Living With Aniridia (Video Transcript)


This past month I’ve started to make more use of my Youtube channel, and I hope to continue making more videos now I’ve got into my stride a bit. At the moment, the videos are based on my blog posts here, but they’re not direct copies of them. And I know that not everyone will want, or be able, to watch videos.

So I though it would be useful to post the transcripts here as well, as I had them written for captioning purposes anyway. And within the text, I’ll also include descriptions of the visuals, for those who can’t see what’s going on. So here’s the first of my new videos…

Living With Aniridia

Description

In this video I describe my experience living with the eye condition Aniridia. It basically means I don’t have a fully-formed iris in my eye, which controls the size of the pupil based on light conditions. As a result, I’m very sensitive to bright light and glare, and I find it very difficult to see in the dark. But I’ve lived it with it all my life, and I have ways of working around it, so it hasn’t stopped me being happy and successful and doing things I enjoy.

This clip is adapted from my blog post about Aniridia. I also have a related condition called Nystagmus, which I’ve created a separate video and blog post about. There are more videos about my disability and my experiences living with it in my disability playlist.

For more information and support about aniridia, check out the list of links on my disability links page.

Other links in the video:

And finally, I’m on social media at these links:

Thanks for watching! 🙂

Transcript

[Video shows a close-up of my eye, with the heading “Aniridia”.]

Hi everybody. In this video I’m going to talk about one of the eye conditions I have, which is Aniridia. The important thing to make clear from the start is that, although it can make things a little bit difficult sometimes, the fact is that I’ve had it all my life, so I’m used to it, I know how to deal with it, and I’m comfortable living with it. So I’m happy.

[Video shows a close-up of a normal person’s eye, which has an iris, unlike my own.]

Aniridia basically means I don’t have a fully formed iris in my eye. The iris is the coloured ring around the pupil, which is what people refer to when they say they have, say, green eyes or blue eyes or whatever. So I don’t have an eye colour particularly, unless you want to call it black.

[Video shows a diagram of the eye, with labels pointing to the cornea, iris, lens, and other parts of the eye behind it.]

But the iris does have a purpose, it’s not just there to look nice. It’s basically a muscle that controls the size of the pupil, to determine how much light enters your eye. So, if it’s very bright, the iris will shrink the pupil to let less light into your eye, so it doesn’t blind you. And when it gets dark, then the iris will expand the pupil to let as much light in as possible, to try and help you see things better.

[Video shows another close-up of my eye, which is shaking as well due to my other condition, nystagmus.]

So because I haven’t got a proper iris, I can’t control how much light enters my eye. They do adjust to an extent – I think there is some remnant of the iris muscle there – but certainly nowhere as quickly or effectively as it would for a normal-sighted person. So if I’m going into a relatively bright or dark space, it can be quite difficult sometimes.

[Video shows a road by the seaside in sunny Spain. The roundabout has some tall poles in the centre, each with horizontal branches sticking out, which hold lots of mini windmills.] 

Going outdoors into bright sunlight can be particularly frustrating or difficult sometimes – not just because the sun itself is bright, but also all the surfaces that it bounces off. There can be windows, any walls that have light colours, and cars that have light colours… they can all cause glare to reflect and hit me from all angles, which I struggle to deal with sometimes.

[Video shows white birds on a rocky island in the middle of a pond, filmed in a park in sunny Spain.] 

And if it’s recently been raining and then the sun comes out, then that can get even worse, because the sun then gets reflected off all the layers of water back into my eyes as well. So the glare is coming at me from even more angles then.

And if my eyes are tired, that makes it quite difficult as well. And if I’ve got a cold, or even if I’ve just sneezed shortly beforehand, then my eyes also get quite sensitive, because there is a connection between the sinuses and the eyes. So in the worst cases, when the glare gets really bad, my eyes will start watering and blurring my vision, and I’ll struggle to even keep them open, because it’s just too blinding.

[Video fades to bright white, to represent blinding light, then shows me wearing my anti-glare sunglasses, turning my head to show how they block off light from the side and above.] 

So to get around all that, I have a pair of anti-glare sunglasses that do help a great deal, especially because the glass extends above, below and around the eyes, to reduce the glare that comes in from all sides – which normal sunglasses don’t do, they just stop light coming in directly in front of you. So these glasses are particularly useful for me.

Some days are better than others of course – a lot of the time I get around reasonably well. But if it’s a really, really bright day, or if my eyes aren’t in a very good mood, then there’s only so much the glasses can do. But even then, they do still take the worst of the glare off, so they do still help.

[Video shows the view overlooking Guernsey harbour in the distance, with one large ferry visible. There are buildings and greenery between the harbour and me. Clouds are obscuring some of the sunshine.] 

And it’s not just in bright sunlight I might have to wear those glasses. Even if it’s a cloudy day, I may still need to wear them – if my eyes are particularly sensitive, or if there’s a bit of glare reflecting off the clouds, or if the sun’s out and I’m in a shadowy area, the sunlight may still be reflecting off buildings near me.

So it’s not unusual for me to wear sunglasses even when I’m not in the sunlight, if I do feel the need to occasionally. Inside buildings I’m generally fine, the lighting usually isn’t too glary then. But outside, glare is more likely to problem. Grey and dull days are certainly easier for me, but I still prefer going out in the sunshine because everything looks and feels a lot nicer then, and I have the glasses to help me feel comfortable.

So I always make sure I have my glasses handy, just in case I need them. If I’m only walking a really, really short distance, I might not bother with them and will put up with the brightness for a very brief moment or two. But I can’t really deal with it for very long.

[Video shows a scrolling view of my blog, with the standard white background.] 

The effect of glare also extends to computer screens, where you have light backgrounds on a lot of programs. You know, word processors have white pages that you type on, Explorer or Finder windows where you look at your files have white backgrounds, iTunes has light background colours, websites and emails normally use white backgrounds… all sorts of programs have bright coloured backgrounds with dark text on top.

So it’s quite glary and tiring on my eyes to look at that, to try and focus on the text and the buttons and things like that. I can do it for a short period of time, but it does soon become a strain on the eyes, so I can’t do it for very long.

[Video shows a photo of an old, bulky computer monitor with a glass screen.] 

In the old days, when you had those big, bulky, CRT monitors, then those glass screens were particularly reflective and glary. Modern flat screens are better, certainly, but it’s still difficult to focus on them when they have light backgrounds, because I still have to work hard to focus on the text that’s on the screen.

[Video shows an extract from my aniridia blog post, with the brightness being dimmed and then turned back up again.] 

And it’s not just a case of turning the brightness or the contrast down, because that just makes things harder to read in general anyway. I do need things to be sharp and clear, with good contrast to the background so it stands out.

[Video shows the toolbar of the Supernova magnifier software I use, with some options expanded or more detail. Buttons include zoom size, magnification view (full screen, fixed windows, magnifying glass, etc), colours (e.g. negative, greyscale, high contrast, yellow on blue, green on black, etc), highlighting, mouse pointers, etc. Caption shows the address of the Dolphin website.] 

The way I work around all that is to use accessibility software. At work I have a Windows PC, and I have a program called Supernova from a company called Dolphin on there, which allows me to alter the display in all sorts of ways to make it easier to work with. It also has speech output to help blind people navigate the screen if they need it, but I don’t use that particular feature.

[Video shows a screenshot, and the address, of the Access To Work website.]

The software was purchased for me under the Access To Work scheme here in the UK, which helps to fund accessibility products and services that disabled people need to do their jobs. And there are other software programs available that do similar things to help visually impaired people, I must say, but Supernova is the one that I’ve chosen to use.

[Video shows screenshot of Windows Ease Of Access control panel, with options for making the display, mouse or keyboard easier to use, or to use the computer without one of those items. Display assistance include high contrast, narration, audio description and magnification.]

Windows does have its own accessibility features built in – but, as with many visually impaired Windows users I know, I’ve always found the built-in features too basic and they don’t work quite as well, or do exactly what I want them to. So many people end up buying separate software instead. I don’t know if the latest versions of Windows, like Windows 10, are any better in that regard… maybe it’s got better over the years… but the features on Windows XP and Windows 7 weren’t of much use to me.

[Video shows screenshot of Mac Accessibility Display preferences, with options to invert colours, increase contrast, use greyscale, reduce transparency, change cursor size, shake mouse pointer to locate, and more.]

At home, on the other hand, I use a Mac, and that comes with accessibility features already built in, so it’s really easy. Apple have added all sorts of special accessibility features to all their products, and it’s wonderful.

[Video shows an extract from my aniridia blog post. It has a white background and black text to begin with, but a ‘wipe’ effect from top to bottom changes it to a black background with white text instead.] 

So at work and at home, I’m able to use these accessibility features to turn the screen from a standard view to a negative view, so that I have a black background with white text on it. And that makes a huge difference to me, because it makes it so much easier. The contrast is so much better, there’s no glare, it’s nowhere near as tiring on the eyes.

[Video shows a long flowerbed, filmed in a park in London, with clusters of different coloured flowers. The image switches to negative view, to show how strange it looks, and then goes back to normal.] 

It looks a bit odd to other people of course, especially as it turns everything negative, not just the black and white colours, but everything. So it does look a bit weird sometimes. But I am able to change the colours back to normal. If I need to see a picture or a video properly, or if I need to see the actual colours of a document I’m working on, then I can quickly tap a keyboard shortcut and look at the colours as they’re supposed to be. And then I can flip it back again for reading and typing stuff. So I often flip between the two when I’m working.

[Video shows me carrying out the following instructions, first with the mouse arrow on my Mac screen, and then an overhead view of my fingers on the keyboard.]

On the Mac, for instance, the option to Invert Colours is under System Preferences, Accessibility, Display. But it’s a lot quicker to use the keyboard shortcut. To do that, you have to hold down Ctrl, Alt and Command… which are the 3 keys to the left of the space bar on my keyboard… and tap the number 8. That will flip the display from positive to negative, and vice-versa. If you try that keyboard shortcut on a Mac and it doesn’t work, then you may need to activate it first, by going to System Preferences, Keyboard, Shortcuts.

[Video shows busy streets in New York at night time.]

But it’s not just brightness and glare that’s an issue – darkness can be a problem as well. If I’m walking outside in the dark for instance, it can be quite difficult, and even dangerous, especially if the streets aren’t very well lit. I do have to be very careful, more so than normal-sighted people. So I don’t like to go down dark streets on my own if I can avoid it – not just for safety from anyone who might be lurking there, but also because it’s just far easier for me to walk into things and trip over. So I do try and stick to well-lit areas when I can. Even if that means I have to walk a little bit further and not take the most direct route, I’d much rather go the safer way.

[Video shows a girl and a boy walking into a small, furnished hut, which I filmed in the grounds of a youth hostel in West Virginia. It’s sunny outside, but as we walk through the door, the picture goes very dark for a few seconds, to show the problem I discuss next, before brightening again.]

And even in the daytime, darkness can be a problem. For instance, if I’m outside in the sunshine, and I go indoors into a pub or restaurant that’s got a relatively dark interior, I might not be able to see anything at all to start with. It will take my eyes a bit longer to adjust than it would for other people.

[Video shows a heavily darkened view of a walk down a corridor, with only tiny bits of light visible.]

So if I’m going into a pub with a friend for instance, I may just hold on to their shoulder until my eyes have adjusted, so they can make sure I don’t lose them or trip over anything. My eyes do adjust gradually, so I’m usually ok after a couple of minutes – but it’s a lot slower, and they won’t adjust to the same extent that they do for everyone else. So if the lighting isn’t that great, it will continue to be difficult, even after my eyes have adjusted.

[Video brightens to show the corridor is in a hotel, which was filmed in Spain. We enter the bedroom and walk through it to another door, which leads to a balcony, where we get a view of a swimming pool, other buildings and a few trees in the sunshine.]

I know that may all sound like having Aniridia is really frustrating and difficult. And, yes, there are moments when it can be. It can be awkward, and if my eyes are tired or are just not behaving themselves properly, which happens occasionally, then yes, it is difficult.

But the majority of the time it’s fine, it doesn’t bother me. I’ve learned to live with it and I’ve adjusted to it, because I was born with it. As far as I’m concerned, and as far as my brain’s concerned, this is normal, because I’ve never known any different. I don’t know what normal sight really is, and I don’t feel I’ve lost it, because I never had it in the first place.

So I don’t regard it as a problem. It’s a bit of a nuisance sometimes, but it’s not a showstopper. It’s not something that stops me living my life and doing the things I want to do. I have friends, I have a good job, I can get out and about by myself, and so on. It’s just something I cope with and deal with, because I have to. It’s as simple as that really, I just don’t let it get in the way.

[Video shows screenshots of the following websites.]

So I hope you found that interesting. There are obviously organisations and support groups out there who can talk about it with a lot more authority and knowledge and professionalism than I can. In the UK you have Aniridia Network UK, who are at aniridia.org.uk. Or there’s also Aniridia Foundation International, who are at www.make-a-miracle.org. So they can give you a lot more information if you’re interested.

[Video shows my blog address and Twitter name over a blue sky with clouds quickly passing across.]

But for now I hope this video gave you an interesting insight into how things work for me, so thank you for watching and listening. Bye!

Author: Glen

Vsually impaired, with Aniridia & Nystagmus. I'm a fan of Doctor Who, classic sitcoms, Queen and 60s-80s rock & pop. I like to blog about my experiences as a disabled person, and about the things I enjoy in general.

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