June 24, 2021 • 36 mins
Nothing’s Off Limits: brings together experts and people with lived experience to discuss the topics we love to avoid but absolutely need to talk about.
Vision Australia estimates that, of the 384,000 people in Australia who are blind or have low vision; approx. 10% are blind whereas a staggering 90% have low vision. So in this episode, Tess and Polly explore the specific experiences, of having low vision. Do people understand that there is a spectrum of vision loss? What are the specific challenges you might face if you have low vision, and how do you navigate the literal and metaphorical obstacles of seeing differently? With the help of our guests we try and find out…
Nothings off Limits is made with the support of Vision Australia Radio and the NDIS Information Linkages Capacity Building grant.
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Episode Transcript
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S1 (00:03):
Nothing's off limits, things off limits, bringing together experts and
people with lived experience to discuss the topics we love
to avoid but absolutely need to talk about made with
the support of efficient Australia and the NDIS information linkages
and capacity building grants, including grants.
S2 (00:23):
Hello and welcome to the series where nothing's off limits.
My name is Polly and together with my co-host Tess,
over 10 episodes will be exploring some of those topics
which we might usually consider off limits and discussing them
openly and honestly and through the specific lens of blindness
and low vision. Remember, you can download this podcast from
(00:43):
the Vision Australia website. Just go to Vision Australia dot
org type. Nothing's off limits into the search engine, and
you'll be directed to a web page where you can
listen to this and earlier episodes and do make sure
you subscribe to make sure you don't miss any or
if you prefer. In this episode, we are talking about
some of the issues specific to having low vision, and
I particularly like to thank those of you who suggested
(01:05):
this topic to us when we were researching what we
should cover in these podcasts. One person who got in
touch talked about the sometimes uncomfortable sensation of being in
between not blind but not sighted, and like, you never
quite fit anywhere. Vision Australia estimates that of the three
hundred eighty four thousand people in Australia who are blind
or have low vision, approximately 10 percent are blind, whereas
(01:27):
a staggering 90 percent have low vision. And yet you've
told us that often people have a hard time understanding
the idea that there is a spectrum of vision loss
and what it means when you have some vision, but
that vision is compromised in some way. What are the
specific challenges you might face if you have low vision?
And how do you navigate the literal and metaphorical obstacles
of seeing differently? I guess today agreeing going to share
(01:49):
some of their experiences, as well as some of the
strategies they've developed to enable themselves and others to get
their heads around the concepts and realities of having low vision?
We asked you, have you ever thought you are not
blind enough and got some really interesting answers?
S1 (02:02):
Nothing's off limits. With Tess and Polly Polly, have you
ever thought you're not blind enough?
S3 (02:14):
No, I haven't. But I wish others would recognise that
I am blind and ask to do some of the
things that I need to do to get by in life.
Sometimes when I get on a bike without my cane
or I'm walking around the shops without an ID game
and I'm staring at things, they look at me only
because I'm not blind enough to be obviously blind, especially
(02:36):
during COVID. And when I'm in a supermarket looking for
some chocolate, I'll be up 14 chocolate bars to find
the one that I want to buy. And everybody is
looking at me going, Why is this guy touching 14
chocolate bars and you hold them up to your nose?
So it's not immediately obvious that I'm visually impaired. So complex. Yeah,
I wish I'm more blind. Yeah, but I wish it
was more obvious to others. That's a better answer.
S1 (02:56):
Yes. And it's quite challenging when you're not really sure
what kind of box you fit into. Are you low vision?
Are you legally blind? Was the sort of metaphor you
within the spectrum. It's worked to a disadvantage if I'm
trying to get assistance or support from the government where
(03:17):
you don't fit into the blind category because you don't
fit within the threshold. Actually, I've been told I'm not
blind enough. I applied for a job as a disability
presenter at the BBC. They were looking for people
S4 (03:31):
with disabilities to present programs to increase
S1 (03:33):
representation. Frankly, I did it with contact lenses and instead
of the Big Coke bottle bottom glasses and I was
told No, so you don't know disabled enough. But on
the other hand, I talk to people all the time
who try and get them to tell their stories who
who site is much worse than mine and have had
a much tougher time than me. So I really consider
myself lucky for the partial site that I have.
S5 (03:55):
Yes. How long have you got for me to this long?
I think I mentioned earlier that I use a cane
and I still have some vision, so I have very
low vision. And so when I'm using my cane because
it tells me all sorts of information like how close
things are to me and where steps are and how
deep they are and all those sorts of things, which
(04:17):
is why I need it. People automatically assume as soon
as I'm using the cane that I have absolutely no
vision and I've never had any vision and it's really weird.
Sometimes I feel like I need to pretend that I'm
more blind than I am in order for it to
not have other people be really confused or think I'm
some kind of weird fraud that likes to go around
(04:37):
using a cane just for the fun of it. Yeah.
And I get really bizarre experiences with this all my life,
like trying to get a plane and explain to them
that you might just need a little bit of assistance
knowing where the gates are and that you're not able
to read any of the signage. So could they please
just give you some good directions results in you being
manhandled into a cart and driven around and led everywhere,
(05:01):
even though you might? Over and over again that you
have some vision and you're able to walk just fine
and you just need them to tell you where to go.
They seem to not be able to hear this. And
then you find that you just pretend that you go blind.
I remember sitting on a plane going fine, I'm tired.
I'm over this. I'll just pretend I'm completely blind. So
I'm not a little boy. You need to do
S1 (05:22):
another little bundle of Bailey's would really help my wife.
You're listening to nothing's off limits. We're tense and poorly
produced by Vision Australia radio.
S2 (05:33):
It's now time to welcome our first guest. Tony Scott
has actually been told that he's quote, not blind enough.
He was also a gold medallist in the blind championship bowling.
He's retired and we're delighted to have him with us today. Tony,
thanks for being here.
S6 (05:50):
Great to be here from sunny Port Macquarie, which is
pouring down rain. Oh no,
S2 (05:54):
me. Oh, that's not good. Tony, my first question is
what is your vision loss and when have you been
told that you're not blind enough?
S6 (06:05):
Well, when I was first classified as legally blind, I
had a lot, lots of trouble on the bowling green. Well,
I was the bowler. And now these days, after working
on all different tricks of the trade and whatnot, the
number of so-called able bodied bowlers that say to me
that you're not blind because you can still bowl close
to the kidney, whereas if I don't do that well,
(06:27):
maybe you should have a look through my eyes to
see what I can see. I started to lose my
eyesight about 20 years ago, and this gradually started, but
it was a funny situation where it started on the
left eye and then I'd lose a bit of eyesight
and then it stop and then the ride I would
start to catch up. And then once they got level again,
the left eye would then start again and in the
right eye, and it was sort of going back and
(06:48):
forth until basically it sort of levelled off. I still
keep going back and getting a check every 12 months
just to see whether it's improving or not, because you
just learn to deal with what you've got.
S2 (06:59):
How did that feel then having low vision yourself and
dealing with the challenges associated with that and then being
told that you weren't supposedly blind enough? It's a very
strange phrase, isn't it?
S6 (07:10):
The funniest thing I can always remember when I first
lost my eyesight, though, I was that the Vision Australia
shop in Bendigo, getting some aid to help me through
a general day to day proposition, and they suggested that
I wear a badge that I am visually impaired. And
I said, Well, why the heck would I want to
promote that? I am disabled or with low vision for
the rest of the world and every day? Now that
(07:31):
I think of that, I think I wish I had
it got one of those badges because people just don't
think that your vision impaired. They basically say that there's
two degrees of blindness. You're either totally blind or you
can see there's no bearing.
S2 (07:43):
It sounds like there's a real lack of understanding in
the wider community about how vision loss manifests itself. Have
you encountered that outside of bowling?
S6 (07:53):
Very much so. I keep saying my able body, but
with the people that can see there seems to be.
The general consensus is that people are either NZ or
they can't see. There's no degrees of various other oddly
totally blind, but they can see.
S2 (08:06):
So in realising that we have these community misconceptions. What
advice would you give for people who are low vision
who are just beginning to deal with these misconceptions? What
are some any any tricks of the trade that you've
learned to cope with that?
S6 (08:21):
Well, a lot of it, you just learn naturally, you
do what your eyesight will allow you to do. You know,
reading papers to start with, like I said, it has
gone out the door because I just can't read for
print anymore. So it's a matter now that I watch
the news on TV, even the TV I do. I
sort of started to get bigger and bigger TVs, and
I'd start moving the chair closer and closer and closer
(08:42):
to the screen because I couldn't read the print that
was on the TV. So I go out and get
a bigger telly. So now I've got a really big
telly and the take goes back again. And I know
that when my eyesight starts to fail a bit more again,
the chair will start moving closer and closer to the telly.
So I don't have time to go back to the
time interest and get my eyes check again.
S2 (09:03):
And have you found, you know, when people have said
that you're quote, not blind enough, have you found that
talking to them about your low vision and explaining it
to them?
S6 (09:12):
Has that helped in bowls, for example, their sport of
classifications of blindness? You basically go from here legally blind
after you're totally blind and there's a couple of classifications
in the middle of it. So I like to explain
the four different classifications just to educate people because unless
it affects them directly, they just don't know.
S2 (09:29):
Tony, thank you so much for joining us. I think
your words will really resonate with a lot of people
in the same situation.
S6 (09:35):
Thank you. If I may say to people that are
losing their sight, don't let it get you down. Learn
to deal with what you've got. Use what you've got.
Don't think what you've lost what you still have.
S2 (09:48):
We had so many people we wanted to bring on
to talk about this, that we're changing up a bit
and devoting the rest of the program to bringing together
a panel of guests who are vision to share their
experiences and strategies. First on the panel is Michael Linky,
now a general manager at Vision Australia. Michael has forged
a career in the sighted world, often feeling that he
(10:09):
is not blind enough and often stuck on a diet
of markets because that's a menu he knows. Michael, we're
going to ask you more about that later. And joining
Michael is Andrew Moffat. Andrew is a mediator and academic
at Melbourne Law School. Legally blind in the UK, Andrew
has lived with low vision from birth and only since
he joined the Board of Vision Australia and now as
(10:30):
chair as he becomes slightly more comfortable talking about it. Welcome, Andrew.
S4 (10:34):
Yeah, thanks for asking me to join in today.
S2 (10:35):
We are delighted to welcome back Samantha Hardie as a
Service Connect officer. She performs a vital role connecting people
with support and services. Samantha is herself flirtation and sometimes
came new to welcome everyone. Maybe we'll start with a
question to all of you. Do you think that most
people understand that there is a spectrum of vision loss? Michael,
(10:57):
maybe we start with you.
S4 (10:58):
From my experience, Polly, I'd say no. People think that
we put braille on something, and anyone who has a
vision impairment can read braille. You've got that spectrum of
people who are totally blind. Some do. Some don't read
braille through to people like the three of us here
today who have varying different types of eyesight in different
conditions and different circumstances. I don't think there is a
broad understanding in the whole community that there is this
(11:19):
spectrum of people with limited vision all the way up
to total blindness. So my take on this question really
is either I look incredibly stupid or people don't understand
this spectrum because the number of times people say, Do
you know, mate, possibly you should consider getting glasses. I mean,
I must look really, really thick because it feels to
(11:39):
me that that would have been probably Plan A. If
it was fixable like that.
S2 (11:44):
Andrew, how does that make you feel normally cross?
S4 (11:47):
But I check myself quite quickly because I think actually
demonstrated that one of the two of the people in
the discussion is stupid, and it's probably not me.
S2 (11:54):
Samantha, how about you?
S7 (11:56):
I would agree with the other two and also just
say 100 percent. I agree that people don't get that.
There's a spectrum. It's like you're blind or your sighted
and there's nothing in between. And I think that's why
it's so confusing when when you're someone that say might
be using a cane but has some vision, you might
be some sort of strange fraud. Like maybe I go
(12:17):
around using a cane for fun or something. I don't know.
It's very strange, and it's hard to deal with because
you feel like you either have to explain yourself all
the time or you somehow you have to pretend that
maybe you're blind and then you are just to get
things done.
S2 (12:33):
Samantha, you mentioned feeling the need sometimes to pretend to
be almost more blind than you are feeling like a
little bit of a fraud sometimes. Do you think there's
pressure to conform to an idea of blindness?
S7 (12:49):
I would say both, depending on the day. Some days
I really like to defy it, but it does take
more energy and more effort to do that, and you
do get more of a push back. So on other
days when I'm not feeling up for that, it's a
strange sort of dance to be out in the world
using your cane. And what happens with me is that
(13:09):
I can see people's reactions to the cane and they'll
make faces at me, or some do tears and jump
over the cane or
S2 (13:17):
or so
S5 (13:18):
weird,
S7 (13:19):
weird things. And it's very strange. It's good to point
out that if someone does break your cane when you're
out and about and you have really low vision, you
might not be able to get home very easily.
S4 (13:29):
And we've all seen the meme of people with their
iPhones in one hand using a cane in the other,
which is the future that some people have predicted. And
I notice that a lot. I'm a sometimes cane user
like Samantha, and people will bump into you on their
phone and look at you thinking you're the stupid one
until they see the kind of go or hang on
a sec. Maybe I'm the stupid one. And yes, you
shouldn't be using your mobile phone as you're walking down
(13:50):
the street, are you?
S7 (13:51):
Well, I was up until a couple of months ago
living in the CBD in Melbourne, very, very busy and
under non-COVID times and just trying to navigate with people
on their phones and assuming that the person in front
of them will get out of their way is really challenging.
And then often they would sort of look at you
with surprise when when you bump into them, like, what?
(14:11):
What are you doing?
S2 (14:12):
And that's a really interesting point. And COVID and the
whole kind of social or physical distancing as it technically is,
has that brought any specific problems because there's a lot
of assumptions that you're able to see where people are
1.5 metres away and you're able to look sort of
through perspex screens and new things from a distance? Has
that caused you additional problems over the last 18 months?
S7 (14:34):
It's tricky for me to use the the COVID sign
in app, I think with the technology that I use.
So that's been a challenge to explain to people that
I have to sign in or off, and I have
to give them my details rather than sign some. Thing,
so that's been really challenging.
S4 (14:50):
I look I'll put a vote in for one positive
aspect of COVID with some as restaurants reopen lots of
the move to online menus. And that's really good because
a normal menu, I mean, you know, typical restaurant, you know,
especially at night time, romantic dim lighting, what have you
and really small writing. And I'm terrified that I'm going
to end up inadvertently buying the expensive wine or order
(15:10):
or the dish with cauliflower on it. But but but
quite often now because of, you know, sanitation reasons, then
I can look at the zap, zap the menu up
and then pinch it up and read it much more
easily on my phone. So there's been some positives in
that respect.
S7 (15:25):
Speaking of menus, Michael, you
S2 (15:28):
have said off air that you that sometimes you don't
want the next generation of kids to be always having
to go to matches because they don't want to have
to go across the road and ask what's on the menu?
What held you back from asking? And what would be
some advice for someone who might want to try out
something new? Like, I don't know, Nando's roll it. I mean,
there's so many places. I mean, Mac is great, isn't it?
S4 (15:50):
On July, Mac as I enjoy a bit of bit
of Nando's these days as well, but more so in
my younger days when I wasn't a cane user and
the reaction I'd get in a restaurant or a takeaway
food place when you said, I can't see the menu,
can you eat it and they look at you as
if you hadn't been to school, you hadn't done reading,
writing and arithmetic, and you couldn't be bothered reading the
menu and they had to stand there and read this menu, too.
(16:10):
And then you'd explain about your eyesight and they look
at you and go with no cane. There's no guide, dog. Well,
what I started doing is once you learn a menu,
you think, Well, you know, as a teenager growing up,
it's just much easier to go into Mac because I
know it's there. I'm going to be back on Sunday.
You find yourself just going to those places, you know,
and routine is is really important. One of the strategies
that I've used over my life is that routine. So
(16:32):
as negative as that, images of just going to McDonald's
all the time with limited eyesight. Once you've worked out
a routine, it becomes very easy and travel is one
of those things or getting from from place to place
B is one of those things that you can do
when you can use that. But in that scenario, it's
very bad. And I don't want kids today being fearful
because my experience now later in life is that once
(16:55):
you explain your situation, most people are willing or able
to obviously able to help. But they're sometimes also embarrassed
that they didn't notice or they weren't willing to help
initially and don't be be destined to a lifetime of
eating Macca's as delicious.
S2 (17:10):
And this is just for the podcast. But tell me, Michael,
when you explain to people and they get all embarrassed,
do you get a free McFlurry out of it?
S4 (17:18):
Thought I had an experience on an airplane with my car?
And actually it was a flight from Brisbane recently and
the gentleman was sitting in my seat and I had
the window seat and he looked at me and said, Well,
you're blind mate, just to sit in the aisle seat.
And I said, No, no, no, no, I want to
look out of the window. So I get the odd
window seat from from time to time. But I've never
had an free McFlurry from McDonald's. Maybe I need to
(17:38):
ask one.
S2 (17:39):
Isn't it strange? You can really baffle people when I'm
going for a walk around college, presented mail when people
are like, Oh, where are you going in circles? You
need help. I said, No, no, no, I'm just taking
in the scenery. It baffles those who really know what
to do.
S4 (17:51):
Well, this guy had no idea. He jumped out of
his seat quick, smart and moved across to the aisle
seat and allowed me to sit in the window seat
and I progressed to stare out the window. There was
an eight p.m. flight, so it was dark as well.
S2 (18:02):
I want that little bottle. Well, Michael, I'm going to
completely undercut your message. Sorry, because I'd love to hear
Andrew's story where I think you took a more confrontational
approach in a pub that maybe didn't have quite such
a positive outcome for you.
S4 (18:16):
I happened to be in a pub in London. I
really love English beer, and it's invariably better with the
right flavour of crisps. But you know, unfortunately that's not
been standardised. So I'm there and there's lots of crisp packets,
but they're kind of, you know, behind and I couldn't
see them. And I think probably realistically, this was before smartphones,
because what I do now is pull my phone out,
kind of take a sneaky picture, pinch it up and
(18:38):
work it out that way. You know, I did. The
only other thing I could do, you know, find a
better place and can I? Can you tell me what
crisps you have? Any kind of turned around kind of
waved his arm with an expansive gesture and said, They're there, mate,
are you blind? Ordinarily, you know, I draw it. But
as it happens, I had fairly recently been signed up
as a registered blind person by the City of Westminster,
(18:58):
and I had this blind person's card, which I was
intending to pretend didn't exist. But I thought, No, this
is I'm standing in front of an open goal here, so.
So I said, funnily enough, mate, yes, which is exactly
why I asked you. So I pulled out my card anyway.
He looked suitably ashamed, as you might expect, and I
thought this feels like a win. It was a completely
pyrrhic victory because he was so embarrassed that he couldn't
(19:20):
make eye contact with me for the rest of the night.
I could have caught fire in front of the bar.
He would have not looked at me so. And not
only did I after that struggle with Chris, but I
couldn't even get my beer refilled, so I've been somewhat
more circumspect since then. I used the cane from time
to time and it's sporadic use. I strategically use it
(19:42):
now when I know I'm going to encounter a situation
that will require me talking to someone yesterday. When I
was flying from the airport, I left my face mask
in the cabin and I walked into the airport without
a face mask and I thought, Oh jeez, I'm going
to look a bit stupid here. But I grabbed McCain
and I wandered over to the Qantas counter and said,
I've lost my face mask and it was a happy cheer.
Here you go. Do you need any help putting the
(20:02):
face mask on? And I don't know whether I would
have got a similar response had I not had a cane.
We need to use the tools when they're available as in,
you know, when you go into a shop not necessarily
asking for for Christmas, but looking for chocolate or breakfast
cereal or whatever it is in a local shop. Getting
my phone out to read all the labels. But then
people look at you again because the phone's an inch
from my nose and the phone is an inch from
(20:22):
the the packet of food that I'm looking at to
try to work out what I'm buying. So it's not
always obvious. And I think with some other disabilities, there
is that obvious miss of an obvious one is a wheelchair.
It is immediately obvious that the person either can't walk
or has difficulty walking where blindness and other sensory disabilities.
It's not immediately obvious, and the tools that we use
(20:44):
are varied to some of those tools a portable summer
in the workplace somewhere at home. There's a range of
tools that we can use, and they're not always obvious
to the third party walking on. So and I don't
think people invariably want to wear a badge or a
hat saying, Hey, I'm vision impaired or a T-shirt saying
I'm vision impaired. But that may actually be the solution.
S2 (21:02):
Who knows a whole range of merchandise? Hey, I'm vision impaired. Yeah,
but
S4 (21:07):
if I can jump in on this one, that's, you know,
I'm kind of listening to this and almost feeling slightly guilty.
But I'm going across this panel. I think I've got
the least bad eyesight mine slightly better than Michael's. Not much,
and I think my eyesight is probably materially better than Samantha's,
I would guess. I don't know in terms of acuity numbers,
but as an observation that seems to be the case,
I'm feeling guilty because I'm thinking, Well, you know, maybe
(21:28):
I'm letting down the kind of, you know, community by
not evidently signifying my low vision all the time. But honestly,
my major strategy is to be selective as to let
people know I have low vision. And, you know, in
my day job, very often people hand me, you know,
sheets of paper printed often and in probably small font
because they only have an A4 printer. So they hit
(21:48):
they fit all columns to page button on Excel. And
it's a question for me then to us, OK, do
I then pull out one of the very many range
of magnifies that I have in my bag? Or do
I say, Look, just talk me through it, give me the,
you know, give me the key points. And it's a
it's a it's a decision that I actively make all
the time. So, you know, to an extent, I think
I'm quite situational as to whether I disclose or not.
(22:11):
If I do, I do. And as Michael says, you know,
if I'm in the supermarket, if I'm reading something, it's
pretty obvious. But in a professional context, I may not
want it to be obvious. In which case I may
find a way of not reading things and, you know,
finding other ways around them if I can.
S2 (22:24):
And Samantha, you mentioned that you use a cane. Is
there anything else that really helps you?
S7 (22:29):
I agree with everything everyone else is saying. I'm sort
of in two minds that I tend to switch between
not really wanting to let people know that I have
vision impairment. And it's not wouldn't be clear to anyone
that was observing me, probably in a public situation to
using a cane and maybe a mobile phone that's speaking
instructions to me or something, which makes it more obvious.
(22:51):
And I have this conversation with clients a lot as well,
where they they'll often opt to take up an ID
cane to make it easier for them to be out
in public, for instance, to go into a shopping mall
or to get public transport. And at that point, for them,
it may not be that they necessarily need a full
mobility cane, but the cane just helps them to feel
(23:11):
more safe in the community, with people knowing that their
vision impaired.
S2 (23:15):
Is there any sense of a hesitancy about accepting an
ID cane? Because it is, I guess, kind of a
physical demonstration of accepting your low vision?
S7 (23:25):
I think the hazard to the hesitancy is around people's
reaction to the cane once you bring it out, more
so than people accepting whether or not they need one
because the cane isn't doesn't really give you very much information.
So it's really just, as the name implies, to let
other people know that you have a vision impairment. But
I think people can really react to it quite strongly.
(23:47):
So it can be a bit confronting when you first
bring it out and all of a sudden, you know,
people are reacting.
S4 (23:53):
That's the thing with the cane. It's intermittent use where
a directional cane or mobility cane is used all the
time and I'd cane and I use my I.D. can
win the circumstance permit. So if I go to a
game of football and there's a big crowd around, I
don't feel comfortable in the big crowd. I'm not going
to find the stairs or I'm not going to see
the barriers in the bollards in your way because there's
a big crowd there. So I get the cane out.
(24:14):
So people are aware that I'm the one with the
vision impairment and they should take it out of my
way because if I bump into them, it's not my fault.
It's probably therefore, I think that situational use and then
people will look at you and go, Well, you had
a cane out 10 minutes ago. Now you don't have
one out or you're sitting at the football and you're
watching the football through a pair of binoculars like everybody else.
You clearly can see, so are you a fraud? And
(24:35):
I think that that's the issue that that some users have.
With that I'd cane because it's in and out of
your bag all the time.
S7 (24:41):
I often wonder about that if if, say, for instance,
someone is commuting with me to work and they. See,
someday say you have my cane and some days I
don't know whether they're thinking to themselves what is going
on here.
S4 (24:53):
Like, she's had a heavy night last night, so you
shouldn't worry today.
S5 (24:57):
I thought she was blind and now she's not blind.
S2 (25:00):
It's a miracle. Are there any other tips and tricks
you've come up with, either helping people understand your situation
or slipping past
S7 (25:09):
it these days? I have an abbreviated version, which would
be just to say to someone, I have no vision,
I have some science. But maybe if you could just
tell me what's on the border, that's really all I need.
I find if I say something like that, it's sort
of without going into much more detail than that. It
narrows it down.
S4 (25:26):
The Boston airport, I notified that I was visually impaired
and I needed assistance from gate to gate because I've
never been to Boston before, and the assistance it turned
up was a wheelchair and the gentleman said, I'm here
to assist you. And I looked at him. I said, Mate,
it's the eyes that don't work. The legs are fine.
He's just walking up to the gate and I walk
with him with the wheelchair. So yeah, sometimes when you
ask for that assistance, people aren't fully aware of what
(25:46):
assistance you need. I think Samantha's strategy, they're being specific
about what help you need. I need the time table
read or I need directions. If you give me a
left right 50 meters, give me some directions I'm okay
to to locate that. And if you struggle like me
to even acknowledge that you have any eyesight issues, if
you can avoid doing that, I mean, quite often you
don't need to. So I mean, if you go to
(26:07):
the restaurant classically, you know, you can talk about the specials,
you know, you can you suggest a wine that goes
well with that you never even need to see a
wine list. You know, you go to museums. I happened
to be visiting my old university. There's a new museum
that's just appeared. And, you know, I ask them to
explain to me what the things are. So, you know,
I didn't need to be able to demonstrate that I
couldn't read the signs or anything of that nature. So,
(26:28):
so quite often, you know, if whether you choose to
disclose that you've got a visual impairment or not. Lots
of people are very willing to communicate verbally with you.
If you ask them, actually, then your motivation for doing
that doesn't ever need to be disclosed. If you don't
want it to be getting up close to the paintings
at museums, sometimes sometimes Andrew alert security that you might
true you might be a thief or you are visually impaired.
S7 (26:47):
Did that indicate if you're going to try and see
the plaque suddenly found?
S4 (26:52):
So that that's that's definitely true. But I do remember
once going to an impressionist museum in an exhibition in London,
it was one of those ones where there were a
million people going every day and you had to get
tickets and you had a two and a half minute
window to see a thousand paintings and. And everyone said,
you know, you can only really appreciate it if you're
standing really far back. And I thought, Well, I don't
have that problem.
S2 (27:11):
Happy viewing.
S4 (27:14):
I got close to Starry Night in the museum in
New York once and for security guards came rushing over
and I waved my kind of my way. Oh, it's okay. Okay, cool.
Don't breathe on it.
S2 (27:23):
They say I've been known to pot crowds with my cane.
They they just scatter. They're terrified of it. I don't
know what they think is going to happen, but
S7 (27:33):
apparently they're it's a very terrifying thing
S2 (27:35):
that can be
S4 (27:37):
their handy weapon. Sometimes Typekit things really are.
S2 (27:40):
I don't know how many bus drivers I've whacked around
the ankles with my cane, but there are few. And
how many of those times have been accidental test? Not many,
not many, I have to tell you. So our final
question will segway us quite nicely into our next episode,
which is on community and identity? I'll throw this open
to anyone who wants to jump in first. And the
(28:01):
question is, how connected do you feel as someone who
has low vision with the community who's totally blind?
S4 (28:07):
I feel very connected. I've been my vision, my whole life,
and I've played blind sports and vision impaired sports. A
number of my friends today are from that and their
low vision, as well as totally blind and obviously working
for a blindness agency such as Vision Australia, who does
a fantastic job in the community. There is significant connectedness
with people here. Started 50 per cent of our staff,
(28:27):
a low vision or totally blind. So I feel connected
with the community, but I think I need to get
McCain out more and get off McDonald's.
S2 (28:36):
Samantha, how about you?
S7 (28:37):
I think I would answer that by saying I feel
as connected as I want to be. I don't think
I completely identify, you know, my whole personality as being
a vision impaired person. I'm many things, so I think
I feel as connected as I like to be, which
is fairly connected. But it's not my entire identity.
S2 (28:56):
And Andrew, I'm
S4 (28:57):
going to have to answer this in the hope that
nobody actually from Vision Australia listens to this. And I
think that type is probably unrealistic. Given my role as chair.
I'm connected with the organization, the blindness community, because I
was asked to take a governance role here. So that
does give me a connection with the blindness community. But
as much as as a teenager, I was a client
of the low vision clinic in Kooyong. So I have,
(29:19):
in fact, as a teenager, been a client. But for me, yes,
my eyesight has been what it is stable since birth,
so I haven't needed, I suppose, to be part of
the blindness community at all. And I'm very aware in reality,
and I have this discussion with Vision Australia's deputy chair,
Bill Jolley, who's a mathematician, let's say, you know, statistically, Bill,
I'm told I've got 15 per cent eyesight, but 100
(29:41):
per cent I'm relying on vision. I live in a
visual world. You know, I look at things now I'm. Questionably,
I use my hearing, I rely on my hearing more
than I would if my eyesight were perfect. No doubt
about that, but for the most part, I feel the
way I interact with the world around me is much
closer to the people with 100 percent eyesight than the
people with zero. I use things to fill in the
(30:02):
bit that I don't have. But so, so consequently. I mean,
I'm very engaged. I've got, of course, a huge personal
mission to help blind people, and I'm in awe of
how people who can't see anything at all interact with
the world. But honestly, I don't think that my low
vision gives me any material insight into the extraordinary way
people live if they can't see it all. I really don't.
(30:25):
I'd love to say something different, but I think that's
my personal truth.
S2 (30:29):
When we've talked about kind of, I guess, people understanding
low vision, it's kind of been most of the answers
have been around from a sighted perspective. Do you think
people who are completely blind understand what it's like to
be low vision?
S4 (30:41):
I don't see how they can. I think I've got
a number of totally blind friends who have been blind
since birth and explaining colour to them. I can see color,
I can see blue, I can see pink. I'm not
very good at matching colors and my wife helps in
that regard. I don't think that's got anything to do
with sight. I think that's a lot to do with taste.
I'd rather go out and look like Ronald McDonald and
some days. But yeah, how do you describe color to
(31:04):
someone who has no sight? As Andrew said, We live
in a sighted world, so I think that is difficult
to do. So, yeah, I think it's a very hard
thing to do and we can't imagine because that's what
people say. Just close your eyes and you can imagine
what it's like to be born where you can't because
you can visualize a tree, a bird, a car, a color,
a shape with someone who's been blind since birth cannot
(31:25):
visualize a color or a bird or a shape in
that other than the tactile experience that they've had that
they've learned through their hands, but they haven't had the
advantage of visually seeing that in a three dimensional space.
S2 (31:36):
Samantha, what about you?
S7 (31:37):
I'm going to say something maybe slightly different here. Well,
I think what I'm really interested in around this topic
is not so much. Always the same question is what
can't people see and what can't they do? But how
do people who are blind or vision impaired experience the
world differently, like sometimes some of the things they experience
are quite wonderful and quite diverse, and I find that
(32:00):
really interesting.
S4 (32:01):
Something interesting that Samantha just said around experiencing the world different.
I'm a photographer and people look at me sometimes sideways
when I go. You're a photographer. Hang on. You can't
see what's going on. And I've got nice camera gear
and I take photos, but I take those photos because
I can't experience the world as my sighted counterparts can.
My wife can stand there and look at the Empire
State Building, and she can see the detail of the architecture.
(32:23):
And I love architecture. I'm very interested in architecture. She
can see all that and I can't see it. It's
just a blurry object, you know, towering in front of me.
So I take photos of that and then later on,
review those photos on a large screen computer and zoom
them up. And, you know, have a look at them
and understand the detail. Then I can have a conversation
with my wife on an equal footing. Did you see
this carved stone? Did you see that there was a
(32:43):
plaque here on the fourth floor with a testament to
this person? Or did you see the window dressing in
this window? She can see all that in the experience
that she had during the day. I don't see that too.
Later on in the afternoon, when I'm reviewing the photos
or the next day and you know, I went to
all the rue recently and everybody standing in, wow, look
at them is wrong. It's fantastic. And I'm going where
where they is right in front of you. You can
see this, this massive rock. And it's only when I
(33:05):
took photos that I started to understand the textures and
the colors and how wonderful all the room is as
a as a monolith to have a look at. So
I think what tested there, what Samantha said is just
right on the money, right on the money. I'm one
of the things that I think we need to do
if we're going to be in a with limited vision
in the world. We're making kind of educated guesses about
(33:28):
what something is or who somebody is. You know, that
person kind of looks like it may well be John
or Jane, that restaurant that place, what have you. That
car looks like it's probably a taxi, so I'm going
to put my arm out whatever it might be. And
you know what? Quite often those educated guesses are wrong,
and I'm really sorry, Jane, you. I'm really sorry. You
(33:50):
look like somebody. I know we do that. I mean,
that's inevitable. You either sit tight until you've got certainty,
but you withdraw yourself from the world or you, you
kind of muddle through. But inevitably you make lots of
mistakes on the way. And when you've got low vision
and it's not obvious, I mean, if you blind people or,
you know, cut you some slack, I suspect. But if
you don't look like you've got a particular impairment, then
(34:11):
those mistakes people assume you're an idiot. It takes some time.
I mean, you need to have a fairly, I think,
thick skin because you will make lots of those mistakes
and you look like a bit foolish sometimes. But but
I think people should acknowledge that because it's either that or,
as I say, just take yourself onto the sidelines for
lots of things.
S2 (34:29):
I think that's a fantastic note to end on. Guys,
thank you so much to our wonderful panel.
S4 (34:35):
Thank you. Thanks very much. Thank you.
S2 (34:36):
Thanks, everyone. This has been a wonderful episode about being quote,
not blind enough. So many great insights. And remember, this
podcast can be downloaded. By the Vision Australia website, just
go to Vision Australia dot org and type and nothing's
off limits into the search engine you redirected to our
web page and do subscribe because you don't want to
(34:57):
miss any episodes, and you can view this episode and
early ones or if you prefer. Just tune in to
Vision Australia radio. Next time, we'll be bringing another panel
of guests together to delve further into the question of
identity and community and explore the tricky topic of disclosure.
But meantime, thank you again to our wonderful guests, and
thank you for joining us for the show where nothing's
(35:17):
off limits.
S1 (35:23):
That was nothing's off limits. Made with the support of
efficient Australia and the NDIS information linkages and capacity building grant.
Learn more about our radio and podcast offerings by visiting V.J. Radio,
dot org and access all there is to know about
our range of client services via our website. Vision Australia
(35:44):
dot org. We thank everyone who participated in this episode,
but especially you for listening today. We rely on your support,
so please share this podcast with just one person today
and brighten our day or rate us on your preferred
podcast platform. Bye for now.
Nothing's off limits, things off limits, bringing together experts and
people with lived experience to discuss the topics we love
to avoid but absolutely need to talk about made with
the support of efficient Australia and the NDIS information linkages
and capacity building grants, including grants.
S2 (00:23):
Hello and welcome to the series where nothing's off limits.
My name is Polly and together with my co-host Tess,
over 10 episodes will be exploring some of those topics
which we might usually consider off limits and discussing them
openly and honestly and through the specific lens of blindness
and low vision. Remember, you can download this podcast from
(00:43):
the Vision Australia website. Just go to Vision Australia dot
org type. Nothing's off limits into the search engine, and
you'll be directed to a web page where you can
listen to this and earlier episodes and do make sure
you subscribe to make sure you don't miss any or
if you prefer. In this episode, we are talking about
some of the issues specific to having low vision, and
I particularly like to thank those of you who suggested
(01:05):
this topic to us when we were researching what we
should cover in these podcasts. One person who got in
touch talked about the sometimes uncomfortable sensation of being in
between not blind but not sighted, and like, you never
quite fit anywhere. Vision Australia estimates that of the three
hundred eighty four thousand people in Australia who are blind
or have low vision, approximately 10 percent are blind, whereas
(01:27):
a staggering 90 percent have low vision. And yet you've
told us that often people have a hard time understanding
the idea that there is a spectrum of vision loss
and what it means when you have some vision, but
that vision is compromised in some way. What are the
specific challenges you might face if you have low vision?
And how do you navigate the literal and metaphorical obstacles
of seeing differently? I guess today agreeing going to share
(01:49):
some of their experiences, as well as some of the
strategies they've developed to enable themselves and others to get
their heads around the concepts and realities of having low vision?
We asked you, have you ever thought you are not
blind enough and got some really interesting answers?
S1 (02:02):
Nothing's off limits. With Tess and Polly Polly, have you
ever thought you're not blind enough?
S3 (02:14):
No, I haven't. But I wish others would recognise that
I am blind and ask to do some of the
things that I need to do to get by in life.
Sometimes when I get on a bike without my cane
or I'm walking around the shops without an ID game
and I'm staring at things, they look at me only
because I'm not blind enough to be obviously blind, especially
(02:36):
during COVID. And when I'm in a supermarket looking for
some chocolate, I'll be up 14 chocolate bars to find
the one that I want to buy. And everybody is
looking at me going, Why is this guy touching 14
chocolate bars and you hold them up to your nose?
So it's not immediately obvious that I'm visually impaired. So complex. Yeah,
I wish I'm more blind. Yeah, but I wish it
was more obvious to others. That's a better answer.
S1 (02:56):
Yes. And it's quite challenging when you're not really sure
what kind of box you fit into. Are you low vision?
Are you legally blind? Was the sort of metaphor you
within the spectrum. It's worked to a disadvantage if I'm
trying to get assistance or support from the government where
(03:17):
you don't fit into the blind category because you don't
fit within the threshold. Actually, I've been told I'm not
blind enough. I applied for a job as a disability
presenter at the BBC. They were looking for people
S4 (03:31):
with disabilities to present programs to increase
S1 (03:33):
representation. Frankly, I did it with contact lenses and instead
of the Big Coke bottle bottom glasses and I was
told No, so you don't know disabled enough. But on
the other hand, I talk to people all the time
who try and get them to tell their stories who
who site is much worse than mine and have had
a much tougher time than me. So I really consider
myself lucky for the partial site that I have.
S5 (03:55):
Yes. How long have you got for me to this long?
I think I mentioned earlier that I use a cane
and I still have some vision, so I have very
low vision. And so when I'm using my cane because
it tells me all sorts of information like how close
things are to me and where steps are and how
deep they are and all those sorts of things, which
(04:17):
is why I need it. People automatically assume as soon
as I'm using the cane that I have absolutely no
vision and I've never had any vision and it's really weird.
Sometimes I feel like I need to pretend that I'm
more blind than I am in order for it to
not have other people be really confused or think I'm
some kind of weird fraud that likes to go around
(04:37):
using a cane just for the fun of it. Yeah.
And I get really bizarre experiences with this all my life,
like trying to get a plane and explain to them
that you might just need a little bit of assistance
knowing where the gates are and that you're not able
to read any of the signage. So could they please
just give you some good directions results in you being
manhandled into a cart and driven around and led everywhere,
(05:01):
even though you might? Over and over again that you
have some vision and you're able to walk just fine
and you just need them to tell you where to go.
They seem to not be able to hear this. And
then you find that you just pretend that you go blind.
I remember sitting on a plane going fine, I'm tired.
I'm over this. I'll just pretend I'm completely blind. So
I'm not a little boy. You need to do
S1 (05:22):
another little bundle of Bailey's would really help my wife.
You're listening to nothing's off limits. We're tense and poorly
produced by Vision Australia radio.
S2 (05:33):
It's now time to welcome our first guest. Tony Scott
has actually been told that he's quote, not blind enough.
He was also a gold medallist in the blind championship bowling.
He's retired and we're delighted to have him with us today. Tony,
thanks for being here.
S6 (05:50):
Great to be here from sunny Port Macquarie, which is
pouring down rain. Oh no,
S2 (05:54):
me. Oh, that's not good. Tony, my first question is
what is your vision loss and when have you been
told that you're not blind enough?
S6 (06:05):
Well, when I was first classified as legally blind, I
had a lot, lots of trouble on the bowling green. Well,
I was the bowler. And now these days, after working
on all different tricks of the trade and whatnot, the
number of so-called able bodied bowlers that say to me
that you're not blind because you can still bowl close
to the kidney, whereas if I don't do that well,
(06:27):
maybe you should have a look through my eyes to
see what I can see. I started to lose my
eyesight about 20 years ago, and this gradually started, but
it was a funny situation where it started on the
left eye and then I'd lose a bit of eyesight
and then it stop and then the ride I would
start to catch up. And then once they got level again,
the left eye would then start again and in the
right eye, and it was sort of going back and
(06:48):
forth until basically it sort of levelled off. I still
keep going back and getting a check every 12 months
just to see whether it's improving or not, because you
just learn to deal with what you've got.
S2 (06:59):
How did that feel then having low vision yourself and
dealing with the challenges associated with that and then being
told that you weren't supposedly blind enough? It's a very
strange phrase, isn't it?
S6 (07:10):
The funniest thing I can always remember when I first
lost my eyesight, though, I was that the Vision Australia
shop in Bendigo, getting some aid to help me through
a general day to day proposition, and they suggested that
I wear a badge that I am visually impaired. And
I said, Well, why the heck would I want to
promote that? I am disabled or with low vision for
the rest of the world and every day? Now that
(07:31):
I think of that, I think I wish I had
it got one of those badges because people just don't
think that your vision impaired. They basically say that there's
two degrees of blindness. You're either totally blind or you
can see there's no bearing.
S2 (07:43):
It sounds like there's a real lack of understanding in
the wider community about how vision loss manifests itself. Have
you encountered that outside of bowling?
S6 (07:53):
Very much so. I keep saying my able body, but
with the people that can see there seems to be.
The general consensus is that people are either NZ or
they can't see. There's no degrees of various other oddly
totally blind, but they can see.
S2 (08:06):
So in realising that we have these community misconceptions. What
advice would you give for people who are low vision
who are just beginning to deal with these misconceptions? What
are some any any tricks of the trade that you've
learned to cope with that?
S6 (08:21):
Well, a lot of it, you just learn naturally, you
do what your eyesight will allow you to do. You know,
reading papers to start with, like I said, it has
gone out the door because I just can't read for
print anymore. So it's a matter now that I watch
the news on TV, even the TV I do. I
sort of started to get bigger and bigger TVs, and
I'd start moving the chair closer and closer and closer
(08:42):
to the screen because I couldn't read the print that
was on the TV. So I go out and get
a bigger telly. So now I've got a really big
telly and the take goes back again. And I know
that when my eyesight starts to fail a bit more again,
the chair will start moving closer and closer to the telly.
So I don't have time to go back to the
time interest and get my eyes check again.
S2 (09:03):
And have you found, you know, when people have said
that you're quote, not blind enough, have you found that
talking to them about your low vision and explaining it
to them?
S6 (09:12):
Has that helped in bowls, for example, their sport of
classifications of blindness? You basically go from here legally blind
after you're totally blind and there's a couple of classifications
in the middle of it. So I like to explain
the four different classifications just to educate people because unless
it affects them directly, they just don't know.
S2 (09:29):
Tony, thank you so much for joining us. I think
your words will really resonate with a lot of people
in the same situation.
S6 (09:35):
Thank you. If I may say to people that are
losing their sight, don't let it get you down. Learn
to deal with what you've got. Use what you've got.
Don't think what you've lost what you still have.
S2 (09:48):
We had so many people we wanted to bring on
to talk about this, that we're changing up a bit
and devoting the rest of the program to bringing together
a panel of guests who are vision to share their
experiences and strategies. First on the panel is Michael Linky,
now a general manager at Vision Australia. Michael has forged
a career in the sighted world, often feeling that he
(10:09):
is not blind enough and often stuck on a diet
of markets because that's a menu he knows. Michael, we're
going to ask you more about that later. And joining
Michael is Andrew Moffat. Andrew is a mediator and academic
at Melbourne Law School. Legally blind in the UK, Andrew
has lived with low vision from birth and only since
he joined the Board of Vision Australia and now as
(10:30):
chair as he becomes slightly more comfortable talking about it. Welcome, Andrew.
S4 (10:34):
Yeah, thanks for asking me to join in today.
S2 (10:35):
We are delighted to welcome back Samantha Hardie as a
Service Connect officer. She performs a vital role connecting people
with support and services. Samantha is herself flirtation and sometimes
came new to welcome everyone. Maybe we'll start with a
question to all of you. Do you think that most
people understand that there is a spectrum of vision loss? Michael,
(10:57):
maybe we start with you.
S4 (10:58):
From my experience, Polly, I'd say no. People think that
we put braille on something, and anyone who has a
vision impairment can read braille. You've got that spectrum of
people who are totally blind. Some do. Some don't read
braille through to people like the three of us here
today who have varying different types of eyesight in different
conditions and different circumstances. I don't think there is a
broad understanding in the whole community that there is this
(11:19):
spectrum of people with limited vision all the way up
to total blindness. So my take on this question really
is either I look incredibly stupid or people don't understand
this spectrum because the number of times people say, Do
you know, mate, possibly you should consider getting glasses. I mean,
I must look really, really thick because it feels to
(11:39):
me that that would have been probably Plan A. If
it was fixable like that.
S2 (11:44):
Andrew, how does that make you feel normally cross?
S4 (11:47):
But I check myself quite quickly because I think actually
demonstrated that one of the two of the people in
the discussion is stupid, and it's probably not me.
S2 (11:54):
Samantha, how about you?
S7 (11:56):
I would agree with the other two and also just
say 100 percent. I agree that people don't get that.
There's a spectrum. It's like you're blind or your sighted
and there's nothing in between. And I think that's why
it's so confusing when when you're someone that say might
be using a cane but has some vision, you might
be some sort of strange fraud. Like maybe I go
(12:17):
around using a cane for fun or something. I don't know.
It's very strange, and it's hard to deal with because
you feel like you either have to explain yourself all
the time or you somehow you have to pretend that
maybe you're blind and then you are just to get
things done.
S2 (12:33):
Samantha, you mentioned feeling the need sometimes to pretend to
be almost more blind than you are feeling like a
little bit of a fraud sometimes. Do you think there's
pressure to conform to an idea of blindness?
S7 (12:49):
I would say both, depending on the day. Some days
I really like to defy it, but it does take
more energy and more effort to do that, and you
do get more of a push back. So on other
days when I'm not feeling up for that, it's a
strange sort of dance to be out in the world
using your cane. And what happens with me is that
(13:09):
I can see people's reactions to the cane and they'll
make faces at me, or some do tears and jump
over the cane or
S2 (13:17):
or so
S5 (13:18):
weird,
S7 (13:19):
weird things. And it's very strange. It's good to point
out that if someone does break your cane when you're
out and about and you have really low vision, you
might not be able to get home very easily.
S4 (13:29):
And we've all seen the meme of people with their
iPhones in one hand using a cane in the other,
which is the future that some people have predicted. And
I notice that a lot. I'm a sometimes cane user
like Samantha, and people will bump into you on their
phone and look at you thinking you're the stupid one
until they see the kind of go or hang on
a sec. Maybe I'm the stupid one. And yes, you
shouldn't be using your mobile phone as you're walking down
(13:50):
the street, are you?
S7 (13:51):
Well, I was up until a couple of months ago
living in the CBD in Melbourne, very, very busy and
under non-COVID times and just trying to navigate with people
on their phones and assuming that the person in front
of them will get out of their way is really challenging.
And then often they would sort of look at you
with surprise when when you bump into them, like, what?
(14:11):
What are you doing?
S2 (14:12):
And that's a really interesting point. And COVID and the
whole kind of social or physical distancing as it technically is,
has that brought any specific problems because there's a lot
of assumptions that you're able to see where people are
1.5 metres away and you're able to look sort of
through perspex screens and new things from a distance? Has
that caused you additional problems over the last 18 months?
S7 (14:34):
It's tricky for me to use the the COVID sign
in app, I think with the technology that I use.
So that's been a challenge to explain to people that
I have to sign in or off, and I have
to give them my details rather than sign some. Thing,
so that's been really challenging.
S4 (14:50):
I look I'll put a vote in for one positive
aspect of COVID with some as restaurants reopen lots of
the move to online menus. And that's really good because
a normal menu, I mean, you know, typical restaurant, you know,
especially at night time, romantic dim lighting, what have you
and really small writing. And I'm terrified that I'm going
to end up inadvertently buying the expensive wine or order
(15:10):
or the dish with cauliflower on it. But but but
quite often now because of, you know, sanitation reasons, then
I can look at the zap, zap the menu up
and then pinch it up and read it much more
easily on my phone. So there's been some positives in
that respect.
S7 (15:25):
Speaking of menus, Michael, you
S2 (15:28):
have said off air that you that sometimes you don't
want the next generation of kids to be always having
to go to matches because they don't want to have
to go across the road and ask what's on the menu?
What held you back from asking? And what would be
some advice for someone who might want to try out
something new? Like, I don't know, Nando's roll it. I mean,
there's so many places. I mean, Mac is great, isn't it?
S4 (15:50):
On July, Mac as I enjoy a bit of bit
of Nando's these days as well, but more so in
my younger days when I wasn't a cane user and
the reaction I'd get in a restaurant or a takeaway
food place when you said, I can't see the menu,
can you eat it and they look at you as
if you hadn't been to school, you hadn't done reading,
writing and arithmetic, and you couldn't be bothered reading the
menu and they had to stand there and read this menu, too.
(16:10):
And then you'd explain about your eyesight and they look
at you and go with no cane. There's no guide, dog. Well,
what I started doing is once you learn a menu,
you think, Well, you know, as a teenager growing up,
it's just much easier to go into Mac because I
know it's there. I'm going to be back on Sunday.
You find yourself just going to those places, you know,
and routine is is really important. One of the strategies
that I've used over my life is that routine. So
(16:32):
as negative as that, images of just going to McDonald's
all the time with limited eyesight. Once you've worked out
a routine, it becomes very easy and travel is one
of those things or getting from from place to place
B is one of those things that you can do
when you can use that. But in that scenario, it's
very bad. And I don't want kids today being fearful
because my experience now later in life is that once
(16:55):
you explain your situation, most people are willing or able
to obviously able to help. But they're sometimes also embarrassed
that they didn't notice or they weren't willing to help
initially and don't be be destined to a lifetime of
eating Macca's as delicious.
S2 (17:10):
And this is just for the podcast. But tell me, Michael,
when you explain to people and they get all embarrassed,
do you get a free McFlurry out of it?
S4 (17:18):
Thought I had an experience on an airplane with my car?
And actually it was a flight from Brisbane recently and
the gentleman was sitting in my seat and I had
the window seat and he looked at me and said, Well,
you're blind mate, just to sit in the aisle seat.
And I said, No, no, no, no, I want to
look out of the window. So I get the odd
window seat from from time to time. But I've never
had an free McFlurry from McDonald's. Maybe I need to
(17:38):
ask one.
S2 (17:39):
Isn't it strange? You can really baffle people when I'm
going for a walk around college, presented mail when people
are like, Oh, where are you going in circles? You
need help. I said, No, no, no, I'm just taking
in the scenery. It baffles those who really know what
to do.
S4 (17:51):
Well, this guy had no idea. He jumped out of
his seat quick, smart and moved across to the aisle
seat and allowed me to sit in the window seat
and I progressed to stare out the window. There was
an eight p.m. flight, so it was dark as well.
S2 (18:02):
I want that little bottle. Well, Michael, I'm going to
completely undercut your message. Sorry, because I'd love to hear
Andrew's story where I think you took a more confrontational
approach in a pub that maybe didn't have quite such
a positive outcome for you.
S4 (18:16):
I happened to be in a pub in London. I
really love English beer, and it's invariably better with the
right flavour of crisps. But you know, unfortunately that's not
been standardised. So I'm there and there's lots of crisp packets,
but they're kind of, you know, behind and I couldn't
see them. And I think probably realistically, this was before smartphones,
because what I do now is pull my phone out,
kind of take a sneaky picture, pinch it up and
(18:38):
work it out that way. You know, I did. The
only other thing I could do, you know, find a
better place and can I? Can you tell me what
crisps you have? Any kind of turned around kind of
waved his arm with an expansive gesture and said, They're there, mate,
are you blind? Ordinarily, you know, I draw it. But
as it happens, I had fairly recently been signed up
as a registered blind person by the City of Westminster,
(18:58):
and I had this blind person's card, which I was
intending to pretend didn't exist. But I thought, No, this
is I'm standing in front of an open goal here, so.
So I said, funnily enough, mate, yes, which is exactly
why I asked you. So I pulled out my card anyway.
He looked suitably ashamed, as you might expect, and I
thought this feels like a win. It was a completely
pyrrhic victory because he was so embarrassed that he couldn't
(19:20):
make eye contact with me for the rest of the night.
I could have caught fire in front of the bar.
He would have not looked at me so. And not
only did I after that struggle with Chris, but I
couldn't even get my beer refilled, so I've been somewhat
more circumspect since then. I used the cane from time
to time and it's sporadic use. I strategically use it
(19:42):
now when I know I'm going to encounter a situation
that will require me talking to someone yesterday. When I
was flying from the airport, I left my face mask
in the cabin and I walked into the airport without
a face mask and I thought, Oh jeez, I'm going
to look a bit stupid here. But I grabbed McCain
and I wandered over to the Qantas counter and said,
I've lost my face mask and it was a happy cheer.
Here you go. Do you need any help putting the
(20:02):
face mask on? And I don't know whether I would
have got a similar response had I not had a cane.
We need to use the tools when they're available as in,
you know, when you go into a shop not necessarily
asking for for Christmas, but looking for chocolate or breakfast
cereal or whatever it is in a local shop. Getting
my phone out to read all the labels. But then
people look at you again because the phone's an inch
from my nose and the phone is an inch from
(20:22):
the the packet of food that I'm looking at to
try to work out what I'm buying. So it's not
always obvious. And I think with some other disabilities, there
is that obvious miss of an obvious one is a wheelchair.
It is immediately obvious that the person either can't walk
or has difficulty walking where blindness and other sensory disabilities.
It's not immediately obvious, and the tools that we use
(20:44):
are varied to some of those tools a portable summer
in the workplace somewhere at home. There's a range of
tools that we can use, and they're not always obvious
to the third party walking on. So and I don't
think people invariably want to wear a badge or a
hat saying, Hey, I'm vision impaired or a T-shirt saying
I'm vision impaired. But that may actually be the solution.
S2 (21:02):
Who knows a whole range of merchandise? Hey, I'm vision impaired. Yeah,
but
S4 (21:07):
if I can jump in on this one, that's, you know,
I'm kind of listening to this and almost feeling slightly guilty.
But I'm going across this panel. I think I've got
the least bad eyesight mine slightly better than Michael's. Not much,
and I think my eyesight is probably materially better than Samantha's,
I would guess. I don't know in terms of acuity numbers,
but as an observation that seems to be the case,
I'm feeling guilty because I'm thinking, Well, you know, maybe
(21:28):
I'm letting down the kind of, you know, community by
not evidently signifying my low vision all the time. But honestly,
my major strategy is to be selective as to let
people know I have low vision. And, you know, in
my day job, very often people hand me, you know,
sheets of paper printed often and in probably small font
because they only have an A4 printer. So they hit
(21:48):
they fit all columns to page button on Excel. And
it's a question for me then to us, OK, do
I then pull out one of the very many range
of magnifies that I have in my bag? Or do
I say, Look, just talk me through it, give me the,
you know, give me the key points. And it's a
it's a it's a decision that I actively make all
the time. So, you know, to an extent, I think
I'm quite situational as to whether I disclose or not.
(22:11):
If I do, I do. And as Michael says, you know,
if I'm in the supermarket, if I'm reading something, it's
pretty obvious. But in a professional context, I may not
want it to be obvious. In which case I may
find a way of not reading things and, you know,
finding other ways around them if I can.
S2 (22:24):
And Samantha, you mentioned that you use a cane. Is
there anything else that really helps you?
S7 (22:29):
I agree with everything everyone else is saying. I'm sort
of in two minds that I tend to switch between
not really wanting to let people know that I have
vision impairment. And it's not wouldn't be clear to anyone
that was observing me, probably in a public situation to
using a cane and maybe a mobile phone that's speaking
instructions to me or something, which makes it more obvious.
(22:51):
And I have this conversation with clients a lot as well,
where they they'll often opt to take up an ID
cane to make it easier for them to be out
in public, for instance, to go into a shopping mall
or to get public transport. And at that point, for them,
it may not be that they necessarily need a full
mobility cane, but the cane just helps them to feel
(23:11):
more safe in the community, with people knowing that their
vision impaired.
S2 (23:15):
Is there any sense of a hesitancy about accepting an
ID cane? Because it is, I guess, kind of a
physical demonstration of accepting your low vision?
S7 (23:25):
I think the hazard to the hesitancy is around people's
reaction to the cane once you bring it out, more
so than people accepting whether or not they need one
because the cane isn't doesn't really give you very much information.
So it's really just, as the name implies, to let
other people know that you have a vision impairment. But
I think people can really react to it quite strongly.
(23:47):
So it can be a bit confronting when you first
bring it out and all of a sudden, you know,
people are reacting.
S4 (23:53):
That's the thing with the cane. It's intermittent use where
a directional cane or mobility cane is used all the
time and I'd cane and I use my I.D. can
win the circumstance permit. So if I go to a
game of football and there's a big crowd around, I
don't feel comfortable in the big crowd. I'm not going
to find the stairs or I'm not going to see
the barriers in the bollards in your way because there's
a big crowd there. So I get the cane out.
(24:14):
So people are aware that I'm the one with the
vision impairment and they should take it out of my
way because if I bump into them, it's not my fault.
It's probably therefore, I think that situational use and then
people will look at you and go, Well, you had
a cane out 10 minutes ago. Now you don't have
one out or you're sitting at the football and you're
watching the football through a pair of binoculars like everybody else.
You clearly can see, so are you a fraud? And
(24:35):
I think that that's the issue that that some users have.
With that I'd cane because it's in and out of
your bag all the time.
S7 (24:41):
I often wonder about that if if, say, for instance,
someone is commuting with me to work and they. See,
someday say you have my cane and some days I
don't know whether they're thinking to themselves what is going
on here.
S4 (24:53):
Like, she's had a heavy night last night, so you
shouldn't worry today.
S5 (24:57):
I thought she was blind and now she's not blind.
S2 (25:00):
It's a miracle. Are there any other tips and tricks
you've come up with, either helping people understand your situation
or slipping past
S7 (25:09):
it these days? I have an abbreviated version, which would
be just to say to someone, I have no vision,
I have some science. But maybe if you could just
tell me what's on the border, that's really all I need.
I find if I say something like that, it's sort
of without going into much more detail than that. It
narrows it down.
S4 (25:26):
The Boston airport, I notified that I was visually impaired
and I needed assistance from gate to gate because I've
never been to Boston before, and the assistance it turned
up was a wheelchair and the gentleman said, I'm here
to assist you. And I looked at him. I said, Mate,
it's the eyes that don't work. The legs are fine.
He's just walking up to the gate and I walk
with him with the wheelchair. So yeah, sometimes when you
ask for that assistance, people aren't fully aware of what
(25:46):
assistance you need. I think Samantha's strategy, they're being specific
about what help you need. I need the time table
read or I need directions. If you give me a
left right 50 meters, give me some directions I'm okay
to to locate that. And if you struggle like me
to even acknowledge that you have any eyesight issues, if
you can avoid doing that, I mean, quite often you
don't need to. So I mean, if you go to
(26:07):
the restaurant classically, you know, you can talk about the specials,
you know, you can you suggest a wine that goes
well with that you never even need to see a
wine list. You know, you go to museums. I happened
to be visiting my old university. There's a new museum
that's just appeared. And, you know, I ask them to
explain to me what the things are. So, you know,
I didn't need to be able to demonstrate that I
couldn't read the signs or anything of that nature. So,
(26:28):
so quite often, you know, if whether you choose to
disclose that you've got a visual impairment or not. Lots
of people are very willing to communicate verbally with you.
If you ask them, actually, then your motivation for doing
that doesn't ever need to be disclosed. If you don't
want it to be getting up close to the paintings
at museums, sometimes sometimes Andrew alert security that you might
true you might be a thief or you are visually impaired.
S7 (26:47):
Did that indicate if you're going to try and see
the plaque suddenly found?
S4 (26:52):
So that that's that's definitely true. But I do remember
once going to an impressionist museum in an exhibition in London,
it was one of those ones where there were a
million people going every day and you had to get
tickets and you had a two and a half minute
window to see a thousand paintings and. And everyone said,
you know, you can only really appreciate it if you're
standing really far back. And I thought, Well, I don't
have that problem.
S2 (27:11):
Happy viewing.
S4 (27:14):
I got close to Starry Night in the museum in
New York once and for security guards came rushing over
and I waved my kind of my way. Oh, it's okay. Okay, cool.
Don't breathe on it.
S2 (27:23):
They say I've been known to pot crowds with my cane.
They they just scatter. They're terrified of it. I don't
know what they think is going to happen, but
S7 (27:33):
apparently they're it's a very terrifying thing
S2 (27:35):
that can be
S4 (27:37):
their handy weapon. Sometimes Typekit things really are.
S2 (27:40):
I don't know how many bus drivers I've whacked around
the ankles with my cane, but there are few. And
how many of those times have been accidental test? Not many,
not many, I have to tell you. So our final
question will segway us quite nicely into our next episode,
which is on community and identity? I'll throw this open
to anyone who wants to jump in first. And the
(28:01):
question is, how connected do you feel as someone who
has low vision with the community who's totally blind?
S4 (28:07):
I feel very connected. I've been my vision, my whole life,
and I've played blind sports and vision impaired sports. A
number of my friends today are from that and their
low vision, as well as totally blind and obviously working
for a blindness agency such as Vision Australia, who does
a fantastic job in the community. There is significant connectedness
with people here. Started 50 per cent of our staff,
(28:27):
a low vision or totally blind. So I feel connected
with the community, but I think I need to get
McCain out more and get off McDonald's.
S2 (28:36):
Samantha, how about you?
S7 (28:37):
I think I would answer that by saying I feel
as connected as I want to be. I don't think
I completely identify, you know, my whole personality as being
a vision impaired person. I'm many things, so I think
I feel as connected as I like to be, which
is fairly connected. But it's not my entire identity.
S2 (28:56):
And Andrew, I'm
S4 (28:57):
going to have to answer this in the hope that
nobody actually from Vision Australia listens to this. And I
think that type is probably unrealistic. Given my role as chair.
I'm connected with the organization, the blindness community, because I
was asked to take a governance role here. So that
does give me a connection with the blindness community. But
as much as as a teenager, I was a client
of the low vision clinic in Kooyong. So I have,
(29:19):
in fact, as a teenager, been a client. But for me, yes,
my eyesight has been what it is stable since birth,
so I haven't needed, I suppose, to be part of
the blindness community at all. And I'm very aware in reality,
and I have this discussion with Vision Australia's deputy chair,
Bill Jolley, who's a mathematician, let's say, you know, statistically, Bill,
I'm told I've got 15 per cent eyesight, but 100
(29:41):
per cent I'm relying on vision. I live in a
visual world. You know, I look at things now I'm. Questionably,
I use my hearing, I rely on my hearing more
than I would if my eyesight were perfect. No doubt
about that, but for the most part, I feel the
way I interact with the world around me is much
closer to the people with 100 percent eyesight than the
people with zero. I use things to fill in the
(30:02):
bit that I don't have. But so, so consequently. I mean,
I'm very engaged. I've got, of course, a huge personal
mission to help blind people, and I'm in awe of
how people who can't see anything at all interact with
the world. But honestly, I don't think that my low
vision gives me any material insight into the extraordinary way
people live if they can't see it all. I really don't.
(30:25):
I'd love to say something different, but I think that's
my personal truth.
S2 (30:29):
When we've talked about kind of, I guess, people understanding
low vision, it's kind of been most of the answers
have been around from a sighted perspective. Do you think
people who are completely blind understand what it's like to
be low vision?
S4 (30:41):
I don't see how they can. I think I've got
a number of totally blind friends who have been blind
since birth and explaining colour to them. I can see color,
I can see blue, I can see pink. I'm not
very good at matching colors and my wife helps in
that regard. I don't think that's got anything to do
with sight. I think that's a lot to do with taste.
I'd rather go out and look like Ronald McDonald and
some days. But yeah, how do you describe color to
(31:04):
someone who has no sight? As Andrew said, We live
in a sighted world, so I think that is difficult
to do. So, yeah, I think it's a very hard
thing to do and we can't imagine because that's what
people say. Just close your eyes and you can imagine
what it's like to be born where you can't because
you can visualize a tree, a bird, a car, a color,
a shape with someone who's been blind since birth cannot
(31:25):
visualize a color or a bird or a shape in
that other than the tactile experience that they've had that
they've learned through their hands, but they haven't had the
advantage of visually seeing that in a three dimensional space.
S2 (31:36):
Samantha, what about you?
S7 (31:37):
I'm going to say something maybe slightly different here. Well,
I think what I'm really interested in around this topic
is not so much. Always the same question is what
can't people see and what can't they do? But how
do people who are blind or vision impaired experience the
world differently, like sometimes some of the things they experience
are quite wonderful and quite diverse, and I find that
(32:00):
really interesting.
S4 (32:01):
Something interesting that Samantha just said around experiencing the world different.
I'm a photographer and people look at me sometimes sideways
when I go. You're a photographer. Hang on. You can't
see what's going on. And I've got nice camera gear
and I take photos, but I take those photos because
I can't experience the world as my sighted counterparts can.
My wife can stand there and look at the Empire
State Building, and she can see the detail of the architecture.
(32:23):
And I love architecture. I'm very interested in architecture. She
can see all that and I can't see it. It's
just a blurry object, you know, towering in front of me.
So I take photos of that and then later on,
review those photos on a large screen computer and zoom
them up. And, you know, have a look at them
and understand the detail. Then I can have a conversation
with my wife on an equal footing. Did you see
this carved stone? Did you see that there was a
(32:43):
plaque here on the fourth floor with a testament to
this person? Or did you see the window dressing in
this window? She can see all that in the experience
that she had during the day. I don't see that too.
Later on in the afternoon, when I'm reviewing the photos
or the next day and you know, I went to
all the rue recently and everybody standing in, wow, look
at them is wrong. It's fantastic. And I'm going where
where they is right in front of you. You can
see this, this massive rock. And it's only when I
(33:05):
took photos that I started to understand the textures and
the colors and how wonderful all the room is as
a as a monolith to have a look at. So
I think what tested there, what Samantha said is just
right on the money, right on the money. I'm one
of the things that I think we need to do
if we're going to be in a with limited vision
in the world. We're making kind of educated guesses about
(33:28):
what something is or who somebody is. You know, that
person kind of looks like it may well be John
or Jane, that restaurant that place, what have you. That
car looks like it's probably a taxi, so I'm going
to put my arm out whatever it might be. And
you know what? Quite often those educated guesses are wrong,
and I'm really sorry, Jane, you. I'm really sorry. You
(33:50):
look like somebody. I know we do that. I mean,
that's inevitable. You either sit tight until you've got certainty,
but you withdraw yourself from the world or you, you
kind of muddle through. But inevitably you make lots of
mistakes on the way. And when you've got low vision
and it's not obvious, I mean, if you blind people or,
you know, cut you some slack, I suspect. But if
you don't look like you've got a particular impairment, then
(34:11):
those mistakes people assume you're an idiot. It takes some time.
I mean, you need to have a fairly, I think,
thick skin because you will make lots of those mistakes
and you look like a bit foolish sometimes. But but
I think people should acknowledge that because it's either that or,
as I say, just take yourself onto the sidelines for
lots of things.
S2 (34:29):
I think that's a fantastic note to end on. Guys,
thank you so much to our wonderful panel.
S4 (34:35):
Thank you. Thanks very much. Thank you.
S2 (34:36):
Thanks, everyone. This has been a wonderful episode about being quote,
not blind enough. So many great insights. And remember, this
podcast can be downloaded. By the Vision Australia website, just
go to Vision Australia dot org and type and nothing's
off limits into the search engine you redirected to our
web page and do subscribe because you don't want to
(34:57):
miss any episodes, and you can view this episode and
early ones or if you prefer. Just tune in to
Vision Australia radio. Next time, we'll be bringing another panel
of guests together to delve further into the question of
identity and community and explore the tricky topic of disclosure.
But meantime, thank you again to our wonderful guests, and
thank you for joining us for the show where nothing's
(35:17):
off limits.
S1 (35:23):
That was nothing's off limits. Made with the support of
efficient Australia and the NDIS information linkages and capacity building grant.
Learn more about our radio and podcast offerings by visiting V.J. Radio,
dot org and access all there is to know about
our range of client services via our website. Vision Australia
(35:44):
dot org. We thank everyone who participated in this episode,
but especially you for listening today. We rely on your support,
so please share this podcast with just one person today
and brighten our day or rate us on your preferred
podcast platform. Bye for now.
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