Second Best

 

Image shows a young girl from the 1950s with what looks like a runners up trophy.

The Disability community fought hard for the NDIS. I remember attending many rallies. I responded to many petitions, completed many surveys and raised the issue of the need for the NDIS through my work. I remember the then Chair of Australian Federation of Disability Organisations, Dean Barton-Smith, at one rally pointedly stating to the crowd. “The time for talking is over … “ Eventually the disability community won and the NDIS came to reality in 2013. It was a win for the ages.

How wrong we were. The NDIS was created because it made economic sense. By introducing the NDIS and investing in disability, people with a disability could finally be equal members of our society. The investment in disability was to be an economic boon. Not only would it mean that people with a disability could finally get out into the community but their carers and families could also be supported to get back to work through the funding of additional support. Jobs would be created through increase demands for support, care and technology. Being able to get out into the community would mean people with a disability could spend money participating, going to restaurants, working and studying, just like everyone else.

Indeed the initial modelling of the NDIS highlighted this fact. The late and great, Mark Bagshaw, used to say that simply by ensuring disability access was an integral part of planning for the introduction of new infrastructure to society such as planes, trains, buildings etc so that they were accessible for people with a disability, the economy could benefit to the value of $43 billion. That was in the late 90s and early 2000s. How much would it be now?

The NDIS was partly created for this reason. Investment in people with a disability, PROPERLY, will benefit the economy. It does this by making sure people with a disability can participate. It does this through creating jobs and opportunities. Governments are always happy to spend billions of dollars on roads because it creates jobs and stimulates the economy. For some odd reason when it comes to investing in a similar way in people with a disability its no longer an investment. It becomes an unwanted cost.

It shows just how the Government really values people with a disability. They think people with a disability are second best. This is shown in how the NDIS makes decisions. The NDIS do not want to invest – They want to make it as cheap as they possibly can. They think that in this way, by spending less, the scheme will be sustainable. The reverse is actually true. I want to highlight here some glaring examples of just how the NDIS views second best as BEST!

When I worked as a Senior Local Area Coordinator I worked with a number of amputees. One lady I worked with had a lower limb amputation. She needed to upgrade her prosthetic. Hers was very old. It was worn out and sometimes fell off. She lived in a house that had a fairly steep drive way. More than once she had been walking down the driveway and her prosthetic had caused her to fall as it was no longer stable. A few times it had, apparently, fallen off all together while she was out shopping. It had got to a point where she feared leaving her house. It was causing her extreme anxiety.

When I met her she had been trying to convince the NDIS to fund her a prosthetic that had a microprocessor. She showed me a promotional video of the prosthetic. It showed a person being able to walk over uneven terrain. It showed them riding a bicycle. There was also a kind of secondary prosthetic that could be worn when swimming.

I am no expert in prosthetics. I am also aware that sometimes companies can exaggerate benefits. I also know that there are some disadvantages that include maintenance, charging and weight. Watch the video below. It will give you a small idea of what such prosthetics can do.

 

The participant was well informed. She wanted a microprocessor prosthetic. Indeed she had numerous reports from various OTs that also recommended the prosthetic as most suitable to her lifestyle. The NDIS wouldn’t approve it. They wanted her to have a cheaper fixed type prosthetic. Whoever their expert was didn’t feel the benefits of the microprocessor were enough to justify the cost.

The participant was adamant. This is what she wanted. She had the evidence of the benefit and she had jumped through every hoop that the NDIS had asked her. But the NDIS still refused. The participant was virtually housebound because the prosthetic that she had was unsafe. Her anxiety was so high that she feared leaving her home. This had been the case for over two years. Still the NDIS refused.

Anyway, she got fed up in the end. She emailed everyone from the NDIS minister, to the Prime Minister, the local MP, the media and god knows who else. She created a bit of a shit storm. I left my role shortly after, I still do not know the outcome. But I do know that she was virtually housebound for two years because the NDIS wanted the lowest cost possible rather than the best possible benefit. Second best is what they wanted. Second best is how they treated the participant.

I do not understand this approach. What I see is a technology that can assist the person with a disability to get out into the community. I see a technology that will enhance independence. I see a technology that will allow the participant to do things that they want to. I see a technology that will enhance their self esteem and self image. Further, by investing in this technology so that more amputees use it it is likely to see costs come down and the technology improve over time. But not the NDIS – They see only cost and how they can reduce expenditure as much as possible.

More recently Deaf people and people who are hard of hearing have been fighting with the NDIS over visual alert systems. Many prefer and are recommended a system called Visualert. I have never actually seen it myself but I know many want it. If you watch the video below, you begin to see why. (The captions send you to automatic French captioning , don’t ask me why.)

 

In Australia smoke alarm legislation is very strict. For hearing people the alarm must be heard from wherever they are in the home. The alarms must be placed where they are likely to be heard. If you have a two story home, alarms must be upstairs and downstairs. If your bedrooms are a long way from living areas it is recommended that alarms be placed in bedrooms or at least outside bedroom door. Alarms must be hardwired and have back up lithium batteries should the power fail.

It follows that Deaf people and people who are hard of hearing need a similar system. It needs to be hardwired. It needs to be seen wherever you are in a home – Outside and in. It cannot rely on batteries or remembering to wear pagers. It must alert you wherever you are – living room, kitchen, bedroom, toilet etc.

Visualert can be connected to other things such as the doorbell, baby cry alarm or security systems. If you are outside the system allows you to know that someone is at the door. If there are intruders you can be alerted that someone is prowling outside and so on. Unlike hearing people, Deaf people and people who are hard of hearing cannot hear their dogs bark or if there is a disturbance. Like hearing people Deaf people and people who are hard of hearing want to feel secure in their own homes.

So OTs and audiologist around Australia have begun to recommend the system because it keeps Deaf people and people who are hard of hearing safe. The NDIS is refusing them. They want them to install cheaper systems such as the Bellman system that rely on batteries, pagers and WiFi. These systems do not meet the same strict safety requirements that hearing systems must meet – No matter, we are just Deaf or hard of hearing – We are second best so second best is fine!

I don’t know about you but I am tired of our government making decisions about the NDIS that are based purely on cost. You see spending less may not actually lead to the NDIS being sustainable. It may actually lead to NDIS packages for people with a disability that are next to useless and money being wasted. Worse, it may not actually improve their circumstances or ability to participate. Or indeed, as we have seen, their safety.

I do not know about you but I am tired of being treated as second best – Nor do I want second best. A second best NDIS is of no use to anyone!!

 

An Uncomfortable Truth!

Image is of an evangelist with arms raised to the heavens. He is wearing a sparkly coat.

The evangelist was in full flight. “HALLLELUJAH”,  he screamed, ” Praise the LORD!” The congregation were in raptures. They swayed as one as they praised the Lord.  “Tonight”, said the evangelist, “…is a night for miracles.” The congregation screamed to the sky and weeped. “Come upon stage.” implored the evangelist, “… and I will heal you.” Bob in his wheelchair rolls up onto the stage, that thankfully had a ramp for him. Peter, who has a terrible stutter, comes up too. “What is wrong with YOU??”  asks the evangelist of Bob, perhaps missing the obvious. “I cant walk”, answers Bob. “What is wrong with you???”, asks the evangelist of Peter. “I. I. I I. cccccaaannnt sppppeeeaakk. wwwwweellll.” stutters Peter.

The evangelists asks the congregation to pray. Through prayer Bob and Peter will be healed. The evangelist beckons Bob and Peter over behind a screen so that they cannot be seen. The evangelists whips the congregation into a frenzy ….  “Oh lord, help Bob and Peter. Let Bob walk, let Peter speak!!!”. The eyes of the evangelist roll back in his head and he begins to speak in tongues. The congregation gasp. They scream to the lord to heal Bob and Peter. And then silence …. The evangelist falls to his knees, breathing heavily.

Slowly the evangelist rises to his feet. He raises his arms to the heavens.  “WALK”, implores the evangelist to Bob. Behind the screen there is a loud thud. The congregation gasp in anticipation.  “SPEAK!!!” screams the evangelist to Peter – and he speaks …. “Bbbbbboooobbbbbs. fffffaaalllllleeeen oooovvvvvver.”

It’s a bad joke, I know. Some may even be offended by it. But I’m sorry, this joke came to mind after seeing a ridiculous advertisement for hearing aids yesterday. Allow me to explain.

The NDIS has been a godsend for many people with a disability. For others it is less so. However, it is undeniable that many people with a disability have received immense benefits from the NDIS.

Deaf people have received interpreting money, for example. They use this money to purchase Auslan interpreters or even live captioning. They attend parties, weddings, funerals and even do short courses in things like gardening. Pre-NDIS Deaf people were often just isolated at events where members were mostly hearing. Those community courses, they could not attend because there was no access. Many doors have opened as a result of the NDIS. This is true of many other disabilities too.

One of the big things about the NDIS is that it has created a market. The market is made up of service providers who are all scrambling to convince people with disabilities to us their services over others. Some of the marketing tools are, to be frank, misleading and even comical.

The marketing ranges from the supremely negative to the sickly twee and revoltingly positive. The worst thing about  the marketing is that it is often disgustingly misleading.

The below is an example of more subdued advertising,

“With XXXX, you can get so much more flexibility from your NDIS package. You get to choose support workers that are right for you, to pursue your passions, achieve your goals ….”

I don’t have a problem with this really. I use it only as an example of the language that is used to try and convince  people with a disability to use particular services. It is a market after all, profit is the name of the game.

Then we have less ethical advertising. Advertising that misleads. Advertising that raises false expectations. Indeed advertising that is outright lies. Click on the blue text below. Click the back button to return to the article.

HEAR CLEARLY AGAIN

Cochlear are often most guilty of this when they promote the Implant  as a cure all for everything. They fail to highlight the enormous amount of work that one must do to receive benefit or, indeed, the fact that the Implant does not work for everyone. Don’t get me wrong, I know literally hundreds of people that have received enormous benefit from the implant. All I ask is a little bit of honesty. I see Cochlear like the evangelist, they almost raise false hopes and expectations. It is not healthy.

Then you have the out right negative, like the Prawn campaign:

Image is an attractive lady with a prawn behind her ear the represents a hearing aid.

This one paints deafness as a life sentence. It tells people that hiding your deafness is the way to go. That deafness is a thing of shame. It is ugly and must not be spoken of. The company misleads leads people into thinking that by having tiny wee hearing aids that no-one can see, that they will almost be hearing. Not accurate, not helpful and potentially extremely damaging to the psyche of people already struggling with their hearing loss.

And now to the subject of my ire and my cynicism,

Image is of a blonde lady with spectacles. Her hands are cupped behind her ears, fingers pointing up, she is smiling broadly. The caption says – I can her clearly now – It is an advertisement for a hearing aid provider.

The ad is disgustingly twee. I saw it and burst out laughing. After laughter came anger. Why??? Why must these providers lower themselves to such levels. WHY??? WHY do they underestimate the intelligence and ability of the paying public to see through this bullshit?  Why??? Why must they lie? Why can they not just say “ We have a range of hearing aids that might help you, come in for a free consultation.” Why??? Why can’t they just have a serious photo of someone consulting with an audiologist and looking at a range of devices. Why cant they have a disclaimer that says honestly “The benefits of hearing aids can very for individuals and may take some time adjust to.” Why must they sensationalise things and insult all of our intelligence?

The answer is probably money and the desire to make more of it. I find it really sad and insulting. But sadly, for all its benefits, the NDIS has created a world where people with a disability have lost their dignity and are just seen as the source of enormous profits.

There are many other providers that advertise in a similar way. For fairness I have provided further samples below. None come close to being as bad as the one above. All are misleading or negative, even ageist.


 

 

 

 

 

 

 

 

 

The evangelist joke that I began this article with is closer to the truth than we all want to admit. Hysteria and sensationalist rubbish abounds.

That, my friends, is the uncomfortable truth!!!

 

Australia’s Shame!

Graphic is an art work of a person with their head bowed in shame. Their hair hangs down and Deaths sickle is raised above their neck

I walked into the classroom and she flashed me a beaming smile. She finger spelt her name and showed me her sign name. Her signing was a bit rudimentary but easy enough to understand. She was at a school in remote Australia and I was her support. She was tall and graceful, even regal. There was an evident gentleness about her. I had just taken a break from full-time work so that my wife could further her career. I was the support person at the school and she was one of the first deaf Aboriginal people that I had ever supported.

Amanda sat with Carly, the other deaf Aboriginal person in the class. They sat together at the back. In the morning the schools home class got together. The class teacher would update the kids on the recent happenings, changes and events of the day. There was no interpreter. Being deaf myself meant that I could only pick up some of what was being said. I did my best to relay this to Amanda and Carly. They didn’t get much really.

At 9 o’clock it was time to go into classes. I expected to follow Amanda and Carly into the class but no. The classroom teacher came to me me and gave me the days lesson. I was to take Amanda and Carly into a room and teach them. I have half a teaching degree but I am not qualified. Nevertheless, I found myself as their teacher.

During the day no-one spoke to Amanda or Carly. Not the predominantly white students and not the all white teachers. Amanda and Carly sat together or sat with me. They gossiped and giggled as teenage girls do. The language of the two Aboriginal girls was delayed. Their conversations were very rudimentary. They would see a boy and girl together point, cover their mouths and giggle. Carly spoke often about her hometown. She would tell me several times a day where she was from. I from XXXXXXX, I back soon. Home, yes home, soon” (I have deliberately not said the name of the town so as to not identify who Carly really is.)

Carly hated school and it was her intent to go home. She had a rich benefactor who was head of a mining company. He apparently paid for her to attend the school. He paid her flights, accommodation and other costs. One day the man visited the school. The school made a big song and dance of the visit. They put on a morning tea for him. Carly was nervous and worried. When the man arrived she bowed her head and would not make eye contact. She followed the man into the room looking down at her feet. She would give him his tea and some food, never once looking at him. I found this really concerning and bizarre.

I am a white person so cannot really speak with any great expertise about the customs and culture of Aboriginal Torres Strait Islander communities. At any rate across the various communities and nations the customs and culture will vary. I do know that averting the eyes in some Aboriginal Torres Strait Islander communities can be seen as a sign of respect.  The mining head was at least 60, Carly was 16. She used to tell us how she was going to marry him and have his babies.  I do not know what went on, but I do know I felt very uneasy about her relationship with this man.

I remember looking forward to my working day with Amanda and Carly. I would walk into the room their faces would light up. Amanda would sometimes bring me food from her home to try. Kangaroo tail and goanna. I found the Kangaroo tail incredibly tough to eat. As I gnawed at it Amanda giggled uncontrollably.

One day we were out on a sports trip. These trips usually involved Amanda, Carly and I sitting together. They never mingled and we would just chat until the event was over. I suppose people would say it was my role to facilitate interaction, but hell I am deaf too – there was not a hell of a lot that I could do. No one really cared about them anyway. We came back from the trip and Amanda’s family were gathered around a truck. Amanda ran off to see them. She came back wailing and crying. She held her head in her hands and rocked back and forward.

I asked her what was wrong. She just signed dead, dead, dead.  I asked her who had died and she did not know. She was just mimicking the behaviour of her family members. They could not really communicate with her either and Amanda had no idea who had died. Nevertheless, she mourned and grieved in support of her family.

I vividly recall teaching Amanda one day. I was trying to teach her basic fractions. I was using pie charts and unit cubes and trying to link portions to the fraction written on the blackboard. Amanda had a defensive mechanism that when things got hard she would cry. I tried to ignore this and keep her on task.

As I was teaching her the head of the visiting teacher service walked in and saw Amanda was frustrated. She beckoned Amanda and encouraged here to sit on her lap. She cradled Amanda’s head on her shoulder. She admonished me. Told me to stop. Told me that Amanda had no need to learn fractions because she would just live at home and raise children. I was told not to waste time on things that would not be needed. Amanda was 17 years old.

I worked with Amanda and Carly for only one year before leaving to take up another job. I never saw them in person again. From time to time an Aboriginal friend who supports Amanda would contact me to let me know how she was going. Amanda apparently remembered me fondly. I am glad that I at least had that positive impact on her.

About a year ago as I was getting out of the car, 17 years on from when I had last seen Amanda, my phone rang. The Aboriginal support person was calling me on FaceTime. I answered and the person was with Amanda. It was a beautiful surprise and I had a chat with Amanda. Her smile was as broad as ever. Her natural grace was still evident. I spoke with Amanda who told me she had been in jail, she was a bit frightened and my Aboriginal friend was helping her.

It transpired that Amanda had entered a community where she was not allowed according to the Lore. Of course Amanda would have likely not understood this. She had been confronted and in defending herself she had assaulted someone. I am not sure of all the details but I do know that it was considered severe enough to lead to her spending some time in jail.

I know that she had to go to court with very little support. She went to court with no understanding of the process nor the likely outcome of her court appearance. The end result was that she ended up in jail.

This is, apparently, not uncommon. Many Aboriginal Torres Strait Islander people in jail are deaf or have disabilities. They go to court with little support or understanding of the process. Many are unable to explain their actions. They are unable to say, for example,  whether they acted in self defence. They are unable to explain that they have little or no understanding of the law or Lore. They have no defence and no support. Yet, they end up in jail.

Just recently I received an update about Amanda. She has been diagnosed with an acquired brain injury, probably as result of numerous head injuries from assaults. She also has Frontal Lobe Atrophy brought on by years of alcohol abuse going back to her childhood. She is losing her short term memory. She now has behavioural issues and will attack people she sees as a threat. I am told that she carries bricks in her bag as a means of defence because she trusts no-one. She has to go to court again with the threat of jail – despite all of her various disabilities.

This is a far cry from the gentle, graceful, regal young woman I once knew and for whom a smile was never far away. I am told she remembers me and sometimes asks about me. I hope she remembers me fondly and that the memory gives her some comfort in her current dreadful existence. I weep for her.

As for Carly,  she apparently lives on the streets in a remote outback town. In the last few months she has been raped 7 or 8 times. She never did marry the mining head, who quite possibly abused her too.

It is worth noting that despite being only 3% of the population Aboriginal and Torres Strait Islander people make up 29% of people in Australia’s jails. They are more likely to be fined and pulled over when they are driving and then end up in jail for not paying the fines. It has been said that 90% of Aboriginal Torres Strait Islander people in jail also have a disability. Many of them deaf!

Amanda was one of them and maybe will be one of them again. How many more Aboriginal Torres Strait Islander people like Amanda are in or will end up in jail??  This is Australia’s shame!

Footnote:  Amanda and Carly are real people, their names have been changed to protect their identity.

Pissing off the disabled … Here is how!

Photo is of Stella Young. She isn sitting in her wheelchair cupping her chin with her hand. She is looking upwards very cheekily.

One Christmas I invited the neighbours over. Dave and Elsie were in their seventies and I thought they would be good company for my Mum and Dad who were visiting. Dave was a good bloke and he often helped me out with little handyman things around the house. We were discussing my deafness, as you do. I was trying to point out that my life is not tragic, nor sad, that I am not inspiring and that going to work, paying for a house and bringing up children was just what humans do. “Im just living”, I said, “…nothing special.”

I was trying to explain that people with a disability actually find it really awkward when people hold them up on a pedestal for doing ordinary things. I told the story of my mate Rob who is a wheelchair user. One day we were in Alice Springs at one of their more classy hotels. My work colleagues were having dinner. Dinner was upstairs. To our horror, in 2003, there were no lifts. Rob, being a wheelchair user, was stuck. He couldn’t get up the stairs. Boy was he pissed off. Rob was going to do dinner with us all whether the hotel liked it or not.

We all said to Rob not to worry. We would find somewhere else to go. Bad luck for the hotel, they would miss out on a table of 20 and all the profits that went with it. Rob was having none of this. He called over the manager and he said – “I am booked in for dinner, and dinner I am having. Get your staff to get me up those stairs.” I looked over at Dave as I was telling this story, I thought he was going to cry.

So Rob insisted he was getting up the stairs come hell or high-water. The manager looked aghast but he could see that Rob was serious. So the manager called in a couple of burly porters and got them to carry Rob up the stairs. No easy feat given it was an electronic wheelchair. But they did indeed. They picked up the wheelchair, Rob and all, and carried Rob up the stairs.

I was chuckling as I recalled the story but Dave, his wife and my parents looked horrified. I said to them, ” It’s a happy story, Dave got what he wanted and probably because of the the Hotel will now start seriously thinking about putting in a lift.” But Dave, Elsie and my parents just looked at me remorsefully. You could just hear them thinking how tragic Rob’s life was. I tried to break their mood. I tried to point out that Rob was just asserting his rights like any person would.  In the end I gave up.. I could see that nothing I could say would change their perspective.

Stella Young explains it best ….

Meme shows a quote from Stella Young – We’ve been sold this lie that disability makes you exceptional and its honestly doesn’t …I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.

In my clumsy way this is what I had been trying to point out to Dave, Elsie and my parents. That Rob wanting to have dinner with his mates was nothing exceptional. That he had to jump through hoops to do that was a pain in the arse but he was just doing what we would all do. I mean, if you went to a restaurant and you couldn’t open the door, you would bang on it and insist that some one open it. Thats all Rob did.

As I have become older I have become more cranky and less tolerant of Ablebods. I have got to a point where I sometimes want to scream at them. Just before I started writing this article I was at a caryard. A salesperson came up to me and started yabbering. I said to him that I was deaf and needed to lipread. Bless his cotton socks, he began to finger spell to me.

I said to him, ” Lucky I can finger spell otherwise I wouldn’t know what the fuck you were saying.” He kept finger spelling, slowly and painfully …… “I  H A V E. N O T. U S E D  I T  S I N C E. I  W A S. A T. H I G H. S C H O O L”   He was 60 if he was a day. This perspective of hearing people that if you are deaf therefore you must sign always befuddles me given that 98% or more of people with hearing loss cant sign at all. After 47 years I am getting less able to smile at them with gratitude and say thank you for trying. Even though I am well aware that they mean well.

It’s been a week for this sort of shit. Yesterday I was at a restaurant. I was with a deaf mate and I was signing to him. He cant sign very well but I am trying to help him get better. Anyway, the waitress came over to help us. She was lovely and said she could finger spell. I really wasn’t in the mood to watch her as I wanted to chat with my mate. Politely I told her I thought that was great. I told her she was welcome to come back later and try her finger spelling on us. Bless her cotton socks, she looked so excited.

So we had a lovely dinner overlooking Moanna Beach. We were just about ready to go and the lovely waiter comes back and finger spells, “.. H O W. W A S. Y O U R. D I N N E R.”  The Vino had mellowed me a little bit. I told her she was pretty good. I taught her how to sign it rather than spell it out. She said she would remember. We had a chat and she told us she was from Queensland and hoped we would come back so that she could practice some more. I mean she was just lovely, but when you must deal with this almost everyday you sometimes can be forgiven for not wanting to be someones inspiration and feel good story for the day.

And just the day before that it happened again. This time I was on the phone to the bank using the dreaded National Relay Service. I was trying to get the bank to email me rather than call me. The person at the other end was all confused. He didn’t know what to do and had to go and consult his manager. All I wanted was an email, but this is the life I lead. The guy comes back and asks this ….

“….Gary you have a partner, is she deaf as well? as we could speak to her and she could relay to you , sorry i mean sign language? “

Again that perspective that all us deafies sign … I was very patient .. Pointed out that my wife was indeed deaf … That I would prefer to deal with these things without having to have messages relayed and would like someone to email me … To their credit the bank did exactly this. Even though I got my way, the fact that I had to jump through hoops for this simple request made me want to throttle some one. But no, I smiled and was as nice as can be. As nice as a buzzy bee.

But spare a thought for my friend who had to deal with the below …..

” …My LAC suggested that while I’m waiting for approval for a visual fire alarm, I could ask my neighbour to keep an ear out (and give them a copy of my house keys) to let me know the fire alarm is going off in the middle of the night while I’m sleeping. Or my 8 week old baby (at the time) could cry and I could be woken up through the baby alarm. Lovely!”

I’ll just leave that right there. Imagine if you needed waking with a flashing light cos there is a fire and being told not to worry, your baby will cry if there is a fire, your baby cry alarm will go off and save you all.  Imagine that … Well, buzzy bee gets just a little less happy.

I tell the above stories because more than once this week when I recounted the stories I was told not to be an arsehole. It is true that I was sarcastic and that I was cynical, but I was also frustrated. I even got told off for being condescending in using the term “Bless your cotton socks”  I love the person that told me off  for this dearly. All I can say is that when you have a week of being patronised, talked down to and being the centre of everyones feel good story your patience wears a little thin.

I am always polite and friendly to all those people that try! ( God that sounds so condescending.) But fuck me, spend a day in my shoes, in the the shoes of the deaf or the shoes of any disabled person and you will understand why sometimes we just want to fade into the wood work.

Ill leave you with the words of the late and great Stella Young.

” ..From time to time, people pat me on the head. It happens on public transport, in the supermarket, in bars. It’s a common enough occurrence that it very rarely takes me completely by surprise.”

Yup, fuck yes – Every person that knows a little bit of sign and assumes the I won’t mind as they painfully show me what they can do, thats my equivalent of a pat on the head. As Stella said,  It doesn’t surprise us – but very often it pisses us off ..!!

Clueless …..

(For an Auslan translation of this article, please scroll to the bottom.)

Kruger and Dunning wrote an academic paper in 2008 about people who think they are way more clever than they actually are. These people do all that they can to convince you of such, no matter how obviously not clever that they are.  Kruger et al told a story of a man that robbed a bank in broad daylight. He made no effort to hide himself. He just had normal clothes, wore no mask, walked in, presumably threatened the teller with a gun and walked out with his ill gotten gains.

Less than 24 hours later he was arrested. His actions had all been caught on the surveillance cameras. Televisions across the nation broadcasted the man’s misdeed. He was mortified when caught and asked how they knew it was him. The police explained that he had been caught on camera. “No way!!!” exclaimed our brazen robber, “I wore the juice!” Apparently he had been told that if he smothered his face with lemon juice, he would be rendered invisible to the cameras.

Kruger et al point out that …

“…in many domains in life, success and satisfaction depend on knowledge, wisdom, or savvy in knowing which rules to follow and which strategies to pursue. This is true not only for committing crimes, but also for many tasks in the social and intellectual domains. “

Perhaps I am being mean but what they have just described are behaviours of many hearing people towards Deaf and hard of hearing people every day. Some of the behaviour is just so ridiculous, it is beyond comprehension.

The above mentioned article was sent to me by a friend. My friend is deaf ( not culturally hence the small d). He is a scholar and has a Phd. He deals with any number of “hearing professionals” everyday. The bane of his life is Hearing Australia. This organisation is Australia’s biggest provider of hearing aids. They have literally millions of Deaf and hard of hearing people on their books and have been around since time began. One would think they would know a thing or two about deafness – right?

The esteemed Hearing Australia have one major fault. They don’t know how to communicate with their customers. You see, they insist on calling them on the phone for appointments. They do this insistently. My scholar friend got a bit fed up with this and decided to do something about it. He complained and asked that they please only communicate with him through text. They apparently promised that in future they would.

And they did. Seemingly, we should all go and celebrate another win for our never ending need to advocate – right?  WRONG!  The esteemed Hearing Australia sent my friend a letter. Basically the letter screamed IT’S CHECK UP TIME. Then, they asked my friend to please ring them for an appointment and provided the number for him to do so. ( I am hoping by now the lemon juice story is starting to hit home to the reader.)

My friend was rightfully pissed off. He wrote back and  told them a few home truths –

“…..We are people who experience a severe disability. Power trips and dehumanising behaviours from your staff is unnecessary and traumatic for some. In my case, the voice telephone has been a constant barrier and source of great difficulty. That it causes me and others anxiety should be no surprise.

Constantly emphasising the telephone is thus perceived as taunting, belittling, and bullying. Especially given my repeated requests to stop and use accessible communication.”
 
I really could not have said it better. To add insult to injury, Hearing Australia failed to recognise my friend’s hard earned title of Dr. The computer had printed his title correctly, eg Dr So and So. The clerk, presumably thinking that it was not possible for one of their clients to have such and important title, scribbled out the Dr and wrote in Mr. True story.
 
My own battles have been with the banking industry recently. One would think that an industry so well versed in customer service would understand that they need diverse communication strategies to deal with the needs of their diverse client base. One such professional caused me to miss out on a house that I bid for. He was too slow to complete the finance application, and then emailed me the following … “… I apologise, but as you know it is very difficult to communicate expediently with  you because of your disability …” I pointed out that it took but a few moments to read and respond to an email and that the difficulty was with him, and not me.
 
More recently I have been dealing with a new finance broker to explore ways to refinance and restructure our home loan. I completed an online form and put in notes that they were not to call me. Email or text only I implored. They, of course, called me, several times. Not getting a response they finally twigged and sent me a text. “We are trying to call you, please call us back” 
 
Naturally I text back and say I am deaf, please text me or email. They were happy to do this. They sent me a link to an online fact finder program where you enter your financial details. I dutifully completed this and it took me to a page where I had to chose a time where one of their representatives could call me about the information that I had just submitted.
 
I thought to myself that they would have a note that says don’t call and to email etc – I knew full well that this was probably not going to happen. What can I say? I am an optimist. I submitted my information and hoped to god that they would not call me. Go ahead, laugh at me. Suffice to say that eventually they stopped calling and are now corresponding totally by email. But fuck, it was exhausting to get to that point.
 
Spare a thought for my friend who fought to have an interpreter at her meeting with the bank, and eventually brought her own, paid for through her NDIS money. Only to be told that they didn’t trust her interpreter to interpret accurately the legal information. They questioned whether the interpreter that she had brought with her was qualified enough. They told her that they had booked their own interpreter who would join the meeting online. They beamed up the interpreter who was based in New Zealand and used New Zealand Sign Language. A different language from Auslan. My friend stormed out and has since found a new bank to deal with her issues. It is really unbelievable.
 
This brings us to our recent articles that have protested about the treatment of Auslan and the Deaf community by organisations that should know better. These organisations continue to give Auslan and the Deaf community minimal exposure and recognition. You can read my last angry post on the subject here – HANDS ARE BURNING
 
To the credit of the organisation concerned, they have apologised unreservedly –
 
On behalf of Townsend House, I apologise unreservedly for the disrespect that you and/or any other Deaf (or hearing, or Hard of Hearing) individual has experienced due to the Can:Do 4Kids marketing campaign at Colonnades. I assure you that this was unintentional and I understand that despite this, pain and disrespect has been felt. For that I am sorry. I will work with our entire team at Can:Do to learn from this incident.
 
Last week we launched a new ad for Board directors, it can be found https://www.henderconsulting.com.au/ under positions.
As mentioned in my last video we are always open to direct feedback and I encourage members of the Deaf community to join our Deaf Directions Roundtable to provide direct feedback the organisation, including the Board.
 
Heidi Limareff
 
I very much appreciate the apology and the sincerity behind it. It is a refreshing change from organisations that constantly gloss over their errors. True, what occurred should not have happened, but by recognising the errors, they can begin to correct them. I thank Heidi Limareff, the Chief Executive, for submitting the apology. It took a lot of gumption to do so.
 
But still it was another step and another complaint that we Deaf and hard of hearing people must make every day. It is part of our never ending quest for equal rights and equal recognition. It is exhausting. Advocacy fatigue is a real thing. The apology from the Can Do group makes it worthwhile. However, if the apology is not met by appropriate action it all becomes worthless again.
 
Here is hoping that their actions will speak louder than their words because I for one, am exhausted!
 
FOOTNOTE:  I  am well aware that there is a National Relay Service. I use it when I must. However, I prefer to communicate without a third person where possible. Apart from that the NRS is sometimes not reliable and can be prone to drop outs and longish wait times. Furthermore, we are now must register for the service by April 20th otherwise we cannot use it. Another daft and incomprehensible requirement thought up by the clueless…
 
 
 

With thanks to Marnie Kerridge for the Auslan translation of this video. Marnie is a professional theatre consultant and has worked on Auslan translations for mega stage performances of shows like Les Miserables and Billy Elliot. happy Auslan Day to all our readers and watchers for April 13th.

 

 

butt.mp4 from Marnie Kerridge on Vimeo.

Hands Are Burning ….

(For readers that prefer Auslan, please scroll down for the brilliant Auslan translation provided by Gavin Rose-Mundy as a service to the Deaf community.)
The time has come
A fact’s a fact
It belongs to us
Please give it back
How can we dance
When our heads are turning
How do we sleep
While our hands are burning ….
(Adapted from Beds are Burning, Midnight Oil – Perhaps a new anthem for the Deaf community)
Peter Garrett from Midnight Oil is said to have written Beds Are Burning after touring the outback and seeing the appalling health and living conditions of the First Nations people. The line, “Let’s Give It Back”, says it all – It’s time to give back what was taken away. Sadly, since Garrett wrote the song, not a lot has changed. Arguably, as Australians’ continue to prosper, the rights and conditions of First Nation people have continued to decline.
In fact First Nation people make up the bulk of prison populations.  They experience debilitating health conditions at a 2.3 % higher rate than other people that live in Australia. Let’s not forget the continued erosion of their human rights through appalling Government policy, like the cashless welfare card that initially was directly targeted at them.
What is not often spoken about in all of this tragedy, is the erosion of First Nation peoples’ languages. In fact it was not until 2008, that the Australian Government did anything to attempt to preserve these rich languages. Consider this:
None of this was on my mind yesterday. I was spending some quality time with Marnie. We were in a food hall at Colonnades Shopping Centre. I couldn’t decide what I wanted to eat so I told Marnie to just get something and I would share hers. “What if I don’t want to share?” she jokingly asked. My reply was, “Then I will starve …”
Colonnades is the new home for Can Do for Kids. It’s a huge and brilliant complex that Can Do have set up. A lot of their therapy for kids happens there as well. They have multi-sensory rooms and a whole assortment of state of the art therapy facilities. So huge is the centre that it is hosted where the old Myer shopping complex used to be. Clearly the Can Do Group are not short of a dollar.
As we waited for our food Marnie pointed out to me that Can Do were advertising on the many television screens throughout the Centre. I watched as a mother explained that she was accessing Auslan. I paraphrase here what the mother said, ” .. We are using sign language because little Johnny can’t talk yet …”
I can see every Deaf person in Australia screaming WTF as they read this.  Or as my friend Becky exclaimed just the other day, “I’m Auslanless …” A clever take on the hearing phrase, “I am speechless ..”
I confess that the true impact of the mother’s words did not hit me straight away. Marnie pointed them out to me. For readers who have not yet grasped the implications of what the mother said, I will explain. Basically the mother is implying that Auslan is just a stop gap until their child can learn to speak. After that this hand flapping stuff wont be needed. Cos little Johnny will be able to speak, just like everyone.
I apologise to the mother if this is not what she meant, but it is certainly how it came across. What is more, organisations like the Can Do Group have form for this sort of stuff. One must not forget that Can Do also are now the host of the old Cora Barclay Centre who also have form.  Cora Barclay did put out that awful advertisement some years ago of the young man proclaiming in speech, after butchering sign language, “Now there is a better way …. “
Perhaps I am being harsh, but I don’t think so.  As I sat down to eat there was a flyer on the table. It seems that it was part of the Can Do Group’s blanket saturation of Colonnades that day. You can see the flyer below …
Can Do Group also host Deaf Can Do.  This service is what remains of the old and vibrant Royal South Australian Deaf Society. Part of the remit of the Can Do Group is to provide support to Deaf and hard of hearing kids and their families. This includes audiology, speech, language support and Auslan. Yes, Auslan.
If you look closely at the flyer there is no mention of disability at all.  There is no mention of Deaf, hard of hearing, blind, vision impaired, autism etc.  All of these groups are among the people who the Can Do Group supports. They will deny it until they are blue in the face but I am of the strong belief that this is a deliberate marketing ploy.
Disability and all of the various terms associated with it are seen as negative and to be avoided. They have a picture of a beautiful smiling kid. As “Normal” as normal can be. They do this because they think if they mention such terms associated with disability too often, it will scare parents away. Not only would this mean that the Can Do Group would not be able to support these children but the Can Do would also miss out on the lucrative money to be earned through these children’s NDIS packages.
Debatable, I know.  I encourage the reader to look even more closely at the flyer. Not only is there no reference to disability,  there is no reference to Auslan which is, supposedly, a core service of the Can Do Group …… BUT, loudly and clearly the flyer proclaims that Can Do for Kids offers Listening and Spoken Language support and a little bit further down – Audiology.  No Auslan though. An oversight? Possibly, but I don’t think so.
My view is that they have deliberately excluded Auslan because, consciously or unconsciously, they believe that Auslan is inferior and not worthy of promoting with such important services as listening, spoken language and  audiology.
To me this is the final insult. It seems at this present time that these hearing professionals are on a path to eliminate Auslan. In fact, it seems that they are hellbent on demoting the Deaf community to the bottom of the rung. It follows on from the appalling treatment of the Deaf community by NextSense, the old Royal Institute of Deaf Blind Children (RIDBC) They, of course, promoted their new brand without a single reference to the history of the Deaf community in establishing the organisation and without a single Auslan version of their promotional material. They did not correct this until they realised the palpable anger of the Deaf community. As an afterthought they apologised and started preparing some Auslan versions. It was disgusting.
I have had enough. The Deaf community have had enough. We should all be fed up of being neglected and forgotten by the very organisations that are supposed to serve us. In many cases, in fact most cases, the Deaf community were primarily responsible for the establishment of these organisations. Despite this, many of these hearing professionals continue to treat the Deaf community and Auslan like dirt. It must stop!
The Deaf community is a rich and vibrant community with a wonderful history. Auslan is one of the sign languages of the world. It needs to be preserved and respected. Deaf people need to be at the forefront of the services that these organisations provide to Deaf and hard of hearing people. We need to be included and consulted every step of the way.
It is my belief that the exclusion and continued non-reference to the Deaf community and Auslan by these organisations is a deliberate ploy. They see us as inferior and not worthy of a place at the table . The Chair of Can Do is hearing with a history of finance and services. The Vice Chair is is hearing and an academic in psychology and social work and Flinders University.  The directors are all hearing and include an accountant, someone from the Arts, a lawyer, and HR person from an Australian Disability Enterprise (Sheltered workshop). All of the paid leadership team are hearing. There are no Deaf community representatives. There is no-one that represents Auslan. What does that tell you???
It is time for the Deaf community to rise. No longer can we accept this disgusting treatment of the community and its language. It is time for the community and the language to be represented in the upper echelons of the Board and the leadership teams. It is time that the community were heard, properly represented and respected!
Rise now, be heard and be loud.  For if we do not, the Deaf community is at risk of losing its identity and its language!
ENOUGH! Our Hands are Burning!
FOOTNOTE: I wish to be clear that the ongoing treatment of First Nations people is horrendous. The racism, marginalisation, destruction of lands and erosion of First Nations peoples’ autonomy and culture is among the worst human tragedies imaginable. In making the comparison between loss of language and identity of the Deaf community, I, in no way, wish detract from the terrible treatment of First Nations people – I apologise if any offence is taken.
I wish to also acknowledge the brilliant Auslan translation that Gavin Rode-Mundy has provided of this written Blog. What Gavin has done is an example of the wonderful work that Deaf interpreters can provide. This translation is a professional translation and without Gavin’s kind donation of his services to provide an Auslan translation of the article, many Deaf people that read this article would not get access to this information in their language.
Such translations should be provided for all information that is provided by Organisations that support Deaf and hard of hearing people. They should be provided by all Government agencies for all information. Preferably this information should be translated by professionals like Gavin and with the remuneration that it deserves. The Rebuttal receives no income and in recognition of the importance of the information within this Blog Gavin has donated his services.
In solidarity I thank Gavin for this vital service to the community. I hope that the article and this translation will encourage the Deaf community to fight and protest against the continued disrespect that they are being subject to.