Visually impaired accessibility advocate, culture vulture & London explorer
Author: Glen
Love London, love a laugh, love life. Visually impaired blogger, culture vulture & accessibility advocate, with aniridia & nystagmus, posting about my experiences & adventures.
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.
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.
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!
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.
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.
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!
Last night I had my first ever vegetarian meal at the Redemption Bar in Shoreditch. And I had the privilege of dining there in the company of Emily Davison from Fashioneyesta, this now being our third meeting together since Knole Park and the Jack The Ripper tour recently. And again we had a lovely time.
Emily looked stunning as per usual, and you can see a detailed description and photos of her outfit and makeup in her blog post about the day.
Someone seems to be rather keen to pose as Santander at the moment. Over the past couple of weeks, my Junk filter has picked up 4 emails – the latest 2 being just a day apart. They’re all coming from the same place too, and have a lot in common. Indeed, the latter 3 emails are practically identical, they mainly just have different links.
They’re all claiming there’s been a security issue with my account, so I need to verify myself. They all have from addresses with the same domain. They all have links constructed in a very similar way, with subtle differences. And the formatting and grammar of the body text isn’t great in parts. So I’ll show you the text of the emails, and then highlight why they’re obviously nonsense. And don’t forget you can check out all of my scam email posts to see other examples I’ve highlighted.
Last weekend was the Open House London weekend, where hundreds of buildings across the capital opened their doors for free for the public to look around and take part in talks and tours. These include many places that you might never have heard of or never considered visiting before. Some of the places also do tours during the rest of the year, but you may have to pay for them, whereas on this weekend they’re free. And some places may rarely grant public access at all, so this may be the only opportunity you get to look around. So it’s a great initiative that’s been running for 25 years now, and the volunteers who help to make it happen deserve thanks and praise for their work.
As part of this event, the team at VocalEyes arranged special audio described tours of 4 different buildings for visually impaired people. I went on 3 of them (I didn’t do the 4th as I had something else planned). It was my first time going to an Open House weekend, and I thoroughly enjoyed it. So I’ll definitely be keeping an eye out for it next year. So here’s my summary of the tours I went on.
Well Eye Never 
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