Vicki Wade is the head of the Heart Foundation’s First Nations Heart Health Program, about which she swings from optimistic to disheartened. But she also has a wonderful story of strength, hope and restoration.
Despite years of efforts and a commitment to the World Health Organisation to fix Rheumatic Heart Disease (RHD) by 2031, Australia hasn’t moved the dial enough and it remains at crisis levels in many Indigenous communities.
“The rates haven’t improved,” Wade says. “Unless something happens dramatically, unless there’s money to improve housing, to improve the environment, I don’t think we will reach that target by 2031.”
Despite the pessimism, Wade has seen some very strong Indigenous-led community based strategies.
Wade, a Noongar woman from south-west Western Australia, is a third-generation health carer, and a highly skilled cardiac nurse.
“I became a cardiac nurse consultant quite early in my nursing career. I practically ran the cardiac ward,” she says, with a laugh. “My director would say, ‘Listen to Vicki, tell the registrars, you listen to Vicki, she knows what she’s talking about.’
“My grandmother, Lily, was born under a birthing tree. She helped all the other Noongar women on the mission. She helped all the babies coming. Then my mum was born on a mission. And she was an enrolled nurse. And then I was born in a hospital, the first one to be born in a hospital. I was a registered nurse. And then … my daughter is a doctor.
“But my grandmother, she took herself off to TAFE to learn to sign her name when she was about 70, we think. She had no birth certificate. But I say she’s our first academic. She was a gynaecologist, a paediatrician, a lawyer and an educator.”
It’s a heartwarming story.
Wade’s now dealing with one of the most intractable health problems in Australia: A problem which only impacts Indigenous communities, and which is easily solved.
She believes housing and the living environment of Indigenous kids is one of the biggest problems.
“Yeah, probably both. There remains a lot of household crowding in remote Aboriginal communities.
“We’ve just been doing the Take Heart screening in the APY lands [in South Australia] and in Central Australia, and, you know, within one house, you could have 10 kids coming out of a three bedroom or two bedroom house. So children are sleeping five or six in one room, probably [on] two mattresses.
“So the housing and the environment needs to improve, before we see a change in those rates. There’s still a lot of children who have unhealthy skin. Up to 50% of the children in remote communities at any one time will have unhealthy skin. And this directly cause Acute rheumatic fever.”
Wade describes “the environment” as a place to live, work and play.
“It’s not just a building, a structure. It’s health hardware. One community didn’t have running water for six weeks. So kids would come to school with dirty shirts on. They haven’t had access to any washing facilities.
“So it’s the health hardware. So it’s the laundries. It’s ability for communities to be able to keep a healthy environment that they live in, too.”
It’s not just a building, a structure. It’s health hardware. One community didn’t have running water for six weeks. So kids would come to school with dirty shirts on.Vicki Wade
A whole range of health issues that effect Indigenous families are blamed on overcrowded housing, lack of health care and facilities, and poor hygiene practices. Wade has an example of a place where community involvement led to heart-warming change.
Maningrida is one of the Northern Territory’s biggest Indigenous communities. It’s home to 2600 people, 500 kilometres east of Darwin on the far north coast of Arnhem Land.
“Maningrida is probably one of the best stories where things have changed,” Wade says. “[The RHD program] it was run by and led by the community. It has to be First Nations led.
“Communities first of all, need to understand the problem. They need to understand the link between sore throats, the environment, unhealthy skin, and that [these things] lead to acute rheumatic fever which can then lead to rheumatic heart disease and valve disease for the rest of your life.
“The community need the story but they need the story told in a way they can understand. Some of these communities have English as the 13th language. Maningrida is probably one of the world’s most linguistically diverse communities, they either sign or speak 20 or more languages a day. So going telling them about a germ theory or a theory of group A streptococcus just doesn’t resonate with them.
“But the community said we’re sick of seeing our young children suffering from this disease. They had screening and identified these children that had acute rheumatic fever, or had rheumatic heart disease, some of the highest rates in the world.
“And then the community said, ‘Look, we can’t keep burying our young children.’ There was a death of a three year old up there from it.
Communities first of all, need to understand the problem. They need to understand the link between sore throats, the environment, unhealthy skin, and that [these things] lead to acute rheumatic fever which can then lead to rheumatic heart diseaseVicki Wade
“So they said we need to do something. So when I was director of Rheumatic Heart Disease Australia, we did this program in the school, in their own language. We taught people, they taught the community in their own language. And […] it was how they understood, it was how it was relevant to their worldview, really.
“And then we had children that were getting school sores, going to the clinic and saying, ‘I’m coming to the clinic, because I don’t want that heart problem’.”
So it really empowered the community for change. It was transformative in the fact that it was First Nations lead, First Nations owned. Really, they took charge of it, they owned it, they wanted to improve it for the community. It was in language; it was in metaphors, similes that they understood.
“So they changed a complex germ theory in a way that made sense to them. And the rates did fall.”
For many years health care workers, educators, community managers and other people working in First Nations communities have understood that the key to improvement of living standards lies within self-determination, but health data shows there are still problems and some communities remain in crisis.
“You talk about agency, you talk about Aboriginal peoples’ self-determination,” says Wade. “People will make you believe that you have it, but [you don’t] really because there are other people making decisions. So the decisions really need to be made and listened to by the community.
“It’s a really strange thing because it’s very disempowering. When you think you do have the power and you don’t, and Aboriginal people don’t. We don’t respond because we’ve been let down so many times throughout history. Our rights are human rights and we’re backed into a corner sometimes and just do nothing.
Wade says an amplifying factor is that a lot of Aboriginal people still won’t seek hospital treatment unless they’re “really, really sick”. She says that there’s unfortunately still discrimination against Indigenous people at hospitals, and that some health services aren’t culturally safe places.
She says it’s not all hospitals, but some, and that news of a bad reputation spreads easily: “So Aboriginal people talk about how they were treated, and we just get too scared to go to those places.”
It leads to the obvious question – is radical improvement in health outcomes about behavioural change in Aboriginal communities?
“Yeah…behavioural change is an interesting sort of concept and model,” Wade says. “It’s sort of — whose behaviours? To me there’s a difference between Western ideologies of what behaviour is in Aboriginal cosmologies.
“You’ll talk about Indigenous epistemology and ontology, which is ways of knowing, being and doing, but I call it indigenous cosmologies, because this includes how we respond spiritually and our connection to land, our connection to people.
“The way we behave is really based on our culture, and a deep sense of who we are as First Nations people. So if you’re looking at behaviour from that Western ideology and construct, it’s not going to be the same as we do.”
Wade was a cultural adviser to a Queensland coroner who recently handed down a report into the deaths of three women in far north Queensland who died from RHD or heart problems.
“That coroner’s report […] was so, so hard for me to read, because I could see how Aboriginal people’s behaviour could be misconstrued, as non-compliant, [or] don’t give a damn about our health, or failing to report. There are so many cultural issues to unpack there.
“So when you talk about behaviour, you need to look at it from a different perspective. I believe that colonisation has led us to disempowerment, feeling that we don’t have locus of control or a sense of control. We don’t have the empowerment and this belief leads to behaviour that could be seen as detrimental to our health or is not looking after a health when in fact it’s you know, [it’s] 250-odd years of colonisation, and it’s still happening.
“So if we can see behaviour that way, and then ask how do we work within a cultural paradigm to change behaviour? How do we use culture not as a barrier but as a powerful enabler?
“White people can’t do it. They can be, you know, they can be sympathetic, empathetic, but really, it is very complex behaviour, a complex way that our cultural obligations are still there.
“So it’s going to be done by people like me, talking to other Aboriginal people. It will take people like myself, people who know the worldview where Aboriginal people are coming from.”