Another Country

by Nicolas Rothwell

  With his trademark energy and determination, Walkabout began planning ways of making this kind of kidney disease treatment available to others in his community as well as throughout the wider desert world. He made an educational video of great charm and force. He had dreams of establishing a special “kidney house” in Mutitjulu where a specialist malpa, or friendly helper, would assist a group of residential patients in checking the course of their dialysis. He spoke repeatedly to young men and women about ways of staving off the onset of renal disease and coping with the shadow that it casts over their collective life.

  Perhaps most critical of all, by reacting, and shaping a future, he showed his people there was a response beyond despair and turning one’s head to the wall. In the few years since the emergence of renal failure as the chief scourge of desert life, many old patients have tended to regard their only short-term option – life on dialysis in Alice Springs – as a form of living death. Treatment on the haemodialysis machines in the specialist unit fills traditional people with anxiety, while the town itself is so foreign to them, so full of Aboriginal drunkenness and violence, that they rarely thrive.

  “I myself found that blood dialysis treatment in town enervating, disturbing,” Walkabout said. “I had a catheter in my chest, and I was worried that my spirit might be going out with my blood. My blood was going in and out of my body, and I felt it was weakening me, the blood might lose its power. My idea was that the Aboriginal people on the unit in Alice Springs were as if kidnapped. That treatment could keep patients going, but never make people feel alive; they couldn’t think properly. They were being put on this treatment, and being managed, yes, in the Western way – but that way wasn’t what was best for us.”

  What’s best for desert people, of course, is to be in the desert; and as the number of patients in Alice Springs and other Northern Territory renal units multiplies, the need for some form of remote area dialysis has been mounting. Expensive satellite haemodialysis units have been pioneered; private foundations have been set up to raise money for remote treatment centres.

  Walkabout, though, served, during his time on the machine, as a ray of hope for those in the desert communities watching end-stage renal disease while it made its fatal inroads. For he was able to balance the dictates of treatment and his lifestyle; and, above all, to view himself as an example for the fellow patients in his world.

  “I’ve changed, of course,” he told me, rather disarmingly. “I’ve got this dependence on Western medicine now. Traditionally, men would live on kangaroos and bush foods and they didn’t have to do this thing of exchanging blood. We’ve lost the way of taking care of ourselves with foods from the lands – that way people could maintain their wellbeing by cooking the right things.”

  Hence the urgency of the system Walkabout pioneered at his home beside the tall flank of Uluru. Peritoneal dialysis, simpler than clinic-based haemodialysis, has been tried before in remote communities, but the technology is now so advanced it offers patients willing to comply with its requirements a new, long-term treatment option. “We have to talk about these things, about our sickness, so young people who are coming up can know about the direction their life might follow – they should learn about this machine.”

  And Walkabout told them. Half the time he felt a touch embarrassed by its presence in his life; half the time he felt it was good for his people to see it in action and learn its little quirks: how one had to wash one’s hands twice in different solutions before applying the water tube; how the black ants had a tendency to climb up the apparatus; how some patients needed an additional daytime filtration to keep their blood up to scratch.

  Down the track, of course, another dream was lurking in Walkabout’s thoughts – for dialysis is always merely a stopgap, and all kidney patients long for a transplant to free them, to return them to the flow of normal life. “Of course I’ve been thinking about that and praying about that, like everyone,” Walkabout told me. But he knew how grave the shortage of suitable transplant organs had become and how strict are the criteria for inclusion on the national transplant waiting list. “I could die anyway,” he said. “But for the moment, even if this treatment won’t cure me, it can keep the sickness at bay.”

  A few months after that conversation, he was taken ill, and evacuated to hospital in Alice Springs. Things followed a familiar course: he did not recover. His passing cast a shadow over the desert: that shadow seems to darken with each new death.

  *

  Deep in the Great Victoria Desert, in the tiny community of Irrunytju, the clinic whiteboard tells a tale. Here are the names of forty patients, neatly inscribed, with colour-coded dots beside them.

  Half of Irrunytju’s adult population of 120 have been given health screens in the past two months. Ten of this group show early signs of kidney failure. Another ten have progressed kidney failure and are well on the path towards needing dialysis.

  Twenty-six have diabetes; thirteen suffer from hypertension; six have heart disease; and thirty-one are overweight. The sickest age group is not the oldest, who had healthy bush lives in their early days, but those still in their thirties. The prognosis for these people and for their community, 700 kilometres south-west of Alice Springs, is not promising.

  Nurses and health workers believe the statistics would be similar in much of remote Aboriginal society, if anyone had the time or the resources to check.

  Yet the mood, the tone of life in Irrunytju is far from resigned or passive, despite the shadow hanging over the township.

  Glance beneath the tranquil surface and the signs of this fledgling resistance appear. Men and women on diabetic medication queue at the clinic in the main square for a morning blood sugar read-out. Nearby, the store, after strong community pressure, has cut back sharply on chocolates and prepared foods; fresh fruit, pasta and rice crackers are the new staples on the shelves. And around Irrunytju stretches a winding, well-maintained path: the “low-sugar track”, 2.3 kilometres long, the recommended exercise walk for all diabetics, kidney disease and hypertension patients.

  These innovations are not the result of some abstract, far-off threat. Almost everyone in the community has lost, or is losing, a loved companion, sibling, cousin or child to the phalanx of new diseases. The visitor at once notices the little groups of old men who live alone and sit together all day, having to go on without their wives – for kidney disease in remote Australia tends to be a sickness that afflicts women.

  One of these senior Irrunytju men is Roly Roberts, who was deeply in love with his wife and travelled with her to Alice Springs, in the last year of her life, for consultations at the renal unit. Together, the two of them decided against the long ordeal of dialysis in town; together they moved to the nursing home at nearby Docker River, where Roly lay beside his life companion, holding her hand, for three weeks while she passed away from end-stage kidney disease. “I was with her there all the time,” he says.

  Those in the community who are fortunate enough to see the disease pattern early are trying to take charge of their circumstances and lead by example. Among them is regional disability worker Linda Eddy (diabetic, hypertensive, heart disease), who has triumphantly reduced her weight, controlled her blood sugar and brought down her blood pressure.

  Another is Elaine Jones, a young diabetic whose family and social life is studded with renal failure. “I’m happier now, taking charge, checking my sugar levels every morning,” she says. “I’m making a big effort, but I’m getting worried about those kidney diseases. Most people my age are worried, too, and frightened. Now we don’t buy those big white sugar bags any more and the store has all the new foods, soups, rice, 98 per cent [fat-free] foods.” Jones’s husband, Stewart Nelson (diabetic, kidney patient), adds: “Yes, we’re looking after ourselves now, watching what we do.”

  Just how did Irrunytju’s health profile develop? Medical experts trace the general collapse in remote Aboriginal wellbeing to the end of the hunting life, the arrival of sugar-rich, poo
r quality food and the ingrained effects of economic impoverishment.

  Nursing sister Elke Zalfen, who has spent many years treating renal failure in the Western Desert, suspects the dramatic spike of kidney sickness in the middle generation here may be the result of scabies sores, which were not aggressively treated during the 1970s and ’80s. Perhaps the single truly encouraging sign in this medical environment is the relative good health of the Irrunytju children, who have few scabies sores on their bodies.

  Indeed, in the face of the renal failure crisis, the overall improvement in child and teenage health and the decline of infectious diseases are vital proof that change is possible, that positive outcomes can be pushed through in remote Aboriginal Australia.

  “We know this crisis is out there, but we haven’t got the resources to put emphasis on it,” Zalfen says. “The outside world thinks we have all these health projects going. The truth is there is so much urgent medical treatment going on we don’t have the time to run them. We don’t even have a diabetic educator.”

  Getting the message out in places such as this can require a degree of lateral thinking, especially as Western medical science is still coming to terms with the scale and mutual interaction of the diseases. But the Pitjantjatjara people who live here are acquiring a clear understanding of the dietary pathways that have brought them to their plight. They know that the sedentary existence they tend to lead is their enemy, as are the infections that spread in the conditions of community life. Zalfen likes to show her patients a schematic model of the human body, with two car-engine filters (Reyco Premium brand) as models for the kidneys. It’s a persuasive analogy and has hit home.

  Early one morning during my stay at Irrunytju, council member Wilton Foster (hypertensive), a man of great solemnity, called a men’s meeting to discuss kidney disease. About him gathered the senior individuals of the community, with their dogs and grandchildren in a wider circle all around. He ran through the factors behind the crisis: the effects of food, the “hooking” quality of sweet things, the harm being done by the new takeaway counter at the shop, the kidney’s nature as the weak link in the body. And there was more: the familiar plagues that were increasingly harming his people – drugs, grog, even tobacco.

  “Something has to be done, with our people,” Foster said. “We need to know, we need to be told that we are eating the wrong food. We haven’t all realised that we are getting sick and that we are the dying race. But we want to stay alive a bit longer. You see our people now with fat stomachs, walking slow, and I know why, and everyone knows why – the wrong food. We have to get the store managers throughout our lands to stock good foods.”

  Foster paused; the men around him nodded. “It’s the real bottom line to our life to realise we are living in this world with a lot of things introduced,” he said. “We, the old people, are going to go soon, but the younger people, they have to realise the danger they are eating and save themselves. I have high blood pressure myself and I’m trying to get away from that. We need to know we are walking and tied up to us we have a time bomb and one day it’s going to explode. We will never escape from that unless we educate our children.”

  The scene was one of great pathos, for in Foster’s audience, silent, were two men whose wives had died of kidney failure and associated diseases a short while before. It was a painful experience to listen as the Irrunytju leaders gave this assessment of their situation and of the only way ahead still left for them as guardians of their endangered world.

  Later that day, the regular Aboriginal Air Services flight from Alice Springs flew in and swept to a halt on the airstrip just beside the community. It was bringing back the results of another Irrunytju leader’s kidney screening. The news was not good.

  Lost for Words

  WHAT DOES IT FEEL LIKE, as an indigenous Australian, to speak your traditional language? June Oscar, the Bunuba-speaking head of the Kimberley Language Resource Centre based in Hall’s Creek, Western Australia, knows.

  “You can communicate your feelings in a way you can’t in English,” she says. “You can really hit things on the head, you can feel and understand what’s being said to you. When we’re using language in our country, we feel that country’s listened to this language from the beginning of time. I’m happy and proud to have the chance to do that; it’s different from everything else we do with the rest of the world.”

  And what does it feel like to have lost your language? Like many others, Danny Thompson, lead singer of the rock group Yugul, from Ngukurr on the Roper River in the Northern Territory, knows – he wrote a rap for his most recent CD, putting absence into words: “The last time my language was spoken was by my Dad, but he finished up in 2001. I didn’t speak our lingo; we weren’t allowed to at school. I still feel a strong feeling, wishing to speak my lingo. You have your identity if you have your language. If your clan doesn’t have language, then you feel like nothing. Being somebody is important.”

  Language extinction is the hidden holocaust under way in today’s Australia. There is no doubt, no ambiguity about what’s going on; the only thing that’s not quite clear is whether all Australia’s remaining Aboriginal languages will be dead in fifty years or whether a handful of the strongest – maybe some dialects of Yolngu-Matha in north-east Arnhem Land, and Warlpiri in the Western Desert, will survive in some form.

  A benchmark study, carried out by linguists Patrick McConvell and Nicholas Thieberger five years ago, traces the vanishing. Perhaps 250 distinct languages (with hundreds of variant dialects) flourished across Australia before contact with the European world. By 1980, one-quarter were extinct. By 1990, half were gone, or nearly so.

  By now, only about seventeen Aboriginal languages can still be classified as strong – used by all age groups. The percentage of indigenous Australians speaking their language is about 13 per cent, and dropping like a stone. Most of these native speakers – about 50,000 people – live in small, marginal, economically disadvantaged communities in the Top End, Kimberley and Central deserts.

  These figures are sketchy, though. The true picture may be darker still. Aborigines, in surveys or census checks, can tend to overstate their language skills; they are proud to know even a pared-back version of their grandparents’ many-layered languages.

  Discussions with indigenous language workers across remote Australia during the past few years paint a national portrait of deep linguistic vulnerability: the younger the Aborigines in bush communities are, the less likely they are to speak their languages well. Sometimes, a hybrid version of traditional language comes in. More often, a Kriol or English-based tongue makes inroads: indeed, Kriol, admired by some for its efficiency, derided by others as “newspeak”, is today by far the most common Aboriginal language, spoken across the Centre and North by thousands of people in its various regional versions.

  With each dying traditional tongue, a world view dies – a way of thinking, feeling, saying, that has been refined down scores of generations. If the desert Anmatyere people lose their language, who will know its special word for the white powder that forms on the mulga apple? If East Kimberley Mirriwong fades away, who will remember “jowaljobu”, the word for “the temperature that makes one feel good”?

  Recently, in acknowledgment of the crisis, the Foundation for Endangered Languages (FEL), the premier international body for language protection, held its annual conference in Broome – the first time Australia has been under the spotlight in this way. There were stirring accounts of language rediscovery in the Kalahari Desert. Fascinating, subtle questions hovered in the air: do indigenous people have the right to own their language and restrict outside experts from wholesale access to its deeper registers? Can linguistic communities be revived, along lines being tried in the north-west of NSW? How can Western educators help preserve threatened languages?

  FEL’s British-based president Nicholas Ostler knows what needs to be done. The pattern is similar across the world. To have a good chance of survival, a threatened la
nguage needs a home territory and a recognised political status. It helps if its speakers are isolated, have a strong literary tradition and a self-conscious cultural pride of the kind that has sustained Jews and Basques through centuries of exile or conquest.

  Aboriginal languages don’t have most of these things. In many cases, all they really have going for them is the will and courage of their last few speakers. David Newry, the determined chairman of Mirima Council in Kununurra, WA, who has run his Mirri-wong people’s language centre for more than twenty years, understands from his own life what having language means. “If I hadn’t been brought up the language way, I wouldn’t have been disciplined,” Newry says. “When people were on the stations, they used to enjoy their language. If you really speak it, it makes you as proud as any Hollywood actor. Kids today growing up the Western way are undisciplined. If a lot of the things associated with language were taught to our children, if they saw the traditional view, they’d be better off. If only people in the wider world knew about this, maybe they’d be kinder and help us more.”

  Language, in other words, is more than language, more than mere cultural identity; it is social order, and self-belief, and the backbone of a distinct philosophy. For fluent speakers, it’s not a relic but a way of shaping the future. Hence the fervent campaigns being waged by workers such as the Kimberley Language Resource Centre’s June Oscar. Maybe 100 of her 800-strong Bunuba people speak their language; she wants to double that total in the next twenty years.

  The methods of language defence are basic: recording the knowledge in old people’s memories, teaching the young, using every technique that works. Jeanie Herbert, the dynamic Warlpiri language queen from Lajamanu in the Northern Territory’s Tanami Desert, is blunt about what needs to happen: “It’s about time governments recognised that indigenous languages are really Australian and that English is just the language of the dominant society. We want our languages to be on an equal footing. I’d like to see Warlpiri people taking control of their lives, reading and writing in both languages.” A high ambition, even for Warlpiri, perhaps the strongest traditional language in Australia, with close to 3,000 speakers.