Deena's Story.

Deena is a mother to a five-year-old, wife and has a career as an advisor for the state government. She is also blind. Listen to her experiences of living with vision loss and what supports were a ‘game changer’ in her life. 

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Episode Transcript

S1 (00:05):
You feel like every door's been shot in your face
because of your vision impairment, and you're just angry about
that and you just feel like giving up.

S2 (00:16):
The onset of vision loss can be frightening, devastating and
is definitely life changing. Dana is a parent and living
with severe vision loss in her own time. She accessed
a range of services that enabled her to still do
the things she enjoyed before losing her vision. This is

(00:36):
her story.

S3 (00:44):
I understand that you've had a vision impairment since birth.
What was the nature of that vision impairment?

S1 (00:51):
I was born with congenital glaucoma and diagnosed doctor about
six weeks. And that has carried through with me through
my childhood and into my adulthood. A big fog is
in front of me, so I can see light and dark,
so I can tell when the sun shining down or

(01:12):
when I'm in the shade and in my left eye,
it's pretty much black. I did have some usable. I
saw it, which means I could get around quite freely
without a cane. It just has deteriorated in the last
three or three years. I am a mother of one

(01:33):
five year old daughter. I'm a wife to a husband, Thomas,
who is also blind and I'm also a professional. So
I work in the Victorian state government.

S3 (01:47):
So, well, how old are you now?

S1 (01:49):
I'm 34, and I left my site after high school,
I lost sight in my left eye. So when I
was in high school, I was in big denial about
my vision loss. I still had enough vision to be
able to walk around with no cane, and my books

(02:09):
would just enlarge to three side, so everything was relatively straightforward. However,
I was in big denial because I would push away
systems like I had an opportunity to have an aid,
an integration aid with me, and I was embarrassed about

(02:30):
that having someone sit next to me in class, especially
during the teenage years. You don't want to look different and.
You want to assimilate as much as possible, so I
would often feel quite embarrassed about what you're enjoying my

(02:51):
time in high school, I had a lot of supportive
friends around me. I didn't experience bullying or anything like that,
but I just didn't want to look different. I didn't
want to use the laptop. I was happy to use
a pen and paper, but I really struggled with that
because I. Whenever I would write up an essay, I

(03:14):
would write on lined paper, and if I read off
the line, I would scrunch it up and have to
start all over again. And I did this over and
over again every night doing my homework because I couldn't
get it straight on the line get. I refuse to
use the laptop, which would have been so much easier,

(03:35):
but I couldn't acknowledge it. I feel like having low vision,
you do go through the stages of grieving, but it
happened so gradually throughout different periods of your life. For example,
when you're to school, you microwave through denial. When you're
trying to get a job, you know you might go

(03:58):
through a build of anger because you're trying to get employment.
You feel like every door's being shot it in your
face because of your vision impairment, and you're just angry
about that and you just feel like giving up in. Yeah.
And then I thought, OK, it's time to use the cane.
And that was a big identity shift, because when people

(04:20):
see you using a cane, they automatically see a blind woman.
And that was really difficult for me mentally to prepare
for that. And then I lost the remainder of my
right eye. I had done a lot of preparation beforehand.
I always had it on my shoulders that I was
going to lose my sight completely. So I did a

(04:42):
lot of training with adaptive software and screen rated programs
because one of my fears was How would I do
my job if I can't see? Because I relied on
my vision so much with magnification software and having that
weigh on me, I thought, You know what? I'm going

(05:03):
to prepare for this. So I did reach out to
services about getting training on adaptive technology, which was the
best thing I really did. I could still do my
job independently because I had that training of using screen weight,
the software under my belt.

S3 (05:25):
The onset of losing your sight is quite it creeps
up on you. You don't necessarily notice it with your
sudden or was it did it creep up on you?

S1 (05:38):
Yeah, that's true. It does in a lot of situations,
creeps up on you and you don't really notice until
you're experiencing physical symptoms like headaches, eye strain, even just
magnifying the computer screen to a bigger magnification and then realizing, Oh,

(05:59):
I used to be able to read things that were
times three magnification. Now I put it up two times six,
and it is a slow progression. And even just for
mobility issues like walking around the street, you do gradually
notice and it is a real reflective thing because you

(06:20):
think back to what you could see and now suddenly
you can't. Preparing for it was a really useful thing,
particularly once I lost the completely, I thought I could
harness those.

S3 (06:37):
Your positivity is quite humbling and yeah, you've done well
to prepare for it and to turn it around. But
we all have days where we have a little cry
in the shower, don't we?

S1 (06:49):
Yeah, definitely. So, yeah, it is a grieving process, and yeah,
I'm out on the other side of it. Don't get
me wrong, I still do have my down day. For example,
I have a five year old and she does a
lot of drawings. She really likes doing drawings, and I
really wish that I could see her little drawings because

(07:12):
I've been told she doesn't really detailed, and I miss
the fact that I can't see her little drawings or
see her write her name.

S3 (07:22):
I feel your pain. I've got two kids as well,
and they both have eyesight conditions and. Yeah. Oh, you've
got me there. So a lot of people who are
listening to this may have lost their sight, perhaps a
little later than life than you, and some of them

(07:46):
will find that whole idea of connection via social media
to be quite daunting. Do you think there's any advice
you can give us that any way you can get help?

S1 (07:59):
I think you can take it in a step by
step approach and don't look too far ahead and don't
try and do too much at once. The first thing
that I've done is to reach out to a low
vision service such as Vision Australia. And forced out some

(08:19):
professional assistance because of these services have facilities where they
can give you I.T. training, they can refer you to
other services, such as counselling.

S3 (08:33):
So you mentioned counselling services. Is there help out there
for people who may feel they want it, or maybe
a bit

S1 (08:41):
frightened of it? Yeah. So they are informal counselling services.
I did a peer support group who Vision Australia's tele
link services, and that wasn't a formal counselling session. But
even just being able to connect to like minded people,

(09:02):
I found really comforting. And I always left the coal
every week feeling that bit more empowered and less alone.

S3 (09:14):
So if somebody said to you, I don't really like
the sound of all that, talking to other people about
my emotions or hearing other people whine on, you know,
I'm dealing with losing my sight. What would you advise them?

S1 (09:30):
Well, they do have one on one peace support program
like Honor Vision Australia has one, and that was good
for people who were a bit anxious about speaking with
people about their vision impairment.

S3 (09:47):
And what other types of support did you go out
and seek?

S1 (09:50):
I contacted Guide Dogs Victoria to get some orientation and
mobility regarding how to use the cane and how to
navigate my surrounding street. So that service was very helpful.

S3 (10:07):
Orientation and mobility. It sounds rather scary and inhuman. How
would you define orientation and mobility?

S1 (10:17):
Orientation and mobility basically means the way that you navigate
the street through walking, public transport, taxis, the newbies. An
orientation is about your surroundings, like being orientated in a
certain area. For example, I received orientation to get to

(10:42):
work from my house, so it's from the front door
to your office door. How am I going to get
from A to B.? What straights do I have to cross?
What landmarks should I be aware of while doing it
in a safe way?

S3 (11:00):
When you say landmarks, you can be aware if you
know you can't see anything, how are you going to
spot landmarks?

S1 (11:05):
When you use a cane, you can feel things with
the end of the cane. I've been a client of
the NDIS, and it had been an absolute game changer
for both me and my husband. So we receive services
to access the community. We have a support worker who

(11:26):
will come once a week and will do different activities
like take my daughter to the park, take her to
the beach or my support worker will come with me clothes,
shopping or supermarket shopping. And it just made me feel
so much more independent. I don't have to rely on
my mom. My mom only helps me out in terms

(11:48):
of my daughter. She doesn't do any more than a
normal grandmother with her grandchild. I've had support with going
to doctors appointments and organising my paperwork. Other services that
I've access to is the empty travel card, so that's
been good to get from A to B. Only have

(12:10):
to pay half price taxis and now rebates, as well
as my transport card, which means I get free public
transport on trams, trains, buses. This is in the state
of Victoria. So one adaptive technology piece of equipment can

(12:31):
this is so simple, it's simply sticky dot and sticky
dock you can use on a keyboard so you stick
them on specific numbers, for example, and that helps me
navigate the keyboard very quickly. I also use these dots
for my microwave, for my washing machine, and these buttons
come in different shapes, which you can pick up at

(12:53):
your Vision Australia shop. I'm an adaptive technology that I've used.
I use an iPhone for so many things. So the
iPhone has an in-built screen reader program, which basically means
you don't need to buy any additional software to use

(13:15):
an iPhone so you could pick up any iPhone. Go
to Settings Accessibility, turn on voiceover and then you can
use your phone with the voiceover command, which is so
simple and very intuitive. I use my iPhone to do
all my banking, pay bills, send emails. I listen to podcasts,

(13:40):
e-books through Audible through the iPhone. It has been a
game changer in terms of adaptive software.

S3 (13:51):
Imagine somebody. Sitting there, perhaps not as young as you
or I are, suddenly they're faced with the specter of
sight loss that you've faced as well. What would be
the one piece of advice that you would give them

S1 (14:07):
the one piece of advice I would give someone who's
recently struggling with vision loss? Would be do your own
research online, sometimes when you get a lot of information,
it can be overwhelming. And you just feel like not
that throw your hands up in the air. I would

(14:30):
reach out to a service who specializes in low vision
because you can be assigned a case manager so you
can have a person that you can always reach out to.
And the case manager can refer you to other services
such as the Kelly Link, such as one on one
support or training in technology. And also, there's no time

(14:53):
line you don't need to do everything at once. And
I also want to talk about parents who have children
with a low vision. I know when I was born
and diagnosed with my vision loss, my parents were whispered
to Vision Australia from the Royal Children's Hospital. And this

(15:15):
was back in the eighties and they educated themselves on
entitlements for me because it can be a big thing
for parents as well. You know, your child can succeed,
can get a fulfilling job and career. There's no reason
why they can't, especially nowadays with the way that technology is,
and it's only getting better. So just one step at

(15:38):
a time.

S2 (15:43):
If you or a loved one are experiencing vision loss
and would like to know about the range of options
on offer to you, please call one 800 eight four
seven four six six or visit Vision Australia dot org.