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.
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, hello and welcome! 🙂
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. I’ve written blog posts about how I prepared for it and my experience at the Open Day, as well as publishing a vlog of my trip on Youtube.
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.
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.
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.
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.