July 15, 2025 • 28 mins
This week Simon and Andrew take a moment to reflect by revisiting past conversations with four different guests who struck a chord with Simon for their leadership and advocacy work.
You'll hear from Nihal Iscel, WA Women’s Hall of Fame inductee for her advocacy work, about how she strives to bring people together to create community, and how resilience is an essential ingredient in becoming a leader yourself.
Linda de Rozario shares her personal experiences within the Deaf community and with Auslan, offering insightful reflections on the importance of connection, accessibility, and equality.
Lisa Burnette speaks about her experience with volunteering and all it's brought to her life and the lives of others, and shares her story of becoming a double amputee at 24 as a result of Meningococcal septicaemia. Lisa is the author of the book Learning to Walk, which you can find out more about here: lisaburnette.com.au
Finally, you'll hear from Ben Rowe, Executive Officer at Blind Sports WA and big advocate for building inclusion in the community. Ben played Goalball for Australia. Find out more about the work of Blind Sports WA here: blindsportswa.com.au
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:13):
Hello, I'm Simon Cheung and welcome to In Plain Sight,
a program where we highlight people who are making a
difference and impact within the disability sector and their community.
We shine a light on those who otherwise would be
hidden in plain sight. And it's a pleasure to bring
you these programmes on a weekly basis here on Vision
Australia Radio. This week we've got a special episode just
(00:36):
to mark a few different things happening. So we're in
a transition phase at the moment. You've noticed that we've
had our work experience, kid Andrew, on the program for
the last few weeks, and that's because my friend and
colleague Abby was away for a while, and she's going
to be putting some more time into her professional journalism career.
(00:57):
So unfortunately, she will be transitioning away from the program.
Abby will be with us in a few weeks time
to present with me a couple of shows, and in
the meantime, I'm going to try and get this young
fella here, Andrew, up to speed with being my producer
and co-host. And I welcome Andrew to the studio today. Hello, Andrew.
S2 (01:15):
Hello, Simon. How are you going?
S1 (01:17):
Very well. And it's good to be here in the
studio with you again today. And I'm looking forward to
this very special program that we're presenting.
S2 (01:25):
Yeah, it's actually great to be joining the program, Simon.
And for me, what we're doing today on the program
with highlighted segments from selected programs from this year and
also from late last year. It's a great opportunity for
me to chat with you about these highlights, as well
as just talk about the program in general.
S1 (01:43):
Yes, I've pulled out highlights from about four shows, and
I've chosen these people because they struck a chord with
me because they really do personify the leadership and advocacy
that is the main feature of our program. And Andrew,
what was the first person that we are going to
choose today?
S2 (02:02):
Well, first up, we have a segment from a program
from December last year that focused on the the International
Day of People with disability, which is on the 3rd
of December each year. Tell me about your guests that
you had on the program, Nihal.
S1 (02:14):
Nihal is someone I know reasonably well. She's a very
prominent figure within the blindness community here in Western Australia
and Australia. And her along with her sister Zeliha. They
are both totally blind and they were born in Turkey.
And why I've chosen Nihal and why I chose her
(02:35):
for that particular show, is that it was a great
demonstration of what Nihal sees as bringing people together and
creating community, and how to build up some resilience to
therefore become a leader yourself. And it was a really
great insight into forming and developing a sustaining leadership. And
(02:58):
that was part of the theme of the International Day
of People with disabilities for that year. What do you
think are the important methods of encouraging leadership amongst people
with disabilities.
S3 (03:16):
I just say, if you see an issue that are
disturbing you, that can be fixed with advocacy and activism,
do something, say something and be transparent, be honest and, um,
you know, just get out there and try and talk
(03:38):
to other people who might be like minded and work together.
You can't be a leader on your own. Impossible. You
need other people who agree with you and who can
take the baton and go forward with you.
S1 (03:52):
Someone who might be listening to this and might have
a disability themselves, or might have a friend or a
family member who has a disability and thinks, gee, how
does one become a leader? I'm struggling with my disability.
I don't think I can. What would you say to
someone like that, Niall?
S3 (04:10):
I would just say be resilient, keep pushing forward and
know your issues. If you know your issues and get
together with people with similar disabilities.
S1 (04:25):
Yes.
S3 (04:25):
And you learn a lot more from people with similar
disabilities than you would from your family who don't have
disabilities or from your other friends, close friends who don't
have disabilities. It's so important to have other people with
disabilities in your life.
S1 (04:45):
What would you say? 1 or 2 things that are
a major impact that we need to still work upon?
S3 (04:50):
I think one of the issues for people with disability
is employment. Definitely that we still need to work on.
Housing is another issue.
S1 (05:01):
We acknowledge that everyone in Australia is having difficulty with housing,
but just imagine having a disability on top of everything
else as well. That Impacts us even more so, especially
if you don't have a job.
S3 (05:18):
If you're a person with no disability. You could rent
a house, and if you're able to drive, you could
rent a house up in the hills somewhere where you
don't have, um, lots of public transport. If you're a
person who's blind, you need to be close to public transport.
You need to be close to the amenities. You know, um,
if you're a person who's a wheelchair user, you can't
(05:41):
just rent a place on the second floor, third floor
of an apartment if there is no lift. So you
are limited in your choice of housing.
S2 (05:53):
In February of this year, you spoke to Linda de
Rosario Simon. So tell me a bit more about that
program and your guests.
S1 (06:01):
Well, firstly, I was very excited to meet Linda because
she came very highly recommended from two very reliable sources.
And when I met Linda, I kept on thinking, I
know that surname de Rosario. And when I sat down
to talk to Linda, she said, yes. The reason you
know that surname is because my daughter is Madison de Rosario.
(06:25):
And for those who don't know, Madison is one of
Australia's leading Paralympic athletes, and she was the flag bearer
at the Paris Paralympic Games, which were held last year
in 2024. And she is a superstar. Highly recommend if
you don't know who Madison De Rosario is, check her out.
(06:46):
And the reason we were speaking to Linda was she
is one of the most interesting people I've ever met
because I don't know much about the deaf community, and
she gave us some fabulous personal and professional insights into Auslan,
which is the Australian Sign Language that people who are
(07:09):
deaf and hard of hearing use here in Australia. She
gave some personal insights because her parents are deaf and
she runs her own business providing professional Auslan interpretation for
the community. And I hope you enjoy that little segment
we've got to share with you now. So there is
(07:31):
different sign languages to use that terminology for different countries
around the world. Yes.
S4 (07:37):
Correct. Yes.
S1 (07:38):
And so how do a deaf person from Australia communicate
with a deaf person in Britain or France?
S4 (07:45):
Good question. So if a deaf person from Australia went
to England or Britain, um, it's very, very similar because
we had our language derived from them. So they have
a couple of variances. But if they were to go
to France are completely different. But the beauty about sign
language is it's visual. So a lot of it is gestural.
(08:07):
So body language. So a deaf person would be able
to communicate with a person from another country that uses
a different sign language better than a hearing person would
be able to speak to another person from a different
language because it's all visual.
S1 (08:19):
Linda, how did you get into becoming an Auslan interpreter?
S4 (08:23):
I had a life before my children. I had a
very good job, a 9 to 5, and when I
had children, I didn't want a 9 to 5. I
wanted to be at home. Mum and I had three
beautiful babies. But after the third, it was like, I
really need to use my brain a bit more. So
I didn't know which career I wanted to go into. Um,
(08:44):
my sister was already in Auslan interpreter and she was
living in New Zealand and she said, why don't you
just do do that. You have the language. Just then
you can pick and choose your jobs. So I did,
I studied for the year and then went straight into
interpreting in 96 and have been doing it ever since.
S1 (09:00):
Okay, now you just hinted there you had the language.
Tell us how you were introduced to the Auslan in
the first place.
S4 (09:06):
So my mother was profoundly deaf at birth. So my
first language is Auslan and my mother had seven children
and we all used sign language fluently. We learnt English
sort of through our aunties and more so when we
went to school.
S1 (09:22):
Can you give us an example of how Auslan is
a different language to to English?
S4 (09:29):
Sure.
S1 (09:30):
In spoken English.
S4 (09:31):
English, as we know, is linear. It's one word at
a time. You can only say one word at a
time and it's structured differently. So you have. And I
never got this right in school because it was my
second language. You have like a subject, a topic, time,
that sort of stuff. There's a there's a structure in
English in Auslan. It's time topic comment. So we will
(09:53):
say the time first. If there is time in that
sentence and then the topic and the comment. But sometimes
the topic can comment can get interchanged as well. So
if I said to you I'm going to the beach
tomorrow in sign language, I would say tomorrow go beach.
I wouldn't say I am going to the beach tomorrow,
it'll just be tomorrow. Because now you know when I'm talking.
(10:16):
It's about tomorrow. Where am I going? Beach. And I'm going.
So the structure is very, very different. Just like in
other spoken languages. The structure of how you say things
is different to English. Auslan is the same, but have
to remember that in Auslan it's a visual language. So
you have to give the visual.
S1 (10:36):
So how would you define the deaf community. And can
you tell us about the capital D in deaf.
S4 (10:42):
Sure. So yes, there are different pockets in the deaf community.
So the capital D that you refer to is if
somebody is born deaf, learn sign language as their language,
and then absorb themselves into the deaf community, they are
proud deaf people and they wear that capital D quite proudly.
(11:03):
The other deaf is a lowercase deaf. So if people
go hard of hearing or they have a hearing impairment,
but don't use the language and don't immerse in the community,
that's that category lowercase def. Um, they are more in
the hearing world than the deaf world.
S1 (11:18):
Do you see that things are improving in integration and
awareness of people who are deaf?
S4 (11:25):
Look, if I were to go back and say, okay,
through my through my life, yes, there's been improvement. Has
it been fast? Absolutely not. How have we got a
long way to go? Absolutely. There is still places that
we go to that just have no awareness and we're
(11:45):
talking about Australians. My mum and dad are born here
and they don't get the access that all Australians get.
They don't get in their NDIS funding and things like that.
They don't sometimes they don't get enough money to have
that access. They're denied. Then they have to choose. Or
should I go to that christening or should I go
to my doctor's appointment today because I only have enough
(12:07):
money for one interpreter? So these are choices that they
have to make all the time. So. And that's unfair.
Do we have that problem as Australians? Hearing Australians? Well,
that's a big no.
S2 (12:22):
You're listening to a special edition of In Plain Sight
on Vision Australia Radio.
S1 (12:27):
With me, Simon Chong.
S2 (12:28):
And with me, Andrew Williams, the new producer and co-host
of the program. And we're highlighting segments chosen by Simon
from several programs. And in April this year, you spoke
to Lisa Burnett. Simon, tell me a little bit about
Lisa's background.
S1 (12:43):
Lisa and I worked on a committee together for the
organisation known as people with Disabilities Australia, PWD. Lisa struck
me at the time as a very strong leader, a
very quietly spoken leader, a leader that leads by example
rather than loudness or words. She led by her own actions.
(13:08):
Lisa is a double leg amputee and she talks about
what drives her to be so community minded and to
be so active within the community. And at the time
of speaking to her and recording that particular episode, we
were focusing on volunteering, and Lisa does a lot of
volunteering in her community and within the disability sector. So
(13:32):
it all fitted well together.
S5 (13:37):
When I was 24, I was doing my big overseas
experience in the UK. I was working at a hospital
in London in a dialysis unit and I caught meningococcal disease. Yeah,
so I was a baby nurse at that stage in
the sense that I'd sort of been nursing for 5
or 6 years, but I had to take a complete
(13:59):
career change, um, because I lost my legs as a
result of the meningococcal disease and spent about 18 months
off work. So that was when my volunteer career started,
in fact.
S1 (14:11):
Initially you said you had 18 months off work, which
to me sounds like a very short time, and I
find all that fascinating and quite amazing. Can you firstly
tell us about meningococcal, what it is and how that
looked for you at that time?
S5 (14:28):
So that was back in 2000. Meningococcal is a bacteria
that lives in the back of the throat of about 10%
of the population, and it moves around. So like all bacteria,
most people they think are probably already immune to becoming
ill with the disease in the sense that your immune
system would fight it off. In some cases, the bacteria
(14:49):
can get across what they call the blood brain barrier
and get into the meninges and cause meningitis, and then
it can also cause septicaemia. So I had the septicaemia,
which is sort of the worst case scenario. You're a
life expectancy or prognosis is quite low because of how
quickly the disease moves. So if you get caught early
(15:13):
Then you come out with relatively few side effects. I
was taken to hospital because my partner found me semi-conscious
after a night and he called the ambulance. So I
then spent about two weeks in ICU, but by then
the blood leaking into the tissues that occurs from the
(15:33):
bacteria meningococcal it attacks all the blood vessels had done
so much damage that I ended up losing both my
legs below the knee. And I've had quite a lot
of split skin grafts on my arms.
S1 (15:44):
Wow.
S5 (15:45):
So it was quite a long recovery. I spent four
months in hospital in London, and then I was ready
for thinking about prosthetic legs, at which time they shipped
me off back to Australia to start my really what
they call rehabilitation.
S1 (15:58):
Gosh, that's a very traumatic end to your big adventure in,
in in London there.
S5 (16:04):
And it totally changed what I thought I was going
to do with my life.
S1 (16:06):
You've always been actively involved in trying to inform the
public about Meningococcal disability. What it's like to be an
amputee and all these different areas of of your life.
Tell us about how that got started and why you're
so keen on doing that.
S5 (16:25):
My life in volunteering started when I was sitting around
at home doing nothing, because I was recovering and going
to the gym every day and rehabilitating. And I reached
out to a group called Amputees in Action, which was
auspiced by Megan Shand, who we all know. She, uh,
invited me onto the committee, and then I just became
(16:47):
quite involved. I think where I can see a gap,
I will fill it. And I suspect that's how I've
ended up doing so many weird and wonderful things. If
there's a gap and I. I think that I can contribute,
then I somehow end up helping out.
S1 (17:01):
You also wrote a book.
S5 (17:02):
Yeah, I published my book in 2008, but I actually
started writing it ten years before. I was really glad
that I waited so long to publish it. The first
sort of versions were probably more angry and frustrated. But
then over time, you know, it became a much more
full version. And I guess the reason I started writing
it was because so many people said to me, you
(17:24):
should write a book about your recovery. And in the end,
I thought, well, it is quite therapeutic to write it
all down. And now there's something out in the world
that other people who are experiencing meningococcal disease can go to.
I know when I was in hospital, it was so
valuable to have other people's stories, to sort of follow
their their progress and their journeys.
S1 (17:45):
What's the book called? Lisa.
S5 (17:46):
It's called Learning to Walk.
S1 (17:48):
And where can we find that book?
S5 (17:50):
Um, it's still available on Lulu.com. And they've converted it
into Lulu. Lulu. It's called. Yep. And they've converted it
to an ebook as well. Now.
S2 (18:02):
Now, in early June last year, Simon, you spoke to
Ben Rowe from Blind Sports. So tell me a little
bit about Ben and his role with Blind Sports Wha.
S1 (18:14):
Well, yes. One of the reasons I chose Ben to
add into this episode is that, well, firstly, Ben is
one of the most talked about people within this show
because a number of our guests have had direct links
to Ben, be it Caitlyn with her Gold Ball experience,
bit Gia with her music links, or with Julie, who
(18:37):
is a colleague of Ben's at Blind Sports Western Australia.
S2 (18:41):
Now, you mentioned goalball there, Simon. So tell me what
goalball is.
S1 (18:45):
Well, goalball is a specially designed game. It's a game
that is played in the Paralympics specially designed for blind people.
It is a game where everyone is blindfolded. You have
three people on each side at a particular time, and
it's played on a basketball sized court. And on each
(19:07):
end of that court are big goals, like a soccer goal.
And if each player acts a bit like a soccer goalkeeper,
and they're rolling a big, heavy ball with bells inside,
and they have to try to stop this ball going
through to their own goal. When we first interviewed Caitlyn
Hannon Williams, we called the episode balls with bells because
(19:31):
that's what it is and it's a fascinating game. I
highly recommend people look up this game on the internet.
It's widely found on the internet and Ben represented Australia
several times. Unfortunately, their team didn't quite make it into
the Paralympics, but Ben was an instigator into helping establish
(19:54):
Blind Sports Western Australia to the greatness to where it
is now, and I really enjoyed meeting Ben and hearing
a little about his personal story and how he got
to be in the position he is now. And I
found it a really encouraging story. And Ben is also
a musician and I believe he has a gig coming
(20:16):
up soon. Andrew.
S2 (20:17):
Yes, he does actually. Um, so it's Benny Ro and
the troika band and the gigs on Sunday the 27th
of July at 2:00 at Clancy's Fish Pub here in
in Perth and Fremantle. So that'll be an interesting gig
to look out for.
S1 (20:33):
I highly recommend looking out for Benny Ro music. You
can find him on all the streaming platforms and you
can buy his music on Bandcamp and Benny Ro. He
has a connection with Fremantle, and he also helped establish
in the local City Council of Cockburn, a accessible and
inclusive music program for when he was working there at
(20:56):
the City of Cockburn. Just also illustrates the great community
spirit of people like Ben have, and that's why I've
chosen Ben to be part of this program today.
S2 (21:07):
Fantastic. Let's have a listen.
S6 (21:11):
I was diagnosed with retinitis pigmentosa when I was four.
The story was when we were at the beach one evening,
the sun had gone down and we were walking back
to the car and I couldn't find the steps to
get up from the the off the beach. And mum
thought this was quite weird, you know, so she took
(21:31):
me to the doctors to do the the old test
and came back with a diagnosis of retinitis pigmentosa, which
was very foreign for mum and dad and even, you know,
the doctors at the time. So that was back in
God early 80s.
S1 (21:48):
Getting back to your eye condition, what's generally known as
RP or retinitis pigmentosa. My little understanding of that eye
condition that it gets worse over time.
S6 (21:58):
Yeah. So I guess, um, the main indicator when you're
first diagnosed with, with the condition is night blindness. So, um,
I couldn't see anything at night.
S1 (22:08):
So what age would that have been?
S6 (22:09):
I was from birth, actually, so. But they picked it up.
I was four years old. Um, so, you know, I
couldn't see. We could. We used to live on a
farm out in a in a town called Bolgart, which
is out past Toodyay. And we used to go, um,
you know, out roo shooting and do all sort of
farming stuff, you know. But I couldn't see anything. The
only it was lucky we had a big spotlight on
(22:31):
the ute and we could, you know, follow the the
kangaroos and the foxes and all that sort of stuff.
But I could only see very little bit when the,
when the spotlight was on it. But other than that,
I couldn't see at night. Um, but you know, during
the day, I could still, still ride a bike and
play cricket and play sport, basketball, all those sorts of things.
(22:52):
Right up until the age of, I reckon about, uh, 23, 24,
I stopped playing basketball.
S1 (22:58):
If it's okay, I'd be interested to know what it's
like personally to be going through something like a progressive
eye disease that gets worse. And I've met people, many
people over my journey where they were told from an
early age the chance that you might go blind. Can
you tell us a little bit about what's that like?
S6 (23:22):
I guess during my high school time was when I
really kind of started to understand the mountain in front
of us. You know what I mean? That kind of
like the journey ahead. Like you start to think, oh, well,
I'm not going to get a driver's license. So you
start to sort of plot and plan after that. Um,
it does force you to make certain decisions. Like I was, um,
(23:44):
I bought a house when I was 19. I thought,
I'm not going to be able to work at 35. Like,
these are the kind of things that you think about
in the current environment that we lived in back then,
like working as a blind person was kind of like, well,
it still is. It's pretty hard. Like it's hard to, um,
assume you're just going to get a job and life's
(24:05):
going to be cruisy like everyone else. Like you think,
you know, while I've got sight, I can work. I'll
pay off a house, and then I don't have to
worry about that. I've always got a home. So at
at 35, 37, I paid off my house. I actually
did all that sort of stuff. I worked in the
disability support sort of field. I went to uni. I did, um,
(24:26):
a bachelor's in counselling. Like, I've always thought, working with people,
you know, you don't need sight. I was always thinking like,
what can I do that you know, I can always
fall back on that site. Doesn't really matter. So all
these sort of decisions that I make, um, were on
the basis that I'm going to go blind, you know? Yeah. Um,
and then when it comes to like, I think this
(24:48):
is like a good topic, um, like relationships, I know,
you know, probably do we want to get into relationships
and stuff like that, but it really impacts on your
ability to, you know, advance in that area. Um, you know,
ask people out, all these things, you start to think, oh,
you know, um, a bit self-conscious about this sort of stuff.
S1 (25:10):
It's hard to ask someone out if you can't find
where they are.
S6 (25:13):
Yeah, those sorts of things. But, um, and like, I'm,
I'm a bit ashamed of it a little bit now,
but like in the past, I used to really drink
heavily when we'd go out because it would hide the
vision impairment because everyone thought I was drunk, you know?
So there's all these sorts of things that kind of
(25:34):
guide your decision making as a young person that, um,
just trying to kind of go with the Joneses and
do what you do. But as I got older, you
start to like, you know, really find your place, like where,
where things belong. And you don't have to do this.
You don't have to do that. And you start to
kind of filter through all the or the mud, really.
(25:56):
I got asked to come and try, um, a game
called goalball. Um, over at Vic Park. They were running
a pilot program with, um, the Paralympics Australia Committee or APC.
They were called at the time. So we run this
and I had a go of it and I was like, oh,
you know, it's fun. And, um, didn't didn't go back
(26:16):
for a couple of weeks. And then a mate of mine, ton,
he rang me up. Are you coming back? I need
someone to play against because, you know, you're the only
one that was any good at it. You know, straight off.
And everyone else was kind of on their at their
later years, you know. So I went back and then
all of a sudden we're we've got a team together
in 2010 to go travel to Queensland representing WA for
(26:39):
the first time in a long time. And I won
the scoring title for the tournament, which was quite interesting
for the first tournament and then they welcomed me into
the Australian team and yeah, got to do that for
about ten years playing gold ball for Australia. But it
was a it was a great time and part of
(27:00):
that journey was setting up Gold Ball Western Australia in
2000 and in 2000.
S1 (27:06):
So you were part of setting that up?
S6 (27:08):
Yeah. So I was the inaugural president for, I don't know,
the first five, six years or so of that.
S2 (27:18):
Well, that was great to hear from Ben Rowe from
Blind Sports WA. And just another reminder for the gig
that's coming up here in Perth, Benny Rowe and the
troika band on Sunday the 27th of July at 2 p.m.
at Clancy's Fish Pub in Fremantle. And you can book
your tickets through austexx. Well, that's all we have time
for for this week on In Plain Sight. We hope
(27:40):
you've enjoyed this special edition with highlights of a handful
or so of programs chosen by Simon. We hope you
can join us with me, Andrew Williams.
S1 (27:49):
And me, Simon Chong.
S2 (27:50):
At the same time. Next week on Vision Australia Radio,
VA radio digital and online at VA Radio.com. You can
also listen on demand by searching for In Plain Sight
wherever you get your podcasts. Or you can ask your
smart device to play in Plain sight by Vision Australia Radio.
Thanks for listening.
S7 (28:11):
Thank you.
Hello, I'm Simon Cheung and welcome to In Plain Sight,
a program where we highlight people who are making a
difference and impact within the disability sector and their community.
We shine a light on those who otherwise would be
hidden in plain sight. And it's a pleasure to bring
you these programmes on a weekly basis here on Vision
Australia Radio. This week we've got a special episode just
(00:36):
to mark a few different things happening. So we're in
a transition phase at the moment. You've noticed that we've
had our work experience, kid Andrew, on the program for
the last few weeks, and that's because my friend and
colleague Abby was away for a while, and she's going
to be putting some more time into her professional journalism career.
(00:57):
So unfortunately, she will be transitioning away from the program.
Abby will be with us in a few weeks time
to present with me a couple of shows, and in
the meantime, I'm going to try and get this young
fella here, Andrew, up to speed with being my producer
and co-host. And I welcome Andrew to the studio today. Hello, Andrew.
S2 (01:15):
Hello, Simon. How are you going?
S1 (01:17):
Very well. And it's good to be here in the
studio with you again today. And I'm looking forward to
this very special program that we're presenting.
S2 (01:25):
Yeah, it's actually great to be joining the program, Simon.
And for me, what we're doing today on the program
with highlighted segments from selected programs from this year and
also from late last year. It's a great opportunity for
me to chat with you about these highlights, as well
as just talk about the program in general.
S1 (01:43):
Yes, I've pulled out highlights from about four shows, and
I've chosen these people because they struck a chord with
me because they really do personify the leadership and advocacy
that is the main feature of our program. And Andrew,
what was the first person that we are going to
choose today?
S2 (02:02):
Well, first up, we have a segment from a program
from December last year that focused on the the International
Day of People with disability, which is on the 3rd
of December each year. Tell me about your guests that
you had on the program, Nihal.
S1 (02:14):
Nihal is someone I know reasonably well. She's a very
prominent figure within the blindness community here in Western Australia
and Australia. And her along with her sister Zeliha. They
are both totally blind and they were born in Turkey.
And why I've chosen Nihal and why I chose her
(02:35):
for that particular show, is that it was a great
demonstration of what Nihal sees as bringing people together and
creating community, and how to build up some resilience to
therefore become a leader yourself. And it was a really
great insight into forming and developing a sustaining leadership. And
(02:58):
that was part of the theme of the International Day
of People with disabilities for that year. What do you
think are the important methods of encouraging leadership amongst people
with disabilities.
S3 (03:16):
I just say, if you see an issue that are
disturbing you, that can be fixed with advocacy and activism,
do something, say something and be transparent, be honest and, um,
you know, just get out there and try and talk
(03:38):
to other people who might be like minded and work together.
You can't be a leader on your own. Impossible. You
need other people who agree with you and who can
take the baton and go forward with you.
S1 (03:52):
Someone who might be listening to this and might have
a disability themselves, or might have a friend or a
family member who has a disability and thinks, gee, how
does one become a leader? I'm struggling with my disability.
I don't think I can. What would you say to
someone like that, Niall?
S3 (04:10):
I would just say be resilient, keep pushing forward and
know your issues. If you know your issues and get
together with people with similar disabilities.
S1 (04:25):
Yes.
S3 (04:25):
And you learn a lot more from people with similar
disabilities than you would from your family who don't have
disabilities or from your other friends, close friends who don't
have disabilities. It's so important to have other people with
disabilities in your life.
S1 (04:45):
What would you say? 1 or 2 things that are
a major impact that we need to still work upon?
S3 (04:50):
I think one of the issues for people with disability
is employment. Definitely that we still need to work on.
Housing is another issue.
S1 (05:01):
We acknowledge that everyone in Australia is having difficulty with housing,
but just imagine having a disability on top of everything
else as well. That Impacts us even more so, especially
if you don't have a job.
S3 (05:18):
If you're a person with no disability. You could rent
a house, and if you're able to drive, you could
rent a house up in the hills somewhere where you
don't have, um, lots of public transport. If you're a
person who's blind, you need to be close to public transport.
You need to be close to the amenities. You know, um,
if you're a person who's a wheelchair user, you can't
(05:41):
just rent a place on the second floor, third floor
of an apartment if there is no lift. So you
are limited in your choice of housing.
S2 (05:53):
In February of this year, you spoke to Linda de
Rosario Simon. So tell me a bit more about that
program and your guests.
S1 (06:01):
Well, firstly, I was very excited to meet Linda because
she came very highly recommended from two very reliable sources.
And when I met Linda, I kept on thinking, I
know that surname de Rosario. And when I sat down
to talk to Linda, she said, yes. The reason you
know that surname is because my daughter is Madison de Rosario.
(06:25):
And for those who don't know, Madison is one of
Australia's leading Paralympic athletes, and she was the flag bearer
at the Paris Paralympic Games, which were held last year
in 2024. And she is a superstar. Highly recommend if
you don't know who Madison De Rosario is, check her out.
(06:46):
And the reason we were speaking to Linda was she
is one of the most interesting people I've ever met
because I don't know much about the deaf community, and
she gave us some fabulous personal and professional insights into Auslan,
which is the Australian Sign Language that people who are
(07:09):
deaf and hard of hearing use here in Australia. She
gave some personal insights because her parents are deaf and
she runs her own business providing professional Auslan interpretation for
the community. And I hope you enjoy that little segment
we've got to share with you now. So there is
(07:31):
different sign languages to use that terminology for different countries
around the world. Yes.
S4 (07:37):
Correct. Yes.
S1 (07:38):
And so how do a deaf person from Australia communicate
with a deaf person in Britain or France?
S4 (07:45):
Good question. So if a deaf person from Australia went
to England or Britain, um, it's very, very similar because
we had our language derived from them. So they have
a couple of variances. But if they were to go
to France are completely different. But the beauty about sign
language is it's visual. So a lot of it is gestural.
(08:07):
So body language. So a deaf person would be able
to communicate with a person from another country that uses
a different sign language better than a hearing person would
be able to speak to another person from a different
language because it's all visual.
S1 (08:19):
Linda, how did you get into becoming an Auslan interpreter?
S4 (08:23):
I had a life before my children. I had a
very good job, a 9 to 5, and when I
had children, I didn't want a 9 to 5. I
wanted to be at home. Mum and I had three
beautiful babies. But after the third, it was like, I
really need to use my brain a bit more. So
I didn't know which career I wanted to go into. Um,
(08:44):
my sister was already in Auslan interpreter and she was
living in New Zealand and she said, why don't you
just do do that. You have the language. Just then
you can pick and choose your jobs. So I did,
I studied for the year and then went straight into
interpreting in 96 and have been doing it ever since.
S1 (09:00):
Okay, now you just hinted there you had the language.
Tell us how you were introduced to the Auslan in
the first place.
S4 (09:06):
So my mother was profoundly deaf at birth. So my
first language is Auslan and my mother had seven children
and we all used sign language fluently. We learnt English
sort of through our aunties and more so when we
went to school.
S1 (09:22):
Can you give us an example of how Auslan is
a different language to to English?
S4 (09:29):
Sure.
S1 (09:30):
In spoken English.
S4 (09:31):
English, as we know, is linear. It's one word at
a time. You can only say one word at a
time and it's structured differently. So you have. And I
never got this right in school because it was my
second language. You have like a subject, a topic, time,
that sort of stuff. There's a there's a structure in
English in Auslan. It's time topic comment. So we will
(09:53):
say the time first. If there is time in that
sentence and then the topic and the comment. But sometimes
the topic can comment can get interchanged as well. So
if I said to you I'm going to the beach
tomorrow in sign language, I would say tomorrow go beach.
I wouldn't say I am going to the beach tomorrow,
it'll just be tomorrow. Because now you know when I'm talking.
(10:16):
It's about tomorrow. Where am I going? Beach. And I'm going.
So the structure is very, very different. Just like in
other spoken languages. The structure of how you say things
is different to English. Auslan is the same, but have
to remember that in Auslan it's a visual language. So
you have to give the visual.
S1 (10:36):
So how would you define the deaf community. And can
you tell us about the capital D in deaf.
S4 (10:42):
Sure. So yes, there are different pockets in the deaf community.
So the capital D that you refer to is if
somebody is born deaf, learn sign language as their language,
and then absorb themselves into the deaf community, they are
proud deaf people and they wear that capital D quite proudly.
(11:03):
The other deaf is a lowercase deaf. So if people
go hard of hearing or they have a hearing impairment,
but don't use the language and don't immerse in the community,
that's that category lowercase def. Um, they are more in
the hearing world than the deaf world.
S1 (11:18):
Do you see that things are improving in integration and
awareness of people who are deaf?
S4 (11:25):
Look, if I were to go back and say, okay,
through my through my life, yes, there's been improvement. Has
it been fast? Absolutely not. How have we got a
long way to go? Absolutely. There is still places that
we go to that just have no awareness and we're
(11:45):
talking about Australians. My mum and dad are born here
and they don't get the access that all Australians get.
They don't get in their NDIS funding and things like that.
They don't sometimes they don't get enough money to have
that access. They're denied. Then they have to choose. Or
should I go to that christening or should I go
to my doctor's appointment today because I only have enough
(12:07):
money for one interpreter? So these are choices that they
have to make all the time. So. And that's unfair.
Do we have that problem as Australians? Hearing Australians? Well,
that's a big no.
S2 (12:22):
You're listening to a special edition of In Plain Sight
on Vision Australia Radio.
S1 (12:27):
With me, Simon Chong.
S2 (12:28):
And with me, Andrew Williams, the new producer and co-host
of the program. And we're highlighting segments chosen by Simon
from several programs. And in April this year, you spoke
to Lisa Burnett. Simon, tell me a little bit about
Lisa's background.
S1 (12:43):
Lisa and I worked on a committee together for the
organisation known as people with Disabilities Australia, PWD. Lisa struck
me at the time as a very strong leader, a
very quietly spoken leader, a leader that leads by example
rather than loudness or words. She led by her own actions.
(13:08):
Lisa is a double leg amputee and she talks about
what drives her to be so community minded and to
be so active within the community. And at the time
of speaking to her and recording that particular episode, we
were focusing on volunteering, and Lisa does a lot of
volunteering in her community and within the disability sector. So
(13:32):
it all fitted well together.
S5 (13:37):
When I was 24, I was doing my big overseas
experience in the UK. I was working at a hospital
in London in a dialysis unit and I caught meningococcal disease. Yeah,
so I was a baby nurse at that stage in
the sense that I'd sort of been nursing for 5
or 6 years, but I had to take a complete
(13:59):
career change, um, because I lost my legs as a
result of the meningococcal disease and spent about 18 months
off work. So that was when my volunteer career started,
in fact.
S1 (14:11):
Initially you said you had 18 months off work, which
to me sounds like a very short time, and I
find all that fascinating and quite amazing. Can you firstly
tell us about meningococcal, what it is and how that
looked for you at that time?
S5 (14:28):
So that was back in 2000. Meningococcal is a bacteria
that lives in the back of the throat of about 10%
of the population, and it moves around. So like all bacteria,
most people they think are probably already immune to becoming
ill with the disease in the sense that your immune
system would fight it off. In some cases, the bacteria
(14:49):
can get across what they call the blood brain barrier
and get into the meninges and cause meningitis, and then
it can also cause septicaemia. So I had the septicaemia,
which is sort of the worst case scenario. You're a
life expectancy or prognosis is quite low because of how
quickly the disease moves. So if you get caught early
(15:13):
Then you come out with relatively few side effects. I
was taken to hospital because my partner found me semi-conscious
after a night and he called the ambulance. So I
then spent about two weeks in ICU, but by then
the blood leaking into the tissues that occurs from the
(15:33):
bacteria meningococcal it attacks all the blood vessels had done
so much damage that I ended up losing both my
legs below the knee. And I've had quite a lot
of split skin grafts on my arms.
S1 (15:44):
Wow.
S5 (15:45):
So it was quite a long recovery. I spent four
months in hospital in London, and then I was ready
for thinking about prosthetic legs, at which time they shipped
me off back to Australia to start my really what
they call rehabilitation.
S1 (15:58):
Gosh, that's a very traumatic end to your big adventure in,
in in London there.
S5 (16:04):
And it totally changed what I thought I was going
to do with my life.
S1 (16:06):
You've always been actively involved in trying to inform the
public about Meningococcal disability. What it's like to be an
amputee and all these different areas of of your life.
Tell us about how that got started and why you're
so keen on doing that.
S5 (16:25):
My life in volunteering started when I was sitting around
at home doing nothing, because I was recovering and going
to the gym every day and rehabilitating. And I reached
out to a group called Amputees in Action, which was
auspiced by Megan Shand, who we all know. She, uh,
invited me onto the committee, and then I just became
(16:47):
quite involved. I think where I can see a gap,
I will fill it. And I suspect that's how I've
ended up doing so many weird and wonderful things. If
there's a gap and I. I think that I can contribute,
then I somehow end up helping out.
S1 (17:01):
You also wrote a book.
S5 (17:02):
Yeah, I published my book in 2008, but I actually
started writing it ten years before. I was really glad
that I waited so long to publish it. The first
sort of versions were probably more angry and frustrated. But
then over time, you know, it became a much more
full version. And I guess the reason I started writing
it was because so many people said to me, you
(17:24):
should write a book about your recovery. And in the end,
I thought, well, it is quite therapeutic to write it
all down. And now there's something out in the world
that other people who are experiencing meningococcal disease can go to.
I know when I was in hospital, it was so
valuable to have other people's stories, to sort of follow
their their progress and their journeys.
S1 (17:45):
What's the book called? Lisa.
S5 (17:46):
It's called Learning to Walk.
S1 (17:48):
And where can we find that book?
S5 (17:50):
Um, it's still available on Lulu.com. And they've converted it
into Lulu. Lulu. It's called. Yep. And they've converted it
to an ebook as well. Now.
S2 (18:02):
Now, in early June last year, Simon, you spoke to
Ben Rowe from Blind Sports. So tell me a little
bit about Ben and his role with Blind Sports Wha.
S1 (18:14):
Well, yes. One of the reasons I chose Ben to
add into this episode is that, well, firstly, Ben is
one of the most talked about people within this show
because a number of our guests have had direct links
to Ben, be it Caitlyn with her Gold Ball experience,
bit Gia with her music links, or with Julie, who
(18:37):
is a colleague of Ben's at Blind Sports Western Australia.
S2 (18:41):
Now, you mentioned goalball there, Simon. So tell me what
goalball is.
S1 (18:45):
Well, goalball is a specially designed game. It's a game
that is played in the Paralympics specially designed for blind people.
It is a game where everyone is blindfolded. You have
three people on each side at a particular time, and
it's played on a basketball sized court. And on each
(19:07):
end of that court are big goals, like a soccer goal.
And if each player acts a bit like a soccer goalkeeper,
and they're rolling a big, heavy ball with bells inside,
and they have to try to stop this ball going
through to their own goal. When we first interviewed Caitlyn
Hannon Williams, we called the episode balls with bells because
(19:31):
that's what it is and it's a fascinating game. I
highly recommend people look up this game on the internet.
It's widely found on the internet and Ben represented Australia
several times. Unfortunately, their team didn't quite make it into
the Paralympics, but Ben was an instigator into helping establish
(19:54):
Blind Sports Western Australia to the greatness to where it
is now, and I really enjoyed meeting Ben and hearing
a little about his personal story and how he got
to be in the position he is now. And I
found it a really encouraging story. And Ben is also
a musician and I believe he has a gig coming
(20:16):
up soon. Andrew.
S2 (20:17):
Yes, he does actually. Um, so it's Benny Ro and
the troika band and the gigs on Sunday the 27th
of July at 2:00 at Clancy's Fish Pub here in
in Perth and Fremantle. So that'll be an interesting gig
to look out for.
S1 (20:33):
I highly recommend looking out for Benny Ro music. You
can find him on all the streaming platforms and you
can buy his music on Bandcamp and Benny Ro. He
has a connection with Fremantle, and he also helped establish
in the local City Council of Cockburn, a accessible and
inclusive music program for when he was working there at
(20:56):
the City of Cockburn. Just also illustrates the great community
spirit of people like Ben have, and that's why I've
chosen Ben to be part of this program today.
S2 (21:07):
Fantastic. Let's have a listen.
S6 (21:11):
I was diagnosed with retinitis pigmentosa when I was four.
The story was when we were at the beach one evening,
the sun had gone down and we were walking back
to the car and I couldn't find the steps to
get up from the the off the beach. And mum
thought this was quite weird, you know, so she took
(21:31):
me to the doctors to do the the old test
and came back with a diagnosis of retinitis pigmentosa, which
was very foreign for mum and dad and even, you know,
the doctors at the time. So that was back in
God early 80s.
S1 (21:48):
Getting back to your eye condition, what's generally known as
RP or retinitis pigmentosa. My little understanding of that eye
condition that it gets worse over time.
S6 (21:58):
Yeah. So I guess, um, the main indicator when you're
first diagnosed with, with the condition is night blindness. So, um,
I couldn't see anything at night.
S1 (22:08):
So what age would that have been?
S6 (22:09):
I was from birth, actually, so. But they picked it up.
I was four years old. Um, so, you know, I
couldn't see. We could. We used to live on a
farm out in a in a town called Bolgart, which
is out past Toodyay. And we used to go, um,
you know, out roo shooting and do all sort of
farming stuff, you know. But I couldn't see anything. The
only it was lucky we had a big spotlight on
(22:31):
the ute and we could, you know, follow the the
kangaroos and the foxes and all that sort of stuff.
But I could only see very little bit when the,
when the spotlight was on it. But other than that,
I couldn't see at night. Um, but you know, during
the day, I could still, still ride a bike and
play cricket and play sport, basketball, all those sorts of things.
(22:52):
Right up until the age of, I reckon about, uh, 23, 24,
I stopped playing basketball.
S1 (22:58):
If it's okay, I'd be interested to know what it's
like personally to be going through something like a progressive
eye disease that gets worse. And I've met people, many
people over my journey where they were told from an
early age the chance that you might go blind. Can
you tell us a little bit about what's that like?
S6 (23:22):
I guess during my high school time was when I
really kind of started to understand the mountain in front
of us. You know what I mean? That kind of
like the journey ahead. Like you start to think, oh, well,
I'm not going to get a driver's license. So you
start to sort of plot and plan after that. Um,
it does force you to make certain decisions. Like I was, um,
(23:44):
I bought a house when I was 19. I thought,
I'm not going to be able to work at 35. Like,
these are the kind of things that you think about
in the current environment that we lived in back then,
like working as a blind person was kind of like, well,
it still is. It's pretty hard. Like it's hard to, um,
assume you're just going to get a job and life's
(24:05):
going to be cruisy like everyone else. Like you think,
you know, while I've got sight, I can work. I'll
pay off a house, and then I don't have to
worry about that. I've always got a home. So at
at 35, 37, I paid off my house. I actually
did all that sort of stuff. I worked in the
disability support sort of field. I went to uni. I did, um,
(24:26):
a bachelor's in counselling. Like, I've always thought, working with people,
you know, you don't need sight. I was always thinking like,
what can I do that you know, I can always
fall back on that site. Doesn't really matter. So all
these sort of decisions that I make, um, were on
the basis that I'm going to go blind, you know? Yeah. Um,
and then when it comes to like, I think this
(24:48):
is like a good topic, um, like relationships, I know,
you know, probably do we want to get into relationships
and stuff like that, but it really impacts on your
ability to, you know, advance in that area. Um, you know,
ask people out, all these things, you start to think, oh,
you know, um, a bit self-conscious about this sort of stuff.
S1 (25:10):
It's hard to ask someone out if you can't find
where they are.
S6 (25:13):
Yeah, those sorts of things. But, um, and like, I'm,
I'm a bit ashamed of it a little bit now,
but like in the past, I used to really drink
heavily when we'd go out because it would hide the
vision impairment because everyone thought I was drunk, you know?
So there's all these sorts of things that kind of
(25:34):
guide your decision making as a young person that, um,
just trying to kind of go with the Joneses and
do what you do. But as I got older, you
start to like, you know, really find your place, like where,
where things belong. And you don't have to do this.
You don't have to do that. And you start to
kind of filter through all the or the mud, really.
(25:56):
I got asked to come and try, um, a game
called goalball. Um, over at Vic Park. They were running
a pilot program with, um, the Paralympics Australia Committee or APC.
They were called at the time. So we run this
and I had a go of it and I was like, oh,
you know, it's fun. And, um, didn't didn't go back
(26:16):
for a couple of weeks. And then a mate of mine, ton,
he rang me up. Are you coming back? I need
someone to play against because, you know, you're the only
one that was any good at it. You know, straight off.
And everyone else was kind of on their at their
later years, you know. So I went back and then
all of a sudden we're we've got a team together
in 2010 to go travel to Queensland representing WA for
(26:39):
the first time in a long time. And I won
the scoring title for the tournament, which was quite interesting
for the first tournament and then they welcomed me into
the Australian team and yeah, got to do that for
about ten years playing gold ball for Australia. But it
was a it was a great time and part of
(27:00):
that journey was setting up Gold Ball Western Australia in
2000 and in 2000.
S1 (27:06):
So you were part of setting that up?
S6 (27:08):
Yeah. So I was the inaugural president for, I don't know,
the first five, six years or so of that.
S2 (27:18):
Well, that was great to hear from Ben Rowe from
Blind Sports WA. And just another reminder for the gig
that's coming up here in Perth, Benny Rowe and the
troika band on Sunday the 27th of July at 2 p.m.
at Clancy's Fish Pub in Fremantle. And you can book
your tickets through austexx. Well, that's all we have time
for for this week on In Plain Sight. We hope
(27:40):
you've enjoyed this special edition with highlights of a handful
or so of programs chosen by Simon. We hope you
can join us with me, Andrew Williams.
S1 (27:49):
And me, Simon Chong.
S2 (27:50):
At the same time. Next week on Vision Australia Radio,
VA radio digital and online at VA Radio.com. You can
also listen on demand by searching for In Plain Sight
wherever you get your podcasts. Or you can ask your
smart device to play in Plain sight by Vision Australia Radio.
Thanks for listening.
S7 (28:11):
Thank you.
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