Joy has been my friend for so many years. She has been with me throughout my life journey. Every single thing that made me happy she has been there with me. Without fail she cried and laughed with me. From the deepest life moments to simplest ones. She was there, always with me. But she has been missing of late and I miss her so.
As a kid she was always there with me. In the backyard with my toy trucks and cars. Digging channels and filling them with buckets of water. The trucks helped me make the channels. My own little rivers and reservoirs. My Gi Jo would swim within them and save the world, kill the sharks and be the hero. Joy was there with me laughing and in awe at these simple pleasures.
And when every weekend when the butterflies hit. Soccer was on and a goal was to be had. Joy was there with me. She shared my excitement, she shared my thrills. Each goal I scored she celebrated with me. The goal where I beat four players from the half way line to slot it though. The goal I hit first time on the volley. That very first goal I ever scored at the age of 7 from a neat pass from Keith Webster. Joy was there. She cheered and screamed with me, louder than even my mum.
And when My dad gave me twenty cents a goal. Telling me I played well but at the same time giving me advice as to what I could do better. As I spent the money on lollies and pop, dreaming again of the goals that I had scored and would score. Joy enjoyed the moment with me. These simple pleasures she understood.
Even in hard times she was there. After a badly broken arm that made me have to return to school she was there as I tackled year 12 and passed.
She was there through the trials and tribulations of university that I overcame. The graduations and the first job. She was there throughout my achievements as I tackled the world and helped to make it a better place for people with a disability and those who are Deaf.
She felt my pain and sense of achievement as each barrier was broken down. I and others benefitted as a result. Her pride in my achievements was as great as my own and my parents.
That first job at the Deaf Society. Assisting Deaf people into employment. The first job placement I got for a Deaf person with the post office. The bar course at TAFE that I established for Deaf people, she was there. The Australian first mentor program for young Deaf people. The first fully accessible website. She was there with me. Proud and humbled at what I had done.
My first kiss, my first girlfriend. She witnessed them with me. From Michele, to Liz, to Kirsty and to Anita she was there. Happy, excited and exalted as these women helped me grow into the man that I am today.
And that day I met my wife. At my front door, in my Humphrey Bear Boxer shorts. The day I said hello to the woman that would share the rest of my life with me.
She was there at the birth of all my children. She laughed with me as Aden peed on his mother as he was first introduced. She stood in awe as each of my children was birthed. She watched eager and with pride as they grew into the brilliant young men that they are today.
Joy was there for everything. My happiness was her happiness.
And the day I married my wife. My wife arrived early and I was chatting with my groomsmen at the front of the church. I had to scurry down the aisle. The moment I said I Do. She was their as we laughed when Paul walked in on us consummating our marriage. She laughed with Marnie and I when our friends trashed our wedding room. Joy has shared everything with me.
The sunset, the flowers and the holidays. The dogs I have grown up with and Pepe the budgie. My family holidays at Stansbury, Kangaroo Island, Port Lincoln or my wonderful holiday in Italy with Marnie.
The good times shared with friends. The wonderful meals and the glasses of wine. The whisky with old friends and simple good times. Joy has shared them all with me. She and I have been lucky.
But lately Joy has been missing. I miss her. I need her. I hope she returns soon. Life without Joy is not much life at all. I am sure she is not far away. Please Joy, come back soon.
I am having a love hate relationship with Deafness forum at the moment. I get it that they have a broad mandate. I get it that they have to promote hearing health and hearing loss prevention. I know losing your hearing is fucked. It’s hard work. I wouldn’t wish it on anyone. Ok, let’s do our best for those that can hear and assist them to continue that way because adapting to deafness at a later age is horrible. It is isolating and soul destroying.
BUT that does not give Deafness Forum and excuse to turn every single person with a hearing loss into a sad sack. It does not give Deafness forum an excuse to promote hearing as the utimate and only way. It does not give them and excuse to turn people with a hearing loss into lesser beings who can only be complete if they hear!
Remember Prawngate? People may well remember that a hearing aid company advertised tiny hearing aids. They had a photo of a deaf person wearing two prawns behind their ears. You know big ugly things. My wife was so traumatised she could not wear her aids for a year. She has a phobia of prawns you see. Yes, I jest.
The point is that the advertisement painted deafness in a negative light. It depicited deafness as something that needed to be hidden. In doing so it belittles all deaf people. Rightfully the Deaf Community erupted. The company concerned immediately removed the advertisements and apologised.
The Royal Institute of Deaf and Blind Children did something similar when it had a fundraising campaign depiciting deafblindness with a teddy bear with no ears and no eyes. Likewise they removed the ofending ads when the Deaf community erupted and also apologised.
In the space of two weeks Deafness Forum have shown nothing but rank audism. First they published one of those inspiration porn videos of tearful parents at Cochlear Implant switch on time – ” Johnny hears I love you for the first time.” type video. We all know what misleading and damaging twaddle this is. Then, inexplicitally, they published a video asking us all if we could hear and identify the different bird calls in the video and finally they had this. Click on the picture to read.
What is wrong with this article? Well, once again it depicits deafness in a negative light. It belittles deafness. Says Ita, “My father was so stubborn about his hearing loss. We’d have conversations where I’d say something like, ‘The sun’s out’, and he’d say, ‘Yes, I missed the bus’”
And yet again it paints deafness as something that is embarrassing and needs to be hidden – “We are an ageing population and the hearing aids nowadays are so small and so much better..” The worst thing about the latter comment is that it makes deafness out to be just about getting old – of course it is not and deafness can be found in all age groups.
Now I know Ita meant well. My issue is not with her. My issue is with Deafness Forum sharing this article. As an advocacy organisation Deafness Forum need to be educating the media as to how they should be talking about deafness. They need to be educating the media about using positive imagery and about steering away from the constant negativity surrounding being deaf.
While I acknowledge going deaf can be hard I know there are thousands upon thousands of people who are deaf who don’t want to be constantly depicited as sad sacks that need to be fixed! More importantly we don’t want hearing to be promoted as the ultimate and only way!
There is a way to promote Deafness in a positve way. Hiding it and denying it is not one! Promoting hearing as the ultimate is not one. We need balance and Deafness Forum at present are not doing that – I am sick of the Audist drivel they are promoting – They have to do better than that!
In closing I present for them a sample of positive imagery in deafness – PLEASE TAKE NOTE!
A good friend agreed to be my referee for a prestigous Board position recently. It’s not one of those Board positions where you are expected to volunteer your time out of the goodness of your heart. They will actually pay me for my time. A rarity in the disabity area where we are expected to give and keep on giving. But this post is not about that, its about what my friend said when he completed my referee check, “I described you as a pioneer for access to tertiary education for disability ….”
I laughed and made some self-depreciating comment along the lines of, “My invoice is in the mail.” But truth be known I was proud, touched and even a little emotional. You see my journey to education access has been a long one. My friends kind comments gave me pause to reflect. I decided to write about it, as I do. But it is a long story so it will be in two parts. I hope the reader finds my journey to accessibility as interesting as I have..
My Deafness became profound between ages of 9 and 10. It was not a fun time. I was fitted with hearing aids and wouldn’t wear them. Not an uncommon thing for young deaf kids. I couldn’t hear much with them anyway. My academic work suffered. I went from being near top of the class to near the bottom. That is the sort of impact not being able to hear can have.
I had no support in class. I kind of bluffed my way through. Copying friends work. Constantly looking over my shoulder. Trying to work out what to do because I had not heard the teacher. Always in trouble because I could no longer monitor my voice. I couldn’t whipser and still can’t. I was told to be quiet constantly. “TELL KERRIDGE TO SHUT UP.” Dutifully my desk mates would let me know I had that I had been thus told. I came to loathe school.
One day we had music. We sang along to Scotland the Brave. I sang too, following the words from the song book. I was really into it, belting it out at the toop of my voice. Suddenly I became aware that I was the only one singing. I was miles behind everyone. Out of tune too. Everyone was staring. Even the teacher had to stifle a laugh. Comical as it must have been, my humiliation was extreme.
And you know friends treat you different. They no longer want you on their team. You are always chosen last. And they tease you. They try to make you lipread things wrong. “Are you a girl ….???” – “Are you a poof …???”
Kids are cruel, extremely so. I knew what they were doing and sometimes I would play along just to see their reaction. Believe me deafness can lead you to lose faith in people very quickly.
You feel stupid. You feel worthless. Your school work comes back with an F. Your maths is all wrong. You dont know what to do when the teacher is explaining games or activities. You just want to curl up and die. It is hard, very hard. This was what school was like for me for four long years.
You try to compensate. You become the bad kid in the class. The negative attention to your behaviour is better than the constant struggle with deafness. You talk all the time so you dont have to talk to people or listen to them. You talk over people and distract everyone. You see, doing all the talking is better than having to listen when you cannot hear.
It was a traumatic time. A horrible time. It came to head in high school, I began to wag school rather than have to confront the evey day struggle of being deaf in a hearing school. I would catch the bus and travel right on past the school. All the way to Elizabeth shopping centre. I was well informed though because I would read the newspaper on the public toilet from start to finish. I did this for fourteen days in a row before the school saw sense to call my mum and ask where I was.
I was in a bad way at the time. I experiencing paranoia. Being deaf in a hearing environment, when you are the only deaf person, is a nightmare for any adolescent. I well recall sitting at the back of the school bus religiously. I did this so that I could see everyone. You see I had this unhealthy fear that people might talk to me or about me. Not being able to hear people caused me paranoia. I feared they were all talking about me and laughing at me. By sitting at the back I could at least see everyone and in this small way my anxiety was lessened.
To cut a long story short my parents decided that I needed extra support and I ended up at the now defunct Centre for Hearing Impaired Children at Strathmont High School. There I received support for the first time since losing my hearing around the age of 9. I was 14 years old. For the first time I met other deaf young people. For the first time I was exposed to sign language. With support from the teachers of the deaf I began to rediscover my academic mojo.
Support at the school was just adequate by todays standards. I mean when I started at the school I could not sign. Interpreting classes was not really an option. But also, looking back, the signing skills of the teachers of the deaf was so poor it was probably a good thing that they did not interpret for me.
Instead they took notes. They would sit next to me me and note the SALIENT points of the class. I emphasise salient because the access that I got to the information was entirely dependent on whether the teacher of the deaf thought it was relevant or not.
So I still missed out on a lot. I missed out on peer learning for example. I missed most of the questions and the answers from the class. All this is important for learning. Still, the note-taking of the teachers was adequate enough for my academic progress to pick up.
I was not then, and am not now, your ideal student. I get bored and distracted easily. My mind drifts. I would have “Can’t be Fucked” days and fake sickness and stay home. I often missed the bus and was late. In short, I did not help myself. In hindsight those teachers did a wonderful job with someone who was often his own worst enemy.
I am grateful for the support that they provided. I have no doubt that without it, and if I had stayed in a mainstream school without support, it is unlikely that I would have succeeded academically at all. I hate to think where I would have ended up given the traumatic experience of school that I had experienced before moving to Strathmont.
The school was a bit of a culture shock really. Deaf kids are so nosey. They gather round you and ask you so many questions. You Deaf? Your parents Deaf? Brother sister Deaf? How go Deaf? You sign? They never shut up. The thing about these kids that I noticed,. even at that early age, was the gap in their language. Well at least their English language. Their writing was appalling. They didn’t get my jokes. I was used to odd looks when I told jokes but completely blank stares was another thing altogether.
My arrival at the school was not a romantic ever after story but it was the awakening in me for the fight for Deaf rights. I mean I had just come from five years of hell. A hell that no kid should ever have to experience. I was bitter about that. I was witnessing, although I did not know it at the time, language deprivation among deaf kids for the first time.
I was full of questions. Why was their English so bad? Why did the kids from Deaf families, who signed and didn’t speak, have better English than the kids from the hearing families? Surely the reverse should be true? As I learnt to sign I realised that the teachers of the deaf at the school signed terribly and sometimes even struggled to understand the deaf kids. This realisation left me appalled.
I remember soon after leaving school I penned an article for the Parents of Hearing Impaired Children in South Australia. I basically decried the horrendous signing skills of the teachers. I told the story of the art teacher, a Mr Dumucious, who became a fill-in teacher of the deaf. Jovial guy as he was, he couldn’t even finger spell properly. There was no way he would have been able to support deaf kids in class. Yet there he was, employed as a teacher of the deaf.
I wrote the article because I wanted better opportunities for Deaf kids. It did not go down well at the school. I was the poster boy you see. The first to matriculate from the school or any Centre for Hearing Impaired Children. The principal of the time let me know what he thought of me for writing it. His choice of language was, shall we say, colourful.
My journey to matriculation was not plain sailing either. I left school twice. You see deaf kids were not supposed to be academic. They were supposed to work with their hands and in factories. The world of the Deaf professional was unimaginable. How would they communicate? How would they speak on the phone ? How would they satisfy consumer and client needs? Impossible! Factories and making things or simple admin work were the way to go.
The problem was that I was lousy with my hands. Luckily, perhaps, I was involved in a road accident when I was starting out as a cabinet maker. I had to get lunches for everyone on a colleagues bike. I would cycle to and from the local bakery with lunch orders. One day I foolishly pulled out in front of a motorcycle without looking while turning the corner. I was sent flying and broke my elbow. To this day I cannot straighten out the elbow. That was the end of my quest to make cabinets. I was lousy at it anyway, but at least it set forth a chain of events where I matriculated.
Matriculation brought with it the challenges of university education. This at a time in Australia when support for students with a disability was almost non existent. This is part two of my story – a journey to accessibility.
Oh how I laughed when I first saw this video. It is a brilliant send up of all those emotionally manipulative videos that try to inspire us. You have little kid sitting on mums lap. Either they are turning on his/her hearing aids or their cochlear implant is about to get switched on. The eyes of young kiddie light up. Mummy says. “I love you” and tears abound. The headline invariably reads, “Child hears I love you for the first time”
And people buy into this you know. They want to believe that miracles do happen. They want to believe that sad, tragic deaf kid has been fixed. Sad tragic deaf kid is now like everyone. NORMAL. They can hear and at that very moment their life just suddenly became enriched and worthwhile. Saved from the tyranny of silence. How wonderful. Except it isn’t.
Now, don’t get me wrong, I am not anti-cochlear implant. Many of my friends have implants and love them. Golly, if they break down or are forgotten, for many of my friends this is akin to near death. There are many young people that I have worked with who have done wonderfully well with their implants. They have great language development. They are educated and confident. The implant is a great thing. Australians are rightfully proud that it is an Australian invention.
And we should celebrate this. It is a good thing. BUT – what we should not do is mislead. These videos of kids at switch on time are misleading to the extreme. It never happens like this. Switch on time is just the start of a long and exhausting process to learn how to hear with an implant. It does not happen straight away.
As a friend told me. The switch on is traumatic. It is traumatic because all you hear is noise. I am told that initially it is not pleasant. It is even irritating. For some the sound is so horrible that they burst into tears. For some it is a sound that they can not countenance and they do give up simply because they hate it.
For others it’s just the start of their battle to hear. It takes resilience, patience and hard work. When it works it is fabulous. When it doesn’t it’s frustrating, For some they feel like a failure. Their hopes raised so high and to not be able make good use of their implant after the pain of surgery, it is a very frustrating and traumatic thing.
Some kids grow to hate their implants and do away with them when they are adults. Some are bitter that they were forced to have the implant. I have known some so angry and bitter that they have had surgery to remove the device. As an interpreter friend told me once, switch on time is often one of shock and tears. It is not a time of joy.
For all these reasons videos like the one below are dangerous. They raise unrealistic expectations and, at worst, set people up to fail. They give parents a false hope and do not tell the story of the long hard slog to able to hear using the implant, This is just wrong.
As an advocate for deaf people over many years I have always wanted to ensure that people get accurate information so that they can make informed choices. Nothing offends me more than the hearing world promoting an idea that deafness is a tragedy.
Sure for some it is, especially latter deafened people who must learn to adjust. The onset of deafness can be socially isolating and lead to social withdrawal and severe depression. But Deafness is not always that way and it does not need to be that way. The experience of deafness is varied and for many a very positive thing.
For many years I have witnessed and had to work with language deprived young people who are deaf. I have had to work with language deprived adults as well. I have seen their struggles to be educated, get a job and to be involved in the world on an equal footing. It is a tragedy that really need not happen. It is not for nothing that the late and great Oliver Sacks described deafness as a preventable form of intellectual disability. (With apologies to readers and friends who will find the latter statement upsetting.)
Usually this happens because parents are given false hope that technology and hearing aids will provide all the answer. More often than not this is not the case.
Sure I understand hearing parents wanting their deaf child to be part of their world. I even understand Deaf parents of Deaf kids wanting their Deaf kids to be able to hear as well as they can so that they can be part of both worlds. But to ensure this happens accurate and realistic information needs to be shared. False hopes and media beat ups like the above video need to be avoided.
Recently Deafness Forum Australia, to my immense disappointment, shared such a video on Facebook. For an organisation that represents both Deaf and hard of hearing people to share such a video is unforgivable. Thankfully Deaf people and hearing professionals from all over Australia let them know how appalling it was to share such videos. Deafness Forum sensibly removed the offending video.
That they shared it in the first place tells me that the culture of the organisation is becoming increasingly audist. Indeed their Hearing Health campaign, needed as it is, is nearly all about hearing and prevention of deafness. This is why I am no longer a member, It disappoints me because as an ex-Board member I know that the Deafness Forum of old would never have countenanced sharing misleading information such as the above.
But realising their error they took it down so kudos to them for that. Let us hope that they have learnt their lesson and never again consider sharing such biased and misleading videos that are akin to hearing propaganda.
In closing I share a comment of a deaf person to the offending video and post from Deafness Forum.
And that is the reality for many! Poor form Deafness Forum, lift your game.
Many years ago, I had a coping mechanism for being deaf. The coping mechanism for being deaf was the power of opposites. This is basically a philosophy that dictates that for everything to exist it needs an opposite. Without an opposite there is almost no way of comprehending anything in life.
Let’s say that if we only had one colour in the world everything would just be a blur. We have different and opposite colours so that we can see properly, see the difference and in this way we are able to make sense of our vision. This is virtually for all our senses and understanding of the world. For large there is small. For fat there is thin. For loud there is quiet. For love there is hate and so on. All these opposites allow us to understand and appreciate meaning and life forces. They assist us to make sense of the world.
Deep, I know. But that was my coping mechanism. You see when you lose your hearing, and I did as a lad, it is devastating. You suddenly must adapt and adjust. Everyone suddenly treats you differently. As a kid friends began to tease me and even avoid me once that I became deaf. Your parents are stressed and worried. You become, suddenly, almost every topic of their conversation. You visit specialists and get hearing aids. Everyone points at your ear and says, “What’s that? You are made to feel different. It’s shit! That’s the best way I can describe it.
So, opposites? Well the opposite of hearing is not hearing. To understand hearing one needs to know what it’s like to not hear. So deaf is the opposite of hearing. All the shades of deafness and all the shades of hearing are necessary for us to be able to understand what hearing is and to comprehend what sound is. There is high and low pitched. There is sweet sound and grating sound. Fundamentally being deaf allows us to know that we actually can hear. My defence mechanism was simply that without me and people like me, hearing people would have no comprehension of hearing. It would just be a cacophony of senseless white noise is what I reckoned. My place in the universe was so that others could hear. I was, therefore, an essential part of existence.
Of course I didn’t think this deeply when I was 8. I was no super genius or anything. But when I entered adolescence, as we do, I began to think more deeply and try to make sense of what had happened to me. A lot of this was because of my dad who was an immensely spiritual and deep-thinking person.
My dad believed in god you see. I don’t. Not as he did anyway. I tend to think there is something out there, something awesome and mysterious. A power, a force – just a something – that led us to what we have today. I don’t know what it is. I don’t think anyone does or will ever know. Something was just there to start with, whatever it was. We humans cannot comprehend this because the opposite of something is nothing. The problem is if we had something there was never nothing. Paradoxically if there was nothing there was never something because something never comes from nothing. This makes no sense, whatsoever, to the human mind.
For my dad there was a god. Not a Christian, an Islamic one or anything really in the traditional sense of man’s concept of gods. For my dad there was far too much order in the world. Way too much order for anything to have just happened randomly.
My father explained his view to me many times. A minute has sixty seconds. Sixty minutes makes an hour. 24 hours makes a day. The earth revolves around the sun in that amount of time. To my dad this was well planned order. He knew that if the earth got slower there would be catastrophe.
Did you know, for example, a slowing down in the earth’s rotation could lead to average temperatures of 35degrees, oceans would expand, land would be lost, crops would be lost and there would be mega storms. Our very survival would be compromised. Indeed we would be in danger of being wiped out.
My dad he was fascinated as to how animals were all so similar. That they had a heart to pump blood, lungs to breathe, organs to break down food and so on. He was fascinated that there was oxygen and that without it or less of it we would die. He was fascinated that there was the right amount of oxygen in the air and that if this changes our very survival is challenged. This, according to my dad, could not just happen randomly. It was something that was designed.
To him there was no doubt that there was an intelligent being or force that created all of this. It could not have just happened, there was too much to chance.
And from my father’s teachings I developed my own philosophy of opposites. This ultimately allowed me as a teenager to come to terms with my deafness. You see these opposites were part of the scheme of things, they were there for a reason. They were not there by chance. They were there so that we could exist and be aware of our very being.
BUT – were these opposites created or were they just a lucky fate of chance? To me that was not the question. Opposites are there so that we know the difference and without them our existence would make no sense. In fact our senses would be in absolute chaos. As a young man that gave me a small reason to understand why it was me that was made deaf. Many times I have cursed the gods for my deafness, and still do, but my little opposites philosophy gave me solace in those moments of anger.
And you know it shaped my philosophy in life. It convinced me that I matter. It convinced me that my purpose in life was more than just being poor little deaf boy. My existence and my deafness was and is vital to our existence.
Look, people with a disability don’t just help people know that they can walk, hear, learn and see – they provide jobs and security to millions. Whether it’s through support or technology, if you take people like myself out of the equation the world will collapse – And not just because nothing will make sense but because millions will be without a job and an income. Believe me you need us in so many ways. We aint no burden buster, we are NEEDED.
And there ends your philosophy lesson for today. I thank my dad for my resilience and my approach to life. I suggest we all take a little page out of his book – Just remember, everything exists for a reason – and yes THAT MEANS YOU!!
Last week the Australian Government announced that there would be a new provider for the National Relay Service (NRS). For those not in the know the NRS is the service that allows people with hearing and speech issues to access the phone through a third person who assists by voicing typed messages and typing voiced messages. There are other nuances of the service too such as assisting people who have speech difficulties be understood over the phone. There is also the Video Relay Service for Auslan users. Let’s not forget SMS relay and the emergency relay service too. No question it is supposed to be a fantastic service. Here is hoping that Concentrix , the new provider, can maintain the lofty standards of old.
I say standards of old because the current NRS is no where near the standard of old. It had become so bad in recent times that one would only ever use it if forced too by absolute need. Wait times were appalling, drop outs occurred and I found myself, more than once, being asked bizarre questions, “Give me an idea of what you will be talking about?” I was once asked. I answered this by saying I am just calling to say I love you. They must have got a shock when I was actually calling on NDIS business. I was once told I could only wait three minutes on hold. I tell you this was rubbish and is apparently not even policy. Imagine phoning Telstra and only being able to be on hold for three minutes? FFS, nothing would ever get fixed.
But yes that is what the NRS had become. A bit of a shambles actually. How sad it is that this is what it has become. I have fond memories of when the NRS started under the old provider, the Australian Communication Exchange, (ACE). ACE set the standard and unfortunately those lofty standards of old were not maintained by the ACE of today. It came as no surprise to me that they did not win the new tender.
But still it is sad … ACE were an institution. They were trend setters. They delivered the initial NRS and they were established and run, at least initially, by Deaf people. They lobbied for, eventually tendered for and won the original NRS tender. They delivered a top quality service where consumers were at the forefront. More importantly, from my point of view, as an employer they employed people with disabilities. True, most of them were deaf but they did not just employ them they provided them with opportunities in management. These people with disabilities led the organisation and because they had walked the talk they ensured that the services that were delivered responded to the needs of the consumers. We are never likely to ever see the likes of it again.
Something unravelled after 2005. I do not know what. I suspect that there was pressure from the Government for change and the leaders at the time stood up to the Government and said NO! They tried to maintain a model that was working well. Why fix what is not broken? In fact, I am told, they had case reserves of some $14 million dollars.
Then change came. The deaf and disabled staff were systematically laid off and replaced, no doubt, by accountants that had no feel for the community. From that point onwards ACE and the NRS, in my view, went down hill to the present shambles that it currently is. I am told that the $14 million cash reserves have been virtually whittled away to nothing.
In 1999 I became manager of an innovative new program. It was Australia’s first ever mentor program for young deaf people. I was charged with developing the service model, setting up the office and recruiting the staff. Unashamedly I wanted it to be like ACE. I wanted people with a disability to be at the forefront. At one stage the program had four full time staff. All who had a disability, including me its manager.
We also had a pool of trained and paid mentors. These were casual staff, 30 of them who were all either deaf or blind. Yes blind, because so successful was the initial program that the Government expanded it to include young people who were blind as well. ( I am deliberately leaving out terms like hearing impaired, vision impaired etc – just for the narrative. So any sensitive petals out there that like PC terms, do calm down.)
I was proud of the program. It was the first of its kind. Its aims were to provide young people who were deaf or blind with tools for life, We called these Deaf Life Skills or Blind Life Skills. The program was mentioned as best practice at the World Mental Health Conferences for the Deaf in 2000 in Denmark. Like ACE the program was systematically dismantled by Ablebods that thought that they knew better but in reality knew next to nothing.
But still I am proud. It was a program for people with a disability, developed by people with a disability and administered by people with a disability. Not unlike ACE. They were heady days. Like ACE the program is no more. The services we developed are still around but delivered sporadically and with little purpose. A little bit like the original NRS. A world class program destroyed by people who thought that they knew better but ultimately knew very little.
We still have the NRS. We have a new provider. Let’s give them a chance. I am told they have a smaller budget to deliver. I am told there is no consultative committee to hold them to account. I am told that budget cuts will mean the 24/7 service is under threat. With a smaller budget the new provider have to provide, supposedly, what is being provided now. Voice to text, text to voice, Video relay, SMS relay, Voice to Voice relay, captioned relay calls, IP relay calls and the like. No doubt they will have to employ new managers, new relay officers, develop promotions and accessible information. Basically they are starting from scratch with less. And worse, with seemingly no consumer voice or input.
Yup, I am worried. Proof will be in the pudding. Who knows? They may surprise us all. Here is hoping it’s not an Almost Demise
Well the election has been and gone. All of us, even the most ardent Coalition voters, were shocked at the result. I mean even the smarmy Sco Mo, who is our new Prime Minister, called it a miracle. The scary thing was the shift to the far right with a 3% swing towards One Nation. An increase in the vote for a racist and Xenophobic party even though its members were caught dealing with the gun lobby in America to get donations. That’s scary indeed. The result is what it is, but what did Deaf and hard of hearing people get out of it.
Well nothing really. Apart from what they are already getting from the NDIS. Depending on who you are the NDIS is either a godsend or the worst since, well ever. But there is no doubt that many Deaf and hard of hearing people are benefitting from the NDIS. It is just not plain sailing for some. And if you are Deaf or hard of hearing and aged over 65 well your net gain from the last election or even the NDIS was zilch.
In Australia Deaf and hard of hearing people are represented by horrendously underfunded advocacy groups. Our national advocacy groups are Deaf Australia and Deafness Forum. Both organisations, never that well funded, had their funding cut by the current Coalition Government. It is not likely that this will change anytime soon.
Given the circumstances these two organisations are doing a very fine job. You may not agree with their approach but with the limited resources that they have they have continued to hammer away.
In recent years, apart from the NDIS, there has been very little net gain for people who are Deaf and hard of hearing. Whether it is access to health, education, theatre, cinemas or general services.
Auslan Stage Left and Sweeney interpreting are giving Auslan users some great access to blockbuster theatre and even some smaller productions. But this is from the efforts of individuals and not the Government. Perhaps the Universal Hearing Screening for babies was a win, but even that was some time ago.
Leaving out the NDIS, the last big-ticket items for Deaf and hard of hearing were probably the National Auslan Booking Service and improvements to JobAccess funding via work place modifications and the Auslan for Employment Scheme.
The latter was initially a bit of a joke as it was a once off $5 000 a year. It is now $6 000 every year. This is still inadequate especially if you are working as a Deaf professional where you must have regular meetings. It is worse if you are in a regional area as it is a flat rate of $6 000 and does not incorporate extra costs for travel.
The National Auslan Booking Service (NABS) has served Deaf Australians well. If you are on the NDIS this will now pay for your private medical appointments where NABS used to.
NABS was a great initiative of the Howard government. The Howard Government should also take great credit for kick starting improvements to JobAccess too. I reckon elements of the old Howard Government were more socialist than even todays Labor Party is supposed to be.
But anyway, these two initiatives seem to have been the last great achievements, barring the NDIS. In the election just gone neither party seemed to be offering anything for disability apart from the NDIS. They both seem to think that the NDIS is enough on its own.
Of course, it is not. There is much that needs to happen including improvements to infrastructure, health, education, services and the like. Neither the Coalition nor the Labor party presented anything much in regards to Deaf, hard of hearing or disability. At least as far as I could see anyway. This is a worry.
This is not helped by our underfunded advocacy groups that are limited in what they can do. Deaf Australia appears to have been most active in the National Relay Service (NRS) space. The NRS continues to disintegrate in both quality and responsiveness. It is not uncommon to be waiting for 10 to 15 minutes for a relay officer and then the whole system just drops out and you must call again. Deaf Australia have also been active in raising issues of problems with the NDIS. We should be thankful for that.
Deafness Forum’s big ticket item has been to promote Hearing Health as one of Australia’s national health priorities. President, David Brady, often appears to be a one-man band. He is on Facebook and social media promoting the hearing health campaign to the hilt. The great thing is that he makes most of his material accessible with both Auslan and captioning. I am not sure what the Deafness Forum CEO does because we only ever hear from Mr Brady.
My praise of Deafness Forum ends there. Sadly, I think their 22 point hearing health campaign is horribly biased. It has a good focus on Aboriginal and Torres Strait Islander needs in terms of prevention and health. It has a very heavy focus on hearing, audiology and prevention. Auslan gets a mention,almost as an afterthought, in two points. One to address interpreter shortages and two to address a provision of interpreting for professional services.
I believe the scope of the 22 principles are far too narrow. Issues with health and communication do not end with Auslan. Indeed, most people with a hearing loss do not use Auslan and little focus is given to their communication support needs. It is a truism that at entry point for emergency and mental health that the system lets Deaf and hard of hearing people down badly. No thought is given to communication needs, whether it be through captioning, Auslan interpreting or other technological means.
The danger here is that misdiagnosis will happen. Stress for Deaf and hard of hearing people in hospitals and mental health response areas is enormously high because they do not know what is happening or what is being discussed. Worse, doctors may not get important information for diagnosis. For this reason the area of communication support, in whatever form it may take, is crucial. Deafness Forum have missed the boat on that one.
Further, the heavy focus on hearing has meant many areas that impact on the health of people who are Deaf and hard of hearing have been missed. Communication, language development, family support, access to services, social isolation, employment and so on. These all contribute to the health/wellbeing, or lack of, for people who are Deaf or hard of hearing. None of these areas are addressed in any detail. Hearing health cannot just be about hearing and prevention of hearing loss.
I think Deafness Forum need go back to the drawing board on this one. The focus of their 22 points has missed too much and seems to be largely hoping for a quick fix. I know that it is hard with limited resources but the 22 points presented miss the mark by a long way.
My other big beef with Deafness Forum is that their website screams that hearing loss costs Australia $15 billion a year. Let me say this, without reservation, painting hearing loss as a cost and a burden to Australia does all Deaf and hard of hearing people a grave disservice. Apart from that it is absolute poppycock.
Hearing loss is a thriving industry. It provides employment through technology and services for thousands of people. We have the mighty Cochlear company, wealthy and prosperous. It is one of Australia’s great pride and joys. We have audiologist, speech therapist, teachers of the deaf, technicians, captioners and interpreters who all owe their living to people with a hearing loss. These people provide a return for that $15 billion that is never calculated. They buy houses, cars, food, goods and services that would not be possible if people with a hearing loss did not exist.
More importantly the $15 billion is an investment in Deaf and hard of hearing Australians. It allows them to work, be educated, play and, in short, add value to Australia. The days that we call people with a disability a COST are long gone unless you work for a Murdoch rag.
I implore Deafness Forum to take that rubbish statement down – It is offensive to each and every Deaf and hard of hearing person in Australia. Some may see my criticism as harsh but that’s as I see it. I hope that by raising these points Deafness Forum can rethink how to present our issues so that it is relavent to us and consider the inherent dignity of people who are Deaf and hard of hearing.
So, there we have it. Election 2019 offered nothing for Deaf and hard of hearing Australians. Whatever side of politics you go for this was the case. Our Advocacy groups have worked and campaigned hard with limited resources and for minimal gain. We deserve better. We have three years before the next election, let’s hope it gets better and we can have more wins like NABS and the National Relay Service moving forward.
Don’t hold your breath because if Labor are to be believed the Coalition are the party of CUTS CUTS CUTS – But they all lie don’t they?