefly for this.


A lecture by chartered accountant Frederick S. Todman on the workings of the New York Stock Exchange, published in 1918 and revised in 1929, but still before the events of October 29. Wonderful.

It is on the front of my continuing and utterly un-systematic New Zealand education that this year’s Fair offered the greatest number of rewards, however. C.V. Smith’s 'humorous survey' of 1947.

From the chapter on the 40-hour week: ‘When it was first introduced, it came as a bombshell to bankers, lawyers and stockbrokers. Not understanding their position, they thought that their hours of work were being increased by ten hours a week.’

An American psychologist’s view, 1960.


W.B. Sutch’s always elusive Women with a Cause, that the Wellington City Library won’t lend and that the Auckland Teachers’ College kept for some time in the stacks and then opted to cull. (Their students’ loss was my gain.)


Other assorted feminist treasures that went straight to Justine’s shelf and finally nine, count ‘em, nine issues of New Zealand’s Heritage, the 1971 Paul Hamlyn encyclopaedia that reads like a magazine or even, dare I say it, a blog. I’m going to have a lot of fun with these.



Giveaway time. My most intensely faithful readers might recall that I had promised to include two Guareschi novels from last year’s loot in a giveaway that never eventuated – those books ended up finding a good home by way of a permanent loan. This year however I found Comrade Don Camillo, one of my favourite books in the series, which in the 1966 Penguin edition sports Guareschi’s own brilliant cover design, and I’m offloading it right away so I don’t forget.


I’m going to send the book to the first person who solves this riddle (opens in a new page), along with another book that will depend on where the winner is from. To a non-New Zealander I’d send John Clarke’s wonderful The Thoughts of Chairman Fred, whereas a local winner would receive a mystery prize (in that I haven’t thought about it yet). If nobody comes close to answering the riddle or in fact to being remotely bothered to try, I’ll declare Philip the winner, for he accrued five points in semi-random fashion back when I thought I was going to do this kind of thing a lot.

***

This time last year I ventured to suggest that perhaps writing, as Daniel Pennac said of reading, doesn’t take time, it makes time. I am twelve months closer to believing that it might just be true.

Year two. 48 posts, 895 comments – that’s a lot of words, and not all of them mine. My thanks to you all as always for taking the time to read or contribute: I appreciate that most sincerely. Further thanks to this blog’s wonderful resident poet, who in spite of being inconsiderate enough to have a baby missed but a handful of deadlines, and now as a Cantabrian is dealing not just with the demands of maternity but also with the vagaries of geology. We’re thinking of you all down there, our Christchurch friends – kia kaha, and stay safe.


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