Glen – Page 34 – Well Eye Never

Aniridia & Nystagmus Q&A

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, 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 the RNIB retweeted it. 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.

So 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, including a video of my responses as well. I hope you find it interesting and useful.

Travelling Around London

In my previous post I wrote about how I plan unfamiliar journeys to make it easier for me – using apps like Citymapper and Google Maps to plan routes, and Street View to virtually walk the routes them. So now I want to take about my actual experience of travelling around in London.

I know that some people find it much harder to travel around London due to more severe visual impairments, other mobility issues, anxiety and confidence issues, and so on. And that’s all perfectly understandable. So this won’t be reflective of everyone’s experiences. It’s just my own account of how I’ve personally settled into it and how I got about things. Your experiences may differ significantly depending on your situation.

It’s also worth noting Transport For London’s Accessibility page as well, as that has lots of info on it that people might find useful if they’re travelling in the city.

So with that out of the way, let’s get on to how I find travelling around London. I’ve also made a video to go with both this and my previous post, so you might like to watch that as well.

Planning My Journeys In London

I’ve been posting a lot about what I’ve been doing in London, but I haven’t talked much about how I actually get around such a big city. I did discuss it in a post I did last year when I visited London with a friend, and briefly when I visited Sight Village in 2016, before I actually lived here. But now I’ve been a resident here for a while, and as new followers have asked about it recently, now’s a good opportunity to revisit the topic in more detail. So I’m going to split this over a couple of posts, starting with how I plan my journeys before I actually do them. Then in my next post I’ll talk about what it’s like travelling around.

I’ve also made a video to go with these posts, which you may like to check out as well.

October 2017 Favourites

Hey there, welcome back for another big update on what I’ve been getting up to. As usual it’s been a very busy month, as I’ve enjoyed an audio described exhibition and theatre show, a couple of fun tours, events involving lots of chocolate, my first ever afternoon tea, a guest appearance in a special Youtube project on a football field, a craft show in a beautiful setting, a classic scary movie at the cinema, and more. So I hope you find this compilation interesting as usual!

Nystagmus Tag

Today 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.

How I See (RNIB 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.

September 2017 Favourites

Hello again, nice to have you back for my next roundup. It’s been my most significant and eventful month of the year so far, with my first ever public speech, a holiday overseas, a walking tour and a meal with a fellow blogger, audio described tours of an art exhibition and a few special buildings, a day trip to another town, and a music and drama workshop. So I hope you enjoy!

Building My New Social Network With A Visual Impairment

I’ve shared overviews of this story as guest posts on Scope’s community forum and the Nystagmus Network’s newsletter. Many thanks to them both for featuring me! And if you’ve found me via one of those articles or a social media promotion, hello and welcome! 🙂

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On September 30th, I gave a talk at the Nystagmus Network’s Open Day about how I had been building a new social network for myself in London. It was my first time giving a public speech about myself, but it went really well. I spoke for about 15 minutes, then we had a group discussion for the next 15 minutes. It got a very positive response, and I got chatting to many people as a result of it, so I was very happy with it. And I’ve written blog posts about how I prepared for it and my experience at the Open Day.

So this post is a written version of that speech, and I’ve posted a video version that I filmed on the same evening. Both are longer than the actual speech I gave at the Open Day, as without constraints on time or length I’ve been able to explain things in a bit more detail. So the actual speech was a slightly more concise version of this, although 15 minutes was still quite a bit of time to fill!

Obviously my situation is unique to me, and everyone’s circumstances will be different in their own way. I’m just giving examples of the things I’ve done. The overall aim is to show that it’s important and worthwhile to try things that interest you and grasp opportunities when they arise, as you never know what will result from them. You may have to push yourself out of your comfort zone a bit, and I know that can be easier said than done. It was a challenge for me, and it still can be sometimes. But the more you try things, the more confident you’ll get, and you’ll soon start to reap the rewards of your efforts. Otherwise, you’ll always be asking yourself ‘what if’, which is never helpful.

So I hope you enjoy reading this. Thank you to Sue Ricketts and the Nystagmus Network for asking me to share my story at the Open Day, and to all those who responded to it so well.

Speaking At The Nystagmus Network Open Day

On Saturday, I attended the Nystagmus Network‘s Open Day in Birmingham, the first time I’ve ever been to an event of this nature. The only time I’ve previously met a group who share one of my eye conditions was after Sight Village last year, when I got together with a handful of people with aniridia in a coffee shop. And that was wonderful, but this weekend’s event was on a much bigger scale. This time, I was going to a big conference for people with nystagmus with hundreds of people in attendance. And I was very much looking forward to.

However, I was also nervous, because I had been invited to be one of the speakers – making this the first time I would ever give a talk in public about myself. I wrote in my last post about how this came about, and how I prepared for it. So now I want to tell you about the day itself and how it went.

Preparing For My First Public Talk

This weekend I was invited to attend the Nystagmus Network Open Day in Birmingham. Although I’ve been to things like Sight Village before, where I got to meet a handful of people with aniridia, I’ve never been to a large, dedicated conference for people with the same eye condition to network and find out information. So that in itself was going to be interesting.

But I wasn’t just a regular attendee – I was going to be one of the speakers! So that meant doing another first – publicly talking about myself and my life. This was naturally a daunting prospect, but exciting too. So I agreed to give it a go, it was worth a try.

And I wanted to write in detail about my experience, which I’m going to split over a couple of posts so it doesn’t get too long. I’m then going to publish a written article version of my speech here, and a video version on my Youtube channel, so you can see what I said, and maybe it will give you some inspiration and reassurance too. So I’ve got quite a bit to share!

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