A Lesser Kind of Being

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 YOU ARE 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:

  1. Lack of plain English communication explaining why vaccination is important.
  2. Higher rates of susceptibility to misinformation through cognitive, communication and literacy issues.
  3. Lack of mobility and ability to attend any number of hubs.
  4. Fear of the unknown and lack of support to get vaccinated.
  5. 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!

Accessibility Through the Ages – A Technological Journey!

Image is a cartoon graphic showing two hands typing on a keyboard and how technology has developed so this keyboard can connect to a variety of online platforms … Like shopping, banking, entertainment and so on. The keyboard is connected to all these things through lines like a flowchart.

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.

The Mask, by Dr Linet Amelie Hilsberg

Image shows four people in squares. Two males and two females. They are wearing facemasks. The squares are different colours, blue, orange, red and green.

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!

Our Nancy

Image is a photo of Nancy. She has just completed a parachute jump. The parachute is pink, still attached to her person and laid before her. She is in a paddock and there are cattle in the background.

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 hesitationThere 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 research scientist 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.

The NDIS Epidemic

Picture is a drawing of a long haired woman screaming while holding her throat. Her eyes and mouth are obscured in the picture. It is black and white.

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. 

I no longer contribute to society as I once was able to as an able bodied person. 

I don’t deserve services from allied health professionals, support workers. 

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. !

Open Letter to Minister Reynolds

Image show two hands seemingly counting money.

Dear Minister,

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 )

PRODUCTIVITY COMMISSION REPORT

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.

Now let’s look at the blame game. It’s our fault you see. Us expensive disability folk are the reason the NDIS is not sustainable. (It couldn’t possibly be the ignorant ablebods screwing up the decision making could it?) Let’s look at some of the reasons you gave in a recent interview – You can read it here if you want to remind yourself – https://www.news.com.au/national/politics/minister-warns-ndis-will-outstrip-the-cost-of-medicare-in-two-years/news-story/3c2196792b7fd771161991548a4a2dca

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!

  1. 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.
  2. 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!

Thank you for reading. That is all!

Kind Regards

The Rebuttal Team

This is Australia!!

Image is of a man at his laptop. He is clearly frustrated. His spectacles rest on his head while he rubs his eyes and nose with one hand in obvious tension.

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:

G: Hello?

S: What does your enquiry relate to?

G: I’d like to buy a new washing machine.

S: Front-loader or top-loader?

G: Front-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:

“Dear Manny

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.

Regards

Gary”

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:

Hi Gary,

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:

“Dear Manny

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!

https://www.adcet.edu.au/resource/10475/guidelines-supporting-deaf-and-hard-of-hearing-students-online “

Sincerely 

Gary”

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!

Michael Lockrey – Palindrome Man

It was a glorious spring day in Adelaide around 2001. The tennis was on. Deaf tennis, that is. Glen Flindell thrashed all and sundry that weekend. He went on to dominate Deaf tennis in Australia and the world for many years to come. I think he is over 40 now and still can’t be beaten. At this tennis tournament I met a balding and jolly man called Michael. He signed haltingly and with some difficulty. He struck me as a jovial, gentle and genuine human being. Over the years, he would seek me out at various sports events or Deaf conferences. He was always pleased to see me and always friendly. We were not close friends but we had a mutual respect for each other based on our love for sport and equal rights for Deaf, hard of hearing and all people with disabilities.

Michael was born at Crown Street Hospital on the 28th of December, 1968. He grew up in Blaxland in the Blue Mountains. His father, Lyn, recalls fondly that even at an early age, Michael loved sport. “He was a bonny young lad who loved kicking his rubber ball up the hallway, yelling DOAL DOAL DOAL.

Around the age of two and a half, his parents noticed signs of hearing loss in Michael. His hearing deteriorated very quickly. Initially it appears Michael had a moderate hearing loss, possibly from mumps. As he grew older and entered primary school, his hearing loss reached a point where Michael was profoundly Deaf.

Michael was a resolute human being. Recalls Lyn, “He was determined to succeed. He would often come home exhausted from his effort to keep up with his peers.” Lyn’s pride in his son is on show for all to see. “…Michael did extraordinarily well, despite hearing almost nothing.” With support from his itinerant teacher for the deaf, he gained his high school certificate in 1986.

Michael enrolled in business studies at Southern Cross University. He graduated with a number of high distinctions. It appears that Michael had some support from the university. His father, Lyn, thinks he learned mostly from what he read and what he saw. Lyn tells the story of a vision impaired man who Michael befriended and who was studying the same course. What Michael saw on screen or in lecture, he would note. What his vision impaired friend heard, he would note. At the end of the lecture, they would exchange notes. In this way, they supported each other throughout their studies.

Michael graduated and started work as an accountant. He was successful at work but he had his struggles. Those struggles really opened his eyes and inspired him to lobby and fight for equal rights around accessibility for people with a disability.

Along the way, Michael found the Deaf community. This really changed his life and perceptions. Writing in The Rebuttal in 2010 he had this to say:

I was schooled in the lipreading /auditory approach from a very young age. It was certainly effective – as I can still recall meeting my first Deaf (signing Deaf) person in my teens and I really thought that I was nothing like him and that I was really a “hearing” person! Obviously, this was a fallacy (and a half)!

My biggest personal regret of my life to date is that I didn’t learn Auslan until I was 30! Looking back over my life I can see countless missed opportunities – both professionally and personally – as I simply couldn’t measure up as a “hearing” person. 30 years of butting my head against a brick wall in the mistaken belief that I could be a “hearing” person (when I was profoundly Deaf)!

Michael, like many Deaf and Hard of Hearing people, entered the Deaf community well into adulthood. It was not until he was 30 years old that he started to learn Auslan. Lyn recalls that there was one Christmas that Michael was hit by the stark realisation that his hearing loss had deteriorated to the point that he could not hear nor lip read his mother effectively. From there, he researched deafness and solutions and came across the Deaf community.

Of this journey, Lyn had this to say:

This became a turning point for him. He resolutely faced the challenges and sought solutions to the many  issues  concerning inclusion, fairness, accessibility and justice for people with disabilities and in particular for the Deaf and hard of hearing. He became a fierce advocate for them on a number of fronts. He developed the ability to view life, it’s challenges and solutions from two worlds, the hearing and the deaf. Hence, I think that’s why he used the term, “The Palindrome Man”. Fairness, justice, inclusion, accessibility, equity, being seen and experienced, “the same”, from both ends of the spectrum.

My own recall of Michael is as a supremely intelligent, compassionate and empathetic human being. His friend Barney Lund agrees: 

I remember my Mum, Hillary Mcpherson, saying to me that I should meet this guy Mike who owns a 10 seater bicycle and who is also Deaf. I never did get to see the bike but I did get to meet a really down to earth guy with a great sense of humour. 

I didn’t really get to know him well until after we connected at the World Congress on Mental Health and Deafness in Brisbane in October 2009. . I had never really had much contact with other deaf people growing up, so it was really nice to meet someone with some common interests and experiences. That chat with Mike and attending the Mental Health and Deafness Congress were two really pivotal moments for me. A lot of the issues I experienced as a kid and young adult started to make sense, and also helped me to connect with more of the Deaf community in Brisbane and on the Northern Rivers. I will be forever grateful to Mike for taking the time to sit and chat that day.

Michael did many great things for Deaf and hard of hearing people. Perhaps he is best known as the chairperson for the Australian Communication Exchange, a position he held for 6 years. He campaigned tirelessly for the introduction of new technologies such as Captel. Barney recalls that Captel was a life changer.

At the time Barney was working for the State Government and struggling with the phone work. Captel enabled him to speak on the phone and he no longer had to struggle with accents and bad phone connections.

Barney credits Michael with having opened his eyes to the benefits of captioning. Through Michael Barney began to explore the use of live captions in work meetings. Says Barney: 

Mike and I thought live captioning had masses of potential for people like us who didn’t have enough sign language proficiency to benefit from Auslan interpreting alone. Live captioning has had a huge impact on my life ever since.

So much, in fact, that Barney works within the captioning industry. I can vouch for his knowledge, because he is my go-to person whenever I need advice or support around live captioning.

What is not so well known about Michael is his ongoing campaigning for captioning in all of its various guises. Barney explains that Michael had an end-to-end strategy around captioning. For example, Michael worked with young film makers to increase their knowledge of captioning and its benefits. Those filmmakers are the future and by making them aware of the benefits and how to caption, Michael knew greater accessibility would happen into the future.

Michael also worked with an American friend, Mike Ridgeway. Together they developed a platform called, NOMORECRAPTIONS. To explain, sometime ago Youtube introduced auto-captioning. Basically, this was technology that used voice recognition to caption videos. Voice recognition technology has come a long way since but back then it was terrible, and I mean terrible. If you want a trip down memory lane, watch this video.

Through the platform, Nomorecraptions, the user could take the Youtube auto-generated captions and correct them so that they made sense. Michael and his friend made this platform freely available so that people could improve the accessibility of their online content.

Barney recalls how Michael and his father, Lyn, lodged countless complaints to the DDA about the lack of captioning, particularly around online content. They took on the likes of Apple and Barney believes that because of their determination, all of us Deaf and hard of hearing folk are benefitting today: 

“I am not sure how many complaints they filed, but I am pretty certain their work has helped pave the way for far better online access today.”

Lyn proudly tells the story of how Michael took on Malcolm Turnbull, the then Communications Minister, and won.

He lodged a Disability Discrimination complaint with the Australian Human Rights Commission against the former Communications Minister, and later Prime Minister, Malcolm Turnbull. It concerned the use of auto-captions on government YouTube videos and the need to comply in having correct, closed captions on all government videos. It was resolved in 2017 with the Office of the Prime Minister committing to ensure all its future videos would now be accurately captioned prior to posting to the web. “

In 2010 Michael won the prestiges Roma Wood OAM Community Award, for his advocacy and innovative work with captioning.

I had many a debate with Michael about the benefits of Captiview. For those that do not know, Captiview is a device that you can get at the cinema that you place in your drink holder to view movie captions. The only problem is that it was and is, rubbish. So much that the Deaf community dubbed it, and continue to call it, Craptiview.

I was a staunch critic. Michael was more middle of the road and wanted to give the technology some time to settle in and develop. He was far more level-headed than I. I wrote countless articles against Craptiview, voicing the views of many in the Deaf community.

One thing that Michael and I both agreed on was that Open captions were the best. Michael campaigned relentlessly for Open captions in cinemas and was instrumental for open caption sessions being introduced in Ballina. He regularly posted on Facebook to advertise these sessions.

In later years I enjoyed following Michael on Facebook. I smiled at his surfing videos. I smiled at his videos going fishing with deaf mates on the boat (I swear he looked seasick). I loved his tireless promotion of deaf poker. He was into everything and supported so many people and causes.

Proud father, Lyn, talks about these causes. There was online captioning for which he is generally known. What is not as well known is that Michael campaigned to have Deaf and hard of hearing people be allowed to do jury duty as is commonplace in the USA. Michael staunchly insisted that jury duty was possible using either interpreters or captions that are generated by the court stenographer. He and Gemma Beasley took their case all the way to United Nations Convention on the Rights of Persons with Disabilities. This was the outcome:

CRPD Committee held that the refusal to provide steno-captioning in court and in the jury-room violated the access to justice requirement of article 13 of the CRPD. The CRPD Committee further held that the failure to accommodate violated articles,  5(1) and (3) which prohibit discrimination, and also article 9 which ensures access to communication.

Sadly, State Governments around Australia still refuse to comply. The governments argue that the captioner or Auslan interpreters bring their own interpretation to the proceedings and thus constitute a 13th member of the Jury. It’s bollocks, we all know, and it is a fight that we must all continue.

This is Michael Lockrey. He was one of Australia’s great and unsung Deaf advocates. His achievements are enormous. Believe me, I have only touched the surface of what he achieved in his short time on this earth.

Michael contacted me in September of 2020. He wanted me to work with him on training paramedics around communication with Deaf and hard of hearing patients. Sadly, Michael passed away suddenly on the 24th of November 2020 and we were unable to work on this project.

I wish I had known him better but I was honoured to have known him. Like many, I miss him. We all should, because he was a real fighter and credit to all people who are Deaf and hard of hearing, and indeed all people with disabilities.

But mostly he was a credit to himself and his family. As his children said to their Nanna and Pop:

“Our Dad was the best dad you could have asked for”.

Ill leave you all with these beautiful words from his father, Lyn:

The other day I looked at his trophies that have been stored away in a box and thought about Mike and I penned this line,

“Life’s greatest trophies are the friendships you’ve made and the way you’ve played”. On Ned Trickett, his great grandfather’s grave appear the words,

A man justly honoured by all who knew him

a noble type of sportsman, 

an equally noble type of citizen”, 

Michael, you’ve taken after your great great grandfather, 

God bless you and rest you in peace, dear Palindrome Man.

With thanks to Michael’s father, Lyn Lockrey, and his friend , Barney Lund for generously sharing their cherished anecdotes of Michael the person and Michael the advocate. Mostly, thank you for trusting me with his story.


 

Australia’s Favourite Advocate

That’s me you know. I have anointed myself. I cannot come to any other conclusion. I know it sounds like I have tickets on myself, and I probably do, but everyone seems to be asking for help at the moment. You have to ask whether our paid organisations are actually missing in action.

Now let’s be clear. I sometimes get paid for the advocacy work that I do. Sometimes I don’t. I work full time, not as an advocate. Often people or families simply do not have funds to pay. Nevertheless, I will still help them. You cant really leave them in the lurch. I will disclose, however, that I often say to people to contact X, Y or Z. They often tell me they did but got nowhere, or worse, that no one got back to them.

I willingly help. It isn’t a stress really. It helps me flex a bit of brain muscle and adds a bit of spice to my life by way of variety. Let’s look at a small sample of what I did in the last two months.

  1. Helped family review their daughters NDIS plan and have Auslan training funding reinstated. (The NDIS apologised and said they forgot to put the Auslan in .. PFFFTTTTTTT!!!! )
  2. Helped man B do a change of circumstances review. Arranged for new evidence by way of report to be made which looked at legislation and compliance. This was for the much vaunted Visualert system that the NDIS dont want to pay for. The team won by the way …. Yes we did, GO TEAM (Team was me, audiologist, OT, participant and his family.)
  3. Just today sat through an AAT appeal where the NDIS wanted the treating OT removed from the hearing and new evidence be submitted by their “Expert OT”. NDIS sought direction from the Tribunal and the Tribunal found in favour of the participant. The NDIS lawyer couldn’t even get the name of the OT right and contradicted themselves three times. It was pure incompetence.
  4. Assisted a man with his Workcover appeal and to get his workplace to recognise his skills and abilities. They agreed to provide him with meaningful work that was commensurate with his abilities. The man was very stressed but I have to say his workplace were wonderfully accommodating and understanding. He is now back at work with a new team and meaningful duties.
  5. Assisted an organisation to write a community impact statement for a scholarship program that they were developing. I could have charged for this but the CEO is a great mate so I was more than happy to help. it was to do with Auslan, so hopefully they will get what they ask for.
  6. Unsuccessfully tried to get Auslan interpreting for three deaf people that want to do training through a private training organisation. The organisations cry poor. The NDIS say education is a State responsibility and won’t help … Meanwhile the three are in limbo while these arseholes shirk their responsibilities.
  7. And my favourite – I was asked to help out remote communities in Northern Queensland to assist them to get the most out of their NDS plans. All going well I take leave from work and fly up there for a week. (They pay the flights, but I have volunteered my time.)

That is just a little snapshot of what I am doing. I have left several examples off the list so as not to sound too bigheaded :-D. I raise these snapshots because clearly there is a need out there but organisations don’t appear to be hitting the mark. These people are from South Australia, Queensland, NSW, Northern Territory and Victoria – All over Australia. I am not saying that our paid organisations are doing nothing, but clearly there are many people falling through the cracks and something needs to change.

So as Australia’s self anointed favourite advocate I am going to offer our organisations some free advise. It’s free so they can either like it or lump it!

Here is my advice.

Firstly, on priorities:

  1. Employment sucks. people with a disability in Australia still are grossly underrepresented in the workforce. They are either not employed or underemployed. Even those that graduate have worse employment outcomes than able bodied people that graduate.
  2. People with a disability, people who are Deaf and people who are hard of hearing people have a right to access whatever training that they want. Whether it is State funded, a university or a private training organisation. Just today I got wind that a TAFE were trying to make deaf students use their NDIS funding to pay for interpreters to attend course information sessions. This is illegal under the NDIS agreement with State Governments. When is this shit going to end????
  3. The NDIS is paying more money to deny supports through their lawyers than the cost of actual supports themselves. They are putting people with a disability through enormous stress through reviews and appeals. Participants are waiting months and even years for resolutions. Who is doing any thing about this?
  4. Deaf and hard of hearing is a very broad church. They have a a variety of needs across many areas. Employment, Education, language acquisition, access to services, access to communication. For the latter, it is not just Auslan – A very small percentage of people that have a hearing loss use Auslan, who is speaking out for the very large percentage that don’t? Please do not get me wrong, Auslan interpreters are crucial, but who is speaking for the rest???
  5. Hospitals – Where do we start!

It is my view that all of the above are critical issues. Sadly, I never hear anything about them from our organisations. I never hear of how they are all working together to address these issues and bring them to the attention of the Government at State or Federal level.

Did you know, for example, that Auslan for Employment (which you can also use for captioning) has not increased since 2007/2008. Did you know that it is a flat rate of $6000 per year, no matter where you are. Whether you are in regional area or whether you are in the city, whether you are a professional or a McDonald’s worker – you still get only $6000. Did you know mine was spent in 8 weeks? Did you know that when I was working at the Brotherhood of St Laurence, that in 8 months the bill for two deaf staff was $84 000 and that I was told to find ways to cut back. (My suggestion that they have less meetings didn’t go down very well.) Yet I, and professionals like me, are supposed to survive on $6000 year! No wonder employment opportunities are limited!

My question is – Deaf Australia, Deafness Forum – This is clearly a crucial policy area that will lead to better employment outcomes for Deaf and hard of hearing Australians. Are you working together to bring this to the attention of the Government. Are you partnering People with a Disability Australia, Australian Federation of Disability Organisations or our rapidly expanding and increasingly wealthy Deaf Societies to do something about this? Hmmmmm?

Our NDIS is a mess. Deaf and hard of hearing participants have to jump through hoops to get basic safety technology. In some cases they are being denied interpreting. In some cases, unless they ask for it, Local Area Coordinators and planners don’t even raise the fact that they are entitled to it. Hard of hearing people are being told that Interpreting and Translating funds do not cover captioning (This is false.) Deaf and hard of hearing participants are CALLED on the phone by the NDIS everyday. When they don’t answer, they get a letter some months later asking them to contact the NDIS and that their already inadequate plan has been rolled over. They cant get hearing aids that they need. Parents that choose Auslan for their kids are being told that they cant have Auslan training because thats a parental responsibility (Again false) What are you all doing to address this? Yes, YOU, the organisations.

Many of our state run deaf advocacy bodies are unfunded. State disability advocacy bodies have huge waiting lists because they cannot support all the people that need advocacy. What are Deaf Australia or Deafness Forum doing to work together to build capacity of our State based advocacy. Just yesterday a Deaf person contacted me because they had been denied interpreting by a large public hospital, allegedly because the hospital said that it could not afford it. They asked me, presumably at the hospital waiting room, if I knew what part of the “Disability Act” compels public hospitals to provide interpreting – There is a readily available policy in South Australia, available on the internet, that outlines the responsibilities of hospitals in this regard. I emailed them the link to it. The bit that Deaf people need is on page four of this booklet if you ever need it –

https://www.sahealth.sa.gov.au/wps/wcm/connect/38291aa9-cdce-44ff-8d2c-79504413950a/Directive_Equity_of_Access_to_Health_Care_Incorporating_Interpreting_and_Translating_Requirements.+V1.1.15.05.2020.pdf?MOD=AJPERES&CACHEID=ROOTWORKSPACE-38291aa9-cdce-44ff-8d2c-79504413950a-ny0-WqV

Who is helping the States? Why am I doing this work when funded organisations should be doing it? Where are the partnerships and campaIgns to address all of these issues? What are our orgs all doing together to raise and tackle these crucial issues. ( Please don’t tell me you are on 31 committees and attended 5 billion meetings last year, Ive heard it all before!)

So these are some of the things that I think need to be tackled and addressed. Possibly they already are and we don’t know about them. I looked at one organisations website and I could not even work out what they were doing, what coherent strategy they have, what they were wanting to achieve or even what their staff do. If you are working on these issues COMMUNICATE it to us! Get the community behind you! And most importantly – join forces and work together – FFS!!

That is all!

Blowing My Own Trumpet

Image is of a man with his legs crossed. He is holding A trumpet. caption read – Blowing My Own Trumpet.

Over the next couple of months I went to tell some stories about some of the unsung heroes of the Deaf and hard of hearing sector. Not the Deaf community, but the sector at large. You know there are people out there that slog everyday. They open doors for people with a disability and deaf people simply by taking on the world and winning. It is often not a great world. It is often not designed for people who are Deaf or hard of hearing – But everyday people take this world on and win. They do far more for Deaf and hard of hearing people than many others that actually work in the Deaf and hard of hearing sector – Simply by living and showing the way.

I thought today I would start with me. And why not? Im coming to retirement in a few years and looking back over some of the things that I have done, well it is a way of celebrating. You can all stop reading now if you don’t want to read what is essentially me blowing my own trumpet. I’ll enjoy it even if you won’t. ;-D

Back in 85, I was among the first intake of deaf students at Mt Gravett College of Advanced Education which is now part of Griffith University. The late and great Dr Des Power recruited us. Dr Power was a great believer in giving deaf people an opportunity to become Teachers of the Deaf. He did so despite many in the establishment not thinking it was viable. Indeed, some Teachers of the Deaf protested. They said it was not possible because deaf students would not be able to teach speech. Dr Power ignored them all. There are many Teachers of the Deaf who are deaf who owe their careers to him.

Sadly, I am not one of them. You see, apart from being a rabid party animal with poor study habits, I broke my leg three times along the way. Although I completed two years of practical work and 18 months of academic work I kind of knew teaching was not what I wanted to do. Perhaps breaking my leg three times was the way of the teaching gods telling me that it was not meant to be. Suffice to say that one day the realisation hit me that I would go mad in school full of children everyday of the year except holidays.

So I quit. Sharon Hyde, our tutor at the time, did her best to convince me to stay, Gary” she said, with more than a hint of exasperation, “…you should be doing this with your eyes closed. Why do you make it so hard for yourself” I can see my mother reading this and nodding her head vigorously in agreement. But no, I knew that teaching was not for me and headed back to Adelaide to study social work.

It was here the making of Gary the advocate began. I enrolled in Social work at the then South Australian Institute of Technology, now known as the University of South Australia. I met with the Disability Liaison Officer, Dick was his name. I wanted interpreters like I had in Queensland but Dick said there was no money for this. He said he could organise me a buddy note-taker.

Dick, bless him (not), promised me he would arrange this for me before my first lecture. He didn’t. Nor did he arrange it by my second lecture, or the third, or fourth … I was getting desperate. I did what I had to do. One day after the lecture I went up to the lectern. I grabbed the microphone and implored all my fellow students to sit back down as they rushed for the door. Thankfully, most of them did. I asked for some volunteers to be my notetakers. It was perhaps the first time I had publicly disclosed I was deaf. A big thing for me. I was 22.

Anyway, I got some volunteers. I was forever chasing them for their notes. I had to grab their notes and take them to Dick who would photocopy them (When the photocopier was working.) It was a hard slog. I have to tell you I hated study, and still do. The scars remain.

Social workers are bleeding hearts you know. I’d often be sitting in group work with no clue as to what was going on. Some bleeding heart, wanting to show the lecturer that they understood the concept of opening the gate, would inevitably beam in on me and ask – “What do you feel about this Gary?” I would go bright red and have to admit I didn’t feel anything about it because I had no idea what they were talking about. True story.

So anyway, buddy note takers didn’t work. Recording lectures didn’t work because Dick failed to realise that his overworked secretary could not transcribe the recordings fast enough on top of her work load. SO, I began my career as an advocate and began to lobby for interpreters.

I was lucky because I began working at the Deaf Society and my work colleague, Vanessa, assisted me to to set up a Deaf Tertiary Education Support Network. We had several members that helped us to lobby for interpreters at University and TAFE. I met with my MP, the head of school, attended disability network meetings, got nominated to the Premiers Disability Advisory Committee, had meetings with the Eduction Minister Mike Rhann and so on and so on. I wrote letters to the Dean, the head of school. asking for interpreters. Finally after six years we won! I and my student colleagues did countless hours of unpaid work to make this happen. Countless deaf students have benefitted since. We should all be proud for what we achieved! Unsung heroes, all of us.

Very early in my career I made a calculated decision. I knew that If I worked only within the Deaf Sector my opportunities and influence would be limited. I decided that for my own opportunities and to have maximum influence I needed to work the mainstream.

I am proud to say today that I have worked with all disability types, including mental health and the NDIS. Most important, by working the mainstream I have made the mainstream more aware of what deaf people require to be included in society. I take my hat off to the many deaf people who have done the same. Simply by being out there and doing this they create far more opportunities for deaf people than people working in the Deaf sector alone. (My opinion anyway)

It is hard for me to know where to start but I would like to talk about the work I have done over 15 years or so in the National Disability Coordination Officers Program. It is a body off work of which I am immensely proud.

The inspiration for this body of work was my time as manager of the Successful Adults in Life Program (SAIL). This is a time before the internet had the powers that it does today. This is a time when a video conference required copper phone lines. It was very expensive. Put simply you needed a lot of phone lines for a good picture and to get good bandwidth. To make it simple, one phone line would get you an almost static picture where movement was just one big jerky thing. Two phone lines could get you a reasonable picture but it was still jerky. Three phone lines could get you a reasonably fluid picture, but at $600 an hour it wasn’t cheap.

The SAIL project focused on developing positive mental health in young deaf people. It also helped young people who were Blind or had a vision impairment. It is a program I designed and established. A big part of the program was the use of deaf mentors to impart “Deaf Life Skills” to young deaf people. I am pretty sure it was Australia’s first formal Deaf mentor program and had the first Deaf mentor training package. It was good too. Dr Catherine Wilshire quoted the model as best practice at the World Deaf Mental Health Conference in Denmark. She even quoted me, a very proud moment.

Back in 2000 we recognised that deaf kids in the country were extremely isolated. I worked with Melissa Phillips (Grivell) who was a visiting teacher for the deaf and deaf herself. We identified a number of deaf youth in the South Australian Riverlands. We wanted to connect them in someway to deaf youth in Adelaide. ( I am a bit of a sook, I get sniffly when I recall this.)

What I did, and this is true, I said to Adelaide TAFE that I would buy them a BIG TV for their video conferencing if they could promise me a year of free video conferencing to the Riverland and Port Pirie. To my shock they agreed, but a maximum two lines only. Not perfect, but with a little innovation – workable. From this two things happened.

Firstly, we connected four or five deaf youth in the Riverlands with deaf youth in Adelaide. We used innovation, lipreading, interpreting, text, whatever we needed, to communicate. The deaf Youth of Adelaide and the deaf youth of the Riverlands met monthly and planned an end of the year formal at the the famous 262 on South Terrace.

They planned everything from the format, the food, the music , the accommodation and the travel for the Riverland deaf youth. The Riverland deaf youth stayed the Appartments next door to 262. If I remember, the Apartments donated the room for the night. It was an enormous achievement. I laugh at people who complain now that their internet is too slow.

The second project was a wonderful deaf girl and her family in the Port Pirie. She was very socially isolated. Her mother wanted her to have access to Auslan and the Deaf community. We set up a program for the girl and her mother. They attended Port Pirie TAFE and learnt Auslan through Videoconferencing. My wife, Marnie, taught it.

We also set up a Deaf Mentor program where she met three deaf female role models regularly just to talk about life in general and practice her Auslan. It was heady stuff and required a lot of patience because the picture was slower which meant the people involved had to sign slower. The young girl is now a wonderful and valuable member of the Deaf community. Those in the know will often see her beautiful signing on Facebook where she works tirelessly to make videos focusing on creating awareness about mental health.

It was 2001. It was heady stuff and awakened in me an awareness of the power of online delivery to provide support to people living in remote areas. It is all a bit ho hum now. Now we have Telehealth, video relay interpreting and a soon to be CONVO service that deaf people can access at anytime on their phones, iPad or computers. Back then, in 2001, people told me I was dreaming. They said the speed was too slow. Tellingly, they told me it was not possible to use nor teach Auslan in 2D. Boy, were they wrong.

I commenced the NDCO role at the University of Ballarat in 2003. I had spent a year in Alice Springs as a teacher aid for three deaf Aboriginal students while my wife progressed her career as a visiting teacher. I knew first hand how difficult it was to access supports in a remote area. Indeed, I was interviewed for the job by teleconference because every video conferencing facility in Alices Springs, including the hospital, was broken. I booked the one Auslan interpreter in Alice Springs who arrived late and had to leave early. Somehow I got the job.

So, I commenced the NDCO role in July 2003. I had a wonderful boss, Barbara Webb, who made sure I wanted for nothing. I was acutely aware that me wanting for nothing was extremely expensive. For example, a one hour meeting in Warnambool, an area I covered, cost almost $1000 in interpreting fees. This included the minimum two hour fee plus the time the interpreter was on the road which was charged at full cost.

I wanted to prove a few things in this role. This included:

  1. That Interpreting cold be delivered through the internet using a dongle (3G at that time.)
  2. That education could be delivered online through an interpreter and captioning.
  3. That Information could be delivered online and in accessible formats.

My goal was to demonstrate how much cheaper that It could be if you could cut out travel costs. I also felt that less travel would help to free up supply for a service that was already outstripped by demand.

In 2006 I worked with the great Alastair McEwin who was heading the Redfern Disability Legal Services. Alastair put a couple of his lawyers at my disposal to prepare a plain English version of the DDA Education Standards. I worked with Todd Wright and Marcel Lenehan, who was then at the Macquarie University, to prepare an Auslan version of the Standards. I worked with the University of Ballarat to prepare an audio version of the Standards as well. From all of this information we created one of the first examples of an accessible website – https://ddaedustandards.info/

This was updated in 2014 and signed by the wonderful Stephen Nicholson. Originally Todd Wright was the signer. I still think it is one of the best examples around of an accessible website. The original version of the website allowed the user to download the Vodcasts and Podcasts of the information.

in 2008 we produced an example of an accessible online learning platform. We produced an example of a hospitality course where information for the course was available in text, audio or Auslan. We produced a CD (remember those) that you could load up and a graphic of a mobile phone would come up. You pressed the various icons on the mobile phone to see how Auslan, audio or text could be provided for online learning. I still have not seen anything as good since even if I am biased.

And finally from 2009 to 2011 I worked with Auslan Services to trial providing interpreting through the Internet and using a 3G dongle. We trialled it with a deaf student it Ballarat where we used the dongle and a laptop so that she could access interpreting in class. It was far from perfect but we showed that it could be done.

We also trialled online interpreting on the big screen through the internet at TAFE in the Goulburn Valley. I produce an instructional booklet on how to do this by Skype including setting up optional audio for the interpreter. At the time you would be amazed at how many nae sayers there were.

We were pioneers in every sense of the word showing Australia what could be done. Two of my favourite things were a funny training video I did using green screen. I used a green blanket for the green screen and superimposed myself interpreting myself on a video of me cooking cheese on toast. My sons filmed me and everyone tells me they could hear them giggling in the background as my dog, Hermione, stole my cheese on toast that I deliberately dropped on the floor.

The second was a training video I produced with Len Bytheway. This provided a desktop example of a video that had captions, interpreting and audio description. In a world first, the audio description was captioned so that deaf watchers could understand how audio description worked.

These were heady days. I like to think that I had more than a little influence on how things are today, particularly as my work was promoted widely hrough universities and TAFE through the NDCO network and ADCET website. Take a look at the new ADCET website here – It is an awesome thing. (Nothing to do with me mind you, although you will find some of my work there including one of the first examples of an accessible Webinar. ) ADCET

So there you have it, 101 things you didn’t know about me. Im not just The Rebuttal man you know. Not just the man who is known for rocking a boat or two. These days, apart from continuing my work as an NDCO, I do a lot of voluntary work helping parents and deaf people challenge NDIS decisions.

I also help one or two people with workcover applications and negotiating better access in their workplace. This year I have estimated that I have done around $12 000 in voluntary work for these people. Money is not important, it gives me a great deal of pleasure to stick it up the establishment with them.

The Gary you never knew. Who woulda thunk? Stay tuned for the next unsung hero. Only here at The Rebuttal!