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Ear disease is ravaging the lives of a generation of Aboriginal children and destroying their chances of an education, but Australia has decided that it doesn’t want to know.

The disease strikes babies just a few weeks old. Infection and fluid builds up behind the tiny infant’s delicate eardrum, causing the membrane to bulge and eventually burst.

For these babies, it should be a period of hearing and learning, a critical time to acquire language. Instead, their world becomes deadened. Voices become indistinct, and sounds become dulled, sometimes forever.

The medical term for the condition is ‘otitis media’, which simply means middle-ear infection. But the severe form that is devastating Aboriginal communities across Australia is causing permanent hearing impairment and lifelong disadvantage for many of those it infects.

Sydney audiologist, Samantha Harkus, says that non-indigenous babies can also get infected ears, but usually in a much milder form. “It’s something that your kids get from time to time which hurts quite a lot and then it goes away,” she explained. “But in the Aboriginal community it’s not like that at all. It’s a recurrent or chronic problem that has much bigger ramifications for many parts of their lives.”

The reasons why chronic otitis media affects Aboriginal people more than the general Australian population are not fully understood. Some researchers speculate that the disease may have arisen when Aboriginal people transitioned from a nomadic lifestyle to living in settlements.

It is believed that overcrowded housing, poor access to medical care, poor nutrition and exposure to tobacco smoke are contributing factors. Infants are more likely to contract ear disease if they are not breastfed.

“They’ve been struck right from day one!” exclaims ear, nose and throat surgeon, Associate Professor Kelvin Kong. “The kids come into my office where they’ve been in trouble at school, they’ve been the naughty ones. They’ve been hanging out with the wrong people. They’re not paying attention in class, when in actual fact, they just don’t hear.”

Kong understands the challenges that Indigenous people face in Australia. He’s the only Indigenous Australian ever to become a qualified surgeon, though he likes to point out that traditional Aboriginal ‘Nunkari’ healers performed surgery in ancient times.

Based in the city of Newcastle, Kong travels to Aboriginal communities around New South Wales, treating children who have chronic otitis media. If the number of burst or perforated eardrums rises above four percent of a population, then it is classified as a “massive public health problem” requiring “urgent attention”, according to World Health Organisation guidelines. What Kong has encountered in Australia is far worse.

“In our Aboriginal population that rate is over 60 percent,” he said. “In some of the smaller communities that I visit, you’re talking about 85, 95 percent of people with perforated eardrums.”

It should be a simple, treatable disease, but for Indigenous people ear infections routinely continue through adolescence and into adulthood. Often there is permanent damage done to the structure of the ear. The effects can keep cascading until ear disease ends up destroying their lives.

“Now you can’t tell me that with the hearing loss that it doesn’t lead to a lot of the troubles that they’ve been getting in,” said Kong, “and it leads to the problems that the media think is the problem, that is alcohol and substance abuse.

“Alcohol and substance abuse are purely symptoms of the underlying social fabric that is not being developed properly. So a lot of these diseases that we’re talking about are actually diseases of social determination.”

Poor school grades caused by poor hearing can lead to unemployment, poverty and often an encounter with the criminal justice system. The number of Aboriginal people with hearing impairment who end up in prison is staggering.

There have only been three recent studies into hearing loss amongst Indigenous prisoners in Australian jails. A 2006 study in the State of Victoria found that 78 percent of Indigenous prisoners aged 17-20 years had hearing so poor it corresponded with the bottom 10 percent in society. An unpublished 2010 survey by an audiologist at Bandyup Women’s Prison in Perth revealed that 46 percent of Indigenous inmates had significant hearing loss.

In 2012, the acting superintendent of Darwin prison instigated a study of Northern Territory jails, which found an astonishing 94 percent of Aboriginal inmates suffered significant hearing loss. The report attributed this hearing loss to ear disease the prisoners had contracted as children.

Once imprisoned, Aboriginal inmates with hearing loss feel greater hardship and isolation than other prisoners. Many have difficulty hearing the instructions of correctional officers, the Darwin study found. Australia imprisons Aboriginal and Torres Strait Islander people at a rate 15 times the general population, yet the country has not fully investigated the reasons why.

Incredibly, most Australian states have not surveyed the extent of hearing loss amongst the Indigenous inmates in their custody. New South Wales holds the most Indigenous prisoners but doesn’t keep reliable statistics on the extent of hearing loss. The question remains, why not?

“I can’t answer that,” said New South Wales Member of Parliament, Linda Burney. “You could assume it would be very similar, in particular to the Victorian statistics.”

Burney was the first Indigenous person to become a Member of the State Parliament in New South Wales, and is now Deputy Leader of the Opposition. For twenty years she has lobbied for more action to help Indigenous people suffering the effects of otitis media.

“Obviously, the impact of it on the adult population is not something being discussed and probably not being dealt with,” she said. “In that context, the profile of it needs to be raised, particularly the implications for people as they go into adult life.”

Just how many Aboriginal people in Australia are suffering hearing loss as a result of otitis media is not known. In 2005, Darwin paediatrician Peter Morris recommended that a standardised national survey be done, but none has happened.

Morris conducted his own study of Aboriginal children across the Northern Territory, and discovered that severe otitis media was rife. He found that only 20% of the children had normal hearing. The rest required medical intervention or hearing aids. Puss was seen oozing from the ruptured eardrums of babies as young as 19 days of age.

“The first thing that needs to happen is that there be a comprehensive understanding of how deep the problem is,” said Burney. “If the statistics in the Northern Territory are replicated in other states, which we don’t know but would assume that they are, then we do have a crisis in relation to hearing for Aboriginal people.

“The issue is, where does it fit into some of the more life-threatening health issues that Aboriginal people experience? Outrageous rates compared to the rest of the population. And maybe it’s about priority. If heart disease and cancer and diabetes, which are life-threatening, are soaking up the space and the money, then you can begin to understand that.”

Some health professionals in the field are already working very hard to improve the hearing of Indigenous children. In the southern arid region of the Northern Territory, Harkus has taken her audiology clinic on the road as part of an outreach program run by Australian Hearing. She visits the remote communities of Lytentye Apurte, Aputula and Titjikala, on the edge of the Simpson Desert, to bring electronic hearing aids to children and eligible adults.

“They want to find out about amplification to make it easier for them to hear,” she said. “It’s around helping people to hear better with the hearing loss that they have.”

Some of the children are unable to have hearing aids fitted due to the fluid discharging from their infected ears. Australian Hearing’s solution is to fit electric transducers to the baseball caps the children wear. The ‘hearing hats’, as they’ve become known, send the amplified sound through the wearer’s skull bone. It’s a bit like that old thing where you bang a tuning fork against the table and place it against your head,” said Harkus. “As far as we can tell, we’re the only place in the world that does that on such a large scale. They work really well.”

It’s not just remote areas that have a problem otitis media. Two thousand kilometres away in Sydney, the city of over four million people has little awareness of the otitis media problem in its midst.

“Western Sydney has the highest Aboriginal population with incredible amounts of ear disease out there,” said Kong. “We need to get the research papers done in Western Sydney so that we can see that it’s a similar problem, to make it more available, to make sure more people get involved in there.”

The problem is exacerbated by the reluctance of many Indigenous people to attend hospitals. In Aboriginal culture there’s a belief that if you go into hospital you never come out. With little in the way of Aboriginal-friendly decorations or signage, and few Indigenous staff in attendance, the hospital system can appear intimidating, and become off-limits to Indigenous people.

“Why if I’m non-Aboriginal do I have access and ability to utilise all these resources, whereas if I’m of Aboriginal or Torres Strait Islander, I don’t,” Kong questions. “Why is there that dichotomy?

“We may as well divide Australia into two and put all terrible disease and Aboriginal people and poverty onto one side and all the affluent on the other, because there’s such a distinction there, there shouldn’t be that distinction.”

The John Hunter Hospital in Newcastle had been experiencing low Indigenous attendance rates at its outpatient clinics. Kong set out to show how things could be improved, and he found a solution.

As a trial, he moved one of the clinics away from the hospital grounds, and is now holding it at the community-controlled Aboriginal Medical Centre. The move resulted in a dramatic surge in attendance

“They now have a clinic which is run by the hospital, so it’s still a hospital clinic, but it’s run in the community,” Kong said. “Now, the attendance rate is 98%. We get inundated with too many patients who actually get there now than what there are places.”

Despite pockets of improvement over the past decade, Kong feels that little progress has been made to stop the scourge of otitis media. He’s calling for a centre for Indigenous ear excellence to be established to bring together the best minds in research, clinical practice and education, with the aim of eradicating ear disease from the Indigenous population.

“I think that if you can eliminate the factors you can deal with, such as ear disease, and make that a bit more of a level playing field, then there’s no reason why we can’t have an Aboriginal prime minister,” he said.

Kong wants to raise the profile of Indigenous ear disease with the Australian public, and put it at the centre of every politician’s mind. However, with government still unaware or unwilling to investigate the social ramifications and extent of otitis media, he still has a long way to go. So far, Australia is not listening.