Growing Up With Sight Loss

When I started my blog and Youtube channel, I assumed that the only talking I’d be doing for people about my disability was purely from the comfort of my own home, reaching people through their computers and smart devices. But then, last year, I ended up giving my first ever public talk to adults at the Nystagmus Network Open Day, about building my new social network. It was a complete surprise and a completely new experience for me, and one that I assumed was going to be a one-off.

However, earlier this month I had the opportunity to give another talk, this time for a very different audience – primary school children, around 9 to 11 years old, at St Joseph’s RC Primary School, who were awesome. And what I want to do here is give you an overview of what I said. I wanted to take the time to write it down for posterity anyway, as I went over it in my head beforehand rather than writing a script.

So I figured you might find it interesting to read as well (or watch my video if you prefer), as it gives another perspective on my journey through life to date.

Contents

• Giving A Talk To Children
• Starting At School
• Growing In Confidence
• How Aniridia Affects Me
• How Nystagmus Affects Me
• Conclusion

Giving A Talk To Children

Children are a very special type of audience, so it’s safe to say that I was just as nervous, if not a bit more so, than when I gave my first talk to adults last year. After all, this was a huge opportunity to deliver an important message to some members of the younger generation, and I didn’t want to confuse or bore them. And I had no idea what questions, if any, they might ask me either. The offer had also come completely out of the blue, as I’d never expected to be asked to do something like that.

But I went for it and gave it a go, as I was flattered to be given the chance to push myself and try something different, and it was for a very important cause. And it ended up being one of the most special and rewarding experiences I’ve ever had. Everybody at the school was wonderful and friendly, and the children in particular were amazing. They were really attentive and polite, they were fascinated by my sunglasses and monocular that I let them pass around, they enjoyed hearing the speech on my phone, and they asked very thoughtful questions at the end, which proved they had listened and understood. So it went really well.

And the feedback I’ve had from the staff and pupils has been mind-blowing – thanking me for my honesty, and using words like “inspirational”, “amazing”, “fantastic”, “brilliant” and “magnificent”. One or two of the pupils even said it was their best assembly ever apparently, which is quite some achievement! And overall it appears to have had a positive impact on how the children perceive people with disabilities, which was of course the aim. When you’re a child with a disability, you can’t explain it to others very easily, so to hear it from an adult’s perspective is important, So I’m delighted that it went down so well. Amazed, but delighted!

So this is an adapted written version of what I said on the day, with a little bit more detail than I could give at the time. It’ll give you a general sense of how my talk was structured, and hopefully it will give you a good overview of how my life with a visual impairment has developed over the years.

Starting At School

My name is Glen, and I want to talk to you about what it was like for me growing up, and then tell you a bit about what things are like for me now, so you can see how things have changed for me over the years.

When I started at school, I found things really hard to begin with. I found it hard to do my schoolwork, and in particular I found it very hard to make friends.

And I really wanted to be friends with the other kids. I wanted to hang out with them, play games with them, have a laugh with them, go to parties with them, and so on. And I liked all the same things as them – watching TV, playing computer games, listening to music, reading, books, playing outside. I enjoy all that kind of stuff, just like everyone else.

But the other kids didn’t want to be friends with me, because I was different to them. And that’s because I have a disability. My eyes don’t work as well as they should, so I can’t see perfectly. That’s the only thing that’s wrong with me – everything else about me is fine. I’m still a normal person, it’s just my eyes that are a bit dodgy.

The other children didn’t understand this though. They knew I was different, and they knew there was something wrong with my eyes – but they didn’t understand why or how it affected me. And they didn’t try to understand, perhaps because they were scared or unsure about talking about it.

So they just thought that I was this strange kid who couldn’t see properly. And because of that, they assumed I couldn’t do anything, couldn’t have fun, and wouldn’t be very interesting to hang out with. So most of them just ignored me and made friends with other people. But a few of them also bullied and teased me because of it, which of course made me very upset.

So I just assumed that nobody liked me, and became very shy and quiet and lonely. It felt like it was all my fault, and that the other children were probably right. Maybe I was useless and couldn’t do anything, and maybe I really was boring. And if nobody wanted to be friends with me, then it would always be like that for the rest of my life. So I didn’t have any confidence in myself. I was even too scared to put my hand up in class to answer questions, in case I embarrassed myself by getting something wrong.

I was then moved to a new school for people like me who couldn’t see very well, but that didn’t change things straight away. Because I had no self-confidence by then, I was still really quiet and shy, in my lessons and around the other kids. And because of that, I was still teased and bullied by some children at this new school, because they realised it was easy to upset me. So that didn’t help me to feel any better initially. There were one or two people that I did make friends with early on, but even then I was still very anxious around them, because I had so little confidence in myself.

So to me, at that age, it didn’t feel like things were going to improve. But then, bit by bit, things did start to get better. And this isn’t because I was at a special school for the visually impaired particularly – what happened next could have been achieved just as well in a mainstream school, if the support had been there. So if they had looked after me better, I’d have stayed there. But they didn’t, hence the move. However, it is important to point out that many visually impaired and disabled people do succeed in mainstream schools, so this isn’t a criticism of mainstream education as a whole. It works for some and not for others. So this is just my own personal experience.

Growing In Confidence

My parents and teachers supported and encouraged me to work hard in class and try new hobbies, to see what I might enjoy and be good at. And I gradually discovered that there were things I could succeed in. I really enjoyed swimming for instance, and ended up doing lots of competitions, and doing well in them. I joined a choir at school too, with a small group of us getting together in a classroom to sing once a week, because I liked music and I was good at singing at that age. I joined the cubs and scouts too. And I was given parts in school plays each year. And in my lessons, I found I was good at things like maths and English and computers.

By doing these things, I was proving to myself that I could be good at things and enjoy them, and that made me feel confident. But also, I was proving it to the other children as well. They were becoming more aware that this quiet, shy kid was actually being successful, because I was winning medals in swimming competitions, having important roles in school plays, getting good marks from teachers in my lessons, and so on.

So I began to learn a very important lesson about myself, and the other children learned a very important lesson about me too. And if you take just one thing away from this, then let it be this…

Just because I have a disability, it doesn’t mean I can’t do anything. In fact, I can do the same things as everybody else, I just have to do them a bit differently sometimes.

Once the children at my school began to understand that, it started to become easier to make friends. For instance, I was making friends with people I was with at swimming events, in the choir, in the cubs, and the people I was acting with in school plays.

By doing things I enjoyed, I was able to make friends with other people who liked the same things, and that was an important lesson for me. And because I was good at things like maths, other children started to ask me to help them, so we worked together on things sometimes, and I was able to make friends that way too.

And it got to a point where I even made friends with the children who had bullied me to begin with. I was doing well, much better than them in fact, as I was getting better results and more perks from the teachers than they were. So they started to have more respect for me. They realised that they couldn’t tease me for being pathetic and boring any more, because that was no longer true.

So we got to know each other better and became friends because of it. They finally got to understand me, and appreciated why I found things difficult. So they knew they had been wrong about me.

But also, I had been wrong about them too, because I learned that they weren’t just a bunch of horrible boys. The reason they had bullied me wasn’t my fault. It had never been my fault. And it wasn’t their fault either. They had their own problems that I’d never known about before. They were different problems to mine but, at the end of the day they still wanted to make friends just like anyone else, and they still needed help and support just like I did. And they didn’t always get that support to begin with.

So if you’re being bullied, remember that it’s not your fault. Bullies have problems of their own, even if they don’t admit it, that they need help to deal with. Because they wouldn’t feel the need to behave like that if everything was going well.

So in the end, I did very well at school, had lots of fun and made lots of friends, so I ended up being a lot more confident than when I started. I then went on to college and university, and got a good job that I’ve had for over 13 years now. So things have worked out very well.

Which brings me to today. So now I want to tell you what exactly is wrong with my eyes, and show you how I do things now.

How Aniridia Affects Me

There are 2 things wrong with my eyes, and the first is a condition called Aniridia. This means I don’t have the coloured circle in my eye, called the iris. And this basically means I can’t adjust to different types of light very well.

The main problem it causes is with daylight. Because if I go outside on a sunny day, the sunshine will seem really, really, really bright, much more so than for normal people. And normal sunglasses aren’t good enough to help me deal with that.

So instead I wear special glasses that have green lenses, because the green colour helps to make it a lot easier. And I won’t just wear them when it’s sunny either.

Even if it’s a cloudy day, it can still seem too bright for me, so I’ll often wear the glasses then as well. And even the snow we had recently can cause problems. It’s lovely to look at and fun to play in – but it’s also bright white in colour, so that can reflect the light and seem bright to me as well.

So I will often wear my glasses outside even when the sun isn’t out. It may look strange to others, but I think they look pretty cool, and they really do help me a lot.

Brightness also affects me on computer screens and my phone as well. Because computers often have bright white backgrounds. So it’s very tiring on my eyes to look at it for very long. And I can’t just turn down the brightness, because it turns down everything and makes it even harder to see.

So instead, I swap the colours. I use an option on my computer and my phone called Invert Colours, which basically turns all of the backgrounds black, and makes the text white.

So with a black background, there is no brightness or glare, and the white text stands out really well. So that makes things a lot easier for me to read. Sure, it switches the colours in photos and videos as well, but I can quickly swap the colours back to look at them if I need to.

So that’s how I make things easier for me with brightness, by using sunglasses outdoors and changing the colours on computers and my phone.

I do also find it harder than other people to see in the dark as well. So if I go into a room that’s quite dark, it can take a while to adjust to it, and even when I do I can’t see perfectly. And when I go out out in the evenings, I make sure I stick to streets that are well-lit, and take my time if I need to. I don’t use a cane, because I can see well enough not to need one, but I do have one in case I feel I need it.

How Nystagmus Affects Me

The other condition I have is called Nystagmus. This means my eyes never stay still. They’re always moving and jumping around, and I can’t control it.

This doesn’t mean that everything I look at is moving though. What I see appears to be still, because my brain is trying to deal with it as best it can.

However, it does mean I can’t see things clearly, especially at a distance, because my eyes can’t stay still for long enough to focus on them. So I can only read things if they are close up to me or are very large.

So anything I see in the distance is a bit blurry – I might be able to see where it is, and if I can see it then I can roughly make out its shape and colour. But I can’t read things or see much detail if I’m not close to it. So when I’m out and about, I can’t read signs, bus numbers, street names, shop names, signs in train stations, etc.

So when I’m out I use a small telescope, called a monocular, to look at things like signs and bus numbers, and that really helps a lot.

And when I’m using computers or my phone, I can make text bigger or use the zoom feature to make things larger, or I can turn on speech to have things read to me. And if I want to read a book, I prefer to listen to an audiobook rather  than read a paper version, as it’s much easier.

I can also talk to Siri on my phone and computer, and Alexa on my Amazon Echo, to ask questions and have information spoken back to me, or I can ask them to play music and books for me.

I also use audio description sometimes, either when watching TV, or if I go to the theatre or cinema. This basically means you get an extra voice describing what people are doing, what they’re wearing, where they are, etc, so I can understand what’s happening if I can’t see it clearly.

I don’t always need to use it for the TV, especially if I can sit quite close to the screen to see things. But for the theatre and the cinema, when the stage or screen is at a distance, it is very useful.

I go to the theatre a lot in particular, so I often have audio description there, using a headset that they give you. So that’s really useful. And the other great thing about the theatre is that I get to go on touch tours, which means I can go up on stage and see the set, costumes, props, etc close-up, and sometimes I even get to talk to the actors and other people who work on the show. So that’s really cool.

Conclusion

So that’s what my eye conditions are. They can’t be cured, but I’m fine with that. I’ve had them all my life, so it’s always felt normal to me. And it’s not stopped me from making friends, being successful, going out and having fun. It hasn’t stopped me living my life the way I want to. I just have to do things a little bit differently sometimes, that’s all.

So I’m just a normal person, with feelings, desires, interests and a sense of humour. And I still get shy and nervous sometimes too. But I’m much more confident than I was when I was as a kid. So things are going very well at the moment, I’m happy with my life right now.

So that’s it. I hope you found it interesting and insightful, and you’re always welcome to ask questions of course. Thank you to the school that invited me to give the talk, and thank you for reading!