Home Is More Than a Place – Bakala’s Story
Connection to Country. Kin Connect. Staying Stronger for Longer.
The MJD Foundation often speaks about helping people living with Machado-Joseph Disease stay stronger for longer. At first glance, it sounds like a philosophy centred on physical strength. In reality, it means something much bigger.
Exercise, therapy and good medical care all play an important role in helping people maintain their mobility, independence and quality of life. But for Aboriginal families living with MJD, there is another kind of strength that is equally important. It is the strength that comes from remaining connected to Country, culture, language and family.
Country is not simply somewhere to visit. It is identity. It is belonging. It is where stories are held, where ceremony takes place, where ancestors walked and where responsibilities are passed from one generation to the next. It is home.
As MJD progresses, many people eventually reach a point where the specialised care they need simply isn’t available in their remote community. To remain safe, they must move hundreds of kilometres away into supported accommodation in Darwin or other regional centres. It is one of the cruellest realities of living with MJD. While the move provides access to the clinical care they need, it also separates people from their families, their language, their culture and the Country that has shaped them throughout their lives.
That is why the MJD Foundation created the Kin Connect Program.
One of the Foundation’s most significant initiatives, Kin Connect supports Aboriginal people living with MJD to return home to their remote communities whenever it is safe and possible to do so. These journeys are far more than visits. They reconnect people with family, culture, ceremony and Country, recognising that emotional, spiritual and cultural wellbeing are inseparable from physical health.
Organising each journey home is an extraordinary undertaking. Depending on a person’s care needs, it can involve specialist equipment, hospital beds, hoists, accessible vehicles, charter aircraft, barges, volunteer support workers and months of planning involving care providers, clinics, Aboriginal organisations, the NDIS and the Foundation’s own staff. Much of this work falls outside NDIS funding and relies on the generosity of donors and supporters who understand the importance of bringing people home.
Despite the complexity, everyone involved says the same thing. The moment someone arrives back on Country, every challenge is worthwhile.
As one of the Foundation’s Senior Cultural Advisors explains, “That Kin Connect Program, bringing people home to their community when they have to live in Darwin, it’s so important. It makes their heart strong and lifts their spirits.”
Few people understand that better than Bakala.
When Laura Ferrie talks about him, she doesn’t begin with Machado-Joseph Disease. She begins with the man.
Bakala is a respected cultural man from Groote Eylandt. Before the disease reaches its advanced stages, he is deeply involved in community life. Laura remembers him as someone who helps establish the media centre on Groote Eylandt, spends countless hours at the Men’s Shed with other senior men, travels to places such as Barunga to film community events, and plays an important role in ceremony and cultural life. His connection to Country isn’t simply something he values. It is woven into every part of who he is.
“He always wanted to stay independent,” Laura says. “If there was something that helped him keep doing things for himself, he’d give it a go.”
That determination becomes one of his defining characteristics. As his balance and coordination gradually decline, Bakala embraces anything that allows him to remain active in his community. His mobility scooter becomes a symbol of that independence, carrying him around Angurugu to visit family and stay involved in community life. Laura smiles as she remembers the occasions when the battery would run flat before he made it home, leaving someone to retrieve both Bakala and the scooter. It is a funny story, but it also says something important about the man. The scooter isn’t simply a piece of equipment. It represents freedom, dignity and his determination to keep living life on his own terms.
Eventually, however, Machado-Joseph Disease reaches a point where determination alone can no longer overcome the realities of living in a remote community.
Transfers become increasingly difficult. His wife, Shirley, who has spent years caring for him while continuing to work full time, injures her back helping him. At the same time, unrest within the community creates serious concerns for the family’s safety. Together with Bakala, Shirley and those closest to him, the difficult decision is made for him to relocate to supported accommodation in Darwin, where he can receive the level of care he now needs.
Leaving Groote Eylandt is never simply about changing address.
It means leaving home.
Laura remembers just how difficult that transition is.
“He fought really, really hard for it,” she says, speaking about Bakala’s determination to continue returning home. “Return to Country is honestly the thing that’s kept him sane.”
Those words reveal something that cannot be measured in a clinical assessment or captured in an NDIS plan.
For Bakala, returning home isn’t a holiday. It is an opportunity to reconnect with the people, places and cultural responsibilities that have shaped his entire life. He returns for important funerals, men’s camps, time with family and visits to Country. These aren’t occasional trips. They are an essential part of maintaining his identity.
Over time, Return to Country becomes more than a journey. It becomes something Bakala can hold onto. Even when a trip can’t happen exactly when he hopes, Laura says he trusts the Foundation will do everything possible to make it happen.
“It’s knowing when they’re coming, being able to see them coming, and trusting that we’ll do everything we can to get him home,” she says. “I think that’s been a really critical foundation for him.”
Behind every one of those journeys is an enormous amount of unseen work. Flights are coordinated. Risk assessments are prepared. Specialist equipment is transported. Accessible accommodation is organised. Support workers are recruited and trained. Medical appointments, transport, vehicles and community activities are carefully planned so that, for a few precious days, someone can return to the place they belong.
Most Australians never have to think about what it takes to go home.
For families living with Machado-Joseph Disease, going home can become one of the most important forms of care they receive.
Every time Bakala wheels off the plane onto Groote Eylandt, he returns to much more than a community. He returns to the place that shaped him, the people who know him and the culture that continues to give his life meaning.
For the MJD Foundation, that is what staying stronger for longer really means. Sometimes the most important medicine isn’t found in a hospital, a therapy room or a piece of specialist equipment. Sometimes it is found in the simple, powerful act of bringing someone home.
Story by Tom Hearn
With thanks to our supporters
Bakala’s Return to Country journey was made possible with the generous support of GEAT (Groote Eylandt Aboriginal Trust), Groote Eylandt Lodge (GEBIE – Groote Eylandt and Bickerton Island Enterprises), and individual donor Kate Gordon.
We sincerely thank them for helping Bakala reconnect with Country, family and community.