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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 or 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.

I have been deaf now for nigh on 50 years. I was not born deaf so have the privilege of speech. In addition to this I have a strong language base. Note the word privilege. My life may well have been different had I been born deaf. Perhaps I would have had no access to Auslan until my late teens. Perhaps for many years I would have struggled to express myself in the hearing world that I existed. Perhaps my language development, literacy and education could have been impacted. There are many things that could have happened, so I consider myself privileged.

Now that word “privileged” is not used in a good way here. I mean it in a way that indicates that I have rights and advantages over others. This is wrong. I am a firm believer that everyone should have the same access to everything. Be it education, housing, employment – No one should have ‘privilege’ over others. Alas, in our society privilege is everywhere. It’s ugly. We must tackle privilege head on everyday.

My 35 year career has been about fighting unfair privilege. It’s tough and the fight makes me angry, really angry. I have very low tolerance for people that are privileged who make themselves out as victims. I have a very low tolerance for people who are privileged who try to tell me how I should live life as a deaf person. This low tolerance is what has kept me going in the disability sector for 35 years.

You would think that by now I would have got used to it. You would think that I would just retreat into a hole and say, “That’s just the way it is … “ But no, I still get angry. I live and breathe this shit everyday. When I stop getting angry, I will know it will be time to retire.

Yesterday, late in the day on a Friday, I had a late call from a client. They had been suspended from work. They had been called into a meeting to discuss performance. The client refused unless an interpreter was booked or a support person could be arranged. Instead, because they refused the meeting, they were frogmarched from the premises and told they were suspended. They still do not know for how long because since being suspended no communication has happened. You see, the privileged hearing people expect this person to do all the adjusting and refuse to adjust for the client. A simple text or an email seems to be beyond these privileged hearing people.

I spoke to the client for nearly 2 hours. The client was depressed. I mean really depressed. They spoke about driving home and not caring what happened to them. They spoke about how they had requested interpreters and were told no because they were a good lipreader. The boss had said, “… if you don’t hear something, let me know, Ill tell you.” They had requested the staff TV in the staff room have the captions put on. This was refused because the captions were a distraction and annoyed the hearing staff.

As the client told me this story, my anger was palpable. I had to do many things for this client. The priority centred around the depression and making sure that the client was safe. As a professional I did this in a cold and methodical way. As a human being I was seething.

Earlier in the week I had been working with a client that wanted to transfer to our service. They had been supported in a “hearing” organisation that, in the clients own words, “… didn’t understand deaf.” If you are hearing, a transfer is a very straight forward process. There is a number you call, you provide details and request a transfer to the organisation that you want. It takes 10 to 15 minutes.

Of course, if you are deaf and for whom Auslan is your first language, accessing this transfer line is problematic. I have the privilege of speech and a captioned mobile, so I told the client I would ring for them.

Now, before I regale the reader with this tale, I should explain that before calling we tried a number of other ways to make the transfer happen including online means. The online method failed because it sent a code to the clients mobile, which was unfortunately broken. No matter, there was the phone method which hearing people get to use. It’s their privilege.

So I rang. Trusty captions on my mobile telling me what buttons to press to get where I needed etc. I got an operator and explained what I was trying to do on behalf of the client. The operator, point blank, refused to process the transfer. They wanted to speak to my client. I pointed out this was not possible because they were an Auslan user, their speech would not be understood over the phone and so on. Didn’t matter, the operator still refused. “If I help you …. “ said the operator, “… Ill get in trouble.”

I explained why we couldn’t do it online and why the transfer phone line was our only option, all to no avail. The operator said I could try this special line that helped people who use different languages. You see, if you are hearing and don’t speak English you can use this other line through a spoken language interpreter. I explained that this was slightly harder with an Auslan interpreter. But the operator assured me it would work with Auslan too. Yeah, RIGHT!

So, I called this other line and was asked by the AI technology what spoken language interpreter I wanted. I said Auslan and was asked to confirm if I needed a Bengali interpreter. I decided not to respond in the hope that I would get an operator. I did, eventually, but as I was explaining the Auslan issue the line cut out. I tried again with the same result except this time I was asked to confirm if I needed an Arabic interpreter.

In exasperation I called the original transfer line again. I was told the same thing, that they wouldn’t process through a third person. They said that my only option was to call the organisation that the client wanted to transfer from and organise it by agreement. So I did.

So after messing about for half an hour getting through this organisations call centre, I got put on to a case worker who referred me to their manager. The manager refused to process the transfer as well. She said that the clients would need to come into the office and ask for the transfer themselves. I pointed out they were Auslan users and had traveled a fair distance to see us for this transfer (over 50 kms.) I pointed out they wanted to come to us because we were a specialist service for deaf. The manager was adamant …. They had to come in to their office.

It was two and a half hours into the appointment by this time. I apologised profusely to the client. They were very understanding. (I wouldn’t have been) The client said they would pop into the organisation on the way home. They did so, saw the manager for five minutes, who said OK and that they would email me the transfer forms. A week later I am still waiting for the signed transfer forms.

I might get in trouble from work for writing this. I am beyond caring. I am so angry. This client traveled over 50 Kms to see us. They patiently waited 2 and half hours as we tried to resolve things and get them transferred. They were forced to travel back home and attend the office of this organisation. They did all they were asked for and the transfer has still not been processed. If they had the privilege of being hearing, this whole process would have taken ten to fifteen minutes, tops. Let’s also consider that if you are hearing and speak another language, you have more privilege with this system than a person who is deaf!

Yes, I am angry. Not for myself but my client and thousands like them that have to endure this shit every day. Privilege, especially hearing privilege, is rife in Australia! It is a disgrace! As for me, rest assured my anger will drive me on. A few people will be hearing from me next week. It wont be pretty and it wont be fast but change has to happen.

It’s just not fair!

“Hi Gary…”, the friendly sounding email greeted me. ” It’s been nice knowing you, but it’s adios. We did warn you, but you ignored us! As a result we have kicked you out! Soz about that, but if you wanna come back, just re-register all over again. Cos you know, we know you just got oodles of time to waste on registering online. And what’s more, you’re Deaf, and its our job to make your life as complicated as it possibly can be. See ya online soon, or not!

Much love

The No Help Desk, National Relay Service

Of course, the National Relay Service didn’t write that to me, but they may as well have. It’s true they greeted me at the start with Hi! They then proceeded to deregister me because I had not responded to them as to whether I wanted to remain registered or not. They did actually tell me I could re-register again if I wanted to, but that’s really not the point.

For you hearing people reading this for the first time, The National Relay Service is a service that Deaf people use to access the phone. In years gone by they used what was called a Teletypwriter (TTY). This was a device where you could type messages to another person who had a TTY via the phone line. What the Government did in 1995 was set up a new system where Deaf people could phone a hearing person who didn’t have a TTY through the National Relay Service . A Hearing Relay Officer would then relay what you typed to the hearing person at the other end and type out what the hearing person responded..

For three decades or so this was primarily the way that Deaf people called hearing people. It’s how they ordered their Pizza or got themselves a taxi. The more hardy, like me, would call girls they had met in the pub and try to charm them through the Relay Officer. The Relay Service was a godsend and, I am sure, even a life saver for many.

Over time, technology lessened our reliance on the Relay Service. First it was SMS, then email, then chat services like Messenger. Eventually services like Skype gave unapparelled visual communication access for Deaf people and led to the establishment of video relay service for people that used Auslan and wanted to make phone calls through Auslan interpreters.

But as technology and the internet took over, the need for the Relay Service became less. But there was and still is always a need for the service for many Deaf people. Like if your car broke down and you needed a tow. You could use Internet Relay Service to call for a tow and a rescue. But the use of the Relay Service for many of us has became very sporadic indeed. Nevertheless, it is often still needed.

The National Relay Service changed hands a few years ago. The new provider insisted on users having to register. Because you know, life is just too easy for Deaf people. You can just imagine the executives in their offices saying to each other… “These Deafies, they have it all on a platter. Endless supplies of interpreters. Open captioned movies three times a year. Hospitals that meet their every communication need and access to education and employment wherever they go.” Clearly the executives decided Deafies had to be brought down a wrung or two. So they came up with the concept of registering for the Relay Service, true story. And just to make it a little more difficult they decided to kick Deafies out sometimes and make them reregister.

I jest, but it really isn’t funny. Why, why, why – should Deaf people have to register at all? Whereas hearing people can call any time and anywhere, Deaf people have to jump through hoops. And then whatever device they use – Phone, iPad, laptop, work laptop etc- they have to sign into each and every one of those devices to access the Relay Service. And don’t forget your password, whatever you do, because otherwise you will have to sign into all those devices all over again after you reset it.

Too add insult to injury, you have to register for a service that often does not answer. It often takes many minutes to connect. It often drops out mid conversation. It’s a shambles of a service now. A far cry from the wonderful and efficient service it was when it was introduced.

And what if you re a person that doesn’t check your personal Gmail too often. The National Relay Service has sent you an email saying to get in touch or you will be deregistered. You don’t see it, you get deregistered., You’re driving in the country and your car breaks down. You try to use the Relay Service to call for help but cant because, unbeknown to you, you have been deregistered because you didn’t reply to the email. Or the power goes off at home and you need an electrician. Or you need to call your elderly mother to see if she is alright and she isn’t tech savvy. I bet you our dear friends at the National Relay Service didn’t think of these scenarios when they came up with this ridiculous and grossly unfair idea of registration.

For me, it doesn’t matter anymore. I have my captioned mobile. I can call anyone at any time without the need for a third person. But I have the privilege of speech. Many Deaf people do not, let alone people with a speech impediment that also use the Relay Service. What of these people? Having to register and then running the risk of being unknowingly deregistered is just not fair.

As for me… It’s farewell from me National Relay Service. You have destroyed a once proud and essential service. I might not need you anymore but just remember, many people still do. LIFT YOUR GAME.

FOR AN AUSLAN VERSION OF THIS ARTICLE PLEASE SCROLL TO THE END. WITH THANKS TO MARNIE KERRIDGE FOR THE TRANSLATION.

I was at the Australian Open tennis last weekend. There was a special tournament on featuring Deaf tennis players from all over the world. My mate, Glen Flindell, was playing. He is knocking on 43 and he is still out there. He has probably seen better days but he can still give the youngsters a run for their money. The tournament was probably a bit of a changing of the guard as far as Deaf tennis in Australia goes. He jokingly told me he was over the hill and wished he had a time capsule to take him back ten or fifteen years to when he was at his peak. Indeed, Ashlee Narker, at just 16 years of age, was beating everyone in sight at singles and doubles. She eventually won the tournament. Australia’s Deaf tennis is in good hands.

I watched Narker play her doubles match. Sitting next to me was a nine year old deaf boy. He was an Auslan user and had two cochlear implants. On his implants he had magnets of Buzz Lightyear and what looked like a replica of a red and white ice hockey puck. I thought of my day when I was a young deaf lad. I was encouraged to wear my hair long to cover my hearing aids. Here was this young lad with neon green cochlear implants, further being shown off by bright red cartoon magnets. His mother told me he had a whole collection of these magnets that he wore with pride. It is how it should be.

I had a chat with this young boy. I signed to him and asked him who he was going for. Narker was playing doubles. Her partner was a brilliant young woman from Tapei. Their opponents were from Greece and Japan respectively. The young lad was of Asian descent and told me he was going for the team with the Australian in it. Indeed, watching Narker would have been inspirational for him. He chatted about his school and the fact he was returning to school on Monday after the holidays. I suggested to him that in 7 years time, when he was 16, he would be out there playing just like Narker. He flashed me a beaming smile and nodded in agreement. You could see that Narker was his inspiration.

From Flindell to Narker and this 9 year old deaf boy, I was acutely aware that the Deaf community was seeing a changing of the guard. But what would the future be for this 9 year old deaf boy? He was possibly watching Deaf sport for the first time. I wonder what impact it was having on him. I remembered my first involvement in Deaf Sport. Every single member of my team signed. I was a fledging Auslan user at the time. It was an eye opener for me.

Over the years I was involved in the Australian Deaf Games. Through cricket, golf and soccer. Auslan was always central to our communication and sense of community. In 2005 I volunteered for the Deaflympics in Melbourne. Deaf people from all over the world. Different sign languages from different countries. Sign language was central to everything. Everywhere you looked people were signing. These are the memories that I and others took away from these events. The sport was important but that sense of community and cultural gathering was what it was all about.

So here I was at the Australian Open, watching the Deaf tennis. In the stand I caught up with the Deaf community. Of course, we all were using Auslan. People I hadn’t seen for a while, big smiles big hugs and endless conversations in Auslan. Marnie and I are becoming grandparents. Everyone was asking questions about the little one. Oldies like me exchanged health stories. Hip replacements, knee replacements, medication and tales of where their children were now. It was marvelous. It would have been brilliant for this nine year old Auslan user to see.

But out on the court it was different. None of the players seemed to sign. The umpires did a little bit. They would brush the top of their hands to indicate a let. They would use number signs to indicate the score for the deaf players. But as I watched these deaf players, seemingly none of them signed. I watched Australia’s John Lui get beaten by a hard hitting player from India. No one spoke, no one signed – they were fully immersed in the game. They shook hands at the net, they spoke to each other, they didn’t sign. I thought that was odd.

I went to watch the next game. The Indian player who had beaten Lui sat in front of me with two people who were probably his parents. He had two hearing aids on. He and his parents conversed in spoken language. No signing. They may as well have been hearing. I looked out at the game I was watching, Narker was playing. I could clearly see Auslan interpreters behind the umpires chair. There was a minor disagreement as to whether the ball was in or out. The foreign player spoke to the umpire, the umpire spoke back. No need for the interpreters. Narker and the foreign player said something to each other. No signing.

I watched the doubles. Surely now the players would sign to each other. Alas, no. It was interesting to watch. The doubles teams would get together to talk tactics. One would turn their back on their opponents and the other would stand directly in front of them so that their opponents could not see what they were conversing about. I felt for sure they would sign to each other, just small signs but hidden from their opponents. But no, they spoke to each other. I found this strange, not because they didn’t sign but because the doubles partners were from completely different countries. I wondered how much they had actually understood of each other and how much was bluff. Plenty of nods and thumbs up, but I wondered if some of this was actually a Deaf Nod and they had no clue what the other had said. Cynical of me, I know.

I did note that they had some signals that they would use behind their backs when their partners were serving. This is common in tennis and does not really equate to sign language. Despite this. my observation was that communication was primarily spoken language. From what I could see sign language was absent or distinctly in the minority.

Later, I watched Australian women’s players, Narker and Macy, socialising with each other. They were obviously good mates but they didn’t sign to each other ether. I watched Macy play doubles with her German partner – no signing, they spoke. I watched Narker play with her partner from Taipei – they spoke too. They were playing against a Greek and Japanese combination who spoke to each other as well. For me, an old fart from the past who came from a time where participants of deaf sport all signed and where if you were oral you either learnt to sign or sunk without trace, it was a huge culture shock.

I wondered if this is the way of the future. I wondered if cochlear implants have become so dominant, where speech has become so dominant over sign languages, that this is the future of Deaf sport. I wondered if in the future Deaf sport will be dominated by these oral implantees and where signing participants will be the minority. Rather than this huge gathering of signing sports people that I had experienced, those that sign will be the minority. Confined to small pockets where they communicate with each other while the oral dominant participants SPEAK to each other.

Is that the changing of the guard that we are witnessing. I hope for my nine year old Deaf Auslan user friend that this is not the case. I hope that Deaf sport will always be about the Deaf community, its culture and its beautiful and diverse sign languages. Because while the sport is important it is not as important as the Community for which Deaf games have always been a cultural gathering of significance. My wife tells me she noticed a couple participants signing off court. Who knows, may be I am overreacting.

Interesting times, interesting times indeed.

Footnote** I write this piece, not to start a war about communication methods, rather as an observational piece as to how the make up of the Deaf community and institutions like sporting events have seemingly changed over the years.