Culture Is Inclusion

This was the second  session at the Advocacy Sector Conversations forum held at the Queen Victoria Women’s Centre on 14 February 2019.


Overview

‘Culture is Inclusion’ is the first book of its kind about the experiences of Aboriginal and Torres Strait Islander people with disability across Australia.  It presents unique and valuable data gathered over a four year period of community-led research and includes both statistics and narrative/testimony. Scott Avery from First Peoples Disability Network presents the key findings from this research.

 

 

Links to resources mentioned in this session:

 

Audio and transcript

MELISSA HALE, DARU COORDINATOR:
Culture is Inclusion is described as a remarkable and compelling story of Aboriginal and Torres Strait Islander people with disability presented in a unique way that combines traditional research methods and the concept of yarning.  Please enjoy and welcome Scott.

SCOTT AVERY, FIRST PEOPLES DISABILITY NETWORK:
[0:00:27:3 – inaudible language], which is welcome in my native language of Gathang.  My name is Scott Avery.  I’m an Aboriginal person.  The Aboriginal nation where I’m from is the Warrimay Nation.  We dig in rivers a lot, people know the Manning River round Taree.  That’s where my mob is from in New South Wales.  If you’re driving from Sydney to Brisbane, it’s a couple of hours north so that’s where my ancestral homeland is.

I’m also profoundly deaf.  I tell people this because often when I go to some of the remote communities I wear Cochlear implants and a hearing aid here so I’ve got to point them out.  I go these are Cochlear implants and I do that because sometimes they’re a bit standoffish and they go what’s that because in many cases people won’t have seen something like that.  It hasn’t penetrated this kind of help, knowledge in the communities.  I tell them that and they go oh god thank god for that you’re deaf, I thought you’re a copper.

[LAUGHTER]

I forget that.  They say is this your mobile phone device and I say no it’s actually Bionic Man.  The organisation I’m with, I’ll just talk about the organisation I’m with for a moment.  It’s called the First Peoples Disability Network.  We’re a non-Government organisation.  We’re not affiliated with any Government agency, we’re not affiliated with any University.  We are an organisation that is owned controlled run by Aboriginal and Torres Strait Islander people with disability.

Everyone on our board has some experience or exposure to either living with a disability themselves or a direct connection to a family member.  We’re very strong on that lived experience.  As I said I’m an Aboriginal person, I’m deaf myself.  We carry a lot of what’s happening in our life into the work that we do.

We’re quite a small organisation.  There’s about seven of us.  We would like to say we’re national but we do cover a lot of issues.  I say a lot of our work is inch thick miles wide.

If you’re an Aboriginal person and you’re a person with disability the buzzword at the moment is intersectionality but it does explain that if you’re an Aboriginal person and a person with disability, sort of the social inequality and the disadvantage you experience.  Sometimes it’s really hard to put that into words until you see it.  We’ve done our best to write that up and as Melissa mentioned here’s a book that we produced on it.

I’m a researcher.  What I’ve done is when I was starting this a number of years ago I’m sitting in a policy role in a non-Government organisation, I’m seeing all that’s been written about Aboriginal people with disability and it just did not gel with what people are telling me on the phone, when they come into our office.  I was having a look at who was writing it and what was being written about it and a lot of it was being written about it through the perspective of a service provider often who weren’t Aboriginal and often sat within that medical model.

What they were talking about it wasn’t wrong but it fell so far short at explaining what was really going on in our communities.  We thought we’ll just take this and run with it.  That’s what I’m going to be talking about today.  It’s about how we’ve used our research not just to find out what’s going on and being able to explain what’s going on but we wanted to do it to change the narrative.  One of the narratives we want to change it through is to get the focus back on inclusion.

I don’t know if you can see this, it’s a bit light.  I’ve got it here it’s a piece of artwork that we’ve created.  If you want to understand disability and inclusion in Aboriginal and Torres Strait Islander communities you’ve actually got to cast your mind back about 25,000 years.  Out in Western New South Wales there’s an archaeological site and it’s said to be one of the largest archaeological site with footprints in the mud.  Within those set of footprints there’s a single white line footprint so it goes right footprint, right footprint, right footprint and there is no corresponding left footprint.

Off course the Western kind of science is going that’s really really odd what’s happened here and then someone thought to ask the Aboriginal elders who were the custodians of that land and said well that’s a one legged man on a hunt and he’s hunting with the clan.  They measured it and said he is someone moving in pace.  I thought we in our communities we say there is no word for disability in our language and that’s in many a case it’s kind of like a different belief system that we have.

We talk about this story as being symbolic of this concept of inclusion.  Here’s a one legged man just participating, he’s on the hunt just doing what everyone else does.  But unfortunately what happened is that got disrupted about 250 years ago.  250 years ago when this white fellas come to this country and we talk a lot about colonisation and many Aboriginal scholars will do a better job than I on talking about what happened in terms of land dispossession and some of the massacres that take place but one of the things I want to draw attention to is not only that there was a concept that got imported at the same time.

That concept was disability.  Up until that, people had sort of in our communities and it also happened before the industrial revolution is this notion of people have responsibility.  They might be called cripple, they use language like that but they had responsibility, had roles in society.  With the industrial revolution, what happened people essentially got commodified.  They were like raw materials in a production process.  If you didn’t fit the standard process you were discarded.

That’s the actual origin of the word disability.  That was the concept that got imported to Australia at the same time.  If you’re an Aboriginal what we say in here it’s saying if you’re an Aboriginal person and a person with disability you’re kind of dispossessed from your land and you’re dispossessed from your body.  When I look at this sort of social history of Australia, you just don’t see this story of this happening.  We thought this is sort of the missing chapter in Australia’s social history that we wanted to piece together.

How do we do it?  Okay so I’m policy guys I spend a lot of my time in Canberra.  I escaped this morning to come and speak to you today.  We have our priorities.  A lot of the work that I do is saying well when I was in a community organisation I could hear these stories, very personal stories.  We kind of knew this inequality was happening, we could see it, we could hear it we just kind of couldn’t prove it in a way that people would acknowledge and accept it.

What we did we thought, hang on what I’m really talking about here is power and how power is used and where people sit in the power hierarchy.  We’re going how do we actually alter and invert some of these power structures that are actually placing people, our mobs at the bottom of society and othering them.

We thought we needed to have an overall program.

First thing is it needs to be our voices.  We wanted to promote and elevate our voices because we were not seeing that in public discourse, in policy, anywhere.  It was like we did not exist.  We also knew, so what we did we wanted to go and talk to people.  Our research Question was 1; What is your story, tell us your story, we want to hear your story.  That was it.  We encouraged people to tell their story and then we would work out what happened from there.

That was it and we called that Testimony.  We do that, we talk about that because the notion of testimony.  When you say story you kind of think it’s someone’s story it’s one persons or it might be the notion of testimony goes to this is a truth telling exercise.  It’s the truth.  It’s a truth that hasn’t been revealed yet.  If you give testimony in a court it’s evidence that’s how we treated it and we gave the people telling that story that respect.

The statistical data, we said okay we knew we were very pragmatic and we said what we needed to do is we needed to get statistical data.  We could see all this social inequality but that’s a community, we just kind of want to go how big is this problem.  Even as something as simple as how many Aboriginal people with disability live in Australia, something as fundamental as that which you would imagine would drive a lot of – how many service providers, no one had actually done that work.  No Government agency had done it.  You can go to the NDIA they will not tell you.  This was work that we knew we had to drive.

The third piece that we did was what we called ‘yarning’ pieces.  When you start putting data whether it’s testimonial data whether it’s numbers and you start putting them into themes one of the things that you risk doing is losing the character of the story, the humanity of the story.  We wanted to keep that humanity and how all of these issues come together in the life of one person, just to redo that that’s kind of what we’re talking about.  We put it as a research program so we could publish, we could teach people, that’s the legacy that we wanted to do.  We wanted people to hear this story and thank you to Melissa for actually inviting me here today to share it.

I talked about the power structures.  We wanted to invert them.  Now as a researcher, I have a lot to do with many many Universities could be twenty or thirty of them that I can think of.  What they would normally do was they’ll come to me and say here’s a research project I want to do, but I need your advice, will you be on my advisory committee.  We will hold the money, you can give us advice, we will decide whether we use it or not but we would really like you to be part of that.

A lot of Governments do this, Government agencies tend to do this.  They go we’re going to have an investigation or an enquiry and we would like you to give testimony and evidence to us but if you’re going to make us uncomfortable we might talk about things like inequality, we might put that out there on that thing.  Again, the power was with the person whose commissioning it.  If we wanted to empower our community and the people who were in it we had to invert those power structures.

What we did is our community is leading this program.  We said, we’ll just do it ourselves.  My organisation the First People Disability Network, we say we’re the research host, we’re the host.  We do have relationships with other people.  There’s a fantastic number of academic and research supporters but their relationship is different.  Their relationship is to us what it used to be to them.  They’re our advisors.  It’s our values, our belief, it’s our understanding of inclusion that we want so that’s what’s driving the show.  If they give us advice we can then go thank you for that that’s wonderful this is where it’s incompatible, we will make the decision in favour of our values and systems.  That’s what we did.

We also had technical advisors and I think that’s where I want to give a big wrap to the Australian Bureau of Statistics, which is the unusual suspect in our story. A lot of this is data and people say there is not a lot of data in this.  It’s actually a different message I want to send to you.  There is data there but it’s often not configured and structured in a way to support your cause.  There’s an art you have to do in reconfiguring it in a way that would actually support your argument.

We did that with the Australian Bureau of Statistics which is very unusual for us for a very small not for profit Aboriginal organisation to engage with them.  They’ve been a fantastic supporter in getting data that was there but buried and hidden in databases and putting it in our hands that we could do it for an agenda that we wanted to peruse.  That’s our model.  I’m the person sitting in the middle.  It’s upsets the Universities a bit but I tell them I answer to FPDN not the University but that’s just how it’s worked.

I spoke a bit about intersectionality.  Again, I want to sort of reinforce intersectionality is not I happen to be Aboriginal and I happen to have a disability.  It’s not that kind of thing.  Intersectionality it explains power relationships, it helps you understand power relationships within society.  It’s just like a power hierarchy so you might not be Aboriginal but what happens if you’re Aboriginal and a person with disability, if you’re either of those you’re disempowered relative to a dominant power structure if you like.

If you then combine the two or intersect the two the relative power that you have and there’s a lot of theoretical work if you’re really interested intersectionality.  Go to the source, the person you need to read is Kimberle Crenshaw, read her work and it really helps you understand this in terms of power.  We’re saying if you understand power you’re really understanding this.  The word empowerment is used as a cliché.  Understand what you’re really trying to do is disrupt power structures.

Intersectionality happens across the life trajectory of an Aboriginal person with disability.  This is what I call a life trajectory; it starts at a very young age.  If you’re an Aboriginal person you might be born into an environment where there is – a lot of public infrastructure and utilities that we have in metropolitan areas, we kind of take it for granted.  There are people in Australia that don’t have running water, clean access to clean water.  They live in overcrowded housing.  They live where there is no footpaths.  That’s all we’re talking about.

If you’re a child born in that there is a correlation between if you have a mismanaged disability there is an unavoidable impact that you could actually have if you’re in that environment.  Things like low birth weight and all those kind of things are related to living in that area.  What happens is you then couple it with, if you’re an Aboriginal child and we know that Aboriginal children are ten times more likely than other children to be removed from their family and community.  We know that, it’s fourteen times if you’ve got a disability as well.

If you knew that, then what happens you get placed in an out of home care system.  We talk to carers and foster parents and they say our foster child can’t get a lot of the tests because the service providers tell us that if you’re an unstable family environment you get false readings and all that.  If you’re an Aboriginal child, you have an undiagnosed disability you are now through to your schooling years and you’ve fallen through the cracks.

Then we get to schooling with the thing we call the Bad Black Kid Syndrome.  This is where presentations of someone’s disability is kind of misconstrued as delinquent behaviour.  They go it’s not a case of you might struggle to hear or you might have a cognitive impairment you’re cast as a Bad Black Kid.  It’s almost this punitive model of education starts and then that carries forward which means they struggle to get a job.

I call this a ‘matriculation pathway into prison’ because so many Aboriginal – the profile of juvenile detention, its Aboriginal people with cognitive and hearing and trauma, that’s the profile.  Now this might be very confronting to people but again if you understand it’s not inherent in the person you can see this trajectory and you can kind of go there are pivot points where we can alter that trajectory.  That’s where we kind of get to.  That’s where we’ve got to get our advocacy efforts when we talk about systemic advocacy.  We’ve got to move it from needing to prove this into actually how can we alter the trajectory.

The pattern that set the statistical data for the pattern and I’ve just got a chart here and this relates to access health care.  The question was do you have a problem accessing health services.   The general population on the far left that’s a very low bar and what happens is you move across.  If you’re a person with disability and column three is if you’re an Aboriginal person without a disability, it goes up.  The inequality you face goes up.  This is all real data.  You add the two together so you’re an Aboriginal person with some disability that’s not severe and profound it goes up again.  The inequality you face goes up.

If you add severity of disability, so if you’re an Aboriginal person with disability that is severe and profound the inequality or the barriers you face go up.  You’re really talking about understanding this concept of now we can start getting and this is what the data is showing, it’s not just the Aboriginal population this concept is applied to.  You may be involved with young children that experience trauma kind of this notion of there are vulnerable population groups that you will deal with you just can’t apply one size fits all.  Get to know the back-story because the data is saying they will all have barriers.  If you pitch it at the mid-point, they won’t get access to some of the things that you’re trying to do.

I’m just going to talk a bit about a discussion we had earlier with Mary Ann, I think it was talking about the interface of structure versus personal agency.  A bit of techo term but the National Disability Insurance Scheme, it’s all about personal independence so I give you something you get personal choice.  Very focused on that.  Kind of doesn’t happen outside with, well in what environment are you placing that?

I’ve got a few examples here to draw out.  You actually need to understand the environment where you’re putting in personalised care to make it effective.  I travel a lot to remote communities, around Aboriginal communities.  I’m talking about if you drive from Alice Springs to Tennant Creek there is this loop.  You go down this road it’s an 80-kilometre road and 80 kilometres down the road, the settlement pops up.  That’s the sort of place we’re talking about here.

This community, I took the photo with the permission of the community I should point.  This house was built under remote access housing scheme.  Someone has gone in and sort of said there is no housing in remote communities we better build it.  There is no consultation with the family, no consultation or consideration about disability.  I’m just going to walk over here for a bit.  See that bit there, that’s a ledge that’s about that high.  I said what happens when the mob with disability come over they said we have to lift them over that ledge.  Here’s something built with one intention, yep we’ve got a structural issue don’t have the personal thinking and that’s a problem.

I’m going to have a reverse scenario now.  This is a wheelchair that we saw just down the road a bit actually.  This wheelchair that you would have it’s in a metropolitan area its very light, fold up, you can chuck it in the back of your boot off you go.  You take that same wheelchair and put it into a remote environment the combination of the extreme heat and the lack of footpaths you see if you have a look there, the rubber wheels have melted off.  That had been discarded and again we’re kind of going where’s this fit for purpose.  This is something that we’re going you really need to think about the environment that you’re placing, your support into.

I will get onto this when I talk about mental health in a few moments.  One of the things that I did see and we hear a lot about we’re going to build trust with people, we want to engage and all this kind of thing, this is something I saw in my research as well.  It was like this pathway and it started with people would go I kind of expect I’m going to be discriminated against or I fear it, it’s intuitive to me particularly if I’m Aboriginal; I cop racism and as a person with disability I might get ableism and sometimes they come together.  That was something that people were voluntarily talking about.

It started off with that but then what happened is this intuitive fear people sort of said hang on this is starting to happen to me.  I move from this intuitive fear to actually you know what, this is a rational understanding of I’m going to be discriminated against.  What happens is they go you know what and this is a very rational response to that; I’m going to disengage, I’m going to avoid participating in scenarios, in situations where I might be discriminated kind of to protect myself.

I’ve called that ‘apprehended discrimination’ because it’s this notion of apprehension, which has basically said, I’m getting more exposure to this my fear, which started out, has become real.  There is a few examples but I will focus on one due to time.  One case that I saw was in the employment area.  You can almost do your own social experiment here and have a look at the visibility of people in employment.  You go to Westfield you see all these shops and it just doesn’t have the visibility of people with disability.

There was one young Torres Strait Islander girl I spoke with and she spoke about her experiences.  She’s Torres Strait Islander background, she is cerebral palsy, she’s doing two degrees at Queensland University.  When I spoke to her she’s going I can’t get a job like my friends can get a job the Westfield kind of jobs, I think she meant Katies and Sussans.  She said I would write to them, she is beautifully spoken on the phone, writes in.  They say come in and as soon as you come in, they say “you don’t fit the brand.”

That’s the language and the words that they used this notion of you don’t have value to us.  I think these guys need a major rebrand if that’s the case.  That’s what I heard.  I heard that story consistently.  I heard it from an Aboriginal deaf man.  He said my dream job I just want to be a steward on an airline.  He actually paid people to help him with an application.  He applied for the airlines, they said sorry we don’t hire deaf people.  That was it; his life dream just got shattered like that.  It’s the arrogance I found really personally confronting here the arrogant dismissal of it that really gets under you.

I was presenting at a forum like this to an Aboriginal community organisation with the vision impaired.  Someone come up to me afterwards and said so you know those jobs that says you’re a stake holder management or a customer service person, a lot of them have must have drivers licence even though it’s completely unrelated to that job.  He said I can get myself there why does it have this as a standard requirement.  He goes I don’t even bother applying to that now because I know they can use that to discriminate against me.

This is this notion of you can have the best systems in the world and that, but unless you understand the back story if you want to build in trust with people, this is the kind of thing we actually need to flip round from apprehended discrimination, “I expect to be discriminated against” into, flip it to “I expect to be included.”

I will quickly talk about this for people who are doing work within Aboriginal communities, particularly if you’re not directly or haven’t had a lot of experiences.  It’s just the understanding of if you’re talking about children and the connection to child removal policies.  Really know that stuff and how that can be a lightning rod or a trigger point for so much trauma in people.  We’re not surprised, but we are surprised how unsurprised people come into our communities and don’t understand how traumatic it might be to have a child taken away from you.  If you’re in that space the notion of to be trauma reformed is to think it through.  I put that there but I just flag it.

Again, the data that we had 60,000 Aboriginal Torres Strait Islander people with disability – the rule of thumb is if you’re an Aboriginal person and you have disability, the inequality in every single indicator we looked at, every single indicator with one exception, I’ll get to it – is twice that of other Aboriginal people.  That’s other Aboriginal people.  Something like education, which is a story that the Prime Minister talked about today in Close the Gap, he focused on education.

That’s the rule of thumb, Aboriginal disability twice that of Aboriginal people.  If you only do culturally inclusive education and don’t get the disability part the best-case scenario is you will get it half way?  That’s the significance of this.  This, what we’re talking about, when you’re exposed to discrimination and you’re exposed to inequality the impact that has on your mental health.  I hope you can come through me on this journey because it does change tack in a few moments.  I know it can be very confronting for people.

This is the education, the Prime Minister spoke about education today for Aboriginal children.  Proposal is that we wave HEX for new graduates I guess and have them teach in remote communities.  This is saying there’s another story to it and there’s disability.  That’s the indicators of children.  It’s so important because you’re carrying it through.  Where this sits in the life trajectory is so vital.

I’ll move through this, change of tack now.  This was a discussion that I had with an Aboriginal man in a remote community.  The first part of the discussion was he was telling a lot about the health services he was experiencing in some of these places.  About twenty minutes in, he lifted up his trouser leg like this and he goes I had an operation and he showed me.  I could see this pin sticking out of his knee, it was about that long.  It reminded me of those mountains if you go in the outback that pop up.  I’m kind of going okay, how long ago was this and what was the story.

He progressively revealed during it that he had the knee operation he’d gone to Alice Springs which I figured out was about a six or seven hour ride on his own.  I said who came back with you well I’m on my own.  I said where are you staying now and he goes I’m sleeping rough which is basically homelessness.  I’m kind of going he’s an elderly Aboriginal man he’s just been discharged from an Australian health care system into homelessness after a major knee operation.  I’m kind of going okay why don’t we know this stuff.  He was telling me he has to pick up a bucket of water to get fresh water from a camping ground.  He has to go 500 metres with a bucket of water.  I said are you okay doing that.

These are the things that we have but there was a turning point.  This is where we can actually move from thinking about the inequality to thinking about inclusion because then what he started to tell me about – I said what happens if you get in trouble mate and he goes well we all look out for each other in our community, some of us have got mobile phones and we all stick together.  Yes, there is lots of people with disability in these town camps but we all stick together and look out for each other.

I sort of said what’s your future like and he goes look I don’t have a house and my challenge is I’ve got to keep my food off the ground, the dogs don’t get it and down below so the birds don’t get it.  I want a house, I want dignity, I want respect.  When you say a house, he said I want a home, I want to go home.  I thought that’s not too much for a nation of ours to provide but it’s that notion of we’re a community.  That twigged it moved from this story of inequality into despite all this inequality we’re surviving this.

There was one Aboriginal elder lady that I met with and again she was in a motorised wheelchair when I met her, she’s an amputee.  A lot of these places you go to just the diabetes and that there is a lot of amputees there.

Hysterical story.  She sat next to her husband and goes we go hunting together.  I thought how she spoke about that, we go hunting together kind of moved from beyond the physical task to one of a spiritual connection to someone.  I thought wow.  She would say I sit in the car and I tell my husband what to do because he’s pretty hopeless and he doesn’t know what to look for so I have to yell out the window but we go hunting together.

I started hearing more of that and I went okay, despite this inequality despite this disadvantage despite what we would in Western world call disability, there’s this culture of inclusion that’s sitting there.  So we started listening to those narratives, that story and I thought we now have a line of sight between the one-legged Mongo man and what we’re hearing today.

I’m thinking okay, so how we provide services a National Disability Insurance Scheme, what’s the go on that?  We have to make ourselves disabled.  In order to get services, in order to access services we have to disable ourselves.  I’m kind of going let’s flip that round.  As we’ve inverted everything else round let’s get the focus back onto inclusion let’s talk about inclusion.  Let’s start with that.  That’s the belief system upon which we can now build our disability services when we go into our classroom.

That’s our belief system that our children that are to be included whether they’re Aboriginal, whether they’re from an ethnic background, whether they’re an Asylum seeker.  That’s the philosophy we do.  I thought if we can change that philosophy, some of these things will start developing in a way.

I’ve got a few more here but I just want to open up for a bit of discussion as well.  As I said a lot of this, I’ve talked about and can gage from people it can be easy to sit quiet in the room, how confronting this might be to people who are very socially conscious and may not have had an opportunity yet.  I’m very very mindful of that but this is kind of your permission slip if you like.  This thing here is your permission slip to go you know what, when you see discrimination, when you see ableism, if you see racism, if you see people who should be getting a fair go this is your permission slip to say actually no thank you not on my watch.

It actually requires this very grounded movement that happens at people who are providing services to people or supporting people.  This is where this kind of thing needs to change.  We need to lead it here in this room.  As confronting, as it is to hear this message, I want to share a story of hope.  Again, it does start quite traumatic but it does shift.  It’s the pathway we have to shift; we have to heal people through.

The story, I met a young Aboriginal man he lived in a housing complex probably the size of this and maybe 30ish people living in a complex.  A very very confined situation.  The young man said I go to the psychologist once a week as I’m supposed to.  He kind of referenced to an employment plan or support plan, he’s supposed to do that so I go.  He sat okay in the room but he said the moment I leave people wind down the window and yell out a racial name at me.  In all that, the thing has been undone straight away.

It’s kind of like the mental health version of that busted wheelchair.  If you put clinical psychology in a hostile environment like that, you’ve got your melted wheels.  It’s that kind of metaphor.  I was speaking to him and the community had a lot a lot of trauma.  Just really affected.  It’s almost contagious because it was such a small space.  Towards the end, he goes you know what, there is something stronger here and he pointed to his heart and said I’ve just got to get there.

As difficult as it is to get your head around this it’s the acceptance that some of these things are happening in our country.  But how do we care a philosophy of care that makes that person get to where he wants to?  I always close off to say for whatever reason you came here today everyone one of you have actually followed a single right footstep to hear this.

Thank you again.  I hope you take this presentation and go away and sort of think okay what does this actually mean for me and what can I do to be much more inclusive, carry this philosophy and walk the floor for inclusion.

I’m going to hand it over now to the microphone and if people want to ask questions or provide their personal reaction to what they’ve heard, thank you.

MELISSA HALE:
Thank you.

GREG CROSS:
Hi, Greg Cross is my name.  Just to support Scott’s comments for those who don’t know the trauma for a child being removed from community, the procedure is Territory families fly in unannounced hire a car drive to the house pick up the child and leave and the whole thing takes no more than 15 minutes.  There is no warning, the police is not involved, no community members are involved.  A lot of people have to endure this.  I’ve seen it firsthand too many times unfortunately.

On the other side, I have been to places like [? Omnapely and I’ve seen people in wheelchairs and in hot weather, which is quite rampant up there, the families take them out and put them in the creek so they’re cooling down so the wheelchairs get new bearings on a regular basis.  This is quite good.  Thank you for your comments.

MELISSA HALE:
Any other questions or comments?

QUESTION:
Firstly, I just want to say thank you.  I just wondered I don’t know whether you touched on this and I missed it, but I just wondered whether there was a word for disability in terms of in the Indigenous language?

SCOTT AVERY:
[inaudible, not speaking into mic]

QUESTION:
Okay and then I also just wondered, before the white invasion, what the perceptions of disability was in Indigenous culture?

SCOTT AVERY:
The first question was is there a word for disability in Aboriginal languages.  The answer is no.  There’s not this overarching concept of disability.  There are some Aboriginal language’s that contain words around impairment.  There is a paper, and it’s actually referenced in my book, the person’s name is Ariotti if you want to look him up and you’re interested in that.  That was a piece, if you actually went into the APY lands and you looked about how people spoke about people with physical diversity that kind of stuff and they didn’t talk about it in a pejorative way.

Where I work, it’s in Gutuga land so people would say to me oh you’re a bit ‘ding ding’ which roughly translates to dead ear.  But it’s not used in a pejorative sense to kind of say well you’re deaf we need to fix you it’s just a nod in the wing to kind of go look you just need to acknowledge the fact he’s not going to hear you unless you’re looking at him.

Again, it’s that belief system that is there and it’s a different belief system.  I saw it not just in Aboriginal culture but you see it in Maori culture.  I’ve read things about Navajo culture, the word they use is ‘Honzo’.

There’s a philosophy.  It’s a philosophy going we just kind of take all comers.  Even that like I said in the Western culture that we know now that was actually, what it was like before the industrial revolution.  It’s the industrial revolution that kind of went we’re going to treat people like commodities and they started labelling people.  If you couldn’t participate in the production process, you are ‘not abled’.  That’s the origin of that word.

Actually,, the concept of disability as of its own is quite a new concept in many ways.  What happens is then the orthopaedic movement came along and said well those who are discarded we can now fix some of you so it went from a medical model which is about you’re broken we can fix you to a social mode that says the environment is broken we can accommodate you.  The cultural model of inclusion has said mate, just come and sit with us.  It’s just a philosophy of difference.

That’s the culture; it’s not about the linguistics.  That’s why they talk about words for snow and that it’s what you see.  We don’t see it that’s why there’s no words.  It’s very difficult for us because we know this world we’re in now requires us to negotiate on these terms.  This is what I’m saying the NDIS forces us to disable ourselves because it’s actually against our culture and our belief system.  I hope I got there in the end.

MELISSA HALE:
Any other questions?

QUESTION:
Hi, my question follows on from that directly.  What do you actually do to help people walk that balance between inclusion and having to disable themselves so they can access what they’re entitled to?

SCOTT AVERY:
So the question was what do we actually do to support the people.  Well I suppose you’re in a dilemma at the moment it’s kind of like we’ve got the worst of both worlds in that we’re struggling to get the access to the supports but we’ve got the labels as well, the stigmatising labels.

I think the path that at least I’ve chosen to do with this research is to bust through some of those labels.  It’s how we talk about people and just being alert to particularly the degree of ableism.  That’s what people were saying it chipped away at them it just chipped chipped chipped.  The nature of racism and ableism people spoke about them separately and also together as well.

Racism people are saying I would be kind of attacked, real nastiness, people would call me really nasty names they could feel the anger.  With the disability, it’s like you’re not in the room.  People were telling me, one person I remember now, he said I go to coffee shops and the waiter at the restaurant would talk to the people around me, what would this person want.  That constantly dehumanised.

You see it even in language.  I know the Federal Election is coming up.  I’m getting really worried because I’m deaf and the amount of politicians who people don’t agree with are going are you deaf or something.  It’s just this culture of dehumanising and it just chips away at you.  Sometimes it really gets you.  That’s what was coming through.

This is what we want to talk about is changing the philosophy to inclusion and supporting that healing process but acknowledging that happens is the first part of it.  A lot of people carry what I would call sub conscious bias.  Again, that doctor who discharged that Aboriginal man into homelessness.  I can imagine the scenario there might be three or four people, we need a bed, hang on no one is going to find out about that person so we can discharge them.  It’s that bias.  They can probably justify it under a clinical decision but that’s not equity and that’s not care.

By raising these saying actually, we do know and in the book, I say subconscious bias, the first thing you need to do is raise to conscious.  You’ve got to remove that defensive unconscious bias.  That’s how I present this and talk and I think that’s going to set us on a better frame to answering some of those questions about well what’s the right kind of service.  We start from the right assumption.  That’s how we’ve approached this.  That’s why we’re doing what we do in the way we do because if we can think inclusion and talk inclusion and create that environment for inclusion then everything will follow from that.

MELISSA HALE:
I have a quick question for you Scott.  There is a lot of work happening around the treaty and closing the gap and all those reports on a Government level, how do you think that will work towards creating more of an inclusive culture?

SCOTT AVERY:
So if I got it right the question was around close the gap and how you’re doing that in inclusive culture.  I think this is some of the battle we’re having.  In Australia you can be one thing, you can be Aboriginal or a person with disability.  This is how we set our policy framework up.  You have the National Disability Scheme and we’re going how does this fit within Aboriginal communities – oh, no, we’ve got the scheme build it and they will come.

The constant battle we’re having with close the gap it’s well the issues for Aboriginal communities are that great, when we talk about this it’s 25 years within our community, it’s like you’re on the lowest strung of the service ladder.  It’s like once we fix housing, once we fix education, once we fix employment, we’ll eventually get to disability.  The battle we kind of have, you’ve kind of got to learn to walk and chew gum at the same time.

That’s the nature of intersectionality.  It kind of goes well we’ll solve this for most people and then we will get to you.  The problem with that is you’re kind of creating because you never actually do get to the most vulnerable people within the marginalised communities, you never get there.  You haven’t in the last 25 years since we started talking about that.  What you’re essentially doing is creating almost like an underclass.

You’re sleep walking into this underclass where you never get to the most vulnerable people.  Our argument is flip it around.  If we can solve problems for our most vulnerable then you solve it for most others as well.  If you can get an education program that is both inclusive of culture and of disability, you get both the other ways as well.

It’s hard, it’s complex.  I don’t discount that but we got to that book and where we are by one research question, what is your story.  That is as complex as we needed to make it.  We can often make our systems so complex and impenetrable.  Get back to what the fundamental purpose is and we’re actually providing these systems to support people who need it.  Get back to that, break down some of this unnecessary complexity.

We haven’t won that battle.  That’s why I’m here and not in Canberra today for close the gap, we’re just not on the radar.  We need people to say kind of get it on the radar please.

SIMON ANDERSON:
Hello, my name is Simon and I work for, can you hear through the microphone?

SCOTT AVERY:
I have to lip read so if you mind.

SIMON ANDERSON:
Yeah, it’s fine if you look at the interpreter that’s okay I don’t mind.  I’m used to doing this in using an interpreter.  I work for Deaf Victoria as an advocacy officer and for hard of hearing people in Victoria one issue that I have noticed is Aboriginal people being included in the conversation.  I’ve worked for the service for about a year and maybe more, what I’ve noticed and what I’m extremely aware of is that I don’t represent, I’m not Aboriginal myself, I don’t have a lot of knowledge and expertise of their communities.

I understand there may be deaf people within those communities but if they see me as a white person, representing Deaf Victoria they might not feel encouraged to engage with our organisation.  I accept all of this but at the same time for all of Victorians; we provide a service whether they’re from any cultural background.  This is where we stand at the moment.  I don’t know about other advocacy services in this room.  Maybe it would be of a similar philosophy.

My question is I would like to say what I’m wondering is how can we be allies with the first peoples communities?  How can we develop that engagement so that we can have an allegiance with them without interrupting their cultural norms, without being invasive, without excluding them?  It’s not saying that we’re not going to provide service.  We would like to provide service, engage and partner with them but how do we make that happen?

SCOTT AVERY:
Thank you for the question, apologies for having to lip-read.  It’s quite fascinating you actually brought up that particular issue because within the cohort, I spoke to 47 Aboriginal people as part of my research.  The first group, the very first group that said can we please be involved were and they’re called the Deadly Deaf Mob.  They are deaf Aboriginal people and they contacted me because they knew me anyway.  I actually don’t sign but they know me anyway.

It was a social network, I came to something like this I said I’m doing some research this is what it’s going to look like and they said we want to be first.  They’re very strong.  The group is called The Deadly Deaf Mob and I can put you in touch with these people as well.  I actually wrote about it in the book because again you will find this, there was eleven of them, eleven people.

We did them all in Auslan.  All interviews were done in Auslan we had the video running and we had a recorder so we could get the text and we transcribed that.  I’m remembering once in South Australia an interpreter got sick at the very very last moment so we had to do it via Skype and we had one interpreter in Sydney one interpreter in Brisbane next to the computer.  The reason I tell that story it’s kind of if you value inclusion you just make stuff happen.  This is just kind of bumps in the road.  But they tell and some of their stories, again this is where it comes to culture.  Some of their story is a disability story.

On that regard, you can talk to those issues.  Some of it an Aboriginal story.  You’re not able to talk to those issues but you can talk with people about it.  Sometimes and this is where the kind of nuance, understanding, sometimes it’s because I’m Aboriginal and I’m deaf that’s the problem the two things coming together.

One of the particular issues of racism and ableism coming together is when people have prejudicial stereotypes about Aboriginal people drinking but someone whose deaf might not, the way they speak and they go you’re not deaf you’re a drunk Aboriginal.  We heard that story that’s how these things intersect in the life.

In terms of your question, I could put you in touch with some of those people if you would like to get their details, they will speak with you.  Again, let them tell their story first because they will have issues.  I think this is a message that understanding what your lame is, where your lame is, is it a disability lame is it an Aboriginal lame, our lame is that intersection.

There is things in the Aboriginal communities I don’t talk about.  I don’t talk about land rights, I don’t talk about that kind of stuff.  I talk about what is it like for an Aboriginal person with disability.  That’s my lame and respecting that but again through the power of storytelling and you can build trust and you might need to be patient because some of these people might have had bad experiences in the past.  But if you come to the room with respect as I see you would do then you will have that relationship.

We’re very relational people.  You build relations with others.  We don’t care about fancy titles all that kind of stuff.  You could be Professor this or Professor that it doesn’t matter.  We have a relationship with you and we get that respect, we will spot it.

MELISSA HALE:
We’ve got time for one last question.

QUESTION:
Mine was just is it possible to get a copy of your slides from the presentation today?

SCOTT AVERY:
I can arrange that.

MELISSA HALE:
Everything we see today, the slides and everything will be available on our website later.

SCOTT AVERY:
I just want to give if you don’t mind a final plug for our book before I sign off.  This is our book, as I said we’re a non-Government organisation but we’ve produced this.  It’s a beautiful book and it’s got a lot of the stories in there.  We kind of designed it as a bit of a thinking person’s coffee table book.  If you can have a look at some of the images that we have in there they’re kind of high gloss so it’s designed at a particular market.

If people want to go to our website www.fpdn.org.au they might want it.  If you work for a University, they might put it in their library.  I think there is about eight and just kind of go why haven’t you got it or you might be a community library.  We’re a non-Government organisation.  We had to produce this ourselves.  We didn’t work through a publisher we just did it ourselves.  I should point out its $176.00 so that might be awkward for people but we did want to get a high quality publication that really can provoke some of these discussions.

Thank you very much.

MELISSA HALE:
Thank you very much.  I think we all appreciated this is a really amazing book and I really encourage you to buy the book.  Thank you for making the time to come and speak to us today.

SCOTT AVERY:
My pleasure.

Author:
DARU

Date published:
Thu 14th Feb, 2019