RSBC Unseen Podcast | Big Sister: Advice to my younger self | S.05 E.04

What advice do you wish you’d had when you were younger?

 Some members of our Sisterhood group shared their pearls of wisdom, and we sat down with Amy and Nyla to chat through them.

The RSBC Sisterhood group meets on Zoom every other Tuesday, you can find out more here:
https://luma.com/adc9oyco?lm_source=embed

Other Useful Links:
Apple Podcasts:
https://podcasts.apple.com/gb/podcast/help-vision/id1830980534

Spotify:
https://open.spotify.com/show/6pktqqiCr3yLuZC3VAftly?si=ZtveQBKLR0GWvjP2Y6mZ7g

YouTube:
https://youtube.com/@help.vision?si=bd9BjZiYFagk4STB

Transcript

Juliette Parfitt: 0:07

Hello and Welcome to the RSBC Unseen podcast. My name is Juliette and I work here at RSBC This week, I'm joined by our Activities Officer Fran and some of the girls from sisterhood. So Fran and guys introduce yourselves and tell us a little bit about what Sisterhood is and what you guys get up to?

Fran: 0:25

Hey, Juliette, thanks so much for having us on this special episode. And yeah, this is a sisterhood special. We're calling it big sister, and that it will become clear why we're calling it that very shortly, but first I'm just going to throw it over to introduce my lovely guests from sisterhood. Amy, do you want to introduce yourself first, and then I'll pass it over to Nyla

Amy: 0:47

Hello, I'm Amy and visually impaired, and I've been part of sisterhood for about, oh, how long has it been about since 2020? 2021?

Fran: 1:00

That sounds about right to me

Amy: 1:02

Yeah, So I lost my vision in 2020 and I joined sisterhood because of that, and I wanted some sort of, like, advice and guidance over my vision and as well as meeting other people my age. So yeah, and I'm, did I mention I'm from Newcastle, and I do podcasts myself called help dot vision underscore. And, yeah,

Fran: 1:32

Thanks Amy! How about you Nyla, would you like to say hello?

Nyla: 1:36

Hi, I'm Nyla. I've been in sisterhood for maybe just over a year. And I live in North London, and to be honest, being at sisterhood has really helped me, like, socialise and make friends with the group.

Fran: 1:56

Totally you guys are both really important parts of sisterhood. That's a really helpful painting of the picture of what sisterhood is all about. And sisterhood is a group which runs every other week online, and we have so many fantastic participants who are a part of it. And some of those participants have sent in pieces of advice that they would have benefited from earlier in their sight loss journey, or earlier in general, if they were already vision impaired. And we're going to discuss some of those pieces of advice. So this is big sister rather than agony on but it's kind of a similar setup. So the first piece of advice we have is from Alyssia and it is around joining social groups and kind of gaining confidence and making friends. So we'll listen to that piece of advice first.

Alyssia: 2:42

Okay, So in terms of making friends, as someone with a vision impairment, one piece of advice that really helped me is by looking at social groups and kind of groups for certain kinds of hobbies and interests. So for example, if you're really into music, you could join a music group. Now, schools, colleges, universities, and just in the local community, there will be groups and social groups available with different themes or about different things. So that way you can really go and meet people with similar interests to yours, which can get the conversation started. And also with groups that meet regularly. You're probably going to be seeing those people on a regular basis, which can help with building friendships and getting to know people. You can also find these kinds of social groups online as well, and there are different social medias that you can use to find these types of groups. I would always recommend, though, if you are going to be doing things online, just be safe. Don't give away your personal information and report anything that looks suspicious.

Fran: 3:47

Okay, so that is Alyssia's piece of advice. What do we make of it guys? What have you found useful in terms of socialising, making friends in school and outside of school?

Nyla: 4:00

So I really liked that advice because, like, at school, we have lunch clubs and for like, different, I guess, interests, like, I go to music because I love music, and I also go to DND club because I love DND and I think going to a group where like, people with the same interest as you, you can really get to know people, and maybe like even feel confident like getting to know people

Fran: 4:33

Totally

Amy: 4:36

Definitely and I agree with that. And there's loads of societies out there in uni as well, especially with like different interests and stuff. It's like running clubs, and even like reading clubs if you're interested in books and stuff like that. And you've also got like clubs outside so you've got like Youth Clubs, depending on how old you are. But like, sometimes you have got to look more once you like, get older, in my experience, so I've looked at like more things not to do with youth clubs, because they're like, mainly dedicated for under sixteens out in my experience, and it's a lot more, like, I wouldn't say difficult, but there's a lot less, unless you go to university or something like for you really, but sisterhood really helps us as well, for being a part of, like, a part of, like, a visual impaired community as well, but because I don't know many, like people who I can, like ask my own age about vision impairment and stuff so kind of, yeah

Fran: 5:53

That's helpful. Amy, that's what I was going to ask. I think probably starting with a hobby. I wonder if it levels the playing field a little bit, and vision impairment becomes less relevant because you all have this shared hobby. So maybe that's kind of one useful way of approaching some social groups. But do you guys find it helpful to have sisterhood as a space where, you know, obviously, it's accessible, because we know about vision impairment, and we're kind of catering to that from the start. Is that something that you guys value in that space to chat amongst each other?

Amy: 6:22

Yeah, definitely, it really helps because of being, like, knowing that everyone's visually impaired, there's no like, sort of judgement, in a way, like everyone sort of struggles with a vision, with their vision, and everyone, sort of like has this is sort of that space to, like, share something that you struggle with without, like sighted people, like, sort of like thinking, Oh, well, how, why do you struggle with that that's like easy in a way, when you might not find it easy, and like you sort of need that, like lived experience, in a way to sort of have that, if that makes sense

Fran: 7:06

Yeah, definitely. Nyla, have you got anything to add?

Nyla: 7:10

I agree with everything that you know she said, like, I really like sisterhood, because, like, she said, there's no judgement. Like, yeah, we're all struggling with visually, with visual impairment

Fran: 7:22

Yeah, I think it's definitely something to kind of not even bond over. It's just a given, and then you don't have to explain, which I think has, yeah, often been useful for new members, knowing that they haven't got to explain themselves, and they haven't got to kind of expect people to not understand things.

Juliette Parfitt: 7:40

Thanks Amy and Nyla for your thoughts so far. Nyla, I want to hear more about DND at some point. You mean you're going to have a chat. So our next bit of advice is around making conversation and interacting with people if you're visually impaired and maybe you don't catch like non verbal cues as easily, and like ways to manage that, so hopefully get some good advice.

Fran: 8:02

Yeah, so our next piece of advice is a typed out message from an anonymous member who says, Since becoming visually impaired, I've been less confident in making and keeping conversations going. And they, in fact, asked chatgpt to help them out with this. The advice that chatgpt gave for making and starting conversations keeping them going, was to answer a question with a short answer, a short detail, and then ask a question back to keep the conversation going. And this person says they've been practising it with safe people such as QTVIs, VI teachers, other trusted adults to gain confidence when chatting with other people. So I'm wondering, guys, do you have any advice? It might be around this specifically keeping conversations going, or maybe just generally, ways that you kind of increase your confidence. It might be chatting to like this comment said, trusted people who you know you can kind of gain a bit of confidence yourself. I'll throw it over to Nyla first

Nyla: 9:00

Um, so I guess my advice would be, and this like some people won't feel as confident, but like, when you meet, when you meet new people, sometimes it's helpful to, like, let them know that your VI and Maybe you struggle with catching, like, non verbal cues, yeah

Fran: 9:25

I think that's a really useful starting point so that you don't have to kind of explain that halfway through a conversation and people know what's going on. What do you reckon Amy?

Amy: 9:34

Yeah, definitely. I agree. So I think just like building your confidence towards the people who you know the most, and people like peers like you don't you haven't spoke to before in your class, maybe. And just like gathering that confidence who knows you're visually impaired, because either like they've seen you walking around with a cane or something like that, gives off that you're visually impaired. And maybe just like, start a conversation with them. And maybe just like, say, like, oh, like, What do you enjoy? What's your interest? And maybe just like, start, like, a conversation up and like, see how that goes. And if it's like, too much for now. Just go back to them, safe people. And then just like, keep on building it up.

Fran: 10:27

I'm wondering about that thing of like, you guys have both said, either introduce the topic of Vi so that people understand or know to expect that, or you mentioned Amy using a cane is kind of a helpful signal. I'm not sure, Juliette, have you experienced, I've seen sometimes people wear a lanyard or something like that to kind of announce it, so that they don't have to necessarily talk about it. But people were kind of aware, is that something you've come across in the past?

Juliette Parfitt: 10:51

Yeah, I do think you're both right about If you're happy and confident to say so just explaining, like, if I met someone, or I was in a big group, I would say, like, hi, by the way, I can't see anything, so like, sorry if I sort of slightly interrupt you, if I don't realise you're about to speak or anything like that. And also, like things, I can use my name so I know you're speaking to me. It's like, it can feel really nerve-wrecking, but I have very rarely had negative outcomes from being open and honest about that. So, yeah, I think that's really good advice. And I do think one of the upsides of using a cane is a lot of people know what that is, and so they're kind of straight away can be like, Ah, she can't see. Reactions, not always perfect, but it's like, it saves a bit of a conversation. So it can have its upsides. No nothing is perfect, but and it can definitely help. And I think having that sort of getting comfortable with explaining your situation as much as you can, it does really go a long way. I think you guys gave some good advice there.

Amy: 11:55

I must say, I, with me losing my sight at like, 14, I'm just thinking of myself right now, and I did struggle with social situations and in like a sort of it makes practice, makes perfect, really, but I didn't want to use cane when I first lost my sight. And I do get it if you don't want to use your cane. And I didn't even want to use a lanyard either. So, like it just had it got to the stage where I had to use a cane. My vision just got too bad. And I just because you worry about the social situation as well, because people, like, sort of might perceive you differently, if that makes sense. And so just like, try to be yourself as well, and don't put too much pressure on yourself either.

Juliette Parfitt: 12:57

That's excellent advice. Definitely agree about not rushing it. You got to feel confident and comfortable, right? And that takes time

Fran: 13:04

Well, and it leads us really nicely onto our next piece of advice that we had from another member. We kind of discussed in one of our sisterhood sessions, any pieces of advice people wanted to offer, and lots of things were around. One building the confidence to use a cane. I think you guys are both cane users, aren't you? [Both:] Yeah, yeah. So we've got some experts in the room here, but one of the pieces of advice was around cane tips and kind of mobility. And whilst, you know, there's no right answer, and you know, to each their own as regards the kind of tech and the equipment they use, we did have some nice reflections from our group members. So this next clip is from some practical advice from Paris.

Paris: 13:48

Hi. This is me, Paris, and I'm here to talk about if I was younger, I would give myself good advice about what type of cane would I use? And now that I'm older, I'm using the right one. It's called the no jab cane, and it's a really good cane Bye.

Fran: 14:19

I'm wondering, after listening to that advice from Paris, if either of you have any tips, tricks, practical advice for navigating life with a VI that could be kind of mobility equipment, or it could be apps or tech that you use anything like that.

Nyla: 14:36

So, so I use a cane, and I really like having the roll on tips, like the ones that roll across the floor and stuff, because, like the other tips, like the marshmallow, like they do jab a lot. So the thing is, at the same time, it's whatever works for you.

Fran: 14:59

One thing. We've talked about a lot is It depends where you live, right? Because you're based in London, and it's a totally different landscape and kind of area being in an urban place to some of our members who are, you know, in more rural environments,

Nyla: 15:13

But it's definitely whatever works for you.

Fran: 15:17

Awesome. Amy, did you have anything else to add.

Amy: 15:21

Well, on the app side of things, thinking about it, I use Bus Times UK a lot, and I find it really useful because I can't say that the actual timetable and the bus stop, and it's like quite accurate as well. So I do recommend that. And also I use Soundscape. I'm pretty sure it's called and it's basically just like a navigation app for somebody who's visually impaired. It's kind of like the Maps app, but it's more accessible again for voiceover and everything like that.

Fran: 16:05

Thanks, guys. That's really helpful. A few practical tips there, and we're kind of moving on to a similar topic. So a while ago, at sisterhood, we we've done Skincare Sessions, we've done self care sessions, we've done yoga and general well being. But one of the funniest sessions we did was our Tech Officer Alex, our accessible tech officer, came to our session and he showed us some apps that can help you apply makeup. So he put lipstick and eyeliner and mascara on during the session for the first time ever, and it was absolutely hilarious. I think he stole these bits of makeup from his wife, who was not all that happy, because they're quite expensive. You missed out Juliette because it was these guys can probably confirm that it was It was chaotic. We've got a piece of advice from Sophie, one of our regulars, who says, As a young VI woman, I struggled with doing my own makeup, an organisation called Sight Life helped me out and gave advice on applying makeup by myself. I now know techniques, and I've learned about skincare. I can now put on makeup myself and go out and about. So I'm wondering how sisterhood, self care and skincare sessions have helped you. And any other might be, resources might be, apps, organisations which have helped you. You guys, I'll throw it over to Amy first, because I think you were talking about an app that you've used before.

Amy: 17:38

Yeah, I've used Estee Lauder app, which I don't think has been out that long, because I remember losing my sight and like if I think it was about a year or two years after it came about, but I think I'm right on that one, but it's really good because it helps, like, so if you say what makeup you want to apply, it's kind of like FaceTime, but with AI, so you've got, like, it telling you so, like, say, if you apply in lipstick, for example, you've got, like, your lipstick in hand and like, it tells you like, where to put it, and it tells you like, if you've missed out, like, a bit on your lip as well or it tells you if you've like, overlapped as well. And it's really good because it tells you what side to like wipe as well, and what size you need to improve, or if your foundation looks blotchy or whatever, and that's really helped me, but I do get my mom to look at my face at the end, just in case I've missed something out. Give you the check with their me makeup not looking good,

Fran: 19:00

That's really as useful reflections. Amy, I'm wondering, Nyla, if you can share some of the things that we've done, more generally, around kind of well being or self care, part of through sisterhood.

Nyla: 19:13

Okay, so we've done, like, yoga exercises. One time, like, before the session, we got sent like a self care package, and it had some really fluffy socks, there was chocolate, there was a face mask, and we used it all in the session, like we had some relaxing music on, and we put our fluffy socks on and our face masks, and we just relaxed. So good.

Fran: 19:45

Yeah, that was one of my favourites as well. I felt like Santa basically sending out all these little packages to everyone before the session. Yeah, it's nice to just have, like, dedicated space once a fortnight to just chill out. Know that you're going to be amongst friends. And yeah, an important part of what we do, for anyone who's kind of listening and may be curious about the sessions is self care and kind of well being. So it might be emotional well being and checking in with each other. And the session is also supported by a family practitioner from RSBC who's there to kind of meet our emotional needs and keep an eye on everyone. But also, yeah, we do kind of activities like we had last week, we had yoga again, which was really lovely, run by my colleague, Ayman. And yeah, there's a bit bit of everything. I think you guys would probably agree

Amy: 20:34

Yeah, there's always something different as well, which really is amazing, because, like, it's not just, like, focused on self care, like every single time. We've also got, like, other things. Like, I don't know we're doing music this week, aren't we, so that can be focused on my mental health too. But it's not like, all skincare, if that makes sense. So if we all don't enjoy that all the time, we've also got something else as well, which is really good.

Fran: 21:05

Yeah, I think there's something there for everyone. Is there anything else that you guys want to share about your experiences of sisterhood, or any kind of message you have for listeners who are looking for a bit of advice, guidance or information about what we do?

Nyla: 21:24

So I would say that like, sisterhood and RSBC is like, really good because with RSBC, There's, like, different clubs and different activities and I think there's something for everybody that is VI

Juliette Parfitt: 21:40

Thank you, Fran, Amy and Nyla, for chatting to us, giving us your advice and telling us all about sisterhood. If you're a VI woman aged between 13 and 25 and you're interested, you can find the link to the sisterhood events on our calendar, on the show notes for this podcast. You can listen to this and all the other Unseen Podcast episodes on Apple Spotify, everywhere else you get podcasts and also on our Youth Voice YouTube channel, where you can also have a look at some of our videos, and we will catch you in the next one. Thank you guys for coming along.

Everyone: 22:12

See ya. Bye. Thank you.