RSBC Unseen

RSBC Unseen Podcast | It's not Us, It's You (Part Two) | S.05 E.06

• Royal Society For Blind Children • Season 5 • Episode 6

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Back in February we did a two day podcasting workshop with the  @Roundhouse . In it, a bunch of us came up with different podcast ideas and recorded them together in their studios. 
 
In part two we talk about white canes and misconceptions we face!
 
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Everyone:

It's not us, it's you.

Jacob:

How would you feel if you couldn't get from your house to work without any assistance?

Ember:

Welcome to It's Not Us, it's you.

Scarlett:

We're a group of blind and partially sighted people

Nailah:

and we want to share with you the reality of living our lives independently.

Jacob:

First up, canes

Nailah:

Is that Bedazzled Cane?

Scarlett:

Yeah

Nailah:

Why would you ever bedazzle your cane?

Scarlett:

Because I can? It's literally a mobility aid, not a disco ball, and I want to customise it, though.

Nailah:

Why would you want yourself to stand out more when you already stand out?

Scarlett:

The second I walk into any room, I stand out. Few gems are not changing that.

Nailah:

It's distracting, though

Scarlett:

To who?

Nailah:

People

Scarlett:

The same people who stare at me either way?

Nailah:

That's not the point.

Scarlett:

If I have to carry a mobility aid around that makes me different to everyone else, it might as well be made for my own personality.

Nailah:

But you're doing too much. It's made that way for a reason.

Scarlett:

Hear me out. Every time I walk into a room, people stare and whisper just because of my mobility aid, because it's just a plain white cane, I decided to customise it, and suddenly the stares and the whispers turned into why would you even do that, it's with me 24/7 it's part of me, so maybe it should be a fashion accessory.

Juliette Parfitt:

So Scarlett and Nailah are highlighting something very interesting in that skit, and it's something I think is really fun to talk about, about customising our canes, so everyone here, I think, has a customised cane. So I'm going to throw it over to Ember. Can you describe your cane to us and how you've customised it?

Ember:

I've decorated my cane by adding sparkly stickers in different colours of the rainbow. Canes are medical devices, but I don't see the problem with decorating them to match your personality, as you do have to carry them around all the time.

Juliette Parfitt:

Does it make you feel like more confident and like happy to have it on you?

Ember:

Yeah, I get a lot more compliments about my cane now that it's decorate.

Juliette Parfitt:

I like yours too, because it's really tactile. Ember let me have a feel of it yesterday, and it was like really bumpy. I was like, has your cane got a name? I know some people here have got names.

Ember:

My cane doesn't have a name. It needs a name.

Juliette Parfitt:

All right, we'll have a brainstorm of that. Nailah, can you describe your cane to us?

Nailah:

So, my cane.. I haven't fully done it yet, so I've got the five rods of the cane, and my last one has got bedazzled. It's red at the moment, but I'm thinking of going rose gold. I change every few months, yeah.

Juliette Parfitt:

Now what? You stick like jewels and stuff on it, so it's like sparkly.

Nailah:

Yeah, so a bit.. it's what you.. it's rhinestones. So kids will know this when they stick stuff in thicker books. Adults know it when they're doing art or anything, yeah.

Juliette Parfitt:

So also like tactile as well.

Nailah:

Yeah, it's very tactile

Juliette Parfitt:

And also like reflective in the dark. So you know what it is, also practical.

Scarlett:

Yeah

Juliette Parfitt:

And has yours got a name?

Nailah:

Yes, mine has a name. It's quite funny, and it's after football. Harry Kane

Juliette Parfitt:

Harry Kane, that's genius,

Scarlett:

Fabulous.

Juliette Parfitt:

Scarlett, tell us about your cane.

Scarlett:

My cane is bedazzled as well. It's like silver rhinestones. I have had a few different colours. I had red for Christmas, but it's very tactile, and I just literally just got like strips off Amazon, and they go around the cane, so it's quite easy to do, and the name of my cane. Well, we've had two different ones, so we have, so we've got Brain the Cane as a general, and then during Christmas I made my cane a candy cane, so we called it Candy Cane.

Juliette Parfitt:

I love that you go seasonal, I love that. Yeah, that's pretty new, Jacob. You haven't necessarily like blinged up your cane, but you have like multi-purpose canes for different things, don't you? Can you tell us about that?

Jacob:

Yeah, so I can't bring the cane that I use for like certain terrains because it's more heavy duty, but because I do the Duke of Edinburgh Award, I've got this cane, which allows me to lean on it a bit, so then, like, to stable your balance and stuff like that, because if you use, well, most of us here uses a lighter cane, and because you use a light cane, they can become a bit bent, that becomes a problem. That's why I teamed up with the RNIB to, yeah, produce a more heavier duty cane

Juliette Parfitt:

Some rugged terrain cane.

Jacob:

Yes

Juliette Parfitt:

Love it. Has it got a name?

Jacob:

So the rugged terrain cane thing, I just called it R2 D2 for some odd reason.

Juliette Parfitt:

I love that when you use it out and about, do you make funny noises? That's what-

Jacob:

It can do. Yeah.

Juliette Parfitt:

I love that. So, like, when you customise your canes, do you feel like it kind of gives you a bit more ownership over, like, your disability or needing to use a mobility aid?

Scarlett:

I would say, yeah, because before I used a cane, it was kind of more just a cane, now it's, it kind of breaks the stigma around it, like, if I'm getting, like, assistance, I get people complimenting, or when I walk onto a train, someone go,'Oh my god, I love your cane.' Or I've had a few blind people actually come up to me in public and ask where I've got my cane from and how I've done it. And then we also had, when I went to something called Winter Wishes, we had a little child come up to us with her mum, and she come up, and she was complimenting our canes, and she was saying about how cute they are, and all this, and asking how we did it, because obviously her little child's starting to lose her vision and using one, so I think it definitely comes with a lot of compliments, and more breaking the stigma, like, yeah, she got a picture of us, and it just breaks the stigma around it, because people talk about how bedazzled it is, instead of, oh, it's, it's just a cane, like how people think of canes

Juliette Parfitt:

That's awesome. Yeah, nice conversation starter. It just takes you down a different route, yeah. You don't necessarily want the normal, slightly strange, intrusive questions, and I know Nailah and Scarlett, we were talking the other day, and you guys were joking around, saying about using your canes as lightsabers.

Scarlett:

Yeah, you can actually get lightsaber canes. I don't know that makes different. It does different colours. We saw a blind creator showing it off because they did it for Halloween

Nailah:

$100

Scarlett:

Yeah, it's really expensive, but it's just quite funny. But I've had some weird comments about my cane,

Nailah:

But I tell kids, so this is really bad. When a kid asks me what my cane is, I say it's a lightsaber, because in the night, this is quite like you agree, because, yeah, in the night when we're walking, it's dark, and like it glows, photo and flash, it glows like a lightsaber. Yeah, yeah

Scarlett:

I've had some weird names for my cane. People, people thought it's like a phone stand. Yes, I've had someone ask me if using a cane actually lets me see, like if the cane gives me my vision back

Nailah:

I had someone ask, you know, your cane tip?

Scarlett:

yeah?

Nailah:

Someone asked if there was a camera in there, and I was just walking around.

Juliette Parfitt:

Oh my goodness. Well, I mean, I guess at least people have no, and the people that ask that have noticed, I suppose.

Scarlett:

Yeah

Nailah:

When you're out and about, see if someone's can't be dazzled, and go and talk to them.

Juliette Parfitt:

Thanks, Nailah

Everyone:

Stereotypes

Scarlett:

Why are you on your phone? Aren't you supposed to be blind?

Nailah:

Huh? Accessible tech exists, you know.

Scarlett:

Accessible, what now?

Nailah:

Blind people use technology, there's screen readers, voice commanders, and magnification

Scarlett:

No, blind people can't do stuff

Nailah:

Can't do stuff.?

Scarlett:

Yeah, don't they need help with everything?

Nailah:

Blindness is a spectrum. Some people see nothing, some see light, some see shapes. It's not one size fits all.

Scarlett:

Whatever, you're just faking it

Nailah:

Faking what exactly?

Scarlett:

You don't look blind, you can hear, you can walk around, use your phone. Blind people just see black and stay at home or something.

Nailah:

Wow, that's impressively wrong.

Scarlett:

So, you're saying you can do everything I can do,

Nailah:

Pretty much just differently.

Scarlett:

Okay, but you don't look-

Nailah:

Uhm, blind people to have a look.

Scarlett:

I didn't know that.

Nailah:

You could have asked instead of assuming.

Background electronic voice:

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Juliette Parfitt:

Some more great points, they're made by Nailah and Scarlett, and I think when it comes to stereotypes and assumptions and misconceptions about vision impairment and blindness, we could honestly make a whole series about it, but just focusing on this idea of blindness as a spectrum, I want to unpack it a little bit and see what it means to you guys, and also like how it intersects with other disabilities. So, Ember, can you talk to us a little bit about being a visually impaired wheelchair user, and how those things kind of smash into each other and affect your day to day?

Ember:

Yeah, I find that people often a bit confused with how to support someone if they're visually impaired and have other disabilities,

Juliette Parfitt:

So does it change like the kind of support that you might ask for or that you need to receive?

Ember:

Yeah, I just have to be very specific about what support I need as people. I don't use my cane all the time, so it's. Sometimes people aren't aware that I'm visually impaired.

Juliette Parfitt:

So it's kind of like, do you, So, if you say someone meets you and you're not using your cane, and then you bust it out for something, do you find sometimes people almost have to, like, their brains have to catch up with them a little bit? Sometimes they're a bit like they have a reaction to it.

Ember:

Yeah, they're often a bit confused, some of them don't really say much. You can just like tell by their face.

Juliette Parfitt:

Do you think they're like, okay, I'm just not gonna talk about [Yeah] maybe they won't notice! I love that. that's great. So, actually, that's really a great point. Ember is talking about people who don't use their canes all the time, because linking into blindness as a spectrum, not only is that incredibly true, as we all know, but actually thinking about people who don't use their canes all the time, because I have to admit, back in the day, when I could see better, even I thought it wasn't either or, either you used your cane or you didn't, and I then became a person who, for a while, only used their cane in the dark, so I don't know if you guys have any experiences about that that you want to share about, like, yeah, busting that myth slightly.

Scarlett:

Um, well, I've only been using my cane for just under a year now, but I only started using it full time in July, so I think a lot of it is people wrapping their head around suddenly, like someone using a cane, that they're like, well, you've still got vision, like there's a lot of stereotype if people aren't blind, like fully blind, they shouldn't be using a cane. When I personally should have been using a cane longer than before I started using a cane, but I think a lot of people stop, don't use a cane because of the stereotypes that come with using a cane.

Juliette Parfitt:

Do you think it makes you a bit hesitant, and like, makes you nervous?

Scarlett:

Like, I'm a lot better with my cane now, but back when I first started using it, it was such a big thing of, oh my god, what the hell are people gonna think of me, and how are they going to react, and like, and a lot of it is just because you, that's how people act. They've got such big stereotypes around blindness that when you do use a cane, you're not blind enough, or you're too blind for society, like they don't have a mix in the middle of it.

Juliette Parfitt:

Yeah, I think that's really true. Yeah, Jacob, have you had any experiences like that?

Jacob:

So I would say I was using my cane since I was about 12. This was mainly because from when I was 12 and onwards I constantly travelled around London in the busiest times, and obviously, for example, try and get across those bridges when there's like 100 or 1000 of people without a cane is nearly dang impossible.

Juliette Parfitt:

I can imagine quite scary for you as well, and it kind of, I guess, using it. Do you feel like it's helpful for other people to sort of see it and understand what it means? Obviously, people's reactions aren't always perfect, but do you find Jacob that is actually generally quite helpful, just as a symbol, and you know, as an ability aid to help you get about and help people understand?

Jacob:

I feel like, yeah, canes can be helpful, but sometimes I would say the only time that cane doesn't become helpful is if you're carrying multiple bags, because the cane just gets in the way, and it can become a trip hazard.

Juliette Parfitt:

Yes, I understand that. Essentially, using a cane means you're kind of one-armed, [that's the worst part] which is really uninconvenient.

Jacob:

Literally, as soon as you start using your cane, you basically admit to nearly having a trip hazard nearly every day.

Juliette Parfitt:

Yeah, I have been known to fall over my own cane occasionally, although it's maybe my own fault because I'm doing something a bit silly. Nailah, how about you? Like, what's your experience on this?

Nailah:

I've been using my cane for two years, and I just remember when I started the reason I didn't actually use it, I was so anxious about using it before. If I could have been using it for ages, I think it's just this massive stereotype that, for me, is I don't look blind enough for people to think I'm blind, even though in my cane people still think I'm not blind enough, and it's because I do my makeup, I go out myself, and they're just like, oh, but you're not blind, you don't need the cane, or like, if I'm in a familiar environment, so sometimes I use my cane all the time, but like, and sometimes I don't actually have it on me like, if it's just walking around the same room and I've been in it for a while, I won't keep my cane out, I can walk around it with just my hands, and it's like people just have this really big idea that you have to be fully blind to use a cane, or you have to be not independent to use a cane.

Juliette Parfitt:

So, I want us to go around and say one thing each that we want the general public to know about, like either busting a stereotype or about using our canes, like what we've just been talking about. So, one thing that you want the general public to know. So we're gonna go to Scarlett first

Scarlett:

Um, That we're not incapable, we can do stuff. There's adaptions, and there's so much to be able to do everything like there are things that we can't do, but there's always something to help to make it easier.

Juliette Parfitt:

Love it.

Nailah:

I think blindness is a spectrum. Everyone sees something different, everyone can do something different. Some people can do some stuff, some people can't do some stuff. Everyone is different, and everyone has a different life, and people need to understand we're not all the same.

Juliette Parfitt:

Love it. Jacob.

Jacob:

I would say that no matter what part of the blind spectrum you're in, it shouldn't matter, because this is a wide, worldwide community, so like, just accept it.

Juliette Parfitt:

Lovely. Ember.

Ember:

Probably that people in wheelchairs can use canes. We use them a bit differently to everyone else, and we need different training, but it is possible.

Juliette Parfitt:

Amazing, thank you guys for those words of wisdom. Thank you so much for listening to this episode of the RSBC Unseen Podcast. You can catch all our other episodes in all the normal podcast places, plus on the RSBC Youth Voice YouTube channel, where you can also check out our video content. This podcast was made by RSBC Youth Voice in collaboration with Round House, featuring

Scarlett:

Scarlett

Nailah:

Nailah

Jacob:

Jacob

Ember:

Ember.

Nailah:

Thank you so much for listening. Catch you in the next one.