The Rebuttal

The year is 1996. I drove for a couple of hours to meet her at her school. I was working on the National Mental Health Education Project for Young Deaf People at the time. She was 13 years old and attending a mainstream school in country Victoria. A visiting teacher supported her a few times a year. Mostly the visiting teacher worked with her classroom teachers to advise them on inclusion strategies.

I arrived at the reception and asked for her Group Teacher. The teacher was a jolly and welcoming person . It was lunchtime and the teacher led me to the quadrangle and pointed her out to me. She was sitting alone on a bench, back straight, knees together with her hands on her knees. She sat silently watching the children around her.

The teacher began to take me over to meet her. I asked for us to stand back a while. I observed her for 10 to 15 minutes. She did not move from her spot. No one sat with her. She spoke to no one, nor was she spoken to by anyone. I asked the teacher if what we were observing happened every day.  Apparently, the girl would go to the same spot every day. Eat her lunch and remain there for the duration of the break. Never interacting nor being interacted with by anyone.

Suddenly, the children began to head back to the classroom. The buzzer had gone. She had not heard the buzzer, but by observing the children around her she knew that lunch was over. She began to head back to her classroom. The teacher took me over to her and introduced me. She looked a little bit shocked, almost unprepared. With exaggerated lip movements the teacher told her that I had come to meet her and have a chat. She looked confused. I was not sure she had really understood anything that the teacher had told her. I was certain that she had no idea why I was there.

The teacher took us both to an office. She pointed to her watch and showed ten fingers three times. Fingers outstretched, fists clenched, fingers outstretched, fists clenched, fingers outstretched and then pointed to her watch. The teacher mouthed 30 minutes and pointed to the floor. Seemingly, indicating that they were to return in 30 minutes. With that she exited the office and left us alone.

The girl just looked at me wide-eyed. She looked perplexed. I pointed to myself and told her my name. “What’s your name?”. I already knew her name, but I was trying to establish a rapport. She just looked at me and did not respond. I signed slowly, “My name, G A R Y? Your name WHAT?” She slowly, and with great difficulty, misspelt her name. “M E L O N A E” which I knew meant Melanie.

I tried to have a conversation with Melanie. Do you like school? She nodded her head. “Are you happy here?” She nodded her head. “Do you like sport?”  She nodded her head. “What sport do you like?” She nodded her head. A couple more questions went in the same vein. Once she shook her head, perhaps thinking a bit of diversity would save her. I questioned her only for a short time. Her face was turning red, and she was becoming very distressed.

It became obvious to me that Melanie had severe language deprivation. She could sign a little bit but mostly this was just very simple concepts and labels. Her lipreading was minimal. She bluffed her way through communication by nodding, hoping that this would be the required response. Her way of coping most of the time was to avoid all communication. Hence, sitting on her own at lunchtime. She avoided other children and they her. In the classroom, I suspect she was just tolerated. Her isolation was extreme.

I have met many deaf kids throughout my career. They are not all like Melanie. Some are better adapted. Some have behavioural issues that result from social anxiety. Some, like Melanie, are very socially withdrawn. Many are academically delayed and not reaching their full potential. Among these students there are success stories. Nevertheless, the term mainstreaming still sends a chill down my spine as I have seen what happens to students when it does not work. Melanie is a prime example.

The common denominator for many of these students is that they are supported by visiting teachers. The visiting teachers mostly support the schools. They advise on acoustics in the classroom. They advise on hearing aid use. They advise of augmented listening and how to use it. They provide advice on inclusive strategies for deaf students. Sometimes they even have some one-on-one time with the students, but this is sporadic.  This has been my observation over the years.

The alternative for these students are learning units for deaf and hard of hearing students that are available. But if you live in the country, or if you don’t live near one of these learning units, they are not always a viable option. For many it is the mainstream or nothing. Apart from that, mainstreaming is what many parents want, they want their deaf kids in a ‘normal’ school.

Don’t get me wrong, I am not having a go at parents. Parents act on advice. Government education departments often have ‘Normalisation’ policies. Mainstreaming is largely encouraged. Sometimes it works, but when it doesn’t you can get –  well – MELANIE!

Over the years I have worked with visiting teachers. Most are wonderfully committed and dedicated to their students. But they are constrained by the fact that they are under resourced and over-utilized. There is more to education inclusion than just learning in the classroom. Those extra-curricular activities, the making of friendships, the learning from others, the constant interaction. – So many deaf students in mainstream settings miss out on this. In extreme cases you get – well – MELANIE.

So, it was with interest last week that I heard that the Victorian Government is cutting the Visiting Teacher Service. Part of me was pleased, because I have seen the damage that mainstreaming can do. I was hopeful that the Government was looking at setting up a better system. Part of me was concerned because I know that many of these visiting teachers who are being cut are extremely committed to their students and provide the best support that they possibly can. I wondered if the new support would be better or worse.

It looks to me like it is going to be worse if what The Age is saying is right. Apparently, “The proposal will reduce the number of visiting teacher jobs from 117 to 32”  That is a huge cut! Apparently, also, the remaining 32 will be known as “Inclusion outreach coaches.” AND the classroom sessions of these COACHES will be scaled back. A scary thought given that under the previous model classroom sessions were already minimal.

It looks to me that the Government is replacing an already ineffective program with a much worse one. This scares the hell out of me. Just the term Inclusion Coaches frightens me to death because my experience of school systems across Australia is that they have no clue what inclusion really means. To them inclusion is just being in the classroom. Very little thought is given to other aspects of school that include socialisation and peer learning. I can tell you now, 32 Inclusion Coaches have no hope of fixing this! EVER!

Are we about to see more Melanies??? I sincerely hope not, but I really fear that this new system will not hack it and the result will be more Melanies! Parents and educators across the state are worried. And so they should be! Let’s hope the Government rethinks this awful policy change before it is too late!

Hello, I’m a person that lives with mental health issues. My issue is depression. I’m not always depressed. It happens from time to time. I just feel down and sad. Usually I know why. It might be the stress of work. It might be the stress of life. Or it might be that someone has died. But sometimes I feel depressed and I don’t really know why. It’s a mystery.

This is the situation now. I feel depressed and sad and I can’t explain it. I like to be honest when I am depressed. I will tell my work, friends and family. When I do this, usually they want to know why. They will ask if it’s work or if it is something that they have done. There has to be a reason. But sometimes there is no answer and no obvious reason.

When you are depressed you “ruminate.” What does this mean? It means you constantly think about things. You are constantly trying to find an answer to why you are feeling like you do. You seek something to blame. The mind goes into overdrive, it wont shut up as you try to find an answer. At the moment I have been struggling to come up with a reason for my depression.

I once asked my psychologist about why I was ruminating. She told me it was common among people who are depressed. I told her I wanted my mind to be quiet. She gave me a strategy. The strategy was to focus on one thing. In my case I use photography. It might be a flower or a bee. I just focus hard on that object and take pictures. It diverts your mind and makes it be quiet.

But the mind always churns over. Well my mind does anyway. I think constantly. I want to find answers. I want to know why I am depressed. There has to be a reason as to why I am depressed. I am constantly seeking a reason. And then a couple of days ago, I think I may have come up with part of the answer.

I was binge watching the TV show, Grey’s Anatomy. I was watching the series from 2020. This was the time when the pandemic hit. The storyline’s of Greys Anatomy were about the impact on the hospital system and the people that died. One of the characters pointed out that in Seattle, where the hospital is based, only 7% of the population are black or brown. The white population makes up 93% of allpeople that reside in Seattle. Yet, of all the deaths during the pandemic over 50% were black and brown people. The character pointed out that this is systemic racism. What does that mean?

It means that’s when something like a pandemic hits, black and brown people suffer more. Why? Because many live in poverty. Many lived together in small houses meaning they got infected easily. Many had no money to afford decent nutrition. Many couldn’t afford health insurance. This meant they suffered more and died in greater numbers. They system was set up for the benefit of white people with very little thought given to the social needs of black and brown people. That’s systemic racism.

So, why has systemic racism made me depressed? It hasn’t really, but think about it. Everyday I am confronted by systemic disability discrimination. Everyday I see how it impacts on my clients. Every day I am confronted with it myself. Everyday I see its impact on my friends and family. And you know what? It’s made me tired. I am exhausted.

I have spent years successfully breaking down the barriers. But for every barrier I break down, the system brings up another. Again and again and again.

Systemic disability discrimination, what’s that? A good example is the phone. Where hearing people must ring us by voice. It doesn’t matter if you tell them to email and not call. They still call. It doesn’t matter if you say please SMS me, don’t call. They still call. Its frustrating.

And we laugh. Stupid hearing people calling Deaf people. How ridiculous. But if you are the Deaf person that misses out on a job interview because you didn’t answer a call, it’s not funny. Or the NDIS calling you about your NDIS planning meeting. When you don’t answer, they just discard you. Or more recently I have been dealing with insurance after a small car accident. They wont email, they wont SMS, they insist on calling. As a result this has progressed all the way to court! Systemic disability discrimination! Hearing people refusing to adjust, expecting us to do all the adjusting! Yes, we laugh, but it ain’t funny if you are the person that misses out on the job!

In my job I help Deaf and some blind people seek employment. Recently I had a Deaf truck driver apply for work. He couldn’t get the job because the employer had implemented a system where drivers had to wear a headset. They receive verbal instructions as to where to pick up and drop off. Of course he cannot. The same man was invited to a phone interview even though they knew he was Deaf. There is a blind man who was invited to an online interview. Only to discover that questions appeared by text on the screen and he had to answer. He got his son to come in and read the questions and tried his best to answer, he failed. It is so exasperating.

Deaf people and people with disabilities are dealing with this shit every day. It’s systemic disability discrimination. When we break down a barrier another one pops up. These systems are being designed by people who wont’ think of others. We break down one barrier and another pops up. So, I think that after 35 years I am exhausted. It’s one step forward and four steps backwards. It is so very, very frustrating.

So is that the reason that I am depressed? Probably not the full reason but it cant help. These barriers are a big part of the reason why Deaf people and people with disabilities have double the incidence of mental health issues than the general populace. Just this constant dealing with systemic barriers every day. So that might be some of the reason I am depressed. It’s not the full reason though.

But anyway here is some advise for you all. If you are feeling depressed tell your friends or tell your family. Tell someone at least. Seek help, including medical help, you do not have to do it alone!

Look after yourself.

A couple of weeks ago a well known Deaf community member asked some questions on Facebook. They asked about Deaf organisations. Is there room for so many? Is one organisation better? Or is it not a good thing that we have a lot? The questions were along these theme. I am going to explore these themes in this article. What follows are my opinions and mine alone. It must be noted that I work in the Deaf sector. I have no wish to cause any conflict. The aim of this article is simply to explore the issues and help the reader think more deeply about them. There are no right or wrongs, just options. I ‘don’t want a war!

We are now in the NDIS world. Disability organisations, including Deaf organisations, no longer have the same control of their funding. In the past they received “Block Funding” from Governments. The Government would give them X amount of dollars to deliver agreed services. For this money (that was never enough by the way), organisations would agree to support X number of clients per year, covering X amount of hours and delivering an agreed number of supports. For Deaf organisations, that might be recreation, interpreting, counselling, case management, youth groups and so on.

In this “Block Funding” world organisations had an enormous amount of power. The organisations, usually led by non-disabled people, decided who, what, where and how services would be delivered. Many disabled people got nothing because the services that were delivered were not relevant to them. Others got a lot but how much they got was generally dictated by the disability organisation, the size of its “Block Funding” and its success in fundraising. Ethics, humanity, dignity etc, were words that one struggled to use in a sentence in this world of fundraising. But I digress.

The NDIS changed all of this. Disability organisations lost most of their “Block Funding”. There were still grants that they could apply for, but once the NDIS was introduced millions and millions of dollars that were once allocated in “Block Funding” were lost. Instead, it went directly to consumers who, in theory, decided where they would spend this money. They “Self Directed” their funds.

What has this meant for Deaf organisations who had traditionally “Looked After” the Deaf Community? For a start it has meant that they lost millions of dollars in funding. This funding was traditionally and mostly provided by State Governments. Across Australia the amount of this funding was very different depending on the policies and decisions made by the particular State Government. Big states like NSW and Victoria generally received a lot more funding because of the relative wealth and demand in these bigger States. Smaller states often, in comparison, received a pittance. It was not an equal world.

The NDIS changed all of this. Now funding was delivered equally and directly to the consumer and right across Australia. There are some who will argue that the funding allocation to people with a disability is actually inconsistent and unfair. That is a whole other article.

After the NDIS was introduced the problem was that in some of these smaller states the services on offer from Deaf organisations were minimal. It’s fair to say that in the early days of the NDIS, many Deaf people received all this money for supports but, depending on where they lived, they had very little choice of supports. Why? Well, because many of the traditional service providers were too small to deliver the services on the scale that was needed.

What happened when the NDIS was introduced was really complex. But in a nutshell, people with a disability had more control and could decide where they wanted to spend their NDIS support money. Of course, the money had to be spent on support for disability but no longer was there an all powerful service provider who decided who got the support and when. And more significantly, to survive these service providers, who now no longer had the “Block Funding”, had to convince people with a disability that they were the best organisation to support them. ME! ME! Pick ME! It was bit like that.

So it became a bit of a war between service providers. It became a bit like Coles vs Woolies. In the Deaf Sector providers were offering interpreting, Auslan support, support work, audiology, technology, support coordination and so on. But now Deaf people who controlled their own support dollars could choose which service provider that they wanted. If you were in Victoria, you could use a support provider in NSW if you wanted, just as long as that support provider could provide you with what you needed.

In the Coles and Woolies vein, some of these service providers started to try and control the market. Seeing that there was a profit to be made, they set up shop in other states and began to offer services. In the early days of the NDIS, there really wasn’t much choice for the Deaf community, apart from the old locally based Deaf Society. But as the NDIS grew, so did the number of service providers.

I wouldn’t say it was a plethora of options but it certainly was a lot more than what was on offer in the past. The old community based, welfare model that had controlled the Deaf community in the past was no more. Suddenly, it became a big business where these service providers had to convince us Deaf people that they were the best and that we should use them! What is more, small private businesses were established. These businesses were often set up by Deaf people themselves. It was almost a war, where to survive service providers had to convince Deaf people that the services that they were offering were the best!

WAR, WAR, what’s it good for? Well, it’s certainly good for choice. It’s certainly means that Deaf people rather than Deaf organisations are more in control of where their funding dollar goes. It certainly created more demand for interpreting which all of these service providers combined are finding hard to meet. It has certainly created challenges for service providers to survive; they either convince us to use them or they sink.

For me, one of the things that I think has been lost is the spirit of cooperation. I am a bit old school. I remember the times when Deaf Societies cooperated with each other. They lobbied together for a common good. They combined to host conferences and assist the Deaf community to address the issues of inequality that they were facing. They provided a community base for the Deaf community. A base where the Deaf community felt safe and at home. A lot of this spirit of cooperation has been lost and that’s sad.

Would one service provider be good? One organisation servicing the whole of the Deaf community all over Australia? One service provider controlled by Deaf people? One service provider using its profits to support advocacy based organisations like national and state based advocacy? One service provider using its profits to provide Deaf clubs and a safe community base for the Deaf community? One Service provider has many benefits but It would be a monopoly of sorts. This in turn could limit the choices of Deaf people.

OR – Lots of service providers offering services and supports? Offering value for money to entice the consumer? Offering choice to the Deaf community so that their NDIS dollar is used effectively? Choice and competition ensuring the the Deaf community get high quality and diverse choices? BUT, lots of organisations competing against each other for the almighty dollar and less emphasis on providing for a strong Deaf community. A survival of the fittest model, so to speak! Pros and cons, pros and cons!

OR – A combination of the above, where there is cooperation and where the needs of the Deaf community are put first? A model that recognises that there is room for multiple organisations that offer quality supports and who put the Deaf community at its centre. Organisations that find common ground despite the competitive world in which they exist. BUT, in this competitive and survival of the fittest environment, would this be possible?

Or – Perhaps I am just a dreamer. An old man from a past era who is struggling to keep up with the change. Highly possible and highly probable. But that tune continues to ring in my head;

War, huh, yeah
What is it good for?
Absolutely nothing, uhh
War, huh, yeah
What is it good for?
Absolutely nothing
Say it again, y’all
War, huh (good God)
What is it good for?
Absolutely nothing, listen to me, oh

Maybe it is time to take stock.

Or for me to go out to pasture!

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Writing this I am on a hiding to nothing. It’s going to hurt some people. It’s going to shock some people. Some will even get angry. Friends, work colleagues and people in my networks, they are all going to find this a wee bit confronting. Nay, very confronting. But I am going to do it anyway. Come what may, just remember these views are mine and mine alone.

Last week a video of a very angry Deaf woman popped up on my Facebook feed. I wanted to post the video here but it has now been deleted. The woman in the video was besides herself. She described how, when she is with Deaf friends signing and hearing friends are present, she makes sure that the hearing friends know exactly what her Deaf friends are talking about. In short, she does everything in her power to include her hearing friends.

Her anger in the video is palpable. She described what happens when she is out with her hearing friends. The hearing friends all talk at rapid pace. She, of course, cannot follow. When she asks her hearing friends what people are talking about all she gets is a ten second summary. Her friends may have been talking for half an hour and all she gets is a ten second summary. Or worse, her hearing friends tell her that they are just talking rubbish and she really would not want to know.

In the video the woman’s face is red. He eyes are bulging. She gesticulates and even screams, She expresses her extreme frustration at being excluded in this way. She asks why she must always be the one making the effort while her hearing friends always exclude her with ten second summaries or simply by dismissing her queries altogether. As the video ends she pulls her hair, her eyes bulge and she screams. If you are Deaf, you can empathise , we have all been there.

We all hate it too. We hate those hearing gatherings where we cannot follow conversations. We hate those gatherings when all are chatting animatedly, laughing rancorously and we have no idea what is going on. We hate missing the jokes. We squirm as a kind hearing person in the gathering tries their best to include us with a ten second summary. We bottle our anger as we are told that it’s not important or that they will tell us later. It hurts.

If I am with Deaf friends, because I know what it is like to be excluded, I interpret for my hearing friends and colleagues so that they do not feel left out. I stop our conversations to let the hearing people that cannot sign know what we are talking about. When someone laughs, I tell them why we are laughing. I do this because I know the pain of exclusion and no one should have to deal with that – NO ONE! I like to think that there are many Deaf people who do this as I do.

And then we walk into a room – maybe at our football club, perhaps at work or at some family gathering where everyone is hearing, the hearing look at us, nod and carry on with their conversations. We get a tidbit here and there –“Just talking about Sandy’s new haircut.”, “Pete broke up with Kate last night.” – Or the dreaded, ” Don’t worry, they are all talking rubbish.” We smile, we nod and sometimes we get the hell out rather than have to deal with the exclusion. More often, we just find a quiet place and sit alone. Externally we look fine but internally we are seething and incredibly uncomfortable because of the exclusion that we are experiencing.

And we are always adapting. Always changing. Always adjusting to please the hearing people. We are Deaf, we can’t monitor our voices as well as hearing people. We are incredibly conscious that we might be too noisy for where we are. We are often told to SHHHHHH or given funny looks to let us know that we are embarrassing our hearing peers. Some of us are too frightened to even speak lest our voices carry too far and interfere with the conversation of our hearing peers. We all live with a certain amount of paranoia. Ironically, and often, when we try to lower our voices we get, “Speak up, you’re whispering..”

Nearly always we are adjusting and adapting. In recent years I have started using voice to text technology to follow conversations. It’s funny because the hearing folk seem to forget that we can now HEAR them and they say odd things like, “Don’t tell Gary that, it will piss him off …”. Completely unaware that the technology has picked up what they have just said.

At work we do a lot of meetings by Teams. I use the voice to text technology for captioning, its very accurate. Occasionally I am in an environment where there is lots of background noise. The noise interferes with the captioning. Do I ask hearing people making the noise to be more quiet? No, I turn off my microphone so that the noise that they make does not interfere. Then I often speak and forget to turn the microphone back on so that no-one can hear me. Me adapting, ALWAYS!

Yet, should a Deaf person speak and be too loud, what is the response? “SHHHHHHH, we are in a meeting, you are interrupting … tone it down!” Yup, its always us! We are the problem. Forever having to be aware of ourselves and modify ourselves to fit in with this hearing world.

Mind you, none of this beats the guy that told my work mates to be careful. You see I would turn on my Microsoft Group Transcribe so I could get an inkling of what my work mates were discussing. I am reliably informed he told my workmates to be careful what they said because “I WAS LISTENING”. It is just not on for us Deafies to know what hearing people take for granted everyday; is it?

So to the woman that made the video, I hear you! (Pun intended) For you hearing people expecting us and me to do all the adjusting – Well, I can count myself lucky I do not have any hair to pull out – But the screaming, yeah I think I may just do a bit more of that.

2013 was a big year for disability. It was the year that the NDIS was introduced. It offered so much hope for people with a disability. Before that time people with physical disabilities that needed support, just to get out of bed in the morning, might be lucky to get that support twice a week. They didn’t stay in bed all week, no, in the times that they did not have support, family members or friends helped them out.

The NDIS was also set up for those family members. These carers who the NDIS like to call “informal supports.” It was not uncommon, it still isn’t, that parents of people with a disability cared for their disabled child even when they were elderly. By this I mean a parent might be 80 years old and still be caring for their disabled ‘child’ who might now be over 60 years old. A lifelong commitment based on love.

For my cohort, Deaf and hard of hearing, the NDIS provides funding to support them with communication. The NDIS has meant that thousands of people who are Deaf or hard of hearing now have funding access for interpreters or captioning. They can attend parties with hearing people and fund interpreters for that. They can go to funerals and get access to the speeches. They can go to their bank and talk home loans with the lender using paid for communication support. I know of one deaf person who is assistant treasurer at her local Lions Club, interpreters paid for by the NDIS so that she can participate in meetings. The NDIS has opened many doors for people who are Deaf or hard of hearing.

In my own family my son is stepfather to a disabled child. The child requires technology and support workers. He needs therapy too. The NDIS helps provide this therapy and support. Later My son and his partner may need modifications to their home or even their car so that their son can be more independent and participate in the community. The NDIS is helping now and will in the future.

Perhaps later, because this support is provided, it will allow my son and his partner to both be able to work and the taxes they pay will contribute to the economy. Even now their son is providing employment for support workers, physiotherapists, speech therapist and so on. These support people will allow their son to become more independent and to be able to participate in our community. While they are providing this support these support people are getting income to pay their bills as well.

There is no question in my mind that the NDIS is a great program. It is helping countless people who previously had very limited support and were often severely restricted in what they could do. Is it perfect? No! But its bloody good and I am thankful that we have it in Australia.

It irks me that these good news stories get very little coverage. Instead the focus is on cost, fraud, cock ups and bureaucracy. Just today The Australian screams “Autism will cost Australia $8.5 billion”. Two days ago Premier Palaszczuk wanted to shirk her States responsibility to support disability. “It’s a national scheme, not a state scheme .. “, she bemoaned. Premier Andrews in Victoria is apparently in the same boat. Phil Coorey, in a long rambling piece in the Financial Review, bemoans the cost, the ever increasing cost. I am so depressed that I and many of my disabled colleagues are seen as such a burden on the country.

As all these people moan about the cost, there are very few stories about how the NDIS is changing lives. There are no stories about the thousands, upon thousands of people that owe their livelihoods to the NDIS. There are no stories about how the NDIS is contributing to the fabric of Australia, both economically and socially. Instead, all people talk about is the ‘burden’ the scheme is on the country. They pull their hair out and exclaim the scheme is growing too fast. Or, like Palaszczuk, they try to shirk their responsibilities and lay the bulk the responsibility on the Commonwealth. Something is not right here.

Minister Bill Shorten says the Scheme has lost its way. He at least talks about the positive outcomes and the value of the Scheme to the country. In an address to the National Press Club on 18th April he had this to say,

….. the NDIS has not only changed those lives but that every state, territory and community benefitted socially and economically from the scheme.

As NDIA reported last year, for every dollar invested in the NDIS, it’s delivering a $2.25 return to the economy. If only all government interventions or private businesses can boast this outcome.“

Think of that. An expenditure of $34 billion has generated $76.5 billion in economic activity for Australia.

I have some strong views as to why the NDIS has lost its way? I feel strongly that a large part of the reason that the NDIS has lost its way is because too many NDIS people responsible for planning and decision making have no background in disability and little understanding of the people that they support. Shorten seems to have acknowledged this in his six point plan where he highlights the need to, ” …to increase the NDIS workforce and SPECIALISATION.”

This cannot come soon enough. Hand on heart I can tell you that a delegate once declined interpreting for a deaf client because, as they suggested, “… they can carry post it notes with them and communicate by writing.” Yes, this is an extreme case but is an example of the end result of employing people with no experience or specialisation. This leads to crap plans, leads to appeals, legal fees and time wasted on providing support to deal with appeals. What was the last figure I saw that the NDIS paid in legal fees for appeals? $28 million I think. Not to mention the re-planning and the administrative costs. Worst, the unnecessary stress it causes people with a disability.

Without doubt, the workforce must change, it needs people that know what they are doing. Wouldn’t it be great if the NDIS has specialist units that focus on specific disabilities like autism or Deaf/hard of hearing. Staffed by people with lived experience and people that know and understand their cohort. In my mind this will ensure planning reflects needs and will prevent many of the costly appeals that occur.

Shorten has a six point plan with the focus being on improving processes efficiencies and cutting down on mismanagement and fraud. All well and good. But none of this will work if their is no focus on cleaning up how decisions are made and ensuring consistency in decision making.

There certainly needs to be a greater emphasis on recognising the input of informal supports. Honestly, the number of NDIS delegates who refuse supports because they say it is ‘parental responsibility’ or that it is, “… the role of informal supports.” is a scandal.

Yeah, like funding support so a child can attend after school care so their parents can work. After school care do not fund the extra support that for thangs that might be needed like personal care or behavioural management. All these things are a cost of disability and therefore covered by the NDIS. The number of times I saw this request for support denied for after school care because the NDIS claimed it was parents responsibility or the State Governments responsibility made my blood boil. Or denying a person vehicle modifications because they have a wife who can drive them. It happened, it really did!

And then, of course, NDIS delegates often try to fob of NDIS responsibilities to the States because they do not understand what cost of disability means. So many times delegates told me that peg feeding was a State medical responsibility. It isn’t! If a disabled child cannot eat orally because of their disability and needs peg feeding, that is a cost of disability. Or the person who has breathing difficulties because of their disability who needs a CPAP machine, that also is a cost of disability. The NDIS needs to understand ‘COST OF DISABILITY‘ and stop trying to fob these types of support needs off to the States.

Yes, the NDIS has lost its way. I am thankful that Shorten and the Labor Government are trying to help it find its way again. I am thankful, particularly, that Shorten has publicly acknowledged the massive economic and social impact that the NDIS has for Australia. We hear too little about this.

As for those journalist and commentators that want to only focus on financial outgoings, I suggest that they all educate themselves. I suggest that the media start to use responsible journalism and really highlight the positive outcomes and the positive impact of the scheme. And if they cant do that, just shut up!!

Here is hoping that Shorten and the Labor Government can get scheme back on track! The NDIS is very much needed!

SCROLL TO BOTTOM FOR AUSLAN TRANSLATION.

Happy Easter everyone. I know that some of The Rebuttal readers may not celebrate Easter. I am a confirmed agnostic. I have my mind open to all possibilities. That said my values are very Christian and I observe Easter. Even if I was a Christian, I would be welcoming all and sundry, faith or non faith, to celebrate with me. I would hope they would welcome me to observe religious times of significance with them too. It is this sort of respect and tolerance our world is sadly lacking.

I am actually quite excited to write this. Firstly, because I have set up my laptop so that I have three screens. What I am doing is writing this then translating it to Auslan when I finish. On one screen I have the blog which I am typing. On another I have camera set up so I can translate paragraph by paragraph. On a third I have Sign Bank to check signs that I don’t know because my Auslan is so lousy. Sadly, Sign Bank doesn’t have any signs for religions outside of the big three so I have had to resort to using “Different Religion” and Non Religion”.

But I digress, this Rebuttal is to celebrate. Because the Deaf community have had a win this week. It’s a win for both Deaf and hard of hearing people. It is a win that is long overdue. It has been nearly two decades in coming, but finally it is here. This may be a bit cheeky but I am going to claim some credit, along with my manager, for it happening. Just some.

In an Easter Miracle, the Federal Government has finally increased the Employment Assistant Fund for Auslan and captioning at work. For years it has stayed at $6 000 per year. For everyone, no matter what they worked as or where they lived. It was wonderful when introduced. But after nearly two decades that $6 000 has become horrendously inadequate. Two days ago we heard that it had been increased. In fact it has been doubled to $12 000. HOOOORAY!!!!

Now, why am I claiming some credit? Well, when I worked as a National Disability Coordination Officer, as I did over 14 years, I went to many a consultation about access to employment. Without fail I would always bring up the issue of EAF. In my current role as manager of a DES service I am in contact with the Government regularly and letting them know of the inadequacy of the old $6 000 Auslan for Employment. Myself and my manager have been quite vocal about it. I would like to think we played a small part in getting the increase.

I am sure there are others who have done the same. The old level was just ridiculous. I have said this before, but when I worked in the NDIS my interpreting bill, along with another deaf colleague, was $84 000. That was just for 9 months. I used both Auslan interpreters and live captioning. To be quite frank, the $6 000 was expounded in the first four weeks where it was spent on my induction training.

There are other professionals like me who have similarly high needs when it comes to communication access. I have always been lucky that my employer has been willing to foot the cost. Not so many other employers. Small business just cannot be expected to be able to wear the extraordinary high cost. They need assistance from the Government to be able to employ Deaf and hard of hearing people and meet that cost of communication access. The $6 000 just did not hack it.

Over in the UK, where my wife has just landed, they provide communication support at a much higher level. I am not sure how it works but I believe a Deaf or hard of hearing person can claim up to 53 000 pounds. (Sorry my keyboard doesn’t have the pound symbol) That’s $98 732 Australian. I think in the UK they work out the level dependent on your duties and employment level. Don’t quote me on that, but I would be interested to hear how they work it out over there.

If you compare the UK with Australia the new $12 000 looks pretty puny in comparison, doesn’t it? At this point in time, I don’t care. We need to celebrate our wins, because these wins are all to few and far apart.

So well done us on getting this increase. Well done all those people who, like me, took every opportunity to tell the Government that Auslan/captioning for employment needed to be improved. Getting it doubled is a tremendous achievement! Take a bow everyone!

That said, its still not enough. But that’s a fight that can start next week. Yay US!!!!!!!

Happy Easter everyone – And I mean everyone!!

Last weeks REBUTTAL certainly hit a few raw nerves, particularly among our interpreters and even ex interpreters. Several have posted on my social media or gotten in touch with me to express their frustrations. Some of them are CODAs who have been in similar situations such as Claudia described in the article. Others just shared their own stories of working with the health system. I could come to only one conclusion, access to the health system for people who are Deaf and hard of hearing in Australia is broken. If it was ever working.

In the past, the Deaf and hard of hearing communities have had a number of advocacy challenges and confronted them head on. Telecommunications, captioning, interpreter access; these are just a few. Our Deaf and hard of hearing communities have had great success in these areas. The next great challenge is improving access to the health system. It is long overdue and it will be a long hard battle. The examples I present here demonstrate why it is such a priority.

The following quotes were posted on my Linkedin account in response to last weeks Rebuttal. The quotes paint a vivid picture of what people who are Deaf or hard of hearing, their families and interpreters are confronting every day as they try to access Australia’s health system.

“It is a disgrace. Many times I’ve had to interpret for my Mum when she was very ill at ED. It’s a rock and a hard place as a child of deaf parents, you just have to step up when interpreters are N/A. Unfortunately in regional centres the situation is much worse. VRI has helped but usually it’s “broken” “we can’t find it” “no one is available anyway” or “can’t you just do it”

And this:

“As I write this comment, I am actually afraid to share – but it is partly this constant disregard for the Deaf that influenced my decision to stop interpreting as my main employment. I know if all interpreters made this decision, it would be so much worse – but after so many years of watching the abuse, and advocating as best I could, and experiencing vicarious trauma through it, I couldn’t take it anymore. I would come home so angry and would stay worked up for days. And of course, when I saw it happening with my family it was worse. And it was only third party for me; I wasn’t even the Deaf person experiencing it. I can only imagine what it must be like, so constantly encountering it.

There were other factors in my decision as well, but this was definitely one of them.“

The stories of these two interpreters are examples of what happens to people who are Deaf and hard of hearing everyday as they try to access Australia’s health system. What follows is a story shared with me by an interpreter. They have provided me with permission to share on the condition that they remain anonymous. Something has to change, and soon!

This story happened several years ago. I was booked to do a regular job with a client and had been working with them for months. One day, unfortunately, the client became very unwell and an ambulance had to be called. I agreed to go in the ambulance with them so that the paramedics could communicate with the client. On the journey in the ambulance I begged the paramedics to call forward for a health care interpreter. At the time I felt I did not have the skills to interpret medical scenarios and felt ethically challenged.

Of course, they didn’t do as I asked. On arrival I interpreted between the deaf client and the staff. I made it very clear, again, that they needed to book a health care interpreter. As I said, I felt ethically challenged and also felt I did not have the skills at the time to interpret to the level required.

Instead of booking an interpreter, the hospital contacted a relative of the deaf person. I presume that they had these contact details on file. I do not recall interpreting any questions around contacting any relatives.

After a time the person’s relative arrived. I, and the deaf client, had made it very clear that a qualified Auslan interpreter who had experience interpreting in the health system was essential. As the deaf client and myself were arguing the case for an interpreter, the relative stood between me and the deaf client so that the client could no longer see and communicate with me.

The deaf client was very unwell. Despite this they persisted, along with myself, to request a qualified health care interpreter. Their pleas were ignored.

The hospital simply refused to book an interpreter. I was made to leave and the client was forced to communicate with the medical professionals without support, apart from minimal assistance from the relative, who had no Auslan skills.

In the end the deaf client gave in. They later confessed to me that when discharged they were still unclear as to what was wrong with them or the purpose of the treatment that had been prescribed. At the time what happened to the client was completely contradictory to our States health policy, as it is now.

Honestly, I wish now that I had made a formal complaint to the hospital. I did not because I thought that it was up to the deaf person to do that. Looking back, they were in no position to make a complaint, they were very unwell. The client expressed to me later their extreme frustration and fear about not knowing what was happening. The anger and trauma that they experienced, particularly because they had no idea what was going on, remains with the client, and indeed myself, to this day!

This is Australia’s health system today. This is what many Deaf and hard of hearing people are experiencing. Something has got to give. As I said, it is the next big challenge for advocates of the Deaf and hard of hearing communities. Can they meet the challenge?

Please scroll to bottom for Auslan translation:

Carmela popped up on my screen last week. Carmela and I were once very good friends. We met at 262 after she had returned from living in Melbourne for a few years. She had a unit that she had rented from the Deaf Society. All she had was a bed, fridge and TV in the unit. One day I took my bean bag to university and carried it around all day. I even sat on it during lectures. I didn’t have a licence at the time so I took the bean bag on the bus with me. I hauled it all around the university, caught a bus to Carmella’s home and delivered it to her. It was worth it, she at least had somewhere to sit.

This was in 1987 I think. The photo that popped up on my screen was of Carmela with her husband and first grandchild. I never got to meet her husband or grandchild. Over the years we had drifted apart. Caught up in our own lives. We found each other again some years ago, on Facebook of course. She would often comment on my photos of flowers. She knew the names of many flowers and would tell me what they were. I used to joke that the technical term for the flower was, “Pink Pretty Flowers.” (Replace pink with whatever colour the flower was at the time.)

We lived not far from each other in Adelaide. We kept saying that we would catch up for coffee but life got in the way. Carmela passed away from cancer in 2021. I was devastated. I hadn’t even known that she was ill. I was later to find out that she had fought cancer for 10 years. It hit me quite hard. It made me realise that I needed to value friends and acquaintances more. Because in a shot they could be gone.

The photo in question was on her daughters business website, Her daughter, Claudia, is the CEO and founder of Anytime Auslan, She is a fabulous interpreter and I have been lucky to have her interpret for me on occasion when I worked in the NDIS space. Claudia had written an article about Carmela’s struggle with the health system in South Australia as she fought her cancer. Specifically, around access to Auslan interpreters. This inspired me to write this third article in the Deja Vu series. I don’t mind telling you all that I am a bit teary as I write it. Please read Claudia’s article, it is essential reading – CLICK HERE TO READ

I am struggling to put into words about how I feel. I just cannot fathom having to be the one who has to interpret that ones mum is dying to her Deaf dad. What is more harrowing is that Claudia, this grieving daughter and incredible human being, had to interpret the doctors words that her mother was dying TO HER MOTHER. This makes me sad, horrified and furious all at the same time. The below is what Claudia had to endure:

“The doctor then asks to speak with mum. I go into mum’s room with the doctor, she has just woken up. The doctor sits down and says to mum “I just want to let you know that we have tried everything to help, so we have just told your husband and children that we think there is only a few more days, so it’s time to ask all your loved ones to come and say their goodbyes”. She doesn’t respond, the doctor repeats himself and says, “We are really sorry we couldn’t help; nothing seems to be working, we think you may die.” She is the most unresponsive that I have ever seen her, and she doesn’t say much back. Now it was a waiting game, to see whether she was sick with an infection or if the cancer had spread.” 

Just sit back and allow that to sink in. You, the daughter/son, have to tell your mum that she is about to die. You’re already struggling with you’re own grief and own emotions. You have to be the one to make sure your mum understands that she is about to die. Let the true magnitude of this sink in! And why has this situation arisen? Because our health system, despite the fact that it is legislated to do so, wont make the effort to book and pay for an Auslan interpreter. Simple and essential communication access that they will not provide.

Carmela survived, by the way, and lived for a few more years. But this was what she had to endure for ten years as she fought her illness. It is beyond appalling. That Claudia was the one, along with her brother, who had to fill in the gaps that the health system would not provide, that is a scandal. This makes me beyond angry. I do understand there are other factors such as unavailability of interpreters because of high demand. I also understand that many interpreters will avoid palliative care work as they find it too difficult emotionally to deal with. Even so, what Claudia, Carmela and their family had to endure should not be allowed to happen.

In 2013 I was admitted to hospital with severe abdominal pains. In emergency I was seen by an Asian doctor with a strong accent who I could not understand. On being admitted I had told the reception that I needed an interpreter. They refused to book me one. I told the Asian doctor that I needed one. I asked him to write notes until I could get one. He ignored me completely and refused to even write. I was in Sydney at the time for a work meeting, not home in Melbourne.

Instead, this idiot resorted to mime and gesture to ask me if I had had a bowel movement. He mimed sitting on the toilet whilst grimacing at the same time. He bent over and put his hand to his bum and made finger movements as if there was an explosion coming out of his bum. Of course, I knew what he was asking but I refused to acknowledge that I had understood. Even in my severe pain I was angry that I was being infantalised in this way. I refused to cooperate.

As it turned out, I needed my gall bladder removed. I was not to find this out until more than 24 hours later. They had tried to tell me but I had not understood. 24 hours later they sent in the specialist who explained it to me in writing. The specialist was Asian too, and I couldn’t lipread him either. I was to be in hospital for a further two weeks due to complications. I was lucky that friends helped me out because I arrived in Sydney with only a spare pair of underpants.

On my discharge day, they booked an interpreter. At that meeting I found out that my gall bladder had been sent for a biopsy and it had come back clear. I had had no idea that my gall bladder was sent for a biopsy. It came as a bit of a shock to me that it might have been more serious than just a gall bladder removal. They might have told me, but I had probably not understood them. This is what deaf people are still experiencing in the health system all around Australia today. They are missing vital information.

Back in 2015 I received a frantic message from a deaf friend. My deaf friend had self admitted after a mental health episode. The friend had been at the hospital emergency and was trying to get the emergency department to book an interpreter. They apparently had rung the after hours line for interpreting services but got an answering machine that advised them to call back after 8 am the next day. They communicated all this to my friend in writing.

My friend was in a panic. I have no doubt that part of this panic was the result of traumatic experiences with the health system in the past. My friend was apparently on a bed and refusing to communicate with doctors and nurses until they got an interpreter. They were writing notes to my friend who does not have strong English literacy. My friend was refusing to read these. I located a qualified interpreter who was willing to attend the hospital and interpret for my friend. The friend was admitted that night.

The psychiatrist was visiting in the morning. My friend made it very clear an interpreter was needed. She was promised one but an interpreter was never booked. Next morning the psychiatrist visited. No interpreter was present so my friend was again refusing to communicate. During the visit the psychiatrist tried writing notes on paper. My friend balled them up and threw them away. Cooperation would not be forthcoming until an interpreter was present. All through this my friend communicated with me on Messenger. My friend took a photo of the psychiatrist and sent it to me. He had been standing at the door with his arms folded across his chest. Refusing to leave until my friend cooperated.

To cut a long story short, I eventually attended the hospital to advocate for my friend. The hospital agreed to book interpreters for all future sessions and did. But the trauma that my friend experienced as a result of their experience was just shocking and it should not occur. At this entry point of the health system, the emergency department, clear and concise communication for accurate diagnosis and treatment is crucial. Bear in mind I assisted my friend entirely voluntarily as there was no one that they could turn to for help at the time. I traveled 150 kms for seven days in a row to assist them. I am not sure it would be all that different for them today.

So as you can see, Claudia’s story about her experience with her mum was deja vu for me. In 2023, deaf people are still experiencing this every day. I can forgive the fact that demand for interpreters is high, and sometimes this demand cannot be met but this is not the issue here. The issue is that too many hospitals are refusing to comply and even try to book interpreters.

It’s not good enough. Thank you Claudia for sharing your very personal story and allowing me to use that poignant picture of your mum and dad with their first grandchild. I hope that, moving forward, stories like yours and your mum will help to change the system for the better. That would be a fitting legacy for Carmela!

Please scroll to the bottom for the Auslan Version.

Happy Hearing Awareness Week! I hope that is what it is called. We have had so many name changes over the years that I have lost count. But this week is a week of hearing awareness. It’s a week when hearing people celebrate being hearing and let us know that even if we can’t hear, there is hope!! Can Do Hearing proudly proclaim …

“The empathy and compassion promoted by Hearing Awareness Week, generally leads (each year) to an increased sensitivity to the experiences, needs, and aspirations of people with hearing loss.”

Experiences, needs and aspirations of people with hearing loss. There you have it. I am assuming this mean all types, including those in the Deaf community that use Auslan. Or even those who are perhaps not fully involved in the Deaf community but use Auslan. Or little kids, whose parents have chosen Auslan as part of their child’s language development. And of course those that can’t hear, or can’t hear well, and who don’t use Auslan. All of them is what Hearing Awareness week is about and their – “… Experiences, needs and aspirations.” ALL OF THEM!

So this week people in Brisbane driving across the Story Bridge were exposed to this. No doubt a campaign that is linked to Hearing Awareness Week:

OK! Now before I go on I will disclose that I work in the deafness sector. I want to point out that the views that I am about to express are entirely my own. As a Deaf person who lives and breathes being deaf and supporting a diverse range of people with a hearing loss everyday, I am exercising my right to comment on issues that are important to me. That said, these views are my own entirely.

I need to clarify the banner. It is misleading. Firstly it says that deaf kids can hear. Some can but need assistance through aids or cochlear implants. Even with these aids, they hear to varying degrees. It is the same with speech. Some speak just lovely, while others struggle a bit. Some have great language development and others less so. It varies. ALSO deaf can sign too. Again, with varying success depending on lots of factors and access to language models. It is not black and white for any of these “…kids who are deaf …”

May be the banner needs to have the word SOME in it. It definitely needs the words Auslan in it. It definitely needs reporting to the Advertising, Competition and Consumer Commission. Why? Because it is terribly misleading and manipulative. I am actually gobsmacked that it was approved for release. The banner is incredibly damaging.

The reader will have garnered by now that I am a bit angry about the banner. I know I am not the only one because several people have brought the banner to my attention. Possibly in the hope that I would write something about it. With stuff like this, I really do not need a lot of prompting.

It frustrates me because there is a history of this sort of advertising in the last 20 years. Many deaf people, like me, protest about it. They are always ignored and always disrespected. For some, it is disparaging of the identity that they have chosen. Imagine the outrage today if some racially focused group put out an advertisement – “Black people can be white.” Or some homophobic organisation splashed a banner across the Sydney Harbor Bridge focused on the LBGTQIA+ community – “Gay people can be straight.” Yes, I am being extreme, but this is how many in the Deaf community feel about this sort of advertising.

I, and many others, want this sort of misleading advertising to stop. But always we are ignored. Our views are brushed off and we are all considered extremist. We are not. We just see the damage this kind of advertising does to many people who are deaf. It demeans them and tells the world that being deaf is a lesser state of being. I ask the people responsible for this harmful advertising to please stop. JUST PLEASE STOP!

You know, I have witnessed some howlers in my time. There was the lad that was filmed using appalling sign language. His sign language is captioned in the video along the lines of this – “In years gone by this is how people like me communicated …” – he then breaks into speech in what I was told at the time was almost in a sing song manner – “… But now there is a better way”. It is all true; you can read about it in an old Rebuttal HERE.

This was 2008. Yup, we were complaining about this sort of stuff way back then. No one has listened. One of the worst advertisements I saw was of the identical twin sisters, one who was deaf. It was not captioned at the time and I had to get a hearing colleague to transcribe it for me. (Thanks Nic!) This is how it went …

” My sister Maddie and I are identical twins. Except that she was born completely Deaf, and I was not. The Hear AND Say Centre for Deaf children helped kids like Maddie to hear and to speak just like me so that they can communicate to the world with confidence like everyone else. And you will be surprised just how much they have helped Maddie.

The other girls talk: – You are Maddie, silly!!!”

Read it slowly and carefully, and let it sink in. You can read this old article HERE.

It is true that this type of advertising offends the Deaf community. But what is worse is that it is incredibly misleading. It gives parents hope, not necessarily a false hope, but it makes them think that hearing and speaking is EVERYTHING. It makes them think that DEAFNESS is an unfathomable tragedy that needs to be eradicated. It means that from diagnosis, parents are seeing their kids as deficit and needing to be fixed. This is the real tragedy because no parent should be starting their relationship with their child with this type of messaging.

The Foundation of Divergent Minds had this to say about the focus on deficit – ” .. When a child is Deaf, in this model, they are disabled because they cannot hear, not because of society.  This model, which is prevalent in schools and therapeutic settings, is a structure that upholds the typical, and places all responsibility for struggle on the individual and their distance from the norm.” (Click on the quote to read the full article.)

And this is what this sort of advertising does. Apart from being disgracefully misleading, it blames the deaf kids. It says that unless they become like the hearing they are not with us. It tells parents of deaf kids that their deaf kids are a problem that need fixing so they can fit with the norm. And worse, it absolves society of any responsibility because – “All deaf kids can hear and speak.” You see?

To the people that continue with this damaging advertising can I just ask – PLEASE, PLEASE STOP!!

Auslan version below.