Submit to the Senate inquiry into hearing health [Australia]

My submission
I went 100% deaf in 2008 and use a cochlear implant.
 
Hearing is a health issue just as sight is.
It should be covered by the Health department and Medicare, not Department of Ageing.
The issue of captions on TV should be a primary issue with the ACMA.
 
Health insurance for cochlear implants is charged at the highest rate. Why aren't they and hearing aids covered by Medicare and perhaps hearing aid and cochlea batteries a tax deduction? They should be.
Cochlear implants need to be insured as part of household goods, not as a special top-dollar one-off item.
 
There should be requirements for media outlets, TV and cinema in particular to maximise the access provided for those who can't use their existing facilities. The media outlets collect plenty of advertising revenue - they can cover the cost of captions on TV and audio loops in cinemas.
 
ABCTV
iView [internet media] needs to have captions NOW. No more delays. Other TV outlets too.
--
Make your views known
Send a message to this address

Or write to:
Committee Secretary
Senate Community Affairs References Committee
PO Box 6100
Parliament House
Canberra  ACT  2600

Submissions should be received by 9 October 2009.

Subaru gone

My beautiful car TUZ442 has gone.
Over the past few years I have been unable to hear the clutch and had to replace the clutch about a year ago. I'm going to go for something smaller and automatic. Probably a Toyota Yaris or similar.

I had my green Subaru for about 9 years. It was the best car to drive in the wet and was great to/from Byron and around town too.

Goodbye - enjoy your new life, hopefully rust-free.

What I did

On Tuesday at Better Hearing Australia [where I do my lip-reading classes] I gave a little presentation to the massed audience [of about 20] which consisted of the pictures from my Europe 09 expedition.

I imported the images from the trip from my digital camera into my computer, using a program called iPhoto. [On a Mac]

Then I edited the keywords for the final sets. Once the sets were established I uploaded the sets and pictures to my web album.

They are available on Picasa in the various sets. [link]

The next export was different. I created a slide show from the images, no music, 5 second duration for each image and exported the entire set's slideshow as a quicktime movie, to a file on my desktop.

At this point I might have imported it to iMovie to add captions, titles and other stuff. But I didn't this time.

I imported the exported slideshow to iTunes and then converted it to iPhone friendly. The iPhone friendly version was then synchronised [sent to] with the iPhone and is available on the phone for viewing.

But how to show it to 20 people? Bit too close for comfort.

I have a cable which connects the iPhone to a TV. So, I could play the movie starting and stopping as appropriate, using the iPhone as a wired remote, and giving my commentary.

Also at BHA they have an audio loop so those of us with the appropriate hearing device can hear what's said. That made it all very easy to get the message across.

It all worked quite well!

Head underwater

The operation of August has been pronounced a success as previously reported.
The CochProf has now advised that I may get my left ear wet.

This is momentous

• I don't need to wear earplugs in the shower surf or swimming pool
• I can swim unhindered, although I willbe completely deaf while doing so - no waterproof speech processors for implants
• It has been 7.5 years since I was able to do that
• Grab your boogie boards and let's head on down to surfside!
  

They Made a Mess

On Friday night I spent 3 or 4 hours at Casualty.
I have swelling where the fat graft was taken about the size of half an orange.
It was diagnosed as a haematoma so back onto antibiotics. Grrr!
At least they didn't have re-open me [yet] and remove anything.
[Wikipedia]
This kind of bruising is excessive and shouldn't happen!

A success

Now for the gory bits. Careful - they're in the next paragraphs
Saw the CochDoc today and my recent operation was pronounced a success.

Here's what they did
The bones in my skull near the left ear are affected by radiotherapy. It's called necrosis and the bone is rotting. This means that there is a great risk to having a cochlear implant on the left side, if they'd even do it. The fix is to remove the dying bone and clean the area up so that the implant won't fail.
In the course of that operation they also removed the ear canal, the drum, inoperative anyway, and other parts of the ear mechanism including two of the three minute bones. The third bone was left to avoid risking any balance I may have remaining in that ear.
Once that was cleaned out, a fat graft was taken from my gut, laughingly called a tummy-tuck by the wags, and any space created in the ear filled to avoid infection.
Also they left a plastic tab which the CochDoc can use, kind of like a post-it note - "Sign here--------->"

The operation was performed under a general anaesthetic. Because of my radiotherapy experience I have fibrous tissue in my throat, which makes it stiff. When you're under a GA they want to keep you breathing so you breathe thru a tube which normally they pass down your throat [I was asleep] Apparently my neck is too stiff and my jaw won't open far enough so they passed the tube down my throat via the nose and thus avoided the bruising of last time. [Link]

The operation went longer than they expected and was more challenging than they expected. However they did prevail and the CochDoc did make the 'successful' pronouncement today.

I was able to have a shower after not having one for a week. It was a good one, like when you've come back from travelling and you just want to get clean. Some wag suggested I might have had a celebratory piss in the shower to celebrate! [Decorum was upheld, don't worry]

What does this all mean?
It means I'll be able to get my left ear wet for the first time in about 4 years, that means I can swim without any earplugs for the first time in 7.5 years!
It means that my second cochlear implant can go ahead - I'll be able to have more stereoscopic sound, hopefully I'll be able to discern direction. It may lead to better discernment of sound generally so I can hear you at the coffee shop or just walking down the street - at the moment everything comes to me thru one ear at the same time. Noise covers everything.

I can swim!

Op pronounced a success by the CochDoc. When the water's warm...

Posted with LifeCast

Channel 9 GO!

There's a new digital TV channel (channel 9/2) - GO!
And guess what?! No captions have I seen on their broadcasts. Wouldn't you think after last year's shenanigans they might have not launched something half-baked?

Feel like complaining?
Link - http://www.mediaaccess.org.au/complaints/
Do it long, do it loud!

While you're there check out captioned-cinema times, now at Palace Verona!

Post Blind Sac

Just out of hospital, felling a bit sorry.
The operation has been a complete success, if challenging.
Apparently there was fibrous tissue to negotiate and they remove two of the three smallest bones in the body and the eardrum and, using fatty tissue from my abdomen recreated my ear canal.
I'll be out of action for a bit, no lifting for a coupla weeks.

Posted with LifeCast

Blind sac

On Wednesday I'll be having a blind sac procedure on my left ear. The idea us to settle down the area and prepare it to receive my second cochlear implant.
The ear has been deaf for over a year. I last had an operation in that ear in 2005.

Posted with LifeCast

The ball starts rolling

Just back from a world circumnavigation to find that moves are underway for the second cochlear implant. Blind Sac procedure next week, to increase the stability of the area in the ear. So Acme Computer remains closed for the time being.

Travelling With An Implant

Well got all the batteries and spares together.

Travelled via BA to Rome from Sydney via Singapore - three flights over 26 hours or so. (!) The friendly staff of BA were very helpful. All I had to do was let them know and they'd move me up the queue, kept me going. It's hard without a travelling companion to interpret for me.

Coming into Rome I met a woman whose husband has an implant. I was able to guide her to Roma Termini. It was good to be useful.

In terminals and on planes I was pretty much unable to understand PA systems. And the noise! On the planes I just turn the implant off. It's better than earplugs but the tinnitus is there to keep you amused.

Posted with LifeCast

June

Howdy
It's been a big month

• 7 years past treatment
• six months cochlear-equipped
• first trip cochlear-equipped [to Melbourne - trams, Brunetti]
• frequent flyer points discharged!
  
• first trip overseas cochlear-equipped [29 June]
• my partner has finished her study [won't know what to do with herself after the previous point]
  
• too much work!

Keep an eye on the blog for location news as it happens, with a slight delay I'm sure...

New Resources

In the light of failure by at least one cinema to provide adequate telecoil facilities I've been looking around for resources for deaf people.

The Australian Human Rights Commission [AHRC] has advice and forms for you to lodge a complaint for yourself or someone else being discriminated against

Forms are on this page <link>
or, this being the 21st century, you can lodge online or via email too.

Resources

National Relay Service
http://www.relayservice.com.au/
This is a great service whereby you can use text chat on your computer to make phone calls. The relay officer does the talking for you! Several different forms, depends how you communicate, whether you can speak but not hear or vice-versa. I've have found it a life-saver. Stay tuned - there may be a FaceBook-based user support group coming...

Cochlear Implant
An Australian success story. The first implant was performed on the 1st of August 1978. [I hope you're sitting down] 30 years to the day after I went 100% deaf! So, like, it was the last day of the 30th year. That is freaky!
Wikipedia page

Sydney Cochlear Implant Centre
http://www.scic.nsw.gov.au/

Cochlear Implant - the animated movie

http://au.youtube.com/Cochlearltd

Deaf Village
Deaf websites and blogs from all over the world
http://deafvillage.com/

If you're interested in AusLan check this site. Kind of like a dictionary, it shows the hand gestures. Click the links!
http://www.auslan.org.au/

Deafness Forum of Australia
Resources, links elsewhere

Australian Tinnitus Association
http://www.tinnitus.asn.au/

Hearing Awareness Week NSW page
23 August 2008

Cochlear Awareness Network
http://www.c-a-network.com

CICADA [Cochlear Implant Club and Advisory Association]
http://www.cicada.org.au/

YouTube Switch-On videos
[link]

Jennie's Story

[link]


Movies - Captioned cinemas
http://www.yourlocalcinema.com.au/

--

Rights and Complaints
Australian Human Right Commission
http://www.humanrights.gov.au/
Make a complaint to the AHRC
http://www.humanrights.gov.au/complaints_information/lodging.html

Media Access
http://www.mediaaccess.org.au/
Captions [and complaints]
link

More cinemas captioned

As of 4 May 2009 there are more cinemas with captioned screening sessions
<http://www.yourlocalcinema.com.au/>

This brings the captioned cinemas in Sydney to a whopping [wait for it], 3!
Come on Dendy and Palace and mega Hoyts where the hell are you?!

The Results are In Again

Today was my six month tune-up. Yes, six months - I can hardly believe it either.
So my 'exemplary' performance
Sentences, no sound -100%
Sentences, with sound - 55%
Words - 56% [average is 30%]

So, next tune-up in six more months and that's my first cochlear anniversary.

Posted with LifeCast

First Cochlear-Equipped Plane Trip

I went to Melbourne to visit me bruvva. I was able to negotiate security after check-in on the web [no luggage, the only way to fly]

And, while there I was able to get around by fantastic tram. Several trips per day. Why did Sydney EVER get rid of trams?

My favourite café - Brunetti in Carlton [tram 1 from the city]

A successful trip.

Posted with LifeCast

The Song - Announcement

By the way...
No correspondence will be entered into regarding the award of any prizes, other than passing on congratulations to the winner. Comment below if you like.

So, there were 35 entries.
There were many songs I have never heard of - hopefully I will hear and recognise them later...
I'd like to be able to include them but these are out of contention.

There were songs I know which would be too jangly. Thing is, with this implant business, I hear differently to you natural-hearing people.

The killer songs were [based on my memory]
Hallelujah, nominated by a few people, a few anonymous. This is such a beautiful song and there is a version by a woman singer [not kd lang] that is in my mind but I don't know who she is
Moon River by Audrey Hepburn [Breakfast at Tiffany's soundtrack]. Such a naive and charming rendition.
Over the Rainbow a terrific song
God Only Knows - Beach Boys
Ave Maria - a real religious song. Difficult to sing and give the song its due.

Artists
Nick Cave had a large following but he leaves me cold. Maybe when I can hear them...
TV themes - you folks know my failings. Not right for this exercise I'm afraid.
Frank Zappa - you sure about that?
Beatles - not quite right for this

OK the winner is...
Hallelujah, a Leonard Cohen song, popularised by Jeff Buckley and also sung by that anonymous woman [one day], and loads of others.
Nominated by AM of the Eastern Suburbs
Congratulations, AM! [Crowd roaring]

Thanx to everyone who nominated songs - it has been a very interesting exercise.

2 March

Went to the CochDoc today - starting the process for implant number 2.
Before the implant can proceed I need a procedure called a "Blind Sac Procedure". 

Since treatment in 2002 [radio and chemotherapy] the structures within my ears have been affected - one outcome is bone necrosis. The risk with the necrosis is that infection will be able to take hold. The Blind Sac procedure seals the area and makes it less-susceptible to infection.
The procedure will happen in August.

Then, once all that has had a chance to recover we'll be investigating the next cochlear implant...