Australia's Shame

I was in Townsville. I was staying at Jupiter’s Casino.  I was there for work. Jupiter’s had a special deal. If you stayed two nights it was only $128 a night. My room was overlooking the bay and the magnificent Magnetic Island. The Island in all its splendour filled the horizon from my hotel window. It is one of the perks of my job that I travel and see beautiful places like this. Thursday was a great day. For the first time ever I had sign language interpreters beamed up to my conference through Skype saving the organisers thousands of dollars. It went without a hitch. This simple way of delivering access for Deaf people was the result of five years of work. I should have been celebrating, and I did quietly, BUT I felt a great sense of shame. My celebrations were tempered by the fact that I am living in a country that treats people with a disability worse than most countries in the developed world. In fact in Australia more people with a disability live in poverty than 20 of 29 comparable countries.  Even the beauty of the awesome Magnetic Island cannot camouflage this ugly reality.

It struck me that this rich country, with its vast pool of natural resources and its rapidly increasing wealth is nearly LAST. This rich country has more people with a disability living in poverty than 20 other comparable countries that make up the OECD. It struck me that a large part of the reason that I have been working on online remote Interpreting for these several years is largely to make it cheaper because this rich country will not invest properly in services to make employment and education accessible for deaf people. It struck me that countries with comparable, and probably far less wealth, were investing in and providing for people with a disability far better than Australia.  This is an Australia that CAN afford it but simply will not cough up the required investment.

And the Guvner  General, Quentin Bryce, says we can fix it with an attitude change. Perhaps the Guv is right but the reality is that what is needed is that the Governments of Australia need to start recognising the real value of people with a disability. Under- valuing people with a disability is not unique to Australia. The under-valuing of people with a disability is something that David Hingsburger explores in his article, The devaluation those with disabilities.  This article was published at Canada.com .

Hingsburger is critical of Governments the world over that are obsessed with getting people with a disability off pensions and into the workforce. It is not so much that Hingsburger doesn’t want people with a disability to work it is more the fact that the debate to get the disabled off pensions and into work portrays the disabled as bludgers that are a draw on the public purse.

Hindsburger, who uses a wheelchair, tells a wonderful story of how he was attempting to wheel himself over a shag carpet. It was tough going and a colleague came up and asked if he would like a push. Hindsburger replied that he was ok, and that the workout would do him good. His colleague replied, “Well, it’s nice to meet one of you people that’s not simply lazy.” His colleague had thought he was paying Hindsburger a compliment. But in Hindsburger’s view he had slapped him across the face. Hindsburger observed, “His remark had risen me up from the “lazy scum” who don’t work. I took offense at his compliment.”

What Hindsburger’s story demonstrates is that society sees people with a disability as a drain on its resources. Look at Australia’s immigration policy. Any hint of a disability and people are refused entry. Why? Well because the view is that they will eat into Australia’s welfare and health dollar. Australia’s view is that people with a disability cost and don’t contribute. Australia’s view of disability is, “The less the better.”  Hence this is why the bulk of people with a disability who apply to come to Australia from other countries are refused entry. Australia’s Shame!

And Australia has norms for people with a disability. People with mental illness are dangerous and prone to violence or self- harm. If you happen to be a person with a mental illness who is neither violent nor causes self -harm then you are the exception, not the norm. Of course the truth is the complete opposite but this is the myth that the media perpetuates and Australia hangs on to.

We have norms for Deaf people in the Deaf sector too. This year Colin Allen was elected as President of the World Federation of the Deaf.  One of our CEOs wrote in their organisations newsletter congratulating Mr Allen. The CEO gushed about how she had had conversations with Mr Allen and was delighted to work with him. She described him as, “A very clever man.”

To me this is the ultimate insult to Deaf people. The President of the World Federation of the Deaf is CLEVER. Well of course he is. Do we hear Julia Gillard, PM of Australia described as, ”A very clever woman”??   Imagine welcoming Julia Gillard to the stage, “I would just like to welcome Julia Gillard, who is a very clever woman, to the stage.” It just wouldn’t happen. What the CEOs comment highlighted to me was that for the CEO to meet a highly intelligent, effective and successful deaf person was not the norm, it was an exception.  Perhaps I am over-reacting but the CEOs comment highlighted a perception in the CEO that Deaf people are generally not clever so we need to highlight the ones that are because it’s not NORMAL. This is very much like Hindsburger being separated from, “those other lazy scum”, as an exception rather than the norm. This is very common in Australia and, if Hindsburber’s story is anything to go by, the world over.

Recently I attended a conference on employment. At the conference they were talking about addressing the skills shortage in Australia. They were talking about apprenticeships and the need to encourage more young people to take up apprenticeships. If memory serves me right the target was 400 000 in the next five years or so. There was talk about people with a disability and Aboriginals being an integral part of these 400 000 placements. I was quite excited about this until I saw the targets. Of these 400 000 placements they wanted 1.5% of them to be people with a disability. For Aboriginals it was .44%. The speaker was waxing lyrical bout having achieved over the target in placing people with a disability.  They had achieved 2 %.

I was gobsmacked.  Australia is reliably quoted as having 20% of its population with a disability of some sort. Certainly in the younger groups, and this is where most apprenticeships are targeted, it would be slightly lower as it does not take into account the aging population who acquire disabilities as they age.  But 1.5% is a paltry percentage. It should be much higher and representative of the total number of people with a disability in Australia. If I was gobsmacked at the disability figure imagine how Aboriginal people would have felt at having only .44% of the total as their target. This is Australia’s Shame in that it refuses to acknowledge the true worth of people with a disability, (or indeed any minority group.) It is not for nothing that people with a disability are largely living in poverty. Australia simply refuses to acknowledge their worth and invest properly in them.

Graeme Innes, Disability Commissioner for the Australian Human Rights Commission, also spoke at this conference. Mr Innes is blind. He is a qualified lawyer and he spoke at length about his struggle to find employment when he graduated in law. For a period of time, because no one believed he could do the job, he had to work as a base grade clerk earning a pittance. What was his job?  Reading out winning lottery numbers to people that phoned in wanting to know which numbers had come up.  Mr Innes is particularly critical of the Australian Public Service and the number of people with a disability that work within the public service. Over a period of time the number has decreased rather than increased. Today the figure is around 3% – Australia’s Shame!

Mr Innes wants the Australian Public Service to increase this percentage drastically and proactively target people with a disability as part of the Australian Public Service workforce. Mr Innes wants to see AFFIRMITIVE ACTION. He believes, given the barriers that people with a disability face in getting employment in Australia, that if a person with a Disability shows that they are more than capable of doing the job they should be given the job over their able bodied colleagues. Why? Simply because the lack of opportunities for people with a disability means that they often simply do not have the same level of experience as able bodied applicants. The playing field needs to be evened.

And this brings us to our Deaf sector organisations. How many deaf people work for them? What is the percentage of our deaf sector organisations workforce that have deaf people at management level? What percentage of their workforce has a Deaf person at the helm? How many of our deaf sector organisations proactively seek out experienced and qualified deaf people to make up their workforce? How many want to lead the way to show DEAF people at the forefront? How many have had Deaf people working in the same job for many years with little opportunity or encouragement to advance?  Which ones overlooked Deaf people with years of experience in the Deaf sector and disability sector for applicants who were more academically qualified but with absolutely no background in deafness? Which organisation overlooked the Deaf Human Resource Manager with qualifications in Human Resources for a Human Resource manager with more experience when they could easily have employed the Deaf person and provided them with an opportunity to advance?  Which one has sacked an imminently qualified Deaf person simply because that person’s manager was intimidated by that person’s knowledge and background?  Worse, which Deaf people have been party to these decisions simply because they wanted to maintain their status quo? Sadly all of the questions asked above relate to real situations within our Deaf sector organisations.  Australia’s Shame indeed!

Australia’s Shame! For a rich country, an advanced country and a country that prides itself on a fair go it simply isn’t good enough!  Australia is near bottom of the league for Disability access and opportunities.  Our Deaf sector organisations are down their too, if not even further behind.

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Stories From My Past # 2 – Gary Kerridge

This week Professor Graham Clark, inventor of the cochlear Implant, won a prestigious medical award. Professor Clarke was very forthcoming about the positives and negatives of the cochlear implant. He spoke about his desire to develop the cochlear implant further so that it was providing Hi Fidelity sound. Clark is well aware of the Implant’s limitations. He spoke how it was effective for picking up speech and in environments that did not have a lot of background noise. He explained that the device could be limited when there was a lot of background noise. He particularly wanted to develop the cochlear implant further so that implantee’s could enjoy music. He had received feedback from a patient that the cochlear implant was not great for music. This made me think back to what is now four decades of deafness. (The full article can be found at – http://www.news.com.au/breaking-news/aussie-inventor-professor-graeme-clark-wins-top-honour-for-creation-of-bionic-ear/story-e6frfku0-1226201643956#ixzz1eU0wV3Vk )

The catalyst to my deafness is actually quite comical. At age 18 months I was admitted to hospital for, as the medical report says, “a routine circumcision” – Of all things. On the way to the hospital my mother noted a small rash behind my ear. She brought this to the attention of the Doctor who said it was nothing to worry about. After the circumcision I apparently came down with measles, which is what my mother thinks the rash was.

Whether it is related or not, I don’t know, but my mother believes the circumcision, coupled with the measles, led to my immune system breaking down. What did happen was that after the circumcision I came down with a raging temperature and this necessitated ice, flannels, and whatever was at hand to bring the temperature down. I was to be kept in overnight but remained in hospital for three months after that. I managed to catch whatever was going around the ward. I ended up with pneumonia and I was placed in an iron lung.  My elbow became infected with Osteomyelitis.  I caught chicken pox. Somewhere along the line my ears began to discharge fluid and were treated with Sofadrex. And all this from a “Routine Circumcision” I would hate to think what might have happened if it had been  a ”Circumcision with Complications.”

At one stage doctors feared for my life but I pulled through. The lasting effect of the experience seemed to be a series of chronic ear infections. This involved a smelly discharge that was treated with Sofadrex. Initially my hearing was not impacted. Around the age of 5 or so my parents noticed I said “what” too often for their liking and I was referred to Dr Jay at the Royal Children’s Hospital in Adelaide.

I remember Dr Jay as a jolly fellow. His response was to treat me with Sofadrex some more and monitor me. My hearing loss was insignificant and the strategy seemed to be to keep the ear infections at bay. At some point poor old Dr Jay passed away and was replaced by Dr Rice who I remember as incredibly hairy. He had great bushy eyebrows and enormously hairy fingers.

Now Dr Jay and Dr Rice were top doctors in their field. Despite their best efforts my hearing began to drop rapidly.  Dr Rice was absolutely flummoxed. He tried bone surgery and he tried grommets but despite his best efforts I got deafer and deafer. Slowly, mind you, but deafer none the less.

My spiral, no that’s negative, rather my journey into deafness was marked by constant visits to the Doctor. Sometimes for second opinions but the response was always the same. I was losing my hearing but no one knew why. There was even a suggestion that my hearing loss was my fault in that it was psychological and I was sent to a psychiatrist for assessment. My overriding memory of that was being placed in a room with kids who had severe behavioural issues, that was an experience indeed.

Years of seeking answers and cures were futile and by my teens I was profoundly deaf. My parents tried everything, even herbal medicine. I remember having to place some herbal drug on the tip of my tongue, roll my tongue under and hold it for six seconds and then swallow. Quite why, I have no idea. Desperate circumstances, desperate measures.

My mother swears that my hearing loss was caused by the ear drops.  Something Doctors at the time refused to consider. She may well be onto something because there is something that is called Ototoxicity which is apparently a reaction to antibiotic ear drops that can cause deafness. As far as I know Sofadrex was an antibiotic. This risk is apparently greater when you have a burst eardrum and mine was bursting more often than a balloon in a field of thorn bushes. Years ago there was only one type of ear drop and these ear drops were all similar to Sofadrex. Today, apparently, there is an alternative in the form of aminoglycosides, which are safer. Maybe I should sue! Lots of people have for lots less damage.  Any lawyers out there who want to take up my case give me a buzz.

My parents tried to save my hearing but ultimately it all failed and I became deaf. People who are later deafened never really become fully deaf. They always have a memory of sound. I remember sound well. You remember the most ridiculous things. Like waking in the middle of the night because one family member went to the toilet and you heard the flush. You remember being kept awake by the constant whirring noise of the old Westinghouse Fridge. You remember strains of stupid but classic television advertisements jingles such as Louie the fly, Louie the fly straight from rubbish … I particularly remember staying awake at night and listening to Number 96 because my parents wouldn’t let me watch it. Dorrie Evans and why she wasn’t told was a big part of playground conversations at school which suggests that I was not the only one.

But some of the memories are more poignant. Like the sparrows and their twittering outside your window in the mornings. The pitter pattering of rain on the roof.   Or Listening to commentary on the television about the first moon landing while eating dinner in the kitchen. Or running into goal to score your first ever goal with your mother screaming in the background SHOOOOOOOOOOOOOOOTTTTTTT!  And then wheeling round in excitement to see her doing a ridiculous sort of star dance as she jumped around in celebration. You always remain hearing.

And you miss things. You miss the banter on the radio and the hearing of new songs. I remember Let It Be and Eagle Rock. I remember my father bringing home a record player, a huge RCA stereo, and playing David Bowie. The first David Bowie song I ever heard was Uncle Arthur … “Uncle Arthur likes his mummy, Uncle Arthur still reads comics, Uncle Arthur follows Batman…” I remember listening to the great British Football Commentator, Brian Moore from The Big Match fame, “Moore to Peters, Peters takes it up the right, Robson, He shoots, GOOOOOAAALLLLLLLLL, OH WHAT A GOOOOAAALLL ….”  Or that immortal The Big Match theme tune da da da da d d da da da These memories of hearing never leave you and yes you miss them, even 40 years later.

But would I change things? Well probably not. I have made a life out of deafness and disability. Made many friends and experienced things I would never have experienced if I had remained hearing. I met my wife through deaf people. I have met Prime Ministers and flown to places all over the globe because of my deafness. It has been a good life. It is a truism to say that deafness has made me who I am and as much as I miss being hearing I am glad for my deafness.

BUT, and there is always a but, would I become hearing again given the opportunity? I have to say yes. Give me a pill and cure me I would take that tomorrow. If Mr Clark succeeds in developing a Cochlear Implant with Hi Fidelity sound would I have one? Absolutely I would. You see I am hearing by nature and culture. I miss it and I would have it back in a shot. Is that double standards? Perhaps or maybe it’s a case of,  ”You can take the hearing from the man but you can’t take hearing out of the man.” It’s just who I am. And only a Deaf person will truly understand that!

 

 

Stories from My Past – Gary Kerridge

There once was a time when I had to fend for myself. This was particularly so when I started studying Social Work at the University of South Australia. On acceptance to the University I met with Dick, who was the guy who looked after people with a disability. He asked what he could do to help. I explained that a signer would be good to translate lectures. (Interpreters, what were they?) He said that wasn’t possible but that he could organise a buddy to take notes for me.  Being young and meek I accepted this as the way. He promised he would organise it for me.

I commenced lectures and after three days there were no note-takers. Several visits to Dick’s office were fruitless as he was rarely there. In the end I had to take things into my own hands. I got out the front one lecture and explained that I was deaf and needed assistance. Several people volunteered. Some were good others not quite so. I often would have to chase them for their notes. Access to group discussions were hit and miss. To put it mildly it was not a pleasant experience.

Through the course of my study things did improve marginally. They started to pay the note-takers. This improved the quality of the notes but still did not give me access to class discussions and peer learning. To keep up I had to read extensively. At one stage Dick’s secretary was receiving tapes of my lectures and transcribing them for me. The idea was that I would get full access to the information. The problem was she did this on top of her other work. Notes might be up to a week behind. I was always behind.

Things came to a head when I was failed for Legal Studies. Not because I failed to do the work or understand the topic, but because I did not hear instructions as to when papers were to be handed in. All I had to go by was the course outline which said “Papers Handed Back November 25th” which I took to mean when the paper was due. The paper had been due one month before that and the lecturer had clarified this. Everyone knew except me. “Handed back” had meant to mean when papers would be returned to students marked.  I actually went to the lecturer’s house to plead my case but he refused to accept my story and promptly failed me.

My then girlfriend’s mother was livid. She said to me that I had to go visit my MP and tell him what had happened.  I wasn’t sure what the MP could do and I was almost past caring. She even found out who it was and called to make an appointment for me. I was not sure what the MP would do but thought I may as well meet him, I had nothing to lose. So I met the MP who promptly set me up with a meeting with recently retired South Australian Premier, Mike Rann. Mr Rann was the then Education Minister.

If you have never met a Government Minister in their office it is an experience in itself. The South Australian Parliament House is a rabbit’s warren. My MP met me at the front of parliament house and led me through the maze of corridors to Mr Rann’s office and then went on his merry way, I never saw him again.

Of course Ministers are very busy. I had to wait some 40 minutes to see Mr Rann. Thankfully he was quite easy to lip-read because I had no interpreter. There were three people taking notes, which I found quite intimidating. Presumably this was to make sure I did not misquote Mr Rann at a later date. Anyway Mr Rann was very attentive, in fact overly so. He stared, never loosing eye contact. His eyes seemed to bulge out of their sockets and he leaned well forward over his desk and a half smile never left his face. But to his credit he listened.

I told my story of woe at University. I explained how I had started and how I had been forced to organise my own note takers. I explained the different strategies that we had tried and my frustrations at not being able to fully participate in my studies because of lack of access to discussions and peer learning. I may have explained other difficulties like access to videos and audio and what not. Mr Rann just listened and nodded.

I came to the end of my tale of woe. Mr Rann leaned back in his chair and asked one question. “How can we fix this?” I was on the spot. I had waffled on but offered no solutions. I said, “A signer would help a lot.” Mr Rann was silent for a time and then he said, “Here is what you should do.”

And his advise was to write a letter. “Write a letter to the Head of Social work explaining all this and what you want.”,  said Mr Rann. “The Head of Social Work”

Explained Mr Rann, “Is also the Disability Advisor to the Premier.” Mr Rann instructed me to tell the Head of Social Work that I had met with him. “ See what happens from their” said Mr Rann, “And call me if you are not satisfied with the outcome.” And that was it.

I did as Mr Rann instructed. Two things happened. Firstly the next year the University started to provide sign language interpreters for deaf students and secondly my failure at legal studies was lifted. I was instructed to enrol for legal studies again and just hand in all the assignments from the previous year for marking again. God did I feel empowered.

Now it would be remiss of me to claim credit for all the introduction of sign language interpreting at University in South Australia. At the time there were several Deaf students who were fighting the same battle. Shane was studying at the University of South Australia and had had access to sign language interpreters BUT his employer had paid for them. Paul was fighting a similar battle at the Flinders University. Annabel had just enrolled in recreation. Several other deaf students had enrolled and withdrawn from study from lack of access. It was a combination of many things, people and circumstances that brought things to a head. I was just one cog in the wheel.

But I was one of them and I played my part. I played my part by constantly drawing attention to my circumstances, never giving up and hammering away. And I am proud of it, very much so. Now when students enrol at University in South Australia and get access to interpreters they can look back at the work that I, and my fellow deaf students, put in and the battles that we fought to ensure that we got a fair go. They all benefit. I guess that is our legacy.

I write this with a lump in my throat because they were honestly very difficult times. Difficult but inspiring times and it is these battles that made me who I am today. This story came back to me as I analysed my recent battle to get interpreters at the National Disability Employment Summit. I look at my change in attitude. Back then I would just accept whatever was offered now I DEMAND access as my right. I use my contacts and my skills, honed over two decades, to make sure I get full access.

The times have changed and I am proud to have played my part. The battles are not over there is much that needs to change and we must continue the fight. But never forget those that have gone before you. The access that people with a disability and deaf people get today has been built largely on the shoulders of others, the pioneers I call them. Honour them by keeping up the good fight.

Robbie the Rat from Complainark

Picture is of a cute rat seemingly chewing on a tiny hula hoop

Robbie was the scourge of the country of Complainark. Robbie knew how to break the law in Complainark. In Complainark the law only worked if people complained. The people of Complainark don’t like complaining. Complaining is depressing and it often means you have to dob people in. In Complainark dobbing people in was bad form. The Government had tried to lessen the stigma of dobbing in but numerous campaigns in the media had not hit their target. Complaining and dobbing meant you were miserable and a whinger and people just did not want these labels. So, rather than complain, the people of Complainark remained largely silent.

Robbie knew this and he abused the system at will. He knew there was a risk that one day someone might actually complain about him BUT he also knew that there were so many shades of grey in the law that the likelihood of him being penalised was next to nothing. The risk was worth it in his view. So Robbie did just about anything he damn well pleased.

Robbie would walk into a shop. See something he liked and just take it. Of course stealing was against the law and frowned upon but for the law to work in Robbie’s country someone had to first complain about Robbie stealing. So Robbie would walk into an electrical shop, see a laptop that he liked and walk out with it.

Of course people from the shop would confront Robbie. “That’s not yours”, they would say and ask him to put it back. Robbie would laugh at them and just walk away. The shop owners would ring the police and ask them to tell Robbie to give back whatever it was that was stolen. The police would do nothing. Instead they would direct whoever it was that complained to their website. The police would instruct them to go to the complaints section and document their complaint about Robbie. The complainee needed to document in detail what had happened and why they had been disadvantaged. Of course it took a fair amount of time for their complaint to get through the system. In the meantime Robbie was at home enjoying ‘his’ new lap top.  Strange? It certainly was, but that was the law in Complainark.

After a period of time, sometimes two weeks, sometimes a month and sometimes longer the police would contact the person that had made the complaint.  They would explain the process for having their complaint heard. First there would be conciliation. The person making the complaint, the shop owner or whoever, had to meet with the police and Robbie and explain why they think it was wrong that Robbie has stolen the laptop or whatever it was that Robbie had stolen. They had to explain why they thought they had been disadvantaged and what they thought should happen. Of course the answer was usually very simple, Robbie had to give back whatever he had stolen and be punished for it.

BUT! The law was funny. You see Robbie could claim Unjustifiable Hardship. Unjustifiable Hardship was a part of the law that stated that if a person didn’t have very much money they could claim hardship if whatever they had stolen was taken away from them. Now Robbie did not work, he had very little money and he would simply claim that by taking the laptop away he would be severely disadvantaged. How would he apply for jobs without the laptop? How would he feed himself if he had to BUY one?

The person making the complaint usually would claim that it was unfair that Robbie was able to do as he pleased and that he should go to jail. Of course Robbie would point out that if he went to jail there was no one to look after his children, four dogs two cats and budgie, (the animals all which had been stolen), and that apart from being in financial hardship he would suffer untold personal hardship as well.

Under the Unjustifiable Hardship clause Robbie won every time. In an effort to counter this, the person making the complaint would try another avenue of the law. They would claim that it was Reasonable for them to ask for the laptop back because it was theirs in the first place and that they had paid for it. Unfortunately, under the law, Reasonable had not been given a clear definition. In other words what was Reasonable was not clearly prescribed in the law. Robbie would claim that it was not reasonable to give the laptop back because, in his view, they had enough laptops and they would not miss the one he had taken. But, you see, under this weird law Robbie and whoever made the complaint had to meet and try to work out what was considered reasonable. Robbie simply would refuse to budge.

So the police would try to get Robbie and the person making the complaint to agree on what should happen. That the answer was as simple as Robbie having to give the laptop back was not something that the law had considered. Conciliation was about the two parties coming to an agreement on the course of action that should be taken. Robbie would simply never agree. The laws of Complainark were Robbie’s friends.

Now after the conciliation process had failed the police would advise the person making the complaint that they were sorry but resolution could not be found. They would advise that the only course of action for them to take was to go to court. They would have to get a good lawyer and then argue their case in the courts.

The problem was that court was an expensive business. The lawyer’s fees could come into many thousands of dollars. Court fees likewise were in thousands of dollars. What is worse, if they lost, they would have to pay Robbie’s lawyer and court fees as well. The fact that injustice had happened was of no consequence, the onus was on the person making the complaint to take the risk of losing many thousands of dollars, which might mean their house, and show that Robbie had broken the law.

The lap top was worth just over a thousand dollars. The risk of losing everything usually meant that the person making the complaint, even though they were entirely in the right, simply could not take the risk and they would usually drop their complaint like a hot cake. Robbie knew this and he went away laughing every time.

Robbie knew that there were cases where the person making the complaint had gone to court and won. But he also knew that the odds of them doing so were very slim. He knew that the system was weighted in his favour and he abused the system to the hilt. Apart from that Robbie knew that people hated complaining and rarely did. He knew he was wrong BUT hell he didn’t write the laws of Complainark, it wasn’t his problem.

HAHAHAHAHAHAHAHA what a strange country Complainark is. Perhaps Complainark  is the figment of some kind of weird dream. Well if you are disabled then try to claim discrimination under Australia’s disability discrimination law because that is exactly how the law is written. Fair? Reasonable?  PBBBBFFFFFFTTTTTT!!!!!

 

Dear Nova – Is the Writing on the Screen – An Open Letter to Nova Cinemas by Elena Down.

Elena Down is yet another not impressed with Captiview – Will anyone ever listen to the deaf? Will Nova respond?

Dear Nova

I have had a Privileges Card with you for a year, and am letting you know that I am alarmed at the declining number of open captioned movies you show.

I have been a patron of Nova for decades (since my uni days). I used to watch only foreign films as these were the only films with captions.
I am an arthouse movie buff and enjoy accessing my rights to participate in culture and leisure on an equal basis with others.

I applauded Nova’s respect for equality of access and its leadership in showing films with open captions.
Indeed my recent viewing of “Jane Eyre” at your cinema with open captions (at which there were probably some 30 other people) was one of the most enjoyable afternoons I had in a long while- the film was lovely, and the captions themselves were sensitively positioned on the screen and not intrusive at all- a stunning example of good accessible cinema! Well done!

My experience of the new ‘Captiview’ device at Forrest Hill cinema complex by comparison was appalling – (like reading a book in a cinema trying to toggle between short and long perspective was a really uncomfortable experience indeed) My experience with you and open captioned films by comparison was a delight I keenly extolled on facebook!

I don’t feel that I get value from my Nova card and am not sure whether I should renew – its a ‘privilege’ to even find an English language film that has open captions now…

Can you please explain why the number of movies with open captions is falling?  In the current environment of increasing respect for human rights, I would expect that the number of accessible films will increase, not decrease!

Please, please, please show more movies with open captions, and continue to show respect to the deaf and hearing impaired community who desperately love your cinema and seeing films there. I have had (non-Deaf) friends say that they would like to come with me to open captioned films so that we can all enjoy them, and they can show their support to cinemas who ‘do the right thing’.

I would also like to hear from you what accessible films over the next 2 weeks are available – as I can’t seem to find these in the newspaper or on your website.

Thanks for your assistance and early response,

Elena Down BA LLB (Hons).

An Advocates Guide

American writer William Faulkner (1897-1962) once said of advocacy, “Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth. ” In Australian society there is much injustice whether it is towards Aboriginals, Gay/Lesbian communities, the disabled or us deaf people,  injustice is everywhere.  Apart from making the majority of us very angry this injustice keeps us on our toes. For people like me injustice is part of the work we do, namely advocacy.

This year I have been called to advocate on several occasions and, without blowing my own trumpet too much, I have achieved positive outcomes. In my case people often call me because events refuse to provide Auslan interpreters. First it was the careers expo who  refused and then decided to provide interpreters after receiving an email CCd to several universities and TAFE personnel who had stalls at the expo. Then it was the university that wouldn’t provide interpreters at its graduation ceremony and this took a simple email to the equity manager who was up in arms at the refusal and ensured access was provided. Then it was the more recent national employment conference that was documented in Bad to The Bone.

All in all it has been quite a successful year. On the downside it is appalling that in this day and age that this is still occurring. Australia has a very weak Disability Discrimination law and it requires advocates to remain wary and constantly alert. My current campaign, a personal one, is to get Austar to improve its captioning quality. I have had some success here too where Austar are doing an internal investigation into technical problems with their captioning after at first trying to fob me off with several public relations emails.

But advocacy is not just complaining about lack of access and demanding access. It is a skill and a very refined one at that, even if part of the delicate diplomacy involves banging people over the head with a proverbial sledge hammer. Said  scientist  Benjanim Rush (1745-1813), Controversy is only dreaded by the advocates of error. “ There is no right or wrong way to advocate, rather advocacy is a combination of many approaches all essential to positive outcomes. However, there are certain things that an advocate can use or be aware of. This article will outline a few of these, some conventional others less so.

Know Your Rights and the Law

This would seem to be a no brainer. But Australia’s disability law is such a finicky thing as to be almost useless. It is not quite useless so it is essential that a good advocate knows how it operates. A good advocate needs to know what “consultation” really means under the law and what can and cannot be construed as “unjustifiable hardship” Likewise the good advocate understands what is a “reasonable accommodation” and how establishing these “reasonable accommodations” is intrinsically linked with doing the ”consultation” properly. A good advocate can recognise when “reasonable accommodations” are likely to be denied because of “unjustifiable hardship” Confused? Of course you are. But here lies the rub. You can bet everybody, even the best of lawyers, doesn’t know either because our DDA is so wishy-washy as to not even properly prescribe what any of these things are. You need to know when to complain to the Australia Human Rights commission too. And this should only happen when you are done complaining to the organisation that you are complaining about. In short stay well clear of the DDA unless you REALLY come to a dead end. It’s almost useless.

Beware the Patroniser

Because you are disabled, or an advocate for the disabled you are automatically a figure of sympathy. Beware these lines, and I have taken these verbatim from some of the correspondence I have had in recent advocacy,

“We fully understand your frustration.”

“I am sure you can appreciate ….”

“We take your concerns very seriously”

“We are so sorry you have found our service less than satisfactory”

“Let me assure you …”

“We hope you continue to enjoy ..”

“Perhaps a friend can call us if you experience further difficulty….”

Utterances like these indicate you are about to be fobbed off. They can show that the service provider has acknowledged your complaint but they are hoping that by being sweet and saintly that you will go away.  Imagine them typing their response with a fake smile. The waiter smile we call it.

Don’t go away. Keep them to task.

Ask Questions Demand Answers

A mistake that many advocates make is that they just complain. They might say “I couldn’t get on the bus it is not fair!” or “I am angry because there were no captions.” In short they have a little rant.

Having a rant is fine, it cleanses the soul. BUT if all you do is rant nothing changes. My campaign to get Austar to take captioning seriously is a good example. I complained that captions dropped out, doubled up, were not there when advertised and were there when not advertised. I let them know I was really frustrated and ranted that I thought Austar were not taking the deaf seriously.

BUT I also demanded some answers. In fact a good advocate will always summarise at the end of any complaint the answers that they are seeking. In the case of Austar there were three – 1) What will Austar do to fix the problems with poor captioning quality? 2) What will they do to ensure that they advertise captions accurately?  3) Given the lack of access will they consider subsidising deaf people for their lack of access? I do not yet have these answers BUT I have at least been promised them. It’s a good idea to ask for a time line for their response too. In this case it is 14 days.

I followed a similar strategy when I campaigned about the Employment Summit’s refusal to provide interpreting. It was slightly different in this case. In this case I simply outlined that I would not accept the non-provision of interpreting nor would I accept the cost being borne by any other source and reminded them of their obligations under the DDA. I ended with two simple and blunt question, “Given the above information will you now provide interpreters? If not why not?”

The questions that are asked must be explicit. By all means complain and rant. Letting people know that decisions that are being made are causing personal angst and frustration shows that it is something that you feel strongly about. But always ask pointed questions and demand answers.

Often in initial responses these questions will be ignored. Refer back to these questions and demand answers. In the case of Austar they pointedly refused to answer any questions. Austar were particularly annoying because they would use my complaint as a means to advertise themselves. “We see that you love sports, did you know the upcoming cricket will be live captioned?” And despite ignoring all my questions claimed, “We take the needs of the hearing impaired very seriously.” And sickly sweet they would implore me at the end of each correspondence to “Enjoy your Austar.” With the latter they received a curt reply that, ”I and many deaf Australians would love to enjoy Austar but the lack of captioning means for the most part we cannot.”  It took several emails directing them back to the questions before they agreed to investigate. Patience is a virtue.

Don’t Be Bought!

One of the many appalling tactics of service providers like Austar, when confronted, is that they will try to buy you off. This is common. For example a good friend of mine, some years ago, went to the cinema to watch a captioned movie only to find there were no captions as advertised. Naturally he complained and he was offered free tickets and reminded, amazingly, “Not to worry because the DVD, when released most likely will have captions.”  I believe he returned the ticket and asked whether they would reimburse his travel costs and time wasted.

In the case of Austar they offered me credit for lack of access for “one week” and then also free access to Fox Sports, “for my trouble.” A colleague got sent a DVD by Channel Nine for a show where captions dropped out. The intent of these freebies is very rarely pure. It is often a cynical attempt to buy you off and hope that you will go away.

The aim of advocacy is to make change. Freebies do not make change. DO NOT be bought off. Politely return freebies and remind providers that such freebies do not solve the issues. Be diligent and keep them to task.

Even when you have a win don’t let it end there. For example with the Employment Summit, after first trying to buy me off with a refund, they finally agreed to provide interpreters. My boss followed this up with a thank you to the organisers and asked them to guarantee that at future events that they organise that they would ensure access needs were met. She received a reply that this would indeed be the case. (this email has been safely stored away for future reference.) The aim is sustainable change wherever possible.

Don’t Shirk Controversy (But use it wisely)

Advocacy is not for the faint hearted. The advocate has to put themselves out there. Advocacy is confronting and often requires conflict.  It sometimes needs controversy and this controversy needs to be used wisely or it can backfire.

Remember that with all controversy there is risk. When using controversy use it strategically. For example, twice this year I emailed about lack of interpreter access with a CC to key stakeholders involved in the event. This was not done without a great deal of thought. In both cases time was of essence. A decision needed to be made quickly. In both cases the events were creating great profit for the organisers and where interpreting access was not something that they could claim was “unjustifiable hardship

It was hugely risky to CC other stakeholders to the initial complaint and demand for interpreting. However, in the first instance several requests for access had been denied before I had been approached for assistance. Organising the interpreters needed to happen and attendees needed an answer quickly before committing fees to attend –in short drastic action was needed. In the latter interpreting was at first promised and then withdrawn very close to the conference date. It was decided to fight fire with fire in each case. Before embarking on such tactics consider the consequences very carefully indeed. It can backfire.

The other avenue that creates controversy is the media. There is a tendency sometimes to want to get the media involved to embarrass people into action. Protests and rallies are often deigned for media attention. It can work but before doing this one needs to ensure that they have entered a dialogue with whatever organisation it is they are not happy with. All records of the dialogue need to be kept and one needs to be able to demonstrate that they have made a concerted effort to get an outcome but despite best efforts nothing eventuated. The records are the evidence so keep all correspondence. Record every phone call made, when and where and what was agreed or denied.

Only when it is clear that there can be no meeting of minds should a media campaign be used. There can be nothing more counter-productive than to go to the media and when confronted by the media the service provider says, “It’s the first we have heard of it.”

Do not fear controversy nor the risk that goes with it but at the same time use them both wisely.

Be Accountable to who you are Representing

Accountability is often a dirty word in advocacy. Advocacy is not just individuals making complaints but often it is groups advocating on behalf of others. An example of this is the campaign for captioning in cinemas. Often these advocacy groups are shrouded in secrecy.

An advocacy group is a group of people that represent OTHERS. Because they are representing OTHERS they need to ensure that they are representing what these OTHERS want. This means a proper period of consultancy needs to happen with the OTHERS. A group of five to six should NEVER be as arrogant as to decide that they KNOW BEST for everyone.

Consultancy is a powerful tool in advocacy. If a group can show that they have spoken with a wide cross section of the people that they represent they have evidence to support what they are advocating for. An individual should never assume that what they think is what is best for all. A good example of this is Captiview, where a system was introduced without seeking feedback of its effectiveness from the people that will use it. A band of merry advocates decided it was a good thing DESPITE a lone voice saying trial it first. How right he was proven to be. CONSULT CONSULT CONSULT.

As obvious as this might seem, consultancy rarely happens. A gang of five or six who claim a mandate will make decisions on behalf of OTHERS with little or no consultancy. Yes consultancy is hard work BUT IT IS ESSENTIAL to any advocacy campaign that impacts on OTHERS.

There are many advocacy groups. They all operate differently. If you find yourself a member of an advocacy group be wary of any needs for confidentiality within these groups particularly those that that withhold information from the OTHERS. The OTHERS should be kept fully informed wherever possible. There may be times when confidentiality is needed in situations where negotiations are sensitive or when individuals are involved but these instances are and should be very rare.

Beware of individuals within advocacy groups that posture for power to represent the group in negotiations. Who is selected needs to be done openly and on the record. Beware of people within advocacy groups who have conflicts of interest, who seek to promote their business and make profits from the outcomes. Most of all beware the benevolent used car sale type people who exclaim “Have I ever let you down!”

In short the good advocate is genuinely OPEN, accountable with nothing to hide and is more interested in the people they are representing than themselves.

 And Lastly –Know Thy Enemy

Don’t make the mistake to think that all advocacy is about them and us. Sometimes access is not provided simply because a person or organisation is not aware of their obligations. It pays to research.

Get online and find out a little of the organisation that is denying access. See if you can find out their history, who they target, their financial turnover and their product. Having this information at hand can help immensely.

For example in dealing with Austar one can find out online that they have been granted an exemption from having to provide full captioning and also how much captioning they must provide. What this means is that when one campaigns to them they know what they can and cannot ask for.  Austar is not exempt to providing quality captioning and for this reason as part of my campaign I focused on the quality aspect. In fact, if a certain percentage of their captioning is not accessible, one can argue that they are not meeting quotas as agreed under their exemption agreement with ASTRA.

Know thy enemy and also thy friends. Particularly thy friends because the more support that you can get the better.

 

MOST OF ALL A GOOD ADVOCATE SHOULD REMEMBER THIS;

“A right delayed is a right denied”. – Martin Luther King, Jr.

The Danger of Secrets!

SECRETS … We all have them. There are some things we just do not want other people to know. Secrets come in all shapes and sizes. Some are personal ones. Perhaps you’re an adult and you still like to cuddle your teddy bear. No one needs to know, it harms no one. Then there are other more dangerous secrets that are also personal.  We have all heard about the sneaky spouse who has a lover and who goes to great lengths to hide the fact from their partner and even their friends.  Eventually secrets like these, like an infected sore, fester and cause a great deal of pain for all concerned.  Edgar Watson Howe, American journalist and author, probably was not far from the truth when he said, The man who can keep a secret may be wise, but he is not half as wise as the man with no secrets to keep

The problem with secrets is that they create mistrust. To utter, “I can’t tell you, it’s a secret”, is to create instant paranoia. The feeling of being left out or excluded from information will instantly send a person’s mind into overdrive. “They are talking about me” -”What have I done wrong?” –  “Someone is dying and they don’t want me to know”. The human mind is programmed to think the worst. Probably this is an instinctive response from primitive times. The problem is this instinct creates a fight or flight mentality. The individual feels at risk and they can become either aggressive or withdrawn – It is all about self-preservation.  Secrets are, more often than not, minor but there are few things in the world that will make people more defensive than secrets.

The problem is that when there is a need to keep secrets often it is because the individual or organisation is up to no good.  It is often that they have an agenda and they don’t want anyone or anything to stop them achieving their agenda. When people are willing to keep secrets about their agenda they often are willing to lie or even kill rather than have their quest interrupted.

Donna Cavanagh in her essay “The Danger of Secrets – Hiroshima and the Atomic Bomb” (August 2011, http://thesop.org/story/20110806/the-danger-of-secrets-hiroshima-and-the-atomic-bomb.html), perceptively describes the danger of secrets, particularly political ones.  She highlights the Catholic Church and its cover up of sexual abuse of children over many years. Says Cavanagh, “Think of how many less molestation victims there would have been if one priest, bishop, cardinal or pope had the balls to come forward and tell the truth about what had been going on for so long. “

Cavanagh poses the question of what might have happened if the American Government had told the true story of the Atomic Bombs that they dropped on Japan. The Government chose for several decades to hide the videos of the suffering and disfigurement of the victims of the bombs. They also hid the effects that it had on American Service Men who were exposed to the horrors.  They kept this information secret and hid behind rhetoric of self-defence and the threat of Russia. Says Cavanagh, “ If the graphic information about the Japan bombs were released, and we saw what truly happened there, maybe nuclear arms would not have been so widely accepted among Americans. Maybe we would have insisted that the money that went into nuclear weapons go into other issues like stopping hunger or developing an alternative fuel that would have allowed us to tell the Middle East to go to hell.”  But the American Government had an agenda, this secret would have derailed it. The Government clearly thought it was for the greater good but what right do a band of a few men and women have to decide this on our behalf knowing full well how we would all react if we knew the truth.

When people keep secrets because they THINK THEY KNOW BETTER we are in trouble. Recently Deaf Children Australia sold land at great profit. The sale is apparently conditional and dependent on the Government agreeing to release a Caveat that is currently placed on the sale of the land. This Caveat, it is believed, prohibits the sale of the land and states that the land is to be used for the education of deaf children. The Caveat has been a great source of frustration to Deaf Children Australia because, essentially, it owns the land where the current Victorian College of the Deaf exists. Despite owning this vast block of prime real estate it is virtually of no commercial value because the Government Caveat prevents its sale.

Deaf Children Australia resides in a very old Bluestone Building. It requires constant and costly maintenance. Deaf Children Australia, rightly are trying to free assets so that they  can look after the building and ensure it does not fall down around their ears. The motive for the sale of the land is sound. The problem, arguably, is that parts of the process of the sale were cloak and dagger.

It was no secret that sale of the land was under consideration. Indeed Deaf children Australia had a number of forums to explain why the land was under consideration of sale. These were open forums for anyone to attend. So Deaf Children Australia is to be commended for their efforts to communicate elements of the sale to the Deaf Community.

BUT this communication came about when clearly the sale of the land was well progressed. It came about because the Victorian College of the Deaf voiced its opposition to the sale. They became quite public. They used the media and spread rumours of the sale of the land among the Deaf community. The Deaf community seeing that its heritage was under threat became quite vocal and concerned.  The Victorian College of the Deaf even went as far as to place NOT FOR SALE signs on the FOR SALE signs that were erected to advertise the sale of the land.

The problem is that Deaf Children Australia, rather than communicating the sale of the land to the Deaf community from the outset, only did so once the Victorian College of the Deaf began to voice its opposition. The communication, seemingly, only came about as a form of DAMAGE CONTROL rather than a genuine desire to communicate the sale of the land to the Deaf community. It is a little like the Catholic Church that only owned up to the sexual abuse of children by some of its priests when stories of the abuse became public.

Of course the sale of the Deaf Children Australia land did not have such tragic consequences as the sexual abuse of children by rogue Priests of the Catholic Church BUT a lot of heartache could have been avoided IF the Catholic Church had owned up to the problems immediately. Likewise Deaf Children Australia should have involved the Deaf community in the sale of the land from the onset and not only when DAMAGE CONTROL was necessary.

Kyle Miers, in a video media release to explain the sale of the land to the Deaf community, admitted that when negotiations for the sale of the land were happening, confidentiality was a condition. But WHY did this need to be the case? I can understand the buyer not wanting to disclose how much they were willing to pay because it could lead to other interested parties out bidding them. BUT information about what was intended to be done with the land by the buyer SHOULD have been communicated to the Deaf community. If Deaf Children Australia can release videos after the sale, then why could they not have released regular updates from start to finish? The need for confidentiality does not hack it. Deaf Children Australia is entrusted with a vital part of the Deaf community’s heritage yet communication only happened when it became clear that damage control was necessary. The secrecy served only to create mistrust and suspicion. Like the American Government and the Atomic Bomb Deaf Children Australia told the Deaf Community what they thought they NEEDED to know. Commercial interest came first, the Deaf communities needs and views were very much secondary. What was the consequence?  Clearly the consequence is mistrust and a very angry Deaf community.

Currently there is a campaign going on to throw out the new caption system that cinemas want to introduce, Captiview.  Many Deaf and hearing impaired people have voiced displeasure with the system and asked for the Captiview  roll-out to be ceased and a new system be introduced. Consensus seems to be that research and trialling is needed. The research and trials must involve Deaf and hearing impaired customers in selecting suitable technology. Under nocircumstances should any technology be introduced without consumer input.

It’s no secret what Deaf and hearing impaired people want. It’s no secret that feedback on Captiview is that it is rubbish and the Deaf community and many hearing impaired people want it gone. But what is secret is what is going on behind closed doors to address our feedback and needs. Well if the Deaf Children Australia land sale saga is anything to go by secrecy serves no purpose other than to put Deaf and hearing impaired consumers, the very people that matter, offside.

Here is hoping that our advocates can be truthful, accountable and up-front about what is happening.  There can be a time and a place for secrecy but when it is about us, NEVER! Let’s learn from mistakes of the past, people matter – Nothing about us without us!