December 9, 2024 • 29 mins
In this episode, Peta speaks with Carolyn Campbell-McLean and Jaxon Taylor, two people living with Muscular Dystrophy. Carolyn reflects on her decades of experience as a woman with MD, emphasising the importance of purpose and connection in navigating life’s challenges.
Meanwhile, Jaxon offers insights as a young man in his late teens, sharing his confidence, determination, and passion for fostering community. Together, they discuss the challenges and triumphs of life stages, support systems, and living life to the fullest.
Connect with MDNSW:
Website: https://mdnsw.org.au
Instagram: https://www.instagram.com/musculardystrophynsw/
Facebook: https://www.facebook.com/MDNSW
Youtube: https://www.youtube.com/channel
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 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 is with
two amazing disabled individuals, Carolyn Campbell McLain and Jackson Taylor,
(00:31):
both of which have come on the show to share
what their life is like and how they're supported by
Muscular Dystrophy New South Wales. It was really interesting to
see a difference in perspective both as male and female,
and also a difference in age. Jackson is in his
(00:52):
late teens. So without any further ado, let's get into it.
Speaker 2 (01:07):
Hi, Peter and everybody. My name is Carolyn Campbell McLain.
It's great to be on here today to talk about
my work at Muscular District in New South Wales. So yeah,
I'm a senior Community Support Specialist.
Speaker 3 (01:22):
So I had a new title, so I almost forgot
what it was.
Speaker 2 (01:24):
But basically my job is to support people who live
with muscular distrophy and any of the seventy different types
of neuromuscular conditions and their families and give them information connection.
We have lots of events and programs, and so, yeah,
my job is really to get some education and going
(01:46):
out there in the community about what muscular distriphy is
and the services and supports that are available to people
that may be living with those neuromuscular conditions.
Speaker 1 (02:00):
The main gaps that you find that people still don't
understand about muscular dystrophy that you're constantly re educating the
community about.
Speaker 3 (02:09):
Yeah, that's a really good question, Peter.
Speaker 2 (02:11):
So basically, I guess even the name is hard to
say and remember, but muscular dystrophy can sometimes get muddled up,
like MD is the short form, but sometimes that can
get muddled up with motor neurone disease, which is often MND.
But just to be clear that neuromuscular conditions, which is
(02:32):
like an umbrella for the muscular dystrophies, there are any
kind of physical disability that relate to progressive weakness in
either the nerves.
Speaker 3 (02:42):
Or the muscles.
Speaker 2 (02:44):
When someone might be diagnosed, they could be diagnosed as
a child or perhaps even before birth.
Speaker 3 (02:51):
They could be.
Speaker 2 (02:52):
Diagnosed as child, as an adult, they could be diagnosed
later on in life. So it's conditions that affect people
all different life stages, and I guess, depending on their
life stage when they're diagnosed, that has a huge impact
on their needs and the supports that they might find
help for.
Speaker 1 (03:13):
That.
Speaker 2 (03:13):
I live with a condition called spinal muscular atrophy, which
is SMA for sure, and I was diagnosed as a
very young child, and I don't ever remember not having
a disability. And I've been a wheelchair user for you know,
nearly about.
Speaker 3 (03:29):
Forty eight years now, so always my whole life.
Speaker 2 (03:33):
So for me, it's been a long journey of I guess,
acceptance in terms of that this is my life and
this I haven't really known any other difference in my life.
Whereas people who may be diagnosed or have symptoms on set,
you know, later on in life, they will have, you know,
(03:53):
various degrees of challenging psychological issues to do with you know,
the changes in and in you know, their walking, whether
their mobility, mobility is affected, people might have difficulty swallowing
or breathing, and all sorts of physical functions that people
(04:15):
you know usually just take for granted can be affected
by the different muscular distrophies. Even getting a diagnosis sometimes
in the first place, can be challenging. Some people actually
spend many years getting going through investigations, testing and trying
to find the right specialists to diagnose conditions. So we
(04:37):
usually find that when people do have a diagnosis, that's
much more empowering for them because they can then further,
you know, seek further information, and they can connect with
other people that live with that condition. And I guess,
as someone who runs what we call the peer Connect
program at md New South Wales, connecting with other people
(04:59):
we've lived in experience is there very powerful.
Speaker 1 (05:04):
And I have to say what you've just spoken about
really encompasses how challenging it can be to have a disability, because,
like everyone, we age and we face different challenges as
we get older. So I'm sure that's where a lot
of your challenge would lie in your job, that in
each life stage brings up different challenges. Like I'm sure
(05:26):
you'll agree with me, things like education can be super
challenging for a young person with a disability. Getting employed
is a massive, massive issue for people in a community
and also for families and societies or society in general
to not see our disabilities as a tragedy, even though
(05:48):
we who might live in the disability community in our
own little bubble know very well that it isn't There's
still so much there that needs to be better unders thought.
Speaker 2 (06:02):
Absolutely, Peter, I totally agree with you absolutely. I mean,
it really does affect people in different life stages. And
then you know, different life stages bring up different things
for people. So you know, whether, as you said, you're
a young person leaving school you know, and off into
the big wide world of further education or work, you know,
those have different implications for you when you make perhaps
(06:23):
a wheelchair user or someone who uses another form of
mobility device.
Speaker 3 (06:29):
But then even into later life like the retirement.
Speaker 2 (06:32):
You know, and you know the challenges with health care,
you know, trying to get I know, as a woman
living with muscular industry, it's hard to even get things
like mammograms that are wheelchair accessible. You know, having perhaps
means isn't all that easy in a doctor's office when
there's no hoist to get you onto a bed or
(06:52):
things like that. So I think that's where connection and
peer support and like getting that right information, getting in
the loop with people and other organizations, and yeah, that's
really really valuable for people because often you can be out,
you know, sort of living your life and you come
up against these struggles and challenges and you just don't
(07:15):
really know what to do. So it's really great if
you can connect with other people. And usually it's the
case that someone's experienced that same similar situation and they
can offer some really valuable wisdom and guidance. So it's
also really nice, I guess emotionally to know that we're
not alone.
Speaker 1 (07:32):
I'm not too sure whether this question is appropriate, but
I have to ask you because I feel it's an
area that many people ignore, and that's the fact that
with a progressive disability. Do people in the support groups
sometimes find it confronting to see what their future might
look like? Or is there something empowering in seeing that,
(07:54):
knowing that people still go forward and live, you know,
really great lives despite that progression of their disability.
Speaker 2 (08:03):
Yeah, that's a really really good question, Peter. I think,
you know, it can be both. I think it can
really be. You know, at times, people do find it
quite confronting to see you know, often kids who may
have a diagnosis at say three or four years old,
they might meet other people who might be you know,
(08:24):
more adults. They might see that they're using a wheelchair,
or they might see that they're using bipop or you know,
not being able to.
Speaker 3 (08:32):
Feed themselves or things like that.
Speaker 2 (08:33):
Although that can be confronting, it also can be reassuring
that you know, I know for myself my own personal
stories that I was married to Danny and he had
to shen Muscular District and he lived till he was
forty years old. Unfortunately lost him some time ago now,
but for him to have had that forty years. A
(08:54):
lot of the doctors only you know, used to have
a life expectancy. They would tell the families maybe only
to be fifteen or twenty years old, that the person
will live. And when I tell young families my husband
was forty when he passed like that, although confronting, was
also a real sense of hope, and you know, I
(09:15):
tell tell them about his life that he lived, which
was a very full life. So yeah, I guess to
answer your question, it can be a little bit daunting
to know about the realities of conditions and what may happen,
but it's also really empowering and inspiring to actually see people,
despite the challenges that they live with, to go on
and live really full and good lives, you know, happy
(09:38):
and fulfilled lives.
Speaker 1 (09:42):
I think that just really shows how important it is
to have lived experience and how powerful that can be,
because I'm sure when you're supporting and consulting with young
people with muscular dystrophy, to see you living your life
can be really powerful for them. You just have a
different level of knowledge and understanding that not even their
(10:05):
parents may necessarily have. And I think that's so important
and why disability having our own community is really important,
because really it's only us who understand what it's like
from our perspective. That's why I think parent groups are
really important for that group as well, because as the
(10:26):
disabled quote unquote child myself, I don't understand what it's
like to have a disabled child. I just know what
it's like to be the disabled person. I'm really interested
to hear about how your disability was framed to you
as a child, and how you keep that in mind
when educating kids of today, and how that might be different.
Speaker 2 (10:50):
You're so spot on, Peter. It's lovely to speak to
someone who really gets it, you know. Even though the
doctors did paint a bit of a gloomy picture about
my life, unfortunately, my parents were like, well, we're not
going to let any of that stop her or stop
us giving her the most opportunities. I'm not sure if
it's an innate personality thing or if it's something I've
(11:13):
developed over.
Speaker 3 (11:14):
Time, but I just use what I can.
Speaker 2 (11:17):
My strengths are what I use, So I use humor
and I use my not being shy type of personality
to kind of connect with people and to make friends
and to see, you know, what we can offer each other.
And I guess I've taken that into my adult life
as well.
Speaker 1 (11:35):
I wanted to go back and talk about the young
people who have muscular dystrophy today that you see, as
you know, Jackson is part of this episode that the
listeners would have either heard at the start or at
the end. I'm not too sure yet, but can you
see a difference between how disability is viewed by the
younger generations those of those of us who do have
(11:58):
disabilities or do you think it's just how your parents
bring you up and that perspective and you're innate personality
as you were talking about yourself, how do you feel
the younger generation with disabilities are today?
Speaker 2 (12:13):
I think it can be really challenging for some people to,
you know, because along with physical disability, there can be
other things that come with that. Some people do really
struggle emotionally and psychologically with accepting their life and the
things that they're not able to do themselves.
Speaker 3 (12:33):
You know, it's not all bells and whistles, it's not
all roses for a lot of people.
Speaker 2 (12:39):
Parents are often and young people are often looking at
what they can't do, Whereas I think it's just really
important to focus what you can do and you know,
leave the rest behind, because you know it just it's
not healthy to focus on what you can't do. It's
really much more empowering and positive live to be able
(13:01):
and more healthy to be able to look at what
you can do. I just know the importance of finding
your finding your niche, finding your thing what makes you happy.
So whether it's sport, whether it's art, whatever your thing
is that keeps you going, you got to find that,
You got to you got to keep up with it.
And I think young people with the disability just need
(13:23):
that little bit maybe more extra support sometimes to find
those things and to be able to find accessible hobbies,
accessible passions. Also connecting with kids that do have similar
conditions to them and live some similar challenges.
Speaker 3 (13:39):
Like you know, having to.
Speaker 2 (13:40):
Be rolled over in the middle of the like multiple times,
or needing a bipattern machine on to breathe overnight, or
having someone else to feed them, or being on being
on entrol feeding or.
Speaker 3 (13:53):
Something like that.
Speaker 2 (13:53):
You know, those kind of experiences are really that what
you were saying earlier about with only the ones who
really live it. We're the ones who have that only
very unique perspective. So being able to connect with others
and find out how they're managing it, both emotionally and practically,
is so.
Speaker 3 (14:13):
So so helpful for people, and particularly for people who
live in regional and remote areas.
Speaker 2 (14:20):
You know, they might be the only person in their
town that uses a power wheelchair, you know.
Speaker 3 (14:26):
The only person.
Speaker 2 (14:27):
So for them to be able to meet other people
who who do that as well or live their life
that way, that's a very powerful thing.
Speaker 1 (14:37):
I'm really interested to talk to someone like myself who
does live independently and manages your own NDIS package. How
do you advise people in the muscular distriphine near Stockwales
network in and around living independently, living to their best
ability and managing the NDAs.
Speaker 2 (14:59):
Wow, that's a big question. Peter, but I'll try my best, haha,
but a great one. And I'm really great to really
glad to meet someone elsewhere that is living independently, because
I think, to me, that's one of the most important
achievements that I've had in my life.
Speaker 3 (15:15):
I think I was nineteen when I said to my mom, Mom, I'm.
Speaker 2 (15:18):
Getting engaged and moving out of home, and she looked
at me and said, what about the saucepans?
Speaker 3 (15:25):
And I guess that was my mum's way of saying,
who will cook for you? Who will look after you?
No one can look after you better.
Speaker 2 (15:30):
Than me, you know, all that kind of thing that
you get from parents, and you know, a lover. She's
a great mum, and she was just worried. I guess
also to know that my partner at the times, you know, Danny,
also had a significant physical disability.
Speaker 3 (15:45):
But I was like, Mum, there's this thing good home care, Like,
I'm sure we can sort it out.
Speaker 2 (15:50):
It's a really important thing to be able to live
the life you want under your own you know, in
your own terms, and you know, recruit your own support
work as the people you choose, and not just have
the people that have chosen that turn up on your
door at seven pm and are ready to put you.
Speaker 3 (16:06):
To bed, And I remember saying to them that I'm
not ready to go to bed. It's not even dark yet.
Speaker 2 (16:12):
For me, it's very important to have full control and
choice over who's coming into your home, when they're coming
into your home, and yeah, the task that they're doing
and how they're doing those tasks. So I just don't
say them go off and cook my dinner. I'll go
into the kitchen with them and sit with them and say,
(16:33):
could you please drop that onion this way?
Speaker 3 (16:35):
Could you turn on the oven? Could you do this?
You know, and we do it together.
Speaker 2 (16:39):
Because I really see my support worker as an extension
of my arms and someone who's there to support me
to do the things I want to do. It's a
very supportive culture that I try to have in my
team so that I you know, have every six months,
we might have a team meeting, but we have that
team meeting at the pub, and you know, everyone has
(17:00):
dinner and they get to know each other and they're
you know, get to know each other's families, and you know,
then they're more likely to be want to swap with
each other when they're you know, when someone's off sick,
someone's more likely to cover them if they know them
and they understand them, and you know, they get to
know a bit of a bond together.
Speaker 3 (17:17):
But yeah, I think the NDAs is a great thing.
Speaker 1 (17:20):
You know.
Speaker 3 (17:20):
I think it's a shame that the NDAs.
Speaker 2 (17:22):
Has become a bit of a four letter word because
it's inherently what we wanted and advocated for for so long.
Speaker 3 (17:31):
To have a scheme that could support us like this, no.
Speaker 2 (17:35):
Matter where we live in Australia and no matter what
disability we have, and you know, all of those inequities
that used to happen.
Speaker 3 (17:43):
I think it's very important that we preserve that we
preserve the.
Speaker 2 (17:47):
Scheme and make sure that it continues to support people
into the future.
Speaker 1 (17:53):
Yeah, it's completely changed my life, So I completely agree
with you. NDIS is so fundamental to make and back
to what you were saying before in and around living independently.
While it's a cliche and doesn't necessarily relate to disabled
people as much, you can't be what you can't see
because clearly you went and lived independently, possibly without an
(18:17):
example of how to do it. You just worked it
out between the support network you had at the time.
But I'm sure that's really empowering to know that that
can be somebody's future for the people that you work
with at Muscular Dystrophy in New South Wales. When we
think about the future, the future of disability, what do
(18:37):
you hope for people with muscular dystrophy and disabilities as
a whole.
Speaker 2 (18:43):
Yeah, I just want people to be able to do
what they want to do in their life, like and
not have so much, so much, so.
Speaker 3 (18:51):
Many barriers in their way.
Speaker 2 (18:53):
Like I was talking to a young man from Orange
in regional New South Wales last week and he's applied
for SDA funding which has supported disabilit accommodation so that
he can move to Sydney and you know sort of
start his life. He's just finished UNI and you know
he's graduated from a Comm's degree and he's ready to
(19:13):
start well the work and you know, start living his
exciting life. And yeah, he's I think seven months he's
been waiting for the NBAS to get back to him
about a plan review where he's you know, he's done
all the right things and you know he's applied for
SDA and he's done all the otel assessments and he's.
Speaker 3 (19:33):
Done all the forms and blah blah blah blah, and he's.
Speaker 2 (19:36):
Rung them eight times with no response, like no, nothing,
and you just think that's not good enough. So yeah,
I just would like young people to be able to
go and often do their things, you know, with support
and information and encouragement, and to not have things in
their way.
Speaker 1 (19:58):
Hi.
Speaker 4 (19:58):
My name's Justin Taylor. I'm eighteen and I have medicon
Division muscular distrophe, which means I am a full time
wheelchair user.
Speaker 1 (20:07):
It's such a pleasure to have you on the podcast today, Jackson.
Thank you so much for being here. As I would
have explained in the introduction, this is a special episode
focusing on m md NSW. My goodness, my dyslexia just
clicked in right then. And I understand you've been part
(20:27):
of the organization for several years now. Why did you
first get involved with the organization?
Speaker 4 (20:35):
Well, it was I've just been around Muscular Distriviet News
of Wells forever, so it just kind of happened quite naturally,
to be honest. I just think like there's so many
good people that you know, their cares, the staff, the
other campers involved, like the other participants, you know, they're
all absolutely amazing people. I volunteered recently with them to
(20:59):
help out in a care of training day where they
had all the cares going to the camp for the
first time and they're learning, you know, how to use
a hoist and how to do all this stuff. The
main thing I do when I'm teaching people, whether it
be when I'm speaking at one of the training days
which I did a little while ago, or out the
retreat itself, is I usually just tell them that, like a,
(21:25):
if they're confident, I'm confident, and that's I find that
so many cares like get better at it once they
know that.
Speaker 3 (21:33):
I'm like, there's.
Speaker 4 (21:35):
A mutual confidence, if that makes sense. Like I always
say that you just need to be confident in yourself
to learn, because then I'll feel more comfy with that.
B I will talk to people, I will communicate my
needs so if they are not confident, I will always
be there to support them.
Speaker 1 (21:56):
Do you think your confidence has been fostered through being
part of MDY, New South Wales.
Speaker 4 (22:04):
I do think it's helped just being able to see
so many other people we just live their best life
when they have a disability I think it really is
quite inspiring just seeing you know, various people just down
about their life. You know, we're not being hindered at
any certain way. We're just we're going around, We're all,
you know, we're going through the motions of life as
(22:26):
everyone else is. How's just you know, the motions we
have are a bit rockier. My type in particular, medicine
deficient muscular distrip FEE. It's very rare. Like I think
I've met like five people or something with the condition
full stop, and they're all like not much older than me,
(22:47):
So it's like we're all kind of just going through
it all about together basically. So then you've got that.
But in the sort of MD community at large, you know,
ignoring my specific I would say it definitely does help
just to see, you know, there's a lot of strong
people that I've met through MDNSW and just the wider
(23:08):
disability community in general that you know, really do you know,
provide a lot of hope and just make you a wawer,
you know, nothing stopping us.
Speaker 1 (23:19):
I love to hear that level of confidence and clearly
you're very comfortable with the person that you are, which
is just makes me so happy. Because I know that
that's not the case for so many young disabled people,
and I'm sure that there's many people listening to this
episode who might be young like yourself, who aren't comfortable
(23:43):
with their disability, and it's just fantastic to have a
voice out there like yours Jackson, to really say, you
know what, this is life, It's fine, in fact, can
be actually great.
Speaker 4 (23:58):
Yeah, Like I always like, I can't change the fact
that I'm in a wheelchair, so why should I mope
about it? That's how I've always been because like may
as well, made the most of it. Right when I
was younger, it was like it wasn't like a hey
you have muscular disc That wasn't that wasn't part of it.
(24:21):
It was just like, well, I guess I'm playing more
Mario card than everyone else. My mum wanted me to
join a sport when I was really young because I
just wasn't doing much with myself. I was playing a
lot of games and just sitting inside a lot, not
making much social interaction. And she found powers of football.
(24:44):
You know, It's been a really really fun sport and
it just means so much to me. The amount of
you know, connections I made and the amount of growth
I've had in that sport, both as a person and
as a player, I just, you know, a sport a
to have that connection. I applied a little while ago
(25:06):
as a local hero at Westfield Paramatter like they have
like a program, but they donate up to twenty thousand
dollars to people who are making positive change in the
sort of local area. Third and seven would get five
thousand bucks and the winner gets twenty thousand dollars. And
I'm very happy to announce, but you got twenty thousand dollars. Congratulations,
(25:30):
Thank you so much. We got a bunch of public votes,
so we will now like twenty thousand. Bus is going
to help us get another powerchair in because powerchairs are
not cheap. If you're not aware of a sports chair,
it's sort of like it's lower to the ground than
an average day chair, like an average permobile or whatever.
(25:53):
It's a lot faster in acceleration, it's a lot more nimble.
But if you were to put it in any environment
except for sport, it just doesn't work. You try putting
it up a ramp, it just doesn't want to. You
put it on grass, it doesn't want to. So they're
very special built for sports and winning this ramp, which
(26:14):
is very exciting, is definitely going to help us grow
the wonderful community that is Powerchure Football.
Speaker 1 (26:22):
That's amazing. I suppose it's a bit like an F
one car versus a day today car that we all
use to get around our life. Really if one car
is fast and is low to the ground. But I'm
not too sure how it would go in traffic. So
(26:42):
is it something that you would like to pissue later
on in your life, Jackson, or do you feel like
maybe podcasting or media is the right thing for you.
I know that you have your very own podcast, so
why don't you tell us about that.
Speaker 4 (26:59):
Yes, so I've been involved, as I said, with the
Patch of Football for ten years, and this year I decided,
you know, I have a big passion in podcasting, so
I decided to use the two and create the Powered
by Football podcast. We just sort of delve into the
sport and we get to know, you know, what the
results are, what the table's looking like, and just have
(27:22):
a chat. We just you know, they're bite sized episodes.
It's like ten minutes once a week, and they're currently
not running these episodes as their seasons finished. It usually
runs between February and July. But you know, once the
season does roll around come the end of next year,
you will definitely be hearing a lot of my voice
(27:43):
on the podcasting feed, which is on Spotify, Apple, YouTube,
all those I'm also currently studying a Bachelor of Communications
majoring in journalism at Western Sydney University. I want to
go into podcasting full time, and that is my sort
of means to an end. You know a lot of
(28:03):
people say, if you could take a pill and walk tomorrow,
would you, And I have always said no because to me,
it's like, I live a life that's different and I
hope to continue to be different, and I hope to
continue to be myself and you know, my disability is
part of my identity.
Speaker 1 (28:25):
Thank you for listening to this week's episode, and thank
you Carolyn and Jackson for your time. I thoroughly enjoyed
speaking to both of you. If you did enjoy this
episode listening to it in your ears, can I encourage
you to leave it rating and review on Apple or Spotify,
(28:45):
share the show on social media, or go follow me
over on Instagram. My handle is at Peter hook spelt p. E. T. A.
Ho Ok. You can always get into touch and send
me an email my email addresses I can't stand podcast
at gmail dot com. Thank you again all for listening,
(29:09):
and until next week, have a good one guys bye.
I would like to respectfully acknowledge they were wondery and
bun wrong people of the call and nation of which
I record the podcast today, and I pay my respects
(29:30):
to 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 is with
two amazing disabled individuals, Carolyn Campbell McLain and Jackson Taylor,
(00:31):
both of which have come on the show to share
what their life is like and how they're supported by
Muscular Dystrophy New South Wales. It was really interesting to
see a difference in perspective both as male and female,
and also a difference in age. Jackson is in his
(00:52):
late teens. So without any further ado, let's get into it.
Speaker 2 (01:07):
Hi, Peter and everybody. My name is Carolyn Campbell McLain.
It's great to be on here today to talk about
my work at Muscular District in New South Wales. So yeah,
I'm a senior Community Support Specialist.
Speaker 3 (01:22):
So I had a new title, so I almost forgot
what it was.
Speaker 2 (01:24):
But basically my job is to support people who live
with muscular distrophy and any of the seventy different types
of neuromuscular conditions and their families and give them information connection.
We have lots of events and programs, and so, yeah,
my job is really to get some education and going
(01:46):
out there in the community about what muscular distriphy is
and the services and supports that are available to people
that may be living with those neuromuscular conditions.
Speaker 1 (02:00):
The main gaps that you find that people still don't
understand about muscular dystrophy that you're constantly re educating the
community about.
Speaker 3 (02:09):
Yeah, that's a really good question, Peter.
Speaker 2 (02:11):
So basically, I guess even the name is hard to
say and remember, but muscular dystrophy can sometimes get muddled up,
like MD is the short form, but sometimes that can
get muddled up with motor neurone disease, which is often MND.
But just to be clear that neuromuscular conditions, which is
(02:32):
like an umbrella for the muscular dystrophies, there are any
kind of physical disability that relate to progressive weakness in
either the nerves.
Speaker 3 (02:42):
Or the muscles.
Speaker 2 (02:44):
When someone might be diagnosed, they could be diagnosed as
a child or perhaps even before birth.
Speaker 3 (02:51):
They could be.
Speaker 2 (02:52):
Diagnosed as child, as an adult, they could be diagnosed
later on in life. So it's conditions that affect people
all different life stages, and I guess, depending on their
life stage when they're diagnosed, that has a huge impact
on their needs and the supports that they might find
help for.
Speaker 1 (03:13):
That.
Speaker 2 (03:13):
I live with a condition called spinal muscular atrophy, which
is SMA for sure, and I was diagnosed as a
very young child, and I don't ever remember not having
a disability. And I've been a wheelchair user for you know,
nearly about.
Speaker 3 (03:29):
Forty eight years now, so always my whole life.
Speaker 2 (03:33):
So for me, it's been a long journey of I guess,
acceptance in terms of that this is my life and
this I haven't really known any other difference in my life.
Whereas people who may be diagnosed or have symptoms on set,
you know, later on in life, they will have, you know,
(03:53):
various degrees of challenging psychological issues to do with you know,
the changes in and in you know, their walking, whether
their mobility, mobility is affected, people might have difficulty swallowing
or breathing, and all sorts of physical functions that people
(04:15):
you know usually just take for granted can be affected
by the different muscular distrophies. Even getting a diagnosis sometimes
in the first place, can be challenging. Some people actually
spend many years getting going through investigations, testing and trying
to find the right specialists to diagnose conditions. So we
(04:37):
usually find that when people do have a diagnosis, that's
much more empowering for them because they can then further,
you know, seek further information, and they can connect with
other people that live with that condition. And I guess,
as someone who runs what we call the peer Connect
program at md New South Wales, connecting with other people
(04:59):
we've lived in experience is there very powerful.
Speaker 1 (05:04):
And I have to say what you've just spoken about
really encompasses how challenging it can be to have a disability, because,
like everyone, we age and we face different challenges as
we get older. So I'm sure that's where a lot
of your challenge would lie in your job, that in
each life stage brings up different challenges. Like I'm sure
(05:26):
you'll agree with me, things like education can be super
challenging for a young person with a disability. Getting employed
is a massive, massive issue for people in a community
and also for families and societies or society in general
to not see our disabilities as a tragedy, even though
(05:48):
we who might live in the disability community in our
own little bubble know very well that it isn't There's
still so much there that needs to be better unders thought.
Speaker 2 (06:02):
Absolutely, Peter, I totally agree with you absolutely. I mean,
it really does affect people in different life stages. And
then you know, different life stages bring up different things
for people. So you know, whether, as you said, you're
a young person leaving school you know, and off into
the big wide world of further education or work, you know,
those have different implications for you when you make perhaps
(06:23):
a wheelchair user or someone who uses another form of
mobility device.
Speaker 3 (06:29):
But then even into later life like the retirement.
Speaker 2 (06:32):
You know, and you know the challenges with health care,
you know, trying to get I know, as a woman
living with muscular industry, it's hard to even get things
like mammograms that are wheelchair accessible. You know, having perhaps
means isn't all that easy in a doctor's office when
there's no hoist to get you onto a bed or
(06:52):
things like that. So I think that's where connection and
peer support and like getting that right information, getting in
the loop with people and other organizations, and yeah, that's
really really valuable for people because often you can be out,
you know, sort of living your life and you come
up against these struggles and challenges and you just don't
(07:15):
really know what to do. So it's really great if
you can connect with other people. And usually it's the
case that someone's experienced that same similar situation and they
can offer some really valuable wisdom and guidance. So it's
also really nice, I guess emotionally to know that we're
not alone.
Speaker 1 (07:32):
I'm not too sure whether this question is appropriate, but
I have to ask you because I feel it's an
area that many people ignore, and that's the fact that
with a progressive disability. Do people in the support groups
sometimes find it confronting to see what their future might
look like? Or is there something empowering in seeing that,
(07:54):
knowing that people still go forward and live, you know,
really great lives despite that progression of their disability.
Speaker 2 (08:03):
Yeah, that's a really really good question, Peter. I think,
you know, it can be both. I think it can
really be. You know, at times, people do find it
quite confronting to see you know, often kids who may
have a diagnosis at say three or four years old,
they might meet other people who might be you know,
(08:24):
more adults. They might see that they're using a wheelchair,
or they might see that they're using bipop or you know,
not being able to.
Speaker 3 (08:32):
Feed themselves or things like that.
Speaker 2 (08:33):
Although that can be confronting, it also can be reassuring
that you know, I know for myself my own personal
stories that I was married to Danny and he had
to shen Muscular District and he lived till he was
forty years old. Unfortunately lost him some time ago now,
but for him to have had that forty years. A
(08:54):
lot of the doctors only you know, used to have
a life expectancy. They would tell the families maybe only
to be fifteen or twenty years old, that the person
will live. And when I tell young families my husband
was forty when he passed like that, although confronting, was
also a real sense of hope, and you know, I
(09:15):
tell tell them about his life that he lived, which
was a very full life. So yeah, I guess to
answer your question, it can be a little bit daunting
to know about the realities of conditions and what may happen,
but it's also really empowering and inspiring to actually see people,
despite the challenges that they live with, to go on
and live really full and good lives, you know, happy
(09:38):
and fulfilled lives.
Speaker 1 (09:42):
I think that just really shows how important it is
to have lived experience and how powerful that can be,
because I'm sure when you're supporting and consulting with young
people with muscular dystrophy, to see you living your life
can be really powerful for them. You just have a
different level of knowledge and understanding that not even their
(10:05):
parents may necessarily have. And I think that's so important
and why disability having our own community is really important,
because really it's only us who understand what it's like
from our perspective. That's why I think parent groups are
really important for that group as well, because as the
(10:26):
disabled quote unquote child myself, I don't understand what it's
like to have a disabled child. I just know what
it's like to be the disabled person. I'm really interested
to hear about how your disability was framed to you
as a child, and how you keep that in mind
when educating kids of today, and how that might be different.
Speaker 2 (10:50):
You're so spot on, Peter. It's lovely to speak to
someone who really gets it, you know. Even though the
doctors did paint a bit of a gloomy picture about
my life, unfortunately, my parents were like, well, we're not
going to let any of that stop her or stop
us giving her the most opportunities. I'm not sure if
it's an innate personality thing or if it's something I've
(11:13):
developed over.
Speaker 3 (11:14):
Time, but I just use what I can.
Speaker 2 (11:17):
My strengths are what I use, So I use humor
and I use my not being shy type of personality
to kind of connect with people and to make friends
and to see, you know, what we can offer each other.
And I guess I've taken that into my adult life
as well.
Speaker 1 (11:35):
I wanted to go back and talk about the young
people who have muscular dystrophy today that you see, as
you know, Jackson is part of this episode that the
listeners would have either heard at the start or at
the end. I'm not too sure yet, but can you
see a difference between how disability is viewed by the
younger generations those of those of us who do have
(11:58):
disabilities or do you think it's just how your parents
bring you up and that perspective and you're innate personality
as you were talking about yourself, how do you feel
the younger generation with disabilities are today?
Speaker 2 (12:13):
I think it can be really challenging for some people to,
you know, because along with physical disability, there can be
other things that come with that. Some people do really
struggle emotionally and psychologically with accepting their life and the
things that they're not able to do themselves.
Speaker 3 (12:33):
You know, it's not all bells and whistles, it's not
all roses for a lot of people.
Speaker 2 (12:39):
Parents are often and young people are often looking at
what they can't do, Whereas I think it's just really
important to focus what you can do and you know,
leave the rest behind, because you know it just it's
not healthy to focus on what you can't do. It's
really much more empowering and positive live to be able
(13:01):
and more healthy to be able to look at what
you can do. I just know the importance of finding
your finding your niche, finding your thing what makes you happy.
So whether it's sport, whether it's art, whatever your thing
is that keeps you going, you got to find that,
You got to you got to keep up with it.
And I think young people with the disability just need
(13:23):
that little bit maybe more extra support sometimes to find
those things and to be able to find accessible hobbies,
accessible passions. Also connecting with kids that do have similar
conditions to them and live some similar challenges.
Speaker 3 (13:39):
Like you know, having to.
Speaker 2 (13:40):
Be rolled over in the middle of the like multiple times,
or needing a bipattern machine on to breathe overnight, or
having someone else to feed them, or being on being
on entrol feeding or.
Speaker 3 (13:53):
Something like that.
Speaker 2 (13:53):
You know, those kind of experiences are really that what
you were saying earlier about with only the ones who
really live it. We're the ones who have that only
very unique perspective. So being able to connect with others
and find out how they're managing it, both emotionally and practically,
is so.
Speaker 3 (14:13):
So so helpful for people, and particularly for people who
live in regional and remote areas.
Speaker 2 (14:20):
You know, they might be the only person in their
town that uses a power wheelchair, you know.
Speaker 3 (14:26):
The only person.
Speaker 2 (14:27):
So for them to be able to meet other people
who who do that as well or live their life
that way, that's a very powerful thing.
Speaker 1 (14:37):
I'm really interested to talk to someone like myself who
does live independently and manages your own NDIS package. How
do you advise people in the muscular distriphine near Stockwales
network in and around living independently, living to their best
ability and managing the NDAs.
Speaker 2 (14:59):
Wow, that's a big question. Peter, but I'll try my best, haha,
but a great one. And I'm really great to really
glad to meet someone elsewhere that is living independently, because
I think, to me, that's one of the most important
achievements that I've had in my life.
Speaker 3 (15:15):
I think I was nineteen when I said to my mom, Mom, I'm.
Speaker 2 (15:18):
Getting engaged and moving out of home, and she looked
at me and said, what about the saucepans?
Speaker 3 (15:25):
And I guess that was my mum's way of saying,
who will cook for you? Who will look after you?
No one can look after you better.
Speaker 2 (15:30):
Than me, you know, all that kind of thing that
you get from parents, and you know, a lover. She's
a great mum, and she was just worried. I guess
also to know that my partner at the times, you know, Danny,
also had a significant physical disability.
Speaker 3 (15:45):
But I was like, Mum, there's this thing good home care, Like,
I'm sure we can sort it out.
Speaker 2 (15:50):
It's a really important thing to be able to live
the life you want under your own you know, in
your own terms, and you know, recruit your own support
work as the people you choose, and not just have
the people that have chosen that turn up on your
door at seven pm and are ready to put you.
Speaker 3 (16:06):
To bed, And I remember saying to them that I'm
not ready to go to bed. It's not even dark yet.
Speaker 2 (16:12):
For me, it's very important to have full control and
choice over who's coming into your home, when they're coming
into your home, and yeah, the task that they're doing
and how they're doing those tasks. So I just don't
say them go off and cook my dinner. I'll go
into the kitchen with them and sit with them and say,
(16:33):
could you please drop that onion this way?
Speaker 3 (16:35):
Could you turn on the oven? Could you do this?
You know, and we do it together.
Speaker 2 (16:39):
Because I really see my support worker as an extension
of my arms and someone who's there to support me
to do the things I want to do. It's a
very supportive culture that I try to have in my
team so that I you know, have every six months,
we might have a team meeting, but we have that
team meeting at the pub, and you know, everyone has
(17:00):
dinner and they get to know each other and they're
you know, get to know each other's families, and you know,
then they're more likely to be want to swap with
each other when they're you know, when someone's off sick,
someone's more likely to cover them if they know them
and they understand them, and you know, they get to
know a bit of a bond together.
Speaker 3 (17:17):
But yeah, I think the NDAs is a great thing.
Speaker 1 (17:20):
You know.
Speaker 3 (17:20):
I think it's a shame that the NDAs.
Speaker 2 (17:22):
Has become a bit of a four letter word because
it's inherently what we wanted and advocated for for so long.
Speaker 3 (17:31):
To have a scheme that could support us like this, no.
Speaker 2 (17:35):
Matter where we live in Australia and no matter what
disability we have, and you know, all of those inequities
that used to happen.
Speaker 3 (17:43):
I think it's very important that we preserve that we
preserve the.
Speaker 2 (17:47):
Scheme and make sure that it continues to support people
into the future.
Speaker 1 (17:53):
Yeah, it's completely changed my life, So I completely agree
with you. NDIS is so fundamental to make and back
to what you were saying before in and around living independently.
While it's a cliche and doesn't necessarily relate to disabled
people as much, you can't be what you can't see
because clearly you went and lived independently, possibly without an
(18:17):
example of how to do it. You just worked it
out between the support network you had at the time.
But I'm sure that's really empowering to know that that
can be somebody's future for the people that you work
with at Muscular Dystrophy in New South Wales. When we
think about the future, the future of disability, what do
(18:37):
you hope for people with muscular dystrophy and disabilities as
a whole.
Speaker 2 (18:43):
Yeah, I just want people to be able to do
what they want to do in their life, like and
not have so much, so much, so.
Speaker 3 (18:51):
Many barriers in their way.
Speaker 2 (18:53):
Like I was talking to a young man from Orange
in regional New South Wales last week and he's applied
for SDA funding which has supported disabilit accommodation so that
he can move to Sydney and you know sort of
start his life. He's just finished UNI and you know
he's graduated from a Comm's degree and he's ready to
(19:13):
start well the work and you know, start living his
exciting life. And yeah, he's I think seven months he's
been waiting for the NBAS to get back to him
about a plan review where he's you know, he's done
all the right things and you know he's applied for
SDA and he's done all the otel assessments and he's.
Speaker 3 (19:33):
Done all the forms and blah blah blah blah, and he's.
Speaker 2 (19:36):
Rung them eight times with no response, like no, nothing,
and you just think that's not good enough. So yeah,
I just would like young people to be able to
go and often do their things, you know, with support
and information and encouragement, and to not have things in
their way.
Speaker 1 (19:58):
Hi.
Speaker 4 (19:58):
My name's Justin Taylor. I'm eighteen and I have medicon
Division muscular distrophe, which means I am a full time
wheelchair user.
Speaker 1 (20:07):
It's such a pleasure to have you on the podcast today, Jackson.
Thank you so much for being here. As I would
have explained in the introduction, this is a special episode
focusing on m md NSW. My goodness, my dyslexia just
clicked in right then. And I understand you've been part
(20:27):
of the organization for several years now. Why did you
first get involved with the organization?
Speaker 4 (20:35):
Well, it was I've just been around Muscular Distriviet News
of Wells forever, so it just kind of happened quite naturally,
to be honest. I just think like there's so many
good people that you know, their cares, the staff, the
other campers involved, like the other participants, you know, they're
all absolutely amazing people. I volunteered recently with them to
(20:59):
help out in a care of training day where they
had all the cares going to the camp for the
first time and they're learning, you know, how to use
a hoist and how to do all this stuff. The
main thing I do when I'm teaching people, whether it
be when I'm speaking at one of the training days
which I did a little while ago, or out the
retreat itself, is I usually just tell them that, like a,
(21:25):
if they're confident, I'm confident, and that's I find that
so many cares like get better at it once they
know that.
Speaker 3 (21:33):
I'm like, there's.
Speaker 4 (21:35):
A mutual confidence, if that makes sense. Like I always
say that you just need to be confident in yourself
to learn, because then I'll feel more comfy with that.
B I will talk to people, I will communicate my
needs so if they are not confident, I will always
be there to support them.
Speaker 1 (21:56):
Do you think your confidence has been fostered through being
part of MDY, New South Wales.
Speaker 4 (22:04):
I do think it's helped just being able to see
so many other people we just live their best life
when they have a disability I think it really is
quite inspiring just seeing you know, various people just down
about their life. You know, we're not being hindered at
any certain way. We're just we're going around, We're all,
you know, we're going through the motions of life as
(22:26):
everyone else is. How's just you know, the motions we
have are a bit rockier. My type in particular, medicine
deficient muscular distrip FEE. It's very rare. Like I think
I've met like five people or something with the condition
full stop, and they're all like not much older than me,
(22:47):
So it's like we're all kind of just going through
it all about together basically. So then you've got that.
But in the sort of MD community at large, you know,
ignoring my specific I would say it definitely does help
just to see, you know, there's a lot of strong
people that I've met through MDNSW and just the wider
(23:08):
disability community in general that you know, really do you know,
provide a lot of hope and just make you a wawer,
you know, nothing stopping us.
Speaker 1 (23:19):
I love to hear that level of confidence and clearly
you're very comfortable with the person that you are, which
is just makes me so happy. Because I know that
that's not the case for so many young disabled people,
and I'm sure that there's many people listening to this
episode who might be young like yourself, who aren't comfortable
(23:43):
with their disability, and it's just fantastic to have a
voice out there like yours Jackson, to really say, you
know what, this is life, It's fine, in fact, can
be actually great.
Speaker 4 (23:58):
Yeah, Like I always like, I can't change the fact
that I'm in a wheelchair, so why should I mope
about it? That's how I've always been because like may
as well, made the most of it. Right when I
was younger, it was like it wasn't like a hey
you have muscular disc That wasn't that wasn't part of it.
(24:21):
It was just like, well, I guess I'm playing more
Mario card than everyone else. My mum wanted me to
join a sport when I was really young because I
just wasn't doing much with myself. I was playing a
lot of games and just sitting inside a lot, not
making much social interaction. And she found powers of football.
(24:44):
You know, It's been a really really fun sport and
it just means so much to me. The amount of
you know, connections I made and the amount of growth
I've had in that sport, both as a person and
as a player, I just, you know, a sport a
to have that connection. I applied a little while ago
(25:06):
as a local hero at Westfield Paramatter like they have
like a program, but they donate up to twenty thousand
dollars to people who are making positive change in the
sort of local area. Third and seven would get five
thousand bucks and the winner gets twenty thousand dollars. And
I'm very happy to announce, but you got twenty thousand dollars. Congratulations,
(25:30):
Thank you so much. We got a bunch of public votes,
so we will now like twenty thousand. Bus is going
to help us get another powerchair in because powerchairs are
not cheap. If you're not aware of a sports chair,
it's sort of like it's lower to the ground than
an average day chair, like an average permobile or whatever.
(25:53):
It's a lot faster in acceleration, it's a lot more nimble.
But if you were to put it in any environment
except for sport, it just doesn't work. You try putting
it up a ramp, it just doesn't want to. You
put it on grass, it doesn't want to. So they're
very special built for sports and winning this ramp, which
(26:14):
is very exciting, is definitely going to help us grow
the wonderful community that is Powerchure Football.
Speaker 1 (26:22):
That's amazing. I suppose it's a bit like an F
one car versus a day today car that we all
use to get around our life. Really if one car
is fast and is low to the ground. But I'm
not too sure how it would go in traffic. So
(26:42):
is it something that you would like to pissue later
on in your life, Jackson, or do you feel like
maybe podcasting or media is the right thing for you.
I know that you have your very own podcast, so
why don't you tell us about that.
Speaker 4 (26:59):
Yes, so I've been involved, as I said, with the
Patch of Football for ten years, and this year I decided,
you know, I have a big passion in podcasting, so
I decided to use the two and create the Powered
by Football podcast. We just sort of delve into the
sport and we get to know, you know, what the
results are, what the table's looking like, and just have
(27:22):
a chat. We just you know, they're bite sized episodes.
It's like ten minutes once a week, and they're currently
not running these episodes as their seasons finished. It usually
runs between February and July. But you know, once the
season does roll around come the end of next year,
you will definitely be hearing a lot of my voice
(27:43):
on the podcasting feed, which is on Spotify, Apple, YouTube,
all those I'm also currently studying a Bachelor of Communications
majoring in journalism at Western Sydney University. I want to
go into podcasting full time, and that is my sort
of means to an end. You know a lot of
(28:03):
people say, if you could take a pill and walk tomorrow,
would you, And I have always said no because to me,
it's like, I live a life that's different and I
hope to continue to be different, and I hope to
continue to be myself and you know, my disability is
part of my identity.
Speaker 1 (28:25):
Thank you for listening to this week's episode, and thank
you Carolyn and Jackson for your time. I thoroughly enjoyed
speaking to both of you. If you did enjoy this
episode listening to it in your ears, can I encourage
you to leave it rating and review on Apple or Spotify,
(28:45):
share the show on social media, or go follow me
over on Instagram. My handle is at Peter hook spelt p. E. T. A.
Ho Ok. You can always get into touch and send
me an email my email addresses I can't stand podcast
at gmail dot com. Thank you again all for listening,
(29:09):
and until next week, have a good one guys bye.
I would like to respectfully acknowledge they were wondery and
bun wrong people of the call and nation of which
I record the podcast today, and I pay my respects
(29:30):
to 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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