Western Desert Dialysis Appeal

Introduction

‘Your place or mine’ — dialysis in Central Australia

WDDA - Kidney Committee

The Region

Most of the 1200 Aboriginal people living in the remote, arid area west of Alice Springs live on parts of theirtraditional country in extended family outstations or on larger communities of a few hundred like Kiwirrkurra,700 km west of Alice, across the WA border.

Pintupi, Luritja, Pitjantjatjara, Ngaanyatjarra and some Walpiri,Western Arrente and English are spoken in this area.

The people within this region refer to themselves as Yanangu.

The WDDA Kidney Committee has about fifteen Yanangumembers who recognise their responsibilities toorganisational membership through their cultural obligationsof kinship, traditional country and ‘tjukurrpa’ (sometimesreferred to as ‘dreaming’).

This story is about the people of the Western Desert of Central Australia - Yanangu. It is about art,money, the devastation of kidney disease in our remote communities and in particular about one man’svision for a future.

Kumantjayi Zimran Tjampitjinpa was a remarkable Pintupi man who passed away in December 2000,having been a patient in the Alice Springs renal unit for almost 4 years. His vision and efforts laid thefoundation for the Western Desert Dialysis Appeal to work to bring back people on dialysis to their owncommunities on treatment.

The Western Desert Dialysis Appeal (WDDA) is a non-government organisation entirely funded from the saleat auction of indigenous artworks from communities in the Western Desert.

Community Life Disrupted

Artworks auctioned to raise funds for the project

The Kiwirrkurra Men’s Painting

Astonishing Fundraising

Community Power

“The law is like a human being, it workswith Aboriginal people—Anangu.Anangu and the law is together, if that law isweakened, people get weakened and they feelthey are weak because they have taken awaythe power in the community.That is the whole issue about communitycontrol under Aboriginal law”.

Kumantjayi Zimran, 1997

Yanangu do not see their paintings as inanimateobjects but as representations of life at variousdepths. The painting shown here is known as theKiwirrkurra Men’s Painting, one of the four specially-commissioned works. This painting shows Yananguobligations of ngurra (traditional country), walytja(kinship) and tjukurrpa (dreaming).

In the late 1990’s, many Western Desert peopletalked about the alarming number of their peopleneeding kidney dialysis and the way treatment wasbeing delivered. They talked about the disruptionand loss to family and community life whenpatients and their families have to shift to the AliceSprings dialysis unit. Once in this regional unit,they live, and then inevitably die, so far away -haemodialysing “on the machine”.

Senior men and women at the peak of theircommunity influence, become chronically unwelland shift with their families for dialysis to AliceSprings - someone else’s country. They are thenasked to guarantee regular attendance at a clinicalinstitution, almost another world, where theysense minimal respect and have very little controlof their lives.

This was the experience and reality of Mr. Zimran,the man who brought this Western Desert DialysisAppeal to a reality and whose legacy we are tryingto fulfil.

In early 2000, an informal alliance of Aboriginalcommunity representatives, local ALP politicians,art collectors and dealers planned an auction ofdonated artwork and four specially-commissionedpaintings by men and women from Kiwirrkurra (WA)and Walungurru (Kintore) in the NT.

By the end of the year over $1M had been raised,an astonishing sum, principally through aSotheby’s auction in Sydney. This money nowfinances the Western Desert Dialysis Appealproject, which aims to bring back individuals andtheir families from Alice Springs to dialyse on theirhome communities.

Neither the NT nor Federal governments has offeredto match this money on a dollar for dollar or anyother basis.

These three elements are all interrelated andthrough many complex processes of learning andunderstanding, form the basis of being Yanangu, aprocess commonly referred to as ‘The Law’. This isthe way that Mr. Zimran understood who he wasand defined himself.One artist explained that the stories accompanyingthe paintings when sold were only the surface.They are like an iceberg which displays only onetenth of its bulk above the sea level. Given thedifficulty that many have in comprehending eventhe surface of a Yanangu world, it is not surprisingthat policies and programs directed at Yanangu failto achieve their stated aims.

Kiwirrkurra Men’s Painting: B. West Tjupurrula, B. Tjungurrayi,C. Wallabi Tjungurrayi, C. Ward Tjakamarra, J. Yungut Tjupurrula,K. Tjapangati, P. Tjungurrayi, T. Tjapanangka, W. Tjapangati.Painted November 1999. The painting shows designs associated withthe soakage water site of Tjangimanta, just to the north-west ofKiwirrkurra community.

Tingari Cycle

Kidney Services inCentral Australia

Renal Unit

Most regional kidney-related services are providedfrom Alice Springs. The town has 27,000 people, ofwhom 20% are Aboriginal and it lies exclusively inArrente country. Anangu from the Pitjantjatjaralands in South Australia also look to the Alice formost services, as do those from the easternNgaanyatjarra lands in Western Australia.Currently (2002) there are about 80 people onhaemodialysis in the Alice Springs renal unit whichhas enough space for 102.

Aboriginal people in the surrounding remotecommunities suffer end-stage renal disease about30 times the national average. Individuals usuallyhave type II sugar diabetes, high blood pressureand heart disease as well.

While Aboriginal people are only a quarter of theNT population, they make up about 90% of thepeople on dialysis. Most of these are women, whobegin dialysis ten years earlier than others inAustralia but enter the hospital system later,usually as a critically-ill patient. Though mostpeople come from remote areas, only about 10%ever return home on dialysis compared to 38% ofpeople nationally.

The photo of the Alice Springs kidney dialysis unitmakes a sad contrast. This is the space wherepatients from remote areas become entrapped.It is an indicator of the depth of this tragedy ofillness and dislocation, that so many choose not toleave their family and country, never being offeredthe mainstream choices that are available to non-Aboriginal Australian citizens.Mr. Zimran could not have his last wish granted, todie in his own community, because the appropriateservices were non-existent.

It is also not surprising that the call for Aboriginalself-government in Central Australia is being led bythe remote regions. Mr. Zimran tried to make thoseworking closely with him understand thesignificance of Yanangu Law and take the messageto other Australians. He was involved in manyprojects directed at the betterment of his peopleand developing an understanding between us all.

In 1998 Mr. Zimran became the chairperson andguiding hand for the Combined Aboriginal Nationsof Central Australia (CANCA), a body committed tothe recognition of Aboriginal law and self-government in Central Australia.

The vision he continually expressed was that ofhaving those elements which define Yanangu beingwithin their own control.

This family bush photo is of Karrkurrintinytja, asite south of Kintore in Mr. Zimran’s country. Thissite is important in the cycle of the Tingari menwhose travels are also indicated in theKiwirrkurra painting.

This photo shows the elements that made Mr.Zimran and with which he strived to be united, notonly for himself but for those who were also part ofhim. It shows his family (walytja), visiting country(ngurra) and viewing the dreaming (tjukurrpa) ofthis place.

Songs were sung whilst travelling to reinforceattachment and children were instructed about thesite. This is a happy photo which incorporates allthe elements of being Yanangu which Mr Zimranmissed so badly in Alice Springs.

For further discussions, questions, making tax-deductible donations and asking about newsletters, contact:

kidney @ octa4.net.auor WDDA, PO Box 562, Howard Springs, NT 0835; ph (08) 8983 3367

Kintore Women’s Painting:J. Napurrula, K. Nampitjinpa, N. Nungurrayi, N. Nungurrayi, N.Napurrula,P. Napanangka, T. Napurrula, T. Napaltjarri, W. Napaltjarri, Y. Nampitjinpa,Painted November 1999. It shows designs associated with the rock holeand soakage water sites of Marrapinti, Umari and Tjintjintjin.

A World-Wide Story

Project Strategies

Strategies

Our central strategy rests on Mr. Zimran’sphilosophy that underlying control must rest inthe hands of the people affected. To this end theKidney Committee - both as informed individualsand a regional body - binds workers, members,communities and patients. There is a partnershipformed when sitting down to understand themany issues surrounding dialysis from themainstream perspectives of community, patientand provider. Problems, reflection and actionrequire sharing between all stakeholders - bothout bush and in town.

The strategies we are pursuing are:• a parallel process of communicating the

project issues and development betweenbush and town, family and home community

• the development of appropriate resources,including Yanangu themselves,to inform patients and families abouttreatment options

• a program which pays for six return flightsper year per patient to their homecommunity

• improving the living experiences of thosecurrently on dialysis

• working with local and regional services toidentify appropriate treatment options,including self-care dialysis on remote communities

• working with people about to enter dialysis

• incorporation

This small group all use peritoneal dialysis (PD, or“the bag”). No-one from the project region has everreturned home to live on dialysis.

At the start of the project in April 2001, fourteenpeople from the Western Desert were onhaemodialysis in Alice Springs, including membersof three generations of one family. One year later,six of those fourteen people have passed away.

Most of those on dialysis in Alice Springs surviveless that five years, compared to eight nationally. Inthe mid-1990’s, people from the project regionsurvived about 2 years! Discussions in one largeprimary health care service suggested that up to25% chose palliation rather than dialysis away fromtheir country.

Many Yanangu over 40 were born in the bush, andcame with their families to government settlementsbetween the 1960’s to the 1980’s (both voluntarilyand involuntarily). They share with all otherAboriginal and Torres Strait Islander people theexposure to the spasms of change that have beendirected by non-indigenous powers.

There is virtually no private economic activity apartfrom fine-art. Mineral royalties and welfarepayments provide most of their income, placingthem in the lowest 10% income nationally.Unemployment rates are above 90% (disguised bywork-for-the dole schemes) and living costs arehigh - fuel is $1.35/L, a small tin of Milo $5 andbread more than $3.

This picture of disease accompanying rapid lifestylechange, poverty and disadvantage is shared byindigenous populations world-wide.

This story is based on a presentation in May 2002 to WONCA (5th World Conference on Rural Health), Alice Springs, by Jeff Hulcombe and Paul Rivalland on behalf of the WDDA.Thanks to Rosie Elliott (edit) and Jo Boniface (graphic design).