When you don’t feel blind enough

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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 Vision Australia and the NDIS information linkages and capacity building grants, including grants.

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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 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 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 eighty four thousand people in Australia who are blind or have low vision, approximately 10 percent are blind, whereas 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 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?

02:02

S1

Nothing's off limits. With Tess and Polly Polly, have you ever thought you're not blind enough?

02:14

S3

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 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.

02:56

S1

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 where do you fit within the spectrum? It's worked to a disadvantage if I'm trying to get assistance or support from the government where you don't fit into the best 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

03:31

S4

with disabilities to present programs to increase

03:33

S1

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 say it is much worse than mine, and I've had a much tougher time than me, so I really consider myself lucky for the partial sight that I have.

03:55

S5

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 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 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, 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're more 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 another

05:22

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little bundle of Bailey's would really help. You're listening to nothing's off limits. We're tense and poorly produced by Vision Australia radio.

05:33

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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.

05:50

S6

Great to be here from sunny Port Macquarie, which is pouring down rain. Oh no,

05:54

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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?

06:05

S6

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, 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, it stopped. 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 then the right eye. And it was sort of going back and 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.

06:59

S2

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?

07:09

S6

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 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.

07:43

S2

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?

07:52

S6

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 anti or they can't see. There's no degrees of various other oddly totally blind, but they can see.

08:06

S2

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

08:20

S6

cope with that? Well, a lot of it, you just learn naturally, you do what your eyesight will allow you to do. You know, reading papers to with, like I said, has gone out the door because I just can't read for print anymore. So it's the 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 to the screen because I couldn't read the print that was on the TV. So I go out and get a bigger telly, though. 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 in my. I don't have time to go back to the doctor. I'm stressed and get the eyes checked again.

09:03

S2

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?

09:11

S6

Has that helped in bowls, for example, this 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.

09:29

S2

Tony, thank you so much for joining us. I think your words will really resonate with a lot of people in the same situation. Thank you.

09:36

S6

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.

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S2

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 elevation 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 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 chair as he becomes slightly more comfortable talking about it. Welcome, Andrew.

10:34

S4

Yeah, thanks for asking me to join in today.

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S2

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, maybe we start with you.

10:57

S4

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 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 the 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 me that that would have been probably Plan A. If it was fixable like that.

11:44

S2

Andrew, how does that make you feel normally cross?

11:47

S4

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.

11:54

S2

Samantha, how about you?

11:56

S7

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 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.

12:33

S2

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 a pressure to conform to an idea of blindness?

12:49

S7

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 a cane. And what happens with me is that I can see people's reactions to the cane and they'll make faces at me, or some do dares and jump over the cane or or

13:17

S5

so weird,

13:19

S7

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.

13:29

S4

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 the street, are you?

13:51

S7

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? What are you doing?

14:12

S2

And that's a really interesting point. And COVID and the whole kind of social 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?

14:34

S7

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. So that's been really challenging.

14:50

S4

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 out or the dish with cauliflower. 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.

15:24

S7

Speaking of menus, Michael, you

15:28

S2

have said off air that you that sometimes you don't want the next generation of kids to be always having to go to Machias 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 you like? I don't know. Nando's roll it. I mean, there's so many places. I mean, Mac is great, isn't it?

15:50

S4

On July, my Mac because 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. 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 as negative is 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 and 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 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 is delicious,

17:09

S2

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?

17:18

S4

I had an experience of Irvine with my cane. 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 old three McFlurry from McDonald's, so maybe I need to ask one.

17:39

S2

Isn't it strange? You can really baffle people when I'm going for a walk around College Crescent in Melbourne, 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, so you really don't know what to do.

17:51

S4

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.

18:02

S2

I want that with the 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.

18:16

S4

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 work it out that way, you know, I did. The only other thing I could do, you know, provide 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 they're made. 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, 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. And 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 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 ID cane from time to time, and it's sporadic use. I strategically use it 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 cab 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 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 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 myself and the most 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 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 looking on. So and I don't think people invariably want to wear a badge or a hat saying, Hey, I'm visually impaired or a T-shirt saying I'm visually impaired. But that may actually be the solution.

21:02

S2

Who knows a whole range of merchandise? Hey, I'm vision impaired. Yeah, but

21:07

S4

if I can jump in on this one, though, it'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 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 the 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. 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.

22:24

S2

And Samantha, you mentioned that you use a cane. Is there anything else that really helps you?

22:29

S7

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. 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 more safe in the community, with people knowing that their vision impaired.

23:15

S2

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?

23:25

S7

I think the has to decide 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. So it can be a bit confronting when you first bring it out and all of a sudden, you know, people are reacting.

23:53

S4

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'll use my idea 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. 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 situation will 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 hour 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 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.

24:41

S7

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.

24:52

S4

Like, she's had a heavy night last January today.

24:57

S5

I thought she was blind and now she's not blind.

25:00

S2

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 it?

25:10

S7

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.

25:25

S4

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 assistance you need. And 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 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 museum. I happened to be visiting my old university. There's a new museum that's just appeared. And, you know, I asked 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, 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 Andrew alert security that you might interview. You might be a thief or you are visually impaired. Did that indicate

26:48

S7

if you're going to try and see the plaque suddenly found?

26:52

S4

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.

27:11

S2

Be viewing.

27:14

S4

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 OK. Okay, cool. Don't breathe on it.

27:23

S2

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,

27:32

S7

but apparently they're it's a very terrifying thing

27:35

S2

that can be

27:37

S4

their handy weapon.

27:38

S2

Sometimes Typekit things really are. 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? No, 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 question is, how connected do you feel as someone who has low vision with the community who's totally blind?

28:07

S4

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, a low vision or totally blind. So I feel connected with the community about I think I need to get McCain out more and get off McDonald's.

28:36

S2

Samantha, how about you?

28:37

S7

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.

28:56

S2

And Andrew, I'm

28:57

S4

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, 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 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 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. I'd love to say something different, but I think that's my personal truth.

30:29

S2

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?

30:41

S4

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 clothes 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 someday. But yeah, how do you describe color to 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 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.

31:36

S2

Samantha, what about you?

31:37

S7

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 really interesting.

32:01

S4

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, you know, the Empire State Building, and she can see the detail of the architecture. 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 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 and 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 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 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 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 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.

34:29

S2

I think that's a fantastic note to end on. Guys, thank you so much to our wonderful panel.

34:35

S4

Thank you. Thanks very much.

34:36

S2

Thank you. 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 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 off limits.

35:23

S1

That was nothing's off limits. Made with the support of Vision 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 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 write us on your preferred podcast platform. Bye for now.