November 25, 2025 • 29 mins
Lizzie Eastham and Sam Rickard present Studio 1 - Vision Australia Radio’s weekly look at life from a low vision and blind point of view.
On this week’s show
“Annette and Valda”
How can losing sight reshape your identity; relationships; and daily life. We also ask what adaptations people make to rebuild and thrive.
Lizzie talks to two women about how losing their sight changed their lives; how their connections to family and friends enabled them to recover; and how that has affected their lives going forward.
Studio 1 welcomes any input from our listeners. If you have any experience or thoughts about issues covered in this episode or believe there is something we should be talking about.
You may also be interested in joining our choir of angels and telling your story.
EMAIL: studio1@visionaustralia.org or leave comment on the station’s Facebook page: https://www.facebook.com/VARadioNetwork
A special thank you to Valda and Annette.
Resources:
Save Sight Institute:
Located at the Sydney eye hospital, 8 Macquarie Street, Sydney.
Sydney.edu.au
Phone: 02 9382 7300.
See Differently Peer Support & counselling.
Website: Address https://seedifferently.org.au/news/peer-support-how-pauls-vision-loss-is-empowering-others/
Vision Australia: vision loss page
Website: https://www.visionaustralia.org/services/helpful-resources/carers/supporting-someone-in-vision-loss
This program was made possible with support from the Community Broadcasting Foundation. Find out more at https://cbf.org.au/
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 (00:13):
This is Studio One with Sam Rickard and Lizzie Eastham
on Vision Australia radio.
S2 (00:25):
Hi, I'm Lizzie.
S3 (00:26):
And I'm Sam.
S2 (00:27):
And you're listening to studio one. Vision Australia, Radio's weekly
look at life from a blind and low vision point
of view.
S3 (00:33):
This week, once more, we tackle the topic of vision loss.
S2 (00:36):
How can losing sight reshape our identity, relationships, and daily life?
We ask, what adaptations do people make to rebuild and thrive?
S3 (00:46):
As we always say at this point, please do get
in touch with the show. Whether you have experience of
any of the issues covered on this week's episode of
Studio One, or if you think there is something we
should be talking about. You never know. Your story and
insight may help somebody else who is dealing with something similar.
S2 (01:00):
You can contact us via email at Vision Australia. That's
studio number one, Vision Australia. Or of course, you can
drop us a note on our Facebook page by going
to facebook.com Slash VA radio network.
S3 (01:16):
Hello, Lizzie. How goes it?
S2 (01:18):
It is glorious. Glorious. I'm doing very well. Thank you,
Sam and yourself.
S3 (01:22):
Well, I'm moderately annoyed, I've got to say, because there
was this group of shops that were just around the
corner from where we are now, and they were demolishing it.
And every time they demolish a site, whether it be
a commercial site or whatever, I hope for something better
to be built there. So whether it would be like
a fast food place, okay, that's open to temptation, or
(01:43):
at least another shop or something like that. And what
are they built there?
S2 (01:47):
Tell me, I'm sure I don't know.
S3 (01:48):
A car park. The most useless thing for people like ourselves.
It seems to be a very busy car park, so
obviously it's been needed, but my whole sense of anticipation
has now just gone through the floor.
S2 (02:02):
Yeah. Me too. I was quite hoping for a really
nice cafe, you know, somewhere decent to eat, some lunch
that doesn't involve servo pies or a 15 minute hike.
But hey, yeah, burgers can't be choosers.
S3 (02:13):
So you got some some way for people to park
their cars. That's great. All right, so, um, we have
a packed show this week. We've got two amazing guests
who are going to be talking about losing their sight.
Something that we don't really have much experience with ourselves,
because what we've got is what we've always had.
S2 (02:30):
Yes, that's correct. But I have made a lot of
friends over the years, just in my experience of being
blind with people who are losing their vision or have
lost their vision suddenly. And so this topic in particular
touches my heart. And I think it's really important to
address because people tend to catastrophize vision loss. Well, I mean,
we don't, but sighted people tend to think, what would
(02:53):
happen to me? I just couldn't I couldn't handle it.
I couldn't live if, you know, and then they catastrophize
it and then all of a sudden, maybe one day
down the track, they do lose their vision and a
lot of people just lose their heads.
S3 (03:05):
Well, you actually see this with older people as well because,
I mean, vision loss is something that just happens as
a part of old age And yeah, some people think
that their lives are over because they've built their entire
world around being able to see stuff.
S2 (03:19):
Yeah, I get what you're saying. But with Valda, who
is the second guest that we are featuring on today's show,
she lost her sight just one month shy of her
74th birthday, and she has not taken it lying down.
In fact, she has taken the bull by the horns
and now lives a really amazing life.
S3 (03:36):
In the meantime, however, let us talk to Annette.
S4 (03:43):
I was born with poor sight and it had deteriorated
all my life for various genetic reasons, but it absolutely
collapsed and it was a huge shock around menopause, which
apparently is the time for women when genetic conditions will
surface if they haven't already. And I went from about
just over 10% to 2% very, very quickly. Um, no
(04:07):
peripheral vision at all. And at the time I was
a senior executive in the public service. I had no
expectation that that was going to happen to me and, well,
it was devastating initially. I hasten to add that there's
a happy ending to the story, but the initial reaction,
I think, perfectly understandably, was shock and grief and fear.
(04:30):
How am I going to manage my life?
S2 (04:33):
How did you first start to notice these changes in
your vision, and how were you managing your day to
day independence at that time?
S4 (04:40):
I started getting lost and then I started having terrible,
terrible falls. And I guess they were the big warning
signs that something was up. So I actually sought help
before it was confirmed that that I was legally blind.
And then it went from legally blind to not seeing
very much at all very quickly. But I had learnt
to adapt myself just from necessity, which anybody living with
(05:03):
any kind of disability does as best they can. You
have to adapt to suit your circumstances. So, for example,
I was feeling my way along walls, or writing myself
notes about where corners were or where I parked the car.
Having said that, I did give up driving of my
own accord when I just didn't think I could see
well enough anymore. So that's one thing I'm grateful for
(05:26):
that I decided to stop driving rather than having it
imposed on me. I still miss it, and that's probably
one of the biggest losses in inverted commas. That loss
of independence. But also I just enjoyed driving. I still
like fast cars, but lack of vision and fast cars
aren't a good mix.
S2 (05:43):
Can you tell us about some of the aids or
adaptations you found most helpful, and how they made a
difference in your daily life?
S4 (05:51):
One of the first places I approached was what is
now known as See Differently with the RSV. At the time,
it was Royal Society for the blind because they had
a shopfront in the city with practical aids to assist
just getting through daily life, as well as ophthalmologists and optometrists.
So I started with some practical aids, buying them from
there and then seeking more medical help, finding out what
(06:14):
was going on. And that was done not through there,
but other professionals. But they were a fabulous help. So
I've started with things like a headlamp to where if
I was going home in the dark and it was
an LED light so I could see my way around
local streets, and just something as basic as that, and
then things for around the house and then of course,
(06:35):
progress to mobility training and obtaining the international white cane.
And after that, my first guide dog after a lot
of training, of course, and they were the turning points.
I vividly remember the cane and the first time I
used it and a feeling of freedom. But of course
you're still isolated with a cane and it just doesn't
(06:56):
have the psychological support of the dog.
S2 (06:59):
When your family, friends and colleagues began to notice the
rapid deterioration in your vision, what were their reactions?
S4 (07:07):
My family was horrified and shocked like I was when
my vision deteriorated so quickly. It was just a huge
blow to everyone. And similarly friends. I changed workplaces several
times in that time, and a couple of them were very,
very supportive. But the third was quite the reverse. And
(07:28):
in fact, led to me leaving that particular job and
never returning to that work. But it wasn't because of
the colleagues. It was attitudinal barriers, shall we say.
S2 (07:39):
Since losing your vision, you've become involved in several causes
and committees that challenge stereotypes and fight discrimination. What motivated
you to take on this advocacy work?
S4 (07:49):
Just through circumstances. But I think it's more accepting opportunities
and refusing to take discrimination as an option. I just
find it so unacceptable. And I'm in a position where
I've been in a type of employment and had the
education to have the contacts and also the skills to
be able to speak up and use the voice to
(08:10):
stand up against inappropriate attitudes and behavior. And where I
would have been less inclined, although I still used to
always speak up against injustice. So that tendency was always there.
And when I think back, I sort of I've always
rallied against things that I find really unacceptable. And that
has led to meeting the most amazing people from all
(08:33):
walks of life. And through that, being invited to participate
in activities that use the skills I had and learn
new ones. It really is a combination of everything I've
ever learned and workplace I've ever been in. So, for example,
I'm about to start as a panel member assessing applications
for new grants, a new grant round in South Australia,
(08:55):
and that came from other boards and committees and councils
I'm on, where I've assessed applicants for awards and other grants,
and been in the sort of circles where I've learnt
about law and the requirements of these roles, but I
sort of have a broad view or picture of how
people and systems can be inclusive and accessible and kinder
(09:17):
for everyone, not just people living with disability. I feel
really privileged and honored to be given this opportunity to
assess the applications, along with a few other people, because
it's something that really matters to me. The correct and
just awarding of grants is so important and needs to
be transparent, and it's a privilege to be able to
(09:40):
be involved with that. It's also a lot of work,
but nothing good comes from sitting around doing nothing, if
that makes sense.
S2 (09:46):
Now, our listeners may recall an episode at around about
this time last year where we spoke to you and
author Bobby Robinson about a book that you released about
your guide dogs and the way that they have impacted
your journey with vision loss.
S4 (10:04):
It's for everyone. It's a picture book, but it's aimed
at anyone of any age. The story is true and
the paintings are taken from my photos. It's all real
and it's one some human rights awards and it's gone
crazy over in Zambia. It's also been really well received
(10:24):
in the UK and in New Zealand because it's about
human rights, but also that when something goes wrong, it's
good still comes of it. It doesn't have to be terrible.
So I guess it's all about resilience to that. Just
because I can't see doesn't mean I can't do things,
but that some people thought that I couldn't. We know
our abilities or what our hopes and aspirations are. All
(10:47):
of us, no matter how young we are. And it's
up to us to decide what we want to tackle
or face. Not to be told by someone else what
we can't do.
S2 (10:56):
What would be your message to someone who is suffering
from sudden or dramatic vision loss?
S4 (11:01):
Above all, don't give up. I certainly was very depressed
and anxious, and I did wisely, as it turned out,
except the help of a grief counselor from RSV. Then
now it see differently. But always seek some medical assistance
or professional assistance, I should say, and talk through the
feelings because they're natural. Yes, everything is changing and it
(11:22):
will change, but it's not the end. In fact, I've
learned it's just the beginning. The beginning of a whole
wonderful new life of things that in my wildest dreams,
I would never have considered. I've just been overseas learning
to and starting to write the libretto for an opera,
because I decided I wanted to do it. I guess
it points out what's important in life. There's nothing like
(11:45):
losing a faculty or having something taken away to really
make you understand that. Okay, well, this is what I
want to do. And then after this, I'll move on
to something else, probably because I'm like that. And of course,
I'm not positive all the time. But no point being
miserable though, and especially when I do have such a
fabulous life and above all, such fabulous people surrounding me.
(12:07):
That's actually the key. Such wonderful family and friends. It's
really all about the people who lift us up. And
if you don't find your tribe the first place you look.
Keep looking. Certainly don't become isolated. That's the worst possible thing.
So look for where you belong. And people who enrich
(12:27):
your life and aren't always sort of giving you pity.
Because that's the last thing we need. We need to
be just part of the community. In fact, they'll be
really happy when everybody treats anyone with a disability as
just another person.
S3 (12:42):
Okay. Thank you, Annette, for your insights. So, Lizzie, you've
done a bit of research for this episode.
S2 (12:47):
I have, I have. Yes. Firstly because I wanted to
put some resources in the podcast notes for those that
are listening. But yeah, I've found some really good pages,
really good places around that are more national because I
understand every state has their own organisations. But the Save
Sight Institute is part of the Sydney Eye Hospital and
(13:10):
they are training the next generation of optometrists, ophthalmologists, any
eye specialists, and they're currently doing some different clinical trials.
Friend of the show, Lily piccolo, is currently involved. Maybe
she can tell us what that's all about. But, you know,
that thing is about preventing vision loss and saving sight,
I suppose. But also Vision Australia has their own wellbeing
(13:33):
page and it has lots of different resources and points
you towards different places and people that you can call
if you're dealing with vision loss, just based in South Australia,
we have see differently and they currently have a peer
support and counselling phone line up and running. So you
can call this line if you or someone you know
(13:54):
is dealing with vision loss and they will actually put
you in contact with somebody who lives with vision impairment
or has experienced vision loss. I remember being on the
Co-designing committee to create this peer support network, and it
seemed like I had a lot of promise and potential then,
and it's good to see that it's up and running
and doing really well now and well.
S3 (14:15):
I mean, it's something that if you are listening and
you are losing your sight, um, then what you've got
to remember is there's sight loss is one thing, but
also keeping your head together is another, because, well, it
would blow my brain if I lost any more eyesight. So, um.
Just stay. Stay with us. Know that you're not the
only one out there. And it's not the end of
the world either. Anyway, who's our next guest?
S2 (14:37):
Valda.
S5 (14:43):
Yes. Mine was unusual. My condition is caused by artery problems.
And frustrating as it was, I went to the doctor
on April the 21st and she said, go home. You're boring.
Your blood pressure is under control. You have no diabetes,
your cholesterol is fine. You're walking and you're weights. Okay.
(15:06):
And on May the 8th I was in hospital and
had lost my sight and they told me I had
giant cell arteritis, which is giant cell arteritis, and they
remove the artery from the right side of my right eye,
which has completely lost sight because the optic nerve has failed.
(15:28):
I did not have the symptoms of giant cell as such.
If I'd gone to hospital a couple of days earlier,
they would have saved more sight because I spent a
week in hospital on five bags of predisolone one a day,
and came home on 60mg of prednisolone for a week,
50 for a week, 40 for a week, and then
(15:50):
gradually down to nothing after 18 months. But that's what
saved my 10% sight that I have.
S6 (15:56):
So before this rapid deterioration in your vision, you had
full sight. Is that correct?
S5 (16:02):
I had full sight with glasses and I'd been assured
by my optician that I didn't have glaucoma, and cataracts
were probably eight years away. My right eye had been
shutting about 1030 at night. This was from about the April,
but I'd been reading a 500 page book and I thought,
I'm tired, I go to bed. And then one of
(16:23):
the opticians said, you've got dry eyes here, have some
ointment for dry eyes. So when I had this episode
on the Saturday up at the shopping centre, when I
lost my sight for maybe 15 minutes, I waited. I
drove home the Sunday, drove to my daughter's, caught the bus,
went to football, came home from the football. No problems
at all. On the Monday morning I thought, okay, I'll
(16:46):
go to another optician and see what they say. And
the comment was six out of six with glasses. So
I went up to uni three a and I was
sitting in my Italian class and all of a sudden
my left eye had a flash. Came back after about
a couple of minutes. I drove home. That was the
last day I drove my car. Thursday I went to
(17:08):
see my grandson and I think that's when the right
eye went on the Friday I went to the doctor
and he sort of ignored me. I said, I need
an eye specialist. I rang up the eye specialist. They said,
three months. I said, I cannot wait three months. And
on the Saturday my girlfriend had encouraged me to go
over to the chemist and she sent me back to
my original optician. He examined my head behind the eyes
(17:30):
and said, you've got something drastically wrong. And by the
time I got to Adelaide Hospital, the eye specialist was
ringing and she oversaw the treatment I had.
S6 (17:40):
So paint us a picture of what your life was
like before you suddenly lost your sight.
S5 (17:45):
I was very active. I lost my sight at just
one month short of 74. I had worked until I
was 70. I spent 37 years in the country teaching
primary school students, coaching sport, involved in lions and the
yacht club and the church and. yet I coached a
(18:07):
grade level team before I came to Adelaide. And when
I came to Adelaide, I continued my involvement with Lions
and I was a zone chairman, a region chairman, and
then I was secretary of the Lions Club for two years.
And just before I lost my sight, I was assistant
treasurer on the computer. But when I lost my sight,
I was told, bad luck. You're a Caucasian woman over
(18:29):
the age of 50. This is not hereditary. However, in
amongst my treatment, when I had a Cat scan, they
found out that yes, I did have a stroke in
2000 and I have got a blockage in the left
stem of my brain. So now I am under a
heart specialist and eye specialist and a rheumatologist because my
(18:53):
illness is an autoimmune disease.
S6 (18:55):
Given that your life had been so rich and full
and active before you lost your sight, can you talk
us through some of the emotions that you went through
when this originally all started happening?
S5 (19:07):
I was devastated, absolutely devastated because I retired end of 219.
Covid hit. You know, I've only had a couple of
years of free life going U-3a, going to Probus and
mixing with friends. And yes, I was upset and then
I became a burden on my daughter, who is an
extremely busy lady. Besides her work, she has three teenage
(19:31):
children and they decided to let me go home. And
so there I was, home at my daughters, and I
was so frustrated because I couldn't read and I couldn't
use my phone. I was sinking into the ocean, basically.
But my daughter, with her experience, managed to get into care.
And the best thing that happened was that I got
(19:52):
a counsellor who understood and she said, yes, you've got
to go home. So July the 4th, I came home
and I had support. And when I look back, I've
had fantastic support from family and friends. I don't know
whether that's because I was a sighted person, but it
(20:13):
really shocked my friends. Absolutely, because I'd been so fit
and healthy.
S6 (20:20):
You touched on the amazing support of family and friends.
What are the sorts of support did you receive at
this time?
S5 (20:28):
The best support I had was a very, very skilled
counsellor psychologist from PHE differently and I went to a
group session with her. She did the two individual ones
with me and then she did a group therapy. And
I also had a care plan with the support of
a psychologist, which enabled me to go back to some strategies,
(20:50):
but also around the same time I applied to Beyond
Blindness and they gave me half the money towards a iPad,
and my friends put books on the phone on the
iPad for me. I can add 22 books on my
iPad and I'm now back to reading. As such, I
hated it to begin with, but I couldn't read for myself.
(21:11):
But I have now got used to it, and I
have two extremely good friends that worked with me. One
comes and walks with me every Tuesday, picked me up.
We go for a walk, discuss books and whatever the
other girlfriend. That really helps me, picks me up for progress,
and then she picks me up for our fortnightly walk
with the other girls from Probus. So those five people
(21:35):
have been my support network outside of any government support.
I was originally put on level two, which I fought against.
So before I finished with the OT on the Commonwealth
Home Support, I said to her, I want you to
do an assessment of my sight. I said, send it
to my provider. I then had a phone call from
(21:58):
Aged Care and they said they'd do a phone interview
in February. I did not get level three. Finally, in
the November I my daughter pushed a bit more and
my provider pushed a bit more. And I had a
phone call from this woman who said, okay, Val, I
used to be a nurse and my father's blind. And
(22:19):
she said, how do you feel? Etc. I said, I
want some help to be able to read and I
want some help generally, you know, to get back. And
she said, within three days I'll have the report written
and you'll get level three within 1 to 3 weeks.
I had level 3 in 1 week. Meanwhile, before I'd
(22:39):
lost my sight, I had booked a trip to Kangaroo
Island and I had to ring up Phil Hoffman and
cancel it. And the girl said, you know, Beyond Blindness
has just been to Kangaroo Island on a trip. And
so from that, my daughter then contacted me on blindness.
And two things happened with that because I started walking
(22:59):
with the group, I'd only got exercise, but thought. I
learned of other people's blindness, and I also was able
to connect socially. And in that connection, twice a week
has been very, very significant for me. And I've been
to the travel club, which means it got me out
(23:20):
of the house. So I'm back to being active again.
My shopping lady is absolutely fantastic. She picks me up
from hydro once a week. My cleaning lady is also fantastic.
She comes once a fortnight and I have finally got
the reading machine I want after the first six months.
(23:41):
I accepted my blindness and said, well, there's plenty of
people worse off in life and I've got the support
of all these friends.
S2 (23:50):
What are some of the adaptive technologies and accessible apps
that help you most in your day to day life?
S5 (23:56):
The little soft stickers that you put your fingers on
that's enabled me to use my microwave. I don't need
adaption for that. I use my microwave, my air fryer, uh,
my kettle. I can see enough do it on the sink.
But that CCTV enabled me to read my stock powder
and that sort of thing. The phone has been my
(24:20):
lifeline because once I have got the contacts in my phone,
I can then send messages and I can ring people
and I can get my emails on the phone. I
have got freedom. Topaz. It's cool. You can change colors,
you can change sizes and you can focus it. And
if you still can't read it, press a screen and
(24:42):
therefore you can have it printed and it will read
it to you. And even if I want to, I
can say that on the file. So that has given
me the opportunity to write things and see that little
bit better. And now I am pushing for the glasses
because I can catch the bus into the city, But
then I cannot read the name of the shops, etc.
(25:06):
and these meta glasses will enable me to do that.
They will also enable me to go out in my
garden and say, is this green or is this brown?
That sort of thing. I didn't claim them as glasses.
They are adaptive technology. And also I've had transition glass
put in. They're not lenses. I've also got hearing aids.
(25:28):
And I was given this clue that if you're blind
and deaf, you can get free hearing aids from the government.
And initially I spent money because I didn't know that.
But now I have upgraded to much better hearing aids.
And those hearing aids go straight into my phone.
S2 (25:45):
If there is anyone listening who is currently experiencing or
knows someone who's currently experiencing sudden and dramatic vision loss.
What would your message be to them?
S5 (25:55):
Initially, I would say that if you have any problems
with your eyes at all, if you feel like your
eye is shutting down. If you have headaches, forget about
the optician. You need an optometrist or an eye specialist
as quickly as possible. So if it happens, you go
(26:16):
straight to emergency because people have had their sight saved
by doing that. And the eye specialist told me that
that was possible. Get involved in the community. Go back
to the community. I've always been a community person and
now I've got beyond blindness. I've got probers. I walk
with my friends and I really think you've got a
(26:37):
lot positive. There's a lot worse things in the world
than being blind. I can do most things with help,
and I can do most of it on my own.
I can live on my own. The thing I push
for today was taxi fares to get to all my appointments.
If I can get to my appointments, I'm independent. I
will say that I've never found any bus driver or
(27:01):
anyone not willing to help me.
S3 (27:08):
All right. Thank you for an interesting interview. Before we go,
it's time for an announcement. Studio one, of course, will
be coming back next year, but we're changing. We will
always be looking at life from a low vision and
blind point of view, but it's time to spread our
gaze a little further. In 2026, Studio One will be
spreading our gaze out into the disability community in general,
(27:32):
bringing on new guests, new friends, and casting a fresh
lens on the outside world. I hope you join us
for our journey. It should be a blast.
S2 (27:41):
That's a wrap for this week's show. A big thanks
to Annette and Valda for featuring on this week's episode.
S3 (27:46):
And of course, thank you for listening, including our listeners
on the Reading Radio Network and other affiliated networks around Australia.
You can find the podcast of this show that does
include additional material, because sometimes we can't fit everything into
the on air version on Google, Spotify, Apple or your
favorite podcast platform. Next week. How much can you see?
(28:07):
What does it say about the human condition that we
get asked this question on a regular basis?
S2 (28:12):
And indeed, no one can come up with a decent answer.
S3 (28:15):
But between now and then, please do get in touch
with the show. Whether you have experience of any of
the issues covered on this week's episode of Studio One,
or if you think there is something we should be
talking about. You never know. Your story and insight may
help somebody else who is dealing with something similar.
S2 (28:28):
You can email us at studio One at Vision Australia.
That's studio number one at Vision Australia. Or of course,
you can find us on Facebook or Instagram by searching
for VA Radio Network.
S3 (28:42):
Bye for now.
S1 (28:43):
Studio one was produced in the Adelaide studios of Vision
Australia Radio. This show was made possible with the help
of the Community Broadcasting Foundation. Find out more at.
This is Studio One with Sam Rickard and Lizzie Eastham
on Vision Australia radio.
S2 (00:25):
Hi, I'm Lizzie.
S3 (00:26):
And I'm Sam.
S2 (00:27):
And you're listening to studio one. Vision Australia, Radio's weekly
look at life from a blind and low vision point
of view.
S3 (00:33):
This week, once more, we tackle the topic of vision loss.
S2 (00:36):
How can losing sight reshape our identity, relationships, and daily life?
We ask, what adaptations do people make to rebuild and thrive?
S3 (00:46):
As we always say at this point, please do get
in touch with the show. Whether you have experience of
any of the issues covered on this week's episode of
Studio One, or if you think there is something we
should be talking about. You never know. Your story and
insight may help somebody else who is dealing with something similar.
S2 (01:00):
You can contact us via email at Vision Australia. That's
studio number one, Vision Australia. Or of course, you can
drop us a note on our Facebook page by going
to facebook.com Slash VA radio network.
S3 (01:16):
Hello, Lizzie. How goes it?
S2 (01:18):
It is glorious. Glorious. I'm doing very well. Thank you,
Sam and yourself.
S3 (01:22):
Well, I'm moderately annoyed, I've got to say, because there
was this group of shops that were just around the
corner from where we are now, and they were demolishing it.
And every time they demolish a site, whether it be
a commercial site or whatever, I hope for something better
to be built there. So whether it would be like
a fast food place, okay, that's open to temptation, or
(01:43):
at least another shop or something like that. And what
are they built there?
S2 (01:47):
Tell me, I'm sure I don't know.
S3 (01:48):
A car park. The most useless thing for people like ourselves.
It seems to be a very busy car park, so
obviously it's been needed, but my whole sense of anticipation
has now just gone through the floor.
S2 (02:02):
Yeah. Me too. I was quite hoping for a really
nice cafe, you know, somewhere decent to eat, some lunch
that doesn't involve servo pies or a 15 minute hike.
But hey, yeah, burgers can't be choosers.
S3 (02:13):
So you got some some way for people to park
their cars. That's great. All right, so, um, we have
a packed show this week. We've got two amazing guests
who are going to be talking about losing their sight.
Something that we don't really have much experience with ourselves,
because what we've got is what we've always had.
S2 (02:30):
Yes, that's correct. But I have made a lot of
friends over the years, just in my experience of being
blind with people who are losing their vision or have
lost their vision suddenly. And so this topic in particular
touches my heart. And I think it's really important to
address because people tend to catastrophize vision loss. Well, I mean,
we don't, but sighted people tend to think, what would
(02:53):
happen to me? I just couldn't I couldn't handle it.
I couldn't live if, you know, and then they catastrophize
it and then all of a sudden, maybe one day
down the track, they do lose their vision and a
lot of people just lose their heads.
S3 (03:05):
Well, you actually see this with older people as well because,
I mean, vision loss is something that just happens as
a part of old age And yeah, some people think
that their lives are over because they've built their entire
world around being able to see stuff.
S2 (03:19):
Yeah, I get what you're saying. But with Valda, who
is the second guest that we are featuring on today's show,
she lost her sight just one month shy of her
74th birthday, and she has not taken it lying down.
In fact, she has taken the bull by the horns
and now lives a really amazing life.
S3 (03:36):
In the meantime, however, let us talk to Annette.
S4 (03:43):
I was born with poor sight and it had deteriorated
all my life for various genetic reasons, but it absolutely
collapsed and it was a huge shock around menopause, which
apparently is the time for women when genetic conditions will
surface if they haven't already. And I went from about
just over 10% to 2% very, very quickly. Um, no
(04:07):
peripheral vision at all. And at the time I was
a senior executive in the public service. I had no
expectation that that was going to happen to me and, well,
it was devastating initially. I hasten to add that there's
a happy ending to the story, but the initial reaction,
I think, perfectly understandably, was shock and grief and fear.
(04:30):
How am I going to manage my life?
S2 (04:33):
How did you first start to notice these changes in
your vision, and how were you managing your day to
day independence at that time?
S4 (04:40):
I started getting lost and then I started having terrible,
terrible falls. And I guess they were the big warning
signs that something was up. So I actually sought help
before it was confirmed that that I was legally blind.
And then it went from legally blind to not seeing
very much at all very quickly. But I had learnt
to adapt myself just from necessity, which anybody living with
(05:03):
any kind of disability does as best they can. You
have to adapt to suit your circumstances. So, for example,
I was feeling my way along walls, or writing myself
notes about where corners were or where I parked the car.
Having said that, I did give up driving of my
own accord when I just didn't think I could see
well enough anymore. So that's one thing I'm grateful for
(05:26):
that I decided to stop driving rather than having it
imposed on me. I still miss it, and that's probably
one of the biggest losses in inverted commas. That loss
of independence. But also I just enjoyed driving. I still
like fast cars, but lack of vision and fast cars
aren't a good mix.
S2 (05:43):
Can you tell us about some of the aids or
adaptations you found most helpful, and how they made a
difference in your daily life?
S4 (05:51):
One of the first places I approached was what is
now known as See Differently with the RSV. At the time,
it was Royal Society for the blind because they had
a shopfront in the city with practical aids to assist
just getting through daily life, as well as ophthalmologists and optometrists.
So I started with some practical aids, buying them from
there and then seeking more medical help, finding out what
(06:14):
was going on. And that was done not through there,
but other professionals. But they were a fabulous help. So
I've started with things like a headlamp to where if
I was going home in the dark and it was
an LED light so I could see my way around
local streets, and just something as basic as that, and
then things for around the house and then of course,
(06:35):
progress to mobility training and obtaining the international white cane.
And after that, my first guide dog after a lot
of training, of course, and they were the turning points.
I vividly remember the cane and the first time I
used it and a feeling of freedom. But of course
you're still isolated with a cane and it just doesn't
(06:56):
have the psychological support of the dog.
S2 (06:59):
When your family, friends and colleagues began to notice the
rapid deterioration in your vision, what were their reactions?
S4 (07:07):
My family was horrified and shocked like I was when
my vision deteriorated so quickly. It was just a huge
blow to everyone. And similarly friends. I changed workplaces several
times in that time, and a couple of them were very,
very supportive. But the third was quite the reverse. And
(07:28):
in fact, led to me leaving that particular job and
never returning to that work. But it wasn't because of
the colleagues. It was attitudinal barriers, shall we say.
S2 (07:39):
Since losing your vision, you've become involved in several causes
and committees that challenge stereotypes and fight discrimination. What motivated
you to take on this advocacy work?
S4 (07:49):
Just through circumstances. But I think it's more accepting opportunities
and refusing to take discrimination as an option. I just
find it so unacceptable. And I'm in a position where
I've been in a type of employment and had the
education to have the contacts and also the skills to
be able to speak up and use the voice to
(08:10):
stand up against inappropriate attitudes and behavior. And where I
would have been less inclined, although I still used to
always speak up against injustice. So that tendency was always there.
And when I think back, I sort of I've always
rallied against things that I find really unacceptable. And that
has led to meeting the most amazing people from all
(08:33):
walks of life. And through that, being invited to participate
in activities that use the skills I had and learn
new ones. It really is a combination of everything I've
ever learned and workplace I've ever been in. So, for example,
I'm about to start as a panel member assessing applications
for new grants, a new grant round in South Australia,
(08:55):
and that came from other boards and committees and councils
I'm on, where I've assessed applicants for awards and other grants,
and been in the sort of circles where I've learnt
about law and the requirements of these roles, but I
sort of have a broad view or picture of how
people and systems can be inclusive and accessible and kinder
(09:17):
for everyone, not just people living with disability. I feel
really privileged and honored to be given this opportunity to
assess the applications, along with a few other people, because
it's something that really matters to me. The correct and
just awarding of grants is so important and needs to
be transparent, and it's a privilege to be able to
(09:40):
be involved with that. It's also a lot of work,
but nothing good comes from sitting around doing nothing, if
that makes sense.
S2 (09:46):
Now, our listeners may recall an episode at around about
this time last year where we spoke to you and
author Bobby Robinson about a book that you released about
your guide dogs and the way that they have impacted
your journey with vision loss.
S4 (10:04):
It's for everyone. It's a picture book, but it's aimed
at anyone of any age. The story is true and
the paintings are taken from my photos. It's all real
and it's one some human rights awards and it's gone
crazy over in Zambia. It's also been really well received
(10:24):
in the UK and in New Zealand because it's about
human rights, but also that when something goes wrong, it's
good still comes of it. It doesn't have to be terrible.
So I guess it's all about resilience to that. Just
because I can't see doesn't mean I can't do things,
but that some people thought that I couldn't. We know
our abilities or what our hopes and aspirations are. All
(10:47):
of us, no matter how young we are. And it's
up to us to decide what we want to tackle
or face. Not to be told by someone else what
we can't do.
S2 (10:56):
What would be your message to someone who is suffering
from sudden or dramatic vision loss?
S4 (11:01):
Above all, don't give up. I certainly was very depressed
and anxious, and I did wisely, as it turned out,
except the help of a grief counselor from RSV. Then
now it see differently. But always seek some medical assistance
or professional assistance, I should say, and talk through the
feelings because they're natural. Yes, everything is changing and it
(11:22):
will change, but it's not the end. In fact, I've
learned it's just the beginning. The beginning of a whole
wonderful new life of things that in my wildest dreams,
I would never have considered. I've just been overseas learning
to and starting to write the libretto for an opera,
because I decided I wanted to do it. I guess
it points out what's important in life. There's nothing like
(11:45):
losing a faculty or having something taken away to really
make you understand that. Okay, well, this is what I
want to do. And then after this, I'll move on
to something else, probably because I'm like that. And of course,
I'm not positive all the time. But no point being
miserable though, and especially when I do have such a
fabulous life and above all, such fabulous people surrounding me.
(12:07):
That's actually the key. Such wonderful family and friends. It's
really all about the people who lift us up. And
if you don't find your tribe the first place you look.
Keep looking. Certainly don't become isolated. That's the worst possible thing.
So look for where you belong. And people who enrich
(12:27):
your life and aren't always sort of giving you pity.
Because that's the last thing we need. We need to
be just part of the community. In fact, they'll be
really happy when everybody treats anyone with a disability as
just another person.
S3 (12:42):
Okay. Thank you, Annette, for your insights. So, Lizzie, you've
done a bit of research for this episode.
S2 (12:47):
I have, I have. Yes. Firstly because I wanted to
put some resources in the podcast notes for those that
are listening. But yeah, I've found some really good pages,
really good places around that are more national because I
understand every state has their own organisations. But the Save
Sight Institute is part of the Sydney Eye Hospital and
(13:10):
they are training the next generation of optometrists, ophthalmologists, any
eye specialists, and they're currently doing some different clinical trials.
Friend of the show, Lily piccolo, is currently involved. Maybe
she can tell us what that's all about. But, you know,
that thing is about preventing vision loss and saving sight,
I suppose. But also Vision Australia has their own wellbeing
(13:33):
page and it has lots of different resources and points
you towards different places and people that you can call
if you're dealing with vision loss, just based in South Australia,
we have see differently and they currently have a peer
support and counselling phone line up and running. So you
can call this line if you or someone you know
(13:54):
is dealing with vision loss and they will actually put
you in contact with somebody who lives with vision impairment
or has experienced vision loss. I remember being on the
Co-designing committee to create this peer support network, and it
seemed like I had a lot of promise and potential then,
and it's good to see that it's up and running
and doing really well now and well.
S3 (14:15):
I mean, it's something that if you are listening and
you are losing your sight, um, then what you've got
to remember is there's sight loss is one thing, but
also keeping your head together is another, because, well, it
would blow my brain if I lost any more eyesight. So, um.
Just stay. Stay with us. Know that you're not the
only one out there. And it's not the end of
the world either. Anyway, who's our next guest?
S2 (14:37):
Valda.
S5 (14:43):
Yes. Mine was unusual. My condition is caused by artery problems.
And frustrating as it was, I went to the doctor
on April the 21st and she said, go home. You're boring.
Your blood pressure is under control. You have no diabetes,
your cholesterol is fine. You're walking and you're weights. Okay.
(15:06):
And on May the 8th I was in hospital and
had lost my sight and they told me I had
giant cell arteritis, which is giant cell arteritis, and they
remove the artery from the right side of my right eye,
which has completely lost sight because the optic nerve has failed.
(15:28):
I did not have the symptoms of giant cell as such.
If I'd gone to hospital a couple of days earlier,
they would have saved more sight because I spent a
week in hospital on five bags of predisolone one a day,
and came home on 60mg of prednisolone for a week,
50 for a week, 40 for a week, and then
(15:50):
gradually down to nothing after 18 months. But that's what
saved my 10% sight that I have.
S6 (15:56):
So before this rapid deterioration in your vision, you had
full sight. Is that correct?
S5 (16:02):
I had full sight with glasses and I'd been assured
by my optician that I didn't have glaucoma, and cataracts
were probably eight years away. My right eye had been
shutting about 1030 at night. This was from about the April,
but I'd been reading a 500 page book and I thought,
I'm tired, I go to bed. And then one of
(16:23):
the opticians said, you've got dry eyes here, have some
ointment for dry eyes. So when I had this episode
on the Saturday up at the shopping centre, when I
lost my sight for maybe 15 minutes, I waited. I
drove home the Sunday, drove to my daughter's, caught the bus,
went to football, came home from the football. No problems
at all. On the Monday morning I thought, okay, I'll
(16:46):
go to another optician and see what they say. And
the comment was six out of six with glasses. So
I went up to uni three a and I was
sitting in my Italian class and all of a sudden
my left eye had a flash. Came back after about
a couple of minutes. I drove home. That was the
last day I drove my car. Thursday I went to
(17:08):
see my grandson and I think that's when the right
eye went on the Friday I went to the doctor
and he sort of ignored me. I said, I need
an eye specialist. I rang up the eye specialist. They said,
three months. I said, I cannot wait three months. And
on the Saturday my girlfriend had encouraged me to go
over to the chemist and she sent me back to
my original optician. He examined my head behind the eyes
(17:30):
and said, you've got something drastically wrong. And by the
time I got to Adelaide Hospital, the eye specialist was
ringing and she oversaw the treatment I had.
S6 (17:40):
So paint us a picture of what your life was
like before you suddenly lost your sight.
S5 (17:45):
I was very active. I lost my sight at just
one month short of 74. I had worked until I
was 70. I spent 37 years in the country teaching
primary school students, coaching sport, involved in lions and the
yacht club and the church and. yet I coached a
(18:07):
grade level team before I came to Adelaide. And when
I came to Adelaide, I continued my involvement with Lions
and I was a zone chairman, a region chairman, and
then I was secretary of the Lions Club for two years.
And just before I lost my sight, I was assistant
treasurer on the computer. But when I lost my sight,
I was told, bad luck. You're a Caucasian woman over
(18:29):
the age of 50. This is not hereditary. However, in
amongst my treatment, when I had a Cat scan, they
found out that yes, I did have a stroke in
2000 and I have got a blockage in the left
stem of my brain. So now I am under a
heart specialist and eye specialist and a rheumatologist because my
(18:53):
illness is an autoimmune disease.
S6 (18:55):
Given that your life had been so rich and full
and active before you lost your sight, can you talk
us through some of the emotions that you went through
when this originally all started happening?
S5 (19:07):
I was devastated, absolutely devastated because I retired end of 219.
Covid hit. You know, I've only had a couple of
years of free life going U-3a, going to Probus and
mixing with friends. And yes, I was upset and then
I became a burden on my daughter, who is an
extremely busy lady. Besides her work, she has three teenage
(19:31):
children and they decided to let me go home. And
so there I was, home at my daughters, and I
was so frustrated because I couldn't read and I couldn't
use my phone. I was sinking into the ocean, basically.
But my daughter, with her experience, managed to get into care.
And the best thing that happened was that I got
(19:52):
a counsellor who understood and she said, yes, you've got
to go home. So July the 4th, I came home
and I had support. And when I look back, I've
had fantastic support from family and friends. I don't know
whether that's because I was a sighted person, but it
(20:13):
really shocked my friends. Absolutely, because I'd been so fit
and healthy.
S6 (20:20):
You touched on the amazing support of family and friends.
What are the sorts of support did you receive at
this time?
S5 (20:28):
The best support I had was a very, very skilled
counsellor psychologist from PHE differently and I went to a
group session with her. She did the two individual ones
with me and then she did a group therapy. And
I also had a care plan with the support of
a psychologist, which enabled me to go back to some strategies,
(20:50):
but also around the same time I applied to Beyond
Blindness and they gave me half the money towards a iPad,
and my friends put books on the phone on the
iPad for me. I can add 22 books on my
iPad and I'm now back to reading. As such, I
hated it to begin with, but I couldn't read for myself.
(21:11):
But I have now got used to it, and I
have two extremely good friends that worked with me. One
comes and walks with me every Tuesday, picked me up.
We go for a walk, discuss books and whatever the
other girlfriend. That really helps me, picks me up for progress,
and then she picks me up for our fortnightly walk
with the other girls from Probus. So those five people
(21:35):
have been my support network outside of any government support.
I was originally put on level two, which I fought against.
So before I finished with the OT on the Commonwealth
Home Support, I said to her, I want you to
do an assessment of my sight. I said, send it
to my provider. I then had a phone call from
(21:58):
Aged Care and they said they'd do a phone interview
in February. I did not get level three. Finally, in
the November I my daughter pushed a bit more and
my provider pushed a bit more. And I had a
phone call from this woman who said, okay, Val, I
used to be a nurse and my father's blind. And
(22:19):
she said, how do you feel? Etc. I said, I
want some help to be able to read and I
want some help generally, you know, to get back. And
she said, within three days I'll have the report written
and you'll get level three within 1 to 3 weeks.
I had level 3 in 1 week. Meanwhile, before I'd
(22:39):
lost my sight, I had booked a trip to Kangaroo
Island and I had to ring up Phil Hoffman and
cancel it. And the girl said, you know, Beyond Blindness
has just been to Kangaroo Island on a trip. And
so from that, my daughter then contacted me on blindness.
And two things happened with that because I started walking
(22:59):
with the group, I'd only got exercise, but thought. I
learned of other people's blindness, and I also was able
to connect socially. And in that connection, twice a week
has been very, very significant for me. And I've been
to the travel club, which means it got me out
(23:20):
of the house. So I'm back to being active again.
My shopping lady is absolutely fantastic. She picks me up
from hydro once a week. My cleaning lady is also fantastic.
She comes once a fortnight and I have finally got
the reading machine I want after the first six months.
(23:41):
I accepted my blindness and said, well, there's plenty of
people worse off in life and I've got the support
of all these friends.
S2 (23:50):
What are some of the adaptive technologies and accessible apps
that help you most in your day to day life?
S5 (23:56):
The little soft stickers that you put your fingers on
that's enabled me to use my microwave. I don't need
adaption for that. I use my microwave, my air fryer, uh,
my kettle. I can see enough do it on the sink.
But that CCTV enabled me to read my stock powder
and that sort of thing. The phone has been my
(24:20):
lifeline because once I have got the contacts in my phone,
I can then send messages and I can ring people
and I can get my emails on the phone. I
have got freedom. Topaz. It's cool. You can change colors,
you can change sizes and you can focus it. And
if you still can't read it, press a screen and
(24:42):
therefore you can have it printed and it will read
it to you. And even if I want to, I
can say that on the file. So that has given
me the opportunity to write things and see that little
bit better. And now I am pushing for the glasses
because I can catch the bus into the city, But
then I cannot read the name of the shops, etc.
(25:06):
and these meta glasses will enable me to do that.
They will also enable me to go out in my
garden and say, is this green or is this brown?
That sort of thing. I didn't claim them as glasses.
They are adaptive technology. And also I've had transition glass
put in. They're not lenses. I've also got hearing aids.
(25:28):
And I was given this clue that if you're blind
and deaf, you can get free hearing aids from the government.
And initially I spent money because I didn't know that.
But now I have upgraded to much better hearing aids.
And those hearing aids go straight into my phone.
S2 (25:45):
If there is anyone listening who is currently experiencing or
knows someone who's currently experiencing sudden and dramatic vision loss.
What would your message be to them?
S5 (25:55):
Initially, I would say that if you have any problems
with your eyes at all, if you feel like your
eye is shutting down. If you have headaches, forget about
the optician. You need an optometrist or an eye specialist
as quickly as possible. So if it happens, you go
(26:16):
straight to emergency because people have had their sight saved
by doing that. And the eye specialist told me that
that was possible. Get involved in the community. Go back
to the community. I've always been a community person and
now I've got beyond blindness. I've got probers. I walk
with my friends and I really think you've got a
(26:37):
lot positive. There's a lot worse things in the world
than being blind. I can do most things with help,
and I can do most of it on my own.
I can live on my own. The thing I push
for today was taxi fares to get to all my appointments.
If I can get to my appointments, I'm independent. I
will say that I've never found any bus driver or
(27:01):
anyone not willing to help me.
S3 (27:08):
All right. Thank you for an interesting interview. Before we go,
it's time for an announcement. Studio one, of course, will
be coming back next year, but we're changing. We will
always be looking at life from a low vision and
blind point of view, but it's time to spread our
gaze a little further. In 2026, Studio One will be
spreading our gaze out into the disability community in general,
(27:32):
bringing on new guests, new friends, and casting a fresh
lens on the outside world. I hope you join us
for our journey. It should be a blast.
S2 (27:41):
That's a wrap for this week's show. A big thanks
to Annette and Valda for featuring on this week's episode.
S3 (27:46):
And of course, thank you for listening, including our listeners
on the Reading Radio Network and other affiliated networks around Australia.
You can find the podcast of this show that does
include additional material, because sometimes we can't fit everything into
the on air version on Google, Spotify, Apple or your
favorite podcast platform. Next week. How much can you see?
(28:07):
What does it say about the human condition that we
get asked this question on a regular basis?
S2 (28:12):
And indeed, no one can come up with a decent answer.
S3 (28:15):
But between now and then, please do get in touch
with the show. Whether you have experience of any of
the issues covered on this week's episode of Studio One,
or if you think there is something we should be
talking about. You never know. Your story and insight may
help somebody else who is dealing with something similar.
S2 (28:28):
You can email us at studio One at Vision Australia.
That's studio number one at Vision Australia. Or of course,
you can find us on Facebook or Instagram by searching
for VA Radio Network.
S3 (28:42):
Bye for now.
S1 (28:43):
Studio one was produced in the Adelaide studios of Vision
Australia Radio. This show was made possible with the help
of the Community Broadcasting Foundation. Find out more at.
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