How I See (RNIB #HowISee Campaign)

One of the common misconceptions about those of us with visual impairments is that we have no sight at all. It’s as if some people think eyesight is on or off, like flicking a light switch. I’ve had people assume this about me in the past, and have even had people telling others that I’m blind, because they don’t know how to explain it properly.

But the fact is that 93% of people who are registered partially sighted or blind can see something. Every single visually impaired person sees the world in their own unique way, some better than others. It’s a huge spectrum. So don’t assume that a visually impaired person cannot see at all, because 93% of the time you’ll be wrong.

The RNIB are spreading awareness of this simple fact using their #HowISee campaign. They have been asking people to make short videos about how they see, and this is my contribution. It’s had a big reaction on Twitter and Facebook already, so please do feel free to share it and help spread the message.

In my case, I have fairly good vision, I can generally see things around me at least. But I struggle to see things at a distance, like signs and details on objects. They have to be close up to me in order to read them and see the detail. Having large print, or being able to zoom in on a computer screen or smartphone, makes things a lot easier too. I have that difficulty because of a condition called nystagmus, which makes my eyes shake and wobble about all the time. And therefore I can’t maintain a focus on anything for very long.

I also have a condition called aniridia, which means I’m more sensitive to bright sunlight and glare, and find it harder to adjust in the dark. And that’s because I don’t have an iris in my eye. The iris would normally adjust the size of the pupil to determine how much light goes in and out, so without that adjustment it’s much harder for me to adjust to bright light and very dark situations. I only manage it to a very limited degree, and any adjustment is very slow to happen.

But I’ve managed fine with those conditions. It hasn’t stopped me getting a job, it hasn’t stopped me socialising, it hasn’t stopped me getting out and about. I’m perfectly happy, I’m perfectly independent. It’s just something I’ve had to adapt to and deal with ever since I was born. It’s not stopped me having a good life.

So remember, never make assumptions. Just because a person says they’re visually impaired or blind, it doesn’t mean they cannot see anything at all. 93% of people who are registered as blind or partially sighted do have some level of vision. It’s a huge number.

Check out the RNIB’s #HowISee campaign and their #HowISee video for more information, and follow the #HowISee hashtag on Facebook and Twitter to see what other people have been posting about their own conditions.

Feel free to submit your own videos or blog posts about your experiences too, using the #HowISee hashtag. The more people that get involved, the better, so we can raise awareness of the many visual impairments that exist. Let’s get the message out there. 🙂

Update: In January 2018, the RNIB included extracts from my video in their compilation of people’s contributions, as you can see below.

Author: Glen

Love London, love a laugh, love life. Visually impaired blogger, culture vulture & accessibility advocate, with aniridia & nystagmus, posting about my experiences & adventures.

17 thoughts on “How I See (RNIB #HowISee Campaign)”

  2. Glen, this is brilliant and so important. I think there is a greater level of understanding of or at least wanting to spread awareness about, visual impairment in your part of the world. I am going to share this with everyone I know so they can learn from you and your experiences. Thank you for sharing!

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  4. Thanks for sharing your video and great blog! It’s the best one I’ve seen so far from someone who has visual impairments. May I ask your thoughts on what do you think affects your vision more? Aniridia or nystagmus? For example, you might believe aniridia is 35% of the reason for worse site and nystagmus is 65% of the reason? How do you think your vision would be if you just had nystagmus? Further, do you think your eye movement has slowed/changed since you were a baby?

    I have a close relative who is 7 months old who was diagnosed with pendular nystagmus. His eyes sway horizontally, and are not fast twitching as I’ve seen some. We won’t know how well he’ll see until about 4 or 5 I guess, when he tells us.

    Thanks,

    Sam

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    1. Hi Sam, thanks for your kind words, I’m glad you like the blog! Thanks for the interesting questions too.

      Having never had either condition in isolation, it’s hard to quantify the effect they each have. There is a level of crossover, and one is responsible for the other (nystagmus came as part of the package deal with aniridia, as it does for other conditions too – doesn’t for everyone, but the odds of it are high in my case).

      I would say nystagmus affects me more though, as I always notice its effects. I always have dodgy distance vision, I always need things close up to read them. Aniridia is more about sensitivity to light and difficulty to see in the dark, so when I’m indoors under general lighting conditions, I’m often ok. And I can reduce the glare from computer screens by inverting the colours. But I still notice the effects of nystagmus even when the lighting’s right (I don’t notice the shaking unless my eyes are really tired, it’s just the effects it has on my focusing that I notice most).

      So when I’m indoors in comfortable lighting, nystagmus is the most dominant, so could be like 75% of the reason for my poor sight. When I’m out and about though, the aniridia affects me much more, so it’s much more 50/50 between the two, possibly even 80/20 in favour of aniridia if it’s particularly glary or dark.

      If I just had nystagmus, my distance vision would still be bad. The absence of aniridia probably wouldn’t change that – as I say, under the best lighting conditions, I still can’t focus on things at a distance. If I just had aniridia instead, though, then maybe my distance vision would be a bit better than it is. Although even that’s not guaranteed. Aniridia still has its own effects on distance vision – even though light sensitivity is the most obvious outcome, it can have other effects as well, depending on what variant and severity of aniridia you have.

      My nystagmus isn’t going to get better, but it might not get any worse either. My sight in general is likely to get worse over time though, but due to other effects. I’m more likely to develop glaucoma and cataracts for instance. So the only thing I can do is attempt to stabilise it if I notice any deterioration (e.g. if I develop cataracts, they could be removed). I haven’t noticed anything getting worse yet though – as far as I can tell, my sight has been stable so far. Of course, it could be that any deterioration has been so slow and gradual that I haven’t noticed. That wouldn’t surprise me.

      It will take time to see what effects it has on your young relative. But nystagmus won’t stop him living a full and happy life. Like any child, disabled or not, he still has a lot to learn about the world around him, and to find the best ways to interact with it. It’s just that he may have to adapt to do things slightly differently to his normal sighted peers. And he’ll be able to do that with the right support and visual aids as he grows up. So as long as he can get the support he needs as he goes along, he’ll be fine. 🙂

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      1. Thanks for your thoughts glen. Have you met others with nystagmus? Also, are there actually folks you know with nystagmus who have pretty good visual acuity e.g. can see road signs, bikes, balls coming to them, etc? I spoke to someone with nystagmus who said he has 20/20. That said, he still doesn’t have perfect vision.

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      2. I’ve met and am friends with lots of people who have it, yes. I went to a school for the visually impaired, so grew up knowing other children with a whole spectrum of conditions, including nystagmus in quite a few cases. And I’ve got to know more people with nystagmus since moving to London, as a result of my blogging and hooking up with VI social groups. Plus I attended (and spoke at) the Nystagmus Network’s Open Day a month ago, where everyone has it. There’s a lot of us out there!

        The effects of nystagmus do vary, so there have been people who are a bit better at things than me, sure, either because their nystagmus isn’t quite as bad, and/or they don’t have the additional condition of aniridia that I have, which complicates things in my case. So now and again I’ll be with someone who can make out things like signs a bit easier than me, and as a kid one or two of my friends were better at some video games than me because their reactions were quicker. I don’t personally know anyone with nystagmus who can drive, but if it’s minor enough then it’s potentially possible. It wouldn’t surprise me if there were a few drivers with nystagmus out there.

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