Twelve years ago, Mandy McCracken’s life changed overnight, leaving her with limited guidance on how to navigate her new reality as a disabled person. Now, through Get Started Disability Support Australia, Mandy is on a mission to help others who have just acquired a disability, providing the practical advice and support she wishes she had.
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Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode transcript:
Peta [00:00:02] 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 Peta. 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 the 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.
Mandy [00:01:26] Hello, everyone. Yes, I'm Mandy McCracken. G'day. I'm a quadruple amputee, so yeah, I live in central Victoria. And, yeah, really nice to come and join you today, Peta. I've watched you from a distance. It's lovely to finally meet you.
Peta [00:01:44] 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 and maybe do a little bit of introduction of how you became you 12 beautiful community.
Mandy [00:02:01] So I've been disabled now for 12 years. I think it is. So I got sepsis when I was 39 years old and I had no idea what sepsis was. Never heard of it before. Had. 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 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. So it's less messy and I've got two prosthetic legs. So I say to kids that I'm half part half robot.
Peta [00:02:53] As somebody who was born with a disability, I don't know any different. But clearly there's a marked difference between before many before and many during and 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've that you run and that you've started since becoming disabled. Tell us about that.
Mandy [00:03:27] So I shouted a charity called Get Started Disability Support Australia, and it was completely born out of my frustration. So before I became disabled, I was really busy, active mum. I was on all the local committees and basically couldn't sit still. And then all of a sudden I have had to speak chopped off. And they, the medical world had a knee on the head and pass me the TV remotes and sort of said, you know, have a lovely life. And I was like, I'm going to take 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, okay, what do I do? How does this work? What you know what? 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 like. I know that sounds almost like, I don't know, hypocritical or something. Like if you've been living this your whole life. But I was 39 and all of a sudden was just like, when? And I'm just like, I don't know what I'm meant to do. How does this work?
Peta [00:04:52] Please don't apologise. Like, even though I have had my disability for 34 years, I still don't know lots of things, you know? And 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 that I understand what it is like to wake 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?
Mandy [00:05:26] There might have been a mum, another mum who I knew had a son who was, you know, was born with a disability. My my nephew is Down's syndrome autistic. So that was my only connection to anyone with disability. But I certainly didn't know any other adults who were living really busy, productive lives who were living with disability. Life doesn't stop just because this happens. The kids still need to be entertained during school holidays. And so I actually just wanted to get on the train and take the girls in to see a movie. Like something 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 neighbourhood who was disabled. And she said, I've got no idea because I always draw it. I thought, my God, how do I do this? Anybody who comes is 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 images that get started is going to be somewhere that they can come and just get, as I said, the nuts and bolts. And then when they've got a question, they've got someone to call on. 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. The aim is that it actually comes in through every council. So every local council has a get started disability programme and a get started disability hub in the neighbourhood. So there's always some way 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 39 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 broached 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 sustaining the way the kids see their mom. 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? I was chatting to a occupational therapist lecturer at ICU 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. The desperate for someone just to simply ask has has 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.
Peta [00:08:50] I wish you good 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 NDIS 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 a disability and be taught how to have pleasure for them. And I think that's a really important educational piece that every person deserves.
Mandy [00:09:31] Yep. 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.
Peta [00:09:41] 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.
Mandy [00:10:09] 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 paths so that we could actually have open conversations without them listening. And at the same time, we got the partners, you know, the husbands, wives, girlfriend, boyfriends, whatever, together to go and have some time out so they could have a conversation with 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 in. What's it been like for you? Explain. Explain your experience and you can just throw around some ideas of what worked, what didn't work and how it played out. We as disabled people, we're all chatting about what's working, what's not working, you know, prosthesis and stuff that we use. But we get together every six months, 12 months, and we bring our family along. And my daughters one day were playing cards with other teenagers whose parents are real cultured lampshades. 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, you know, young eight year old. And now they're teenagers. And now we were 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 was the same age who'd been through exactly the same experience. They came away from it. So supportive. It's making me teary, 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 parents have their hands and say you're chopped off and now they're massively brilliant friends that are on align with each other quite religiously, almost daily at the moment to just chat about life, which is fantastic.
Peta [00:13:09] That makes me so happy to hear. Because it is true. Unless somebody has been through almost the exact same situation, people can try and understand to be 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 your girls have fed people that can help and support them and help you process because of course, this happened to you, but it also happened to your family.
Mandy [00:13:45] 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 were sitting there with body parts like sort of around the place because we all sort of take them on and off and prostheses and stuff, and the kids all share the responsibility of helping out the adults. So, you know, we've now got this collection of teenagers that know how to put on body parts on their parents. And it's very unique experience for these kids. And it's so nice to be able to go away with other families and, you know, have had that as a norm, that there's literally a body part sitting on the kitchen bench. And that's okay when you walk in the door because these kids just they get it. And to have other kids that are dealing with exactly the same thing is so, so helpful.
Peta [00:14:40] Yeah, that's a unique skill to put on their resumes when they start work, that's for sure.
Mandy [00:14:47] Yes, I know how to put a person together. If I had to choose one story. My. My youngest daughter is studying forensics at school, and she she has to set up a crime scene and take photos. And so I'm like, come on, surely you're going to do this. And she's like, I think, Mom, it's going to be a little bit much. And what? Come on, please get in tomorrow and take some photos. You've got to do it.
Peta [00:15:17] Well, that's an interesting segway to my question, but I'm going to use it anyway. So with crime scenes, because into my other question, which was going to be about emergencies, as somebody who lives in the country and I know these two, 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?
Mandy [00:15:50] 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. I if 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 A5K dirt road that's a dead end to I've probably quite honestly put myself in the worst case scenario, being a disabled person. I live on a 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 group and in conversation with council 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 has 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, 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 great story and I watched your video, and it was just like, of course, you know, it doesn't need to be a bushfire and doesn't need to be a flood. It can be something as simple as you got it not working and all of a sudden you're like, What are we 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 rubber 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 BlackBerry Bush, which is neither here nor there. But that was fun. But I actually put my mobile phone in my pocket because I knew this was going to happen. Like, I knew I was going to fall and it was a given. And of course, once I'm a fool and 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 inside of 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 back up 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 I 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 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 in the paddock and landed a BlackBerry bush. She grabbed 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 stuff.
Peta [00:20:24] Quite right too. You have every right to do what you want to do. And you know, we can't wrap ourselves in cotton wool 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 close to 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 adapted, which is my parent's home that I could go to, but it was still midnight in the middle of the night. No way. And I called my mom driving to their house and I just cried. And I said, What am I going to do when you die? Like, what am I going to do when there's not a second half that? Because it's not like you can go to a hotel when you have a physical disability. I called my cell phone to the bed with a request to go to the 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.
Mandy [00:21:37] Yeah. Yeah. Well, I've been chatting to council about how to play this out because, of course, we live right in the middle of the bushfire neighbourhood. And I said to them, you know what, what are you going to do if you have to evacuate somebody in 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, maybe we go to a nursing home because they'll have a hoist. Like, 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 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 2 or 3 hotel rooms in through the neighbourhood that have hoists and can deal with these people's, you know, needs that they have? Like if you knew that there was the Sheraton, hopefully it's a lovely hotel that has, you know, a hoist sitting there ready to go that you can just turn out to, there's somebody that you can call at 2:00 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 neighbourhood by neighbourhood solution.
Peta [00:23:10] Or at least a CD by CD, you know, even even to just have an SGA house that, you know, that is an empty room, that if you're an emergency, you can go to. But that's the scary thing about living with a disability, if you will. I called 000. I'm pretty sure no one there would know what to do.
Mandy [00:23:33] So it 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 the central phone line and go, okay, well there's, you know, this umbrella, this scope, this liveability, you know, all the different agencies. And you could go, right, Well, there's a vacant room with nursing staff that are actually in the building. They're already there that could help you out in a 2:00 in the morning emergency. That's that's a great idea. Peter, we should talk.
Peta [00:24:11] And this is a very unusual way to end 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 realise that this is a real need.
Mandy [00:24:30] Well, Peter, I would love for you to come with me on this ride and help me make it really front and centre and make it very much the responsibility of government and emergency services to be able to kind of people like us and really throw it in their lap and say, okay guys, what are you going to do? So yeah, please come along. This should be a lot of fun. I'm looking forward to it. Hooray.
Peta [00:24:59] Thank you for listening to this week's episode. I really hope you enjoyed it. If you did, can you leave a writing in review? I would really appreciate it. Don't forget, you can always send me an email icantstandpodcast@gmail.com. Or you can follow me over on Instagram. My handle is at Peta Hooke, spelt P.E.T.A.H.O.O.K.E. Thanks so much. And until next week. Have a good one, guys. Bye. I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin Nation, of which I recalled the podcast today. And I pay my respects to both elders past and present, along with and especially to those in the First Nations communities who are disabled themselves.
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