Annie was looking at me quizzically. ‘Right. We’re all on the same page.’
‘Yes. We’re all on the same page,’ I repeated dully.
When it seemed as though I was finished, Annie rose and picked up her bag to leave.
I looked up suddenly. ‘So we don’t actually know anything about how to eliminate scabies?’
She frowned. ‘Well . . . that’s why we need experts. That’s why we’re doing the baseline screening and this pilot study.’
‘But I’m pretty sure that a mass drug administration on its own will have little or no lasting effect because it’s not a vaccination; one visitor with scabies will send us back to square one. And we also know that a short-term social change program won’t do anything: just telling a mother that scabies is not normal and that she has to clean better because the living conditions are making her kids sick is only going to make her feel shame, but won’t actually change behaviours if there’s nothing she can do differently—if she doesn’t have affordable soap and household cleaning items, toilet paper and a functioning washing machine, for example. So basically we’re trying to pull together two dysfunctional ideas and just hope that they work?’
Annie tensed up. I held her gaze for a moment, then her mobile rang and she scrambled to pull it out of her bag. She looked up before answering the phone but I waved her goodnight.
When I called Tanya that night, I tried to sound upbeat. I warned her that she might feel culture shock when she finally moved up. That’s what I was experiencing, I said.
‘Did you get my operations plan?’ she asked.
‘Yeah. Yeah, it was good. Thanks for doing that.’
‘What’s wrong, Bud?’
‘Oh . . . it’s just been a tough day.’
She waited and the silence drew out.
‘Tan . . . Everyone gave their support to the MDA because the Northern School promoted an environmental component but really the Northern School’s focus seems to be on ivermectin. It just won’t work. And to run an effective environmental program is a decades-long development project, not one that we can finish in the two-year timetable that Sam has been asked to raise money for.
‘And you can’t turn up, get everyone to open their doors, ignore everything else you found in the screening program, line them all up and stuff a medicine down everyone’s throats and while you’re at it give everyone a new washing machine that will break down in six months, new beds that won’t fit in the house and a lecture on how to clean better. Then move on to the next community.
‘The test is this: if you put us in the same scenario—living with twenty other people and visitors staying indefinitely and the plumbing doesn’t work—if we’re in the same situation as they are in two months’ time, then telling people to change just won’t work.’
Tanya didn’t speak; I was not really talking to her anymore. She had opened a new page on her laptop and began typing my words as I spoke.
‘I can see how it can be done. We don’t have support for an MSF-style MDA and treatment alone simply won’t be successful. The environmental campaign requires generational change but the Northern School is a research organisation that has to survive on turning around two- to four-year grants. And our board and donors have been told to expect results in two years.
‘If you want to change chronic, entrenched health problems, you can’t do it in two years and in ten places simultaneously. You have to become knowledgeable about each specific context, develop relationships, become trusted. Then after a few years you can start working on change. And One Disease can connect all the people who are working like crazy right now, on the ground, and haven’t had the time to even write a grant proposal.
‘If they want to do this program across ten communities at the same time then I have to find the people who are ready to live in the communities for ten years. But my position shouldn’t be with the Northern School, it should be with the Department of Health or One Disease. Research funding does not support and reward the timeframes needed for long-term change.
‘I have been beating myself up but Sam never told me to get on with dosing everyone in east Arnhem. He asked me to help him make sure his funds did some good. I can’t let him down. You know I went into someone’s house today because the mother didn’t come outside and the child asked me in and the mother was lying in her bed, under a doona. In this heat. She wouldn’t get up. Couldn’t. Depression or who knows what. How is telling her to clean up better going to help?
‘We committed to doing the right thing by the kids but I don’t think the right thing by the kids is just giving them pills.’
When my words had finally dried up, Tanya labelled the document ‘Scabies Confusion’, dated it 8 April 2011 and emailed it to me. She didn’t have the heart to tell me that the roll-out of the scabies program MDA had been announced in the national press that day.
‘Buddhi, I want to ask you to do something. Put aside the project for now and just spend time with some old women from the community. Just sit under a tree in the shade. See what happens. Will you do that?’
I said I would do it, but my mind was elsewhere.
I left my container and stepped out into the warm, humid evening. The unmistakable rhythm of Zorba the Greek wafted down on the salty air and a crowd had gathered in Bottom Camp, the southern-most area of the tiny town. Hundreds of people crammed around the centre basketball court in a dusty clearing where a lone floodlight illuminated a group of boys dressed in colourful loincloths, their bodies smeared with white clay. The crowd laughed and applauded as the boys broke into a modern hybrid dance, distinctively Yolngu and utterly compelling. Some of the boys sported cheeky grins, some of them were deadly serious. The dust clouded around their feet. I had no idea if this was an important show, a well-rehearsed send-up, an impromptu bit of fun or something designed purely to bamboozle someone like me.
The man standing beside me nodded his head at the boys.
‘Chooky Dancers.’
‘Sorry?’
‘Chooky Dancers.’ He pointed. ‘They’re famous!’
Later that night I googled the Chooky Dancers and learned that they had already made their mark around the world and had, without choreographers or formal dance training, created a performance that became a YouTube hit. The potent ingenuity of restless teens with music and an audience was universal.
When I woke the next morning, now nearing the end of my week and a half in Galiwin’ku, I felt drained and disconnected. I dressed and shaved and stepped outside into the heat and turned away from the office next door. I just couldn’t face it today.
Two old Yolngu women who worked on the MDA trial saw me wandering aimlessly and took me to the art centre. They showed me around, describing the art and totems.
Later, over lunch, I met an electrician from Darwin who had been travelling out to Elcho Island to work for over twenty years. In the seventies, he said, there had been a thriving farmers’ market. In Yirrkala there was animal husbandry as well, and now everything came on a barge. All the do-gooders have decimated these people’s will, the electrician said. And wealth had been the most lethal weapon of all.
That afternoon I asked Annie if she went hunting with the old women.
‘They’re always asking me to go but it takes all day and I have so much to do when I come here. Are you interested?’ When I nodded, Annie organised for me to go with the community workers and some visiting pharmacy students who had been helping with the work of dispensing ivermectin on the MDA. We would go the following day, a Saturday.
The next morning the pharmacy students and I arrived at Yapunya’s house a few minutes late. I began apologising for our lateness to Jilory, Manyipi and Yapunya, who worked for NSMR and had years of experience in community health and as Aboriginal health workers. They looked at me blankly and my excuses seemed to stick to my lips. There was nowhere to sit on the verandah so I stood awkwardly.
For a long time nothing seemed to happen. Manyipi and Yapunya sat on the c
ement floor and had a cup of tea while Jilory disappeared inside the house. Nobody paid any attention to the pharmacy students or me. Eventually old women and young grandchildren began to drift towards the ocean. Each person moved according to their own timetable. We joined them, taking a billy, a packet of flour and some maple syrup. When we were settled in a shady spot, the students and I asked the women what we were there to do.
‘We’ll get some mussels today. Got to wait ’til low tide.’
‘When is low tide?’ one of the students asked.
The women looked at her and one of them began to laugh. ‘At low tide!’ she said, and the other two began laughing with her. ‘Just have to wait and see!’
I grinned. Who better to ask about the tide than the ocean?
The students went for a walk on the beach while the women settled in for a chat. Some of the time they made tea in the billy, or mixed flour and water and threw a flattened ball of dough straight into the ashes to make crusty damper. Some of the time they talked seriously or howled with laughter and sometimes they just sat quietly, watching the ocean.
They told me stories about kinship and how all things in the Yolngu world were divided into two moieties, Dua and Yirritja. When I asked what the moieties were they said it was to do with family, and ancestors, and everything. Everything was either Dua or Yirritja and so all events and places were interconnected.
‘That place there is where our ancestors stepped off their canoes and onto land. These two sisters, our mothers, were the first to come to this area. You can see their footsteps in the rocks. And the water they spilt, that made the creeks.’ They spoke about the past as though it were interlaced with the present, about ancestors as though they were still alive.
After a couple of hours the students grew bored and returned to Galiwin’ku but it was the first time my mind had stopped whirling since I had spent three hours talking to Sam in my backyard, so I stayed.
Six hours after we arrived at the beach the tide was at its lowest and we took whatever containers we could find and filled them with mussels and tiny hermit crabs. We revived the fire and threw the mussels and crabs into the coals. Then, with safety pins, we extracted tiny bits of flesh from the shells and shared them. The fiddly work tested my patience more than the six-hour wait but once I accepted the pace I began to enjoy the tasty, salty delight that each shell offered.
I asked Jilory, an experienced Aboriginal health worker without the permanent scowl that some of the old health workers sported at work, what she thought of the scabies program.
‘We know what to do about scabies,’ she said bluntly. ‘Help us run a program to work with the mothers and families. We have been running healthy skin days here on our own. Help us make them better. Stand with us and work together.’
She made it sound so simple. Surely with our support in logistics and communication we could help strong women in communities run more effective healthy skin days. They already had a lot of goodwill, they were much easier to repeat than an MDA and we could piggyback other initiatives on them.
In the Northern Territory town of Wadeye a young doctor called Li Chuen Wong had shown that with the right local people and with support from health centres to help the elders in each house apply creams during the day, scabies could be reduced. We did not have to re-invent the wheel, just round off the bumps.
‘Do simple things well,’ Sam was fond of saying.
The lazy waves had started their twice-daily pilgrimage back up the beach. Jilory nudged me out of my reverie and asked if I would like her to adopt me so that I had a place in the Yolngu kinship system.
I smiled. ‘I’d love that.’
5
LEARNING ABOUT GATEKEEPERS
Early the next week I left Galiwin’ku and flew to the east Arnhem regional base of Nhulunbuy to meet the Miwatj and Northern Territory Health staff.
The town of Nhulunbuy was created to house staff for the nearby bauxite mine established in the late 1960s. The mine had been excised from Yolngu land by the government and was the catalyst for Australia’s first significant legal native title dispute, the 1971 Gove land rights case. The Yolngu lost that case but established the legal context for the Aboriginal Land Rights (Northern Territory) Act 1976. (In 1992 the historic Mabo decision overruled the Gove land rights case, rejected the principle of terra nullius and recognised native title.) I spent three days in Nhulunbuy talking to everybody I could.
A colleague of my sister mediated disputes and tracked missing funds in Aboriginal-controlled health services in remote communities and armed me with some advice before I left Canberra. ‘Start by listening,’ she said. ‘Try to figure out quickly who you can trust and who has clout, and stay well clear of inter-Aboriginal politics.’
On one job she had called the chairman of the health service to prepare for her visit and he had told her not to bother coming. ‘We are just heading over to spear the CEO and our problems will soon be solved,’ he had told her.
So I was prepared to listen. I was not prepared for what I heard.
First on my list was the enigmatic CEO of the Miwatj Health Aboriginal Corporation, Eddie Mulholland, who had led the organisation for many years.
The work of leading an Aboriginal community-controlled organisation was not for the faint-hearted. In the complex world of Aboriginal politics, Eddie, a consummate deal maker with canny instincts, had not only survived but had thrived. He had built, and kept united, a high-profile board made up of the heads of many east Arnhem clans and communities, and he had expanded Miwatj to a multi-million dollar organisation with increasing regional influence.
I made a quick decision to work closely with Eddie and gain his trust. I bet on his ability to make things happen and to put communities first. I asked Eddie for examples of the successful programs he had seen in his decades of work in the sector, and why they succeeded when so many didn’t.
Eddie immediately recalled the Tiwi Health Board’s team of Indigenous environmental health workers and trainers who ran healthy skin days and fixed broken health hardware. He reminded me that the fundamentals were too often forgotten: long timeframes to build capacity, allowing Aboriginal people to take the lead in program work, trusting in staff abilities and giving people a chance to succeed—and to fail.
‘Make sure people’s contributions are recognised,’ he said. ‘And have high expectations of Indigenous staff. Call out poor performance. It’s just another form of racism when you expect so little from Indigenous staff and reward the unreliable ones; it devalues those who try hard.’
Eddie asked a Gumatj and Wanamiri clan leader, Terry Yumbulul, to guide me and act as a liaison with communities. Terry was a nationally recognised artist and adventurer who had lived for years on his ancestral homeland at Wigram Island. Terry had run land councils and was currently working to establish Aboriginal control over marine resources in the northern seas of Australia. A seasoned political player, Terry agreed to take me under his wing and show me around.
Regina Merkel, the Medical Director of Miwatj Health, was next on my schedule. She was a no-nonsense operator who got things done and called a spade a spade. Regina had returned to Miwatj after having worked there as a young doctor some twenty years ago. She quickly picked up on my ambivalence about the mass drug administration (MDA).
‘Ivermectin is not registered for scabies, the trial results are not in and an MDA isn’t going to keep rates of scabies down for long, even if it works initially. So supporting the current model of healthy skin days and looking at ways to improve them seems like a better plan in the short term,’ she said.
I nodded, my mind already repeating her words. Regina would be one of my most important allies if I were to run a successful program in east Arnhem. She was happy to take risks with external stakeholders but not with the communities we were here to serve.
While on Galiwin’ku, Victoria Bracken, a dedicated parasitologist who worked for the Aboriginal Resource Development Service (ARDS), had helped me faci
litate meetings with senior community members so I could discuss the proposed scabies program. I later learned that ARDS had a close interest in the ivermectin MDA because of the action of ivermectin on another parasite—a worm called strongyloides.
Clinic doctors and ARDS volunteers in Galiwin’ku had showed initial interest in an ivermectin MDA because of the impact it would have on strongyloides in the population. The MDA research project had leveraged this interest to draw in grant partners but the primary focus was scabies.
There was an ongoing debate in the Northern Territory between ARDS and the Northern Territory Centre for Disease Control (CDC) about the importance of screening for and treating strongyloides. It was another issue that polarised people and inflamed passions. Doctors who had spent considerable time on the ground in communities felt that it was anything but benign.
Strongyloides is a parasitic worm that continuously reinfects the body so that individuals have it for life, unless they get treatment. The worm can burrow through internal organs, and if a patient’s immunity is suppressed, they can experience a deadly hyper-infection. Some doctors reasoned that anyone at risk of the condition has a right to know that they are at risk, be tested and, if infected, be treated, especially since treatment is inexpensive and relatively safe.
Others argued that strongyloides is a benign parasite ubiquitous in areas with overcrowding. Whole-of-population screening and treatment would occupy precious health centre resources and for little gain as people were likely to be reinfected in endemic areas. The scabies program designers, who were primarily interested in the chronic diseases associated with streptococcal skin infections, had told me not to be distracted from our focus on scabies.
A Doctor's Dream Page 4