Kiwirrkurra is 700km of bad roads west of Alice Springs. I have been visiting the community during the last 12 months, as part of my work with a leading social services organisation. Its senior community members talk about the need to show the young men how to behave with their partners and families, and how to put their community first; how older men need to take these younger men out to country, sit down with them and share this hard fought wisdom.
Old people on remote communities are the glue that keeps them strong. They negotiate cultural and contemporary life in these places. When they pass away, the community suffers a tangible loss. The community becomes more chaotic. The emotional wellbeing of the whole community is destabilised.
Kiwirrkurra has lost a lot of its old people to renal failure either by death or distance. Renal failure, too, forces many women and men from their important roles. Many choose not to make the journey to Alice Springs for dialysis, seeing life away from country and family to be a fate worse than death.
Often people with renal failure don't come to town alone; many family members accompany them. This sense of family has both positives and negatives. The tight-knit family will add homelessness to its woes in overcrowded accommodation in Alice Springs. However they feel it is better to suffer together than in isolation.
Life on dialysis is tough. You are tied to the machine three days a week for five hours at a time. You feel tired and sick. The machine is an assault on your body, trying to do in a few hours what healthy kidneys do all the time.
These conversations have become more urgent recently because more and more older people are being told they have to go to Alice Springs to be put on the machine.
This is one of the ways the system fails these people. The Mandarins in governments of all colours calculate the cost of dialysis in term of cost to their individual departments, not across government. In Central Australia the cost of one dialysis patient coming to town is multiplied by the added burden to housing infrastructure in regional centres, increased health costs for family members accompanying the patients, increased law and order issues resulting from overcrowding and moving people from their traditional land.
Really they are issues that are faced by any population forced to become refugees. These people are refugees as they are essentially forcibly removed from their land to either stay alive or maintain family bonds and look after the person with renal failure. Politicians seem unwilling or lacking in courage to see these issues more broadly than their department or personal career ascendances, failing both the individual and broader Australian community.
I have been with many visitors to the 'Purple House' in Alice Spring impressed by the great work they do there. My partner has been the CEO there for a decade and in that time I have got to know many exceptionally strong Pintupi people fighting to get there people back to country. An Aboriginal community controlled health service, they began with an auction of paintings at the Art Gallery of NSW 13 years ago. They raised over $1 million.
Their aim was to improve life for dialysis patients and to return people home to participate in community life. Their name, Western Desert Nganampa Walytja Palyantjaku Tjutaku — 'Keeping all our families well' — recognises that if people are forced to leave their communities to access dialysis treatment, not only are they sick and homesick, but their communities are lessened too.
They deliver dialysis in Alice and in remote communities, currently Kintore, Lajamanu, Hermannsburg and Yuendumu. They are working hard, with little government support, to establish dialysis in Kiwirrkurra and Warburton. They take a holistic view of health and community. This is at odds with the corporate business of health care provision. But this is an issue of social justice not only for the people with failing kidneys but also for the communities they leave behind.
Jesuit Social Services are in this space also, working with the Atyenhenge Atherre Aboriginal Corporation in Santa Teresa and Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation to achieve nurse assisted dialysis in Santa Teresa. This has been promised twice now by government, but with the recent change in government, service agreements are yet to be seen.
Another exciting capacity building-project for both Jesuit Social Services and Western Desert Nganampa Walytja Palyantjaku Tjutaku is the development of a consumer group giving people in the territory on dialysis a voice so they can advocate for themselves.
Our society grapples with significant moral issues regarding refugees and climate change in the mainstream media on a daily basis. I see Aboriginal peoples access to country in a similar way. Ceremony is often connected to geographical locations and this ceremony is vital to the passing down of knowledge to future generations. It is a moral question for all Australians how we value the beliefs and customs of First Australians.
Are they worth being inconvenienced for? Do we value this culture highly enough? Do we possess enough courage to make a stand in solidarity with Aboriginal people, valuing their connection with land and their right to live in ways consistent with their beliefs?
John Adams is program development manager at Jesuit Social Services, Alice Springs.
Renal Unit image by Shutterstock.
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09 October 2013
Thanks, John Adams. State and federal governments' lack of care and funding for our two most vulnerable and neglected groups of people cannot be too greatly highlighted.
Australia's first people continue, in this "advanced" country, to suffer and die from renal disease and suffer and go blind from untreated trachoma. Our severely mentally ill, the majority, of whom, some 60%, are untreated, (MHCA, 2009), continue to die from natural diseases, mostly cardiac congestion caused by previous antipsychotic medications and an increasing rate of deaths by suicide.
Both these groups of people manifest their lack of care very simply; their life expectancy is some 30 years less than yours or mine. Irregularly treated "renal refugees" may live 56-60 years; untreated acute mentally ill have a life expectancy recently reduced to 54-55 years.
We can only hope and pray the new Federal Government may allot necessary funding and care to our most vulnerable and most neglected.
But the Prime Minister was Minister for Health as the care and funding for both these groups worsened.
09 October 2013
Refugees, John, have no choice. Their lives are threatened by circumstances over which they have no control. In Australia all people with renal failure have free access to dialysis treatment. Some choose to accept that and some don't. Society has no obligation to force medical treatment on any person particularly if that person refuses to accept it., regardless of the reason for that refusal.Our Aboriginal population is not alone in this country as a group with cultural/ethnic/religious impediments to accepting dialsis and kidney transplant treatment. These services are available, however , to all. It is far easier, more efficient and cheaper to bring Mohammed to the mountain than the mountain to Mohammad. ......
09 October 2013
A complex story well told John
10 October 2013
Another medical failure is what happens to diabetic patients who have had surgery and are clinically able to go home and receive outpatient treatment.They can go back to unhygienic, overcrowded living conditions, but that is only to put them at further risk. I have witnessed this at first hand with a family member. People talk about hostels in town - but try getting into one for more than a few nights! Our relative had to stay in a house where after repeated requests over many months, the broken hot water service was not fixed. This was in Tennant Creek township, not hundreds of kilometres out in the bush. Then a Centrelink staff person decided he could work, standing up all day, and refused to take the Specialist's written reports into consideration. Result - further amputation. And people wonder at the high rate of depression and suicide - including suicide by alcohol. Just go to Alice Springs Hospital and surrounds and count the number of missing limbs you see...Not proud of my country.
10 October 2013
Does anyone know the cost of a dialysis unit that could be set up in a nurse staffed clinic at a remote community? Presumably there would be some extra running costs (as Coles charge for the vegies they deliver, but that is another story). I would be most interested to hear the breakdowns of this. Perhaps other people would too.
10 October 2013
John Frawley, I know it is hard to grasp the implications of the interdependent system of Aboriginal life, particularly if you have had limited exposure. I do feel sorry that you don't understand that to be 'off country' is life threatening in itself, and the point of the article is about the breakdown of the communities where the elders are missing. I appreciate your understanding of the refugee situation but it is entirely different, and so is not a viable comparison. I do respect that you are thinking and trying to understand, bbut in this case it is necessary to go beyond dollars and cents, to see the cost of annihilation in one's own country.
10 October 2013
John, you don`t mention WHY aboriginal people in Australia suffer so much from renal failure. Although this is complex and multifactorial, the overwhelming cause is obesity and the consequent metabolic syndrome/type 2 diabetes. This is not to stigmatise or judge people, but it also does no one a favour to miss the main game, and a chance of doing something fundamental about a huge issue. Your picture would suggest a certain BMI challenge, John! When will maintaining a reasonably normal body weight become a moral issue, including for the Jesuit social services? Who otherwise will give leadership on this? There seems little point in continuing to invest so much investing in ambulances at the bottom of the cliff!
10 October 2013
Thanks Pauline for your interest and thoughtful comments. I do know how much it costs to run nurse assisted dialysis out bush. We will have been doing it for 10 years next year. Yes, although it may seem more expensive...smaller patient numbers per nurse than the hospital system, freight and travel, there are big cost savings when people are able to stay at home and be supported by their families. They also contribute to their communities through cultural knowledge, artistic pursuits and employment. Dr Alan Cass did a report for Kidney Health Australia (available on their website) that looked at the economic impact of End Stage Renal Failure in Australia. People dislocating from their communities doubled (plus) the whole of government costs of dialysis; housing, social workers, income support, increased hospitalisation. John is right when he says that communities fear for their very future due to this terrible imposition. The causes of kidney disease? Blaming lifestyle issues is common, but far too simple Eugene. It assumes agency over lives and a common understanding of disease causation. Traditionally the kidney holds the spirit. Sick kidneys/sick spirit. This is a disease of rapid culture change, dispossession, powerlessness and poverty. The ripple effects of displaced people, grief and loss add to this. I have been privileged to assist well over one hundred dialysis patients and their families return home to their country since 2004. I have seen the positive effects of this return on their own health and that of the whole community. I have seen dialysis demystified and people engaging with a system that previously was foreign and frightening. And I have seen great pride from communities who have worked so hard, with their own resources to establish services so they can 'hold on close' to their loved ones. PRICELESS! Tomorrow we will do our first dialysis treatment in Warburton, WA. 1000 kms from Kalgoorlie. People are back home who haven't seen their grandkids and their sacred sites in years. This is no 'ambulance at the bottom of the cliff', it is community development, initiative and determination at it's finest!
11 October 2013
Dear Pauline. I do have respect for what you say. BUT: are you educating people too in the CAUSE of this epidemic? With respect again, I think this is definitely an ambulance at bottom of cliff approach, even if the ambulances are painted in culturally appropriate aboriginal colours. I appreciate that cultural and "health" perspectives will take time to be transformed, but this just must occur...not just because of the huge cost, but because of the enormous amount of suffering involved.
15 October 2013
I too would like to know how much it costs your organisation to set up a renal/ dialysis unit in a remote community like Kiwirrkurra. Not as a judgment againts such expenditure but to get an ideaof what level of financuial support you might be in need of. I visited there for the ordination of a Local indigenous Lutheran pastor in May 2008 and would like to raise support for that proud and well kept community.
17 October 2013
We are piecing together the bits for Kiwirrkurra dialysis, but would love some help! I'm not sure of the protocols for providing contact details on this website, but we are WDNWPT or Western Desert Dialysis and have a website with contact details. Would love to hear from you.