Moving the deckchairs

For Tim Owens and Mike Caulfield

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This is a quick post to mark a small turning point. Thanks to the extraordinary patience of Tim Owens at Reclaim Hosting, this blog has shifted to its own domain, and future posts will be coming from musicfordeckchairs.com.

As far as I can tell, subscribers have been transferred but if you have links to the blog, or RSS feeds from here, you’ll need to update them yourself. I’m so sorry if this causes bother.

Staying with wordpress.com for four years helped me learn a ton of simple things. But I’ve been following the development of Jim Groom’s Reclaim Your Domain philosophy from the get-go, and it has always made sense to me, not only as someone who writes in a way that is quite obviously independent from the public communications of my employer, but also as someone who works with students writing in public.

Back in October 2013, Jim wrote a post on his vision for the Reclaim project, that connects the pragmatics of domain ownership to open models of education and learning, to the demands and refusals of agency we all experience as we go about our digital lives. This is where he came down:

To negotiate anything from voting to financial aid to welfare to health care you will need to be web literate. As more and more of these social services go on line, the more we will need to understand how these spaces work, have access and control over this data, and ensure that we’re working to educate the folks who need to know how it works most. I loved that idea, and it abstracted well beyond education. In that regard, reclaim your domain is bigger than that—it is starts to possibly frame a blueprint for a kind of federal digital strategy on an individual basis—something like this has to be coming sooner or later. All of us want some way to start thinking about how we will manage, archive, and share the digital resources we have been creating, collecting, and sharing over the last twenty years, and this will all get more important as time goes on. In many ways this branch of reclaim the most exciting to me.

I was immediately taken with it and planned to join. But about a month later, I found myself dealing with a whole other domain that took me away from this practice for 18 months of illness and recovery. During this time Jim encouraged me nicely to hop across any time I was ready, but for all sorts of reasons I was losing confidence in the ability even to write sentences let alone grasp new things. So I told myself that this level of agency wasn’t for me.

It’s not the coding, but something else: conceptually, I really am a dunce. Spell it out for me, show me on a video, give me a pattern, and I’ll copy the instructions faithfully. In craft terms, I’m a counted cross-stitch gal, with the emphasis on counting.  (Although if you have the slightest interest in what cross-stitch has to do with the internet of things, do take a detour to this lovely student blog post and see what she has done there.)

So something really basic about domain mapping just didn’t click, and I stayed within the realm of the safe and familiar, avoiding the language that seemed to metaphorise onto familiar imagery, until it didn’t. My head was spinning: the digital side of the digital humanities was really failing on the vine for me.

Then earlier this summer, I was given the opportunity to participate with Mike Caulfield, Ward Cunningham and their community of coderati in the Federated Wiki project. From their careful encouragement, I learned how to learn a new skill in an unfamiliar language, and how to understand the skills I have as a writer and bricoleur through a different lens.

If you can make time, the big educational proposition behind the Federated Wiki project is in this extraordinary keynote from November 2014, looping and lacing ideas from Sputnik to Jim Groom to the Kinneavy Triangle to Kate Middleton’s wedding dress.

If you’re in a rush, skip to this:

 I hope this can open up an honest discussion about the ways in which social media is not serving our needs as it currently stands. As advocates we’re so often put in a situation where we have to defend the very idea that social media *is* an information sharing solution that we don’t often get to think about what a better solution for collaboration would look like. Because there are problems with the way social media works now.

My hypothesis is that this federated scheme solves many of the problems. I might be right.

But what I *know* I’m right about is that these problems exist, and they are serious.

Minority voices are squelched, flame wars abound. We spend hours at a time as rats hitting the Skinner-esque levers of Twitter and Tumblr, hoping for new treats — and this might be OK if we actually then built off these things, but we don’t.

We’re stuck in an attention economy feedback loop that doesn’t allow us silent spaces to reflect on issues without news pegs, and in which many of our areas of collaboration have become toxic, or worse, a toxic bureaucracy.

We’re stuck in an attention economy feedback loop where we react to the reactions of reactions (while fearing further reactions), and then we wonder why we’re stuck with groupthink and ideological gridlock.

We’re bigger than this and we can envision new systems that acknowledge that bigness.

This.

I entered the Federated Wiki experiment as a writer, and came out a better writer, because I learned how to use technical connectivity as a light trapeze from one idea to another. Federated Wiki isn’t for everyone, and it’s certainly got a face for radio at the moment, but my experience has been that there are very sophisticated values behind it that have something to do with how we’ll learn in the future.

So now, thanks to all the human patience and technical encouragement of people like Tim and Mike, and Audrey who said “just do it”, I’m pinning a note on the door of this blog to say that everything is just over there

Words for the way we talk

1.

January 28th, 1986 the Challenger Space Shuttle finally took off after many delays and concerns about safety. The mother and father of teacher-astronaut Christa McAuliffe were watching from the stands, news cameras trained on their upturned faces as the shuttle explodedScreen Shot 2015-04-29 at 10.44.49 am

Etched forever” is a meticulously pieced together account of the reactions of all those who prepared for the launch and then witnessed the explosion, from the NASA ground support to the families to the President to all the bystanders. So many stories woven together by a technical malfunction with its own story, that had been assembling itself over time while all the human stories came together. This is “For and Against Knowledge (for Christa McAuliffe)” by US poet Sharon Olds

If you don’t have to ask it,
Fine, but I have to ask it.
If I were her mother or husband, I would
Have to go through the center of it.
What happened to her? As long as it was she,
what did she see? Strapped in,
tilted back, so her back was toward
the planet she was leaving, feeling the Gs
press her with their enormous palm, did she
weep with excitement in the roar, and in
the the curve of her tear did she see for an instant
the first blush of fire?? If she were my daughter,
I’d want to know how she died–was she
torn apart, was she burned–the way
I wonder about the first seconds
of our girl’s life, when she was a cell
a cell had just entered, she hung in me
a ball of bright liquid, without nerves,
without eyes or memory, it was
she, I loved her. So I want to slow it
down, and take each millisecond
up, take her, at each point,
in my mind’s arms–the first brilliant
shock hit, as if God touched
her brain with a thumb and it went out, like a mercy killing,
and then, when it was not she,
the the fire came–the way we burned my father
when he had left himself. Then the massive bloom un-
buckled and jumped, she was vaporized back
down to the level of the cell. And the spirit–
I have never understood the spirit,
all I know is the shape it takes,
this wavering flame of flesh. Those
who know about the spirit may tell you
where she is, and why. What I want
to do is find each cell,
slip it out of the fishes’ mouths,
ash in the tree, soot in your eyes
where she enters our lives, I want to play it
backwards, burning jigsaw puzzle
of flesh suck in its million stars
to meet, in the sky, boiling metal
fly back
together, and cool.
Pull that rocket
back down
surely to earth, open the hatch
and draw them out like fresh puppies,
sort them out, family by family, go
away, disperse, do not meet here.

2.

Michel de Certeau concludes his chapter on the paradox of dying and writing like this:

To write, then, is to be forced to march through enemy territory, in the very area where loss prevails, beyond the protected domain that had been delimited by the act of localising death elsewhere. It is to produce sentences with the lexicon of the mortal, in proximity to and even within the space of death. … In this respect, the writer is also a dying man who is trying to speak. But in the death that his footsteps inscribe on a black (and not blank) page, he knows and he can express the desire that expects from the other the marvellous and ephemeral excess of surviving through an attention that it alters.”

That.

3.

This is from a three minute excerpt of a slightly longer documentary made with Myuran Sukumaran in conversation with educator Ivar Schou, in 2014

You think about all these tangents that your life could have gone on. And you think how could I have got there, how could I have got this, if I had done this differently, you know everybody does this when they’re sitting in their room with nothing to do for five years, you know you do a lot of thinking. … I accept what I did was wrong and I know that I should be punished for it but I do think the death penalty is excessive and I should be given a chance. I have demonstrated that I can do good and be good. I think I could do a lot of good in the outside if I ever did go free. It’s not like I’m just going to just go back after all this and just sit.”

4.

Every day this week fresh, wet artworks have been ferried from Nusakambangan in the hands of Myuran Sukumaran’s family, frienScreen Shot 2015-04-29 at 10.42.48 amds and lawyers.

Along with other prisoners on death row, he refused to sign the papers for his own execution. Instead, he painted this picture, inscribed “Satu hati satu rasa didalam cinta – (one heart, one feeling in love)”, and the other prisoners signed it, including Mary Jane Veloso, who wrote “keep smiling”.

When the family representatives brought to the island as part of official proceedings heard the volley of gunshots just after midnight, no one had told Mary Jane Veloso’s sisters that she had been removed from the list.

In the Phillipines, the woman who took her to Malaysia, and organised for her to be given a suitcase, has been found. Mary Jane Veloso is still living, and will be returned to her original prison.

There are still over 40 prisoners sentenced to death execution for drug-related offences in Indonesia, including Mary Jane Veloso.

5.

The Roy Morgan company has surveyed Australians every year since 2008 to discover which professions are held in the highest and lowest regard for ethics and honesty. We like nurses and, oddly, pharmacists. We really don’t like people who sell us things. (University lecturers come in around the middle, with lawyers.)

We hold journalists and television reporters low in our esteem; in 2014 they were ranked 18th out of 30, a consistent downward slide.

Australian journalists who worked this long, painful shift in Indonesia, living alongside the families of the prisoners in Cilacap’s hotel, deserve better. Their words have often been all we’ve had to follow, and their exhaustion and trauma must be extraordinary.

And now, where do educators go with this? What do we do with what we learned about ourselves, our world, its rapidly changing media infrastructures and networks, and the thoughts of others around us? If our attention were to be truly altered, as de Certeau puts it, by these deaths and all the words and paintings that this burning puzzle flung out—what would we see, what should we do?

Writing and dying

This weekend the situation in Indonesia has escalated. It shouldn’t have come to this, and yet here we are. Networks and timelines are filled with expressions of horror and sadness that the executions are going ahead. Families and loved ones are racing to get there in time; governments all over the world are appealing and protesting. The lawyers are giving last minute radio interviews, exhausted. A consignment of plastic chairs being ferried to the prison is photographed and worried over. Who are these chairs for?  

Those who are still cheering on the executions as Indonesia’s decisive move in the war on regional drug distribution have a real problem in Mary Jane Veloso. Mary Jane is a 30 year old single mother, and her sons are just 6 and 12. Her own account of the events that led to her arrest has been published unedited online. In 2010, she left her children at home with her parents in their village, and travelled to Malaysia because she was promised domestic work that would enable her to provide for her family. There, someone she trusted gave her an air ticket and a brand new suitcase for a week’s holiday in Indonesia before her work started.

“We were so poor,” Ms. Veloso’s older sister, Marites Laurente, recalled of their time growing up. “We were just picking up bottles and plastic in the road to sell to make money.”

The suitcase contained 2.6 kilograms of heroin concealed in the lining. At her trial she was assisted by a student translator who didn’t speak much EnScreen Shot 2015-04-26 at 2.57.22 pmglish, and she didn’t either. There is a last minute worldwide social media campaign underway to try to save her.* As the stories of the others scheduled to be killed on Tuesday with her make clear, drug transportation is a business that’s managed as much by improvisation as organisation. People end up in the wrong place at the wrong time, having a go at making something better.  Read this:

Jamiu Owolabi Abashin was living on the streets of Bangkok in 1998 when a fellow African living there took pity on him and brought him home. Shortly thereafter, according to Mr. Abashin, his new friend asked whether he wanted a quick-paying job, in which he would get $400 for bringing a package of clothing to the friend’s wife in Surabaya, Indonesia, where she sold used shirts and pants.

But what do these stories have to do with us as educators, if we’re not legal experts, or researchers in drug policy? What should be our investment in this, if we’re not family or friends? What if our attention is just a variant on the prurient fixation with moment-of-death videos that Jade Davis calls out in her excellent piece on the street killing of black men in the US? As she says, it’s increasingly effective in prosecution that bystanders had the courage and presence of mind to record what they could see, but this is also the decision that puts the very moment of dying on the nightly news and all over the web, where their mothers and children can’t possibly turn away in time.

I have no idea how long it took for the announcement that the police officer who shot and killed Walter Scott would be charged with murder to make it to social media. What I do know is that I learned about it on social media, which is when I also learned what Walter Scott looked like as his feet hit the ground those last few times. I know exactly what his last step looked like.

That was when I closed my browser and walked away, because I couldn’t take seeing the rest over and over again.

Some of the same dilemma plays out here. How much do we need to know about the way Indonesia manages the business of execution, given that our knowing it inevitably exposes their mothers and sisters and their children to these details? There’s no respite from it: we have eye witness accounts, and stories from those who have participated, and the newspaper articles have illustrations, and the stories have details, and if I was their mother you couldn’t burn that stuff fast enough for me.

French philosopher Michel de Certeau, who died of cancer in 1986, wrote about the problem we have with the management of imminent dying. It is because we can’t accept our own mortality, he writes, that we put the dying away, out of sight. Literally, we make the dying person into something ob-scene: off the scene, can’t be seen. Humane killing is carried out at midnight, with only the minimum number of legally required witnesses. (Who are those chairs for?)  What he calls “the immoral secret of death” is written back in, “in all the procedures that quarantine death or drive it beyond the limits of the city, outside of time, work, and language, in order to protect a place.”

But deCerteau’s point is more complicated than this. It’s not because we close the browser and walk away, but precisely because we hold in our minds the details of someone’s dying, whether that someone is ill or is waiting in a cell or is right in the moment of being shot in a park, that we’re keeping their death in a place that is separate from our own. “I am participating in the illusion that localises death elsewhere, in the hospital or in the last moments: … by identifying this image with the dying person, I make it the place where I am not. Through the representation I exorcise death, which is shut up next door, relegated to a moment that I assume is not mine.”

For deCerteau all this is confounded in the end by the practice of writing. Writing itself invites death right back into the room because we write in anticipation of being read, later. Writing only exists because of what has been written—the traces and after effects of the moment of writing itself, which is more or less nothing in the scheme of things. And it’s through writing that we resolve the trick of locating death elsewhere, by producing it right out of ourselves, out of the mental calculation and physical gesture of putting words together. Look, we say, as the sentences appear, here I am in the very moment of living my life, and that moment has always immediately passed. Here is my dying, and now it’s bound up with yours, because this is the condition that we share.

So if “death is the necessary condition of evolution”, as deCerteau points out, and “the law of the species is that individuals must lose their place”, then why care so much about those who are leaving us? Why are so many taking to the streets and calling radio shows and expressing their anticipatory grieving online as we wait through these terrible two days?

Firstly, it’s because dying is the most precious thing that we do, the most important and generative capacity that we share, and it’s the one thing that should restrain our chasing of productivity, status and stuff. We need to learn to live with it better, for sure, but we don’t do this by letting it become a bargaining chip in a political war on this or that. And secondly, dying entangles us intensely with the lives of others; we are all woven together and one life can’t be neatly picked out without severe, sometimes not-survivable, damage all around it. This violent and premedidated bereavement, including of children, can’t be made civilised, no matter how many forms are signed.

The stories from all those waiting to be executed on Tuesday tell us that this world isn’t a safe place for most of the people in it. The least we can ask is that the state recognises this simple thing: dying belongs to the individual, and is the most fundamental human capacity that the state is there to protect.

There is still time to speak

Please read this article and take a moment to sign this petition to appeal for clemency for Mary Jane Veloso. The Mercy Campaign petition for Andrew Chan and Myuran Sukumaran is here. What difference will it make? Maybe nothing in relation to the outcome, but maybe also something really critical for those who love them. It’s all we can do, and it’s not nothing.

Appreciation

This post owes a lot to others who have helped me think about an educator’s place in relation to death and dying, but especially to Paul Prinsloo, Bon Stewart, Melonie Fullick, Jesse Stommel, Jade Davis, Frances Bell, Anna Notaro, Audrey Watters, Rachel Duke and Tressie McMillan Cottom. And there is nothing adequate at all that can be said to those who love Myuran Sukumaran, Andrew Chan and Mary Jane Veloso and the others on death row tonight, except that our heartsick thoughts are with you all.

Vigil

End of life illness stories come to this moment: the final period of waiting and staying awake. Sleeping mats on the floors of hospital rooms, dozing in chairs, holding hands, keeping shifts and vigils, hard choices, knowing what is to come. There’s an intense wish repeatedly expressed to get there in time: for the living to be present with the dying, to let them know that they are safe and cared for, and that those they love are safe and can go on from this point, to let them go well.

A vigil is a form of ethical attention. It’s an act of deliberation, a commitment to staying awake during the time that is normally kept for sleeping. It comes to us from words that invoke the simple fact of being alive and strong. We keep vigil because we are still here, and we have the capacity to give our time to waiting: attention as the rarest and purest form of human generosity, as Simone Weil put it.

So this week Australians and now many others around the world are keeping a vigil, in growing numbers, for two lives trapped in the gift of a system that seems to have innoculated itself against any possibility of saving them. It is almost beyond belief that political calculation could play so large a part, and yet there it is. We’re amazed, shocked, disbelieving and much more informed about the procedural technicalities of death by shooting than we were.  It’s like something happening in black and white, in slow motion. It doesn’t belong in this world.

Except that it’s here.

Myuran Sukumaran and Andrew Chan have achieved so much where they are because the Indonesian prison system has some fundamental expectations of prisoner self-sufficiency, that place a different set of practical demands on prisoners and their families than we commonly see in Australia. What happened next is suddenly being recognised by advocates of restorative justice around the world as a unique configuration of structure, agency and institutional trustThe risks taken by the prison management itself in trusting them, and the way that they have each responded, resulted in a new system working in the best possible way for others. The prison governor testified on their behalf.

Australians have been taken by surprise by the fact that this restorative work has been going on for several years, and that our lazy stereotypes of “drug kingpin” and “godfather” are so completely out of date. This is not who they are. And from the level of support that they’re now getting, it’s very clear that significant money could be raised to extend their work, and perhaps even transfer some aspects from Indonesia to Australia.

So this is a very, very hard moment, and a very difficult decision to accept. Why shoot them now, after all this time? What possible future is there for rehabilitation as a vision for anyone once this thing is done?

Understandably, it’s easier to retreat into the mechanics of standard operating procedures than to admit a misgiving, to explore instead the complex potential of trust—in human capability, in rehabilitation, in imagination. In every leadership manual ever we’ve accepted the same limiting proposition: that strong leadership amounts to a willingness to act decisively and to push on regardless, braving unpopularity. There is nothing at all, it seems, on how strong leadership could go about reversing its own decisions, on the basis of fresh evidence.

A couple of days ago someone wrote privately to me that what’s happening is causing us all to “have a good hard look at our humanity”. I don’t think that’s overstating it, and I think this self-scrutiny is at the heart of our vigil. We’ve all seen the expressions on the faces of the men in orange jumpsuits waiting to be killed, but we’ve rarely had such intense exposure to what comes before that—the waiting, the bargaining, the families, the dread.

Governments who execute force us all to watch, but what we feel and think about it is up to us.

So while we’re waiting, we’re wondering: could we have done more, said something different, shown up sooner? It’s not just the people who gave casual answers to polls that were then used to claim something about Australian popular support for execution, or even the people who commissioned and published those polls in the first place—as if this really should be a crowdsourced verdict, like some kind of reality TV voting process.  It’s not the difficult possibility that Australians didn’t speak out sooner because they’re not white. It’s not even the relentless tallpoppyism that is still, incredibly, causing people to say that there’s nothing special about them and the attention is undeserved.

The vigil we’re keeping is the answer. The attention is deserved because they have as much right to have their human sovereignty over their own lives defended with great force, as any of us do. The attention is deserved as it was for Mike Brown, and Eric Garner, and Ms Dhu, and T J Hickey. Human sovereignty over life matters, and really has to be bigger than state sovereignty; this is why murder, like torture, can’t be part of the instrumentality of the state. Whatever it might achieve, whatever political strategy it might be part of, is very, very tiny on the scale of what will be sacrificed.

Today there are public vigils being held in Sydney, Melbourne, Perth and other smaller places. More and more voices, including powerful ones, are speaking up. There is almost no hope left—but the most incredible stories of human survival are those where there was no hope at all, and those waiting did not give up.

The Mercy Campaign petition is still open. Please sign if you can.

And please watch this. Myuran Sukumaran in his own words, on living. Or this, on the projects they’ve developed within Kerobokan. At the very least, know what they have achieved.

Update

Last night I drove with my teenage daughter to the vigil held in the Sydney church where Myuran Sukumaran’s family and wider community are part of the congregation. We were welcomed with real warmth, and it was an honour to be there. Messages from Myuran and the Chan family were read aloud, and Myuran’s grandmother was an unflinching and unforgettable presence.

So all possible courage at this late hour to everyone involved. Updates to the Mercy Campaign petition are being sent to the Indonesian government regularly. And there will be another vigil on Friday evening. This is an extraordinary time in Australia.

On the long drive home, we were stopped by a cop. He asked where we’d been, and I told him. “They shouldn’t be executed,” he said. Just like that.

Update

This morning in darkness, the transfer of prisoners to the island where they will be executed has begun. Because the purpose of execution is to discipline others through horror without exposing the state to implications of cruelty, then execution by government is the worst kind of double standard: lockdown secrecy and extravagant display all at once. Let’s put this very plainly: there is no ethical or compassionate way to end a life without entirely defeating the purpose of execution. So there has to be very evident cruelty, and there has to be a thin veil of procedural correctness over it all.

“None of us have 300 years” (Audre Lorde). When we are all gone—all the politicians, the shooters, the judges, the witnesses who insulted and those who wept, the dealers and the users, and the president himself—this moment will be part of history, alongside all the men in orange jumpsuits waiting quietly for the speeches to end. Because in terms of the impact on others, there is absolutely no difference between legal and illegal execution, except candour.

Go well, Myuran Sukumaran.

The reality

Even though I know what the reality is, it gives me hope, it gives me a purpose, it gives me something to do. However little time I have.

— Myuran Sukumaran, Australian artist

Here’s a story that ought to be filling us all with hope: a big tale of resilience, creativity, cooperation and opportunity, driven by a remarkable and gifted Australian. Look at him here: he is young, and healthy, and doing so much good. He has time left. If I was his mother watching this, I’d be awash with pride at what he’s achieved.

But his reality is this: that right at this minute plans are being made for him to be taken to a field, tied to a post and shot. Let’s not mince words, this is what we mean by “death penalty” and “firing squad”, and anyone who is still championing this as a just outcome needs to look much more closely at the violence in the details. There is nothing at all separating this killing from that of Kenji Goto, and the only whisper of daylight between this and the shooting of Kajieme Powell is the premeditation, the forced contemplation of what’s to come. Nothing at all distinguishes what his mother will feel when his body is returned, from the grief of Junko Ishido.

None of us are going to live for ever, and this is why mortality really is inseparable from love. We all wonder how, when, in what condition we’ll end our turn; we wonder who will be with us, and how they will get up and carry on without us when we stop.  Atul Gawande’s Being Mortal, an intensely personal discussion of what happens to individuals and their families at the end of life, suggests that this is why humans really cannot bear the idea of dying. So we go on suffering because we don’t know how to accept that what’s around the next bend—the next birthday, the next family wedding—isn’t going to be part of our life time. The weather will continue, the buildings will stay up and the clocks won’t stop; it’s just that we won’t be here to see it, and people we love will have to go on without us.

Gawande and many others are now arguing that it’s vital to good healthcare that we learn to make peace with human dying, and let that direct us towards living while we’re here in a way that reflects our values. This isn’t a simple thing: it takes time to untangle our own values and beliefs from those of our community and the cultures that shape us. It’s easy to get taken up with the things that seem to matter to others, the achievements that are celebrated, the stuff that is envied. But in the end we all have a fairly strong sense of what we each really care about—what we would go on doing if it was the last day of our lives.

UK palliative care specialist and cancer patient Kate Granger, for example, has taught me a great deal about what it means to value work, and to fight to continue working while thinking that this might be the last year for doing anything at all. Lisa Bonchek Adams advocates tirelessly for the right of patients with metastatic breast cancer to have their condition recognised as a disease stage that can be lived with, and in so doing she continues to love and care for her children, her family and friends. Both have made hard personal choices to continue in treatment, and to do this in public, because this is what enables them to go on living with purpose.

This is Gawande’s point: we each approach the question of what it would take to live the best possible day today on our own terms, whatever the constraints we’re facing. This isn’t just a question for people who are sick; the best possible day is a wish we can all offer each other, for the simple reason that we’re all mortal too. And this really should be the basis for how we treat each other, how we value each other’s time, and how we react to the knowledge that someone is facing their death. This isn’t just about ethics in institutional or constitutional decision-making, or state sovereignty: we stop in our tracks for death, and we try to bring every possible resource of care and hope to the end of someone’s life, because one day that’s exactly how it will be for each of us.

How people die and how we participate in their deaths is as much about us as about them. Our own humanity is at stake.

— Eric Manheimer, MD, Twelve Patients

And so I can’t make peace with this dying at all. I wander round the house thinking about him, and I know that thousands of us are doing exactly the same, right at this moment. Those close to him have said goodbye and look exhausted with grief. I can’t imagine their pain.

Execution strips all possibility of dignity or care from the event of dying, which is why it’s used wherever the aim is to brutalise and terrify. The aim isn’t simply to end life, but to cause its end to be a spectacle, and to force the whole world to contemplate the violence and abjection of life being ended in this way. Kenji Goto’s mother, pleading for his release, said that she would sacrifice her life for his, and we all knew that this was an unbearable cruelty that she should be made to suffer the knowledge of his death, and her exclusion from it. Nothing is different here.

Myuran Sukumaran is an Australian artist. With persistence and vision he has created a studio and an educational enterprise filled with generosity, and inspired an incredible campaign to try to keep him alive. And at this last minute, he’s still there painting, caring for his family, thinking it all through, making a portrait of himself and the island of Nusakambangan, where prisoners are taken to be shot.

He is one of us, and he is still alive. Don’t disturb him. Let him paint.


While there is still even a fraction of time to register your concern, please consider following the Mercy Campaign and signing their petition for clemency. They are highly organised and refusing to give up hope. Also, Australia’s parliamentarians are united on this, which is all the hen’s teeth you need.

End in sight

I suppose it’s like the ticking crocodile, isn’t it? Time is chasing after all of us.

–J M Barrie, Peter Pan

It’s highly probable that somewhere in the world today a child has been born that’s going to live to 150

–Joe Hockey, Treasurer

Two thoughts.

1

Australian politics is frozen in mid backflip over the shark, and I’m still stuck on the Treasurer’s claim back in January that we need to shore up our public health system to prepare for Australians living to 150.

The precision of the Treasurer’s belief is relevant. It comes from longevity research, where 150 is indeed the number thrown about. There are strange characters in this field, and probably the strangest of them all is the bearded British eccentric and self-taught biogerontologist Aubrey de Grey, who’s one source of the idea that the first human who will live to 150 is already alive today. He’s the “Chief Science Officer” and co-founder of the SENS Foundation (“Strategies for Engineered Negligible Senescence”), and also co-founder of the Methuselah foundation. His TED talks are mesmerising.

The goal of engineered negligible senescence is to reframe age-related deterioration as a disease that can be targeted, and a problem that can be solved. Regenerative medicine isn’t short of cash, or hubris. The Methuselah Foundation has given “over $4m in funding … From tissue engineering to stem cell science, we’ve seen explosive progress in the industry, and we’re more convinced than ever that regenerative medicine will transform health care in the 21st century.”

Google has also invested heavily in longevity research through the California Life Company initiative, Calico (“We’re tackling aging, one of life’s greatest mysteries”, although “as we make early progress on our research and goals, our capacity for handling press inquiries is limited.”). Despite not having time to talk to the press, Calico is now in a $1.5b partnership with pharmaceutical research company AbbVie; extending life makes sense to the markets.

Because extending life is still medically speculative, the Palo Alto Investors LLC has set up a $1m prize focused on proof of concept. For now, the prize is hung out for those who can prove it’s possible to extend homeostatic capacity in mammals. Homeostatic capacity is the natural ability to repair after damage and recover well from illness, and if we could only stop it degrading over our lifetimes, we’d be able to kick on for much longer.

150 year old Australians turn out only to be a modest target in this startling field; the chief investor in the Longevity Prize, Dr Joon Yun, seems to have set his sights on death itself:

A normal 25-year-old has a one in 1,000 chance of dying from outside forces in a given year. If declining homeostatic capacity were not a factor, a 1,000-year healthy lifespan is theoretically achievable. The mortality rate of a healthy 15-year-old is 0.01 percent in a given year, which could theoretically translate to a 10,000-year lifespan.

To be sure, immortality is not the explicit goal of the Prize, but the successful abolition of aging would certainly make death the next target.

“We hope that, if we are successful … sustained homeostatic capacity will have the consequence of making death a statistic rather than an inevitability,” Yun said.

The ethical questions here don’t need underlining. This is the meat and potatoes of science fiction: when research succeeds in abolishing aging (or “curing death”, as Google puts it), not everyone will have access to negligible senescence technologies. There will be industries and markets and scarcity, and price will be manipulated by the usual corporate hoarding of patents. Not everyone will be a winner.

So this is why extended longevity of the 150-year kind should feature in Australian healthcare planning. It’s not because frail centenarians will be clogging up the public health system, but because the prospect of living to 150 is the kind of thing that ratchets up demand for private health solutions, puts the fear into financial self-management, and widens the gap between Australians who can pay for upmarket services, and Australians who can’t access the basics.

In other words, it’s exactly why we shouldn’t be stripping down our public health services as we wait for the miracles to come.

2

It’s been a terrible week for contemplating the horror of dying by execution, as we’ve all not looked away quickly enough from the blunt evidence of human cruelty. Suddenly our social networks are filled with images and videos of bleak and lonely deaths driven by a simple calculation: that because humans want to stay alive, and are loved with intensity by others, then human life itself can be exploited, weaponised, haggled over, and finally thrown down in the war on one thing or another.

And now two Australians are waiting to be executed in Bali for organising an attempt to shift heroin into Australia in 2005, that failed spectacularly when all nine involved were caught. They have been in prison for ten years, living their lives and waiting for this shoe to fall. One has become a pastoral leader, and the other a painter who runs art classes for other prisoners.

The apparent justification is that shooting them now, after all this time, will make others think twice about participating in the distribution of illegal drugs. Prominent Australians who have used heroin and lost children to heroin have argued against this with compassion and respect. There has been a wide and concerted campaign across the Australian media asking for clemency. Artists, musicians, lawyers, senior clerics and writers have spoken up, and are continuing to call for hope.

And yet there they are, waiting to be killed for decisions taken 10 years ago.  Their mothers are with them. I don’t know how they’re still putting one foot in front of the other, knowing the separation that’s ahead. I would not. Even the most tough-talking death penalty proponent hasn’t put forward a justification for this extreme punishment of their families, whose distress and dread is overwhelming.

So that’s why I’m in furious agreement with everyone writing, singing, speaking, holding vigils for mercy for Andrew Chan and Myuran Sukumaran. It’s because they’re human, and because human mortality shouldn’t be exploited to punish or terrify, any more than it should be trivialised as a medical problem waiting to be fixed.

* the title of this post comes from ‘Nothing is Made New‘, a poem written by John Kinsella and delivered to the President of Indonesia as part of a plea for clemency for Chan and Sukumaran.

Whatever it takes

“We will do whatever it takes to make Medicare sustainable … If we don’t, with an ageing population, we will find ourselves in 10 or 20 years with a system that will collapse under its own weight.”

Peter Dutton, Minister for Health,  The Australian November 27

With things in the world as they are, two things to celebrate, and Australian health care reform.

First, something really great: the women of Elcho Island mentioned a couple of posts ago succeeded in their crowdfunding campaign, and can now put in place their plan to address some of the nutrition and health issues that contribute to chronic preventable disease in their own lives and families, under their own community leadership.

In the same week, our Federal government—the government that currently has care of the Australian public health system on our behalf—outlined Cunning Plan B for their own bit of crowdfunding.

The plan now is to reduce the amount of funding to GPs by $5 per visit, an amount that GPs can either choose to pay for themselves or shift onto patients. This saving to government will be still not be invested back into Medicare itself, anywhere, because it’s still going to be harvested into a national medical research fund. That’s the crowdfunding part.

There are some other modest improvements in the new copayment proposition—especially the sudden insight that pathology collectors who spend all day working alone drawing blood in centres that say NO CASH ON PREMISES can’t actually collect cash on those premises.

And plans to make it mandatory for GPs to collect a co-payment from people under 16 or on concession cards have also been parked. As Health Minister Peter Dutton put it to leading Australian television journalist Leigh Sales this week, the focus has narrowed to people who could pay more, but don’t:

And we believe the people on higher incomes, people in your situation or mine, that we do ask a $5 co-payment, but that we haven’t mandated it.

OK, let’s not muck around here. People in either Peter Dutton’s situation or Leigh Sales’ situation aren’t reference points for the general Australian population, income-wise. So this remark deserves a bit of attention.

Because this is still a health policy shift that is not primarily designed to improve health outcomes. As furious GPs and community health organisations across Australia have been pointing out, the impact on lower income users and already vulnerable communities will continue to be far more serious than on anyone like Peter Dutton or Leigh Sales.

The National Aboriginal Community Controlled Health Organisation, for example, put it bluntly that this is still a proposal to defund the services that are trying to fix Australia’s existing problems of health equity:

“Aboriginal people are not overusing services, they are underusing them. Adding a financial barrier like a co-payment will not help reverse this trend.

“To close the gap there needs to be every incentive in place to get Aboriginal people to have check ups, to see their doctor, to attend their follow up appointments and attend to their health needs.

“The co-payment undermines universal health care and targets the wrong end of the system. It is simply poor health policy.”

If it’s not good health policy, what is it? Apart from funding the hypothetical Australian cure for cancer, Cunning Plan B isn’t even really aiming to fix a current health funding problem, so much to raise fears about system load in the future that the minister insists we should prepare for now. (This is from a government relentlessly selling prosperity in the present because even “what might happen in 16 years time” is too far ahead to imagine in terms of climate impact. So there’s that.)

But there’s something else going on with all this price signalling, that’s not at all subtle, and is much more interested in the dog-whistling of the past than any risks posed by the future. Governments commonly use price signalling in a disciplinary sense, to stop people doing something. Taxes on alcohol and tobacco fall into this category. Price signalling in relation to GP visits is an attempt to reframe healthcare needs as part of a generalised state of moral co-morbidity, interacting with other symptoms of individual failure to shape up to the demands of being a model citizen in a growth-focused economy.

It’s this idea of health as something that you fix by not visiting the doctor that hitches the GP co-payment to other measures being proposed in the current reform climate, and it’s why Australian higher education really needs to study the language of responsibility versus entitlement in which it’s being haggled over in public. In other words, it’s a huge clue to an effort to turn Australia back towards a time when we celebrated individuals and their ambitions over the wellbeing of their communities, and lived with ourselves by stigmatising those for whom the playing field was a mess of potholes from the start.

But we don’t necessarily think this way any more. Doubts creep in. The vision of people crashing their boats on our shores and drowning right in front of us, and the terrible conditions under which we then hold them indefinitely along with their kids, and people around the world shattered by trying to hold their families together in the face of unimaginable catastrophe just because they are where they are, and the total mess of climate change that even the biggest of polluters are rapidly trying to fix, and people all over the place taking to the streets in protest—all these things have made a difference to the way we think about who has what.

The result is that we haven’t reacted as expected to the reform program before us. As new Guardian columnist Jason Wilson (that’s the second piece of good news) put it so well this week in an outstanding piece on the current effort to put lipstick on the budgetary pig:

But another problem with “resetting” is that the current crop of Liberal MPs – a much more right wing collective than even the Howard majorities were – can’t really comprehend the belief that their budget measures were unfair. Despite Abbott’s well-known Catholicism, he shares the secular-Calvinist presuppositions that animate his party, and provide the core belief of the English-speaking right: namely, that just as the rich deserve their wealth, so do the poor deserve their fate.

Code-phrases like “personal responsibility” express the belief that those who have no job, cannot provide for their own healthcare expenses, or cannot fund their own retirement lack virtues that more successful people possess. Economic values – efficiency, the necessity for “price signals” to deter the undeserving – merely give it a contemporary gloss. It’s possible to stoke the outrage of a minority of Australians with talk of dole bludgers and queue jumpers, but the failure of Abbott’s attacks on the most vulnerable shows that Australia is not at heart a Calvinist nation.

I think he’s right; this is a government that simply cannot stop itself from reaching for the ideological condiment when they’re serving up reform. That’s why we have an out of the blue mention of “six minute medicine” in this policy, for example. It’s a healthcare myth that’s been around for a long time and has already been debunked, but it’s back now because it’s an attempt to smear general practitioners as a whole, to whisper to us that without government regulation they’ll shuffle us all out of the door as quickly as possible, before whisking away to the golf course.

It’s the worst kind of insinuation designed to break down trust between GPs and their patients, to tell us that the government is on our side as consumers, and the people to whom we’ve entrusted our health are not. This is the reality of  “whatever it takes” healthcare reform: it’s sly, divisive, and unconvincing, and I can’t imagine how tough it must be to suddenly be the target of it.

So this is really an end of year thank you to the GP who takes care of me as a public health cancer patient and looks after my whole family, and to all her GP colleagues and their professional staff. We are so grateful for everything you’ve done for us.

Hang in there.