He was a proud little boy. Just six years old and he got his Covid vaccination today. He stood proudly for a photo showing the certificate they had given him, replete with his tiger face mask. Super brave read his certificate, and indeed he was. He has some health issues so it is important that he is vaccinated. He knows this, so he rolled up his sleeve. It’s also important that his family and everyone around him are vaccinated so as to lessen the risk that he catches Covid. Unsurprisingly, his family have zero tolerance of people who refuse to get vaccinated.
At the other end of the spectrum is The Joker, Novak Djokovic. He is perhaps the worlds most prominent anti-vaxxer. He refuses to get vaccinated, presumably because he is one of those individuals that believe that it is his right to refuse. This is the guy who believes that “positive thoughts” will cleanse polluted water because, “..Molecules in water react to our emotions.” He also tells the tale of his nutritionist pressing a piece of bread down on his arm and feeling much weaker as a result. He believes that this is evidence that he is gluten intolerant. Whatever his reason for not wanting to vaccinate, given the above, I really don’t want to know. (For more on Novak’s weird beliefs, click HERE. )
You would have had to be in the Antarctic, with no access to any technology at all, to not have heard about Novak this week. He landed in Australia and had his visa revoked. This is because he is not vaccinated. Novak claims that he had an exemption because he was diagnosed with Covid on the 16th December. Apparently, he was photographed at various events on the 17th and 18th December. Clearly, he didn’t care about passing Covid on to anyone. He didn’t care that he could have placed the life of a little boy like my friends at risk. He is just a self entitled jerk that does what he wants.
We know that today the court said that revoking Novak’s visa was wrong. He had an exemption from some eminent doctor. He had done everything right. The court said that legally Border Control were wrong to revoke his visa. Apparently, Novak had until December the 10th to declare his exemption to Tennis Australia, he didn’t. You see, he wasn’t diagnosed until the 16th December. So he broke the rules, shouldn’t have been allowed in. But hey, he has a zillion dollars to hire the best lawyers around to argue his case. To add insult to injury, the court has ruled the Australian Government erred and have to pay his costs.
I am no fan of the Federal Government. I am even less a fan of Novak. What a whiny bastard he is. In detention all he did was moan. The food was crap, the place was dirty, there were maggots in his food. He was being treated like a common criminal. In that same hotel were asylum seekers who have been detained there for a number of years. They are being detained for no other reason than that they were fleeing violence and oppression in their own countries. They don’t have access to millions of dollars to fight their cause. They don’t have access to the media who lap up their every word. They don’t have the President of their country fighting their corner, nor do they have their countries Ambassador pleading for them to be placed in more suitable accommodation.
Yet, this rich and super fit man who has had the privilege of playing tennis for fun and getting rich from it, who won’t get vaccinated, who thinks he can clean water through his positive thoughts and who refuses vaccination is treated like a king. I am sorry, I have no sympathy for him. I just wish he would get on the next plane and fuck off back to Serbia.
It’s not because I am jealous, its because the treatment that he is getting is an absolute insult to so many people, particularly people with a disability. Consider this quote from my friend Suresh,
” .. For all of you who are mortified by the Govt’s treatment of Novak Djokovic, can I simply note that we routinely deport members of a family who happen to have a person with disability in their midst. If you want to be hurt and offended by our abrogation of human rights, spare a thought for the families of and the people with disability that we do this to. And we also routinely place people whose visas we cancel into Immigration Detention and not at the Park Hotel in Carlton… “
Did you hear about Kayaan Katyal, the six year old with cerebral palsy who Australia tried to deport after his family had resided in Australia for 8 years. Yes, 8 years, you read that right. He was, in fact, born in Australia but they wanted rid of him because Australia did not want to bear his medical costs. The family were about to open a restaurant here and had paid taxes for 8 years. They were awaiting permanent residency but the moment that their child was diagnosed with a disability the Australian Government wanted them out. This was 9 months ago.
Or Siyat Abdi, a blind Doctor, who had lived in Australia for ten years but was asked to leave because under the law his ‘condition’ would “… be likely to require health care or community services”. He was eventually allowed to stay after having spent thousands of dollars in appeals and having to lobby to the Minister to allow him to stay.
The Government also tried to be rid of Kinley Wangyel Wangchuk, a Bhutanese adult with a hearing loss and learning disability, who had been in Australia for 7 years. The reason that Australia wanted him out? “It is an objective assessment to determine whether the care of the individual during their stay in Australia would likely result in significant costs to the Australian community or prejudice the access of Australian citizens and permanent residents to services in short supply.”
Apparently, up to 15 families a year face this predicament. Unlike Novak they don’t have millions to fall back on to appeal their case. They cannot afford the best lawyers. People don’t line up outside of their hotels protesting on their behalf. The Presidents and Ambassadors of their countries don’t scream and complain asking that they be given a personal chef and a better hotel. They are left to their own devices to fight their corner, with minimal resources to help them. Many lose and are sent packing.
So, excuse me if I would rather this entitled millionaire sports person who lacks nothing, who thinks he can clean water with his mind and refuses vaccination because he is like a child throwing their toys out of the pram, be sent packing and hopefully banned from returning to Australia for three years. It is just an affront to the dignity of these people who want to come to Australia for a safer and better life and are refused. It shows that these people and people with a disability in Australia have ZERO VALUE!
Look, I get it, immigration mucked up. Look I get it, Novak applied for an exemption that was seemingly granted. Look I get it, The PM spoke publicly to garner populism on the back of an outraged Australian population. I get it, legally Novak has grounds to stay.
But, I don’t care. In October last year Dan Andrews publicly stated that unvaccinated players are unlikely to be allowed to play at the Australian Open. Said Andrews, “Professional sport is part of that authorised worker list and they have to be double dose vaccinated.” He did say that the visa issue was a Federal Government responsibility as a caveat, but his view was clear. His silence this week has been deafening.
I have all sympathy for a tennis player who may not be able to vaccinate for health reasons such as allergies and so on. Novak is not one of them. He is just an entitled brat who thinks he can do what he wants. Chuck him out I say. He is just an insult to all those genuine asylum seekers and refugees, particularly people with disability, who have been denied entry and the vast resources that he has to fight his corner. It is a disgrace and it makes me sick to my core!
That is all!!
For more information about the cases described in this article, click on the following links.
Xmas time is frantic. More so if you have changed jobs, have to move interstate and prepare your Adelaide house for the AirBnB market. Being deaf can make this a big challenge too. Luckily, I now have a captioned mobile phone where I can make and receive voice calls and this is saving me heaps of time. But there is Covid and all of the communication issues and restrictions that it brings with it.
To make matters worse, I have building repairs to do on my house in Adelaide. Luckily,it’s covered by insurance but its a big job. It took a long time to organise. The process started in June 1975 and the builders have just arrived today. I jest, it was actually June 2021, but it feels that long.
Last week I finally moved back to Melbourne for good. The last few weeks I have been toing and froing, It’s a real pain in these Covid times because each time I arrive back in South Australia I have to have a Covid Test at least 72 hours before I leave. Of course testing brings with it masks and masks with it communication issues. Most of the Covid Testers are great but some are kind of, to put it mildly, thick.
The simple thing is to show us the questions on the iPad, we then respond. Deaf who speak well can verbalise , those less confident in their speech type answers on their phone and so on. It is not rocket science. There is always this one person that thinks we can some how hear them and when it becomes obvious that we cant, they resort to pantomime that often makes no sense at all. Over exaggerated mime to show that they are going to stick something up your nose can be hilarious. More often it just gets on your nerves.
If you drive into Adelaide you have to deal with the border control. If you fly you are dealing with security, air hostesses and so on. All replete in masks requiring you to tell them you are deaf, cannot hear them and have to lipread them. The number that continue to talk through their masks, even when you tell them this, is mind boggling, A simple trip to SA, either driving or by plane, becomes a communication logistical nightmare. I don’t know about my Deaf and hard of hearing friends, but it leaves me feeling pretty exhausted.
Today, 15th December, was something else altogether. Let me tell you the tale.
I took off for Tullamarine at 5am. My poor and tired wife had to drop me off and then go to work. I got through security with not one of them willing to remove their mask to assist with communication and all of them trying to speak to me through their masks. One actually stood closer to my ear and, presumably, had a bit of a yell before realising that this was futile.
Jetstar staff were much nicer. They didn’t remove their masks but pointed to relevant things and helped me on my way. The flight was uneventful. I was surprised at how lax the Adelaide airport security was. No checks. They just waved us through. I headed to Hertz to pick up the hire car.
It was just my luck I got a trainee. But, she was brilliant. Again, she didn’t remove her mask. However, because it was quiet at Hertz I was able to use Live Transcribe on my phone. She spoke clearly to my phone so that her voice was transcribed. This allowed me to answer the relevant questions. She then took me to my car, pointed to relevant areas, showed me how to use the key and I was away.
Next stop was Covid Testing. Although I had tested negative before leaving one of the conditions of entry to SA is that I get tested as soon as I arrived. Once I am tested I am free to mingle. If I test positive I must immediately quarantine. Highly unlikely given that I am double vaccinated and just had a negative test but possible. So I drove to Bedford Park where the ever obliging testing staff just showed me the questions on the iPad for me to respond, swabbed me and sent me on my merry way.
It’s not yet 8am and I have navigated all of this. I set off for home where the builders are doing the repairs. As I leave the testing station my phone flashes. I pull over and use my trusty Google Pixel Captioned Phone to answer. It’s the builder, who has been told to text not call. He, of course, calls. Luckily, the captioned phones means that I can speak to him. His boss has neglected to give him the pin to the key safe. “We are at the front door mate”, he says. I give him the pin and let him know I had flown in, was getting tested and would be there soon.
It’s a beautiful drive to my house. Beautiful views of the sea, the sun is shining and all is right in the world. I arrive at my home and one of the tradies approaches me, replete with industrial mask. I assume this is because of the dust as he had been pulling off plasterboard.
I cheerily greet him. As I approach he tells me to stop. Big hand gesture telling me to stop. He points to me, he points to him and gives me a gesture that clearly says I’m not to approach any closer. He starts talking to me through his mask, of course. I let him know that I cant hear him and have to lipread. He starts a pantomime which is clearly a plane. Picture a little boy, arms outstretched, rocking from side to side in clear imitation of a flying plane. That’s our tradie.
So anyway, I says yes, I’ve flown in from Victoria. He starts talking through his mask again and shaking his head vigorously. One assumes he is saying NO … something. I tell him its no good, he will have to remove his mask so I can lipread him. He takes three steps back removes his mask and begins speaking,
I resist the temptation to pretend to need binoculars to lipread him. He asks if I have been tested . I tell him yes, on the Monday and that it was negative. I tell him not worry about me, I was just going upstairs to work. Meanwhile, his work mate is across the road looking across at me, very agitated and seemingly scared. I give him a wave and head upstairs.
I settle down to respond to staff and emails and all the things you do as a team leader. Ten minutes later there is a text from my tradie mate. He wants proof that I tested negative. So I come down stairs and he is sitting in his truck. I presume its smoko time. I find the SMS message telling me that I am negative and make my way to his truck.
He is a bit away with the fairies. I knock on his window. He turns round to see me and literally jumps back in fright. He gestures at me to go away, move back. This I do and he quickly gets out of the car and runs five metres up the road telling me to stay. His workmate has got out of his car and run even further up the road looking absolutely petrified. I give him another wave. To be honest, he looks like he might weep with fright.
Th tradie removes his mask. With a combination exaggerated lip movements and more plane pantomime tells me that I’ve been on a plane. He doesn’t care about my negative test. I might have caught Covid on the plane and that he is leaving. I point out that I am double vaccinated and even if I did catch it on the plane, I would not yet be infectious. I offer to leave and come back later.
He said something that lipread distinctly as “No fucking way”. He says that he will come back on Saturday and finish the work. By this time I am thoroughly fed up. I tell him to do whatever he likes and that I was heading upstairs to work. And that’s what I did. He and his mate left too, leaving behind a very expensive ladder and some tools. Presumably, because I may have touched them and they would catch the dreaded virus from them. I am in the mood to put them on Ebay and make a profit, that’s how fed-up I am.
About half an hour later I get an email from the tradies boss. Basically berating me for putting his staff at risk. I email back stating that this is incorrect, that I have followed all protocols and am not required to isolate. Point him to the relevant internet pages to consult and resist the temptation to tell him to go fuck himself.
To his credit he emails me back. tells me I was absolutely correct and that I had done nothing wrong. He says in the interest of safety, his team will return on Saturday, when I am gone.
And that, dear readers, was my day. Merry Xmas! – I think. Oh, and a little later I got my third shot! GO ME!!!
Merry Xmas NDIS people. I wish you all good tidings of Xmas and the new year. I wish this open letter to you all could be in better spirit. Alas, the NDIS seems to be lacking in Xmas spirit at the moment if recent decisions are anything to go by. In fact, the NDIS seems to be lacking in any spirit at all in its hell bent quest to cut costs.
I would like to tell you a story. You see, I once worked as a Senior Local Area Coordinator. For a time I was even a Senior Planner within the NDIS on a short term contract. I like to think that I was a very good planner. Since leaving the NDIS I have been very outspoken about ongoing failures of the NDIS. So much I that I fear I have been blacklisted, never to be employed again.
I started in 2016. I was employed as part of the second roll-out to the North East Metro area of Victoria. It was an interesting time because the NDIS screwed up a change over of their CRM system. Full records of participants did not transfer over to the new system. It was chaotic as no one knew what funding was left. Services could not be booked, let alone paid. Indeed the crisis was so bad that some services closed down because they could not generate any cashflow to pay themselves and staff.
The crisis lasted about 8 weeks. Eventually things returned to normal and we began planning. As a newbie it was a sharp learning curve. Not only was it a sharp learning curve for me as a worker in a partner organisation, it was a sharp learning curve for people that worked in the NDIA offices too. Many of us were new to the NDIS and had to learn the rules and legislations of the NDIS very quickly.
For a time we even shared offices with delegates from the NDIA. It was great because we could sit down with them and talk about plans and client needs. We could explore the legislation together and discuss Section 34 and how it applied to decision making. All of us had a copy of section 34 on our desk, it was our bible.
My second ever plan is still my favourite. She was a young woman studying to get into the medical field. She had cerebral palsy and had personal care needs. She attended university and until she had applied for her NDIS her mother was her full-time carer. Her dad pretty much her full time taxi.
Mum would attend the university and carry her books to class. She would attend to her personal care needs throughout the day. Toileting, getting food from canteen, assistance with feeding and so on. The young woman was a full time student. The commitment from her mother was huge.
She had friends at university too. She would go out with them. Dad would drive her and I think her friends, between them, assisted with her personal care needs. Her family were brilliant. The young woman wanted for nothing.
In the mornings mum helped her get ready. Got her books ready, dressed her and breakfasted her. Then dad would drop her and mum at university and the day began. This commitment from the family had been going on for two years. It was a joy to behold.
Like most young people the young woman wanted some independence. She didn’t want to have her mum and dad with her wherever she went. She wanted to live life on her own terms. It is not that she was not grateful for her families support, it was just that she was young and wanted some independence and privacy.
I had a great relationship with her family. When I visited they always fed me. They were from a CALD background and they would feed me with exotic curries and treats. When I left mum would slip me goodies like samosas and curry puffs.
One must also consider the toil on the family. Mum couldn’t work because she was virtually supporting the young woman full time. She didn’t complain, she just saw it as her motherly duty. When I worked in the NDIS field I met many, many families like this. The level of commitment they gave was immense.
The young woman wanted to be able to attend university without the constant presence of her mother. Her mother was quite happy to continue with the support she was giving but admitted that a bit of time for herself would be wonderful. The young woman also wanted to be able to go out with her friends without her dad hovering around.
The young woman also wanted to leave home eventually and wanted to prepare for that. She wanted carers who were not her family. She wanted to develop some skills that would enable her to be as independent as possible. She wanted to identify technology that would enable her to cook for herself and be safe in the kitchen. The NDIS plan that she required was quite substantial and needed to cover her time at university, time at home, time in the community and her capacity building requirements.
I was lucky to be sharing an office with NDIA delegates. We discussed the young woman’s needs at great length. We agreed that the care needs on campus were the NDIS responsibility. We agreed that the share of care that the informal supports had taken on (mum and dad) was not really sustainable. We also agreed that it was completely feasible that the young woman wanted to develop capacity to be as independent as she possibly could in preparation for moving out of home. There was even some support required at home to assist with preparation, scribing and getting assignments done.
All care needs on campus were funded. A carer to assist the young woman get ready in the morning was also funded. Assessments were funded and therapy was funded to build greater capacity leading to greater independence. Transport was funded to get her to University, home and to be able to socialise independently. Her needs to complete university assignments such as scribing while at home were also covered,
It was a great plan. It all fitted in with section 34 of the Act. The plan allowed for community and economic participation. The plan allowed for capacity building towards independence. The plan acknowledged she was a fulltime student and therefore qualified for level 3 transport. The plan acknowledged that the level of support provided by informal supports was not sustainable and that the informal supports needed to be supported so that they did not break down. The plan acknowledged that informal supports also needed to participate in the community and that the level of support that they had to provide did not make this possible. All of the above are justifiable under Section 34 of the Act. Approving it was a no brainer.
A happy story. One that shows the potential of what the NDIS can provide when people know what they are doing and interpret NDIS legislation correctly. Indeed, none of the above is rocket science. Sadly, it seems, that if this young woman had tried to get this level of support today she might be denied.
Recently I received an email from an access and inclusion officer at a university in Queensland. This is what they said of some students at the campus, “…. They were advised that NDIS will not cover on campus personal care or off campus educational support (such as a support worker when at home to help with highlighting and organising notes, organising folders, assisting with scribing and handling notes for assignments etc).”
I despair. What are these delegates doing? What justification do they have to deny this support to a person with a disability that requires it so they can participate in university? I can tell you that they have absolutely no justification whatsoever – NONE!
Let’s be clear. A university’s job is to teach. It provides all the necessary things for a student with a disability to learn while on campus. Auslan interpreters, captioning, wheelchair accessible venues, assistive technology, extra times for exams and so on. A university is also responsible for providing accessible amenities like parking, toilets and the like. That is their responsibility!
Every student who does not have a disability that attends university cares for themselves. They feed themselves and look after their own hygiene. This is not the university’s responsibility. If not being able to care, feed or look after ones hygiene will preclude someone from participating at university and campus life this is where the NDIS comes in. If its not to do with learning it is not, I repeat, IS NOT, the university’s responsibility. It is, I repeat, IT IS, the responsibility of the NDIS. A responsibility that is clearly outlined in section 34 of the ACT, that allows community and economic participation. It is not rocket science.
I know not why these students with a disability are having their funding cut for care needs on campus. If delegates are ruling this they should not be in the job. If Local Area Coordinators are refusing to ask for it in plans, they should not be in the job. If it is directors, the CEO or the Minister directing people to not fund this care, they are in breach of their own NDIS legislation!
I have no doubt these students who are being denied are going to review the decision. It’s going to take three months or more for their review to be dealt with. In the meantime how will they study? Possibly, even after the review, the NDIS will stubbornly refuse to change their decision and this will necessitate an appeal to the Tribunal at great expense.
What is worse is the appalling stress and barriers that these ridiculous decisions are placing on the students. What is worse is that the NDIS are messing with the dreams and aspirations of these students with disabilities. It is disgusting!
So to the NDIS and its partners I say merry Xmas to those of you who constantly strive to do the right thing, and there are many. To the others, take a long hard look at yourself, you are in the wrong job, just get out!
Australia is opening up. The borders are coming down. Vaccination rates are booming as we hurtle along to that 80% of population over 12 that are double dosed. By all accounts the data is showing that the Covid 19 vaccines are extraordinarily effective. With a double dose of the vaccine you are 75% less likely to catch it. If you do catch it you are not likely to get very sick and end up in hospital. Because your body has the immunity to fight the infection you are also less likely to pass on this awful disease to others. In South Australia it is expected that when the borders open 13 people may die in the first 300 days. Not much fun if you are one of those that die but put into perspective, 125 people from south Australia died from the flu from 28486 infections in 2017. So we know Covid19 vaccines work. They are not perfect but they will enable us to return to some sort of normalcy.
BUT WHAT IF YOUARE DISABLED?
In September this year the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability released a report that found the vaccination of people with a disability and their support workers was seriously deficient. For whatever reason the vaccination rate of people with a disability is extremely low. Why? It could be for any number of reasons including:
Lack of plain English communication explaining why vaccination is important.
Higher rates of susceptibility to misinformation through cognitive, communication and literacy issues.
Lack of mobility and ability to attend any number of hubs.
Fear of the unknown and lack of support to get vaccinated.
General lack of understanding of what is happening during this pandemic and the need to get vaccinated.
I base these few points on my own experience in working with people with disability for over 30 years. I am sure there are other reasons but I hope that these few points give the reader some sort understanding of why the vaccination rates could be lower for people with a disability. It’s quite scary, many people with a disability also have other underlying health issues that make them more susceptible to Covid19. This could be health issues related to their disability, poor hygiene, poor nutrition or simply not understanding and following rules like mask wearing and social distancing. In October the ABC TV show, QA, provided us with a harrowing statistic that in the UK, six out of 10 people that have died from Covid19 have been people who have disabilities. That is more than half of the total deaths
I am sure some of those with disabilities in this data were also elderly people. Many would be people that had acquired their disability with age and who had underlying health issues. However, it is still a horrifying statistic. Typically, governments, all over Australia, have not recognised the dangers for people with a disability until it is almost too late. It is only since the Royal Commission Report was released on September 27 that they have kicked it up a notch to try and get people with a disability vaccinated properly.
As we are all celebrating opening up there are going to be many people with a disability who cannot go out. They will be barred from entering places because, largely through no fault of their own, they are not vaccinated. Mary Mallett, CEO of Disability Advocacy Network Australia, says the community is feeling “worried”.
“The government let down people with disability. People with disability and their families and advocates are really worried that many people are not adequately protected and will be a few months behind at least, which means they will not be able to join the rest of the NSW population in attending events, getting haircuts, going shopping, taking part in the community and society as they should be able to,”
As it always is, governments have had to be embarrassed action. The Victorian Government has allocated $5 million, I believe, to fast track the vaccination of people with a disability. Why now? They have been working towards 80% vaccination for some time now. Why did people with a disability mean so little that they and other governments had to be embarrassed by a targeted media campaign to get action happening? There is no doubt in my mind, people with a disability are a lesser kind of being, under valued and under represented.
It came as no surprise to me that people from the Deaf community, apparently, are among the lowest vaccinated in the country. The Deaf community can be incredibly open to misinformation. There are a large number of people within that struggle with English language. They are easily influenced by people who spread conspiracy theories. Many have degrees of language deprivation that makes it hard for them to see issues from different perspectives. They are vulnerable to misinformation. It actually makes me quite angry, because the people that spread this misinformation are causing great harm and contributing to possible tragedy. They should know better. I include the pro-choice people in this. The choice they make is placing others at risk. It’s your body, true, but what right do you have to risk the lives of others on a stubborn principle.
I’m sure there are other issues. Many of us deaf people are experiencing severe social anxiety as the result of masks. As a result many are avoiding situations where they must communicate with people in masks. Social anxiety is a real thing. It is not just a case of saying get over it. In an effort to overcome this issue in Victoria they have set up hubs with interpreters and officials who all sign. A great initiative! Despite this I am told that a recent Hub was attended by just 10 people in a day and only two of them were Deaf. The Deaf community in Australia is relatively small. That a large number of them are unvaccinated and at risk is scary indeed.
I wonder what will happen when the vaccination passport kicks in. The vaccination passport will mean that to enter a shop, a service, a pub or a cinema, you will have to provide proof of vaccination. I wonder what will happen when someone with cognitive or communication issues, who doesn’t understand what these passports are, tries to gain entry. The people at the door will already be stressed at having to check everyone and, more likely than not, will not have the training to deal with people with severe cognitive and communication issues. Will they remove their masks to communicate with the deaf person? Will they write notes? Will they have technology to help them communicate or strategies to patiently explain and help a person who is struggling to comprehend what is happening? More importantly, who is thinking about these issues now and what are they doing to address it? I’ve heard nothing; have you?
A lesser kind of being, that’s who we disabled people are. There is much work to be done. If governments don’t kick it up a notch it could well unfold to be a real human tragedy. Just like in Britain where six out of every ten people that died from Covid19 were people with disabilities. To the governments out there, please act fast!
Not so long ago I worked in the NDIS sector. I really loved my team there, pity about the manager. It only takes one to spoil the apple cart. I had to do many NDIS plans. I liked doing them. I liked meeting the clients. I like to think I was pretty good at them too. Of course, being deaf, communication could be problematic. For these meetings I always booked Live Remote Captioning. I could have chosen Auslan interpreters, but my reasoning for captioning was that the clients were already in a vulnerable position. They were disclosing personal information. The person doing the captioning was invisible, because they delivered it remotely and online. Having one less person in the room was my way of making it more comfortable for the client.
I am well aware that I am privileged here. I have good speech (for a DEAF GUY ANY WAY :-D) That meant that I could speak, use the captioning and carry out the meeting. The added benefit was that I would get a full transcript of the meeting. This helped me in the final writing of the plan and ensured I had no excuse for missing anything.
It is interesting because when I began my career, captioning was not available. Interpreters were barely available. I remember Barb, the accountant, was a CODA. She interpreted for me. We made hundreds of cold canvassing calls to get Deaf people into work. John was a CODA too. He managed the fledging interpreter service. I would grab him when I could. Vanessa shared an office with me, sometimes she would interpret too. The year was 1989.
Interpreting grew over time. I was one of the first in South Australia to receive interpreting paid for by the University. I had Barb, Heather and Karin. All wonderful interpreters. I remember having to fight my social work lecturer to keep them in the class. He reckoned they had no place in his class cos in real life, I wouldn’t be able to work with interpreters. How wrong he was. I wish I could see him now and give him the bird. It would be so satisfying.
So, I graduated and started work. In truth, I worked and studied. In those early days the phone was always a problem. I would apply for jobs; they would ask me about the phone. I would have to confess that I couldn’t. Try to sell the idea of job trading. You know, I’d do extra paperwork, someone would do my calls. Often, I lost out on jobs because I couldn’t take incoming calls. It was a hard slog.
Then in 1994 the National Relay Service came. Finally, I could use the phone, albeit through a third person. They could call me too. I had to train them how, but most were accommodating. I had a TTY (before the times of Jobaccess. The employer had to buy it) I had a flashing light too so that I knew when my phone was ringing. These were heady days. Ordering pizza, making dates with girls I had met in the pub and actually using the phone at work. WOOOOAHHHH!
Then it was the mobile phone. By golly wasn’t that brilliant. I remember at the start you could only send an SMS to people who had the same carrier, Telstra to Telstra, Optus to Optus etc. If memory serves me right, Robert Adam started a campaign to get carriers to allow text to different carriers.
Before that I had a Hutchinsons pager. I could receive messages but not send any. Now I could actually communicate with someone direct, no third person. OOOOH!! It was addictive. We sent thousands of texts. Blimey, it was expensive at 25cents a text. I know many a deaf person that got in heaps of financial strife cos they went batty with texts. But that changed over time to unlimited texts. And rightly so, given that a text at the time cost something like .00000000000017 cents.
Independence grew every year as technology improved. Opportunities for deaf people improved with it. Email was the next big step. You could cut out the phone altogether and just email. I say could, but hearing professionals love talking on the phone. When they could email, they would call. When they could text, they would call. Getting them to change a habit of a lifetime is harder than taking a bone from a determined dog, and almost as dangerous.
In 2006 we had another breakthrough. The Howard Government introduced Auslan for Employment. It was a shabby policy at the time. Just $5000, once off. Then the employer was expected to pay. So we campaigned hard to change this. Luckily for us, Howard got kicked out on his sorry arse (I’ve never forgiven him for Tampa.) Rudd came in and Shorten was his Parliamentary Secretary for Disability. Soon enough Auslan for Employment was an annual $6000 for everyone.
It has not increased since. It’s still shabby policy because it doesn’t consider different needs, demands, regions, duties etc – BUT – it opened doors and opportunities for many Deaf professionals in that it allowed them to participate more in the workplace, be involved actively with meetings, training and so on. For all of its faults, Auslan for Employment has been a life saver for many Deaf people.
Then there was real time captioning. Then Live Remote Captioning. I remember attending the University of Melbourne where Matthew Brett demonstrated how it could work for students. I was on the Deafness Forum Board and we had a conference. AI media demonstrated how it worked. Way back in 2004 or 2005 The University of Sunshine Coast were flogging an IBM system where lectures were all recorded and converted to text by voice recognition. An admin person would correct any errors and within 24 hours they would place the recordings of lectures, with the corrected captioning, online.
It was a great time to be hard of hearing because suddenly the access needs of this group were being considered. Whether we like it or not, nearly all people with any kind of deafness do not sign. Only a very small percentage of the vast population of people who have a “hearing loss’ actually use Auslan. But somehow, until that time, Auslan had been the primary focus of access. Not that this is wrong, rather there were many people who were missing out and very little was being spoken about their needs.
So, we went from a time when the Australian Caption Centre were really the only people focusing on captioning to a time when there were multiple providers of real-time captioning both live and remote. We have Bradley Reporting, Captioning Studio, Red bee Media and AI Media. In time Auslan for Employment changed to allow payment of captioning too. The playing field began to even out.
As Australia’s internet improved these services began to go online. Video Relay Interpreting started. Captioning was delivered through different platforms – Gotomeeting, Skype and so on. You could basically get access anywhere and anytime. Deaf and hard of hearing people live in Utopia compared with when I began my career.
For many of us it’s always been a farfetched dream for there to be voice recognition technology available whenever it was needed. You could meet friends in the pub, turn it on and it would allow you to follow conversations. You could receive a phone call, turn it on and know what the person was saying at the other end. This was the dream of voice to text technology.
I used to scoff at this. I used to think that there was no way it would become common. I mean how was it going to distinguish accents, synonyms and so on. I was a sceptic and felt that it was always going to be limited. Indeed, this was always a weakness of such technology. If you had a cold, for example, the technology would struggle to understand you.
Then one day in 2018, while working for the NDIA, Sarah sent an email. Deaf people in the NDIA had a sort of information sharing thing going on. Sarah encouraged people to try Live Transcribe, an Android based voice to text app. She said it was surprisingly accurate and she was able to partake reasonably well in a meeting when she was unable to book interpreters. So, try it I did, and I was gobsmacked. Sure, it made errors, but it could pick up everyone and it was surprisingly accurate. I began to use it regularly for impromptu meetings that were called, one on ones and so on. I have not stopped since.
The rapid development of this sort of technology has been outstanding. It has allowed me to communicate more independently, without the need of a third person. It makes errors that are really quite funny. Calling a USEP Partner a New Sex Partner for example. When the pandemic started, I would set the technology up on a tablet near the computer and it would transcribe Zoom meetings really accurately. My colleagues and I began to develop protocols so that I could participate better. No one talking over each other for example. Using the hand raising feature and so on. Teams and Google Meet have really accurate auto captioning built into their systems too.
To give the reader an idea of the change this has made on my work life, consider this. In 2017, while working as a Senior Local Area Coordinator, the bill for two deaf people to use interpreters and captioning, just for nine months, was $84000. Last year I didn’t even finish my $6000 Auslan for Employment money, so good is this technology now. I am well aware I am privileged because I speak well, but the change and the independence it has provided me has been life changing.
Live Transcribe is a free app on Android. Currently, my technology of choice is Microsoft Group Transcribe. This is an Apple based app, and its free too. It’s even better than Live Transcribe. I used to try Live Transcribe to see if it would transcribe the TV or someone talking on my phone. It didn’t work well. But Microsoft Group Transcribe does. I use it when a TV show doesn’t have captions, which is rare now. I also use it to make voice phone calls. I put my phone on speaker, I turn on the App on my iPad and away I go. Just today I arranged my home insurance and booked a restaurant doing just that.
And now we have Convo Australia. Interpreters at the ready anywhere and anytime. You pay a monthly subscription and if you need an interpreter Covo Australia are there at the ready on your phone. What that will do in terms of supply of interpreters for those that need it face to face I do not know. I do wonder if it will place stress on system that already cannot meet demand. Who knows? Time will tell.
It’s incredible, isn’t it? From those days when I had to hope that Barb was available to make a call, I can now make calls independently. From those days where only the lucky could get interpreters for their work, they are now commonplace. From the days when we could communicate independently through the NRS, we can now do away with the third person. From the days when we had to book interpreters well in advance, they are now available at the ready on our mobiles.
Life’s good! – Enjoy it until the next amazing development in technology comes along.
I ruminate on the week’s events, trying to enjoy that Friday feeling as I attempt to shake off the office filth that has covered my skin in an invisible layer. Politics abound in a small setting with individuals involved in hot gossip, changing circumstances, parties vying for support in order to impress the boss. A clear case of brown nosing.
I’m fortunate this doesn’t affect me; I am the lucky one. No one involves me, my opinion is not sought. I’m not invited to comment, I am defunct, overlooked, considered part of the furniture, so much so, that all private conversations are spoken around me without concern of being repeated because I am trustworthy, hardworking, diligent,. They know I need to keep my job which I fought so hard to get through the specialist employment service.
To begin with, everyone was so polite, engaging, trying to involve me in the team. Slowly, things deteriorated as my desk was pushed into the corner, my back to everyone, the team would meet without my knowledge. To get my attention they would throw stuffed toys at me, when I turned around, I found them laughing with each other thinking this was funny. Of course, they apologized. They were just so, so sorry. It wasn’t until I turned up this morning to find myself alone in the office, the boss walked through, looked me in the eyes and in surprise said. “Oh, you’re here!” Little did she know that I was aware what was going on.
During the week, I could see people signalling to each other and when I looked at them, they stopped. Huddling around the meeting table, hands over their mouths apparently in conversation. I managed to peek into one of their diaries to notice that everyone (minus me of course) was headed to Tasmania for a ‘team building workshop weekend. This would account for the boss’s surprise to find me in the office. So I thought, stuff it! I’ll have an early lunch with some quality me time that the company always talks about.
So here I am in the park having a breather, reflecting, rather than ruminating. I am distracted by a dad happily chasing his two laughing children around an old large spotted gum, the kids are maybe four and six, mouths open, cheeks puffed out drawing in breath, sucking it in like there’s no tomorrow. I can see dad’s mouth moving, talking to them. I watch for their responses, they both vie for his attention,. Laughing, innocent, blissfully unaware of anything else in the world, happy spending time with their dad.
My thoughts turn to the office team, laughing at the expense of others then saying sorry to those they tease. Naively believing the person will accept their apologies at face value. I’m just part of the furniture, overlooked. I silently observe this behaviour recognising the incongruence. Don’t they realise that most people are not stupid? That non-verbal communication, especially body language and facial expressions are keys to reading between the lines! Even small movements on the face can prove when someone is lying, the nervous twitching smile, the flick of the hair, the touch of the nose, the licking of lips, the rapid blinking and eye movement, ever so quickly away and back again. If you know the signs you can read someone like a book, character judgment is not about what is said, it’s about the unsaid.
Checking the time again, from habit, I remember no one is expecting me back in a hurry. I left a note on my desk explaining where I was. If anyone came looking, they would know where to find me, and as someone who’s described as being as steadfast as the Flinders Street clocks, I could take my time. My thoughts go back to the team whooping it up on their weekend of wine, cheese and chocolate tasting in Tassie. I’m sure they’re totally oblivious to anything that impacts on others.
As I head back to the office I stop in at the Supermarket. Dawdling around the aisles, picking up colourful and unusual packets, looking at ingredients, smelling different yet familiar flavours with my innate sense of smell. The check-out chick knows me as I’m a regular. She pulls down her mask, smiles and says hello. I pull out my credit card, the usual routine, place it on the terminal and wait for the ‘all clear’ nod from the lady.
Multitasking, she’s busy on the phone and looks at me, I tell her I don’t need the receipt, still occupied, she smiles back and nods in acknowledgement, I pick up the groceries turn with my bags and head for the door thinking how lucky I am to escape as the queue has suddenly lengthened, I presume she was calling for backup while I was paying.
I’m almost at the exit when I feel two large hands on my shoulders pulling me back. I’m stopped by a masked man who was behind me in the line. I see his face move, apparently talking to me, I nod politely but have absolutely no idea what he’s saying. I take out my phone to offer the message I show everyone when I first meet them.
HELLO, I AM DEAF, I CAN TALK BUT CAN’T HEAR YOU. IF YOU PULL YOUR MASK DOWN, I CAN LIP READ.
I never get tired of seeing the response to this information, it doesn’t change. I wait to see the penny drop. That look on his face. I see the cogs turn, his recognition of my Deafness. The embarrassment because he’s just accosted a Deaf person. Not knowing how to proceed or what to say to me. An entire gamut of emotions running over his face like a lightning strike which heads down his body also changing his physical demeanour into someone who is about to address a child.
I see his mouth move under the mask to talk as he finally realises, I can’t hear him! His next move is to point back at the checkout chick who is smiling and waving at me holding up the eftpos machine, I presume my card didn’t work and need to go back to pay. He indicates more slowly this time for me to follow him back to the registers, thinking I didn’t understand him, treating me like I’m a halfwit. The Deaf community identify this behaviour as Audism (a form of discrimination).
I follow him only to find the queue even longer than before with everyone staring at me. I now see the backup lady walking towards the tills, while she’s putting on her mask, I lipread her, she’s telling everyone in the queue who will listen with an exaggerated hamburger mouth movement, IT’S OK, SHE’S DEAF YOU KNOW!
Like water off a ducks back, I smile, laugh, pull out my card, say loudly “Sorry, how silly,” pay for the items and look into the queue ready to apologise again for the hold-up then spot one person purposely mouthing, saying, “She’s not Deaf. She’s Faking it. She can talk!”
Now I have lived all my life being different, I have patience and resilience, but tolerance to ignorance and stupidity is something I lack. I stand my ground, turn, look squarely at the person so they know I am going to address them; in response, they stand up tall, clench their face and body in anticipation, waiting expectantly for the verbal onslaught. The people in the queue discreetly separate, shuffling carefully away on each side leaving the spotlighted person isolated, not wanting to experience the wrath that is about to spew forth.
I take a deep breath, with a darting look I stare at this person straight on, scoring a bullseye, I hold their eye contact for a good five-seconds searing deep into their thoughts, they go pale, beads of sweat form, I see the physical effect happen, they respond with a slight tremor, pensively awaiting. I slowly exhale, shake my head at them in disgust and taking my dignity, walk away, they’re just not worth it. In that five-seconds, I manage to convey for all to see, my feelings of contempt, pity, shame, disappointment, regret and sadness all without saying a word.
Feeling deflated I head back to work appreciating the silence of the office knowing that this experience is a daily occurrence for a lot of people like me, my mood then lifts as I find a message on my desk. Smiling, I read a note from my boss telling me that the transfer to another department has finally been approved and I start on Monday. My weekend just got a whole lot better!
The plane rose gently into the sky. It was a beautiful day. This was the day that Nancy had been waiting for. She was both excited and apprehensive at the same time. She remembers a condition of her adventure was that she tell her parents. She remembered the endless preparation for this trip. She had to prove that she was medically fit for it. Communication had to be fine-tuned, there was no margin for error.
There had been hours of preparation and training for this flight. Communication had to be worked out. Manoeuvres had to be practiced. The Civil Aviation Authority had to be convinced that Nancy was safe and not a threat to others. She would not be able to hear instructions from the ground to prepare for landing you see.
As she looked down everything looked so tiny. Houses were little building blocks. She could see farmlands, ant sized livestock and dams twinkling in the sunshine. The lush green mountains in the distance were magnificent. It was time, the little Cessna was high enough.
She sat at the door in her bulky gear, goggles and helmet wondering what on earth she was about to do. She awaited the first signal, a simple tap on the shoulder. The long-practiced procedures were rushing through her head. The wind was strong in her face as climbed out and balanced on the wheel strut.– TAP.
And she jumped. In her own words: “Wheeeeeeeee, no hesitation. There goes the plane, now where is the landing spot? Then the incredible realisation – “I’m all alone, and I’m floating!!” And I did a sort of happy dance in the air.” This was 1963 and in those days there was no tandem jump for beginners. The parachute was released by a static line attached to the plane. Landings were practiced by jumping off a six-foot embankment. One had to jump backwards from the plane and after counting to three, pull the ripcord.
In 1963 Nancy was possibly the first deaf woman in Australia to do a parachute jump. Possibly the first deaf person in Australia, ever. She was to achieve many firsts. This was to be a common theme throughout her life.
Born in April 1940, Nancy Johnston became deaf after a bout of meningitis, at age 6. She was raised in a comfortable home in eastern Sydney, not far from Coogee beach. Her grandfather was a journalist and her mother, in the words of Nancy, “.. was a woman of many talents. She was indefatigable in ensuring I participated in LIFE in general through a good education, sporting groups, independent travelling around town, getting a driving licence etc.“ In short, her mother made sure Nancy’s deafness would never be used as an excuse or a barrier.
Of her upbringing Nancy recalls that, “When I became deaf, no hearing aid could help. I was brought up to think I was a hearing person with a hearing problem. My mother wanted me to continue communicating by speech and lipreading. She encouraged me to be independent from a young age. I was keen on all sports, joined a local swimming club and so on.”
She had been at the local public school for over a year and had developed strong language skills before she became deaf. In a sign of the times, the school refused to take Nancy back after she became deaf. She was then enrolled at the NSW Institute for Deaf and Dumb Children. Nancy remembers that her classmates were 2 or 3 years older than her. She was not taught sign language or finger spelling and was extremely isolated. Nancy has vague recollections of other students finger spelling and signing. She was at the school for only one term before her parents enrolled her in a private girls school that was closer to home. She was to remain at this school for 9 years and loved it.
Nancy explains that while she was at this school, “I was the only deaf girl. I was never bullied or teased. I didn’t receive special treatment from teachers (as far as I was aware). I was Dux of Junior School and represented my school in all available sports.”
For her final two years of schooling Nancy attended a larger private girls school. At this school she had to work much, much harder. It was to be a valuable lesson for her and prepared her well for her university education that was to follow. Despite her desire to go to university it appears that the school was extremely sceptical that she would be able to do so.
Nancy was the first deaf woman to enrol at any university in Australia. She enrolled in, and graduated from, the University of NSW with a science degree. She was only the second deaf person to obtain a degree after Dr Pierre Gorman. It is interesting to note that Nancy’s Great Aunt was the first woman to graduate in Science from an Australian university. Being the first must be a genetic trait of her family.
She received no special assistance from the university. She copied notes from the students next to her. Indeed, Nancy recalls that some of her lecturers did not even know that she was deaf. Despite these obvious challenges, Nancy graduated with a distinction in Zoology. The year was 1962. Nancy later went on to achieve a Master of Rural Science in Genetics from the University of New England.
It is worth remembering that Nancy achieved all of this at a time when there was no access to Auslan interpreters or captioning. Her academic achievements occurred through sheer hard work, grit, and commitment. She relied on notes from her fellow peers and her own reading to reach the enormously high standards that she did. The author of this piece can only imagine the other communication challenges that she must have faced when interacting with her peers and fellow academics.
It is a far cry from today where, if our politicians forget to book interpreters for media conferences, protests ensue. That is not to say that these protests are wrong or petty, rather it puts into perspective the magnitude of Nancy’s achievements. It is truly awe inspiring.
Nancy’s academic achievements were followed by a glittering career. Below is just a small selection from her resume:
CSIRO Animal Genetics for 4 years as Laboratory Assistant while part time Uni student.
NSW Dept Agriculture Tick Research Station 1 year Post graduate Scientist.
St. Bartholomew’s Hospital, London about 4 months. Medical Research Scientist
St. Vincent’s Hospital, Sydney Clinical Biochemistry Dept –Scientist
A short stint as a gold assayer in Townsville
Royal Brisbane Hospital Clinical Biochemistry – Scientist
UQ Faculty of Medicine – Cardiovascular lab at Prince Charles hospital – Research Scientist
UQ Faculty of Pharmacy – Research Scientist
UQ Faculty of Biochemistry – Senior Research Scientist
Casual work at Qld Archives, and private historical research for a client which involved visiting archives across three states
All of this without access to communication support of any kind. No JobAccess, no NDIS, no captioning, no interpreting – just sheer talent, determination and hard work. From her quiet determination and incredible achievements, Nancy demonstrated to Australia what people who are deaf, or who have disabilities, could achieve. In doing so she raised expectations and lay a path that other deaf people and people with disabilities could follow in the years to come.
Nancy, together with her first husband Geoff Hoffmann, bought an old pearler, The Cornelius, in 1973. Recalling the purchasing of this boat Nancy tells the story:
“In 1973 the Englishman who I had met in London finally proposed, on condition I sold my sports car and helped him buy a large old sailing boat! I took 6 months leave to help sail the boat from Broome to Sydney. We lived on board for some time but eventually moved into a small flat while continuing to work on the boat almost every evening.”
The two of them moved to Bowen, Queensland, where their daughter Nicole was born in 1977. The three of them circumnavigated Australia from 1980-1981 with a small crew of friends. It was a real adventure. Nicole was to fall overboard three times and needed to be rescued, once from a crocodile and snake infested river. More about this adventure has been revealed in “The Cruise of the Cornelius” which was published in 2021. Sadly, Geoff died from melanoma in 1983, leaving Nancy to raise their daughter on her own.
Nancy found the Deaf community very late in life. She recalls that at the age of 48 she could only remember meeting one other deaf person through her mother when she was much younger. She recalls that she was shocked because the deaf girl would openly reveal to others that she was deaf. Nancy had always been taught that she was basically a hearing person with a hearing problem. To meet someone who would openly declare that they were deaf was a bit of a shock to her.
Nancy discovered the Deaf community while she was living in Townsville. She had been looking for something to do and was told about a teacher of the deaf at the local primary school. She met Ray Hildson who told her that she could only help with the Deaf community if she learnt sign language. At the time Nancy had recently had her first cochlear implant. So, at the age of 48, Nancy began to learn sign language for the first time with Doris Boyle.
Nancy learnt of the Deaf community’s rich history, its culture and its language. She was amazed to learn about Deaf sport and the Deaf Olympics. She had always been a keen sports person but was only involved with hearing sport. For her to learn of this rich and vibrant community that had its own language was a real eye opener.
In 1989 Nancy moved from Townsville to Brisbane with her daughter. Nancy saw a newspaper article on the works of Professor Heather Mohay whose published works focused on deaf children and their development. Through Professor Mohay she met Deaf community member, Leonie Milton, who was working for the Professor at the time.Leonie and her husband Ian invited Nancy to a BBQ where she began to meet other deaf people and professionals in the deafness field including Breda Carty, Bobbie Blackson and her hearing husband, Len Bytheway. Through these early friendships she began her extensive lobbying and advocacy for captioning and the National Relay Service.
Bobbie Blackson recalls:
” When I first met Nancy, I could see her fierce intelligence. She was very unassuming, not given to talking about herself because she is a very private person. Over a period, I learnt of her incredible achievements. Her academic achievements, her career, her parachuting, her sailing … I was in awe!! “
While Nancy was living in Townsville, captioned TV was starting to roll out in Australia. Nancy purchased a TV that would allow her to view captions. She was very frustrated as there were very few shows with captions. At the time, very few TV shows outside of Brisbane broadcast captions. One of the only TV shows captioned was the British TV show, Eastenders. Her daughter, Nicole, explained that there was some moderate teasing around having to watch such a trashy show. However, because it was one of the only shows with captions, it was a high priority.
Cyclone season in Townsville could be a time of danger. The lack of captions meant that Nancy had no access to emergency announcements. The TV only showed two words in huge block capitals, ‘Cyclone Warning!’, and the rest of the announcements were only spoken. Daughter, Nicole, remembers: “I did a lot of interpreting adult things and I got quite grumpy about it”.
These were the early inspirations that motivated Nancy to want to lobby for improved captioning access. She became heavily involved in the NWPC (National Working Party on Captioning) which was supported by the Australian Caption Centre. She was to be the first Chairperson of NWPC for two years. Nancy was the Queensland representative. She was to spend many years lobbying for improved access to captioning. She gave much of her time to raise awareness and run workshops all over eastern Queensland about captioning, including Communication Access Realtime Captioning. (CART). Much of this was done as a volunteer and she often took leave from her day job as a researchscientist at the University of Queensland.
Old timers, like this author, who are Deaf or hard of hearing, will remember a time when there were virtually no captions on television shows. They will recall a time when things improved so that free to air TV stations had to show captions from 6pm to 10 pm. Today we have captioned TV for almost every show, 24/7.
University students who are hard of hearing, who do not sign and could not access Auslan interpreting, had no access to captioning. Through Nancy’s early lobbying efforts, awareness of CART and its applications began to increase. Now university students get access to Live Remote Captioning through a variety of providers such as Bradley Reporting, Red Bee Media and Ai-Media. It’s now provided through the internet and has been a life saver for many people working and studying through the pandemic. We have a lot to thank Nancy and those early captioning pioneers for. They put an enormous amount of work and dedication into improving captioning access.
Nancy’s voluntary work and lobbying were not limited to captioning. She was involved with Deaflink and was heavily involved with setting up the National Relay Service, including the establishment of the initial offices. She was secretary of Deaflink in its final years before it evolved into Australian Communication Exchange (ACE) and the National Relay Service (NRS). She was to remain on the ACE Board until 1999.
In 1988 Nancy received her first Cochlear Implant. In her own words:
“I had, after all, been totally deaf for 42 years. I was warned not to expect too much – probably just environmental sounds – and encouraged to meet and/or correspond with a couple of other people with whom I would be similar. Actually, due to my ears being stuffed up with bony growth I ended up being one of only 8 people in the world at the time with an extra-cochlear cochlear implant, thanks to an innovative surgeon willing to give me a go. It took a long time and lots of hearing practice but eventually I could distinguish some sounds – but understanding speech has always eluded me. The implant did help with lipreading and a great improvement in my voice, giving me the courage to speak to a roomful of people.”
Of course, Nancy being Nancy, having a cochlear implant was not enough. She had to use her experience to help other people who had an implant. She was involved with the cochlear implant advocacy group Cochlear Implant Club and Advisory Association (CICADA) She established the first CICADA branch outside of NSW. In 1997 she was awarded The Quota South Pacific Scholarship to present at an international conference on cochlear implants in the USA and also at a US state conference. Part of the scholarship also involved attending an international conference for HOH people and investigating real-time captioning methods. (A history of CICADA can be viewed here – https://cicadaqld.org/history )
OH! – and did I tell you she was also a Board member of the Queensland Deaf Society where she was instrumental in introducing CART for all Board meetings. She assisted at Deaf Deaf World workshops too, training the early relay service TTY operators. All of this, and she started when she was 48!!
In 2000 Nancy resigned from all her commitments – ACE, QDS, NWPC and CICADA and moved to New Zealand. She moved to be with Dave Gibb, whom she was to marry in 2004. Dave has two cochlear implants. Nancy explains her motivation for travelling across the ditch:
“… the reason I came to NZ initially was to have a ride on Dave’s huge Italian MotoGuzzi motorbike after daring someone else to do so – and she did, to my utter surprise – so I had to do the same! A planned short 5 day visit morphed into 3 weeks motorbiking from one end of NZ to the other. My posterior has never been the same. About a year later I moved over for good.”
In New Zealand she has had little involvement in the Deaf community. She lives a relatively quiet life when not touring the country with Dave, a caravan and a dog. Nancy is currently researching and writing about her family trees and is on track to publish her second and third family history books, having already published 15 photography/travel books privately for family and friends.
Nancy might be across the ditch but we here in Australia have not forgotten her. We all owe her a depth of gratitude for her work and commitment to people who are Deaf and hard of hearing. Thank you, Nancy. You are one of the unsung heroes of the Australian Deaf and hard of hearing communities,
We will never forget you, OUR NANCY
With thanks to Bobbie Blackson and Nicole Dunbar (Daughter) for their assistance in writing this piece. Thank you, Dave and Nicole, for keeping it a secret when we reached out to them. Thank you, Nancy for giving your time in being interviewed. It was an honour.
Apparently, Price Waterhouse Coopers (PWC) found that mental health has overtaken the cost of living as Australia’s biggest concern during the Pandemic. The Sydney Morning Herald Editorial, July 20th, 2021 highlighted this issue. It listed numerous reasons for this. Kids at home being bored, parents juggling work from home with home schooling, being in constant close proximity of each other, isolation, boredom and so on. All of these things had, and continue to have, an impact on our mental health. Apparently demand for Mental Health Services has not increased all that much during the Pandemic. It is attributed that this is because people choose pretty much to go it alone and not seek help. I wonder if this is the same with the NDIS.
People may scoff at the suggestion that the NDIS is adversely impacting on disabled peoples mental health. If you are a regular reader of the NDIS Grassroots Page you will come across many people posting comments despairing at the decisions that the NDIS make. Often there are angry posts about delays, cuts in funding, need for constant reviews, lack of communication and so on. The uncertainty of process and the complexity of the NDIS system are causing anguish to people with a disability. It is very real, even traumatic.
I assist quite a few people who have been “shafted” by the NDIS. I realise that this is a strong word but sometimes that is how it feels. The first one that I ever assisted came to me in tears. Like a lot of people with a disability she has had to fight for many things. Whether its education or equal access and inclusion at work she has had to fight for it. She, like many of us, expected that the NDIS would be on her side. To find that it wasn’t came as a big shock.
So anyway, she came to me in tears. She is deaf and received a bizarre plan. It totalled $5000, of which half was to fund a plan manager. There was about $1800 for an assessment for low cost technology that had been funded to a total of $800.
Let’s be clear on this. Of a plan of $5000 only $800 was allocated to purchase anything of value for my friend. The rest was going to a plan manager and someone to assess how she could spend that $800. Her expectations of the NDIS had been high. To get such a pathetic plan was like a dagger to her heart. She was rightly upset. She needed interpreting, she needed technology, she needed communications devices as well as OT support to identify the technology that she required. The $800 did not even scratch the surface of what she needed. Hence, her tears.
We went for review and put in a complaint. She was understandably reluctant to even do a review. She didn’t want to have to face the trauma of being knocked back again. Luckily she did and upon review she received a much improved plan. But at what cost? Not just money and time but stress and worry on her part. It should not be this way.
I wrote about this in The Rebuttal last year. On publishing this article I received an influx of requests from people, mostly deaf, who had received terrible plans. Reviewing these plans is not a straight forward thing. It often requires more reports. More visits to the doctor. More visits to the therapist. It requires many hours to carefully craft reviews in such a way as to get the NDIS to change their mind. Mostly, it involves frustration and worry for the participant. It is demeaning to have to constantly justify your needs because people in the NDIS stuff up.
Some of the decisions are just pig headed. Not helped by the fact that decisions are inconsistent. Many deaf people are requesting a system known as Visualert. They want this system because it provides them with a high degree of safety in their home. It provides them with visual alerts to the fire alarm, the doorbell and even CCTV. It does this through a system of colour coded alerts that are hard wired so that the Deaf person knows whether it is the fire alarm going or the doorbell ringing.
It is my strong view that this is one of the best systems on the market. Not only that, it is a system that gives the highest amount of safety. It is more expensive than other systems but you get what you pay for.
Legislations state that hearing people must be able to hear an alarm from various points in a home, including outside. It follows that a visual alert system must be seen from as many areas of the home as possible, including outside.
Recommendations for alarm systems are that they be hard wired and with back up battery should there be a blackout. They should not rely on power alone. They should not rely on batteries alone. They should not rely on the internet or wearing of a pager that can be broken or forgotten. They have to work ALL THE TIME!
Visualert is the system that best meets this need, in my view. It is why it is being increasingly recommended by occupational therapists. Some people are being approved, most not – because the NDIS deem it as too expensive. What price do you put on human life? I ask you.
I am assisting a few people to appeal who have been declined this system. They are are being made to jump through hoops. What surprises me is that I have witnessed NDIS lawyers actually lying on behalf of the NDIS at AAT.
One lawyer claimed that they had appointed their own occupational therapist to gather evidence. They claimed that they were going to fly them interstate to carry out the assessment in the persons home. This was an outright lie. At all times they have suggested, by email, that the assessment would happen online. (The participant successfully argued that an online assessment was not appropriate and that it needed to happen in the home.)
Upon being directed to find someone in that State to do the assessment in the home, the NDIS delayed finding someone. They had to be reminded that they had been given a three week time frame to do so. They found someone then emailed and said that person couldn’t do it anymore and reverted to their original therapist and doing it online. When told they had been directed to find someone to do it in the home they claimed that they had only been told to, “Explore the possibility.”
This whole process has taken 5 months and is still going with no end in sight. Meanwhile, the deaf person has no safety at home. They are stressed and they are constantly being told to attend meetings, give up time at work and to no avail. Imagine the impact on their self-esteem that the NDIS will quibble over a few thousand dollars on the matter of their safety. Yet, the NDIS will spend millions to try and win cases at the AAT – A large proportion of $23 million last year it seems.
The other big thing that the NDIS often do is deny Auslan to families and individuals. Sometimes they give it and then they take it away. They give any number of bizarre reasons for it. They will say that its the Education Departments responsibility. They will say it is a parental responsibility. They will say the family need to pay for themselves to learn. They always fail to understand that Auslan is a language that can be crucial to human development. Particularly for young deaf kids.
I have had some success in getting Auslan restored for families. I do this by getting strong reports that outline the language milestones, psychological benefits, impacts of interacting with family on language development, consequences of delayed language development and so on.
One time we got $8000 of funding restored because, apparently, the NDIS had just forgotten to put it in the plan. Imagine the parents despair at having to spend $5000 of their daughters plan on new reports because the NDIS forgot! Notwithstanding the unnecessary expenditure! Worse, the delay in language development in the child and the cruel stress and worry that they have placed on the parents. It is unacceptable.
In a recent case I have been supporting a person with multiple disabilities to have their Auslan funding restored. They are mostly bedridden. They are deaf and they sometimes, in moments of stress, lose their function of speech. They wanted Auslan so that they could communicate smoothly with their family and support workers, particularly if they lose their function of speech. This can happen at anytime.
Obviously, not being able to communicate causes them a great deal of anxiety. The anxiety means that they are constantly on edge. It exuberates some of their existing conditions and can make them quite ill. Auslan is their safety net. They, their family and support workers need to learn it as an alternate communication method.
But Auslan funding was removed. Bizarrely the NDIS delegate deemed that learning Auslan was harmful to the person. The NDIS said that learning Auslan would make the person more stressed and tired. In turn this would worsen their condition. They justified this with the argument, and I kid you not, that interpreters are only allowed to sign for an hour at a time.
And so begins the fight to have the persons funding restored. Meanwhile, the stress and anxiety being placed on the person is impacting on their health and mental health. Meanwhile, by cutting the funding this delays the learning of a much needed alternative communication for the person and their family. Why? Because the NDIS are seeking to cut costs based on a value judgement that has no basis in fact!
It is a disgrace, probably not helped by the fact that the Auslan service provider quoted near $9000 to support this person learn Auslan. Greed or bad management on the service providers part? – Whatever the reason, $9000 seems excessive to me.
These are just some of the real life situations that people who are deaf and their families are confronting everyday through the NDIS. The stress and the impact on their mental health is very real. Many actually just give up because the stress is just too great.
They have been fighting all their lives for minimal gains in access and this makes them feel extremely undervalued, even a burden. That Australia’s premier disability program is doing this to them is the last straw. It is a national disgrace!
I leave you with this cry of anguish posted on the NDIS Grassroots Page – It is printed with permission –
To The NDIS I have committed the most heinous of crimes.
My crime being a Person with Multiple Disabilities.
Guilty on all accounts. I don’t deserve to be treated with equality!
I don’t deserve to be alive.
Ino longer contribute to society as I once wasableto as an able bodied person.
I don’t deserve services from allied health professionals, supportworkers.
I don’t deserve to be treated as a whole person.
I don’t deserve to be listened to and heard.
I’m defeated! I’m tired, I am mentally, emotionally and physically drained.
I am a bludger, I am a burden,
How dare I wish for quality of life, to be part of community.
I am an empty shell.
Don’t worry I am completing my Advanced Health Plan.
NDIS. You will be pleased to know that I opt not to be revived.
This is how far I’ve been pushed.
I thank the person for allowing me to publish this. I dare say many in the NDIS, including the Minister, don’t care. One less is one less cost. !
I have never met you. Until this year I had actually never heard of you. A certain Ms Higgins brought your name to the fore. Among other things I found out that you were the Minister of Defence. You came across as pretty feisty, even going as far as calling Ms Higgins a liar and comparing her with a female of the bovine family. It seems that the stress got to you and you became quite ill. I sincerely hope that you are well now and on the mend.
What I am about to say may hurt, even make you angry, It is possible that you will even compare me to an animal and and label me any number of things that might include a liar, shit stirrer, A/hole or whatever. I understand that your job is thankless and that toeing the party line is something that you must do, even if you do not agree with it. I get it, and I don’t want to get personal. However, I fear that I will.
I am angry and very frustrated with ongoing comments about the “cost blowout “of the NDIS. I am tired of hearing it. As a person with a disability I am also tired of being labelled a burden to society, which I assure you, I am not. I am exasperated that no one in Government ever talks of the benefits of the scheme, and not just for people with a disability. As the Minister responsible for the NDIS, I and the Disability community expect you to be across this.
Let’s be clear, although the NDIS is expensive, it also contributes. It is creating employment, It is creating new markets. It is creating opportunities for greater economic input from people with a disability, their families, their friends and their colleagues. Indeed there is a figure in the old Productivity Commission Report about the NDIS that neither you, or anyone in the Government that you work for, ever mention.
You will see that the report estimated that the NDIS would increase the GDP by 1% and that the benefit was not just good social policy but good economic policy too. As the Minister responsible for the NDIS I expect you to talk the NDIS up, not down. I expect that you provide us with all the figures, not just the outgoings!! (Read this Ms Reynolds, it is hidden away in the NDIS own archives )
I am also frustrated that a lot of the unnecessary costs that you talk about are actually the result of having a workforce, including you as Minister, who don’t get the NDIS or disability. I assist NDIS participants to review their plans. This happens because decisions are made by the Agency that make no sense, whatsoever. You are fond of talking about inconsistencies. Let me tell you a couple of home truths.
Firstly, inconsistencies happen because no one person has the same needs. In my case I am deaf. I don’t need hearing aids because I am too deaf. My deaf friend up the road does. But she needs a specific hearing aid for her particular hearing loss. They are above the standard costs of hearing aids and needed because standard hearing aids will not assist her. She is socially and economically isolated because she has had to adapt to her hearing loss as she is latter deafened. Her NDIS plan is necessarily more expensive than mine as her needs are different. That’s how it works, there is no one size fits all.
Inconsistencies occur because a lot of the NDIS workforce, including you, don’t get this. As a consequence they make absolutely bizarre decisions that are constantly going for review. So bad is it that the NDIS reviews team cannot keep up and people are waiting months and months for decisions. Often they end up at AAT with all of the fat cat lawyers. Was it $23 million that the NDIS forked out on legal fees last year, much of it trying to defend some of the bizarre decisions that they make. If you want to investigate costs, look at the decision making process area first and don’t blame people with disability.
I have said it often, when the NDIS get it right it is a game changer. Thankfully this does happen a lot. However, there are too many crackpot decisions being made by people that do not know what they are doing, including a succession of Ministers like you.
Your first argument was that it is the Autistic’s fault. Apparently, it was expected that kids who are autistic would leave the scheme at some stage and not need ongoing support. They enter the NDIS as babies and they don’t exit when they are six. This means, according to you, there are more people with Autism on the scheme than anticipated and its expensive. This is why you need to employ people that get it. I despair!
I mean, what did you and they expect? That kids with Autism would get therapy and suddenly become “All Better” I am sure, in fact I know, that there are some that need less support over time. I know that there are others that continue to need support because our world is simply not designed for the way that they see and experience the world.
Like me and my deaf friend, people with autism don’t all experience autism in the same way and their need for support varies greatly. I dare say, a society that tries to make everyone fit the norm causes a lot of actual harm through the so called therapy. This, in turn, leads to the need for even greater support. It’s not the fault of people with autism that they require support, its the fault of a society that tries to mould everyone in to one size fits all. Please stop blaming them.
Then you said that when people with a disability get old and go past the age of 65 they are choosing to stay on the NDIS rather than go to Aged Care. This might be because Aged Care isn’t really designed for people with a disability in the same way that the NDIS is. The law is clear, if you are over 65, have a disability and are not on the NDIS you are not eligible. It is equally clear that if you are an NDIS participant and you turn 65, you can decide to remain on the NDIS or go to Aged Care.
This means that many people choose to remain on the NDIS rather than go to Aged Care because they know Aged care will not meet their needs. Why are you surprised? That’s the law and why it was written. Please stop blaming people who are turning 65 for making a decision that they see as best for them!
My favourite is that it is the fault of the obese. Apparently, there are too many people on the NDIS that are getting support because they are obese. Let’s be clear, obesity is not a disability. Any person worth their salt and works for the NDIS knows this. It is a medical condition. BUT!
Some people who are obese have resulting and permanent physical disabilities. As a result they may need equipment and support because of those physical disabilities. Obesity is not the disability, but the other physical conditions are.
Some people who have disabilities become obese through poor nutrition, social isolation and lack of physical activity. These people need support for their disabilities and this may lead to better nutrition and more exercise. This, in turn, may actually assist them to address their obesity.
BUT, lets be clear, it is the disability that is funded not the obesity.
This rationale that I have explained is what happens when you get it. This is what happens when you understand disability. I dare say, if anyone in the NDIS has classified obesity as a disability, well they need to review the legislation. It will be clear that obesity is not a disability but obesity may cause disability and visa versa, disability may cause obesity. Blaming people who are obese for some of the NDIS so called “cost blowout” is the most bizarre thing that I have read so far. And it came from you Minister Reynolds. That is scary!
I know that some of this will hurt and anger you. But I am hurt and I am angry too. I ask that you consider the points that I have raised. I ask, particularly, that you become more open minded of the broader benefits of the NDIS, that you acknowledge some of the internal reasons for “cost blowouts” and, more importantly, stop blaming people with a disability – That hurts!
This is Australia, as I am sure is most of the world. It has become fully automated. Phone calls are inevitably answered by robots. You call and any number of options are provided so that you can be directed to the right person. Often the right person is another robot who then processes what you need automatically. If you are patient, you may actually get to talk to someone.
In recent years Deaf and hard of hearing callers have been able to bypass calling through the National Relay Service with the introduction of Chat. You could go to a website and send a text message and bypass the robot and actually deal with a person by text. The great thing about these Chat things is that they often allowed you to bypass long queues. So, where hearing people were waiting hours and hours to get a Telstra operator the Chat feature took you straight to someone.
Sadly, even these Chat features have now been replaced by bots. You are encouraged to ask Sharon:
S: What does your enquiry relate to?
G: I’d like to buy a new washing machine.
S: Front-loader or top-loader?
S: We have some fantastic deals for you, call 08 8258 8682 and one of our friendly customer service staff will be more than happy to explain your options.
I mean, fuck, one of the few advantages we Deafies had, hearing bums have managed to take it away from us.
This week I resigned from work. I work for the Centre of Disability Studies (CDS). I reluctantly resigned because CDS are a wonderful place to work. I accepted a Team Leaders role for a disability advocacy organisation. Covid has caused all sorts of problems getting to see my family because of lockdowns and border closures. The new job will help lessen this problem. And hey!, I am an advocate at heart, so the job is ready made for me.
The great thing about this new role is that it is part-time. Gives me some time to do projects. One such project is to do my Certificate IV in Assessment and Training. This will allow me to do some adult education, teaching at TAFE and pass on my knowledge. I found one at a company called Inspire. They offer it Online and are way cheaper than others.
So, as you do, I sent an online enquiry. And within 15 minutes they called me. I kind of knew it was them cos they were the last people I provided my number to on their online enquiry form. I waited a bit, unsurprisingly an email followed:
“Hey Gary. I know you have been trying to reach me about your Cert IV TAE course. Tried calling, but you didn’t pick up – so I thought I’d better get back to you ASAP. Gary, I have critical information about your Cert IV TAE for you. Please call me back ASAP at 1800 506 509.”
Of course, I replied that I was deaf. Could they please email me and that I would be happy to correspond that way. I didn’t hear anything straight away but when I awoke in the morning there was a missed call from them and another email:
“So sorry. Still haven’t been able to reach you. Really hoping we could connect before this enrolment window ends. The course options for your Cert IV TAE are really awesome at the moment, and I reckon the delivery of this course particularly may work well for you. Gary, is there a best time for me to call you to talk you through them? Alternatively, please call me back ASAP at 1800 506 509.”
And so, once again I emailed and said that I was deaf and that I could not speak on the phone. I asked that they email me the course outline and how the course was delivered so that I could then consider whether it was right for me. I was not confident that I would get a response because I was aware that these Emails were fully automated. For all I knew Manny was a microchip of some sort. (Readers, please don’t get technical with me, I am well aware of my limited PC knowledge :-D)
So, blow me down with a feather. Manny was actually a person and he did respond to me, and in person. He took the time to outline the course in more detail. I responded and asked Manny to outline a little more of the method of delivery. What tools were used, what media was used and so on so that I could then work out what adjustments needed to be made.
Sadly, Manny blotted his copy book, or at least Inspire did. They sent me another email:
“It was great speaking with you with regards to your goals for completing the Cert IV TAE. I know at this stage you are doing some research, which is totally fine. You definitely want to make sure this course is right for you before you enrol. Based on our conversation though Gary, the Cert IV TAE may be perfect for you. By studying with Inspire – you will gain instant access to our leading course delivery platform. As well as completing your course in style – you can complete it in the shortest possible time frame you can manage.”
Of course, I had not spoken to anybody. Not Manny, not a bot, not a chat bot – No one! I had, until that time, received just the one personal email. I was naturally quite peeved and my saracasm kicked in. I sent Manny the following email:
I know that you are restrained by your firms automated system. You just sent me an email saying it was nice to have spoken with me. We didn’t speak because I am deaf. I have, however, sent emails. One that you have responded to personally.
Manny, I am very interested in enrolling, which I assume will be a feather in your cap. However, being deaf I need to understand the structure of Inspires online course to be able to pin-point accessibility issues and address them. For example, videos without captioning.
So, in the meantime, if you can give me an idea of how the course is taught, in what mediums etc I can begin to ascertain what adjustments need to happen so that I can access the course.
Of course, being one of Australia’s largest providers, I am sure Inspire will be keen to assist me to make the necessary adjustments where possible.
I look forward to your response.
I can see a few people going, “OH GAZ, that was mean!!” Possibly it was, but sometimes this world that is built fully for hearing people, with no thought to others, just gets up my nose and I have to offload somehow.
As I write this Manny has just sent another email. And this is what he says:
As we specialise in online delivery, it will be pretty hard for us to cater to you as CERT IV TAE requires you to do presentations, listening to presentations, assessments tasks etc. I would recommend that you find somewhere who can face-to-face learning which may be easier for you”
And, of course, I have replied:
You are in luck. I am the co-author of Guidelines for Supporting Deaf and Hard of Hearing Students Online. Please see the attached link. You are in luck, you have an expert who can assist you to adapt your course, not just for me, but other students who are Deaf and hard of hearing.
Let’s get to work. I look forward to studying with Inspire!
As an epilogue to that last email from Manny, automated Manny sends me another:
“Gary, as you know you have actually enquired at a great time! Our ‘Pandemic-Support Initiative’ Sale is on now… Massively Reducing the Cost of your Course! This means that you can get started with one of the best prices we have offered. Remember, this sale is until 31st August only – so why wait any longer?”
LOOOOOL – This is Australia, isn’t it fun!??? Watch this space!