October 21, 2025 • 28 mins
This week, join Simon and Andrew as they chat to the founding members of the band The Grand Delusions Art Karnasuta (Vocals, guitar) and Emmanuel (Manny) Lee (Keyboard) about their mission to inspire community involvement through music.
Art and Manny discuss how they manage their respective vision impairments while encouraging others to join in community activities. Reinforcing the importance of sharing personal anecdotes and lessons to assist those with similar situations or struggles. It is truly inspiring to see how music can create a sense of belonging, joy and confidence through shared experience and vulnerability.
For those based in WA who are blind or low vision, here are some great community groups to join:
Blind Golf WA
Can be found through Facebook or the Blind Golf Australia website which hosts games around the country to build skills, share a passion for golf and create friendships.
WA Tandem Cycling
Can be found here to participate in regular rides for fun or participate in community events.
Support Vision Australia Radio: https://www.visionaustralia.org/donate
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:17):
Hello and welcome to In Plain Sight, a program where
we highlight people who are making a positive impact in
the community and disability sector.
S2 (00:25):
Shining a light on those who would be otherwise hidden
in plain sight.
S1 (00:29):
And it's a pleasure to bring you these stories on
a weekly basis with you here on Vision Australia Radio.
S2 (00:35):
Hi, how are you going, Andrew?
S1 (00:36):
I'm very well this week. Simon. And you?
S2 (00:39):
I'm great. I really enjoyed our topic of discussion today, and, um,
it was really great to meet the two guests that
you will be listening to shortly. And also as this
program goes to air, it is Invisible Disabilities Week that
runs from the 19th to 25th of October. And as
(01:00):
someone with an invisible disability, I just wanted to make
mention of that and also make mention of the growing
movement taking place within this field of invisible disabilities, which
is represented by the sunflower. And if anyone knows me,
that is one of the reasons why I have sunflower
in my Facebook profile picture. Just one of the reasons.
(01:23):
The other reason is I like sunflowers. They look bright
and happy and wonderful. Invisible disabilities can be anything that
is not visible to an observer, that a person has
a disability, an impairment, or a severe illness that limits
them in some way. And we just wanted to make
acknowledgement of that. Andrew, do you have any information there
(01:45):
about Invisible Disability Week?
S1 (01:48):
Well, I guess some of the, the examples of of
invisible disabilities are things like autism and chronic fatigue or
anxiety or um, or such things, and also physical disabilities
as well. So for example, you might have a bad back.
Something as simple as that, as a permanent thing. So
you might have, um, trouble lifting a chair even to
(02:11):
something as simple as that. So the choir in which
I sing, the Perth Pride Choir, we have just adopted
the sunflower thing to which you've just referred Simon, and
we wear it on our name tags each week just
to show that, um, you know, that that particular person
might have trouble putting out the chairs at the start,
for example. So there's no expectation that that person is
(02:35):
going to be putting out the chairs. And just a
simple little thing like that can actually just make show
that whole thing and exactly make a difference. That's the
most important thing.
S2 (02:45):
And it's also, um, acknowledgement and solidarity and.
S1 (02:48):
Absolutely.
S2 (02:49):
Camaraderie. And that's one of the themes that gets brought
up in our discussion that you'll be hearing shortly. But
just to reemphasize what Andrew was just saying there, it's
also things like some people may have something like cerebral
palsy that affects their leg and it affects the way
they walk or their gait. And this could be interpreted
(03:09):
in so many different ways. Some people wouldn't recognize it
as a physical disability. They might think the person could
be impaired by alcohol or drugs or other things. That's
why they're walking weird and that type of thing. And
there are other illnesses and disabilities that impact people differently,
that are not visible to the outsider, that get interpreted
(03:33):
in ways that can be demeaning. And if that person
is wearing something like the sunflower on a badge or
a pin or something that indicates that they have an
invisible disability, and to please take note and to be
aware of that. Our guests coming up are Art and Manny,
and they are part of a really fabulous music program.
(03:55):
And the theme around that program is camaraderie and peer support,
and how they use music to incorporate peer support for
those who are going through vision impairment or learning how
to deal with their acquired blindness. And it's been a
pleasure to meet these two fellows, and I hope you
(04:16):
enjoy listening to the interview now. Thanks for joining us
once again on Vision Australia Radio. And today we've got
a lovely show lined up for you. It's all about
music and everyone loves music. And today we've got two
special guests in the studio with us, and they are
from the Visibility Music program and our guests are Emmanuel
(04:38):
Lee and Art Kanishka, and they are part of a
music program happening at Visibility in Victoria Park here in Perth.
And they also partake in a band that's called The
Grand Illusions. And I'll speak to you first. Manny. Emmanuel,
how are you?
S3 (04:53):
Good. Thanks. And thank you for this time.
S2 (04:56):
Well, thanks for joining us. We've been meaning to get
together for some time. Once I heard about this band
that you have got going on, our friend Lok Tang.
He told us about this many, many months ago. And
ever since then, I've been meaning to get you guys
to come in and tell us a little bit about
it before we get into the music program itself. Manny, um,
(05:17):
can you tell us because you are the assistive technology.
S3 (05:22):
Specialist.
S2 (05:23):
Specialist at visibility?
S3 (05:25):
That's right. Yeah.
S2 (05:25):
Can you tell us what assistive technology person does?
S3 (05:29):
Okay. Um, what I do at visibility as the assistive
technology specialist, uh, we conduct it assessment for clients. Um,
that means, uh, we have to find out what their
needs are for assistive technology. For example, if they have
(05:49):
problem with reading, we have to find a specific equipment,
IT equipment that suitable for that person. After assessment, we
also do training. So training can be with a device
can be with a software and also job access assessment.
(06:12):
We do worksite assessment as well and worksite training.
S2 (06:17):
In the broad picture. Who are the clients that you
see their blind and vision impaired and low vision, is
that right?
S3 (06:23):
Yeah, most of them are. They are blind vision impaired
or dyslexia or they have this, um, really strange condition.
The eyesight is normal, but the eyelid can shut, uh,
close any time. But the person is normal sighted. Yeah.
(06:43):
So we deal with, uh, different types of eye condition. Yeah.
S2 (06:48):
And can you just tell us some of the products
that you might be demonstrating in your, in your role there?
S3 (06:54):
Maybe I start with something simple like iPhone and like
Samsung phone. Yeah. So basically we uh, try to teach
client on how to answer call, uh, make calls, reading
text messages, incoming messages, and then, um, doing outgoing messages. Yeah,
something simple like that.
S2 (07:15):
So it's it it ranges from anything from as simple
as using your phone, correct. To more sophisticated computer work. Correct.
And things of that nature.
S3 (07:25):
That's right. Yeah.
S2 (07:26):
That's fantastic. And everyone needs help with that, especially when
you're new to to your vision loss or whatever it
might be. Changing. Changing circumstances. Now getting to the reason
you're here today, Mandy, how did you get involved with
this music program? I believe that you were one of
the instigators in trying to get this thing up and running.
As part of your involvement within the blind community that. Yes,
(07:47):
you're in there.
S3 (07:48):
Yep. That's right. So we started, uh, about 2015. That
time is just maybe the three four of us. We
had two guitarists, one bongo player, and he's still with
us until today. The bongo player.
S2 (08:05):
Okay. What's his name?
S3 (08:07):
Akbar. Akbar. Akbar. Yep. He's, uh. I think the best
bongo player that I've ever come across. A blind person
can play bongo very well. Yeah. And then the two guitarists,
one of them is Liam Haven. He's an an ex-army blind,
and he's playing guitar. And then, uh, basically he started
(08:30):
teaching clients on how to play guitar. And then I
was there to accompany with the keys, with the keyboard.
And then, uh, we just started to form. That little
group started with four people.
S2 (08:44):
Wow.
S3 (08:44):
Yeah. And then grew up the members just, you know,
added as we, uh, go on year after year. Oh,
right now we had about nearly ten, ten, ten members. Yeah.
Including lock.
S2 (08:58):
Now, I'll introduce Art into the conversation. Now, art, can
you introduce yourself, please?
S4 (09:02):
Yes. My name is Art, which is. I actually joined
the band, which is, um, about five years ago. Me
and Luke, we actually started the same time. First we
went there and just listened again and again until we
have the, um, discuss with many that if I can
join the band, because we have we both have the
(09:24):
skill of guitar as well. We've been playing guitar for
quite some time, year after year, but after we have lost,
I have lost my vision. I actually stopped completely. You know,
I just leave my guitar somewhere.
S2 (09:38):
Somewhere so you could play guitar prior to losing your vision.
So I'll get to.
S4 (09:43):
Start over again when I actually joined the band with
the money. So, um, yeah. Since then, you know, we've
been practicing every, every, every week and performs different places.
S2 (09:55):
So can I ask you, what is the nature of
your eye condition art?
S4 (09:58):
Um, the doctor diagnosed as a leber's, which is from
the family side. Genetics.
S2 (10:05):
And how how does that.
S4 (10:07):
Suddenly.
S2 (10:08):
How does that affect you?
S4 (10:09):
I can see about less than 10% both eyes.
S2 (10:13):
And is that the one that affects your optic nerve?
S4 (10:15):
Yes, yes. Optic nerve.
S2 (10:17):
That's I know about that because I have the same one.
So when did that when was that diagnosis made for you?
S4 (10:22):
14 years ago.
S2 (10:23):
14 years ago?
S4 (10:24):
Yep.
S2 (10:25):
So can I ask how old you were then?
S4 (10:27):
I was 40.
S2 (10:28):
Wow. Okay. It's a bit late. It usually comes in
much earlier than that. Yeah, so that must have been
quite a a shock. Traumatic experience.
S4 (10:37):
Yes. And very chocolate.
S2 (10:39):
Can I ask, how has the music helped with getting
more relaxed and familiar being vision impaired now?
S4 (10:46):
Been very relaxed. You know when you can get out
and enjoy the band. We learn the new things every week,
which is learning new songs, learning how to play different styles,
which is, um, this is the one that started introducing
new songs. He actually looked on each person, each of
us with skill. How much skill that each person may have.
(11:08):
Then can you sing this song? Then we learn new
songs every week like this. End of the year we
have like 6 or 7 performance different places and started from,
I think November, early November until December.
S2 (11:24):
And you said you played guitar prior to your eyesight failing. Mhm.
Was it much of an adjustment to learning and picking
up the guitar again when you're with your eyesight as
it is now.
S3 (11:37):
Um.
S4 (11:38):
No, because actually I know the most of the chords,
you know, all the basic chords. So I just really
have to do, just need practice, bring back my memories.
She's been stopped after years and that I have lost
my vision. So just keep practicing. And man, it's been
helping me a lot.
S2 (11:57):
And many your vision impaired as well.
S3 (12:00):
That's right.
S2 (12:00):
Yeah. And have you been vision impaired all your life
or what's the story there?
S3 (12:04):
So I didn't know that I have retinitis pigmentosa started
when I was in high school and in high school I,
I just can't see the board and then went to
check my eyesight to, um, not specialists, just the practitioner. Just, um,
(12:26):
just that day, uh, they prescribed me with the glasses
and I thought, oh, okay, I just need the glasses.
So I live with that for years and years. Up
until one day I was, um, riding a motorbike, had
an accident with a car. It wasn't my fault. It
was the other car that crashed into the motorbike. So
(12:48):
that day, um, my uncle told me to go to
the hospital. And then I didn't realize that my vision just, uh,
going downhill suddenly. Yeah. but I still can see. I
still can go to school. To uni. Um, drive a car.
But I decided to to go to a specialist. Uh,
(13:10):
this is back in Sydney, and a specialist said, oh,
you have this condition. It's advanced AP. I said, what
is it? It's AP, it's affecting your retina. And then, um,
what is retina? And then he said, it's like a
camera in your eye and it's damaged. Yeah. And then
he said, this is, uh, genetic. I said, oh, okay. Um,
(13:32):
so from there, I realised I have this condition, which
I don't know. And then I asked my parents and
they said, no, we don't have anyone in the family
with RP.
S2 (13:43):
So how long ago was that?
S3 (13:44):
That was 1993. 92? Yeah. 93.
S2 (13:50):
And as Art was saying, being part of the band
that you're in, what did you do back then to
lift your spirits and to find the camaraderie that you've
created here.
S3 (13:59):
Okay. Now, um, why we came up with this band.
Because when I was talking to Liam, basically, he had
trauma from the war. And then also the bomb that
blasted his, uh, army truck, and then he got blinded. Yeah.
So many of those people. Uh oh, I can I
(14:22):
can say, like, generally people that lost vision, like we
lost hope or something that we can do, we no
longer can do. So how we can bring back the hope,
the happiness, the joy. So we decided to have this
(14:43):
music group to basically share our joy. And we tell
the people that they still hope, even though you can't see.
But there is something else that we can share to
other people that there is hope beyond this condition, beyond
your either your sickness or if it's cancer, tumor or
(15:07):
blindness or something else, that there is hope. So the
message is hope. All about hope and joy.
S2 (15:14):
Yeah, I'm a big favor of all that. And I
know from my own personal experience the shared learning, the shared, um,
doing of whatever activity it is under these circumstances. In
this case, you're playing music. Yes. But I can also
envisage that in between participants playing music, they're sharing their stories,
(15:38):
for better or for worse. The pros and cons of
being vision impaired. Is that right?
S3 (15:43):
Absolutely, yeah.
S2 (15:44):
Do you want to talk about that at all? Art.
What what the conversations are like with your fellow band
members around the vision problems?
S4 (15:52):
I'm very happy, you know, to be one of the
band member. Um, Firstly, I have to thank the visibility that's,
you know, introducing me not only the music, you know,
they have a lot of activities which is I'm joined
quite a few of them activities. But the music and
the um and the, the, those technology that many mentioned it,
(16:16):
you know, I'm learning with him at the moment as well,
like VoiceOver from the iPhone or jaws. You know, those
from the computer, the laptop. Also, I have to, thanks
to the NDAs that, you know, giving us the funding,
those people that come into visibility and they all mostly
they have funding from NDAs, doesn't matter how far they live,
(16:41):
you know, catching train or buses, but they're still happy
to come.
S2 (16:45):
Yeah.
S4 (16:46):
Each week, you know, happy to come sharing experience, meeting
new friends, playing new songs.
S2 (16:54):
It's a sharing of experience that I want to highlight.
S1 (16:58):
You're listening to In Plain Sight on Vision Australia Radio
with Simon Cheung and me, Andrew Williams. Our guest this
week are Emannuel Li and Art Kinoshita. Members of a
music program for the vision impaired and the band formed
from that group. Grand illusions. And now it's back to Simon,
Emmanuel and Art.
S2 (17:18):
Art. You mentioned earlier that you've got some shows coming
up in November. And just to tell people, what's the
name of your band? I love the name of the band.
S4 (17:27):
The band Grand illusion.
S3 (17:29):
So Grand Illusions, that's the name of the band. Yeah.
S2 (17:33):
And and do you know where the shows are coming
up later in the year?
S4 (17:37):
The first one will be on the 2nd of November.
S3 (17:40):
Okay, so the first one is on the 2nd of November.
That's Sunday at Exhibition Centre. So this is for the
kids magazine I think for children that have disability. So
this is um, I forgot the name of the magazine,
but it's a children magazine. And then, uh, they tried
(18:00):
to promote their magazines, uh, as well as other organizations
that that will, like, be presenting over there.
S2 (18:10):
Can you tell us how people can find out about
the grand illusions? So and and if they just wanted
to watch you play, but also, more importantly, if they
wanted to get involved.
S3 (18:21):
So if they want to know where we perform, uh,
please contact visibility.
S2 (18:27):
If you're listening to the podcast, we'll put the description
of how to find.
S3 (18:31):
That's right.
S2 (18:31):
Find out about contact.
S3 (18:32):
Visibility and then.
S2 (18:34):
Or you can contact us directly.
S3 (18:37):
Exactly. Yeah.
S2 (18:38):
Um, yeah. And just to remind people, our email address
is in plain sight at Vision Australia. That's our email
is in plain sight at Vision Australia. I'll ask you,
what would you say to other people who are listening
to this conversation and hearing the joy that you guys
give about being part of this group and being part
(19:00):
of this program and what it's brought to you. What
would you say to other people to try to encourage
them to get involved, not only with this music program,
but with other interests and activities, like you were saying.
S4 (19:10):
For those people that have vision impaired or, you know,
totally blind. Please don't hesitate to come to joy at
their visibility. They have a lot of activities. You like
music or learning new technologies, gyms or pottery, cooking class.
So quite a lot, you know, for people that are interesting.
(19:34):
You know, it's better to get out, you know, and
join doing something.
S2 (19:37):
And I'll ask you, um, Art, can you tell me
what are some of the not give examples, but what
do you find that you learn a lot from talking
with the other people there about what they've experienced with
their vision loss?
S4 (19:50):
Yeah, we always share the experience from the past and
how they lost their vision. And I just share my
experience as well. So each day I meet a new
client or new people that, you know, go to visibility
and they're telling us about their experience, how they how
they lost, how they had the accident. They just can't
(20:11):
stay at home all day, all night. You know, that's
why they told us they need to get out, do something.
S2 (20:17):
Are you involved with any other activities or other sports
or whatever it might be within the blind community here
in Perth?
S4 (20:25):
Yes, I'm actually on Friday, which is I cancelled it today.
I play blind golf at the Claremont every Friday. I've
been joined with them for nearly four years now. Every
year we have competition and yeah, until end of November.
Then we have a three months break because the weather
is too hot to play.
S2 (20:45):
People find that fascinating.
S4 (20:46):
Oh yeah.
S2 (20:47):
Totally blind people playing golf. Yep. And I just wanted
to say how. especially something like golf and lawn bowls
and things like that, how important the volunteers are. We're
all about communication in Vision Australia radio and how important
communication is to those guides, like in golf or lawn
bowls or anything similar, where you have to give.
S4 (21:08):
Example, like golf, they have like volunteer to do, um,
helping us as a caddie. They're all professional, you know,
they're doing from from their heart. They love to come
and help, you know, because we only play for nine holes.
But each hole they just told us about and the distance,
how how far, how many meters.
S2 (21:27):
How how long have you been playing golf?
S4 (21:28):
Uh, four years.
S2 (21:29):
That's fantastic.
S4 (21:30):
Every Friday.
S2 (21:31):
Good luck with the golf. I hope it goes well.
As well as the, um. As well as the music.
What about you, man? Are you involved in any other
activities or or recreation in around the blind community here
in Perth?
S3 (21:43):
Uh, yes. I love my tandem bike riding. Aha. So
I joined that, uh, the club. That's right.
S2 (21:52):
We were talking about that just in a few weeks
ago on the program, because one of our volunteer readers here, Peter, he, um,
is a keen cyclist and he has been involved with
the tandem bike cycling here in Perth, uh, for a
number of years. So tell me what it is. You,
apart from the physical exercise with the tandem bike riding,
what is it you get from partaking, participating in the
(22:15):
tandem bikes?
S3 (22:16):
Basically the interaction with other people, with other visually impaired
people or sighted, uh, people in the club is just
amazing the way they sharing their lives, the tips, advice
they've given you or even they sharing their their life
story with you. So basically, it's an uplifting it's quite
(22:39):
encouraging for me. So, uh, people quite helpful and quite
good communicating with you because they know, uh, you are
visually impaired or totally blind?
S2 (22:50):
Yep. Do you have, um, an idea of how often
they have the social rise?
S3 (22:55):
So they have a social ride basically every single week.
But I'm there every fortnight riding with them. But they
have this ride every single Sunday. Yep.
S2 (23:06):
So every week there's an event going on. Correct. And again,
if you're listening to this on the podcast, um, and
you want to find out more about the tandem cycling, um,
we'll have a link to that on the podcast description
and the golf as well, because I think that's great
to to participate. And I believe you play. You were
saying you play guitar and you also do some singing
in the band.
S4 (23:27):
Sing as well. Yes, sing a few songs, 3 or
4 songs.
S2 (23:31):
And Manny, you were telling us before, but can you
tell us again? What's the name of the band?
S3 (23:35):
You've got a grand delusions.
S2 (23:36):
Grand delusions?
S3 (23:37):
Yep.
S2 (23:37):
And how many participants you got in that at the moment?
S3 (23:39):
So at the moment, nine. It's nine and then ten
with me.
S2 (23:43):
And you play keys.
S3 (23:44):
I play keys, so.
S2 (23:45):
And you do act like, do you act like the
music director Rector as well.
S3 (23:49):
Or are you? I'm sort of, uh, the the main
person that directing the music practice. But we have, uh, coordinator, like, uh,
she will help us with, with all the sound system
and then all the events and transporting, uh, all the
equipments to the event.
S2 (24:09):
Well, I think we'll finish up now. Art, is there
anything you'd like to leave the audience with before we
we we have to, uh, say goodbye.
S4 (24:17):
Oh, thank you for having us. Thank you. I'm happy
to be here. Yeah. Thank you. To share your experience.
S2 (24:23):
It's really great to to speak with you, Art. And
really was really quite interested in what you had to say.
And I'm sorry that we had such a short time to, uh,
get to know you a little bit, but we will
maybe have you in again. And it's always good to
get these personal insights from people who are living. You know,
as the saying goes, people with lived experience and people
(24:44):
who are living through being vision impaired. And both of
you have a similar story in that you had full
eyesight and up until a certain age. And I think
that's the, the, the hardest part of anyone will tell
you with an acquired disability, especially later in life. Um, Manny,
(25:05):
is there any thoughts or points you'd like to tell
us before we have to finish up?
S3 (25:10):
Uh, just one thing for people that are listening to
our podcasts. Uh, don't lose hope. Okay? There is help
out there. And then share your life with other people.
Don't be scared. Don't be ashamed. Okay. Go out there
and then try to talk to people. And then your
(25:33):
life will be changed.
S2 (25:35):
I totally, totally agree with that. And I echo those
statements completely. And as I said in a few weeks
ago about mental health, we've just experienced Mental Health Week
and October 10th was Mental Health Day. Going through something
as serious as losing your vision, no matter when it was,
leaves a traumatic scar with you and that can't be avoided.
(25:59):
So seek professional help if you need that. But just
talk with other people and there is nothing better. Whatever
your interest is, whatever your disability, your illness, your impairment,
whatever it is, find other people who are in a
similar situation and preferably find an activity you can share
with those people. And it's both art. And many have
(26:20):
told us here today that in between doing the activity,
you learn so much from the others about their personal
experiences and you all help each other along the way.
It's a beautiful thing. I'm really glad that you finished
up telling us about that. Many.
S3 (26:34):
Thank you. Yeah.
S2 (26:35):
So, Wolf. Yeah. Thanks, Art. Uh, so we'll close the
program for today, folks. And I really like to thank
Art and Manny for coming in and telling us about
the music program, um, at visibility and the fabulous band
The Grand Delusions. Check them out folks. If you get
a chance to see them, we will let you know
how to find that. And it's been a pleasure to
talk to you both this week. Thanks for coming in.
S3 (26:56):
Thank you for having us.
S2 (26:58):
And thank you too, for listening, people. And we will
talk to you next time and hope you can join
us then. Bye for now.
S1 (27:14):
That concludes in Plain Sight for this week. Join us
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
by Vision Australia Radio. Wherever you get your podcasts, or
ask your smart device to play in Plain Sight by
(27:35):
Vision Australia Radio. Thanks for listening.
S2 (27:38):
Thank you.
Hello and welcome to In Plain Sight, a program where
we highlight people who are making a positive impact in
the community and disability sector.
S2 (00:25):
Shining a light on those who would be otherwise hidden
in plain sight.
S1 (00:29):
And it's a pleasure to bring you these stories on
a weekly basis with you here on Vision Australia Radio.
S2 (00:35):
Hi, how are you going, Andrew?
S1 (00:36):
I'm very well this week. Simon. And you?
S2 (00:39):
I'm great. I really enjoyed our topic of discussion today, and, um,
it was really great to meet the two guests that
you will be listening to shortly. And also as this
program goes to air, it is Invisible Disabilities Week that
runs from the 19th to 25th of October. And as
(01:00):
someone with an invisible disability, I just wanted to make
mention of that and also make mention of the growing
movement taking place within this field of invisible disabilities, which
is represented by the sunflower. And if anyone knows me,
that is one of the reasons why I have sunflower
in my Facebook profile picture. Just one of the reasons.
(01:23):
The other reason is I like sunflowers. They look bright
and happy and wonderful. Invisible disabilities can be anything that
is not visible to an observer, that a person has
a disability, an impairment, or a severe illness that limits
them in some way. And we just wanted to make
acknowledgement of that. Andrew, do you have any information there
(01:45):
about Invisible Disability Week?
S1 (01:48):
Well, I guess some of the, the examples of of
invisible disabilities are things like autism and chronic fatigue or
anxiety or um, or such things, and also physical disabilities
as well. So for example, you might have a bad back.
Something as simple as that, as a permanent thing. So
you might have, um, trouble lifting a chair even to
(02:11):
something as simple as that. So the choir in which
I sing, the Perth Pride Choir, we have just adopted
the sunflower thing to which you've just referred Simon, and
we wear it on our name tags each week just
to show that, um, you know, that that particular person
might have trouble putting out the chairs at the start,
for example. So there's no expectation that that person is
(02:35):
going to be putting out the chairs. And just a
simple little thing like that can actually just make show
that whole thing and exactly make a difference. That's the
most important thing.
S2 (02:45):
And it's also, um, acknowledgement and solidarity and.
S1 (02:48):
Absolutely.
S2 (02:49):
Camaraderie. And that's one of the themes that gets brought
up in our discussion that you'll be hearing shortly. But
just to reemphasize what Andrew was just saying there, it's
also things like some people may have something like cerebral
palsy that affects their leg and it affects the way
they walk or their gait. And this could be interpreted
(03:09):
in so many different ways. Some people wouldn't recognize it
as a physical disability. They might think the person could
be impaired by alcohol or drugs or other things. That's
why they're walking weird and that type of thing. And
there are other illnesses and disabilities that impact people differently,
that are not visible to the outsider, that get interpreted
(03:33):
in ways that can be demeaning. And if that person
is wearing something like the sunflower on a badge or
a pin or something that indicates that they have an
invisible disability, and to please take note and to be
aware of that. Our guests coming up are Art and Manny,
and they are part of a really fabulous music program.
(03:55):
And the theme around that program is camaraderie and peer support,
and how they use music to incorporate peer support for
those who are going through vision impairment or learning how
to deal with their acquired blindness. And it's been a
pleasure to meet these two fellows, and I hope you
(04:16):
enjoy listening to the interview now. Thanks for joining us
once again on Vision Australia Radio. And today we've got
a lovely show lined up for you. It's all about
music and everyone loves music. And today we've got two
special guests in the studio with us, and they are
from the Visibility Music program and our guests are Emmanuel
(04:38):
Lee and Art Kanishka, and they are part of a
music program happening at Visibility in Victoria Park here in Perth.
And they also partake in a band that's called The
Grand Illusions. And I'll speak to you first. Manny. Emmanuel,
how are you?
S3 (04:53):
Good. Thanks. And thank you for this time.
S2 (04:56):
Well, thanks for joining us. We've been meaning to get
together for some time. Once I heard about this band
that you have got going on, our friend Lok Tang.
He told us about this many, many months ago. And
ever since then, I've been meaning to get you guys
to come in and tell us a little bit about
it before we get into the music program itself. Manny, um,
(05:17):
can you tell us because you are the assistive technology.
S3 (05:22):
Specialist.
S2 (05:23):
Specialist at visibility?
S3 (05:25):
That's right. Yeah.
S2 (05:25):
Can you tell us what assistive technology person does?
S3 (05:29):
Okay. Um, what I do at visibility as the assistive
technology specialist, uh, we conduct it assessment for clients. Um,
that means, uh, we have to find out what their
needs are for assistive technology. For example, if they have
(05:49):
problem with reading, we have to find a specific equipment,
IT equipment that suitable for that person. After assessment, we
also do training. So training can be with a device
can be with a software and also job access assessment.
(06:12):
We do worksite assessment as well and worksite training.
S2 (06:17):
In the broad picture. Who are the clients that you
see their blind and vision impaired and low vision, is
that right?
S3 (06:23):
Yeah, most of them are. They are blind vision impaired
or dyslexia or they have this, um, really strange condition.
The eyesight is normal, but the eyelid can shut, uh,
close any time. But the person is normal sighted. Yeah.
(06:43):
So we deal with, uh, different types of eye condition. Yeah.
S2 (06:48):
And can you just tell us some of the products
that you might be demonstrating in your, in your role there?
S3 (06:54):
Maybe I start with something simple like iPhone and like
Samsung phone. Yeah. So basically we uh, try to teach
client on how to answer call, uh, make calls, reading
text messages, incoming messages, and then, um, doing outgoing messages. Yeah,
something simple like that.
S2 (07:15):
So it's it it ranges from anything from as simple
as using your phone, correct. To more sophisticated computer work. Correct.
And things of that nature.
S3 (07:25):
That's right. Yeah.
S2 (07:26):
That's fantastic. And everyone needs help with that, especially when
you're new to to your vision loss or whatever it
might be. Changing. Changing circumstances. Now getting to the reason
you're here today, Mandy, how did you get involved with
this music program? I believe that you were one of
the instigators in trying to get this thing up and running.
As part of your involvement within the blind community that. Yes,
(07:47):
you're in there.
S3 (07:48):
Yep. That's right. So we started, uh, about 2015. That
time is just maybe the three four of us. We
had two guitarists, one bongo player, and he's still with
us until today. The bongo player.
S2 (08:05):
Okay. What's his name?
S3 (08:07):
Akbar. Akbar. Akbar. Yep. He's, uh. I think the best
bongo player that I've ever come across. A blind person
can play bongo very well. Yeah. And then the two guitarists,
one of them is Liam Haven. He's an an ex-army blind,
and he's playing guitar. And then, uh, basically he started
(08:30):
teaching clients on how to play guitar. And then I
was there to accompany with the keys, with the keyboard.
And then, uh, we just started to form. That little
group started with four people.
S2 (08:44):
Wow.
S3 (08:44):
Yeah. And then grew up the members just, you know,
added as we, uh, go on year after year. Oh,
right now we had about nearly ten, ten, ten members. Yeah.
Including lock.
S2 (08:58):
Now, I'll introduce Art into the conversation. Now, art, can
you introduce yourself, please?
S4 (09:02):
Yes. My name is Art, which is. I actually joined
the band, which is, um, about five years ago. Me
and Luke, we actually started the same time. First we
went there and just listened again and again until we
have the, um, discuss with many that if I can
join the band, because we have we both have the
(09:24):
skill of guitar as well. We've been playing guitar for
quite some time, year after year, but after we have lost,
I have lost my vision. I actually stopped completely. You know,
I just leave my guitar somewhere.
S2 (09:38):
Somewhere so you could play guitar prior to losing your vision.
So I'll get to.
S4 (09:43):
Start over again when I actually joined the band with
the money. So, um, yeah. Since then, you know, we've
been practicing every, every, every week and performs different places.
S2 (09:55):
So can I ask you, what is the nature of
your eye condition art?
S4 (09:58):
Um, the doctor diagnosed as a leber's, which is from
the family side. Genetics.
S2 (10:05):
And how how does that.
S4 (10:07):
Suddenly.
S2 (10:08):
How does that affect you?
S4 (10:09):
I can see about less than 10% both eyes.
S2 (10:13):
And is that the one that affects your optic nerve?
S4 (10:15):
Yes, yes. Optic nerve.
S2 (10:17):
That's I know about that because I have the same one.
So when did that when was that diagnosis made for you?
S4 (10:22):
14 years ago.
S2 (10:23):
14 years ago?
S4 (10:24):
Yep.
S2 (10:25):
So can I ask how old you were then?
S4 (10:27):
I was 40.
S2 (10:28):
Wow. Okay. It's a bit late. It usually comes in
much earlier than that. Yeah, so that must have been
quite a a shock. Traumatic experience.
S4 (10:37):
Yes. And very chocolate.
S2 (10:39):
Can I ask, how has the music helped with getting
more relaxed and familiar being vision impaired now?
S4 (10:46):
Been very relaxed. You know when you can get out
and enjoy the band. We learn the new things every week,
which is learning new songs, learning how to play different styles,
which is, um, this is the one that started introducing
new songs. He actually looked on each person, each of
us with skill. How much skill that each person may have.
(11:08):
Then can you sing this song? Then we learn new
songs every week like this. End of the year we
have like 6 or 7 performance different places and started from,
I think November, early November until December.
S2 (11:24):
And you said you played guitar prior to your eyesight failing. Mhm.
Was it much of an adjustment to learning and picking
up the guitar again when you're with your eyesight as
it is now.
S3 (11:37):
Um.
S4 (11:38):
No, because actually I know the most of the chords,
you know, all the basic chords. So I just really
have to do, just need practice, bring back my memories.
She's been stopped after years and that I have lost
my vision. So just keep practicing. And man, it's been
helping me a lot.
S2 (11:57):
And many your vision impaired as well.
S3 (12:00):
That's right.
S2 (12:00):
Yeah. And have you been vision impaired all your life
or what's the story there?
S3 (12:04):
So I didn't know that I have retinitis pigmentosa started
when I was in high school and in high school I,
I just can't see the board and then went to
check my eyesight to, um, not specialists, just the practitioner. Just, um,
(12:26):
just that day, uh, they prescribed me with the glasses
and I thought, oh, okay, I just need the glasses.
So I live with that for years and years. Up
until one day I was, um, riding a motorbike, had
an accident with a car. It wasn't my fault. It
was the other car that crashed into the motorbike. So
(12:48):
that day, um, my uncle told me to go to
the hospital. And then I didn't realize that my vision just, uh,
going downhill suddenly. Yeah. but I still can see. I
still can go to school. To uni. Um, drive a car.
But I decided to to go to a specialist. Uh,
(13:10):
this is back in Sydney, and a specialist said, oh,
you have this condition. It's advanced AP. I said, what
is it? It's AP, it's affecting your retina. And then, um,
what is retina? And then he said, it's like a
camera in your eye and it's damaged. Yeah. And then
he said, this is, uh, genetic. I said, oh, okay. Um,
(13:32):
so from there, I realised I have this condition, which
I don't know. And then I asked my parents and
they said, no, we don't have anyone in the family
with RP.
S2 (13:43):
So how long ago was that?
S3 (13:44):
That was 1993. 92? Yeah. 93.
S2 (13:50):
And as Art was saying, being part of the band
that you're in, what did you do back then to
lift your spirits and to find the camaraderie that you've
created here.
S3 (13:59):
Okay. Now, um, why we came up with this band.
Because when I was talking to Liam, basically, he had
trauma from the war. And then also the bomb that
blasted his, uh, army truck, and then he got blinded. Yeah.
So many of those people. Uh oh, I can I
(14:22):
can say, like, generally people that lost vision, like we
lost hope or something that we can do, we no
longer can do. So how we can bring back the hope,
the happiness, the joy. So we decided to have this
(14:43):
music group to basically share our joy. And we tell
the people that they still hope, even though you can't see.
But there is something else that we can share to
other people that there is hope beyond this condition, beyond
your either your sickness or if it's cancer, tumor or
(15:07):
blindness or something else, that there is hope. So the
message is hope. All about hope and joy.
S2 (15:14):
Yeah, I'm a big favor of all that. And I
know from my own personal experience the shared learning, the shared, um,
doing of whatever activity it is under these circumstances. In
this case, you're playing music. Yes. But I can also
envisage that in between participants playing music, they're sharing their stories,
(15:38):
for better or for worse. The pros and cons of
being vision impaired. Is that right?
S3 (15:43):
Absolutely, yeah.
S2 (15:44):
Do you want to talk about that at all? Art.
What what the conversations are like with your fellow band
members around the vision problems?
S4 (15:52):
I'm very happy, you know, to be one of the
band member. Um, Firstly, I have to thank the visibility that's,
you know, introducing me not only the music, you know,
they have a lot of activities which is I'm joined
quite a few of them activities. But the music and
the um and the, the, those technology that many mentioned it,
(16:16):
you know, I'm learning with him at the moment as well,
like VoiceOver from the iPhone or jaws. You know, those
from the computer, the laptop. Also, I have to, thanks
to the NDAs that, you know, giving us the funding,
those people that come into visibility and they all mostly
they have funding from NDAs, doesn't matter how far they live,
(16:41):
you know, catching train or buses, but they're still happy
to come.
S2 (16:45):
Yeah.
S4 (16:46):
Each week, you know, happy to come sharing experience, meeting
new friends, playing new songs.
S2 (16:54):
It's a sharing of experience that I want to highlight.
S1 (16:58):
You're listening to In Plain Sight on Vision Australia Radio
with Simon Cheung and me, Andrew Williams. Our guest this
week are Emannuel Li and Art Kinoshita. Members of a
music program for the vision impaired and the band formed
from that group. Grand illusions. And now it's back to Simon,
Emmanuel and Art.
S2 (17:18):
Art. You mentioned earlier that you've got some shows coming
up in November. And just to tell people, what's the
name of your band? I love the name of the band.
S4 (17:27):
The band Grand illusion.
S3 (17:29):
So Grand Illusions, that's the name of the band. Yeah.
S2 (17:33):
And and do you know where the shows are coming
up later in the year?
S4 (17:37):
The first one will be on the 2nd of November.
S3 (17:40):
Okay, so the first one is on the 2nd of November.
That's Sunday at Exhibition Centre. So this is for the
kids magazine I think for children that have disability. So
this is um, I forgot the name of the magazine,
but it's a children magazine. And then, uh, they tried
(18:00):
to promote their magazines, uh, as well as other organizations
that that will, like, be presenting over there.
S2 (18:10):
Can you tell us how people can find out about
the grand illusions? So and and if they just wanted
to watch you play, but also, more importantly, if they
wanted to get involved.
S3 (18:21):
So if they want to know where we perform, uh,
please contact visibility.
S2 (18:27):
If you're listening to the podcast, we'll put the description
of how to find.
S3 (18:31):
That's right.
S2 (18:31):
Find out about contact.
S3 (18:32):
Visibility and then.
S2 (18:34):
Or you can contact us directly.
S3 (18:37):
Exactly. Yeah.
S2 (18:38):
Um, yeah. And just to remind people, our email address
is in plain sight at Vision Australia. That's our email
is in plain sight at Vision Australia. I'll ask you,
what would you say to other people who are listening
to this conversation and hearing the joy that you guys
give about being part of this group and being part
(19:00):
of this program and what it's brought to you. What
would you say to other people to try to encourage
them to get involved, not only with this music program,
but with other interests and activities, like you were saying.
S4 (19:10):
For those people that have vision impaired or, you know,
totally blind. Please don't hesitate to come to joy at
their visibility. They have a lot of activities. You like
music or learning new technologies, gyms or pottery, cooking class.
So quite a lot, you know, for people that are interesting.
(19:34):
You know, it's better to get out, you know, and
join doing something.
S2 (19:37):
And I'll ask you, um, Art, can you tell me
what are some of the not give examples, but what
do you find that you learn a lot from talking
with the other people there about what they've experienced with
their vision loss?
S4 (19:50):
Yeah, we always share the experience from the past and
how they lost their vision. And I just share my
experience as well. So each day I meet a new
client or new people that, you know, go to visibility
and they're telling us about their experience, how they how
they lost, how they had the accident. They just can't
(20:11):
stay at home all day, all night. You know, that's
why they told us they need to get out, do something.
S2 (20:17):
Are you involved with any other activities or other sports
or whatever it might be within the blind community here
in Perth?
S4 (20:25):
Yes, I'm actually on Friday, which is I cancelled it today.
I play blind golf at the Claremont every Friday. I've
been joined with them for nearly four years now. Every
year we have competition and yeah, until end of November.
Then we have a three months break because the weather
is too hot to play.
S2 (20:45):
People find that fascinating.
S4 (20:46):
Oh yeah.
S2 (20:47):
Totally blind people playing golf. Yep. And I just wanted
to say how. especially something like golf and lawn bowls
and things like that, how important the volunteers are. We're
all about communication in Vision Australia radio and how important
communication is to those guides, like in golf or lawn
bowls or anything similar, where you have to give.
S4 (21:08):
Example, like golf, they have like volunteer to do, um,
helping us as a caddie. They're all professional, you know,
they're doing from from their heart. They love to come
and help, you know, because we only play for nine holes.
But each hole they just told us about and the distance,
how how far, how many meters.
S2 (21:27):
How how long have you been playing golf?
S4 (21:28):
Uh, four years.
S2 (21:29):
That's fantastic.
S4 (21:30):
Every Friday.
S2 (21:31):
Good luck with the golf. I hope it goes well.
As well as the, um. As well as the music.
What about you, man? Are you involved in any other
activities or or recreation in around the blind community here
in Perth?
S3 (21:43):
Uh, yes. I love my tandem bike riding. Aha. So
I joined that, uh, the club. That's right.
S2 (21:52):
We were talking about that just in a few weeks
ago on the program, because one of our volunteer readers here, Peter, he, um,
is a keen cyclist and he has been involved with
the tandem bike cycling here in Perth, uh, for a
number of years. So tell me what it is. You,
apart from the physical exercise with the tandem bike riding,
what is it you get from partaking, participating in the
(22:15):
tandem bikes?
S3 (22:16):
Basically the interaction with other people, with other visually impaired
people or sighted, uh, people in the club is just
amazing the way they sharing their lives, the tips, advice
they've given you or even they sharing their their life
story with you. So basically, it's an uplifting it's quite
(22:39):
encouraging for me. So, uh, people quite helpful and quite
good communicating with you because they know, uh, you are
visually impaired or totally blind?
S2 (22:50):
Yep. Do you have, um, an idea of how often
they have the social rise?
S3 (22:55):
So they have a social ride basically every single week.
But I'm there every fortnight riding with them. But they
have this ride every single Sunday. Yep.
S2 (23:06):
So every week there's an event going on. Correct. And again,
if you're listening to this on the podcast, um, and
you want to find out more about the tandem cycling, um,
we'll have a link to that on the podcast description
and the golf as well, because I think that's great
to to participate. And I believe you play. You were
saying you play guitar and you also do some singing
in the band.
S4 (23:27):
Sing as well. Yes, sing a few songs, 3 or
4 songs.
S2 (23:31):
And Manny, you were telling us before, but can you
tell us again? What's the name of the band?
S3 (23:35):
You've got a grand delusions.
S2 (23:36):
Grand delusions?
S3 (23:37):
Yep.
S2 (23:37):
And how many participants you got in that at the moment?
S3 (23:39):
So at the moment, nine. It's nine and then ten
with me.
S2 (23:43):
And you play keys.
S3 (23:44):
I play keys, so.
S2 (23:45):
And you do act like, do you act like the
music director Rector as well.
S3 (23:49):
Or are you? I'm sort of, uh, the the main
person that directing the music practice. But we have, uh, coordinator, like, uh,
she will help us with, with all the sound system
and then all the events and transporting, uh, all the
equipments to the event.
S2 (24:09):
Well, I think we'll finish up now. Art, is there
anything you'd like to leave the audience with before we
we we have to, uh, say goodbye.
S4 (24:17):
Oh, thank you for having us. Thank you. I'm happy
to be here. Yeah. Thank you. To share your experience.
S2 (24:23):
It's really great to to speak with you, Art. And
really was really quite interested in what you had to say.
And I'm sorry that we had such a short time to, uh,
get to know you a little bit, but we will
maybe have you in again. And it's always good to
get these personal insights from people who are living. You know,
as the saying goes, people with lived experience and people
(24:44):
who are living through being vision impaired. And both of
you have a similar story in that you had full
eyesight and up until a certain age. And I think
that's the, the, the hardest part of anyone will tell
you with an acquired disability, especially later in life. Um, Manny,
(25:05):
is there any thoughts or points you'd like to tell
us before we have to finish up?
S3 (25:10):
Uh, just one thing for people that are listening to
our podcasts. Uh, don't lose hope. Okay? There is help
out there. And then share your life with other people.
Don't be scared. Don't be ashamed. Okay. Go out there
and then try to talk to people. And then your
(25:33):
life will be changed.
S2 (25:35):
I totally, totally agree with that. And I echo those
statements completely. And as I said in a few weeks
ago about mental health, we've just experienced Mental Health Week
and October 10th was Mental Health Day. Going through something
as serious as losing your vision, no matter when it was,
leaves a traumatic scar with you and that can't be avoided.
(25:59):
So seek professional help if you need that. But just
talk with other people and there is nothing better. Whatever
your interest is, whatever your disability, your illness, your impairment,
whatever it is, find other people who are in a
similar situation and preferably find an activity you can share
with those people. And it's both art. And many have
(26:20):
told us here today that in between doing the activity,
you learn so much from the others about their personal
experiences and you all help each other along the way.
It's a beautiful thing. I'm really glad that you finished
up telling us about that. Many.
S3 (26:34):
Thank you. Yeah.
S2 (26:35):
So, Wolf. Yeah. Thanks, Art. Uh, so we'll close the
program for today, folks. And I really like to thank
Art and Manny for coming in and telling us about
the music program, um, at visibility and the fabulous band
The Grand Delusions. Check them out folks. If you get
a chance to see them, we will let you know
how to find that. And it's been a pleasure to
talk to you both this week. Thanks for coming in.
S3 (26:56):
Thank you for having us.
S2 (26:58):
And thank you too, for listening, people. And we will
talk to you next time and hope you can join
us then. Bye for now.
S1 (27:14):
That concludes in Plain Sight for this week. Join us
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
by Vision Australia Radio. Wherever you get your podcasts, or
ask your smart device to play in Plain Sight by
(27:35):
Vision Australia Radio. Thanks for listening.
S2 (27:38):
Thank you.
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Are You A Charlotte?
In 1997, actress Kristin Davis’ life was forever changed when she took on the role of Charlotte York in Sex and the City. As we watched Carrie, Samantha, Miranda and Charlotte navigate relationships in NYC, the show helped push once unacceptable conversation topics out of the shadows and altered the narrative around women and sex. We all saw ourselves in them as they searched for fulfillment in life, sex and friendships. Now, Kristin Davis wants to connect with you, the fans, and share untold stories and all the behind the scenes. Together, with Kristin and special guests, what will begin with Sex and the City will evolve into talks about themes that are still so relevant today. "Are you a Charlotte?" is much more than just rewatching this beloved show, it brings the past and the present together as we talk with heart, humor and of course some optimism.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.