Indigenous health: Not bleeding hearts, just the bleeding obvious

To many Aboriginal people in Central Australia the narrative of illness is very different from the one described by western clinicians, argues longtime pro-Aboriginal activist, Prof. Don Palmer Tjungurrayi. “Western doctors would say that kidney disease, for example, is out of control because Aboriginal people make poor choices about food and exercise. For many Aboriginal people the causes are personal and spiritual. They feel they have been cursed. They regard the kidney as a sacred place where the spirit – the kurrunpa – lives. Sick kidney, sick soul.”

Don noted in an address to the Sydney University Red Cross Society on 16 August that the largest dialysis unit in the southern hemisphere is in Alice Springs. “Here more than two hundred of our First Nations people are locked into the demands of the machines and their bodies. Their expressions show depression and hopelessness. The light has gone from their eyes. Most don’t comprehend the situation in medical terms. Most understand it in spiritual terms. Collective existential despair. And too many health providers have poor comprehension of their patients' world view.”

Below is the original text as published on the website of The Malpa Project,
which aims to provide a range of services and education to respond to the significant unmet needs of remote communities afflicted by poor health and to engage in health promotion to help reverse the current trends. The speech was broadcast by the ABC.

The transcript:

It is a daunting privilege to be here and speak of the things that have animated my life and weighed on my mind for many years.I imagine that there is no-one in this room, or listening, who is not mindful of the fact that this place was once where the Gadigal people made ceremony, fished, hunted, made love and laughed. And that their descendants can be found in Redfern and Blacktown and beyond. We pay our respects to them.

223 years ago, a few days after the First Fleet disgorged its human cargo on these shores, there was a poignant and sublime moment. Down at what we know as Circular Quay, a group of Gadigal men were seen dancing with some soldiers and convicts. Dancing together. It was a glimpse of what might have been. It will soon be captured in bronze by Anthony Symons in a work of art called Dancing with Strangers. In that spirit, let us dance together with strangers, and dance, perhaps, with some strange ideas, for the next hour.

Clive James once wrote that “The getting of wisdom is a hard road. Most of us are not equipped by nature to travel it at high speed, and some of us must crawl like babies. Our chaffed hands and knees can make us wonder if the journey is worth it. The grim and edifying realisation is that a complete picture of reality is not to be had.”

Any mistakes in this talk are mine, any truths and useful insights are simply what they are. There are many here who have witnessed and supported my journey these last years. To you I express sincere gratitude. To those I don’t know let me say thank you for coming. I hope that the ideas I will engage with are of real value, and that the time we spend together will be time well spent.

First some disclaimers. I’m not a doctor, not a celebrity and not [clearly] an Aboriginal. I am an ordinary man. I make no claim to speak universally for our Indigenous brothers and sisters – especially as a white fella. That would be presumptuous in the extreme. And no Indigenous person would speak for another – no Warlpiri man would speak for the Yolgnu, no Bungulung woman would speak for the Wiradjiri. But I do speak as someone who gives a damn, and knows that this nation should do better and CAN do better.

Over the years I have come across pieces of a very complex jig-saw puzzle. I don’t know how many pieces make up the entire puzzle. Some have been irretrievably lost. Some people here or listening hold other pieces. But I will lay out what I have and see if some pattern emerges that perhaps provides some insight, some wisdom and, perchance, the capacity to respond in ways that enhance all of us. I hope my stories and observations allow some light to enter through the cracks of our world views.

I have been to too many speeches where all I heard was complaint and no constructive ideas for the future. In that respect I share the national fatigue with stories of our First Nations peoples. What I don’t share is any thought that nothing can be done.

Christopher Hitchens recently wrote: The usual duty of the “intellectual” is to argue for complexity and insist that in the world of ideas things should not be sloganised or reduced to simple formulae. The other responsibility is to say that some things are simple and ought NOT be obfuscated.

For all these reasons I have borrowed the words of a passionate social justice warrior, John Falzon, the CEO of SVDP and called this address “Not bleeding hearts, just the bleeding obvious”.

I am all too conscious that there are any number of people out there who have deeply held convictions about what’s right and what’s wrong when it comes to Indigenous and non-Indigenous matters. Some will be pleased with my thoughts. Some will not.

But I want this to be a conversation, not a polemic or a diatribe. I may just be right about some things, I may be wrong about others. The challenge for me – and you – is to sort out which is which.

I want to journey through a range of connected things. To tell some yarns about the way we make sense of the world we live in and the one we have constructed, some key things that are “evidence” in the great debate about “evidence based policy”. I want to talk about the very specific responses of my organisation – The Malpa Project – the “friends” project. And then I want to be so bold – or foolish - as to propose a fresh framework for a serious and effective way for Indigenous peoples, governments and NGO’s to walk together and to work together.

We have come here tonight walking, in some senses, in the footsteps of a most remarkable man. He was wealthy, idealistic, pragmatic, romantic, visionary, humanitarian, eventually a derelict. A life which reverberates even into the lives of Indigenous Australians in our time. Jean Henry Dunant was a thirty one year old Swiss funds manager getting on with doing whatever funds managers do. The fateful year was 1859.He went to lobby Napoleon III to gain trading concessions in Algeria. The rendezvous was the small Italian town of Solferino, about two days march west of Venice. But there he came across something that shook the foundations of his world.

He witnessed the grotesque horror of battle. In this case the human carnage instigated by Napoleon himself. 40,000 soldiers – about the number of people at a Swans football match - lay strewn, dead or wounded, across the otherwise picturesque countryside. There was no-one to provide help.

Jolted, he set about doing what he could for the wounded and organising others to become involved. In time he returned to Geneva, haunted by the experience.

He then gathered his extensive network of high powered colleagues and put all his business acumen to use to create the extraordinary organisation that is the Red Cross. International momentum grew and the rest is history – an organisation that strives to personify humanity at its best.

But his personal life became one of utter poverty. A journalist stumbled into him in a decrepit hostel and told his story to the world. So in 1901 Henry Dunant was awarded the very first Nobel Peace Prize. It’s deeply ironic that Nobel, breathtakingly rich for his exertions as an arms merchant – sometimes referred to in his own lifetime as “the merchant of death” should confer such an honour.

Dunant never spent a pfennig of the money.

His legacy is worthy of an entire speech – the International Committee of the Red Cross – perhaps the world’s greatest humanitarian organisation, the Geneva Conventions... and much more. Summed up in your slogan “The power of humanity” An extraordinary legacy by any reckoning. Henry Dunant’s life is a tale worth the read. It’s that of a passionate man who has seen the wickedness that mankind can do to their fellow creatures, and couldn’t turn his back regardless of what sacrifice that meant. His final words were “Where has humanity gone?”

Now I can’t help wondering how Henry Dunant would react if he were on business in Alice Springs, and instead of the bitumen road into town he took an unscheduled left turn into one of the many Town Camps? Confronted with the squalor, the naked children with their snot smeared faces and blocked ears, the old women huddled around the fire, the men absent [many in jail] the cinder block houses with no doors, water or electricity. I wonder what he would do?

Like most of my generation, when it comes to Indigenous Australians, I was bought up on a diet of what the anthropologist W E H Stanner labelled “the great Australian silence”. The expression describes the timidity about the on-going collision of the First Nation’s peoples and those of the invaders. [Stanner was the man who suggested to Gough Whitlam that he symbolically drizzle soil from his hand into that of Vincent Lingiari. Stanner was a man who understood many things.]

When I first visited a town camp on the edge of Alice Springs the words of the social activist Gloria Steinem rang in my ears: “The truth shall set you free, but first it will piss you off”. That was many years ago. I am still pissed off.

And so I invite you to step behind the curtain of silence that hangs between the lives of Indigenous and non-Indigenous Australians.

We begin in the Centre of the nation – the very heart of our country. The Arrente, Pitjantitjara, Warlpiri, Pintubi and others now share the same continent we do, but the way they see their universe – the prism through which they see reality around them and the world within - is actually more than a little different from ours. And it’s here that we can perhaps find a clue to about how we engage in health care.

Travelling across Australia it’s not uncommon to see collections of large football-shaped boulders in clusters. They are usually called “The Devil’s Marbles.”

But Indigenous often people call them The Eggs of the Sacred Rainbow Serpent.

Aboriginal people see them as sacred and life giving. European explorers thought they resembled something that Satan had spewed out of the bowels of the earth so they call them “The Devils’ Marbles” Through the prism of western religious myth and science they were labelled as profane.

The very stories at the foundation of our cultures are so diametrically different.

The foundation story of western culture tells of the Garden of Eden with the snake as a tempter and destroyer of harmony. The Indigenous culture has the Rainbow Serpent as the central creative force behind all life. The snake is sacred.

One senior Aboriginal man joked that he knew Adam and Eve were not Aboriginal, because given the choice of an apple or a snake to eat Aboriginal people would eat the snake every time!

Why does this matter? The differences are not simply curiosities. They have a powerful way of working themselves out in a manner that influences matters of life and death. Let me explain. On the road out of Alice Springs is a memorial to the famous Reverend Doctor John Flynn. Flynn of the outback, founder of the Royal Flying Doctor Service. The original boulder of this memorial was taken from the group of rocks that Aboriginal people call Karlu Karlu, which is Caterpillar Dreaming.
It was done against the wishes of the Kaytetye and Warumungu women whose families have been responsible for that dreaming long before the Pyramids were built.

It’s a little ironic that a man who had a policy banning Aboriginal people from the Australian Inland Mission hospitals should have such a memorial. None the less, when he died this memorial was built.

The women who were responsible for protecting these rocks protested. For twenty years those women fought to have the egg returned. Eventually, in 1972, the authorities relented. The women, as an act of good faith, offered another rock to replace the original. The authorities, in good faith, decided to clean up the old one a little before returning it. When it arrived back in its place the colour had changed from rusty red to white. The people were mortified. The ancient story is that when one of the Rainbow Serpent eggs turns white, then the Dreaming begins to end.

But surely it’s only a story, superstition, a myth? Now I’m just a white fella with only partial knowledge. But here the Dreamtime and the facts actually collide.

It was about this time that we can trace a dramatic plummet in the health status of Indigenous people in the Centre, a plummet that Professor Paul Zammit [the head of the International Diabetes Institute] says is likely see the end of all these people within fifty years.

And it’s this range of world views that impacts directly and materially on the success, or otherwise, of modern western medicine. Now many Aboriginal people in Central Australia even the narrative of illness is very different from the one described by western clinicians. Western Doctors would say that kidney disease, for example, is out of control because Aboriginal people make poor choices about food and exercise. For many Aboriginal people the causes are personal and spiritual.

They feel they have been cursed. To make things harder, they regard the kidney as a special object in the body, and I say “object” because it’s regarded as a sacred place where the spirit – the kurrunpa – lives. Sick kidney, sick soul.

It certainly is a curse to have kidney failure out here. The endless treatment requires a person to spend five hours every two days having all the blood in their body dragged out by a machine, cleaned and put back in about five times over.

To get that treatment you have to leave home, travel as much as a thousand kilometers across the dessert and stay indefinitely in a strange town. This seems like a one way trip, and for most it is. They are strangers in a strange land – health refugees who might just as well be on the moon.

In Alice Springs is the largest dialysis unit in the southern hemisphere. Here more than two hundred of our First Nations people are locked into the demands of the machines and their bodies. Their expressions show depression and hopelessness. The light has gone from their eyes. Most don’t comprehend the situation in medical terms. Most understand it in spiritual terms. Collective existential despair.

And too many health providers have poor comprehension of their patients world view.

This is the daily reality of the Pintupi people who live in their beloved Western Desert. The remnant of their tribe were the last people to encounter white people. That was 1984.

Late one night at the Flynn Drive Dialysis Unit I was talking with some Indian renal nurses. They mentioned that the patients had given them, “pet” names, which they thought was sweet. In fact the patients, so profoundly grateful to the nurses for their care had given them “skin” names – Nampitjinpa, Napaltjarri, Nangala – names which reach out and embrace the stranger into the family of the Warlpiri and the Pintupi. What more wonderful gift can be offered. And no-one in the health service had given any cultural training for the staff so they could feel the generosity of this sweet gift of inclusiveness. That was as recent as 1984.

Eight years ago seven of the five hundred people had kidney failure. Today there are nearly forty. It’s enough to crush anyone’s spirit. The Ngangkari – the traditional healers in Central Australia – say that they get their healing powers from the spirit world. To become a Ngangkari entails an extraordinary, and alarming prospect.

Part of this timeless and complex experience involves the removal of all the novitiates internal organs, lungs, liver, heart, the lot. They are replaced by quartz, grass and stones. They are then taken up to the Pleiades – the Seven Sisters constellation – and given instruction and special powers.

Now the Ngangkari say that at night they physically turn into eagles and fly around looking for sick people. They heal by using their hands to open people’s bodies – surgery by fingers – and then remove the stone or wood or obstruction that holds the sickness.

Currently some of these people are paid by our health system to work in hospitals in Central Australia.

The Ngangkari say that the one thing they cannot fix is the kidney.
The kidney has no physiological function. It’s where the soul resides.
You may be thinking that these are primitive superstitions?

But it’s sobering to reflect on how deeply myths pervade even our lives.
To an outsider we have some strange myths at the core of OUR sophisticated Western world view.

In Westminster Abbey where Wills and Catherine were recently married there is the Coronation Throne. Here all English and Australian monarchs are given authority to rule over us. Underneath the throne is a rectangular rock called the Stone of Scone, the Lia Fail or talking stone.

It’s believed that this was the pillow on which Jacob laid his head and dreamed of angels ascending and descending from heaven. It’s also believed that hundreds of years later the prophet Jeremiah brought the stone to the British Isles. This is the stone that legitimises the head of our nation. No stone, no head of state.

Superstitious?

Indeed, in our world there are two billion people – two billion - who believe that anytime they chose they can talk to a man who died two thousand years ago. They say that when he died he went up into the clouds and he will help them when they get sick, or when they want to win a tennis match. One day, they say, he will come back and make everything all right.

These people are called Christians.

I mention this with the greatest respect. I used to be a follower.
I believe we miss something profound if we don’t engage in trying to understand these alternative world views seriously.

My daughter Alice [who, incidentally, was a co-founder of the Humanitarian Week that Sydney University stages to this day] and I were out bush tucker hunting with Marlene Nampitjinpa and some dialysis patients way out in the Western Desert.

The car got bogged in the red sand.

We had broken every rule: no water, no food, no emergency “Epirb”. And no-one knew where we were.

It was 45 degrees and it looked like we would be an item on the national news next day.

I timidly asked Marlene if we should light a fire [I remembered my old scouting lessons]. She agreed, but as I lit my little twigs she got a handful of dry grass alight and walked through the scrub setting ablaze enough of the bush to be seen in Darwin.

And then the wind changed. And a wall of fire about fifty meters long came straight at our car and us!

I truly thought we were gone.

But Marlene walked over to the fire, completely composed. She stopped about ten metres from the conflagration and started talking in her traditional language.

The fire turned and went away from us.

Flabbergasted I asked what had happened.

She explained, matter-of-factly, that this was the country of her Mother and her Grandmother and she told them she wanted the fire to go away.
I felt I had watched the Red Sea parting.

It made no sense to me then, or now.

But it happened.

The world we live in, and feel we understand so clearly, is much more mysterious than we often suppose.

One person’s reality is another person’s superstition.

Without comprehending the magnitude of different cultural outlooks – and without often understanding our own – we make it artificially difficult to create the kind of society we think we are as a nation – or the one we want to be.

We speak at cross purposes and wonder why no authentic communication is taking place. And there is real frustration when our best efforts make no tangible difference to other people.

The war poet Edmund Blunden once said “This WAS my country, but something came between it and the sun.”

For Indigenous Australians, that something was us.

Some years ago I had the sobering pleasure of travelling around Indigenous communities with Jimmy Little for about three years whilst helping to set up his foundation.

Once when we were travelling together in Alice Springs I met the Northern Territory Health Minister asked what his plans were for addressing the extraordinary incidence of kidney failure.

Kidney failure runs at about 30-50 times the national average out in the Centre. He said he had no plan.

I mentioned this to Jimmy over breakfast the next day and he said the only hard thing I ever heard him say.

He began with “There is a plan”. What is it I asked, eagerly. His reply lives with me. He said “The plan is not to have a plan”. The plan is not to have a plan.

Anyone concerned for the social justice that Indigenous people are often denied would constantly hear the cry that “Nothing that we do ever works”.

Certainly if you were to spend time in the Todd River bed tonight you would encounter people who seem hell bent on drinking themselves and their culture to oblivion – drinking “against” authority as someone observed.

Interestingly there was a time in Europe, the 1920’s, when one George de Lapouge, a French anthropologist suggested that alcohol be provided free of charge in the hope that the worst types of people might kill themselves off in their excess. I sometimes hear echoes of that in the Australian public conversation.

My experience is that there are many people who know exactly what can be done. They have developed wonderful road maps.

Let me tell you some of their stories and then draw out some lessons about what can be done, what will, in my humble opinion, work – and paint a picture of a potentially new relationship between governments and Indigenous people.

I must say that it gives no-one any joy to be the constant bearer of bad news.

The passion and commitment of so many decent people out there is constantly being tested. Keeping up the energy and the enthusiasm is a constant battle and it shouldn’t be.

Politicians and bureaucrats, naturally, don’t enjoy being criticised. But if the response is to shut out those who criticise then they are making their work even harder and setting themselves up for more criticism.
Anthropologist Yasmine Musharbash relates a prescient story – a parable almost - about the way government often responds.

With drinking spiralling out of control in Yuendumu, north of Alice Springs, the local policeman set up a road block on the bituminised Tanami Road to collar the grog runners. When Jasmine pointed out that all the grog was coming in through the back road he nodded and said he suspected as much, “but since we don’t know the back roads we’ll just put up more road blocks on the main road”.

In one community they called the new Government business manager “The Egg”. On arrival he disappeared into his gleaming white new house, instructed not to mix with the locals, and everyone was waiting to see when he would be hatched and actually come out and talk! He didn’t want to hear what people were saying. A common ailment.

The resistance of the federal government to even releasing the Strategic Review of Indigenous Expenditure is a case in point. It was their own review but it said things it didn’t want us to know. They tried to bury it.

One of the definitions we taught our journalism students years ago was “News is anything that someone wants to keep secret – all the rest is public relations”.

Thanks to 18 months of determined journalism and Freedom of Information laws we can now all read it and it’s clear why someone didn’t want us to.
The words that feature prominently are appalling, dismal, neglect, waste.
But I believe the serious lessons are there for anyone who has eyes and ears. This is the “bleeding obvious”.

The very idea of child abuse in the Northern Territory tore at the consciences of almost every Australian. Children’s safety is a non-negotiable area in this nation.

The Little Children are Sacred report which brought the issue into sharp focus went on to provide a comprehensive, sensible, do-able road map to address the issues identified. Ninety seven carefully thought out steps.
The response was to sweep them all from the table and roll out the army. Two days after the intervention was announced I was in Kintore, about 500 kilometers west of Alice Springs.

It’s a community whose commitment to their own wellbeing is so powerful that when governments refused to help them provide much needed dialysis services for their people, they raised over a million dollars themselves and started their own clinical services.

After years of opposition their services are now regarded as “best practice”. Some senior women told me that on the day that the Intervention was launched, through a twist of accidental planning, two Abraham’s tanks were spotted being transported through the area. The women swept up their children and took to the hills. You would. I would.
Community empowerment 101 says that those affected by a decision must at least have the courtesy of having that Intervention clearly explained.
This courageous and resourceful community was NOT one of those selected by government for further funding initiatives. They have been selected to rot on the vine.

But the intervention saw a tsunami of big city experts sweep in and perform a flurry of health checks – even when most of the children’s medical records were freely available at the local health clinic. They didn’t think Prof Fred Hollows dictum of “no survey without service” – bleeding obvious, really - was worth considering. They did the checks and left town. I saw the kids two days later and nothing had been done.
One of the important objectives, so the story went, was to try to identify the children who were at risk of mental health problems. Fair enough.

So qualified people from the big cities were flown in to do this.
They did about 2,000 checks.

The results are worth noting.

Just seven needed attention. Seven.

Some national emergency?

Two were already receiving the care they needed.

A further two needing mental health services were actually staff who been involved in the assessments. They had been so traumatised by the experience and wanted follow up counselling.

The reviews of the Intervention by the Australian Indigenous Doctors Association, the Fred Hollows Foundation, the Australian Medical Association affirm the words of the World Health Organisation view: Indigenous health in Australia remains the worst in the world.
The Intervention has failed. How could it not?

It was based on the flawed assumption that the source of the dysfunction resided solely in those communities.

With some notable exceptions - like the introduction of Opal fuel - nearly every other top down attempt has failed to help.

Recently a report was commissioned into the response to the explosion of kidney failure in Central Australia. Kidney failure is ripping the life out of communities out there.

If the same rate of kidney failure were happening in Sydney it would mean that everyone, everyone, in Mosman, Hornsby, Parramatta and Newtown would be doing dialysis treatment.

The experts were called, those who have been delivering the services the people affected, all extensively consulted by researchers who know the issue intimately. Researchers whose credentials were beyond question.
Their report – all $550,000 dollars of it - was due to be made public last February, had 79 detailed and practical recommendations, was regarded as “not good enough for publication”.

Four months later the heavily redacted final report comes out. It has almost nothing in it that was not known five years ago.

76 recommendations have vanished.

Just three are left.

One of these has been partially funded.

I wondered why.

I called the minister’s office and was told that this was the first step.
When I inquired what the next step was the reply came “we haven’t thought about that yet”.

But yesterday, by chance, I found out what the next move actually is.
The plan is to defund the aboriginal organisation who were the key movers in getting the report done. A multi award winning aboriginal body who has been delivering best practice for a decade.

Is it any wonder that Aboriginal people government workers the m “the cuppa tea mob”?

What was that again, Uncle Jimmy? “The plan is not to have a plan?”
I think everyone who cares about these things were heartened when the Federal Government announced the creation of SIHIP – the Strategic Indigenous Housing Investment Project.

Everyone cheered when it was to be rolled out. Finally, the deplorable state of Indigenous housing was about to be fixed up. Housing, recognised as the fundamental building block of improving health was being taken seriously.

What was less well known was that a truly imaginative and effective organisation called Health Habitat had been beavering away with meagre funding for nearly twenty years addressing this very problem.
Architect Paul Pholeros, Doctor Paul Torzillo and Stephan Rainow had mobilised tradesmen, students and others to go to Aboriginal communities and roll their sleeves up to fix the houses so neglected by the landlords.

They learnt from the Aboriginal people as they went along, understanding what works and what’s a waste of time.

Oh, I know the cliché that Aboriginal people just rip of the windows and use them for firewood [what can you do?]. The fact was that only 9 % of damage they encountered had been done by the tenants. The facts were also telling them that only thirteen percent of Aboriginal housing had running water, electricity and sewerage. Thirteen percent. And this is in the richest nation in the world!

Anyway, over the years the Health Habitat mob had been going to communities all over the nation and, with the local people, fixing them up.

Quite simple really.

Might even call it bleeding obvious.

And it was probably the single most effective health intervention imaginable. The NSW Health Department published an independent assessment of the ten year program that Health Habitat did in that state. It found a forty percent drop in the number of people admitted to hospital for infectious diseases.

Incredible, but not surprising.

Back to SIHIP.

Their Groote Eylandt project is an interesting case in point. The budget was a healthy $60 million. In August 2009 a government report found that $45 million had been spent and not one house had been completed.

This is our money, folks.

Now cut back to Health Habitat. They were getting on with fixing houses for about $ 7,500 a time. Three quarters of their workers were Indigenous.

Meanwhile the SIHIP program was costing $ 75,000 for every house – AND the done-up SIHIP houses that Health Habitat tested failed on seven out of ten criteria.

A little while ago the government commissioned an audit on Health Habitat. It was deemed that they were no longer needed as suppliers of their services.

In June the funding dried up.

Cuppa tea mob.

But we know that good change CAN happen.

Indigenous people are not simply sitting around waiting for help from Canberra. Given the chance they will do remarkable things.

In 1995 someone decided to actually implement a comprehensive, carefully conceived health initiative.

The beneficiaries were to be the Tiwi Islands.

The health status of the people there was as poor as existed anywhere.
This time the plan was to involve the community in the design and running of the scheme.

The program was a carefully conceived Co-ordinated Care Trial.
The minister announced that “This trial will have a whole of community health approach. Public health and health promotion and education programs will play an important role in improving health outcomes for the Tiwi”.

The result in three short years was astonishing.

Incidence of kidney failure reduced by about 50%.

Heart disease by even more.

Diabetes – as high as afflicting 80% of some Indigenous communities, slashed.

By every measure things had dramatically improved.

The glossy government brochure boasting of the success even said that several millions of dollars in health costs had been saved!
A resounding success. You probably know by now that this will not end happily.

The government then decided not to fund the Trial any further. Within a short time all the health statistics were back to where they were.
The people had risen to the challenge and the opportunity.

Would they ever bother to do so again?

Their resilience is extraordinary, but it has limits.

Now anyone involved in this knows that the problems are enormous.
Governments have tried.

At Mutitjulu, for instance, the Aboriginal settlement that sits in the shadow of Uluru, live about 150 people. The community has a police station, a health clinic, a manager’s office, a women’s refuge, a school and youth centre.

Being right next to our great national icon meant that international media attention necessitated we throw money at this community in ways not seen in other communities.

But our national economy simply cannot support those levels of services for every 150 people.

Mind you, we are talking about a Northern Territory Indigenous population who could comfortably fit into the stands of the Sydney Cricket Ground.
An outside observer could be forgiven for thinking that addressing these problems would not be beyond the capacity of our rich and talented nation. In South Africa the government has built 2.8 million houses since 1994.

Then again someone reminded me recently that the issues of social justice that we struggle with today - poverty, health inequity, the poor distribution of wealth and opportunity - are exactly the same ones we struggled with forty years ago. Is progress such a conundrum?
Has nothing changed? Was the Galilean carpenter Jesus’ comment that “The poor will be with you always” the most incontrovertible long range social observation ever made?

So let me give you some solid information. Some things that are not a matter of opinion or interpretation – and then I want to propose a constructive framework for a relationship between government, NGO’s and Indigenous people that seems so bleedin’ obvious that it will be no surprise.

When I was preparing this talk I was determined to be calm and moderate. I know that people drown in stats and often put their fingers in their ears when it comes to Indigenous health issues.

I was going fine until I dug into the motherload.

But let’s look at this another way.

Imagine if nine in ten Australian kids were functionally deaf?

And what would we say if 93% of kids in Lane Cove or Balwyn suffered from Otitis media?

[The World Health Organisation says that if more than 4% of kids have middle ear infections it is “a massive health problem”.]

What if eight in ten students of Kings School, for example, had decayed or missing teeth but had to wait 14 months to see a dentist?

What if the rate of Sudden Infant Death Syndrome – SIDS - was eight times higher?

What if only thirteen percent of homes in Rose Bay and Toorak had water, waste, cooking and cleaning facilities?

This is the parallel universe which is our Northern Territory backyard. This is the reality that our Indigenous brothers and sisters live in.
Another world record while we are at it – we are the only developed nation where you can find trachoma, which can cause blindness. 25 % of Indigenous kids suffer from it!

Nearly four in ten Aboriginal people are under the age of 15. Anaemia and malnutrition are 30 times the national average.And perhaps most poignant - many kids in Central Australia have been to 100 funerals by the age of ten.

I asked my dear friend Nora Napaltjarri what I should say about this on this occasion. She said “You should growl at them”.

I don’t know exactly who she meant: the governments? Us?

If this were your family - or mine - a mixture of shame and incandescent rage would be appropriate. If I treated my family like this I would be jailed.

At the risk of sounding New Age - these ARE our family.

According to the World Health Organisation Australia is the only place on the planet where Indigenous health is going backwards!

Governments have had 222 years to get this right. On any evaluation, governments have fallen seriously short.

Every indicator says government is not capable of solving this alone.
The recent AMA Indigenous Health Report Card says:

So far, the reforming of Australia’s primary health system has paid scant attention to the health of Aboriginal peoples and Torres Strait Islanders. Planning or implementation has not been conducted in genuine partnership with Aboriginal peoples and Torres Strait Islanders. This perpetuates an unacceptable approach to policy.

If private industry – or even community groups – had 222 years of operations with the results that governments have had they would be bankrupt or run out of town.

Sadly, Government is largely distrusted by Indigenous people. That is the simple reality.

But government is not the only player.

The fact of the matter is that all wisdom does not, and never has, resided in governments.

The wisdom is spread across Aboriginal groups, governments, NGO’s, whitefella groups, individuals.

Government MUST look beyond itself or risk being held responsible for unacceptable pain and suffering in people’s lives.

Michael Dillon and Neil Westbury commented in their powerful book Beyond Humbug that “Changes must be initiated with Indigenous people’s informed consent, in ways that resonate with their views of what is legitimate and in ways that gain their support. This will not happen by coercion and imposition.”

Last August I was in one of the town camps around Alice Springs. It was freezing and many people were sleeping on the concrete verandas around their houses with fires burning.

There was a small child’s head pushing out of a smelly pile of blankets.
Now I’m used to seeing a hollow stare in children’s eyes.

But this time I saw what could only be called bewildered anger in the eyes of this three month old kid.

Her mother had apparently simply left with a new man two days previously and now the aunties had to cope.

No change in clothes. No proper food.

They were doing the best they could. It wasn’t much.

People could look at this and be forgiven for saying “The mother should be reported.

The child should be handed over to DOCS.

What’s all this stuff about loving Aboriginal families?

Why don’t the other people do something?”

But there are other, perhaps better, questions.

Why is this happening?

What could cause people to be so emotionally detached?

I recalled what some doctors had mentioned to me. I was witnessing Post Traumatic Stress Disorder.

Let me briefly explain.

Post-traumatic stress disorder is a type of anxiety disorder. It can occur after people have seen or experienced a deeply disturbing event.
I saw a little of it as a child. My father suffered from it after the Second World War.

It manifests in things like an inability to focus, numbness, rage, violence, hopelessness.

For parents it means they find it hard to connect with the children they love. It is not just emotional. Doctors say that neurological pathways simply do not form or function. People are physically and mentally incapable of thinking and feeling as people are meant to think and feel.
Doctors say the reactions are one of Fight, Flight or Freeze.

I keep seeing “Freeze”.

PTSD can occur at any age. The medical journals say that it can be caused by things like

• Assault
• Domestic abuse
• Prison stay
• Rape
• Terrorism
• War

Uncle Bob Randall says:
You took my Ngura – my country
You broke my Walytja – my family
You banished my Tjukurrpa – my philosophy of life,
And you crushed my Kurrunpa – my spirit.

So I would like to add to that medical list of cause “colonisation” or “invasion”.

You see it in the streets of Alice Springs. Aboriginal people shuffling along looking like they are sleep-walking though life.

• Emotional "numbed," as though they don't care about anything
• Feeling detached
• Being unable to remember things
• Lacking interest in normal activities
• Feeling like there is no future
• Feeling irritable or having outbursts of anger

So it would surprise no psychiatrist that there are major problems with

• Alcohol or other substance abuse
• Depression
• Related medical conditions
• Suicide

The responses – I avoid the word “solutions” - call for serious levels of support.

There is an expression that is heard often these days and it goes like this.

“I think we should just move on from all the sad stories and pain? We’ve got to look to the future.”

This from people who will buy the latest book on Gallipoli, nod approval when we spend millions to dig up the bones of soldiers in France and ceremonially bring them home for burial. Knowing our history is part of being human.

Not understanding, or avoiding understanding, means we remain, as the old proverb would have it, children.

Now we at The Malpa Project are not simply barrackers on the sideline. We have spent considerable time learning to understand what does and doesn’t work, what’s welcome and what’s not. As well, we have spent considerable time devising a realistic, carefully conceived and culturally appropriate response.

The Malpa journey – the journey of friends and companions together - began when two senior Pintubi women were staying at my house.
I had an old dialysis machine in my study – as you do – and I invited them to paint on it.

They dropped all their plans and set about decorating this life-giving machine with a range of traditional and contemporary stories that spoke of their experience of kidney failure in their community.

I showed the machine to the manufacturers – Fresenius Medical Care - who I thought might be interested in using it in their foyer.

Immediately they proposed that were get four more painted. In partnership with Transplant Australia the project was launched.

So off to Alice Springs I went.

Four people were invited to paint on four machines.

They came at dawn, wouldn’t stop for lunch, and worked until sunset. Talk about a work ethic!

The people were so swept up by the idea that someone out there was interested in understanding what THEY made of what kidney failure meant to them.

We were touched that from a starting base of four people painting we ended up with about twenty – including the renowned artists Paddy Stewart whose great work is the huge mural outside Parliament House in Canberra.
Paddy is a dialysis patient.

The machines became a big hit.

They were taken around the world, Rome, Hong Kong – one is now ensconced in the glittering foyer of the headquarters of Fresenius in Bad Homburg.
The stories were so powerful that a further four were commissioned. This time they were painted in the town camps around Alice Springs.

The people were finally being heard. Their narrative of sickness was being understood and appreciated. The sense of pride and self respect that became evident in those involved confirmed our hunch that we ought to empower people to take control of their situation.

It’s been clearly established by research that the need for health literacy is pivotal in delivering successful health outcomes.

The heart of health literacy is transparent communication between clinician and patient. The gulf between many Indigenous people and health practitioners was recognised as a serious inhibitor of good health. Now the patients – the people – had a chance to be heard and understood.

This experience further confirmed what we had come to know. If Aboriginal people are given half a chance, particularly if their culture is respected, then they will rise and achieve powerful things.

Then along came an idea whose simplicity and suitability was absolutely compelling.

In 1978 the World Health Organisation started a concept designed to address child health in third world countries. Children were taught about basic health and deemed to be “child doctors”.

In Nepal there are more than 2,000 child doctors. They can also be found in Egypt and Indonesia.

When the Tsunami hit Aceh some years back there was no outbreak of cholera as expected. None. Evaluations said this was entirely due to the Child Doctors.

My friend and colleague Dr Sabine Boes introduced me to this idea. As I discussed it with Aboriginal elders it became clear that if this approach were adapted it would resonate strongly with the way the Indigenous people have been doing health since the dawn of time.

Our project is called Tjitji Doctors – Child Doctors.

It synchronises with the traditional ways of delivering health. The Ngangkari – the traditional healers would look for young people with the right attitude and aptitude and train them in the ways of healing. Simple.

We found that when were went to the Town Camps there would inevitably be young pre-school kids running around with runny noses, runny ears and eyes. And they would have all manner of skin diseases. Often they were stark naked even in winter.

So why don’t parents take them do the doctor? Seems that many people in the town camps and even in the communities are often afraid of the white doctors. And many doctors are afraid to go to the camps. Stalemate, except the kids suffer.

Research shows that the high burden of preventable respiratory, enteric, ear, eye and skin infectious diseases among Aboriginal children in remote communities can largely be attributed simply to poor personal hygiene and unsanitary living conditions.

Researchers argue that there is sound evidence to suggest that interventions focused on education and hand washing are likely to “provide the greatest opportunity to improve child health outcomes in remote Indigenous communities”.

What to do?

It works like this.

Ngangkari, elders, western clinicians and student doctors select 8, 9, 10 year olds and give them primary health care skills. They learn about hygiene, simple First Aid and bush medicine.

And they learn protective survival skills to deal with the difficult situations which arise all too often in communities.

The project is done in a fun and engaging way using art, music, drama, role playing, bush medicine gathering – everything to make learning engaging. Our Tjitji Doctors are then supported to deliver basic health services to the young ones in their communities and camps.

The Child Doctors will then be involved in handing on their knowledge to other kids their own age. They become Health Ambassadors. This honours the traditional way of doing things.

Uncle Bob Randall said
These qualities are recognised as naturally occurring in young children, who are then chosen to learn along this path. Access to knowledge is always this: a combination of special talent and attitude to maturity. A four year old who is concerned about others will be chosen ahead of a fourteen year old who is only concerned about himself.

Tjitji Doctors is unique in Australia. It’s guided and delivered by Aboriginal people, themselves, with the support of non-Indigenous people.
This is bottom up.

We have consulted with every major Indigenous peak body from the Central Lands Council and the peak body for children, SNAICC, as well as the Australian Indigenous Doctors Association and the National Aboriginal Community Health Controlled Organisation. They all approve.

We are welcome in this space and everyone involved is either Aboriginal or has been given Aboriginal skin names in recognition of their long and deep commitment. We have also formed partnerships with Transplant Australia and the St Vincent de Paul’s Society.

We have begun work – pro bono in some of the Alice Springs Town Camps.
The project has many benefits. We believe it brings together all the wisdom of people who have engaged in these things over the years.
The most obvious is health improvement.

But then we add to that Indigenous employment. Community empowerment. Career development. Reconciliation. The list goes on.
Bottom up development.

The underlying principles which we used for our project have a significance beyond our modest attempt to be useful.

And it’s in the spirit of this, dancing with good ideas, that I make the following “Bleeding obvious” suggestions about how everyone who gives a damn – people, organisations and government, might move forward.

Let me conclude by being so bold as to suggest the “bleeding obvious”.....

• I invite governments to be courageous and to relinquish their iron grip on devising and implementing Indigenous policy.
• I invite government to operate in a totally transparent way.
• I invite them to trust those agencies that can demonstrate evidence of success built on genuine trust with Aboriginal and Torres Strait Islander communities and organisations, not least the Red Cross.
• I invite government to let go of the idea of imposing universal solutions and support those programs that respect and honour the multiplicity of cultural differences.
• I propose that there be a more nuanced approach to the policy of self determination which recognises that many Indigenous controlled organisations have valuable skills in service delivery but also the need to develop their management and governance capacity.
• I also challenge Indigenous organisations to welcome the involvement of non-Indigenous organisations and people, to encourage Indigenous and non-Indigenous relationships so we can walk and work jankujurra - together.
• I invite all parties to engage in real conversation. Conversations that involve risk because it leads to participation in the building of real community.
• Let us all resist simplistic solutions. There is NO simple solution – if there was it would have been done by now.
These things will require generosity, courage, honesty and long term commitment.

We CAN do this, understanding that we are called back to first principles.

What are the seeds our common humanity?

What right and decent?

And so I ask will our final words be tragic, like those Henry Dunant “Where has humanity gone?”

Or will we dare create something that people can point to and say “Now that’s what justice and decently looks like?”

The answer, I am convinced, lies with us working jankujurra – together - for humanity. And that, to me, is just “bleeding obvious”.

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Adj Prof Don Palmer Tjungurrayi ThL MA
CEO
The Malpa Project
0417 297 010/02 9499 3333
www.malpa.org.au
Twitter @MalpaProject