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‘deaf defying’: Tales of disability resistance through the ages, and a trackline to disability excellence.
2024 Disability Leadership Oration
National Archives, Canberra
Dr Scott Avery
Gudji Yigyuu, which is hello and welcome in my native language of Gathang.
As is a respectful custom in our nation, I would like to start my address by acknowledging the traditional owners of the lands on where I am today, the lands of the Ngunnawal people, and to the Elders of the lands of those who are livestreaming are today. A lot of what I will be talking today about comes from the Elders in my First Nations disability community, some who are here but many of whom who have passed, their knowledge given as a gift to me that I may share with others, so I give my respect and gratitude to them. I also want to acknowledge the presence of the many Indigenous brothers and sisters that I have here today in person and in spirit.
It’s truly and honour to be asked to give this year’s disability leadership oration. Many from the disability community struggle to find a platform to have their voices heard, so the privilege in being able to speak to you today in not treated lightly. That this oration exists in testament to the vision and determination of my very good friend and colleague, Christina Ryan and the Disability Leadership Institute. There’s only a slight difference between leadership and eldership, and what you are doing for the disability community is synonymous with what our Elders do in Indigenous communities.
I’m Scott Avery. Professor Avery is a title that the University has given me, but ‘Dr Scott’ is a name that comes from my First Nations disability community, and it reminds me where I came from. More recently, some of the students I teach have started using it, and that makes me dream of where things are headed.
With the number of degrees and qualification that I’ve accumulated over my many years, I’ve certainly taken life-long learning to its extreme. Along the way I have been fortunate to learn from both professors at University and Elders in community. I have what I refer to as a ‘celestial panel’, a group of Elders and professors, now passed, who have shaped how I see the world of disability and inclusion. Their wisdom and knowledge was given generously, and in that spirit their gift is carried forward into many of the themes that I will speak to today: first, on a culture of disability inclusion that accepts all comers; second, how the character of disability leadership and excellence expresses itself as an act of resistance; and thirdly what can we learn from past tales of disability resistance to create the conditions in which disability excellence and inclusion can take hold.
Before I dive into the wisdom and insights that I’ve picked up on disability leadership from my celestial panel, I thought I might give you a background to the raw materials that I had to work with.
I’m deaf and an Aboriginal person from the Worimi people of New South Wales. My deaf story began when I was in my mid-teens, when out of the blue we were asked to do hearing and sight tests at our school. I lined up like everyone else in my form, but not long after that I got called out of class to go down to the principal’s office. Because that is where they actually did the tests, in the principal’s block, so I’m thinking, “okay, what am I getting stitched up for now?” And when I got there, my form advisor and the people who did the test had their sad faces on, and they said “do you know that you mid-range hearing loss?”
“Ah, sorry, what??” (It pays to have sense of humour to survive in this game).
So that is when my life as ‘the deaf guy’ begins. This sends me down a tech-path of putting gadgets and widgets in my ears that I’m told will magically cure me of my hearing loss. This is the eighties when everything was big, glam and bold, so these gadgets are like carrying boom boxes. There is no hiding them. And to get these gadgets, you had to sit in a soundproof booth for hours on end while some-one presses a button until you think you can hear something. Which, when you have what I have, you don’t hear anything, but do I admire them for their optimism and tenacity. And what strikes you about these hearing tests is that you have to fail the test in order to get the gadget. Not once or twice, but you have to fail over and over again (I think is just to make sure you aren’t there trying to rip off the system for a free hearing aid). Then you every four or five years or so, you go back and repeat the process of failing over and over again in order to get the latest model once the one you have falls to pieces. Every now and then, something new and exciting comes along like the National Disability Insurance Scheme which you think might change how you are seen, and then one of the first things you have to fill out is a Hearing Handicap Inventory that asks you how handicapped you are your hearing problem. [As an aside, I’ve found out that the Australian version is actually better than the US version which actually asks how “dumb or stupid” you are made to feel by your hearing problem]. From time to time, in my expert role as a deaf and Aboriginal person, I’m asked by people from the hearing service sector why young Aboriginal people don’t want to engage with hearing technology. My reply is that it’s because their business model is predicated on establishing a failure that only their technology can fix, and young people don’t want to go through an intensely stigmatising experience just to pick up some cool bionics [you may not see that in their research reports].
Just as the deaf life is coming to fruition, I’m getting encouraged to go on with my studies [in reality this was more a process of elimination – “oh geez, don’t do a trade, you’ll kill someone”, “You’re good with books, go do Uni. I’m sure they will have you”.] One piece of paper led to the next, and in time I ended up doing a PhD. When I started this, I had been working in heath policy supporting many of the Aboriginal health leaders on the National Aboriginal and Torres Strait Islander health plan. That’s the one that envisages a health system free of racism. As the health policy people were talking to the doctors, the allied health professionals, and I am quietly wondering ‘where are the voices of people with disability?’ Our story was being told through intermediaries, people providing services to people with disability, but for all the good will intended, it was not by people with disability themselves.
One thing I picked up from the Aboriginal leaders at this time is that you can’t delegate your truth-telling to others. They don’t have enough of the ‘why do it’ to motivate them – you have to do it yourself. So that’s when I came up with A PROJECT, and my project was to ask as many Aboriginal and Torres Strait Islander people with disability as would speak with me one question – ‘what is your story?’ As it turned out, forty-seven Aboriginal and Torres Strait Islander people with disability turned up wanting to speak with me on the record; starting at home base in Redfern, to regional NSW, South Australia, out to Broken Hill and Wilcannia, into Alice Springs, through the Utopia homelands, and into Tennant Creek which become something of a spiritual home. It was forty-seven personal tuitions in the reality of disability experience and inclusion for Aboriginal people. Their stories became the book Culture is Inclusion. [I have my ceremonial copy here today and it is my talisman]. Then came a PhD; and then teaching curriculum; and then – ten years after I wrote my first policy to include disability in Closing the Gap – a research program supporting First Nations disability sector strengthening across Australia’s Disability Strategy and Closing the Gap.
Along the way, I was well supported by Aboriginal professors who I could look up to. There were support networks for Aboriginal students. Not to talk down the struggles, at least I felt that I belonged there and could find a place as an Aboriginal scholar. But I didn’t have that as a deaf and disabled person. I had this sense of an invisible wall curtailing what I could or could no achieve. Despite the credentials, I would see others sail straight by me into leadership roles. And everyone and then the ablism that simmer below the surface would leak out. There was one time when I was doing my PhD, I wanted to interview Deaf Aboriginal people in Auslan. They were excited by this saying that they hadn’t been involved in research conducted in Auslan before. But when I submitted my ethics proposal for review, the Heath Research Ethics Committee came back saying that I needed to put in place special procedures to make sure that the deaf participants had the capacity to participate in research. You start thinking that this was something personal, but when I looked around, all I could ask was “where are all the deaf people?”
You do your best to deal with the deaf experience of being seen as broken and in need of fixing with as much humour and grace as you can muster, but after a while it can drag you down, and you feel increasingly isolated. When I felt like this, the Elders from my First Nations disability community stepped in. Their message was “You’re deaf for a reason, you know. That’s the old way. You just need to find out why and what your purpose is.”
As this was sinking in, a story that was kept within its community for 25,000 years came to life, singing to me and many others in the First Nations disability community. It’s the story of the one-legged Mungo Man. Out at Lake Mungo in western NSW, there are footprints in the clay. Amongst those footprints is a single right line of footprints. The Western archaeologists were baffled by this, so they asked the Elders of the region what was going on. They said it was a one-legged man, and he was on a hunt with his community.
We tell this story now as an emblem for an Indigenous culture of inclusion. It speaks to a worldview in which everyone has a place and purpose, and all people are valued for the inherent worth that they bring to their community. It was life-changing learning for me, transforming me from someone impaired by a hearing loss, into being gifted by the silence, able to retreat into my natural world of complete quiet that only I can enter. The Indigenous cultural value that everyone has a place and purpose is the centrepiece of Culture is Inclusion, a slow-burn strategy to get people in the disability services systems thinking that maybe there is a better model.
While an Indigenous culture of inclusion sets a optimistic vision for an inclusive world for people with disability, the hard work as always comes in the implementation. It requires unlearning conditioned thinking and relearning a new systems logic and practices using a different set of values and assumptions. The past few years has been particularly demanding on the implementation front. After years of having the stories of our disability experience prodded and poked, we find ourselves in an unsettled present, many in our communities uncertain and frustrated as to whether meaningful change will come from them.
As is the Indigenous way, the present has a past and will have a future. It seems fitting to be here in the National Archives to talk on the importance of knowing our disability histories, and how our leaders past embodied disability excellence as acts of resistance. In moving to this next theme, I’ll be drawing out some of the key attributes of Indigenous disability leadership that I’ve witnessed first-hand from our Elders.
The first one Elder whose history I looked to was Aunty Gayle Rankine, now passed. Along with Uncle Lester Bostock, she was a driving force in establishing a disability rights movement for Aboriginal and Torres Strait Islander people, resulting in a community organisation now known as the First Peoples Disability Network. Aunt was the first person I interviewed for my PhD. Her educational story – shared here with her permission – was that she was shut out at the front gate, not able to re-enter the education system after having to leave it due to acquiring a disability. She said told me once “there’s one thing I want to do before I leave this earth is to have a degree in Human Rights law, and I will be happy with that”. It stings me that she could not see educational justice within her lifetime. Still she continued to put herself at the coalface between our community, the government and the service systems.
Looking beyond the message is how our Indigenous Elders have modelled, and continue to model, leadership. Disability leadership requires you to be pitch perfect in thought and execution. You have to be bold enough to speak truth to power for your community, but constructive enough to be invited back to talk solutions. You have to bring just the right amount ‘lived experience’ to demonstrate empathy with the issue that you are speaking to, but not so much to come across self-indulgent, or alternatively a weak and vulnerable victim.
Then, you must make strategic choices about who you work with in the abled bodied world as partners and allies. For disability leaders, partners and allies who can advance a vision of inclusion through practical change are like bright green lily pads in a pond. The frog navigating their way through the pond must jump from one lily pad to the next. The problem for the frog at the moment is that the patches of bright green lily pads are spaced too far apart and in between. The frog must stop and consider their next jump carefully, timing it to perfection to avoid falling into the murky pond.
The pressures of being pitch perfect as a disability leader demands a standard of excellence. I mean ‘excellent’ in a chest pumping way. What this means is that our leaders must be excellent, not by choice, but because we know the consequences if they are not.
So if excellence is the standard of our disability leaders, then that is the standard for all of us in the sector. This means that if the disability strategies and action plans in our service systems and institutions do not meet the standard of disability excellence, then they should get sent back. This is not to question their intent or commitment of those who work on them. It is because we know if they are not up to the standard of disability excellence, then both the frog and the lily pads will be washed away the next time the heavy rain comes.
I’m moving now to the final theme of my oration on creating the conditions in which an inclusive culture can proser. To do this, I’m turning again to my celestial panel, going back further in time to reconnect the Elder-ancestor who I have connected with most in seeing the cultural way of being a deaf person in a hearing world.
A few months agon, I was feeling burned out. A colleague of mine from the University met me for a coffee and they suggested “you need to spend some time just hangin with the one-legged Mungo man”. It was the perfect tonic, so I took a step back from the noise– took my ears off and went into my natural world to meet Mungo.
You might need to fire up your imagination, and see us sitting around the campfire. There’s a bit of blackfella banter to break the ice [me saying ‘you’ll have to speak up because I’ve got dead ears, and him saying “don’t be cheeky or I’ll kick ya”]. We talk about how his story has become an icon seeing people with disability in a different light. We talk about how amazing it that one person’s moment on one day 25,000 years ago is still having an impact on people today, and what that tells us of the power of capturing and re-telling stories. I wonder if he is ok with that, as sometimes it feels invasive. I’m reminded that like the people who came to tell their stories for Culture is Inclusion, the stories of one become the stories of us all.
I then hear myself complaining a bit too long and loud about how tired I am and that’s it’s all a bit too hard. Then, the one-legged Mungo Man sits me down for a masterclass moment:
“Do you really think that I got in on the hunt without a struggle?”
[The ancestor schools the professor.] And with that sparkle in the night sky, we can re-imagine the conversations where the one-legged Mungo-man makes his stand. “I’m going on the hunt tomorrow”, he says. The others sitting around say, “Nah mate, you can’t come on the hunt, you’ve only got one leg”. “Well, I’m going”, replies the one-legged Mungo Man.
And when he goes on that hunt, he gives us two things. First, he gives us a vision of inclusion of people with disability that has stood the test of time. That is what you have heard of earlier, the subject matter of his story. Second is what it says about disability leadership and excellence. What he has also given us is an act of disability defiance that can be traced back 25,000 years. Disability leadership has a very long history.
Re-imagining the impact of the one-legged Mungo man’s act of resistance shows us what is needed for inclusion to propose. It tells us that if you want an inclusive culture for people with disability, then you are going to have to make it. Inclusion is not going to magically fall from the sky. It also tells us that there are two parts to making an inclusive culture. First, it takes someone to stand up and challenge the established expectations and ways of thinking. That is One-legged Mungo Man saying he will go on the hunt regardless of what other people think he is capable of. That is what our disability leaders and innovators are doing today.
But is only one part of to the mix. It also requires the others sitting around the campfire to go “ok, you’re in”. Only when those two things are present can you make an inclusive culture for people with disability, and only can we collectively buy into the disability excellence agenda.
Some final thoughts to round out this oration. I earlier described Culture is Inclusion as a project. It was an idea that came from and was owned by the disability community. There was a shared vision, and people with disability and their supporters new their place. The end goal came together in the shape of this book, a gift to be used by others in the disability community to share their cultural stores of disability and shape an inclusive future their way.
I think we need another project. A healing project that brings harmony in the present after a traumatic recent past. A project that is owned and led by the disability community, that brings the disability sector around a shared vision that is optimistic for an inclusive future.
We will all have a role in this inclusion project. Disability leaders and innovators have the job of challenging the system and building the specifications for a better model. Disability organisations are at their finest when they are in the room in a principle-based collaboration with those who can make an inclusive future with them. They are the standard bearers, and the standard is disability excellence.
Our allies and partners have a role. You have been the bright green lily pads that disability leaders have landed on when needed, as the frog navigates it way through the pond in the metaphor for disability excellence we told earlier. You now must grow wild and take over the pond, so wherever the frog decides it wants to jump, it knows it will land safely.
And to the generation that will follow us, our ‘Elders and leaders emerging’, your job is to honour the struggle in the histories of disability that have come before you. The track line set by the disability leaders in the past help you know your place in the present, and where to head in your future. Fill the archives with tales of disability excellence and defiance through the ages, and then add your own.
With those final thoughts, thank you again to the Disability Leadership Institutes for creating this opportunity to talk disability today. Thank you to everyone for your respectful listening today, both here in person and to those streaming online. You are unique and the contribution that you can make to an inclusive world for people with disability. You are all special people.
Marrangbu nyaanyabu djurmi, which is thank you, take care, and I will see you out on the single right-footed trackline.
Dr Scott
21/11/2024