The Rebuttal

Who remembers WALL-E. That lovable robot in the 2008 movie of the same name. WALL-E had been designed as a sort of waste disposal unit. He developed feelings and emotions and fell in love with EVE, the Extraterrestrial Vegetation Evaluator. They had an electric kiss and more or less saved the world. Artificial intelligence (AI) at its best, just what the world needs. Or does it?

Over in America Waymo offers fully autonomous and driver-less taxis. Now, Driver-less cars offer heaps of potential to the disability community. If you are blind or have a physical disability, especially in Australia, you will know the frustrations of trying to get a cab, particularly an accessible Cab. Driver-less cars offer the potential of enormous independence for many people with a disability. But on the other hand, if driver-less taxis become the norm in Australia. How many people are going to lose their jobs? https://waymo.com/

No taxis drivers. In the gig economy, what’s going to happen to Uber drivers. Potentially, the ever-popular food delivery could be done by driver-less units. You get a text, ”Your meal has arrived, please come and collect your delivery.” Thousands of university students are gonna miss out on income. Worse, imagine those people who can’t come out and get their delivery because of physical issues. If experience tells me anything, no one will think about disability until one day someone pipes up with a question – WHAT ABOUT ME??? By then undoing what has already developed will cost millions, if not billions of dollars.

I love artificial intelligence. It gives me access every day. Years ago, we used to laugh at the possibility of automatic captioning. It could never be done we said. Too many words sound the same, it will never know which one to use. Or accents, come on now, no software is gonna be able to decipher the millions of accents. Is it? How is it gonna recognise all the languages of the world? Who remembers the hilarious early YouTube automatic captioning? So many of us, including me, dismissed the possibility of there ever being a usable form of automatic captioning, EVER.

And here we are today. I no longer book Auslan interpreters or captioners because the technology is so reliable. Sure, it makes some errors but it’s easy to work out the phonetics most times. At worse, I just have to ask people to occasionally repeat what they have said. I use it for the doctor. Hell, when I had my hip replaced, I carried my iPad all the way to the operating theatre and communicated with everyone until they knocked me out.

I meet clients, have meetings with colleagues, make phone calls and even listen to podcasts. It’s been a boon for me. Yes, I know I have the privilege of understandable speech and it is not for everyone. But the independence it has given me has been enormous. I’m only sad that I had to wait until I was 57 years old to get access to it.

Now people are trying to program sign language into AI as well. We all poo poo this too. Can’t be done we say. What about the right facial expressions, space, nuance etc. I’m skeptical too but given what they have done with captioning, it wouldn’t surprise me if they develop something more than usable with sign language in the not-too-distant future.

Imagine going to the bank with a virtual interpreter on your iPad at the ready to discuss a home loan. And when you sign it has a sensor and voices back what you say. Farfetched? Maybe, but the way artificial intelligence is developing today, I wouldn’t totally dismiss it.

I probably sound more enthusiastic than I actually am. Yes, I love my automatic captioning, but it has come at a cost. Captioners and people in the captioning industry are actually losing their jobs. People who are friends of mine have had to change careers. Companies who I once relied on are struggling. The technology is great, but it sometimes comes at a great human cost.

Imagine the scenario with sign language? Interpreters out of work. No longer will there be a need to get the community to learn sign language for inclusion, the trusty iPad will do it all. TAFE courses close. The less people that use sign language, the more difficult it will be to keep sign language alive. As native signers die out, who will be looking after the language when it becomes fully automated. It is scary and more than a little bit dangerous.

Even now artificial intelligence is leading to exclusion. I’ve written before of how companies now use it for recruitment. Interviews are done virtually, and often at short notice. You have to hear, you have to speak, you have to see. Often if you are neurodiverse the format of virtual recruitment is inaccessible too. And many developers don’t care! It is all about rapid roll-out and earning mega bucks!

But there are some companies that do care. Microsoft and Apple are pretty good at thinking of accessibility. I mean Teams, as an example, has really good automatic captioning. Teams also has the ability to permanently spotlight all people that sign so they are easily seen and understood. Apple, apparently, also have programs to provide support in Auslan and other countries sign languages. Thinking ahead, including all people and thinking about groups that will be excluded when developing anything new is always the way to go. Sadly, it doesn’t happen enough and consequently people with a disability are always playing catch up.

The Government is worried too. For all its benefits artificial intelligence has the potential to be abused and exploited. There are concerns about privacy and misinformation. Already copyright is being breached as developers “steal” the work of others to develop the data for their programs.

Recently Victorian MP, Georgie Purcell, had an image of her digitally altered by AI. The picture was altered so that a dress that she was wearing exposed her midriff and enlarged her breasts. She quite rightly complained, and Channel 9 were forced to apologise. Even now you have online access to AI where you can ask it to generate an image for you. It is scary and it is for these reasons Governments the world over are scrambling to regulate the use of AI.

Nevertheless, used properly and ethically AI has the potential to open up the world and make it more inclusive for people with a disability. The problem is that too few developers outside the huge multinationals are thinking about people with a disability as they develop AI and are actually excluding people with a disability in a big way.

Here is hoping that the push to regulate AI development considers at length the needs of people with a disability. Used properly, AI could make the world a better place for people with a disability. We just have to make sure we get in early and make sure our voices are heard.

… It’s Christmas time, there’s no need to be afraid
At Christmas time, we let in light and we banish shade

… And in our world of plenty we can spread a smile of joy
Throw your arms around the world at Christmas time

… But say a prayer, Pray for the other ones
At Christmas time it’s hard, but when you’re having fun

… There’s a world outside your window
And it’s a world of dread and fear

Do they know it’s Xmas – Band Aid

It has been a strange year for me. I was working in my forever job at Expression Australia. I loved it there. I loved coming to work and being around people who were equally passionate about Deaf and Hard of Hearing issues. I loved my work mates and the ease of communication with them. I loved mentoring my team and imparting 35 years of wisdom, after all, you cant take it with you. I loved less, the Disability Employment Service. I have no kind words to say about it, but that’s another story that I have already told in these pages.

It was a joy to be able to help clients as well. Many were long term unemployed who had given up on work. Many were very lonely and their visits to me and the team helped to alleviate their loneliness. Some, far too few sadly, we were able to help into employment. Our world, with all its technology, is developing at such a rapid pace, it has forgotten to bring people with a disability along with it.

So many times we have had to tell companies and organisations that the wonderful technologies that they are developing, many through artificial intelligence (AI) are audio based and work in such a way as to exclude people who are Deaf and hard of hearing. They are also technologies that work rapidly and require quick responses and I suspect that people with cognitive issues and those who are neurodiverse find it difficult to access them. I know the blind man who had to respond to written questions on his screen couldn’t interact with the technology. He had to get his young son to try and help him. It is a travesty. But alas, that’s increasingly the route companies are using for recruitment and provision of services.

Despite these challenges, I loved my job. I loved it because I had the knowledge to be able to provide solutions. I was motivated and hungry to come to work every day. Unfortunately, I lost my job. Expression are going through some tough times. People were made redundant as Expression seek a way forward to be financially viable. I fully support the actions that they have taken and I hope they find a way that allows this grand old organisation to survive.

I possibly could have still been at Expression but I chose redundancy so that I could support my son and his partner with their sick son as much as possible. He is my grandson, not by blood, but we have adopted him. He is a cool kid. He has his challenges at the moment and I just wanted to be around if needed.

So I accepted another job that would be a more nine to five job to give me the flexibility to offer support. This was as a support coordinator. I work with people with disabilities who have very high needs and very large NDIS plans. Many of these plans are over half a million dollars and the needs of the participants are very high. It is really a privilege to be able to support them.

I have been struck by how sad some of their lives are. Many have no family supports. Many are in supported accommodation. Their only interaction is through the activities of these places and day services. The people they see as their friends are often support workers and the professionals who provide them with numerous therapies like behaviour support, speech, physiotherapy and so on.

This kind of conflicts me. I am a seasoned disability worker, I am supposed to be upbeat and positive. But if I am honest, I find it desperately sad that many of these people have no family and the majority of their interactions with people are those that are paid to help them. I asked what some of these people will be doing at Xmas. Some will be at their supported accommodation over Xmas with paid support workers and a few other residents because they have nowhere else to go. I really hope that they know its Xmas and get all the joy that they deserve!

… It’s Christmas time, there’s no need to be afraid
At Christmas time, we let in light and we banish shade

And that’s all I wish for this Xmas . That there be a bit of light. A bit of light for Expression so that they can survive another hundred years. A bit of light for my adopted grandson so that he can have fun at Xmas with his family. A bit of light for those people with no family who are relying on paid workers to ensure that they get to experience the spirit of Xmas. AND a little bit of light for those people developing programs and services so that they slowdown and think about people with a disability in a way that they are included for real from the start, and not just as an afterthought.

Everyone deserves a little bit of light – Let them know its Xmas time!

Merry Xmas all!

Australia, and indeed the world, is not designed for deaf people and it isn’t designed for people with a disability either. Sometimes I think that hearing people want the world to remain the same. For whatever reason some hearing people want to maintain their control over deaf people. They have little tricks to maintain that control. Sometimes hearing people’s controlling behavior is deliberate. Sometimes it is not, it just happens from habit and they do not realise that they are controlling. Whatever, there are some hearing people that just want to maintain control and keep deaf people in their place. To do this there are tricks that hearing people play.

This controlling behaviour starts early, in childhood. Let me explain. As a boy I lost my hearing around the ages of 8 or 9. When I lost my hearing the behaviour of my friends changed. For example, they would come up to me and force me to lipread them. They would say things like, “Gary, are you a poof?” Or “Gary, do you love Peter?”. They would say things behind my back and I would look around and all the kids around me would be laughing, I had no idea why. This is why I think the attitude that hearing is superior to deaf starts in childhood. Sure, parents might teach them different behaviours and the attitude of some of these kids might change over time. Either way, during childhood there can be a strong belief that hearing is superior to being deaf that probably carries over to adulthood.

Many deaf people around the world would be familiar with Dinner Table Syndrome. This is where there are family gatherings, perhaps for birthdays or Christmas, and everyone around the dinner table is hearing except for the one deaf person. This is true for probably 95% of deaf people who are born into hearing families. We all have experience of everyone chatting away and not knowing what the hearing people are talking about. Or when everyone laughs and you are the only one that is not laughing. This is why I often steal away in hearing gatherings and read a book or watch a movie by myself.

Sometimes we try to find out why people are laughing only to receive responses like this – “I’ll tell you later.” “It’s not important.” “Don’t worry, it was not really funny.” It is infuriating because what right do these hearing people have to decide what is important, funny, not funny etc and just decide what is important to tell us deaf people. Consciously or unconsciously, it is just another way that hearing people control deaf people and assert their superiority. It is a trick that hearing people play.

But last year it was different. At Christmas I brought along my iPad and set up the automatic captioning. I could get the gist of what people were talking about. There was a conversation going on about wine. Another about children, someone was talking about childcare and another was explaining their health challenges. For the first time for a long time, I felt included.

So I was sitting their with my iPad, my wife was next to me. Someone started talking about a family issue. And then the caption came up. “Don’t tell Marnie, it will upset her.” My wife was furious, and rightly so. Here we were and hearing people were just talking about us as if we were not there. It probably happened all the time. We would never have known. These hearing people seemed to think that they had a right to just talk about us as if we were not there. What an absolute abuse of power. What absolute disrespect. Just another trick that hearing people play to keep deaf people in their place.

I am a Deaf Professional. I have worked with hearing people for many years. I have meetings where I use interpreters or I use captioning. These meetings must have some control. If everyone speaks at once, the interpreter and captioner can not provide me with accurate information. I have many years of experience that I like to contribute to these meetings. Often I cannot because everyone is speaking at once and so fast that I can’t get a word in. I am forever asking people in meetings to slow down or speak one at a time. They will do so for a time and then often just revert to type. It’s frustrating and belittling that many of these people just will not take responsibility. It is just another way that they assert their power. Another trick that hearing people play.

Many years ago I was on the Board for an old and reputable deaf organisation. We were in the middle of a Board meeting. Often I had to tell the Board to not all talk at once. I had to remind them that when they did so that the interpreters struggled and it made it hard for me to participate. It made no difference. Meeting after meeting they did the same thing. Until finally I snapped. I thumped the table and reminded the Board members that this was a deaf organisation that had been around for almost 150 years. I reminded them that they all knew the barriers and needs of deaf people and that their conduct was disrespectful and unacceptable. I told them that they should be ashamed of themselves.

To this one male member piped up. He said, ” Gary, if you’re not understanding us, just ask for clarification.” I lost it. How dare he talk to me like a child. I told him not to patronise me. I told him to take responsibility and not expect everything to fall on to me. I told him his comment was disgraceful. Boy, was I angry. But again, this is just an example of what hearing people do to belittle deaf people and absolve themselves of any responsibility. Tricks that hearing people play!

There are many deaf people like me that have spent decades advocating for change. We have to constantly challenge and request improvements and change. When we do this we are sometimes listened to and respected, Sometimes the changes we request are made. We have wins. Often we are dismissed and ignored. Just another way for hearing people to maintain their control.

Recently I heard a story from a deaf advocate. They had approached a reputable advocacy organisation. Led by a hearing person, who else. They were trying to address issues with the National Relay Service, (NRS). They pointed out that the NRS registration was unfair and discriminatory. They pointed out that sometimes the waiting time to be connected was not acceptable. They pointed out that sometimes calls dropped out. There needed to be improvements. The response from the hearing advocate – “There is nothing wrong with the NRS!” The advocate just completely dismissed the concerns of deaf people. That there is control. That there is disrespect. Just another trick that hearing people play.

But it gets worse. The same person raised issues for deaf people in rural and remote areas. Like in Central Australia where services are few and far between. The deaf person wanted action to bring awareness of the lack of services and supports, What was the response of this arrogant and incompetent hearing advocate? “These people will come to realise that if they want the services that they need, they will have to move to the city.” Case dismissed. Power maintained. Just another trick that hearing people play.

Really, deaf people and people with disabilities all over Australia want change and they want equal access. They have some good allies. People with the right attitude who want deaf people and people with disabilities to get positive change and better access. But, there are other hearing and non-disabled that don’t want this change to happen. Why? I am not sure. Maybe it is because they do not want to change their behaviour. Maybe it is because their behaviour is just a habit. Maybe it is because they truly want to maintain control. Or maybe, probably the main reason, they just don’t want to spend extra money to make changes.

So, these people have tricks that they use for control. These tricks keep deaf people in their place. In this article I have described some of the ticks that they use for control. The tricks that hearing people play to control YOU – the deaf person. Don’t let them!!

The very first Rebuttal released bemoaned the lack of Deaf CEOs at our Deaf Societies. We argued that Deaf people had lived experience and the skills to be able to lead our Deaf Societies from top to bottom. It was argued that expecting Deaf people to compete on merit for upper management positions, such as the CEO, was not realistic because in doing so they had to compete with hearing people who had many years of experience and less barriers to opportunities. We argued that because of this we needed to proactively seek and appoint Deaf people to upper management roles, like the CEO.

This was then, and largely still is, the situation for Deaf people and indeed all people with a disability. Namely, that our society is designed in such a way that it limits the career opportunities for people who are Deaf and people who have disabilities.

Times have changed a little now. Back then we had a Deaf Society in every state. Now we have only two and they are not called the Deaf Society any more. They have flash business names and compete against each other for territory and the almighty NDIS dollar. More tellingly, these two organisations are led by two Deaf CEOs and many of their upper management are also Deaf. It is brilliant. We have come a long way.

I think in today’s world we have come to expect that in the Deaf and disability sector we should follow the mantra of, “Nothing about us, without us.” Put simply, programs for Deaf people or people with a disability should never operate without input and design from the people that they are targeted at  – US!

So, it was with interest recently the peak body for one of Australia’s biggest disability programs had a leadership forum. They invited leaders of the program from all over Australia to come together and plan for the future of the program. On social media they proudly published photos of the big gig. What I noticed was that none of the people in the photos were obviously disabled.

Now, I am not so naive as to expect that a photo tells the full story. Some of those people in the photos may have a disability. They could have Autism. Perhaps they have severe mental health issues or even medical conditions. Or they may have been vision impaired or Blind. The photos would not necessarily tell us this story.

I am very aware of this. However, I felt that if we were going to discuss and plan for the future of one of Australia’s biggest disability programs we would want a wide range of people with a disability attending. What is more, I would expect that we would proudly advertise this fact. On the social media post none of this was obvious nor stated.

I left a comment that simple said, “One would hope that a significant number of those leaders attending have a disability.”  I was fully aware that the comment might cause a bit of a stir. Nevertheless, I made the comment for two reasons. Firstly, I wanted confirmation that one of Australia’s biggest disability programs was properly including people with a disability in its planning for the future. Secondly, I wanted to know if there were actually people with a disability at this big planning thing.

Sadly, I didn’t get that sort of response. Instead my comment was removed and the CEO contacted me through a personal message in an attempt to explain why. Apparently, my views on the program are well known and not positive. Apparently, my comment inferred that there were no people with a disability at the forum and this might be deemed as offensive by some who attended and did have a disability. The CEO did offer a private chat but I have not been able to take them up on the offer as yet due to work commitments.

I replied to the CEO. I basically said that all they had to do was answer yes or no. They could just state that there were a number of people there with a disability or simply acknowledge that moving forward that they would endeavour to ensure better representation of people with a disability. I told them, bluntly, that removing the comment was just being deceptive and avoiding having to confront this very important issue. They, naturally, didn’t agree.

As John Cage of Ally McBeal fame would say, “I am troubled!” Or more likely, “Unacceptable.” It is 2023 and co-design is the new buzzword. When we design, amend, improve or commence any program for a specific group, the group should inform and lead such a program. Be it women, LGBTQIA+, ethnic, First Nations or disability – the people the programs are funded and designed for must be at the forefront of the design, implementation and leadership of the program – “Nothing about us, without us” 

In the real worked I see most of these groups that I mentioned leading the programs that are funded and designed for them. Disability does too, but not to the same level. Still disability seems to have its share of savers, well meaning non-disabled who think that they know what is best for people with a disability. Well meaning non-disabled people who claim to want to empower. But by the very use of that word EMPOWER, they imply that they have all the power and it is theirs to give!

But you see, people who are Deaf or have disabilities already have power. The problem is that they are denied opportunities to exercise it. There lies the subtle difference, we don’t need empowering what we need is the opportunity to exercise the power that we already have. Making sure that we are at the forefront of programs funded and designed for us will allow this to happen.

Simply by making us the key people at leadership and planning forums for programs funded for us is where this starts. Don’t hide us away and deny us this opportunity. Yup,  Count us in! 

With respect.

This article has been submitted by a Parent of a Deaf Child. I am sure it will resonate with many parents who have Deaf children or children with disabilities. It reminds us an again, that Medical Models have limits, can traumatise and often have one fundamental thing missing – Lived Experience. I thank the parent for submitting this powerful piece.

As we cradle that tiny infant in our embrace, an unspoken commitment forms within us — a promise to love, nurture, and safeguard. Yet, the depth of these words unveils itself only when we realise that the journey ahead for this small bundle, nestled in our arms, will be one neither of us could have anticipated.

The truth unfolds in a surreal manner. You’re told that the apparently perfect little bundle in your embrace is fated for a journey marked by appointments, diagnoses, tests, and therapy. As a newfound parent, you’re entrusted with directing and advocating within this uncharted territory, ensuring your child not only weathers the challenges of their world but also flourishes in the face of them.

The precious opportunities for genuine connection and bonding with our child are overshadowed by the belief that something is amiss, compelling us to embark on a frantic quest for restoration. Instead of joyfully sharing our baby’s introduction to the world with friends, we find ourselves thrust into an unfamiliar realm of medical protocols, reshaping our child’s journey along a path we never envisioned.

It’s not so much the initial shock of diagnosis that weighs heavily, but rather the weight of words laden with failure and despair that are cast upon us. These words trickle over us and seep into every pore. We find ourselves in a moment of profound change, where the trajectory of our lives has taken an unexpected turn. Our precious child, just beginning to explore the world, has encountered what seems like a stumble in their journey. A perceived failure in their very first test of life.

As new parents navigating the uncharted waters of parenthood, we are confronted with the idea that our connection with our baby might require additional support. Instead of being equipped with the immediate language skills to connect, we are ushered into a system that seeks to identify the most fitting technological interventions. This situation can undoubtedly feel overwhelming as we grapple with the complexity of options and decisions that lie ahead.

We find ourselves constantly tested, scrutinizing our child in the hopes of glimpsing what is deemed acceptable. In this medical realm, we inadvertently lose touch with our own selves and the once-familiar pillars of support and community. The pursuit of “fixing” our child and immersing ourselves in this new realm promises all the solutions. However, this mindset perpetuates isolation and fosters a perception that your immediate community lacks the tools to assist both you and your child.

New parents experience the loss of their own identity and support network and also the absence of a community that could illuminate the path ahead. Instead, families are compelled to view the professionals entering their lives as their new support system. They grant these professionals the authority to become decision-makers and entrust them with the role of guiding the way. This transition can often be unwieldy and inadvertently steer families deeper into the framework of a therapeutic model.

The inherent flaw in this system lies in the current model’s failure to recognise the immense worth of linking new parents with individuals who possess firsthand experience. Whether these are families who have trod a similar path or individuals with lived experience, the assumption prevails that such connections might overwhelm and prove distressing for new parents. 

Individuals who possess firsthand experience should be at the forefront, working alongside families to navigate the intricate web of information and affording parents the room to process and bond with their child. The anxiety stemming from manoeuvring through an unfamiliar world can be overwhelming. Having a guiding presence of a person that has lived it, in that moment would offer the chance to finally take a deep breath.

Parents require an environment that nurtures, empowers, and supports them. They should be allowed to naturally connect with their child, fostering a genuine understanding. It’s crucial for them to feel that their opinions are valued and that the individuals around them are both knowledgeable and encouraging. 

Who could be more fitting to offer this support than those who inherently comprehend the intricacies of that very path?

Unfortunately, many families are deprived of the opportunity to engage in with this wealth of lived experience. Instead, they are thrust into a demanding realm where they must become skilled advocates and fight to have their voices heard. Despite enduring countless challenges, their voices often struggle to break free from the confines of rigid dogma and a narrow interpretation of research. Parents are expected to conform.

Families often find themselves isolated on this journey, convinced that their struggles are uniquely their own. They bear the weight of feeling that their concerns are unjustified, and the expectations imposed upon them are merely the bare minimum they owe to their child. Any deviations from the prescribed path are perceived as neglectful, casting doubt on their child’s chances of success. This relentless pursuit demands that you be constantly at your child’s side, turning every moment into an opportunity to develop speech and hearing. Yet, this approach has a downside – it steers you away from the chance to naturally cultivate language skills and remain connected within your community.

Parents who do not conform to this medical norm might be labelled as troublemakers or dismissed as mentally unbalanced. Sometimes even leading to suggestions that they seek mental health assistance to address their anxieties. Consequently, rather than fostering understanding and attentive listening, these reactions can raise barriers that do not serve the best interests of the child or the cohesion of the family unit. In an environment where constant judgment prevails, how can trust be fostered? How can a warm and loving home be cultivated when one is ensnared in a web of fear, guilt, and grief?

Reflecting on our journey thus far, I can now confidently affirm that the precious baby placed in my arms was utterly perfect and never failed any test in life. The challenges that made our journey arduous stemmed from the reality that our child was born into an imperfect world and subjected to a flawed medical model of disability that shaped our path. This was not a failure on our baby’s part, but rather a shortcoming of a new mother navigating a system ill-equipped to provide the necessary support.

The sources of stress in our journey didn’t arise from my child’s hearing loss. Rather it arose from the constant need for advocacy. From the constant navigating uncharted terrain. Tellingly it arises from a system that exclusively measures success by a child’s hearing and speaking abilities. This often overlooks the child’s happiness, self-worth, and identity. And let’s not forget their comfort in this equation; it was often left out. This system itself is deeply flawed.

The strides my child has made in speech and hearing, thanks to the benefits of a cochlear implant, stand as a testament to the incredible impact of advanced technology, something for which we are deeply thankful. However, even with access to cutting-edge solutions, my child’s deafness remains a significant part of their reality. Each day, they confront challenges while navigating a predominantly hearing world. A world that often overlooks the child’s specific needs.

Despite undergoing therapy and having access to sound, my child doesn’t simply fit into the category of “hearing.” Fundamentally, my child identifies as Deaf. Their authentic essence is intricately woven into the Deaf community, where they discover the sense of belonging they’ve longed for. It’s a space where they aren’t defined by their disability but can wholly embrace their true selves without reservations.

When I envision a brighter and more inclusive future for our deaf children, I picture a scene where a baby is placed in a mother’s arms. She’s informed that her child is deaf. The doctor gazes at her and says, 

“Congratulations on your beautiful baby. Your baby is deaf, but there’s no need to worry. Your child is destined for a remarkable life, brimming with limitless possibilities. They’ll journey through life with your unwavering support and the love of your family, embraced by a vibrant community of people who have travelled a similar path, ready to stand by you every step of the way.”

The mother, as she looks into the doctor’s eyes, understands this, for she can see that he too has walked this very road

Life is funny and sometimes a little cruel. I was back working in the Deaf sector for the first time in over 2 decades. I had worked in the hearing disability sector for all that time. Successfully, I might add. In those two decades I like to think that I opened a few doors for Deaf and HoH and changed a few perceptions of what employees who are Deaf or HoH could do and achieve. At least I hope I did, otherwise it was a wasted two decades.

The best thing about working in the Deaf sector is coming into work each day and just communicating easily. Each morning I would get my coffee in the kitchen. There would be someone there. We would chat. Talk about the weekend or the day ahead. We would exchange jokes or tease each other. If we were feeling a bit bleugh, we would pick each other up. It was just a natural interaction that made one want to go to work every day. In the hearing sector, this kind of ease of communication can be much more fraught, much more difficult and much more forced if you are Deaf or HoH

And of course, there were the Deaf or HoH clients too. Communication was easy. Sure, some had language delays and gaps, but I had the skills and knowledge to assist. I had learnt a lot in two decades working with ‘HEARIES’  I had also developed and implemented many solutions to communication issues. A lot of this centered around technology. Some of it was just personal strategies that I used to ensure I was included to the maximum. I felt useful because I could pass this knowledge on to the clients. I hope that they found this information useful as well.

I loved it when I helped Michael triple his NDIS plan on review. Michael was latter deafened and he became involved in the Deaf community through sports. He wanted to improve his Auslan and get employment support. He got all of that and more in his new plan. Then he came to work with us, and it was a joy to see him grow. For him it was the first time he had been in an environment that actually understood his needs. Deafies supporting deafies, it is a great feeling.

I loved working with him and Vanesssa. We did great things. We got a group of Deaf migrants and refugees doing an Auslan/English course. We got a group of Deaf people, many long term unemployed and with language issues, to complete their first aids certificate. We got a Men’s Shed to look at accessibility for deaf men participants. All of us using our knowledge and skills to create opportunities for Deafies. It is why I wanted to go to work everyday.

Working again in the Deaf sector provided me with an immense sense of inclusion. The fitting in and communicating with everyone. That sense of belonging. The ability to share knowledge and life experience that will benefit others. All of these are wonderful things. It motivates you to want to come to work. You wake up in the morning and you really look forward to what the day has in store. Sure, some days you wake up knowing you have this long meeting with clueless Government bureaucrats and want to find a cave to hide in. But mostly it’s just fun and you want to be there.

I can’t say I always felt that way in a hearing environment. Don’t get me wrong, I got lucky in my time in hearing environments. I always had empathetic employers. Employers who were willing to adjust and colleagues who were flexible. BUT, it was exhausting. Communication was a struggle. Lipreading all day is tiring. The need to be supremely organised to make sure that you got interpreters for meetings was a drag. And mostly, it was always on me to organise and arrange. I had some great colleagues who often took responsibility but mostly the burden was on me.

And then there were the cancellations. Or the organisations that promised to organise but failed to deliver communication support. I recall once being asked to attend a Disability Employment Conference held by a peak body. I was sitting on a Govt advisory group at the time and they asked me to attend. I asked the peak body to book interpreters which they promised they would. Six weeks later the peak body called me, a week out from the conference to tell me that they could not secure any interpreters.

I was livid. I had given them six weeks’ notice. The first thing I did was contact Nic at Auslan Services and ask if they had any interpreters available for the conference. I gave Nic the times needed. They got back to me within the hour. They did indeed have availability. I was lucky because University and TAFE was out so demand for interpreters was a bit lower. So, I told Nic to book them.

I got back to the conference organisers and told them that I had secured interpreters, asked for the details of where to send the invoice etc. And you know what? They refused to accept the booking. They said – “You can’t expect us to cover such a cost, its excessive.”  A peak body for disability employment, I kid you not.

Now, the Govt advisory group I was part of offered to pay. I was having none of it. Come hell or high water, the disability peak body were gonna pay. They advocated for disability, for god sake! My boss came in and said work would cover the cost. I said, no way. I was going to make the peak body pay, it was a matter of principle!

This is where it gets fun. Cos the conference keynote speakers were all part of my network. So I emailed the peak body and I CC’d in all the keynote speakers in. I let the peak body know how appalled I was at their attitude. My boss was horrified at my strategy and said that nothing good would come of it. She said it wouldn’t work. I told her it would. I said, “Come into my office at 9 am tomorrow and I bet you there will be an email from them accepting the cost.”

So 9 am the next day the boss is at my shoulder as I open my emails. There was no email at 9 am and my boss was imploring me to let work pay. At 9.01 am an email came through from the peak body accepting the cost. They apologised profusely. My boss let out a wry chuckle. She left my office and gave me a look of utmost respect. Later, I found out that keynote speakers had threatened to pull out if the peak body did not accept the responsibility to pay for interpreters. You don’t get this sort of crap when you work in the Deaf/HoH sector.

Those were heady days. But when you do this for two decades, it leaves its mark. It drains you. For this reason, to be back in the Deaf/HoH sector was a godsend. I loved it! Alas, the organisation I worked for hit troubled times. My job was made redundant. And now I find myself back working in the hearing sector.

I am thankful that I have a job. Working in the hearing sector now is a lot easier because of all the advances in technology. I leave my automatic captioning on all day so that I can get the banter of the office. My captioned phone means I don’t need the awful National Relay Service anymore. Work colleagues are great and only too willing to adapt.

But it’s not the same.  I miss the chats in the kitchen. I miss going into the lunchroom and joining in any number of conversations. I miss the colleagues who stop me in the office hallways and naturally share a joke or an anecdote. I miss the spontaneity of it all.  No disrespect to my new colleagues, but it is just not the same!

C’est la vie!

Did you know that people with disabilities are mythical creatures? They are awesome. In fact they are so good employers should employ them, cuz they are the absolute best. Yup, research shows employing people with a disability is the bees knees, and I am quoting here from an article Five Good Reasons to Hire Someone with a Disability: (My comments are in italics.)

1)      They can be counted on! – Yes siree … One study found that people with disabilities are actually nearly 40% less likely to take sick leave or time off compared to other workers! Not only that, employees with disabilities often stay with a company longer.  

Yup, stoic– That’s us! Loyal! (Mind you we often stay in the same baseline jobs for many years while our able bodied colleagues get promoted.) 

2)      They see things differently – Many employers also find that workers with disabilities are among their most productive, and bring something extra to the table too – whether it’s a different perspective, a lateral approach to problem solving, or a different set of life experiences.

Apparently, we are super adaptable cuz, well when you live in a society that designs itself for everyone except people with a disability, that’s what happens!

3)      They can give you an insight into your customers – After all, how can you hope to understand and respond to the needs of diverse Australians, if you don’t have any of these people working for you? It would be like having a workforce with no women, or no ethnic diversity – limited, and really just plain wrong.

We are worldly you see. We know everything about every experience of every person with a disability, so don’t forget us!

4)      They make your company more likeable – According to a recent study, a massive 87% of people say they’d prefer to give their business to companies that hire people with a disability.

Cuz we are super cute and friendly and everything. And, GOLLY, how good must an employer be for employing us, they gotta be lovely!

5)      Their good work ethic tends to rub off –  It’s been shown that having people with a disability in the workplace improves staff morale, team work, and the quality and speed of work that other staff produce.

I feel all warm n’ fuzzy now. I’m just absolutely super, My mere presence makes a workplace HAPPY! Makes them more cooperative and they even work faster. I got bloody superpowers!!!

Ok, I realise my cynicism is dripping. It is absolutely pouring off of me. Now, I will confess that I absolutely hate disability being promoted like this. Now people will bite me, unfriend me, call me cruel or disown me, but its time to put the record straight!

People with a disability are not all the same. We are not this breed of humans with superpowers that magically make a workplace better.  Many of us don’t have frigging clue how other people wth a disability experience life. Some of us care less! Some of us are great workers. Some of us are just crap!  Many of us are motivated and committed, just as many are not. We people with a disability are a box of chocolates, you never know what you are gonna get. That’s because people with a disability are humans and flawed, just like the rest of the population. You employ a person with a disability, there is a risk that they are not all that you want them to be. – Just like anyone else.

And DISABILITY is not this mythical creature. A knight in shining armour or an angel who will magically make the workplace fantastic. A workplace is fantastic because of the people that make it up. Diversity is great because it promotes acceptance and inclusion. YES, diversity makes for a good workplace because it brings with it a diverse set of life experiences, skills and ideas. That doesn’t happen just cuz we employ a person with a disability. It happens by developing a good culture and valuing each and every one of the people in a workplace, whatever their background!

So, as a person with a disability I cringe when I see me marketed in a way that makes me out to be a mythical and incredible human being. Don’t get me wrong, I’m pretty good, innovative, creative, friendly and I provide brilliant customer service. I’m modest too. That’s not because I am disabled, it’s because I have been exposed to good role models, positive values and my overall life experience has made me who I am. Sure, being disabled has made me stoic, but it’s also, as you can see, made me very cynical. Who can blame me when I have to put up with this stereotypical rubbish about disability everyday.

Please, the marketers of the world – By all means, try as hard as possible to promote people with a disability as valuable employers. But market them as:

1)      A group of individuals who are diverse, with different skillsets, with different qualification who bring with them their own life experience that could be of value to a workplace.

2)      By all means promote the different ways we do our jobs. Promote how simple adjustments make us as productive as any one. Promote the technology we use that allows us to do the job as productively as anyone else. Promote the funding and support that is provided by Job Access and the Employment Assistance Fund so that employers know that if there is an additional cost for adjustments, there is help for that.

3)      MOSTLY, I ask that marketers focus on the diversity of people with a disability and the diverse range of attributes that they can bring to the workplace. Not because they are disabled, but because they are are individuals who are bloody skilled, experienced and good at what they do!

Look, I get it that there are many people with a disability that need more intensive support to be able to function in a workplace. They have every right to work too. Some of these people need an employer that will go an extra mile and be really flexible. It is not all plain sailing. These people should not be forgotten. 

BUT in Australia there are 1 in 5 people with disability. They are not all the same. They are not mythical creatures that will magically transform a workplace into a happy and productive one. They are just a group of individuals of which some are very talented and who have a wealth of experience, skills and attributes. Each of them is unique and they may or may not fit into the workplace.

All I can say is that the unemployment rate for people with a disability has remained around 53% for decades now. May be its cuz we have stopped valuing people with a disability as unique individuals and have stereotyped disability for too long. It’s time to rethink cuz what is happening now is not working!!!

With respect!

This is a response submitted to the Centre of Excellence for Disability Employment consultation on Disability Employment. You will gather, I don’t like the DES much. It’s a Waste of Space! Although I do not work in the employment space any more, I will do all in my power to draw attention to the disgusting and inhumane DES, until it is scrapped and replaced by a proper disability centred support!

Disability Employment Submission

I have been notified that The Disability Employment Centre of Excellence is seeking submissions in regard to the employment of people with a disability. As you know in Australia, despite currently being at full employment, the disability employment rate has remained static for several decades. In short, around 53% of people with a disability in Australia, who are able to work, are unemployed. This is an unacceptable statistic.

Much of this comes down to the totally inefficient and often cruel, Disability Employment Service. (DES)

By way of explanation, I worked for 14 years as a National Disability Coordination Officer for the University of Ballarat, Deakin University and the Centre of Disability Studies respectively. The program often interfaced with the DES to identify issues around transition and employability of people with a disability. I also worked in employment for the previously named Royal South Australian Deaf Society, The Deaf Society of NSW and Expression Australia, where I was the manager of Employment Services. I also worked as a Resume Writer under the old SkillShare system. I am well versed to comment.

Problems with the DES

There are many problems with the current DES system. It is a market system whereby to be sustainable a provider must place people. Getting people into employment generates income. Keeping people in employment generates income. The philosophy behind this is that the ‘INCOME’ acts as an incentive for providers to place people in employment.  It could be argued that this also acts as a disincentive for providers to place people who are regarded as being in the ‘TOO HARD BASKET.’

1)      Income as a Disincentive

What the ‘Placements for income’ actually does is encourage providers to focus on those who are most easy to employ. In this sense, those people most likely to be employed get the most attention. Those most likely to be placed and achieve placement milestones get the most attention. Those deemed as ‘TOO HARD’ get less attention.

Those in the too hard basket remain clients and get servicing fees, but meetings with these clients are generally short. Those with mutual obligations, who are not voluntary, are met and assisted to apply for work as they must, but to the bare minimum. Foe example, they will submit online applications just to meet the required number of job applications. Servicing is kept as short as possible so focus can be on those considered ‘most employable.’

There is very little incentive or motivation within this ‘MARKET/INCOME’ framework to work hard, advocate and develop a person with a disability considered to be in the TOO HARD BASKET. 

2)      Lack of Disability Knowledge

In my experience, in over three decades, there is a lack of genuine disability knowledge within many DES providers who are not Specialist Providers, which is nearly all of them. They employ people from marketing backgrounds or customer service backgrounds, for example, who have had little exposure or knowledge of disability.

Let’s use Deaf/HoH as an example. Unemployed Deaf community members require Auslan to communicate. Most people within the DES system do not know Auslan. Indeed, many providers will refuse to book interpreters for servicing meetings as this is an additional cost that they do not want to incur, particularly if they consider a person in the TOO HARD basket.

Many providers, despite knowing a person is Deaf/HoH, will insist on phoning the Deaf/HoH participant. When contact cannot be made, they are marked as non-attending. This can lead to payments being cut among other things.

It is worse if someone who is Deaf/HoH should attend an office and wish to obtain information. Front desk people and employment consultants are unable to effectively communicate with them or advise them. Similar issues exist for people with vision issues or cognitive issues.

There is a lack of knowledge of the adjustments that may be required such the technology that may be able to assist or workplace adjustments that may assist. Hence, when placing a person with a disability they often do not have the required adjustments in place for them to be effective workers. The lack of knowledge of these adjustments, often as simple as turning on the captions for a Teams meeting, using services such as Video Relay Interpreting or simply booking an Auslan interpreter means clients who are immensely employable are often placed in the ‘TOO HARD’ basket. More scarily, I have come across people in the DES system who have never used and understand less about how Jobaccess and the Employment Assistance Fund can support people with a disability in employment.

This lack of disability knowledge and understanding of reasonable and effective adjustments also means that providers are unable to effectively prepare many participants with disability for employment. It means they are unable to effectively advise employers as to how best to incorporate the person with a disability into the workplace.

Hence, rather than employ people with knowledge and design processes to effectively support participants with disability, the focus is on those considered employable, and those that are employable but have needs that are not well understood are placed in the ‘TOO HARD’ basket and serviced minimally.

This is the tragedy of the DES, namely that many of the people that work within it are ill equipped to support participants with a disability.

3)      Income and compliance drive, little focus on quality.

By nature, the DES is compliance driven. It is pedantic and focused on ticking boxes.  This is a disincentive to specialist providers and providers that are client focused and who go above and beyond to support clients.  The system does not recognise nor accept the unique challenges of clients with a disability and how this can impact on their ability to meet the strict rules of the DES. Nor does it recognise the additional advocacy work that is often required to support clients with a disability. For example:

A)      Clients with literacy and language issues who do not fully understand the rules.

B)      Clients that fail to meet mutual obligations because they lack the capacity to meet minimal requirements, often set by assessors who do not understand their disability.

C)      The DES does not recognise the hours of advocacy that are often required to assist clients. For example, current practice of many recruiters is to use online platforms. These platforms use AI technology that often invite clients to online interviews at short notice. If you are Deaf or HoH these platforms are often audio based and inaccessible. Because interviews are organised at short notice communication support such as Auslan interpreters cannot be arranged. Hours were spent advocating and informing companies of the difficulties Deaf/HoH clients had accessing these online platforms so as to try and create opportunities. None of these efforts are recognised in quality frameworks. By nature, placing people with a disability often takes longer and requires intensive advocacy and negotiation to open doors. None of this is recognised or paid for.

The consequence?  Providers go for the easy placements that generate income. Many people with a disability are just thrown in the ‘TOO HARD’ basket but kept on the books to claim servicing fees, with no intent to place. Worse, providers that do go the extra mile, are financially punished when clients struggle to meet compliance. Extra effort to support these clients is not recognised nor funded.

4)      Assessors do not know what they are doing!

A person with a disability must navigate a thoroughly complex and often inaccessible registration process. They are assessed by occupational therapy companies who gauge the level of support that is required. These assessors often do not fully understand disability. In the case of participants who are Deaf and use Auslan, they often refuse to book interpreters or any required communication support. If a client does not show for an assessment or if communication proved difficult these assessors often just put in standard reports that in no way reflect the true need of the client. 

For example, a Deaf refugee, who learnt Auslan as a fourth language, who is functionally illiterate and can not communicate by speech was supported by a mainstream DES. The DES informed the client of the upcoming ESAT assessment, without an interpreter. Consequently, the client had no idea as to what was required or when. The assessor, despite having never met the client because the client did not show at the meeting, produced the assessment that required the client to apply for 15 jobs a month. This is an impossible task for a client that cannot read and with severe communication barriers. They also ranked the client at level two, as only needing moderate support. Several times, because compliance was not met, the client had their income support cut, with no understanding as to why. Examples such as this are, sadly, all too common.

Conclusions and Recommendations

The DES is a cruel and heartless system that is based solely on compliance and financial outcomes. It does not recognise the unique needs of participants who have a disability. These needs often require specialist knowledge, intense capacity building and intensive advocacy. The intensive advocacy is required  to not only find placements but also address the systemic barriers that people with a disability seeking employment confront every day.

The employment needs of many people with a disability require patience, time, commitment and a fair deal compassion. The income and compliance obsession of providers and the DES administrators is not conductive to any of this. 

In addition to this, many employed in the DES sector lack knowledge of disability and the ability to support people with a disability with more ‘complex’ needs. This means that too many people with a disability who want to access the DES do not get the level of support that they need. This extends to assessors contracted by the DES who often do not understand the needs of people with a disability who have more ‘complex’ needs and rather than make the extra effort, take short cuts and produce inadequate assessments. This probably also occurs because the assessors wish to complete assessments in the shortest time frame possible and generate the highest income possible for their business.

The consequence is that providers seek the easy placements that will generate income and ensure all compliance is met. Those clients that are TOO HARD, do not get the required level of support needed to successfully obtain and retain employment.

Certainly, the fact that the unemployment rate for people with a dfisability has remained unchanged since the introduction of the DES in 1997, supports the view that the DES is totally ineffective.

It is recommended:

1)      The DES market-based model be scrapped as a means of providing employment support for people with a disability.

2)      That it be replaced by a specialist disability model where agencies understand and can support properly their disability cohort.

3)      That these agencies receive ‘Block Funding’ so that they can provide the required level of support.

4)      That agencies be able to demonstrate that their staff have the required understanding and experience to work with and support their disability cohort.

5)      That the NDIS be explored as a potential avenue to provide the funding for employment support for people with a disability so that this funding can be client centered and controlled by the client as much as possible.

6)      That punitive measures such as cutting income support for non-compliance be scrapped. This is a ‘blame the victim’ approach that is cruel and inhumane.

With respect

Gary Kerridge

The National Disability Insurance Scheme (NDIS) is an enigma. You love it or you loathe it. When it’s good, it’s very good. BUT, when its bad it’s dreadful! In my time in the NDIS sector the most frustrating thing was the amount of time it would take to make a decision and the stinginess of some Delegates who approved plans. In my experience there were many who lacked experience in disability and who saw their roles as gatekeepers of the public purse. For these people their sole aim was to keep plans to the lowest cost possible – (Cost effective plans they called it.)

My first Deaf plan when I started as a Senior Local Area Coordinator was for a guy who needed to upgrade his cochlear implant processor. His processor was old. He wanted the newest one with all the benefits it would give him. We were all new at the time as it was the beginning of the NDIS roll out in 2016. We lacked experience, because of this I probably made a hash of it. Short story, Delegate declined the upgrade because there was not enough evidence.

So I tried again at review time. This time with all the reports and evidence needed. I felt sure that it would be approved. It was not declined but the delegate kept asking for more information. A decision had still not been made 12 months later going into the participants third plan. By that time I had moved onto the agency as the Senior Planner and another Local Area Coordinator had taken over the plan.

This is where it gets really weird. The Local Area Coordinator, for the third time, requested an upgrade. By now, as a Delegate, I was actually approving plans myself. One day another Delegate, who knew me from my time as a Senior Local Area Coordinator, contacted me about a person wanting a cochlear speech processor upgrade, they wanted advice. Blow me down, it was the same participant who I had been trying to get an upgrade for all those years back. I explained the situation to the delegate who approved it on the spot. Excuse my French, but the whole process took three years – FOR FUCK SAKE!

I hate to say this, but I think Deaf and HoH people often get a raw deal with the NDIA. My favourite (read worst) was the Delegate who questioned the need for Auslan interpreters in a plan because, and this is a true story, the Deaf person could carry post it notes with them and have people write notes to them. No, I am not kidding.

The biggest issue, in my view, is the NDIA’s attitude towards approving new hearing aids. It SUCKS, pure and simple.

Now, people with vision issues wear glasses. They wear glasses to correct their vision and see better. Not everyone has the same vision loss. This is why people are prescribed different glasses. Us glasses wearers have all tried a friends glasses and gone, “WOAH”. This reaction is because of the difference in what people can and cant see is immense. It is, in fact, quite dangerous to wear wrongly prescribed glasses and can cause nausea, fatigue, blurred vision, headaches, and even vertigo; among other things. This is also true for people with a hearing loss who have poorly prescribed hearing aids.

In my view, the NDIA is hell bent on having people who are Deaf/HoH accept standard hearing aids because such hearing aids are cheaper. Sure, you can program these hearing aids to a persons hearing loss, but often this is not enough. Many people who are Deaf/HoH are prescribed certain hearing aids to match their hearing loss and life style. These can be pricey and the NDIA, more often than not, declines them.

This is dangerous. People choose hearing aids dependent on their life style. For many in the Deaf community hearing aids don’t actually aid speech perception all that much. Rather, they can help to enjoy music or even improve lipreading by giving access to sounds. For example, “PAT” and “POT” look very similar on the lips. Just hearing the A or O can help with lipreading. For many, hearing aids give access to music and environmental sounds providing them with a sense of connection and security. Being able to catch the bass of music can provide many with deep pleasure. Certain hearing aids can be more conductive to this need.

People more on the HoH spectrum require hearing aids to optimise their inclusion in diverse environments. At work, for example, they may need a hearing aid that adapts to the environment that they are in so that communication is optimal. Bluetooth capability might provide them with avenues to cut out background noise and be able to communicate better with work colleagues. Such hearing aids may have directional microphones or even artificial intelligence (AI). Hearing aids with AI can be programmed to smart phones to allow the user to automatically ‘hear’ in the most optional way that they desire.

The thing is, the NDIS was set up so that participants could participate in the community better, both socially and economically. Sometimes by investing in the most optimal technology for the individual this allows this to occur at a higher level. SO, if you invest in the better technology it will allow the person to participate better at work and in groups. It might allow them to enjoy music and encourage them to get out and about.

There is a multiplier effect in all this. When a person is confident and motivated to participate, they don’t do it alone. They bring their friends and their family. Money is spent in the community. This creates income and more taxes, which in turn helps to fund the NDIS. Just imagine a huge percentage of 6 million Deaf and HoH people in Australia who have hearing aids that meet their needs and that give them the confidence to participate. It means these people are more likely to have positive mental health and they will be less reliant on others. Surely, this is an aim of the NDIS?

A good hearing aid might make all the difference. But no, the NDIA only want you to have standard ones, if they will fund hearing aids at all. This stinginess and shortsightedness does more harm than good. Deaf and HoH people are made to jump through hoops. They are made to do trials and submit endless reports.

This process takes literally forever and it does enormous harm. A friend who lived in a regional area has been trying to get new hearing aids since the NDIS rolled out to their area. Before that, they had just bought new hearing aids themselves. Like a lot of people, they were very excited at the idea that the NDIS would get them new hearing aids. Like many they had a specific need.

Alas, it’s 2023 and she is still trying. Said my friend, “… A colleague used to try and get second hand ones from dead deaf people and see if they would sell the aids to them every few years because they couldn’t afford the new hearing aids.” This is the type of crap that the NDIA is causing with their stinginess and procrastination.

The worst thing is the impact this constant jumping through hoops has on ones mental health. When you have a disability you constantly have to justify what you need. Whether it’s support at university where you have to provide evidence of disability or whether it’s just to get the disability support pension, we Deaf/Hoh and disabled have to prove over and over again that we are not pulling peoples’ legs. This is often at great expense. But worse, it is an affront to our dignity.

Many professionals that provide the evidence and reports are not the most empathetic of people. They can sometimes make us feel like shit. My friend puts it best when describing being tested for new hearing aids:

“It’s a pass or fail. You fail, you get these looks. ‘You are deaf, but that deaf!! Tsk tsk’ , you need to try this or that.. You already know what you need but no no, they want to test to make sure and get you to hop hop hop til you fall.“

Yup jumping through hoops! And god forbid if you decide to appeal all the way to the Tribunal. The NDIA will screw every last inch of your dignity out of you. Just today the Saturday Paper headline screams, NDIA USED THE LAW TO EXHAUST PARTICIPANTS. The article pointed out that there are some people within NDIA who have admitted that certain people within the agency were more focused on money than meeting need:

““In our experience, many of the decisions which appeared to be in conflict with expert evidence were based on the decision-maker focusing on the sustainability/costs of the scheme rather [than] the validity of requested supports according to law which requires a holistic consideration of all the elements in section 34(1) of the NDIS Act“

I have supported a number of Deaf/HoH people to appeal through the Tribunal. I can tell you now that many of the lawyers who were assigned by the NDIA to these appeals were beasts. They often used language that was beyond the participants comprehension. They gave no reason as to why a decision was denied beyond that there was not enough evidence. They would drag out the case as long as they could in the hope that the participant would pack up and go home. Many did give up, it just became too exhausting.

The NDIA now claims that, as the result of their own review:

“We are focused on improving fairness for NDIS participants; providing better and earlier outcomes to reduce the need for matters to be considered by the AAT and reducing the reliance on external lawyers.”

Well, I hope so. Because the damage that they are doing to individuals with a disability is very real. The NDIA review report is due out at the end of the month. I hope its good, because some current practices are beyond cruel.

They have to do better!

I had the great fortune of working back in the Deafness sector for 15 months. It was wonderful after two decades of working in the hearing/disability sector. After over 20 years of having to constantly struggle for communication through interpreters, captioning or just because colleagues wouldn’t or couldn’t adapt, I found myself back where I belonged.

In those two decades the world changed. Rather a lot actually. There was a time where the only way that I could properly be included in a hearing workplace was through Auslan interpreters. I had to book them and pay for them. Of course I got $6000 EAF for Auslan, it did not last very long I can tell you. I was always lucky to have empathetic employers who were willing to foot the bill. But I had to be supremely organised. I had to book well in advance. Then, as now, supply did not meet demand. I had to deal with cancellations. I had to struggle through pen and paper conversations for those impromptu meetings. It was a constant struggle.

But now its 2023 and I rarely need interpreters. In fact I have not booked any for months. HOW? Well, because of technology. In the last few years the explosion of automatic captioning and it’s incredible accuracy has changed everything for me. I can use the phone, and the person on the other end is captioned. I have video meets with automatic captioning. I have an app on my iPad that automatically captions what people are saying. One on one, or even in groups of three or four. It’s all that I need.

So after 20 odd years, here I was at a Deaf Org. Hearing person comes up and asks for a meet. “Ill book a terp, Gaz.” to which I reply, “No need, Ill bring my iPad.” I know that many people are really intimidated by this new technology as they see it as a threat to Auslan interpreting. And given the track record of the hearing world imposing solutions on deaf people, I can fully understand that. There will always be a need for Auslan interpreters, I am just one of those that can utilise the technology and in doing so I lessen demand on the Auslan interpreting market, making more interpreters available for those that need them. The thing is, to be at an organisation that was taking responsibility and not just leaving it to me to resolve communication needs was refreshing.

Mind you, a negative in my employment was working in the totally ineffective Disability Employment Service (DES) space. The DES is horrible. It does not care about people. It does not care about about the often extreme barriers many Deaf and HoH face to get an employment placements. It will not recognise barriers in recruitment such as the move to AI recruitment and how this is often audio based causing enormous barriers for Deaf and hard of hearing people. It wont recognise any efforts to address these barriers through systemic advocacy. It just expects job outcomes, despite the barriers. Bums on seats whatever the problems may be. The DES is horrendous! I hated it. No, correction I HATE IT!

So, for 15 months I mostly had a ball, and then I lost my job! My position became redundant. I am at the tail end of my career and I was hoping that I could just retire in the Deaf sector. Alas, perhaps this will not happen. The Org I work for has hit troubled times. A restructure occurred where a number of jobs were impacted, mine being one of them.

I am supportive of the decisions that the Org has made. They needed to be made for the sustainability of the Org. Sadly, many people have been impacted. Loyal servants of the Org who have been there for many years have lost their jobs. Young people with mortgages have lost their jobs. Some are angry. Some, like me, are disappointed but understand the realities. Others are completely devastated. All of us have the uncertainty of not knowing what lies ahead. Unfortunately, the majority of the people impacted have been Deaf and HoH people, which is sort of ironic.

Many want to blame. They want to criticise They need a scapegoat. This is futile. The difficulties the Org are facing are resulting from the harsh reality of not being able to yet adapt to this new National Disability Insurance Scheme (NDIS) world. Many before have worked long hours and tried different ways to adapt and generate income. It has not worked and the Org has to now make tough decisions. Believe me, the Org is not alone. Many other organisations are in the same boat. This article in the Guardian Newspaper demonstrates the harsh reality that many disability organisations are confronting, read it here.

What the NDIS has done is it has changed the Deaf sector. I come from a time of the old Deaf Society. Each state had one. ‘Deaf Society’. These were organisations that were largely set up on the backs of Deaf Community members to serve as a community centre of support for the Deaf Community. Over time they became welfare organisations that provided social support and a community centre for the Deaf community. They received block funding from state Governments and relied heavily on fundraising as well. Many struggled and over the years the much loved Deaf clubs have been lost as the financial realities of survival hit home.

BUT! What the ‘Deaf Society’ in each state did was work together. There was an Association of Deaf Societies that worked on common issues. They supported Orgs like Deaf Australia during the campaign for the National Relay Service. They found common ground and lobbied together on issues. Every few years one would host the the National Conferences. I vividly recall the 1988 and 1993 Australian Deaf Games where the thriving hub and registration point was the Deaf Society. Depressingly, all of this is now a thing of the past.

Wonderful thing that the NDIS can be, it has divided or Deaf community. There is now no longer a ‘Deaf Society’ in each state. Now there are just two big warring Orgs battling for ground to get as much of the NDIS market as they can so that they can survive. Competition can be a healthy thing, and until recently I used to think that it was. Not now, because the competition that I am seeing between these two Orgs is just nasty. The Deaf community is poorer for it.

After nearly two years in the space I have come to the conclusion that there is no room for two Orgs. The Deaf community is too small and too fragile. The issues and the barriers that Deaf people continue to confront are huge. Perhaps we need go back to the old ‘Deaf Society’. A model that puts the Deaf community at its forefront. A model that has an office in each the state providing equal support. A model that is sustainable and profitable. A model that is represented equally from Deaf community members in each state and decides who will lead it. A model that puts the profits it makes back to the Deaf community to assist the Deaf community become strong and vibrant again.

A model where profits are funding the arts. A model that contributes to the proud and much needed Deaf sports so that the Australian Deaf Games can be that wonderful community based institution it once was. A model that can support those vulnerable members of the Deaf community to the maximum. One that can support Deaf Australia and state based advocacy organisations to thrive and to break down those barriers (Like the DES) that Deaf and HoH people are confronting everyday. Dream it, think of it – It has to be better than the war that is happening now where survival appears to be the only aim!

Not a separately run ‘Deaf Society’ in each state but a Deaf Society with an office in each state. Where services and supports are provided equally and equitably across Australia. Let’s call our new big and vibrant organisation ‘The Deaf Society’. Working for the Deaf community and contributing back to the Deaf community. Collaborating, cooperating and existing! We can dream! It’s gotta be better than the unholy war that we have going on now!

With respect!