00:00:00 Producer Anh
Rolling and whenever you're ready.
00:00:02 Susan Wood
Hi, Alastair.
Usually, what we do, is I get you to do an introduction of yourself.
00:00:07 Alastair McEwin
Oh, well, how do I introduce myself, Susan?
00:00:10 Alastair
I'm Alistair McEwin. I was born profoundly deaf and I've had a long history and career in working in disability rights.
00:00:18 Alastair
And I'm also a proud Port Adelaide AFL football team fan.
00:00:23 Susan
How's the team going?
00:00:25 Alastair
Not as well as I would like.
00:00:27 Alastair
Are you an AFL?
00:00:28 Susan
No [laugher from Susan and Alastair] [Upbeat music fades in]
00:00:30 Susan
You're listening to episode 60 of Have the Nerve. My name is Susan Wood, and on this episode, you will hear from disability advocate, Professor of Practice and Disability at the University of New South Wales, Royal Commissioner with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, and former Australian Disability Discrimination Commissioner, Professor Alastair McEwin.
We talk about Alastair's extensive career and his life story, about growing up with disability and the significance of inclusivity in education. [music fades out]
00:01:05 Susan
Thank you very much for being on the podcast. I really appreciate your time and taking time out for me this morning.
00:01:13 Susan
So.. um [pauses] see what I did there?
00:01:15 Susan
I said “um”, so you don't need to worry about whether or not you say “um” too much. [Alastair laughs]
00:01:20 Susan
I'm always very fascinated by how people grow up with their disabilities, their experiences in school, their experiences in tertiary education. Do you mind sharing a little bit of background?
00:01:32 Alastair
I'm really happy to share this, Susan, because I've reflected a lot on what happened when I was a child has still shaped a lot of how I interact with the world and how I behave and even think.
So firstly, we have to assume I was born deaf.
I was the first child and my parents didn't pick up that I was not speaking until about 18 to 24 months.
They noticed that the children of similar age of their friends were not, were all babbling and talking and I wasn't quite doing that.
So, when my parents found out that I was deaf, like many parents of the early 1970s, they wanted me to be part of the hearing world. So, I was fitted with hearing aids. I was sent off to hours and hours of speech pathology. This is why I can speak the way I do.
I still think I have a deaf voice. I still think I speak like a deaf person in terms of I don't always know how to pronounce a particular word.
But my parents at the time wanted me to be part of the hearing world and I understand that. You know, it was a new experience for them. They clearly were worried about my future, and they thought that making sure that I had all the hearing devices and support.
00:02:51 Alastair
So, when I reflect on that, it meant that it took me a lot longer to accept that I was deaf, and sign language is part of being deaf and visual language and visual communication.
So, for me, my journey has been very similar to many, and I think developing pride in who I am took a lot longer. But I must say, I'm forever grateful to my parents for not only what they did in terms of that support, but also the education and lifelong support.
00:03:24 Susan
I was born in 1985. My disability was very dramatic into this world. And like your parents, my parents decided that they were going to do as much as possible to try and get me to be as mobile as possible.
So, I wasn't in a wheelchair to begin with. I had callipers and crutches and I was hobbling all along, and I only just transitioned to the wheelchair when I was 15 years old. My parents did as much as they could, like for me to be able to be the person with disability in a walking world.
00:03:57 Susan
And I'm forever grateful for them.
00:03:58 Susan
So, when you were talking about how maybe transitioning into a disabled world was a little bit strange for you, I felt akin to that, because when I transitioned to my wheelchair when I was 15, it took a lot for me to realise I was one of many wheelchair users.
And there was like a little bit of uneasiness, really. And I hate saying that, but reflecting, it was exactly as it sounded. I just really did not know how to identify as somebody with a disability, with other people in disability.
00:04:33 Susan
I don't know if you've felt the same way?
00:04:34 Alastair
Oh, absolutely.
And I think when I look back on my childhood, I was also fascinated.
Once a year, my school, sorry, the deaf kids from my school, and I should clarify, I went to a private school in Adelaide that had a hearing unit.
00:04:48 Alastair
Now, it's called a hearing unit, when it should be a deaf unit… Anyway, that's a sock subject for another time perhaps, but every year there was an annual sports day where all the deaf kids from around in Adelaide and I think from around South Australia, they would come.
00:05:03 Alastair
And I was fascinated by seeing other kids using sign language. And I'd never really seen that. And over time I realised, well, hang on, that's the language.
They're very happy, they're communicating with each other, they're joyful, they're communicating, they're understanding each other, so that was a growing awareness.
So, when I was about 18 or 19...or maybe in my early 20s, I went off to formal AUSLAN Australian Sign Language classes because I love languages and I also knew this was the language that would mean so much to me as a deaf person.
00:05:39 Susan
Looking back at your life, would you have liked to have learnt that sooner?
Would that have been something that would have been - would you have been able to use it, I guess?
00:05:46 Alastair
Susan, I think, when I grew up, I was a very frustrated child, and many deaf people get this in a hearing environment.
“Oh, sorry, what did she say?”
“We'll tell you later.”
“Oh, it doesn't matter.”
“We'll tell you later.”
“Oh, it doesn't matter.”
00:06:00 Alastair
And when you grow up with that, you start to think, well, maybe it's me, and I knew that if I was told what was going on, I could contribute to the conversation.
00:06:10 Alastair
I loved reading. I loved watching the news and trying to read the newspapers. So, I felt if I knew what was going on, but to be told, “Oh, don't worry, you don't need to know.”
“Oh, we'll tell you later.” Of course that makes you…
00:06:23 Alastair
I was very, very frustrated.
00:06:25 Susan
You feel ashamed?
00:06:26 Alastair
Ashamed?
No, I felt inadequate. I felt… I felt inferior.
And I also felt, “Where's my place in the world?”
If I'm constantly told, “Oh, it doesn't matter.” Yes, I think, yes, that's part of it. So similar to you when you started using a wheelchair and then realised there are others, you're not alone.
So yes, it would have been fantastic to have had sign language from birth.
00:06:50 Alastair
But you know what? When I reflect on my life overall, my parents gave me a wonderful, solid foundation. I grew up very loved.
When I look back, I had aunts and uncles and grandparents all interested in what I was doing. I mean, let's face it, there was probably a bit of, oh, the ‘special’ kid. Oh, Alastair is special, we need to, you know, treat him carefully, that kind of thing.
00:07:13 Alastair
But still, I grew up thinking it was normal to have both all grandparents in my life. My grandparents were with me all through my childhood and they started leaving or dying in my early 20’s.
00:07:29 Susan
I think it speaks a lot to how invested your family is and you and I have very committed family members.
A lot of people don't have very committed family members for their disabilities.
00:07:39 Susan
There are a few people that I know, one, in particular, that I'm thinking about, I don't think that his parents really cared or tried to do as much as they could.
00:07:49 Susan
And so we are lucky in that situation where you have all the support and you're able to do that because what a difference it makes to have that sort of community around you.
00:07:58 Alastair
And I think what drives a lot of what I do is if we can get education right, if we can get support, whether it's family or non-family support, those are probably the two most important things that I can think of, particularly
00:08:12 Alastair
if you have a disability.
00:08:14 Alastair
whether it's art or sport or theatre or learning a language, another language, yes, if we can get those two pillars right, they support, whether it's within or outside the family, and education, where a child feels that they're actually part of the school and not an extra or a burden.
00:08:34 Alastair
And I grew up in a school which was mainstream, well, yes, private, but was mainstream with a unit, which is great for note-taking and for support.
00:08:46 Alastair
But by the time I got to university students, all of a sudden, I realised, oh, not everyone has had a life like I have.
00:08:55 Alastair
So putting that aside, my strongest reflections are
00:09:00 Alastair
If you can provide a child with the right support and let them choose also, their own support, the rest will be, the rest will unfold, but most importantly, it will give them the confidence and a platform of which to be proud.
00:09:13 Susan
Yeah, I love that.
00:09:19 Susan
So you have had many roles in your career and we're about to figure out whether or not the University of New South Wales bio was correct.
00:09:30 Susan
You've been CEO for the People with Disability Australia, Executive Director of the Community Legal Centres New South Wales, Policy Advisor for the New South Wales Government, and you're President of the Deaf Society of New South Wales amongst like supporting your community
00:09:46 Susan
in a number of ways.
00:09:47 Susan
What is your observations over the course of your lifetime and your career that you have had about how society in your world and what you've observed has treated people with disabilities?
00:09:59 Susan
How has it changed? Has it changed? What do you reckon?
00:10:04 Alastair
Oh, many fantastic questions there, Susan. I think my biggest reflection is I still want to change the world for the better.
However, I now appreciate sometimes it takes time, and it often does take time. Taking the time to invest in non-disabled people's understanding and awareness, and I'm still, and I'm sure you have this, and every day I'm struck by how little awareness the wider community have around disability, or they see disability as over there, the othering and you don't fit into our school, you don't fit into our workplace, you shouldn't be coming to theatres, you shouldn't be coming to the movies.
00:10:44 Alastair
So I think my observation over many years of working with government, with the community, with other stakeholders is it does take time, but of course that requires resources and you've got to work out what are the big strategic priorities here.
00:11:01 Alastair
But also, it's just also being a disabled person every day experiencing the microaggression.
00:11:07 Alastair
I've also become much better at self-care.
I used to feel guilty.
00:11:11 Susan
Tell me more.
00:11:13 Alastair
I love watching.
You ready for this?
00:11:15 Susan
Yep.
00:11:16 Alastair
The West Wing.
00:11:18 Susan
Oh, yeah, that's a rad show.
00:11:20 Alastair
So many of my life lessons I've learnt, or I've taken, from the West Wing.
CJ Cregg, you could not ask for a better press secretary.
00:11:29 Alastair
So these are things like that when I just take a bit of time out for myself and I've a binge watch it on a Sunday afternoon and then I'm ready to face the world on Monday morning.
00:11:41 Susan
So you're watching The West Wing and I'm watching absolute trash on YouTube.
I watch a lot of Reddit stories.
00:11:48 Alastair
Reddit stories?
00:11:50 Susan
Yes. It's so bad.
It's so bad.
00:11:52 Alastair
What a Reddit story.
00:11:53 Susan
Have you been on Reddit?
00:11:54 Alastair
No, I haven't.
00:11:55 Susan
That's a very toxic platform.
00:11:56 Susan
You've been on Reddit?
00:11:57 Producer Anh
Yeah, I have.
00:11:58 Susan
Yeah, what's your name, sorry?
00:12:00 Producer Anh
Anh.
00:12:00 Susan
Han?
00:12:01 Susan
Anh.
00:12:01 Susan
My, I can't believe I'm saying this to you - I'm actually, I can't believe that I'm here in this conversation with you.
00:12:06 Susan
My favourite trash self-care is watching.
00:12:11 Susan
Am I The Asshole stories on Reddit? [Producer Anh laughs]
00:12:14 Susan
That guy knows what's up.
00:12:16 Alastair
Oh, I used to get that on my feed, one of my Facebook feeds, and because you click on one, it then sends you, Am I The Asshole?
I swear some of them are made up.
00:12:28 Susan
Absolutely. But they make for a dramatic trash time and I love it.
So you've got to do some self-care in some way.
And for you, it's highly produced political drama.
And for me, it's the absolute depths of the internet.
So yeah, but you've got to find your own.
00:12:45 Alastair
I think, Susan, we live in such an ableist world.
We live in a world where daily we are dealing with, not only do we adapt quickly to situations and fund advice, but I think it's important to have a bit of an escape outlet.
00:12:56 Susan
Yeah.
00:12:58 Alastair
Remind ourselves of the sheer variety of life itself.
And I also try to take away, every time I meet somebody who's experienced a particular issue that I don't know about, just, “Okay, what is the one thing I can take away from this?”
00:13:12 Alastair
Because it's hard, particularly when I work with the Disability Royal Commission, and I did hundreds of private sessions.
And I thought, when I started with the Royal Commission, I thought, oh, I think I know a few things about disability.
I left that Royal Commission with an even deeper appreciation for the depth of some people's experiences.
00:13:35 Alastair
And it's a reminder to me that, yes, I'm disabled and I have my own unique experiences, but there's a whole range of things we need to be aware of and the challenges to how do we build that into a systemic reform process?
00:13:49 Susan
Reading the findings of the Disability Royal Commission was some of the hardest things I've ever, after the recommendations were handed down.
00:13:58 Susan
Somebody who was helping me out at work, we did this series where we were just talking about all the stories that had come out of the Royal Commission.
00:14:07 Susan
And they were horrible.
00:14:10 Susan
And there was a point where I had to turn to the lady who was assisting me and be like, “Are you okay?”
Because at the time, the thing we were working on was I was doing a piece to camera and just saying everybody's story.
I wanted to support it with percentages of, this is what's happening in Australia right now, X, Y, Z.
00:14:30 Susan
It's actually one of our most successful video series, but it was so heartbreaking and incredibly emotional.
And yeah, you literally don't know enough about disability, is what I learned.
I think you were the same?
00:14:46 Alastair
And I'm forever grateful to everyone and the organisation who came forward who are willing to, at times, be really raw and upfront about their experiences.
00:14:56 Alastair
So I'm grateful.
And that was one of the biggest drivers for what kept me and (Dr) Rhonda Galbally, the other openly disabled Commissioner, to just keep going and remind ourselves these people have invested time.
00:15:10 Alastair
And there are expectations. There are huge expectations with the final report.
00:15:14 Alastair
And I know that many expectations haven't been met, but that said, we have a set, a comprehensive set of information, evidence, data, data and information, you know, recommendations that we can keep working with.
00:15:30 Alastair
It's not perfect.
And that's another thing I try to remind myself, there's no such thing as perfect.
But they're aiming towards where we want to be in a better place.
00:15:41 Susan
I remember hearing a YouTuber say it's progress over perfection. So, I think that's what we are always aiming for, right?
00:15:48 Susan
What are your thoughts about what's happened since the recommendations, since everything?
00:15:53 Susan
Because it's been like a couple of years, or nearly a couple of years now.
00:15:56 Alastair
Yeah, 2 and a half, over now, on to 2 1/2 years.
So in October, sorry, September, October will be 3 years.
And, I mean, let's talk about what's happening now with the narrative around disabled people.
And I'm deeply disappointed.
00:16:13 Alastair
Oh, yes, we're making cuts, billions of cuts. Where are most of them coming from?
The NDIS.
00:16:19 Alastair
Now, I know there's still much to do with reforming of the NDIS, but you don't make cuts to people's budgets.
00:16:27 Alastair
When, really, the biggest problem is the behaviour and the attitudes and the systems out there in the world that are not allowing disabled people with their NDIS packages to access those.
00:16:40 Alastair
We are expected to just retreat back into a world that we had before the NDIS, which is frightening when I think about it.
So, we've still got a lot of work to do, I think, around that.
00:16:54 Susan
Something that I always reference, I'm currently studying right now.
I'm doing a Grad Diploma in Public Policy, and something I always reference because all of my assignments have just been about disability, equality, equity, all of that - is the United Nations Convention of the Rights of the People with Disabilities.
But you actually did some stuff with it.
00:17:14 Susan
Do you want to talk about that?
00:17:15 Alastair
Oh, that was an amazing time in my life.
00:17:17 Susan
Incredible.
00:17:18 Alastair
And you know what?
I was actually really very much following the giants of the disability community at the time.
People like Rosemary Kayess and Graeme Innes, and all those people who had been fighting literally on the streets for disability access.
00:17:34 Alastair
And I know that there are still people in the community who still [think] something like the United Nations as, you know, a toothless tiger and ineffective.
00:17:43 Alastair
But when you've got a document that you can point to and say, this is what life should be like for a disabled person, it helps with the conversation.
There's no point -
00:17:55 Alastair
My first manager gave me a brilliant lesson in life and how to work.
“Alastair, you've come to me with a blank page. I asked you to find something, a solution to this, but it's blank.
“That's not helping me.
“But if you start writing something, we can then start working with it.”
00:18:12 Alastair
So I think the CRPD, the Convention on the Rights of Persons with Disabilities, is so important to be able to point to.
00:18:19 Alastair
That's exactly - You know, for example, let's just talk about an example.
Article 12, as you know, is about supported decision making.
00:18:27 Alastair
Wouldn't that have been wonderful if that was back in the 1800s, something to point to and say, “You can't make a decision for that disabled person.”
00:18:34 Alastair
You work out how to make sure they can make their own decision.
What a wonderful cultural shift that would have been.
And yet, we're still in a world where others are making decisions for our disabled friends.
00:18:47 Susan
It literally says things about employment in there.
It literally says right to equal…
00:18:51 Susan
I, like, as an aside, like I did a paper about how skilled migrants into the country with a disability are often rejected, as well as family members who have child with a disability because they don't meet the health criteria.
00:19:06 Susan
That was for tuberculosis and we're still doing it now.
00:19:09 Alastair
That's right.
00:19:10 Susan
Yeah.
00:19:11 Alastair
And what does that say about the ongoing attitude and stigma?
00:19:15 Alastair
“Oh, you've got a disabled child. They'll be a burden on society.”
“They'll cost thousands of dollars.”
“They'll cost too much for us to be able to support them here in Australia.”
We know that's not true.
00:19:26 Alastair
We know with proper investment, with proper support and with the right attitude, they'll flourish, just like anyone.
00:19:34 Susan
Well, and I guess we're kind of also thinking about how, I mean, now we're talking about skilled migration.
When people think about skilled migration, they think about it as a very physical labour job. Couldn't possibly be done by somebody with a disability.
00:19:49 Susan
But we're now entering into an era of employment where, you know, I myself, I work from home most of the time.
00:19:55 Susan
Everything I have is at home.
00:19:57 Susan
I'm actually grateful that we live in this timeline where I'm able to do that because, you know,
00:20:02 Susan
Going back when I was first looking for a job where the internet wasn't really as incredible as it is now, I was being rejected from a lot of jobs. Opportunities were not on the equal footing for people.
00:20:16 Susan
But when you're talking about things like skilled migration, well, I'm sure that there is quite a number of roles on the skilled migration list that are computer-based in an office, can be done.
00:20:32 Alastair
Susan, you talked about how you've got everything set up for how you need and what you need at home.
I'm sure you were one of those people like myself when COVID happened and all of a sudden we all had to transition all from home.
00:20:46 Alastair
You and I were quite accomplished with the video platform, Zoom and Teams and all the other things, whereas our hearing and non-disabled colleagues, I know, struggled to adapt to all this.
But what did that say about how you and I have been working?
00:21:02 Alastair
We know what works for us. We know how we can then be productive and engage with the wider world. So it's fascinating. And now I'm seeing a bit of a regression back into that attitude.
00:21:14 Susan
I agree.
00:21:15 Susan
So I mean, as absolutely horrific as COVID was, just a bit of backstory, this podcast is funded by a grant, and in the parameters of the grant, it said that all podcasts would be recorded in the studio like we are today, and everybody will have to go out and do all these things.
00:21:35 Susan
Then as soon as the lockdown happened, this was at the very beginning of when this podcast began, and Google search later, I can record everything on my computer.
00:21:46 Susan
I went and bought a pretty good mic, and then I was ready to rock'n'roll, and all of my programs were on the computer.
It was so easy.
00:21:55 Susan
I got myself, ironically, a standing desk because people who sit do need standing desks. There were just so many things that was so easy to integrate.
00:22:05 Susan
And actually, I don't know if, I don't know how much, how much of your health is affected by your disability.
00:22:13 Susan
Do you have any secondary health conditions?
00:22:16 Alastair
I don't, and that's interesting. I think sometimes balance. I haven't really noticed it, but sometimes maybe because of my hearing, their hearing that I don't have balance.
00:22:28 Alastair
But generally, I mean, I just write that off as being a bit clumsy. Stumbling down the stairs or something, not falling, but stumble.
00:22:36 Susan
Yeah.
00:22:36 Susan
Because in my case before COVID, I have a history of being very physically like, I'm not, I had chronic fatigue syndrome.
00:22:47 Susan
I have, you know, a whole bunch of things. It's very physically demanding.
And I was very, very sick.
00:22:54 Susan
I felt very unwell leading up to COVID. And then we were all working from home.
00:22:58 Susan
And because I was not used to working from home, as much as I am now.
00:23:02 Susan
I was like, “My goodness, what am I going to do?”
00:23:04 Susan
And then one day, Alastair, I woke up and I felt refreshed. I felt energetic.
00:23:11 Susan
And I was thinking to myself, “What is the difference between what has happened before and what is happening now?”
00:23:17 Susan
And the only thing I can put it down to is the fact that I was not waking up at 5 o'clock in the morning to get ready for 1 1/2 hours, to then travel 1 1/2 hours, to then come back.
And the whole cycle of that was so exhausting. And now I just wake up and then I get ready and then I am working immediately.
00:23:36 Susan
And I think that maybe goes into like, it's really, I agree with you.
00:23:42 Susan
Something's going on in society where we're regressing back to must be in the office kind of nature, but then that is such a detriment to all the skilled workers out there who can do their job quite well from home.
00:23:56 Susan
What is it exactly about this office that is somehow making you a better employee now?
We were all good employees seven years ago.
00:24:08 Alastair
That's right.
And you know what?
There are many employees who have recognised that. So it's great to see the evolution and growing awareness of the different ways to achieve the same outcome.
00:24:20 Alastair
And that's one of the things I try to have conversations with people.
00:24:23 Alastair
So how did you get to the university, Susan? You drove yourself, if I can say that.
00:24:29 Susan
Of course you can.
00:24:30 Alastair
And you worked it out for yourself.
Well, I got here on the light rail. And so, but we've achieved the same outcome.
We're both here.
We're both able to do this recording.
00:24:41 Alastair
So employers who recognise the creativity and the innovation, they're the ones who will be leading the way.
And of course, we need to also remember what's good for a disabled person in terms of adjustment is probably going to be good for everybody.
00:24:57 Susan
I was literally going to say, I think it is a game changer for parents who have small children or people who are pregnant and who want to work and like, you know, physically might not be able to go to the office.
I think it's a game changer for like a lot of people in society who wouldn't have been able to do this pre-COVID.
I can't even believe we're saying a pre-COVID world, but anyway.
00:25:21 Alastair
And yet I think our job is still that, just keep, we just have to keep, you asked me earlier about what have I observed over all my many different roles.
And I've been fortunate to have had disability focused roles and roles that haven't had disability as the focus.
So I've been able to see a wide range of different ways of doing things.
And I think the other thing is government and policy making. We still really are not at the table, so to speak, and that awareness of disability and the incredible impact even one policy change can have on our lives.
00:26:00 Susan
I agree.
00:26:01 Susan
There's just not enough representation.
And not just as a politician, but also in policy making, in law, or let's just go to three tiers of government, right?
Legislation, executive and the law, like judicial, there's just not enough representation, period.
00:26:19 Susan
And then now we're seeing the effects of that.
00:26:23 Alastair
And if I can make a comment also on the narrative around the fraud or the allegations of fraud in the NDIS.
00:26:32 Alastair
Do you know what? It's actually the actual fraud itself is a very, very small part.
00:26:38 Susan
It's 4% to 6%.
00:26:39 Alastair
Not it maybe even that because when you also look at there are people who maybe actually maybe misunderstand or miscalculate or, what's the word I'm looking for?
Pay for something when it should have come out of a different line item.
I mean, that's bureaucratic, almost gone madness.
00:26:58 Alastair
But having said that, it's a very small percentage of the huge reforms that we need to be focusing on, and it's a concern that we seem to be also caught up in that.
00:27:11 Susan
So, let's talk about where I know you the best from, which is the Disability Discrimination Commissioner. I didn't realise that the Disability Discrimination Commissioner role itself only started in 1993.
00:27:23 Alastair
That's right, when the Disability Discrimination Act came into existence.
00:27:28 Susan
Yeah.
00:27:29 Susan
And so then you just sort of think to yourself, oh, so like, thank goodness we had families that were so supportive, right?
00:27:37 Susan
So before the Disability Discrimination Act, like, it's crazy.
00:27:41 Alastair
Well, you've reminded me, Susan, of my undergraduate experience at the University of Adelaide.
So I arrived on campus in 1988. I was still 17, so not 18 yet.
And also, as I explained earlier, I'd come from a way where I thought note-taking was normal. One-on-one support was normal in the school.
00:28:01 Alastair
So when I got to the University of Adelaide, I didn't feel a sense of entitlement. I felt I know what I need, what support I need to navigate and access my learning.
00:28:14 Alastair
So, I went to the disability liaison office or whatever it was called at the time and said I'd like note-taking.
“Oh no, we can't do that. Here's a tape recorder. Tape the lecture.”
00:28:26 Alastair
Go home, and I kid you not, Susan, repeat and listen until you actually think you've understood, or maybe your mum could transcribe the note.
So that was the attitude.
And then of course, 1992, 1993, the Disability Discrimination Act.
00:28:43 Alastair
So of course, then now there is a compliance approach.
But we are also, I think, getting better at embracing, still slowly, different ways of doing things. And of course, we are the leaders, we disabled people have been the leaders in using technology.
00:28:59 Alastair
I've got a captioning app on my phone. So now, if there's an announcement on the plane, I should turn it on and I can listen to the, or follow the announcement.
00:29:09 Alastair
So yes, the Disability Discrimination Act was a game changer at the time. Has it fulfilled all its promise and expectations?
00:29:17 Alastair
The Disability Discrimination Act was full of promise in 1993 when it came into law, and yet we still find that, and as I said repeatedly, attitude, the system, and also the wider community's understanding of what it means to be disabled.
So I think it's been useful in many ways, and we've seen some great reforms around education, employment, and a few other things like transport.
00:29:50 Alastair
So for example, the transport standard. But there still is an attitude, “oh, here we go again.”
“Oh, it's so expensive.”
“Oh, it's too hard.”
So, I think the biggest challenge is trying to make sure that disability is included in the conversations at the very beginning.
00:30:07 Alastair
Let's take, you use the metro, you use trains. When they're designing a new train, you should be part of it.
00:30:16 Susan
I was part of it. The one for the Blue Mountains trains that currently go through.
And it was by fluke - because of the job that I have now.
They wanted us to go in different wheelchair users to test and give feedback on the environment. And then by fluke, I subscribed to this user testing app called Askable.
And I just happened to come across somebody who wanted to use a test the Metro trains.
00:30:42 Susan
I have no idea how I would have gotten that information elsewhere.
00:30:47 Alastair
And that goes back to the central point of why are policymakers and government not thinking of that at the beginning?
00:30:54 Alastair
So honestly, I think when we think about universal design, when we think about planning, and when we also think about, hang on, disabled people, they're part of our community.
00:31:05 Susan
What? [Sarcastic]
Of course. They will want to use the train too.
00:31:08 Alastair
And I'll give you an example of where I think sometimes, we need to push back on the understanding. Sometimes people say, “Oh, well, no, we should build and provide more accessible taxis.”
00:31:20 Alastair
And I've said, well, yes, there's an argument for that, but the longer term game here is accessible public transport, because many disabled people want to and will use it.
00:31:34 Susan
And I think there's also something to say in city planning and urban planning. I know quite a number of people who use accessible taxis. Simply, I think, because everywhere to get to public transport is not good.
00:31:51 Susan
Footpaths are not good.
It's really actually quite dangerous.
I think people... maybe have to take a step back and think that, I don't know, like for yourself, it's dangerous.
Like if somebody's coming by, you can't hear it.
If somebody can't see me, because I'm too low to the ground.
00:32:08 Susan
So like there's just a lot of things that should be thought about in the beginning and not just obviously ours.
There's literally a myriad of different disabilities out there too.
00:32:18 Susan
When I wanted to take a bus to go into the city to go to the gallery one day, which was already just far too many things for me to do
From where I was living in the Blue Mountains, that blew me away.
When the first ramps came out onto the buses, that blew me away.
Where I was living in the Blue Mountains at a train station down the street, but then there was [sic] 100 stairs. So, you know, and then they put in a lift, I don't know, I want to say 10 years ago.
But, you know, I think there's progress as per the Disability Discrimination Act.
But yeah, you're right. At the beginning when you said it's so slow.
00:32:57 Alastair
And you've raised a really important point, Susan, about it's important to have the law as a driver of change.
00:33:02 Alastair
However, one of the things I'm loving about being here at the University of New South Wales is supporting the future graduates.
Think about...
And let's think, for example... If we were to build the Sydney Harbour Bridge brand new today, rather than almost 100 years ago, hopefully the graduates of today are actually thinking, oh, okay, so bridge, but there'll be multiple users.
00:33:25 Alastair
Some of them will be used in wheelchairs. Some of them will be using other forms of mobility devices.
Oh, let's not just build stairs. There's elevators, there's ramps.
So, can you imagine?
00:33:39 Alastair
My understanding is that a lift was only installed at the western, I think the western end of the Sydney Harbour Bridge 10, maybe 8, seven years ago.
00:33:51 Susan
I think so, because I just used it.
00:33:55 Alastair
There you go.
00:33:56 Alastair
But if we've got graduates who are thinking about universal access, design for everybody to use, that's the sort of thing that we need to see into the future.
00:34:05 Susan
I mean, I've said this in a few episodes.
We need more able-bodied people to be our advocates alongside us, but not just as a sounding board to us talking a lot about it, but also doing something, so we can also be assisted.
So, city planning for me is like a huge, huge deal.
00:34:28 Susan
Blue Mountains is a very tourist heavy town, right?
Want to go to a cafe?
I don't really have all the choices because there's steps. I really don't feel comfortable yelling in a cafe and asking them to assist me while I'm sitting outside.
00:34:46 Susan
I want the agency to be mine.
You know, bless my hairdresser, for example, in Enmore, who put a ramp in the front, like a portable one, just because of me.
So that, again, was just taking some agency.
He knows I want his repeated business.
I like being there.
00:35:05 Susan
Maybe Susan doesn't want to have help up a step. I don't know.
00:35:08 Alastair
And also, I don't know if you've reflected on this, but I'm much better now at not apologising for, you know, this, but also taking the time to invest if somebody really genuinely wants to do the right thing.
And most people do.
00:35:25 Alastair
So not assuming that they should get it right away. Sometimes they might need a bit of time.
But also, I've also stopped being...
“I'm so grateful.”
I do express gratitude, but I keep it to the minimum now.
00:35:39 Susan
Okay.
00:35:40 Alastair
With a point of, that's great, and you know, I would love it if more people did what you've done.
00:35:45 Alastair
So, you know, rather than, so I'm not apologising, I'm acknowledging, and I'm just, you know, expressing probably a minimal bit of gratitude, but remembering that individuals are often trying the best that they can, with the knowledge that they have, or the knowledge that they don't have.
00:36:03 Susan
I have tried to not be as instantly angry at somebody's ignorance. Do you know what I mean?
00:36:11 Alastair
If you reflect on all the time somebody has just started shouting at you for no reason, how did you feel?
What have I done?
Excuse me, what brought this on? Here's anger.
00:36:22 Alastair
It's okay to be angry, but let's channel it.
I tried to channel it in constructive way, but we're human.
And it's okay to have a moment of anger, but I think we have to get better at acknowledging why we're getting angry, but how?
00:36:39 Susan
I agree.
00:36:40 Susan
And also communicating.
So, for example, if there's, okay, so I kind of have tiers of fury when it comes to things that I'll be mad at now.
00:36:50 Susan
So I think for some people, I mean, especially when I was growing up, I used to be mad at everything because I don't know. I mean, it's not an irregulation of emotions.
I had an expectation. Those expectations weren't met.
All I can do now is just, like the anger is just boiling over and all I can do is start shouting.
00:37:12 Susan
Now, with some reflection and some lived experience and life experience, I know that if that isn't met, I can't, the person I'm about to yell at, probably not the one responsible for that thing.
00:37:31 Susan
Actually, this degree has taught me quite a lot about what to expect as somebody with a disability trying to... I want to change the system, Alastair [laughs].
00:37:41 Alastair
I know I wanted to do that, and I have to acknowledge we're all human at the end of the day, and being yelled at in an angry way does naturally build up, you know.
And look, as I said earlier, Susan, I was frustrated. I was a very frustrated child, and I took that out, particularly my mother.
We had lots and lots of screaming matches.
00:38:00 Alastair
The funny thing is, I can't remember now what most of those screaming matches were.
It was just that we were very similar. I think we would just, react.
00:38:10 Alastair
My father, on the other hand, was the most calm person you've ever met.
00:38:15 Susan
Sorry, are we the same people?
00:38:16 Alastair
Are you an only child?
00:38:19 Alastair
No, I'm the eldest of three.
00:38:22 Alastair
And you know what?
I've become much more like my father. I remember once in my life, I said something, I used the F-word, and even as it came out at the age of 15, I knew this was terrible, and what am I doing?
00:38:36 Alastair
I used the F-word to my father.
There was silence.
He walked off, and I thought, uh-oh.
00:38:45 Alastair
He came back and he said very calmly, “I don't think anyone ever called me that in my life,” and walked off.
Now, as I said, I can never remember what the screaming matches with my mother about, but I remember that moment in my life with my father.
00:38:59 Alastair
And I think that taught me, okay, you've got to remember calm.
And I think the calmness, no matter how much you're boiling, and we have every right as disabled people to be absolutely exploding, you know, fire coming out of our nostrils like dragons.
00:39:14 Alastair
But yes, I think it's really important to just acknowledge and try and channel it into better ways.
00:39:23 Susan
And I think actually off that, when I was growing up, like you, the internet was not really a thing that we held in our hands, is accessible all the time.
You're not getting everybody's opinions 40,000 times a day.
And I myself think about how I was probably at great risk of spiralling.
00:39:40 Susan
If I had enough information that was causing me to be afraid instead of empowering me to do something like or to work on something for whatever, I 100% think I would have spiralled out of control.
00:39:54 Susan
And I think there's something… I don't know, we can't really, you can't, you can't fight that algorithm, but there's just something happening.
I don't know if you also noticed it.
00:40:05 Alastair
There were times when I wished we'd had social media when I was young, you know, to acknowledge that I'm not alone and that my experiences have been shared by many across the globe.
That said, I think there's a lot of noise out there, there's a lot of distraction, and I think also we've got to learn, and I myself have been guilty of this, not just make a statement with no basis, because we're so angry and disabled.
00:40:32 Susan
Where are your citations?
00:40:34 Alastair
That’s right. ‘Thousands of people have been discriminated against.’
Actually, no. Let's just get some numbers here so that we can give a better context.
00:40:41 Alastair
That's why I'm so concerned about the narratives around fraud and the NDIS.
People out there are now going to think that disabled people are rotting the NDIS, and that's sticking in many ways, and that's terrible.
I think that's why we have to look at the fact.
So that's why social media is wonderful in many ways, but it's absolutely a distraction in many other ways.
00:41:06 Susan
Yeah, it is definitely like two sides of a coin, isn't it?
Like you, I wish that I had like people with disabilities who were very much the same as me so I could see them to avoid the fact that when I actually became a wheelchair user, I wasn't feeling… some type of way about the fact that I was also part of a community of other wheelchair users.
00:41:30 Susan
It's so dumb on reflection.
It's so dumb.
But I think there are probably people out there, like, you know, obviously who would relate to you and I in our experience.
00:41:39 Alastair
And I think that the important thing is to acknowledge the diversity of disability, as well as disability being part of the diversity of humankind.
00:41:57 Susan
So you talked about the future students and the future, your role at the UNSW, your role at the University of South Australia, your role as an educator for the future generations.
We've always, we have talked about why it's important for people to be educated, but let's talk about students with disability going into tertiary education and you as somebody who is..I've obviously done that now myself.
00:42:21 Alastair
Well, as you well know, firstly, the pathway or getting into university is a challenge in itself.
Where are the disabled kids in school?
Well, they are there to a degree, but they're not getting the education in an accessible format. They're not being part of the school community.
00:42:39 Alastair
But more importantly, they're not being able to be themselves in a way that will then develop pride in themselves, but also confident in what they can do into the future.
00:42:53 Alastair
So that's one thing I'm very keen to make sure that we address the pathway.
And then of course, when I reflect Susan on my first year at Adelaide University, you know, that expectation that I knew that if I had note-taking support at the minimum, I would be able to navigate the world, the university world a bit more easily.
And so now that's a big driver of how I want to make sure other students or students with disabilities now, even though they're smartphones and captioning, it's still a world that is very much designed for non-disabled people.
00:43:32 Alastair
And also, I don't know if you've noticed this, but a lot of people have also become very, you know, the social media driving a lot of misinformation and a lot of, you know, things aren't true.
00:43:43 Alastair
So it's a… It's a big challenge to be, I think, a university, a young person, 18, 19, 20, to be on campus.
If we can get onto campus, as you may have seen, the campus is not entirely accessible from A to B, but having said that, it's a work in progress.
00:44:00 Alastair
So, I think all that when I think about what does the future look like, giving students the space to be themselves, so disabled students, the confidence, but also support
And also, the ability to be part of, we should have disabled people, more students on the council, the student council in the club, all those sort of things that we take for granted.
00:44:25 Susan
And finally, as a final question, if you had to have the ability to instantly change one law, one piece of legislation, or both, what would it be?
And it doesn't have to be disability related, but it can if you want.
00:44:39 Alastair
Great question.
Well, to be technical, we recommended a Disability Rights Act, and the philosophy behind that was the United Nations Convention on the Rights of Persons with Disabilities, which has all the disability things you need.
If we could have that into domestic legislation, and it doesn't just have to be through a Human Rights Act, we need to make sure that every that we have.
00:45:03 Alastair
So, but if I had a magic wand, I would say absolutely embedding the Convention on the Rights of Persons with Disabilities into our domestic law.
00:45:15 Susan
High five.
00:45:15 Susan
High five.
[both high five across the desk]
Yeah, me too.
00:45:17 Susan
Thank you so much, Alistair.
00:45:18 Alastair
Oh, it's been an absolute pleasure, and I've had a wonderful time chatting to you.
00:45:22 Alastair
Thank you.
00:45:23 Alastair
Thank you.
00:45:25 Susan
You've been listening to Have the Nerve.
My name is Susan and this episode has been produced by Anh Nguyen and edited by me.
This podcast would not be possible without funding from the Department of Social Services as part of our long-running Resource Hub.
00:45:39 Susan
You can listen, watch and read stories of lived experience and expertise at scia.org.au.
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