November 4, 2024 • 25 mins
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.
Connect with Mandy:
Website: https://www.getstarteddisability.org.au
Facebook: https://www.facebook.com/GetStartedDisability
Instagram: https://www.instagram.com/getstarteddisability/
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:https://www.icantstandpodcast.com
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Episode Transcript
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Speaker 1 (00:03):
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
(00:27):
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
(00:50):
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
(01:11):
would do if I didn't have my parents' house as
a backup. So, without any further ado, let's get into it.
Speaker 2 (01:26):
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.
Speaker 1 (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, maybe do
a little bit of introduction of how you became into
a pool community.
Speaker 2 (02:02):
So I've been disabled now for twelve years, I think
it is.
Speaker 3 (02:07):
So.
Speaker 2 (02:08):
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
(02:29):
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
(02:50):
kids that I'm half pirate, half robot.
Speaker 1 (02:53):
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,
(03:14):
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.
Speaker 2 (03:27):
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
(03:47):
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
(04:07):
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
(04:32):
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?
Speaker 1 (04:52):
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
(05:12):
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?
Speaker 2 (05:27):
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,
(05:48):
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
(06:08):
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
(06:30):
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.
Speaker 4 (06:41):
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.
Speaker 2 (06:53):
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
(07:16):
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,
(07:37):
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.
(07:59):
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
(08:22):
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?
(08:46):
So wish me luck. That's going to be a fun one.
Speaker 1 (08:50):
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
(09:13):
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.
Speaker 2 (09:31):
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.
Speaker 1 (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
(10:03):
they said they weren't okay. And that really reminds me
of your story.
Speaker 2 (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
(10:32):
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,
(10:52):
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
(11:13):
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
(11:35):
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
(11:59):
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
(12:21):
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
(12:44):
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,
(13:05):
just chat about life, which has been fantastic.
Speaker 1 (13:08):
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
(13:31):
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.
Speaker 2 (13:45):
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.
(14:05):
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
(14:25):
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.
Speaker 1 (14:40):
Yeah, that's a unique skill to put on their resumes
when they start work, that's for sure. Mandy.
Speaker 2 (14:47):
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.
Speaker 5 (15:05):
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.
Speaker 2 (15:15):
You've got to do it.
Speaker 1 (15:17):
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,
(15:40):
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?
Speaker 2 (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,
(16:12):
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,
(16:34):
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
(16:55):
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,
(17:15):
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
(17:35):
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?
(17:56):
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,
(18:16):
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
(18:40):
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
(19:01):
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
(19:25):
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
(19:49):
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
(20:09):
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.
Speaker 1 (20:23):
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
(20:45):
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
(21:07):
I just cried, and I said, what am I going
to do when you die?
Speaker 2 (21:10):
Like?
Speaker 1 (21:11):
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
(21:33):
hospital and admit yourself.
Speaker 2 (21:37):
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
(22:00):
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
(22:24):
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
(22:46):
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.
Speaker 1 (23:10):
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.
Speaker 2 (23:33):
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
(23:56):
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.
Speaker 1 (24:12):
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.
Speaker 3 (24:30):
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?
Speaker 2 (24:49):
So yeah, please come along. This should be a lot
of fun. I'm looking forward to it. Hooray.
Speaker 1 (24:59):
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
(25:21):
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
(25:44):
both elders past and present, along with and especially to
those in the First Nation's communities who are disabled themselves.
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
(00:27):
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
(00:50):
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
(01:11):
would do if I didn't have my parents' house as
a backup. So, without any further ado, let's get into it.
Speaker 2 (01:26):
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.
Speaker 1 (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, maybe do
a little bit of introduction of how you became into
a pool community.
Speaker 2 (02:02):
So I've been disabled now for twelve years, I think
it is.
Speaker 3 (02:07):
So.
Speaker 2 (02:08):
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
(02:29):
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
(02:50):
kids that I'm half pirate, half robot.
Speaker 1 (02:53):
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,
(03:14):
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.
Speaker 2 (03:27):
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
(03:47):
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
(04:07):
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
(04:32):
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?
Speaker 1 (04:52):
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
(05:12):
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?
Speaker 2 (05:27):
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,
(05:48):
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
(06:08):
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
(06:30):
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.
Speaker 4 (06:41):
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.
Speaker 2 (06:53):
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
(07:16):
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,
(07:37):
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.
(07:59):
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
(08:22):
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?
(08:46):
So wish me luck. That's going to be a fun one.
Speaker 1 (08:50):
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
(09:13):
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.
Speaker 2 (09:31):
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.
Speaker 1 (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
(10:03):
they said they weren't okay. And that really reminds me
of your story.
Speaker 2 (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
(10:32):
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,
(10:52):
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
(11:13):
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
(11:35):
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
(11:59):
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
(12:21):
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
(12:44):
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,
(13:05):
just chat about life, which has been fantastic.
Speaker 1 (13:08):
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
(13:31):
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.
Speaker 2 (13:45):
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.
(14:05):
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
(14:25):
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.
Speaker 1 (14:40):
Yeah, that's a unique skill to put on their resumes
when they start work, that's for sure. Mandy.
Speaker 2 (14:47):
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.
Speaker 5 (15:05):
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.
Speaker 2 (15:15):
You've got to do it.
Speaker 1 (15:17):
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,
(15:40):
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?
Speaker 2 (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,
(16:12):
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,
(16:34):
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
(16:55):
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,
(17:15):
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
(17:35):
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?
(17:56):
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,
(18:16):
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
(18:40):
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
(19:01):
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
(19:25):
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
(19:49):
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
(20:09):
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.
Speaker 1 (20:23):
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
(20:45):
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
(21:07):
I just cried, and I said, what am I going
to do when you die?
Speaker 2 (21:10):
Like?
Speaker 1 (21:11):
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
(21:33):
hospital and admit yourself.
Speaker 2 (21:37):
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
(22:00):
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
(22:24):
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
(22:46):
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.
Speaker 1 (23:10):
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.
Speaker 2 (23:33):
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
(23:56):
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.
Speaker 1 (24:12):
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.
Speaker 3 (24:30):
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?
Speaker 2 (24:49):
So yeah, please come along. This should be a lot
of fun. I'm looking forward to it. Hooray.
Speaker 1 (24:59):
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
(25:21):
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
(25:44):
both elders past and present, along with and especially to
those in the First Nation's communities who are disabled themselves.
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