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Hi, my name is Glen, I'm 33, and I have aniridia.
Aniridia means I don't have an iris in my eye. So 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, things like that.
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 yeah, 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, but it does mean I can't focus clearly on
things at ad distance. So I can't read signage, I can't drive because I can't read registration
plates, things like that.
So if I'm using a computer, I will zoom in on things a lot of the time. 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, a little mini telescope
that I have.
But here I want to focus on aniridia, because it's Aniridia Day, and I want to answer the
two questions being posed for the Shining Success campaign. So 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 forgotten about. 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 gonna 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. And, yeah, it gave me a lot of confidence,
a lot of enjoyment, and I'm really, 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 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 been now 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, say, 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, it's wonderful,
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 gonna happen, so I just wanna make the most of it, because
you only get one life, so just live it as 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 all sorts of places like
that. So that was great, I'd love to go back there, to see those places again, and to see
other parts of the United States.
I'd 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. And even in the UK
I've never been to Scotland, I'd love to go there. I'd like to go back to Wales, I've
only ever been there once. I'd like to go to Ireland, and even other places in England
that I've never properly explored.
So 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.
So yeah, that's it, I just wanted to make this a short video. If you want to find out
more about me, I do have a blog at welleyenever.com, and that's with the word eye in the middle.
So W-E-L-L-E-Y-E-N-E-V-E-R dot com. And on there you'll find links to my Youtube channel,
where I've posted various videos about my disability and on the things I've got up to.
And I have a Twitter page and Instagram as well. So feel free to check all that out.
And thank you if you're doing things for Aniridia Day as well, whether it be videos like this,
or posts of this nature, or just anything that spreads the word and brings people together,
to celebrate people's successes and achievements with aniridia. It is the first Aniridia Day,
so we want to make this the biggest success we can.
And yeah, that's it. Thank you for watching, I hope you enjoyed it. Bye!