Raw Transcript
“Hearing Awareness Week 2043 –
What Can We Expect?”
Rottnest Room, Esplanade Hotel
Wednesday, 9 May 2018 at 9.15am
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BARRY MACKINNON: Good morning, ladies and gentlemen. Thanks very much for your attendance. For those of you who don't know, my name is Barry MacKinnon, I'm Chairman of the Deafness Council, and I welcome you all here today.
Right at the outset, I wish to acknowledge the traditional owners and custodians of the land and pay respect to them and their cultures and to their elders both past and present. Today, for your information, really is part of Hearing Awareness Week, although Hearing Awareness Week was changed this year by the Federal Deafness Forum body to 3 March and we were supposed to have a function then. But because of a whole lot of bureaucratic bungling, I suppose, if you want to put it that way, we couldn't do it then. We're having this function today in place of that to recognise Hearing Awareness Week.
I wanted also to acknowledge all of the people today who have helped put today together, but particularly Julie Edmonds ‑ please stand up, Julie. Put your hands together, please, for Julie. Today wouldn't have happened without Julie's time and effort. Also, over the road you'll see if you've come in today we've got the Australian Hearing bus. Kirsten White, from Australian Hearing, is on that bus. If you have time, go over and say hello to Kirsten and get your hearing checked for free while you're here. Go over there and do so.
If you want, during the morning, we'll be getting Michelle ‑ stand up, Michelle. No, I said stand up. Michelle is our photographer and she'll be running around taking photos and we'll be putting it on the website. If you don't want your photo to go on the website, say, "With all due respect, I'd rather not have my photo taken." If you like the publicity and glare and showing off on the website, Michelle will be running around today taking that. Thanks for your help, Michelle. We appreciate it very much.
We've split today into two segments, presentations and then we're going to have our Q and A session a bit later. We decided this year, the Deafness Council, to have a new award. We've got the Harry Blackmore Award, which we'll present later. We've done that regularly now for many, many years, which I'll talk about later. But we wanted to make an award not every year we will do it, but we'll do it from time to time where people have made a significant contribution to the field where we are involved in looking after deaf and hard of hearing people and the first of those people we want to recognise is Harvey Coates. Please come up, if you wouldn't mind, Harvey. Also, to speak in support of this award we've got Anne Bourke and Paul Higginbotham -if you could come up and take a seat here. I've been told in no uncertain terms by Paul that ladies go first, Anne, so you're the first to come up here. Then Paul will follow up in support of your comments and also make the presentation. So please welcome all of these distinguished people here today. Thank you. (Applause).
ANNE BOURKE: Good morning, everybody. I'm delighted to be here this morning to acknowledge the amazing work and life of our friend and colleague Professor Harvey Coates. My name is Anne Bourke and I'm a retired Executive Director of Nursing at Princess Margaret Hospital and I've known Harvey for approximately 30 years in our professional lives. And what a career he has had, a very busy ear, nose and throat surgeon, operated on hundreds, more likely thousands, of tonsils, adenoids and eardrums and that's just one aspect of his surgery work. He's been a very busy researcher with about 70, probably more, publications, including book chapters around ear, nose and throat work. He's been a very busy teacher training researchers to do really good scientifically valid research and he's trained doctors to become ENT surgeons in all aspects of the specialty of ear, nose and throat. And many of our current ENT surgeons have come under Harvey's tutelage at some point in their training.
He's also been a very busy student and Harvey completed his doctorate last year ‑ that's a real doctorate, so he's a doctor doctor ‑ and he's also been a very busy philanthropist and he's a lover of the arts. And on top of that he's a really nice gentleman.
Harvey has done so much for the children of all ages. He introduced newborn hearing screening, programs in maternity hospitals throughout WA, and it's now mandated that all newborns have their hearing screening done within five days or as soon as possible after their birth. Early screening and detection has had a major effect on the outcomes of children with hearing loss.
Harvey has worked tirelessly for over 30 years with rural and remote indigenous children, regularly holding clinics in the bush so chronic ear disease can be managed closer to home. He was awarded the inaugural Aboriginal and Torres Strait Islander Health Medal by the Royal Australasian Council of Surgeons recently for his contribution to closing the indigenous gap, health gap. This prestigious award is a tribute to his commitment to our Aboriginal children of the State.
This award, of course, joins many other awards and medals that Harvey has accumulated over his working life, including an Officer of the Order of Australia, which recognises the immense difference that Harvey has made to children's hearing and to their lives.
Harvey has been an integral part of the WA ear, nose and Throat landscape for many decades and has influenced many people both professionally and personally. His work continues with the Earbus Foundation and his legacy will continue on. I am thrilled that Harvey is being recognised today and I wish him all the best. Thank you. (Applause)
PAUL HIGGINBOTHAM: That just reminded me, about three months ago I met Dr Anne Aly, the federal member for Cowan, and you may recall she's the first Muslim member of the Federal Parliament and she's an expert on counter‑terrorism. Anyway, we were talking about the work we do in regional Australia and she clearly understood what I was talking about and she mentioned that her son at two years of age had been on the verge of being diagnosed as having something like autism because he had no language. It turned out he needed grommets and Harvey put them in and she said to me, "Do you think I should write to him?" I said, "Look, I know that Harvey's long career, he still receives letters 30 years after from adults saying how he changed their lives" and I said, "I am sure he would be delighted to hear from you." I think she wrote to him the moment I left the office because the next thing Harvey said, "I got this really nice letter from Dr Anne Aly." I don't know how many ENT surgeons get those letters, but I suspect not many.
I first met Harvey the last Sunday morning in August 1997. It was the launch of Hearing Awareness Week and I'd just been appointed as the head of what was then the Speech and Hearing Centre for deaf children and Harvey said, "Look, you must come down to the rooms and have lunch." It was the start of one of the most important professional mentorships because you can be mentored and taught by Harvey and you don't feel like you've been taught anything. You've learnt something, but you don't necessarily feel you've been taught. He has a lovely gentle way of imparting knowledge. It's the gentleness, the compassion, the wonderful caring that makes those letters come in 30 or more years later.
I picked Harvey up at Kalgoorlie airport, I don't know, about three and a half years ago and we were driving to Laverton, I think, about a three‑hour drive. He talked about ears the entire way. I've got passion and commitment. I could not talk non‑stop for about three hours about ears. Mine were hurting at the end of it, you know.
So last year I had occasion to write a letter on Harvey's behalf and this is a career in the order of Fred Hollows, to be honest, and in that letter I said, "I can't think of anyone bar Professor Graeme Clarke who has had a greater impact on the hearing wellness of Australian people than Harvey Coates." That's the truth. It's been an extraordinary career and I've been privileged to be on the sidelines and to have learned from him and to have caught a little bit of his passion for Aboriginal kids. I've sat in rooms next to him while he's been treating them. It's remarkable to watch. It's remarkable. I've seen a lot of ENT surgeons up very close and very few can make kids feel relaxed and valued in the way that Harvey does. It's quite special to watch.
I had the great fortune three or four years ago to ‑ Harvey's career was celebrated amongst his colleagues at Bunker Bay and I had the great honour to speak that day and it was lovely to see the respect in which he's held. The achievements that Anne has referred to of course are, yes, the achievements of a very substantial career.
But there's something else there. It's about Harvey's innate decency, his compassion, the fact that at 93 years of age he's still ‑ thanks for laughing, Barry, I think people believed it for a moment ‑ that Harvey is still dreaming about the future. It's remarkable. He's still innovative, creative, imaginative, about what the future might look like. If we're here to hear the future, then Harvey is the man.
So from my point of view I consider that Earbus Foundation would probably not have come into being without Harvey's support. In my own professional career when it was buffeted in the last part of 2012, the start of 2013, my own professional reputation was at risk. Harvey was at my side in an instant with a moral certainty and courage which reminds us that sometimes in life you just have to plant your feet, stand your ground, and say this shall not stand and I, my family, owe you that for a long time, Harvey.
Can I ask you to rise and salute one of the most remarkable careers in Australian medicine, Professor Harvey Coates. (Applause).
DR HARVEY COATES: Thank you, Paul and Barry, colleagues, parents and children. I would first like to acknowledge the traditional owners of the land upon which we stand, the Noongar people, and their leaders past and present.
It's been a privilege to look after children. Nelson Mandela said you engage the soul of a country by the way in which they treat their children. So I've been fortunate to look after children via Princess Margaret Hospital for 38 years, Telethon Kids Institute, Earbus Foundation, Kimberley Aboriginal Medical Service, the Country Health Service, a number of other groups throughout Western Australia. It's been a privilege. So many inspirational people have helped and guided my life, from researchers like Fiona Stanley, advocates like Barry, Paul and the late Terry Crommelin, clinicians from Mayo Clinic days through to PMH right through to now, dedicated paramedicals like Lara and Dee, Irene, Diane Pete and many others, I give them my thanks.
So what have been the highlights? I think Paul mentioned them: the long but slow improvement in Aboriginal ear health starting the first large‑scale newborn hearing screening program in Australia at PMH in the year 2000. So that's 18 years it's been going several weeks ago; creating with Rodney Williams Foundation and the Health Department and UWA a chair in otolaryngology head and neck surgery which is now vacant and the exciting and most successful research in otitis media with Debra Lehmann, Peter Richmond, Ruth Thornton, on discovering how bacteria fight otitis media and cause otitis media and how the body fights against this and how the bacteria then become embodied within a biofilm or in a mucosa in the lining of the middle ear or in the glue itself. That with my colleagues has been the most exciting research and of course looking after children.
The stories ‑ it's funny, you'd think the most important thing would be all the laryngeal reconstructions and those major operations. It's not. It's been the children who are not saying anything at age 3. You put grommets in and the next time you see them nine months later they can't stop talking, or the two children that Peter Shavel sent who had never walked, they had cerebral policy, they had chronic glue ear and walked within 48 hours and the parents thought it was a miracle because we gave them back their balance.
So retirement from private practice looms this month, but there are still children in remote areas of Western Australia to treat, research to do and writing to continue and advocacy both nationally and with World Health Organization to be involved in. Thank you all for your help in this journey, which is not finished but merely has taken a new direction. Thank you (applause).
BARRY MACKINNON: Thanks, Harvey. I was remiss earlier, if I could just make a comment. I meant to say that Anne was previously Director of Nursing at PMH, so she's made a significant contribution of course to the health care of young people in Western Australia and, more importantly, my wife reminded me because my wife used to be a nurse at PMH that Anne is now President of the Children's Hospital alumni that they've just established. Congratulations on your career and what you've continued to do. Paul, as he said, used to be the principal at Telethon Speech and Hearing Centre from 1998 to 2012, now of course the Earbus Foundation CEO and a tragic, tragic Eagle. So anybody who's a Docker, he's the bloke to get into as you walk out the door.
In terms of Harvey, I was reminded in listening to Harvey, and for the young people here today when you look back over the years of Harvey's contribution and others, where we've come from is quite amazing. The students at Shenton College wouldn't have been at Shenton College 20 years ago. There wouldn't have been that integrated education at all. That's a major step forward. We have captions on telly, we never used to have that. We wouldn't have had real‑time reporting.
As Harvey said, we need to be reminded, the first State in Australia with newborn screening was Western Australia, largely to do with the work Harvey and others did at that time. So we've made a lot of progress. We still have a long way to go. But Harvey has reminded us of the sorts of achievements we've achieved over that time.
The other recognition we wanted to make today was to the late Terry Crommelin, many people have heard of Terry, who was one of the joint and early founders of the speech and hearing centre and to do that today we wanted Karen Venard, if you could come forward, Karen, to make the presentation and Vicki Sloan, Terry's daughter, to accept that. If you both come forward, I'd appreciate thank. Karen, for those of you who don't know, was the principal at Telethon Speech and Hearing Centre from 76 to 97. She was part of the American invasion to Australia of audiologists to Australia back in those days, if you want to call it that, still involved as chairman of the research foundation a little group that supports the school and the response will be by Vicki. I get a bit emotional when I talk about Karen because many people here, or some people here, like me, our son went to the Telethon speech and hearing centre. We owe our family a great debt to a lady like Karen Venard. Over to you, Karen, that's the trophy you present right there. Thank you. Give her a clap (applause).
KAREN VENARD: It's a pleasure to be here this morning. There are times in history and currently when events and circumstances expedite innovation. In the 1950s and 60s in Australia and around the world there were rubella epidemics producing great numbers of hearing impaired and handicapped children. There was also a growing interest in alternative educational methods for educating hearing impaired children. In Perth the deaf children's welfare group was formed to provide a forum for parents to express their hopes for their children's future. Terry and Audrey Crommelin entered this situation when they had a hearing‑impaired daughter, Jenny. They were concerned about what schooling was available to them and decided to hire Mary McCudden to tutor Jenny in their home. Other children were added by the McCuddens with the help of Greta Atkinson, who worked with the Commonwealth Acoustic Laboratory. The financial support provided by Terry was of crucial importance during the early years at the school. It supported the recruitment of overseas teachers as there were none who were actually educated here. They had to do a course from Melbourne to be able to work here as a teacher of the deaf or they had to go overseas to get their credentials.
Now, Terry gave salary subsidies, he also gave generously to help teachers further their studies and so benefit the centre by their added expertise. During the periods of financial crisis the centre would always depend upon Terri's advice and timely intervention. This was never more apparent than during the 1978 crisis when Terri's efforts contributed markedly to the reduction and management of major debts. Being an independent school needs a lot of financial input and Terry was paramount in that. Terry served on the board from the centre's inception and for a number of years its meetings were held in business premises in Leederville. As a school grew in numbers, the additional needs of children were seen to by Audrey Crommelin. She brought in her friends to help. They formed the ladies auxiliary and helped with transporting the children, making lunches, fundraising and doing a myriad of wonderful, helpful things. Their help was generous and greatly appreciated. In recognition of his long and committed service to the centre, Terry was awarded life membership in 1979 and in 1983 he opened the resource centre, which was named after him. Terry, Bill Wiley, Stan Perron and Lotterywest were donors to the capital campaign that commenced with the Crommelin Family Early Intervention Centre in 2000. Terry also donated one of the first newborn hearing screening machines to allow for hospital‑based screening of neonates. This works right in with Harvey's statement about the start here. He also introduced Paul Higginbotham to Jack Bendat, who subsequently donated a million dollars to the building bearing his name. Terry managed, arranged and mediated the meetings and when the amount fell short of the target, he offered to pay the balance so the project could proceed. This is Terry always coming into the gap and helping out.
In 2001, Audrey and Terry were each awarded the Order of Australia Medal, an OAM, for service to children with hearing disabilities through the establishment of the speech and hearing centre for children. I'm proud to present a lifetime achievement award posthumously to Terry and Audrey Crommelin. Thank you. (Applause).
VICKI SLOAN: Thank you, Karen. Dad would be incredibly honoured to receive this award. He would also be the first to say it was not just he but also my mother, Audrey, and countless others. Dedicated people who shared his vision, teachers, who brought cued speech to WA, business colleagues who donated their time, money and expertise, plus many friends and families of deaf children, and of course my sister, Jenny, who is the inspiration that drove him. (Applause).
BARRY MACKINNON: Thanks very much to Vicki and Karen. The Dr Harry Blackmore award ‑ is Rob Eikelboom here yet? Come up here, mate. And Pam, where are you? Sitting over there, the awardee. Rob was the winner last year, which I'll explain in a moment, and Pam is our awardee this year. Come around this way and we'll help you up. The Dr Harry Blackmore award is something that we've made an award since 1988. Dr Blackmore, which some people hear would know, was a tireless worker for deaf and hard of hearing people. He was heavily involved in the WA Deaf Society for many years. He had I think two brothers who were both ‑ two or three brothers, was it, who were deaf. He wasn't deaf himself, he was a medical doctor, and he was also President of the Deafness Council for many, many years. In fact, he's our only life member after over 40 years of operation. He was an outstanding Australian, outstanding West Australian. The first awardee of that award was a feller called Kevin Campbell, who Geof Parry, here today, would remember. Kevin was managing director of Channel 7 and Channel 7, with our assistance through Lotterywest, was the first station in Australia to broadcast captioned news services, closed captioned news services in Australia, and Kevin was totally instrumental in achieving that. He was first awardee. We've had many more since then.
Last year Rob on my left here was our recipient for his years of dedication to hearing research as well as mentoring, supporting many undergraduate and postgraduate students in the hearing research journey. Pam Davies is our recipient this year and Rob is about to tell you why. Are you going to do that? You read this out, then, Rob. That will do. That's what you present to her right there.
ROB EIKELBOOM: I'll just get my reading glasses.
BARRY MACKINNON: The best laid plans of mice and men.
ROB EIKELBOOM: Sorry, Pam, that's no reflection on you. So thank you very much, Barry, for the opportunity to read this out and to present this to Pam. Pam has been a dedicated and well‑respected teacher of the deaf for over 30 years in Victoria and Western Australia. Pam has for a long time gone over and above and beyond in her role as teacher of the deaf. Her motivation has always been the wellbeing of her students and the young deaf students involved in the Youth Advisory Committee. Pam has coordinated and implemented a number of initiatives at the Youth advisory Committee, developing the independence, self‑esteem and leadership of all members. She has encouraged members to form friendships and she nurtures the individual strengths of each member.
Pam volunteers outside of her role as a teacher. She is an outstanding role model and exemplar for her students and other professionals, from cooking sausages at a community barbecue at deaf events to organising quiz nights to support deaf students' aspirations. For many years she independently ensured that young deaf girls could attend the formal balls at school, liaising with families, organising ball gowns and transporting students to this important event in their lives. She did this generously and with dignity for the student and the families who may not have been able to send their young daughters or sisters to the formal ball.
Pam is generous with her time professionally and personally for students, parents and colleagues. Her compassion and will to see deaf students succeed individually is commendable. Her unselfish personal contribution has seen many young people succeed and reach their goals. Congratulations, Pam. (Applause).
PAM DAVIES: Thank you. Thank you very much.
SPEAKER: A worthy recipient.
PAM DAVIES: Thank you. I always have something to say. Well, it is a great honour to receive the Dr Harry Blackmore Award. Dr Blackmore was a tireless advocate for the improvement of educational opportunities for deaf students and as a teacher of the deaf, I just want to tell you a secret. I have the best job in Australia. Working with deaf children is just a privilege and an honour. Every day, whether you're sitting on the floor in the kindergarten or you're in the high school working with a student who's struggling with their English language, it's just an honour. When they sometimes walk into your room and you have a conversation and you listen and then they walk out and you think this is the best job in Australia.
When I was working with the Youth Advisory Council, the main aim was really to add on to the educational opportunities that young deaf students had and so Kathryn Monaco and Steve Watson established Youth Advisory Council and it was to promote leadership qualities, advocacy skills, and to give them opportunity to plan and conduct events. So somehow the planets aligned and spectacular people were involved.
So from the two who established it, Stewart Carter came along and he planned and conducted a wonderful camp with the foundation. Lynne van Olden and Roz Luce, we worked together as a team on quiz nights and camps. The students were just so motivated to I guess challenge themselves, but also to challenge me. We had completed one quiz night and one camp and I was kind of resting on our laurels. We've done a good job. A year later they said "let's do another quiz night". And so we joined with the Youth Leadership team at Telethon and together the students, dragging me along, planned another quiz night. They went out, they got sponsors and they wrote the questions. And to our great joy, students who perhaps in a meeting a couple of years ago didn't give their opinion were all of a sudden standing up at Telethon on the stage in front of a microphone reading out questions, giving the answers confidently.
I remember Roz Luce and I kind of hi‑fiving each other, feeling so proud of these kids who had really ‑ they were nervous, they had overcome their fears, but that's the great joy of being a teacher of the deaf. You go to assembly and you've been practising with this little year 2 student to do their little speaking part and you know that they're nervous and they're scared and their mum is up there and her heart is going like this and you see them get up at the microphone and they speak confidently and they articulate the words that you've been practising and you just know then it's the best job in Australia.
So I do ‑ I have worked and been mentored by people like Leanne Potter and Steve Watson. I came from Victoria and I barrack for Essendon, I'm sorry, but they didn't hold that against me when I came. But when I first came I'd grown up under signed English and Margaret warden has spent 75 hours with me after hours for a year just upskilling me in Auslan and teaching me what the language of the deaf was really about. So I'm very grateful since I came to Western Australia in 1995 to have been mentored and assisted in my role as a teacher of the deaf.
We are hoping that teachers of the deaf will be able to train in Western Australia. I was in Victoria, so I trained in Victoria. When I trained 100 years ago, in 1975, students from Western Australia were in my course and, sadly, we still don't have a course here, so we are hoping that that is something that we all aim for.
But in conclusion, thank you to all the people who have mentored me and helped me and nominated me. It is a great honour and I do have the best job in Australia. So it's wonderful to be recognised for something that you really enjoy and love. So thank you very much. (Applause).
BARRY MACKINNON: It's really disappointing when we make an award to somebody who's not so enthusiastic about their job, isn't it, really? You can see that these students are blessed to have somebody who's got that enthusiasm and love for their job, so well done, Pam, congratulations and keep up the good work. I'm sure you will, despite the fact that you're an Essendon supporter.
We now have a presentation from the Deaf Arts people. Julie, can you let them know that we're ready for them to rock'n'roll and we'll get under way. So just bear with us for a moment while Carrie brings her crew in. Thank you.
CARRIE BROCK: Good morning, everyone. How are you going? We are WA Deaf Arts, okay? Lovely to meet you all. We're so excited to be here today and we're very sorry that we're running a bit late.
Anyway, Western Australian Deaf Arts began in 2010. We've done nine performances to date. We've persisted with the West Australian foundation for deaf children's workshops, performed at national conferences, performed at the Perth concert hall and today we're performing for you. We're performing two songs today. The songs we're performing speak of basically our plight. We're a small community organisation, we're deaf, hard of hearing and hearing. We've actually for the second time been rendered homeless basically by larger organisations for no really good reason. It shows basically the lack of support by people in power of the little people which is very disappointing, but we believe that we are actually a very strong and worthy team. Oh, that's better, you can hear me better? That's good ‑ strong and worthy team and we can overcome these setbacks by bonding together and persevering.
The first song is "From Little Things Big Things Grow" by Paul Kelly. It speaks of patience, it speaks of the ability to join together and many people in common, you know, get other people in common together and fight oppression and to come out on top, basically, and one really powerful line that I love is basically the last few lines in the song and he sings about this is a story of a man Vincent Lingiari, but this is the story of something much more, how power and privilege cannot move a people, who know where they stand and stand in the law. So it's a really powerful song in that way.
The second song is a bit more upbeat and it's called "This is Me" from the musical movie, the latest movie, The Greatest Showman. The Greatest Showman is about the first circus, so it's sung by the bearded lady. So it's basically about the fact that ‑ not just being "we are freaks", "we are misunderstood", "we are hurt", but "we know there's a place where we belong". So that's what we're talking about now and we really hope that you enjoy our performance.
(Western Australian Deaf Arts perform From little Things Big Things Grow)
# Gather round people, I'll tell you a story
# An eight‑year‑long story of power and pride
# British Lord Vesley and Vincent Lingiari
# Were opposite men on opposite sides
# Vestey was fat with money and muscle
# Beef was his business, broad was his door
# Vincent was lean and spoke very little
# He had no bank balance, hard dirt was his floor
# From little things big things grow
# From little things big things grow
# Gurindji were working for nothing but rations
# Where once they had gathered the wealth of the land
# Daily the pressure got tighter and tighter
# Gurindju decided they must make a stand
# They picked up their swags and started off walking
# At Wattie Creek they sat themselves down
# Now don't sound like much but it sure got tongues talking
# Back at the homestead and then in the town
# From little things big things grow
# From little things big things grow
# Vestey man said, I'll double your wages
# 8 quid a week
# you'll have in your hand
# Vincent said, uh, uh, we're not talking about wages
# We're sitting right here till we get our land
# Vestey man roared and Vestey man thundered
# You don't stand the chance of a cinder in snow
# Vince said if we fall others are rising
# From little things big things grow
# From little things big things grow
# Then Vincent Lingiari boarded an aeroplane
# Landed in Sydney, big city of lights
# And daily he went round softly speaking his story
# To all kinds of men from all walks of life
# And Vincent sat down with big politicians
# This affair they told him, it's a matter of state
# Let us sort it out while your people are hungry
# Vincent said, no thanks, we know how to wait
# From little things big things grow
# From little things big things grow
# Then Vincent Lingiari returned in an aeroplane
# Back to his country once more to sit down
# And he told his people let the stars keep on turning
# We have friends in the south, in the cities and towns
# Eight years went by, eight long years of waiting
# Till one day a tall stranger appeared in the land
# And he came with lawyers and he came with great ceremony
# And through Vincent's fingers poured a handful of sand
# From little things big things grow
# From little things big things grow
# That was the story of Vincent Lingiari
# But this is the story of something much more
# How power and privilege cannot move a people
# Who know where they stand and stand in the law
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow
# From little things big things grow #.
(Applause)
(Western Australian Deaf Arts perform This is Me.
# I'm not a stranger to the dark
# Hide away, they say
# 'cause we don't want your broken parts
# I've learned to be ashamed of all my scars
# Run away, they say
# No‑one will love you as you are
# But I won't let them break me down to dust
# I know that there's a place for us
# For we are glorious
# When the sharpest words wanna cut me down
# I'm gonna send a flood, gonna drown them out
# I am brave, I am bruised
# I am who I'm meant to be, this is me
# Look out 'cause here I come
# And I'm marching on to the beat I drum
# I'm not scared to be seen
# I make no apologies, this is me
# Another round of bullets hits my skin
# Well, fire away 'cause today I won't let the shame sink in
# We are bursting through the barricades
# And reaching for the sun (we are warriors)
# Yeah, that's what we've become
# Won't let them break me down to dust
# I know that there's a place for us
# For we are glorious
# When the sharpest words wanna cut me down
# I'm gonna send a flood, gonna drown them out
# I am brave, I am bruised
# I am who I'm meant to be, this is me
# Look out 'cause here I come
# And I'm marching on to the beat I drum
# I'm not scared to be seen
# I make no apologies, this is me
# Oh, oh, oh
# This is me
# And I know that I deserve your love
# There's nothing I'm not worthy of
# When the sharpest words wanna cut me down
# I'm gonna send a flood, gonna drown them out
# This is brave, this is bruised.
# This is who I'm meant to be, this is me
# Look out 'cause here I come (look out 'cause here I come)
# And I'm marching on to the beat I drum (marching on, marching, marching on)
# I'm not scared to be seen
# I make no apologies, this is me
# I'm going to send the flood, gonna drown them out
# this is me.
(Applause)
BARRY MACKINNON: I congratulate Carrie and all of the WA Deaf Arts people. That was just fantastic. Please put your hands together again. (Applause).
And can I say, Carrie, while you're going off, I think the choice of songs was fantastic, From Big Things Little Things Grow and then This is Me. If anybody has seen The Greatest Showman, by the way, it's a good film and good messages there. Thanks very much indeed.
It's now morning tea time. The morning tea is in the room right next door. We'll reconvene in here in half an hour's time, when we begin our Q and A. Thanks very much for that presentation and all that we've seen to date. Please join us for morning tea next door. Thank you.
(Morning tea break)
BARRY MACKINNON: I'll introduce those people to you, but Gunesh, let me introduce you. He's one of the leading ‑ I can never get this word out ‑ otolaryngologists and head and neck surgeons in Australia. He's an internationally renowned expert for ear and balance disorders as well as for cochlear and hearing implant surgery. His research groups focus on hearing implants, head and neck oncology, skull‑based surgery and tissue engineering. He's currently professor and head of otolaryngology, head of neck surgery at the University of Western Australia. If you get his CV, it goes on for another half an hour. That suffices to let you know he's expert, smart feller, and going to share his thoughts and expertise this morning. Please welcome Gunesh.
PROF. GUNESH RAJAN: Thank you very much, Barry. It's very nice when you are here, I've been here a few times and it's even a greater pleasure to talk to you about my very passion that's hearing. I thank Barry and the Deafness Council and everyone here for attending. It's great to see the Shenton College kids. My son goes to Shenton College, so well done, and parents and children and family members and everyone who is passionate about hearing.
I want to talk to you about my perceptions as an academic surgeon and my job is really to help people get over their hearing loss and deafness, so that's my main driver. It's been a fascinating journey and I would like to share where we are now, where we are in the present, and where I think things are going. It's an exciting journey and hopefully you'll be able to highlight and use the Q and A as well to discuss some very important aspects or the challenges we face if we talk about hearing and deafness.
This is the work of one of my Master’s Students. This is the inner ear, right? This is beautiful. So the inner ear, as you know, has two parts, the cochlea, that's what you're familiar with, the part that hears, and then you have the balance system, so that's why ‑ so the inner ear consists of the hearing and the balance. What's very interesting in evolution, if you go back in time around 3 billion years ago by some miracle some cell dropped into that very warm soup at the time which was gas and a lot of water and the earth wasn't really ‑ there were no continents, there was just water, and in there somehow a cell developed and the first thing it had to deal with was gravity. And out of that need to deal with gravity, the balance grew up. The balance is our first sensory organ, the oldest sensory organ, and the hearing is a by‑product which developed much later in evolution. So it's an interesting phenomenon.
So let's go right into it. Where are we now? This is my main challenge. You might be thinking, "Oh, what's he showing this?" I want you to look at this picture and tell me what you feel when you look at this picture. Everyone has a very strong connection. You see this child has an eye problem, probably couldn't see, and for us this is the most natural thing. Of course we have to restore eyesight to this child, but I can tell you that the emotions and feelings such a picture evokes in you are not the same like they are when I show a child with a hearing loss on one side. There it's not taken for granted that oh, yes, we had to restore their hearing. No, that's not because you've got the other ear, for example, these are the arguments. So one of our major challenges is the awareness about deafness and hearing loss. It's the third most common disability worldwide, but it's a silent disability and that's why it is not as prominent as the eyes.
And you all have heard about ‑ you all know about Helen Keller. She was the first blind and deaf really artist and academic and she quoted this. She said "Not to see means to be deprived of the world, but not to hear means to be deprived of mankind", and this has been for me personally a very, very driving sentence because it's true. I've encountered this in my many trips all over the world, encountered deaf people, children who are hard of hearing. They're the same, they face the same challenges. We are social beings. We want to interact, we want to share our stories, we want to listen, we want to sing. A mother sings to her child. Our whole existence relies on us being able to communicate with our peers, with our brothers, sisters, with our families and society. So I think that's something, that's our job, to make people realise, policy makers realise that hearing is really such a crucial element of our existence.
Just recently in May this year the WHO worked very closely with the deafness officer at WHO and these are the stats. Suck it in, that's what it is. And to add on this, I have to tell you every day just in India and China around 95 babies are born deaf every day. These children could be socialised if they would have access to hearing aids, to cochlear implants. So as I have spoken now two babies were born deaf. So just keep that in mind. If you address policy makers, if you have the opportunity to talk to policy makers and the Government and all those smart people in there, tell them the story, think about these babies. That's just in two countries in south Asia.
The other thing you shouldn't forget, every eight minutes a child dies because of an ear infection. Ear‑related meningitis is the most common cause of meningitis in developing countries and thanks to the research that's been done ‑ you know, Harvey's group with biofilms and the insight into how these infections lead from an ear infection to a meningitis, we can break that cycle and I'll show you how.
The hearing ear ‑ I don't have to spend a lot of time on this, but as famous people say you have to state the obvious. So I'll talk a bit about hearing. So you all know what happens with hearing. We hear a sound wave which is a pressure wave that goes through the ear canal, touches the eardrum, brings the three hearing bones into vibration and then the smallest bone of the middle ear of the human body translates the vibration into the inner ear and then in the inner ear there's these special hair cells that transpose the vibration, the mechanical energy, into electric signals which then go through the hearing nerve into the brain. That's the hearing ear. That's all what it takes. It's a lot what it takes.
Then what happens, and could you click on it ‑ and because the ear is such an important sensory organ, it's housed in the most ‑ in the strongest body of the human and the strongest bone of the human body and this is just to show you ‑ this is the bone encasing the inner ear. If we take away the bone, we see our beautiful inner ear in the hardest bone of the human body for a reason. If the skull breaks, the skull breaks before the bone of the inner ear breaks. It's fascinating.
If we go into the inner ear, into the cochlea, you've all seen this probably, college students have seen that in their anatomy and you see these are the special cells, the organ of Corti, that's where the hair cells are and that's where the vibrations get translated into electric signals that go into the brain through the hearing nerve and as we go ‑ nowadays we can go so close, look at that. We can look at the hair cells themselves. This is not out of space, this is not an alien, this is our hair cells, look at that. Then you can go in closer. You can see the fine hair‑like structure. That's why they're called hair cells. These are the actual hairs which pick up the fine vibrations and translate them into electric signal. But this is just one part of the story because we need a brain that listens to what ‑ we need a brain that can decode the electric signals that come from the hearing ear and that's something where we have realised and we are learning a lot of things nowadays that it's quite complex and it is unbelievably strong and convoluted and interactive with the rest of the brain.
This shows you the area of where the primary hearing centre is and it is connected with all parts of the brain ‑ the front part, the back part, the visual part. All these things are quite important and we know that the brain has a very critical period initially when it comes to hearing where it develops and if you miss the critical period in the early years of life you miss the boat to acquire hearing. That's why it's very important, very important, for early intervention and we'll talk about that.
We also know from cochlear implantation the older the child gets when you implant them, the less effective the cochlear implant will be. Why? Because maturity ‑ other sensory organs come in and take over those areas in the brain. The vision comes in, the sensation of touch comes in, and takes over that area of the brain that was supposed to be responsible for hearing and that's not reversible unfortunately.
What we have also learned is that hearing loss is crucial for our mental health and this is probably the newest area where we have dived into and have realised that actually especially in the wise and senior population hearing has a significant impact on the quality of life. It has an impact on your memory function so elderly people that have a hearing loss have poorer memory, capability of the working memory, and a quicker decline of the memory over time. And again the big epidemic dementia, you hear about this everywhere in the news, in the media, everywhere, but look at that. Treating hearing loss in the elderly actually could reduce or even hold up dementia. That's what the latest research is showing, which is fascinating. We never would have thought about that 10 years ago.
And the other thing talking about mental health, treating hearing loss, especially in the elderly population, prevents depression, which is very common in the elderly population, but not recognised frequently.
So I'll take you ‑ so we know a lot of things and I just wanted to give you an example how science has changed making use of all the knowledge. That's why we learn things, we grow things, try to integrate, put things together, and it started with the knowledge of the anatomy and Alessandro Volta, he was a famous Italian inventor, and he stuck some electric rods into his ears and put some electricity on it and could elicit a hearing sensation. He did a self‑experiment just basically the great grandfather of cochlear implantation.
Then I just want to show you who was involved in this journey. Two smart trench men, the first cat that was implanted, what they did was they used Walter, but instead of just putting a fine rod into the outer ear canal, they put the rod into the hearing nerve and actually could elicit some hearing responses.
Then came the group in Stanford with Blair Simmons in the US and they went further and actually said "Hang on, why don't we try and stimulate the cochlea by putting that thin wire into the cochlea itself?" And that was really the first concept of the cochlear implant. And then Bill House, he's actually an ENT surgeon, or was an ENT surgeon, he came up with the idea of inventing the first with 3M, that company 3M at that time, a single channel device which he tried but failed because it only had single channels and I'll tell you why.
Then learning from House, the couple, the Hoffmire couple, a couple of engineers and physicists in Austria came up with the model of the multi‑channel modern cochlear implant and I think the implant itself would be useless if there would not have been Blake Wilson and Michael Dorman who actually showed up and developed the concept of how the cochlear implant has to work in order that the brain can get the signals right. So that's why again the hearing ear, the listening brain.
And the result was the cochlear implantation. Now let's see whether we can get the video right. This is just to show you what it means. This is a quick short video. If it's not working, we can ‑ it just illustrates the story of now a contemporary German pianist, young pianist, who actually has bilateral cochlear implants. Can you put the volume up? (Video played). It basically tells you the story of this wonderful young woman Anna Schmidt, a famous contemporary pianist, and this was 20 years ago at the beginnings of cochlear implantation and when the parents at the time were very bold to make that decision for her to have the implant at the age of 2 and now what that opened up for her. Now she's a famous contemporary pianist, despite being born deaf, which is an amazing story.
I think it's fine, guys, we'll just move on. We'll just go back to the presentation.
So where are we going? We talked about where we are now. We're in very exciting times. We have learnt a lot of things, we know what we can make use of with these learnt things, with the knowledge we have, and where are we going? This is sort of food for thought for the Q and A and also food for thought for you. I think even though as a surgeon I love doing operations and putting in cochlear implants and helping children and adults, prevention is always better than cure and I don't know whether you remember that slide, 60 to 70% of children born deaf in developing countries, and it was interesting to hear that this was also very common in the 50s and 60s in Australia, are the result of measles, mumps and rubella ‑ 60 to 70%. So that's why we really want to make sure that all these kids, especially the girls, at school age get this vaccination everywhere worldwide because that would with one hit eliminate 60 to 70% of congenital deafness in the developing country.
The other thing is we're talking about deadly ears. We don't want any children to die from an ear infection. It's become very rare thankfully with all the interventions in Australia and in Europe and in the US in certain parts, but it's still very prevalent in Brit nations and in third‑world countries. So again for meningitis there's also a vaccination. That's why it's important to propagate these vaccinations because they're much more effective, much cheaper than any device we tried and used to restore or help these patients.
And I guess this is the crux of the modern times. All the technology around us, all the noise, the exposure, has a significant impact on hearing health overall. Groups here in WA have shown and also all over the world have shown that the increased exposure to noise, we call it noise pollution, has led to a decline of the average hearing thresholds in teenagers, for example. So that's an area where we have to put in prevention, get legislation in to cap sound levels in nightclubs, movie theatres, at concerts ‑ very important. As I'm seeing now patients in their 40s and 50s who were big party goers when they were teenagers and in their 20s and who now have hearing problems at 50, 40 because they never protected their ears. So this is very important.
Kids walking around and teenagers walking around with all the headphones and all these things constantly, that's also part of this noise pollution. So that's where we need to act.
As scientists and researchers we found out that a lot of things can damage the ears and we call that ototoxicity. And in fact, especially as doctors, we have to be aware that there's over 200 different drugs that can cause damage to the ears. So especially as newer drugs are coming out, especially in the cancer space, so a lot of new cancer drugs have the potential to have very bad effects on hearing. So it's a tradeoff. It's life versus hearing of course, but still we need to look after these patients who have successfully survived the cancer but have problems hearing. It means resocialising.
And I think this is one of the probably most exciting areas is with the technology, with the computing power we have nowadays, we can find connections between aspects of health of our living which we were not aware of and that's why the big data which everyone is talking about in other areas is also important in medicine. You can link up various aspects of the body and diseases and what impact it has on hearing. This is very important and something that we need to focus on and build up. We're in the right time at the moment to do that.
And of course you have to realise that there will always be cases you can't help, right? So that's the reality. You can't help everyone.
I think this is one of the areas personally, recognising hearing loss and deafness is the key then for us to do early intervention and one thing and it's great to have one of the giants in the room here Harvey implemented neonatal hearing screening as a visionary decades ago, but this will be crucial in a universal hearing screening will be crucial. But the future will be going further back in time. Why? What will happen is we'll be able to test the hearing of the embryo. The embryo can already hear at 10 weeks of gestation, right? We'll be able to do that. There's groups ‑ there's one in Brazil and there's one in Sweden who have successfully done that.
Not only that, and my dear friend from Matsumoto, he's the pioneer in this. We can even map the genetic defect nowadays of the hearing loss. We can do that in every child that has a hearing loss and we'll be able to do that during pregnancy as well because you know nowadays we can actually take cells in the bloodstream of the mother who have the genetic code of the embryo, so we can tap into that and see and screen for is this baby going to have a hearing loss, right? This will change our mindset. You'll have to then have a different approach on how we deal with this new information.
So how will we manage hearing loss? The key will be ‑ and we know that from neuroscience ‑ we have to intervene early. The earlier the better. The youngest baby I've implanted was four months old. In Europe colleagues have implanted at the age of two months. And you might think are these guys crazy, what are they doing? No, what do the eye surgeons do if a baby is born with a congenital cataract? They operate on this child within the first days of life. Why is that? Because they want to have ‑ the better the input you get from the very start, the better they'll be able to see or hear and the same applies to hearing. There will be a time where we will do neonatal implantations, cochlear implantations ‑ maybe.
There will be disruptive technology. At the moment ‑ I told you the main reason why this 90 to 100 babies born deaf today cannot have cochlear implants is one is access and two are the costs. The costs of a cochlear implant are still very prohibitive. A cochlear implant costs between $20,000 to $30,000 and that's why a large population worldwide cannot access it. So there's new technology and we're quite fortunate to work with the national university on this. Actually we have developed a prototype which is made out of a polymer, so not the traditional wires and silicon housing and all that. It's made out of a polymer which can be 3D printed. This means the costs of this will be below $1,000. And it will give access ‑ through that it will give access to much larger populations. There's a few groups working on different polymers, but you can see the trend. For me it's important that you see where we are going.
Another area where we were quite fortunate at the boundaries here in WA and again together with Harvey's group and our group we set up the first trial in Australia making use of tissue engineering to treat eardrum holes. Millions of people worldwide have perforations, holes in their eardrums, and they suffer from hearing loss and recurrent ear infections, which you know can be deadly. So rather than doing surgery which takes 45 minutes to an hour to fix these eardrums, it needs a general anaesthetic in children, et cetera, there's a concept by Professor Kanemaru in Japan who came up with the idea that you just help the eardrum to heal itself because the eardrum has this phenomenal self‑healing capacity. And what we do is we put a bit of almost like a foam into the hole of the eardrum, put a bit of magic potion on it, which is a growth factor which is in our human body, we just give it in a higher dose, and then let the body heal up the hole on its own. We're just helping the body to heal itself. I'll show you some results and it works really ‑ it is fantastic. So this is a big hole in the left eardrum of a teenager. So this is before the treatment. This is the plug, this foam with the growth factor in place, and this is three months after treatment, a beautifully healed tympanic membrane. So we cannot only do this with the eardrums, we can also do this with the hearing bone. So tissue engineering again will push as a field ‑ will push a lot of changes and restore the hearing mechanisms.
And this is a bit of a gutsy statement, but I think we'll be there. In 20 years from now we'll be able to treat deafness and hearing loss. How? By gene therapy. A good colleague of mine Professor Staker from Kansas City has started a trial one year ago using gene therapy, basically restoring the hair cells we were talking about with genes. He transfects into the inner ear. I can't tell you, but he's really excited about the results he's having so far. So I'll be looking forward to it. That's the way to go.
The other way is using your body's own stem cells. These are cells, very special cells, that can become any cell in the human body. They can become bone, they can become nerves, they can become muscles, but they can also become hair cells. That's the other strategy. You put the stem cells into the inner ear and they'll form the hair cells and restore hearing like that. And in 20 years' time I think we'll be pretty good at that.
So that is exciting, but I think the bigger picture is it needs an approach by all the players, especially if you look at it at a global level, the prevention will be important. We have to increase capacity in these different countries. It should be sustainable what we are doing. We have to create a new paradigm because the new paradigms, new ways of doing it, disruptive ways of doing it bring down the costs, make it affordable and thus accessible for much more people. And it's all about partnerships. These are things we do together, not on your own.
There's a famous African proverb that says if you want to go fast, you can go alone. If you want to go far, you go together. And I can't agree more with that.
And of course technology will just keep on surprising us with new possibilities.
So I think the future is very exciting. I think we are breaking the silence truly and in a couple of decades maybe deafness and hearing loss ‑ it will be treatable and it will be a matter of choice of the individual what they want to do. So thank you again for your attention. (Applause).
BARRY MACKINNON: Thanks, Gunesh. We'll have our panel discussion now. But before we do that, just let me make a couple of brief comments. It's amazing where we think we might be heading in terms of modern technology and what the young people today have. When you think back say 12, 15 years ago, we didn't have a mobile phone that you can text anybody. So texting has been a big boon for deaf and hearing impaired people. Captions on television, we never had that 20 years ago. And computers and the computing power that we have now is just amazing.
In fact, I was talking to my daughter a little while ago, I said it's unbelievable ‑ I call my daughter - Pippa her name is, but I call her fleabag. I said, “It's amazing, Flea, unbelievable this technology, I wonder where we'll be in 25 years.” She said, “You'll be in a nursing home, dad.” I said "No, I won't.” Anyway, to have the panel we have Geof Parry. Let me introduce Geof as he comes forward. He's Perth born and bred. He started on the Collie Mail newspaper, he’s been in the industry for 40 years. He looks 70, not 40. He spent eight years at the ABC and the last 30 years at Channel 7 in Perth, Canberra and Sydney. He's focused mainly on politics, but over the years has been on many overseas assignments for the network, including East Timor, Indonesia, South Africa, Iraq and Afghanistan.
Geof, as you probably see, is currently on long service leave and has just returned from overseas, hence the beard. It won't last when he gets back to work, I can assure you. He has a lovely wife, Marlene, and Geof has always been a supporter of ours, of course. He has a daughter, Caitlin, who's now 31 and she's got a profound hearing loss as well. She went to the Speech and Hearing Centre and now works at Channel 7.
GEOF PARRY: She's a sales executive.
BARRY MACKINNON: There you go. Please welcome Geof Parry. (Applause). The other guests we have are Harvey Coates ‑ come forward, Harvey. You'll be introduced later by Geof and others. We've got our Shenton college students here today, who are getting micced up, which I'll wait until they get micced up. You have to get micced up, Harvey.
Lyn Beazley ‑ come forward, Lyn. Lyn Beazley, as Geof will tell you, was Chief Scientist in Western Australia for many years and was West Australian of the Year as well. Yes, give Lyn a clap (applause). And as Sarah found out earlier, she's a very great opera lover. So if you want to talk opera, Lyn is the girl to talk to.
PROF. LYN BEAZLEY: Even though I'm tone deaf.
BARRY MACKINNON: Spartacus, are you micced up? You can come down. Spartacus Devereux is from Shenton College, and again Geof will introduce these people in a bit more detail later. (Applause). And Lucien Maart. Give Lucien a big clap again as he comes forward. Can I thank the Shenton College people for coming here today. As many would know, it's an outstanding institution and it's wonderful to see these young people here today.
Thanks very much, Geof, over to you. We're just waiting on Harvey.
SPEAKER: Harvey, yes. Harvey was here. He's just getting micced up. Thanks.
GEOF PARRY: I might start anyway because everyone knows Harvey. Can I firstly apologise to the lip readers in the audience for the beard. It's a long‑service leave project of mine and I've still got another four weeks to go. Barry is right, I probably won't be able to wear it back to work.
Thanks, Barry, for the introductions. The title of course for this seminar is Hearing Awareness Week 2043. Barry stole my joke twice because it's a good bet some of us won't be here for it. But those of you who will consider if a lot can happen in five years, just think what can happen in 25. The first cochlear implant surgery was done about 30 years ago. Since then, hundreds of thousands of adults have received them and had their lives changed by them.
But things can also change quickly in just 12 months and even days for that matter. Barry, you'll remember during our seminar for Hearing Awareness Week last year we were talking about the cautious optimism that the National Disability Insurance Scheme underpinned by an increase in the Medicare levy would deliver certainty for people eligible to access it, deaf people eligible to access it, just a few weeks ago that increase in the Medicare levy was abandoned and in last night's federal budget there was hardly a mention of NDIS and the promise just simply a promise it will be funded from general revenue. In fact, WA Treasurer Ben Wyatt, who will get his own shot at glory tomorrow night when he hands down the State Budget, was reported as saying while other states are funded to help NGOs in the disability sector transition to the new scheme, there's no money for Western Australia.
Change is coming, but will it meet the diverse needs and expectations of deaf communities and deaf individuals? Like I said, 25 years is a long way off and helping us look into the future today will you welcome our panel.
Former chief scientist and graduate of Oxford university, 30 years experience in neuroscience, brain injury and part of the negotiating team that secured Australia's role in the square kilometre array professor Lyn Beazley AO. (Applause). Paediatric otolaryngologist, Barry, I practised that, and clinical professor at UWA, former ENT surgeon at Princess Margaret, researching chronic rhino sinusitis, obstructive sleep disorder and newborn hearing screening and indigenous disease, awards are too numerous, appointed an officer of the Order of Australia in 2005, Professor Harvey Coates. (Applause). You've met our next panelist of course, a leading ENT and neck surgeon in Western Australia, one of the leading in his field, internationally renowned expert on ear and balance disorders as well as for cochlear and hearing implant surgery and a pioneer in his field today. Currently head of otolaryngology, Professor Gunesh Rajan (applause). Joining us up here this morning we also have a year 12 student and a strong example of bilingual, bicultural students who use Auslan and spoken English to communicate. He's a year 12 prefect over both Shenton College and the college of deaf education centre and one of the best given names I've heard for a long time, Spartacus Devereux. Last but certainly not least year 11 student who uses English to communicate, he's doing well in his subjects at school but he's drawn international attention for his skill at dance, where he's Excelled both inside and outside his school. Australian ballroom dance champion and represented his country at the world youth championships last year. Representing in Hungary and Romania this year. Welcome, boys. What does the future hold for deaf people and deaf communities? Well, it seems one of the biggest game changers and perhaps one of the biggest disrupters in the past few years has been the cochlear implant. We've got a couple of experts on that up here. Now, the professor Rajan has given us a pretty good example of that technology and that science and the part that it will play, but I would ask him ‑ I had a question which you answered, professor, that was what it will look like in sort of 25 years' time and the new technology being applied. But can I ask you this: if the technology is so good and so effective, why is there resistance to cochlear technology?
PROF. GUNESH RAJAN: Thanks, Geof. It's a very good question. I ask that myself when I go to various places all over the world and I think there are several elements to it. One is the access. Some health economies just can't afford it. The other is lack of knowledge and awareness that there is something like that available, as simple as that. And that's where ‑ and I think there's a big gap between us helping the hearing impaired versus the ones who help the vision impaired. The amount of awareness for vision loss is so much more powerful and bigger that it has really permeated different regions all over the world and that hasn't happened yet with hearing disabilities. I think those are the main reasons I would say, yes.
GEOF PARRY: Professor Coates, have you found in your many years in this field that there are resistances to cochlear implant based on sort of deaf culture and some people who you know that you can help with a cochlear implant but there are people who resist taking up that sort of technology?
DR HARVEY COATES: Absolutely and it is difficult because one doesn't want to ‑ the deaf community has their own community and it's very hard if someone comes around and says "We can actually help you to hear when you've been so used to using other modalities. And it's difficult to say this because some people get upset about it, but in Australia there's a concern that there's a large number of the adult signing deaf who don't work or who are on pensions, 50% they say. Yet we can help by using ‑ by early prevention, by the newborn hearing screening, by cochlear implants. So it is difficult if families say "well, we don't want our child to have a cochlear implant because then we won't be able to communicate with them well". It is difficult and I'm sensitive to the feelings of the community about this, but I also want to help the child. So one is torn between that.
GEOF PARRY: Some of the research I was doing, I kept reading about the sort of big D deaf and little d deaf. It's an area that you work in, gentlemen, that is so diverse. It's as diverse as any other sort of ‑ even though you know the science and the science is so specific, you're dealing with human emotion, which is a very tricky minefield at times. Professor?
PROF. GUNESH RAJAN: Yes, the reality is we have to respect the deaf community, especially Harvey mentioned the dilemma if you have parents coming who are deaf and the child has the opportunity and I try to say see it as ‑ obviously I just want to help. I'm a catalyst, you know? And I say it's like learning a second language, you know what I mean? It's a different kind of language you're learning. So you're making the child more versatile. Even if you can sign, but if you can also have the access to the whole environment, it just opens up much more possibilities for the child and usually the parents are very understanding. That's why they seek the help. It's not that we go chase them. These people come to us for a reason. And I think it's important to understand that because of the nature of the brain, there's only a certain period of time where we can do something at this stage where we are and the plasticity of the brain is phenomenal, that's certainly there, but the hard thing is ‑ I didn't go into that, but hearing loss leads to a change of the whole brain activity and we call it listening effort. So that the longer a person has a hearing loss, the bigger the listening effort is and this listening effort takes up a lot of computing power of the brain. So typically a lot of my patients tell me, "At the end of the day, Prof, I'm just knackered, I'm so tired", because they're using so much of their brain capacity to be able to cope with the hearing. So that listening effort takes up a lot of substance, which they could use for other things ‑ you know, to learn or new skills, et cetera. So there's also from the brain point of view a time where you have to do something and the earlier the better.
GEOF PARRY: Professor, can I bring Professor Beazley, can I bring you in at this point. It's a bit of a related field and it's one that I sort of feel quite strongly about and professor Rajan made the point about the sorts of diseases like measles and rubella and meningitis in particular. My daughter was two years old and contracted meningitis and that was the cause of her profound hearing loss. And these were the days before they had vaccinations for things like measles and mumps and meningitis, which is over the last decade has become quite common, cut the death rate and therefore for the survivors cut some of the after effects. So things like ‑ you're a champion of science, not necessarily a hearing expert but you're a champion of science, a former chief scientist. Why is there so much resistance or why is there a pocket of resistance to things like those vaccinations that can prevent disabilities like hearing loss?
PROF. LYN BEAZLEY: It's a very good question and when you look at things such as measles and you look at the rate of vaccination across the country, Tamworth, for example, 97% of the population there have been vaccinated. The same for Katherine in the Northern Territory. You come here to Fremantle and it has one of the lowest rates in the country, at about 75%, which I think is desperately disappointing.
I don't blame those parents for that. They are making decisions based on the information they have and I think we have as scientists have to reach out more and show the logical arguments, present the evidence in a very cogent way so you can make intelligent decisions. I support the idea that the Government has put in place about whether you have a vaccination and whether you then can have your child in a kindergarten or a school, kindergarten without the excess costs. I think that's a very good driver. But I think it's an education program. It starts in schools, but it goes right through the community. It's hugely important we do that.
And I was just having a conversation earlier that sometimes vaccination isn't 100% successful and we're beginning to realise amazingly that we all know you get on a plane, you get off halfway around the world and you feel dreadful, you've got jet lag, because we have a 24‑hour cycle built into our bodies. We are now realising the time of day you give a vaccination can influence how successful it is. So here's a tip for those who haven't had their flu jab yet. If you have it in the morning, you make more antibodies than you do in the afternoon. We're only just discovering this. So it might be important when we give the vaccination in the 24‑hour cycle to make it most efficient. But hearing the professor talk this morning reinforced in my mind if Rotary International has managed to almost eliminate polio from around the world, tiny pockets left, by vaccinating every child, a lot of that campaign came right here from Western Australia. Dr Ken Collins and others. Do we need a national campaign, international, about vaccination for meningitis and the like? Could you comment on that for us, please?
SPEAKER: Well, there is in fact the WHO has now a very large campaign running for that because they see the cost effectiveness of it. I don't want to sound arrogant, but you said that the vaccination rate has dropped here in Fremantle and things like that. It might be also a first world problem because when I visit overseas, go to these camps, the parents in these developing countries, they seize every opportunity, there's no regrets, they're full of enthusiasm and delighted at the opportunity to get the child vaccinated. It's also a matter of perspective I guess, yes.
GEOF PARRY: Professor Coates, one of the areas for which you're renowned is your work in indigenous health, particularly with indigenous children. In terms of hearing loss, describe for us what the situation is today in Australia and how effective have government programs been in combatting hearing loss?
DR HARVEY COATES: The average Aboriginal child in Australia and probably more in the outreach rather than in Perth has middle ear fluid or glue ear as we call it for 32 months of their first five years of life, whereas a non‑Aboriginal child it's 3 months on average. So that 32 months leads to problems with central auditory processing. Even when the hearing is normal later, they still have trouble communicating, hearing in background noise and so forth.
We are making slow progress. It is hard. We have vaccinations, but the vaccinations for middle ear disease are only making a small impact on acute ear infections, maybe down 6% in Australia, maybe 25% down in glue ear, but we're getting there but it's very slow. So why is there so much Aboriginal ear disease? Unfortunately it's to do with the social determinants of health, so this means that there's overcrowding, that there's 19 people in a house, that there's a lack of running water, the food that the children are eating is perhaps not what we would have because fruit and other nutritious foods are so expensive, there's the lack of running water makes it difficult to have showers and wash hands and all the rest. And it's fascinating. Last week I was up ‑ or two weeks ago I was up in a town called Candiwell, a little village on the Mitchell Plateau. Every Aboriginal child, and there was only 11 in the area, had normal middle ears. There was no fluid. Why? Because they lived in homes, they had not overcrowding, they had water running by, they had good food, they had beef cattle that they were actually ‑ wild beef cattle that they were herding and eating. They were almost back to the hunter gatherer stage where the food was good. It wasn't sugar and alcohol and there was no cigarettes. It made a huge difference. Yet I can go to another community and find that 80% of the children have middle ear disease and 40% have runny ears.
GEOF PARRY: What does that come down to? Is it the people who are running the communities, is it the Government isn't quite hitting the spots they should be targeting?
DR HARVEY COATES: I think it's multi‑factorial. Geof, I think sometimes the money is not going in the right place or a lot of money is being taken out on the way through to the people who should ultimately receive it. And I think the bottom line is, as Chairman Mao said, give me the children until they're seven and I've got them for life. We must teach them, just like we do in Eon Foundation, about nutrition and all the gardens we have stretching out to Groote Eylandt now in the Northern Territory. We teach them about nutrition, about hygiene, about what's good food to eat and what isn't, we teach them how to cook these vegetables. These are from small things we're making things grow ‑ literally.
GEOF PARRY: I'm going to throw it open to questions from the floor in a minute, but I want to ask the boys a couple of questions. Spartacus, as a year 12 student, how do you find the services that are available to you, the sort of help that you're getting today? What more could be done, do you think, to assist you to thrive and become a better person? How do you sort of assess the sorts of needs, your needs and how they're being met?
SPARTACUS DEVEREUX: They have been met, amazingly, in my opinion. It's up to me to take advantage of what's being given to me ‑ interpreters, note takers and captions. They're supplying all that for me. I need to take advantage of that and strive, push myself. I can't just rely on other people to push me to uni, I still need to put in the work. But other than that, the help and support I'm getting from Shenton College is just immense. It's incredible really. I couldn't ask for any more.
GEOF PARRY: Do you think that you're limited in any way? Do you think whatever you think you'll set out to achieve you will achieve?
SPARTACUS DEVEREUX: I think I have a big chance to get what I'm trying to achieve, I have a big chance, mainly because of Shenton College and the amount of help and support they give me. Like I want to be an immunologist in the future, I think it's a very interesting field, and Shenton College has allowed me, with all the support they've given me to get it. So thanks to Shenton College.
GEOF PARRY: And people around you, your family and people around you as well are encouraging you to meet those goals, because you obviously had before Shenton College people sort of pushing you along and guiding you?
SPARTACUS DEVEREUX: Mmm. Well, I'll be honest. In my younger years I didn't get as much help as I would have liked, but because of the support of my mum and my dad and my family, my mum is an interpreter for the deaf, so she could help communicate to me through Auslan if needed and, yes, I had all the support from my family to help me out. And my friends ‑ even when they are speaking English to me, they're very understanding. If I ask them to repeat, they don't get upset, they still repeat themselves. So yes.
GEOF PARRY: I'll ask you the same question, Lucien, how is school life for you and your ‑ are your needs being met?
LUCIEN MAART: Yes, my needs are being met. Coming from South Africa, I lost my hearing when I was in year 1 and we didn't have the best of technology up there, not the best of support as well. But my family has always been by my side and now at Shenton College as well, they have the best, the note taking, the interpreters and all that, the support is great.
GEOF PARRY: What do you want to be when you eventually leave school?
LUCIEN MAART: Well ‑‑
GEOF PARRY: You're a dancer, aren't you? Do you want to be a professional dancer?
LUCIEN MAART: That's always a goal, that's always up there. It's not easy, but yes.
GEOF PARRY: Is it not easy because of your hearing loss or is it ‑ just run through that because you're a champion ballroom dancer, new vogue, I'm not sure what the difference is, you might tell us. You're a champion dancer. How have you been held back ‑ by your hearing loss?
LUCIEN MAART: No, not really. In dancing you have to dance in time with music and all that, but I have worked my way up when I was having problems and all that sort of stuff, I've been there and I haven't been able to hear music and rely on other people to lead me there.
GEOF PARRY: You're doing very well because you're representing Australia I think in Romania and Hungary later this year. Do you have your partner sorted out? Can I throw it open to the floor. Who has some questions they'd like to ask anyone from the panel. Yes, please.
SPEAKER: Is it entirely possible that we can't achieve completely zero percent hearing loss and other symptoms like that due to personal choice?
GEOF PARRY: Dr Coates?
DR HARVEY COATES: A couple of years ago when I was in the States we had a geneticist from the National Institute of Health and he said that the advances in genetic engineering and in stem cell research like Gunesh mentioned is such that in three generations there will not necessarily be a deaf community because everyone will have been able to be treated and managed.
GEOF PARRY: Does that answer your question? Did you want someone else to ‑‑
SPEAKER: (Inaudible).
GEOF PARRY: Yes, sir, would you like to comment as well, professor?
PROF. GUNESH RAJAN: I fully agree on that. It's a matter of time when we'll get there. So there's two aspects, we can treat the deafness much earlier, basically we know when the baby in the mummy's belly, the embryo will have a hearing loss or not and that will allow us to already treat that very early on. Or over time if someone has, and if someone has or is born like that, we have these treatments then available obviously in a certain part. And then obviously if the prevention campaigns worldwide really have bite, then prevention will prevent the majority of that kind of hearing loss and deafness, yes.
GEOF PARRY: Professor Beazley ‑‑
PROF. LYN BEAZLEY: Can I answer that question?
GEOF PARRY: By all means. Then I have another one for you.
PROF. LYN BEAZLEY: Wonderful answers so far, but another aspect is the genetic origin of hearing loss and that affects conditions such as Usher's syndrome, possibly a third, up to half of all age‑related hearing loss is of genetic origin. So would you like me to explain a little bit more how we might tackle these hearing loss causes?
SPEAKER: No, thank you.
PROF. LYN BEAZLEY: No? Okay. That's desperately honest.
GEOF PARRY: But please continue ‑‑
SPEAKER: I already know about it (inaudible).
GEOF PARRY: But please explain for the rest of the audience, Professor Beazley.
PROF. LYN BEAZLEY: Okay. So I'd like to just tell you a little bit about how genetics works. You probably all understand, but I'm going to do it to make it easier for me to tell you. The treatments that are coming online now, and those for the future. If you imagine a cell is a bag and there's a smaller bag inside it and in that inner bag are the chromosomes. They're like a library of books and each book has recipes in it. The recipes are written as DNA. We all know the DNA is driving the colour of our eyes, the colour of our hair, how tall we are. If there's a mistake in the DNA, there is then a mistake in our bodies that we make and how we do that is if you want to make a protein, for example, you open up that DNA book to the page with the recipe in it and you need to send that information to the part of the cell, the factory that's going to make that protein. Mistake in the DNA, mistake in the protein, hearing loss.
To get the information from that DNA to the factory, which is in the outer bag, you make the genetic equivalent of a photocopy and you send it out to the cell with the instructions. At the moment we're only just learning how to correct that DNA if there is a mistake in it. But there are already ‑ and I'll talk about that in a minute. But there are also treatments coming online where you can change what's in that photocopy. A single page, so to speak, that's sent out to the factory floor. It's a technique called exon skipping ‑ EXON skipping. It was developed right here in Western Australia at the University of Western Australia and now at Murdoch University. It cannot rewrite what's on that photocopy, but it can block out the parts of the message that are wrong.
It's already available now to treat muscular dystrophy. It is not a cure. You have to maintain the treatment. As soon as you stop, the copy is no longer modified and you revert to producing the wrong protein.
I can see this is going to become increasingly important and I'm sure you'd agree for treating genetic disease. It's expensive at the moment. For every child with muscular dystrophy it costs about $30,000 a year, but as we know, all these treatments become cheaper with time. It's a very exciting development and there is work happening right now between Murdoch University and the Sarich Research Institute at the QEII site to look at diseases such as Usher's syndrome in which there's a protein that keeps those hair cells stiff and is found in the eye as well. So this is a very exciting development.
The other way is to change that DNA. If you change the DNA say when you just have a small group of cells, an embryo, as in in vitro fertilisation, you can take out one of the cells, find out if it has the genetic mistake in it. You could then treat that embryo, put it back into the mother's womb and it would grow as a baby that would not be suffering from the genetic defect. Technique is called CRISPR, but if you change that, you change it not only for that person but you change it for their sons and daughters and generations to come.
If we make that change, it might cure one disease but it might lead to another we don't know about. So there are big ethical issues about changing the DNA and whether we do it. But these are going to happen and within 25 years I think most genetic diseases we can, if we have the resources and the determination ‑ we could see genetic origin of hearing loss eliminated. Do you agree on that one.
GEOF PARRY: Another question from the floor. Yes, ma'am.
SPEAKER: I'm just going to stand over here so that anybody that can't hear in the audience can see my face as well. I'm the Principal of Shenton College and I'm so proud of our students up here involved in such a wonderful discussion about our future. There is an element missing that I would consider would be the cultural element of hearing loss. When your implant is off, you are deaf. I think we need to remember that we still have some sort of deaf identity and at Shenton we're working really hard to bridge the divide that Geof talked about. He said it's so different they don't even meet. You're right. We don't make it that it has to be this way or it has to be that way. We make it that it can be both ways. We can sign, we can use our voice, we can listen, we use our gifts. I think it's important that I bring this up in this debate or in this Q and A.
One other thing that we've offered is Auslan as a LOTE. So while all our kids are using the gifts that they have and now ‑‑
GEOF PARRY: Can you explain what a LOTE is, please?
SPEAKER: Language other than English. Auslan is ATAR subject at Shenton, it's our first year it's going through at ATAR level. There's about 200 kids doing it at the moment. They're not all deaf, most of them are hearing. They've chosen Auslan over French, Japanese. So it's a beautiful linguistic visual language that we don't want to lose. So we want our kids to listen with their implants, most of them are implanted, but they also can have the chance to study their own language as well. And this is proving to be a real success. So we don't have to throw the baby out with the bath water and we can honour the visual nature of deaf people as well because they do often ‑ they do turn out to be visual learners most of the time, although, as you can hear, our kids also use their voice. So I just think it's important to honour that and not be talking about the damage or the tragedy or the this or the that, which we don't see it that way and I wanted to say we don't see deafness as a tragedy at Shenton College deaf education centre.
GEOF PARRY: Does anyone want to pick that up?
SPEAKER: I'd like to reinforce how important that is. Wonderful Young Australian of the Year in 2015 Drisana Levitzke‑Gray I think was one of your students and she's just a wonderful inspiration and I learnt so much from talking to her, but one of the practical points she made was that with time often hearing aids become less efficient and also cochlear implants may do so. They might not continue to function well. So you probably want to have both ways of speaking anyway and you can then switch and see and each can support the other. So I think you're absolutely right. And how fantastic it would be if more schools actually took up your initiative. I think one other has so far, is that right, in the State? Belmont. Wouldn't it be wonderful if it was offered in far more schools? I think it would open a new dimension because quite often when I was talking to Drisana, I would see she could explain things in a way that for me was much more expressive than the words I used.
GEOF PARRY: It's an interesting point you make because in my research I sort of came across one view from a Sydney expert who says they're not into predictions or predictions are difficult, but it looks as if the population of deaf people who use sign language will continue to decrease so there'll be a time in the next 50 years when I feel comfortable to say the deaf community won't exist. I'm sure the deaf community would object strongly to that. Another one which I learned a couple of new words. One was "audism", which is the notion one is superior is based on one's ability to hear, and the other one is "sedophia", is the fear of deaf people, and that came from a woman who she says ‑ she's from Finland, here in Finland the deaf are treated like garbage by the majority ire of the population, whether in personal or official capacities. Audiologists, psychologists, psychiatrists and social workers are worst offenders with bus drivers coming in a close second. It highlights obviously there's certainly this strong feeling about the whole issue. As I was making the point before, professors, that not everyone embraces a means to make their children hear or to hear themselves. It's a very diverse community, the big D, the little d, they don't always talk, and for the two professors who work in the field, professor Rajan, do you encounter this on a regular basis or is it because you work mainly with those people who want the benefits of cochlear implant and want to be able to hear?
PROF. GUNESH RAJAN: I've encountered this quite physically, actually. I was in Nashville and I was invited by the university because our research group won an award for our research into implant treatment and during my lecture I was invited to give ‑ I had deafness community people come in and shout things and throw things and I was like ‑ I was a bit surprised by that, but nonetheless, how I deal with it? I totally agree, it's an asset. So I encourage ‑ I see it like another language, like you call it LOTE, and that's how I view it. Also the parents, it's just another option. Again for your child it opens up other doors.
GEOF PARRY: Spartacus?
SPARTACUS DEVEREUX: There's passive audism, whereas there's so much research into fixing our deafness, we're focusing on that so much that there's no focus about Auslan and deaf culture. We're not showing that to the world in comparison to focusing on just the ear and fixing that part of us, we're ignoring the culture and we need to remember that we can also learn sign language, we can use that. There's no focus on that. We're just focusing on the medical part of our deafness. The Government is focusing on the parts that we need to fix, rather than the other options of learning sign language and embracing deaf community and culture.
GEOF PARRY: I'll come to you. You had your hand up before. Do you want to ask ‑‑
ALEXANDER CLARKE: My name is Alexander Clarke, a member of the Hearing Council of West Australia. 64 years ago I gathered some courage because I went deaf when I was about 12, I had two operations, it's called fenestration, I've come out of the darkness into the light. I challenge not to put anybody in front of you changing the deafness community. I consider myself a good‑looking guy. I'm intelligent. I've got the gift of the gab. I can communicate on any subject. I left school at 13. I got cast aside and a lovely surgeon called Dr Harold Nash helped me. Dr Philip Nash, who's not with us today, and I'm having a wonderful life. I don't consider myself deaf. I know I've got a loud voice, but look, I encourage ‑ this is one of the best meetings I've been to, Barry. I encourage it, go out there, sell your message, don't let anybody confront you because I just read in the internet seven people to avoid today and avoid people that are negative. Thank you very much.
GEOF PARRY: Thanks, Alex. (Applause). A question from up the back, ma'am?
SPEAKER: Thank you, Professor Rajan. I was at a lecture from one of the principals at the Hearing CRC in November and you provided much more information about the developments in hearing, so I really appreciate ‑ or in hearing loss. I really appreciated that. But I'd like to talk a bit about this need for biculturalism with regard to people in the hearing loss community, deafness community, and also the Aboriginal community people are saying there, I think Fred Cheney, the answer is that people in the Aboriginal community need to be bicultural and I think that's being expressed today. However, the elephant in the room about this is the cost of interpreting because if you have chosen or your parents have chosen not to have the cochlear implant every time you have an interview with a doctor, lawyer, teacher, da, da, da, da, an interpreter is needed and interpreters cost money and I have been hearing quite a lot about the implementation of the NDIS in Adelaide and one of the problems in their plans is that there is not enough money for the Auslan interpreting that people need. So I just wondered what the panel think, should we consider that if people perhaps choose not to have their hearing loss treated, then that they pay for their own Auslan interpreting? It's a bit radical, but I just wondered what the panel's opinions about that would be.
DR HARVEY COATES: That is radical. If we're talking about cost effectiveness and the effect of doing something, the newborn hearing screening program which picks up children with permanent hearing loss within the first days of life has saved in future terms, in education and in health, $1.2 million for each child picked up in this country or in England something like 800,000 pounds or about a million Euros in Europe and these studies have been done and I have a paper attached to the Australian one.
So the same thing applies to hearing loss with Aboriginal children. The cost to Australia is in the billions of dollars for the conductive hearing loss seen in Aboriginal children ‑ billions of dollars, in life terms. If a child can't hear, they can't learn. If they can't learn ‑ this is Aboriginal children I'm talking about ‑ then they may go into a cycle of truancy and then they don't get educated, then they end up in intervention with the law often. And as you know, the number of deaf Aboriginal people is 91% in the jail in Darwin and even the young ‑ and this is something I'd love to talk to Chief Justice about ‑ that every child that goes into remand, every young person, should have a hearing test because we're finding through the Earbus Foundation 50% of the children in Bandyup have a longstanding hearing loss and therefore they can't understand. There's a poor woman who is a young Aboriginal woman in prison in Perth, she spends 23 hours a day in her cell. Why? Because she said when I go out, I can't hear. If I can't hear a command, I will be regarded as being obstructive or disobedient and I'll be punished or I might even have my sentence made longer. So how terrible is this? So there are a lot of financial implications and I'm probably coming at it a different way from you, but I'm talking about the cost to the community as a whole and how we must do something about it.
GEOF PARRY: I was making the point before, Barry, we were talking about the NDIS this time last year and how no‑one really knew in the room where it was going to go and they were encouraged by the fact the Government said it was going to be fully funded and it's not, it's now coming out of general revenue. So your question still sort of goes unanswered and I suppose when will it be answered is one of those questions that the community should be asking.
LYN BEAZLEY: I wonder if technology could come to our aid because if you can actually do face recognition when you come into the airport or a computer can look at me and know who I am, surely we could get devices that would follow and translate Auslan into sounds that people could then work with. So maybe in time our computers can help us do this technology, if we have the driver to do it, and I guess that comes down partly to how much governments will fund it, but also how much the corporate world sees an opportunity to actually do this, make a profit and do something for the community.
GEOF PARRY: It's interesting because I was watching the translation go up on the screen. It's as fast as I've ever seen it being done. In the old days when Kevin Campbell introduced text on commercial television it was as clunky as all get‑out and on the television it's still clunky.
SPEAKER: It's great now.
GEOF PARRY: This is, as I said, the best I've ever seen, so congratulations however this is happening. I'm sure it's coming from ‑‑
SPEAKER: Maybe back to your colleagues at university and give them a challenge. Start with a PhD project on it.
GEOF PARRY: We've got a question there.
RAY WALKER: Yes, hello. My name is Ray Walker, I'm a teacher of the deaf at Shenton College. I specialise in academic support for our students and they are marvellous. I was implanted four years ago. I lost my hearing later in life. So your question about interpreters, there are times ‑ I've actually gone back and learnt sign language. Before I taught in mainstream schools I lectured at universities. I cannot now work in a classroom with the noise. The cochlear is wonderful, I think the existing neural pathways I had allow me to use the cochlear to access sound really well and I understand speech really well, but in a noisy background, the sound input, it's too confusing, I can't make sense. So interpreting to me or being able to understand sign language is very important for my inclusion socially. So even with the implant I still need sign language.
I see the same need for young people that are implanted. It just gives you much better access to social environments. You talked about ‑ in your keynote speech ‑ isolation and depression that goes with hearing loss and I can attest to that. It is an extremely isolating event to happen in your life. So the cochlear implant includes people again. Sign language also makes social inclusion, allows people to have more of that as well. So I know ‑ say for example Spartacus, I think you lost your hearing at three months, is that right?
SPARTACUS DEVEREUX: No, I was implanted around 11, 12 months, but I suffered meningitis around eight months.
RAY WALKER: Yes.
SPARTACUS DEVEREUX: Several operations, then I had an implant.
RAY WALKER: And your parents decided to ‑‑
SPARTACUS DEVEREUX: Teach me BSL and English at the same time.
RAY WALKER: At the same time to maximise your access to language. So to me it's the perfect environment for you to grow up in.
SPARTACUS DEVEREUX: That's where the LOTE system we have in Shenton College is so important. It allows more basically interpreters. That's what the LOTE system is allowing for hearing kids to become interpreters for deaf and that's why it's so important.
GEOF PARRY: Lucien, do you use Auslan?
LUCIEN MAART: A little, yes.
GEOF PARRY: A little bit. So what are your sort of hopes for the future, we're talking about the next 25 years, you will I'm sure be at that meeting in 25 years' time. What are your hopes for the future?
LUCIEN MAART: My hopes for the future is of course that yes, Auslan needs to get out there, out to the world. Can you just repeat that question again?
GEOF PARRY: As a young man growing up, how do you sort of see the deafness and the deaf community and the way that it integrates or doesn't integrate in the next 25 years?
LUCIEN MAART: Yes, the deaf community ‑ it's a small community right now. It needs to go out there and some people still don't understand the way we learn and communicate sometimes.
GEOF PARRY: That's fine, that's a good answer. The young lady in the front.
SPEAKER: I'm profoundly deaf, my whole family is deaf. I don't disagree with cochlears, but I think if we just focus on the cochlear, home life can break down because we're not always hearing. With the cochlear we can take it off. I think that Auslan is a really good support in addition to a cochlear.
GEOF PARRY: Well said.
PROF. LYN BEAZLEY: Very good.
GEOF PARRY: Thank you very much. Professor Beazley, can I ask you, you were one of the great influences in getting the array, the wide area array, I think it's called, square kilometre array ‑‑
PROF. LYN BEAZLEY: Wide field array too.
GEOF PARRY: Several years ago I went up and did one of the first sort of parts of it, the commissioning of it, I went up and did a story on it and the numbers that they were talking about, the ability of it to crunch numbers, to absorb everything and sort of spit out an answer in record time was just mind blowing. Is that array ‑ do you see the sorts of results from that sort of technology which Australia is I think the other one is in South Africa, but it's a world experiment, isn't it, it's a world facility, the sort of technology that that uses will accelerate our learning and the ways that people in the deaf community will be helped, not just technologically but also as you were talking about sort of tablets and interpreting and that sort of thing?
PROF. LYN BEAZLEY: I think that's absolutely right. As a result of that, we have one of the largest super computers in the world here in Kensington and we've just had a Federal Government grant to enlarge it hugely. It's dealing with massive amounts of information, processing it, making sense of it. So I see those technologies applying very much to this whole community and debate. For example, to develop an app which will watch sign language, watch Auslan, and then give you the spoken word, that shouldn't be hard to do. We've got the computing power to do it and we have the brains here to do it.
The other thing that I don't think we've touched on at all is increasingly, and you heard from the area that I worked in, which was recovery from brain damage ‑ increasingly we can interpret brain signals and you think about moving your leg and then by having electrodes on the muscles in your leg it moves it for you. I think in 25 years' time we will be able to listen in to the signals of the brain a lot more and when you look at an object, such as a table, you could well get a device that would say the word "table" for you. So I think that's another aspect and that's way out there. This isn't as much extrapolating where we are as taking a leap forward, but I think that's one of the things that will happen that we will be able to interpret what we are thinking and bring it and share it with the world, which I think could be of relevance to this whole issue.
GEOF PARRY: Professor Rajan, I'm sure you and your researchers would be fully aware of that computing power. I'm sure you're looking at it and do you see that that is what is driving things like just these exponential improvements in things like cochlear implants?
PROF. GUNESH RAJAN: Yes, I think that's what I alluded to in this data. I think that's the big data component. As a matter of fact, it links perfectly with the listening brain. So as we are understanding more and more about the brain, I think we're just taking off in that space. Neuroscience is just going to explode and translating that into something translational, it means bringing it to the benefit of a patient is something very realistic. And the brain is unbelievable. To be honest, it's a miracle that the cochlear implant even works because in a year we have 20 to 30,000 hair cells and we are replacing that by an array of 12 to 22 electrodes and we're able to hear. It's not the implant, it's the brain that does it. So I think that's the realisation that's coming through and that will have a huge impact. I totally agree with Lyn that there will be technology, anything you can dream, it will be possible, you know what I mean, seriously, because with that knowledge and the more we're learning about the brain and getting the technology to go hand in hand with that, it will be amazing.
GEOF PARRY: Dr Coates, you're going more and more or seem to be concentrating now more and more on infant hearing or detection in newborns and Aboriginal infants. Do you see the application of technology simplifying your job? Can you see the day where someone who's not greatly trained but can go out and test a child with some small device and you can read it all back in your office and then you can intervene a lot quicker?
DR HARVEY COATES: Absolutely. I think this is one of the problems we have in Western Australia with our large area of a million square miles or 2.5 million square kilometres that if a child has a newborn hearing test in Kununurra and they refer, then the only place that the whole family can come down is to Perth to have that tested. Now, there's no reason why with technology ‑ and I've been talking to the medical director of the Kimberleys about this and I think I can get funding for it, so it's just a matter of making it happen ‑ that we could have an ABR, a diagnostic machine that could be run from the Perth Children's Hospital or from another institution and the person who does the hearing test who's usually a nurse or a screener, can actually put the electrodes on the baby and the whole test can be run from Perth. Now, that obviously is going to save an enormous amount of money bringing a family down and staying here while all the tests happen. Similarly, as Gunesh mentioned, to do testing of the child's hearing in utero is ‑ it's mind boggling to be able to do that and pick up hearing loss at that time.
With the Aboriginal children, I think that it's the fundamental underlying health issues that we've got to get right first, so that is that, but there are things like having sound field systems in the room so that all children can hear better. The teacher wears a microphone, much like we have now, and everyone can hear. There are practical problems. In the Kimberleys they used to have wires everywhere and the rats used to eat the wires and then it wouldn't work and the teachers didn't want it. Now, because of blue tooth, we should be able to use this and with speakers in the corner and we won't have to worry about wires. So technology is going to make our life an awful lot easier.
GEOF PARRY: Some more questions from the floor? Just one off to the left and then I'll take the lady up the back again.
SPEAKER: (Inaudible), I'm from CICADA. I've had hearing aids for many years, one cochlear implant, another one next week. It's been a problem for many, many years, not just me but other people, initially people going deaf is losing the ability to discriminate and it's the same with cochlear implants. I've certainly heard of artificial intelligence, but I'm wondering about the application of that in hearing aids and cochlear implants to get rid of that background noise and hopefully restore discrimination. I'm just wondering if there's any interesting comments from the panel there.
PROF. GUNESH RAJAN: So one phenomenon that you'll encounter, we'll encounter, as the children are implanted at a much earlier age, they'll be able to do much more with the cochlear implants. Even now we always see the first studies coming out with children implanted at the age of 6 months and they have normal hearing really, speech discrimination and sound localisation is close to normal. So I think that's what we are only tapping into because we are using the brain much better. That's why the earlier you do it, the more the brain can really take over. The other good side is the listening effort is much lower. That goes hand in hand. The earlier you implant, the lower the listening efforts and the less energy and power the brain needs to focus on just hearing, so that's all this other power left for all the other skills and faculties left. And with the technology that's clearly going there. I don't know whether you know Blake Wilson and Michael Dorman, the implant alone is useless, the signals of the implant alone. It's how the implant signals are presented to the brain and there's going to be further developments. Even in the last five years we have new ways of stimulating the implant and things like that. That will change and that will change probably with AI, I think that's a very good suggestion, that will again ‑ that's one technology area that will revolutionise a lot of things, so why not also the implant space.
PROF. LYN BEAZLEY: We can take the technology from other areas. There's even a company here in Perth called Sensear, they've developed headphones to wear in noisy environments, say on a mine site. You want to hear what people are saying, you don't want to hear the machines, and it can selectively pick out those particular sounds which are the human voice increasingly as well as everything the professor here has said there'll be improvements in electronics that will allow us to select and highlight those aspects that will suppress what you don't want to hear and emphasise the Ss, the Ts, the Ks that you want to hear in words to make it clearer.
GEOF PARRY: I think we've probably got time ‑‑
SPEAKER: So it's putting everything together.
GEOF PARRY: We've probably got time for one more question. The lady up the back, the question must not have been answered, she's come back.
SPEAKER: It was very helpful last time, thank you. The largest group of people with hearing loss of course are those who have age‑related hearing loss, like me. There was an article in The Lancet late last year talking about the association between not using hearing aids and dementia and from various parts of Perth I've come across people I know who've had in the drawer hearing aids who are suddenly getting them out again because they are frightened because of what the doctor said that they are going to be having dementia. So I wanted to ask if there has been any further research that's come out recently which is actually saying not using the hearing aids is causal rather than having an association with dementia and hearing loss, that's the first part, and the second of course is that we've had the campaign to make hearing loss the 10th health priority for Australia. The committee that was looking at it last year has supported that. It is yet to go through parliament. And I'm just wondering if the medical people on the panel might be able to comment on the sort of support that perhaps GPs and health professionals might need to improve things should hearing loss become the 10th Australian health priority.
GEOF PARRY: It's interesting you say that because my wife just recently was diagnosed with a moderate hearing loss and I said to her now we've got two deaf people in the family. She replied and one stupid one, and she wasn't referring to our other daughter. Dr Coates, would you like to pick that up?
DR HARVEY COATES: That's a very good point. I believe it's probably not causal, but it's associated with the isolation and so forth. The other points I'm not 100% sure about. I think it would be best if Professor Beazley or Professor Rajan answered those. It's out of my area of interest.
PROF. GUNESH RAJAN: I can talk about hearing loss and mental health and dementia. I think the Lancet article, I think it was also misinterpreted. So I think that's the main ‑ I remember debate in another conference and there was a clear misinterpretation. I think the big data as well so far suggests that there's a clear connection between hearing loss and cognition, dementia, depression. So in fact now a lot of European countries are revising their cochlear implant criteria or hearing aid criteria to be more aggressive, to really make use of the protective effect of hearing loss for dementia, for example, in the elderly population. So I think, yes, I would be careful with that interpretation that's going around about that Lancet article, yes.
GEOF PARRY: Professor Beazley, did you want to add anything?
PROF. LYN BEAZLEY: Just to add you really couldn't ethically do an experiment to see that they were causally related, but the associations seem very strong.
GEOF PARRY: Okay. All right, before we wrap it up, I might ask the two younger members of our panel, Spartacus, I'll start with you, do you have confidence about the next 25 years and what the future holds and developments and those sorts of things? Are you happy about what you've heard today?
SPARTACUS DEVEREUX: Yes, to be honest with you. Not much to add.
GEOF PARRY: Okay. I'm not going to force you. You're confident you see ‑ I think you said before you want to be an immunologist. It's obviously a field that interests you. As our three eminent experts here have pointed out, there's so many developments and so many sort of areas that you're going to be involved in.
SPARTACUS DEVEREUX: Yes.
GEOF PARRY: Lucien?
LUCIEN MAART: Yes, I'm pretty confident what the next 25 years are going to be like, yes.
GEOF PARRY: Good luck with the dancing. You're going to be a world champion?
LUCIEN MAART: Hopefully.
GEOF PARRY: Good on you. We might wrap it up there. Would you thank the panel for us, please? (Applause).
BARRY MACKINNON: Thanks very much, Geoffrey. Let me wrap up the whole proceedings. It's really interesting to just start these comments on where you finished there, Geof. Spartacus is talking about being an immunologist. 20 years ago there would be no chance in the world that he could have become an immunologist, not a chance, because at universities there were no interpreters, there were no note takers, there was just no ability whatsoever for a person who had the skill but not the hearing to actually progress that far. In fact, one of the boys my son went to school with became a vet, he's the first deaf vet in Australia. He's now 40. So that would have been 20 years ago. But 25 years ago not a snow ball's chance in hell. It's fantastic to see how far we've progressed in that time and how far we can perhaps progress in another 25 years.
Can I just run through them all. Gunesh was fantastic in terms of his comment, you gave us a good idea about the future with stem cells and a whole lot of other things. Thank you very much for your time, Gunesh. Lyn told us about genetic research, the technology with voice recognition, which clearly I think has got great potential, and really the best piece of advice you gave us was I'll get my flu shots in the morning, Lyn, no doubt. And of course when you get to my age, you get them for free, fantastic. Not many advantages of getting old, that's one of them. Harvey of course has been a pioneer and wonderful work amongst the Aboriginal community and he's right, we all know that, there's progress being made, but slow, that's the real challenge for us I think over the next 25 years, to get Aboriginal people and their health concerns up to be reasonably comparable statistics to what the rest of the community. It's a big challenge. Spartacus, the future of this country is in great hands. Thanks very much to both of you in terms of your contribution. You made a very good point. The school support you get now is fantastic, it really is good, thanks to your teachers and people who support you. The other point you made I think which was equally important and that is the importance of diverse communication. No matter how you communicate, it's important and we support that.
Just a word of ‑ another comment, by the way, because we talked about it today and Geof and I talked about it last year, we have in fact got an NDIS representative coming to talk to our deafness council meeting on Monday night and we'll be able to find out a fair bit more about what's happening we hope in that NDIS space on Monday night. So thank you very much to all of you and the only other person I wanted to thank or other people I wanted to thank was firstly Geof. Geof gave a great ‑ did a fantastic job today, mate. We obviously thank you (applause). I know you're interested in form, but you put a lot of research and work into today, it wouldn't have been anywhere as good as it was without your support and the quality of the panel we had, so thank you very much. Thanks also to all of those people who supported today, the WA deaf arts people, the interpreters, thank you to the interpreters, to the panel members, and most of all to Julie Edmonds. Julie, again thank you very much for helping put together today. It was fantastic. Keep well, keep safe, as I always finish with these meetings, I say go Dockers. Thank you.
SPEAKER: Can we have a big vote of thanks for the MC here, who has been absolutely wonderful. (Applause).