Kate Locke making acceptance speech at Australian Human Rights Awards ceremony in 2009

Do I look a little nervous? Perhaps! Not every day you have to stand up in front of 400 people to talk for 3 minutes.

Can you imagine my face when they told me I had won? I was in shock.

It was the Australian Human Rights Community Award for an Individual.

It’s a big thing for me, because when you do the sort of stuff I am doing, it’s very lonely work – you think no one notices it. You do it, not for recognition, just for trying to change things for the better.

Plus, I’ve barely won ANYTHING in my life. So this is mega epic for me.

You can actually hear the acceptance speech at the awards ceremony which was held at the Sheraton on Park in Sydney on 10 December 2009.

For all my deaf friends, I have asked them to please put up a transcript for hearing impaired people! And lo and behold, mine is the ONLY one that comes with a transcript. HAHA.

Click on the link below to hear the audio of Human Rights awards speech:

This is an important shout-out to all my Australian readers with a hearing loss.

The Australian Federal Government has launched a full Senate Inquiry into deafness!

Is there anything about having a hearing loss or being deaf that frustrates you?

  • Have you ever felt annoyed at the cost of buying – and maintaining – hearing aids and cochlear implants?
  • Have you ever been upset by the low standard of services of an audiologist?
  • Ever wished you could stay with Australian Hearing after you were 21 years old?

The Australian Federal Government want to hear from EVERYONE in Australia about what issues they face when they have to deal with a hearing loss.

They are planning on using your input to change the way hearing health is dealt with in Australia.

It is so important that you email them to let them know what it is like for YOU personally.

All you have to do is send a short email to community.affairs.sen@aph.gov.au by 9 October 2009, letting them know what frustrates you most about your hearing loss in Australia, and what you would like to change.

I have done one already. If you need help in knowing what to write, have a look here.

https://katelocke.wordpress.com/2009/10/01/submission-australian-senate-inquiry-hearing-health/

This is your chance to finally let your Government know how difficult it can be living with a hearing loss in a hearing world.

Don’t miss this chance.

30 September 2009

Re: Inquiry into Hearing Health in Australia

To the Community Affairs References Committee (community.affairs.sen@aph.gov.au):

I would like to make a submission to the Hearing Health Inquiry.

I am a deaf young professional living and working in Australia.

The current Australian hearing health system is antiquated and not working well at all – it makes being deaf in Australia very difficult and expensive.

For example:

  • my hearing loss was first discovered at age 11, and I was given hearing aids without any sort of rehabilitation or support. it took me ages to get used to them and to wear them. It was a traumatising experience as a child. I didnt wear the ones I was given at 13 until I was 18, because I hadnt been given adequate support in understanding how to use them
  • When I did start wearing them, I received free hearing aids and batteries through Australian Hearing which was fantastic, and really helped.
  • then suddenly at the age of 21, just when I was unemployed and studying full time at university, I was told I could no longer get any services through Australian Hearing
  • I had to find a private audiologist, and many that I had didnt understand my hearing loss well enough, and I bought hearing aids from each of them, when one would have been enough. Each hearing aid is about $3,500 to $4,000. I was also convinced to buy expensive additional gadgets  for up to $1,500, which I have never used, because it was not correct for my hearing loss.
  • One of my hearing aids broke and I had to buy a new one, as it was not covered under private health insurance
  • I had to get a personal loan to pay for it, and then I had to go on Centrelink payments as well, because I had trouble paying my rent.
  • I have just received my first cochlear implant. I had to take out private health insurance in order to get this over 3 years at $90 per month. None of my hearing friends pay anywhere near this amount for private health insurance.
  • I had to take out special cochlear implant insurance at $300 per year to cover my cochlear implant, when someone who has an ipod can get that covered with their home and contents insurance. I have tried to get my cochlear implant covered under home and contents, and all the big insurers refuse to cover them.
  • I’ve had to buy a special TTY phone and special Telstra HipTop mobile phone in order to communicate with people, as these are the only two I can use being a deaf person.
  • Audiologists charge huge amounts for ear moulds when you don’t need them (up to $250), and for repairs (up to $500), and for batteries (they cost me $300 a year).
  • I have been to see the Minister for Ageing about these issues, but as hearing health is under Ageing, it’s not the main part of the portfolio. Hearing health gets lost in Ageing. It needs to be put over into Health.
  • Hearing health is not an ageing issue, I am only 29 years old, it is a health issue. Many of my deaf friends are under 30 years old.

There is an essential inequity as to how hearing health is perceived as compared to other health issues, even though hearing loss is one of the most prevalent health issues in Australia.

According to the Access Economics Report, one in six Australians has some form of hearing impairment, and this is projected to increase to one in four by 2050 (from Access Economics (2006) Listen Hear – The Economic Impact and Cost of hearing loss in Australia).

I would like to see the following changes made to the way hearing health is dealt with in Australia:

  1. Hearing health should be moved out from under the Federal government Ageing portfolio, and placed under the Federal Government Health portfolio, alongside eye health. It currently does not receive the attention it deserves under the Ageing portfolio.
  2. Subsidised government services should be offered via ‘Australian Hearing’ to people between the ages of 21 and 65 if they are on a low income, unemployed, full time students, or part time students. In Australia there is currently no help for these people in affording hearing aids, implants and other hearing health services.
  3. Insurance companies should cover hearing aids and cochlear implants if they are lost or broken. Currently most insurers will cover silly things like iPods, but not a cochlear implant processor, which is $8,000 to replace, and vital for many to be able to hear.
  4. Former child clients of Australian Hearing who are not unemployed, students, or on low incomes should not be suddenly cut off from services of Australian Hearing. They should be able to pay for services to stay on at Australian Hearing with their audiologist.
  5. All hearing aids, cochlear implants and other hearing health aides should be able to be claimed as a tax deduction once someone starts work. Currently you can’t claim expensive hearing aids as a tax deduction.

Thanks for accepting my submission.

Sincerely,

Kate Locke

Back in August, I attended the Deafness Forum of Australia’s captioning awards.

It was a really exciting event – I had no idea how big, and impressively run it was. John Howard has recently become the Deafness Forum’s ambassador, so he was there at the dinner. That was a bonus.

I have some great photos below. I actually won an award. It was a total surprise – it was the Roma Wood Community Award for dedication to improving captioning and media access across DVDs, cinemas, online videos and TV in Australia.

I am very honoured to get that.

And the other reason it’s nice to win it – I tell you what – I have been making noise about the lack of captioning for so long, and it is quite depressing how little movement there is in relation to it.

It’s truly heart breaking sometimes to see how uninterested big companies are about whether or not a person with a disability can access their services.

Can you imagine what it is like to not be able to do something as simple as watch TV? When a TV station doesn’t caption its programs, that it what happens for people with a hearing loss.

It is worse for blind people – audio description is more expensive, and harder to get on different types of media.

Yes, it’s distressing to have a hearing or vision impairment! You can get very cut off from normal every day things that people take for granted.

So anyway, it was a nice change to have all the industry types in one big room, all in unanimous support of accessibility of media for deaf and hearing impaired people. (Note: A noticable absence was the ABC  – every other TV station had someone there, but the ABC declined to send anyone. That was a bit of a shock to me! I’ve always thought the ABC was the best in this respect. Obviously not.)

Check out the photos below:

Telling him about the implant: "That's right, Mr Howard, they DRILL INTO YOUR HEAD!!"

Telling him about the implant: "That's right, Mr Howard, they DRILL INTO YOUR HEAD!!"

Telling John Howard about the cochlear implant with Maureen Shelley, Daily Telegraph Journalist.

Me: "Pfft, it doesn't hurt a bit!" Mr Howard: "Riiight." (*Maureen wimpers, wipes eyes!*)

 

Another one of me telling in great detail how gory the operation was. Just kidding! We all know my surgeon, Prof da Cruz, iz da man.

Me: "Why don't you get one, Mr Howard".... Him: "Are you kidding me!!!??" (Just joking!)

Talking to all the cinema, TV, and DVD distributors after winning the community award: "You've all got to caption everything, or you're in biiiiiig trouble!"

Talking to all the cinema, TV, and DVD distributors after winning the community award: "You've all got to caption everything, or you're in biiiiiig trouble!"

Standing with Hugh and Andrew from Printacall - they sponsored the community award - thanks so much guys, you made my night.

Standing with Hugh and Andrew from Printacall - they sponsored the community award - thanks so much guys, you made my night.

I bet you are wondering what it’s like!

One word.

Bizarre.

Totally. And. Utterly. Bizarre.

Triangle percussionists have taken over my ear.

Triangle percussionists have taken over my ear.

Remember playing the ‘triangle’ at school? Well, imagine everything I am hearing translated into that sound. That is the cochlear implant for me.

As I type on the computer right now, it’s as if the keys are either triangles dinging, or perhaps one of those old 80s electronic Casio Keyboards, and every computer key is making a dinging sound. I kid you not. I am really ‘playing’ my computer.

“..Ooooooooooh…”

If I say that, it sounds like one long beep.

When I click the mouse, it is such a clear, nice, satisfying click! I bet that is going to annoy me later!!!

My new favourite words are “wheel” and “forces”. They sound TOTALLY MEGA AWESOME with a cochlear implant.

Actually, maybe another way of describing it is as if Kraftwerk had set up and was translating every sound for me.  

If you have ever heard Kraftwerk, then you will know what I am talking about when I say that it sounds like they've moved into my head.

If you have ever heard Kraftwerk, then you will know what I am talking about when I say that it sounds like they've moved into my head.

So I can hear pings and bips and bops and zings and more pings, some zoinks, robotic gings, paps, whizzes, swizzles, dongs and midges, wasps and bees.

Everything also sounds robotic. Very, very robotic.

So, should I start from the beginning?

We went to the Sydney Cochlear Implant Centre (SCIC) this morning, and it was all a bit out of the ordinary. The NSW State Minister for Health, John Della Bosca, had decided to use my switch on to launch some extra funding for the SCIC’s Adult Program.

Whoot! Extra funding! (They must have read my blog post “How much did my cochlear implant cost me?“.)

So, the Government has agreed to fund something like 15 extra implants for adults on top of the already existing 44. Might not sound like a lot to some, but when you realise that every implant will cost almost $30,000, you can see why it’s a big deal.

So, when we arrived, they had set up the ‘switch on room’ upstairs, with video cameras, so that it was beamed downstairs to the surgeons and ministerial staff, and journalists in the press conference area. Talk about pressure, man.

L-R: Rachel Stawski, John Della Bosca, journalists from the Daily Telegraph, Sharan Westcott, and my surgeon, Professor da Cruz.

L-R: Rachel Stawski, John Della Bosca, journalists from the Daily Telegraph, Sharan Westcott, and my surgeon, Professor da Cruz.

Luckily, Ben and mum were allowed upstairs to experience it with me. And I was REALLY happy that my surgeon, Professor da Cruz, was able to come. He apparently had a day full of surgeries – but managed to slip out for an hour or so in the middle (I am sure no one was left mid-surgery!) and be there for the switch on. How incredible is that? “Oh, just gotta pop back in a few minutes and finish that electrode array placement”. Nice! So was happy to see him there, because he was the one that ‘put it in’ so to speak. Nice that he was able to view it actually working.

So, we sat down and Rachel and Sharan plugged me in. Ben just watched bemused.

Getting plugged in is a bit fiddly. I was pretty nervous at this point. I mean what do you say to waiting media and a ministerial party if you can't hear anything! Gah!

Getting plugged in is a bit fiddly. I was pretty nervous at this point. I mean what do you say to waiting media and a ministerial party if you can't hear anything! Gah!

A switch on usually takes an hour or so. To set everything in the electrodes, they do a test to see if they are all working inside your ear (you can’t hear that test), and then each electrode is activated, and Rachel asked me to tell her whenever I heard three beeps in quick succession, for each tone. She said they would be really soft at first – but I wasn’t prepared for quite how soft. And it wasn’t really sound I was experiencing – more sensations!

So, she started – and I was thinking: “Hang on, what was that? Was that a sound? No?.. No. ..Yes! …No?.. I think? …Maybe? ….No….” it was really hard to tell.

Was that sound I could hear? It was so hard to tell - it just sounded so faint and strange - like nothing I have ever heard, so I wasn't even sure if I was actually hearing anything!

Mum and Professor da Cruz sit waiting to see if I can hear. I'm thinking to myself: "Was that sound I could hear?" It was so hard to tell - it just sounded so faint and strange - like nothing I have ever heard, so I wasn't even sure if I was actually hearing anything!

She turned it up and up and up, slowly slowly slowly. And by golly.

It was sound!

Holy crap, I heard that! It was a beep!

Holy crap, I heard that! It was a beep!

So then of course I started to giggle like a maniac, because I was hearing tones and sounds that I had not heard in a VERY LONG TIME.

Even though they were obviously electronic, it was like they were stimulating my deadened nerves, waking them from a very deep sleep.

So, this wasn’t even the official switch on! This was just mapping them. Once they had all the beeps and tones ‘set’, then they switched it on.

Feeling gleefully happy that I could actually hear tones and sounds that I hadn't heard in ages. Maybe I might be able to play the piano yet!

Feeling gleefully happy that I could actually hear tones and sounds that I hadn't heard in ages. Maybe I might be able to play the piano yet!

Bang!

Noise! Noisy noise! No understanding! (‘Like normal?’ Ben might naughtily suggest?) 

Bells, pings, dings, all put together in one mish-mash so that it sounded like a high pitched static. And this was mainly sensations. I just do not know how to describe it any better. It is not like hearing normal sounds. It was like sensing a feeling in my head, imagine the sound that pins and needles would make if … they made a sound! Or it felt like I had eaten an ice-cream, and was getting an ice-cream headache. But it wasn’t unpleasant, even though it sounds bad.

If anything, I wanted it turned up louder.

It was great to hear those sounds. But totally and utterly weird.

Then came the test of speech.

OK, so I was hearing sounds … But the real question that I always had was … would I be able to understand what people are saying to me? I knew I would get lots of ‘noise’, but would I be able to decipher words and sentences? Would I actually be to ‘understand’ what someone was saying to me?

For the first few minutes, no. I couldn’t even work out a word someone was saying to me. But I could ‘hear’ them.

So when Rachel said, “ok, we’ll check you speech perception in that ear, switch your hearing aid off, and repeat back to me what you hear with just the implant”, I thought to myself – there is NO WAY I will be able to understand what anyone is saying to me. It is all garbled, all high pitched bells dinging. It doesn’t make any sense.

But then, as Rachel did the test, she covered her mouth and said some basic words.

The first word I ever heard in that ear, without lip-reading – was “August”.

To my UTTER amazement, I actually could also hear her saying “January”, and “October” without lip-reading, and some other months of the year.

I mean, I did confuse March with November (don’t ask me how that is possible – not even the syllables are the same!). But, still – I got most of them. Wow. That blew me away. It was hard, but even though I didn’t think I would be able to make out the words – suddenly, there they were. My brain was already going mad trying to process all this new stuff in my head.

But apart from those simple words, I couldn’t really understand what was being said to me. It was just too ‘ding-y’.

My head felt really ‘full’ of something. Nothing was very clear. It just felt full.

I really just wanted to sit down somewhere nice and quiet, and just listen to easy words, maybe just with Ben and me.

But you can’t do that when the world wants to talk.

The Daily Telegraph was there to film a video for their website, and write an article for the newspaper about John Della Bosca's increase in funding for the SCIC.

The Daily Telegraph was there to film a video for their website, and write an article for the newspaper about John Della Bosca's increase in funding for the SCIC.

After describing it to everyone, then I actually went back to Rachel and said “Do you reckon you could turn it up a bit more?? Right now?”

Already my brain had gotten used to it, and within an hour, my ears were wanting more sound.

So, she turned them up higher, and then that was it.

I got the run through of how to work it, how to look after it, all the extra bits and pieces I got in the cochlear pack, how to change the battery case.

And then everyone went home, and my family and I all went out to lunch!

So now I am at home, and I keep hearing something weird, and it is the talking on the TV.

I can hear paper crackling, but it is not very clear yet, just muffled. Of course, the computer keyboard is dinging and dinging like a percussionist, this is the coolest thing ever.

When we were in the car, I didn’t hear any indicator’s clicking like everyone says – but I did hear a strange alarm that went off when we parked the car, and Ben switched the engine off. He told me that it happens every time, it’s apparently to remind you to take the stereo with you! I had not really heard it until now.

So … as soon as I got home with Ben, he said “I’ll read to you!”, and asked me what book I wanted to read. I said “The Cheese Book”, which just lists cheese, HAHA. But he said “how about the Great Battles book?” and looked so hopeful, that I agreed.

So we sat together for about half an hour, with him just reading to me, and me following the words on the page.

It is truly amazing. I am having trouble hearing people’s voices, but that is because they sound like nothing on earth. It is like having to learn a new language. It just doesn’t sound like the english we know. I know that’s weird, and it’s hard to explain, but … you can see why you have to practice for months and months after this, just to be able to understand what people are saying.

Once I heard the bizarre cool way “wheels” and “forces” sound (terms taken and pronounced by Ben so nicely from his “Battles” book – they sound like a xylaphone sweeping up a scale, with robots harmonising in the background), I just realised how crazy cool this whole experience is going to be.

It will be hard.

I will have to totally re-train my brain.

But it’s going to be worth it.

Cochlear implants are expensive.

In Australia, they cost almost AUD$25,000-$30,000. And that’s just for the surgery and implant, not for the rehabilitation and software ‘mapping’.

Luckily, I had private health insurance, which meant the entire amount was covered, except for one payment of AUD$250 night in hospital as excess. I was also really lucky that my doctor and my anaesthetist didn’t charge me the regular ‘gap’, which can be a couple a thousand dollars (thanks guys – you really made my day).

But if I hadn’t had private health insurance I would have had to pay the full amount, or go on the waiting list at the Sydney Cochlear Implant Centre (SCIC).

SCIC receives VERY limited funding from the NSW Health Department for a limited number of cochlear implants for public patients – something like 44 a year.

And considering that 1 in 6 people in Australia have some degree of hearing loss, that numbers seems extremely, pitifully small!

Anthony Roberts said: "I ask the Government to perhaps reconsider its position and support the Opposition in supporting the Sydney Cochlear Implant Centre."

Anthony Roberts wants the Government to support the Sydney Cochlear Implant Centre.

If you are interested, read a request by Liberal member Mr ANTHONY ROBERTS (Lane Cove), Legislative Assembly, 5 March 2009 for more funding for the cochlear implant centre from the government – and then skip to the bottom of this very moving speech, and see how many voted NO! I couldn’t believe it. Shame on them.

Jillian Skinner has been a very vocal supporter of cochlear implants, and good on her. Read a short article here about the lack of funding given

Jillian Skinner, Shadow Minister for Health, and Deputy Leader of the Opposition, is a supporter of the SCIC.

Jillian Skinner, Shadow Minister for Health, and Deputy Leader of the Opposition, is a supporter of the SCIC.

by the current state government.

 In America cochlear implants cost up to US$40,000, and I am not sure that they are covered by any sort of national medical scheme. Being deaf in America would suck.

But get this – and this is the thing that annoys me most.

So I get a cochlear implant for $25,000, and it cost me $250. It is regarded as a prosthesis.

My hearing aids cost me AUD$4,000 … each. And they are regarded by the government as a luxury item.

So, my private health fund gives me back … AUD$600 all up for those hearing aids, and then tell me I can’t get new ones again for several years, even if they break, or I lose them, so I can ‘re-earn’ my health fund points. Hearing aids last up to 5 years.

So hearing aids were more expensive for me to get – costing AUD$7,400, plus batteries, plus audiology appointments, than a cochlear implant.

It is actually cheaper for the people of Australia to get cochlear implants, whether they need them or not – but only if they win the ridiculous race that the current government makes us run – to be one of only 44 people in Australia that will be helped financially to hear again. And 1 in 6 people in Australia have some form of hearing loss. Check out the Access Economics ‘Listen Hear’ report for that figure.

It is ridiculous, but Australia’s hearing health system is operating on an antiquated model – nothing has changed much since they developed the system in the 1940s, following the world wars, and providing for the many new ‘noise-deafened’ veterans.

In fact – it is cheaper for me to buy a return ticket to the UK, stay in London for a week, chilling out, and get a pair of hearing aids free through the UK’s National Health Service, and then fly home – cheaper than buying them here in Australia.

Something is wrong with this model. And the Labor government is in charge of it. And they are doing nothing about it.

I know because I have been to see the Minister in charge of this portfolio, not once, not twice, not three times, but I have been about 5 times to tell them that their hearing health set up is not working, and is not fair.

*sigh*

One day it will change, but only because people like me – the ones who actually use the technology, and need it – make a racket about it.