If you wish to do the tag yourself, the questions are:
- What medical condition caused you to be blind or visually impaired?
- In 3 words, describe your vision.
- What is the hardest thing to do being blind or visually impaired?
- What is the best part about being blind or visually impaired?
- What question do you get asked most about or because of your vision?
- Do you have a cane, a guide dog, or neither?
- What one piece of advice would you give to someone who is losing, going to lose, or has lost their vision?
- What is one piece of advice you would you give to a sighted person about interacting with a person who is blind or visually impaired?
- Why did you join YouTube?
- Name 3 people to do this tag next.
Hi everybody. I haven’t made a video in a little while, because things have been a bit mad lately. I’ve just moved to London, so there’s obviously been a lot of upheaval involved in that, a lot of things to sort out. But we’re settling in nicely now, we’re getting the hang of things, we’ve got a few things that we need done. Like I say, there’s still plenty to do, but we’re happy now, we’re comfortable.
And I’ve also joined a social club up here, so that’s given me a chance to get out and about and meet some new people. So I’ve done things like walking round Kensington Gardens, I’ve played Cards Against Humanity, I’ve been to a quiz night, I’ve got a curry night coming up, I’ve got escape rooms coming up, and various other bits and pieces, there’s quite a lot. So it’s been really good to just meet some new people, make some new acquaintances. That’s really helped me to settle in and just have a good time and just, like I say, get out and about.
But the reason for this video is that I’ve been tagged by the wonderful Emily Davison over at Fashioneyesta – hello! – who does a lot of videos about disability, as well as beauty and fashion. So there’s something in there for everyone, do go and check her out, and her blog, and her Twitter, and her Instagram, and her Audioboom, she’s everywhere. She does a wonderful job, so yeah, do go and check her out.
Emily has tagged me to do the Visually Impaired Persons Tag – the VIP Tag – which was originally created by Chatty Chelby, and whose channel I also recommend you subscribe to. She also talks about disability and her visual impairment and all the stuff she gets up to, so that’s really good to watch. So yeah, check her out as well.
So yeah, thank you to Emily for tagging me, and thank you to Chelby for creating the tag in the first place. I did do this tag last year in my written blog, over at welleyenever.com, but that was pretty much a year ago. It was back in February when I checked the date, so that’s soon gone. So these answers might be slightly different, it might give you a more rounded view if you read that in conjunction with watching this. I’m not gonna try and make it identical, but there will be some overlap, some crossover, as is inevitable. So yeah, I hope you find it interesting, and let’s get on with the questions.
Question 1 – What medical condition caused you to be blind or visually impaired?
Well I have Aniridia and Nystagmus. I’ve done videos on each of those, which I’ll link to. But in summary, Aniridia basically means I don’t have an iris in my eye. And the iris controls the size of the pupil, to determine how much light comes in and out of my eye. So when it’s really dark, the pupil should expand to let in as much light as possible, and when it’s really bright, the pupil should shrink, so that less light comes in. But because it doesn’t do that, I’m much more sensitive to glare, more so than other people would be, and I find it a bit trickier to adjust to seeing in the dark. I don’t do too badly, but it is difficult sometimes.
And then Nystagmus basically means that my eyes shake or wobble involuntarily all the time. I don’t notice it – like Aniridia, I’ve always had this, so my brain’s adapted to it. But it does mean I can’t read things at a distance, because I can’t get the focus on it for long enough, and I have to have things close up to read them, and even then it can be a bit of a strain to read for very long, because I’ve got to focus quite intently to read text for a while.
One of the adaptations that I use, on computers and on my phone, is that I invert the colours on the screen. So that means I have white text on a black background, which is the opposite to what most people have. And that means I don’t get the glare off the screen, and it’s really good contrast text for me, so that I can read it much more comfortably and easily, so I can read for a bit longer. So that really helps a great deal, it makes a huge difference.
I’ve had both of those conditions since birth, so as far as I’m concerned my condition is normal, and my brain has adapted to them. I mean, I know my vision isn’t normal, but I don’t know what normal is like, so I don’t feel like I’ve lost anything, I don’t feel that I’m missing anything, even though I know I am, if that makes sense. This just seems normal to me, this is everyday to me, so I don’t have a problem with it. I’ve always just lived with it and adapted to it, and it’s not stopped me doing things I want to do. So yeah, I’m happy and comfortable.
Question 2 – In three words, describe your vision.
Well I would say short, light-sensitive. Because I am short-sighted. Although I can see things at a distance, I can’t see the detail. So I can’t read signs at a distance. So if I’m using the Tube or the buses, I’ll use a little telescope called a monocular that I can read things in the distance with. And then light-sensitive, as I’ve just said when explaining Aniridia, I’m very sensitive to bright sunlight.
And even when the sun isn’t directly out, it may be glaring off the clouds, or off buildings, or something like that, or off raindrops that have recently fallen, I can be quite sensitive to that. Some days are better than others, but when I’m having a particularly bad day, yes It can be quite irritating.
So I do wear sunglasses quite a lot. Even when it’s cloudy, you’ll see me wearing sunglasses sometimes. So, yeah… but like I say, it’s just something I’ve got used to, the sunglasses really help, so that makes things easier when I’m outdoors, as does using the monocular. So I’ve just found ways to adapt and get round things as best I can.
Question 3 – What is the hardest thing to do being blind or visually impaired?
I would say meeting and interacting with other people can be quite hard sometimes, especially regularly sighted people. Because obviously meeting with people who are also visually impaired, they automatically understand you and they know how to interact with you. Interacting with normally sighted people can be hard when they don’t really know you to begin with.
You know, if you’re going to meet someone somewhere, they might say meet in a pub or something, and you’re kind of looking around trying to find them. And they might call out and wave to you, and you still haven’t got a clue where they are. Or trying to find someone in a crowd for instance, just trying to pick out a face is virtually impossible. Or even if someone just walks straight past me and says hello, I won’t see their face quickly enough to register who it was. So unless I happen to recognise their voice, or they have something really distinctive about their appearance that always makes me recognise them, sometimes I’ll appear to blank people. So that can be a bit awkward sometimes.
And then I can’t always judge people’s facial expressions either. I don’t always look people directly in the eyes, because I know if I was to try and, like, force myself to look at someone in the eyes, it would be a strain, kind of, on the Nystagmus in my eyes and make that a bit worse. It’s better to let my eyes kind of do whatever they’re gonna do, rather than try and force them to stick in place, because I can’t do that. So yeah, I tend to just make sure I’m facing in the person’s direction. And, like I say, I can’t always judge their expressions or the looks in their eyes to always accurately gauge how they’re feeling. Usually there’s other cues as well, but occasionally you can’t always tell.
And likewise even with me, because my eyes don’t look normal, sometimes people misinterpret how I’m feeling as well. You know, they might think I’m upset or angry when I’m really not. You know, something like that. It’s just little things that people pick up on that they might misinterpret.
And then the other thing is that when I’m in a noisy environment, like a busy pub or something like that, sometimes it’s hard to pick out people’s voices in amongst all the noise. You know, if there’s a couple of people opposite me or next to me having a conversation, and I kind of want to listen in to chip in, it’s a little bit hard sometimes if they’re not talking to me directly, to pick up their voices if there’s lots of other extraneous noise, like music and other people shouting and talking away. So yeah, that can be quite difficult.
I know there is an associated condition with Aniridia called Auditory Processing Disorder, which I think I might have an element of from what i’ve read about it, having edited a presentation about it for the Aniridia Network’s channel. I mean, I don’t know, I’m not a doctor, but it sounds like the sort of thing that I might have some aspect of. It’s not a case of my hearing being bad, my hearing itself is fine, but it’s the way my brain processes it. I think it’s all part of the genetic defect I have that gave me Aniridia, I think it’s kind of connected. So yeah, that can be quite hard. Noisy, busy environments can be quite difficult sometimes like that.
Question 4 – What’s the best part about being blind or visually impaired?
It does have its perks. I’d say discounted or free travel is quite a big perk, and not having to own a car. I don’t have to pay insurance or for petrol or the MOTs on the car, and things like that. So that’s a huge cost deduction in itself. Certainly here in London you don’t drive if you can really help it I don’t think. And then I have a Disabled Person’s Railcard, so that gets me a third off. I had concessionary bus travel i.e. free bus travel where I came from, and I’m hoping to get the same here. We’re just kind of looking into that at the moment, signing up-with the local authority and all the rest of it. So hopefully I might be able to get a free Oyster card for free travel. But we’ll see.
But yeah, I like using public transport. The Tube and the buses here are easy to use. Especially now you’ve got smartphone apps as well like Citymapper and Street View and things. I can plan my journey in advance really easily, so I know where I’m going before I get there, which is a lot easier than it ever used to be in years gone by. So I think at the moment we live in a really good time where it’s much easier to find your way around, as long as you get used to the apps and things that you can get, and things like that. There’s a lot of help out there. So yeah, I’d say free travel, or discounted travel, is very, very helpful, and definitely helps me to be more independent and confident. I like that a lot.
Question 5 – What question do you get asked about or because of your vision?
Do glasses help? That’s the number one question everybody wants to ask, and often does ask. I suppose it is a natural thing to wonder, but then if you pause for a second and think about it, you know, if glasses helped, then I would be wearing them, it’s as simple as that. I have tried various lenses in the past, they haven’t helped, and I’ve managed fine without them so far. You know, if it got to a point where I did need glasses, I’d be prepared to wear them. But so far so good. Sunglasses are the only things I wear, but otherwise, yeah, I get by without glasses. It’s just fine like that, you know.
And I know the question is well-intentioned, so I’m not knocking anyone who asks it. But if you ever feel like asking me that question, the simple answer is no, glasses don’t help, yes I have tried them. I don’t feel I need them so, yeah, I don’t need glasses at the moment.
Question 6 – Do you have a cane, a guide dog, or neither?
Neither in my case. Like glasses, I don’t feel I need a cane or a guide dog either. I’ve developed enough independence to get around by myself. I was trained to use a symbol cane in school, a white cane, but I never continued with it after I left. I just didn’t feel I needed it. Again, if my sight were to get worse in the future, and it may well do – hopefully not for a long time if it’s gonna happen at all, but if it does – then, yeah, I will consider the options as necessary. I’ll consider a cane, I’ll consider a guide dog, whatever is gonna be best for me. So, yeah, at the moment I don’t need those things, but in the future I would be happy to consider them accordingly if need be.
Question 7 – What piece of advice would you give to someone who is going to lose, or is losing, or has completely lost their vision?
It’s not the end of the world, it won’t stop you living your life. I think that’s the thing I would say. It will be a knock to your confidence, and it will take quite a bit of time and effort to adjust and adapt to how things are going. But there is a lot of help and support out there now – make sure you get it, make sure you have your family and friends around you, and just work at it bit by bit, and just adapt to it as best you can. Don’t think about what you can’t do, because there are a lot of things you can do, you’d be surprised.
You know, there are a lot of things that, just by adapting how you do things and doing things differently, it is still possible to do a lot of the things that you love and enjoy. I mean there’s a friend of mine, at the extreme level, who does extreme sports. But, you know, it can just be something simple like, I don’t know, learning an instrument or something, there’s plenty of blind musicians out there. Or there’s plenty of sports out there you can do. You know, visually impaired people can still play tennis, they can still play goalball, they can still swimming and running, things like that. Or whatever your hobbies may be, in a lot of cases you’ll still be able to do it.
Ok, you might not be able to drive or things like that, but, you know, don’t think about the can’ts, think about the cans. There are lots of things you can do. Research it, look into it, you’d be surprised. Especially with the internet these days, you know, with all the social media and Google and everything else, there’s a lot of information out there. So, yeah, don’t think you can’t do something. Check it out first, you never know.
And then just take your time, do it bit by bit. It will take a while, it will be frustrating sometimes. But like I say, it’s not the end of the world. If you just keep taking things step by step, day by day, you will grow in confidence, you will grow in independence, and you will be fine. So just don’t give up on it if it seems to be taking a while. You will get there, it will be fine.
Question 8 – What one piece of advice would you give to a sighted person who is interacting with someone who is blind or visually impaired?
Don’t make assumptions, don’t make judgements. Don’t think you know what that person is going through. because you don’t. You may have met people who are blind or visually impaired before, you may even have met people with the exact same condition that this other person has. But every person is different, every person with a disability is different. And the effects of even the same disability differs across people, depending on how they’ve adapted to it, depending on severe it is. There are so many variables at play, you really cannot assume anything. So don’t try and guess. The only person who truly understand how their disability affects them is the disabled person themselves.
All you need to do is just be yourself, be respectful. Offer to help them if they need it, and if they don’t need the help, don’t force it upon them. And if you want to ask about their disability, ask if it’s ok to do so, and just try and be sensible with the questions. Don’t be too intrusive. You know, it’s flattering that you’re interested, and it’s great and, you know, often we don’t mind you asking questions. We’re happy to help you learn and understand things, that’s fine. It’s just a case of being respectful, that’s all. That’s all you need to do – just be yourself and be nice. Simple as that.
Question 9 – Why did you join Youtube?
I joined as an experiment really, it was a bit of a whim in a way. I knew that, because I was coming up to London eventually, I knew I’d have to start making some connections and, you know, just seeking out resources and things like that. Not necessarily making friends online, but just seeking out information and resources and things like that that might help me up there.
And then I came across bloggers like Emily Davison and Molly Burke and Tommy Edison and My Blurred World and all sorts of other people. I could name people forever and I’ll miss people out. And I realised that there was this whole community of visually impaired people out there talking about their conditions and raising awareness. And I thought, yeah, you know, that would be nice to get involved in. But I was really nervous about it, I mean, it’s not something that I’ve ever done before.
So, you know, I kind of was looking for a way in. And then Scope did their End The Awkward campaign one year, and I quickly knocked out a video for that. It was just done very quickly, just like this, just holding my phone up, just recording it. I didn’t think it was great, but people seemed to like it. That wasn’t the start of regular videos, it was just an experiment to see how that went.
And then, a few months later, I decided to start up a written blog, because I found it more comfortable perhaps to start actually writing things, where I can edit it properly and really think about what I’m saying. I think I’m more of a writer than a speaker really. So I kind of focused on the written blog for a while.
And then, after doing that for a bit, I realised that those blogs could be adapted into scripts, and if I combine with, like, photos and video clips I’ve already got, I could kind of use the scripts to create a voiceover, and create some hopefully interesting videos about my condition. And so I started having a go at that, and that worked well. I mean, I haven’t got millions of viewers, but it generated interest, and it got good feedback from the people that did see it. So I kind of just carried it on a bit.
And then it’s kind of gone in the other direction a little bit, in that as I’ve kind of continued just knocking out videos and blog posts here and there, I’ve now got to a point where I’m making videos, and then posting the transcripts of those videos in the blog. So the videos are becoming blog posts, rather than the blog posts becoming videos. It’s kind of becoming a mixture of the two now. So yeah, that’s quite useful.
The transcripts come from the fact that I’m captioning all my videos. I’ve been captioning some of Emily Davison’s as well, as a favour to her because she does very good work, and I’ve been captioning my own as well in the process. So the transcripts I’ve been typing up for myself, I’ve been able to put in the blog to make extra posts. So yeah, it’s kind of developed. I haven’t got any major plans for what to do with the channel or the blog, I’m just kind of posting things as I feel like it, in the hope that people will be interested in it. You know, like I say, I’m not after lots of ad revenue, I’m not trying to be a big Youtube sensation or anything like that. I’m just putting stuff out there, and if it interests people, great. if it doesn’t, that’s fine too.
So yeah, it’s worked out well. And through it I’ve made a few useful connections, I think that’s the key thing. I’ve made a few good friends. And, you know, there are even people that I’m looking to meet up with. There’s one person in a couple of days time I’m meeting up with, as a direct result of them seeing the stuff I’ve done on here, and then I’ve helped them with a few of their videos as well. So yeah, I’m glad I’ve done it, it’s been an interesting and a worthwhile experiment I think. It’s been something new for me, completely new. And, yeah, it’s paid dividends, it’s had outcomes, so I’m very happy I’ve done it. And I will keep doing little bits here and there, to keep it going, keep it ticking over.
Question 10 – Name 3 people to do this tag next.
I don’t really know who to suggest for this, because the bloggers and Youtubers that I follow, the names that I would have in mind have already done it, either in written form or in video form. So I’m not really sure who I can easily nominate amongst the people who I know read or watch my content.
So I’ll basically just say if you’re watching this, and you want to do this tag, please feel free. Credit Chatty Chelby for creating the tag in the first place. And let me know if you do the tag as well as a result of watching this.
But I hope you found my answers interesting, I know I’m a bit of a rambler sometimes. But, yeah, I hope it gave you a little insight into how things go for me. There are other videos on my channel where I go into more detail about some of this stuff, so if you haven’t seen them, by all means go and watch them. If you have any questions, leave them in the comments. If there’s any videos you want me to do, talking about certain things, again let me know in the comments. Or on Twitter I’m at well_eye_never. My blog is at welleyenever.com. And the word ‘eye’ in the middle, not the letter ‘i’, it’s the word ‘eye’, E-Y-E.
And that’s it, yeah, so again, thank you Chatty Chelby for creating the tag, thank you to Emily Davison for tagging me to do it, and thank you for watching, I hope you found it interesting. Bye for now.