The Rebuttal

Carrie is six years old. She is sitting at the dinner table with her family. She looks down at her Brussels sprout with absolute loathing. She isn’t going to eat it unless it’s forced down her throat. She gazes around at her family members who are all in conversation. Mum is in an animated discussion with her sister. Dad is typically silent, fork in mouth, while he watches Sally do her job as principal on Home and Away. Her two brothers, Aden and Finlay, are discussing something loudly and obviously not agreeing. She looks at her brothers and uses the universal sign for “What’s up?” Palms facing upwards, elbows bent and a shrug of the shoulders. Finlay, with over-exaggerated lip movements, replies, “Tell you later,” while clumsily signing, “Tell you over”.

Carrie sighs and toys with the idea of trying to find out what the others are talking about. In the end she decides not to. She knows that the response from other family members will be the same as Finlay’s “tell you later.” She looks back down at her Brussels sprout. It suddenly becomes more appealing.

The above comes from one of The Rebuttal Classics, Carrie. It is one of my favourite pieces of writing. I watched a parent of a deaf child read this story and she broke down in tears. She said that it was the first time ever that anyone had articulated what it must be like for her daughter at home. “Never again”, said the mother, “Will I ever tell my daughter not to worry. For the first time I have understood how frustrating it must be.”

This is the power of story-telling. Story telling is a much underrated tool in advocacy. Our politicians receive mountains of written information every day. Joanne Duhl is from America and is Vice President of TPI, The Philanthropic Initiative. In an article posted  on the blog Deep Social Impact she writes, “As someone who has been in the field of grantmaking – both in government and philanthropy – I’ve had many, many reports “submitted” to me and, truth be told, too many of these have been put directly on the shelf, where they have remained” Says Duhl, “An emerging trend in grantmaking is helping to empower community members to tell their own stories in a way that builds local capacity to strategically use information. “

Effectively what Duhl is saying is that people are beginning to realise the power of personal experience in creating change. The stories of real people, told by people that have experienced the issues are vital. In today’s age of double speak, where people try to use “appropriate” political speak and diplomacy we have forgotten the power of REAL people.

David is deaf. He comes from a single parent home. He grew up in a country town in NSW. For years he felt alone. He was the only deaf person in his school and seemingly his whole community. In fact he did not meet another deaf person until adulthood. David has a PHD and has published works on the social impact of disability. David talks about how his schooling has left him with deep scars.

“ ..On the bus going home from school I would always try to sit by myself. I liked to sit at the very back of the bus so I could see everyone in front of me. If I could not get a seat at the back I found myself anxiously looking around. I feared that someone would be talking to me and I would not know. I would wonder if they were staring at me, talking about me or making fun of me. Obviously being a teenager I felt a strong desire to fit in. My deafness set me apart from my school mates and I hated it. This fear of interaction and unwanted attention was my constant companion.”

Imagine David advocating for deaf kids. Imagine him talking to Governments. Explaining to them the experience of deafness and how it impacted on him. Imagine David telling his story as a way to create change and highlight the need for better counselling and mental health support for deaf kids. David’s stories carry weight. Why? Well because he has been there and done that. Imagine David collecting similar stories and advocating for increased funding and family support for deaf kids in mainstream settings. He would have, what we call, CLOUT! He has the ability to hit a raw nerve and bring the experience of deafness to life.

Andy Goodman is a communication consultant. Some people may recognise Goodman as the writer of the hit TV show The Nanny. Goodman is a key player in philanthropy in America and advises not for profit organisations of strategies to attract funding and support. Says Goodman, “The fact remains: if your goal is to educate, persuade, or simply connect in a meaningful way with a particular audience, storytelling is the single most powerful communications tool available to you.”

Goodman is not naïve enough to think that story telling is the end product. He points out that data and numbers are needed. But says Goodman, “if a person hears a good story, it is hard to erase the impact with data.” Stories bring the data alive.

The lived experience is something that our advocates underplay too often. Bill Shorten, whether you like his politics or not, highlights the power of real people and real stories in influencing political debate and decision making. In a speech to the National Disability and Carer Congress, 2^nd May 2011, Shorten had this to say;

“..I’d been around the traps. I’d travelled from end to end of our great country – from shearing sheds and steel mills to Beaconsfield – meeting hardworking men and women and listening to their stories. I thought I’d seen it all. But I hadn’t. I thought I knew my country. But I didn’t. My thousand days working with you were more than an education – more than a revelation. They were a privilege. I met a lot of great people and saw a lot of not-so-great things. It was sobering to realise so many of my fellow countrymen and women are literally exiles in Australia, disempowered, shut out of the Australian way of life … and unable to lead an independent life. It was a privilege to be among you when you started to unite into a disability movement determined to campaign to finally make civil rights accessible to all. And, let me tell you, I haven’t forgotten what you told me. I haven’t forgotten your stories.”

You can be a cynic if you want to. You can claim Shorten is all about Shorten. But there is one undeniable fact. It was the stories of real people that moved Shorten. It was these stories that led to the movement that created the National Disability Insurance Scheme movement. It was real people and real stories.

Advocacy is about creating change. To create change you have to know your stuff. That is why it is so important that our Deafness Sector organisations utilise the skills and experience of deaf people. Too often they fall into the trap of looking at a person’s PIECE OF PAPER and forget about the UNIVERSITY OF LIFE. Too often they employ people, imminently qualified academically, but with no background in deafness. It is as if experience in deafness is an afterthought. Often these ACADEMICS are simply playing catch up with deafness issues and left floundering. Often they are just using their role as a stepping stone to their next job. They often lack passion, desire and an understanding of the LIVED EXPERIENCE. As a consequence they often lack credibility when representing the deafness sector.

The lived experience is all too often underplayed. Who do you want representing you? A person with no background in deafness with six University degrees or a person with just one qualification, a life living as a deaf person, a history of tackling barriers head on AND A TRACK RECORD OF CREATING CHANGE.

Well unfortunately in our deafness sector they will go for the six degrees nearly every time. They will forever underestimate the value of the LIVED experience because someone is “imminently” qualified. What I do not understand is why organisations like Deafness Forum and most of our Deaf Societies cannot and do not TARGET deaf people for senior representative positions.

I know three deaf people who are unemployed at the moment, all who have been actively involved in deaf advocacy. One has a PHD that focused ON DEAFNESS. One is a lawyer with human rights background. The other is a person with an MBA. THREE vastly qualified people with not only ACADEMIC experience but also the LIFE EXPERIENCE that is so valuable. Why have these people not been targeted for key roles in the deafness sector? Surely these people have something to contribute. Or are they supposed to just volunteer their expertise?

Deaf sector organisations seek my advice all the time on anything from Aboriginal issues, to the NDIS or captioning. But will they pay me for it? NO! I do it from the goodness of my heart, apparently. The point is that there is a vast pool of talent out there, all deaf and none targeted or utilised by the deaf sector unless it is on a voluntary basis. Something is very wrong.

As Bill Shorten said REAL STORIES and REAL EXPERIENCES are what moved him in his policy direction. The deafness sector needs DEAF people with the lived experience leading them. Out there are wonderfully talented, experienced and qualified DEAF people but the deaf sector does not want or seek them.

It makes no sense to me.

Political Correctness (PC) has a number of definitions under the FreeDictionary.  For example the dictionary defines political correctness as;  “…relating to, or supporting broad social, political, and educational change, especially to redress historical injustices in matters such as race, class, gender, and sexual orientation.” (We will forgive them for leaving out disability) By such a definition I am politically correct to the extreme. It also defines PC as. “… Being or perceived as being over-concerned with such change, often to the exclusion of other matters.” I am not sure that you can really be over-concerned but again, there you have it, I am PC – Absolutely.

BUT scroll down and you will see further definition of PC as; “..avoidance of expressions or actions that can be perceived to exclude or marginalize or insult people who are socially disadvantaged or discriminated against” By this measure I am very unPC. I have a very dry and often black sense of humour. I laugh at a variety of jokes whether they are about gender, disability, sex or death. Often my humour can be very offensive.  Socially, in my aspirations to improve the lot of people with a disability, I am a champion of PC.  Ethically by my use of jokes about sensitive topics I often am very unPC.  Of late I have read a couple of articles by social commentators that have made me question my moral compass in regards to PC.

Shirley Stott Despoja, writing in the Adelaide Review, has written a thought provoking piece, You gotta laugh. Oh no you don’t. Stott Despoja highlights that we often laugh about things that we fear. We fear death, so to make light of it we make jokes about it. We fear losing our hearing so the deaf become figures of fun and so on. ( http://www.adelaidereview.com.au/article/1275 )

Stott Despoja is at loss as to why people laugh at demeaning jokes. She provides an example of dementia jokes that are being circulated among her older peers. Stott Despoja’s stance on this issue is so strong that she even refuses to air the joke publicly again.

She decries the fact that her peers belittle themselves with such jokes. For Despoja this is the ultimate human indignity.  She points out that, “The follies of youth or the insecurities of middle age are hardly ever the subject of such vicious, demeaning and dismissive jokes” This is debatable but the question remains, why do we demean ourselves and others so?  How do people who are experiencing the horror of dementia feel about these jokes?  How do jokes about dementia make the families of dementia sufferers feel? What of those who have early onset dementia? Do they just laugh … “Oh that will be me later, hohohoho.” It would be mortifying for families and sufferers to read or hear such jokes. Regardless so many of us still laugh and make such jokes. Something is not quite right.

Last week I read a piece by the incomparable Stella Young who let fly at journalist Joe Hilldebrand who sent a message via Twitter that read, “I just want to say I think it’s great that Sydney Airport is providing so many jobs for the mentally handicapped” Mr Hilldebrand was not being complimentary. He was frustrated at the effectiveness of the Sydney Airport staff and so saw fit to describe them as being mentally handicapped. Ms Young believes Mr Hilldebrand’s Tweet was offensive because it suggests that people with intellectual disabilities are “Crap”. ( http://www.abc.net.au/news/2012-02-08/young-disability-is-not-a-cute-little-joke/3817824 )

Ms Young suggests that disability is seen on two platforms, the real and the unreal. The real is where people have a lived experience of disability. They know someone with a disability and as a consequence take disability seriously and treat them with respect. The unreal is where people see disability as some sort of fictional fantasy realism. They make cheap shots and jokes about disability. Mr Hilldebrand suggesting that people with intellectual disabilities in the workplace are incompetent is an example of this . Says Young, “…people living with disabilities deserve to be respected because that’s what a benevolent society does – it treats everyone with respect.” Hilldebrand apparently has 15 000 followers on Twitter. His influence is great. But whether you have 15 000 followers or two, suggesting that people with intellectual disabilities are “crap” at work or anywhere is disrespectful and unwarranted.

And people with intellectual disabilities do get it. I vividly recall working with a group of young intellectually disabled people as part of a national job placement program. They would often tell me stories about how they were teased at school or how people would make cutting remarks about them in public places. It had and has an enormous impact on their self esteem

It is worse because many people with intellectual disabilities lack the capacity to fight back. Unlike someone like myself for or Ms Young, for example, who can make a witty come back or write a scathing piece and print it on a national website to defend ourselves. People with intellectual disabilities, and indeed any disability, are often figures of fun and bullied at school. For this to continue into adulthood must be excruciating.

Stella Young herself is an interesting study in PC.  Ms Young seemingly pokes fun at herself as a way of bringing attention to disability issues.  In reality she pokes fun at societies attitudes towards disability. In an article available at Watch Out For Ms Young describes herself as a, ” bona fide cripple, in da wheelchair”  In another interview in The Age, Lunch with Stella Young, Ms Young explains her use of the term cripple. Says Ms Young, “I call myself a crip and people get a bit up-in-arms about it,” She explains that she finds that using the term Crip is empowering not unlike the use of the word queer by many gay people. BUT says Ms Young, “I would never presume to call another person who was disabled that I just met a crip.”

This is probably because not everyone is in a good place about their disability. In a world that tries to NORMALISE everyone many feel that disability is something one must hide. Perhaps for Young being able to use the term Crip about herself demonstrates that she has no hang ups with her disability.  In not presuming to call another person a Crip Ms Young acknowledges it is not the same for every person with a disability and that one must exercise a degree of sensitivity.  This is what being PC is all about.

I am pretty much on the same plane as Ms Young. I delight in being called a Crip by my close friends even though I am deaf. I might moan and groan about lack of captions on the television and Paul, my able bodied friend who has been in the disability sector for 133 years, will say, “You poor cripple.” I accept this as the ultimate sign of acceptance. But Paul would never say that to just anyone. To know when and where you can be PC while being totally unPC  is about having the ‘REAL’ experience of disability. But the ‘REAL’ experience is personal and one should never presume that everyone’s experience is the same. This is why Stott Despoja finds public jokes about disability so offensive, particularly the demeaning ones such as the one used by Hilldebrand. They are not just offensive but they are also dangerous in that they often promote stereotypes of disability as ‘USELESS’.

I still struggle with PC. Stella Young is a prime example. Ms Young is a person with a disability. She is a person who uses a wheelchair. She is a person of short stature, or is she a person with an acquired form of dwarfism? (She actually has a kind of bone condition.)  Or is she just a person? Or is Ms Young a woman with a disability who is a wheel chair user and of short stature? I, who have been in the disability sector for over 20 years, still struggle to come up with the right language to use. In fact I have long since given up trying.

And this is one of my pet hates about PC. You see PC is something that many people hide behind because they cannot accept people with disabilities just as they are. For many on the PC bandwagon being PC is a tool to deny the existence of disability.  We once had the term handicapped. This became negative so they came up with the term disability. Disability referred to the physical condition that you have while the handicaps were the barriers that your disability caused you. Then of course we had deaf, which became hard of hearing, which changed to hearing impaired. But then people took offense to the impaired part and wanted to change it back to hard of hearing. Now we can have people of varying abilities, the differently abled or the access challenged. Men are alternate sex 1 while females are alternate sex 2 (I made that one up) But, my point is it gets ridiculous. For me the ultimate unPC is to try and find a label for a group of people that denies they exist and attempts to NORMALISE them.

But the ultimate-ultimate unPC is for those that represent you to deny you your voice. This is the new age fad. This where a group of five or six people that hide behind the placard of ELECTED representatives decide that we are all wrong and present the exact opposite of what we tell them we want to the Government. To them we are all just faceless people in the crowd making senseless and uninformed noise. To me that’s just as offensive as the Hilldebrand Tweets.

For now think twice about that disability joke you are about to distribute via email of Facebook. The Real experience of many may not match your own and offense is often taken. Worse, like with the Hildebrand Tweet, it can promote negative stereotypes. It is these stereotypes that we people with disabilities are all trying to overcome. Let’s not make it any harder than it already is.

Larry M Bartels in a paper about political representation, Economic Inequality and Political Representation, 2005, makes some interesting statements about political representation. Bartels explains that, “a key characteristic of a democracy is the continued responsiveness of the government to the preferences of its citizens, considered as political equals.” He then goes on to note that, “ But there are a variety of good reasons to believe that citizens are not considered as political equals by policy-makers in real political systems” In essence what Bartels is saying is that our political representatives do not represent the people that voted for them, nor do they see the voters as fundamental to their decision making.

Bartel goes on to point out some of the reasons why representation is not equal. Wealth for example is one factor. The wealthy are likely to have more contacts and more influence. If People who are educated, and thus able to articulate their needs, they are more likely to try and influence decision making processes as well. Those without wealth or without education are likely to have less influence and less ability to be able to express their needs to politicians. This means representation is not as equal as our politicians would have us believe.

The Government, in an effort to provide society with wider representation, often provides funding for marginal groups. These groups might be for Aboriginals, people from Non English Speaking Backgrounds and even ex-prisoners. In the Deaf area we have groups like Deaf Australia, Deafness Forum, Better Hearing, various Deaf Societies (Collectively the Australian Federation of Deaf Societies.) and Deaf Children Australia. Funding is given to these groups to represent the needs of the Deaf to the Government and some of them provide direct support to the deaf as well.

These groups are active. They develop submissions and submit them to the Government so the Government will consider the needs of the deaf for a variety of policy platforms. For example these organisations have submitted responses to the Government about where they see the deaf fitting in with the National Disability Insurance Scheme. Last year they responded to a variety of issues including the review of the DDA Education Standards and more recently the television stations application for exemption to DDA Complaints and further increases in captioning. They are responsive and active, which is a good thing. BUT!

But just how representative of us are they. Returning to Bartels paper let’s try and relate it to the deaf population. Deaf people fall within disability funding. It is well known that the disabled have high rates of unemployment and are generally not in high paying jobs. Consequently, following Bartels principals, this is a barrier on their ability to influence. Born Deaf people can have a number of challenges to achieve good education standards. Many can have literacy issues which impedes on their ability to obtain high education qualifications. Again this is a barrier to their influence. Parents who have deaf kids come from a variety of backgrounds, some wealthy, some not and some in the middle. Parents, especially of new born babies who are deaf, know very little about deafness and this lack of knowledge will impede on their ability to influence also. Who is one of the most influential parents of deaf children? None other than Dr Bruce Sheppard, former President of the Australian Medical Association and strong supporter of Dimity Dornan and the Hear and Say Centres. Rich, educated and of course INFLUENTAL!

Supposedly our deaf sector organisations are representative of the needs of DEAF people and PARENTS of deaf kids. But just how well are they really represented? Let’s look at Can Do For Kids Board in South Australia, a key organisation providing support to deaf kids in South Australia. On their Board, in 2008, they had 11 people. It’s an impressive Board of qualified people. The Board, in 2008, had a Professor of education, a lawyer from a major law firm, a Doctor of otolaryngology, an ophthalmic surgeon, another lawyer and CEO of another major law firm, an optometrist, another lawyer and the remaining people were all accountants. Admittedly one of the lawyers has a long association with deaf people … But clearly to get on and influence this Board you need stonking great qualifications and a fair bit of money. My question is – Where is the consumer and parental representation? One must remember that Townsend House, who auspice Can Do For Kids, also manage the SA Deaf Society, known as Deaf Can Do. Sure the Deaf community are listened to but how much control and influence do they really have on a Board that clearly has a medical and business focus? What real community influence is there?

Not all Boards are made up like the Can Do For Kids Board. Some are made up of a mix of consumers, parents and service providers. Deaf Australia is one of the few Boards around that is probably made up fully of consumers. Other organisations are a mixture of consumers, parents and service providers. But outside of the elected people on these Boards, just how much influence does the average consumer have on these organisations?

Last year, for example, Deafness Forum put out a response to the review of the DDA Education Standards. This was one of the more important reviews that occurred last year. They sent this document to members asking for feedback. The problem was that members only had three days to respond. There were other submissions including submissions to the Productivity Commission about the NDIS. What real input did consumers have to these documents? Of course these documents that form the submissions are aimed at influencing the Government’s policies but are they representative of deaf people or just those on the Board. A few – like myself – who are educated and able to understand the issues put forward will often find time to respond. Usually we get a thank you for our efforts but have no idea as to whether our feedback was used. Of course the papers they ask us to respond to are all written in academic speak aimed at influencing Governments. If you lack the education to understand these submission papers, then what do you do? Certainly in three days there is no way you can get help to have these documents translated. If you want to express your view in Auslan, what avenues are there to allow you to do so?

It is not easy for organisations to consult properly. They lack funding and resources to do this. Often their only recourse is to send what they produce to consumers and hope that they respond. The ones educated and experienced enough will respond. But the average Joe and Jane Blow will not and often cannot. The reality is that it is usually the people on the Board that have the influence and no one else. Our representative organisations, hand on heart, will claim that they have consulted widely. But is a three day deadline to respond really consulting? Clearly it isn’t.

Then of course there are times when consumers actually respond en-masse. Who can forget the Cinema Captioning Campaign. Nearly five hundred people submitted to the Australian Human Rights Commission saying throw out the Cinema’s application for exemption. The responses were there for all to see. What happened? Our major advocacy organisations, as one, ignored all the people that asked for the Cinema application to be thrown out and sent submissions to the AHRC saying that the Cinema application should be accepted. Just who were they representing – the public who fund them through their taxes? Or the people that sit on the Board? Are they really, truly representative of our views?

However, there are signs of improvement but still our representatives will go against clear messages that are being sent to them by deaf people. The recent exemption application by TV channels to increasing captioning is a prime example. There were 53 submissions from individuals and organisations responding to the TV stations application.. Nearly all the submissions were from individuals. ALL OF THE INDIVIDUALS said NO more exemptions. Yet Media Access Australia, who in 2009 actually congratulated and then endorsed the Big 4 Cinemas on their application to be exempt from DDA complaints, ignored the views of the very people they are supposed to represent. The Media Access Australia submission to the TV application to be exempt from further captioning increases is tedious to read. It went here, it went there and it went everywhere. Eventually it reached the conclusion that if the exemption application was not granted that captioning levels might actually fall. Even I, an educated person, could make no sense of their arguments. Yet again MAA showed that they have little regard for the people they claim to represent.

Deaf Australia, on the other hand, got it right. They clearly listened to their community. Their submission, in part read,

Deaf Australia is aware that the Deaf community, whom Deaf Australia represents, has become increasingly:

•  exasperated with the slow increase in captioning content;
• unhappy with the poor quality of some captioning, especially live captioning; and
• resentful of the constant requests for exemptions from complaint and the denial of their right to complain, particularly about poor quality captioning.

In their application, the broadcasters have made the point that when the BSA is amended TV stations that comply with the BSA will be exempt from complaints under the Disability Discrimination ACT. However, it should be noted that they will not be exempt from complaints to ACMA under the BSA if they breach the BSA requirements. For consumers this is particularly important for captioning quality.

Deaf Australia’s view therefore is that while they have for some time served a useful purpose, the time for temporary exemptions from TV captioning complaints is over.  Government has made it clear what is required of the broadcasters, and broadcasters will not be exempt from complaints to ACMA when the BSA is amended. There is no purpose in further temporary exemptions under the DDA.

Deaf Australia therefore does not support the free to air TV stations application for a further temporary exemption.  

 And that is what representation is all about!

To read the responses to the TV stations application to exemption go to:

 http://www.hreoc.gov.au/disability_rights/exemptions/tvcap/2011/subs.html

Last week Stella Young wrote a scathing article directed at leader of the opposition, Tony Abbott. Mr Abbott has publicly stated that he would put any further investment in disability support through the proposed National Disability Insurance Scheme on the back burner until Australia was back in economic surplus. Ms Young quite rightly took offence and pointed out a few home truths to Mr Abbott, ” A stranger will come to your house and shower you. Not daily, of course, because many people who require that kind of personal support are only entitled to two showers a week under the current system. For the other days you’ll feel grotty and reluctant to leave the house, ” Ms Young pointed out Australia’s shame, that they rank last of all OECD countries in the provision of disability support.

Apart from the obvious issue of human dignity, not investing in people with a disability properly means that they cannot contribute to society. They can’t work, they can’t get about, they can’t attend the cinema, they can’t buy things because they can’t earn a good income through employment. They are a wasted resource. This is an estimated 20% of Australia’s population.  Sure not all have disabilities that require significant investment but many millions do. In short to tap into this human talent and reap the economic benefits requires a significant investment.

And this is where the National Disability Insurance Scheme comes in (NDIS). The concept of the NDIS is simple. The idea is that Australian’s, similar to Medicare, contribute a percentage of their income to pay for disability support. This might be .05% of a person’s salary every week which is then channelled back into the NDIS to provide the funds for disability support. It is estimated that upwards $6 billion a year is required to support people with a disability to access society. Currently the Government does not even provide half of that.

The current Government has asked for 7 years to roll-out the NDIS properly. Many say this is too long. The opposition do not even want to consider the NDIS until Australia is in surplus again. Sceptics point out that for the most part, when the opposition was in power, Australia was in surplus but they still did not invest in disability properly. So why should Mr Abbott be trusted now.

The bottom line is Australia needs to increase investment in disability drastically to un-tap the full potential of people with a disability. The NDIS is crucial. For deaf people the NDIS could, potentially, bring untold benefits. The problem is that the deaf sector has been very quiet in the debate. So quiet that they run the risk of missing out on the benefits of the NDIS altogether. Debate on the NDIS has been very much dominated by the issue of care support. By this I mean home support and respite for people with severe physical and intellectual disabilities. Don’t get me wrong,  care is a very underfunded area and needs all the attention it can get. BUT the NDIS needs to be about more than just care and respite. The Deaf sector needs to be more actively involved in the development of the NDIS or run the risk of missing out.

To understand just how the NDIS can benefit deaf people one needs understand that the NDIS funding , if all goes to plan, will be very much self-directed funding. What this means is that the person with a disability will receive the funding and, within certain guidelines, will decide how that funding is to be used.

What will basically happen is that the NDIS will be set up as an agency. Eligible people would apply to the NDIS for funding. Most likely they will have a choice. They can opt to have a person assist them to organise the supports that they need OR they can opt to receive a lump payment every year and direct that funding to buy the services that they require. Of course they would need to demonstrate, probably by way of invoices, that this money had been used appropriately to purchase the right types of support and show that they are not abusing the system.

Let’s pretend the NDIS has been set up brilliantly and provides for everyone with a disability including the deaf. Peter Deafapple  goes to the NDIS agency and outlines his needs.  He has social needs every year for things like attending parties, weddings, funerals etc. He wants to do some extra study and needs live captioning for that. He has a cochlear implant that costs money to maintain. He needs technology like smoke alarms in his new home. Of course this pretend NDIS is flawless. Peter has an assessment and it is estimated that his needs for the year are $75 000. He gets that amount of money which he must use to meet his needs as identified. Some of that goes to an accountant to look after the money, spend as needed and provide the necessary evidence to the NDIS agency.

Peter uses his funding as needed. He attends a wedding and books an interpreter. The interpreter agency invoices Peter’s accountant, who pays the bill and forwards necessary paper work to NDIS on Peter’ behalf. Through the year Peter’s Cochlear processor dies and it needs replacing. Peter has it replaced immediately using funds he has received through the NDIS. He organises his captioning at University without the need of having to apply for it through the University disability support. He is in complete control and directing his funding as he sees fit.

Not only that, Peter has POWER. He does not have to beg and plead with his local Deaf society to get access to funds to attend his dearly departed grandmother’s funeral. He calls and organises it himself. Agencies that provide services must develop services to meet what PETER and other deaf people want at competitive prices.  They do Peter’s bidding rather than the other way around. If the service is not up to scratch Peter simply goes somewhere else that provides better value for money. No applying for vouchers, no hoping that there are enough funds to provide the service that he needs, no being patronised and made to feel grateful. Peter is THE MAN.

Imagine you are a parent. You want the best Auslan tuition or speech therapy that you can get for your child. If you want to ensure your child gets the best access to language development that is possible there will be no need to worry whether the Education Department can spare an overworked speech therapist once a month. There will be no being at the mercy of some service that decides that Auslan tuition is too expensive and provides it only as they see fit. The parent has the power to direct their money as needed. The services either meet the needs of the parents or go out of business.

These are examples of what is possible if the NDIS is developed properly and considers the unique needs of all people with a disability. This is the dream. For now it remains a dream, especially for deaf people. The deaf sector has not yet fully grasped the potential of the NDIS. It has been largely silent and needs to speak up. It must become more actively involved in the NDIS debate.

As things stand the NDIS debate has been largely driven by carers. This is understandable in many ways. There are carers in retirement who are still looking after their adult children with a disability. Funding for respite care is minimal and is nowhere near enough to meet demand. People with physical disabilities, as Stella Young pointed out, are at the mercy of an underfunded system and cannot have their basic hygiene needs met. There are young people with a disability being cared for in nursing homes for the aged because they system simply cannot meet their needs. It is shocking.

While these needs are extreme it does not mean that the deaf have to miss out. To tap into the benefits of the NDIS the Deaf sector has to become more actively involved in the NDIS debate. Recommendations have been made, for example, that education and employment needs not be part of the NDIS. For working age people who are deaf this is arguably the biggest area of need. While there are some great programs in employment, these programs do not come close to meeting the real need. Potentially the NDIS can help fill this gap. This is part of the reason why the deaf sector needs to find its voice in the NDIS debate and fast.

Deafness Forum has made several statements about the positiveness of the NDIS. Most recently, in August 2011, they spoke of the need for Communication access because, “Communication access is life” President David Brady spoke about the impact the NDIS could have on the purchase of digital hearing aids.  There were noises about the need to provide access to WORK, but the initial recommendations of the NDIS by the Productivity Commission is that employment not be included as part of the NDIS.

While these are positive statements by Deafness Forum it is not enough. We in the Deaf Sector need to be thinking about the best way the NDIS can meet our needs. Pacifying statements of intent and support to the Government, while useful, are not enough. To benefit from the NDIS the Deaf community needs to find its voice in the NDIS debate NOW or we may all end up remaining in silence.

William Lutz, Professor at Rutgers University perceptively comments,  “If there’s one product American business can produce in large amounts, it’s doublespeak. Doublespeak is language that only pretends to say something; it’s language that hides, evades or misleads.” Double speak is the art of saying one thing but meaning another. In today’s age double speak is rife. We have, unfortunately, almost reached a point where plain speaking truth is seen as wrong, rather than the norm.”

You can no longer approach any organisation with a simple question and get a straight answer. You might, for example, ask something as straight forward as, “How much did you spend on services last year?” The answer you will get will be either, “I am unable to divulge this information as it is commercial and in confidence.” Or you will get, “ We are committed to increasing our expenditure on services, we are committed to targeting a percentage of revenue towards services.” Answers such as these are designed, of course, to tell you nothing or simply to hide the plain truth

Recently after Deafness Forum found themselves short of a CEO I made enquiries about what was happening to fill the position and even offered to assist them knowing that they were under the pump with the Deafness Summit coming up in April. I got a standard reply that, ” The board and I are exploring options and are currently receiving advice from our major funding bodies on plans moving forward.  This will take a month or so as you do understand being an ex-board member that we are all volunteers.”  Within a month the position of CEO had been filled, without advertising. Clearly the Board had been active in seeking someone well before I had even contacted them. This is fine, but why not just say,  “ We are acting quickly to fill the position and are negotiating with a suitable candidate to fill the position in the short term. We will not be advertising because the position needs to be filled quickly owing to heavy commitments of Deafness Forum in the next few months”

Ok, sure I would have loved the job but what bugs me is the lack of transparency. Sure I would have targeted Deaf and hearing impaired people for the job. Sure I don’t agree with how they did things, but is their right to do what they think is best for Deafness Forum as an elected Board. I would much prefer them to say, “Well Gary we don’t think you are a suitable fit for the job, you are too out spoken and critical. We want someone less political and controversial.” Sure I would have been angry at this but I would have respected them for their honesty. Of course they would never say that. They would say something like, ”Thank you for your interest. You are clearly very experienced and skilled. We will give your application all due consideration.” Then of course they would put it in the drawer and forget about it hoping that would be the last they would hear of me.

Now everything I have written above is purely speculation. It’s quite possible nothing like this happened at all. It is quite possible that when I originally contacted them that they were seeking advice from their funder. It is possible that within two weeks that they had received that advice from their funder, did a head hunt, found someone suitable, contacted them, contracted them and set a start date. Anything is possible.  After all they are all volunteers right?

And of course me writing this could all be construed as sour grapes, couldn’t it? OK I will admit,  in the pursuit of honesty and openness,  I am mightily miffed that I can’t get due consideration for the job. But it’s not really sour grapes, it’s more sheer frustration that people can no longer be up-front and honest. I know the chair of Deafness Forum, he is a top bloke. I had a beer and debate with him at the recent Australian Deaf Games. I write this because I know he will take it in the spirit that it is meant. All I am seeking is some honesty and transparency of process. This very simple and worthwhile concept, OPENESS, is eating at the very soul of our sector and it saddens me.

Truth and its purpose have been debated for many years. Ancient Greek philosopher, Plato, asked ..“And isn’t it a bad thing to be deceived about the truth, and a good thing to know what the truth is? For I assume that by knowing the truth you mean knowing things as they really are.”  This train of thought holds true today. Best-selling author, Spencer Johnson, stated, “Integrity is telling yourself the truth, honesty is telling others the truth.” Ethically we know that telling the truth, being open and transparent is the right way to go about things, yet still we chose strategies like double speak or hiding behind imagined legal barriers to hide the truth. We all have become so self interested that we have forgotten the big picture.

We have reached a point where we can no longer say something that is the absolute truth. It is seen as the ultimate no-no to say something like, Captiview is a DUD. (I actually prefer my friend John’s label – CRAPTIVIEW.) We have to water things down. We have to portray a false sense of positiveness for fear that our decision makers will take their ball and go home. Rather than say Captiview is rubbish, and it is, we have to resort to double speak and say something like, ”Captiview is an innovative technology that has brought better access to the cinema. There are some challenges in its use ….”   When the community expresses its view with passion, immediately there are people who try to cover it up and portray a false sense of positiveness. WE MUST NOT BE NEGATIVE.  We have to PLAY the GAME!

What happened to the days when you could let people know what you really felt.  Years ago we were encouraged to protest. Hell we had a mass campaign where we rang people on the TTY all day and blasted them with a TTY beep so that they could understand the need for a National Relay Service. We protested outside an Oral school because some guy was giving out misleading information about the effectiveness of hearing aids and how sign language impeded speech development. We protested outside the Surf Life Saving Club at their refusal to allow a deaf girl to try for her bronze medal on the grounds she could not use a walkie talkie. WE showed good old fashioned passion and feelings.  Today we would be hushed up for fear of upsetting FRIENDS of INFLUENCE. God forbid if we talk out of school, we may even lose OUR FUNDING! There is no such thing as an impartial organisation anymore.

Now we must have friends. We must put up photos on our websites showing us smiling with all the influential people we know. We have to be seen smiling with the PM and the Opposition all at once, just in case the other becomes PM and we need their influence to retain our funding. Ok it helps that we have friends on the inside but not to the point where we fear telling the truth lest we put them offside. It is sad but we have reached a point where WE FEAR THE TRUTH.

George Orwell in his classic book, Animal Farm, highlights just how the disability sector work today in this brilliant passage, “..No one believes more firmly than Comrade Napoleon that all animals are equal. He would be only too happy to let you make your decisions for yourselves. But sometimes you might make the wrong decisions, comrades, and then where should we be?”  And because we are all seen as ignorant, we are fed half-truths, double speak and worse even patronised. A band of a few decide that they know what is best for all of us. They tell us only what they THINK WE NEED TO KNOW.

Just tell us the truth, be open and transparent. If you have done nothing wrong there is nothing to hide. People may not agree with the decisions of others but they will respect these decisions more if integrity of process is displayed. As Mark Twain said, “Of all the animals, man is the only one that lies.”  Twain also said, “..A half-truth is the most cowardly of lies”  It is within us to change this mentality of double speak, lies and thought control. Who among us is brave enough to start?

PS – I am well aware that this piece will do me no favours professionally, but hell someone has to practice what they preach.

Business is fraught with risk. In one stroke of the pen or one flash of misjudgement millions and even billions of dollars can be lost. Relative novices at business can pull a master stroke and make millions whilst so called experts can lose billions in a second. Take for example Ross Perot who in 1979 passed up the opportunity to buy Microsoft. Perot at the time owned Electronic Data Systems that were worth more than a billion dollars. He decided that the young Bill Gates was being cheeky and asking too much for Microsoft. Apparently Gates was asking $40 to $60 million. Today Microsoft is worth $224 Billion. Perot must be kicking himself!

Perot is not alone in making dud business decisions. Coke lost millions in 1985 when it changed the flavour of Coke. Market testing would have told it that the tried and original formula did not need tampering with. Instead it went ahead with launch of the new Coke and people switched off in droves. Realising its error Coke relaunched Coke Classic to recoup the lost ground in the market. Although Coke made an error they were not so stupid as to ignore their market. They quickly rectified their decision and the rest is history. Dud decisions are made all the time. The smart people realise their errors and fix them.  (The Perot  and Coke stories, along with other fascinating business duds,  can be found at http://www.businessinsurance.org/10-worst-business-decisions-in-history/ )

The smart movers and shakers identify very early when their decisions are not hitting the mark. For Perot it was a missed opportunity. What Perot failed to do was recognise the real potential of Microsoft and missed a gilt edged opportunity that he could not reverse. Perhaps he was just a wee bit too arrogant and stubborn. Coke, on the other hand, had a process for evaluating its decision. Harrison, in a paper, HOW TO FIX A BAD DECISION, outlined a number of key principals for evaluating bad decisions. Essential principles included having an appropriate time frame to evaluate whether the decision is going to plan, developing criteria to measure whether a decision is achieving its objective, sticking to the facts and LISTENING TO OTHERS. Coke clearly did all of this and wasn’t too proud to own up to its mistake. (Harrison’s paper can be found at, http://www.cuttingedgepr.com/articles/how-to-fix-bad-decision.asp  )

What does all this have to do with The Rebuttal, a rag that debates deaf issues? Well it brings us back to one of our pet grievances, namely the introduction of Captiview. Of course Captiview is the technology that the Big Four cinemas are introducing to provide people who are Deaf and hearing impaired with access to captions at the movies. Captiview is also part of the Big Fours strategy to address their aversion to open captions.

Now the Cinemas had us believe that Captiview was the answer! It was going to provide Deaf people with access to a range of movies like never before. We were going to have choice, and by 2014 there would be 214 cinema complexes providing a range of movies accessible with Captiview. That was the spin anyway.

Our advocates and our politicians were quick to jump on the band wagon. The roll-out of Captiview could not happen quick enough. People were claiming credit left, right and centre. Access to the cinema was here and now! BUT one voice said WAIT, trial it first and test the market. He was out voted and derided as being negative.

The problem here is that the Cinemas refuse to see the Deaf and hearing impaired as a market. To them we are a welfare case that they are HELPING! That three to four million people plus their families and their friends are a substantial market wanting access is not obvious to them.

The result of this is that the Cinemas, our advocates and the Government are refusing to follow basic market principles in the roll-out of Captiview. They are investing thousands without a proper market process. Simple wisdom, as outlined by Harrison, will dictate that the Cinemas should trial and evaluate within an agreed time frame, collect the facts, listen to the feedback and then decide on a way forward. Instead of following a very basic and common sense formula the Big Four are telling the Deaf and hearing impaired that they must like it or lump it.

So the Cinemas, with some substantial Government support, have decided that Captiview is what we must have. This is despite the obvious fact that Captiview is clearly a DUD. The business acumen being displayed by the Cinemas in the roll-out of Captiview is, to put it mildly, lacking. Perot and the Cinema bosses must be best buddies. The scandal is that not only are they wasting their own money but also a substantial amount of tax payer money too.

If we followed Harrison’s principles the Cinemas would have trialled Captiview for a period of time, preferably with alternate technology to make comparisons. They should have agreed on an evaluation report at an agreed time to see if an investment in Captiview was worthwhile. They should have collected the facts, listened to the users and then made a decision on a roll-out. Simple common sense should have dictated. But they did not follow these basic principles and many thousands, if not millions, of dollars are being wasted on what is a DUD business decision and DUD technology.

And what are the facts. Well one only needs to go to the Action on Cinema Access Facebook page for feedback. Here is a collection of comments. “The Rear Window Captioning was way ,way, way better than Captiview ( well anything has to be better doesn’t it?)” – “I just can’t get comfortable – you have these tiny green captions which are disproportionate to the size of the screen. God help you if there’s action that you don’t want to miss!” –“Watching The Muppets with family using Captiview at Forest Hill. Ten minutes into show and still no captions”. – “If you want to use Captiview it is like applying for a housing loan. You need a licence, credit card and have to sign for it! What’s worse when I signed I could see all the names of the other people that had used it.” – “Bought ticket and had lunch prior to the movie… Only to find out that the system is not working!!!!” – “I used the Captiview device for the first time and I do NOT think it is a good idea for the deaf patrons. I had to laboriously move my face back and forth between the movie and the device to get full access to the story.”  It would take all day to put all the negative comments about Captiview on here, suffice to say there is not ONE positive comment on the page about Captiview. These are the facts, and they are not just Deaf people, they are hearing impaired too. THE SYSTEM IS A DUD!

So why are our decision makers continuing to invest money in a system that the market do not want? Coke saw sense to bring back Classic Coke the minute they realised that it was what people wanted. Yet our decision makers tell us we must accept Captiview or lump it. Can you imagine Coke telling customers to like or lump the new Coke? No, because the customer is always right. They respond to the market.

Will the Cinemas continue to invest in a DUD in the face of clear market feedback? Or will they persist with something obviously loathed? Ironically IMax have recently trialled Rear window Closed Captioning and before investing en-masse have sought customer feedback first. They have offered free tickets to the deaf so that they can get proper feedback. Not only does that show good business sense it shows good old fashioned respect! Will the Big Four Cinemas follow their lead?

EDITORIAL COMMENT

Ok, we know! The Rebuttal is criticizing Captiview again. We have written about it many times and we have been none to complimentary. This article is no different.

The problem is that the people in control, the people making the decisions on our behalf, appear to not be listening. In a way this is understandable. They are working hard to give us better access and all they are receiving is flack. They must feel that we are ungrateful and shallow.

The issue is not one of gratitude it is one of simple common sense. What these people in control need to understand is that we deaf people do not want to be HELPED we want to be seen as a viable market and have a product provided to us that is value for the money we spend.

The Rebuttal has been asked to tone it down. We have been asked to give the technology a fair go. We have even been accused of having a conflict of interest in being involved in the captioning campaign and being critical of Captiview through The Rebuttal. We have been accused of using privileged information to cause trouble.

This is, of course, nonsense. What we at The Rebuttal do is listen and present the consumer view of Captiview. And so far that view has been unflattering. Any information we provide is simply public knowledge. Nothing underhand and nothing we say is privileged information.

The feedback coming from the consumers is clear, Captiview is a DUD. It detracts from consumer enjoyment, it is uncomfortable to use, it is not good for children, people with vision impairments find it hard to use and worse, it often is not even working.

Just yesterday one of us went to watch a movie with Captiview. The movie was the Girl With the Dragon Tattoo. Admittedly a great movie but ten minutes into the movie the captions had not come on. An usher had to be summoned to get the captions going. The movie was three hours. The constant re-focusing from movie to Captiview device was tiring. Some captioning appeared to drop out and when trying to read the captioning large chunks of the action was missed. It was not comfortable viewing.

Anti-Captiview feedback is coming thick and fast. Not only in Australia but also overseas. The Rebuttal is part of an Internet captioning discussion group. Feedback about Captiview overseas mirrors the feedback that is coming from Australia. Captiview is a much-loathed device. It is a DUD.

Some say that there are many hearing impaired people that actually like Captiview but are not voicing their view. Nonsense! Positive feedback on Captiview is almost non-existent. The most positive we have seen is that the device is tolerable and provides more access to more movies.

As paying customers we demand quality. Captiview simply does not provide that. We at The Rebuttal are not ungrateful for the efforts that people are making to increase access but it needs to be said that Captiview is not the answer. The roll-out needs to be stopped now. Let’s find a better technology before any more money is wasted on this DUD!

The paradox in life is that for us to experience the highs in life we must also experience the lows. Opposites form the basis of many philosophies. Ancient Greek philosophers often articulated the needs for opposites. Simple opposites such as good/evil, sweet/sour, happy/sad, fast/slow- these are what allow us to experience and appreciate things. Without evil we would not understand good, without sour we would not comprehend sweet or without sadness we cannot appreciate happiness. Yin and Yang principles are similar – Each experience of life depends on an  opposite to exist. The debates of opposites and why they are essential have been raging for thousands of years. But still our society wants everything to be the same.

Opposites are what create diversity. Diversity is what makes up our society. We have fat and thin, Black and White, Male and female, gay and straight – and of course disabled and non-disabled. For the Deaf who don’t want a bar on disability let us say Deaf and hearing. The complexity and diversity of our society is what makes it interesting. The diversity is what motivates us. We see someone with more than us and we strive to be that way, for better or for worse.  Sometimes, like last night’s Australian Open Grand Final Tennis, we can only sit back and admire just how brilliant and healthy humans can be. We might never reach that level but knowing it is possible can motivate us to strive for that little bit more to make our lives more fulfilling.

Yet even though we know that opposites and diversity are what make us tick we still, as a society, try to create a society where EVERYONE is the same where conformity is the norm. Nowhere is this more obvious than Societies obsession with curing disability.

Perhaps I think too much but this train of thought began with my friend Craig’s Facebook status. Craig provided a link to a petition in the US.  http://signon.org/sign/stop-stem-cells-experiment.fb1?source=s.fb&r_by=2115974  The petition was to call a halt to stem cell experimentation aimed at wiping out deafness. The Deaf Community in America have called on President Obama to ban such experimentation. They believe it is genocide and an attempt to wipe out the Deaf community.

This brings rise to a number of opposites that are in play. Deaf and hearing is an obvious one. Sick and healthy is another (But we are not sick you can see the Deaf community screaming at this one. ) Then there is of course the opposite of desirable and undesirable. Clearly there are many hearing who feel deafness undesirable whilst the Deaf see it as desirable.  The more extreme of the Deaf will see hearing as undesirable and deaf as a state of wellbeing. The paradox of all these extremes is that we need them all. We need them so that we can measure, understand and retain what we value.

Imagine if all people felt that deafness was bad.  We would be going headlong into eradicating deafness. Possibly we would have the extremes like Hitler where there was enough belief in a superior state of being to create a philosophy of one is BEST. Hitler believed in a ONE BEST and in striving for a ONE BEST believed that all those seen as less superior had to be wiped out. The Jews had to go and the disabled were to be killed at birth. Only the so called SUPREMELY white and healthy, unblemished were to survive. Or in Hitler’s words the MASTER RACE – A race of white super beings! The rest were just subversive beings to be eliminated or to serve the needs of the MASTER Race.

And for a while it seemed Hitler might get his way as he marched his merry way to take over the world and eliminated millions of so-called undesirables. BUT it was not to be. WHY? Well because there was an opposite.  The opposite was, of course, the view that we are all equal and no one person is better than the other. And as one the opposites rose to challenge Hitler’s ascendency. Sadly millions died in the process. Perhaps these deaths were necessary if only to show just how abhorrent Hitler and his views were. Imagine if we had all thought like Hitler and the opposing force didn’t rise to challenge him? What sort of world would we be living in? Thank god for opposites even though its mind boggling that there were, and still are, so many that actually agreed with Hitler’s despot views.

And so we have people that want to wipe out deafness. There are people that want to create a society of super healthy unblemished people who fit the norm. The problem is that in this debate the line between good and evil is not as quite clear as it is with Hitler. You see all the people in this debate are right. They are all striving for a better world.

Last year Dimity came in for flack. She enraged the Deaf community with her views that deafness could be eradicated from our lives, “just like polio” But is Dimity an inherently bad person? No she is not. She believes absolutely in the philosophy that she promotes. The paradox here is that Dimity, by coming out and making such extreme statements, aroused the passion of the opposites. So enraged were the Deaf and their associates that they voiced the opposite view using whatever was at their disposal in the media – Websites and blog-posts, TV and Radio, newspaper columns all were alive with the debate. In fact Dimity did the Deaf community a huge favour – she aroused a sleeping giant and allowed society to see that there was another point of view. If Dimity had remained silent what might have happened? Well for a start millions of Australians would never have known that there was, in fact, an opposite view. Opposition to Dimity’s views would have been mute. The Deaf community would have been one step closer to its grave.

And this is the case with the petition to ban stem cell experimentation. It arouses a sleeping giant. It brings other views to the forefront. But what we should not do is see proponents of Stem Cell research as an evil. They can grow limbs for amputees, cure those with spinal injuries from horrific car crashes and eliminate painful diseases and conditions. Of course there are many who will say this is not ethical, that it belittles those with a disability and makes them seem undesirable. But how many Deaf out there would jump at the chance to be cured if they unwillingly found themselves a paraplegic? It is not black and white. We may not agree with the views of others but it is these opposite views that allow us to realise and value what we have.

Where we go wrong is to become extremist.  Like Hitler we become despots. People begin to advocate violence. This happened with Dimity where people began to circulate offensive graphics of Dimity with blood pouring out of her and with a gun at her head. All we need is debate that is calm, civil and passionate. But let us not mistake passionate for violence and extremism. Be thankful for the opposites like Dimity and stem cell researchers because it is through them that we are allowed to exist – But that does not make them wrong and us right – it is just a state of being – the Yin and the Yang!

1000 or more people attended for the Australian Deaf Games in Geelong from the 14^th to the 21^st January. What a time they had! New friends were made, old friends reacquainted. Parties were had, ceremonies attended. Relationships flourished and love blossomed. For the Deaf who attended, and a large smattering of hearing people too, it was a social Utopia. Somewhere in there 16 sports competed for the John Lovett Cup but the sport seemed almost inconsequential.

Those who attended had a blast. Social Network sites were alive with comments about the great time that people had. To all who attended the Games must have seemed a smooth flawless a operation. Everything was organised and ready. The City of Geelong made millions from the Games for a relatively tiny outlay. Accommodation was paid for, cars hired, food eaten at restaurants, taxis caught to venues, tourist attractions visited and merchandise purchased. Make no mistake Geelong made a mint. 1000 deaf people turned Geelong into a virtual Deaf town for a week. Yet again Deaf people demonstrated just how much they contribute to the economy.

And all of this was organised by Deaf people and two full-time employer’s at Deaf Sports Australia. I was fortunate to be part of the Games Organising Committee. My role was transport. Other roles included Volunteers coordinator, interpreter coordinator, venues coordinator, sports coordinator, medical coordinator, finance coordinator, events coordinator – Nearly all of these roles and responsibilities fully voluntary and manned by Deaf people. Consider that many of these positions during the 2005 Deaflympics  in Melbourne were FULL-TIME PAID POSITIONS.

Despite the outward appearance of efficiency it would be misleading to assume that the Games were organised without hitches. There were problems, lots of them. There were financial scares. There were conflicts. There were complaints. There were last minute scrambles to fix problems. But with aplomb the Games Organising Committee handled them all and for the most part everyone who attended the Games had very little to worry about except to rock up and have a good time.

Sure it can be done better. I know that some sports became very frustrated, even angry that things needed to be fixed at the last minute. Strong words were said. A few tears shed but still these issues were overcome. In the background there is always drama but it is how you handle this drama that is important. Whatever was thrown at them the Games Organisers dealt with and full credit to them for that. Yes for some it was very hard but we live and learn. What we have all learnt will make the next Deaf Games even better. All of this will come out in a review of the process. Whatever mistakes were made, let’s not take away from all the members of the Games Organising Committee who all did a marvellous job.

What the Games highlighted to me, apart from the fact that the Deaf community is alive and well, was the vast array of talent that exists among Deaf people.  I can’t say just how much the Games cost but it is likely to be in six figures. It would not surprise me if one calculates all the voluntary contributions and in-kind suppport that it was in excess of half a million dollars. Sponsorship needed to be obtained, registration processes set up, online payment systems established, websites developed, accommodation and transport sourced, the Games promoted, insurance organised day to day logistics worked out and dealt with – The list goes on and on. And nearly all of this was done by Deaf people.

Many organisations would employ event organisers to do this. Consider for example that as part of organising the Games more than thirty meetings were had. This is just the Games Organising Committee. Many other meetings occurred through Deaf Sports Australia. And then of course there were the countless meetings that were organised as part of the host city bidding process. What a process that was with Geelong pipping Wodonga by the skin of its nose. The Games organising Committee exchanged in excess of 3000 emails. This band of skilled and dedicated volunteers saved Deaf Sports Australia hundreds and thousands of dollars.

Indeed I took the Liberty of researching how much an event organiser charges. It can be anything between $75 to $150 an hour. Some charge per person through the gate. Some charge a percentage of the overall turnover. Either way Event organisers are NOT CHEAP!

Let’s say 30 meetings at three hours each, that’s 90 hours. Consider that each individual Games Organising Committee member probably spent an additional 50 hours organising their particular portfolio. 10 times 50 and that is 500 hours. During the games 10 GOC members were on duty all day for 8 days as well as DSA staff and Board, the hours that they put in cannot be calculated. Myself as transport coordinator I was, for the first three days, working 15 hour days with little respite. Pre-Games meetings and individual portfolio responsibilities alone, if charged at the lower rate of $75 an hour would have cost Deaf Sport Australia $44 250. How do you calculate the value of the volunteer interpreters, 96 day to day volunteers, sports conveyors organising the day to day sports program … The cost is easily in six figures. And all of this by Deaf people!

And how much did the State Government contribute to the running costs, well AI Media captioning at the Closing Ceremony said $15 000 but I read Andrew Welshe’s signing at the closing as $50 000. Either way it was a paltry amount for what is one of the oldest sporting events in the world. But money didn’t matter. By hook or by crook DEAF people made it happen. By sheer skill and perseverance they put on a Games which were enjoyed by the majority of all who attended.

This skill and tenacity is what exists in the Deaf community and among DEAF people. Now why isn’t our Deaf sector head hunting these Deaf people to work for them? Their sheer passion and commitment alone is worth its weight in gold. Deaf people have talent in spades, its time our Deaf sector used this talent and PAID for it. Well done the games Organising Committee – You made the impossible possible and it was no FLUKE!

Many years ago Australians with a disability and Deaf people had to be grateful for what they received. Traditionally Australia, and indeed the world, looked after people with a disability through charity, and in many ways still do. This is no more so than in the Deaf area where the Deaf societies, and indeed even our advocacy organisations, are registered charities. If you are active in the deaf sector you will receive a constant stream of emails requesting that you buy lottery tickets or support the noble cause of Charity X. You can still find organisations that will pay deaf people a pittance to rattle tins on corners and even door knock to raise money. The attitude seems to be raise money any which way and bugger the consequences. The Rebuttal has written about fundraising before and caused great controversy in doing so. You may want to revisit that article, The Slums of Mumbaih  at  http://the-rebuttal.com/?p=490

This charity mentality in Australia keeps people with disabilities and the deaf in the dark ages. It keeps us in the dark ages because when people give, it is common courtesy that one must show gratitude. Someone pops a coin in your tin-can, you give it a rattle, beam a smile and thank them profusely. Don’t get me wrong I think it’s great that people are willing to help but the thing is that charity is giving, as John Howard was often fond of saying, to the less fortunate. The paradox is that giving brings out the best in us but in terms of the disability and Deaf sector this giving to “the less fortunate.” mentality often does more harm than good. In fact I would go as far as saying it is one of the biggest barriers for progress for the disabled and the Deaf.

The Rebuttal has spoken often of the “Disability Economy”. Thousands of Australians rely on the disabled for their income. The CEO of your local, humble and caring charity takes home his flash car because of us. The case workers, the support workers, the audiologist, the speech therapist, the physiotherapist, the doctors and the innovators that come up with ground breaking technology all live off the disabled. Without us thousands will be out of a job and millions, nae billions, of dollars will go missing from the economy. Last year Cochlear announced a record $377 million profit. Sales were up 8%, revenue increased 17%. Good on them. But dare call us a charity when a tiny proportion of us are creating that much money for the economy. Hearing aids, hearing aid batteries, listening devices, Auslan interpreters, captioning (just ask AI Media who got a $1.7 million grant from the federal Government recently!) .. it goes on and on … We are goldmine make no mistake. Yes, The Rebuttal has discussed this before but still it astounds us how much deaf people alone contribute to the economy simply by existing!

The smart business people know that we are a substantial market. Cochlear doesn’t go about telling people that we need to be grateful to them for making a device that for many has opened up the world. They simply promote their device in a positive way. They give back through sponsorship of events and conferences too. Or AI Media doesn’t make itself out as a company that SAVES deaf people through access. It is simply out there, in your face, letting you know it has a service. And it ain’t free they are doing very well financially thank you very much! They too give back through sponsorship. The Captioning Studio is the new kid on the block. They too are constantly in your face. By all accounts they are a far superior service too and this is shown by the number of awards they are winning. What these companies have in common is that they are GRATEFUL to us …Cos hell they are getting rich on out account. Good on them for that too, it is what free enterprise is all about.

The point of all this is that we have substantial market power and the smart business tap into it. The dumb ones, and there are many, continue with their welfarish mentality. They continue to promote the idea that they are HELPING us and we need to be grateful. Never is this more obvious than with companies that have to PROVIDE to meet our needs. And who might these people be apart from the obvious well let’s out a few, namely the Big Four Cinemas, free to air TV and Pay TV.

Of course to them they see us as a burden. A cost! Because they have to pay extra for our captioning and they don’t want too. You have a market here of three to four million. You don’t just have deaf people but you have their families and friends too and this expands the market even further. When deaf people get access to movies and shows they watch with their families, not in isolation. You can count the number of times I have watched a movie with my lads at the Cinema on one hand because simply there is no choice.

Pay TV, namely  Foxtel and Austar are among the worst offenders. In 2011 Foxtel increased its profits by 15%. They are more profitable than free to air TV yet they provide the most appalling access to captioning. When they do provide it the quality is deplorable. Why? When potentially if they provided better access they could increase their market share even more? If they were smart they would INVEST in more captioning to attract more paying customers. But what do they do when one complains and asks for more? They give you free Lifestyle Food and Sport to shut you up!

Recently free to air have again requested an exemption to increasing captioning through the Australian Human Rights Commission. Why? They are increasingly under threat from Pay TV. You would think they would want to increase their market share. What better way than by increasing captioning access? But no! They continue to see us as a cost burden! PFFFFFFTTTTTT

The Big Four Cinemas are the worst. They want to force on us a technology called Captiview. A technology that is so basic, so prehistoric it has been described as a bendy armed alien with 1980’s font.  Early trends have seen Captiview being widely condemned. There are some that say its tolerable whilst there are many who absolutely deplore the technology. Captiview is being forced upon us because it appears to be the cheapest technology going and not, as we were led to believe, the best technology going.

Australians with a hearing loss who access movies through Captions are being told that Open Captioning is out because it’s not compatible with new digital technology that is being introduced by the cinemas. Yet information has recently come to light that this appears to be a furphy. Further there are seemingly better technology options around like Rear Window Captioning and captioning goggles.

We are told that Open Captioning is off putting to hearing watchers. Recently I tested this by putting captions on the Student Lounge TV at the university where I work. Six months later no one has turned them off. In Sydney and overseas captions on TV are permanent fixtures in waiting areas at airports. Has anyone complained? Does anyone really know if open captions are not liked by the majority of hearing patrons?  Has market research been carried out? Or is it all just an assumption???

Scarily the negative feedback to Captiview being witnessed in Australia appears to be matched in the USA. I recently subscribed to an online captioning group CACC. There are some that find Captiview “OK” and will tolerate it for access but there are MANY that complain of the discomfort it causes, the lack of access if you have vision impairments, the strain it causes from constantly refocussing … All these very same comments have been expressed in the short time Captiview has been in Australia. These trends appear to be ignored.

Alarmingly our advocates are telling us to tone down our negative comments. To be more positive or “we might end up with nothing”  But we are a market, a substantial market not something the Cinemas are “helping”. Invested in properly we will generate profit. But give us a sub-standard product and we will vote with our feet by not attending. I have no problem with people trialling Captiview and providing feedback but the Cinemas are rushing head on to install Captiview everywhere. I say put a brake on it, trial other technology too, get proper market feedback and then invest in system that everyone is comfortable with.  Common sense? Well as one witty scribe said, “the problem with common sense is that it’s not particularly common.”

WE ARE A MARKET! We have a right to demand quality! We pay and we want access and comfort on par with our hearing peers.  We have to realise this and promote this message to the hilt! We cost nothing but, hell, we make money for Australia and lots of it!