Program: Deaf defying: disability leadership as an act of resistance — with Dr Scott Avery

PLEASE NOTE: TRANSCRIPT MAY DIFFER FROM DELIVERY

APPLAUSE

NATASHA MITCHELL: Dr Scott Avery is a descendant from the Worimi people whose traditional lands you’ll find around the eastern Port Stephens and Great Lakes regions of NSW. Big, beautiful country with big, beautiful skies.  And it’s to the sky that Scott turns for today’s story of power and purpose, and possibility  

DR SCOTT AVERY: And with that sparkle in the night sky, we can reimagine the conversation as the one-legged Mungo Man makes his stand: “I'm going on the hunt tomorrow,” he says, the others sitting around going, “Nah, mate, you can't go on that 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 the vision for an inclusion of people with disability that has stood the test of time.  But there is also a message about the nature of disability leadership and excellence, because what he has also given in taking a stand against the expectations of others is an act of disability defiance. It is an act of defiance that can be traced back 25,000 years. Disability Leadership has a very long history in this country. 

NATASHA MITCHELL: And Scott continues that work of his ancestors – as both Professor of Indigenous Disability and Wellbeing at the University of Technology Sydney AND as a profoundly deaf man.  And on this UN International Day of People with a Disability he’s here to give the 2024 Disability Leadership Oration ...brought to you by the Disability Leadership Institute and today by the ABC.  The UN theme this year is "Amplifying the leadership of persons with disabilities for an inclusive and sustainable future". And here is Dr Scott – as he's often called – with his DEAF DEFYING presentation.   

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. I have big shoes to fill following the inaugural Disability Leadership oration by Natalie Wade last year. 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 split hair’s 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 they 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, year 9 Figtree High School it was back in my hometown of Wollongong, 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 was that??” (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 late 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, in order to get the latest model once the one you have falls to pieces you go back and repeat the process of failing over and over again.   

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 don’t young Aboriginal people don’t want to engage with hearing technology’? I say that my best guess would be is that it’s because their business model is predicated on establishing a failure that only their technology can fix, and having been a young person one, don’t that they would voluntarily submit to that kind stigmatising experience just to pick up some cool bionics [you may not find that opinion in their research reports]. 

Just as my deaf life is coming to fruition, I was 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, and 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 and friends at the First Peoples Disability Network 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. This was a truth-telling project that pre-dated the Disability Royal Commission by three years. 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 special copy here today that and it is my talisman]. Then came a PhD; and then teaching curriculum; and then - ten years after I wrote my first policy submission to have disability recognised 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 around me curtailing what I could or could no achieve. Despite the credentials, I would see others sail straight by me into leadership roles. And every now and then the ablism that simmers 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 Health and Medical 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. They went back and measure the steps, and concluded, yes he was on a hunt and not straggling behind.  

We tell this story now as an emblem of 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, and we talk to this 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, we see 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 Elder whose history I look to is 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, which was a highly symbolic choice. Her education 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 in her undergraduate years. She told me “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 hearing and able-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 don’t 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 inclusion action plans in our service systems and institutions have not been produced with the mindset of disability excellence, then they need to be 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 has spoken to me the most in seeing its ok to be deaf, its my natural world, just own it.  

A few months ago, I was feeling burned out from the past few years that were. 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 medicine, so I took a step back from the noise– took my ears off and went into my natural world to just sit with him. 

You might to 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 ancient story has become iconic in todays world for seeing ‘disability’ in a different light. We talk about how amazing it is that one person’s moment on one day 25,000 years ago can still have an impact on people today, and what that tells us of the power of capturing and preserving 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 came together with others to become the stories of us all.   

I tell him there’s a new wave of storytellers who are going to add to the Culture is Inclusion anthology. Some are deaf, some are autistic, some are trans, some are non-binary. New faces popping up to push our comfort zone in what we think we know about ‘intersectionality’, and to test our resolve to do something about it. All young people with disability who speak of having to perform in a world that does not fully accept their true selves, even in places that proudly boast of their inclusiveness. But they find their expression in their arts and solace in their coming together with others who feel the same. The premise of the one-legged man’s story of inclusion holds true.  

Still, the sadness that wisps through the stories of young people is triggering. It is the latest affront to the optimism that our community is desperately trying to cling to. I start hearing 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 goes quiet now and sits me down for his masterclass:  

“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 as 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 for the inclusion of people with disability that has stood the test of time. That is what is celebrated so far, the subject matter of his story.  There is also a message about the nature of disability leadership and excellence. Because what he has also given us in taking a stand again the expectations of other is an act of disability defiance. An act of defiance that can be traced back 25,000 years. Disability leadership has a very long history in the country. 

Re-imagining the impact of the one-legged Mungo man’s act of resistance shows us what is needed for inclusion to prosper. 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 First peoples disability community. There was a shared vision to focus the minds, 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 reclaims our right for an optimistic and 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 supporters: the Achieve Foundation, National Australia Bank, ABC, the Disability Innovation Institute, and UTS Disability Network, for being the bright green lily pads on which this Disability Leadership Oration has landed and from which future ones will launch from. Thank you, my travelling partner, for life Alison who has walked side by side with me through the valleys and the hills.   

And thank to everyone for your respectful listening today, both here in person and to those streaming online. You are unique in contribution that you can make to an inclusive world for people with disability. You are all special people, each with a place and purpose on this earth. 

Marrangbu nyaanyabu djurmi, which is thank you, take care, and I will see you out on the single right-footed trackline. 

APPLAUSE

NATASHA MITCHELL: I’ll see you there too. Emotion, strength and clarity right there from Dr Scott Avery, who was delivering the 2024 Disability Leadership Oration. Scott’s book 'Culture is Inclusion: A narrative of Aboriginal and Torres Strait Islander people with disability' has been very influential. You might want to get hold of a copy. 

Natasha Mitchell with BIG IDEAS on ABC Radio National and the BIG IDEAS podcast. Be sure to find and follow Big Ideas on the ABC Listen app for your front row seat to big thinkers at the best live events.  

Now stay tuned, Dr Scott is joined now by the Christina Ryan, the founder and chief executive of the Disability Leadership Institute who is the host of this annual event at National Archives in Canberra. 

CHRISTINA RYAN: You and I have spoken over the years, many times about how we approach disability from this intersectional space, and how we talk in terms of, as you say, the lily pads, but also the history that comes with us, and how we can give that to our new folk, our young people, or our recent arrivals in the disability community. And I'm really interested in how we do that stuff, because it seems so simple. So why is it so hard for us to achieve that more holistic view of our community? Why do we seem so siloed, not just around separating out disability, but separating out different elements, different intersections within the disability community, what's going on?  

DR SCOTT AVERY: I think the way that when we talk about disability, I always say it's in thick, miles wide, it really challenges how our knowledge systems, our government departments, are set up, and there's a comfort zone in having a depth of knowledge. So there's a Department of Health, a Faculty of Health, a Department of Education, and a Faculty of Education in my world, in the universities. And  so intersectionality challenges that, and I think how we deal with problems and how we're taught, and this is a western knowledge system, is we're taught to deal with problems as complicated problems. So I go step one, step two, step three, because that's what we know. If I go step A, that's an improvement of understanding, depth of knowledge. And that is how our western knowledge systems are conditioned, and that's how you become an expert. Intersectional is not like that. It's complication. It's not complication. It's complexity you have in our world, First Nations and disability coming away is colliding in a way that no protocol is going to be able to capture. So it actually challenges the structures in which how we learn and how we work, and I think we've got the whole idea of intersectionality. It's not like, Oh, you happen to be an Aboriginal person and a person with disability, and I know that, and I can do that. It's actually, not who's in the room, intersectionality is who is not in the room? Whose stories are we not hearing? And the idea of intersectionality informed policy is to keep stepping outside that room, pushing the boundaries of what we know. But that's challenging. That challenges people who've been brought up, spent entire careers in one department and conditioned here, and you don't step out of line. So I think this is what I spoke about as having to unlearn that. You have to unlearn what you've been conditioned to think and step into a new way.  

CHRISTINA RYAN: To me that interrelates to what you were talking about with the who's in the room and who's out of the room when it comes to who's allowed to speak and who is so far outside the comfort zone that it’s too challenging. Let's just not include them. And you referred to some of the processes we've had in the disability community in recent years, and there's been a lot. The Royal Commission, of course, is a big one, but we've had the national strategy development. You and I have also been involved in the research partnership and the data asset work, so there's been a lot of different processes, and now there's a revisit of the national strategy. Apparently, we're doing all of these things. And yet the comfort zone for many people on the inside is such that we're not talking to the 47 people that you spoke to for your study. We're not talking to some of the people who are in rooms where they're not seeing the outside world very often, we're not talking to the people who are loud and brash and awkward to have a conversation with, because they say things that disturb us. They tell truths. How do we find our truth in a context where it's really uncomfortable to actually be having that conversation? And you know, we're sitting here in this national space, talking on national radio, and yet there is a discomfort about the word “disability”, that is even the first discomfort to get through the door before we move into excellence or saying something that's awkward or challenging or takes. Somebody so far outside their existing structures that it's just not able to be received.  

DR SCOTT AVERY: It's fascinating being someone who's Indigenous and come up through that path of disability actually have a compare and contrast. And if I was to consider the world now, it's like you're really being stretched. So the Indigenous side, there's a lot of attention. People want a lot of it. It burns you hot, but the awkwardness of disability is still an awkward discussion of freezing cold. So it's really weird situation to be in. And I kind of think, well, I can have discussions. I can talk about disability, leveraging from First Nations - the discussions there, and it's a different experience to talk about racism and ableism. And I can do I can have those conversations. As to what takes change, Aunt, who I spoke of, just said, “Look, you just got to keep turning up and hold to your principles. Do not compromise on your principles, but always turn up for the solution.” And what became very disempowering for me, but I worked through that, is the sense of responsibility you have. And you go, well, actually, I can't be responsible if the system's changed or not, all I can be responsible for is the integrity I speak to about my community, and that's all I can do. And young people say that to me, my students are going it's kind of weird in a way. We're not like teaching a sort of scientific discipline where the more time you spend on it, you get more comfortable, the closer you get to this interface between our community's values and the institutions, paradoxically, the more uncomfortable you come. And that's actually a litmus test for you. If you're feeling a discomfort, you're going, I kind of think you're doing the critical work that we need to ultimately get change. So that's the best. I'd love to have had an answer, but then I probably would have been out of a job. So I think that's what many people in institutions might be thinking as well, but... 

CHRISTINA RYAN: Ah, that one, it's when we talk about ableism.  I'm not an Aboriginal person, so that experience of racism for me is both foreign and disturbing, and all I can liken it to is the marginalisation of ableism, which is not the same, but is still marginalisation. And recognise that the spaces that we're in, you know, if we think about today the - the thinking we have to do into making this accessible for our community, how we have to think all the time in terms of who's here, who's - who's able to be here? How do we make it possible for people to be here? Where can we go and still being in a position where so many places are not just physically inaccessible, but they are unwelcoming. I'm thinking, actually, as I say, that of the security system at Parliament House, which is still revolting for many of us to go through, particularly if you have equipment of any kind. And I was speaking with a young DLI member yesterday who was doing some lobbying up at Parliament House, which is just across the way, always interested that we're in the building next door and not in the big building. And they were talking about doing this work, and they're there on a national platform, talking about important things, not disability specific. And yet the building was so inaccessible that it was almost impossible to be there. And yet, Aunty's talking about showing up, which is an important piece of advice. So, we're dealing with the ableism of the inaccessibility, the ableism of people thinking, Oh, you're only here for a short period. You're just here for that one day. So it doesn't matter that this building that was built 40 years ago is still so remarkably inaccessible. Where do we start? There's so much that we could be doing. There's so many things that are brick walls in our faces. That are not just physical infrastructure that doesn't let us in, but people who don't want us there. People who find us awkward. Structures that are not designed for that intersectional approach, so the silos of different structures. Where do we start? You know, where's the sort of bit that we focus on first to get it all coming together  

DR SCOTT AVERY: Again, thinking of the Indigenous way, we focus first on our relationships, the relationship we have with people. Now, I don't embarrass the people who are sitting there from the Australian Bureau of Statistics. But I'm working on a data project with them, and I've known the Australian Bureau Statistics for maybe 15 years now, and just recently - and the reason I want to talk this, I think it's really opened up our minds around how someone from community can work with the government - and they gave me a staff card. Don't tell anyone. But no, they gave me a card and they said, I actually go and I can walk in. I sit with a team, and we're writing a paper together, and they show the data, and I go, and this is how I read the data, and they go, but you're not seeing this, because this is intersectionality. Your data systems will only have this view. This is what you're not saying, because they're the people that talk to me. And we've really got this when you when you feel like you're not welcome in the room, either due to the physical access or the mindset that people carry them, you kind of feel like, oh, they don't trust us, so we don't trust them. And it becomes a downward spiral. The reason I like talking about the Australian Bureau of Statistics is we just have that trust now. I said we got that right. We have that right now, and then the answers are coming. And I said, work on the relationship. That is the Indigenous way. Lesson number three.  

CHRISTINA RYAN: So that's about the physical infrastructure and the people having attitudes, but then what we're doing is living in a society where we've got, you know, the big structures, fundamentally we're living in -  well - I'm going to talk about the patriarchy and capitalism now, sorry, didn't include those words for the interpreters beforehand. But the, you know, this is the way we do things. This is the way government runs. This is the way people get appointed to positions. This is the way our parliamentary structures work, and our building is built around how that looks around the structure that we want it to support, even the way the laws are made and the speed at which some of those processes happen. And it's happening very fast this week, in some cases. So when we're talking about changing those big picture structures, how do we bring that back down to the relationship space and turn it into more of a reality that people can attach to.  

DR SCOTT AVERY: So the nature of structural ableism is that pervasive and profound, I think we need two things. First, we need a 50 year plan that understands and responds to it, but a two-year plan to get on with it. So I just kind of knowing there's so many things we could do, but don't let that stop that doing something because it can be overwhelming. Now, the long term strategy, I'll tell you what I did. So it was about 2015 and I just been talking with New South Wales government department, and I’m going, :I just can't do this systemic advocacy too much more”. And it occurred to me, if we want to change, we have to be teachers. We have to be teaching this. And I thought, I've now skipped a generation, so I know that there are watch parties happening in universities, students watching in today, and they will hear this, and they'll be doing it. They mightn't be able to act on that straight away when they get into a job, but sometime down the track, they'll be the ones who are making decisions, and they've been taught with the critical skills. How do I solve a problem, not just default back to this is what we do, because this is what we've always done. That's what the struggle is. That's what we have to fight for. And I think when I look at the students down the live stream watching in on that, that's actually where I get my optimism from.  

CHRISTINA RYAN: And therein lies the tale. I'm always amused by - you talked about, you know, just to get personal on this for a minute between us, you know, because it's just you and me, Scott.  

DR SCOTT AVERY: And the red wine. By the way, we did that. Are we much more funny?  

CHRISTINA RYAN: We'll get a champagne in a minute. You talked about getting tired of it, getting exhausted by it, and the need to go back to community, or to go back to elders and to be recharged. And so many of us who've been working in this space for so long have that experience. So I'm just bashing my head against a wall here. Periodically, there's a gain, but then there's so much that that causes backward steps as well. Talking a lot in terms of steps at the moment, which is a strange thing to be doing, given that I don't do steps. But anyway. And that recharge space, and I want to get back to that relationship conversation that you were talking about, because in some ways for me, and I'm really interested in your perspective on this, that responsibility that we have to be working within our community, in all of its messy diversity and intersectionality, to be growing more and more people. So it isn't just you and me and a few people I can point to in this room and a few others watching online. It's actually all 5 million of us participating in a way that is actually creating that wave of change, and it means that we aren't needing to be the individual, active people. That we don't have to keep recharging, that we can step back. That does that sit with you as a presence? Does it turn up occasionally? How do you look at that level of, is it a responsibility, or is it just how we live lives as human beings?  

DR SCOTT AVERY:  I think it comes back to that idea of, we have to be excellent in all aspects of our lives to be seen a leader, an obligation, that we have, have to turn up with everything. And I think I'm not really good at self-care kind of thing, but lately I've just had to give my permission and go, “actually, I have to stop.” You just physically cannot keep going. And to give yourself permission from that. But also hitting a particular part of my life now. So a few years ago, so 2015 the first ever presentation I did was an Aboriginal mental health conference and suicide prevention. It was a room like this. There were 12 people turned up, and I'm like, going, “”oh, cool, we’ve got a cricket team. And then six actually went, “Oh, we're in the wrong room”. And I said, “Okay, we're down to basketball now”. And I've gone from that to a few weeks ago, and I was invited to speak at the National Union of Students disability conference out of Western Sydney, and there was a room of 80 disability service officers. And we had two days, and I could just see I could go. There has been a past, there is a present, but those people will carry our future. And I said that's that's all we can have faith in, that we speak with integrity, we don't compromise in our values, but we just encourage those and lift up others and the voices of others that they can keep going on.  

CHRISTINA RYAN: Yeah, absolutely. Thank you. Scott. 

DR SCOTT AVERY: Marrangbu. Thankyou.

APPLAUSE 

NATASHA MITCHELL:  What a fantastic hour. And a little reminder there from Scott that leaders also need self-care on this UN International Day of People with a Disability. 

Thanks to the deaf defying Dr Scott Avery. He is Professor of Indigenous Disability and Wellbeing at the University of Technology Sydney.  

And thanks also to Christina Ryan. She’s founder and chief executive of the social enterprise, the Disability Leadership Institute, which organised today’s oration. And Christina is an ACT Australian of the year nominee for 2025. Congratulations. 

And I’m reminded of the massive worldwide deaf pride movement, and I’ll link to some radio programs I’ve made over the years charting its important evolution and growth of that movement around deafness and pride. Look for those in today’s show notes on the Big Ideas website.  

I’m Natasha Mitchell find all our BIG IDEAS episodes on the ABC Listen ... hit follow so you don’t miss an episode that really connect with you. So many big thinkers, so many fantastic live events. I’ll catch you next time. Bye.