Let’s Talk about vision loss (accessible guide to series)

Australia's blind and low vision community share their stories about vision loss

See omnystudio.com/listener for privacy information.

Episode Transcript

S1 (00:00):
Let's talk about vision loss, real stories. Acknowledgements Vision Australia
gratefully acknowledges Amy Benn, Brenda, Brittany, Cheryl, Dina, Paul and Tony,
who shared their very personal stories of blindness or low
vision to help others facing similar experiences. To the many

(00:21):
people with lived experience of blindness or low vision who
offered their expertise. Thank you for bringing this project to life. Finally,
we would like to acknowledge the Department of Social Services
information linkages and Capacity Building grant. As without this government support,
this book and audio series would not have been possible.
Vision Australia blindness, low vision opportunity. This book is dedicated

(00:48):
to the people who are new to vision loss and
to those who are supporting someone going through this life transition.
When you're ready, we're here for you. Vision loss can
be life changing. You might be wondering what's next. You
might be wondering how you'll keep doing the things you love.
You might be wondering how your family and friends will
react to your news. Listen to the stories of others

(01:11):
living with vision conditions when they were ready. They connected
with various supports that helped them to continue doing the
things they've always done, such as reading, travelling, working and
much more. If you or someone you love is experiencing
vision loss, read and listen to the stories in this
booklet and ask us about the services, government benefits and
other support that you can access. Meet Paul, still building

(01:36):
hot rods and barbecuing. I was sitting in my office
at work, am I right, Retina detached. It was like
someone just pulled a blind across my eye. After living
for 53 years with reasonable vision, Paul experienced severe vision
loss over just a few hours and 18 months later. Blindness.

(01:56):
All of a sudden, the whole world, as I had known,
it changed. He said, I didn't really know who I
was or what I could offer anyone. I even considered
not being here. What didn't change was Paul's grit that
helped him to rebuild his life. He's relearned how to
build hot rods and still works as an engineer. There
aren't many things I can't do these days. I can

(02:18):
still use a barbecue. After getting help from an occupational therapist,
there's such a wealth of knowledge out there that can
help you to do anything you want, he said. Listen
to Paul's full story at Vision Australia dot org forward
slash LTE Avielle forward slash pull highlights include the impact

(02:38):
on his marriage and how sharing his feelings changed his
outlook on life.

S2 (02:44):
Meet Britney, business owner and optimist, an UP-AND-COMING hairdresser, Britney
was looking forward to a long and successful career when
she lost her vision. I kept thinking I hadn't opened
my eyes and I kept turning the light switch on
and off, wondering what was going on, she said. Diagnosed
with diabetic retinopathy and macular degeneration, she felt the immediate

(03:06):
consequences of this life changing moment. My boss told me
there's no point coming back, she said. That was probably
the time when I locked myself in the house for
about a week. Also, I had lots of friends through
playing netball, so because I couldn't play anymore, I started
attending games, but they stopped inviting me out. Eventually, Brittany
experienced a key turning point when she shared her feelings

(03:28):
with others going through similar experiences. From that time, she
not only felt better, but it also gave her a
new perspective about life after vision loss. This has resulted
in lots of good things happening to Britney. Since then,
she's launched a consulting business, discovered new joys and relearned
how to do many things she used to do before
losing her vision. With time, you can be content with

(03:51):
losing your vision. I'm happy with how I perceive myself
and how I have gotten on with life. Listen to
Britney's full story at Vision Australia dot org forward slash
l t a the L. Forward Slash Britney and that
name is spelt b r i t t n double a.

(04:12):
Highlights include how illicit drugs affected Britney's vision and what
her new and fulfilling career looks like.

S1 (04:20):
Mate Ben, science whiz and uni student. Diagnosed with retinitis
pigmentosa at the age of eight, Ben is about to
embark on a career as a genetic counsellor. When I
started to lose my vision as a kid, it was
just when I was really getting into reading books, he said.
It was quite a devastating time to lose something that
I was just getting into and loving. However, the challenges

(04:43):
he's faced have led to growth, and he said speaking
up about his needs has been fundamental to that growth
throughout his life at university. His technology skills have helped
him immensely because he's been able to successfully do all
of the required work while continuing to enjoy reading and
whenever he feels a little nervous about his budding career.
He reminds himself that having low vision gives him an

(05:05):
advantage over his peers. You'll have to listen to his
story to find out why. Listen to Ben's full story
at Vision Australia dot org forward slash LTE Avielle forward
slash ben. Highlights include why having low vision gives him
an advantage over his peers and managing tough days.

S2 (05:27):
Meet Dina, government adviser and mother. You don't need to
do everything at once, small and steady wins the race
is Dina's advice to anyone facing blindness or low vision
as an adviser for the state government and mother to
her five year old. She's used to offering advice. She
is also blind. Born with congenital glaucoma, she can tell

(05:48):
when the sun is out and when she's in shade,
but very little else. During school, I was in big denial.
I would push away and refuse things like having an
integration aid, she said. I was embarrassed and didn't want
to look different. Her attitude to living with an eye
condition has significantly changed over the years. I'm part of
the NDIS and it's been an absolute game changer for

(06:10):
both me and my husband. I don't rely on my
mum anymore than sighted people do. She doesn't do any
more than a typical grandmother would do her final words
of advice. Just take one step at a time and
be open to support. Listen to Dina's full story at
Vision Australia dot org forward slash l Avielle forward slash

(06:33):
DNA spelt DWC in a highlights include parenting without vision
and how she makes the most of her iPhone. Meet Cheryl.
Artist and traveler. All her life, Cheryl had been conscious
of her eye health. My mom had an eye condition,
so it was very likely that I would get it.

(06:55):
And when Cheryl was 60, the eye specialist confirmed what
she had always suspected. The doctor told me that I
should prepare for what would be significant vision impairment by
the time I was 70, she said. While the retired
nurse was able to accept her vision loss, she refused
to give up her independence. The saddest day was when
I had to hand over my driver's license. I was

(07:16):
about 40 when I got my license, so I had
really treasured it. But that hasn't stopped her. While most
retirees are slowing down, Cheryl is still traveling to all
the places that matter to her, as well as pursuing
her passion for art and doing much more. Her advice
to anyone going through vision loss is what got her
through the tough times. Whatever you do, just don't give

(07:38):
up and don't stop doing the things you like. Listen
to Cheryl's full story at Vision Australia dot org forward
slash LTE Avielle forward slash Cheryl. Highlights include tips on
staying independent and her favourite equipment around the home.

S1 (07:56):
Meet Tony, Celebrity chef and teacher. Imagine the foxtail network
calling you and asking you to star in a cooking
series and imagine that you're so good. You star in
four thousand live shows across 100 television networks. Welcome to
Tony's career as a celebrity chef. I was cooking up
a storm on stage, I was tossing pots and pans

(08:18):
around and cooking things in 30 seconds. He said. But
while he was taking a break from his hectic career,
Tony noticed his vision wasn't quite right as the eyesight deteriorated.
It looked like cooking was virtually impossible. I lost my
confidence in the kitchen. I was burning things, he said.
It took some time for Tony to regain his confidence

(08:38):
in the kitchen. And that's understandable considering kitchens can be
dangerous for anyone, let alone someone who is blind. Yet
Tony has come so far thanks to the right services
and training. He's still cooking perfect meals from his collection
of 500 recipes, and now he's helping others with vision
conditions cook up their own wonderful creations in the kitchen.

(08:59):
I discovered a new way of cooking, said Tony. There's
nothing we can't do. Listen to Tony's full story at
Vision Australia dot org forward slash LTE Avielle forward slash
Tony highlights include tips in the kitchen and accessing the
right services.

S2 (09:20):
Meet Brenda, pianist and volunteer. Brenda is something else. At
91 years of age, she's a disability advocate, volunteer and
founder of a much loved lawn bowls group. What's more,
all of these achievements came after she lost her vision,
which at the time seemed to be devastating. The ophthalmologist
looked at my eyes and shook his head and said,

(09:42):
You're in very grave trouble. It all happened so fast.
It almost seemed surreal, she said. One of the worst
things was that I couldn't read music anymore. I'd always
played the piano. It was a huge part of my
life with the right support. Brenda has overcome even that
difficulty and continues to play the piano. With time, the

(10:03):
sadness of losing her vision became determination to make the
most out of life. This change set off a chain
reaction that has seen Brenda say yes to many opportunities.
You only have one life to live. You must stay
in touch with the world, the community. I learnt I
had to do things differently. Listen to Brenda's full story
at Vision Australia dot org forward slash LTE Avielle forward

(10:27):
slash Brenda. Highlights include how she still plays the piano
and her favourite services and supports. Meet Amy, mother and advocate,
the maternal health nurse looked straight at Amy and said,
Are you ready for this? When Amy's son, Parker was
just four months old, he was diagnosed with X-linked juvenile

(10:48):
retinal squeezes and nystagmus. It can take time to adjust
to life changing news, and it was no different for
Amy and her husband, Glenn. When we found out, I
thought I didn't want a blind child, she said. Yet
Amy is the first to admit that accepting the situation
and getting the right supports for Parker and her family
changed everything. The Vision Australia team saved our marriage. They

(11:10):
are the most invaluable people to have in your life today.
Parker is thriving and doing what every independent child does
best playing, making friends and ignoring mom when it's time
to brush his teeth. Parker is being set up to
be independent, and for him that means using a white
cane to get around and learning braille. As Parker grows up,

(11:31):
the services he receives will adjust to suit his goals
and interests. He's a brilliant young man, said Amy. And
more than anything, I'm proud of the fact that he's blind.
Listen to Amy's full story at Vision Australia dot org
forward slash travel forward slash Amy highlights include how Amy
responds to negative feedback and the government benefits available for carers.

S1 (11:56):
What's next when you're ready? You can find out about
the government benefits and many services that you can access
as a leading national provider of blindness and low vision services.
Vision Australia supports people of all ages who are blind
or have low vision to help them live the life
they choose. We can help you find answers to questions
you may have. Contact us on one 300 eight four

(12:20):
seven four six or email info at Vision Australia dot org.
Find out about government benefits you might be eligible for.
You might be entitled to government funding that will help
cover the costs of some services, for example, disability support pension,
blind blind age pension for people over 65 years. National

(12:42):
Disability Insurance Scheme NDIS for people under 65 years. My
aged care for people over 65 years. National companion card
There are also some state and territory based government subsidies
to help cover the cost of public transport. There are
many different types of support on offer talk with others

(13:02):
going through similar experiences, emotional support groups are an ideal
way to share what's on your mind and hear other
people's stories. They offer social, emotional and practical support and
operate in a confidential, safe and casual setting. Life changing
and easy to use technology using technology might feel daunting.

(13:23):
We promise it's easier than you could imagine to continue
to use the internet. Read emails. Use your mobile phone
and much more. And you can keep reading the daily
newspaper and your favorite books via audio through the Vision
Australia Library. A safe home the way you want it.
Qualified occupational therapists can suggest changes in your home that

(13:45):
will allow you to continue using every space safely. They
can show you tips such as using tactile features on
kitchen equipment, ways to reach your front door, adding color
contrast to fine cups easily and organizing wardrobes and cupboards.
They can also help you to maximize the use of
your remaining vision. Safe and independent travel with the right support.

(14:08):
You can learn to get out and about safely, whether
by using public transport or equipment like a white cane.
Mobility specialists can help you continue to go to all
the places that matter. Get in touch if you have
any questions, please contact Vision Australia. Phone one 300 eight
four seven four Double six Monday to Friday, 8:30 a.m.

(14:30):
to five p.m. EST. Fax one 300 eight four seven
three two nine Email info at Vision Australia dot org website.
Vision Australia dot org. Facebook Vision Australia. Instagram at Vision Australia.
Twitter at Vision Australia. Vision Australia acknowledges Aboriginal and Torres

(14:54):
Strait Islander people as the first Australians and traditional owners
of the land across our working area. We pay our
respects to elders both past and present. Vision Australia blindness,
low vision opportunity. This is the end of let's talk
about vision loss, real stories. This recording was produced by

(15:16):
the Vision Australia Information Library Service in December 2021, narrated
by Robert de Grau and Sally Turnbull. This concludes the recording.