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26 

May 

2016

 

 AC/DC singer Brian Johnson discusses his

hearing loss 

Johnson laughed when he recalled Dr. Chang looking him in the

eye "with that horrible look doctors have when they know

something bad's coming." That's when Johnson learned he wouldnot regain his hearing. 

New infant hearing lab

Researchers at the Bionics Institute in Melbourne are trying to find

out why One in three children with significant hearing loss who

receive a cochlear implant or hearing aids has poor speech

understanding and delayed language development.

I have hearing loss but I am also affected

by Meniere’s Disease

 “One of the more frightening symptoms of inner ear dysfunction

are drop attacks. I have had three drop attacks. Two attacks

caused my head to be violently thrust to the side as if someone

had hit my head with a baseball bat and vanished. On both

occasions I was lucky to lunge onto a countertop or bed and avoid

injury.”

We acknowledge the traditional owners of country throughout Australia, and their continuing connection to land, sea and

ommunity. We pay our respect to them and their cultures, and to elders both past and present. We acknowledge the

hallenge that faces Indigenous leaders and families to overcome the unacceptably high levels of ear health issues among first

Australians.

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 Your stories matter!  Break the Sound Barrier!

The Break the Sound Barrier campaign is gaining momentum. This week it’s turned its

attention to asking our community – people who are Deaf, have hearing loss, or a chronic

ear condition – to share their stories and experiences. Everyone has a different story,different challenges, different concerns. What we all share is a desire to reach our

potential.

The more we share these stories and harness the energy of people power, the more we

can show why Breaking the Sound Barrier and making hearing health and well-being a

national priority is so important to millions of Australians. Perhaps one day we’ll have a

million stories! Here’s some of the stories people have submitted so far.

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People can easily submit their stories to the Break the Sound Barrier campaign page. You

 just need to visit http://breakthesoundbarrier.org.au/your-stories/ 

 Add your words and a photograph if you can and click the yellow button to send.

If you’d prefer to add a video instead, that’s great. There are instructions on how – it’s

very easy.

 Your story can be as long or short as you want to make it – but it’s an opportunity to tell us

and our decisions makers what matters to you.

Don’t forget to share the story and the campaign with friends, family and colleagues as

well. Remind them to sign up as a supporter. One in six Australians has a hearing health

issue. We need to reach the five in six who don’t as well as a call to action from our entire

 Australian community.

Hearing health and well being in national media spotlight

 ABC TV interviewed Deafness Forum chair David Brady about the Break The Sound Barriercampaign, which aims to make hearing health & well-being a National Priority in Australia.

https://www.youtube.com/watch?v=Bq-acoLmzCw&feature=youtu.be 

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Brian Johnson talks hearing loss: 'I've had apretty good run'By Kory Grow

 AC/DC singer Brian Johnson said he had "a pretty good run" with AC/DC in a new interview, in

which he also discussed his hearing loss. Daniel Pockett/WireImage/Getty

Brian Johnson opened up about the hearing loss that forced him off the road with AC/DC

this year, and how he talked about it with the long-running group's Angus Young and Cliff

Williams, in a new interview on Sirius XM.

"It's like a young sports player getting an injury," he told In the Driver's Seat host Doron

Levin. "I feel sorry for [athletes], being 24, 25 and they have an injury and it ends their

career. And it's an awful thing. But I'm lucky. I'm 68. ... And I've had a pretty good run.

I've been in one of best bands in the world."

The singer – who is also a car enthusiast – also detailed the time he first noticed his

hearing loss, at the racetrack Watkins Glen International in New York State. At a race about

eight years ago, he forgot to put earplugs in and five minutes in, he felt "a little pop" in his

ear. "I was like, what the heck was that?" he said.

"But it was fine. All that happened was I had suffered tinnitus for about six or seven

months. But it cleared up and then I was fine again.

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He did an AC/DC tour after that, but he said that "onstage you don't have any defense"

against what he described as "that industrial noise." "You're in a rock & roll band," he said.

"What the heck do you expect?"

Johnson also explained how he had been working with a doctor on his hearing leading up

to his departure from theRock or Bust

world tour. The trouble began at the band'sWinnipeg gig on September 17th, 2015. AC/DC played outside during a rainstorm in the

cold, and both Johnson and Young had caught fevers. "We were dripping wet, soaking wet,

absolutely freezing," the singer said. Nevertheless, they got on what he remembers as a

two-and-a-half-hour flight to Vancouver right after the show. "Unfortunately the fluids

went up into my sinuses and around my ear," he recalled.

They carried on with gigs in San Francisco and Los Angeles, and by the time they'd made it

back to Australia for a break Johnson realized he ear still hadn't "popped." He continued

with the Australian leg of the tour and went to see a Sydney-based specialist he identifiedas Dr. Chang, whom he met with nine times before Christmas of last year.

"I was getting worried because my right ear is my good ear," Johnson said. "My left ear is

 just about totally deaf. And when we got there, that's when Dr. Chang found out that the

fluids had crystalized and had been eating away at my ear. So my good ear, I lost – I don't

know what percentage but it was enough to make things very difficult. So they worked on

me."

The singer had tubes in his arm, and he was being given liquids and steroids as they

attempted to break down the crystals. Johnson laughed when he recalled Dr. Chang

looking him in the eye "with that horrible look doctors have when they know something

bad's coming." That's when Johnson learned he would not regain his hearing. He

nevertheless performed another run of U.S. shows when his doctor said he was killing his

years.

"The boys saw the charts," he said. "I'd been getting checked regularly. And they saw

there was a massive dip and if I'd have kept on going, there was a possibility I would neverhear again. Angus and Cliff just said, 'Johnno, you've got to think of your health.' And

everybody else said, 'Brian, your health comes first. You've done a whole year on the road.

 You've done everything. We want to finish.' And that's what they did. It's simple. What

people don't understand is it is what it is."

From Rolling Stone http://www.rollingstone.com/music/news/hear-brian-johnson-talk-

hearing-loss-ive-had-a-pretty-good-run-20160520 

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Plans for new infant hearing lab at BionicsInstitute 

One in three children with significant hearing loss who receive a cochlear implants or

hearing aids has poor speech understanding and delayed language development.

Researchers at the Bionics Institute in Melbourne are trying to find out why and to takeaction to help every child to develop good language.

Early access to sound is crucial for the development of the brain networks that are involved

in language. Even with early provision of hearing aids and cochlear implants (bionic ears),

language development can vary greatly from child to child.

Professor Colette McKay plans to investigate

how the hearing brain develops in hearing

impaired children using a child-friendly

technique called functional near infrared

spectroscopy (fNIRS).

The fNIRS technology shows how the brain

responds to hearing through the use of light

sources and detectors which are placed in a

cap on the baby’s head. Professor McKay will

then be able to see how infants’ brains areresponding to their hearing device and tailor it

to their individual needs.

 “The earlier deaf children get access to

hearing, the better the outcome they will have

with language development'' said Prof McKay.

The goal of the Bionics Institute is to help each individual child to reach their full potential

by first understanding the troublesome variability in language outcomes and then applyingthis knowledge to give each child early access to hearing and language development.

To establish a dedicated infant hearing laboratory for this research, Colette needs help to

buy specialised brain imaging equipment. The gift of hearing is one of the most profound

gifts a child can receive.

 Visit www.bionicsinstitute.org

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Photographed at the Audiology Australia annual conference this week , EmmaScanlan and Deafness Forum chair David Brady. Emma was presented with an award for

excellence in service to a standing ovation. Emma is a senior Audiologist and has worked

in the paediatric and adult areas for many years. She has managed policy and practice

for people with severe and profound hearing loss, have poor communication ability or have

other impairments in addition to hearing loss.

Emma has a strong interest in ensuring that appropriate services are available to all people

who may require them. Her main areas of interest have been in improving communication

outcomes for all hearing impaired and Deaf people and working in remote Indigenouscommunities.

It was her expertise and passion during her time as a director that ensured that Deafness

Forum of Australia remained aware of its responsibility to advocate for First Nation

 Australians.

David Brady with Audiology Australia chair/president Prof Louise Hickson and chief

executive Tony Coles.

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I have hearing loss but I am also affected by a balance dysfunction,

caused by Meniere’s Disease.

Beatrice Tarnawski is a committee member of Whirled Foundation, formerly Meniere’s

 Australia. She writes:

Like many who suffer from balance dysfunction, I tend to look normal, I don't walk with a

cane and I'm not in a wheelchair, but you won't catch me walking in 4-inch heels or skiing

a slope or driving a car. These days, the simple act of descending stairs, walking on an

escalator, or even a dropped pen can cause a challenge which requires razor-sharp focus.

There is currently no aid to combat the balance loss that I have to work around. It was 13

years ago I first experienced balance loss and tinnitus in my ear. It wasn't until 2007, after

a stressful year, I was diagnosed with Meniere's Disease. Just after Christmas day I had

my first Meniere’s attack, the beginning of an eight year rollercoaster of vertigo attacks,

tinnitus, brain fog, migraine, nystagmus and frightening drop attacks.

The first few years of the diagnosis, it was manageable, I could to work, wear heels, drive

my car to the Gold Coast, socialise with friends and even fly interstate unaccompanied.

However, in August 2011 another incident occurred. I experienced a vertigo attack while

driving.

Luckily it happened at a quiet intersection, I put on the hazard lights and handbrake and

waited it out. Also, I had a passenger with me to drive me home when the attack had

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passed. I was shaken but did not want Meniere’s to beat me. After a few days of not

driving, I got back in the saddle and attempted to drive to an appointment.

Near the scene of my vertigo attack a panic came over me, and by the time I reached the

dual roundabouts, my heart was pounding. After that incident I stopped driving for 3.5

years and only started again last year, and only to the shops – I am glad to have some

independence back.

 Any of the little things you take for granted are gone. Life with a balance dysfunction is a

lesson in fear and loss. The world becomes a scary, wobbly place. Furniture and objects

are bumped into, objects are regularly dropped. You can't experience the inner peace of

 just sitting still, because on the inside you cannot sit still.

 You can probably guess what hearing

health means to me and others that sufferfrom chronic ear disorders like Meniere’s

Disease. It is not so much the hearing

loss as the constant dizziness that steals

your life away. How can dizziness be a

hearing health concern? The primary

purpose of the ear is spatial orientation.

The ears are connected to the eyes by the

vestibular ocular reflex so we can exist and

move in a three-dimensional world. Thatis the primary purpose of the middle ear.

Perhaps this is why middle ear disorders

have fallen through the cracks in Australia.

How can we assist people with a balance dysfunction when they only recognise one

function of a sensory organ. Until it has greater awareness, Australians with chronic ear

disorders will go unheard and unsupported.

One of the more frightening symptoms of inner ear dysfunction are drop attacks, alsoknown as otolithic crisis. Again, I am not a person of science so I have had to learn all this

myself. I have had three drop attacks. Two attacks caused my head to be violently thrust

to the side as if someone had hit my head with a baseball bat and vanished. On both

occasions I was lucky to lunge onto a countertop or bed and avoid injury. The third attack

was the most frightening, I was in the powder room at home when I turned to the door,

but halfway through unlocking the door, I fell straight down. It came upon me so suddenly

I had no opportunity to break my fall. It didn't feel as though I had fallen but that the

entire room tilted 90° and the room rose up to hit me in the head – the most frightening

experience of my life.

Beatrice Tarnawski: “We have the number, in

terms of those affected, but we do not have

government attention.”  

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Unfortunately, I am not alone in this experience. One American study estimated drop

attacks account for a quarter of falls in older patients. This estimate may be high but,

nevertheless, drop attacks are a serious problem warranting further research. In 2013,

deaths from accidental falls more than doubled in one decade. Questions need to be

asked, but who is asking them?

The Australian Institute of Health and Welfare produced an 800 page report on Australian

health. One would expect hearing loss to be a feature, at least a few paragraphs, but a

keyword search showed almost nothing at all. The nine national health priority areas

received significant mention and discussion – but what about hearing health? We have the

number, in terms of those affected, but we do not have government attention.

Chronic ear disorders are an invisible illness – it is a challenge for people to show what it is

like to live with ear dysfunction. I want to make chronic ear disorder more visible. Please

sign our petition. Over 40,000 Australians with Meniere’s disease need your help. Please

lend your support by calling on the federal government to add urgently needed Meniere’s

disease medications to the PBS.  Together we can alleviate the financial burden of

 Australians suffering from Meniere’s disease and improve their quality of life.

https://www.change.org/p/over-40-000-australians-with-meniere-s-disease-urgently-need-

your-help-please-sign-and-share-this-petition 

We need words to achieve access

The New Zealand Captioning Working Group presented a petition with more than 2,300

signatures asking “That the House of Representatives legislate to ensure accessibility viaclosed captioning for Deaf, Hard of Hearing and other New Zealanders who need it, to

access all broadcast, online and video mediums”.

The petition was presented to Mojo Mathers, Green MP on Global Accessibility Awareness

Day. It highlights the inaccessibility to broadcast media caused by the lack of captioning

which enables access.

 A blaring example of the inaccessibility was the 2015 Rugby World Cup, where many

games that were broadcast on free to air Prime TV (owned by Sky TV) were not captioned.

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This was also the subject of a complaint to the New Zealand Human Rights Commission by

the Captioning Working Group.

Mrs. Louise Carroll, Chairperson of the Captioning Working

Group and Chief Executive of The National Foundation for

the Deaf said in a statement “This is not about just about

access to the Rugby or the latest sporting event attracting

New Zealanders attention, it’s about a large group of New

Zealanders being marginalised as they are not offered

inclusion through access. In a 21st century digital society

inclusion for all New Zealanders really does matter”.

There is no legislation in New Zealand requiring

broadcasters and video on demand providers to provide

captioning.

New Zealand is light-years behind Australia where TV

stations are required to broadcast with captioning on all primary channels between the

hours of 6am and midnight seven days a week. ABCiView in Australia offers captioning. The

United States has had captioning legislation for decades with very strict compliance rules

and exception processes that have been tested. TV catch up services provide captioning

and content previously aired on US television must include captioning when made available

online. The United Kingdom and much of Europe require broadcasters to caption.

BBCiPlayer is considered a world leader in accessibility. In Canada all TV adverts andpromotions must also carry captioning by law.

From Scoop Independent News, http://www.scoop.co.nz/stories/CU1605/S00246/we-need-

words-to-achieve-access.htm 

The Ambling Photographer

Louise Carroll

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Robyn Carter is The Ambling Photographer. Robyn is a talented New Zealand

photographer who is deaf.

https://www.facebook.com/search/top/?q=the%20ambling%20photographer 

Know someone who might like to receive One in

Six?To subscribe, drop us a line to info@deafnessforum.org.au 

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