Don't let “universal services” be turned into “safety nets”

One of the ways the political right beats the left is by being more effective at choosing the battleground of debate – by getting others to adopt their definition of what the debate is actually about.

When it comes to Medicare, unless the ALP, Greens and other centerists claim back the language, their defeat is inevitable: it may come in this budget (I hope not – I hope the ALP finds its courage down the back of the lounge), or in ten years, but it will come.

Here are a few articles written by relatively well-heeled journalists on all sides of the political spectrum.

“Joe Hockey's GST Ploy Jeopardises Safety Net” - Sydney Morning Herald

“Tony Abbot's Trust Deficit” – The Guardian

“Treasurer Hockey stresses culture of work” – The ABC

“Joe Hockey's Federal Budget Prediction: Lower Growth, MoreUnemployment” – Sydney Morning Herald

“Joe's Plan Makes Us Hostage to Fortune” – The Australian

“Australians Slugged $7 for Doctor Visits” – The Courier Mail

What these articles all have in common is that they cheerfully describe Medicare as a safety net – and many, many on the left also do so when they're defending it.

My cluestick: “universal” and “safety net” aren't the same thing.

“Safety net” means “we reserve a minimum and usually inadequate standard of care for the poor”.

“Universal” means “everybody”.

Two things happen when “universal” is ghettoed into “safety net”:

1. The definition of what should actually exist inside the safety net is in the gift of the powerful.

2. Because of (1), people will be marginalised.

The marginalisation won't, however, be the careless marginalisation that happens when lawyers define the mission of a charity (I've written about this here). It'll be a matter of deliberate policy: the government will pick winners and demonise losers as an exercise of power.

It's already on the agenda. If you don't believe me, read through the Commission of Audit report. It's all about picking winners and demonising losers.

There's another point to be made: narrowing what Medicare actually offers is also deliberately destructive: “this service is accessed by too few people, and is becoming expensive to deliver, so we are going to pass it over to the private sector”. The previous blog post I linked above provides an example of this in action.

By reducing the mission of Medicare, you reduce its efficiency and effectiveness at the edges. The edges get trimmed away – only to reveal the next edge, the next target. This isn't accident, it's strategy, with its aim being the dismantling of the public healthcare system.

Characterising Medicare as a “safety net” is an exercise in propaganda. It redefines the mission of Medicare in a way that is exclusively to the benefit of the radical right, because “safety net” and “universality” are exclusive. The same goes for things education, unemployment support, pensions and disability services.

Mainstream journalists – who approach the medicare debate from a standpoint of being well-paid and well-insured – adopt the language of “safety net” because they lack personal experience at the margins. Politicians of the right do so out of strategy; and politicians of the left do so because they feel powerless to drag the debate back onto their own battleground.

Often, battles of language are trivial, but the confinement of social rights into the “safety net” ghetto is an important battle that has to be fought, or the left will lose. 

A star and a compass

After nearly five years in the somewhat intense world of advanced medicine, you get a lot of experience of all levels of the training of medicos, from students dutifully trailing behind specialists, all the way to “I just got a really good posting, goodbye”.

In the middle of this there are a lot of medical registrars. A lot of them: we've had them in gastroenterology, cardiology, immunology, renal – not to mention the suffering and sleepless registrars that staff the emergency departments, and the harried, apologetic registrars in ICU.

Some seem to be merely meat in a sausage-machine of training, but very occasionally, from the patient side, you get to see the genius, the stand-outs that you know can do well, because.

Because they're more thorough than the rest.

Because they care more than the rest.

Because they know more than the rest.

Because they fear more than the rest.

It takes its toll.

You, the public-hospital registrar of yesterday's visit, you are suffering and we see it. You've got too many patients who will die before you get to replace “registrar” with “specialist”, but since it's your third return to the same place, Ms T and I suspect which specialty has caught your passion.

You're young – I don't do well at guessing age, but you're about 30 – and your hair is greying too fast.

Your face should be relatively unwrinkled, but you scowl at your own decisions and doubt your reassurances that things are going well. So it's not.

You try to cover your forehead with your hair, because you don't want us – the patients and their carers – to see how much you wrinkle your forehead when you're fretting about what will go wrong next.

We see this, because we've seen you when our lives were at their darkest.

You once hugged Ms T when you apologised that you couldn't do more.

You fret and frown and add another grey hair when choosing between an X-ray or a CAT-scan (one is less sensitive, the other has more radiation).

You worry and apologise and fret and hug, you think and calculate and worry some more, and it's makes you better and kinder and more loved than those who live their lives in a sausage machine.

You're going to do good, and with a little luck and opportunity, you will be great. But it's going to hurt.

You can't save everyone, and every death will hurt, because that's already the story in your eyes.

But there's this: there will be wins and lives saved and families preserved. Lovers will love, children will grow to adults, and their lives will be your reward.

Your care, your fanatical attention to detail, your shining intellect – one day, a leap of intuition and a guess that “we should check that” will mean someone will send you presents each year because they or someone they loved got a life they didn't expect.

Treasure that, and make that your star and compass.

Ms T and I know that it's more than likely, one day, that someone will have to let a hammer fall. Know that if it's you that pronounces the dread words, says “I'm sorry, but ...”

If someone has to say it to us, we'd not just forgive you if it were you, we'd love you for taking the burden of saying it. We'll still know that we were lucky to know you, because we know you'll do good in the world.

But it's a burden to you, and we know it. We hope the burden doesn't break you, because in your future, the patients you save will love you for it.

We do. 

Bravery: Friends are better than "narratives"

When friends talk of strength and bravery in the face of illness, it's a blessing, even though Ms T and I aren't brave.

Well, perhaps we are. Perhaps I am. I try. I get there sometimes.

There are the other times, though. The times I'm not brave: wishing things were otherwise at 2am, wanting a life less lonely, hoping the latest lump is nothing (it was nothing, this time), lost in the concentric circles of cascading cares.

When an old friend like Sarah (not her real name and not the same one as either of the other two) has a longish public conversation with me, spending most of it with at least one arm around me and often both, and talks of bravery, it's a support and a blessing. I know Sarah's battles – with cancer, a long time ago – her recovery, and she knows ours, and when she blesses our courage, it's in the context of a friendship of more than twenty years. Were I to break in the face of the enemy, falter in my resolve, cry in a corner, whatever: Sarah won't despise me for it, because she's a friend.

There's another bravery out there, and it's not a support, it's a burden.

It's the bravery not of a friend's arms, but of a pop-culture narrative. The pop-culture bravery, the “plucky survivor” narrative, given extra human-interest colour by the “never-say-die” carer who juggled everything, held it all together, smiling at the five-year mark as they embark on a new journey. Hooray.

Behind the cheery smiles and the media-constructed narrative are imperatives that have hearts of flint and do not forgive: “you have to believe you can win”, “you have to keep smiling”, “you have to be strong”.

In this world, dignity is a demand, rather than the real-world's desperate fight to look normal when you're bedevilled and in turmoil.

I can't be perfect or strong or brave, and I'm not even the one who's sick here.

The burden of perfection, living within the narrative, is imposed by people who lift not a finger to help – the TV producer who sees the perfect tear-jerker story in a still-youngish, still-photogenic Dick and Jane; the inspirational celebrity whose story is written in easy cliché by a lazy journalist (with a link for donations to a foundation at the end); today's success story who is mourned a decade hence with not even a nod to the misery that accompanied the end.

I'm not that brave, really I'm not. I can't live a narrative, only a reality. My imperfections abound and rebuke me at two in the morning.

But I have friends, and I hold them closer than the media narrative. Friends don't merely talk of strength and bravery: they are the means and the arms and the muscles and the love. And while the cold screen in the corner of the living-room chatters about a bravery that doesn't exist in real life, I'll be a loving coward and hope it's good enough.

If I can merely be good enough for Ms T and the loving friends that hold me and care, it's enough.  

If you applaud “high premiums for smokers”, you're an idiot

Oh well, I may as well stay on-mission for now.

An insidious suggestion from the Commission of Audit is that health insurers be able to abandon community rating, and put a loading on people with elevated risks, citing smoking and obesity as examples.

That not only sounds reasonable, it's the sort of thing that will get a lot of endorsement from people who are incapable of thinking through the aim of the proposal – which, like pretty much all the Commission of Audit proposals regarding health (and the states and taxation), is directed towards an end to the Evil of Universality wherever it may lurk.

“Sure!” people will cry. “Let smokers pay more!”

Let's leave the logistical issue of proving, at a given moment, that someone's telling the truth when they fill out an insurance form, ticking the box “non-smoker”. That's a trifle compared to the naked evil of the commission's drive to end universality.

If you okay one common risk factor to be a premium loading, you okay all of them. Good, you've inflicted a punishment on someone you detest: can you guarantee that you have zero lifestyle choices an actuary can't sling a loading onto? If you think you're okay, you don't know actuaries.

I usually hate “slippery slope” arguments, but it's in play here. Once the insurers hire enough pure math graduates, remove their soul and personality, and turn them into actuaries, it won't end with “let's slug the smokers and the fatties”.

There will be an endless drive to locate “risk factors” and price them into health insurance – as there is over in America, the ideological model of what happens when evil minds command public policy.

Once the easy “risk factors” have been found, there will be an endless actuarial drive to slice the sausage more finely. If you don't believe me, take a look at all the inventions health funds have created to attract members.

In the Australia of “community rating”, health funds don't introduce fringe benefits because they like you: they judge – their actuaries judge – the cost of a token “alternative therapist” is trivial compared to the new customers' premiums.

The actuaries that say “okay, include a Reiki master” in their benefits are the ones that will, within a nanosecond, get redeployed to identify every possible “risk factor” and train newcomers to do the same, so they can create a product with a thousand boxes to tick before you get told that your premium is something you can't afford.

And when you've been turned into “insurable”, “insurable at a premium”, or “forget it”, you'll find yourself turned out into the Commission of Audit's idealised model of a private health system, in which insurers will argue over the treatment they'll approve, instead of – as now – getting the treatment you need on Medicare.

Actuaries look boring: in a health system, they're efficient murderers whose hands are never stained by blood.

This is the purest evil that a mind of malice could conceive. People will die, and if you don't believe it, look only at the graphs that Greg Jericho displays in this article. America – the country whose template is admired only by people like the commission, who have no money worries – can't match Australia's lifespan.

Why is that?

Because people in America die rather than turning their own families out of their homes to get treatment. 

Because people in America can get turned away from a hospital without the right insurance.

Because the toxic ideologues that think shit can be turned into gold if it's processed by the right buzzwords actually like America that way.

Because the kinds of people that resent sharing a taxi with its last occupants so much they create a loophole-as-a-service “app” like Uber that looks wonderful until people die at the hands of loophole-exploiting drivers just do not understand what's good about a universal service.

America is a bad model for everything if you're not rich enough to ignore what's wrong. The same country that will train ideologues to chant “universal healthcare is socialism” will whine like babies that their once-universal Internet service is now modelled on their nasty healthcare model: dying or downloading, America wants you to pay for the fast lane.

That's not Australia, nor is it rational, fair, or an Australia I want.

The Commission of Corruption

Oh, you have to be kidding.

In NSW, corruption hearings in the ICAC haven't just claimed a decent bag of NSW politicians: federal politicians have also had their careers dented by being named, fundraisers have been thoroughly traduced, and …

That same party wants to create, at a federal level, corruption honeypots of unimaginable vastness, courtesy of the report of its hand-picked commission of audit.

Apart from its nasty attack on the poor, the sick, the unemployed, the student, and the scientist; apart from its naked embrace of failed ideologies as the basis for policy; apart from its utterly risible inclusion of Institute of Public Affairs wish-list policies like a legislated cap on tax take as a proportion of GDP …

…Apart from all this, the thread of privatisation runs throughout the document, and not only in the selloffs of the Snowy hydro scheme (an IPA idea), Australia Post (also an IPA idea), the NBN (already planned), the Mint and so on. It's also in the privatisation of service delivery in health, disability services, and so on.

You'd have to be a first-rate idiot, blind and ignorant of what's been happening, to think that self-interest appears nowhere in an entire political party when an unimaginably vast money-pot is opened up, after it's already been exposed by the NSW ICAC.

Buy shares in brown paper bag manufacturers, people, because there's going to be a shortage. 

Venality is written large in the Commission of Audit's recommendations, far beyond the list of privatisations: putting NDIS out to contract, outsourcing visa processing and passport production, outsourcing the Department of Human Services' payment system, and so on.

The Commission's aims are so naked it's an embarrassment: 

• Cut taxes for the rich
• Cut services for the rest
• Pour money into the private sector in the name of efficiency

There are recruits and cannon-fodder, as there always are: dupes who believe passionately in an ideology and can't feel the corporate hand at their back. And there are knaves, who pretend to believe in the ideology but are in it for the honeypot.

We know the knaves exist. ICAC has proven it. It's now down to us: if we don't stop them, they will feed on the misery of the sick, the degradation of the disabled, the starvation of the poor, the theft of services and society to enrich the choice few that are already rich enough and large enough to bid for the contracts.

An odious proposal: privatising public health

Here's a few items whose juxtaposition is disturbing to me.

The first, discussed in detail in this earlier post, is that the private charity that runs Lifehouse at RPA excludes “non-malignant” patients from chemotherapy services, even though these were treated at its predecessor facility, the Sydney Cancer Centre.

The second is that Barry O'Farrell, while not attracting an accusation of corrupt conduct against himself, was so immersed in an environment in which wildly extravagant gifts were normal that he didn't send back a bottle of 1959 Grange, even though it came from a lobbyist who later sought favours from O'Farrell's government.

The third is this article in the Sydney Morning Herald, in which the new premier, who is known to have had contact with the same lobbyist, Nick Di Girolamo, wants to see NSW public hospitals operated as public-private partnerships.

Mike Baird, you have to be kidding.

The stench of lobbyist interests around privatisation is now ineradicable: Barry O'Farrell was presumed to be too straightforward and honourable to stoop to any kind of corruption, yet he fell.

Should the new premier seek to splash around contracts to put state government services under private management, he'll be putting a vast honeypot in front of private lobbies. It's doubtful, after the Chateau de de Honnête Homme incident, that any process could pass the “sniff test” in front of the citizens of NSW.

Who is going to believe that a lobbyist contacting the government about hospital privatisation is doing so innocently, when Barry the Upright couldn't smell a rat over the bouquet of a rare wine?

Who is going to believe that a “study tour” of US and UK private hospitals is anything other than a junket?

Who is going to believe that politicians won't accept board posts as their post-parliamentary payoff for handing public services into private hands?

After the fact will be too late. By the time the stench of favours-for-sale ejects a government, the damage will be done. Patients will be marginalised because that's what happens when the “mission” of a hospital is defined by private contract. The state will receive its health services with a profit margin on top, because the private providers need their profit margin.

The contracts will be drawn up by toxic lawyers whose brief from private providers will be to define their obligations as narrowly as possible and their financial entitlements as widely as possible.

As Mike Carlton writes, “the Liberal Party state machine is rotten with spivs and shonks, touts and urgers, spongers and leeches, bludgers and layabouts, shysters and shifters, corridor whisperers and sleeve-tuggers. It is infested by the buyers and sellers of power and influence. If it never plumbed the dark depths to which Edward Moses Obeid and his cronies dragged the ALP, it was still sloshing around in the same sewer.”

There's nothing about the idea of letting the Liberal Party's spiv mates get their tainted claws onto the public health system that isn't entirely odious. And afterwards will be too late.

Undermining healthcare universality, with the best of intentions

It's been a while since I posted anything, and this post is difficult and long – please forgive me. I'm watching popular causes white-anting the universal health system in Australia, and it bothers me.

The carve-outs

The universality of Australia's health system has been under attack consistently since the Whitlam government first attempted to create a universal system in the 1970s.

Some of those attacks are obvious: every Liberal government since Whitlam lost office has sought to erode it in some way, usually by making it less “universal”. The latest co-payment idea is just one example; a long time ago now, John Howard thought it was reasonable to try to get everybody including pensioners to fork out at least $500 of their own money each year on treatments.

I'd like to talk about a different attack on the practice of universal healthcare in Australia, and I do so knowing that some of what I'm going to say will be more offensive than an expletive-riddled rant.

There are many well-meaning people in Australia whose mission – often called by that very word – is to carve out niches from the universal healthcare system. The problem as I see it is that carve-outs marginalise someone.

Here's a relatively uncontroversial example: the Victorian hospitals that are operated under contract by a Catholic church charity, and as a result, do not offer abortions. I need not enter the abortion pro-or-anti debate to make two observations:

1. Those seeking abortions are marginalised to the extent that they need to go somewhere else; and
2. This is a need that would not arise if the charities involved had not carved out part of the universal health system.

Chemotherapy and cancer charities

Now, let me put forward the case that's closer to home. After a lot of fund-raising and lobbying, and with considerable government support, the Lifehouse charity – established to honour Chris O'Brien – opened its Lifehouse at RPA cancer facility.

Here's the Lifehouse mission: “improve the quality of life of cancer patients, carers and their families by advancing the understanding, diagnosis, treatment, cure and prevention of the disease”, including “an ambitious plan to transform cancer care, by creating an integrated and patient-focussed centre of excellence.”

And it's a lovely place that replaces the old and (formerly) cramped Sydney Cancer Centre at Gloucester House. And it doesn't treat non-malignant patients such as my wife – for now, they're back at Gloucester House, the immunology patients and the haematology patients. The facility looks not long for this world, for reasons I'll discuss in a minute.

It's an odd situation: the building was mostly paid for by government; the land is provided at a zero-cost lease by the government; public patients are paid on a fee-for-service basis by government. Yet patients that are best served by a specialist chemo suite are excluded because they didn't fit the mission.

Malice is unnecessary to explain this, I reluctantly concede. It's much easier to understand thus:

1. Visionary (and others) conceives vision and reaches a milestone at which negotiations can begin;
2. Finding that negotiating with governments requires experts, experts are brought in. Including lawyers, who are apt to take broad mission statements, and pettifog them into the narrowest possible semantic pit;
3. People outside the mission were simply left behind.

Even in an absence of malice, however, the effect is real – and isn't merely reflected in the inconvenience of a few dozen patients missing out on the glass tower and “patient focussed” care.

The reason those patients, including my wife, were treated at the Gloucester House was that it pulled together a critical mass of expertise and equipment. They were beneficiaries, if you will, of a universal system that provided:

1. Specialists overseeing the chemotherapy (you don't blithely say “five hundred mills of cyclophosphamide for the patient in Bed 12).
2. Nurses who work in pairs (cross-signing each others' work to make sure that the right stuff is being given to the right patient, in the right order).
3. Those nurses have to regularly re-certify to handle cytotoxins.
4. A pharmacy dispensing the drugs.
5. And that's just the stuff I know about.

From a financial point of view, this simply isn't viable: there are too few patients for a hospital's budget to support a daily compliment of five nurses (I checked with the head nurse at Ms T's last visit), a doctor in charge, a pharmacist …

Which is why I expect Gloucester House to be closed, and therein lies a problem for the patients that remain. Ignoring whether (say) the immunology clinic at RPA is kitted up to deal with cytotoxic chemo, it's only got a handful of beds and gets pretty crowded on a busy day.

It doesn't take any great stretch of the imagination to ask what other carve-outs have the same impacts: how many treatments in the public system are put in difficulty because the bulk of a service's patient cohort has been appropriated by a private charity?

Each time that happens – and there are plenty of charities to choose from – the universal system is white-anted in a way that has nothing to do with “means testing”, “wealthy individuals rorting the system” or “co-payments”. Even a wealthy patient requiring immunological chemotherapy can only get it if a suitable facility is available.

The value of universality

I believe in universality, because to me, it's not merely the financial argument that reductionists believe it to be. Australia has been dragged to the right by thirty years of the Liberal party calling Medicare a “safety net” – something that has crept so insidiously into the language that journalists use the expression without thinking about it.

It's my contention here that “universality” has a second meaning: that if a patient requires a particular therapy, the availability and quality of care should not depend on which specific condition requires treatment.

The challenge with this discussion is that cancer charities are hugely admired and expertly marketed, on the premise that their patients are the ones left behind.

Cancer remains a terrifying and all-too-often fatal disease, and because as a whole it's quite common, everybody has an experience, an anecdote, or a reasonable fear.

Let's set this down with data. Cancer Australia puts the incidence of all cancer types at 583.5 cases per 100,000 men and 404.2 cases per 100,000 women.

According to Orphanet, the global prevalence of all vasculitis types is between 1 and 9 per 100,000. Ms T's specific presentation isn't described at Orphanet because it doesn't seem to have a name, she's on the rare end of an already rare disease.

If you want to raise charity dollars, you'll get a lot further with cancer than with vasculitis.

By virtue of being well-heeled, the largest cancer charities are very good at fighting off boarders. Ever since Good Weekend published its “Cancer Wars” there's been a flurry of rebuttals about whether any particular cancer's research should be considered “over-funded”.

I'm not qualified to enter that debate, but when a largely government-funded facility can find room for Reiki, Qi Gong and reflexology, but not for a handful of chemo patients, discussions about money just don't pass my personal sniff-test.

Universality doesn't mean quack medicine for all. It's an aspiration that nobody gets left behind - even if nobody heard of your disease until Harold Ramis died of a presentation of it, and it was quickly forgotten.

Cherry picking – not science, but quotes

Screaming loony climate conspiracists (I will not dignify them as “sceptic”) are famous for cherry-picking data, but we forget that they also cherry pick people. Let one phrase out of a hundred sound like a prediction you can prove wrong, and they'll roll it out to prove you were wrong.

The SLCCs – pronounce it “slacks” if you like – have been on and on and on about the idea that Tim Flannery predicted unending drought forever in this interview with the ABC's Maxine McKew, which is the cherry-pick of cherry-picks.

Hence if Sydney gets a thunderstorm in March, you can guarantee that the editorial cannon fodder that are proud to fight on behalf of rich people that despise them will take it as proof that Flannery was wrong.

To save you from tl;dr, I'm going to parse the interview.

1. Are weather patterns changing?

Flannery's answer: changes to wind patterns and the tropics moving south have changed rainfall in south-eastern Australia. He didn't say “every year will be a drought year” in answering the first question. Nothing he said answering McKew's first question is contradicted by events since.

2. Is it more severe in eastern Australia?

Flannery: yes. “Something will need to change” to fill the Warragamba. Something did change, a flip in the Southern Oscillation. Nothing he said to McKew's second question is contradicted by events since.

3. You can't be certain?

Flannery agrees. He says he thinks the science is pointing in the other direction. Nothing he said to McKew's third question is contradicted by events since.

The next question and answer are given verbatim with emphasis.

MAXINE McKEW: So does that mean, really, we're faced with - if that's right - back-to-back droughts and continuing thirsty cities?

TIM FLANNERY: Well, you can't predict the future; that's one of the things that you learn fairly early on, but if I could just say, the general patterns that we're seeing in the global circulation models - and these are very sophisticated computer tools, really, for looking at climate shift - are saying the same sort of thing that we're actually seeing on the ground. So when the models start confirming what you're observing on the ground, then there's some fairly strong basis for believing that we're understanding what's causing these weather shifts and these rainfall declines, and they do seem to be of a permanent nature. I don't think it's just a cycle. I'd love to be wrong, but I think the science is pointing in the other direction.

So – every aspect of that answer was qualified: Flannery didn't make an absolute prediction. He was doing his job, trying to explain the science – including the uncertainty. Nothing he said to McKew's fourth question is contradicted by events since.

5. It will continue, and cities will be thirsty?

Flannery said “that looks to be the case”. Nothing he said to McKew's fifth question is contradicted by events since.

6. What's the worst-case?

Note: this is asking not “what will happen?” but “what's the worst that might happen?”

Flannery: There are quite severe problems if current trends continue. Nothing he said to McKew's sixth question is contradicted by events since.

7. Is drought preparation worthwile?

Flannery: Yes, “even if you think there's only a 10 per cent chance that this rainfall deficit's going to continue for another few years”. Nothing he said to McKew's seventh question is contradicted by events since.

8. What about Western Australia?

Flannery: “Yet to be seen, yet to be determined”. Nothing he said to McKew's eighth question is contradicted by events since.

9. South Australia and Victoria?

Flannery: Adelaide might have water quality problems. Melbourne is vulnerable to water deficits. Nothing he said to McKew's ninth question is contradicted by events since.

At this point, the discussion diverts to power and away from drought.

Hang on. In the nine questions about climate and drought, Tim Flannery said absolutely nothing that has been contradicted by events.

In other words, if your a slacker – a screaming loony climate conspiracist – like say Chris Kenny, the only way you can say one thunderstorm fits: “Don't think this is what Flannery meant when he said "..Sydney will be facing extreme difficulties with water.."”

In fact, if you think one thunderstorm disproves climate science, you're unfit to comment. Really. It's like a movie advertiser citing the word “unbelievable” in the advertisement, when the rest of the phrase was “rubbish”. 

 

A speech is not a story just because it's a speech

Really, it's too much. As in, Officially Too Much. The toad-eating supineness of the Australian tech press has me sick to the gullet.

Ever since the mid-1990s, nearly every tech journalist in the world has coveted both the credibility and the pay packet of the Real Business Journalist. See, you can take any press-ganged loser from the tech press, slide them into a job with (say) the Australian Financial Review, and effectively double their income.

A douche with a tech masthead is one-half a douche in business media. That's the cold equation that makes the tech press wank and dribble to prove their worth in front of suits, all the world over.

And it's really, really easy to make a tech journalist make them think they're AFR-fodder: expose them to suits.

Get a tech journalist in front of a speech by a CEO – or even better, to the extent of “do you need a towel sir?”, an interview with a CEO – and you have a stenographer.

Drop on a lunch with free booze and they'll use the table-napkin in place of the towel.

As far as I can see from what I've read from the speech Telstra's CEO, David Thodey, gave today, he said nothing remarkable. He delivered a boilerplate piece that had been written by one hand, PR-tested by another, market-tested by another, and lawyered by another. Four hands on one wank, which should say something but probably doesn't.

It's like a cornflake, really: telling the nutritional value between the speech and the paper it was written on would get you down to quantum physics.

But journalists present at the speech have things to prove: (1) it's worth my absence from the office; (2) I'm a journalist who can report a speech; and (3) I can extract nourishment out of the cardboard, if need be.

Thodey. Said. Nothing.

Nothing new, nothing of note, nothing of value, nothing that wouldn't worry some investors, nothing that wouldn't make some market smart-alecks think they had an inside run on some kind of information.

Because that, dear media, is his job. Never, ever do anything but reassure the investors.

Really: if David Thodey says “Telstra wants to be more intimate with its customers” – the only aspect worth reporting is that it's a statement of such visceral creepiness that you'd bloody sign on with Vodafone to avoid it.

If he says he's going to “protect shareholder value”, it's both his obligation and a repetition of the same chorus he's sung throughout his whole incumbency.

He said “digital first”? In case you idiots weren't watching, the entire Telstra network went digital while you were anticipating your first date. Like, that was 1990s news kiddies.

“The customer is number one?” – I've never known of a Telstra CEO who didn't manage some variation on that theme. And my history of Telstra goes back to the late 1980s when it was still “Telecom”.

I'm sick utterly to my epiglottis with the idea that “a speech is a story merely because it was given”. What, the CEO didn't fall over on the stairs, declare himself a communist, come out in front of an audience, or grope the nearest biped before he came on stage? He just stood behind a microphone and read a script?

That's a speech. It's not a story. Save me.

Dear supermarket shoppers …

Dear supermarket shoppers,

The reason my wife moves slowly is that she's sick. We're really sorry for the frustration it causes you, that you may have to either break your stride or change direction for a second.

The reason she suffers brief confusion is that her illness carried with it a little bit of brain damage. So she may, on occasion, take longer to choose a product at a shelf than it would take you. Again, we're sorry.

The reason I'm protective of her, and put my hand between your trolley or basket and her back, is that it takes very little to break her bones.

Your impatience does not give you license to shove her with your trolley, as has happened. Nor to poke her with your basket. Nor, because you're a six-footer with an attitude problem, to use your height and weight against her.

Lumbar 3 and 4 have already been fractured by a shopping trolley; I'm not jumping at shadows here.

What confuses me most of all is how much hostility is offered. Ms T didn't jump your queue or speak rudely to you. All that Ms T does is move slowly, and sometimes, take a moment longer to choose an item from the shelf.

If we get a passive-aggressive “excuse me” as you reach past her face, that's tolerable (albeit rude). But it goes far beyond that: there are many, many people who are enraged by the sight of someone moving slowly near them, and want to push them, prod them, punish them for frailty.

Back in December, I put my hand between an oncoming trolley and Ms T's back. I didn't speak, nor did I actually look at the person pushing the trolley: I simply saw it about to collide, and prevented the collision. For this, I received a torrent of abuse.

Why? What drives a successful and healthy thirty- or forty-something, most usually a man, to regard someone moving slowly somewhere within his field of vision as an affront?

That, I can't answer. But when I see people falling for the idea that the disability pension (which we don't receive) somehow encourages scroungers, and then I see them in the supermarket, I weep for the creeping nastiness that is poisoning Australia's society.

The vasculitis primer

In most of the articles I've seen and heard today, Harold Ramis dies of a rare disease, auto-immune vasculitis (correct) – and journalists have shown little curiousity to explain it.

I'm not a doctor, but since my wife, Ms T to you, suffers from auto-immune vasculitis, I thought I'd set down a brief explainer; I haven't seen many media outlets bothering.

We never saw it coming. Recently, she pointed out that in the January before the disease took hold, she managed 13 bushwalks in 30 days – all of them in the 5-15 km range, all rated “medium” or “hard”. Within 12 weeks of that glorious time, she was 32 kg, unable to eat or walk any distance, and (as it turned out) toxemic. Her once-d-cups were replaced by ribs.

What turned out to be auto-immune vasculitis had closed her celiac artery; this caused liver failure, which was manifest in stomach ulcers of horrifying severity.

The rest of the toll of the vasculitis, before it was discovered, was: a 95 per cent occlusion of her right carotid artery (with a thankful growth of “collaterals” that have actually kept her alive); the anterior communicating artery (in the head) doesn't show up on scans; one renal artery; one brachial artery in one arm, and a radial artery in the other.

The proximate cause is that the immune system rejects the blood vessels and attacks them. The resulting inflammation closes the vessels; and once closed, they don't come back. A vein taken from her leg keeps Ms T alive by feeding her liver; the others are gone.

The ultimate cause - what sends the immune system on a kill-its-host mission? - is unknown. Here's an observation: since 2000 the National Health and Medical Research Council has spent $86 million on quack medicines, and sod-all on auto-immune vasculitis.

And those who have read our travails over the years also know that in a serious case, the immune system has to be brutally suppressed. If corticosteroids don't work, the “gold standard” therapy is cyclophosphamide.

Now, chemotherapy has been the subject of a huge amount of research over the years, with two aims in mind: make it more directed to the disease it's treating, and reduce the toxicity of the side-effects.

Which has improved both the effectiveness of treatment and the quality of life for cancer sufferers.

Cyclophosphamide isn't one of the new, kinder drugs. It's a nasty, nasty piece of work. Developed in 1954, it's only a couple of generations away from mustard gas.

That's because this is a rare disease. If USA Today got things straight, Harold Ramis' presentation was that the vasculitis attacked the blood vessels feeding nerves, which Ms T believes would be even worse than her own suffering.

Prognosis? We hope that the cyclo dose doesn't kill, because without it, the vasculitis will.

Nuance dies when Internet anonymity is debated

If you knew of the Internet before commercial ISPs existed, you were almost certainly connected through a university. The typical (say) pre-1989 Internet user would be a member of a university (therefore known to the systems administrator), connected through a serial terminal to something like a DEC VAX that acted as the university's node.

(I remember the great excitement with which a university systems administrator showed off something to me, in early 1990: he showed a document directory on a computer in America! That demo was all that he was willing to show, since the teeny-tiny 56 Kbps connection to America (I think) was supposed to be doing serious stuff.)

In that kind of environment, and given the fair chance that any Internet user was known to a fair circle of other users … anonymity was at best an ambiguous concept. At that stage, it meant at best “someone too distant from me to know or care who I am”.

As a long-time member of one of Australia's oldest Internet mailing lists, Link at the ANU, I can attest to a lively debate in the 1990s, along these lines: “Is the emerging trend towards anonymity a good or a bad thing?”

It appears that Link's archives don't reach that far back, but one of its members, academic Dr Roger Clarke, considered anonymity to be an active debate in 1996, when he set down this paper: http://www.rogerclarke.com/DV/AnonPsPol.html

Anonymity was not something built into the Internet from the start. It was a set of social behaviours that emerged later. And it's always been a topic that aroused opposing opinions for and against.

Right now, anonymity is back on the table, mostly courtesy of abusive campaigns that seek to silence the voices of science, political dissent – and quite often, women. Hence when Julia Baird writes an article like this, she cops insults for pretty much one paragraph:

"Surely much of this could be solved if Twitter insisted people use their real names, as Facebook tries to do. Why allow the violent and cowardly to hide?"

(I disagree with this, by the way, but it's not all she had to say. Nor will I reprise the abuse she copped).

Internet anonymity is a work in progress, people. 

It took years for people to think the Internet was a place where anonymity was possible (the famous “On the Internet, nobody knows you're a dog” cartoon, in 1993, documented the start of the debate, not its end). In more than 20 years, a consensus hasn't yet been reached.

It's disingenuous to pretend that there ever has been a consensus surrounding Internet anonymity.

It would be nice to have a mature consensus emerge – but that requires debate.

A legitimate component of that debate is: how to deal with chronic abusers of anonymity?

A couple of more points and I'm done.

1. While not a survey sample, in my timeline, only men took an abusive attitude to Julia Baird. Well done, gents, now go and knock your heads on the table until the dimwit falls out.

2. In a twenty-paragraph article, Julia mentioned a “real names” policy in one par, near the end. Rising up in a spitting fury over that one detail … well, it suggests to me that you're uncomfortable with dealing with everything else she had to say.

3. What of the target's freedom of speech? In what way does a general freedom to troll outrank someone's right to publish under their own name?

Today, protesters standing up in their own skin are getting shot in Venezuela; for them, anonymity is moot.

The sneers of the savvy don't help

If you didn't notice, Twitter got enthusiastic about a small show of solidarity for SPC Ardmona. In spite of various contradictions, the #SPCSunday hashtag took off.

Punters posted pics - “here's what I bought” or “here's what we made”, others posted recipies.

Beneath, however, there was the sneering undercurrent from those more concerned with “savviness” than enthusiasm. They boiled down to:

1. I don't like the product anyhow, and Italian tomatoes are better.

2. You bought the product from Woolworths or Coles, and they're part of the problem.

3. You do know that SPC Ardmona is part of Coca-Cola Amatil, don't you?*

To the last two, I offer no argument; to the first, I'll just remark that you might want to run “Italy tomato mafia contamination” into your search engine and get back to me later.

The objections boil down to “if you want to change the world, you're doing it wrong”.

Yes: there is a obvious contradiction involved in going to Woolworths or Coles, buying a product from a Coca-Cola subsidiary, posting the results on a US-owned social media platform – all in a gesture of solidarity for farmers and workers in the Goulburn Valley.

I'd even bet that a fair number of people who ran with the #SPCSunday hashtag are actually smart enough to perceive the irony.

But ahh, the savvy: a habit of thought that transcends notions of right-or-left, because it's about the dull, grey, humourless gaze-down-the-nose at the folly of the masses. It's how I imagine a Catalan knight may once have looked at peasants having fun.

It's just another condescension, “shut up and leave the adults to talk.”

I address myself now to the savvy of the left: just how well did your strategy work in, oh, the 2013 Federal election? “Miserable failure” is how I'd describe it.

There is a fairly general agreement that “voter disengagement” is worth worrying about.

But it's not “voter disengagement” that's the problem – not directly. It's people disengagement. Get people interested, excited, and by the way having fun, and I'd guess it's a damn sight easier to bring their votes along with them.

What happens when the savvy see people engaged, interested, excited, and having fun? They put on the po-faced frown of the expert: “you're doing it wrong.”

No, we're not. You are. The savvy is the stealer of the soul of politics, the enemy of engagement, the excluder of the outsider.

During England's catastrophic Ashes series of 2013, the incomparable Kerry O'Keeffe, a fine analyst of the game, looked at the English high-performance coaching and risible dietary requirements, and lumped it under the heading “the one-percenters”.

His argument was that the Australian coach, Darren Lehmann, took a low-performing team and focussed on bowling, batting, and fielding. Only someone at the very top of their game, he said, had the luxury of focussing on extracting an extra one-percent of performance by exotic practises. England coach Andy Flower, he believed, was working on the one-percent of performance when the team was having trouble with the basics.

To the savvy of the left, I say this: your research and focus groups – the one-percenters – are no use to you right now. You need the basics: getting people interested, excited, having fun.

Sneering at an obvious success doesn't mark you down as intelligent, knowledgable or knowing. 

*It's been pointed out to me that CCA is majority locally-owned: how much difference this makes, I will leave to the reader. 

You had one job, Australia, and you fluffed it

I have to say it again?

The short version is that my wife, Ms T to those who know us not and those who know us know her name, is sick. Without a high-profile fund-raising disease to provide support, our entire experience of critical illness is of the public system.

And while I complain about details, the key facts are: she's still alive, and we're not broke.

Over the last four years, she's spent about five months in hospital, had one very major surgery plus about ten minor procedures (including removal of two tumours that were side-effects of her treatments), run into her third year of immune-suppressing chemotherapy, vast amounts of various medications, and right now, pain clinic access to try and eliminate her dependency on synthetic opioids.

A US friend of mine tracked things early on, but he gave up when her putative American healthcare bill passed the million-dollar-mark.

But the happy-clappers of prosperity doctrine really hate things like Medicare. It's a direct challenge to their fundamental doctrine: if you're poor, it's because God doesn't love you, and if you're poor because of disease, it's because you have personally and individually offended God and are being punished.

Which is a religious stance that suits the most atheistic of economic schools – the hard market fundamentalists – just fine, because they detest government spending as a matter of principle.

And it's created a most toxic and potent combination that's infecting Australia from its spiritual home in America, and every damn government institution is under attack. Yes, there's SPC Ardmona and the sickening support for mining billionaires and the ABC and SBS, education funding and disability funding …

But my personal angle is personal, okay? I can and do care about the other things, but I write about what I know.

In America, Ms T and I would be yet another case of medical bankruptcy. Instead, I have both an employer and a small business, one son has a university record that makes me swell with pride and the other is about to enter the workforce. And we didn't have to sell everything, retreat to a trailer park, declare bankruptcy, or seek income support from the government.

And right now, the prognosis for Ms T is better than it's been since 2010, whereas under the American system, I'd have scattered petals on her coffin long ago.

You had one job, electorate of Australia, and you did it wrong. With any number of people warning you that gimlet-eyed ideologues wanted power and would abuse it from Day One, you decided that “an Abbott government couldn't be that bad”.

You were wrong, and with years still to go, protest – huge, ongoing, mass protest – seems to be the only way to defend Australia against the US-inspired mission teams of the Tea Party.

Welcome to Lübeck! Tourism before the terror

It's so long since the trip, when Ms T and I and our sons travelled to the UK for the first time, and one of the great memories has nothing to do with the UK – more than ten years.

Don't get me wrong: the UK trip was a treat beyond our means, which is why our dearest friend on earth helped us get there. But … that is a different story.

In a world that hadn't yet suffered the global terrorism panic pandemic, we called by a minor German city, Lübeck, on our way home. The only reason is that Ms T believes a big part of her family history is associated with that city. “We once owned a castle that got turned into a mental hospital in East Germany” is the short version.

So we figured out that a cheap flight would land us in Lübeck to be tourists, a cheapish train would take us to Hamburg, and after that we could pick up our flight back to Australia with no penalty.

So we went to Lübeck, and there are things to see there: churches, for example, restored after WW2 in which the “restoration” work is left in plain white and the “original church” is the bits gathered up after the war, so you can see, dark-on-white, the extent of the devastation.

There's the tourist boat trip around the harbour, which I loved. Or the sausage-seller who could talk better to my son (who has no German) than to my wife (who studied the language in high school)!

But that's not my favourite memory of Lübeck.

My favourite memory happens at border control, in an airport better described as a “shed”, with one bored customs guard processing the incoming passengers.

It seems that in those days, at least, if you were flying cheap and your destination was a Hamburg industry conference, you landed in Lübeck and got a free bus to the conference. So the customs officer had his repertoire down pat:

“Travelling to Hamburg? Out the door, right to the bus, good-day.”

We broke his recitation.

“Travelling to Hamburg? Out...”

“No. We're travelling to Lübeck.”

“Lübeck?” … pause … “Why?”

(And I'm not going to try to do a German accent in text.)

Ms T: “Because my family came from here.”

The customs guard switched from bored to a face-splitting grin and arms spread wide. Really: I've rarely seen a transformation like it, especially from someone in uniform behind a desk. He stood up:

“Welcome! Welcome to Lübeck! Willkommen! To our lovely city!”

It took us a few minutes – which wasn't welcomed by those behind us – to get through customs, because we were receiving (good) advice about where to get breakfast, and being reminded that “you can walk everywhere in Lübeck!” (which was true), and a reminder of the churches and squares that were worth seeing (he was right).

And the customs guard gave us the key bit of information that made our walking-tourism perfect, that day: “Go to the railway in a taxi, leave the luggage in a locker, and go walking”.

And we have wonderful and (some) distressing memories of that city: its war damage must have been horrific, for example. But we also remember being welcomed at the gate of the city, with joy and enthusiasm, and I wish a dozen years later I could find that guard so we could all thank him properly for helping us find a strange city in a foreign tongue, and enjoy it.

But the world changed, with America holding the whip: I guess the customs guards who have license to smile are few and far between, today. But Lübeck won't have changed that much behind the gate, and it's a wonderful place.

Lisa Bonchek Adams: say what you will

To write this, I first had to do something really difficult. I'll explain that in a minute, but it's the reason I'm crying.

The debate de jour has been sparked by some of the most insensitive columns I've ever read: this, from the Guardian (which includes the utterly shameful admission that the columnist included direct-message conversations in the column without permission), and this from the New York Times – a stunning husband-and-wife double-act to piss on a dying woman because she's Tweeting her cancer.

To answer the wife, Emma Keller: there is no ethical question. A person has chosen to write and publish, and has a platform from which to do so, and you have no damn say in it. And, Bill Keller: your snide aside about the cost of visiting dogs is beyond reprehensible.

The cross-platform pissing contest is cowardly beyond anything I can express.

And I recall to mind another individual who chose to die in public, Denis Wright. His blog posts – still preserved here, for how long I know not – were an exemplar of dignity, a life documented in public as Lisa Bonchek Adams' is, and the reason I'm crying now, because I re-read the last week of his journey and the following eulogies and damn even writing these words taps a spring of tears. It was really difficult.

If Lisa Bonchek Adams is wrong to fight her fight in public, then so was Denis. I'm too distant from Ms Adams to speak to her stance, but Denis, I at least knew well enough on Twitter to chat with, and I admired him well enough to (I hope) learn from.

And I'm still on the edge of tears.

My wife and I have chosen to put some of her experiences on this blog, and I won't reiterate them tonight. Our path is different: not cancer, but the toxic and dangerous path of a medically-suppressed immune system.

The reason we speak out is because we know there are things aren't known to the world at large: really, the same reason that Ms Adams is Tweeting. And because we see the “pink ribbon” view of illness – the glamour that raises funds – and like her, we resent it, because there's nothing glamorous about illness, and nothing pink about vomit or shit or pain.

Ms T and I are with you, Lisa Bonchek Adams: keep saying it. We understand. We endorse.

Save what you can

“Negative thoughts never lead to positive outcomes”.

Aside from the fact that sales aphorisms always come from Rich White Americans, I call bullshit.

I can easily think of at least one profession in which thinking the worst leads to success, and optimism leads to disaster.

Here's a video of what happens when a civil engineer is an optimist - the Tacoma Narrows Bridge:

And here's an engineering pessimist:

“If I put one rock on another”, the real engineer says, “there will be an earthquake, or a flood. We'd better build it like this, so it never falls down.”

“Negative thoughts never lead to positive outcomes”? Bollocks.

And yet, the same world that can consider a lame aphorism like that which led this post can treat subscription underwear as a good idea:

“I am an adult male, so lame that I can neither wash nor buy underwear, but that's okay because there's a lauded start-up that will let me subscribe to my jocks.”

Truly, I have not seen a more lame idea since the Tech Wreck (look it up).

Its premise is that men can neither clean nor buy their own underwear. And, given the spavined, incapable, can't-do-without-mummy, send-me-skincare culture of the modern male, I guess it'll probably make enough money to get by.

Look: if you're so lame you can't keep track of underwear, you're not a man, because you're not an adult of any kind. The washing machine – over there, lamo – can be deciphered without a codex, the clothes-line is outside, I realise it's an uncomfortable distance from the computer so take the damn iPhone with you, and if it's raining, use the dryer, whose interface says “on” and “off”.

But no, there probably is a demographic of 20-something utter losers who can't keep track of their own underwear, and can't bear to ask mother to keep them supplied at least until they find a girlfriend whose devotion works better than her nose.

And those “men” will probably be working in sales, and believing the same stupid aphorisms that their elder sales-people are sprouting at them.

Sad, really.

Here's another bunch of ten-cent aphorisms that gets published because it's from Harvard. 

1. “Don't give up on your dreams”. Dude, I'm not at Harvard, and I'm over fifty, and my wife's health got stolen by her immune system, which means she'll never work again. I had to grow up, and focus on survival, and walk away from my dreams. You smug turd.

2. “Don't be afraid to suffer”. Of course I'm afraid. Humans are. I've carried my wife into ICU, for heaven's sake. If next year has worse, I'm terrified. You smug turd.

3. “Seek the mystery inside the truth, not the truth inside the mystery.” Meaningless drivel: bollocks with Harvard's name attached. A plastic Buddha with made-in-China on its bum.

4. “Let you happen”. What the hell? Really, what can happen to me that isn't me? You're just pulling aphorisms out of the evanescence of fart by now.

5. “The question isn’t if you’re going to die. It’s whether you’re going to live.” Jesus Christ. You're going to die, I'm going to die, my wife's going to die, it happens to all of us. And I'm sick to the back teeth of gimcrack philosophy. I don't wish your death, I just desire your silence, until you've learned life at the teeth of death.

Dude, by now I've spent one-third of my life caring for people who I loved, who were dying. Your theme-park philosophy isn't worth two thirds of a cube-root of nothing. Right now, I am celebrating because my wife can walk three kilometres, and can consider six in the near future.

I've got a simpler philosophy, the last line of The Triffids' album Callenture.

“And between ourselves, and the end at hand /

Save what you can, save what you can.”