Undrinkable water and casual racism: The reality of Indigenous health in Australia.

WARNING: Aboriginal and Torres Strait Islander readers are advised that the following article contains names and descriptions of people who have died.

She goes to turn on her kitchen tap, but the water is undrinkable.

Not because it tastes a bit ‘chlorine-y’. For years, the water has been contaminated with uranium, more than three times the concentration limit recommended in Australia’s drinking water guidelines.

And she’s seen many neighbours in her community in Laramba, Northern Territory end up with kidney disease. 

But no government has fixed it.

*****

Betty Booth is 17-years-old and lives in Doomadgee, remote north-west Queensland. She has Rheumatic Heart Disease (RHD). One night, she struggles for breath and coughs up blood; acute signs of heart failure. She is rushed to hospital. 

But triage refuses to see her. Instead, a couple Panadol tablets are shoved beneath the security grate, and she is told to go home. 

A few days later, she is buried in the Doomadgee Cemetery. 

*****

Donna* lives in government housing in Melbourne’s inner-north and receives support from the National Disability Insurance Scheme (NDIS). She walks with the aid of a walker, but her bathroom door is not wide enough for it to fit. She is scared to report it to the housing department; they are a part of the government, and the government took her children away. 

So mostly, she tries to make do. 

But mostly, she doesn’t make it to the toilet in time. 

She needs to tidy herself up afterwards. 

*****

ABC's Four Corners report, 'An investigation into the hidden killer in Australia’s remote Aboriginal communities'. Article continues after video.

These accounts are all real stories of Australians - our first Australians. Indigenous women. 

Not from 50 or 30 or 15 years ago. But from today. 

Today is the final day of Reconciliation Week. It offers us all an opportunity for learning about our shared histories, cultures and achievements. And it’s a time for reflection and conversation too: How can each of us play our part in achieving reconciliation in Australia?

‘Be Brave, Make Change’ - That’s the theme for Reconciliation Week this year.

Today marks the start of #ReconciliationWeek and 55 years since the 1967 referendum.

55 years on and #HistoryIsCalling for another historic referendum for a constitutionally enshrined Voice to Parliament. Let's set the date and get this done ❤️💛🖤#UluruStatement #NRW2022 pic.twitter.com/He8xjPAmk4

— ulurustatement (@ulurustatement) May 27, 2022

But to make change, we need to understand the myriad of issues underlying the need for reconciliation. We need to open ourselves to learning more, to being uncomfortable, and to truly acknowledging the wrongs inflicted upon the world’s oldest continuing civilisation, Australia’s First Nations. 

And I’ll be honest with you: As someone who studied Australian History in year 12, and majored in history at university, and holds an honours degree in history; as I immersed myself into reading, and talking with different people, and heard their pain over these past few weeks, I realised I still had a lot to learn.

I’ve been shocked and appalled - and I’ve shed tears too.  

It’s not a ‘gap’ that exists between Indigenous and non-Indigenous Australia; it’s a gaping hole - in education, housing, employment, mental health, family violence, children in out-of-home care, youth detention, incarceration and deaths in custody. 

And health. 

And to understand the health crisis faced by Indigenous Australians, it must first be accepted that no one problem exists in a vacuum. 

The issues are intricately interwoven, and ripple in effect. 

Colonisation, dispossession, the removal of children, forced assimilation and racism resulted in a trauma so deep, so entrenched, that it cannot be contained to one generation. It is inherited and accumulative; and while it might not always seem to be so overt, it persists today. 

Because you can’t separate Indigenous history from the Indigenous present. 

For thousands of years, connection to community, culture, kinship and country were the pillars of Aboriginal and Torres Strait Islander identity; as were sharing yarns and belief systems and tribal lore and practices down the line. 

But European settlement saw a break in an ancient chain. Links scattered. People were displaced; disconnected from purpose and belonging. 

And it compounds and continues to impact on health today, wrote Kungarakan elder and Aboriginal and Torres Strait Islander Social Justice Commissioner, Professor Tom Calma.

“Cultural practices, traditions and identity have been interrupted which has had a devastating impact on the health of Aboriginal and Torres Strait Islander peoples.

“Aboriginal people also experience significant socio-economic disadvantage, which is strongly related to poor health outcomes.”

And within that community, another group faces even greater disparity again. 

Women. 

The average life expectancy for Indigenous women is just 75.6 years of age, compared to 83.4 years for non-Indigenous women.

According to the Australian Bureau of Statistics, Indigenous women are more than 10 times as likely as non-Indigenous women to have kidney disease; more than four times as likely to have diabetes/high sugar levels; and are nearly twice as likely to have asthma.

They are four times more likely to die from cervical cancer. 

And then, there are the extreme rates of Acute Rheumatic Fever (ARF). 

ARF is the autoimmune response to a Strep infection, and several bouts of it commonly causes Rheumatic Heart Disease (RHD) where damage to the heart valves can occur, often leading to heart failure, stroke or death. 

RHD is a preventable disease and one of social disadvantage - usually due to overcrowding and poor housing conditions. 

As upward social mobility took flight, it was all but eradicated in 1950s-1960s white Australia. 

But it’s a different story for Indigenous Australia: 95 per cent of all ARF sufferers are Aboriginal or Torres Strait Islanders. 

For women, the picture is more grim: 107 Indigenous females in every 100,000 have AFR (as opposed to 86 Indigenous males), while rates of RHD are also higher among Indigenous women. 

It was an issue explored by ABC program Four Corners in March this year in the episode, ‘Heart Failure: An Investigation into the Hidden Killer in remote Australian Communities’. 

In the remote Queensland Indigenous community of Doomadgee, the rate of ARF is enormous - and increasing. 

A screening of children in July 2019 found 4,400 cases in 100,000 people. It’s one of the highest rates in the world, even higher than sub-Saharan Africa, said CEO of the National Aboriginal Community Controlled Health Organisation (NACCHO), Pat Turner. 

👇A landmark investigation from @Milliganreports @NSelvaratnam @L_Day with stunning cinematography from @johnnyturk tonight on #4Corners pic.twitter.com/Emra6hAFlQ

— Sally Neighbour (@neighbour_s) March 7, 2022

“If that was a white kid, in middle class Sydney, you know, there'd be an uproar, okay? But it's not a white kid… It’s an Aboriginal kid living in the bush. Does that child deserve any less than a white kid living in middle class Sydney?”

Betty Booth was just one young woman from Doomadgee who tragically lost her life to the disease. After being diagnosed with the RHD, notes were left on Betty’s medical file that she should be scheduled for urgent heart valve surgery, and her case be reviewed weekly. 

It didn't happen.

Four days later, she attended Doomadgee Hospital’s emergency department with a terrible cough, the first of a dozen times that she presented with acute symptoms over the ensuing two months - but not given the treatment she so urgently required. 

Instead, she was sent away with Panadol. 

On Betty’s twelfth visit, hospital staff finally decided she should be flown out to a bigger hospital. A plane was ordered from Townsville - 850 kilometres away - rather than the closest regional hospital at Mount Isa. She was categorised as ‘low dependency’. Not urgent. 

In the meantime, Betty’s family members were not allowed inside the hospital to be with her. 

Three hours later, the plane arrived. But it was too late. 

By that time, Betty had died. 

After her death, a grieving and angry community protested at the hospital. Queensland Health launched a review which found clinical risk and poor clinical governance, low expectations for Aboriginal patient’s health, and an unwelcoming hospital environment where staff had “limited understanding of Rheumatic Heart Disease”. 

But Betty’s family weren’t notified of the review outcomes until Four Corners made enquiries about her case - a year and a half after the findings of the review were released. 

Betty’s cousin, Marilyn Haala told Four Corners, “Because they said, 'Oh, that's another blackfella gone. Who cares? Not gonna waste time…They didn't care. I'm not ashamed of saying that. We feel like they treat us like animals”.

Adele Sandy also suffered from RHD. In May 2020, the 37-year-old mum of three repeatedly presented to Doomadgee Hospital with serious symptoms. Repeatedly, she was dismissed with pain relief tablets. 

By the time she was finally admitted, she was in heart failure. 

Her concerned mother and aunties - well-respected tribal lore women - pleaded to be with her, but were not permitted to enter the hospital. They begged for Adele to be flown out for emergency care. 

Adele’s mother, Eunice Diamond told Four Corners, “I felt like an animal, hanging around the door, for my daughter. I was like the horse that come hanging round the door for my foal. And they wouldn't let me in there.”

Adele Sandy's mother, Eunice Diamond describes her grief. Image: Four Corners, ABC. And then, a police officer came out to deliver the news: Adele had died. 

“[When he] told me and my other two sisters, we just fell to the ground. I was in darkness. I cried till I couldn't cry no more tears. I just lay there in people’s arms that just came along and nursed me. I stayed like that till next morning,” said Eunice. 

A few months later, Betty Booth’s friend, 17-year-old Shakaya George also experienced RHD. 

She too didn't receive the medical attention she desperately needed, and was pinballed from hospital to hospital across Queensland. By the time she reached Brisbane Hospital - two weeks after her first admission - too much damage was done. Following surgery, her organs failed. 

She died three months before her 18th birthday. 

A coronial inquest into the deaths of Adele Sandy and Shakaya George is currently underway. 

‘There is still a lot of unconscious bias and racism.’

Pat Turner is a revered figure; a Gudanji-Arrernte woman with a long history as an Indigenous and women’s rights activist. Aside from being CEO of NACCHO, she was the founding CEO of NITV, and is an advisor to the establishment of an Indigenous voice to government.  

NACCHO facilitates 144 Aboriginal Community Controlled Health Organisations across the country, bringing comprehensive primary health care to Aboriginal and Torres Strait Islander communities. It’s not just for Indigenous people - it’s largely run by them too, with more than half of their 6,000-strong staff of Aboriginal or Torres Strait Islander background. 

Speaking with Mamamia from Darwin, Pat reflects on the impact of institutionalised racism that still plagues many state-run hospitals. 

“Many Indigenous people also discharge themselves against medical advice, which I think is a sign of being unhappy with how they are treated, and not having access to their families,” she says. 

“There is still a lot of unconscious bias and racism across the board, particularly where you have large numbers of Aboriginal clients, so it’s about getting staff that are more culturally competent.”

“Some of the worst offenders are the nurses. They really have to smarten up their attitudes. They think they know everything, and they can be very direct and rude. A lot of Aboriginal people feel very confronted by that.”

NACCHO CEO Pat Turner addresses the National Press Club. Image: AAP. In 2010, Katherine Hospital in the Northern Territory was known as one of the worst facilities for Indigenous health in the country, and on the brink of collapse. At that time, one in four Indigenous patients left the hospital before completing treatment. 

But then, a new general manager was appointed, new doctors came on board, use of interpreters became standard procedure, staff training was improved and a shift towards genuine positive cultural change was embraced. 

“The care in every institution is different, and it really comes down to the management,” says Pat, citing the example of success set by Katherine Hospital, which is now deemed to be one of the best for Indigenous care in Australia. 

She adds that much of the current education around cultural sensitivity training is in the form of an online course that can be completed in just a couple hours. 

Andrea* is a NDIS case manager in Melbourne’s north-west, and has been for the past five years. She speaks with Mamamia on the condition of anonymity. 

While Indigenous Australians form just three per cent of the national population, almost six per cent are in need of disability support, and are NDIS participants. 

Andrea estimates around 60 of her participants have been Indigenous - majority women - many of whom have acquired brain injuries as a result of family violence, she shares.

Andrea has worked for three different service providers, and yet during her time in the sector, says the level of Indigenous cultural training has varied from “excellent” to “non-existent”.

And it has shown, with the casual racism she has witnessed.

Andrea says she has overheard comments by colleagues who say that Aboriginal clients should just “shut up and be grateful” for the support they receive. 

“For many of my elderly Indigenous participants, they don't even know who their parents are, or which community they belong to. So, they're isolated, they're in community housing, and it's incredibly sad. And yet, you have people working within the system with this ignorant opinion that they shouldn’t have extra support, while really, they have zero of the support that really counts - from family,” tells Andrea.

She has also heard management complain at having to perform an Acknowledgement of Country, or commemorating special occasions, like Reconciliation Week. And if it is marked, it is often a tokenistic gathering - without any Indigenous voices.

“There is an attitude of, ‘We’ve said ‘sorry’ - can’t they just move on?’. It’s appalling, and management often turns a blind eye.”

“In fact, in this past week, my organisation did not have any prepared resources for Reconciliation Week. No posters, no flyers. I had one Indigenous participant, eager to find a community event, to join with his mob. There was no information to give him. I took it upon myself to Google, and write a list of events for him, but his support worker found every excuse under the sun not to take him.”

'I'm too frightened to go to hospital anymore.'

As a result of racism or unconscious bias, and a historic wariness of white authorities, many Indigenous people are too scared to seek healthcare when required. 

“Trust has got a lot to do with it,” says Pat, “because of cultural respect and the cultural safety”.

Adele Sandy’s sister, Chaslyn Diamond doesn’t go to the Doomadgee Hospital anymore. 

“I suffer with toothache. I don't go,” she told Four Corners, continuing, “Mum told me to get the needle. I'm frightened to get that. I don't go to the big hospital anymore.”

And the fear is no different in the city. 

Andrea explains, “I find that my Indigenous participants are always the ones that are most likely not to report a problem. They are significantly more weary of mainstream services, because they are not confident in navigating it and because of a historical distrust. They’ve either experienced or witnessed the fallout from that”. 

As a result, many Indigenous people are foregoing preventative health care, early screening, and medical assistance when necessary. 

Professor Lisa Jackson Pulver is a Wiradjuri woman who has an intimate understanding of the systemic barriers Indigenous people face in accessing health care. 

From growing up in a home with family violence to finding herself a homeless teen, Lisa turned her life around. 

She became a nurse, and then the first Koori to achieve a PhD in medicine.

Now, she is an epidemiologist and researcher in Aboriginal health - and Deputy Vice-Chancellor Indigenous Strategy and Services at University of Sydney. 

Professor Lisa Jackson Pulver. Image: Supplied. 

She is also a strong advocate for outreach programs with a focus on “culturally appropriate health care that makes is easy for Indigenous people to take up these opportunities”.

“If people aren’t coming to you, you go where the people are,” she tells Mamamia, recalling times where she was a part of teams that went into schools in Aboriginal communities to give children vaccinations that protect against HPV.

In the early 2000s, Lisa joined the Well Person’s Health Check in the Far West Health Service. With a team of medical professionals, they pitched a tent clinic in an Aboriginal community in remote western New South Wales and stayed for two weeks. 

97 per cent of Indigenous residents attended, she says, “and we were able to diagnose an overwhelming burden of disease for diabetes, and cardiac conditions”. 

“One person was so ill, they were medivacced out immediately - and had a cardiac arrest on the plane. Fortunately, they were able to be resuscitated."

'The water is undrinkable.'

“Housing is a major issue,” says Pat Turner, continuing, “Giving our people the right health treatment is like a band aid until the overcrowded housing is dealt with.”

It is not uncommon for extended families to live in three-bedroom homes, where space is so limited for the number of people, that some sleep on verandahs, or outside in tents. But they all share the same one toilet, one shower and one wash basin. 

Infections spread easily. 

“There are massive issues with what we call, health hardware, just the basics of a working fridge, of a working shower, a flushing toilet, of having access to a washing machine. Many Aboriginal communities, many Aboriginal households don’t even have those basics,” Paediatric Infectious Diseases Specialist Professor Jonathan Carapetis told Four Corners.

Other obstacles to good health outcomes are a matter of logistics too. 

Distance from major regional centres is a factor in accessing specialist doctors. And there is a chronic shortage of doctors too. Migrant doctors are often relied upon, which can present additional cultural barriers. Existing doctors become burned out by the workload and leave the profession altogether.

Because of the remote location of many Aboriginal and Torres Strait Islander communities, there frequently is not the availability of fresh fruit and vegetables - and if it does make it in, it’s entirely unaffordable. 

The alternative? Fast food. 

While distance might not be an issue in the city, the rising cost of living and low-pension means that Andrea often finds her participants having little choice but to reach for unhealthy, cheaper food options. 

Access to fresh drinking water is also a major issue - particularly in remote Northern Territory communities. 

"Almost all remote communities are reliant on bore water and, as a result, there are concerns that groundwater is being exposed to large amounts of minerals, particularly heavy metals,” Kidney specialist from the Menzies School of Health Research Professor Paul Lawton told ABC News. 

The water is undrinkable, and so many are left either not consuming enough water, drinking too much soft drink instead, or having to spend already scarce income on bottled water.

Governments have promised and passed the buck over the years. Would it take so long to resolve this dire problem in Melbourne or Sydney?

Indigenous Australians in remote communities are disproportionately affected by kidney disease and diabetes, with studies now underway across 80 NT communities to ascertain if water quality is contributing towards these adverse health issues.

Meanwhile, in the NT community of Beswick, calcium levels in water are so high that kettles must be frequently replaced and washing machines regularly removed of lime and calcium build up. 

"That costs more money and we have to wash our clothes by hand and go to someone else's home to do our washing,” Aboriginal woman, Patricia Curtis explained to ABC News.

'Let the community dictate what it needs.'

According to Pat Turner, early screening and teams of full ranging allied health care professionals are essential in supporting Indigenous communities.

Professor Lisa Jackson Pulver tells Mamamia, “For the greatest change to happen, we need to let the community dictate what it needs.

Building Aboriginal and Torres Strait Islander community-controlled sectors to deliver services is one of the key priority reforms in the National Agreement of Closing the Gap - a partnership between Australian governments and Aboriginal and Torres Strait Islander peak organisations, that seeks to improve the health outcomes of Indigenous Australians.      

“A lot of really good stuff comes out of community views and viewpoints, because ultimately, if you ask people what they need, and give them the opportunity to express it, they'll often come out with a much better idea than someone who's sitting in an environment where they're paid lots of money to make decisions about poor people – when they haven't been hungry or impoverished themselves. They haven’t had that lived experience; because if they had, they would make different decisions,” says Lisa.

We're growing clever Aboriginal and Torres Strait Islander women who aren’t able to reach their potential, because often it’s the women who bear the brunt of all of these policies that are really designed for mostly middle class, white guys.”

When Reconciliation Week began last Friday, May 27, it marked the 55th anniversary of the successful referendum that constitutionally recognised Australia’s Aboriginal and Torres Strait Islander people, giving them the right to vote. 

Today is Mabo Day, thirty years since Indigenous man Eddie Mabo challenged the legal term ‘terra nullius’ (land belonging to no one) - and won. The Mabo decision led to the recognition of Australia’s First Nations Peoples as the traditional owners and custodians of the land, and set the foundations of Native Title.

Today we celebrate #MaboDay marking the 30th anniversary of the High Court decision in favour of Eddie #Mabo and plaintiffs as having rights to their traditional Country.

The ruling overturned the claim of Terra Nullius (land belonging to no one).

More: https://t.co/cpgCvZBbkW

— Indigenous Land and Sea Corporation (@IndigLandSea) June 2, 2022

Reflecting on her father’s legacy with SBS, daughter Gail Mabo said that for a long time, Australia had taken “baby steps” when it comes to acknowledging its First Nations people.

"Now is the time to lengthen our stride, to make things move," she said.

"For me, the hope is that we’ll have a better Australia come the time of my grandchildren and great-grandchildren.”

* For privacy reasons, these are not their real names.

Keen to read more from Rebecca Davis? You can find her articles here, or follow her on  Instagram.

Feature Image: Children from the remote Indigenous community of Laramba in the Northern Territory, a region affected by undrinkable tap water. Credit: Marianna Massey/Corbis via Getty Images/Mamamia.