September 9, 2024 • 27 mins
Peta sits down with Paralympian Karni Liddell to discuss the growing NDIS crisis, the realities of disabled motherhood, and whether Australia’s Paralympic team is facing an unprecedented decline.
Connect with Karni Liddell:
Instagram: https://www.instagram.com/karniliddell/?hl=en
Karni's podcast:https://open.spotify.com/episode/
Karni's Tedx Talk: https://youtu.be/GFTeBdp__Rg?feature=shared
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:https://www.icantstandpodcast.com
See omnystudio.com/listener for privacy information.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Hello, and welcome to the I Can't Stand Podcast. The
podcast answering her questions on what life is like when
you have a disability. My name is Peter, I have
several ballsy and I'm your host. This week, I have
Connie Liddell. Connie is a Paralympian. She competed in the
(00:27):
Atlanta and Sydney Games and I was keen to hear
her perspective on how the Paralympians are going over in Paris.
She was also incredibly honest in sharing what her life
is like as a single mother with a disability and
the challenges she didn't quite expect. Also, she shares some
(00:51):
valuable insights on how the NDAs could be improved. We
have those big cuts on the horizon here in a Australia,
and I know many of us are anxious about it.
So without any further ado, let's get into it.
Speaker 2 (01:15):
My name is Carnie Liddell. I wish you could see
my wheelchair. It's under We're going to figure out a
system whereby we can see our wheelchairs in these zoom
or whatever it is.
Speaker 1 (01:25):
Eileen across you might be able to see mine in
the mirror.
Speaker 2 (01:28):
Oh, I like that idea, the mirror at the back,
whoo bringing sexy back. Literally, I'm a mum, I'm a
social worker. I used to be a paralympian. I'm not
supposed to say I used to be that. They always say,
once a paralympian, always a paralympian. I have a muscle
wasting disease, and I use a wheelchair for longer distances.
(01:52):
And I always say for good parking, which is usually
funny for everybody people to hear that. For us, we
you know, you'd probably use that joke way too many times.
Speaker 1 (02:02):
We've all heard it before. It's like the old man
that says, oh, of you've got a license for that thing.
Speaker 2 (02:06):
It's like yep, or are you drink driving? The high
five for being out buying a drink? But yes, I
do know that most people mean well. However, people don't
realize that sometimes we hear certain things like that, the
high fives of being out or are you stuck in
that forever? I hope you're not stuck in that forever?
(02:28):
Or what happened to you? What's wrong with you? Ten
times a day, so if you're the tenth person on
that day, you may get a different reaction. From say,
the first time. If I'm with my seven year old
child and you come up to me and put me
in that situation in front of my child, that is
(02:49):
actually really traumatizing. I feel like I'm disabled again for
the first time. It's like I became disabled again when
I had him, if that makes sense. Before it was
just about me and I could handle it. But I've
found that I've become less tolerant and more protective now
(03:09):
that I've got a child sitting and hearing the world
around him speak to his mother a certain way. And
I wouldn't say that I've got the answers for that yet,
because it really is hitting me harder than it did
hit me pre kai my son. When I fell pregnant,
my sisters who used wheelchairs, who had had babies before me,
(03:34):
they all said the same thing to me. They all said,
Oh no, we're so worried, like, you know, not worried, worried,
but oh god, you're going to get so many weird,
personal offensive questions now. And I really didn't believe them.
I felt like I'd been asked everything because I was
(03:55):
so heavily involved in the NDAs, I felt like I'd
really been interrogated, I call it and told all the
things that I should do to, you know, to cure myself.
And how people pray literally pray on me, not pray
p r e y p ra a y, which also
is praying on me. But yeah, mate. When I was pregnant,
I was asked by random strangers, public friends and acquaintances,
(04:23):
business people questions like how do I feel pregnant? I
dare anyone out there to walk up to an able
bodied pregnant woman and ask her that question and see
what happens. How am I going to be a mum?
Not so directly, some people did say that straight out
like that, but it was more like, how am I
(04:43):
going to bathe my kid? How am I going to
put my baby in the car? How am I going
to catch my son when he runs away from me
in the playground? And the wordst question. I think that
I was asked, and this is this is a question
that we I often talk about our share talked about
a lot in my TED speech. Is that instead of
asking me that, I guess typical universally acceptable. I don't
(05:08):
think it's acceptable, but it seems to be quite acceptable
to ask people if you want to have a boy
or a girl. Hopefully that's changing with gender, but most
people will answer that question, as you know, is I
don't care as long as my baby is healthy. And
obviously that actually means you don't want me, you don't
want Peter. That's what it actually means, and that's why
(05:29):
there's so much devastation and around that diagnosis for mums.
But for me, they were asking me, is my baby
going to have my disease? Straight up? You know exactly
what's going to happen, don't you If I say yes?
And I didn't actually know at the time because I
hadn't and I still am not one hundred percent genetically diagnosed,
(05:53):
which is very common for people with muscle wasting diseases
and really rare diseases like mine. At the moment, I'm
diagnosed with congenital tight and opathy. I think there's thirty
five of us so far in the world. And yeah,
that was a really tough question because I didn't know
whether he was going to have my disease, and to
(06:16):
have that question thrown at me by acquaintances, friends, and
the public was very traumatizing.
Speaker 1 (06:24):
So if you look back now, how do you suggest
that people do interact with disabled women who are pregnant,
because we do exist, you know. And I think that's
the thing. It's because people, you know, I only have
to go down the street as a non pregnant woman
and people are shocked to see me. So I can't
(06:46):
imagine what it would be like if I had a belly.
Speaker 2 (06:50):
Because you're so damn heart mates, because you're so hot.
Speaker 1 (06:54):
How do we educate people to be better so people
women in the future don't have to go through what
you went through.
Speaker 2 (07:02):
I always think to myself, would you ask that to
an able bodied person? If not, don't ask me. I
always try and interrogate and dissect questions and flip it
on its head and say, how do I feel pregnant?
Means that you really think again that we can't do anything.
(07:24):
How did you feel pregnant? Let me tell you this.
If you're not ready for me to say, a couple
of gin and tonics and a root that you might
ask because that's what happened. But also like the how
am I going to be a mum thing? Again? Like
I've worked in child safety and I'm a social worker,
so I've met a lot of mothers and fathers in
(07:46):
the child safety world who are toxic, abusive and neglectful
that I've had to obviously interact with in my time
as a child safety in a mandatory report a social worker.
And gosh, I wish it was that simple. I wish
it was that simple that only women who use wheelchairs
are toxic and abusive and neglectful. That isn't the case.
(08:07):
What has mothering or loving a human being got to
do with my glutes, my hamstrings, my scaps, my triceps
and those muscles. Because I've got a muscle disease, right,
So it doesn't even make sense that people would think,
and it's so unbelievably disrespectful and a little bit arrogant,
(08:33):
because why do you think you can do that better
than me? The fact that I have a muscle disease.
The only way that impacts me being a mother is
the fact that I may not be able to get
a job like my able bodied female counterparts. Hence why
I have five or six different roles next to my name,
(08:54):
and so do you, because most of us people with
disabilities cannot get good, reliable, purposeful, big leadership type roles
in Australia, and Australia is one of the worst countries
in the Western world. When it comes to employment of
people with the disability, we rank twenty first out of
(09:15):
twenty nine OECD nations. And that is the only reason
why I would have problems mothering is if I couldn't
get a job because of my disability.
Speaker 1 (09:28):
It is so close minded of people to only think
of the physical attributes of mothering. And let's face it,
that first year, yes, you know, if I will speak
for myself, if I choose to be a mother, I
will need support, particularly in that first year. Absolutely, but
as children grow, they need different types of support. It's
(09:51):
not like it's an ongoing where you have to change
your child's happy for the rest of their Life's.
Speaker 2 (09:58):
Peter, that's the easy part. Take it me, you would
be very surprised. But when your child can't move, how
much a wheelchair comes in handy, you'll be fascinated, as
I was. Once I got the right equipment. In terms
of carrying Kai on my lap, it was easier for
me because I didn't need a pram and he loved it.
(10:20):
He never, like all my friend's kids, hated being in
the prem They cried. I fed Kai on my lap,
I did everything with his mom in my lap. I
breastfed in the bed. I didn't have a cot, he
just latched on. He was fine, and I never had
an issue with Kai as a baby. The issue with
having a disability and being a mother or a father
(10:41):
in this country is the fact that we can't access
playgrounds and can't access their schools, and can't access across
the road. If we could do all that, I wouldn't
need a support work and help me with Kai. And
I'm also a single mom, so that also makes things
a little bit trickier for any single mom out there.
And if I had a partner, it doesn't mean that
(11:04):
he would be helpful anyway, because lots of everybody, lots
of my mates that nothing as fathers or mothers. Not
everyone is amazing at parenting, and not everyone helps the mother,
you know, with the overnight feeds, and oftentimes they don't
get help, whereas I actually did because of the ndaes.
(11:25):
I had support workers, not overnight, but I had support
workers there. Especially when Kai got a little bit older
and I couldn't access those playgrounds and things like that,
I really needed support workers.
Speaker 1 (11:38):
Yeah, I mean it's sort of counterintuitive, like I, of
course we need to keep our children safe by having
high fences and pool fences around playgrounds and things like that.
But for disabled people it's like, oh cool, I've locked
out too with the kids.
Speaker 2 (11:57):
And also you'd be like in South Bak Brisbane, for example,
there's a brand new playground that I don't know how
many years it's been there, let's just say five. There
is no way for me to get into that playground.
So when my son goes in, I cannot get in
any which way, which means that people with prams can't
get in either. I don't understand why we're still building
(12:17):
playgrounds and things for children that I have steps. There
are things called prams as well as children with disabilities,
not just children who use wheelchairs and parents who have
disabilities and the aging population. We've got to stop thinking
that steps and ramps are problematic just for us. It's not.
(12:38):
Everyone who gets a PRAM says to me the same thing.
Oh my god, we had nobody how bad it was
until we've got a PRAM, and it's like.
Speaker 1 (12:44):
Yeah, welcome to our world.
Speaker 2 (12:47):
Welcome.
Speaker 1 (12:48):
Yeah. And I want to talk to you about the
NDIS because it's a very interesting time in Australia to
be disabled. On the one hand, we've had the Royal
Commission in the last couple of years and that has
had some shocking but also at the same time not
surprising results through some very brave people speaking out and
(13:10):
really illustrating what it's like to be disabled in Australia.
And also at the same time we've got some massive
cuts heading for the NDIS. How are you feeling about
the eddies at the moment?
Speaker 2 (13:25):
No one in the world can afford care unless you
are literally I don't know elon musk because care right
now according to the price Guide NDIS price Guide, which
is very much dictated by service providers, is sixty five
dollars an hour minimum up to about one hundred and
twenty dollars an hour on a Sunday, And of course
(13:45):
we only get so much funding per year, so you
have to be so very careful how you spend your
money because once it runs out, it runs out, and
it looks like we're overspending, because we are. We are
over spending. If I want to go an excise physiologists
at you know, let's say I don't know a service
(14:05):
provider gym like Sporting Wheelies or Spinal Life or whatever's
out there. If I go to that disability gym, which
I'd much rather go to because you feel like you're
a part of the majority and you feel strong and
powerful and accepted, and they charge the price guy, which
is Excise Physiologies one hundred and ninety dollars an hour.
As if I go up the road to I don't know,
(14:26):
fitness first, if it still exists, I would pay what
seventy bucks for a personal trainer. Every time I ask
for a new wheelchair, it is because I need it,
either because I've progressively gotten a bit weaker, or I
can't access currently where I live. So where I live
(14:47):
now in the city, there's it's just too hard to
get around without a big chair like yours. It costs
the wheelchair that ends up costing ten grand extra because
of all the reports that I've got to get from
the OT eighteen hundred dollars a hit or whatever it
is to prove that I need the wheelchair, so you
can see the cost blowout. It's not about us hanging
(15:07):
out and you know, sipping pinny clatters at the bloody
highest hotel. This is a ridiculous situation that we're in,
and this is not what we fought for. I fought
for this to be. Once you're in with your disability,
you're in. You haven't got to prove that you're disabled
every five minutes, because we've got to it everywhere else in
(15:29):
the world. And then from there, hopefully we can get
ourselves into an accessible living situation with the right equipment
and obviously right supports, so we can then do life,
get out the front door. And then the world was
supposed to open up their doors to us to get employment,
(15:52):
and that just hasn't happened. That's the disconnect we've now learned,
like we had to learn before the ndis if you
don't say these three goals, which is so condescending to
ask a forty five year old educated mother, what are
your goals? And my goals have to be things like
(16:12):
being an independent, functional mother, you know, working, And the
worst one of all is like participating in the community.
What a joke?
Speaker 1 (16:22):
Who the hell?
Speaker 2 (16:23):
What kind of a body person says I want to
participate in the community. I mean, but that's what they
want us to say. And if we don't say that,
we know we can't get the care we need to live.
I would be just literally looking at the price guide,
the reports, the waste of money on reports, and also
why we are using certain mainstream services over disability services.
(16:48):
And if disability service providers have lost us as customers,
then they need to figure out a way to get
us back. There is serious things here that I would
love to get out there that talking about us, Like
for talking about the sex worker thing for example, that
was absolutely disgusting to even talk about that openly. And
(17:11):
I think it worked out to be one hundred and
thirty people all up, have you used sex workers? And
I just want to get something out there really loud
and clear here. Sex workers prostitutes only fans. Whatever floats
your boat, abody. People utilize them all the time for
a variety of different reasons. Right, that's fine, and so
(17:31):
so do disabled people. The ndis registered sex workers we
are talking about here are often utilized by people who
have acquired an injury whereby they can no longer have
sex the traditional way. They can no longer you know,
obviously get an erection. All let's be really frankier. They
(17:52):
cannot have sex like they used to have sex. Therefore,
they may need to learn how to have sex so
they can have a bloody great normal human existence.
Speaker 1 (18:08):
Today is a very important day in disabled life because
the Paralympics started last night our time or very early
this morning. How are you feeling about the Paralympics, said,
how do you feel like the Aussies will go this year?
In twenty twenty four in Paris.
Speaker 2 (18:27):
So Sydney two thousand we topped the metal tally in Sydney,
Australia did and it was truly life changing for me.
I've watched the Paralympic team, our Australian Paralympic team really
change over the years and the reason there's many reasons
why there's been such a big change with the Paralympics
(18:52):
in this country. When I did disabled sport back when
I was eight. When I started, it was run by
Sporting Wheelie. So you know, I came down as this
eight year old kid, came down to Chandler Pool, arrived
there and then all of a sudden, this whole new
world open up to me where everybody was disabled. Everybody
looked a bit like me. Everybody used wheelchairs. Although you
(19:14):
know I walk with a really obvious let me call
it a gate, I call it a swagger. You know,
I walk with a really obvious disability. And I was
the only disabled kid at my school in Rocky, so
that felt like I was the only, to say, a
person in the world. And then all of a sudden,
I wasn't when I wheeled into the pool that day.
(19:37):
And now if I was that eight year old kid,
I would only have the option of going to the
able bodied state swimming championships, for example, for swimming. And
that's the problem is, is the only time anybody people
see us racing at that you know, local level is
multi class, which means someone like me, like I'm obvious
(20:00):
in a wheelchair obviously, but I am in a wheelchair,
so I'm an S six, which is a low class.
So you S one being the most disabled, S ten
being the least disabled, and I was in there because
all four limbs are affected. If that had happened to me,
if I'd gone to state swimming championships and been surrounded
by ablebodied kids just like at school, and then got
(20:21):
jumped into a multi class event racing S ten's when
S ten would be above knee, one leg amputation for example,
or club feeds or one hand missing, so mildly disabled,
so therefore they would beat me by about twenty seconds
or something, so I would have just felt like I
was at school. I would have felt weak and not good,
(20:43):
and you would never have seen me again. The swimming
team that's over there, now, this is not the athlete's fault.
This is not me bitching about Paralympic athletes. This is
me being honest and hoping that we can figure out
a way forward because we've got Brisbane twenty thirty two
looming and something has to change drastically, not just for
(21:05):
us to become a more successful Paralympic team, but because
kids with disabilities deserve what I had. The current swimming
team has a scooter. Grant Patterson as a low class
(21:27):
I think is three S four. Med Kelly again, I
think he's S three S four, Rachel Watson, I think
is an S four. And I think I saw another
girl that's new that's an S seven. She's in a chair,
so that's four. So that's two women who use wheelchairs
on the entire swimming team. So in other words, when
we watch the Paralympics, we're going to have S one
(21:49):
to say S seven male and female every event with
no one in them. Our Austrain Women's wheelchair basketball team
did not qualify for the Paralympics in Paris. We will
not have the women's wheelchair basketball team in Paris. Australia
will not have a team there. Golbal. Both those teams
(22:11):
didn't qualify male and female gobble as for vision impaired athletes,
so Australia didn't qualify for that either. I think they
came thirty third at World Athletics Championships. Australia to't even
know there were thirty three nations actually competing at athletics
at that level. Again, are only saying this because I
(22:33):
want the sports to be made accountable because they're getting
funding for us and if they don't want to do
it or can't do it, then give it back. Because
right now, if the Broncos didn't make the finals, the
CEO and the coach would be held accountable. We are
(22:54):
now commercial, we are now funded fully and we've got
the NDIS running alongside it. So really and truly we
have to look at this because the Paralympic team is
a mirror to the disability community. We have a chance
to be honest about it and say the Paralympians aren't
(23:16):
doing well. If they're not doing well, then of course
we're not doing well. Isn't it interesting that we as
a public expect and think everybody with the disability should
play or be paralympians, So I do the most extreme
level of activity or elite sport, even though we may,
(23:38):
like for me, have a muscle disease and I can't
wash my hair, or you've got all four limbs missing
or whatever it is, right, But then they'll come back
to Australia and then they went about to get a
job as a social worker. But oh no, you can
play with chair rugby, but he can't be a lawyer.
Oh you can play with chair rugby, but he can't
be a You can't get on a plane in this
country because you're to say so. Isn't it interesting how
(24:02):
we expect people to do that stuff and being a
paralympian as you know it isn't I mean, if it
was easy, I'd still be doing it. I think we've
had seven Aboriginal toist older paralympians in our history. Over
half of the community, over fifty percent of the Aboriginal
Taistrrounder community identify as having a disability. And I've spent
(24:23):
a lot of time in Aboriginal communities in my work,
and I would say it's even higher than that. And
those kids don't even realize they can play disablers for
they've never heard of it. They don't even know they're disabled.
Most of them have been classified as feed alcohol syndrome,
which is just a racist, non medical clinical diagnosis, which
(24:46):
nobody asked my mum did she drink when I came
out with my disability. We need to bring back situations
where people with disabilities can race and only be around
people with disabilities, especially those high support needs, severely disabled kids,
because if that hadn't happened to me, I would not
(25:08):
be the confident person I am today. We're going to
see it. We're going to see Paralympics hit rock bottom,
and I hope that with the rock bottom, the media
cover it properly, and I hope from there we start
trying to figure out a way forward because Brisbane twenty
thirty two that everyone's going to expect us to win
(25:31):
and it's going to be really embarrassing to have these
accessible stadiums we keep talking about with no Paralympis. So
it's time. It's time.
Speaker 1 (25:45):
Thank you for listening to this week's episode, and thank
you Kennie for being so open and honest. Don't forget
you can always scroll back in the feed to listen
to more episodes. Last week I spoke with Diana. She
has MS and she spoke about how she uses her
MRI scans to create art. It was a really fantastic episode.
(26:10):
If you do enjoy this podcast, can I encourage you
to share it with a friend, share it on social media,
or hit five stars hopefully five on any podcasting platform
you listen on. It helps more people find the podcast.
Thanks so much for listening, and after a short break
(26:30):
while they go on holidays, I'll see you next time.
I would like to respectfully acknowledge they were wondery and
bunner 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
(26:53):
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 her questions on what life is like when
you have a disability. My name is Peter, I have
several ballsy and I'm your host. This week, I have
Connie Liddell. Connie is a Paralympian. She competed in the
(00:27):
Atlanta and Sydney Games and I was keen to hear
her perspective on how the Paralympians are going over in Paris.
She was also incredibly honest in sharing what her life
is like as a single mother with a disability and
the challenges she didn't quite expect. Also, she shares some
(00:51):
valuable insights on how the NDAs could be improved. We
have those big cuts on the horizon here in a Australia,
and I know many of us are anxious about it.
So without any further ado, let's get into it.
Speaker 2 (01:15):
My name is Carnie Liddell. I wish you could see
my wheelchair. It's under We're going to figure out a
system whereby we can see our wheelchairs in these zoom
or whatever it is.
Speaker 1 (01:25):
Eileen across you might be able to see mine in
the mirror.
Speaker 2 (01:28):
Oh, I like that idea, the mirror at the back,
whoo bringing sexy back. Literally, I'm a mum, I'm a
social worker. I used to be a paralympian. I'm not
supposed to say I used to be that. They always say,
once a paralympian, always a paralympian. I have a muscle
wasting disease, and I use a wheelchair for longer distances.
(01:52):
And I always say for good parking, which is usually
funny for everybody people to hear that. For us, we
you know, you'd probably use that joke way too many times.
Speaker 1 (02:02):
We've all heard it before. It's like the old man
that says, oh, of you've got a license for that thing.
Speaker 2 (02:06):
It's like yep, or are you drink driving? The high
five for being out buying a drink? But yes, I
do know that most people mean well. However, people don't
realize that sometimes we hear certain things like that, the
high fives of being out or are you stuck in
that forever? I hope you're not stuck in that forever?
(02:28):
Or what happened to you? What's wrong with you? Ten
times a day, so if you're the tenth person on
that day, you may get a different reaction. From say,
the first time. If I'm with my seven year old
child and you come up to me and put me
in that situation in front of my child, that is
(02:49):
actually really traumatizing. I feel like I'm disabled again for
the first time. It's like I became disabled again when
I had him, if that makes sense. Before it was
just about me and I could handle it. But I've
found that I've become less tolerant and more protective now
(03:09):
that I've got a child sitting and hearing the world
around him speak to his mother a certain way. And
I wouldn't say that I've got the answers for that yet,
because it really is hitting me harder than it did
hit me pre kai my son. When I fell pregnant,
my sisters who used wheelchairs, who had had babies before me,
(03:34):
they all said the same thing to me. They all said,
Oh no, we're so worried, like, you know, not worried, worried,
but oh god, you're going to get so many weird,
personal offensive questions now. And I really didn't believe them.
I felt like I'd been asked everything because I was
(03:55):
so heavily involved in the NDAs, I felt like I'd
really been interrogated, I call it and told all the
things that I should do to, you know, to cure myself.
And how people pray literally pray on me, not pray
p r e y p ra a y, which also
is praying on me. But yeah, mate. When I was pregnant,
I was asked by random strangers, public friends and acquaintances,
(04:23):
business people questions like how do I feel pregnant? I
dare anyone out there to walk up to an able
bodied pregnant woman and ask her that question and see
what happens. How am I going to be a mum?
Not so directly, some people did say that straight out
like that, but it was more like, how am I
(04:43):
going to bathe my kid? How am I going to
put my baby in the car? How am I going
to catch my son when he runs away from me
in the playground? And the wordst question. I think that
I was asked, and this is this is a question
that we I often talk about our share talked about
a lot in my TED speech. Is that instead of
asking me that, I guess typical universally acceptable. I don't
(05:08):
think it's acceptable, but it seems to be quite acceptable
to ask people if you want to have a boy
or a girl. Hopefully that's changing with gender, but most
people will answer that question, as you know, is I
don't care as long as my baby is healthy. And
obviously that actually means you don't want me, you don't
want Peter. That's what it actually means, and that's why
(05:29):
there's so much devastation and around that diagnosis for mums.
But for me, they were asking me, is my baby
going to have my disease? Straight up? You know exactly
what's going to happen, don't you If I say yes?
And I didn't actually know at the time because I
hadn't and I still am not one hundred percent genetically diagnosed,
(05:53):
which is very common for people with muscle wasting diseases
and really rare diseases like mine. At the moment, I'm
diagnosed with congenital tight and opathy. I think there's thirty
five of us so far in the world. And yeah,
that was a really tough question because I didn't know
whether he was going to have my disease, and to
(06:16):
have that question thrown at me by acquaintances, friends, and
the public was very traumatizing.
Speaker 1 (06:24):
So if you look back now, how do you suggest
that people do interact with disabled women who are pregnant,
because we do exist, you know. And I think that's
the thing. It's because people, you know, I only have
to go down the street as a non pregnant woman
and people are shocked to see me. So I can't
(06:46):
imagine what it would be like if I had a belly.
Speaker 2 (06:50):
Because you're so damn heart mates, because you're so hot.
Speaker 1 (06:54):
How do we educate people to be better so people
women in the future don't have to go through what
you went through.
Speaker 2 (07:02):
I always think to myself, would you ask that to
an able bodied person? If not, don't ask me. I
always try and interrogate and dissect questions and flip it
on its head and say, how do I feel pregnant?
Means that you really think again that we can't do anything.
(07:24):
How did you feel pregnant? Let me tell you this.
If you're not ready for me to say, a couple
of gin and tonics and a root that you might
ask because that's what happened. But also like the how
am I going to be a mum thing? Again? Like
I've worked in child safety and I'm a social worker,
so I've met a lot of mothers and fathers in
(07:46):
the child safety world who are toxic, abusive and neglectful
that I've had to obviously interact with in my time
as a child safety in a mandatory report a social worker.
And gosh, I wish it was that simple. I wish
it was that simple that only women who use wheelchairs
are toxic and abusive and neglectful. That isn't the case.
(08:07):
What has mothering or loving a human being got to
do with my glutes, my hamstrings, my scaps, my triceps
and those muscles. Because I've got a muscle disease, right,
So it doesn't even make sense that people would think,
and it's so unbelievably disrespectful and a little bit arrogant,
(08:33):
because why do you think you can do that better
than me? The fact that I have a muscle disease.
The only way that impacts me being a mother is
the fact that I may not be able to get
a job like my able bodied female counterparts. Hence why
I have five or six different roles next to my name,
(08:54):
and so do you, because most of us people with
disabilities cannot get good, reliable, purposeful, big leadership type roles
in Australia, and Australia is one of the worst countries
in the Western world. When it comes to employment of
people with the disability, we rank twenty first out of
(09:15):
twenty nine OECD nations. And that is the only reason
why I would have problems mothering is if I couldn't
get a job because of my disability.
Speaker 1 (09:28):
It is so close minded of people to only think
of the physical attributes of mothering. And let's face it,
that first year, yes, you know, if I will speak
for myself, if I choose to be a mother, I
will need support, particularly in that first year. Absolutely, but
as children grow, they need different types of support. It's
(09:51):
not like it's an ongoing where you have to change
your child's happy for the rest of their Life's.
Speaker 2 (09:58):
Peter, that's the easy part. Take it me, you would
be very surprised. But when your child can't move, how
much a wheelchair comes in handy, you'll be fascinated, as
I was. Once I got the right equipment. In terms
of carrying Kai on my lap, it was easier for
me because I didn't need a pram and he loved it.
(10:20):
He never, like all my friend's kids, hated being in
the prem They cried. I fed Kai on my lap,
I did everything with his mom in my lap. I
breastfed in the bed. I didn't have a cot, he
just latched on. He was fine, and I never had
an issue with Kai as a baby. The issue with
having a disability and being a mother or a father
(10:41):
in this country is the fact that we can't access
playgrounds and can't access their schools, and can't access across
the road. If we could do all that, I wouldn't
need a support work and help me with Kai. And
I'm also a single mom, so that also makes things
a little bit trickier for any single mom out there.
And if I had a partner, it doesn't mean that
(11:04):
he would be helpful anyway, because lots of everybody, lots
of my mates that nothing as fathers or mothers. Not
everyone is amazing at parenting, and not everyone helps the mother,
you know, with the overnight feeds, and oftentimes they don't
get help, whereas I actually did because of the ndaes.
(11:25):
I had support workers, not overnight, but I had support
workers there. Especially when Kai got a little bit older
and I couldn't access those playgrounds and things like that,
I really needed support workers.
Speaker 1 (11:38):
Yeah, I mean it's sort of counterintuitive, like I, of
course we need to keep our children safe by having
high fences and pool fences around playgrounds and things like that.
But for disabled people it's like, oh cool, I've locked
out too with the kids.
Speaker 2 (11:57):
And also you'd be like in South Bak Brisbane, for example,
there's a brand new playground that I don't know how
many years it's been there, let's just say five. There
is no way for me to get into that playground.
So when my son goes in, I cannot get in
any which way, which means that people with prams can't
get in either. I don't understand why we're still building
(12:17):
playgrounds and things for children that I have steps. There
are things called prams as well as children with disabilities,
not just children who use wheelchairs and parents who have
disabilities and the aging population. We've got to stop thinking
that steps and ramps are problematic just for us. It's not.
(12:38):
Everyone who gets a PRAM says to me the same thing.
Oh my god, we had nobody how bad it was
until we've got a PRAM, and it's like.
Speaker 1 (12:44):
Yeah, welcome to our world.
Speaker 2 (12:47):
Welcome.
Speaker 1 (12:48):
Yeah. And I want to talk to you about the
NDIS because it's a very interesting time in Australia to
be disabled. On the one hand, we've had the Royal
Commission in the last couple of years and that has
had some shocking but also at the same time not
surprising results through some very brave people speaking out and
(13:10):
really illustrating what it's like to be disabled in Australia.
And also at the same time we've got some massive
cuts heading for the NDIS. How are you feeling about
the eddies at the moment?
Speaker 2 (13:25):
No one in the world can afford care unless you
are literally I don't know elon musk because care right
now according to the price Guide NDIS price Guide, which
is very much dictated by service providers, is sixty five
dollars an hour minimum up to about one hundred and
twenty dollars an hour on a Sunday, And of course
(13:45):
we only get so much funding per year, so you
have to be so very careful how you spend your
money because once it runs out, it runs out, and
it looks like we're overspending, because we are. We are
over spending. If I want to go an excise physiologists
at you know, let's say I don't know a service
(14:05):
provider gym like Sporting Wheelies or Spinal Life or whatever's
out there. If I go to that disability gym, which
I'd much rather go to because you feel like you're
a part of the majority and you feel strong and
powerful and accepted, and they charge the price guy, which
is Excise Physiologies one hundred and ninety dollars an hour.
As if I go up the road to I don't know,
(14:26):
fitness first, if it still exists, I would pay what
seventy bucks for a personal trainer. Every time I ask
for a new wheelchair, it is because I need it,
either because I've progressively gotten a bit weaker, or I
can't access currently where I live. So where I live
(14:47):
now in the city, there's it's just too hard to
get around without a big chair like yours. It costs
the wheelchair that ends up costing ten grand extra because
of all the reports that I've got to get from
the OT eighteen hundred dollars a hit or whatever it
is to prove that I need the wheelchair, so you
can see the cost blowout. It's not about us hanging
(15:07):
out and you know, sipping pinny clatters at the bloody
highest hotel. This is a ridiculous situation that we're in,
and this is not what we fought for. I fought
for this to be. Once you're in with your disability,
you're in. You haven't got to prove that you're disabled
every five minutes, because we've got to it everywhere else in
(15:29):
the world. And then from there, hopefully we can get
ourselves into an accessible living situation with the right equipment
and obviously right supports, so we can then do life,
get out the front door. And then the world was
supposed to open up their doors to us to get employment,
(15:52):
and that just hasn't happened. That's the disconnect we've now learned,
like we had to learn before the ndis if you
don't say these three goals, which is so condescending to
ask a forty five year old educated mother, what are
your goals? And my goals have to be things like
(16:12):
being an independent, functional mother, you know, working, And the
worst one of all is like participating in the community.
What a joke?
Speaker 1 (16:22):
Who the hell?
Speaker 2 (16:23):
What kind of a body person says I want to
participate in the community. I mean, but that's what they
want us to say. And if we don't say that,
we know we can't get the care we need to live.
I would be just literally looking at the price guide,
the reports, the waste of money on reports, and also
why we are using certain mainstream services over disability services.
(16:48):
And if disability service providers have lost us as customers,
then they need to figure out a way to get
us back. There is serious things here that I would
love to get out there that talking about us, Like
for talking about the sex worker thing for example, that
was absolutely disgusting to even talk about that openly. And
(17:11):
I think it worked out to be one hundred and
thirty people all up, have you used sex workers? And
I just want to get something out there really loud
and clear here. Sex workers prostitutes only fans. Whatever floats
your boat, abody. People utilize them all the time for
a variety of different reasons. Right, that's fine, and so
(17:31):
so do disabled people. The ndis registered sex workers we
are talking about here are often utilized by people who
have acquired an injury whereby they can no longer have
sex the traditional way. They can no longer you know,
obviously get an erection. All let's be really frankier. They
(17:52):
cannot have sex like they used to have sex. Therefore,
they may need to learn how to have sex so
they can have a bloody great normal human existence.
Speaker 1 (18:08):
Today is a very important day in disabled life because
the Paralympics started last night our time or very early
this morning. How are you feeling about the Paralympics, said,
how do you feel like the Aussies will go this year?
In twenty twenty four in Paris.
Speaker 2 (18:27):
So Sydney two thousand we topped the metal tally in Sydney,
Australia did and it was truly life changing for me.
I've watched the Paralympic team, our Australian Paralympic team really
change over the years and the reason there's many reasons
why there's been such a big change with the Paralympics
(18:52):
in this country. When I did disabled sport back when
I was eight. When I started, it was run by
Sporting Wheelie. So you know, I came down as this
eight year old kid, came down to Chandler Pool, arrived
there and then all of a sudden, this whole new
world open up to me where everybody was disabled. Everybody
looked a bit like me. Everybody used wheelchairs. Although you
(19:14):
know I walk with a really obvious let me call
it a gate, I call it a swagger. You know,
I walk with a really obvious disability. And I was
the only disabled kid at my school in Rocky, so
that felt like I was the only, to say, a
person in the world. And then all of a sudden,
I wasn't when I wheeled into the pool that day.
(19:37):
And now if I was that eight year old kid,
I would only have the option of going to the
able bodied state swimming championships, for example, for swimming. And
that's the problem is, is the only time anybody people
see us racing at that you know, local level is
multi class, which means someone like me, like I'm obvious
(20:00):
in a wheelchair obviously, but I am in a wheelchair,
so I'm an S six, which is a low class.
So you S one being the most disabled, S ten
being the least disabled, and I was in there because
all four limbs are affected. If that had happened to me,
if I'd gone to state swimming championships and been surrounded
by ablebodied kids just like at school, and then got
(20:21):
jumped into a multi class event racing S ten's when
S ten would be above knee, one leg amputation for example,
or club feeds or one hand missing, so mildly disabled,
so therefore they would beat me by about twenty seconds
or something, so I would have just felt like I
was at school. I would have felt weak and not good,
(20:43):
and you would never have seen me again. The swimming
team that's over there, now, this is not the athlete's fault.
This is not me bitching about Paralympic athletes. This is
me being honest and hoping that we can figure out
a way forward because we've got Brisbane twenty thirty two
looming and something has to change drastically, not just for
(21:05):
us to become a more successful Paralympic team, but because
kids with disabilities deserve what I had. The current swimming
team has a scooter. Grant Patterson as a low class
(21:27):
I think is three S four. Med Kelly again, I
think he's S three S four, Rachel Watson, I think
is an S four. And I think I saw another
girl that's new that's an S seven. She's in a chair,
so that's four. So that's two women who use wheelchairs
on the entire swimming team. So in other words, when
we watch the Paralympics, we're going to have S one
(21:49):
to say S seven male and female every event with
no one in them. Our Austrain Women's wheelchair basketball team
did not qualify for the Paralympics in Paris. We will
not have the women's wheelchair basketball team in Paris. Australia
will not have a team there. Golbal. Both those teams
(22:11):
didn't qualify male and female gobble as for vision impaired athletes,
so Australia didn't qualify for that either. I think they
came thirty third at World Athletics Championships. Australia to't even
know there were thirty three nations actually competing at athletics
at that level. Again, are only saying this because I
(22:33):
want the sports to be made accountable because they're getting
funding for us and if they don't want to do
it or can't do it, then give it back. Because
right now, if the Broncos didn't make the finals, the
CEO and the coach would be held accountable. We are
(22:54):
now commercial, we are now funded fully and we've got
the NDIS running alongside it. So really and truly we
have to look at this because the Paralympic team is
a mirror to the disability community. We have a chance
to be honest about it and say the Paralympians aren't
(23:16):
doing well. If they're not doing well, then of course
we're not doing well. Isn't it interesting that we as
a public expect and think everybody with the disability should
play or be paralympians, So I do the most extreme
level of activity or elite sport, even though we may,
(23:38):
like for me, have a muscle disease and I can't
wash my hair, or you've got all four limbs missing
or whatever it is, right, But then they'll come back
to Australia and then they went about to get a
job as a social worker. But oh no, you can
play with chair rugby, but he can't be a lawyer.
Oh you can play with chair rugby, but he can't
be a You can't get on a plane in this
country because you're to say so. Isn't it interesting how
(24:02):
we expect people to do that stuff and being a
paralympian as you know it isn't I mean, if it
was easy, I'd still be doing it. I think we've
had seven Aboriginal toist older paralympians in our history. Over
half of the community, over fifty percent of the Aboriginal
Taistrrounder community identify as having a disability. And I've spent
(24:23):
a lot of time in Aboriginal communities in my work,
and I would say it's even higher than that. And
those kids don't even realize they can play disablers for
they've never heard of it. They don't even know they're disabled.
Most of them have been classified as feed alcohol syndrome,
which is just a racist, non medical clinical diagnosis, which
(24:46):
nobody asked my mum did she drink when I came
out with my disability. We need to bring back situations
where people with disabilities can race and only be around
people with disabilities, especially those high support needs, severely disabled kids,
because if that hadn't happened to me, I would not
(25:08):
be the confident person I am today. We're going to
see it. We're going to see Paralympics hit rock bottom,
and I hope that with the rock bottom, the media
cover it properly, and I hope from there we start
trying to figure out a way forward because Brisbane twenty
thirty two that everyone's going to expect us to win
(25:31):
and it's going to be really embarrassing to have these
accessible stadiums we keep talking about with no Paralympis. So
it's time. It's time.
Speaker 1 (25:45):
Thank you for listening to this week's episode, and thank
you Kennie for being so open and honest. Don't forget
you can always scroll back in the feed to listen
to more episodes. Last week I spoke with Diana. She
has MS and she spoke about how she uses her
MRI scans to create art. It was a really fantastic episode.
(26:10):
If you do enjoy this podcast, can I encourage you
to share it with a friend, share it on social media,
or hit five stars hopefully five on any podcasting platform
you listen on. It helps more people find the podcast.
Thanks so much for listening, and after a short break
(26:30):
while they go on holidays, I'll see you next time.
I would like to respectfully acknowledge they were wondery and
bunner 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
(26:53):
to those in the First Nation's communities who are disabled themselves.
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