Same Shit Different Barrel ….

I was a sucker. I watched Deaf Divide on SBS. I told myself that I wasn’t going to. I told myself that it was going to rehash old arguments that should have been settled long ago. But like a cat struck by curiosity I had to have a look. I cringed the whole way through.

We have been having these arguments since forever. Many years ago, this priest or brother from a deaf school in NSW went on a crusade. He went on radio. He went on TV. He was in the newspapers. He told whoever would listen that hearing aids were so good that there was no need for deaf kids to use sign language ever again -EVER!!

I was a fledging advocate back then. Encouraged by Damian Lacey, then CEO of the Royal South Australian Deaf Society, we launched a protest. Lacey allowed the Deaf Society to provide all the resources that we needed. The Deaf Society provided us with resources and printing materials so that we could design banners and posters. He provided Deaf Society cars so that we could transport Deaf people to the protest. 

The oral zealot, for want of a better term, was speaking at the Cora Barclay Centre. We timed our protest for his and parents’ arrivals. Of course, we championed Auslan. We wanted parents to know that this zealot was giving them false hope and we wanted them to see this vibrant, proud and active community in full flight.

It was vitally important that we were heard. Yet again some zealot who believed that hearing was the only way to exist was trying to undermine the Deaf community. Yet again parents, already struggling to come to terms with having a deaf child, would be given false hope in technology. Yet again, the Deaf community and its members were having to justify their existence.

That was in 1990. Thirty-one years ago. What the Deaf Divide showed me on Tuesday was that we have not progressed one iota since then! It’s easy to blame hearing people for the problems, but you know, Deaf people are at fault as well.

For every hearing zealot, you have a Deaf zealot too. These zealots are anti-cochlear, anti-hearing or anti-anything that is not Deaf. One mother on the Deaf Divide spoke of being spat upon by a Deaf person because she had chosen a cochlear implant for her child. We have all heard of the Deaf zealots screaming child abuse to hearing parents who have chosen to give their child a cochlear implant.  These zealots are every bit as bad as the hearing zealots.

I fully empathise with hearing parents who have a deaf child. For most of them it is the first time they have really had to confront deafness. They, mostly, see deafness as a deficit. Not being able to hear is something that they cannot comprehend. They need a lot of support.

We Deafies have to accept that hearing parents of deaf kids want their kids to be able to hear. Hell, there are even Deaf parents of Deaf kids who want their kids to be able to hear. Some Deaf parents choose cochlear implants for their Deaf kids too. They realise that being able to communicate better with the hearing community will be a benefit to their deaf kids. Even these Deaf parents have been subject to abuse from Deaf zealots.

The Deaf parents are also subject to abuse from hearing zealots. Doctors who tell them, “We are very sorry your child is deaf”. Professionals that ty to convince them from the very first day to give their child an implant. I have heard stories of Deaf parents being accused of child neglect for refusing to give their child an implant.  

What these doctors and professionals do is constantly make Deaf people justify their existence. They make it seem like that the choice to remain Deaf and let their child be Deaf is negligent. When hearing professionals insist, wrongly, that to allow access to sign language will impede speech development they are saying that sign language is inferior to speech, it isn’t.

It’s like a tug of war. The hearing world and the Deaf world each have one arm of the Deaf child and they are tugging the child this way and that. Meanwhile, parents of deaf kids, hearing and Deaf, look on in bemusement while the two factions fight over their child.

It doesn’t need to be this way. Look, we know that cochlear implants have benefitted many deaf kids. They speak better, they write better and their literacy is stronger. Dr Greg Leigh from Nextsense acknowledges this. Deaf kids now have access to spoken language in a way that they have never had before. This is a good thing because they have language, we should all rejoice.

BUT! As good as cochlear implants are, they are not perfect. Not all deaf kids thrive with cochlear implants. Deaf kids with cochlear implants can still struggle in noisy environments. Not all deaf kids with cochlear implants can miraculously talk on the phone. Deaf kids with cochlear implants still use captioning. Many enter adult life and experience social isolation in the hearing community and seek out the Deaf community. There is no one size fits all.

All of us in the Deaf community want these implanted deaf kids to learn Auslan. Many are being prevented from doing so because some biased hearing professional will tell their parents that Auslan will impact on their spoken language development – This needs to stop, it is unmitigated bullshit. Such misinformation from hearing professionals devalues Auslan and every Deaf person that uses it.

The Deaf community also need to realise that learning Auslan in a hearing family is hard work too. For Auslan to develop well it needs good language models. Parents and immediate family need to learn it so that the deaf child can communicate with everyone. But parents and immediate family take time to become proficient.

Trained Auslan teachers are in short supply. Parents in rural areas can’t get access. While there is no doubt that Auslan will benefit the deaf child there are barriers for its acquisition within a hearing family that need to be addressed. It is unrealistic to just expect hearing families and deaf kids to easily become proficient in Auslan when the lack of trained personnel and resources is a real barrier to its acquisition.

But all these issues are overlooked while the “Zealots” promote their own agenda. The deaf child and the parents, both hearing and deaf, are forgotten. The warring zealots are more interested in promoting their own agendas rather than working together for the benefit of the deaf child and their families.

That is what I saw watching the Deaf Divide. Just an enormous division that seems to have gotten wider with the years. It seems we have not learnt our lessons from the past and its time that we did. 

Cochlear implants are a good thing. Auslan is a good thing. Together the deaf child is on a good thing. Combined they have the potential to provide deaf kids with a strong language base and full access to education and employment. It doesn’t need to be one or the other. It can and probably should be both.

But it won’t happen if the zealots continue to war. It won’t happen if organisations promote speech and listening in their promotional materials but not Auslan. It won’t happen if the barriers to learning Auslan in a hearing family are not addressed properly. It won’t happen if hearing professionals continue to lie and insist that acquiring sign language will impede the development of spoken language.

Most of all it won’t happen if in 2021 we cannot learn from the mistakes of the past. This is equally true for both Deaf and hearing factions.  If the Deaf Divide taught us anything, it is that the deaf divide is as wide as ever. It doesn’t need to be this way. 

It is time for Deaf and hearing factions to come together and banish the divide. If we don’t these same arguments that existed 30 years ago will still exist 30 years into the future. It will be same shit, different barrel. We all owe it to deaf kids of the future to stop this happening.

Triggers!!

I have two jobs. I have the one I am paid for and the other one which is mostly voluntary. In the second job I just help people who approach me. It is my pride and my curse that I am a well-known and respected advocate. What this means is that when people are in a difficult spot that they often reach out for help. 

This can be for many reasons. More often it is about the NDIS. The NDIS, as they do, make decisions that make no sense to anyone but themselves. So often someone will contact me to help them with their review. You know those Deaf plans with $3000 in them of which almost $1500 goes to a plan manager?  I help with heaps of reviews of these things. And get them fixed up. 

Sometimes I get paid for this, sometimes I do not. Payment is not that important. The important thing is making sure that the people who contact me get the support that is rightfully theirs.

In the last month I have been contacted to assist with quite a few things. Like the LAC who won’t contact the Deaf mother who is the primary carer of her son because it’s easier for them to call and talk to the father rather than correspond by email. Or the woman that got told by Hearing Australia for nearly three years that her hearing aids were fine and that she needed a cochlear implant. Only to find out that her aids had not been adjusted properly. She visited a private audiologist who adjusted her aids properly, so much that she scored 99% on a word recognition test (true story, and she went four years telling them something was wrong with her hearing aids, but they refused to believe her.)

I help with these things. I use my networks and knowledge of legislation and complaints processes. Mostly things are just voluntary because the system and people within it just piss me off. You cannot just leave people hanging.

It gives me a great deal of satisfaction to help people and to get good outcomes for the people that ask for help. I wish that I could tell you that it’s all warm and fuzzy, but its not. Often it is triggering.

I am deaf. I am discriminated against too. I have been victimised at work. I have had to fight for interpreters at university. These fights for my own equal rights and fairness leave scars. What this means is that when I assist people, paid or otherwise, their issues often trigger past trauma within me.

Last week I met a man who was on stress leave from work. He is deaf and has not been treated well. He is hugely qualified and skilled. But at work they undervalue him. They give him breadcrumbs. Menial work that no one else wants to do.

They exclude him. Don’t include him in team meetings. They don’t ask him for his views or his ideas. They rarely talk to him or show that he is valued. Often, they will say things to him like that he should lipread and doesn’t really need any extra help through Auslan interpreters. In short, they marginalise him.

I suspect that a lot of this is because people cannot accept, don’t want to accept or can’t be bothered to do the things that will make this man feel a valued member of the team. They think that to include him and really utilise his talents would be too much bother. I suspect that they half hope that he will go away. Resign and move somewhere else so that he is not their problem.

What they are doing to this man is hugely demoralising to him.  He has high absenteeism because his confidence is shot. Instead of trying to assist the man and find out what is really the issue they blame him, pressure him and refuse to accept responsibility for their own actions.

And you know he has no leave left and no income. He is in the middle of a workcover claim that can take many months to resolve. In the meantime, not only is he stressed from how he is being treated but he is stressed for his future. How will he pay for his house, support his family and so on?

And when you talk to him, he tells his story again and again. He knows he has already told you, but he ruminates. He cannot get it out of his head. As he tells the story he gets anxious. He breaks into a cold sweat. His eyes are wide and he looks around him like a startled rabbit.

At my last meeting with him I asked him if he cried often. Right there and then he burst into tears. He cries in private, cannot even tell his wife. Denies anything is wrong. He won’t consider medication because that will mean he is weak.

Part of my helping him is to help him to accept that he has depression. Part of it is to help him get the right support, the right counsellor and to heal. It is only then I can assist him with his workplace issues.

All of this is hugely triggering for me. I am sure there are other advoctes who experience exactly the same thing, triggers. Part of my being able to help this man is because I have been there.

I worked at a place that under-valued me. I worked at a place where managers committed to do things but would not follow through. I worked at a place where managers refused to respond to emails and follow through with promised actions that they had agreed to. You know, it was always my fault, no one would accept that the managers were behaving in a way that made it impossible to do my job.

When I was assisting this man I had huge flashbacks. I began to hyperventilate; my chest began to constrict. My body became tight and ached. I began to sweat. It took all of my reserves to hold it together.

I write this, not for any sort of sympathy, I write it so that people can be aware of how their behaviours impact on others. We live in an enormously audist world, where people who are deaf have nearly all the responsibility to fit in. 

People who are deaf, indeed most people with a disability, have to do all the adjusting. The have to jump through hoops to get support from the NDIS. They have to jump through hoops to get Australian Hearing to accept that their hearing aids are not working.  They are excluded because it’s easier to talk on the phone rather than adjust one’s own behaviour to create an inclusive environment. They are blamed for anything that goes wrong at work. 

And all because of an audist and ableist society that refuses to change. Some do and that is great but all too often ableist and audist people make it OUR fault because they are ignorant and, in many cases, just cannot be bothered.

And every day they trigger us. They cause us stress and exclude us because we are not like them and they think we should be.  This is why mental health issues are higher among people with a disability than others … And the behaviour of this ableist and audist society makes us sick! You don’t believe me?  Read this –

https://www.cdc.gov/ncbddd/disabilityandhealth/features/mental-health-for-all.html

It’s not fair, Australia needs to do better.

Australia’s Shining Light

Picture shows a person walking to a tunnel of light.

Linda Reynolds, Minister for the NDIS, was on TV today. She was being interviewed about the NDIS. The basics of what she said was that the NDIS is bloody expensive and we gotta stop spending so much on it. Yeah, you know people with a disability, bugger em, they are expensive folk. Lets feed em three times a week and take em to the park once month. That’ll do. Cos otherwise Australia is gonna bleed, and we cant have that. Can we?

In the same breath Reynolds said that Australia was a world leader in disability support. The scheme was brilliant she said. It’s a scheme that no other country in the world has. We disabled are so lucky to live here – But apparently the Govmint has a responsibility to the Australian tax payer … Gotta spend less so that those bloody corporate tax cuts can be paid.

So, the NDIS is world leading? Well it would and should be. I am a great fan of the concept. I want it to work, I really do. But it won’t work if people keep calling it a cost and not realise that it is an investment that reaps benefits. Not just moral benefits, but financial as well. Most of all it cant be world leading when it employs strategies, processes and people that are so bizarre, Monty Python couldn’t make them up.

Today I read an article about Western Australian lawyer, Tom Monks. Mr Monks is an amputee. He lost both legs in an accident when he was two years old. Long time ago! Monks was able to be accepted as an NDIS participant easily, but like for so many others, getting what he needs from the NDIS is an arduous adventure.

So last year, because of COVID, Monks didn’t spend as much of his package as he normally would. This was common for lots of people with a disability during Covid. Monk claims that at his review he was told bluntly that the NDIS would take some money away cos, clearly, he didn’t need it.

First thing the NDIS did was take away his travel allowance. Didn’t spend much of it so obviously not needed. Apparently Monks was told he has a wife, so she can take him everywhere. Monks is a wheelchair user and needs accessible taxis. It’s an expensive business. But you know, following Reynolds dictum, gotta watch the pennies, so this has gotta go!

It gets worse. They took away his wheelchair maintenance. They took away his physiotherapy and pain management budget which allow him to maintain function. So like many other people with a disability, Monks had to do a review to try and get back his funding. Three months on, god knows how many NDIA person hours , Monks had to prove he had no legs and indeed was in need of the stuff that they took away.

Maybe they thought his legs would grow back, who knows? They are a world leading scheme after all, they must know what they are doing. (As a footnote, Centrelink told Mr Monks he wasn’t disabled enough and asked him if his amputation was permanent – I wouldn’t put it past the NDIS to do the same.)

You think that was bad? Well the Guardian printed a story of a young girl who had one of the NDIS’s much vaunted Independent assessments. You can read about the Girl who uses wheelchair deemed to have no mobility concerns by NDIS independent assessment.

Girl in question, Eliza, lives with an intellectual disability and physical disabilities. She apparently has brittle bones and can break her bones easily. When her condition is at its worse she requires the use of a wheelchair. One might think, like Monks, that the needs are obvious. But Eliza and her family had to wait 16 weeks for the assessors report … Thats four months or one third of a year.

Some how, in a way that only an NDIS process and worker can do, young Eliza was deemed to have no mobility issues, none! As Eliza’s mother said, “I would imagine if I’m asking for a new wheelchair for Eliza because she grows out of the current one, they’re going to look at the independent assessment, and it says she doesn’t have any mobility issues,” Of course the NDIS claim that one answer does not make up their assessment, and that the mobility needs would have been captured in other areas of the assessment. You reckon? Nah, the NDIS have form, this is something they will latch onto to save money. They really are that bad.

And you know, none of this surprises me at all! I worked there and I can tell you I still have nightmares about some of the decisions that the NDIS made to save money. I once planned for a participant who had a genetic condition that led to multiple disabilities, – learning and physical. The girls first plan was pretty good. There was funding for physical needs, cognitive needs. personal care and so on. The parents were lovely, I loved visiting them.

A year on was review time. We got reports and recommendations from therapist and put forward a proposal. On the system there were multiple reports from the past indicating the girl has different disabilities. We put in the scheduled review expecting everything to be approved without issues. We were shocked when the girls funding was cut in half.

The parents were beside themselves. I got straight onto the delegate that had made the decision. “Well”, said the delegate, “… the system says she has an intellectual disability and none of the other disabilities are listed, so we removed that funding.”

I was livid. I reminded them that there were many reports that were stored on the CRM and that these reports list all of the girls disabilities and needs. These reports outline all of the girls therapy and care needs. I asked the delegate if she had actually read them. She had, apparently, but because only intellectual disability is listed s a disability on the system the delegate decided, in her infinity non-wisdom, that these needs were not valid.

Six months it took to get the other disabilities listed for this girl. SIX MONTHS. They made the family get all new diagnostic reports and refused to consider the information that was at their disposal in the system. Six months the family struggled for – SIX MONTHS – Because of a heartless delegate on a power trip!!!

I am sure that none of this surprises anyone. I assist a few deaf people with the NDIS. I help them with reviews and represent them. I send emails with the reviews that clearly state that I am deaf, to email and not call. Inevitably two or three times a week I will get a call that tells me “number not listed”. I know it is the NDIS because the NDIS do not want their numbers traced lest they get harassed by irate NDIS participants (True story) So you cant call them back.

The NDIS will continue to ring me for a week or so and then they will send me n email that says, “… tried to call you, please call us back!” Im sure readers feel my pain and frustration. We really should not be surprised given that Hearing Australia, our largest provider of hearing aids and hearing services, ring up their deaf participants for appointments. I wonder if they still call out names in the waiting room and then cross out the client as a non-attendee because they didn’t hear their name called. (Yes this has happened.)

So NDIS, the world leading scheme of disability experts providing supports that no other country does. The only scheme of its type in the world says Minister Reynolds. THE ONLY SCHEME OF ITS TYPE IN THE WORLD!! All I can say to that claim is – Well thank fuck for that!

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.

A Sorry Affair …

Image is of Prime Minister, Scott Morrison, eyes tightly shut and in obvious distress.

ScoMo is saying sorry a lot lately. He is saying sorry to the women of Australia. Sorry that they are being abused, raped, ignored and under-paid. He is even saying sorry for being sorry. He commented that women were lucky that they can protest cos if they lived somewhere else then they might be shot. He is sorry for having to consult with his wife to understand that abusing women is wrong. He is sorry that he had to think how he would have reacted if it were his daughter in Brittney Higgins shoes.

You see he lacks empathy of any sort. Empathy would have told him that abusing women in any form is wrong.” Im trying” he says – And he is sorry that if by trying to be sorry he offends anyone for the drivel that comes out of his mouth … Unsurprisingly, the women, and good proportion of men, have seen his apologies for what they are – Just a trite strategy of political survival.

You see “SORRY” has to be met with appropriate action. This is something that hearing people that serve Deaf people and people who are hard of hearing don’t seem to grasp. They do awful things to Deaf people and people who are hard of hearing, usually in the name of making money.

This group of motley hearing people drive forward in the name of the almighty dollar. Trampling on the very people that they are paid to serve. The very people that put food on their tables, pay for their expensive cars and their beachfront house. These people lack empathy and make horrendous decisions. When the people that they serve speak out, they apologise. Apologies that, as with ScoMo, are purely strategies for damage control and survival.

Let’s have a look at some of these sorry’s that have come from these organisations. Who remembers the Prawns??? My wife does,  believe me.

Image is of an attractive woman wearing prawns behind her ear. the prawns are supposed to represent hearing aids.

I wrote about the Raw Prawns in 2015. At the time Victorian Hearing had released an advertisement that depicited hearing aids as prawns.  In the advertisement an attractive female model is seen wearing prawns behind her ears. The advertisement  proclaimed that hearing aids can be ugly – OURS ARE INVISIBLE …. As a result Deaf people  and people who are hard of hearing protested at this gross negativity and insensitivity. This is what I said about the advertisement at the time –

” …The image is always one of deficit.  It is one of suffering. it is one of the victim. For whatever reason marketing people promote this idea of normalisation of disability as one where disability must never be acknowledged or seen … We have to be like them you see..”

To the credit of Victorian Hearing they saw the error of their ways. The owner publicly apologised. They were mortified that they had offended so many Deaf people and people who are hard of hearing. They immediately withdrew the advertisement. We all expected more empathy from an organisation that supposedly understands our needs. Alas!!

Many years ago there was an advertisement for the Cora Barclay Centre. The Centre is now under the Can Do Group – Formerly Townsend House. The advertisement went like this. Picture this 12 year old boy. He is staring sadly into the camera. He signs haltingly and terribly. He is clearly struggling. He can’t communicate easily and his pain and anguish is there for all to see.  The dialogue reminds us that for many years Deaf people communicated, just like this!

Suddenly, the camera cuts back to the boy. He is smiling and happy, he proclaims in what I was told was almost a sing song voice – “Now there is a better way …. ” The presumption is clear – Sign language bad – Speech good …. naturally the Deaf community were appalled and let the Cora Barclay Centre know. The Centre refused to remove the advertisement or apologise … This was absolutely the worst I have ever seen. One would hope that the Can Do Group have helped them to clean up their Act.

Then there was that bear. That bloody eyeless and earless bear that The old Royal Institute of Deaf and Blind Children (RIDBC) tried to use to raise funds and seemingly create awareness. I wrote about that awful bear in the last Rebuttal. Suffice to say shortly after printing that 2013 article the CEO of RIDBC apologised for the organisation being insensitive and having upset so many people. The campaign was apparently designed and implemented by an advertising group, basically free of charge. Nonetheless, the CEO said sorry and made sure all of the offending advertisements that featured the bear were removed.

More recently Deaf Can Do apologised for having sold the Deaf communities cultural home without the consent of the Deaf community. They did so despite strong protests from the Deaf community. In doing so they fragmented the South Australian Deaf community in such a way that it has never really recovered. The building at 262 South Terrace had been purchased and built on the back of Deaf community members. I am told the carpentry and fittings within the building, including the church, were lovingly completed by Deaf trades people.

But no matter, the building was sold anyway. It appears in recent times Deaf Can Do has seen the error of its ways. Their Executive Director has released a series of apologies for having sold the building. They have apologised for the hurt and damage that they have caused. They are now frantically trying to rebuild relationships with the Deaf community and are trying to involve the Deaf community in decisions moving forward.

Unsurprisingly, the Deaf community are very suspicious of this apology. Many see it as nothing more than a cynical ploy to attract Deaf people back to the organisation so that Deaf Can Do can make money from these individuals NDIS packages. Personally I think they are sincere.

I am told that the money that they made from the sale of 262 is being held in a trust and that Deaf Can Do want to fully involve the Deaf community in all decisions concerning the use of these funds moving forward. However, the damage has been done it will take some time to rebuild the trust that Deaf Can Do destroyed through its actions.

Today I saw yet another apology from the Royal Institute for Deaf Blind Children, now known as NextSense. Last week NextSense was launched. It took the Deaf community and other associated stakeholders by surprise. Seemingly, just like that, they wiped over 100 years of Deaf history. They launched the new brand and there were no Auslan versions explaining the brand change. We all know it happened because they are diversifying and want to tap into the enormous NDIS market for both children and adults.

The Deaf community and associated stakeholders were shocked and have been protesting loudly ever since at the shoddy treatment that they have received. So what happened? Having realised that they had largely ignored the Deaf community, who are largely responsible for the existence of the organisation anyway, having realised that they had aligned themselves with services that have traditionally rejected all use of Auslan and, I suspect, having realised that as a public relations tool the whole thing was a monumental cock up – NextSense apologised. You can see their apology at their Facebook page, because as far as I can see it is not on their website –

https://www.facebook.com/nextsenseau/videos/10158865950256893

So it is strike two for NextSense. I have little sympathy for them, given their form with that awful bear when they were then known as RIDBC. There is no way that they can excuse themselves for having left so many people in the dark when they launched the new brand. There is no way at all that they should have even thought to release the new brand without acknowledgement of the Deaf community or by producing alternate Auslan formats for their announcements.

But they did, and they are now apologising and frantically trying to add Auslan to all their announcements. Shoddy does not even begin to describe how disgracefully that they have treated the Deaf community. I, for one, am very skeptical of their apology. We all know the rebrand was about money and making as much of it as possible. Sure they need it to survive but treating the Deaf community as they have done is unforgivable.

So there you have it. A whole catalogue of Sorry’s .. Including a not sorry. Make of them what you will. For myself, I am increasingly cynical. These people should know better!!