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!

 

 

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 25^th” 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 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!!!!!

 

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).

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.

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!

After a while, positive people, sick of being talked about, decided to intervene with an unambiguous message: these are our lives, our bodies, and our choices. So talk to us as if we matter. We are the reason you are here. In many ways, this approach has been the enduring hallmark of our response as HIV positive advocates. That it should be we, the people living with HIV and AIDS, who, where possible, represent ourselves, and speak for ourselves to government, in clinical research, or around any other table where significant decisions affecting our lives and health are likely to be taken. (Peter Cannavan, Writing in The Australian Health Consumer.)

And why not? People with HIV have the right to make decisions for themselves about themselves. Says Cannavan, “Talk to us as if we matter.” HIV is a relatively new disease, a 20th century disease so to speak. But in a relatively short space of time people with HIV have cottoned on. Decisions were being made about them and without them. Very quickly they said ENOUGH! They demanded, as Cannavan puts it, CENTRALITY,  which simply meant that people with HIV were crucial in deciding what needs to be done about HIV. Cannavan’s view is that this should be top to bottom whether it be about drugs, care, prevention and awareness campaigns. One of the biggest wins that people with HIV had was to have approved the Special Access Scheme which was a program that allowed people with HIV access to drugs that were not yet approved for use in Australia. In short people with HIV had control and input. This is a far cry from disability.

Disability is, by and large, controlled by non disabled people. Our needs are represented largely by charity and welfare based organisations that are headed largely by people without a disability. Recently I have been campaigning about the upcoming Disability Employment Summit. Here we have a key summit that will discuss the future of employment support for people with a disability. No where on the agenda is there a person with a disability or an organisation run by people with a disability contributing to the discussion.  Unless one includes Graeme Innes, who is blind, and who is speaking about the impact of employment for people with a disability, the whole program is dominated by academics, Government bureaucrats and people aiming to promote themselves as key Disability Employment Service providers. No where have people with a disability been invited to express how they feel about the Disability Employment Service. No where on the agenda are personal experiences and stories about support provided by the Disability Employment Service, good or bad, given air-time. It’s just a variety of bigwigs patting themselves on the back.

And then, of course, the conference organisers had the gall to tell me they would not provide me with interpreters after at first promising that they would. Here we have a major conference about disability that I am attending as Professional Development for my work and no access is being provided. AND because they would make a loss of $700 my registration. This despite the fact that the conference  organisers will make many thousands of dollars in profit from the DISABILITY MARKET. Lets not forget they are also BREAKING the law by refusing my access unless they could cry poor which they clearly could not in this case. Although they did try.

Now I am a person who is fortunate to be able to advocate for myself. Not everyone can. This conference was about ME, I wanted access, I took control! This kind of advocacy is my bread and butter. I know the legislation and through my work in the disability sector I have extensive networks. Now accepted wisdom is that I should enter into a dialogue with the conference organisers and remind them diplomatically of their obligations. What is not accepted is that I should email the conference organisers with a CC to all their keynote speakers, the Disability Commissioner at the Human Rights Commission, major Government departments, Universities that use the company to organise conferences and key disability advocates around Australia.  This is what I would call being a Dirty Advocate, Bad to the Bone so to speak.

Leave this one alone

She could tell right away

That I was bad to the bone. (Lyrics from Bad to the Bone.)

And as it was a female that I was emailing this is exactly what I wanted her to feel!

Accepted wisdom  is that one should give the conference organisers an opportunity to respond before letting the world know. I did this in reverse. Why? Well because experience tells me that negotiating with organisations like this is a long drawn out affair. The conference organisers chose to let me know that no interpreters would be provided JUST ONE MONTH before the conference despite having guaranteed me in AUGUST that interpreters would be provided. They offered me a full refund on my fee which I refused. Here lies the no brainer, they complained that they were losing $700 on my registration yet they were willing to give up the full $2099 registration rather than book interpreters. Do the maths.

The reality is that it was not me that was playing dirty but them. They knew very well that by telling me at such short notice that it was unlikely anything would be resolved on time. BUT I am the new breed of advocate and I play as dirty as they do. Indeed it is the only way in situations like this, hit hard and take no prisoners. In no time key speakers at the conference were contacting me and asking if they should withdraw. Others contacted me and told me to stick to my guns and not to waiver on my demands. In short I had a wave of support.

What is amazing is that the conference organisers emailed me by REPLY. Down below the reply was all the internal communication that the company had had before emailing me. I was apparently “An angry gentleman” and it was a “scandal that he has CCd everyone.” I had also taken the liberty of contacting an interpreter supplier to make sure interpreters were available. It was clear that there were and I let the conference organisers know that the interpreter booking agency were “Standing By” to take the booking. This did not go down very well either.

What is more amazing was that the CEO of the organisation was clearly being encouraged to back down and provide interpreters but he chose to go against this advise. What was completely moronic was for him to cry poor over a $700 loss although he was willing to give up my full $2099 registration. As I said to my wife, he had a ticket to Nowhere. Eventually he backed down and agreed to provide. It took only three emails. As a postscript one of his staff contacted me in private apologising profusely and stating that “We advised him of our obligations but he completely ignored us.” The staff, it seems, were totally embarrassed and even humiliated. This is what I call fighting fire with fire – it is not for the faint hearted.

One of the most brilliant and creative advocacy campaigns that I have seen was the recent one by Deaf Victoria to encourage people to put AUSLAN down as their language of choice on the Census.  They were everywhere. In your face at every turn urging people to record Auslan on the Census. They were even a little bad too. They created a video that they distributed far and wide, especially through Facebook.

You see they used shock tactics and creative license to galvanise us all. The video, brilliantly made, showed a series of worse case scenarios. At the doctor – no interpreters, at work – no interpreters, at school – no interpreters and so on. The message was – Let the Government know about Auslan because if we do not the Government will stop funding Auslan interpreters and other services for Deaf people thinking that their is no demand.

Of course this was a long term and worse case scenario. Most of us are all intelligent enough to know that. Indeed these sort of tactics are common in politics. Witness Tony Abbott and the Liberal Party’s television advertising campaign about the Carbon Tax. If they are to be believed the Carbon Tax will  send us all broke and put thousands on the dole. Sad faced people with no money and no job are central to the advertisement. Of course it is all shock tactics. Totally acceptable, if you are not Deaf that is.

But Deaf Victoria, for their brilliant campaign, came under fire from our “conservative advocates”.  They were told they were misleading the Deaf community. That they would frighten people and were asked to remove the videos. They refused, and good on them for that. While certainly some would take the video literally most people are intelligent enough to read between the lines. Deaf Victoria showed the CONSERVATIVES the proverbial middle finger. They showed creativity, spunk and fight. Sure they were extreme but they were also brave and confronting. We need more of it. Deaf Victoria – The new Deaf Australia I say!

But best of all the Deaf Victoria campaign was by Deaf people for Deaf people. It was Deaf people coming out and showing the community how much they valued Auslan. It was an example of what Cannavan described as CENTRALISED advocacy where THE PEOPLE THAT MATTER were in control. There is so little of this in our Advocacy.

Our current advocacy groups largely are about sucking up, toeing the line and not upsetting those people in ivory towers. Softly Softly is the way it has been traditionally done. Sure diplomacy can work but in the Disability Sector this sort of advocacy means that progress is painfully slow. If Cannavan is to believed people with HIV, in 30 years, have taken control of their lives, their needs and their policy. They direct it and are involved at every turn. Where is disability? In the dark ages. Controlled, directed and promoted at every angle by people without disabilities. It is time to take control. A new breed of advocate is needed – We need people with fire in the belly and willing to fight tooth and nail for their rights. There is a place for everything but what we lack are advocates willing to be BAD TO THE BONE! The times they are a changing, step aside any who are faint hearted.