00:00:03
Speaker 1: Hello, and welcome to the I Can't Stand Podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peter, I have cerebral palsy, and I'm your host this week. I'm so excited to introduce you to Mandy McCracken. If you don't know Mandy, she has an extraordinary story. She's a quadruple amputee after recovering from sepsis, and as you can imagine, her life got turned totally upside down and she had no roadmap of how to be a disabled person. So she has created a charity that supports people that have just acquired their disability. Also, we touch on something very close to my heart, and that is what disabled people do in an event of an emergency. If you don't know, I got locked out of my house earlier this year and it really got my mind ticking on what I would do if I didn't have my parents' house as a backup. So, without any further ado, let's get into it.
00:01:26
Speaker 2: Hello everyone, Yes, I'm Manny McCracken. Good ay, gooday. I'm a quadruple amputee. So yeah, I live in Central Victoria and yeah, really nice to come and join you today, Peter. I've watched you from a distance. It's lovely to finally meet you.
00:01:44
Speaker 1: Thank you so much for being here. First and foremost. I really value your work in the disability community. I know you've been in it for a while now, but for those who don't know who you are, maybe do a little bit of introduction of how you became into a pool community.
00:02:02
Speaker 2: So I've been disabled now for twelve years, I think it is.
00:02:07
Speaker 3: So.
00:02:08
Speaker 2: I got sepsis when I was thirty nine years old, and I had no idea what sepsis, was never heard of it beforehand. I went to bed on a Wednesday, and by Friday I was really incredibly sick, and we called an ambulance and I ended up in one of the big Melbourne hospitals and I lost my hands and feet to sepsis. So I became disabled, you know, pretty much overnight, which was quite an extraordinary experience. But here I am, and yeah, so now I've got prosthetic hands, which I've left in the bedroom, and I use a hook when I'm on my computer because it's nice and easy, and I've got two prosthetic legs. So I say to kids that I'm half pirate, half robot.
00:02:53
Speaker 1: As somebody who was born with their disability, I don't know any different, but clearly there's a marked difference between before many before and Mandy during and Mandy after and all the medical trauma that is encompassing with that. Like even those of us who have amazing experience with medical systems, it can be really difficult. But I want to firstly start and talk to you about the amazing charity that you run and that you've started since becoming disabled. Tell us about that.
00:03:27
Speaker 2: So I founded a charity called Get Started, Disabilities Support Australia and it was completely borne out of my frustration. So before I became disabled, I was really busy active mum. I was on all the local committees. I basically couldn't sit still. And then all of a sudden, I have a handsome feet chopped off, and the medical world patted me on the head and passed me the TV remote and sort of said, you know, have a lovely life. And it was like, hang on a tick. You know, I'm not going to just stop and not do stuff just because this has happened to me. And I was really desperate to find other people out there who I could go, right, Okay, what do I do? How does this work? You know what's my next step? And at the time there was nobody. The aim is for anybody who's newly disabled to be able to turn up to our workshops and basically get a crash course in how to be disabled, which I'm talking to you, Peter, like, I know that sounds almost like, I don't know, hypocritical or something like you've been living this your whole life. But I was thirty nine and all of a sudden this just went when and I'm just like, I don't know what I'm meant to do? How does this work?
00:04:52
Speaker 1: Please don't apologize, Like, even though I have had my disability for thirty four years, I still don't know lots of things. You know, none of us have been the age that we are before, and there's new challenges that come up as you get older and society changes with the disability. So and I really want to try and better understand what it is like to literally wake up disabled one day. Did you have a context of what disabled life would be like? Did you know anybody disabled at that point?
00:05:27
Speaker 2: There might have been a mum, another mom who I knew had a son who's you know, was born with a disability. My nephew is down syndrome autistic, So that was my only connection to anyone with disability. But I certainly didn't know any other adults who are living really busy, productive lives who were living with disability. Life doesn't stop just because this has happened, you know, the kids still need to be entertained during school holidays, and so I actually just wanted to to get on the train and take the girls in to see a movie, like something is so simple. But of course i'd never use an electric wheelchair on public transport? How do you do that? And I actually rang up the one and only person who I knew in the neighborhood who was disabled, and she said, I've got no idea because I always drive. I was like, oh my god, how do I do this? Anybody who comes freshly out of hospital or rehab, or they're born with a kid who's got a disability, and they've never done this before. The aim is that gets started is going to be somewhere that they can come and just get there.
00:06:41
Speaker 4: As I said that nuts and bolts, and then when they've got a question they've got someone to call, and you know it may not be that we know the answer, but we'll be able to put you in touch with somebody who might.
00:06:53
Speaker 2: The aim is that it actually comes in through every council. So every local council has gets started to disability program and it get started disability a hub in the neighborhood, so there's always somewhere for someone to just simply turn up on the doorstep and you know, get the information that they need. Our next session that we're doing is about self care and dealing with the grief that comes with this and also the impact it has on your relationships. So like, as I said, I was thirty nine when this happened to me, married, I've got three kids, and all of a sudden, my body is so vastly different, and no one really broach the subject of like, how does this change my relationship with my husband? You know what does that look like? Even my own sort of personal body image, my own self esteem, the way the kids see their mum, you know what does that look like. There's nobody really out there outside of just one on one psychologists that are saying, okay, you've been through a massive change. This is really big for everybody around you. How's everyone dealing with it? How are you dealing with it? Chatting to a occupational therapist lecturer at ACU just the other day about, you know, how do we broach the subject of sex to the older generations who have been through later in life disability, Like should we go there? Do we want to have this conversation? And she's like, yeah, yeah, they're desperate for this info. They're desperate for someone just to simply ask, you know, how's your sex life now that this has happened to you and nobody's really doing it? So wish me luck. That's going to be a fun one.
00:08:50
Speaker 1: I wish you luck. And you know, this brings to mind and not to get too political, but there was a piece in the media about the fact that people were using sex workers with their NDIAS funding, and I think there was a big gap missing in those sort of quote unquote scandalous headlines. That sex workers and sex support workers can be there to help people understand how to have sex again after disability and be taught how to have pleasure for them. Then I think that's a really important educational piece that every person deserves.
00:09:31
Speaker 2: Yeah, and there's a whole heap of products out there on the market that you can access that can help you do this stuff. So but you know, you don't know about it until somebody tells you that it's there.
00:09:41
Speaker 1: And I find it so fascinating that nobody spoke to you about how to navigate your new identity in and around your relationships with your family. You know, it's a bit like back in the day when people had mental health, people just ignored it and wouldn't talk about it because they didn't know how to respond to people's answers if they said they weren't okay. And that really reminds me of your story.
00:10:09
Speaker 2: Yeah, a few years ago I put together a workshop for quadruple amputees. We're a fairly unique little collection of people, and I included in our conversation a time for us to talk about this about you know what difference our situation puts on us, in certainly in the bedroom and then with our relationships as well. We got the disabled people in the room away from their partners so that we could actually have open conversations without them listening. And at the same time, we got the partners, you know, the husband's wives, girlfriend, boyfriends, whatever together to go and have some time out so that they could have a conversation without us in the room. And it was it was really well received. Everyone really appreciated having that chat. But I think the real benefit is just allowing people who are living through it to go, you know, what's it been like for you, like, explain, explain your experience, and you can just throw around some ideas of what worked, what didn't work, and you know how it played out. We as disabled people, we're all chatting about you know, what's working, what's not working, you know, prosthesis and stuff that we use. But we get together every sort of six months twelve months, and we bring our family along and my daughters. One day, they were playing cards with other teenagers whose parents are all quadripl amputees, and their conversation just eventually turned into a chance for them to share what they went through, you know. And this was like eight years ago that they had their parents in ICU getting their limbs chopped off, and the room, you know, there were probably about four kids who'd all had that experience as a young eight year old and now they're teenagers and they were all it was the first time that they actually had a chance to say, this is what happened to me. You know, I was a complete mess because of this situation, and there was a kid who's the same age who'd been through exactly the same experience. They came away from it so supported. It's making Metery so supported by actually having someone who'd been through the same situation, because you know, it's such a unique experience to have your parent had their hands and favorite chopped off. And now they're massively brilliant friends that are online with each other quite religiously almost daily at the moment to know, just chat about life, which has been fantastic.
00:13:08
Speaker 1: Oh that makes me so happy to hear, because it is true, unless somebody's been through almost the exact same situation, people can try and understand me empathetic, but there's always going to be a lack of knowledge and a lack of understanding despite people's best efforts. So I'm so pleased your girls have found people that can help and support them and help them process because of course this happened to you, but it also happened to your family.
00:13:45
Speaker 2: Oh massively. So yeah, and now we go away on holidays with these other families and it's quite hilarious because you know, Mum and dad, we're all sitting there with body parts like sort of around the place because we also take them on and off our procesis and stuff, and the kids all the responsibility of helping out the adult. So you know, we've now got this collection of teenagers that know how to put on body parts on their parents. And yeah, very unique experience for these kids. And it's so nice to be able to go away with other families and you know, have have that as a norm that there's literally body parts sitting on the kitchen bench and that's okay when you walk in the door because these kids just they get it, and you know, to have other kids that are dealing with exactly the same things so so helpful.
00:14:40
Speaker 1: Yeah, that's a unique skill to put on their resumes when they start work, that's for sure. Mandy.
00:14:47
Speaker 2: Yes, I know how to put a person together. Actually, I have to tell this fun story. My youngest daughter is studying forensics at school and she has to set up a crime I'm seeing and take photos and so I'm like, oh.
00:15:05
Speaker 5: Come on, surely you're going to do this and she's like, oh, I think mum, it's going to be a little bit much. I'm like, come on, can we please get the tomato sauce out and take some photos.
00:15:15
Speaker 2: You've got to do it.
00:15:17
Speaker 1: Well, that's an interesting segue to my question, but I'm going to use it anyway. So with crime scenes goes into my other question, which was going to be about emergencies. As somebody who lives in the country, and I know this too, you constantly think about bushfires, flooding. You know, what do you do when you're a disabled person in that situation? Do you have an emergency plan for yourself? And how does your disability impact that?
00:15:50
Speaker 2: The answer first answer is no, I do not have an emergency plan for myself. And how does my disability impact that? Enormously is the answer. In my previous life, I was living where I live when the Black Saturday bushfires came along, and I was able bodied back then, so I literally jumped in the car, grabbed the kids, threw everything in the car, and ran away from the fire. I can't do that anymore. There's no way I can do that. If I'm on my legs for the day, I can certainly jump in the car and leave, But if I'm off my legs for the day, I can't leave. I can't get out of my house at all. I mean, i can drive my little electric wheelchair down the road, but I'm on a five k dirt road that's a dead end. So I've probably quite honestly put myself in the worst case scenario being a disabled person. I live on a hill surrounded by trees and I'm at the end of a dirt road. I've been in conversation putting this program together for our Disability Support groupversation with counsel and in conversation with emergency management. And also I've been chatting to University of Sydney Disability Research and Policy Department, and they said, being disabled and being in an emergency, your risk of dying is astronomical, Like it's just you just you know, the numbers for people dying with disability is huge, and it's even just house fires. You're right up there, and they are really stuck on how to get in touch with disabled people and say, right, you guys have got to think about this. What are you going to do? How's it going to play out? And what they really want us to do is make a plan, you know, write it down, actually work out what we need to take with us. Who's going to get it, how are we going to get out in a hurry, where are we going to go, and what's going to be there when we get there, and what do we need? That's what I came to you, Peter, because I saw your gate story and like I watched your video and it was just like, of course, you know, it doesn't need to be a bushfire, and it doesn't need to be a flood. It can be something as simple as your gate not working and all of a sudden You're like, what am I going to do. I've got a little buggy. I've got this little like a giant motorbike thing that I can drive, and I'm in my paddock and we've got a lot of building rubble around And so I was out there the other day picking up the rubbish and of course I fell over and I landed in a BlackBerry bush, which is neither here nor there. But that was fun. But I actually put my mob offline in my pocket because I knew this was going to happen. Like I knew I was going to fall over, it was a given. And of course once I'm I've fallen over, I can't get up at all. So I magically pulled out my phone and I rang my daughter who was in my house, and I'm like, can you come and save me? Please? And so she ran down the hill and she picked me up and she put me back. Just working those scenarios out so that when it happens, you're not a complete mess, and you've got the backup of even just having a phone in your pocket so that you can call someone. So watching you telling your stories on your social media about what has happened to you, and you know the mental process that you're going through, and like I see your angst, Like you are so beautiful at showing the emotional challenge of what that is. Like, all power to you for sharing that emotional journey. And you know, like I believe your parents have gone away, and obviously they're the ones that you rely on, just even just for your friends to be able to see how how challenging that is for you, so that they are there for you. And it was really interesting when I told my sister in law that I fell over the paddock and landed in BlackBerry Bush, she grounded me. She's like, why were you out there? Why were you out there by yourself? Doing that. I'm like, because I wanted to be you know, I want to be out there doing things and I don't want this to stop me from doing.
00:20:23
Speaker 1: Stuff quite right too, you have every right to do what you want to do. And you know, we can't wrap ourselves in cotton pool as much as we try. For those who don't watch my Instagram to give people a bit of context, my gate across my house closed of its own accord when I was out for dinner one night and I came home and then it wouldn't open, so it didn't respond to anything that I was doing. Thankfully, I have a home that's adapted, which is my parents' home that I could go to. But it was still midnight, in the middle of the night and they were away, and I called my mum driving to their house, and I just cried, and I said, what am I going to do when you die?
00:21:10
Speaker 2: Like?
00:21:11
Speaker 1: What am I going to do when it's not a second house there? Because it's not like you can go to a hotel when you have a physical disability. I can't get myself onto the bed without a hoist or go to a toilet, you know, So what do you do? And I was speaking to a few of my followers, and they said, you probably have to go to a hospital and admit yourself.
00:21:37
Speaker 2: Yeah. Yeah, Well, I've been chatting to counsel about how to play this out because of because where we live, right in the middle of the bushfire neighborhood. And I said to them, you know, what, what are you going to do if you have to evacuate somebody in an electric wheelchair, like a permanent electric wheelchair user And they don't know, they don't know, And I said, well, where do you take them? And they're like, oh, maybe we go to a nursing home because they'll have a hoist, Like well, okay, yeah, okay, that works in an emergency, but you know, somebody like yourself, you don't want to be carted off to a nursing a home in the middle of the night after you've had a few too many martinis. At least these these community groups like Council Emergency Services, you know, we're beginning to chat to them about what does this look like? But it would be fantastic to have people like yourself come up with a bit of a solution, like, you know, is it that we know of two or three hotel rooms in through the neighborhood that have hoists and can deal with these people's you know, needs that they have. Like if you knew that there was a Sheraton, hopefully it's a lovely hotel that has you know, a hooys sitting there ready to go that you can just turn up to. Or there's somebody that you can call at two o'clock in the morning and they'll help you workshop it and work it out. That's what we need to set up. And you know, it needs to be a neighborhood by neighborhood solution.
00:23:10
Speaker 1: Or at least a city by city you know, even to just have an SDA house that you know that there's an empty room that if you're in an emergency you can go to. But that's a scary thing about living with a disability. If you or I called triple zero, I'm pretty sure no one there would know what to do.
00:23:33
Speaker 2: So would be really good if all the service providers could have some sort of like a vacancy database of what is available for last minute help, so that you could ring up a central phone line and go, okay, well there's you know, there's Urella, there's Scope, there's livability or you know, all the different agencies and you could go right, well, there's a vacant room with nursing stuff that are actually in the building. They're already there that could help you out in two o'clock in the morning. Emergency. That's a great idea, Peter, we should talk.
00:24:12
Speaker 1: This is a very unusual waiter in this podcast, but I'm going to say to the listeners watch this space because I really want to make sure that we try to make emergency services associations realize that this is a real need.
00:24:30
Speaker 3: Well, Peter, I would love you to come with me on this ride and help me make it really front and center and make it very much the responsibility of government and emergency services to be able to cater for people like us and really throw it in their lap and say, okay, guys, what are you going to do?
00:24:49
Speaker 2: So yeah, please come along. This should be a lot of fun. I'm looking forward to it. Hooray.
00:24:59
Speaker 1: Thank you for listening to this week's episode. I really hope you enjoyed it. If you did, can you leave a rating and review? I would really appreciate it. Don't forget. You can always send me an email I can't stand podcast at gmail dot com or You can follow me over on Instagram. My handle is at Peterhook spelt p e t a h o ok. Thanks so much and until next week, have a good one guys bye. I would like to respectfully acknowledge they were wondery and bunn wrong people of the Call and nation of which I record the podcast today, and I pay my respects to both elders past and present, along with and especially to those in the First Nation's communities who are disabled themselves.
Speaker 1: Hello, and welcome to the I Can't Stand Podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peter, I have cerebral palsy, and I'm your host this week. I'm so excited to introduce you to Mandy McCracken. If you don't know Mandy, she has an extraordinary story. She's a quadruple amputee after recovering from sepsis, and as you can imagine, her life got turned totally upside down and she had no roadmap of how to be a disabled person. So she has created a charity that supports people that have just acquired their disability. Also, we touch on something very close to my heart, and that is what disabled people do in an event of an emergency. If you don't know, I got locked out of my house earlier this year and it really got my mind ticking on what I would do if I didn't have my parents' house as a backup. So, without any further ado, let's get into it.
00:01:26
Speaker 2: Hello everyone, Yes, I'm Manny McCracken. Good ay, gooday. I'm a quadruple amputee. So yeah, I live in Central Victoria and yeah, really nice to come and join you today, Peter. I've watched you from a distance. It's lovely to finally meet you.
00:01:44
Speaker 1: Thank you so much for being here. First and foremost. I really value your work in the disability community. I know you've been in it for a while now, but for those who don't know who you are, maybe do a little bit of introduction of how you became into a pool community.
00:02:02
Speaker 2: So I've been disabled now for twelve years, I think it is.
00:02:07
Speaker 3: So.
00:02:08
Speaker 2: I got sepsis when I was thirty nine years old, and I had no idea what sepsis, was never heard of it beforehand. I went to bed on a Wednesday, and by Friday I was really incredibly sick, and we called an ambulance and I ended up in one of the big Melbourne hospitals and I lost my hands and feet to sepsis. So I became disabled, you know, pretty much overnight, which was quite an extraordinary experience. But here I am, and yeah, so now I've got prosthetic hands, which I've left in the bedroom, and I use a hook when I'm on my computer because it's nice and easy, and I've got two prosthetic legs. So I say to kids that I'm half pirate, half robot.
00:02:53
Speaker 1: As somebody who was born with their disability, I don't know any different, but clearly there's a marked difference between before many before and Mandy during and Mandy after and all the medical trauma that is encompassing with that. Like even those of us who have amazing experience with medical systems, it can be really difficult. But I want to firstly start and talk to you about the amazing charity that you run and that you've started since becoming disabled. Tell us about that.
00:03:27
Speaker 2: So I founded a charity called Get Started, Disabilities Support Australia and it was completely borne out of my frustration. So before I became disabled, I was really busy active mum. I was on all the local committees. I basically couldn't sit still. And then all of a sudden, I have a handsome feet chopped off, and the medical world patted me on the head and passed me the TV remote and sort of said, you know, have a lovely life. And it was like, hang on a tick. You know, I'm not going to just stop and not do stuff just because this has happened to me. And I was really desperate to find other people out there who I could go, right, Okay, what do I do? How does this work? You know what's my next step? And at the time there was nobody. The aim is for anybody who's newly disabled to be able to turn up to our workshops and basically get a crash course in how to be disabled, which I'm talking to you, Peter, like, I know that sounds almost like, I don't know, hypocritical or something like you've been living this your whole life. But I was thirty nine and all of a sudden this just went when and I'm just like, I don't know what I'm meant to do? How does this work?
00:04:52
Speaker 1: Please don't apologize, Like, even though I have had my disability for thirty four years, I still don't know lots of things. You know, none of us have been the age that we are before, and there's new challenges that come up as you get older and society changes with the disability. So and I really want to try and better understand what it is like to literally wake up disabled one day. Did you have a context of what disabled life would be like? Did you know anybody disabled at that point?
00:05:27
Speaker 2: There might have been a mum, another mom who I knew had a son who's you know, was born with a disability. My nephew is down syndrome autistic, So that was my only connection to anyone with disability. But I certainly didn't know any other adults who are living really busy, productive lives who were living with disability. Life doesn't stop just because this has happened, you know, the kids still need to be entertained during school holidays, and so I actually just wanted to to get on the train and take the girls in to see a movie, like something is so simple. But of course i'd never use an electric wheelchair on public transport? How do you do that? And I actually rang up the one and only person who I knew in the neighborhood who was disabled, and she said, I've got no idea because I always drive. I was like, oh my god, how do I do this? Anybody who comes freshly out of hospital or rehab, or they're born with a kid who's got a disability, and they've never done this before. The aim is that gets started is going to be somewhere that they can come and just get there.
00:06:41
Speaker 4: As I said that nuts and bolts, and then when they've got a question they've got someone to call, and you know it may not be that we know the answer, but we'll be able to put you in touch with somebody who might.
00:06:53
Speaker 2: The aim is that it actually comes in through every council. So every local council has gets started to disability program and it get started disability a hub in the neighborhood, so there's always somewhere for someone to just simply turn up on the doorstep and you know, get the information that they need. Our next session that we're doing is about self care and dealing with the grief that comes with this and also the impact it has on your relationships. So like, as I said, I was thirty nine when this happened to me, married, I've got three kids, and all of a sudden, my body is so vastly different, and no one really broach the subject of like, how does this change my relationship with my husband? You know what does that look like? Even my own sort of personal body image, my own self esteem, the way the kids see their mum, you know what does that look like. There's nobody really out there outside of just one on one psychologists that are saying, okay, you've been through a massive change. This is really big for everybody around you. How's everyone dealing with it? How are you dealing with it? Chatting to a occupational therapist lecturer at ACU just the other day about, you know, how do we broach the subject of sex to the older generations who have been through later in life disability, Like should we go there? Do we want to have this conversation? And she's like, yeah, yeah, they're desperate for this info. They're desperate for someone just to simply ask, you know, how's your sex life now that this has happened to you and nobody's really doing it? So wish me luck. That's going to be a fun one.
00:08:50
Speaker 1: I wish you luck. And you know, this brings to mind and not to get too political, but there was a piece in the media about the fact that people were using sex workers with their NDIAS funding, and I think there was a big gap missing in those sort of quote unquote scandalous headlines. That sex workers and sex support workers can be there to help people understand how to have sex again after disability and be taught how to have pleasure for them. Then I think that's a really important educational piece that every person deserves.
00:09:31
Speaker 2: Yeah, and there's a whole heap of products out there on the market that you can access that can help you do this stuff. So but you know, you don't know about it until somebody tells you that it's there.
00:09:41
Speaker 1: And I find it so fascinating that nobody spoke to you about how to navigate your new identity in and around your relationships with your family. You know, it's a bit like back in the day when people had mental health, people just ignored it and wouldn't talk about it because they didn't know how to respond to people's answers if they said they weren't okay. And that really reminds me of your story.
00:10:09
Speaker 2: Yeah, a few years ago I put together a workshop for quadruple amputees. We're a fairly unique little collection of people, and I included in our conversation a time for us to talk about this about you know what difference our situation puts on us, in certainly in the bedroom and then with our relationships as well. We got the disabled people in the room away from their partners so that we could actually have open conversations without them listening. And at the same time, we got the partners, you know, the husband's wives, girlfriend, boyfriends, whatever together to go and have some time out so that they could have a conversation without us in the room. And it was it was really well received. Everyone really appreciated having that chat. But I think the real benefit is just allowing people who are living through it to go, you know, what's it been like for you, like, explain, explain your experience, and you can just throw around some ideas of what worked, what didn't work, and you know how it played out. We as disabled people, we're all chatting about you know, what's working, what's not working, you know, prosthesis and stuff that we use. But we get together every sort of six months twelve months, and we bring our family along and my daughters. One day, they were playing cards with other teenagers whose parents are all quadripl amputees, and their conversation just eventually turned into a chance for them to share what they went through, you know. And this was like eight years ago that they had their parents in ICU getting their limbs chopped off, and the room, you know, there were probably about four kids who'd all had that experience as a young eight year old and now they're teenagers and they were all it was the first time that they actually had a chance to say, this is what happened to me. You know, I was a complete mess because of this situation, and there was a kid who's the same age who'd been through exactly the same experience. They came away from it so supported. It's making Metery so supported by actually having someone who'd been through the same situation, because you know, it's such a unique experience to have your parent had their hands and favorite chopped off. And now they're massively brilliant friends that are online with each other quite religiously almost daily at the moment to know, just chat about life, which has been fantastic.
00:13:08
Speaker 1: Oh that makes me so happy to hear, because it is true, unless somebody's been through almost the exact same situation, people can try and understand me empathetic, but there's always going to be a lack of knowledge and a lack of understanding despite people's best efforts. So I'm so pleased your girls have found people that can help and support them and help them process because of course this happened to you, but it also happened to your family.
00:13:45
Speaker 2: Oh massively. So yeah, and now we go away on holidays with these other families and it's quite hilarious because you know, Mum and dad, we're all sitting there with body parts like sort of around the place because we also take them on and off our procesis and stuff, and the kids all the responsibility of helping out the adult. So you know, we've now got this collection of teenagers that know how to put on body parts on their parents. And yeah, very unique experience for these kids. And it's so nice to be able to go away with other families and you know, have have that as a norm that there's literally body parts sitting on the kitchen bench and that's okay when you walk in the door because these kids just they get it, and you know, to have other kids that are dealing with exactly the same things so so helpful.
00:14:40
Speaker 1: Yeah, that's a unique skill to put on their resumes when they start work, that's for sure. Mandy.
00:14:47
Speaker 2: Yes, I know how to put a person together. Actually, I have to tell this fun story. My youngest daughter is studying forensics at school and she has to set up a crime I'm seeing and take photos and so I'm like, oh.
00:15:05
Speaker 5: Come on, surely you're going to do this and she's like, oh, I think mum, it's going to be a little bit much. I'm like, come on, can we please get the tomato sauce out and take some photos.
00:15:15
Speaker 2: You've got to do it.
00:15:17
Speaker 1: Well, that's an interesting segue to my question, but I'm going to use it anyway. So with crime scenes goes into my other question, which was going to be about emergencies. As somebody who lives in the country, and I know this too, you constantly think about bushfires, flooding. You know, what do you do when you're a disabled person in that situation? Do you have an emergency plan for yourself? And how does your disability impact that?
00:15:50
Speaker 2: The answer first answer is no, I do not have an emergency plan for myself. And how does my disability impact that? Enormously is the answer. In my previous life, I was living where I live when the Black Saturday bushfires came along, and I was able bodied back then, so I literally jumped in the car, grabbed the kids, threw everything in the car, and ran away from the fire. I can't do that anymore. There's no way I can do that. If I'm on my legs for the day, I can certainly jump in the car and leave, But if I'm off my legs for the day, I can't leave. I can't get out of my house at all. I mean, i can drive my little electric wheelchair down the road, but I'm on a five k dirt road that's a dead end. So I've probably quite honestly put myself in the worst case scenario being a disabled person. I live on a hill surrounded by trees and I'm at the end of a dirt road. I've been in conversation putting this program together for our Disability Support groupversation with counsel and in conversation with emergency management. And also I've been chatting to University of Sydney Disability Research and Policy Department, and they said, being disabled and being in an emergency, your risk of dying is astronomical, Like it's just you just you know, the numbers for people dying with disability is huge, and it's even just house fires. You're right up there, and they are really stuck on how to get in touch with disabled people and say, right, you guys have got to think about this. What are you going to do? How's it going to play out? And what they really want us to do is make a plan, you know, write it down, actually work out what we need to take with us. Who's going to get it, how are we going to get out in a hurry, where are we going to go, and what's going to be there when we get there, and what do we need? That's what I came to you, Peter, because I saw your gate story and like I watched your video and it was just like, of course, you know, it doesn't need to be a bushfire, and it doesn't need to be a flood. It can be something as simple as your gate not working and all of a sudden You're like, what am I going to do. I've got a little buggy. I've got this little like a giant motorbike thing that I can drive, and I'm in my paddock and we've got a lot of building rubble around And so I was out there the other day picking up the rubbish and of course I fell over and I landed in a BlackBerry bush, which is neither here nor there. But that was fun. But I actually put my mob offline in my pocket because I knew this was going to happen. Like I knew I was going to fall over, it was a given. And of course once I'm I've fallen over, I can't get up at all. So I magically pulled out my phone and I rang my daughter who was in my house, and I'm like, can you come and save me? Please? And so she ran down the hill and she picked me up and she put me back. Just working those scenarios out so that when it happens, you're not a complete mess, and you've got the backup of even just having a phone in your pocket so that you can call someone. So watching you telling your stories on your social media about what has happened to you, and you know the mental process that you're going through, and like I see your angst, Like you are so beautiful at showing the emotional challenge of what that is. Like, all power to you for sharing that emotional journey. And you know, like I believe your parents have gone away, and obviously they're the ones that you rely on, just even just for your friends to be able to see how how challenging that is for you, so that they are there for you. And it was really interesting when I told my sister in law that I fell over the paddock and landed in BlackBerry Bush, she grounded me. She's like, why were you out there? Why were you out there by yourself? Doing that. I'm like, because I wanted to be you know, I want to be out there doing things and I don't want this to stop me from doing.
00:20:23
Speaker 1: Stuff quite right too, you have every right to do what you want to do. And you know, we can't wrap ourselves in cotton pool as much as we try. For those who don't watch my Instagram to give people a bit of context, my gate across my house closed of its own accord when I was out for dinner one night and I came home and then it wouldn't open, so it didn't respond to anything that I was doing. Thankfully, I have a home that's adapted, which is my parents' home that I could go to. But it was still midnight, in the middle of the night and they were away, and I called my mum driving to their house, and I just cried, and I said, what am I going to do when you die?
00:21:10
Speaker 2: Like?
00:21:11
Speaker 1: What am I going to do when it's not a second house there? Because it's not like you can go to a hotel when you have a physical disability. I can't get myself onto the bed without a hoist or go to a toilet, you know, So what do you do? And I was speaking to a few of my followers, and they said, you probably have to go to a hospital and admit yourself.
00:21:37
Speaker 2: Yeah. Yeah, Well, I've been chatting to counsel about how to play this out because of because where we live, right in the middle of the bushfire neighborhood. And I said to them, you know, what, what are you going to do if you have to evacuate somebody in an electric wheelchair, like a permanent electric wheelchair user And they don't know, they don't know, And I said, well, where do you take them? And they're like, oh, maybe we go to a nursing home because they'll have a hoist, Like well, okay, yeah, okay, that works in an emergency, but you know, somebody like yourself, you don't want to be carted off to a nursing a home in the middle of the night after you've had a few too many martinis. At least these these community groups like Council Emergency Services, you know, we're beginning to chat to them about what does this look like? But it would be fantastic to have people like yourself come up with a bit of a solution, like, you know, is it that we know of two or three hotel rooms in through the neighborhood that have hoists and can deal with these people's you know, needs that they have. Like if you knew that there was a Sheraton, hopefully it's a lovely hotel that has you know, a hooys sitting there ready to go that you can just turn up to. Or there's somebody that you can call at two o'clock in the morning and they'll help you workshop it and work it out. That's what we need to set up. And you know, it needs to be a neighborhood by neighborhood solution.
00:23:10
Speaker 1: Or at least a city by city you know, even to just have an SDA house that you know that there's an empty room that if you're in an emergency you can go to. But that's a scary thing about living with a disability. If you or I called triple zero, I'm pretty sure no one there would know what to do.
00:23:33
Speaker 2: So would be really good if all the service providers could have some sort of like a vacancy database of what is available for last minute help, so that you could ring up a central phone line and go, okay, well there's you know, there's Urella, there's Scope, there's livability or you know, all the different agencies and you could go right, well, there's a vacant room with nursing stuff that are actually in the building. They're already there that could help you out in two o'clock in the morning. Emergency. That's a great idea, Peter, we should talk.
00:24:12
Speaker 1: This is a very unusual waiter in this podcast, but I'm going to say to the listeners watch this space because I really want to make sure that we try to make emergency services associations realize that this is a real need.
00:24:30
Speaker 3: Well, Peter, I would love you to come with me on this ride and help me make it really front and center and make it very much the responsibility of government and emergency services to be able to cater for people like us and really throw it in their lap and say, okay, guys, what are you going to do?
00:24:49
Speaker 2: So yeah, please come along. This should be a lot of fun. I'm looking forward to it. Hooray.
00:24:59
Speaker 1: Thank you for listening to this week's episode. I really hope you enjoyed it. If you did, can you leave a rating and review? I would really appreciate it. Don't forget. You can always send me an email I can't stand podcast at gmail dot com or You can follow me over on Instagram. My handle is at Peterhook spelt p e t a h o ok. Thanks so much and until next week, have a good one guys bye. I would like to respectfully acknowledge they were wondery and bunn wrong people of the Call and nation of which I record the podcast today, and I pay my respects to both elders past and present, along with and especially to those in the First Nation's communities who are disabled themselves.
