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Steve ‘Bakala’ Wurramara comes from an island in the Gulf of Carpentaria, called Groote Eylandt.

To get there from Darwin, you must first fly 1.5 hours across the striking landscape and deep red earth of the Northern Territory, with the final 20 minutes over captivating cerulean blue waters.

It’s a remote island in North East Arnhem Land and the traditional country of the Anindilyakwa people, Bakala’s people. It’s an ancient and beautiful land, but it protects a tragic, once secret story.

It was a secret of shame and blame. And it remains the story of the struggle of this proud and ancient people with an old and deadly foe, a fatal inherited disease called Machado Joseph Disease (MJD).

Bakala lives on Groote Eylandt amongst a population of around 1,100 Aboriginal Australians.

First experiencing symptoms of MJD in his late teens, Bakala has lived with the progressive onset of this insidious and debilitating neuro-degenerative disease his entire adult life.

While working on an MJD Foundation clinical education project in 2015, a filmmaker from Zakpage spent much of his time on Bakala’s traditional country. In a serene swimming hole, Bakala revealed to him a somewhat whimsical, though heartfelt desire. He wanted to find a cure for MJD somewhere there, out on country, from the land itself.

Maybe from a plant or a balm or even a ceremony, or a practice. Magic, and the belief in its presence and power, is still strong among the Anindilyakwa people. Talk of curses and sorcery are never far from local conversation.

As that day ended, Bakala, backlit by the golden remains of the day, stood in the river, a vision as old as time, and thanked his ancestors for giving him this life and this country.

An idea started to foment in the recesses of the filmmaker’s imagination, and ‘Bakala’ the film was born.

Bakala is also well known to Telstra. What started in 2010 as a tiny seed grant from the local Country Women’s Association to purchase a few iPads, caught the Telstra Foundation’s attention. And in 2013, the Telstra Foundation partnered with the MJD Foundation to fund a communication program incorporating a research component to explore the use of digital technology to help people living with MJD.

It’s this partnership that led to Telstra rolling out the red carpet at its headquarters in Melbourne to welcome Bakala who flew 4304km to premier his film. Telstra employees from across the organisation came together as part of NAIDOC Week to welcome Bakala to Melbourne and hear his story.

MJD is a cruel and complex disease, robbing those who have it of their independence and dignity.

It occurs in families, with each child of an affected person at a 50% risk of developing the disease themselves, almost always at an earlier age than their parent.

Although it’s a rare disease, the incidence of MJD in these communities is the highest in the world, and is now known to have entered the North East Arnhem families through Chinese traders many centuries ago.

By telling his story, Bakala is hoping to raise funds for the MJD Foundation’s Research Program to continue to search for a treatment for Machado Joseph Disease. Of funds raised through the film, 100% will go directly to research with no overhead costs.

We talk with Alison Page of ZakPage Productions on filming in the harsh Australian outback, male G-strings and the creative process for Bakala the Film…

When did you first start the Bakala film project?

The project really started a couple of years ago when Nik (The Director) was with Bakala out on country in Groote Eylandt and he was talking about this dream that he had where an Ancestor came to him and told him to look to the traditional medicines for a cure. Bakala, being a filmmaker himself proposed to make this story into a film.

We then had a conversation with MJD Foundation in early 2016 about how art can be a hook to stimulate conversations about health and started the ball rolling. The final piece of the puzzle was the financial support from the Anindilyakwa Land Council and the OK from the Elders on the Island.

Can you tell us about the creative process for the film?

It was very much a collaborative process. Nik’s role as a Director was to create a space where the actors could improvise scenes. So while it was mapped as a narrative, the scenes themselves were driven by the cast, especially Bakala. We were all conscious of making a film that has artistic integrity and high production values so as to honour Bakala’s story and the work of the Foundation.

How did the concept of Bakala evolve?

Nik and Bakala explored many different narrative threads but seemed to always navigate back to the quest for the cure, which was the original dream that Bakala had. It is a powerful story especially in that the bundles of medicine that Bakala gathers are in reality being sent to be tested at Macquarie University for effectiveness in treating MJD. So although we explored lots of dramatic and fictitious threads, we always came back to the simple truth of Bakala looking for the cure.

Nik and I were worried about the performances of the actors but they were brilliant. We had community meetings where Bakala would inspire and motivate people to be a part of the film and they all rallied around him. It was a beautiful thing to be a part of.

Tell us about filming on such rugged and remote landscapes

The filming process was grueling. We had a very small crew that worked in incredibly hot conditions over the new year. We all had a part to play in production design, which took around 8 days and the filming over 6 days. The place itself is stunning so although we had to suffer through the wet season, the atmospherics every afternoon and the locations were beautiful.

We almost bogged the car on the beach, on the bush track to the beach and on the bush track to the lake. The boys enjoyed that much more than I did.

We also got a very expensive camera wet…that wasn’t good….at all.

Any funny moments on set with Bakala, the cast or crew?

Film making can be a pretty slow process, so the funniest moments were when Bakala and Derek would start to direct to speed things up. Hilarious.

For the beach scene with all the men in lap-laps, I bought along a bunch of male G-strings so that their ‘packages’ could be safely contained. The discussion about whether to wear them or not was pretty funny. Only Djaymila did.

What was it like working with Bakala and his community on Groote Eylandt?

All the crew agreed that it was a life changing experience filming with Bakala on Groote Eylandt. We spent new years eve with Bakala and his family dancing out on the verandah of his house, which was pretty cool. They made us feel like a part of the family.

We put up heaps of posters and did a fair bit of consultation in the lead up to the filming so everyone knew who these strangers were and what we were up to. That’s important in remote communities, especially when it comes time to recruit people to work on the film.

Some of the younger men and women were truly inspiring. Listening to Ramson Lalara singing was breath taking and I was really happy to mentor Shirleena Murrungun on the production. She would make a great Producer!

What was Bakala’s reaction when he first saw the film?

We weren’t with Bakala when he first saw the film but we are friends with him on Facebook so…..let’s just say he is pretty proud.

Can you tell us about seeing the realities of MJD first hand?

Witnessing the day to day realities of people living with MJD in a remote community is heart breaking. Things like trying to get into a light plane when you can hardly walk, push a wheelchair across dirt and sand. Really hard, but you would never hear anyone complain.

Bakala is a champion. He worked so hard on the film and even when we could see him getting very tired in the afternoons, he would urge us to push on. He has a very strong character. I can’t wait for the world to meet him.

Can you describe the impact of the MJD Foundation’s work in the communities you visited whilst on location?

The MJD Foundation is such a valued and treasured organization not only on Groote but across Arnhem Land. They not only provide practical day to day relief for sufferers and their families, but what they are doing is at the forefront of scientific research. They are bringing the richness of traditional knowledge together with the best of western science to help people with MJD.

What do you hope the impact of this film is on its audience?

I hope that audiences will join Bakalas quest to help find a cure in the traditional medicines of the land. There is such a wealth of cultural and scientific knowledge that can be harnessed to fight a myriad of ailments but indigenous communities need help to unlock this knowledge before the knowledge dies with the elders.

Where you do you currently live?

I mostly live in Angurugu community on Groote Eylandt, but I am also studying a Certificate II in Media at Batchelor Institute in Darwin, so I’ve been staying in there sometimes too.

Describe an average day for you, now that you’re not filming?

I still do some filming most days. I film local ceremonies and like to tell my people’s stories. I am also enjoying spending time in Darwin at Batchelor Institute and visiting family who are living in Darwin. I’ve shared some of my stories on youtube, here’s one of my favourites:

How did you feel when the MJD Foundation asked to create a film about your story?

I was really happy because I love making films and I really wanted to tell my story about MJD and the dream I had where my ancestors told me where to find a cure.

Did you work closely with the film directors to create the film, in terms of the storyline and scripts?

I already worked with Nik (Nik Lachajczak from ZakPage) and Browndog (Justin Brown, Browndog Productions) making some DVDs about MJD to teach doctors and nurses. And also to create a Telstra promotional DVD about how Telstra helps us with our communication and the iPad project. So I knew Nik already, and yeah, we worked closely together on making the story and writing the script.

What was your favourite part about creating the film?

The beach ceremony scene was the best. A big wet season storm came in just at the right time. I am also called the rain man, so it was good when the rain came just when we needed it for the story.

Do you have any funny stories or anecdotes about the process of creating this film?

We had a lot of good times and laughs, like this one…

What was the most challenging or difficult part of the process for you?

It’s hard to tell this story. It’s not only me, but many of my family with this disease. Many of my family have finished up with this disease.

Has life changed since you had a film created about your story?

People are proud of me for making this film. And I am about to have my first ‘red carpet’ walk in Melbourne on 7th July at Telstra.

I understand you’re also sending samples of the bush medicines to researchers in Sydney. Can you tell us about this process?

We got some seaweed, and dried it out. Then we put a label on it to say what is was and where it came from. And we sent it to Dr Angela at the Zebra Fish lab at Macquarie University. We are hoping to do more of this and looking for funding for this project. I haven’t visited the fish yet, but I hope I will when I go to Sydney.

How does MJD affect your everyday life? Is there something, for example a hobby, that you aren’t able to do anymore?

I am getting more wobbly now, but I work hard to stay strong and do my exercises with MJDF. I fall over more these days. My paintings are a bit too wobbly now. I want to stay on my community and be as independent as possible. I want to keep doing filming and storytelling.

How has the MJD Foundation helped you through managing life with the disease?

MJDF helps me a lot. And they help me every day.

How do you hope people will react to your film?

I hope people think it’s a good story, and I hope it touches their hearts. And I hope they understand how much we need to do more research.