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Western Desert dialysis comes to Canberra

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Western Desert dialysis comes to Canberra

9 Apr 2015

by Judith Hickson

A kidney dialysis machine and a chair used by patients at a ground-breaking Central Desert medical centre in Kintore (Walungurru) have arrived at the National Museum of Australia. This vital medical equipment allowed members of the Pintupi community to receive treatment for kidney disease at home, rather than leaving their family and country for larger regional centres. It is now part of the Museum's collection.

Desert country with red hills in the background.
Breathtaking desert country near Kintore shows abundant new life after recent rains. Kintore is about 530 kilometres west of Alice Springs, near the Northern Territory's border with Western Australia and South Australia. Photo: Judith Hickson.

On country community care

The equipment acquired by the Museum was used by numerous patients at the Purple House in Kintore during its first 10 years of operation. This 'on country' community dialysis centre started in 2004 and was the first of its kind in Australia, helping people stay home rather than travelling hundreds of kilometres for treatment in Alice Springs, Darwin or Perth.

Purple House was funded largely by the community, with money first raised through the sale of Papunya Tula artworks.

A dialysis machine and patient dialysis chair.
A dialysis machine and patient chair used at the Purple House in Kintore. Photo: Judith Hickson.

National Historical Collection

The kidney dialysis machine and chair are now part of the Museum's National Historical Collection. The collection also includes a reverse osmosis machine used for water purification, and the original 'Purple House Renal' handpainted sign.

A proposal to acquire the dialysis machine was first put forward in 2011 by Peter Thorley, head curator of the Museum's Aboriginal and Torres Strait Islander program. In 2014, senior curator Andy Greenslade and I flew to Alice Springs to meet with the manager and staff of the Purple House at their Alice Springs headquarters.

Their recent arrival in Canberra is the culmination of several years of negotiation and collaboration between the Museum, Kintore's local Pintupi community, Fresenius Medical Care Australia and the Western Desert Nganampa Walytja Palyantjaku Tjutaku Corporation (WDNWPT), commonly known as the 'Purple House'.

Read more about our visit to the Purple House in Alice Springs

Purple House, Kintore

Following our meeting in Alice Springs, Andy and I travelled 500 kilometres by road to the remote community of Kintore, along with staff and friends from the Purple House. Located in the hauntingly beautiful Western Desert, Kintore is home to about 350 Pintupi people. That weekend in September 2014, Kintore was busy with families and visitors who, like us, were there to help celebrate the 10th anniversary of the establishment of Kintore's Purple House, the first 'on country' community dialysis centre in Australia.

Desert country with two red hills in the background.
Kintore is near 'Purli Kutjarra' (two hills), a site of great cultural importance to Pintupi people. The township was founded in 1981 when Pintupi people who had been living at Papunya moved back to their own country. Photo: Judith Hickson.

Yari Yari Zimran Tjampitjinpa Dialysis Centre

At the Kintore anniversary celebrations, the original handpainted 'Purple House Renal' sign was replaced by a new, professionally painted sign, 'Yari Yari Zimran Tjampitjinpa Dialysis Centre', in honour of Kumantjayi (Yari Yari) Zimran Tjampitjinpa, a Pintupi elder and community leader, who first envisaged the centre at Kintore.

Members of the Zimran family standing in front of  the new 'Yari Yari Zimran Tjampitjinpa Dialysis Centre' sign.
Members of the Zimran family stand proudly in front of the new 'Yari Yari Zimran Tjampitjinpa Dialysis Centre' sign dedicated to the memory of the man whose vision and hard work laid the foundation for the centre's development. Photo: Judith Hickson.
An image of Sarah Brown with Marlene Nampitjinpa Spencer plus an image of Elizabeth Marks Nakamarra cutting a slice from a large cake.
Welcoming people to the anniversary celebrations were Purple House chief executive officer Sarah Brown (left) and Marlene Nampitjinpa Spencer, Purple House chairwoman and a senior health worker at the Pintupi Homelands Health Service. Highly-regarded Pintupi artist Elizabeth Marks Nakamarra (far right) cuts the first slice of the anniversary cake which she decorated for the occasion in her well-known painting style. Photos: Judith Hickson.
Morris Gibson Tjapaltjarri with renal nurse Mary Jeanes.
Renowned artist and ardent Hawthorn supporter Morris Gibson Tjapaltjarri and renal nurse Mary Jeanes join the celebrations. Photo: Judith Hickson.
Andrew Spencer Tjapaltjarri and curator Andy Greenslade.
Respected Warlpiri elder Andrew Spencer Tjapaltjarri and curator Andy Greenslade share the welcome shade of a tree to listen and watch the festivities. Photo: Judith Hickson.

Purple House story

In 2000, the Art Gallery of New South Wales hosted an unusual and remarkable auction, compered for Sotheby's by 'Rampaging Roy' Slaven and HG Nelson. More than $1 million was raised from sales to national and international buyers, including a painting sold to Australian businessman and philanthropist, Kerry Stokes, for $340,000. In 2004, after much lobbying and further fundraising, the Purple House dialysis centre opened in Kintore.

The original idea for the auction and its subsequent success was due to the tireless efforts of the 'Friends of the Western Desert Dialysis Group' and Papunya Tula Artists. This extraordinary effort by Pintupi and Luritja people represented a critical milestone on the path towards providing dialysis treatment for their family members at home.

Sign reading '
The original Purple House Renal sign at Kintore, replaced at the 10th anniversary, is now part of the Museum's collection. Photo: Judith Hickson.

Avoiding living 'like a dog on the fringes'

The opening of the Purple House in Kintore in 2004 was a celebration of this momentous accomplishment. It was also marked by great sadness for the absence of Kumantjayi (Yari Yari) Zimran Tjampitjinpa whose inspiration and efforts laid the foundation for the development of the centre. Mr Zimran developed chronic kidney disease, resulting in end-stage renal disease, in the late 1990s.

Forced to leave Kintore to access treatment in Alice Springs, Mr Zimran found himself living, in his words, 'like a dog on the fringes'. Existing as a homeless person, feeling chronically unwell and having little control over his life was a shaming experience for Mr Zimran and a radical change from his experience as an important and respected person in his own country.

Family and kin relationships are fundamental to the social and community life, and to the sense of health and wellbeing, of people from Aboriginal communities. For Mr Zimran, the loss of family (walytja), country (ngurra) and dreaming (tjukurrpa) compounded his sense of shame and homesickness. Anthropologist Fred Myers explains watjilpa, translated as 'homesickness', 'pining' or 'lonely', as a feeling by Pintupi people of separation from familiar people 'with whom one grew up' and places 'where one feels safe and comfortable.'

A large purple truck with Indigenous artwork on its side.
The Purple Truck mobile dialysis unit ready to hit the road, adorned with paintings by significant Papunya Tula artists Maurice Gibson Tjapaltjarri, Nyingura Naparrula, Patrick Tjungurrayi and Ningura Naparula. Photo: Judith Hickson.
A man and a woman kneeling on the ground next to the wheel at the front of a purple truck.
Changing a truck tyre wasn't part of their job description, but was all in a day's work for remote area dialysis nurses Ronnie Edmonds and Clint Adams. Photo: Judith Hickson.

Improving treatment for people with chronic disease

Mr Zimran's experience mirrored those of many other Indigenous people who have had to relocate to receive treatment for chronic disease. Unemployment, accommodation difficulties, debt and welfare dependency leading to family disintegration, depression, diminished survival and loss of personal and social control, are common stories among remote Aboriginal patients receiving dialysis in large centres.

Mr Zimran used his experience to work for the betterment of his people. Through his vision and effort the Western Desert Dialysis Appeal (WDDA), forerunner of the WDNWPT, held its inaugural meeting of the 'Kidney Committee' on 6-8 November 2001 at Hamilton Downs, an outstation 75 kilometres west of Alice Springs.

Fulfilling Mr Zimran's dream, dialysis in Kintore has been a reality for the past 10 years. Following the success of Kintore, clinics have been established in Yuendumu, Kiwirrkurra, Ntaria, Warburton and Lajamanu. A state of the art mobile renal dialysis unit, the Purple Truck, provides mobile service to remote centres where clinics have not yet been established. The Pintupi continue working to help themselves and have also inspired many other communities to do the same.

Fresenius Medical Care

The dialysis and reverse osmosis machines now in the Museum's collection were donated by Fresenius Medical Care Australia. Sarah Brown from Purple House said the continued operation of the dialysis centres would not have been possible without the support of the German-based company. 

Fresenius supplies the dialysis and reverse osmosis equipment for the Purple House in Alice Springs and the eight remote communities which now have their own dialysis centres. The company continues to provide support to maintain the equipment and ensure the delivery of safe, good quality dialysis 'out bush'.

Lindsay Corby and Noel Edmonds (seated) with Andy Greenslade and Sarah Brown (standing).
Chatting before visitors arrive for the anniversary celebrations are (from left) Pintupi elder Lindsay Corby, Noel Edmonds, curator Andy Greenslade and Purple House chief executive officer Sarah Brown. Photo: Judith Hickson.

More

Western Desert/Purple House website

Western Desert art on our Warakurna website

Papunya Paintings exhibition

References

P Rivalland, 'Development of a remote, community-based dialysis service in Central Australia: Western Desert Nganampa Walytja Palyantjaku Tjutaku', 2004.

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