Q&A – My Aniridia & Nystagmus

A few of my recent posts about my visual impairment have become very popular, which has been wonderful of course. In large part this is because the RNIB have very kindly shared them, which has enabled them to reach a huge audience.

The posts in question are Room 101 – My Visually Impaired Frustrations (which is also on the RNIB Connect website in edited form), my How I See video (which has had an overwhelming response on their Facebook page) and my Nystagmus Tag (which has had quite a few shares since RNIB’s retweet. Thank you to everyone who has liked, shared and commented on all of that, it’s very much appreciated.

As a result of those posts, various people have got in touch with questions relating to my conditions. I’ve answered them all either privately or in the comments area they were posted in. But I thought I’d summarise the questions and my responses here as well, in case others find it useful.

Thank you to Sam, Charlotte and Nadine for the questions in this post, I’m happy to help as best I can. And if any of you reading this want to ask me anything about my visual impairment, or anything else for that matter, then feel free to comment here or on my Twitter or Facebook feeds. I’m happy to do more Q&A posts like this if people wish.

So here are the questions and answers. I hope you find it interesting and useful. I’ve also made a video of my responses as well.

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Fireworks & Frankenstein, Sight Village & Socialising

Time for another little update on what I’ve been doing recently, as I was pretty busy at the beginning of this week, watching a fireworks display, attending another theatre show, going to a disability exhibition, and meeting other people with aniridia.

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Nystagmus Tag

Today, November 1st 2017, is Nystagmus Awareness Day (aka Wobbly Wednesday), set up by the Nystagmus Network here in the UK. Nystagmus is a condition where the eyes shake and move involuntarily all the time, which makes it harder to focus and concentrate on things. It can come as part of the package with other eye conditions or on its own, and it has different levels of severity in different people. So it’s a very varied condition. For a detailed explanation of how it affects me personally, check out my Living With Nystagmus post and video.

To mark the day, I’ve been tagged to answer some questions on nystagmus by Youtuber Jessica King (Jessylrk) – thank you Jessica! And if you have nystagmus too, then I tag you to do this as well. So here are my answers to the questions, and I hope you find them interesting. You can also watch a video of my responses as well.

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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.

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Aniridia Day – My Shining Success Story

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. This is also available as a video as well.

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Aniridia Day – June 21st – We Need You!

As you may know if you’ve followed me for a while, I have the rare eye condition Aniridia. It basically means I don’t have an iris in my eye, and as that would normally control the size of the pupil, it means I’m more sensitive to natural light and glare than normal people and find it harder to adjust in the dark. I also have nystagmus, which many people with aniridia also have, but I want to talk about aniridia specifically here.

I’ve written about Living With Aniridia before, and posted a video as well, so they should help to explain what it is, at least from my perspective. Plus there are links to organisations connected with Aniridia on my Disability Links page.

So this post relates to that, as it’s about the first ever Aniridia Day that is being held on Wednesday June 21. If you can share this information, or just something like the video, website, Facebook or Twitter pages I’m about to mention, in as many places as possible, it’d be very much appreciated! And please do RT the stuff I keep tweeting and sharing about it on my own Twitter feed as well.

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Springing Into Action

It’s been a couple of months since I last made a post here. So now that Spring is upon us and the weather is improving, I thought I’d do a bit of a catch-up to let you know how things are going, as I have been busy lately. So this is going to be a long mixture of all sorts of things.

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