Ben's Story.

When Ben was eight years old, he was just getting into read when he started losing his vision. It was a devastating moment when he had to stop something he loved. Ben has come far since that moment. This is his story of living with an eye condition.

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Episode Transcript

S1 (00:03):
There are days when I think, all right, well, then
why would someone choose me for a position when they're
are my peers who have the exact same skills? Yes.
I have low vision, but in a way that lived
experience gives me an advantage.

S2 (00:25):
The onset of vision was no longer being able to
see properly, if at all can be frightening, devastating and
certainly is life changing. But in time, not all that
many can tell of the turnaround. One such person is
Ben Page. Ben can tell us his story of the

(00:47):
lived experience of this life transition. Ben, you've lived with
vision loss for most of your life. Tell us that story.

S1 (00:56):
I guess it started with my older brother. He, I think,
started having some trouble at school. And so when they
did some investigation to try and work out what was
going on, they looked at his eyes and found that, well,
he couldn't see what was going on. And at the
time when they examined him, they also looked at me
and they looked at my eyes and went. It's all good.

(01:18):
Don't worry about it. His eyes look fine. Then when
I turned eight a couple of years later, the exact
same thing happened to my eyes, where it was quite
a rapid decline in vision. They couldn't put a name
to the condition other than sort of an umbrella term
of a cone rod dystrophy. So a bit like retinitis

(01:40):
pigmentosa or Stargardt's disease or macular dystrophy. The areas in
which I lost vision were sort of all over the
sort of the visual field. So I lost a lot
of vision from the center, which really impacted on my
ability to write and read and also to do anything
like ball sports. But then I also lost vision from

(02:03):
sort of the mid periphery.

S2 (02:05):
So tell us about school already from about eight onwards.
You were a kid who had to be treated a
little bit differently. Get a little bit of special help.
How did you feel about it and what difference did
it make?

S1 (02:17):
All through school, I would have an integration aide who
would sit with me and help me fill out maths,
question sheets or scribe for me. I think I found
that the most easy way to to work would be
to dictate what I was going to want written down
and have them write that down. It wasn't always great

(02:39):
because when you're 14 and in a math class where
you do not want to pay attention and you've got
an adult sitting next to you, you're away from your friends,
you've got someone keeping you on task. While it's great
because it keeps you working and you can't slack off. Yeah,
I think when you're 14, that's kind of all you

(03:00):
want to do.

S2 (03:01):
So but Ben's a bit special. He does things a
bit differently. Is it the way your mates might have
perceived it had you get on with them?

S1 (03:09):
I think like any group of friends, I was always
sort of ups and downs, but overall they were really
supportive and I think they didn't see me as the
blind kid or the kid with low vision. You know,
I was able to really make some solid connections just
using my other interpersonal skills. Yes, because I think that's
definitely something I've sort of thought about over the years

(03:32):
is that, you know, you don't need to be able
to really see to make a connection with someone. Mm-Hmm.

S2 (03:38):
You went through secondary school and you must have gone alright, right?
Because you went on to uni. Tell us about that.

S1 (03:43):
And I always had a huge passion for science. I
think biology and chemistry were always my favorite subjects at school,
so I went on to University of Melbourne to do
a Bachelor of Science. I think it was kind of
a scary transition because I was going from the high
school scenario where I had an integration aide sitting with

(04:05):
me constantly to having teachers keeping track of what I'm doing.
And if I have anything overdue to the university environment,
which is a lot more self-directed and you're expected to
be a lot more independent,

S2 (04:19):
so I guess you had to be able to speak
up for yourself more. What we often refer to as
self-advocacy skills would need to have been developed.

S1 (04:29):
Yeah, absolutely. I think that was sort of key to me.
Doing well at uni was being able to talk with
the teaching staff and the subject heads to staff. I guess,
first of all, introduce myself and they were always so
supportive and so eager to make things work for me.

S2 (04:51):
How did you feel? You were fitting in with the
university life?

S1 (04:56):
I think the biggest social thing I had was through
the university. Part of their support they could offer would
be academic support workers. These were people who were trained
up by the Unis disability department to do things like
take notes in lectures and sit in with you on
tutorials in case you needed any assistance rather than than

(05:18):
being integration aides. These were always students who were working
for the university. They were there to support me, but
in a weird kind of way, they were also like
a university assigned friend. One of the things the university
offered was I could have assisted study time. So taking

(05:38):
these academic support workers and going to a library and
then working with me to do whatever I needed to
get done, if it was ratings, they would read to me.
But because I got along, so. Well, with them, it
was kind of just like hanging out with a friend.

S2 (05:53):
So what do you do these days? You still studying?

S1 (05:56):
Yep, sir. I finished my undergraduate degree in genetics. I
am now doing a masters in genetic counseling through that course.
I sort of realized that while I love genetics and
the concepts of it practically doing all the experiments and things,
that wasn't really for me, I guess, because partly I

(06:19):
didn't really enjoy them. But then also with my vision,
it was very difficult to perform those tasks.

S2 (06:27):
We all have damn time as well as good time uptime,
those down days that you have. How do you deal
with that?

S1 (06:36):
Yeah, it can be hard sometimes. While I would say
in some ways, I've come to terms a lot with
having low vision, it's still days when I really feel
the impact of it a lot more, particularly when thinking
about studying or my career prospects. You know, while I'm
good at it and I have all the skills. There

(06:58):
are days when I think, All right, well, then why
would someone choose me for a position when they are
my peers who have the exact same skills, but they
can go and file a document where it needs to go?
So I think when I start to feel down, it's
really that sort of disillusionment with the future. You know,
there's a there would be someone else who could do
what I could do, but they can just say which

(07:20):
is why they'd be preferable. And I think those thoughts
are really hard because I think it's kind of spirals
out into lots of other aspects of your life. If
you start to think about, oh, well, why would someone
hire me, then oh, well, why would I bother going
to the gym? Because I'm going to have to walk
there and it's going to take half an hour.

S2 (07:38):
So how do you deal with that?

S1 (07:40):
I think talking to people about that to let people
know that this is how you're feeling, whether it's a
parent or, you know, someone at the school or someone
that you need like a staff member. Because those thoughts
are so easy to spiral. It was a really important
for me to win. I stopped feeling that I let
people know and I can start to talk through those

(08:02):
kinds of things. For example, through uni doing my master's
of genetic counseling, I would often, especially last year, was
feeling really down and really disillusioned. Just thinking, All right,
I can do genetic counseling. I'd be a great genetic counselor,
but everything else around the job is something that's going
to be so hard. Why would I get those positions

(08:24):
over anyone else? And I think having spoken to people
and identifying, that's how I'm feeling, then I started to
work on building myself back up and focusing on things like, Yes,
I have low vision, but in a way that lived
experience gives me an advantage over people that they can't have.

(08:48):
So in a counseling setting, I'm automatically going to be
perhaps more empathetic or be able to know more about
what supports are available for someone who might be going
through something because I've been there after school.

S2 (09:07):
What sort of support from blindness organizations did you get
through your tertiary studies up until now?

S1 (09:14):
Yeah, so definitely access to mobility training through guide dogs.
While I would be able to navigate to get to places,
I think when I was actually there, my navigation skills
weren't up to scratch to be able to really get
me to where I needed to go. I had to
go to a conference in the city and I found
the building all right, but it took me about 20

(09:35):
minutes to find the door.

S2 (09:37):
So how did training from guide dogs help you with that?

S1 (09:40):
What did they show you? I think that's when I
upgraded to a long cane as opposed to using an
ID cane just through them, observing me and sort of
talking with me. They sort of realized that I was
using the ID more as a long cane, which is
not really designed for and doesn't really have the sturdiness for.

(10:00):
So immediately transition to a long cane. And even just
strategies like not panicking or just taking the time to
try and be a bit more observant, just sort of
using your own intuition to sort of work out, all right.
Where would a door be? It would obviously be near

(10:21):
somewhere where it's easy to access. So rather than just
trying to find a hole to walk through, starting to
look for things like tactile tiles or looking for stairs
or a ramp, or even starting to do things like
take my phone out to use my phone camera to
extend my range of vision,

S2 (10:38):
talking of orientation and mobility, as they call it, in
the trade. People listening will be wondering, Did you ever
think about getting a guide dog?

S1 (10:46):
I guess I kind of always thought my vision was
too good to warrant getting a guide dog. But I
think through the mobility training and discussing with the trainers,
it's not about how good your vision is to get
a dog. It's more about how can a dog best

(11:06):
help you use what vision you've got to get around.
And I think that was a really big realization. I've
done all the paperwork, so I am on the waiting
list for a dog.

S2 (11:16):
What difference has the NDIS made for you? What have
you been able to benefit from it?

S1 (11:22):
Having a transport allowance is fantastic. Once I got that,
it was an encouragement to start using a lot more
things like taxis to get around before I would rely
on walking and public transport. Being able to purchase some
adaptive technology like the program Zoom text that I'm using
right now that was all paid for through the NDIS

(11:44):
and the kind that I used to get around was
paid for by the NDIS. And I guess previously they
would tend to be expenses that I would have to
pay out of pocket

S2 (11:54):
in 20 seconds. Explain to people what Zoom text is.

S1 (11:58):
So Zoom text is a computer program that is a
magnifier as well as a screen reader. So if I
was to go on a website, I can zoom in
and read what's on the page, and if my eyes
start to get tired, I can just get the narrator
to type over and read it to me.

S2 (12:15):
The disability support pension that blind people are entitled to.
Had you find out about that and tell us what
a difference that's made?

S1 (12:23):
It's been amazing taking some of the stress out of like,
I look at a lot of my friends who are like,
How am I going to work and study at the
same time? While that's something that could be a possibility
for me. I do get a lot of fatigue quite
easily when having to do a lot of things like
study and look around. So just having a bit of

(12:44):
a safety net to know that there is some money
coming in.

S2 (12:49):
Been thinking about someone who has recently gone through that
life changing experience of vision loss. What advice would you
give to them?

S1 (12:58):
Is usually always support available or a pathway around any
difficulties that you might be facing going through uni and things?
You don't know what support is out there until you look.
And I think people don't know how to support you

(13:20):
in the best way until you've had a conversation with
them about what the things that you might need. I
think people are amazing and are always there. They always
want to support you, but they may not have necessarily
the best idea of what support you actually need. So

(13:42):
working on having the confidence to introduce yourself, there's usually
always an option for support or a way around something.
For example, when I started to lose, my vision is
when I really started to get into reading books, and
I think that was quite a devastating time to go
from something that I was just getting into and loving

(14:03):
to something I couldn't do. But then something as simple
as the discovery of audio books and the Vision Australia
Library and even our local library had was just full
of audio books.

S2 (14:17):
So it's important not to assume that what one once
held has gone, but maybe there's different ways of doing
it now.

S1 (14:24):
Yeah, absolutely.

S2 (14:26):
He's still volunteering with Vision Australia, Ben. Tell us more
about that.

S1 (14:30):
I volunteer on the Kelly Link program as a facilitator,
so that is social phone conferencing with a group of
about five to 10 people that can just get on
the phone and have a chat. And then I also
am a volunteer in the peer support program, which is
a program run by Vision Australia that helps to connect

(14:50):
people who are blind or have low vision, who might
be going through a bit of a hard time or
would like to talk about a particular issue they're experiencing.

S2 (14:59):
So this is very much a two way thing for
each participant, even for the facilitator.

S1 (15:04):
Yeah, absolutely. I think when it comes to vision, there's
such a range of different conditions and different ways that
people can see. So my vision, even though I don't
have an exact diagnosis, might be very different to someone else,
but there could be commonalities that we both have. Like,
how annoying is it when you go to the supermarket

(15:25):
and you can't find the beans? Like, that's something that
even if you have different vision and different conditions, it
might be something you can relate to.

S3 (15:37):
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. Well, visit Vision Australia dot org.