Opinion

bellyLast Friday in The Age Newspaper there was a candid interview with the president of the Australian Human Rights Commission, Gillian Triggs[1]. In the interview Ms Triggs commented on many important human rights issues ranging from racism to asylum seekers. She pulled no punches. She also revealed that she gave birth to a profoundly disabled daughter, Victoria. Her daughter was born with Edwards Syndrome, which is a very rare chromosomal disorder. In Triggs words Victoria had been born, as severely retarded as anyone who is still alive can be.”

Shockingly when Victoria was born doctors advised Triggs that she should, Leave her in the corner and she’ll die.” If this is not shocking enough Triggs admits that when she looked at her daughter she thought to herself, “Well, you’re going to die, so I’m not going to invest too much in you.”

But Victoria did not die. Said Triggs of Victoria, “She had this inner rod of determination and simply refused to die.” After six months Triggs took Victoria home. The Uniting Church assisted her to find a family to care for Victoria. Putting Victoria into the care of another family caused conflicting emotions in Triggs.  Triggs explains it in this way, “ …because you have a child and you expect to look after her. But in the end I simply made the judgment that I would rather put my time into my other children and family, because I never believed she would live to that age.” Triggs daughter died at the age of 21 and she is very grateful to the family that cared for her.

Triggs candidness has shocked many in the disability sector. I am a pro-life person; I believe every person with a disability deserves to live. I believe it is no ones business to play judge and jury about the quality of someones life. Even so I can only imagine the horror that Trggs must have experienced when the doctors advised her to leave Victoria to die.

At the time one can imagine that this was Triggs first REAL experience of disability. She may have seen people with a disability on the street and she may have even known people with a disability but most likely Victoria was the first time that she had ever had to confront disability personally. But it was not just disability that she would have had to confront. She would have had to confront some of the severe abnormalities that Edwards Syndrome causes and some of these can only be described as horrific. In such circumstances all she could have done is to rely on the advice of experts, in this case the doctors. The advice they were giving her was to let Victoria die. It must have been traumatic to the extreme.

Victoria did not die. She lived against all odds for a further 21 years. In the time before Triggs took Victoria home from hospital it is quite obvious that she was preparing for her to die. People cope with these situations as best they can. Triggs seems to have tried to be detached and wanting to bond with her daughter as little as possible. It might sound inhumane but given the circumstances and the advice from doctors it is entirely understandable.

One can only guess the emotions that Triggs must have felt when she finally took Victoria home. Having tried to prepare herself for the death of her daughter, and having been advised that this was inevitable, she now found herself confronted with a lifetime of providing care to her profoundly disabled daughter. Not only was Victoria profoundly disabled she would have also had a myriad of other severe health problems.

It would naturally be daunting. She was clearly conflicted. She would have been thinking about her established legal career, would she have to give it up? She would have been thinking about her other children. What attention could she have given them if she was caring for Victoria around the clock? What of her husband and her relationship with him? Would it survive?

It is easy to get on ones high horse decry that Victoria is a living human being who should be treated with dignity. In any case I believe that she was. Sometimes we forget that the parents are living human beings too. Dealing with a situation where you are confronted with a lifetime of care for a child with a disability is daunting and traumatic. Each individual will respond differently. Some will throw themselves head first into the care of their child with a disability. Others, like Triggs, will make decisions based one all factors in their life, particularly the other family members who will be impacted.

Triggs chose to give up her child to the care of another family. She has also told her story in what some may describe as a politically incorrect way. She should not be judged for that. The decision would not have been easy. It’s so easy for us to be shocked by the detached and seemingly emotionless way Triggs tells the story. It’s so easy for us to be shocked by her use of words such as retarded. But all of this happened a long time ago.  Perhaps this business like and detached way that she tells the story is just her way of dealing with what would have been a very difficult time in her life.

Triggs is not alone in her experience. There are many, many other parents who have experienced what she has. There are many who will have made similar decisions to give up their child to the care of others. They do so with the best of intentions for the child and everyone in their lives. Triggs was perhaps a victim of the times and circumstances. Who knows if she would have been advised or reacted differently in todays enlightened age.

As shocking as her story and her method of telling it is, she deserves our empathy, not our judgment.

Getting Informed … My Cochlear Implant Journey.

imageIt’s been said many a time that I am a wimp. No argument from me. Particularly so when it comes to Doctors. Needles and being pushed and prodded are not my thing. Mind you I am not on the same level as my son Aden who once, when needing to be jabbed with a needle, screamed so loudly and panicked in such a way that the Doctors simply gave up. Tell a lie … I did that once at the Dentist when I was 7. I still have immense satisfaction of the pain that I must have caused the dentist when I bit his finger. My dislike of Doctors has meant I stalled in making the appointment to be referred for a cochlear implant assessment. Today I made that call.

My fear of all things medical is not helped by the fact that I have subscribed to the Facebook page – Cochlear Implant Experiences. Now I recommend this page to absolutely anyone who is considering an implant. It gives a wealth of information about the experience of having a cochlear implant. Most of it is good but every now and then someone makes a comment that scares the BeJaysus out of medical wimps like me.

There was the comment about the watery eye. Apparently some fellow who had had the implant said he woke up from the surgery with a watery eye. He mentioned it to the Doctor who thought nothing of it. When his eye waters he rubs it, this no doubt makes it worse. The fellow is asking contributors to the page whether they have experienced the same. At the time of writing he had not received any responses. I’ve added his experience to the growing list of questions I am going to ask the Doctor once I get in for my assessment.

Then there was another comment about post surgery pain. Some poor fellow was on Vidicin for a few weeks and now cannot sleep. The word pain sent me into a cold sweat. The responses were not to encouraging for a wimp like me. Nonchalantly one person responded that her pain lasted three to four weeks and that such pain is quite normal. “Take it easy”, she advises. Pain and duration is another question I have added to my list.

Then of course there are personal experiences. One of the reasons I am considering an implant is because I miss music. I have a memory of sound and I have phantom music in my head all the time. My three lads will attest to this cos on the weekend I was forever singing along to the phantom music. Chrissy Amphlett of the Divinyls died last week so currently the phantom music is old Diviynls songs. All weekend I have been singing – “LOVER, LOVER, WHY DO YOU PUSH, WHY DO YOU PUSH, WHY DO YOU PUSH, BABY, BABY, DID YOU FORGET ABOUT ME …” in what I consider my best Chrissy impersonation. I reckon all I would need is her famous sailor dress and suspenders and I would really look the part. My lads beg to differ.

But anyway one of the comments on the Cochlear Implant Experience page relates to music and how people with a cochlear implant experience it. This is where it becomes interesting. You will find that with a cochlear implant that speech perception is excellent in quiet settings. Despite this it is apparent that the cochlear implant has its limits with music. For example cochlear implant helps get rhythm but not timbre and melodies. Personal comments show varying degrees of enjoyment of music. One person commented that their taste for music changed and to understand the lyrics they needed to have a copy of the lyrics at first while listening. One thing is clear that to enjoy music with a cochlear implant takes a bit of work – “A labour of love.” as one person put it. Perception of music and strategies that can enhance it is another question I have added to the list.

The other comment that intrigued me was the one relating to whether or not one should have two implants. Apparently some people are advising against it because of developments in restoring hearing through growing inner ear hair cells. One does not know exactly how far down the track this might be and there is an argument that having two implants is beneficial. For example having two done reduces rehab and can make mapping easier if the implants occur close together. Apparently adapting to two can be difficult depending on the time between implants. So many scenarios and so many questions. The one vs two question and the developments in inner ear hair cell growth will be top of my list of questions to ask.

Then there was the totally bizarre comment that one person woke up from surgery and everything tasted like metal??? The person making the post wanted to know how long that would last. Apparently it can go on for as long as two years but eventually goes away. Another said that everything taste of soap! It is clear that this is a temporary thing that varies from person to person that “takes as long as it takes..” to get better. Last night I cooked the most wonderful Rhubarb and Apple Crumble. The thought of something as marvelous as this tasting like metal – EWWWWWWW – Another question to ask the good Doctor.

I guess I am fortunate  because there are more than 100 000 people with cochlear implants globally today. This means that there is a wealth of information out there that can help me to make my decision. It pays to get informed and I am doing my best to make sure that I am. It is human nature to perhaps get engrossed in the negative but nevertheless by the time I get assessed I intend to have a virtual book load of questions to ask.

For those that are wondering, today the 29th April 2013, I have an appointment with the Doctor to set up my referral for an assessment. So stay tuned as I update you all on the progress of my journey.

Careful What You Wish For!

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Most of my life I have voted Labor. When I have not voted Labor I have voted Democrats or Donkey. The first time I voted in the South Australian Elections I was just 18 years old. I distinctly recall voting for the Marihuana Party in the Upper House, just for fun. If memory serves me right the Upper House in the South Australian parliament is the equivalent to the senate.

Looking back I can’t really say why I am a Labor man except that I was brought up in the distinctly working class suburb of Para Hills in the northern suburbs of Adelaide. My dad worked at Holdens and he was also a window cleaner before finishing up as an “Environmental Officer” at the Adelaide Casino. An “Environmental Officer” is a fancy title for a cleaner. My mother for most of her working life was  a base grade clerk and data processor. So my background is really working class. But this is no real reason to vote Labor. I mean lots of my friends have the same background and vote Liberals.

Recently I have been thinking hard about my ideologies. I started wondering why we vote for who we do. I mean I have heard people wax lyrical about Liberals being for the economy and business. Die hard Labor supporters will tell you that they believe in the equal distribution of wealth. We are all fond of spouting the party line but what do the respective Party’s actually stand for?

I asked Google. I typed in  – “What is the difference between the Labor and Liberal Party? ” The only coherent answer that I could find was at Yahoo Answers. A subscriber had asked the same question and received an answer. The answer was almost flippant, “The Liberal party tends to focus on the economy, getting the dollar strong, saving up, and creating assets.  The Labour party tend to focus on spending the money that Liberal has saved up, putting it back into the country (hospitals, police force, and whatever else the population wants to see more of.”  But to be fair the answer also noted that both parties had their role to play because, “They both play their part, because the Liberals possibly neglect some of the things that people want, where as Labour may overindulge a bit and overspend, putting interest rates far too high.”[1]

I was not really satisfied with this answer because to me it made no sense. For example despite the common views that interest rates are higher under Labor than the Liberals, interest rates are actually lower today than they were under the Liberals. So I kept searching but I really could not get anything that went past Liberal’s focus on economic and Labor’s focus on social issues.

The other stock answer was that Liberals were conservative and seek to maintain traditions whilst Labor is more into radical social reform. This may well have been the case under Gough Whitlam and Malcolm Fraser but it certainly is not today. Just ask Malcolm Turnbull who wants to abolish the Monarchy. In fact I would argue that both Liberal and Labor are virtual carbon copies of each other.

Let’s look at the commonly held view that Labor are spendthrifts. I seem to recall towards the end of their time in power Howard and Costello were throwing Money around like it was confetti. They gave everyone $1000 and said go forth and spend. They introduced the $4000 baby bonus and said go forth and multiply. They gave carers $1000 each every year. For three years they provided parents with $600 per child. Just for the Deaf they provided $18 million for the National Auslan Booking Scheme. They also planted the seeds for the Auslan for Employment Scheme, which was a real shocker when it started. They increased spending on Workplace Modifications and planted the seeds for the JobAccess program. They introduced the first home buyer’s grant. The latter stimulated the housing market so much that virtually no one can afford a house anymore.

Of course the current Labor Government has thrown money about too. There is the famous and much criticised ‘School Halls’ and ‘Pink Batts’ programs. Just this morning Gillard was saying how they had channelled $5 billion towards improvements in the Bruce Highway. They have provided a $1 billion for the NDIS. They allocated $43 billion for the National Broadband Network. Billions of dollars has been allocated for Gonskis subject to the States cooperating. Labor certainly have not sat on their hands either.

I am trying to work out the difference between the two Parties and to me there is none. Howard and Costello threw money around because they wanted people to spend it and therefore stimulate the economy. The First home Buyer’s Grant was designed to stimulate the housing market and create jobs. School Halls and Pink Batts and investments in the things like the Bruce Highway had a similar goal. This Government’s spending has been targeted towards stimulating the economy, keeping jobs ticking over and providing opportunities for Australian business. To me it seems like horses for courses but the philosophies of spending from the two Parties are essentially the same.

Of course Liberal supporters will tell you the economy was going better under them. But was it? Economists the world over are full of praise for how Labor handled the Global Financial Crisis. They are in awe that the economy has grown for the 21st successive year.  (That’s 21 years in which both Liberal and Labor have ruled at various times.) Unemployment came down under the Liberals as did Inflation. Labor has kept it low with any increases being minimal. Critics will point out that School Halls and Pink Batts were ill thought out and poorly run. But so was the First Home Buyer’s Grant – The Housing Boom was such that few people can now afford houses.  Australia used to have the most affordable hosing in the world.

Then of course there is the view that Labor is anti-business and is involved in class warfare. But is it? Funding to private schools has increased under Labor for example. The Mining Tax was a war on the wealthy they say, taking from the rich to cover up Labor’s bad financial management. But let’s look at the Liberals paid maternity leave scheme. How will it be funded? Through a levy on business that’s how. Both policies seem to be taxing business to raise revenue for programs. Where is the difference?

But Labor lie people say. Gillard promised no Carbon Tax. Yes and Howard promised no GST. But Carbon Tax will cost jobs they say. There is no evidence that this will or has been the case. Indeed it was suggested that the GST would do the same thing and would discourage retail spending. It did nothing of the sort. What is more interesting is that the GST was first proposed by Keating under a Labor Government. [2]

What about the furphy that Liberals uphold traditional values and retain traditional institutions? Well certainly if same-sex marriage is anything to go by it seems that both Parties have married each other. The Boats – Labor can’t stop them they say – Did the Liberals actually ever do so? Remember Tampa? It seems to me that the policies of each party in regard to the Boats are just as inhumane as the other.

Do not be fooled. Party philosophies mean nothing to those seeking power. This is not to say that our politicians do not have their own ideologies, they do, but their primary concern is to get or retain power. What this means is that the politics that they use are often pragmatic. They do what is required rather than following a strict ideological pathway.

Of course doing what is required often means always disagreeing with your opponents to make them look bad, even when policies are good. Often it means highlighting the purely negative side of everything the opponents do rather than focusing on what the issues are. Often it means over simplifying things too. For examples the Liberals will tell you that Labor is SPENDING too much. Yet the International Monetary Fund has stated officially that the Howard Government was the most profligate government in 200 years and squandered much of Australia’s savings on quick fixes.[3]

The Liberals will have us all believe that the Labor Government has sent Australia into a period of unmanageable debt. Yet international figures will show that Australia’s public debt is low and easily manageable in comparison to other countries.[4] But the Liberals will oversimplify things and say Australia has debt and that this is a bad thing. They will not even consider the impact of the Global Financial Crisis because in doing so it will highlight how skilfully Labor managed it.  It’s all about the pragmatics of getting into power. Just say what you need to.

Labor are not innocent of this either. They will claim the Liberals have no policies and no costings. This may well be true but they will neglect to tell you that they refuse to provide accurate budget figures to the opposition to allow them to cost their policies properly. That famous misogynist speech of Julia Gillard was arguably nothing more than a dirty tactic to distract people from the real issue. This issue of course was that Labor had appointed the rather slimy Peter Slipper to the Speakers role for the sole purpose giving the Liberals one less vote in Parliament. It is all about pragmatics you see – The truth doesn’t matter.

This year when you vote make sure that you are equally pragmatic. Look hard at what is on offer and BE CAREFUL WHAT YOU WISH FOR.

SHORTS – The NBN and You!

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In Australian politics the public are constantly treated like morons and fed dumbed down rhetoric by our political parties. I’m gonna Stop the Boats” says Tony. How is not quite clear. “JULIAR” scream the Liberals as they play the person and not the ball. Similarly anything worthwhile that the Liberals may have to offer is lost in accusations that Tony Abbott is a misogynist or that Sophie Mirabella slept her way to the top. Informed, constructive and intelligent debate on policy rarely occurs.

Because we cannot rely on our political parties to provide us with informed political debate The Rebuttal has decided to take things into its own hands. Over the next few months articles will be produced to explore some of the major policy platforms being presented by our political parties. We cannot promise not to show bias but what we hope is that these articles will at least help the reader be better informed and more importantly encourage debate and discussion.

This article will focus on the National Broadband Network (NBN). Australia is on the cusp of being the envy of the world with its National Broadband Network. Through an NBN information will be shared faster. Doctors will be able to consult with you in your living room through your computer.  Did you know that you can test your blood sugar levels and have this analysed over the internet? The NBN will allow this to be done within seconds.  A one gigabyte movie will be downloaded in 8 seconds rather than an hour. Kids that cannot access good education because of remoteness will now have access to classrooms almost anywhere in Australia. The benefits of an NBN will be immense.

Once the NBN is up and running Internet speeds will be awesome. Those that already have the NBN will tell you that it is brilliant. In a country like Australia, where distance is a killer, fast Internet is a must. Just for the Deaf, for example, they will be able to access an Auslan interpreter virtually anywhere and the picture will be movie quality. In the future many interpreters will be based at a computer. This will lead to a reduction in costs that are involved with travel. Time lost in travel will be reduced meaning that more time will be available to actually interpret. This will mean that issues relating to demand and supply of interpreters will be less of a problem. Travelling 600 kms for support for things like speech therapy might be a thing of the past because the NBN might allow this to happen effectively through ones computer.

An article at the website Computer world[1] discusses the economic benefits of the NBN. This article points out that whatever outlay the Government makes to the NBN is likely to be offset by indirect benefits to the economy. In essence by investing in a world leading NBN Australia cannot lose. Indeed in this article it quotes the World Bank’s lead ICT policy specialist, Dr Tim Kelly who said. “….. the broader, intangible benefits of investment in broadband mean that it is rarely, if ever, a bad investment”

The Liberals have come up with an alternative policy. This policy is based on what they believe is the minimum that Australians “need”. Rather than having the best and fastest they are scaling it down to what they believe we NEED. They say that their policy will be $20 billion less. In fact in the long term the Liberal policy of connecting fibre to homes through existing copper networks will cost more. Not only will it actually cost more but the speeds will be slower. Labor policy is for 93% of homes to have full fibre connections. Experts almost as one support Labors plan. The simple explanation is that fibre allows for faster internet speeds and will costs less to maintain. The copper network that we currently have requires constant upgrading and maintenance which will mean greater costs in the long run. Simply put, invest in fibre now save later. Paul Buddle points this out at his Blog, the Buddleblog[2] when he states, …. a short-term saving might result in long-term higher costs and, over time, an obsolete infrastructure that needs to be overhauled by fibre anyway.”

Polls show that 78% of Australians support the NBN. BUT it appears Australians want Labor out. The latest Polls show slight gains by Labor. Despite these gains 55% of Australians would vote Liberal rather than Labor.[3] The NBN will bring enormous benefits to the country. Clearly the public want an NBN. Yet strangely they are hovering over the metaphorical DELETE button ready to send Labor to oblivion.

If you want an NBN think hard before you vote.

Back to Square One!!

headmirrorSo I did it! After three days of having the phone number minimised at the bottom of the computer screen I called the Cochlear Implant Clinic to find out the status of my referral. I rang through the National Relay Service and spent the mandatory five minutes navigating through the pre-recorded answering machine. Eventually I ascertained that I needed to dial zero, which is for OTHER. Unsurprisingly, given the time lapse between now and the actual referrals, they had  no record whatsoever of my two referrals. So now I gotta go through the whole process of getting a referral again.

So I thought I would get clever. I rang the original referring Doctor and asked if he could seek out the referral that he was supposed to have sent. This was preferable for me because I didn’t want to go through the mundane and costly process of assessment and hearing test again. I know that such a process would only come to one conclusion – that I was very, very deaf. This line of enquiry led to a dead end too because the receptionist said that they had no record of me. They asked if I was sure it was the good Doctor I had seen. I said,  “…Yes he  has a very unique name, not a Smith or Brown or something like that.. “

My attempt at humour led nowhere. Rather confused they tried to indicate that I must have been seen at the hospital. I told them that I was seen at the surgery. I even clearly described to them their hearing test booth, its colour and its size. But still they insisted that I had never been there and that there was no record of me. I pointed out that they are supposed to keep records for seven years to which they said, “…Best see your GP for another referral.”  They then promptly hung up on me. Footnote to self – Humour and legal references will get me nowhere.

I really am not looking forward to having to go through this process again. But one must do what one must do. The last time I visited the good Doctor I asked him to look at cleaning out my middle ear. I have had this done before and it usually provides me with a measure of hearing that is useable with a hearing aid. The good Doctor did not even acknowledge my request, which is sadly a common occurrence with Doctors in my experience. He instead sent me to his in-house audiologist for a hearing test.

The audiologist wasn’t a particularly good listener either. I tried to explain to her what the test was likely to indicate.  Like the good Doctor she did not even acknowledge the information that I was providing her.  In her defence she probably gets any matter of opinions from her clients and has probably become a bit immune to the needless natter. I told the audiologist that what she would get was basically a flat line. She just ushered me into the booth.

So I sat there in the booth. The audiologist came and set me up. Of course she had to explain to me that I needed to press the button if I heard anything. It was only my one thousandth hearing test but she wasn’t to know that was she? I knew when she had cranked it up real loud because I could feel the vibration in the headset. For me to indicate that I had heard when in fact I had felt the vibration would have been misleading. So I sat there with button untouched.

The poor Audiologist was somewhat bemused. She opened the booth door to check on me. She must have thought I had died or something, so unresponsive was I. She left to twiddle the knob some more and came back to look at me. I was still unmoved. As her head poked round the door again I gave her a little smile. It may have just been my imagination but her eyes seemed as wide as an owls, such was her shock.

After ten minutes or so she brought the test to an end. She looked almost as white as a ghost. I reassured her that it was ok. I told her there was nothing to worry about and that the result was not unexpected. She fiddled around a bit and said the Doctor would explain the results to me. She could not meet my eyes. It was a huge effort on my part not to burst out laughing at her reaction.

So I went back to the Doctor who looked at the results and then back to me. I said,   “Pretty neat huh?”  He gave me a wry smile and said, “… that’s one way of looking at it.” I tried one more time to get him to consider having a look inside to see if a clean out might help but he was having nothing of it. He made the referral to the Eye and Ear Hospital. He said that the specialists there might be able to recommend some, “Aided hearing strategies” to help me. “You mean a Cochlear Implant?” I asked. He acknowledged that as one such solution.

But anyway that was a few years ago now. It is history that I have decided to get serious about assessment for a cochlear implant. Alas I have left it a wee bit late and have to go back to square one and get another referral. So square one it is.

Let’s see where it goes from here. Stay tuned for the next instalment.

IT’S TIME!

imageIt’s been a kind of eventful week. North Korea’s baby-faced leader, Kim Jom –Un, or whatever his name is, woke up with a headache and decided that he would give everyone else one. So incensed had be become of the continuous ache in his temples that he has decided to nuke everything that moves. Then of course Margaret Thatcher died. Thatcher was always a figure that polarised people. For all the good she did for Britain there are people that will always hate her hardline policies. Love her or loathe her, the woman had an impact that few people can hope to have in their life time. You don’t make enemies if you don’t stand for something as they say. It seems Gina died in Home and Away too and the dramas continue on My Kitchen Rules. Stop the world! I want to get off.

I am not sure why but Thatcher’s death made me take stock. I grew up in her era. She was coming to prominence just as I was becoming deaf. Around the same time my hearing loss was becoming an issue she became leader of the Conservatives in Britain. She replaced the much lampooned Edward Heath.

In 1975 my parents had somehow managed to save up enough money to take us all to England for a holiday. As Maggie was coming to power I was in England and coming to the realisation that losing ones hearing meant something and it wasn’t good. I recall my mother constantly telling me to say “Beg Your Pardon” rather than my customary “WHAT” as I struggled to understand the thick cockney accents that my mothers, and especially my fathers, family spoke with. It was even worst when we visited friends in Yorkshire.  The accents didn’t help but the reality was that this was the beginning of the steep spiral in my hearing.

But anyway as Maggie rose to power my audiogram arrows went in the opposite direction. They have continued to go in the opposite direction ever since to the point that I now hear about as much as Maggie can even though she is dead. I don’t wish to mock the dead; I only wish to point out that I have become very, very, very deaf.

Alas, at the time of Maggie’s death I have been profoundly deaf for 38 years. I had a more minor hearing loss before that but the real decline can perhaps be linked back to around 74 or 75. So Maggie’s life changing event of becoming leader of the Conservatives coincided with my own challenging event of becoming deaf.

Maggie becoming the Conservatives leader, and eventually the PM, brought with it both rewards and heartache. Some of her colleagues, for example, were assassinated by the IRA. She was in the Brighton Hotel when the IRA bomb went off killing several of her colleagues. A few years before that she apparently had just said goodbye to her closest advisor as he drove out of a car park.  Seconds later his car blew up courtesy of another IRA bomb. Of course she also made some tough decisions, some would say even cruel. These decisions meant that she copped a lot of abuse that has continued even after her death.

It was not all a bed of roses but she must have had a sense of immense pride as the British economy slowly turned around under her leadership. She had a particularly strong influence on the fall of Communism and the Berlin wall. These were heady and enthralling political times and Maggie was one of the key political figures of those times.

It seems trite that I should compare being Deaf with being one of the major leaders of the Western world but being Deaf has brought with it both rewards and heartache too. It’s isolating and frustrating. Opportunities are missed. Simple pleasures that I once enjoyed like music are now denied me. Some times it’s so frustrating I just scream.

But the rewards have been many. I have friends in the deafness and disability areas from all over the world. It has been my career and has taken me to many interesting and diverse places. I have met Prime Ministers and famous people. I have been able to experience the richness of the Deaf community. Indeed I met my wife through the Deaf community at, of all places, my front door. Despite my deafness life has been good.

It’s funny how life works. On Saturday I woke up and there was a cochlear implant processor magnetised to my fridge door. The processors of cochlear implantees stay on their heads through a magnet that attaches itself to the thingy that has been inserted in their head.. A friend who has a cochlear implant was staying overnight. For reasons known only to her she decided to stick her processor on the fridge door. Then Maggie died making me reflect back to 1975 when she came into power. This was also the time when my hearing loss became a real issue. And then it hit me, to paraphrase Gough Whitlam, IT’S TIME!

After being deaf for 38 years, the last ten of those not being able to hear a sound, it hit me that it was seriously time for me to do something about getting a cochlear implant. I have been referred twice. The first time in 2005 was by my own Ears Nose and Throat specialist. This referral came to nothing. The second time was by my sons Ear Nose and Throat specialist who, realising that I was deaf, took my details and referred me to the Royal Victorian Eye and Ear hospital. It is worth noting that she did this without checking I was ok with it. Rather comically this referral appeared on my son’s case notes. There was a footnote at the bottom … Finlay’s father, Mr Kerridge, was referred to the Royal Victorian Ear and Eye hospital for assessment for suitability for a cochlear implant …. I kid you not. But these two referrals led to nothing.

The recent death of Maggie made me reflect on my life. Of course my mind being what it is went on a journey down memory lane and somehow linked Maggie’s death to the cochlear implant processor that my friend had magnetised to my fridge. There could only be one conclusion – It was time!

I am one of those that has a memory of sound and indeed I think in sound. I am most likely well suited to a cochlear implant. So I have made the decision to move on with it and see what is possible. On my computer screen, minimised at the bottom, is the phone number of the Royal Victorian Eye and Ear Hospital. Shortly I will ring it and set the train in motion.  Hopefully I can find out what happened to my referrals and set myself up with an assessment.

All going well I will make this adventure to getting a cochlear implant into a series for The Rebuttal. It should be interesting indeed!

Keep reading for the next installment.

Shorts – DisabilityCare Australia – The end of the NDIS road for the deaf?

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I was following some disability related discussions on Facebook today. One of these discussions related to accessible tourism. The post had a link to an article that was related to a meeting held in Canberra to discuss inclusive tourism. In the article was the mandatory photograph of a person with a wheelchair. (In fact there were two.)

Now I am not writing this to have a dig at people in wheelchairs, far from it. Rather I write this to try and highlight the narrowness of much of the policy drift in regard to people with a disability. I asked the author of the post whether it would have been worthwhile to have greater discussion in relation to accessible information and accessible events as they relate to tourism, particularly for people who are vision impaired or deaf.  His response was surprisingly supportive;

“…I absolutely agree, and by far it is the biggest disability group and the one most affected by the ageing population and the one that is most likely to be influential as consumers. We are preoccupied with physical access in this country instead of the big picture including the so called invisible disabilities.”

I was appreciative of this frank answer because a lot of the work my friend does is in relation to physical access so for him to come out and say this was refreshing. The next post I read was in relation to the NDIS.

This post was the Government waxing lyrical about the NDIS online forums and encouraging people to have their say. I found this ironic because the last big say people with a disability had about this on the forum related to their dissatisfaction with the name DisabilityCare Australia. It clearly had no impact because they were using the name proudly. In fact one might even say they were flaunting it.

More to the point – What exactly does this new name say about our Governments intent. The use of the word CARE in the name suggests that the NDIS will be about two things:

  • Being concerned for ..
  • Being under the care of ..

I use these terms loosely. They have been paraphrased from various online definitions. But it suggests that there is a power imbalance and that the NDIS will be about looking after and caring for people with a disability. This is what has upset many people with a disability because it is a negative and disempowering message.

About.Com has a page on marketing. Interestingly they had this to say about marketing. They say marketing… ” is not about getting your target market to choose you over the competition, but it is about getting your prospects to see you as the only one that provides a solution to their problem.”

So with a name like DisabilityCare it suggests that the problem is about CARE. Now what if you are deaf? Or blind? Or have a learning disability like Dyslexia? What if your solutions are about technology to empower and provide independence and facilitate inclusion? What if your issues are access to print and communication? Well CARE clearly is not going to offer any solutions is it?

So the question we need to ask is – Does the name DisabilityCare Australia spell the end of the road for the deaf and even the blind as far as the NDIS goes? Has the Government shown its hand and let us all know in a none to subtle way that the NDIS will have nothing to offer us? Think about it!

What’s in a name? It could be more than you think. Remain diligent!

SHORTS is a new feature of The Rebuttal. Short sharp articles to make the reader think. We hope you enjoy!

The Mean Machine

scroogeAustralian people are a generous people. When the chips are down they are there to help. I was reminded of this on the weekend when I visited Marysville. Marysville is a town in Victoria that was flattened by the Black Saturday Fires in 2009. It still bears the scars of that horrific day. For miles one can still see the burnt landscape and dead trees that were caused by the flames of the fire. The town itself is still rebuilding. I remember that in the aftermath of the fires the Australia public responded with kindness. It donated money, food, goods and skills. All of which helped to get devastated towns like Marysville back on their feet very, very quickly.

There are many examples of the kindness of the Australian people. I am sure Queensland will tell you that Australians as one offered overwhelming support after the numerous horrific floods and cyclones that have devastated large parts of Queensland in the last few years. It is also worth noting that on the Easter weekend that Victorians donated a whopping $16 million to the Good Friday Appeal for the Royal Children’s Hospital. There can be no doubt that Australian people have big hearts and deep pockets.

The generosity of Australian citizens cannot be questioned. There is no doubt that when the chips are down the Australian people show their true colours. But for some reason the open pockets and generosity that is shown by Australia’s citizens is not matched by corporate Australia or the Government. In fact it could be argued that the Government and corporate Australia are downright mean.

Did you know, for example, that the Australian Council of Social Services (ACOSS) has reported that there are 620 000 people with a disability living below the poverty line.[1] There are also  2010 figures provided by ACOSS in their report, Poverty in Australia, that suggest that 2,265,000 Australian’s, or 12.8% of the population, live in poverty.  If 620 000 people with a disability are part of this figure it means that more than a quarter of all people living in poverty in Australia have a disability. Surely this is Australia’s shame.

The 2003 ABS figures suggest that there are 1,238,600 Australians with a profound disability. One would be safe in making a broad assumption that most of the 620 000 people with a disability that ACOSS claim are living in poverty would have profound disabilities. Using such an assumption this means that more than 50% of people with a profound disability are living in poverty.

Is it any wonder then that Bill Shorten, the former Parliamentary Secretary of Disability, is on record as saying that a rich country like Australia can afford to support people with a disability better? Is it any wonder then that there is haste to roll out the National Disability Insurance Scheme?  It is a case of too little and too late.

That more than 50% of people with a profound disability can be assumed to be living in poverty based on accepted statistics is a national disgrace. Particularly given that Australia has had 21 years of successive economic growth. Particularly given that Australia is one of only seven countries with the vaunted AAA credit rating. It is a disgrace that Australia,  with its abundance of riches, has the highest rate of poverty among people with a disability from 27 Organisation of Economic Cooperation and Development countries.  Is it any surprise that Sir Bob Geldof has condemned Australia for cutting its foreign aid when it is one of the only few countries that has not been hit by the Global Financial Crisis.

This much is true – AUSTRALIA IS RICH. But unfortunately, unlike its citizens, its social policy does not have a deep pocket. This is particularly so in regard to people with a disability.

It is not just the Government that is mean it is also corporate Australia. Last week the Sydney Morning Herald reported that Rail Corp spent $420 000 defending itself against Graeme Innes, The Australian Human Rights Disability Commissioner[2]. Mr Innes was outraged that rather than spend money on providing audio announcements for the blind on trains Rail Corp chose to spend nearly $500 000 trying to avoid its social and cooperate responsibilities towards people with a disability. This is corporate meanness personified.

While I agree totally with Mr Innes sentiments it also points again to the weakness of Australian disability discrimination laws … The power is with those that have the money. Even if Rail Corp did lose on this occasion very few people with a disability have the means to go to court. Particularly so when more than half those with profound disabilities are living in poverty.

Then of course we have the Cinema Access fiasco that demonstrates corporate meanness at its worst. The Big 4 cinemas are not only mean, they are clueless. Not content with having provided crap access in the past they have now provided access that is even more crap. They have foisted CraptiView on the Deaf and hard of hearing public. Almost as one this public has said it was awful. Despite this feedback they have continued roll-out the device en-masse.

What is worse the increase in access that was promised was minimal. Sessions with captions using CraptiView were still largely off-peak. It has reached the point where they do not even advertise caption sessions anymore. This is forcing the Deaf and hard of hearing public to constantly have to phone or even visit cinemas to confirm whether captions are available. One poor soul travelled 45 minutes to a cinema because he could not obtain any information about captions sessions either on the internet or the phone. All he wanted to do was take his family to see The Croods. There are six deaf people in his family and there are not enough devices anyway. And these cinemas won a Human Rights Award.

The mind boggles that the cinemas are treating a potential market of 3 to 4 million with absolute contempt. So frustrated has the paying deaf customer become that they have resorted to organising private screenings and open space screenings just so that they can see a movie with captions on the screen. Of the two sessions that have been organised in Melbourne it has been virtually standing room only so popular are captions on the screen. The Big 4 Cinema response to this obvious demand has been naff all. It is the height of corporate meanness.

It is one of the great paradoxes in Australia that a country whose citizens are famous for their fair go mentality and famous for the generosity of its citizens has Government and a corporate sector that is as mean as they come. Let us be clear – Australia is rich! Let us be clear Australia has had 21 years of successive economic growth! Let us be clear Australia CAN afford to provide the access to people with disabilities so that are able to participate fully within their communities.  The NDIS is but a pimple on the bottom of what really needs to happen in this country to ensure the needs of people with a disability are met.

Perhaps the starting point is Government and corporate Australia is to be a little less mean. They need to dig deeper into their considerable pockets.