The Rebuttal

A dear friend once described me as an angry man.  “You!”  he said ” Are angry at the world!” I am not really. I do get angry at aspects of it, but I am not angry at it. You see to be angry at the world is to over generalise. The world, by and large, is a great place. The unfortunate thing is that a few people, ignorant people, make simple solutions complicated. Most people get it, it is an irony that the people that need to get it, unfortunately don’t!

As an example,  just this morning, I was looking up quotes from Bill Shorten, Australia’s Parliamentary Secretary for Disability and Children’s Services. Several times this year I have been fortunate to hear Bill Speak. He is very passionate and has been brave enough to go on record and say Australia, being rich as it is, can provide far better for people with a disability than it currently does. I wanted to find a quote of him saying this. Googling the Internet I found a series of videos of Bill speaking on disability.  These were placed on on a website for a group known as Disability Confidence, an organisations dedicated to creating employment opportunities for people with a disability. http://www.disabilityconfidence.org.au/index.php?option=com_content&task=view&id=34&Itemid=1

Of course the videos were not captioned.  There is Bill, recently re married, glowing and happy with shiny teeth. He is obviously spouting his wisdom, and he is a very clever man, but what he had to say I would not know.  The website itself is actually quite good, but the people that created it, who should get it, have not thought to make the videos accessible. This is my point and it is this that makes me angry – not the world but the lack of foresight of a few people that should know better. Perhaps it is wrong of me to single out this little website but it is a glaring example of what I am trying to say.

All weekend I have been receiving emails about the current  moves to make sure emergency services are accessible to people who have disabilities. The gist of these emails is awareness material that is being circulated. You know those videos about preparing for fires and so on. This is part of the review into emergency services that followed the tragic bush-fires in Australia last year.

Now this is a frustrating situation because the awareness ads that are going to be circulated will be captioned. The  difficulty is that they are making the captions inaccessible to many. You see they want to use closed captions on the ads. Closed captions requires people to  have the technology to access them. To overcome this possible glitch all it requires is to use open captions which can be seen by everyone. This means people such as the elderly who have acquired their hearing loss and are unaware of the needed technology or people who lack financial means to be able to afford the technology and have a hearing loss can access the information. It would also mean that information videos placed on the Internet could be accessed by deaf and hearing impaired people as well.

The powers that be have decided to primarily use closed captions  which will mean the ads are not fully accessible. They have been advised to the contrary, that for this sort of information EVERYONE needs immediate access and not just the ones fortunate to have the technology but they will not change their mind. It’s a simple solution but the people that SHOULD KNOW BETTER wont budge.  Angry yet?

In our last edition of The Rebuttal Marnie Kerridge wrote of the situation with cinema captioning in Australia. A potential market of probably 5 million Australians only get  .3% access to the cinema through captioning in Australia (Yes note the decimal point that is POINT THREE percent). The Cinema Industry have offered a paltry, pathetic and insulting minimal increase to this and have asked to be exempt from any legal action for discrimination for the next two and half years. 

Deaf people and their associates are up in arms about this. They are angry and, by and large, have rejected the application for the exemption. They understand that if they do the minimal offer of an increase on the table and access through audio description for the blind might be lost. But they don’t care and  they are sending a message – respect us and offer us something we are worth! But will they be supported by their peak organisations? Or will peak organisations go against the very people they are supposed to represent and support the exemption?

It is worth noting, if you read submissions on the Australian Human Rights Commission website, where you can lodge your support or objection to the exemption, that there are even blind consumers that have rejected the exemption and they currently get nothing! If the consumers are not supported I wont be the only person angry. I can guarantee that! 

In the midst of all this though there is some hope. Click on or cut and paste the following link to your website browser. –  http://media.causes.com/635548?p_id=31998171 …  It is a blatant advertisement for a fast food-chain in America. Its is of a deaf woman who tried to access a drive through facility at a rival fast food chain (note the name of the offending fast food chain was not mentioned ) The deaf woman explains to an interviewer that she was threatened with the cops when she tried to access a drive through facility because she was unable to use the drive through speaker. The worker at the offending fast food chain refused to be flexible and accept her order at the window, slammed the window and threatened her with the cops.

And here is where the blatant advertising happens and the rival chain, Culvers, show what they have done to make their drive through facility accessible. (Ignore my cynicism because it is actually a very good solution.) It’s a simple solution, they have placed a button on their speaker system that you can press if you are deaf. This button then informs the worker that you can’t access the speaker system. You drive to the window and are offered a pen and paper to write your order. Simple solution. An investment of a few thousand dollars and suddenly you have made your business accessible to  millions of potential customers. THERE IS HOPE!!

Now if only the Cinema Industry, emergency services, our peak bodies and the powers that be will take note. The answers are right there before your eyes and they are not complicated!

Deaf people are speaking out in unison. They have finally had enough of the slow, almost non-existent trickle of progress and are letting people know what they want. I speak, of course, of the campaign to increase captioning in cinemas. The Cinema Industry has applied for a 2.5 year exemption in the need to increase access to captioned cinema. To pacify the deaf and hearing impaired people of Australia they have offered a minimal increase in access. They have offered captioning at 35 cinemas 3 times a week. The way this currently works they only offer captioning for one movie a week and nearly always for off peak movie sessions. This minimal increase is for a potential 4 million customers. If any other industry treated 4 million customers in this way they would be out of business in no time.

In fact at the Australian Human Rights Commission (AHRC) web page, consumers are invited to view and comment on the Cinema Industries application for exemption. If they so desire they can then submit whether they oppose or agree with the application for exemption. To date more than 100 people have chosen to submit a response. The vast majority are violently opposed to accepting the exemption. Further they are clearly fed up and angry with the lack of real progress and real increase in access to captioned cinema. The community is speaking clearly and one would hope that their views would be respected. Apparently not!

You see, despite so many people voicing opposition, some within our deafness sector are prepared to accept the Cinema Industries application for exemption and the minimal increase in captioning that has been offered with it. There is a train of thought that some increase is better than no increase. There is a belief that even if we oppose the exemption it will be granted anyway AND if the exemption is not granted then any gains that have been made will be lost.

And believe it or not, some of our leaders within deafness sector are actually angry that consumers are so violently opposed to accepting the exemption and the fact that the community is dismissive of the minimal gains that have been made. In some ways this is understandable. Imagine having worked for several years on lobbying for increased access to cinema captioning, getting some minimal gains and then being told it wasn’t good enough by us and then have to go back to square one. It would not be a pleasant feeling.

Some of the leaders have actually become quite defensive. They are claiming the rejections are personal and that it’s because certain organisations and individuals are not liked. They are asking why the community did not complain before when it mattered and are only now stomping their feet and protesting. They claim that if more people had made complaints we wouldn’t be where we are now.

And believe it or not they are actually prepared to go against the majority of over 100 people who have submitted a response to the cinema industries exemption application. The community, they say, do not understand the strategic approach that is being used. The community were too passive for too long they say … this is the agreement – like it or lump it. I would like to ask one question of these leaders and organisations – WHO ARE YOU REPRESENTING?

Consider that there are potentially 4 million people who are Deaf or hearing impaired in Australia who require captioning to access movies. Consider also that as part of the lobby for increased captioning, Blind and vision impaired people have also asked for the introduction of audio descriptions in movies. How many more people that the blind bring to the table I do not know. I imagine that by making cinema more accessible to the deaf and blind you have the potential to provide access to five million more Australians.

In this sense providing access isn’t just the right thing to do; it makes good business sense. If a business had the potential to get 5 million more customers don’t you think it would be prudent to invest in their needs? Of course it would. Instead the cinema industry is claiming that it’s too expensive. To me, 5 million people spells PROFITS … any outlay will be returned very quickly by the increase in customers.

But to get the returns, the cinema industry needs to invest in access properly and I dare say, aggressively. The cinema industry is currently claiming that captioned cinema is, at present, poorly attended. Well DUH! Of course it is. They provide access to only one movie per week to selected time slots. These movies are usually at off peak times when no one can attend. While the general populace has a wealth of movies to attend the deaf have a choice of ONE. Whether it is crappy or of no interest to the individual is of no importance; if we don’t attend it is seen as a lack of interest in captioned cinema. OH COME ON!! It does not take Einstein to see what is happening. If you provided one movie at 3 pm only on Thursdays to the general populace, how many would attend? I would hazard a guess that it would be VERY FEW!

And did you know that if the exemption is granted that it will mean that for the next 2.5 years no one can complain about cinema access. If the minimal gains that are on offer are accepted and the exemption is granted, that is our lot for the next 2.5 years. No complaints will be allowed. In a nutshell, agree to this exemption and the paltry gains on offer and the right to increased access for the next 2.5 years is gone. We will be powerless. What is more – we will have to hope that our lobbyists, who have not been able to get any substantial gains in the last few years, will get an agreement to further gains when the exemption runs out. Will they? Don’t bet on it.

My advice is – TOUGH IT OUT. Oppose and reject the minimal gains that have been offered. Oppose strongly the application from the cinema industry for exemption from increased captioning access. Let these people know that Deaf and hearing impaired people are not a COST but are people to be valued. Let these people know that it will not be until we are invested in properly that the financial gains will flow to the cinemas. Let these people know that we want access to cinema at near to the same level as everyone else and not a mere dribble of progress that will lead to full access, according to Arts Access Victoria, in 1000 years. Let them know that we are SERIOUS about access and that access is not just a feel good handout. And most of all let our deaf sector organisations know that when we speak, as we have on the AHRC page, THEY SHOULD LISTEN. Remind them that they represent the views of the consumers. Because, after all, is this not why they are there?

Did you know that in 1996 that 3 362 people died as the result of accidents in Chinese coal mines. Or that 16 workers died building the Sydney Harbour Bridge. Building the Empire State building led to the deaths of five construction workers. Death at work is a tragic and mostly unnecessary thing.  Recognising this governments the world over have enacted Occupational Health and Safety Laws (OHS). Indeed OHS is in our faces all the time. Have you seen the latest ads on TV.  Where  workers fall off ladders or slip on floors, as they fall we see their limbs hitting the ground and they are in X Ray format. In all their gory detail we see the pain etched in the faces of the workers and their bones shattering in slow motion. Its queasy but effective advertising that leaves the watcher in no doubt that OHS is an important thing.

In the Australian Capital Territory gross breaches of OHS laws that lead to death can attract manslaughter charges. Fines can reach $1 million and there is a maximum of 20 years imprisonment for gross breaches of OHS laws that lead to death. State OHS laws in Australia vary but standards must be maintained. Large fines and imprisonment are the norm. Employers are subject to random spot checks from inspectors that can lead to substantial fines. In short OHS is no joke. Employers breach OHS laws at their peril. And rightly so because serious injury and death is no joke either.

But it has not always been the way. For years employers got away, virtually, with murder. It goes as far back as the Industrial revolution when workers were forced to work in dangerous conditions and for ridiculously long hours. It took unions and intensive lobbying to get OHS laws implemented. To this day OHS laws still are not seen as being strong enough and industrial advocates continue to lobby for further protection. Thankfully governments have largely enforced OHS laws,  introducing imprisonment and large fines for breaches of the laws. In short OHS laws today offer PROTECTION. Employers are left in no doubt as to what they must do and what can happen if they do not meet the required standards.

This is a far cry from our disability discrimination laws. Our disability discrimination laws offer loop holes that are so big a herd of elephants could get through them. Our disability discrimination laws rely on the principle of reasonable adjustments and unjustifiable hardship. In short organisations can argue that they have taken all reasonable steps to avoid discrimination and they can even argue that they discriminated only because they did not have enough money to not discriminate.

Compare this with our OHS laws. Imagine Judy going to work tomorrow. The safety cover on the meat slicer is broken. She chops of her hand and can’t work in her chosen area ever again. The employer argues that they tried to fix the cover several times but couldn’t. Last month they lost a few thousand dollars and simply couldn’t afford to fix the cover. The judge takes a look at the case and says OK .. you did everything within reason and if you fixed it you would have gone out of business. Case dismissed.  Meanwhile Judy is left waving her stump in  a pathetic effort to remind everyone that she was the victim .. “WHAT ABOUT ME” – she cries. Too bad – money and profit comes first.

Of course this scenario is unlikely to happen in Australia or any other developed countries. Employers KNOW that if they break OHS laws they face big fines and are LIKELY to make sure the workplace is as safe as it possibly can be. Random spot inspections from OHS authorities serve to keep employers on their toes. In the case of injury workers compensation is likely to support workers like Judy. Admittedly there is no compensation for the loss of her hand but at least there is help.

Did you know that the Cinema industry have applied to the Australian Human Rights Commission for an exemption for another 2.5 years from increasing cinema captioning. Arts Access Victoria  put out a media release today imploring all and sundry to reject their application for exemption. Arts Access Victoria provided figures that showed that at current rates of progress it will be 1000 years before the deaf get full captioned access to cinemas. An absurd state of affairs.

In 2004, for example, Greater Union Cinemas posted a net profit of $52 million. Healthy by any standards yet it will not commit to any substantial increase in captioned cinema. We deaf people are expected to say thank you very much for whatever paltry handout we get and then accept this as our lot for the next three years. Imagine if we had Discrimination Standards similar to OHS laws whereby the standard was that  all Multiplex Cinemas must commit to at least 1 captioned session of EVERY movie per day including at least four peak time showings per week.  If they don’t then they face huge fines or six months in jail. (Ok Jail might be a bit extreme.) I bet you they would comply quick sharp.

Imagine if there were disrimination inspectors. At random they visit schools or workplaces.  They ask to see disability action plans, they check for accessible formats for information, they check if all meetings are interpreted for deaf participants and so on. If you don’t comply .. Fines. And what is more there are no excuses! Organisations have a responsibility to KNOW. Just like with safety.

Imagine with DVDs if we have a law that says EVERY DVD will be captioned … no excuses. $10 000 fines for distributors that don’t comply. Every DVD checked by the inspectors … No captions then face the consequences! Would they comply? HO HO HO HO .. you bet they would.

Legislating for discrimination in the same way as OHS is not hard. You just recognise that people who are deaf or have disabilities are active and contributing members of our society. You recognise that discrimination, like injuries in the work place, is preventable and abhorrent and you draft laws with punch that protect and prescribe what must happen. Enough of this Reasonable Adjustments crap … Enough of unjustifiable hardship nonsense – if safety can be dictated and prescribed then why not discrimination laws. Its not hard and it is not as far fetched as it seems!

… Every word like an unnecessary stain on silence and nothingness …. Samual Beckett.  Beckett could well have been foreseeing Facebook because many would say that this quote describes Facebook to a tee . There are cynics of Facebook, and I am one sometimes, who believe that Facebook is nothing more than inane drivel. Often it is but it is also hellish fun and it has done something that we cant do fully  in real life. It has bridged the gap between  hearing people and deaf people.

I guess this is truer for those deaf who have a good grasp of the English language and who can use text easily. Nevertheless hearing and deaf, through Facebook, communicate and interact as if their are no communication barriers. There is no broken sign language or exaggerated lip movements. No please repeat that, no pretending you have got the joke and laughing along so as to not look like a miserable bastard .. it’s just people interacting, sharing loving and laughing together at will.

The truth is that Facebook mirrors real life. Those people  who say, me included, that Facebook is inane drivel need to look back at their last face to face conversation. They would be hard pressed to remember what it was. Mine was talking about the relative merits of Carlton Cole and Zavron Hines with my son. This is serious stuff. One is a six foot three centre forward with pace and strength to burn, the other is a short  zippy right half with an eye for goal. They balance the team wonderfully. Important stuff this!!!

Meanwhile on Facebook my wife has announced she has hurt her finger at netball. This is, of course, something we all really needed to know.  We just could not survive not knowing. Somehow the announcement has sent people off on tangents. Brendan has started talking Arabic, my wife has replied in French, Colleen has shared that she didn’t like her French teacher while I have responded to Brendan that he is trying to get Colleen in the sack. Inane drivel, funny drivel .. pointless .. but no more pointless than my discussion with my son on the relative merits of two West Ham players.

On Facebook I can meet virtually anyone who has a good grasp of English and start communicating with them at will. I can do this through the chat feature or I can play on the status updates. I can share wit and wisdom at will. Hearing friends who know how will sometimes caption the videos they put up so that I miss out on nothing.  It’s almost a perfect virtual world. Almost because I can not share in the audio and the music but no matter,  I can interact fluently anytime.

I can’t do this in my real world. I can’t walk into a pub and start a conversation with someone at the bar. Well I can, but chances are it will be stilted. Chances are that the conversation will stop and start. If I meet someone I would hope to hell that there wasn’t anyone with them so that I could just focus on that one person instead of trying to follow a conversation with multiple participants.

We deafies from hearing families all dread the family reunions. Where everyone is laughing and joking and we have to hope that someone will cue us into the joke. Where auntie Martha with her moustache that  makes her impossible to lipread insists on being the only person that will talk to you. We indulge the family, do our bit and go home. Usually exhausted at the trials of trying to be part of the group.

But on Facebook I meet people and have virtual dinner parties. We link up on Yahoo messenger and  all chat and joke at will. No one is left out. We post pictures of our food. Share videos  and photos. We have little asides with individual members of the group . We share, laugh and sometimes cry. It takes us away from the constant struggle to be included and lets us experience something that is often not possible in the real world. All praise Facebook – for all its faults it means that for the deaf the virtual is often better than the real reality!!

I  have written about this before, and I will write about it again because it frustrates the hell out of me. Namely  Australia’s deafness sector and Australia’s disability discrimination laws. The sector because it is over represented  by a myriad of organisations who work at tangents to each other. The discrimination laws because they are putrid bags of nothing that require us to complain to get anything changed. Putrid because the moment anyone complains against an organisation it immediately creates a putrid air of non-cooperation to the point that it becomes a cesspool of bad blood where there has to be a winner and a loser.

It is frustrating because complain is all that deaf people and the sector seem to do.   Apparently at a recent Government enquiry into deafness one guy, to the embarrassment of the deafness sector,  told the enquiry that Australia had many deafness sector organisations  -“And they all hate each other.”  Although the Government enquiry was probably not the best place to air this opinion he probably isn’t too far off the mark.

Take for example the  bun fight that happened between Deaf Can Do and the National Auslan Booking Service this year in South Australia. It required the intervention of Deaf Australia. Traditionally, although it seems to be improving, Deaf Australia and Deafness Forum have not been the best of buddies and continue to eye each other with a degree of mistrust. More recently there was an alleged disagreement between two organisations where one took a significant bequest from another deafness organisation because the bequester had not realised there had been a change in the targeted organisations name. This latter example apparently ended up in court.

A few years ago there was also the bizarre situation of a Government funded organisation virtually stealing the business name of another. The established service was known as Hearing Solutions while the new service called itself  Hearing Loss Solutions. When approached about the similarities in the names the new service could not or would not see how consumers might be confused. In a bizarre twist the new service offered virtually the same service as the established one and the two service providers were located no more than five minutes apart in the CBD.  Our deafness sector is often its own worse enemy.

It seems all we can do in the deafness area is complain …and I am well aware this is exactly what I am doing now, just in case you wish to point this out to me.  When we are not complaining amongst ourselves we have to complain about discrimination because this is the only way to make Australia’s discrimination laws work. At a recent meeting one hearing impaired woman said that she dare not make any more complaints because she had so many in the pipeline. This was in regard to a complaint about captions on DVDs. My own wife feels that she sticks out like a sore thumb at work because the only way to improve access is to constantly complain about the lack of it. It wears you down in the end.

But that’s the lot of the Deaf  and people with a disability in Australia.  If they feel they are being discriminated against they have to first complain to the Australian Human Rights Commission. The Human Rights Commission will then attempt to resolve the complaint.  If they cannot, the next option is the courts. Usually everything just stops there because there are few willing to risk their house on losing a court case even when it is clear they are being discriminated against.

Australia’s discrimination law does not tell you what you must do or not do in terms of discrimination .. it just says discrimination is illegal. Other laws say dont kill or dont steal or go to jail. Australia’s disability discrimmination laws just say dont discriminate unless it’s within reason! If an individual feels they are discriminated against they have to make a complaint. Then it’s in the lap of the gods .. they have to hope that the powers that be agree with them. And if they don’t then they have to risk tens and thousand of dollars on a court case that they might still lose. It’s crazy.

We Deaf people and our organisations often don’t help ourselves either. We often cant even agree what it is we will complain about or how we will complain. Take  the captioned cinema campaign. It’s been going on for years. Apparently one person has decreed that Rear Window Captioning is not wanted because some Deaf people don’t like to stand out in a cinema as the ones using the technology. For those that don’t know, RWC is technology that allows the watcher to view captions on a device that is attached to the seat in front of them. The alternative is to have open captions for all. The benefit of RWC is that not everyone has to watch the captions meaning the general public are not inconvenienced.  RWC potentially could mean that all movies could be captioned rather than just a select few put aside for Deaf people. So because one or two don’t like the idea of RWC the whole campaign to consider cinema captioning through RWC was, allegedly, dropped.  I would have thought captioning  any which way is what people would want but apparently, because a few sensitive souls don’t want to stand out, we all have to make do.

Feel like screaming? You’re not the only one! Join me its therapeutic. Suffice to say there has to be a better way than this!

It is twenty years now since I started working at the Deaf Society in Adelaide. In those twenty years I have seen a  few things. I had a drug crazed client throw up on my shoe and scream at  me that the Aliens were coming through the roof to get him. I have had clients kill themselves by burning down their house. I have assisted  clients into work and families to understand and accept and communicate with their deaf kids. It is funny because some years later a few old clients have sought me out on Facebook, just to say hello and thank me. It’s always moving to know you have had some sort of impact and assisted a family or a person to achieve something in life. The positives keep you motivated. And just as well because the negatives are often hard to bear.

Generally in my work people work well together. Most of us strive for positive outcomes. Sometimes we succeed and sometimes we do not. Sometimes we are dealing with controversial and difficult situations. I once witnessed a deaf child using signs that could be interpreted as disclosure of sexual abuse.  He was using signs that suggested that he had witnessed or experienced penetration. He was an otherwise happy child. His parents were lovely but rough around the edges. Under the law any sign of sexual abuse must be reported to the authorities. The child may have seen his parents having sex or watched a pornographic movie, this is still classified as reportable. You make such reports with a heavy heart because you know that the report you are about to make will turn the child’s family life upside down. It is sometimes hard to remain positive.  

I was looking back on my work life on the weekend. Primarily because I heard a tale that was among the most appalling I have heard in my 20 years. Allegedly an organisation was left a vast sum of money by an ex-client. The client left this money to the organisation as a way of saying thank you and enabling the organisation to continue to support others as they had them. Unfortunately the client used the wrong business name in his or her will. An old name that was now owned by another organisation. Allegedly the other organisation claimed the money for themselves which was against the spirit of the bequest. It seems that this is not the first time that this has happened either. If true this is one of the more appalling situations I have ever heard about in my time. Not quite the worst but right up there.

Back in the Nineties I worked as a Case Manager for people who had physical disabilities. My primary role was to assess the care they required to live independently in their own homes. It was often simply organising for them to have someone come in and clean the house or cook meals. It was sometimes more complex requiring transport, intensive care, transition from hospital to home and training in the use of assistive devices.  Mostly the solutions were very simple to implement – all they needed was money – something that is not always forthcoming.

I had one client who was a Bikie. A huge mountain of a man. He had tattoos over the best part of his body and the mandatory beard and earrings. He was from the Northern Territory. He had come off his bike there and his injuries led him to being a quadriplegic. In the Nineties the Territory lacked the facilities he required for his rehabilitation. He was sent to Adelaide for treatment. He later received a compensation payout and bought a home in Adelaide to be close to his rehab provider.

Over a period of time he became home-sick. He wanted to return home to be near family and friends. He asked me for assistance in arranging this. In Adelaide he lived in his own home. A carer came in in the mornings to help him out of bed, bathe him, prepare his meals for the day and so on. He naturally needed all of this arranged if he was to move back to the Territory. It seems a fairly straight forward request … But money was involved .. and money is something that many support organisations either take at will and give out very sparingly.  Human dignity is expensive. Money must be retained and dignity goes the way of the scrapheap!

I was determined to assist my client. I did some research and found out the relevant authorities to contact in the Territory. I called them and explained the situation. They point-blank said they did not have the funds to care for my client. If my client was to return to the Territory he would have had to live in a nursing home. There was no funding for him to live independently in his own home. They suggested that if the funding he had in Adelaide could be transferred then they could budget for my clients needs the following year and he would be able to live as he had in Adelaide.

Here it gets distasteful. I approached my organisation with the view of seeing if funds could be transferred. We are, after all , one nation. The money had already been budgeted for my client anyway. I reasoned that any other person could just pack up and move as they pleased. My client should have the same right.  Of course, because money is involved and money has a value far greater than life in the eyes of  many, the answer was NO! My client was understandably devastated. Both South Australian and Territory officials refused to deal.

But the client and I, we fought the authorities tooth and nail. So hard did we fight that my boss actually took me aside to remind me, and this is true, that the client was secondary and my primary focus was to protect the organisation and the Government Minister in question. I recall my reply to him was something along the lines of,  “@#$# that!”  My client paid me the ultimate compliment, he said to me, “.. Gary, why is a guy like you working for a bunch of c**ts like this?”  I offer no apologies for the language. He was a Bikie after all and what he said to me remains the the most profound compliment that any client has ever given me. 

Unfortunately before we could progress anything my client died. He developed a pressure sore which became infected. My last vision of this wonderful character was lying on his back asleep in hospital in full view of everyone. Just a sheet draped over his groin. His dignity and privacy not even considered. It was and is the most shameful way I have ever seen anyone treated.

So when I am depressed, when I hear of organisations swindling another, when I hear of clients going without while the bosses indulge I go back to the question of my client, ” … Gary why is a guy like you working for a bunch of c**ts like this?”  I never answered him. But the answer is clear .. Because if we don’t who will?  Besides as old clients on Facebook remind me, positive outcomes do occur. It isn’t all bad but sometimes it’s very hard to stay positive!

Not long ago a friend asked me how I prevent myself banging my head on the walls. He was explaining to  me how frustrated he was with the progress of change, with how access, Deaf organisations and committees seem to too slowly evolve or improve. I pointed out to him that change in Australia had indeed happened. Not at the same pace as the rest of the world but it had happened; and quite rapidly at that. For example not long ago we were able to watch only a few television shows with captions. Nearly all of these were Australian soap or artsy British shows. What is the figure now? I think it’s around 80%.

 Just over 20 years ago the University of South Australia would not pay for interpreters for my course. They relied on buddy systems to support students with a disability. Indeed on the second day of my social work training I had to get up in front of the class and declare that I was deaf, that I needed help with notes and ask for volunteers. I had to do this because the disability liaison officer of the day hadn’t done it for me as he had promised.

 I recently was appointed to the National Vocational Education and Training Equity Council advising the Deputy Prime Minister. I attended a forum in Tasmania that looked at skills training for Tasmanian equity groups. They were talking about the lack of funding to support people with additional needs. They were discussing how hard it was to find interpreters to meet the needs of Deaf students. Although this sounds bad one needs to remember that not that long ago the concept of paying for interpreters did not exist. It is indeed a huge shift to move from not even contemplating paying for interpreters and from using buddies to bemoaning the fact that there are not enough interpreters available. That is the new challenge, not funding interpreters but investing in the training of interpreters to meet the demand. To me, having come from an age where there was no chance of getting funding for interpreters, this is a positive thing. I mean, blimey; we now have interpreting through the internet as well. The change has been huge. Interpreting is now a multi-million dollar business.

We also have captioning. A few years ago the University of Melbourne introduced Live Remote Captioning for hearing impaired and Deaf students. Live Remote Captioning utilises the internet and phone to provide live captioning for students to access lectures. For those deaf people who prefer information in English this has been a godsend. The provision ofcaptioning and interpreting for students at university or TAFE is a far cry from the days when Deaf and hearing impaired students had to follow their appointed buddy around and look over the buddies shoulder as the buddy frantically took notes just to be able to follow lectures. Indeed my wife, in her final years of school, relied on her mother and sisters to take notes for her. This sort of thing would not even be considered today. The few companies that offer Live Remote Captioning are reaping ahealthy profit as well. The Deaf are good business.

I am part of the committee that is selecting the city to host the 2012 Australian Deaf Games n Victoria. In years gone by the Deaf community set up committees and organised the Games in the appointed capital city. Usually a few dedicated souls were responsible for organising things and they always did a marvellous job.Source: Bagshaw,Whole of life Approach)  The “NEEDY” are not welfare cases they are BIG BUSINESS. They create employment, demand, and MONEY. This is a cold hard fact. WE HAVE ECONOMIC POWER! How many reading this rely on us for their job?

In recent years the Australian Deaf Games have struggled. Costs have spiralled. Insurance liability, economic down-turns or simply the lack of committed volunteers are just some of the reasons that it has been difficult to sustain the Games. Indeed there were many who claimed the Games were not sustainable.

The Australian Deaf Games have now become a big business. Cities in Victoria have been asked to tender for the right to host the Games. Economic arguments have been developed as to how the Games will financially benefit the cities that bid to host the games. Cities throughout Victoria have put up their hands to host the games. Some have offered cash incentives of tens and thousands of dollars to hold the Games in their city. Apart from cash they have offered in-kind support such as transport or the free use of venues. No longer are the Deaf charity cases – they are BIG BUSINESS, something to be invested in. AND all of this has been driven by Deaf people! We don’t want charity nor do we expect it. We create opportunities, employment and money. We are BIG BUSINESS!!

The CEOs that send out the pitying fundraising drivel that lands painfully in our letter boxes need to take note. We have a lot to thank of people like The Rebuttal’s Dean Barton-Smith and the other Deaf people who secured the multi-million dollar funding for the Melbourne 2005 Deaflympics. They showed us the way and have not got anywhere near the praise that they deserved.

The people that lobbied to secure funding for the M2005 Deaflympics produced research that showed that the Games were likely to create $28 million in turnover for the Victorian economy. The Victorian Government provided $4 million in funding which was matched by the Federal Government. The economic benefits for Victoria were, in all liklihood, in excess of the predicted $28 million.

The Victorian Deaf community of the time played an enormous role in securing the M2005 Deaflympics for Australia and Victoria. Indeed they played an even larger role in securing the millions in funding to host the games. How much of the $28 million was returned to them for their efforts? A paltry $200 000. A puny return indeed. Deaf Sports Australia and to a lesser degree Deaf Sport Recreation Victoria, of which I am President, need to take some responsibility for this. Our leaders were asleep at the wheel. We must learn from this costly mistake and in the future ensure we get a fair return for the benefits that the wider community reap from our activities.

 Aside from the Deaf it has been suggested that by investing properly in people with a disability, by making them active participants in work, study and play that the economy would reap $46 billion. So yes we have come a long way and the new buzz word in meeting our needs is INVESTMENT. You don’t help and support people such as the Deaf you invest in them. By investing in the “NEEDY” such as us, lots of people benefit. It’s no longer heart warming to provide access through things such as captioning, interpreting or hosting things like the Australian Deaf Games – It is pure and simple – BIG BUSINESS!. Deaf organisations that continue to push the WELFARE and SOB STORY basket should take note. Deaf and hearing impaired people have come of age we are ready to take control. WE demand RESPECT!

I heard a very strange rumour yesterday that Deaf Services Queensland is taking over/going into partnership (Tick which is appropriate.) with Better Hearing Australia, Queensland Branch.  I have not been able to confirm what is happening and it may well turn out to be untrue but this is not the point of the article. The point is that when things like this occur it is always the consumers that are last to know. That these organisations exist to support Deaf and hearing impaired consumers is an issue that bypasses the brains of the big-wigs.

Now I do not advocate that every little decision made by our services and advocacy organisations be approved by the consumers but when the decisions that are being made impact on the very direction and culture that these organisations are taking then consumers need to be consulted as a matter of course. The consumers need to be consulted at the very beginning of the process not at the very end. This generally does not happen.

What really happens is that the process is taken to the very end. It’s all very cloak and dagger. Decisions are virtually cemented in stone; all that is needed is the signatures. Most probably the signatures have already dried on the paper. THEN and only THEN do consumers hear about it. It is announced with much fanfare and celebration, consumers are told it will happen and what wonderful benefits they will receive. Usually only a select few consumers are invited. Nice people who will agree with everything, smile, enjoy the free sandwiches and wine on offer. They will then go home with no objections and the powers that be will continue on their merry way.  A few weeks later an official announcement is made and the powers that be will claim extensive consultation occurred.

Now this may sound cynical but I have been witness to this sort of thing.  I have sat as a Director on many occasions and I can tell you that the most oft mentioned word is HUSHHHHHH!!! Often you are required to sign a confidentiality agreement. Sometimes you are required, as a Director, to sign papers that state you are unable to say anything untoward about the organisation or publicly disagree with any decision made. It’s all very hush hush. There are some who claim it’s absolutely necessary that confidentiality of Board Meetings be maintained – well in most cases I disagree.

A Board of Directors are appointed by its stakeholders and they represent these stakeholders. Now, for example, if I am appointed to the Board by the Deaf community, I represent the views of the Deaf community to that Board. If decisions are being made that are, in my view, contrary to the needs and wants of the stakeholders that I represent then it is important that I bring this to their attention to get their views and inform them as to what is going on. After all the organisation exists BECAUSE of these stakeholders not FOR them. This is a point that is 0ften lost on the powers that be.

The powers that be are often of the view that THEY KNOW BEST! That consumers need to be seen but not heard. That because the Powers that Be are on six figure salaries then THEY should be trusted, revered and respected for every decision that they make. This welfarish, controlling and entirely disempowering mentality of the powers that be is at the very root of the problems of many of these big charitable organisations. They believe they are there to dictate and inform not to SERVE.

Where confidentiality should come in is where Directors voice opinions. Sometimes they voice opinions that if heard by the consumers could lead to backlash and even personal attacks. In discussing issues it is only the issues that should be discussed; it should never be a case of so and so said. Rather it should be a case of discussing the issues and options that are on the table. These issues and options should be discussed and ultimately decided by the stakeholders and not just by the gang of six or seven people that form a Board of Directors. In short stakeholders should be extensively consulted over a period of weeks or months and not just informed what has been agreed a few days before or after the decision is to be or has been finalised.

Of course CEOs hate this approach because it means more work for them. They hate it because it takes time. They hate it because for some unknown reason many of the CEOs seem to think that the stakeholders they SERVE lack the intelligence and know how to really understand what is happening. Now I agree that you can not consult for every single issues that an organisation must consider but when the decisions impact on the very future and culture of the organisation it is the STAKEHOLDERS that should have the final say.

Let us say for example The Royal Institute for the Daft (RID) has decided to sell the land  that is occupied by the recreational buildings where the Daft meet several times a week. RID are in negotiations with Wigleys Chewing Gum School who want to buy the land. The land collectively is worth $30 million. Wigleys have put in an offer and the Board of Directors have to consider it. The Board are excited; by golly with $30 million perhaps they might even receive a sitting fee. The CEO is eyeing the prestige and the possibility of a pay-rise. Aside from these selfish reasons the Directors can see that $30 million can secure the future of the organisation, which is a very valid point.

In all of the excitement they realise that the buildings are heritage listed and to sell them they have to enter into sensitive negotiations with the Government. They don’t want anyone to know about the heritage issues because it might impact on the price of the sale. Again this is a very valid point. Brendan Boyce is a lone voice among the Directors. He wants the Daft to be informed and included in all discussions because, after all, they are the reason we are here. NO! NO! NO! Such a suggestion might jeopardise the sale, it’s beyond the Daft to grasp such complexities. The Directors and the CEO overrule Brendan … the sale must go through at all costs because it is the future of the organisation at stake as well as the sitting fees, the prestige and the potential pay-rise. 

The process takes its path. After 12 months of intensive negotiations and sensitive discussions to lift the heritage listing a sale is agreed.  Brendan reminds the Directors that they have yet to inform the Daft about the intention to sell or seek the Daft’s view of the possible sale.  He further raises issues such as where will the DAFT meet. What of their history, their community – Brendan wants to know how we will ensure they Daft are able to retain and maintain these things. The Directors overrule Brendan promising to consult with the DAFT as to how to best use the proceeds of the sale.

The sale is announced, the Daft are angry. They have lost their spiritual home. They want to know why they were not consulted. The Directors and the CEO are bemused… How can they be so ungrateful? They promise consultations as to how the money will be spent. Of course the consultations turn out to be nothing but meetings that inform the Daft HOW THE MONEY WILL BE SPENT.

 Having been a Director on numerous Boards I can tell you THIS HAPPENS! Stakeholders are the last to know. They are often seen as a hindrance to the process rather than a part of it. Personal ambition and gain are often paramount in deliberations- stakeholders are well down the pecking order. They are rarely consulted properly – They are told!! And we let it happen; I am not sure who is more to blame!

So members of BHA in Queensland… I don’t know if the rumour is true but I suggest if it worries you to start asking questions now. I suspect that if the rumour is true that the decision has been done and dusted and that you will be informed and not asked – the Directors and the CEO will have seen to that.

Did you know 20 years ago this country fielded it then largest Australian Deaflympic Team of 129 to attend the 1989 Deaflympic Games in New Zealand.

Did you know that just four years ago, this country proudly paraded its largest Australian Deaflympic Team of around 230 to attend the 2005 Melbourne Deaflympic Games.

In case you have missed it, Deaf Sports Australia (DSA) announced a few weeks ago it will be sending a team of just 46 Australian Deaflympians to participate in the 2009 Deaflympic Games in Taipei, Taiwan. This includes one photographer and not an Athlete Liaison Officer like what the Australian Olympic Team provides that adds more value / benefit to the team.

This massive reduction in team size got a lot of people talking. Words such as “Shocked”, “Disbelief’, “Concerned”, “Disappointing”, “Disillusioned” to comments such as “What happened?”, “This should not be happening” and “Where did we go wrong?”

I can vouch that the responses is not a reflection of the quality of those athletes within the 46.

One of the reason why the deaf sporting community wanted the Deaflympic Games to be held in Australia was not  so that it would allow them the opportunity to not only showcase our finest elite deaf athletes from around the world, but also to promote deaf sports in the mainstream arena, to provide education and awareness of how to deal with a person who is Deaf or hard of hearing, and to allow both the deaf community and the general public to embrace one another and remove barriers.

Little do people know that bidding, establishing and delivering the Melbourne 2005 Deaflympic Games was more than 20 years in the making. Yes – going back to 1985 Australia was in serious deliberation whether we should host this event. Hence the seed was planted. It was not until 1999 that we managed to secure the rights to host the Games. Unlike other Olympic / Paralympics cities (who operate with multi million budgets), all the work was all done voluntary. We spent the next few years ensuring that the event would be run ‘professionally’ thereby moving away from a voluntary run event to one that entails paid staff. The event itself was costed at $10 million not including free support. The result was that we delivered a very successful Games and a benchmark for other organisers to follow.

Achieving such success was critical not only for the event but for deaf sports future. This was our unique and ‘once in a generation’ opportunity to showcase ourselves as well as lift deaf sports in Australia to another level. It was seen as a chance for all in deaf sports to grow in size, to partner with mainstream sports and provide inspiration and hope for many Deaf and hard of hearing Australians who are isolated or yet to be introduced into sport / recreation.

However something appears to have gone wrong. In a couple of weeks we are now sending a team of just 46 (well 45 if you dont count the photographer) to the next Deaflympic Games. This is a major backward step to what was hoped after the 2005 Games. Yes – we have fielded  smaller teams before. Yes – when a country is hosting the Deaflympic Games they are automatically qualified in all sports. In other cases some sports (not all) have put in place a lower qualifying standard in order to allow young people the opportunity to compete as a building block for the future. This of course assisted in providing a larger team size in 2005. Yes, having the Games in Australia will alleviate the need to undertake a larger amount of fund raising than required. However, even with these measures, we should still be able to field a team of at least 150.

Consider these facts: 

• The cost to travel to Taipei is $6,000 per team member. The cost difference (2005 and 2009) is really the cost of international airfare which is not that much different to what was paid to go to the 1989 Deaflympic Games in New Zealand (taking into consideration cost back then)
• There appears to have been no succession planning to continue with the build up after the Melbourne 2005 Deaflympics.
• There was no talent identification programs to recruit potential new deaf athletes. This should have occurred immediately after the 2005 Games. Or at least prior to.
• Fund raising did not occur until late 2007/2008. This is a critical area that greatly impacts on the size of the team and an issue that was high on the agenda when a national Deaflympic review was undertaken by DSA in 2001.
• Whilst M2005 received $8+ million in funding, DSA received $150,000 from the organising committee. Later DSA received $400,000 from the Federal Government for the Australian 2005 Deaflympic Team. (far less than what the Olympic and Paralympic received)
• Whilst the M2005 Games ran on budget, around $400,000 in surplus was achieved which was to go back into DSA and also Victoria. After a lot of red tape these funding have only just become available.
• DSA still receive federal funding that barely covers operational cost (I’m told around $80-$100,000 is received a year) and any increase has been minimal compared to the likes of $20+ million over four years that is allocated to other disability sport. Yet ironically the size of the deaf population (3.5 million +) far exceeds what other disability groups in Australia. Base on this market size and the funding that DSA received that’s about .03 cents per deaf person in Australia and the Government expect them to be engaged in sport/recreation, win countless medals (or at least resolve the obesity crisis)
• In consultation with one major national government department, there are at least 2,000 Australians between the age of 16-22 who have a hearing loss of 55db or greater in the better ear. If we just take 5% of that we would get 100 possible candidates for the Deaflympic Games. Let alone far more for other events such as the Australian Deaf Games.

 People are quick to point the finger at DSA for various reasons such as the perceived lack of leadership, skills and experience of the Board, the perceived lack of action to address issues such as fund raising earlier than later, the competence of the previous board of DSA up to and just after 2005 which are all understandable.

Then people are quick to point the finger at the Federal Government who some say don’t allocate enough funds in order to accommodate and capitalise the largest disability market in Australia.

Then people are critical of national / state deaf sporting associations of not ‘doing their bit’ and undertaking forward planning (as raised in the national Australian Deaflympic Team review in 2001). There is a view that they tend to operate with a short term focus and not something that should be looked at over 4-8 years.

Forward planning is essential for deaf sports in the future. In a media release put out by John Coates (President of AOC), he indicated that ‘we don’t plan every 4 years we plan every 8-12 years’. They have at least a $45m fund raising target and despite the economic situation they have achieved at least $38 million and feel confident that they can reach this target and beyond.

Clearly DSA need to show more leadership and drive and ensuring all deaf sporting associations (including mainstream) are working off the same page. In addition they need to develop a ‘national blueprint’ of what deaf sport should look like in 12 years time. Currently everything is short term focused.

It is not hard to do. However if some states or associations are not prepared to do this then I think DSA need to make some serious and bold decisions in the best interest of deaf sport future. The current model that has been operating for many, many years is simply not working and will continue to see a decline in deaf sports in the future. There need to be a much stronger and committed focus from all stakeholders with clear measureable outcomes. If we are not achieving the annual target then boldly make changes and remove the ‘deadwood’.

There are some signs that we are getting collaboration from state governments and that we have been able to utilise an estimated $400,000 of funds that were left over from the 2005 Deaflympics to allow us to develop programs but these will be short lived if we do not have a nationally committed approach. It is progress but we have missed the wave of opportunity to build on the success of the Melbourne Deaflympic Games.

I previously written to the President of DSA raising a number of these concerns. He responded (8 weeks later) acknowledging, amongst many things, that there is a need for greater collaboration between state and national associations (hearing and deaf) especially in the area of fund raising.

Sport in the deaf community break down barriers and provide a great outlet for sharing of information as well as benefit ones mental health and well being. These sporting communities have been around long before the likes of some deaf societies being built. In many cases some deaf sector organisations have been formed by these deaf sporting people. I would like to think that the deaf sector organisations would see the value of giving back to the deaf sporting community by really giving them much needed injection of funds to take them to another level. I don’t mean funds of around $5-$10,000 per annum. I mean serious funding support whereby it can establish robust programs and significant outcomes.

Two state deaf sports organisations, Deaf Sports Queensland and Deaf Sports Recreation Victoria have turned themselves around and done some impressive work to date but can they sustain this? They are severely limited to what they can do despite a very large market. We have other state deaf sports association who seem to be going a different direction and struggling. This is not healthy.

We don’t have a NSW Deaf Sports Association for over 4 years now. This should not be happening after hosting the 2005 Deaflympics. The NSW issue is a serious concern and DSA need to grab the bull by the horns because this state possess the second largest (depends on who you are speaking to) population in Australia. DSA should simply be proactive, appoint people on a newly established ‘branch of DSA’ whereby they report to the DSA Board (via its Manager) of progress etc.

Also I continue to be fascinated why the deaf sporting community don’t maximise their roles models and utilise them effectively in schools and other mentoring programs. By not engaging or having active people communicating and identifying current and future Deaflympians we are only doing ourselves no favours.

Four years after the Melbourne 2005 Deaflympics, and after millions have been spent on the event and awareness across the country, I continue to bump into young deaf children and their parents who have not heard of or been introduced to deaf sports. This staggers me and raises the question of whether we are doing things right. Four years later and we have yet to see a major increase in deaf people partaking in sport. The last Australian Deaf Games should have seen us with over 1,500 athletes plus officials. However we barely reached the same figure as when we hosted the Canberra (1997) or Sydney Games many years ago (and this was when the word ‘website’ was just coming out).

Around 5th September 2009, national deaf sports bodies will convene in Taipie, Tawain at the Congress for the International Committee of Sports for the Deaf (ICSD) to discuss amongst many things a critical issue in regards to the future of deaf sports. They will need to decide whether a) To continue working vigorously in retaining the privileges of the name-Deaflympics by fulfilling the International Olympic Committee (IOC) requirements; b) return to the name of World Deaf Games with less restrictions and requirements or c) consider full integration with other disabled sport groups in the Paralympics. Each of these will have serious implications internationally and nationally.

Once the Deaflympic Games Flag is passed over from Melbourne, Australia to Taipei, Taiwan in September this year, we will be indicating to the world that whilst we have delivered a very successful Deaflympic Games we have not been successful in our deaf sports development program and the current size of our 2009 Australian Deaflympic Team indicates this. This will be sad reflection on Australian deaf sport history as we should be in a far better position today.

Elvis was on Max Cable TV. I was in a hotel flipping through the channels. There he was with his own private audience. In his black leathers, sitting, singing and  playing his guitar. He snarled, the girls screamed and bopped. I bopped along with them, though screaming may have been slightly out of place in a hotel so I refrained. What on earth was I doing. I have long since flat lined as far as hearing goes but here I was bopping along to Elvis even though I couldn’t hear him. But somehow I could. Whether it was the way he moved, swayed or shook his leg, the music seemed crystal clear in my head. Was I going nuts? Nah, it was just my phantom hearing coming into play.

Elvis can do that. He has a way of grabbing an audience and evoking memories. They showed old clips of him. He had dancing girls, dancing men and choreographed fight scenes in time to the music. As he moved to the music, as the dancers moved to the music … as his face changed and his hips swivelled a whole range of sounds came to my head …   guitar rifts, saxophones, trumpets and even Elvis’s distinctive voice were clear in my head. I lost my hearing between the ages of 8 and 10 and my memory of his music is still clear. In our day we used to religiously watch his movies during the school holidays. Bad as they were we loved them. Can anyone remember the Monkees TV Show ?- Mickey rocked –  Or the Beatles cartoon? – Ringo was everyone’s fave.  There goes my phantom hearing again – “Hey, Hey for the Monkeeees.”

What one hears through phantom hearing  will depend on the sounds that they have experienced. Phantom hearing has been likened to having a limb amputated. You still feel it there and moving, the nerve endings are still sending messages to the brain. Every deaf person will experience deafness in a different way. For example those born Deaf and who have immediate families who are Deaf will generally not experience deafness in the same way as someone who has lost their hearing later in life. David Wright in his book, DEAFNESS, acknowledges this fact when he says, ” Very few are absolutely deaf. Their experience must  necessarily be different from that of the severely deaf, the partially deaf and the hard of hearing. The partially deaf, it seems to me, have the worst of both worlds. They hear enough to be distracted by noise but not enough for it to be meaningful.” (Wright, DEAFNESS, 1969)

Naturally the experience of deafness will vary according to the age of onset. Similarly the ability to cope with deafness will be different as well. Those who have experienced deafness from birth will not fully understand the grieving and heartache that accompanies a person who suddenly loses the sense of hearing that they have relied on all their life. Likewise those that have heard and valued seemingly trivial things such as the birds singing outside the window at sunrise will find it hard to understand the relative insignificance and dismissal of such things from those who have never heard it.

I once had a discussion with a Deaf man from a large Deaf family. I compared his experience of deafness with my own. I spoke to him about his thought process. Because I have heard, when I think I hear my voice is in my head. My voice helps me to analyse, verify and decide. If I am hungry a voice works in my head sorting through the options that I have – ”  A sandwich perhaps? Or a piece of fruit? Maybe a grease attack at the local fish and chip shop?” A little voice in my head sorts through all of the various options at my disposal. But what of my Deaf friend who has never heard? How does his thought process work? I asked him as much.

He thought about this for a while. Surprisingly he found it hard to explain. I asked him if there was a little man in his head that signed to him. He said that this was the case sometimes and at other times it was just a series of visual cues. For example when deciding what he might like for dinner visions of various food might come into his head, fish, fruit, bread etc. He might then visualise the signs that would allow him to explore these options further – “Bread maybe, no” or “Fish, grilled or fried?”  In this sense his thought process was not all that different from my own except it was more visual while my own was more verbal. Of course when I am verbalising in my head I have visual images of what I want to eat too. Different from my friend? – yes, not really, maybe … It was an interesting conversation and one of the very first times that I really analysed what being deaf meant.

But it is not just deaf people who experience deafness in different ways. Hearing people do too. Recent articles of The Rebuttal have been highly critical of Dr Bruce Shepherd and Professor Graham Clark for the misinformation they spout about cochlear implants. Shepherd, I believe, is a parent of deaf children. Clarke , I believe, had a deaf mother. Clark became a Doctor and ultimately pioneered the cochlear implant. I read somewhere that his mother inspired him to go down this path. He wanted a cure for his mother. Shepherd, being a Doctor, perhaps was frustrated that he could not “fix” his children’s hearing loss. The experience of these two imminent Australians, probably and ultimately, shaped their attitude towards deafness. Deafness to them is a sad and tragic affliction that requires fixing at all costs.

What of a child of a deaf adult? CODAs we call them. Some of them have parents who lost their hearing after giving birth to them (Not from giving birth to them). Some of them have parents who are deaf and who predominantly speak. Others have parents who only sign. My own children have parents that move from signing to speaking at will. Some will have been brought up predominantly around other Deaf people in the Deaf community. Some will witness their parents or parent severely isolated within hearing families and the hearing community. The experience of a child of a deaf adult is infinitely variable. I asked my own three boys what they thought of deafness and all three gave a different answer! “Sad” said one, “The same as anyone else.” said another, whilst the third shrugged his shoulders and said “Dunno.” The first later recanted his sad comment claiming that he had misheard me. He said he thought I wanted to know about death! Pushed he said – ‘You can make me deaf if you want. I wont care.”  Needless to say I was not convinced.

If three boys from one family whose parents are deaf can have such varying views then how can we expect society as a whole to have any kind of consensus. And this is the crux of the matter. People experience deafness in different ways. For some it is a positive way of life. For others it hinges between positiveness and frustration. Many just see deafness as the pits and causing complete turmoil in their lives. For others it is to watch on in frustration as a loved one struggles to fit in and overcome the isolation that deafness can inevitably cause. For others it is to see parents living life fully within the Deaf community but struggling within the hearing community – and themselves wondering which community they belong.

For a parent the deaf child is often the first time they have had to confront deafness in any shape or form. Not surprisingly they want their kids to be like them. They want them to be able to hear and speak because it is all they know. So called experts like Shepherd, Clarke and  many an audiologist will feed this turmoil that hearing parents must deal with by providing biased information based on what they see as the WAY! Billy Graham has nothing on these evangelists.

And yes I am rambling. I am rambling because I am trying to make sense of recent events. the cochlear debate rared its ugly head again. Ex aspiring Prime Minister, Brendan Nelson – who is thankfully about to retire, saw fit to host a symposium on deafness and exclude Deaf Australia and the views that they would bring to the table.  Deaf Australia have protested and indeed Deaf people throughout Australia were mightily offended by his actions. For those with little knowledge of deafness the conflict probably seems bewildering. Many will favour the oralist and audist view simply because it is all they know.  Will we ever console these different views or are we forever doomed to be waring factions with our own vested interests.

I don’t know. But in the meantime Elvis lives on in my head. His music and voice forever in my memory. Do I want to be able to hear it again independent of my phantom hearing? Yes cos its what I know but at least I respect and understand all the other scenarios that deafness gives rise to.  But that’s another ramble for another day.