The Rebuttal

Let’s hark back to 2009. I think it was 2009 when the Big 4 Cinemas put in their application to be exempt from Disability Discrimination Complaints for five years. My recall is a little foggy but they had done a deal with our peaks, Deaf Australia and Deafness Forum, to increase captioning so that the deaf movie goer could access open captioning for movies that amounted to less than .5% (note the decimal point) of all movies shown. On the basis of this deal the cinemas made their application for exemption to Disability Discrimination complaints for five years. Quite rightly deaf people were insulted by the offer and almost 500+ Australians who are deaf, hard of hearing, Blind, vision impaired and their associates put submissions into the Australian Human Rights Commission to reject the Big 4 Cinemas’ application. Debate on the issue was immense on Facebook.

From all of this the Action on Cinema Access Group (AOCA) was formed, with support from Arts Access Victoria. AOCA commenced a skilled and intelligent campaign against the Big 4’s application for exemption. They distributed thousands of post cards and held rallies outside cinemas all over Australia. The rallies, that strongly voiced the needs of not just the Deaf and hard of hearing but also the needs of Australians who are Blind and vision impaired, received enormous national media coverage.

I remember that there was a great deal of scepticism about whether or not the Australian Human Rights Commission (AHRC) would listen to the  500+ people that put in submissions imploring them to reject the Big 4’s application for exemption or whether the AHRC would be moved by the mass protests. Previous history had shown that such exemptions were more often than not granted. Surprisingly AHRC actually did listen to the consumer and threw out the cinemas’ exemption application.

More surprisingly, very soon after the announcement was made to deny the exemption, the cinemas – after nearly eight years of stalling – suddenly within weeks came up with a solution. It seems that prior to the announcement being made the then Federal Parliamentary Secretary for Disability, Bill Shorten, had been brokering a solution with the cinemas. One suspects that the AHRC were involved too, although this is purely speculation.

But anyway after years of not providing, or indeed showing any willingness to provide above the bare minimum in captioning, the cinemas suddenly came forward with a PLAN. Not only would their solution provide captioning but it would also provide audio description for the Blind and vision impaired. This meant that for the first time the Blind and vision impaired would have access to the cinema.

A special viewing was arranged at a cinema complex in Sydney to demonstrate the new closed captioning and audio description systems. At this meeting major deaf and blind representatives and peak bodies were present and tried the new systems. The systems were demonstrated for less than ten minutes in total using a bizarre demonstration film that did not equate to anything like the real cinema experience. Yet on the basis of this our advocates were expected to endorse the system.

Present at this initial demonstration were CEOs from the four major cinema operators (Hoyts, Greater Union, Village and Readings), and representatives from organisations representing Australians who are Deaf or hearing impaired, and who are Blind or vision impaired (Deaf Australia, Deafness Forum, Blind Citizens Australia, Vision Australia, Australian Federation of Disability Organisations, Arts Access Victoria and Action on Cinema Access), The Australian Human Rights Commission, the Minister for Department of Broadcasting, Communications and Digital Economy and Parliamentary Secretary for Disability (who was at the time Bill Shorten).  Key representatives from the Department of Family Housing Community Services and Indigenous Affairs (FaHCSIA) and Media Access Australia were also present.

Around this time the much-vaunted Accessible Cinema Roll-Out Plan began to be publicised. The plan aimed to have in excess of 200 cinema complexes providing accessible cinema by 2014. Quite naturally, although not having yet tried the new systems, Deaf, hard of hearing, Blind and vision impaired people, were celebrating. Access it seemed was just around the corner. All their efforts in protesting and writing submissions to the AHRC would bear fruit. Unfortunately the celebrations, at least for the Deaf and hard of hearing, were premature.

2010 records show that after this demonstration there was another meeting held in Melbourne with the same people and chaired by Bill Shorten. This meeting was called to discuss the formulation of what is now known as Accessible Cinema Advisory Group (ACAG) This group was set up to provide opportunities for the peaks and advocates to share their comments, views and expectations. Even at this early stage, records clearly show that there were more than a few concerns about the CaptiView system that the cinemas wanted to introduce to provide closed captions.

 Deaf Australia (DA), for example, stated in a formal response to Bill Shorten:

  “….We have a number of concerns about the technology and would prefer a final agreement that does not lock us into any particular technology but allows for changes, updates and improvements in technology.”

 Arts Access Australia’s response was along similar lines. They had this to say:

 “….We are concerned about the proposed use of CaptiView for the delivery of captioning and urge the cinema chains to consult further with a broader cross-section of the community before committing to this technology.”

 Arts Access Victoria echoed the sentiments of Arts Access Australia,

 “We are less confident of the use of this technology for the delivery of captioning to deaf and hard of hearing patrons. We would like to see the decision about the widespread roll-out of CaptiView predicated on the results of wide community consultation.”

Deafness Forum Australia was more concerned about viewers who would have to carry the technology into the cinema and set it up. They felt that this would discourage people because it would make them stand out, suggesting it would be an embarrassment. They also expressed concerns about the number of CaptiView devices available at each cinema and whether this would meet the demand of larger groups attending cinemas.

All of these concerns were ignored. All present were instructed by Bill Shorten at this meeting that they needed to work together and move forward ‘under good faith’.

As the roll-out proceeded, with much fanfare, it became obvious that there was a lot wrong with the system. Deaf people were implored to not be fussy and give it a go. They did but soon stories began to emerge that children found it hard to access, people who are deaf with vision impairments could not use CaptiView, some people were leaving the movies with stress related headaches from constant refocusing, tall people had to slouch to watch the movie and see captions on the device – the negative stories were seemingly endless. More concerning was the quality of the captioning was often inconsistent.

 What is worse is that the system often failed and even three years into the roll-out the system is still failing. In the last month for example the following stories have emerged.

• There is a ridiculous story of a man with no less than eleven free cinema tickets because the system crashed on him or did not start every time he used it.
• The President of Deafness Forum Australia informed people on the Action on Cinema Access Facebook page of having got his third free ticket because the system did not work.
• Leigh-Anne told of how the CaptiView system twice stopped working in the movie. They then got a replacement unit which was flat.
• Bizarrely one viewer was allegedly charged $3 to use CaptiView.

 The whole roll-out is degenerating into a farce. Positive stories exist but they are far outweighed by the negatives.

The failures of the system that we are witnessing are exactly why our advocates, in those early stages, advocated for caution and trials before committing to CaptiView. Yet despite the mounting formal evidence that many viewers dislike CaptivView and of increasing system failures all our advocates, with the exception of Action On Cinema Access, suddenly did an about face and endorsed CaptiView as the best technology going.

 Perhaps they took a view that it was better working with the Cinemas and Government and work with what was available. Even so the response of these peaks is puzzling given the overwhelmingly negative feedback.

This is despite the fact that there were clearly other options which might have been better such as Rear Window or Sony Caption Glasses. But we will never know because trials of alternate technology will not be considered.  Action On Cinema Access became the lone voice pushing for trials of other technology.

 Yet despite the negative feedback our peaks have endorsed CaptiView and the accessible cinema roll out. In the face of mounting negative feedback there is no logical answer as to why given their earlier responses that indicated their concerns about the CaptiView technology.  Of course Action On Cinema Access, which is completely voluntary and do not rely on Government funding, have continued to represent the voice of the consumer as strongly as they possibly can. Meanwhile the other peaks involved have inexplicitly endorsed the roll-out. Sadly, for their efforts to remain true to the consumer, Action on Cinema Access has been labelled divisive.

 I am aware that recently Action On Cinema Access (AOCA) sent several emails to the Government demanding answers to several questions. For example, consumers, along with everyone on ACAG for over three years, were led to believe that Open Captions were not possible with the new digital servers purchased by the cinemas. This proved to be inaccurate. AOCA demanded answers on such issues as to whether other technology could be trialled and whether the Cinemas had locked themselves into a legally binding agreement to purchase only CaptiView units meaning that they could not consider the introduction of alternate technology.

 The Governments answer was blunt. CaptiView was a ‘.not a trial’. It was a locked in ‘..roll-out..’ and that the only complaints we could make would be if the cinemas failed to roll it out as agreed in the Accessible Cinema Roll Out Plan. In short we have to lump it. Looking back on the records of that first initial meeting, it was clear no one indicated any endorsement of the approach we are now seeing today. The logical and sensible approach that was first advocated has been ignored.

 The Big 4 Cinemas and the representatives of ACAG, with Action on Cinema Access the exception, are showing no respect or regard to the vast number (and growing) objections to CaptiView or of the sensible alternate suggestions being put forward by Australians who are Deaf and hard of hearing. Such suggestions have included trials of alternate technology and the retention of open captions in some form.

 It is interesting to note that research by AOCA has indicated that open captions, or indeed any captioning, actually cost the cinemas nothing. Captions in various formats are apparently made available as part of movie rentals at no extra cost. The only additional cost is the purchase of devices such as CaptiView. It would actually be cheaper to retain open captions but the cinemas have a misguided view, which is not backed by any research, that open captions will put off hearing viewers from attending the cinema.

 Hundreds and thousands of tax payer dollars are being handed out to the very profitable cinemas to assist them with the roll-out of CaptiView even though there are clear alternatives. The cinemas will not seriously make any effort to trial alternative technology. Hollow promises to “consider” alternate technology are amounting to nothing. This was one of the promises made by the cinemas to those present in the early stages of ACAG that was probably the deal breaker. Indeed the original ACAG terms of references actually mandated that other technology be seriously considered. This promise has clearly been broken. 

 AOCA are currently considering whether they should remain within ACAG or whether they are best served by lobbying outside the confines of ACAG. Before making the decision they have attempted to obtain feedback from stakeholders through its Facebook discussion page as to whether this is the best approach to take. Some have urged AOCA to withdraw from ACAG and some have urged AOCA to stay within ACAG to maintain a dialogue with the cinemas and the relevant representatives. The debate is still raging with 83 comments being recorded by midday on the 12^th June. AOCA, with their limited resources, entirely voluntary and with no budget,  are at least trying to consult. It should be a lesson to others who are involved.

 It’s time that people who are Deaf and hard of hearing looked at alternate ways to be heard. Use the Opposition Shadow Minister of Disability, explore a class action or complain through the Australian Human Rights Commission. If you do complain through the AHRC be aware the Disability Commissioner has publicly backed the Accessible Cinema Roll-Out and thus aligned the AHRC with it. Any complaints through AHRC are likely to lead to nowhere. Do whatever it takes. This farce and continuous comedy of errors must end now.

# The author of this piece accepts full responsibility for the information within. Some may claim that the information is confidential. This is nonsense. The Accessible Cinema Roll Out Plan is being subsidised with tax payer money and many of the representatives within ACAG are funded with the tax payers dollar. Consequently the information within is seen as a matter of public interest.

 As always if any of the information is considered inaccurate or the reader disagrees with it they are free to respond. All responses will be published. The Rebuttal does not censor.

Our most recent article that was written by Julie Phillips, disability advocate, challenges us all to think about why Australia is lagging behind the world in disability support. ( http://the-rebuttal.com/?p=1886 ) This is particularly so when it comes to the deaf. Julie suggested that some of our priorities might be out of kilter. What she suggests is that access to interpreting at hospitals and deaf education should be areas that we advocate for as a matter of priority and not so much issues such as cinema captioning. Julie had this to say,  “While it’s been great to see a lot of work get put into the cinema issue, I would have thought that the rights of deaf children to an education would be higher on the agenda. The lack of an interpreter in a hospital situation could mean death – a bit more important than open captioning.”

Julie also, deliberately provocatively, suggested that the government really doesn’t care much about deaf people, “If I was in government, or any other service provision, and had to make a choice between cutting something for hearing people and cutting something for deaf people, I would cut services to the deaf. Why? Because I can.” But more importantly she suggests that this is because the deaf and their advocates have their priorities wrong and do NOT demand enough. “There is a reason that in other countries the rights of deaf people are far ahead of those in Australia. Because they demand them.”, said Julie.

For the most part I agree with Julie. Deaf advocacy in Australia is poor. It tends to try and align itself with Governments. It fears upsetting the apple cart. Rather than advocate it diplomaticates. (a made up word) But sometimes what we require is good old fashioned RA RA RA Advocacy. We need to show passion and the need for change. Too often we take the diplomatic path that leads to nowhere but the lands of double speak. Sometimes saying it bluntly and a dose of good old fashioned passion are what is needed.

BUT as much as I agree with Julie’s sentiments I disagree that cinema captioning, or any captioning, is less a priority than say hospital interpreting, deaf education or even saving the Auslan course at Kangan TAFE. Why? Because it provides access for the deaf to Popular Culture and Popular Culture is more powerful than we think.

Nixon, 2006, in an article printed on Yahoo Voices defines Popular Culture, or Pop Culture as, “a contemporary life style that is generally accepted by a large population of people.”  Nixon provides examples of Pop Culture as, “…broad based literature, movies, and music genres …” By this she means block buster movies and books like Harry Potter, TV series like Revenge, the music of Lady Ga Ga and, dare I say it, the very sad and pathetic Twilight series of books and movies :-D. You can add to the list radio, sport and in fact anything that is known to stir the masses. Even Opera can become Pop Culture if the masses decide that it is in.

What Pop Culture does is bring people together. Many people turn their nose up at Pop Culture. They claim it is a bad influence, that it is disrespectful and tramples all over our traditional values. It is blamed for everything ranging from violence among youth to graffiti. Just about everything that is wrong with the world can be attributed to Pop Culture. Nixon notes in her Yahoo article, “….children are exposed to a tremendous amount of information fed to them by the pop culture world. This influences and shapes the identities of our children.” Tellingly Nixon explains, “The good thing, however, is not all of it is negative and if parents are educated and aware of what their children are doing pop culture can be used positively to help mold the children of the future.”

Undeniably we can not get away from Pop Culture. In fact Pop Culture is the centre of most of what we all talk about. Dr Ron Taffel is a family therapist. He has been described as, “a genius addressing all the issues of family life” Dr Taffel has written about Pop Culture and its influence on children. He acknowledges that it can have a negative influence and can cause friction in families. But he also has explained that Pop Culture provides kids with access to what he calls the Second Family. This is the family of their peers and it is this family that Dr Taffel describes as, “A social structure for teens that provides a type of intimacy, support, communication and honesty he or she can’t find anywhere else.

In an article published at The Rebuttal, just before Julies article, the wonderful Korrina Goodwin eloquently tells of a situation where she is watching a TV documentary with her deaf daughter. (http://the-rebuttal.com/?p=1870). Korrina is hearing and as she watches the documentary a range of emotions hit her. She laughs she cries and she is inspired. As she watches she notes that her deaf daughter is in intense concentration, showing no emotion.

There are no captions on this TV show. Why is not clear. Most likely they were watching Austar or Foxtel which both provide the most appalling access to captioned shows, particularly documentaries. At the end of the show she decides to question her daughter about what happened in the documentary. She asks her daughter what she thought of the funny bits, the sad bits and the serious bits. To all of these questions her daughter had no answers.

Now imagine if her daughter had been watching a movie at the cinema. Perhaps Breaking Dawn from the Twilight Saga, it seems to be the in thing for girls. Perhaps she had gone to the cinema with a group of girls from school. The movie is not captioned, some guys may argue that this is a good thing 😀  The movie ends and the girls, like a gaggle of geese, all make their way to the exit chatting excitedly about what they had just viewed.

They would be chatting about the music, “Wasnt it cooooool”, or Edward – “Isn’t he haaawwwwwwtttt.” Or perhaps they will be talking about when Edward and Whatsehername are gonna, “Doooooo ittttt” Or why Jacob’s personality and physique is more desirable and that Edward is a wimp. Who knows what they would be talking about but it would touch on many, many issues. These issues will be to do with sex, relationships and life. Most likely the girls will relate the movie to some of their own real life experience. Through this discussion they LEARN many things. More than a classroom can ever teach them.

Meanwhile Korrina’s daughter has not been able to access the movie in all its glory because of the absence of captions. How is she going to get involved in the discussions? How is she going to access the Second Family that is her peers? Communication with them is hard enough being deaf but it is even harder, as any lip-reader will tell you, if you have no idea as to what your peers are talking about. In short not only does the lack of captioning prevent Korinna’s daughter accessing information it isolates her from her peers. What access does Korinna’s daughter have to LIFE EDUCATION through her peers? Little wonder then, as Korrina notes, her daughter prefers to stay at home.

At school the smart teacher will have learnt that Pop Culture is a way to engage the student. They will compare Macbeth themes with Pop Culture movies. Perhaps Revenge had been on TV the night before.(I don’t watch it so I am only guessing here.) Perhaps some character in the story line has killed someone and has blood on their hands. A famous scene from Macbeth has Lady Macbeth washing imaginary blood from her hands as a way of demonstrating her remorse and guilt. Perhaps the character in Revenge is doing the same sort of thing, washing blood from their hands over and over. The smart teacher will relate Macbeth to this Pop Culture as a means of  engaging the students. Thankfully Revenge is captioned, but what if it wasn’t? What access would the deaf student have to this type of learning? At the end of the lesson the students all leave the classroom excitedly chatting of the comparison, exchanging views and expanding on the themes. Where does the deaf student fit in? What peer learning can they access?

PeersUnited.com suggests that, “Everyone needs to belong — to feel connected with others and be with others who share attitudes, interests, and circumstances that resemble their own. People choose friends who accept and like them and see them in a favourable light.” I would argue that much of this acceptance comes from being able to access Pop Culture. Pop Culture is the centre of much of what stimulates discussion and interaction among peers. Without access to Pop Culture your access to peers and their conversations is limited. Deafness is isolating enough, we don’t need to add another layer to it by limiting access to Pop Culture too.

PeersUnited.com also notes that, “Teens who feel isolated or rejected by their peers — or in their family — are more likely to engage in risky behaviours in order to fit in with a group.”  It is here we have the seeds to destructive behaviours and ongoing mental health issues related to isolation and poor self esteem. Access to Pop Culture for the deaf is a huge part of the jigsaw. Captioning at all levels is essential.  It is all interwoven – captioning, interpreting, education and peer access – nothing is more important than the other.

Why pick on the Deaf?

If anyone is surprised about the cuts to the Kangan Batman Auslan Course, I would have to ask – why?

If I was in government, or any other service provision, and had to make a choice between cutting something for hearing people and cutting something for deaf people, I would cut services to the deaf. Why? Because I can.

Its 2012.

Do deaf children have the right to Auslan as the language of instruction in schools? No.

Do deaf children have the right to a qualified interpreter, or an interpreter in every class they have? No. (But at least we have the new Deaf Education Institute which has given some nice jobs to hearing people)

If a deaf person is living in a government funded Community Residential Unit or Supported Accommodation Service do they have the right to signing staff? No.

If there is a deaf staff member in an accommodation facility, do they have the right to interpreters for training? No.

Do deaf people have the right to decide whether they need an interpreter in a hospital situation or not? No.

This has been going on for years, but what has anyone done about it apart from complaining amongst themselves? Not much.

So why wouldn’t hearing people choose to slug deaf people one more time? 

There is a reason that in other countries the rights of deaf people are far ahead of those in Australia. Because they demand them.

The most excited I have seen deaf people get in the last few years is when the cinemas were trying to get an exemption from the Disability Discrimination Act. The years of hopeless access to the cinema before that, didn’t seem to bother anyone that much. While it’s been great to see a lot of work get put into the cinema issue, I would have thought that the rights of deaf children to an education would be higher on the agenda. The lack of an interpreter in a hospital situation could mean death – a bit more important than open captioning.

Government and hearing people in general have got away, and are getting away, with so much oppression of deaf people, why wouldn’t they feel they can keep on going?

I suggest we all have a good think about why it is that some things have not changed for 20 years for the deaf community, and what we should be doing about it. If government knew that every time deaf people’s rights were trampled on there would be a huge reaction – not just once, but ongoing until things changed, they would not feel so comfortable about continuing to oppress them.  There needs to be some organised responses to all these things.  What do you think?

Julie Phillips

Disability Advocate

 

 

 

As I sit on the lounge I laugh my head off at what we are watching. I look across at my daughter who is sitting looking rather blank, but deep in concentration.
Next I find myself in tears “oh how sad”, I look across again to find my daughter still looking rather blank, but still concentrating very hard.

I smile, laugh, cry, am astounded, my feelings getting a real workout on all levels, but my daughter is still sitting very perplexed.

At the end I look into my daughters eyes and exclaim “Wow that was so moving, so many emotions in one story.” She sits quietly. I add a leading question, “What did you think about that story?”, her reply “ok”. Surely she got more from it than that. I ask again “What did you think about the funny part”, her reply “What funny part?” –  What did you think about the sad part?”  Her reply. “Huh?”

“Ok, so tell me about the story, what did you see?” Now I’m sitting very blank, but deep in concentration, I don’t understand, but what she says makes sense. Her story brings me to tears, because what she saw, was not what the story (or characters) spoke. She has watched it in silence and pieced together what she thought was the story, her story so different but so brilliant.

I now proceed to tell her what the story spoke to me, now she laughs, n cries and says “Wow, really! I can now see that”, but in her world of near silence she has watched the documentary like a jigsaw puzzle, piecing it together with only part of the pieces, but changing it to fit what she sees not hears.

A saddened feeling emerges, because what if this was an emergency and she got the mixed message. What if it was a story about her and it she got it wrong, one of my hopes is that it doesn’t send her into depression or isolation (as so many deaf people feel). What if it was her job, or classroom, a misinterpreted direction? What does she hear from the radio, tv, movies, teachers, coaches, friends, family and friends? How can she talk to her friends without them laughing when she got the story wrong? Maybe that’s why she prefers to stay home.

What can we do? I see a deaf world trying to fit into a hearing world. Some of the most amazing, inspirational people are deaf. What is the definition of disability really? Why can’t deaf people compete at Paralympics? Why can’t captioning and interpreters be a priority?
Isn’t being deaf a bit like an amputee (no disrespect intended). But people without hearing have had something in their auditory processing amputated whether they were born without it or lost it along the way. Is a loss of communication and language a disability? Sigh… Why are the simple things in life for some not easily accessible for other or a priority. Sigh…

 Korrina’s daughter is deaf. She posted her thoughts on Facebook and has given The Rebuttal permission to reproduce them here.  As a deaf person I can relate to her thoughts. Before captioning became readily available on television I recall watching TV shows with my parents. My poor mother got a work out. When ever anyone laughed I would demand to know what was happening. I would get so frustrated when she would tell me, “Tell you later.” Nowadays most shows on free to air TV are captioned but on Pay TV this is not the case, particularly documentaries. Like Korrina’s daughter all we can do is watch, concentrate hard and hope that we get the gist of it all.

And this is what it is like for a deaf person watching TV or a film with out captioning. Sure we all have varying levels of hearing loss but we still miss a lot. The funny parts, the sad parts, the mystery and the key messages of the story we deaf people  piece together largely from visual cues.

This passage from Korrina where she questions her daughter to ascertain how much of the TV show she has understood is harrowing for me. It takes me back to when I started social work studies. At the time I had no note-takers or interpreters. In group work people would discuss the topic of the lectures. Different students were responsible for leading the groups. To score points with our tutor they would try to draw me into the conversation. This was known as gate opening. I would break into a cold sweat because 9 times out of 10 I wouldn’t have a clue what people were discussing. It felt like the Spanish Inquisition!

Korrina expresses her fears for her daughter as a mother. She notes that what should be a simple answer, providing access, is not provided. Why can’t her daughter have the same access as everyone else? The solutions are already there. Why must our society constantly create barriers rather than break them down. I am reminded of Labor heavyweight  Bill Shorten who said, “A rich country like Australia has no excuse to not provide for people with a disability.”

Yet here we are with Australia ranked bottom of the pile for comparable countries in the Organisation of Economic Cooperation and Development (OECD) for disability support. Here we are with rich and profitable cinemas providing us with substandard and unreliable captioning. Here we are with one of the most profitable Pay Television franchises in the world who will not provide full captioning access even though nearly all the programs they show have captioning provided overseas.

And Korrina is right to worry, “… one of my hopes is that it doesn’t send her into depression or isolation (as so many deaf people feel)” And this is what poor access or the lack of it does. It isolates, it frustrates and it prevents the acquisition of knowledge all of which can ultimately lead to depression. It is not for nothing that statistics show that depression is higher among people who are deaf than the general populace.  And the solutions are so simple …. We have to do better than this.

 

There are very few things in life that are more satisfying than having a win in the fight for human rights. I remember as a student, in the very early stages of my career as an advocate for people with a disability, the immense satisfaction that I felt when the University of South Australia accepted its responsibility to pay for and book interpreters for lectures and tutorials. It had been a six year fight involving many people. That first day in psychology when finally I could follow a lecture in the full fills me with a nostalgia. This is something that only an advocate can understand.

But the dictum that an advocate must follow is this – IT IS NEVER ENOUGH. In the Eighties we got access to captioning on TV. AT first it was mostly on the ABC. It began to filter to other shows – Neighbours, Home and Away and Sixty Minutes. I still remember the rage when Sixty Minutes ceased captioning altogether because the deaf complained that some stories were not captioned and that they wanted full access. Channel Nine decided it was all too hard and stopped the captioning of Sixty Minutes altogether.

But from these early days of captioning access to captioning has continued to improve. But this has only been because WE HAVE DEMANDED IT.  If we just accepted what was on offer, like grateful puppies, no improvements would have been made. What we strive for is full and QUALITY access. IT IS NEVER ENOUGH! When we get full access to television captioning it still will not be enough. We must then monitor it and demand QUALITY. No drop outs and no crappy live captioning. The aim is FULL and QUALITY access. We must remain diligent.

Our rights are won through skilled and diligent advocacy. They are also protected by laws and by institutions like the Australian Human Rights Commission, the Commonwealth Ombudsman, the Telecommunications Industry Ombudsman and so on. These are impartial bodies that we seek assistance from when our advocacy is not hitting the mark. In short when all else fails we call in the HEAVYWEIGHTS.

Chief among these for people with a disability is the Australian Human Rights Commission. If we feel that we are being discriminated against by private or public institutions we can call on the Australian Human Rights Commission. What we must do is complain. The complaint might be about captioning or it might be about lack of access at train stations. Graeme Innes, the Disability Commissioner at the Australian Human Rights Commission and himself blind, actually made a complaint through the AHRC against RailCorp. He complained about the lack of public announcements for scheduled time and platform changes which are important for the blind who cannot access text based information.

For the HEAVYWEIGHTS to be effective they must be impartial. They must not be seen to be favouring one issue or another. The paradox is that the Australian Human Rights Commission does not just protect the rights of the vulnerable but of everyone. For example if I make a complaint that the local sporting club wont provide me with interpreters for soccer training and the provision of such interpreting would send the sporting club out of business, the Australian Human Rights Commission also protects the sporting club from unrealistic demands. It is not just about the person with a disability.

For these reason organisations like the Australian Human Rights Commission need to be neutral at all times. They cannot be seen favouring any issue or any outcome. They have to treat each case on its merit and to the letter of the law. This means, as much as they would like to, they cannot be seen to endorse or support individuals, organisations or even Government policy.

Unfortunately this is not happening. The Australian Human Rights Commission, in particular the Disability Commissioner, Graeme Innes has lost its way. We will not be popular for writing this because Mr Innes is much loved and respected advocate for people with a disability. He has been involved in the sector for many decades and achieved immense outcomes for people with a disability. Unfortunately of late, in our view, he has made some gross errors of judgement. In writing this piece, which is critical of Mr Innes, we wish to put on record our deep respect for him both as an advocate and a person.

You see Mr Innes has become a champion. He is a champion of everything. He champions the much vaunted National Broadband Network (NBN) There is no question that the NBN has the potential to be a great thing, but what if it isn’t? What if it does not provide accessible information or support for people with a disability? What if it discriminates in employing people with a disability? Perhaps the above scenarios are unlikely but they are possible. But Graeme Innes is an NBN champion. He is our key representative on the Australian Human Rights Commission. Can we feel confident he is neutral if we should make a complaint about the NBN or the organisation that administers it if he is known as an NBN Champion?

We have no doubt that Mr Innes will be neutral BUT it is the perception of support and alliance with the NBN by Mr Innes, and by association the Australian Human Rights Commission, that might give cause for us to worry that any complaints might not be heard fairly. It is this perception that is damaging for both Mr Innes and the Australian Human Rights Commission.

But it is not just the NBN that Mr Innes champions. He champions the National Disability Insurance Scheme (NDIS) too. Don’t get us wrong we are staunch supporters of the NDIS too. But even in these early stages of the NDIS there are concerns that the NDIS will not provide for ALL people with a disability. For example there are apparently no representatives from the peak bodies of either deaf or blind representative organisations. If the deaf or the blind feel at any stage that the NDIS is not meeting their needs or discriminating against them how can they feel confident that their complaints will be heard fairly. After all Mr Innes is an integral component of the Expert Committees charged with the roll-out of the NDIS and has publicly stated that the NDIS is the, “Outstanding announcement of the year …” We agree, wholeheartedly! BUT for all the reasons we have already explained it is imperative that Mr Innes remain neutral. He may privately feel it is terrific but it is imperative that he and the AHRC refrain from public endorsement of programs such as the NBN or the NDIS so that any complaints that may occur are not compromised.

Where Mr Innes really has compromised himself and the AHRC is in his very public praise of the Accessible Cinema Roll-Out. Of course we are referring here to the roll-out of the CaptiView closed captioning device by the major cinemas in Australia.  The device is extremely controversial. There are deaf people that like and tolerate CaptiView and there are very many who cannot use CaptiView for various reasons such as vision impairments, their height, their being children or simply having physical disabilities. Many have complained that CaptiView gives them headaches and that they find it extremely difficult to use because of constant refocussing from device to the screen.

The complaints have been many. There has even been a suggestion of a class action against the cinemas because of its lack of response to complaints about the CaptiView device. Apart from the fact that many deaf people feel that CaptiView severely compromises their access to the cinema it often is not working, sessions are wrongly advertised and staff lack awareness of its use. In short there is a strong push for the roll-out of CaptiView to be ceased, other technology trialled and retention of open captions in some form. Mr Innes is very aware of these views.

But the cinemas, and indeed the Government that is supporting the cinemas, are having none of it. They have recently made it clear by email that the Captiview roll-out is not a trial, that they support CaptiView and the only complaints we can make about CaptiView are in relation to whether the Cinemas do not roll it out to the timeframes that they have agreed. In short we are stuck with it.

Now many many deaf people are angry about this. They want to make a human rights complaint. But can they feel confident in approaching the Australian Human Rights Commission when the AHRC Disability Commissioner has publicly said, “… Cinema chains, and movie distributors, are to be congratulated. Now I can follow the films about vampires and magic I sit through with my 14-year-old daughter. (Well actually, she sits with her friends, and I am sent to sit somewhere else.)  This is just one of many public endorsements of the Accessible Cinema Roll-Out that he has made. http://www.abc.net.au/rampup/articles/2011/12/05/3383197.htm

Now the good thing about the Accessible Cinema Roll-Out is that it is providing audio description for the blind. From all feedback we have seen this is proving a godsend for the blind in terms of accessible cinema. But unfortunately for the deaf, CaptiView is not providing the same level of enjoyment or access. It should be remembered that what ever happens with CaptiView it will have no bearing on the provision of audio description for the blind. Can the deaf feel confident that we can make a complaint to AHRC about CaptiView and be heard neutrally when Mr Innes so publicly supports the Accessible Cinema Roll-out?

On the Blog, WiseGeek. There is a discussion about conflicts of interest. WiseGeek notes that, “..People in positions of power are more likely to face charges of conflicts of interest.” Particularly so because, “… many of the decisions they make must not be tainted by the possibility of  favouritism or personal gain.” We have no doubt that Mr Innes intentions in supporting the various causes that he does are not for personal gain. He does, however, show favouritism for many issues. This is his right as an individual BUT as the Disability Commissioner and a representative of the Australian Human Rights Commission he must at all times remain detached and neutral on policies and issues that effect people with a disability. Clearly this is not the case at the moment. Mr Innes has his fingers in too many pies and the integrity of the AHRC is being compromised as a result. As advocates that often rely on impartial bodies such as the AHRC to push our case, this is something we cannot afford.

With respect.

Kangan Auslan courses are to be closed. For many years now Kangan has been a production line for Auslan interpreters. Many enrol at Kangan and upon graduating go on to study the RMIT interpreting course. Some of these have even gone on to study at higher level interpreting courses at  Macquarie University. The Kangan courses have been a very important feeder course for would be Auslan interpreters for many years now. And suddenly they were  gone!

Why the courses have ended comes down to money and the lack of it. Recently the Victorian State Government made savage cuts to TAFE funding in the State budget. My previous employer the University of Ballarat, which is both a higher education and TAFE provider, stood to lose $20 million as the result of the cuts unless they made drastic decisions. Within days of the TAFE cuts being announced the University of Ballarat had announced wholesale cuts to courses, reductions in dollar support for students and redundancies in the TAFE.  The TAFE funding cuts were not an inconsequential thing.

TAFEs all over Victoria were in the same boat as the University of Ballarat. Many courses have been cut and jobs have been lost. In such an environment it is not surprising that Kangan had to act quickly. They did and Auslan courses were among the first to go.

Unsurprisingly this caused uproar. Within hours of the announcement of the dumping of Auslan by Kangan a 20 year old student had set up a support group on Facebook which within a few short days accumulated 4000 members. The Deaf community were in overdrive, Deaf Victoria put out media releases calling for calm while they investigated the matter. They showed great leadership in coordinating responses from the various stakeholders involved. Facebook was alive with chatter. To put it mildly, there was an outpouring of outrage.

That same night The Greens Member of Parliament put a question to the Victorian State Parliament. The Kangan Auslan courses, said The Greens, were a Human Rights issue and suggested that dumping of the courses by Kangan was a breach of the of basic Human Rights by the Government.

Of course the Government were having none of this. They made it out that they were prepared for what might happen. They said that they had been negotiating to bring in trainers employed by NSW Deaf to provide Auslan courses that would fill the void. They were to offer subsidies to NSW Deaf. Apparently to ensure the swift set up of such courses. Clearly the Government had hastily set up their answers to the Greens question because NSW Deaf, technically, does not exist. They were referring to the Deaf Society of NSW..

This announcement took everyone by surprise. The grapevine went into overdrive. What on earth was The Deaf Society of NSW doing on Victorian territory? Why had Vicdeaf not been approached?  Why were they bringing in NSW Auslan trainers? Hell, the NSW Auslan dialect is different from Victoria. How would this work?. A representative from Kangan went on to the Facebook support page and made it clear that he knew nothing of this approach to “NSW Deaf” Confusion reigned.

The next day the Deaf Society of NSW issued a press release. They claimed that they knew nothing of the approach from the Government. They had not been contacted and they had not been offered any subsidies. What is more, the Deaf Society of NSW fully supported the retention of the Kangan Auslan courses. There could only be one conclusion, THE GOVERNMENT HAD LIED!!!

Of course the Government were incensed and put out a press release outlining what they believed to be the truth. The Government suggested that Kangan had advised them that as far back as 2010 that they intended to offload the AUSLAN course anyway. They described how, through the Government Department of Skills Vic, they had been working with both the Deaf Society of NSW and Vicdeaf to establish accredited Auslan courses.

WHAT THE? The Deaf Society of NSW had lied???? They are in partnership with Vicdeaf???? Were they trying to steal Kangan funding??? Everyone was totally confused and then Vicdeaf put out their press release. Vicdeaf acknowledged that they had been working with the Deaf Society of NSW and Skills Vic to establish part-time accredited Auslan courses. The  Deaf Society of NSW was involved because they are a Registered Training Organisation that is accredited to provide such courses. Vicdeaf implied that they were only targeting part-time students and not the full time students of Kangan. They went on record to state that they fully supported the retention of the Kangan full-time Auslan courses. A Kangan Auslan Department representative went on record supporting both the Vicdeaf and the Deaf Society of NSW in their efforts to establish part-time accredited courses for students that did not fit the Kangan criteria.

Whether or not Kangan knew of the negotiations happening between Skills Vic and the two Deaf societies is unclear. One would have thought, and hoped, that as a matter of courtesy both the Deaf Societies would have kept Kangan Auslan Department fully informed of their negotiations. Or perhaps they hid behind that old furphy of “commercial and in confidence” fearing that if they disclosed their intentions others would try and steal their thunder. We will never know.

Unwittingly Vicdeaf  and the  Deaf Society of NSW became pawns in the Governments strategy to save face. Make no mistake the Minister concerned, Mr Hall, would have had no idea of the negotiations between Skills Vic and the two Deaf Societies. When the Minister became aware of the potential uproar and the question that was to be asked by The Greens in Parliament his staffers went into overdrive.  These staffers would have delved deeply into the department to find an answer to The Greens question. They were clearly on the hop, hence they even got the name of the Deaf Society of NSW wrong. To be fair it is still not clear why the Deaf Society of NSW, in their first press release, did not mention the negotiations with Vicdeaf and Skills Victoria that had been taking place for sometime. They made it sound like they had  no involvement whatsoever. This clearly was not the case.

Quite frankly it was a shambles. The only people to come out of this with their heads held high are the students of Kangan,  Deaf Victoria and the Kangan Auslan Department. The Kangan Auslan Department must have been under immense stress, to their credit they have retained a calm, humble and dignified approach.

Both the Kangan students and Deaf Victoria have shown what can happen when passion is put to good use. The students have been awesome. In just over a week they have organised a Facebook support page that reached 4000 members. They have organised a website, a logo, T-shirts and protested calmly and intelligently. Deaf Victoria must also come in for high praise. Their professionalism has been fabulous. They have coordinated responses, called meetings and lent support to get rallies organised. The Kangan students and Deaf Victoria are a credit to all of Victoria.

Quite rightly both the Kangan students and Deaf Victoria have ignored the dramas of the Government and the two Deaf societies. They have, with staunch determination, kept focus. The politics is irrelevant; the focus has been on saving the Kangan Auslan courses. They should be proud and hopefully the powers that be will learn from their determination, honesty and calm dignity.

Take a bow.

*Footnote – Auslan courses in the Gippsland were also facing the scrapheap. Apologies that the Gippsland were not also mentioned in this article.

Recently I attended the excellent Deafness Forum Summit in Melbourne. I was particularly interested in the second day where Dr Anthony Hogan and Dr Paul Jacobs spoke about psychosocial issues related to deafness. There were some fascinating facts and ideas put forward. Dr Hogan, for example, spoke about the stressors of deafness. The isolation and the constant struggle to interact causes people who are deaf to become ill more often. In fact, if my memory serves me right, Dr Hogan suggested that the life span of the average person who is deaf is six years less than the general populace. He attributes this to the increased “stress” associated with deafness. Dr Jacobs spoke of “deafness specific” life skills and theories such as the 10 000 hour rule. Put simply Dr Jacobs research found that ‘healthy personality’ in  people who are deaf is influenced by the development of certain “deaf specific” skills. These might be using captions in a variety of situations or developing a level of assertiveness to deal with a variety of “deaf specific” circumstances. Mastery of these skills may never be fully achieved but development of “deaf specific” skills is important. The ideas of both Dr Hogan and Dr Jacobs are far more academic than I can explain in this article but to me it was fascinating stuff. I did, after all, develop the Successful Adults in Life Program for Young Deaf People back in 1999 which had a focus on, “Deaf Specific“,  life skills.  The disability politics in South Australia killed that one stone dead, but that’s another story.

But the quote that stood out for me among all others came from Dr Hogan. He was asked what he thought of the National Disability Insurance Scheme. He was, to put it mildly, extremely sceptical it would have any impact for people who are deaf at all. His rationale was that we are obsessed with equipment and technology and that these things are only a very small part of the equation for providing proper support and access for people who are deaf. Dr Hogan was alluding that we need to have a greater focus on the psychosocial needs as well because in doing so we provide the person who is deaf with a framework to be able to live within and interact with general society. He is right.

I lost my hearing around the age of 8. Firstly I was in the moderate to severe range later to become profound. The doctors and audiologists all suggested hearing aids. I remember endless trips to the Royal Adelaide Children’s Hospital and to the National Acoustics Laboratory for hearing tests. At first my parents were in denial and refused to consider a hearing aid even to the point of getting a second opinion. In the end it was obvious, a hearing aid was needed.

I was fitted with an aid and placated by my parents and the audiologists alike. “The aid is very small” they said, “No one will see it.” They reassured me that it was, “…the same colour of your skin”, that, “You can grow your hair long and no one will see it.” The aim of all this was to put me at ease and to reinforce to me that a hearing aid would not make me different. The reality is that the opposite was true. The very fact that I needed to camouflage my hearing aid reinforced that being deaf needed to be hidden. It was almost as if it was shameful.

But the overall message back then was that the aid was going to FIX me. And that by hearing better my problems would be largely solved. There was no support for me to deal with my anxiety at losing my hearing. There was no advice to me as to what hearing with an aid would be like and how my peers would respond. There was no training in the use of the aid and asserting myself when I did not hear properly. It was just a fitting and away you go.

No one advised my parents as to how to facilitate communication within the family. No one advised them of the frustrations I might encounter. No one provided support to my parents, who must have been going through extreme anxiety at the time.

No one told me that I might develop a certain amount of paranoia. Paranoia that develops simply because you don’t know and can’t hear what is going on around you. “Are they talking about me?”, “Are they Laughing at me?”, “Why are they staring at me?”. It got to a point that on the bus home from school I would go immediately to the back of the bus so that I could see everyone and make sure I was not the centre of the attention.

No one advised that upon losing your hearing you go from popular to also-ran. I was always good at sport and when teams were picked I was one of the first selected. Suddenly no one wanted me. I was picked last. No one advised me how to deal with the inevitable crash to my self-esteem that this would cause.

No one advised me that when I entered adolescence that the focus on body image would make me extremely self-conscious. I didn’t want to wear my hearing aids because it was uncool. Pressure on me from school and parents to wear my aids was intense. I would deliberately lose my hearing aids. “Accidently” drop them down the toilet and even fed them to the dogs.

It got to the stage that I would wag school. I missed 14 days in a row. I would catch the bus to the local shopping centre and sit in the centre toilets reading the newspaper from end to end. Eventually the school rang my parents to find out what was going on, I was sprung! There was no exploration of the reasons for my wagging school or my extreme response to try and avoid wearing hearing aids. I was sent to the deputy principals office and caned.

No one advised me of the change my deafness would bring to my voice. Unable to monitor or hear my voice I would shout. My voice became “deaf”. Of all of this I was unaware. I didn’t understand the snickering of my mainstream school when I addressed the assembly to tell them my soccer team had won six nil and that I had scored five goals. I was mortified.

No one explained to me that I would be self-conscious and unable to approach girls and ask them on dates the same as other guys. I would worry what they would think of me. I would worry of the rejection. Of course my deafness was to blame for all this, “No girl would want a deaf boy”. I withdrew and never went out. When my mates were starting to night-club I was in my safe haven in front of the TV.

No one advised me of the communication strategies that a deaf person might need for communication at work. No one advised me of prejudice that employers might exhibit when I applied for work. No one advised me of the difficulties of accessing university at a time when interpreters and note-takers were not available. No one told me that I would have to get out in front of my university peers and ask for a note taking buddy because the disability liaison officer of the time did not organise it for me as he had promised.

It is a wonder I came out of all of this in one piece. All I got was a hearing aid and I was sent on my way No support. No training in its use. No advice of its limitations. No advice of the personal and psychological challenges that I would have to confront.  I received a technology fix and a shove out into the big bad world.

These are some of the stressors that Dr Hogan is talking about. Some of us get through it and become strong and functioning human beings. Others do not and this is why incidence of poor self-esteem and the mental health issues are high amongst people who are deaf. Deafness is not just about hearing, it’s about overcoming and skilling the person who is deaf to deal with the various issues that will arise. It is about supporting families, developing communication strategies and about developing a level of resilience. Most of all it is about navigating the minefield that is deafness which goes far beyond improving hearing.

The NDIS is a wonderful thing but if it supports the deaf and only focuses on the technology fixes it will miss the mark by a long way. We cannot just say provide hearing aids, provide cochlear implants, provide captions or provide interpreters and that will fix it because it will not. Deafness is a social disability, no matter what age it is acquired.  If we do not build the psychosocial needs of the deaf into the NDIS then its benefits to the deaf will be limited. This is why we need a deaf expert on the working groups that have been charged with setting up the NDIS. Currently there is not one and it is much needed. Because deafness, it’s complicated, to put it mildly.

**** There is no doubt that there are similar psychosocial issues for other disability groups. What Dr Hogan says about the obsession with, ”fixing”, through technology may have implications for these other groups too.  Here is hoping that psychosocial needs get serious consideration in the setup of the NDIS

The NDIS got up this week to much fanfare. Rallies were held around Australia. I attended the Rally at Federation Square in Melbourne. The Square was a sea of red as people with a disability from all walks of life cheered on every announcement about the NDIS and let Australia know it is what they want and need. In Sydney an estimated 8000 people attended the Rally where Prime Minister, Julia Gillard, announced the roll out of the NDIS. People with a disability celebrated everywhere.

I have been a strong advocate for the NDIS since 2006. In 2006 I heard the late Dr Paul Collier, wheelchair user and quadriplegic, speak of the self-directed funding he received in Britain through the scheme that they have there. Dr Collier explained how he received money through the scheme and directed it to areas of his life that he felt were crucial. He didn’t need to wait for some agency to decide what he could get, he received his money and budgeted it for his own needs as he saw fit. I remember being in awe of his holiday snaps to Canada where he had used his funds to take a carer with him. It was inspiring stuff.

This is what we are seeking here in Australia. We want a scheme where people with a disability can direct their funding as they see fit. No waiting lists. No waiting to see if some agency believes you are a priority. Just a scheme funded in a similar way to Medicare where people with a disability can receive funds and use these funds to pay for carers, equipment, adjustments to their car so they can get about, funds for accessible taxis and so on. This scheme will open up the world for them. People with severe physical disabilities will be able to have a shower everyday rather than just once or twice a week if they are lucky. Carers who are often into their 70s and still caring for their disabled kids will be able to afford respite care thus greatly releasing the pressure on them.

In previous issues of The Rebuttal we have encouraged the Deaf and hearing impaired communities to articulate their needs as the NDIS is developed. It was true then, as it is true now, that the NDIS has been dominated by the needs of people with physical disabilities, care and respite. Nowhere were we hearing of the needs of the Deaf and hearing impaired communities. Not in the mass media anyway. Our deafness representatives had been active in putting in submissions to various enquiries about the NDIS about deaf needs but publicly stories are dominated by care issues and the needs of people with physical disabilities. It was pleasing to see that at the NDIS Rallies that the Deaf stood side by side with other people with disabilities.  Thus letting our pollies and decision makers know that we had a need too. In the last few months Deafness Forum had also been active and vocal about the need of the NDIS. They believe in “cradle to grave” support for people with a hearing loss. Deaf Victoria has also been extremely active.

After the Rally on Monday I was driving home. As you do when you drive your mind tends to wander. I started thinking about the needs of the deaf and the needs of those with physical disabilities. On the right shoulder was Gary Fireandbrimstone. Mr Fireandbrimnstone is tough, he was telling me there should be no compromise, the needs of the deaf are equal to anyone else in the NDIS and that we should not accept second best. On the left shoulder was Gary Reasonableanddiplomatic. “Surely”, said Mr Reasonableanddiplomatic, “People with severe disabilities should come first, they are a priority and the deaf can wait. We have Employment Assistance Fund to access interpreters and captioning in employment , NABS, free hearing aids til we are 26  and so on”  Mr Fireandbrimstone was having none of it, “Rubbish, our needs are less visual but no less important.” Mr Reasonableanddiplomatic disagreed, “..But we can get by til those with severe physical disabilities have their more pressing needs met.” This was the moral argument I was having with myself.

Now Facebook is a wonderful tool for evaluating moral dilemmas. I decided to put up a rather wordy status and see what responses I would get. The status read, “A question for the Deaf on the NDIS … There are parents who are in their 70s still caring for their disabled kids, there are people with physical disabilities that can get out of their house maybe once a week, there are people with physical disabilities that can get a shower twice a week if lucky … Can the deaf wait to get their needs met under the NDIS …. Are the issues for the deaf equitable … Or should the
mentioned scenarios get priority before the needs of the deaf are even considered? (and yes I am very much being a Devil’s Advocate.)”  Responses to this from friends generally were along the lines of, “Yes, but only if we have an ironclad guarantee that deaf needs will be met later.”

But one friend took umbrage to this statement and inboxed me. My friend was quite frustrated with me. It’s not often people call me soft in deaf politics but she did. She had this to say, “…You know I admire your work Gary. But sometimes you seem to need a crash course in politics. I can’t see that you have a role as Devil’s Advocate. The deaf need the strongest, single minded advocacy. They have always been sidelined and always will be disadvantaged by having an invisible disability. The HOH regularly deny that they have needs. The wider public do not understand the imperative. Yet communication is one of the single most important human needs. Now is not the time to suggest that others need help more. It is not a good tactic to play “reasonable chap.” Who demands more, wins. Wheelchair activist demonstrated that years ago.”  She will remain nameless and I have enormous respect for her. What is more, she had a point.

So I decided that I would put up another status and see how people responded to her hard-line stance. This is what I said. “Believe it or not I have just been chastised as being too soft in the NDIS approach and I have enormous respect for the person that did it so will try to summarise our discussions … Suggestion is that if we allow the other groups to take the high ground that the deaf will get left behind.. We need to be as loud and demanding as all the other groups , even unyielding in our demands … fair point .. We need stories that hit home and show the cause, in the same way as stories about people with physically disabilities are being prisoners in their own home ….100 Deaf stories that show the need for the NDIS ….What can we do to make the case more prominent??? Cradle to grave wont hack it, we need real life stories, real life examples ….Shock and awe tactics???? We could highlight the high incidence of mental health problems among the deaf perhaps? Dr Hogan on the weekend suggests that stressors of deafness mean deaf people are more likely to be ill and die six years younger than the general populace …Dr Hogan also suggests that our obsession with technological solutions means we forget the human and mental health factors of deafness. What is our campaign missing???”

Responses to this were generally supportive. Particularly of the need to get the stories of the needs of people who are Deaf and hearing impaired out there and understood. But there was one voice from Martin who was more cautious. Martin had this to say, “Not wishing to rain on your parade but … Please let us NOT become splintered in this process. One of the greatest things I got out of the Rally for the NDIS is the fact that we were together with one aim – to have our human rights met in an appropriate way. Yes – I agree that we have different needs and aspirations and yes they often differ disability type to disability type but fundamentally we have the same aim. And that is to be full members of the Australian community by being provided with the appropriate supports that allow us to work, travel, play and fully participate in our community. I believe we must grasp this opportunity for change as the disability community not as the disparate groups representing different types of disability. Yes we do need to be clear about what proper supports that individuals and groups need but let us still keep one voice. My fear is that as did happen during and after the Year of the Disabled Persons we will become fractured and separated along disability types. Once this happens Government will again appease various groups with tidbits but not address the whole issue, ensuring all people with disabilities get their human rights with dignity. Sorry about the soapbox but I am so proud to be a person with a disability after seeing all the different groups at yesterday’s Rally I don’t want that undermined.”

I have enormous respect for Martin too. He has been involved in disability politics since a little bit before when Noah built the Arc. He had a point too. In a single minded push to have our needs recognised do we run the risk of divisiveness and thus fragmenting the successful NDIS campaign? This is the dilemma, how do we push our needs hard without it looking like we are throwing our toys out of the pram. Martin is correct, the one voice is powerful. But not if that voice is not articulating our needs and other needs are dominating. We need that ONE VOICE talking about our needs and providing anecdotes of our needs on an equal platform. Now I agree that at the moment there is a crisis of care support and respite, it is really inadequate and should perhaps take priority early in the NDIS. But that does not mean the needs of the deaf and hearing impaired are less important. They need an equal and powerful voice.

It is worth noting that in the media releases that announced the working groups for the NDIS yesterday there was not one DEAF or hearing impaired representative there.  I later discovered that the intellectually disabled, who make up 62% of the disability population, did not appear to have a representative either. Apparently there is no representative for Aboriginals with a disability either despite them having important cultural needs in the delivery of the NDIS.

Yet on the working groups, as far as I can see, there are six groups directly representing carers and three representing physical disabilities. I have no problem with this but it suggests that the NDIS is being dominated by the issues of people with physical disabilities and care needs. Yet the deaf and Aboriginal groups that make up a significant part of the disability population have no direct representative. I know there are people on the working groups who are empathetic to the needs of the deaf but there is nothing more powerful than a direct anecdote to explain why the deaf have needs coming from someone who has a real life experience of what they are talking about.

I have a real fear too of the rapid rise of the terminology that suggests ‘Significant Disability.’ If you have been following the media releases you will see regularly that the NDIS is being designed for the needs of people with a ‘Significant Disability’. Who is going to decide what defines a ‘Significant Disability’? If the designers of the NDIS are predominantly people with physical disabilities and carers how can the deaf ensure that they have a voice that shows just why deafness is a ’Significant Disability’? Indeed an integral part of the Aboriginal experience of disability is their culture. Who is going to incorporate this into the design of the NDIS if there is no Aboriginal voice?

ONE VOICE … Yes! But that voice must be a voice that expresses the needs of all disabilities equitably. I have real fears that the current working groups will not be able to do that. We need to talk about it now to ensure we are not left behind. Be unyielding in this but at the same time support the needs of all the other groups. All we want is equitable representation, at the moment I do not see this happening.

With respect to all those involved in getting the NDIS up and running, it’s a big job!

1989 was my year of awakening. In that year I commenced work at the then Royal South Australian Deaf Society. I became life long friends with Dr Don Cresdee and in one of many long chats that I had with Don he told me about the Deaf President Now rally that had happened at Gallaudet University the previous year. Of course Gallaudet is the famous University for the deaf in Washington DC. One must remember that this was before the Internet, Facebook and Twitter. News generally filtered in very slowly. Dr Don was a past student at Gallaudet and he was in the know. I remember that he had somehow obtained videos of the Deaf President Now rallies. They fascinated me.

Here was a group of Deaf people fighting for what they believed in.  The rally had been about electing a Deaf President at Gallaudet. In its wisdom the Board of Management at Gallaudet had elected a hearing person to the post of President. This was despite the fact that there were two Deaf candidates for the post that were imminently qualified. The Deaf students at the University erupted. They wanted a Deaf President and they wanted one NOW. They took control of the University and sent the University into lockdown.

The videos that Dr Don had obtained were eye openers. They showed Deaf people campaigning. Angry Deaf people protesting passionately for their rights and taking control. They locked the gates and prevented any one getting in. Earlier this year Julia Gillard was physically accosted by angry Aboriginal protesters, well these protesters were small fry compared to the protesters at Gallaudet.

The Gallaudet Deaf President Now protest received mass media coverage in America. Famous people, both Deaf and hearing, lent their support. What fascinated me, among other things, was that the videos were captioned. THE NEWS CAPTIONED??? In 1989, in Australia, we were still a decade away from such access. What’s more there was actually a news program especially for the Deaf … Deaf Mosiac.

I remember as the rally unfolded the choice of the students, I King Jordan, lost his nerve. He had apparently met with the Board of Gallaudet who had convinced him that the protest was futile. He tried to get the students to back down. Apparently he was worried that people would get hurt, property damaged and that the reputation of Gallaudet would be tarnished. The students refused to back down despite his pleas. I remember at the time thinking he was letting the troops down but the reality is that it could not have been easy for him.

There is a fascinating account of the Deaf President Now rally on the Internet. It tells of the meeting that the students had with the hearing president elect. The president elect, Zinser, apparently apologised for not knowing sign language. She was just beginning to learn and ambitiously said that she would learn quickly and soon would not need an interpreter to communicate with them. She was described as a nice woman, who seemed sensitive but really did not listen.  Her pleas for “shared agendas” and “compromise” were shouted down. The students were having none of it. It was a Deaf President Now or it was nothing!

What is most fascinating is that the President elect, Zinser, actually went on record as saying she thought it entirely feasible for a deaf person to “one day” become President and that she would be encouraging deaf people into policy and management positions. (Where have Deaf Australians heard this before???) Apparently Marlee Matlin was brought into help with negotiations and she was furious when Zinser said this. “ I’m tired of the same old news that a deaf person will ‘someday’ become this or that”,  she is reported as saying or words to that effect. (And where have we heard that before too.)

The students were determined. They were going to win and they did.  Apparently the students went as far as hot-wiring Gallaudet buses and driving them to the gates of Gallaudet to act as barriers.  Eventually the students and their determination led to Zinser resigning and the position being offered to I King Jordan.  I King Jordan was already a dean of the College of Arts and Science within Gallaudet. He was obviously very skilled. It is baffling then that later in the piece one of the Gallaudet Board of management trying to explain their decision said, “We felt the Presidency of Gallaudet is a very complex and demanding job that requires experience, skills and knowledge related to administration. Knowledge and experience of deafness started to become less important.” Someone was later to ask Zinser if she would consider heading a furniture manufacturing company to which she answered that, “… she had no experience in furniture.”, thus implying that to administer a furniture company you needed knowledge about furniture. BUT … when it comes to deafness, a knowledge of deafness doesn’t matter! !!?? Sounds familiar doesn’t it? Incidentally in not appointing I King Jordan initially the excuse was, “. …we felt he needed more time.” I wonder where we have heard that one too.

What the 1988 protest did for me was show me, perhaps for the first time, what human rights were all about. For the first time I saw a group of deaf people mobilising for what they believed as right and just.  They wanted the world to see what deaf people were capable of. They knew that a deaf person at the head of their University would demonstrate faith in the abilities of deaf people and would inspire deaf people for many years to come. They certainly inspired me. In fact I have spent a whole career advocating for change using the principles and arguments they put forward all those years ago.

There are paradoxes in this. The first paradox is that I King Jordan, in my view, is not Deaf, well not culturally any way. Arguably he is a hearing person who cannot hear. He lost his hearing when he was 21 in a motorcycle accident. He certainly embraced and emphasised with the Deaf community but he, like most members of the Deaf community and its leaders, learnt sign language and about the Deaf community very much later in life. He, like many others, after he had developed a mastery of sign language became accepted among the Deaf community. But is he really Deaf in the real sense of a word as say Colin Allen, President of the World Federation of the Deaf. Allen, of course, was born Deaf into a Deaf family and used sign language (Auslan) from birth. He is one of the natives, so to speak.

The second paradox is that later I King Jordan became the subject of a student protest himself. He resigned as President in 2006 having overseen the change in Gallaudet from a College to a University and dramatically increasing its capital. Shortly before he resigned he was involved in selecting the new President. He was accused as selecting the person who he had “groomed” for the role and of having a selection process that was not open and accountable. Ironically the President they chose was deaf but this time the students believed that she was “not deaf enough”.  Is it a case of the Deaf community becoming too militant perhaps? Or perhaps a case of people like I King Jordan being a big fish in a small sea and them wanting to see a “Real Deaf person” in the role. That is another debate for another time.

But the fact is that the 1988 protest by Gallaudet students made the world sit up and take notice. It inspired a generation of deaf people to aim high and fight for their rights, and I was one of them. I King Jordan was later asked what the original protest and his appointment as President had achieved for deaf people. He had this to say, “How did I improve the lives of deaf people? What happened is, the lives of deaf people improved because people who are not deaf saw that I was a successful President. When I succeeded as President, they saw, oh, deaf people can do this high-level job. So if deaf people could do that, then they can probably do other jobs as well. And I think the most important success I had, the most important thing I’ve accomplished in 19 years as President of Gallaudet is to have succeeded as President because by doing so I become a model for success and other people, young and old alike. They know they can succeed as well.”  And to me this is the lesson that the Deaf sector in Australia need to heed. As for deaf people they need to heed the fact that remaining silent achieves nothing, speak up or miss out!

• Congratulations to Deafness Forum Australia on a magnificent Deafness Summit in Melbourne from April 28^th to 29^th. You should be very proud.

• Information in this article has been sourced from:

Deaf President Now

http://books.google.com.au/books?id=wG6JD6zLdh4C&pg=PA94&lpg=PA94&dq=f+president+now+rally&source=bl&ots=X55Wp7vguV&sig=PLbIvmwBZa70fkJiL0URDgthbiw&hl=en&sa=X&ei=e9ydT8vGENGQiQep68TkDg&ved=0CDYQ6AEwAw#v=onepage&q=f%20president%20now%20rally&f=true

 

NPR EXCLUSIVE:
I. KING JORDAN, OUTGOING
GALLAUDET UNIVERSITY PRESIDENT,
DISCUSSED CAMPUS PROTESTS AND
FUTURE OF DEAF EDUCATION
TODAY ON TALK OF THE NATION

http://www.npr.org/about/press/061129.jordan.html

A friend made an interesting point on Facebook this morning. She pointed out that Government supports such as the Auslan For Employment Scheme have led to a rapid increase in the price of Auslan Interpreting.  She was suggesting that if Auslan interpreting was recognised and covered under the much vaunted National Disability Insurance Scheme (NDIS) then it would lead to ever increasing prices.  Paradoxically this will make interpreters even harder to source. This is an issue that we will have to confront if Deaf people succeed in getting Auslan interpreting on the agenda for the NDIS.  Namely that by getting Auslan interpreting recognised under the NDIS we will create more demand. Supply has to meet that demand and if it does not, the law of economics dictates that prices will rise. But this isn’t the only problem.

Now it won’t just be Auslan Interpreting. It is likely to include live remote captioning too. Hearing impaired people that do not sign will want to access live remote captioning for a variety of situations. Perhaps they will go to a wedding and want to access speeches and the ceremony. They will book live remote captioning. Suddenly it won’t just employment and education that uses live remote captioning but a whole range of social and everyday functions like the doctor for example. As far as I know Australia has three major suppliers of live remote captioning. Will they be able to cope with the rapid spike in demand?   As with Auslan interpreting, when demand outstrips supply prices will rise.

Then of course those people that want to access live remote captioning will want the technology that allows them to do so. NDIS funds are supposed to be very much self-directed.  You use your funds to purchase services and technology to meet your access requirements. To access live remote captioning laptops and audio devices will be required. For the Deaf that want Auslan interpreting this will also be the case. As the National Broadband Network becomes operational online interpreting through Skype is going to be more and more accessible. Deaf people will need laptops and audio devices to access online interpreting too.  Technology providers are gonna make a mint.

In Finland deaf people can apparently access funds that allow them to book interpreters for a trip down the pub so they can socialise with their mates. If we have self-directed NDIS funding how many of us will use it to book interpreters for social functions? Gone will be the days when Deaf people wanting to pick-up at the pub checked their pockets or hand bag for the trusty notepad and pen. Deaf guys are gonna be using interpreters to relay their pick-up lines.  The mind boggles.

Then of course we have hearing impaired people that need technology like listening devices for the TV.  Or they want improved hearing aids. Or their cochlear implant becomes out-dated and they want the latest 1000 frequencies model.  There are bluetooth devices that assist listening to your mobile phone or even your home phone. Previously unaffordable, NDIS funding will be used to buy these too.

It won’t just be the Deaf it will be the blind too. Anything from everyday mobility devices, computer hardware, computer software, house designs to improve their mobility about the house and even human aids like readers or mobility guides will be sourced with NDIS funds.

Where will it all end?  People with disabilities all over Australia are going to want, want and want. Will the NDIS be able to cope with the demand?  Will the system even be able to meet the demand as we all scramble to use our self-directed dollars? Will it give rise to, ”cowboy support”,  as unscrupulous people see the NDIS as a quick way to make a buck. Spare a thought for the people charged with developing the framework for a workable NDIS. It is going to be a nightmare.

People with disabilities in Australia are grossly underfunded. Priority has been, and in my view rightly so, to address the needs of those who rely on carers and who need support for everyday tasks such as hygiene, being fed and getting out of the house. That said other disability groups have rightly asked the question – What about me?

On Monday 30^th April there is a rally for the NDIS. Around Australia rallies are being held where people with a disability are going to let the Government know just how important the NDIS is. Deaf people are being called to arms also. Deaf Victoria has been particularly vocal in calling people to arms. Others around Australia have been doing likewise, kudos to all who have been involved in the campaign for a Deaf presence at these rallies. It is Important that Deaf people are heard.

This is just the beginning. Establishing the operational framework for the NDIS is going to be an extremely complicated business. It may well be that Governments will say the deaf get enough already. They may say that the Auslan for Employment Scheme (AFE) is already providing. They may say that NABS is meeting needs. They will point out that AFE is flexible enough to be used for live remote captioning.  They will argue powerfully that our need for an interpreter at our sister’s wedding does not equate to being able to get a severely disabled person out of bed and fed in the morning.

I have no doubt there is going to have to be a lot of give and take. Deaf people are not going to get everything they want. There will be limits. In the early stages priority will be to those that have basic everyday needs just to live in their own homes and get out and about. That does not mean that people who are Deaf and hearing impaired will miss out but crying out ACCESS is not going to cut it. Now is the time to start thinking HOW and REALISTIC in terms of what the NDIS should provide.  The rallies on Monday 30^th April are only just the beginning. Much needed as the NDIS is it’s going to be along hard road.