Latest / Uncomfortable Conversations with Josh Szeps / "Who's Really Disabled?" with Kurt Fearnley

Transcript

"Who's Really Disabled?" with Kurt Fearnley · Uncomfortable Conversations with Josh Szeps

• 0:00
  G'day humans. Well, we are in the penultimate week of an election campaign in Australia,
• 0:06
  in which minority parties are advertising impossible nonsense, like that they'll hold interest rates
• 0:13
  at 3% somehow. And the major parties are targeting negative ads at micro-demographics on social media,
• 0:21
  where the leaders' debate was marred by shout-fests that sucked up all the oxygen in the room,
• 0:26
  the media chasing them along, like obedient little toads. This is not a political episode today,
• 0:33
  it's a consciously apolitical one. This is about the deepest conversations we have with ourselves
• 0:39
  and each other about what it means to be an individual, what it means to be part of a community,
• 0:46
  what it means to flourish and to decay. In the throes of a partisan political battle,
• 0:52
  perhaps more than ever, we need to lift our eyes and open our minds and talk to each other across
• 0:57
  the trenches, across the front line, in ways that are rational and provocative, and sometimes,
• 1:03
  yes, just a little uncomfortable.
• 1:06
  Today on the show, one of Australia's greatest Paralympians,
• 1:20
  Kurt Fernanley, an amazing bloke, born with a congenital disorder that prevented fetal development
• 1:27
  of certain parts of his lower spine, which has meant that he's always been unable to walk.
• 1:32
  He has risen to the heights of athletic triumph. He focuses on long and middle-distance wheelchair
• 1:40
  races. He's won medals in sprint relays as well. He participated in the 2000 Games, 2004, 2008,
• 1:46
  2012, 2016 Summer Paralympics. He has 13 medals, three gold, seven silver, three bronze.
• 1:54
  He's been triumphant at the Commonwealth Games. He was the Australian flag bearer at the closing
• 1:58
  ceremony of the 2018 Commonwealth Games, incredibly accomplished, and also a true humanitarian
• 2:04
  who has just channeled all of the celebrity and success that he's had into the most worthwhile
• 2:09
  causes. I won't bang on about him here. You'll hear what an incredible insightful and thoughtful
• 2:13
  person he is. I wanted to talk to him, the uncomfortable component of this conversation,
• 2:19
  is how do you talk to people who are living with a disability? Do you mention it? Do you not
• 2:24
  mention it? Like, when you relate to someone in a wheelchair, you don't quite know how to
• 2:28
  tiptoe around that. He's very blunt. He's very direct. He'll tell you how to talk. Please enjoy
• 2:34
  as much as I did, alternatively.
• 2:36
  How things been? Busy as buggery. Busy as hell, man. The world kind of opened up right,
• 2:56
  and not only opened up, but once everything done by June, and tell me everything to push
• 3:05
  anything out past July, particularly in Australia, I think we're a bit cautious to plan,
• 3:11
  ooh September, let's not go that far yet. Exactly. Who knows what's going to happen? It might
• 3:17
  be, I don't know what the next Greek letter is, but there might be another one. Correct.
• 3:21
  I think the confidence is coming back, but it's coming back in like a hurry, you know,
• 3:30
  in a standard, confident way where you can book something six months away and be happy to plan
• 3:38
  it. I was talking to a talk, but I was just talking to a talk back caller on the air and she was
• 3:45
  saying, oh, I've just planned my, she said, we've got a 60th high school reunion that we're planning,
• 3:52
  because we haven't been able to do it the last year and we weren't able to do it the year before,
• 3:55
  so we're finally going to do it now. And I said, when is it? And she goes, we're planning it for
• 3:59
  September. And even I and myself felt like, I was like, do I want to just do it now? I wouldn't
• 4:08
  be banking on September. I don't know what, you know, we're all going to be inside again in September.
• 4:12
  I don't know. Let's do it. If you want to do it, do it now. But yeah, well, that's, that's the
• 4:17
  reality. Yeah. How did you, how, how did you spend the pandemic? Where were you?
• 4:25
  I was, I have a 228 is just outside of Newcastle. Beautiful. So I spent a huge chunk of that time.
• 4:37
  And I, I built my own orchid fence and, you know, tables and chairs. I wish that there was a,
• 4:49
  I wish that I could have done the best reality TV show. Like, they can store me,
• 4:54
  cutting down trees and stripping off back and I'm climbing and I made this cubby house for my kids
• 5:00
  and I'm dangling off a tree two meters high, trying to put a strainer into the ground with my
• 5:06
  young fellow who was, who was only three off for footnote. He was probably four or five. If he's
• 5:11
  hand in me up a sore or a nail or an iron, it would have made, it would have made great TV.
• 5:17
  This is the problem with being, yeah, we're being an overachiever like you who's so self-sufficient.
• 5:23
  You know, I just think now you just have to do everything because you don't have it in year
• 5:28
  to actually allow other people to do anything for you. If it was me, I'd just be sitting on my fat
• 5:32
  ass having a glass of lemonade or a beer and watching other people do my work for me. But you're
• 5:37
  like, I'm good. I can do everything. I'm going to love the tree from turning it off.
• 5:42
  You know what, I do not do nothing very well. No, I get that impression about you. Yeah, you,
• 5:50
  I love you. I love doing well. I can do it for the limited periods of time, but it's just
• 5:57
  ingrained in me that I actually, I do more when I do more. I feel like I feel that is my kind of
• 6:06
  natural state is to be moving. And I did, however, I did pick up this, I'm not sure whether you
• 6:16
  familiar with it, but I have got a taste for gin and tonic. I'm familiar with that particular
• 6:26
  drink. I want a very, very strong taste for gin and tonic as well. Oh, wow. Well, you know,
• 6:32
  what, after racing for 25 years, I kind of, I don't know, there's something, I think there might
• 6:38
  be something to this gin and tonic thing. Yeah, I had a little bit too much gin and tonic and then
• 6:45
  during the pandemic, I was like, hmm, I'm either going to turn into a fat drunk or I'm going to start
• 6:52
  working out and I'm not drinking. So now I don't drink and I'm a bit, I'm, I'm fitter. I feel like
• 6:57
  the pandemic went that way, especially for able-bodied people where it was like, you know, we're either
• 7:02
  just going to sit around and just indulge our worst instincts or actually going to get up and
• 7:06
  up and about. And so I've spent the first year of the pandemic putting on about 10 kilos and then
• 7:13
  the second year of the pandemic taking 20 kilos off. Coming down on the gin and tonics.
• 7:20
  Well, I did the exact opposite. So there we go. There you go. You're shameless drunk. Do you
• 7:27
  want to tell people who might not be familiar with you or who might not be in Australia? This is your
• 7:34
  opportunity. You can get bashful after this, but just boast for a second about what the highlights of
• 7:40
  your athletic achievements are. Just touch on the greatest hits. I feel like this is for the next
• 7:52
  30 seconds. This is great. I won 13 Paralympic medals, three of them gold, two of them were the
• 8:03
  marathons in Athens and Beijing in 2004 and eight. One of them was the 5K in 2004, a podium done
• 8:11
  four consecutive times in both the 5,000 meters in the marathon in the wheelchairs from Athens or
• 8:16
  the way to Rio. One race 72 marathons, 142 of them including New York, Chicago, London, Chicago
• 8:26
  and New York with five-time winners. That's probably raised race wheelchairs for 25 years and
• 8:40
  benefited greatly for your audience in the US, benefited greatly from the culture over there
• 8:47
  that really did embrace wheelchair racing as a jewel as something that he's valued and
• 8:54
  spent huge chunks of my life kind of learning about the professional sport of wheelchair racing while
• 9:01
  well traveling around the US and Europe. When you say it all well like that, it sounds like you're
• 9:06
  really up yourself. What's that my family? Tell them about igniting yourself. I mean, have a
• 9:15
  one. You know what I say. My family, the highest compliment in the world in our family is pretty much
• 9:21
  if you did all right. You know, you did all right. Yeah, that's right. That's what I really know, isn't it?
• 9:27
  Well, part of me does think we need more marmalade in this country like we need a little bit of
• 9:34
  that confidence and that style that that we don't see very often but then we see the opposite
• 9:41
  of that and we see those Australian champions who are like we see Ashbody and there is no person
• 9:47
  in the world who I am more proud of displaying what it is to be in Australia than Ashbody.
• 9:54
  So that just confirms to me. Although inside I do think that even if it's just internally, we could
• 10:00
  have a bit of Muhammad Ali. Yeah, we are externally the thing that I love. We are Ash, the world
• 10:08
  number one who loves to have a beer at the cricket who will sign off as number one because there
• 10:15
  is something in the world that she wants to do that is completely different to the glamorous,
• 10:22
  you know, high paid lifestyle that world number one in tennis is able to give you will turn
• 10:28
  the back on in because the lifestyle that she wants is in the other direction. Yeah. Do you ever think
• 10:37
  about that? No, I knew when I wanted to go and it was it was obvious to me.
• 10:49
  Well, you say when you wanted to go but you're still dangling from a tree two meters up
• 10:53
  or lopping logs off and doing all the charity stuff that you're doing and doing all the TV stuff
• 10:58
  that you're doing. It's not you're not living a quite life. No, I mean, I will never know.
• 11:04
  I like I said, I think my natural state is someone that runs quick, you know, I enjoy having,
• 11:16
  I enjoy finding a pathway and just following it as fast and as far as I possibly can.
• 11:22
  The thought of stopping anything is just that it's not in me. You know, I'll never retire.
• 11:30
  I'll never I retired from wheelchair racing, but alongside that wheelchair racing, there is
• 11:35
  a thousand things that I loved. In fact, the wheelchair racing was probably in the last few years,
• 11:42
  it was secondary to all the other things that were happening. It just allowed me a chance to do a
• 11:50
  you know, to do a few years where I could think the people that that got me to where I was,
• 11:54
  but the the real enjoyment was happening outside of that already. And I could see that path when
• 12:00
  it's like I wanted to be there. It's just like I had to finish a few things off before I could do it.
• 12:07
  But to find out that you make the difference between Australians and Americans on that as well,
• 12:12
  I mean, I've always noticed that that too, that Americans, you know, I moved to America and,
• 12:18
  you know, you'd say you'd ask someone, oh, is the burger joint down the road any good? And they'd say,
• 12:23
  oh my god, it's the most amazing burger. That awesome. This is the best thing I've ever had in my
• 12:29
  entire life. And you know, in Australia, you could go to a three Michelin star restaurant, you know,
• 12:34
  you could go to one of the best restaurants in the world and ask an Aussie how it was and they go,
• 12:38
  yes, all right. There you go. And that means it's the best thing I've ever eaten in their entire lives.
• 12:46
  But yeah, when you say that it was sort of welcome when you were in America to see the amount of,
• 12:53
  I suppose, hype or respect that they had for wheelchair racing, did that? What did that mean to you?
• 13:05
  May well, we were still, over here, we were still fighting to actually get an entry to the race.
• 13:10
  The winners of the wheelchair marathons were being celebrated as, you know, if not equal to
• 13:17
  the non-disabled peers, there was a recognition that there was a pathway that we were going on
• 13:23
  over there that celebrated the excellence of what we could bring to the table. And we were,
• 13:31
  again, I was turning up to marathons in Australia, even in the early 2000s told that I couldn't race,
• 13:39
  told that, you know, that even after I had entered, it was just like, this isn't for you, you're a
• 13:45
  danger. And one of the things that we really found, I think that, culturally in Australia, we do
• 13:51
  disability really well. Like, we have a really robust conversation around disability. And we figure
• 13:58
  it out, you know, but in the US, they have a disability discrimination act. And that means that,
• 14:04
  if I would turn up to a marathon and they wouldn't allow me to even take part, I feel like I'd
• 14:11
  be a major shareholder of that marathon by the end of the day. If I turn it up to, if I turn
• 14:17
  it up to a flight and they said you're not allowed to enter because you're the third person in a
• 14:21
  wheelchair to check in, which is still still the ability of an airline in Australia. Then if I turn
• 14:27
  it up, my ticket can be cancelled because I'm considered to know how to an S-risk, the third wheelchair
• 14:33
  that's occupational health and safety for our non-Australians. Yeah, right. So you might have
• 14:37
  danger to the other passengers. I may be a danger to the staff to get me to exit that airline
• 14:46
  if there's an emergency. Even though the question is never given or asked, it's never asked,
• 14:55
  will you even need help to get off this flight in the case of an emergency? I'm actually an
• 15:00
  Olympian, so I'm probably going to be okay. Like, I'll be dragging you guys out. I'll be
• 15:04
  lopping lumber and helping out the flight attendant. Well, many, many, many people in wheelchairs,
• 15:10
  if it's an emergency, they will crawl and drag and do what they need to to get off this flight.
• 15:15
  There will be many other people who aren't in wheelchairs who may have highly
• 15:20
  anxious lives who may be physically and physically in worse shape than the person with the
• 15:27
  disabilities. They might be really fat. They may be more likely to have a heart attack than
• 15:38
  this 20-year-old person in a wheelchair who is seen to be this fragile thing. But in the reality,
• 15:46
  it's quite robust with their approach to life, but has never actually got to define their life
• 15:51
  because this wheelchair takes over everything. Is that a problem of cultural preconceptions
• 16:00
  or is that a problem of legal rules? I mean, if you didn't have occupational health and safety
• 16:05
  rules, then presumably a common sense flight attendant or checking agent would be able to say,
• 16:11
  I'll get on the plane. But if they have to abide by well, we'll have to make sure that they're
• 16:18
  only two people in wheelchairs on each flight, then maybe that causes more problems than it helps.
• 16:27
  I love this country. I think that there is so much great about the people and the culture,
• 16:35
  but sometimes we see a rule and we don't know how to break it, even if it's the wrong rule.
• 16:42
  We love a rule. We love a rule much more than many cultures. We've successfully
• 16:51
  exported this image to the rest of the world that Aussies are these crocodile-done-dee characters
• 16:56
  who are in the outback who are wrestling crocodile and don't care about anything. But you actually
• 17:01
  come here. We all drive at precisely the speed limit. We all, for rule comes in, during the pandemic,
• 17:07
  we don't break the rules. You don't have a fight over masks on airplanes like they're doing
• 17:11
  the states. You don't have a libertarian frontier strain. Everyone's very well, we know, we know
• 17:17
  what the rules are and we're all going to abide by them. Sometimes that can get you caught up in just
• 17:22
  a thicket of bureaucratic nonsense. You try to call Centrelink or something and you'll wait on
• 17:28
  hold and they'll be like, well, actually, you fill out section 14D, subsection five incorrectly
• 17:35
  when you added the CRN of your second child and then that was accidentally got linked to the wrong,
• 17:43
  so now you have to go through the portal and then do this and then you have to download
• 17:47
  the verification of the authenticator app in order to go back and you go, oh, come on,
• 17:51
  let me live a live live here. What am I doing? You know, in the rest of like,
• 17:56
  Ageroo, that's not good. It'll be wild in the states. People will just blow straight to it and
• 18:02
  they'll be like, I don't have a file, my tax is in 15 years and you know, the IRS is too
• 18:05
  complete confused and bungling to even know that you haven't done it. I do find that, but so does
• 18:11
  that then rundown especially poorly to you? Well, I'll add to that that when it comes to the
• 18:19
  there is pockets of of this country that is wild and free and amazing and crazy and you've
• 18:27
  got hold on to your seats. It's called Far North Queensland and Big Junction, Northern Territory
• 18:31
  and WA when you get into the area. Yeah, and there are 13 people who look there. There are only
• 18:35
  13 people in the country though. There are 24 million, you know, 99,987 people who don't look there.
• 18:45
  Yeah, but when you go there, it's pretty fun. What it really comes down to is that when the US
• 18:54
  has a disability discrimination out that requires the company to prove that they are not discriminating
• 19:01
  against you in Australia, we don't have that. We have to prove that the company is discriminating
• 19:06
  against us. So that means when we take a case to a to try and say that we are discriminating against,
• 19:13
  we are going against multi billion dollar companies who can afford whatever they can afford
• 19:18
  to protect their bottom line and our airline industry in particular, it's like a protected species.
• 19:24
  That's not, there are parts of that airline industry that it's not a consumer business,
• 19:30
  that is almost a national security business that you do not, you do not cross, which makes
• 19:36
  which makes travel for people in wheelchairs just complicated in this country. And we also have
• 19:42
  a duopoly where there's one huge airline that used to be owned by the government and was
• 19:48
  privatized and then basically one major competitor. And it's also not great in the States when they
• 19:55
  really only have four gigantic airlines and that a bunch of other smaller ones. But it's not like in
• 19:59
  Europe where you've got just a ton of different airlines. What's it like in Europe?
• 20:04
  No, it's US in the Europe. I feel every single time I catch a plane in Australia, I feel nervous.
• 20:11
  And I am my strongest advocate, right? Like I meet the world and I, like I said before,
• 20:18
  I have a very robust approach to everything. But every single time I go to travel in Australia,
• 20:24
  I'm nervous that is this the time that again, they say that I'm a third person, that they will
• 20:30
  try and take my wheelchair off me and check in, that they will do all of these things that you've
• 20:35
  experienced over time. In the US and Europe, I have none of that anxiety. I get to travel and be a
• 20:40
  father. I get to travel and be a husband or a brother or a coworker without being
• 20:48
  anxiety that the air travel in Australia particularly has on this. Can I just allocate the number
• 20:53
  of seats that they sell to people with special needs? You know what they could do with
• 20:59
  a thousand different things, but I think that they've simplified the rules, they've simplified
• 21:04
  the policy so that it can just be in and out and it's easy to say no then to adjust.
• 21:09
  And it's being defended and it's it is it is that fortunately of all the of all the battles
• 21:16
  that are had that that's kind of been before is whether it's my generation or the generations
• 21:22
  before that one is still ongoing. And when you buy a ticket, sorry for my ignorance, but when
• 21:27
  you buy a ticket, isn't there a box that you can check, can check saying you know that this
• 21:33
  person has special needs or this person is in a wheelchair or whatever and couldn't they just say
• 21:37
  like if they're selling five seats like that and they know that they're only going to allow
• 21:40
  two on the plane and it's just first come first serve and then they're going to boot everybody else
• 21:44
  off. That doesn't seem like a system that's well thought out or do you not put it in when you
• 21:48
  when you're booking the ticket they not know until you show up? Some people may mistakenly not
• 21:52
  put it in and they just show up. I've put it in and then a week later I've had a phone call to say
• 21:57
  that you are the third person in wheelchair that has brought this ticket when you're five days
• 22:02
  away from traveling. We're going to put you on the next flight that only has one person who was
• 22:08
  clicked that button and that is four days later. And I've went to do that around Christmas,
• 22:14
  my family had two kids, my partner, my mom, my dad were flying on this flight. My ticket was
• 22:19
  canceled because there was considered to be two other people already already booked in. So I had
• 22:26
  to change change, go from Newcastle which is somewhat of a regional center into Sydney to fly
• 22:33
  to the destination for Christmas and my family couldn't because we couldn't get all the tickets
• 22:38
  on there. So they got on this flight and there was not one other person in a wheelchair. There were
• 22:43
  two elderly people who clicked on this special assistance button, yet requiring such little special
• 22:50
  assistance that it should not have qualified. But that is those interactions and it's nonsense.
• 22:59
  It's not logical but they're the sort of battles that people with disabilities are
• 23:03
  fighting on a day-to-day basis. And I would say that there are many occasions where people with
• 23:11
  disabilities are lives are defined by the people that don't have disabilities, that have never had
• 23:16
  disabilities, but they look on disability and they perceive and try and get their head around
• 23:21
  what they would do if they were in this situation. Oh my God, I wouldn't. I wouldn't be able to cope
• 23:27
  if I was in a wheelchair. I would want all the assistance in the world. In the reality is that if
• 23:32
  you're landing that situation, you do what you've got to because there is no alternative. And
• 23:38
  they don't have the experience. Of course you wouldn't be able to handle it because you're
• 23:41
  an able-bodied fuck with it. I've been living in a wheelchair all my life. Don't tell me what you
• 23:45
  wouldn't be able to do if you were in my position. Look at what I do in my position. Or just ask.
• 23:50
  Just ask. Be like, hey mate, how can I help? How can I be of assistance? How can I make these
• 23:56
  journey easy for it? And you might get the response, you can make it easy. You already have,
• 24:01
  because I get to tell you right now, bugger off. I'm good. I can do this thing on my own.
• 24:07
  And I always find that that's always the best way to approach it.
• 24:14
  And so just before we get away from airplanes, what happens in the US and Europe if, you know,
• 24:19
  12 people have all booked on the same flight and they all show up in wheelchairs? Is there
• 24:23
  what happens logistically? Well, I know that if I would turn up into the US, there is no way
• 24:28
  that I get turned back. UX actually have a great system where the first wheelchair is stored on
• 24:32
  board. The second wheelchair is potentially stored on board if there is space. Every wheelchair
• 24:38
  after that will be tagged, gate checked, put into the back of the plane, brought up on arrival,
• 24:44
  and it is smooth and amazing. Do you have a special narrow wheelchair to get down the aisle of a
• 24:53
  plane? How does that work? So I've actually made my chair. Every time I go over, there's a
• 24:58
  wheelchair manufacturer in Florida that I would spend some time with and make my chair specifically
• 25:03
  for me. And I made it. It's called seven kilos. So it's as light as hand luggage and it
• 25:09
  ends at the constructs and fits in the overhead baggage. So when I'm in the US, I never even check
• 25:14
  my chair in Europe. I never even check my chair in. I fly down the aisle. I throw the chair in
• 25:20
  the other head baggage and I am on my way. And I made it that way because of the, I was hoping that
• 25:27
  I could try and do something similar in Australia, but there was just no, there's just no space
• 25:33
  for that. So the counter-argument against laws like Americans is, you know, I know people who have
• 25:39
  tried to set up, you know, little restaurants in California, or they've, you know, they've
• 25:45
  wanted to expand a little bit. And then there's this thicket of regulations that they have to go
• 25:49
  through. So there are fire codes that are very own. There's this, there's that. And one of them
• 25:53
  is the Americans with Disability Act, which a lot of small business people wind you about because
• 25:57
  they'll go, you know, I just, all I wanted to do was just extend out onto the, onto the pavement
• 26:01
  here so that people could sit out there. But in order to do so, I don't need to build a bloody
• 26:05
  great wheelchair ramp that goes all the way around, you know, and I don't have the money to do that.
• 26:09
  And it's not actually necessary. But again, coming back to the rules, the rules are the rules.
• 26:14
  And you're going to have to, well, what if someone who was, you know, who was severely handicapped,
• 26:19
  was trying to come in and then they, you know, they need to, they're like, what are they,
• 26:22
  what, what do we need to do? I need to build a big slingshot to be able to fly them up and, you know,
• 26:25
  hold the roof to be able to trampoline and everything. Come on, I'm just trying to have a cafe here.
• 26:29
  And this is, this is too difficult. What do you say to those people?
• 26:33
  Oh, look, if we're, if we're all annoyed at each other a little bit in community, we're probably
• 26:37
  doing something right. And I, and I say that because, you know, like even in the disability
• 26:42
  community, I run over the, the little dots for those who are visually impaired on the roads.
• 26:48
  And it shakes my kidneys. And I find it pretty bloody tough. Of course, you know, the,
• 26:54
  the, the bumps that are there. Yeah, in Australia, there are, yeah, there are a little ridges,
• 26:58
  little raised ridges along the pavement, the sidewalks, so that people who have
• 27:03
  usually impaired don't walk straight onto the road. They can feel a little on their feet, right?
• 27:06
  Correct. Some amputees may not like the fact that there are long ramps to get up to get
• 27:10
  into a building. They've made a third that there is actually steps. It's easier.
• 27:15
  You know, there, there, there is this, there is this acceptance that we're going to go through
• 27:19
  a bit of difficulty to make sure that everybody gets to have a bit of a, a bit of an experience
• 27:25
  in life. And I know that that is frustrating sometimes to be able to sit down and take on
• 27:31
  the complex world of disability. But when you get through that annoyance, it stops the absolute
• 27:40
  disruption of that person's entire life, not a, not a frustration. It is an absolute
• 27:47
  disruption. If I turn up to a space and I can't get through, it's not an annoyance. It often
• 27:55
  means I've got to go home. Or if I turn up to a space and my children who are non-disabled,
• 28:02
  if they can enter into the space and I can't be a father past that point,
• 28:07
  then my life is not able to find to me, but it's to find to my kids that their father is
• 28:13
  less. And my, my partner, or if it is my coworker, or if it is my, my, my junior in my workspace.
• 28:20
  So we're not, we're, we are talking about things like, like, regulation as a frustration. And
• 28:27
  I completely understand that it is a frustration because there is this really complex thing that
• 28:32
  we're trying to create regulation to, to bring in. And it does get messy in there. But again,
• 28:40
  we're not dealing with a frustration to, to, to, to help another person's frustration. We're doing
• 28:48
  it to stop somebody from completely being excluded from a, a life experience. And, and I think
• 28:56
  a bit of frustration is actually worth doing to get through to that point. And once it's done,
• 29:00
  usually it's done. Like it is, it is finished. Rather than it being a, a, a, a barrier forever,
• 29:09
  once you've invested the time and energy to create a space that is accessible to everyone,
• 29:14
  that's accessible to everyone forever. That particular space is, but everything else that
• 29:20
  then subsequently needs to be done also needs to, needs to comply with the rules. Like there's a,
• 29:25
  I read a, a big piece, I think it was in Esquire or Vanity Fair about this couple who, or the New
• 29:30
  Yorkers, I mean, there was this, there's a couple in California who've taken upon themselves
• 29:34
  to be disability rights litigators. And they'll go around to, to, they'll call a place in
• 29:42
  advance and they'll say, you know, we have unique, unique needs, the place they'll say, yep,
• 29:46
  of course, we comply with the emergency disability act. And they go, they go around, they're
• 29:50
  married couple and they'll show up at a, at a place. And then they'll start measuring exactly,
• 29:56
  you know, how, how far it is, I mean, and if it's a, if it's a millimeter out, then they stage
• 30:02
  some sort of upset, you know, one of them will fall over or one of them will drop a glass or
• 30:07
  something like that. Then they've got the same high of flying lawyer and they sue these small
• 30:12
  businesses and the small business and, and they go around and they think they're doing God's work
• 30:16
  basically because they're making sure that compliance is, is up to scratch. But of course,
• 30:22
  you know, the small businesses are saying, look, if you need us to comply to the letter,
• 30:26
  then they should, then the regulator themselves should be, I don't know, doing spot checks and
• 30:30
  just helping us to make sure that we're complying because if you read the, you know, 100 pages of
• 30:35
  the, of the legislation, we're not going to get every single little thing right. But instead of
• 30:39
  just being given a tap on the shoulder and say, hey, can you fix this? Can you fix that?
• 30:43
  They're having to pay lawyers to go to court and they're ending up being bankrupted because then
• 30:47
  there are these $10 million, you know, payouts and all this sort of jazz from the emotional trauma
• 30:52
  from when the person dropped the cup because the, you know, the, the thing was one millimeter out to,
• 30:56
  to code. And the backlash then is from people saying, oh, this whole thing is bloody stupid.
• 31:03
  You know, you know, if, if, if you have special needs, then that's unfortunate, but life sort of
• 31:08
  sucks for everybody. Everybody's got particular challenges. And if you can't do this, then well,
• 31:12
  I can't do that either. So you got to sort of suck it up and cop it.
• 31:16
  Well, bring that on. Like, let's have that conversation and, and let's see who, who wins the battle
• 31:21
  in the court and the, you know, in that, in that, in that common square. And the point that you make
• 31:28
  is kind of like the point on everything that, that those two individuals say if they are gone
• 31:33
  around and they are measuring millimeter by millimeter, they've probably seen a politician talking
• 31:38
  about how they want to reduce the disability discrimination act that we need to get rid of
• 31:42
  regulation. And because they see somebody going to the far thing, you know, the fringe on that way,
• 31:48
  we see this, we see this push towards the other direction. And, and does that allow to be that,
• 31:56
  to be, you know, bring the middle closer to where it should be or does it just create a fight that
• 32:02
  will continue to go and just, and just cause disruption and distrust and, and, you know,
• 32:09
  I personally think that we need people to push barriers. We need people to push in a direction,
• 32:16
  and then you allow people to go into the, the middle space and figure and figure something out in
• 32:23
  there. How do you reckon that would go in Australia though? Like, what do you think? Well, I mean,
• 32:28
  I think we're just generally thank goodness a bit less extreme on everything that Americans are,
• 32:34
  you know, you can, you can take any measurement that you want. And that has good upsides, you know,
• 32:39
  the civil rights movement of the 1960s with more fierce in America. And it put an end to Jim Crow.
• 32:46
  I mean, their political system is more extreme, you know, no one like someone like Obama could never
• 32:51
  have become the leader of a parliamentary democracy like Australia, but someone like Trump also couldn't.
• 32:57
  So you, you know, you take the good with the bad. And I just think they get, you know, the culture
• 33:03
  wars at the moment in terms of, you know, their cancel culture and their hysteria around,
• 33:08
  I don't know, gender pronouns or whatever it might be. And then the backlash from the right on
• 33:13
  like banning schoolbooks that mentioned gay parents and stuff, there's just a lot more
• 33:18
  roiling kind of antagonism over there, which I think we don't have thankfully. But I think you're
• 33:23
  right that to put your finger on the fact that, you know, each extreme then empowers the other
• 33:29
  extreme. And I think when you're talking about your life and your ability, as you say, to be a
• 33:34
  father to your kids and your ability to just participate in civil society, then the last thing
• 33:40
  you want to do is turn that into a toxic, I mean, it's the same with like the LGBTQI plus issues
• 33:45
  and stuff like that and, you know, transgender, transgender people in sports and stuff. Like the
• 33:50
  more it becomes a political football for the bystanders to argue about the worst sort of is for
• 33:56
  everybody. And if we can turn the temperature down a bit and just have have technocratic walks,
• 34:01
  figure all this stuff out and remove ourselves from the debate, then I think the better we end up
• 34:08
  being. See, part of me also wonders though, when it comes to particularly, if we're talking about
• 34:12
  small business, say, I think it was non-in-91 in Australia, we had a prime minister called Bob Hawke,
• 34:19
  who said that every building will be accessible to every, every person, every child that wishes
• 34:25
  to enter it in 10 years. Now, business could have started, every business could have started
• 34:33
  putting money as money away to start to prepare for this regulation. Instead, nine years later,
• 34:39
  everyone was terrified and it was pushed out another 10 years and then another 10 years. And now
• 34:45
  we're still sitting here going past places that are not accessible. Like when are we going to stop
• 34:50
  to stop fighting a battle as if it's in the moment and start actually recognising that this is
• 34:56
  something that we should have been doing for three decades. So what is the law now? Is there,
• 35:02
  I mean pardon my ignorance, but I assumed that there would now be some kind of public accommodations
• 35:07
  requirement that if you are a public, if you're open to the public that that has to be accessible
• 35:11
  to everybody, that's not the case. Walk down the street and see how many shops that you pass that
• 35:16
  have steps in front of it. As soon as you start seeing, you start seeing. And I think that it is,
• 35:24
  like a company has to make reasonable adjustments and has to be a bit the accountability side of
• 35:35
  that just is not there in Australia. So we do see in the US, you do see those far-flung stories of
• 35:42
  just what what seemed to be completely unreasonable interactions with community. But dear bloody god
• 35:52
  that makes my life easier. It's funny, isn't it? I mean, Americans like to, again, this is almost
• 35:58
  like the flip side of the illusion that Australians have been able to export about themselves. Americans
• 36:03
  have been able to export this idea about themselves that they're capitalist and they're raw in
• 36:10
  tooth and claw and there are a place that is the least sort of socialistic of all the Western
• 36:17
  democracies. But in actual fact, when you live there, I mean, if you go to a post office, it feels
• 36:23
  like you're in the Soviet Union. And if you go and try to get your drivers license from you, it feels
• 36:27
  like you're in Moscow in the 1950s. There is incredibly heavily unionized industries, especially
• 36:34
  government bureaucracies where people walk at the pace of an obese loft to go from one filing cabinet
• 36:40
  to another. And that's the downside of it. And then on the upside of it, you do have these very
• 36:48
  very strict rules about stuff like that that does make people's lives easier. And here maybe part of
• 36:54
  our sort of, I don't know, part of our attitude towards things. I can't really reconcile Australians'
• 37:00
  obedience with our lack of willingness to put rules in place to make the life of people like you
• 37:07
  easier. But certainly in America, it's not the case that America is just this freewheeling,
• 37:14
  let it go, business can do whatever it wants to, kind of corporate paradise.
• 37:19
  Yeah, it does my head in a little bit too. But I totally love that joint. The US is so complicated
• 37:26
  and it is so, it is such an, in Australia, we might paint a picture. It's like the US
• 37:37
  paint this picture and it is expanded on every age where it so much just intensity in everything
• 37:47
  that it does. And the last couple of years, it's the first couple of years that haven't been there
• 37:51
  for since 193. And yeah, there is just so much about that place that I think is
• 38:01
  entertaining and out there and full of energy. But there is also a hardship there that is like
• 38:08
  out of control as well. Yeah, totally, totally. I've seen poverty in the States for
• 38:13
  some like anything I've seen anywhere in the world, including in the developing world. Because
• 38:17
  in the developing world, at least everyone is sort of on the same, you know, you walk through a
• 38:22
  slam in Mumbai and at least everybody, that's their life and they're operating within a context.
• 38:28
  I mean, it's awful, but they're operating within a context in which things are set up for them to
• 38:32
  be able to function somewhat. Their community functions at that state of development and that
• 38:38
  state of resources. And their families still stay together and their lives still move on.
• 38:46
  But in places where Western civilization is just broken down altogether, like, I mean, I went
• 38:51
  through, I went on a drive through New Orleans not long after it was demolished by the hurricane.
• 38:59
  And, you know, about 18 months later, and you know, there are people living in conditions where
• 39:04
  there's a total breakdown, a total breakdown of family, community, law and order structure.
• 39:09
  It's chaos. It's like something, you know, it's like something I've never seen in Africa or Asia.
• 39:15
  But when have you, whenever you, whenever you travel, I think the disability tells a really
• 39:22
  interesting story, like a really complicated story. Like I've crawled into places where you have
• 39:28
  to crawl into getting there. And the experience with disability is one of the most challenging things
• 39:33
  that I've ever seen. Like right now, wherever you zoom into whatever part of the world, you go into
• 39:39
  the most, you know, hidden, challenging tiny little village in some, you know, country that the
• 39:51
  tourist track misses, no matter how vulnerable a community gets, there's always a person with
• 39:57
  the disability there, exponentially more vulnerable sitting in the dirt. And we have this huge variation
• 40:07
  of existence now. The goal mental of the powerland big games where we are the third, the third
• 40:13
  biggest multi sport event in the world built over the last 60 years and then our community.
• 40:22
  Well, two thirds of the world who require a wheelchair don't even have one, you know. So
• 40:28
  we have this really progressed community that is there's kind of leaving another one behind.
• 40:37
  And so it's a really challenging, it's a really challenging part of this world.
• 40:44
  What places have you crawled into?
• 40:46
  I've crawled into the ones that I've crawled into is there's a township of community.
• 40:55
  And it's called Makuru just on the outside of Nairobi. There's a couple of great schools in there
• 41:04
  where the Rubin Centre that educates 1800 children that has a lot of Australian and their
• 41:09
  working US donors. And I've got about 80 kids with disabilities in there in the
• 41:16
  Kerf only centre. And it was one of the, you know, like when the US we saw foreign aid be cut in,
• 41:24
  I think it was 2017, you know. And months after that you see just the flower coming from US aid stop,
• 41:32
  you know, like we see this tiny little percentage of our GDP reduced out of foreign aid.
• 41:39
  And then you see 80 or 100 or 1800 children just stuck in the meal.
• 41:46
  I've crawled into PNG where Papua New Guinea, which is, it's a three hour flight from Australia,
• 41:53
  but it's one of the most, it's one of the hardest communities, you know, that I've seen.
• 42:01
  I've not crawled into but been invited into Yarmul Griffey GCamp in the years before it was flattened
• 42:11
  and met with teachers and principals to encourage the participation and to highlight the need to
• 42:20
  have all variation of child within their classroom, you know, that these children can't be isolated
• 42:26
  with mum and dad because an isolated child who means to an isolated and a life means to an
• 42:32
  early death means to a greater risk of marginalisation and predatory behaviour on them. And,
• 42:40
  yeah, whatever kind of, whenever I try and whenever I find out about a program that's doing
• 42:47
  great stuff in education or wanting to bring kids with disabilities into education, I've tried
• 42:53
  to whatever I can to, if I can't play a part by will, I am a teacher, my high school teacher,
• 42:59
  and I grew up crawling around the bushing carcass. It's right in the central,
• 43:06
  central part of New South Wales in Australia. It's, and even in Australia, we have huge
• 43:14
  isolation. Like we, we talk about how the majority of people buy fire, what, we're 25 million
• 43:19
  people, do you say, and 24 million of them are in metropolitan centres around the cars.
• 43:24
  If you go inside, like I grew up, there was no concrete, you know, there was no, there was no
• 43:29
  asphalt, a bitumen, I grew up crawling for the first decade of my life, and I was valued and
• 43:35
  welcomed as I was, you know, like I was welcomed into the community. Crawling around my school,
• 43:40
  there was no hesitation, there was no awkward looks, I was in a school of 16 people and they were
• 43:46
  all my family, and they loved me, and they welcomed me, and I felt like I could be who I was,
• 43:54
  but there was an isolation in the fact that my hands are in the dirt, and everybody else was
• 44:01
  walking around. And still to this day, there are huge chunks of my community that are still in the
• 44:09
  dirt, and will not be able to leave it unless there is just a complete, well, I actually, the reality
• 44:19
  is that when I go and work in these spaces is that I know I can't, I, it may not change for everybody,
• 44:24
  and there may be people still crawling around in the dirt isolated in 100 or 200 years from now,
• 44:30
  but when you go into these spaces, you accept that you can do whatever you can do to change that,
• 44:39
  one moment, and I love that, and that's been... When you say, when you say there are huge chunks of
• 44:45
  your community, and use that term community, I'm interested in that because when did that sense of
• 44:51
  you being, I guess, a representative of a community evolve? Like I, I always have difficulty
• 44:59
  with that community, it's like I'm married to a guy, and my husband will, he'll talk about,
• 45:03
  you know, the LGBTQI plus community, and he'll be including in that, you know, some gender
• 45:08
  queer person on the other side of the world who has, who we've never met, who has nothing
• 45:14
  in common with us, I have much more in common with my straight work colleagues and my friends
• 45:20
  here than I do with that person, you know, my grandparents were also Holocaust survivors,
• 45:25
  and so they were very passionate about their Jewishness and about the legacy of, you know,
• 45:29
  oppression that our people have suffered for thousands of years, and I also think, you know,
• 45:34
  what, I don't like what Israel has become, I don't like what they're doing, I don't really feel
• 45:38
  any affinity for the Jewish community, I mean, I'm ethnically Jewish, I guess, but I mean,
• 45:44
  I don't want to think about that community because I have much more in common, I think, with,
• 45:48
  you know, someone who's struggling in Palestine, just emotionally, just empathically,
• 45:54
  than I do with, like, world jubilee, and so I'm not crazy, I'm not crazy about, like,
• 46:01
  community, when it's used as a way of trying to force us into kind of tribes who are competing
• 46:08
  over the scraps of a finite pie, I much rather sort of think about us as individuals and trying
• 46:14
  to come together and have and find whatever common ground we can, but obviously there's a utility
• 46:20
  in people thinking about community because otherwise, you know, communities who suffer unique
• 46:24
  problems don't have anyone to speak on their behalf apart from people inside their quote-unquote
• 46:29
  community. When did you start using that term? How does it relate to you? A couple of, I guess,
• 46:37
  a couple of moments that I think enhanced it. One of them was when, so I grew up not seeing
• 46:42
  any other person with a disability until I was 12 or 13. There were no people in wheelchairs
• 46:49
  at my school. Like I said, I was in a school of 16 people for the first six years,
• 46:54
  seven years, and then high school, it was a school of 300 people, but still I just did not see
• 47:00
  anyone in a chair unless I was at a hospital, and then they were sick, and I thought, well,
• 47:05
  I must be the only person in a wheelchair that's not sick. And then I found the Paralympic world,
• 47:10
  and our first Paralympian, Australian Paralympian is Uncle Kevin Koo, he's an Indigenous guy,
• 47:18
  and we all know him as Uncle, and we knew all of the other first Paralympians as Uncle's and
• 47:26
  Arnes, and they welcomed us into the community, and they just, they just, they'd build us, you know,
• 47:32
  like they taught me what it used to be a person in a wheelchair. I remember Michael Callahan,
• 47:38
  Michael Wood, he was a wheelchair basketball player for the Australian wheelchair basketball team.
• 47:43
  He saw me come out and he grabbed me and he said, get rid of those handlebars and get rid of
• 47:50
  those brakes, and I'm 12, and he says, nobody should push you, only you choose where you go and how
• 47:56
  you go, and I went home and I hacked them off with a hacksaw, and then, and then I get Jeff Adams,
• 48:02
  a wheelchair racer, well champion out of Canada, he allowed me to live in his house for a month
• 48:09
  to learn what it is to be a wheelchair racer. Louise Safar is Australia's greatest Paralympian,
• 48:14
  she would pick me up at the airport when I would fly on a regional airline down to Sydney,
• 48:18
  or the train station, she would feed me and she would just give me a taste of what the life
• 48:24
  was like that I was entering into. Shantel Petticoot from Canada, Tenegrae Thompson from the UK,
• 48:30
  if that's not community and family, I don't know what is, and then when I started to work with
• 48:35
  disability in, in the developing world, I will crawl into that McCrew township, two million people,
• 48:46
  and I will crawl past, you know, a thousand people, and I will sit in the house of a kid with
• 48:51
  a disability who will look at me, and that child with her is much hunger and desire as I've ever had.
• 49:00
  And that kid sees me as their family because it's the first time that they have seen somebody
• 49:06
  in the world that looks like them, and I was there, you know, I was there when I was 12 years old,
• 49:12
  so when I think about community, this is my family because there is as much care and
• 49:19
  love and support in that community as I have felt from my extremely loving and caring mother and
• 49:25
  father and brothers and sisters, and isn't that what we do with our brothers and sisters,
• 49:32
  like we look at them and we have a care and an understanding of where they want to be and who
• 49:38
  they want to be, and that is the exact same feeling that I felt when I was 12 with Uncle Kevin,
• 49:45
  or 18 with Jeff Adams, or 21 with Tenegrae Thompson, who is the UK's greatest Paralympian as well,
• 49:54
  or when I was 29 sitting in one of the towns on the Cocoa track looking at a kid that had a
• 50:01
  desire to have more in his life and saw it for the very first time when I was sitting next to him,
• 50:07
  looking back. So if it's not community, I don't know, I don't know if there's a word there that
• 50:16
  better describes it. And what was the community like in the town where you grew up? You mentioned
• 50:22
  Carpool, you were, this is about 50k's from Bathurst in the central west of New South Wales,
• 50:29
  a town of what, it has a couple hundred people now, don't know how many people had back then.
• 50:34
  211 probably.
• 50:39
  That's right. Yeah, they're ruined the day they lost you mate. They're like, yeah, you just,
• 50:44
  we had it so good until he bugged off. What were things like when you were like in primary school,
• 50:50
  when you're five, six, seven, how were you getting around? You say you were crawling around,
• 50:54
  were you literally crawling around? Did you have a wheelchair? What was, you know, who are your
• 50:57
  friends? What was it like? Yeah, I had a wheelchair. I got a wheelchair when I was about,
• 51:03
  I got my first wheelchair when I was four or five and I threw it in a gully at home because it was
• 51:11
  no gully, it was like a ditch, it was a ditch, yeah, because it was no good, it was no good, like
• 51:18
  it was the biggest wheelchair that I'd ever seen. It's bigger than any wheelchair I've had seen,
• 51:22
  but it was just, I wheelchair, give him a wheelchair and that'll do. And that was not good for
• 51:29
  four or five-year-old kid. I want to be crawling, I want to be moving, I want to feel like I was
• 51:34
  a sibling to my brothers and sisters. I want it to be a neighbor. I wanted to get hands dirty,
• 51:40
  you know, and we had, we lived in a house that wasn't accessible. No, that's terrible. That's a
• 51:49
  funny thing to talk about. The Californian, the American through the Disability Act, wheelchair ramp
• 51:54
  had not yet been installed on every home in Carcourt. Well, mum and dad, they were not,
• 52:01
  my dad was a labourer, my mum was looking after five kids and the ability to make home upgrades
• 52:06
  was just, it just wasn't on the cars. But we had concrete for about 10, maybe 15 metres from
• 52:14
  the front door to the front gate. So that was all that the wheelchair would go to. If I wanted to
• 52:19
  go past that, I crawled and so I crawled. I did, when I got into school, I started to use my wheelchair
• 52:27
  a bit more. The principle, the principle actually did concrete a lot of paths around the school.
• 52:36
  He, in 1985, I was welcomed into Carcourt public at the objections of the Department of Education
• 52:45
  at that point in time. In 1985, again, Australia is every country's own zone journey when it comes
• 52:50
  to disability. But in 1985, I was still meant to be segregated and isolated in special education
• 52:58
  or institutionalisation. The principle, yeah, they would sit down and they would sit down in my
• 53:05
  bed. Exactly the same. You're not allowed to learn, you're not allowed to learn with other kids.
• 53:10
  There was a meeting in my mother and father's kitchen where they wanted to transport me to
• 53:18
  Orange daily for school. And my mother and father couldn't afford to transport me daily
• 53:25
  in their Orange. Our Orange is only about 50 minutes to an hour away, but every single day.
• 53:32
  Like I said, we weren't, we didn't, we were, we were, we were living in two hours around
• 53:39
  trip. Yeah, just waking up. Yeah. So, so that wasn't an option. They offered institutionalisation.
• 53:45
  So I could actually stay there. But my principle on that same day walked into my mum and dad's house
• 53:52
  and he said that my mum and dad needed to ignore that conversation. He would take me into that school.
• 53:59
  He would then concrete parts of me. So I could get around the school. I use, I think that as the,
• 54:06
  the ramp is the artery that got me around the school. Once I got to the point, I crawled.
• 54:12
  That was my capillary. You know, that was the way that I would engage once I got to that space.
• 54:16
  That he cemented that school in the Christmas holidays out of his own money. He rebelled against
• 54:21
  his bosses because he knew it was right. It took them six months to find out that I was actually
• 54:26
  in the school, but that stage I was welcomed and I was a value part of the school. So they're not
• 54:30
  going to, they're not going to take me out. So from there, I was just valued and welcomed
• 54:37
  whatever way I wanted to get around. I would crawl and do the, do the cross country. I would
• 54:44
  did high jump and long jump by just crawling and throwing my body. It was, it was a,
• 54:51
  I grew up in the 80s, but it was probably more in 1950s style of growing up in the, in the story of
• 54:59
  disability. Like there would have been advocates in the US demanding for universal accessibility into,
• 55:05
  you know, into public spaces where, where I was still fallen out of trees and, you know,
• 55:10
  pick and pick. What an amazing principle. I, in general, I will meet the world as I need to,
• 55:24
  to get through it. And I do think that many people with disabilities, we have this ability to
• 55:32
  adjust and adapt because we've had to, like that is just, we've lived in a world that is often
• 55:39
  not made for us. And so it is just adapt or not engage and not engaging is an option.
• 55:47
  So there are, what I believe, there are a lot of lessons that disability can bring to every,
• 55:54
  you know, every room, every space. But I mean, that in particular, I lean into it a big time.
• 56:01
  That principle, that principle could, um, I meant the principle,
• 56:04
  prepare, principle, PAL, P-A-L, but not the principle.
• 56:09
  There you go. There you go.
• 56:13
  I'll take that yourself again. Not the English language with too many, too many,
• 56:18
  what's that called? I think it's called a metonym. Is it, what's that word that sounds like
• 56:22
  another word? Anyway, yeah, no, it's a good principle, but it's, he was also a good principle PAL,
• 56:28
  the blow to, you know, to stand up against the, you know, the institution and go, we're not
• 56:34
  going to, we're not going to ship him off, you know, we're going to find a way to make it,
• 56:37
  to make this work. That, that, to me, that is my aspiration for the way that the way that the
• 56:45
  world gets out of all of the disagreement and strife that we, and misunderstandings that we have,
• 56:52
  that we could find a way. He's not a member of your community. He's, he's used his reason and his
• 56:59
  mind and his empathy and he sat down probably in a quiet moment after everyone's gone home one
• 57:04
  day and he's thought to himself in his principal's office, what do I do here? And he's listened
• 57:10
  closely to his heart and his mind and he's gone, it doesn't matter that I haven't had this life
• 57:16
  experience. I know what the, I know what needs to be done here. And that kind of cross-community
• 57:24
  empathy, that cross-community reason, that kind of standing up for people on the basis of what
• 57:30
  is right and what is logical instead of getting embroiled in tribal warfare, that is sort of what I
• 57:37
  was pointing to us to being an aspirational goal, not to demean the utility of feeling like you're
• 57:43
  in a, in a community, but, you know, he had bugger all to do with your community and he still stepped
• 57:47
  up and did the right thing. Yeah, well, I think the actual problem happens when we do put our flag
• 57:52
  in the ground and say that we are only in this community. You know, that's where, that's where I see
• 57:58
  problems. Like, I'm not just in one community, he is in my community, he, he, he, he is in my family,
• 58:04
  that other part of my family. Like, even in, even in my family, like my literal family, we're a big,
• 58:12
  we're a big family, there's five siblings in mind, but my dad had 10 kids, my dad was one of 10
• 58:18
  kids, they all had big families all around it, so they are in a hundred different communities.
• 58:25
  I reckon that even in my community, we're five kids, we probably vote five different ways,
• 58:29
  but I love them more than anything in the world, but they don't just have to be in my community,
• 58:35
  they don't just have to be, I want them to be in a hundred communities, I hope my family
• 58:39
  might, and I think when we plan our flag and say that I am just in this community right here,
• 58:45
  this is the one-dimensional approach to life that I'm going to take, I think that there is danger
• 58:51
  there, huge amounts of danger there, and that's where we, we need to avoid that, I think.
• 58:58
  It's, it's a homonym, by the way, principal, principal, a word that sounds like another word,
• 59:03
  it just popped into my head. It's not a metonym, it's a homonym. Welcome back to words with Josh,
• 59:09
  where we teach you all of the obscure linguistics. It's just being up myself, that's all it is.
• 59:16
  They're hominemes, they words that sound like other words, but have different meanings.
• 59:23
  Kurt, I don't want to keep you forever, it's delightful to talk to you and I can talk to you all day.
• 59:27
  What, what, what do you, what would you say to people who are listening, either able-bodied people,
• 59:32
  or people who are in whale chairs, or you know, in the spirit that you've just articulated
• 59:38
  of being able to reach across boundaries and try to sort of, you know, a haily shudder, and you
• 59:43
  know, let's just actually, why don't you talk to the person who's listening to this, who's able-bodied,
• 59:46
  who thinks, yeah, that all sounds fantastic. I'm totally on your side. Good on you,
• 59:52
  Paralympics, ra ra ra ra, but at the end of the day, you know, life cuts us all different breaks,
• 59:58
  and if you have the misfortune to be born with special needs, then your life is just by
• 1:00:02
  necessarily going to be tougher than other peoples. Some people are born dumb, some people are born
• 1:00:07
  into poverty, some people are born with genes that make them really fat. We don't bend over
• 1:00:12
  backwards and reshape our entire society's to accommodate each other. You know, life works best
• 1:00:18
  when it's kind of every man from self and you do do what you can to be nice to each other,
• 1:00:21
  but at the end of the day, you know, the chips fall where they may, and then the breaks.
• 1:00:27
  As some people are born as halls, I don't expect to win 100% of people, and I will never try and
• 1:00:38
  convince that person. I will happily go on and live my life, and I will make sure that when I get
• 1:00:44
  in to have this argument in the field of public opinion in the town square, I will say that I believe
• 1:00:51
  that we are a better place when we're looking out for each other. I believe that we are a better
• 1:00:55
  place when every single person gets to buy in to what it is to be in Australia or what it is to
• 1:01:01
  be a functioning valued member of whatever community is over there. And there are going to be people
• 1:01:07
  who disagree with me. I get messages on social media that say that I shouldn't fund a program
• 1:01:16
  that sports disability because your parents didn't abort you. I get that. I'm not going to change
• 1:01:22
  that person's mind, nor do I really want to. Nobody gets 100% of people agreeing with them.
• 1:01:29
  I will happily thank them for their contribution and let them get on their bloody way. In the meantime,
• 1:01:36
  I'm going to turn around to the other 99% of people that I believe are reasonable,
• 1:01:40
  that I believe are caring, that I believe could actually join in and do something good.
• 1:01:46
  The other guy, nice to meet you. What's the easiest and simplest thing that people can do
• 1:01:52
  that the 99% can do? You know what? I think the best thing that you can do when you
• 1:01:58
  is when you see someone that disability, ask them for a coffee, get to know them.
• 1:02:06
  I'll spray some milk off from a coffee robe and ask them to buy you a coffee.
• 1:02:10
  Excuse me. Have you got changed for a coffee?
• 1:02:16
  No one has been sitting here at the moment. The baristas are overcharging so much.
• 1:02:21
  I would just say that bringing people with all variation into your life,
• 1:02:26
  not as a token thing, actually investing the people around you and making it a meaningful
• 1:02:32
  substantial relationships over a long period of time. Don't quirium, don't pepper them with
• 1:02:38
  questions, just invite them into your world, whether it be a co-worker, whether it be a person
• 1:02:43
  that leaves around the corner. I think we've got to go back. If I learn anything from
• 1:02:50
  from COVID, we're going to have real communities again. We're going to have real conversations,
• 1:02:56
  real communities and don't be fearful of disability. Don't slap the kids hand away when they
• 1:03:04
  point at somebody in a chair or somebody with Down syndrome. Talk to them about it.
• 1:03:10
  That's interesting. Let's just touch on that before I let you go, because part of the reason
• 1:03:15
  why people might not offer to buy a coffee from someone who they encounter is this sense of
• 1:03:20
  self-consciousness or awkwardness or they don't want to do the wrong thing. If there were no holds
• 1:03:28
  barred and they were being completely honest, then they might come on that and when they're
• 1:03:32
  having the coffee, they might be like, what's it like having no legs or whatever it is, but
• 1:03:37
  they can't. They can't say that. You don't know whether or not that person doesn't have the
• 1:03:42
  obligation to tell you for the seven millionth time what it's like not to have any legs or whatever
• 1:03:47
  it might be. But the self-consciousness, you know, your asshole puckers up and people get a
• 1:03:52
  little bit sweaty and clammy and they're like, I don't really know how to behave around this person
• 1:03:57
  because I don't want to put my foot in it. I don't want to say the wrong thing. How do you bridge
• 1:04:02
  that? Get to know the person rather than get to know the disability. So get to know the person.
• 1:04:08
  Like you would be sitting down at any other person and I don't mean buy them a coffee and then walk
• 1:04:13
  away. I mean, you know, if there is somebody in your community that has a disability, get to know
• 1:04:18
  them. The disability is secondary. You'll learn more about the disability by never asking about it.
• 1:04:24
  It will just come up. I have never. I have never. And it's really weird coming from within the
• 1:04:30
  community to then to then take a job, say in the media and interview people or even see the
• 1:04:38
  interviews of people with disabilities because I have never sat down with somebody in my team
• 1:04:43
  and asked them what their disability is not in 25 years. Yeah, all the media that I see the first
• 1:04:49
  question is what's your disability? It's very interesting to see that interaction and to see
• 1:05:01
  it be awkward. But I would just say get to know the person and I've got two non-disabled kids and
• 1:05:09
  every time I pick them up at daycare or kindergarten, I will have a press conference with this big
• 1:05:14
  mob of little kids that run around me and go, why are you in a wheelchair? Answer them in a positive
• 1:05:21
  way to make sure that they get comfortable and never feel awkward around disability. We need people
• 1:05:27
  from when they're two, three, four, five, six years old to just look at this thing, ask their question,
• 1:05:33
  be comfortable, move on and learn in a calm and friendly way. I have a friend, one of my good
• 1:05:41
  friends has a congenital birth defect which has one of his limbs be too small, one of his arms
• 1:05:47
  is small. When we first met, it was actually my partner who met him first. Some years later,
• 1:05:56
  he said, why didn't you ever ask me about my arm? My partner didn't really know what to say because
• 1:06:03
  I guess he thought that it would be impolite. The bloke actually found it more impolite that people
• 1:06:09
  really tend not to notice it. He found it like after a while, there's this elephant in the room,
• 1:06:16
  why do I have to bring it up? Are you curious? Why are you pretending not to see it in a way?
• 1:06:25
  Does that contradict your thing about getting to know the person? We're talking about not on
• 1:06:30
  first meeting, but once your friends then just never bringing it up. Again, it's hard to ever speak
• 1:06:37
  when you speak about a group, every individual is going to have their own approach. Like I said,
• 1:06:44
  I have a very unique experience with this building. When you're born with it, it may be different,
• 1:06:49
  should you acquire it through trauma? If I was asked that, why didn't you ever ask me about,
• 1:06:55
  I would just go, never came up. It just didn't come up. My sisters and brothers, they introduce
• 1:07:04
  me to people and they go, and I've seen their friends go, he's in a wheelchair. You didn't tell me
• 1:07:10
  that. I personally find it doesn't come up. I don't know. I don't know. Maybe it's a normality
• 1:07:25
  now that I have around it, that I've experienced so much variation of disability that when I sit
• 1:07:31
  down there, it's just kind of... Well, yeah, I mean, it's not like you sit down with someone and you go,
• 1:07:37
  why are you so fat? Why did you lose your hair if you're talking to someone who's bald? You just
• 1:07:45
  don't. It shouldn't be the first. There shouldn't be the leading thing about them. Kurt, you're a
• 1:07:51
  national treasure. It's lovely to talk to you. Thank you for making time for us.
• 1:07:55
  No problems mate. It's been fun.
• 1:08:02
  Uncomfortable conversations is produced by Stefan Postumer. Follow me, Josh Zeps on Twitter and
• 1:08:07
  Instagram for all the latest. May your day be fruitful, your mind humble, your enemies generous,
• 1:08:14
  and your conversations perfectly, sparklingly, delectably, uncomfortable.