RSBC Unseen Episode 08 - Disability Pride Month

To mark Disability Pride Month, we chatted with some of our Youth Forum members. they discussed their journeys with understanding their vision impairments, how they feel about being disabled and things they've done that they're proud of. 

 

 

Transcript:

Juliette Parfitt  0:00  
Hi, welcome to the RSBC Unseen Podcast. I'm Juliette, and I work here at RSBC. 

Juliette Parfitt  0:05  
Today, we're going to be talking all things disability pride because July in the UK is Disability Pride Month. Uh, we've been celebrating it every year since 2015 so I've got some members of the Youth Forum with me today, and they're going to be talking about their journeys with their visual impairments and the things that they've done that they're proud of. So do you want to introduce yourself guys?

Alyssia  0:28  
Hello. My name is Alyssia. I'm 18 years old and I've been born blind.

Molly  0:32  
Hi, my name is Molly. I'm 18 years old and I've been visually impaired for four and a half years.

Rona  0:39  
Hi, I'm Rona. I'm 24 and I've been blind since birth.

Zenny  0:44  
Hello, I'm Zenny. I'm 24 and I've also been vision impaired since birth.

Juliette Parfitt  0:50  
So how did you guys feel about being visually impaired when you were younger, or, I guess, since your diagnosis, or for those of you who've been VI since birth, how did you feel like, as you sort of realised what that meant?

Molly  1:04  
Uhm, when I was first diagnosed with being visually impaired, um I was slightly like, you know, alarmed really, by the fact that, you know, I was visually impaired I was diagnosed with what is scientifically known like the name is scientifically optical atrophy. I just call it tunnel vision, basically, so I can't see things unless they're right in front of me. And as I kind of progressed through my time in the hospital, and then when I was discharged from the hospital, I started to notice my visual impairment a lot more. It did kind of freak me out a little bit, but over time, I've kind of developed with it, and I've learned to kind of use it really to my own advantage. So yeah, over time, I'd say I started to feel a bit better about it.

Juliette Parfitt  1:55  
Great. Was it quite like scary at first, like me sort of feeling quite overwhelmed?

Molly  2:00  
Yeah, it was, it was really just weird, really just to kind of just think, oh my gosh, like, because I'd never realised what it was like to be, like, you know, visually impaired, like, just completely blind, or like, partially blind. So being able to kind of like, find that out for myself has made me just kind of think, well, what would happen if I, like, compared the eyesight that I've got now to what I did before, the whole like, situation and stuff like that.

Juliette Parfitt  2:32  
Yeah, because I think it could be quite overwhelming. But I do also think it does help you, like, empathise with other people as well. Do you think

Molly  2:38  
that? Yeah, definitely, yeah. Oh,

Juliette Parfitt  2:42  
Zenni,

Zenny  2:44  
yeah. So for me, I suppose it's a little different, because I've been vision impaired since birth. I've got some form of corneal problems, which affects my vision, as well as, like glaucoma and nystagmus. But I think when I was really young, it's really weird, because I think I went through like, different stages. It didn't really matter to me. I didn't, like, I knew I was blind, but I kind of thought it was cool, because, like, I got to use all this fun equipment, you know, at the age of, like, four or five that I thought was pretty cool. Like, you know, I was using, I mean, as a really small child, so it was kind of, they had to, like, put extensions on the Perkins, kind of keys for me to use it. But it but it was still pretty cool because, like, I couldn't reach the table. But

Zenny  3:23  
like, did you have a tiny little cane?

Juliette Parfitt  3:23  
I don't think I had a cane

Zenny  3:23  
at that point. 

Zenny  3:23  
Oh, the tiny canes are so adorable. 

Zenny  3:24  
Yeah, they are. They're. I didn't, because I think the first cane I got was, like, you know, that plastic one, the tele cane. But that wasn't until I was about a little bit older, but I think when I was younger, like, I had all this cool equipment, but also my vision wasn't as bad and I had, I was kind of living the life I had. I was literally the popular kid in school. I was friends with everybody. I even had a little boyfriend as well. My God, he was cute. But, like, I think it kind of changed a little bit when I moved to school, and then also my vision was getting kind of worse, and then with that, obviously I was a little bit older, and so were the kids and people around me. So when people were noticing it and kind of behaving like, in terms of, in terms of, if that makes any sense, like they were like, based on it, they were behaving based on it. And like, I think it was their behaviour that kind of made me notice it a little bit more. So

Juliette Parfitt  4:26  
it's almost like, when they started to understand what that meant, it kind of changed. It changed how you understood

Zenny  4:31  
it. Yeah, because when I was younger, I didn't like, obviously, I kind of felt like I fit in and everything. And then when I moved to school, when I was obviously older at the same time, and it was getting worse, like, I think those three things simultaneously happening. And like, you know, then I was being introduced to, kind of the cane and things like that, and I was quite embarrassed. I'm ashamed to say, to kind of use it like I never wanted to use it. And like everyone would try and get me to use and I justWould not so

Juliette Parfitt  5:01  
I think that's quite a common feeling. We're going to have some future episodes looking at using white canes. So everyone watch this space. Fab, Thanks Zen, so, Rona, how about you? 

Rona  5:11  
Okay, then, so, I've been blind since birth. My condition is called septal dysplasia. I was only diagnosed a year after I was born, but this professional didn't believe that I couldn't see it all. My dad told me that for months, professionals were telling him that my eyes just needed the time to develop. Because I was born prematurely when I was younger, I always remember my parents and the rest of my family just saying that I can't see. And I learnt to realise that I couldn't see anything at all. There's nothing actually wrong with my eyes. It's the pituitary gland in my brain that has caused my blindness, as it does not work. It's like a bridge with the water in the brain, but my bridge has been sunk, which means that my eyes cannot carry messages to my brain to enable me to see properly. But my eyes work fine, as I can feel sensations when their lights on and when the sun is shining in my face, whenever my parents or family said that I can't see, I understood that my eyes would be more difficult than the lives of my fully sighted peers and my  brother, and I would need to work harder than then to achieve success. Also, I understood it that I would always need support at school. I was never bullied at school, so I thought I was lucky, but I was always with a TA and a small group of friends who were really supportive. I never really went anywhere at school on my own. You know, I did this all throughout my school, until I was RNC, when I tried to when I was starting to develop confidence with my mobility, I had to learn. I understood that I had to learn braille so that I could learn to read and write like everybody else, but I actually enjoyed learning braille. That was actually my favourite thing to do. So I did not find this hard to accept I have physical disabilities as well, but and I had operations to try and resolve these like hip dysplasia and hypermobility, and I did really struggle with that, because I couldn't walk properly. You know, when I did sort of get the strength to walk after having the last operation, I was introduced to the white cane, and I didn't like sweeping it at first, because I was worried about hitting other students, but they taught me to be really careful, and if I wasn't sure about my environment, I'd just be guided instead, so that I could avoid any instance and not get into trouble. But for a long time, I did have to use another walking aid, like a hoopie, which was like a plastic hula hoop with a rubber handle on the end, or a walking frame, or even a wheelchair. So yeah, I've had a lot of stuff to accept, and some stuff has been harder than others, but I feel like I've always just accepted my blindness. It's more the other disabilities I have that I've had to learn to accept. 

Rona  6:21  
So when you were younger and you started to realise that you would need more support with things, and that you were going to have to work harder than your sighted peers. How did that make you feel?

Rona  8:02  
Well, I did feel the pressure to be honest. Because, you know, what happens if I don't succeed? What happens if I fail? Because I had to, you know, I felt like I had to prove people right, because everybody was saying that I couldn't do this, couldn't do that, that I couldn't, you know, I wouldn't succeed, like the other people in my class. Initially, I was told that I might have to go to a special school at the age of four, and we weren't happy with that. 

Juliette Parfitt  8:31  
So did it make you feel like more determined to overcome it? 

Rona  8:35  
Yeah, but I did feel the pressure of having to kind of prove people that was quite a hard thing.

Juliette Parfitt  8:43  
Yeah, thanks. Ro. Alyssia, what about you?

Alyssia  8:48  
So like the others, I have been born blind, and for me accepting it, I don't really remember when I was first told, apparently I was told at the age of four, because I got diagnosed when I was a baby, but I remember just feeling very frustrated about it all, like I felt frustrated that I had to walk with a cane. I felt frustrated that I couldn't participate in certain games. I felt frustrated that I had support. And, yeah, I was feeling very frustrated and upset with things. I think being I think there were some positives that I liked about being blind, like like Zenny said about using cool equipment. I think one of my favourite things was being able to use tactile art supplies. So while the others were using pens and pencils, I was being able to use all kinds of different art supplies, like tinsel and pipe cleaners and stickers. And I found that so cool. And actually one time, one kid was like, Oh, can we use them? Like, you know, like me, and they got told no, because those were, like, my resources. So that was actually something I really liked. But I think during primary school as well, I was like, Rona said i. Lot of the time with the TA especially over lunchtime, and I used to get very frustrated. I remember had a bit of an incident because I used to go in earlier for lunch, and I didn't want to go in earlier this time because I was having some fun with my friends. And now I didn't handle it in the best way, like crying about it isn't the best way. And I was told, when I got, you know, asked to explain my situation, that my feelings were right, but the way I kind of dealt with them weren't exactly but, yeah,

Juliette Parfitt  10:27  
that's fab, so how do you feel about your visual impairment now? 

Rona  10:30  
So now I have left education and I'm looking for work, so I consider my VA vi now as a vital part of me as it has shaped who I am. I'm a kind and caring individual always thinks of others first before myself, and I use my own vi to make a difference in the lives of others who are also VI. I accept my physical disabilities as just a part of me now as well. I would say that my VA is a gift because I am an inspiration or Pathfinder to others, and it enables me to think outside the box. I can use my VI as an advantage to help me speak up for myself in terms of ensuring my rights are followed as a blind person, and that I receive all the care and support I need, including reasonable adjustments in the workplace.

Juliette Parfitt  11:15  
Thanks, Zenny

Zenny  11:18  
so for me now, I think because I've never really had a big issue with my vision impairment. I mean, I've, obviously, I've struggled with other people's perceptions, but I've never really had, like, a big, big issue. Like, there have been times where I've been like, I can't do this, or I can't do that. Like, how am I going to do this? But I think as I was getting older and older, I've tried to be more pragmatic, and kind of been like, I can't really change the fact that I'm vision impairment. Like, vision impaired, there's no cure, there's no treatment. And I just remember this one time, like, because when I was younger, I never understood it properly. But I went to the hospital once, and it was like, it was for, like, a regular checkup, and I was at an age where I was curious and I wanted to know. So, like, what you know? What do I have exactly? Because I still never understood it, and I was like, what does this mean? And it was a day that my consultant told me, you know, this is what you have there is it's very inevitable that it, there's no, there's no kind of chance of it really changing or being cured or anything. And I really struggled that day. And that was the day where it kind of burst into tears, and I was really inconsolable, and I but I think that was a changing point, like, I'd struggled before that a little bit, but that day when I just let when I had finally understood it and let it all out, I think since then, things kind of got better. 

Juliette Parfitt  12:33  
It's like, you it brings it all home, and it's like, it's quite a lot, but then hearing it means that, I guess you can process it and start to accept,

Zenny  12:40  
yeah, yeah, exactly. And so that was when I was about probably 14 or 15. So then, since then, things got a lot better. And then I think, because I've been able to prove to myself that I can do the things that I thought I wouldn't be able to do, it's made it a lot easier. So now I'm at a point where I'm like, Yeah, you know what? Like, this is how it is I'm capable. Yeah, exactly. Yeah, exactly, but yeah, that's kind of where I am now,

Zenny  13:02  
nice! Alyssia?

Alyssia  13:05  
So for me, I now feel a lot more positive about my disability. So I'm currently, in a couple of weeks, leaving a specialist college for the vision impaired the RNC, and I think that helped me so massively. And I hope that this change will remain in the future. I definitely still have down days, especially when I'm dealing with stuff outside of the college, but I'm hoping that just knowing more vision impaired people and being part of more groups like this one will really help with that. And it's interesting as well, because I do remember having a moment a bit like Zenny did way back when I was in Year 10, and I just really spent several hours pretty much crying and just being very upset. This was during secondary school, and I just really struggled with friendships and a lot of, you know, different bits going on. And I think after that, it's been like, I guess, a bit of a up and down, but mostly I don't think I've been as bad as that for a while. But, yeah, that's me. 

Juliette Parfitt  14:01  
You know what? I think there's something about that age, because 14/15, those were my realisation years, and they were, they were difficult. So I think there's something about that, that age, that mid teen point where you get old enough you go, Oh, I I think I understand what this means, and oh, it's going to be a bit tough. I've got to, like, process this. So I think it's interesting that it's such a similar aim for for everybody.

Alyssia  14:24  
I think it's hormones as well, like it's hormones, but it's also just dealing with stuff to do with friendships in school, because that can be very difficult. I've now learned that it's actually very difficult for many different types of people.

Juliette Parfitt  14:36  
Fab, so Molly, how do you feel about your visual impairment now? 

Molly  14:40  
I have a lot of mixed emotions around it. There's been a lot of highs and lows involving it. Along with my visual impairment, I've also had a limitation with my right arm and my right leg. I've been learning for the past like four years to be able to walk on. Walking on pretty well with my leg, and I'm getting used to having my hand like this and stuff like that. But with that and my visual impairment, it's very frustrating, kind of being able to do stuff really like, for example, I am part of a course in college where you could basically choose, like, you could basically choose like, what different courses you want to have a look at, and stuff like that. And me and my form had a go at doing catering. And obviously there's typical things that you have to do, like stirring stuff, but it's very frustrating for me, because I'd either have to use my whole bad hand to be able to hold the bowl while I stir it, and then also, I have to use as much in my visual impairment as I can to make sure that I haven't spilled anything anywhere, or even doing things as like pouring liquids into a glass that are a challenge for me, because I can't only see if it's actually going into the glass, because it might be pouring onto the side, and I'm only just realising when half of it is all over the counter, and I'm just, yeah, it could be a bit frustrating. And being able to do other things like even something as simple as being able to play catch, I can't really catch stuff. I mean, I couldn't catch very well anyway beforehand, but I can't really, I mean, either half the time, I can't even see if the ball is coming to me, so I might end up just flying past me, or it might hit me in the face, or something like that, or even just doing other things like I quite like playing video games sometimes. And most video games, or some of them really tend to do a thing where your character, your sprite, whatever you want to call it tends to walk to the right, and obviously, because of my visual impairment, I can't see what comes ahead. So it's basically me having to get used to these different levels and stuff and just kind of predict what happens and stuff like that, which is very frustrating, but obviously I've learned to adapt with that. Yeah, no, my vision, it's very frustrating. There's sometimes where I just feel like I want to just, you know, just get really angry with myself, or just feel like I want to cry, or something like that. I'll just lay it all out and stuff like that. And sometimes that is the best way for me to be able to do it and stuff. I think it's, it's quite healthy being able to let stuff out, really, you know,

Juliette Parfitt  17:22  
thanks Molly. So next question, what's something that you've done as a VI person that people might be surprised about? 

Zenny  17:29  
Um, so what I've done That's surprising. I mean, I think I've done a few things not to sound boastful, 

Juliette Parfitt  17:36  
boast away, my friend, 

Zenny  17:39  
I've done a few things that I suppose have surprised myself, so hopefully they surprise other people. Like, I never, never, ever thought that I'd be able to go, like, go solo, travelling, like, on a plane, and just like, fly to other countries and things, you know, I've been able to do that. And I think that's one of the and I know that's kind of like a random thing. 

Juliette Parfitt  17:58  
No, it's a it's really important. If there's a thing you want to do and you've done it. Like, that's amazing,

Zenny  18:02  
yeah. And I just think that, like, it's just being able to, like, and not even just planes, I suppose it's like travelling in general. Like, I'm kind of fortunate that I live in an area where transport links are pretty good. Just being able to kind of just decide that, okay, this is what I'm going to do today, or this is what I'm going to plan to do over the next couple months, like compared to a lot of other things, is kind of one of the more basic things. But I think

Juliette Parfitt  18:26  
that's important, though, for independence, right? Having independence is something to be proud of.

Zenny  18:31  
Yeah, absolutely.

Juliette Parfitt  18:32  
Rona,

Rona  18:34  
so one thing I have done as a blind person that many people are surprised at is that I achieved a grade five in my GCSE maths when I retook it at my local college in 2021 so I failed my maths when I took original GCSEs in secondary school in 2017 as I only achieved a grade two or an F, if we've got people listening that use The old system, but I passed with a grade five or a B when I retook it in 2021 and exams were being assessed by teachers as part of the aftermath of the effects of COVID. A lot of sighted people think that blind people can't do maths because it is very visual, and at one point, I almost felt the same. I at one point, I wanted to scream and say, I can't do maths. I'm blind. This doesn't make any sense to me. I really did struggle with confidence in my maths, but I had a teacher at college that was really good, and she really supported me during COVID. She used to do one to ones with me, where we did practice papers every single week. The fact that I passed it the second time around shows my determination. And everyone is surprised when I tell them what I got in my GCC maths I did really well in my GCC as a whole. Which always surprises people who don't know me because they think people can't sit exams due to the stress levels being too much for them. But another thing which mainly surprises my dad is that quite recently, I have been doing quite a lot of public speaking to high profile individuals and organisations, especially around the forum. I enjoy doing this, but my dad says I blow him away every day when I tell him what I've been doing in the forum, such as writing to my local MPs and speaking in big meetings. I don't think I'd, you know, I wouldn't be part of the forum if I wasn't vi I think he's really proud of how far I've come in the last 20 years or so.

Juliette Parfitt  20:41  
Yeah, I think we often end up doing things that we wouldn't expect because of visual impairments, I think, and I do think that's a real positive to take away from it. Molly, what's something you've done that would surprise people? 

Molly  20:56  
So when I am asked this question, there is two things that come to mind. Number one, which I guess is something that I kind of developed before I became visually impaired, and then as times kind of progressed on, it's just somehow carried with me. But I can make various different origami creations, such as an origami love heart, a paper crane, a dinosaur, all sorts, really, which I'm really amazed about, that I can still really do it. It's, it's quite astounding, really, how I managed to do it, really. But

Juliette Parfitt  21:37  
will you make me a dinosaur next time I see you? 

Molly  21:39  
Oh, yeah, no, definitely. And the other thing, which I guess is probably just something that, I guess involved courage. For me, I'm currently in my second year of being at college, and I decided for my second year to volunteer as an ambassador. And I've done so many different things with this whole volunteering thing. I have helped with open evenings at the college or going to other colleges and stuff, helping out, doing challenges and stuff like the ice bucket challenge that we did recently. Loads of different things that has basically helped me with my confidence and also with making friends. I've made a lot of friends who were also want to help with, like, volunteering and just trying to make college, like, so much better. And I absolutely love it. So, yeah, I see those two are probably my fav. My two like, important things, really, that I'd say that I could do that. I'm still astounded to this day that, you know, I managed to have been able to do it. They are very different though

Juliette Parfitt  22:47  
I love that. Though absolutely love it. Alyssia, what about you? 

Alyssia  22:51  
so one thing that I guess would surprise some people is last year I did a year of judo. I just decided to do it for fun, to try it out, and I'm not going to continue it professionally, but it was really good fun, and it was something I was a little surprised that I enjoyed so much. And I think that might be one thing that surprises people, because they kind of expect people with a vision impairment to not be able to do sports or handle themselves, so that's something that I've done.

Juliette Parfitt  23:22  
I'm actually know what I think it's an interesting point, because you're right, but I'm actually, I've actually tried a bigger variety of sports and activities since I lost all my eyesight than when I could see a bit more. I just think it pushes you to try different things for some reason. I don't really know why, but for sure, like I I've definitely tried some different things that I would not have done if I had the vision levels that I had when I was younger. 

Juliette Parfitt  23:51  
Why do you think it's important for us to have our own pride month as disabled people?

Alyssia  23:58  
I think because our disabilities affect us in so many ways, and sometimes we can be excluded from things. I think, like any minority group, it's important to have a month where we celebrate what's positive about our disabilities, especially as sometimes it can be difficult to

Zenny  24:14  
so actually, I think one of the things that is important about having a Pride Month is because we get to do stuff like this and raise awareness of the stuff that we can do in that. I think that's really helpful for ourselves personally, but also for other vision impaired people across the community who maybe aren't as confident, or who are maybe new to like having a diagnosis or etc. I think it's probably a time that can really help them, if they see online or around, like, wherever that there's loads of other vi people being able to do this. So it hopefully gives them hope

Juliette Parfitt  24:53  
totally and I think it helps, like, decrease isolation. It might help people wherever they are in their sort of journeys of acceptance, right?

Zenny  25:00  
Yeah, absolutely,

Molly  25:02  
I definitely think that the most important thing really about this is partially going off of what Zenny and Alyssia were saying about to raise awareness is definitely a big thing for those that are visually impaired and those that aren't, some that might be, you know, learning about what it means to be visually impaired, or just anyone who is willing to, you know, find out what it all means and where to start on it all.

Rona  25:33  
So I feel Disability Pride Month is important because it gives us the VI people and relevant organisations such as RSBC the annual opportunity to raise awareness of different disabilities through the multi colour disability pride flag, specifically for visual impairments. I feel that Disability Pride Month is important because vi can mean a lot of things for a lot of people, in terms of the degree of useful vision an individual has got, and I feel it gives us the chance to raise awareness of different types of visual impairments, as well as different medical conditions which can cause sight loss. We can also raise awareness of the everyday barriers we face and show fully sighted people what life is really like with a visual impairment. Hopefully this creates a wider societal, cultural shift towards inclusivity in the future. Thank you from

Juliette Parfitt  26:33  
all of us here at RSBC, we want to wish you all a very happy Pride Month.

Rona  26:37  
Yeah, happy Disability Pride Month. I.

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