I arrived at Kiwirrkurra after two days on the road including a five-hour dialysis session for Patrick and a Papunya Tula AGM in Kintore.
Patrick's excitement when I picked him up from the hostel in Alice was palpable. We had the usual drama about the key card with no number and a bit of tension about me not buying him orange juice. I only learnt 20 minutes before that orange juice and bananas are a 'no go' for dialysis patients. I also found out that more than 500ml of fluid a day is a health risk. That's pretty tough when it is 40 degrees in the shade!
Dialysis patients don't piss, so they are the perfect companion for a long road trip.
Patrick Tjungarryi is a senior Pintupi man who grew up in Balgo Hills. He is a Papunya Tula shareholder and one of Australia's most collectable artists. His paintings feature prominently in the Canning Stock Route exhibition currently touring Australia.
In 2008 the Northern Territory government refused to allow Patrick to come to Alice Springs for dialysis. They told him he would have to move to Perth. Advocacy from a number of NGOs lead by Western Desert Nganampa Palyantjaku Tjutaku Aboriginal Corporation (WDNWPT) reversed this decision and caused Minister Snowdon to commission a report into renal health in Central Australia. (WDNWPT delivers nurse assisted dialysis in Kintore, Lajamanu and Yuendumu, and supports Western Desert Dialysis patients in Alice Springs through the Purple House.)
Patrick learned to do peritoneal dialysis and returned home to Kiwirrkurra, and cared for himself for two years. An infection meant he could no longer do this and he was forced to leave Kiwirrkurra to access dialysis treatment in Alice Springs. Alice Springs is Arrente country. Pintupi forced to leave their communities and live on another person's land experience significant homesickness and a sense of shame.
The six hours to Kintore were uneventful. I've done the trip a couple of times before but it's been a few years. We passed through Papunya and Mt Liebig on the way. By the time we got to Mt Liebig the store was shut so Patrick and I made do with crackers and cheese. I asked him if he wanted some of my apples but he told me in mumbles and sign that his teeth aren't up to it. Communication is a bit of an issue but we make do.
When driving, Patrick tells me where the road is bad and where the water holes and outstations are along the way. If I miss one of his subtle finger movements and we hit a hole in the road too hard he grumbles.
He can get cranky but it's mostly down to frustration and when he's happy with me he calls me Jakamarra and gives me a cheeky grin. But there's not a lot of that. We share a similar personality, getting irritated with each other occasionally, but this has its own integrity. It's hard to hide from each other on trips like this.
*****
On day one in Kiwirrkurra I caught up with Patrick and his family. His son tells Patrick I am a Catholic, and that impresses everybody a great deal. I gave Patrick one of my Jesuit cards when I was in Alice Springs and he gave it to his son. Apparently there had been a discussion the night before about who was this 'husband of Sarah' who brought the old man home.
I went to the clinic to meet the nurse, a convivial, older chap by the name of Paul. He made time for me even though he was busy.
I then caught up with the community development advisor. She talked about the community's desire to build a recreational hall. They have $600,000 to go towards it. I talked about my own experience in building such things and how they probably were a bit short on cash to build what they wanted. I said I would help out if I could.
In the afternoon I caught up with Bobby West, the community leader who invited us to Kiwirrkurra. He showed me his country and let me know my obligations regarding its use.
On our return to the community I met with Jimmy Brown, the chairperson for the community and the Lutheran pastor. We talked about bringing the Catholic priest from Alice out to perform a Mass for the Catholics at Kiwirrkurra. (Whether at Kiwirrkurra or Ali Curung I always get told 'We [are] all Christians, don't matter'. Too bad they never met my grandmother, it really mattered to her!)
Although I make a point of spending most of my time being with community members, a lot of time on these trips gets spent with the non-indigenous staff. They all seem to struggle with the culture and Aboriginal ways of doing things. We are supportive and listen, being careful not to buy into their issues .
Frustration is the overriding emotion. Quite often they bring up the same issues or ideas I heard 20 years ago when I was one of them. The way forward hasn't changed in my mind: one needs to be grounded in the community, there are no simple answers and people are entitled to experience the world in their own way. Non-indigenous people think they can fix things, they don't see that this view reeks of cultural superiority.
Service providers who work in such communities need to be mindful that they engage with the whole community, are transparent, and are useful in practical ways. This requires patience, a full experience of the life of the community, and a willingness to listen. Urgency is the enemy.
*****
The trip home is long. Patrick looks like he has a weight lifted from his shoulders. His wife has failing kidneys and has dementia. Each time he goes home it could be the last time he has with her.
A weight has been lifted off my shoulders too, by the way the community welcomed my involvement in their lives. I feel Patrick and I have the start of a relationship. We know each other a little better — 16 hours in a Hilux will do that to two grumpy old buggers. And I know that Kiwirrkurra mob a little better now too. It's a start.
John Adams is program development manager at Jesuit Social Services, Alice Springs.