Happy Aniridia Day! 🙂
Today we’re celebrating people’s achievements and ambitions with Aniridia, as part of the Shining Success campaign, for which I edited a promo video I’m very proud of. There are also Facebook and Twitter pages for the day, where people are sharing their stories, photos and videos to mark the occasion, so please do check them out.
It’s already bringing people together with aniridia who have never met before, and helping to spread a positive message of positivity, support, solidarity and hope for the future. And if you want to find aniridia support groups, the links on my Disability Links page may help.
So this post is my contribution for the day, talking about my own achievements and ambitions, as someone living with aniridia. It’s an adaptation of the transcript of my video for the occasion.
Hi, my name is Glen, I’m 33, and I have aniridia.
Aniridia means I don’t have an iris in my eye. This means I can’t control the size of my pupil to determine how much light enters my eye, so I’m much more sensitive to glare and bright sunlight, and I find it harder to adjust in the dark too.
So I’ll often be wearing sunglasses when I’m out and about. Even when it’s cloudy there may be enough glare off nearby buildings, or the pavement, or other structures nearby, or even the clouds themselves, or if it’s been raining the reflections can be made worse from that as well. So I do need to wear sunglasses fairly often. And on computer screens, I will invert the colours, so there’s a black background with white text on it. because that’s much easier on the eyes than the white backgrounds that many programmes have.
I also have nystagmus, which means my eyes wobble and shake involuntarily all the time. I don’t notice that shaking in my vision, unless I’m stressed or tired, but it does mean I can’t focus clearly on things at ad distance. So I can’t read signage, and I can’t drive because I can’t read things like registration plates or generally focus clearly on the road ahead.
So I need things close up to read them. If I’m using a computer, I will zoom in on things a lot of the time. And if I’m reading things on paper, I will either use a magnifier or just hold it up close, or get large print. And for looking at things at a distance I will use a monocular, which is a little telescope that I have.
But here I want to focus on aniridia, because it’s Aniridia Day. So I want to answer the two questions being posed for the Shining Success campaign. And the first question is – what are your greatest or most unexpected successes and achievements?
For me, my greatest successes would be getting a 2:1 degree in Accounting and Finance at university. And then 6 months after that, I managed to get a job, providing IT support for a printing firm, and I’ve been doing that job for 12 and a half years now. I enjoy it very much. It’s very varied, there’s always something different going on each day, and I get on very well with everyone in the company.
And more recently, I was Best Man at my best mate’s wedding, which was a great honour. And I’d never given a speech before in public, other than a mock election we did at school when I was really young and I’ve largely forgotten about (and I actually won it, though I don’t know how!). But I normally don’t like getting up and speaking in front of people, so this was quite a big deal. But obviously for my best mate I was more than happy to do it. And I spent a good deal of time thinking about the speech, and what was going to be in it, and writing a couple of jokes for it.
And it worked really well. I thoroughly enjoyed the day, I thoroughly enjoyed giving the speech. And everyone else enjoyed listening to it as well. So it gave me a lot of confidence, a lot of enjoyment, and I’m really glad I did it. It’s not something I would ever have imagined doing many years ago, so it’s just been another step forward in the confidence that I’ve grown in over the years.
In terms of unexpected successes, I recently moved to London 6 months ago, which certainly wasn’t the plan when I was younger. It was always a dream, but I never thought it would happen. But through various events happening, it just worked out that way. So now I’m here, I’ve been getting out and about a lot more, which is not something I’d have imagined doing many years ago.
When I was young in school, I was teased and bullied to begin with, which meant my confidence was very, very low. But gradually over the years, as I gradually got the support I needed, as I gradually made new friends, as I gradually learnt new things, my confidence very slowly grew and grew, bit by bit, to the point where now I’m much more open and outgoing than I used to be.
So I’ve now been able to go out, using the internet to find social groups, to go to gaming nights and quiz nights, and to foodie evenings in restaurants, and to go out for drinks, and to go out to parks and museums with complete strangers that I’d never met before. And if I’d been as shy I was in the past, even just 10 years ago maybe, I wouldn’t have considered it, so it’s just the way things have worked out.
And I’m very happy that it has worked out that way. I’ve been learning a lot of new things, trying new things, meeting new people, and it’s brilliant. I’m loving it here!
In terms of ambitions for the future, I want to continue exploring London, continue making new friends, continue trying new things. I’m a member of a local disabled group, as well as the social groups I’ve joined, so there’s plenty of opportunities out there. And if it leads to career opportunities or relationships or whatever, then of course I’ll make the most of those as well.
It’s impossible to know what’s going to happen, so I just want to make the most of it, because you only get one life, and you have to live it the best you can. And certainly at the moment, things seem to be going very well, I’m very, very happy.
In terms of other ambitions, I’d like to see more of the world. I’d like to travel back to America, I visited there years ago. Went to the World Trade Center, and the Empire State Building, and Times Square, and Kentucky, and Washington, and so on. I’d love to go back there, to see those places again, and to see other parts of the United States.
I’d also like to go on a cruise, because I’ve had friends who’ve gone on cruises, it’d be nice to try that. I’d like to go to places like New Zealand, because that looks beautiful. And even closer to home I’d love to visit other places in Europe. Even in the UK I’ve never been to Scotland, so I’d love to go there. I’d also like to go back to Wales, as I’ve only ever been there once, and I’d like to go to Ireland. And there are loads of places in England that I’ve never properly explored either.
There’s so many places to go to, things to see, things to try. So I want to just try and keep exploring, keep learning new things, keep meeting new people, and just making the most of my sight while I’ve got it, making the most of my life, and just enjoying myself, which is what life is all about.
If you want to find out more about me and my experiences, feel free to check out my other posts in this blog – including those relating to disability in particular, if you want to find out how I live with it. There are also plenty of posts about the things I enjoy and get up to in general as well. And there’s a similar mixture of content on my Youtube channel too. Plus you can follow me on Twitter and Instagram too. So do feel free to check me out in all those places.
And thank you if you’re doing things for Aniridia Day as well, whether it be videos, posts, podcasts, Facebook posts, tweets, or whatever. It really does help to spread a positive and supportive message that brings people together, to celebrate people’s successes and achievements with aniridia. We want to make this the biggest success we can, especially as it’s the first Aniridia Day.
So that’s it. Thank you for reading, I hope you enjoyed it and found it interesting!