‘But he is attending a conference tomorrow. This is just a misunderstanding!’ Oliver’s face grew hot.
‘Sir, if you don’t calm down I will not be able to check any of you on to the flight.’
Oliver opened his mouth, then turned away. There was no other way to leave Gove and arrive in Cairns in time for the conference tomorrow.
After some consultation Rukula’s husband agreed to take a taxi back home. The group was silent as he walked back out into the heat, a brand new shirt covering his slumped shoulders. He had been seriously ill for a very long time and was fully aware that he did not have long to live. He hadn’t cared if the trip to Cairns was his last; he had been determined to watch his wife’s big public speech.
Rukula was burning as she watched him leave. She considered joining her husband and returning to their community. Shaking slightly, Rukula turned and walked through the security checkpoint. She didn’t speak for the remainder of the day and went to bed early, alone.
The following morning I arrived in Cairns and met the team at breakfast. I immediately sensed something was wrong.
‘Rukula. How are you?’ I asked.
‘Not good, Wawa.’ She called me wawa, brother, and relayed the painful story.
I was furious. An airline clerk would never have turned away a balanda because they had misunderstood a question. I called Tanya, and handed the phone to Rukula. She sadly repeated the saga.
Tanya was sitting on our sunny verandah watching native ducks pecking at insects in the grass. She had never heard Rukula sound so defeated.
After breakfast I took Tyson and Jacob to visit their distant cousins while the others went to listen to presentations and participate in conference workshops.
Tyson spoke about the problem with petrol sniffing in their community, and what needed to be done about it. There was a small group of ringleaders, and he and Jacob thought together we could reach their impressionable friends with videos on smartphones and Facebook.
If anyone would know what might work, it would be the young men who watched how sniffing destroyed the lives of their friends. ‘You have to tell Sam and Jennifer!’ I enthused, and they agreed eagerly.
Tyson had lost his bankcard so he wanted to get a new one while in Cairns.
As Tyson approached the bank’s entrance I could see his anxiety rising. Once at the teller, Tyson handed over his identity card and requested a replacement bankcard. The teller couldn’t find his name and told Tyson he didn’t have an account with the bank. Tyson asked her to please check again. Then he asked her to try the names another way, knowing that family, skin and first names often got mixed up in the form-filling process.
The teller tried again and told Tyson flatly that he had no account with the bank. Having reached his limit of confrontation and realising he had hit a wall, Tyson left. Outside he asked me if I would try so we went back in together. His body language said please solve this and don’t prolong the discomfort.
The teller explained to me that Aboriginals often spelled their name incorrectly so it could be impossible to find their records.
It was clear she was finished with us so I asked to see the manager.
My secret weapon was a willingness to make a scene. When the manager arrived I said, ‘Tyson has an account with the only bank in Nhulunbuy, which is this one. He is simply asking to have access to his own account and money. Surely that is not too much.’
My voice was growing louder and the manager sat down and concentrated, entered the ID details and then lifted her head and apologised.
She had found the account. The name on the account was just as Tyson had described, and the same as his ID showed. I asked to see the policy that Tyson was not entitled to another free card as he had been told in Nhulunbuy. She checked his records and it was clear he had not exceeded any card limits. Minutes later she informed us the card would arrive in the mail within days.
Tyson refused to look up as we left, and remained silent for the rest of the day.
When we got back to the hotel where the team was having a barbecue I gathered Oliver and Jennifer to hear the ideas Tyson and Jacob had come up with to combat petrol sniffing, but both the young men just looked at the floor and mumbled. I handed them each a sandwich and they moved away from the noisy hotel crowd. I watched them for a long moment.
•
In the afternoon we headed back to the conference. Rukula called her husband just before her session began. He asked her to come home early. She had been looking forward to spending some time in Cairns, seeing family and doing some shopping for clothes for her big family at a fraction of the Gove prices but she immediately agreed.
It was her turn to speak. I felt anxious and sweaty but turned and sat in the audience, forcing myself to stay in my seat while Oliver introduced Sarah and Rukula, then asked Rukula to speak.
Her words were simple and heart-felt.
She told how she had hidden away in a tent, covered in long clothing and ashamed to be seen. Her family, especially her ten-year-old grandson, had suffered with endless illness and shame. She told about her hospitalisation, the masked and gowned people attending her while she was confined to an isolation bed. She described the trauma she had felt and why she had hidden away. She told of not wanting to speak to Doctor Buddhi when he first came around with Eva, her favourite nurse, but that together they had found a way to make her better at home. She had wanted to get well for a long time, she said, but had been too scared to ask for help.
And she spoke about how she was back at work now, and was again healing people in her community with her special knowledge. Her grandson was back at school and not getting bullied and her family all had healthy skin.
Finally she paused and looked at the audience.
‘I am a proud, strong Yolngu woman and it is not our custom to speak like this. But on behalf of other families who are hiding and suffering still today, I want to ask you all to take some time to sit with them and work together to find a way that helps them so that no family has to suffer like ours has . . . My message today is a simple one: “Yaka Gana. Walk with us. Don’t try and solve these problems alone.”’
I snuck a look behind me and saw a few people wiping their eyes. It was terribly rare to hear from a patient, a Yolngu, a non-clinician and someone with a real stake in the issue.
It was just one voice, but it was powerful.
Having done her job, Rukula asked me to organise an early flight home. On the way we stopped off to get her grandkids some clothes for school and Butjarri some new shirts for church and then shared some spicy Indian food at the evening markets and spoke about our families while we waited for the flight.
At the airport I gave her a big hug. ‘You’re a star, Rukula,’ I whispered.
‘You give Tanya and those beautiful children of yours a big kiss from Rukula.’
And she was gone.
Buddhi, left, working with Médecins Sans Frontières in Taliban-controlled Afghanistan, fresh out of Sydney University in 1997. (EveryVoiceCounts)
The start-up field team: Buddhi, Tanya and the kids. (Lynn Burke)
Working with east Arnhem Land elders and families to design the Healthy Skin Program. (EveryVoiceCounts)
A wealth of experience: One Disease healthy skin expert Wayalwanga, right. (One Disease)
Telling the healthy skin story: the amazing Aboriginal health worker and community leader, Wurrulnga. (Alex Kopczynski)
Wurrulnga and Lirririnyin command their audience, telling the healthy skin story to a group of young men. (Alex Kopczynski)
Setting off an indoor permethrin scabies bomb during a mini-healthy skin day. (EveryVoiceCounts)
Sue, left, and Rhonda: two inspiring remote health centre managers. (EveryVoiceCounts)
This photo is from the Medical Journal of Australia in 1948, in an article describing the disfigurement, misery and stigmatisation of crusted scabies in remote Australia. More than 60 years on, no solution has been found and crusted scabies
remains rife.
Disfiguring crusted scabies causes great suffering. (Reprinted with permission of the Massachusetts Medical Society.)
A healthy skin message stick ceremony: John Morgan, Chair of Miwatj Health, left, and Sam Prince, founder of One Disease. (One Disease)
The One Disease operations team. (EveryVoiceCounts)
Healthy skin day stories in the shade of a big mango tree. (EveryVoiceCounts)
The best bush electrician in town, Bruce, bringing an old washing machine back to life. (One Disease)
The Blackass Boys of Ramingining back from a hunting trip: community workers, filmmakers and future leaders. (EveryVoiceCounts)
Our son being taught how to make spears on East Woody Beach, Nhulunbuy. (EveryVoiceCounts)
POSTSCRIPT
In the years since Rukula’s presentation, I have been back to Yalambra many times, mainly to catch up with old friends. I always pay Rukula a call and we sit together on her verandah sharing stories about our families. Each time when word gets out that I am approaching, Yinarri comes bounding out of the house and gives me a huge hug. With bright, shiny skin and heaps of energy he tells me what he has been doing at school. If we achieved nothing else, I will always feel proud of what we did for this little person. He has regained his childhood.
I still return regularly to work in Arnhem Land, but now as the GP of Ramingining clinic. On one visit I saw One Disease program staff attending the clinic for their regular follow-up of crusted scabies patients across east Arnhem. The program has expanded into additional communities and, just as Tanya and I had done a few years earlier, the visiting team spoke to the clinic staff about the importance of connecting with patients and families, not blaming them. I was thrilled to see my old friend, Bruce the banana farm electrician, too. He continues his work with the program, servicing broken washing machines in the region at a small cost to families. I felt like a parent proudly watching our field work all grown up. I’m sure there are constant setbacks and challenges, but despite his growing list of commitments, Sam continues his personal involvement in the details of the program’s work, and in supporting his staff in the field.
Tanya and I continue our journey together, trying our best to be good friends, good parents and good partners on our work with EveryVoiceCounts. Rukula has been to visit us on our little farm north of Sydney. Our children showed her their lovely local school and we wandered around Tanya’s garden, buzzing with bees and full of vegetables. Rukula and I travelled to Sydney so that we could meet CEOs and some politicians who could help us continue to take her message of hope from the Top End to the national stage.
On her last night, the kids snuggled up to Rukula as she told them stories and showed them photos on her iPad. But there were no photos of her husband. He had passed away not long after Rukula’s brave speech.
A free companion guide to this book, A how-to guide on partnerships for change, is available to download on our website (below). It examines the theories and strategies behind being a good field partner to address entrenched disadvantage. Please join us and continue the conversation at
www.EveryVoiceCounts.org
ACKNOWLEDGEMENTS
For opening their doors to another set of strangers and for their courage to trust us with their health and their pride, we are deeply grateful to, and inspired by, the individuals and families we worked with in remote Northern Australia over the years described in this book. These families have suffered in silence and borne a burden few have to bear. We are grateful for their help in designing the program, in showing us how to be better partners, and mostly for their friendship. We invited an elder to author this book with us but the stigma associated with the disease is still great and she requested anonymity. She did ask us to tell these stories and advocate for other families so they would not be blamed and have to suffer like hers. We are deeply grateful. To the excellent staff and boards of our program partners at NT Health, Miwatj Health and One Disease, we are grateful. Especially to Eddie, Angela, Terry, Wendy, Harvey, Wayals, Christine, Elizabeth, Judy, Will, Steve, John, Terrance, Sue, Rhonda, Joseph, Dino, Rick, Samantha and Alex, who showed faith and patience and gave us the time we needed to sit and listen and ask, before having to jump in. And to Sam, who listened patiently for long hours, who stood by us in often turbulent times, and always did all he could so that we could always put our patients, their families and communities, first. We are also very grateful to our editors at Allen & Unwin, who were always supportive and showed belief in the work, especially Elizabeth, Aziza and Vanessa. Tanya would like to acknowledge her first gurus, mum, dad and her brothers, who gave her the courage to keep learning and her big guru, Buddhi, whose medicine is always inspired, and NH, who is, herself, a story of hope from the Top End. Buddhi would like to thank his Amma who embodies metta, his Thatta who lives his ideals, and his brothers and sister who have been kalyana friends. He feels very lucky to be on this journey with Tanya who makes the story so much richer. And finally we would both like to thank our three little gurus, Kalyani, Marley and Sashi, who teach us something new every day.
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