Lonliness of The Long Distance Runner

The tough of the track
With the wind and the rain that’s beating down on your back
Your heart’s beating loud and goes on
Getting louder and goes on even more
‘Til the sound is ringing in your head
With every step you tread
And every breath you take
Determination makes you run never stop
Got to win got to run ’til you drop
Keep the pace, hold the race
Your mind is getting clearer
You’re over halfway there
But the miles they never seem to end
As if you’re in a dream
Not getting anywhere, it seems so futile  (Iron Maiden, Loneliness Of the Long Distance Runner)

I felt like this recently. Firstly it started withe Dimity controversy. We have been fighting this battle for so long. For me it is about accurate and truthful information. Particularly for parents of deaf children. I have been fortunate to have worked with families of deaf kids over a number of years. It’s hard work for the parents, they are bombarded with information left right and centre. As soon as the child is diagnosed deaf the first thing they will hear from their doctors and experts is usually about SOUND, about enhancing residual hearing and cochlear implants. In this day and age there are still experts that will tell you that to teach a child to hear with either their residual hearing or a cochlear implant they must focus on hearing and listening and that sign language will hinder the acquisition of listening skills. This is despite the fact that research abounds that deaf kids with access to speech and sign language perform better in language receptive tests. There is even research that shows that kids exposed to sign language early are actually better lip-readers and have better English literacy. But all of this is ignored.

For example Mogford (1987) concludes, “that whether the deaf child’s education was carried out by means of oral speech or by manual communication seems to have no influence on lipreading skills. “  In further research, Arnold and Köpsel (1996), find,  “..that mastery of sign language, assessed by teachers, does not correlate with lipreading, although it does correlate with reading, which, in turn, is positively correlated with lipreading.”  The latter research suggests that deaf children who have mastered sign language perform better in literacy tasks such as reading and writing and this mastery of literacy can, in fact, enhance the ability to lip read. It is generally accepted acquisition of sign language has no negative impact on the proficiency of the acquisition of speech and listening an can, in fact, enhance the acquisition of spoken language through reading and writing. Put simply because these deaf kids have access to more information through sign language, and reading they have a stronger vocabulary which is then translated into stronger oral skills such as lip reading and speech development. Consider a child that signs. Lets pretend someone  signs enormous to them.  When they see the sign enormous they are also likely to see the mouth pattern enormous, with what hearing they have they may hear the phonetic sounds of enormous and so all all in one you have the concept the mouth pattern and the sound represented .. connect connect connect. Makes complete sense doesn’t it? Sadly to people like Dimity and her esteemed colleague Dr Bruce Sheppard it doesn’t.

Dr Sheppard is oft quoted in The Rebuttal for his ABC radio interview. For those that cannot remember this we will repeat it again. ”

… But especially we wanted our children to develop language. Because it’s not well known that the average profoundly deaf person who signs generally doesn’t develop terribly good language and they often can’t understand a great deal of what they read and they can’t make other people understand what they’re thinking.” (radio interview with Phillip Adams in 2006)

This is, of course, poppycock. Research shows that kids that develop good proficiency in sign language often perform superior to kids only exposed to oral language. Yet Dr Sheppard has no qualms in  misleading the public to believe the opposite so that he can attract money to his oral Centre for deaf  kids. Dimity, likewise, misleads the public with theatrical statements about the eradication of deafness (like polio) and how deaf kids can be FIXED with today’s technology.  That Dimity and Dr Sheppard are borderline LYING to attract money to their deaf centres is not far from the truth. The scandal of all this is that it gives parents a false sense of hope and later if their kids don’t perform as well as they thought they should they often do not blame the EXPERTS they blame themselves for the lack of progress by their kids. I cant begin to tell you how many times I have heard parents say to me, “It is my fault, I didn’t do enough to talk to my child.” Its a wicked game that Dimity and Dr Sheppard are playing.

But the miles they never seem to end
As if you’re in a dream
Not getting anywhere, it seems so futile.

And then last week there was that conference.  This huge conference centering on employment support for people with a disability is being organised by a company that dubs itself  “THE NATIONS LEADING EVENT ORGANISER.” Its not a cheap conference at $2099 a pop for the two days. I got hold of the program and was shocked to see that not one organisation that represents disability that is run by people with a disability was on the agenda. A few emails to my contacts showed that they were not even aware of the conference. I managed to get myself in through my involvement with a high ranking Government committee that I am part of. I also managed, over a period of time, to get the conference organisers to offer a cheaper rate for “charities” to attend the conference. But this rate at over $1000 was still prohibitive.

The Government committee organised my registration. At my request they checked that sign language interpreters would be provided. They were assured that they were. I told them that until I had heard who the interpreters were I would not hold my breath that they would do as they had promised. This was back in August. Last week the Government committee that I am part of contacted me and asked which interpreters I wanted for the conference. Alarm bells immediately rang. I emailed back and asked why they were asking. I was told that the conference organisers had stated that they were unable to provide interpreters. The Government committee, wanting to ensure I had access, were willing to cover the cost.  They must have been a bit taken aback when I told them that there was no way that they should pay and to, “leave it with me.”

So the conference organisers received a rather blunt email from me, CC’d to several of their major speakers and disability advocates around Australia pointing out that it was not acceptable that they would not provide interpreters when they assured me they would. I had taken the liberty to contact an interpreter provider agency to see if they could provide for the conference. They assured me that at the time of the conference there would be no problems to organise what was needed. I pointed this out to the conference organisers and stated that, “One can only assume that you have baulked at the cost of providing the interpreters.” I let it be known that although the Government Committee were willing to foot the cost that they should not have to and that it was the responsibility of the NATIONS LEADING EVENT ORGANISER to plan for these access needs and not add them on later. In short I said cough up and that the NATIONS LEADING INTERPRETER  PROVIDER were standing by to arrange the needed interpreters. ( I didn’t say that but I wish I had.)

Within 5 hours the CEO of the conference organiser company emailed back. He said if the Government committee were willing to cover the cost he would be MORE THAN HAPPY TO NEGOTIATE WITH THEM. ( I am sure he would) He pointed out that my registration fee was $2099 and that the cost of the interpreters was $2800. Meaning they would make a loss of $701 on my registration.  Said the CEO, “I am sure you will understand that this cost is not commercially viable.” Of course this triggered a second email from me where I pointed out that under the Disability Discrimination Act that his company had an obligation to make the conference accessible, whether it be by interpreters, captioning or other means. I pointed out that they could try to plead Unjustifiable Hardship under the DDA but given that they were about to make many thousands of dollars profit on a conference about disability I didn’t think they had much hope of that. So I reiterated that they needed to pay and organise the interpreters as soon as possible or that I would make an official complaint to the Australian Human Rights Commission.

In the middle of this the company received an email from the NATIONS LEADING DISABILITY ADVOCACY ORGANISATION supporting my stance and urging the company to review its policies immediately. I also received several emails of support from people that I had CC’d including one who threatened to withdraw as a speaker if the company did not comply. So anyway I sent this email at 10pm. At 9 am next day the company emailed me back stating they had reviewed their policies and that they would provide interpreters, apologised for any stress they caused and said, and this made me smile, that they looked forward to seeing me at the conference.They also confirmed that at all future conferences they would ensure access was planned after receiving an email from one of the people that I had  CC’d asking if they could ensure that this sort of thing never occurred again.

SUCCESS???   Well perhaps but in today’s day and age where the NATIONS LEADING EVENTS ORGANISER organises a conference about DISABILITY, does not plan access, is unaware of  its legal obligations and attempts to shift the costs and responsibilities to others one can not help but be appalled.  (They actually said they might consider paying some of the cost if they could get a cheaper quote from THE NATIONS LEADING INTERPRETER PROVIDER.)  It’s no success at all, it shows a distinct lack of progress when people with disabilities must CONSTANTLY go through this crap whenever they want access.

Run over stiles across fields, turn to look at who’s on your heels
Way ahead of the field, the line is getting nearer but do you want the glory that goes
You reach the final stretch, ideals are just a trace
You feel like throwing the race, it’s all so futile

Run on and on
Run on and on
The loneliness of the long distance runner   (Iron Maiden, Lonliness of the Long Distance Runner.)

And we run on simply because the alternative is unpalatable.

 

 

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Perspectives From Paul Bartlett – Deaf Aussie Expat.

The Dimity Dornan furore has seen many words written by various people from all walks of life. I have made a few comments and just about all of my friends and acquaintances have said something as well. So I am not going to reiterate what others have said. Let me sit back for a minute and look at this objectively.

Why the hell do hearing people get infected with the desire to “fix” deafness? I know this has been written about so many times by others. But what does it do to them? To help them fulfil an altruistic need? To ensure they do their one good deed a day? To make money? To fix the world?

I can understand them wanting to fix deafness in latter deafened adults as there are so many of them about. The RNID in the UK says 1 in 7 have some form of deafness. This is a lot of people and equates to 14% of the population. If 90% of this 1 in 7 lost their hearing after they turned 18 then that’s a lot of hearing people who want to hear again and I cannot really blame them for wanting to do this and there is a lot of money to be made from them.

But if you are talking about children, 1 in 1,000 are born severely or profoundly deaf and statistic is pretty much consistent throughout the world. In 2009, there were 295,700 births in Australia and 1 in 1,000 equates to 300 Deaf babies born in Australia every year, or about one a day. That is not very many at all and a number which hardly anything to frighten people. And by the time children are of school age, this incidence rises to 3 in 1,000, or another 600 more deaf children to join those who popped out already deaf. So we have 900 deaf children to add to our community when they turn 5.

So why are people so terrified about this “scourge” which must be “eradicated”? The problem is, deafness does not discriminate. Deaf babies are born to the moneyed classes as well as those who don’t have any, and everyone else in between. Moneyed people have clout, witness the John Tracey Centre in LA, the founder Spencer Tracey was a famous actor and had a deaf son. And the Shepherd Centre in Sydney, Doctor Shepherd was the President of the Australian Medical Association at one stage. Very powerful people indeed.

But deaf babies are a pitiful spectacle: “The poor little things can’t HEAR. Here is some money to make things right.” Fair enough, I do not dispute this, poor little puppies tug at our heartstrings was well.

But what I do not understand is why so many hearing people set themselves up as bosses and leaders of the Deaf community? Every Deaf Society has a hearing boss apart from Queensland. Just about all the organisations providing services to Deaf people have hearing bosses, Deaf Australia excepted. Even during the Deaf Olympics 6 years ago, it was hearing people who ran the show.

Why are we deafies allowing this to happen? Why are we allowing hearing people to be the decision makers, after all it is various committees which appoint these bosses not individuals. Why can’t we deafies get ourselves on these committees? Why are these committees not allowing deafies to make the decisions? If you look at other minority groups, their bosses and leaders are members of their particular minority group.

I refuse to support the argument that Deaf people in Australia do not have the required skills, this is rubbish. There are many Deaf people out there who are highly skilled and holding post-graduation qualifications. There are many Deaf people out there who are proven managers and decision makers. Why aren’t they up there with their hearing peers? Many various Deaf-led organisations in Australia are thriving and we are internationally recognised. A previous President of the ICSD was Australian and the current President of the WFD is also Australian. Australians have a history of sitting on International board s over the decades. So we have the talent, and the international reputation to go with it.

This is something we need to look at. 900 Deaf children joining our little community a year is a lot. I accept most of these will be lost to the scourge that are cochlear implants but we can get them back surely? Get them to embrace signing and our community. Work on their parents, invite them to our functions and be as non-threatening as possible. Welcome them with open arms. Don’t argue with the oralists, work with them, identify common interests and goals and set up joint campaigns.

Paul Bartlett is a proud Deaf Australian. He has resided in London since 1996. He is the former CEO of DeafPlus.

TRANSCRIPTION: Dimity Dornan Speech, Sydney, on 24 October 2007

The following is a a video of a speech given by Dimity Dornan in the presence of the then Governor-General at Kirribilli House, Sydney, on 24 October 2007 – nearly 4 years ago – where she likens deafness to polio 20 years ago, and claims that very soon hearing loss will be able to be ‘decimated’ as an illness. There is no captions on the video, but thanks to Rachael McQuillan and her husband Lenny, a transcript follows.

The Transcription:

Thank you, your excellency for inviting us to your beautiful home and for launching hear and say worldwide.

It has taken us quite a number of years to get to this point and it is a very exciting moment, and we are very proud to be here.

And I’d like to tell everybody a little bit about why we’re here, um, in detail. Because some of you, I don’t think, will be aware of all of the little bits and pieces that go together to make up what we’re hoping to do with hear and say worldwide.

I’m very honoured to stand in front of you today as we travel into a world of global hearing health, with the official launch of our new export program, hear and say worldwide.

The undertaking by the governor general to support this program is a testament to the importance of hear and say worldwide, and should be  seen as a real indicator of how close we are to the delivery of our vision of being the leader in the provision of access to listening and spoken language for children with hearing loss and their families worldwide.

Hearing loss, as we know, is the most common disability in newborn babies, worldwide, and it’s often diagnosed too late for optimal treatment. And in addition to this sad fact, there are presently only enough trained, uh, listening and speaking professionals to effectively treat 8% of all the children and adults, uh, worldwide with hearing loss. The good news is, today we stand where polio was 20 years ago. Through a combination of newborn hearing screening and most important point, the, our wonderful cochlear implants and digital hearing aids and early auditory verbal intervention we now have the potential to decimate the very serious consequences of hearing loss globally.

Recent research conducted both here in Australia and overseas has shown that the focus for treatment for hearing loss in babies should be on the brain. And that the ear is merely the conduit to the brain. The most urgent implication of this research is that hearing loss in babies is a neurological emergency, because the optimal developmental window for the auditory brain, for learning to listen, develop, and understand speech, closes very early.

This means that early diagnosis and followup intervention is critical to ensure that babies learn to listen, um, and through hear and say worldwide early intervention of our program will assist in alleviating this critical need for appropriately qualified hearing health care professionals and provide much needed teaching resources for this market. For example, we are currently working on a teaching resource for the 15000 children in china who will receive a cochlear implant in the next 5 years. Hear and say worldwide is a systematic approach to building on Queensland and Australia’s brain based economy by exporting knowledge and skills into the international market. Already, we’ve trained professionals in 12 countries over the past 7 years.

This year, we have already worked in Russia, I’ve made presentations in Germany, and Papua New Guinea, where we have a team ready and waiting to help those children who are needing our care. And we’re currently in the process of developing new programs for the malarian markets, and we’re very excited about this opportunity that we may be helping them to set up some cochlear implant programs by training their professionals there. And we have to thank for this the Queensland government, support from AusTrade, and the Australian institute for commercialisation.

A key to our success will be the development of close, strategic partnerships with our major technology providers. And I’m very pleased to recognise Mr Mark Salmon, the president for Asia pacific for cochlear in the audience. However, without the specialised therapy to support these technological devices, sound is just noise, and it is the specialised therapy that gives our hear and say centre children the ability to learn to listen and speak just like other children.

Now, to underpin this work, we have developed our research and development arm, which has it’s official opening shortly, the international hearing innovation centre in Brisbane, where we are combining leading researchers, such as the Queensland brain institute, the centre for cognitive neuroscience, and the centre for magnetic resonance, Australia university’s corporate partners, so that we’re building a hub of hearing research in Queensland to supplement the already great work being undertaken by the hearing collaborative research centre for Australia. Accordingly, they have recently announced their intention to co-locate a Queensland node of the hearing CRC with us at our new international hearing intervention centre in … in Brisbane.

Earlier this year Dr. Ventin Surf one of the co-founders of the internet, introduced hear and say worldwide to the Queensland business community when he stopped over in Brisbane, and he com- he shared with the audience his personal connection to deafness – Both he and his wife are profoundly deaf – and how his family has adopted the policy that no decibel will escape undetected.

[murmurs of laughter from audience]

It is this sort of passion and drive to remove the effects of hearing impairment that has brought us to this point today, where we can finally, officially launch hear and say worldwide, so, with this, I would like to express my sincere gratitude to all those people involved in getting us to this point in our journey. I hope they will continue to offer their invaluable assistance as we move further afield with this venture. I’ve very personally excited about what we can achieve with hear and say worldwide, because I believe that there is no better way for us to help the world, than to help people communicate more effectively with each other.

 

Thank you.

 

Thanks to John McGrgeor who brought it to our attention in the Facebook group: 10,000 signatures to have Dimity Dornan prosecuted- Deaf Cultural Genocide

FRAMING GRAVITY: Auslan Interpreted Art Exhibition Tour [If In Sydney, Do Come :-)]

AUSLAN INTERPRETED – BOOKINGS ESSENTIAL, Please RSVP ASAP:

The Event:

AARTBOXX Auslan Interpreted Tour

The Directions:

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Exhibition dates 21 October – 5 November 2011

Sydney College of the Arts, SCA Gallery, the University of Sydney

Balmain Rd, Rozelle NSW (enter opposite Cecily Street)

Gallery hours
Mon – Fri 11:00am – 5:00pm Sat 11:00am – 4:00pm
ACCESS INFORMATION
Venue is wheelchair accessible with accessible toilets on campus. Limited accessible parking available. Bookings essential.
Further information: AART.BOXX 11: Framing Gravity. Contact: Josie Cavallaro 02 9251 6499 ext 105, jcavallaro@aarts.net.au
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There is no X-factor in patronising judgement

Understanding Dimity

This is purely a speculative piece. Understanding Dimity is no easy task. She is a business woman and this article is an amateur analysis of her business mind. It could either be close to reality or way off the beaten track.

Ms Dimity is on the marketing campaign again. Dimity is the lady at the helm of the Hear and  Say Centre in Queensland. She is a staunch advocate for hearing technology and teaching deaf kids to hear and speak. Her Centre is at the forefront of oral education in Australia. She has won awards and fights hard to get funding for her Centre. Dimity recently won business woman of the year. Being the business person she is, she could not help but give The Hear and Say Centre a plug along with her philosophies. She is well aware of staying on track and being consistent with her message. She is an astute politician as well as business woman. Said Dimity, “Deafness is a scourge that can be eradicated and consigned to history, just like polio.” It seems an extreme statement and may have been taken out of context. However, Dimity has form for similar statements so it seems unlikely. Dimity is fond of telling the story of the little deaf boy she met at the bus stop. He was crying and had lost his bus money. She was moved by his inability to communicate and was inspired to set up the Hear and Say Centre. The rest, as they say, is history. You can read about Dimity and her award at this link – Dimity 

Dimity is very much of the view that deafness is a bad thing.  For many, deafness can be a bad thing. Later deafened people find losing their hearing traumatic. When a person loses their hearing  they face challenges just to communicate with their family and friends. Things that they may have valued like music are no longer accessible. They cannot speak on the phone. Work meetings become impossible. Adapting to deafness is hard work. For them a cure to deafness would be a godsend. These people and their families will relate to and embrace Dimity’s message. For most hearing people becoming deaf is a frightening concept. They value what their hearing provides to them. The majority will embrace Dimity’s message if only because it is all that they know. Indeed in Australia most people will read what Dimity has to say about eradicating deafness and be cheering Dimity on. Dimity knows this and milks it for all that it is worth. She knows that these people are the ones that will provide the bulk of the fund-raising dollar to her Centre.  Hence she is disciplined and sticks rigorously to message, never deviating.

Dimity also milks deaf children to the hilt. She knows that by raising the spectre of deaf kids, cured, speaking and enjoying all that hearing has to offer she will tug on the heart strings.  Richard A Friedman, writing in the New York Times described some of the motives that encourage people to donate. (Behind EAch Donation, November 2005) It is Friedman’s view that natural disasters inspire people to donate. Dimity knows this too. She paints a picture of Deafness being a disaster, a wreckage that must be prevented and fixed at all costs. People who are deaf are a rubble that needs to be rebuilt. What’s broken needs to be replaced and fixed. Deaf people are the demolished buildings that need to be resurrected. Dimity pushes this message for all it is worth. Deafness, make no mistake, is a disaster. That is what she wants the public to believe. Sadly, the majority do and these people are her market.

Friedman also talks about the types of people most likely to donate. It’s Friedman’s view that older people, rich people donate more. It is not limited to these people but definitely the older someone is and the more money they have, the more likely they feel the need to give back. You can bet your bottom dollar that Dimity has a strategy to target these business people; well established business people and older people. It is these people that are most likely to respond to her message and are her bread and butter. Possibly older people sensing their mortality, knowing that they could lose their hearing as they age resonate with Dimity’s disaster message. It’s bad enough that they may go deaf, but children? That’s terrible! Let’s fix it. Dimity did not win business woman of the year for nothing. She knows what she is doing. Indeed she believes so much in what she is doing that she will do all that is required to achieve her aim. She is as cynical and ruthless as the most hard nosed business person.

And then of course, Dimity plays on hope. She makes the comparison to Polio because it is a disease that we have beaten. She knows it has impacted on millions of people. By likening deafness to Polio thousands of potential sponsors can be attracted. Parents that see deafness as a deficit grasp at the hope. They enrol at the Hear and Say Centre. Numbers increase. Government funding increases. Like the buildings that rose from the destruction of the Twin Towers, lives can be rebuilt. There is hope for the future of any unfortunate child born deaf.  Sure the Deaf community finds it offensive but the Deaf Community make up a very small percentage of the population. They are not Dimity’s concern. She is on a mission and she is going to succeed no matter what. It is hard to write this as it is the very opposite of what I feel BUT a wise man once said that to win, one must get into the mind of the enemy. And this is a battle we must win.

And yes she targets the Deaf community. She does it for a reason. Mark my word when she made the Polio comment SHE knew it was going to offend the Deaf Community and its advocates. SHE wanted a response to keep drawing attention to her mission. SHE knows that the majority of people don’t understand the values of the Deaf Community and for them to understand is a long process. People know hearing but they don’t know deaf and indeed they don’t want to. To them hearing is normality; deafness deficit. When we all scream GENOCIDE it plays right into Dimity’s hands.  To most Australians deafness is something that needs to be fixed like cancer. To them comparing curing deafness to genocide is, for most, incomprehensible.  When the Deaf Community attack Dimity she becomes the victim. This good lady that is working hard to FIX deafness. How dare we attack her?! She will milk this negative publicity for all it is worth and turn it into a positive for herself.

And yes Dimity is dangerous. She is misleading people. She is giving false hope. Parents think their child can be fixed. And when the child doesn’t achieve normality anger, grieving, blaming and good old fashioned heart ache is the outcome. Yes Dimity must be stopped. Yes she is a despot BUT somehow we have to be smarter and not play into her hands. But how? People have compared Dimity to Andrew Bolt who lost a case in court recently for writing discriminatory things about Aboriginal people in his newspaper column. But Dimity is not the same. Bolt is just an egotistical journalist who is hugely not liked. Dimity is seen as some kind of saint who helps poor little deaf kids. While there are similarities Bolt and Dimity are, in reality, poles apart.

Colin Allen has given it a go and I believe he is on he right track. Rather than attack Dimity he has reminded people of Australia’s obligations under the United Nations Convention of the Rights of Persons with a Disability. Mr Allen has, in particular, highlighted the sections in the convention that state countries must provide access to sign language. But while Dimity does not embrace sign language she hasn’t, as far as I know, attacked its use. She has just promoted  her alternative. The United Nations also have a Convention of the Rights of a Child. A good lawyer will show that the rights of people with a disability and the rights of a child can conflict. For example the United Nations Convention of the Rights of the child states, ” ….that the peoples of the United Nations have, in the Charter, reaffirmed their faith in fundamental human rights and in the dignity and worth of the human person, and have determined to promote social progress and better standards of life in larger freedom.” A good lawyer is going to argue that allowing a child to be deaf is putting them at disadvantage, prejudice, inequality, poor education and so on.  All of the things WE point out happen to deaf people because society doesn’t provide fully for our needs.In short the United Nations Convention is a document that can almost be interpreted at will. As I said Mr Allen is on the right track but I am not sure just how useful the Convention will be in the long run.

Where Colin Allen has pulled a master stroke is by inviting Dimity to attend a Deaf Festival. Offering a hand of friendship to educate and inform Dimity of the positives of the Deaf community is a smart move. If she refuses it looks like she is snubbing people. But then and again, given the abuse she has received, justified abuse in many cases, she could argue that she did not feel safe and that is the reason she is staying away. Dimity holds so many aces it is not funny.

SO where to from here? How can we fight back? Well clearly we have to think LIKE Dimity. We have to sit back and THINK like the majority of Australians. We have to realise that our views and experiences of deafness are not that of most people and somehow we have to inform them without being  seen as extremist. When we we talk of genocide, when we talk of prosecuting Dimity – believe me WE are the minority and its not a view that a lot of people share because DIMITY is seen as a savior. When we use these extreme terms we lose the very people we need onside to support us and that is the general public of Australia.

I suspect that the only way forward is through positive stories and by promoting the Deaf community in a positive light. I suspect strategies like Colin Allen’s invitation to Dimity to take part in the Festival are the right way forward. My friend Bryn suggested inviting Dimity to the Australian Deaf Games, one of the oldest ongoing sporting events in the world. Perhaps we should be using the Deaf Games as a means to rebut Dimity’s views and show the Deaf community in a positive light.  Perhaps bringing out our big guns like Colin, the WFD President, Dean Barton Smith our ex Olympian at both deaf and hearing Olympics, our artists and academics who are positive role models, is necessary. Positive actions and positive stories this may be the only way that we can get people to see the other side of the coin.

Dimity just has too much support and influence.  We have to fight back but let’s not play into her hands.

 

 

Deafness Is Rife Amongst our Advocates

It’s an epidemic. Deafness is everywhere amongst our advocates. I speak, of course, of our representatives in the cinema captioning campaign, namely Deafness Forum, Deaf Australia and Media Access Australia. These organisations appear to lack the capacity to hear us. We, the consumer, do our best to let them know our feelings about the new CaptiView system that is replacing open captions. But no matter how loud we scream our discontent we seem not to be heard. One can only assume that our advocates are deaf to our voices.

CaptiView is the new system that is replacing open captions in cinemas around Australia. The device is placed in the cup holder at the viewer’s seat and has captions transmitted to it digitally. The viewer then must adjust the device and then synchronise watching the movie and the captions on the device at the same time. It can be adjusted so the captions can be in the field of the big screen so that the viewer can see the movie and watch the captions without missing too much. In theory it sounds great but the problem is most deaf people despise it.

It was introduced after the Australian Human Rights Commission threw out a submission by the major cinemas to be exempt to disability discrimination complaints. The cinemas had put in an application for exemption after doing a deal with our advocates for a minimal increase in open captioning. Our advocates accepted the deal with no detailed consultation with deaf consumers. Deaf consumers got wind of the deal and let our advocates know, in no uncertain terms, that it was pathetic and unacceptable. Deaf consumers were up in arms, and rightly so, and demanded greater access. Our advocates told us we were all wrong and that we should accept what was on offer. This was the first example of deafness in our advocates. They just could not grasp that the MAJORITY of deaf people DID NOT ACCEPT what was being offered. Thankfully the Australian Human Rights Commission listened to the consumer and the cinemas’ application for disability discrimination exemption was thrown out.

The chastened cinemas immediately came back with an offer of CaptiView with much fan fare. Suddenly, after eight years of crying poor, they had an answer. Go figure! CaptiView was the answer they said. It would give us access to a far greater range of movies. A plan for its rollout was released and on paper it looked fantastic. Our advocates were all lovey dovey. They all jumped on board at the urging of Bill Shorten who said it was the best that was possible. There was a lone voice, however, who we shall not name, who urged the advocates to slowdown. The lone voice said, trial it first and see if the CaptiView device is acceptable among consumers. Of course this made complete sense. Why spend many thousand of dollars on a device that consumers might find unacceptable? But of course our advocates were deaf to this advice too. In fact they told our lone voice that he should “tone it down” and that he should “pick his battles”. And so the roll-out of CaptiView began.

Of course the consumers were largely kept in the dark. They were fed spin about how wonderful it would be. They said we would have much greater access and that the outcome was fantastic. Our advocates, who originally urged us to accept the cinemas’ application to exemption to disability complaints, suddenly all jumped on board and began to claim credit for the wonderful new outcome that they had achieved (?!?) Well ain’t karma a bitch!

At first the objections to CaptiView were a trickle. There were some positive reviews to come out about CaptiView, but they all seemed to come from within the circles of our Advocates. There were media releases that our advocates, particularly Bill Shorten, milked for maximum exposure. Media Access Australia even sent someone to review the CaptiView and wrote about it on their website. Bizarrely the reviewer was a hearing person. But a couple of months ago deaf people began to really voice their displeasure about CaptiView.

To find out what deaf people really think of CaptiView all that is needed are lots of deaf friends on Facebook. And it is comments on Facebook that really show what deaf people feel about CaptiView.

The rumblings first began in July. Sporadic comments started to appear that were very negative about the CaptiView.The Rebuttal wrote about this at the Blog in July, http://the-rebuttal.com/?p=1347. This article highlighted some of the comments that were being made about CaptiView. At best people said they found the system passable but not great. At worst they said it was ”useless technology” that they would never use again.

Deafness Forum saw fit to respond to this article. They insisted that objections to CaptiView were only a few and that there were many that found the system useful. Well not anymore. It is very clear that MOST deaf people HATE CaptiView. Positive comments about CaptiView are as rare as hen’s teeth, but not by much.

It started with Michael’s Facebook post. Michael wanted to know if there were any movies available with open captions. This post turned into a full-scale criticism of CaptiView.  There were 16 comments and not one was positive. People bemoaned the lack of choice and expressed dismay at the phasing out of open captions. They complained about the stress the system placed on the eyes and how deaf children and deaf people with vision or physical problems would find the system very difficult to use. One person went as far as to suggest that CaptiView, at worst, was a health hazard.

Then there was John’s post. John vented his frustration at the phasing out of open captions at the popular Jam Factory in Melbourne. John posted a link from Media Access Australia who is promoting the roll-out of CaptiView to the hilt. John’s posting received 24 comments.  Various people commented, “I don’t like CaptiView, I’ve tried and tested it.” – “…really hate the CaptiView system, a piece of crappy 80’s technology with a bendy arm taken from a Spielberg movie”“This is too silly… where are our options and rights to watch a movie like everybody else? What really is happening is that we have to conform of what is given or said to us… a joke!”  These comments are hardly positive are they?

And then there was Kate. Like John, Kate protested the phasing out of open captions and expressed her displeasure with CaptiView. She received 24 comments in support. Perhaps the best came from Dean, who had this to say, Why are Australian cinemas waiting on the other countries to come up with the solution (The latest I hear they think caption glasses will solve some of the issues). The cinemas boast $100m profits annually. The digital changeover is happening around the world and you have to wonder why Australia can’t lead and develop the right technology that caters for everyones needs and then sell the concept to the world rather than wait on others. Cinemas will get their money back plus more and the community will be satisfied. Golly Australia leads in heart transplants, medical solutions, critical black boxes for planes – so you have to wonder if the cinemas interest and commitment is really there. Any marketing person would jump at this innovation! Nothing to lose but a lot to gain.” All we need is to cure the deafness of our advocates so that we can all be heard! Can Australia lead the way?

 

The organizations of men, like men themselves, seem subject to deafness, near-sightedness, lameness, and involuntary cruelty. We seem tragically unable to help one another, to understand one another.

John Cheever

EDITORIAL

It is hard to believe it has been almost two years since we collectively campaigned for better access to the movies for deaf people. The Big 4 Cinemas might have gotten away with their exemption application if it wasn’t for certain people within Arts Access Victoria and Disability Legal Service who explained what the ramifications would be if we didn’t fight this. From people power, determination and campaigning, we were able to persuade the Australian Human Rights Commission to overturn the Big 4’s application for exemption.

That was the first battle won. An advisory group to the Big 4 Cinemas was established. CaptiView was put forward as the technology to provide closed captions. It looked as if things might start going our way.

Then the second battle began.

CaptiView was forced upon us. It is a device that does not bother other hearing cinema attendees. It provides access to deaf people. It seems to be a win-win for the all. Except for one small issue – someone forgot to run a trial and check the community’s responses.

To be fair, many of us went with an open mind. Despite this many of us are disillusioned. Some were prepared to give it a go over a fair period of time. Others knew it was useless for them. Children can’t navigate CaptiView. Tall people have to slouch to watch the captions on the device. Small people (children for example) can’t sit comfortably to see the device. Sore necks, sore backs, tension headaches were experienced after using CaptiView. Viewer comfort and safety are real issues.

No feedback / evaluation forms were left for customers. How do we communicate to the Advisory Group to cinemas? How do we keep our organisations accountable? How do we even know they are attending the meetings, much less advocating for us? We, the community, are not consulted, not informed and our advocates are deaf to our voices.

With this in mind, Action on Cinema Access organised a community consultation meeting in the last fortnight. Support for the CaptiView devices was underwhelming.

Many griped about the lack of consultation. All accepted open captions might be a thing of the past but did not want their access options limited. They were fair and reasonable. All they wanted was the opportunity to enjoy a movie. As it stands CaptiView hinders and for many spoils the movie going experience.

It is time that deaf consumers, the paying customers, were heard. The deafness among our advocates, unlike ours, is curable. All it takes is a shift in attitude.

If anyone wants a detailed summary and a copy of the powerpoint used at the recent community consultation meeting, this is available. Email marniekerridge@yahoo.com.au. Also contact your organisations involved in the Advisory Group. Ask them to advocate for you for proper access. At the moment, it is just not happening.

All we ask is that our advocates hear and act on our concerns. After all, is that not why they are funded?

letters and articles to:

the_rebuttal@yahoo.com.au

All views expressed are the sole responsibilitu of the authors  alone.

 

Article by: Gary Kerridge

Editorial by: Marnie Kerridge

 

APOLOGY

In a recent Rebuttal article, “It’s a Scandal” concerns were raised by Mr Simon Shepherd that there might be grounds for mistaken identity, given the proximity of very few male Deaf Facility co-ordinators in Australia.  The Rebuttal apologised for any distress caused. Mr Shepherd would like it known that he empathises with the issues raised in the article but wishes to have it acknowledged that the person/s referred to are in no way related him. The co-ordinator in question in the article was in fact a culmination of a few people from all over Australia with educational influence. The term ‘he’ was used as a generic term, however we acknowledge this may not have been seen as such. We apologise for any misunderstandings.

The Mad Square: Boxes, Boxes, and More Boxes

Our physical differences make us who we are, otherwise we will be someone else. If we weren’t occupying the disability box, we would be occupying another one. I’m sure it pisses the categorisers off knowing that we purposely upset the hierarchy of categorisation and the row of tidy boxes.

Ever since humans began running around the planet, categorising things and putting them into nice tidy boxes, there are other human beings who through circumstance, accident, quirks of birth or sheer wilfulness, stubbornly refuse to live in the stifling confines of someone else’s idea of what, or who they are.

Disability is one of these boxes. It marks us as different. It comes with a negative connotation that implies we cannot connect with the world, and that we cannot experience everything it has to offer, because we are lacking a faculty: be it hearing, sight, intelligence, or movement. What’s worse, it further implies that we have nothing to offer.

We often fail to see the person behind the disability due to fear or ignorance. We only see the packaging and not much else, which is why Emmanuel Kelly’s performance on The X Factor 2011, was a challenge for the judges and the audience. Will they see a singer/ performer, or will they see a young man with missing limbs, rising stoically to the occassion?

But we are different. Damn it, we are! No amount of gnashing and pulling hair out is going to change the fact that we have missing limbs, sight, hearing, mental faculties, restricted movements and whatever else constitutes disability. Unfortunately, because we don’t fit the social ideal, we are allowed to fall by the way side.

Accessible Arts recognises this, and its modus operandi is to promote full inclusion, access and cultural opportunities in the arts for people with disabilities through advocacy, education and information. In short, to give the people who don’t fit into these boxes, a leg up, so that they too can explore and fulfil their potential.

Challenging perceptions is what Accessible Arts is promoting with its upcoming exhibition, Framing Gravity . Framing Gravity is the fifth in a series of exhibitions that began in 2006, and aimed at giving artists with a disability, the opportunity to show their work as professionals, on the professional stage.

That’s the easy part. The hard work is in convincing audiences to view the work beyond the patronising rut of disability.

Which is why you are being invited to the Framing Gravity, which runs from 21 October – 5 November 2011.

We want you to come with an open mind, ready to be surprised, and come away with the knowledge, and understanding, that it is quite OK, to not fit into a box.

Related Links:

Framing Gravity: Exhibition

Accessible Arts

Saturday exhibition opening: Re-framing Disability

Re-framing disability: portraits from the Royal College of Physicians

There is no X-factor in patronising judgement