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! 🙂

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.

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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.

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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 combined this with yet another first – recording a proper travel vlog, the pilot episode of “Glen Cam”! I didn’t film inside the event, but I recorded myself before and after. I’m currently editing it all together, so you’ll be able to see that on my Youtube channel very soon.

But I wanted to write in detail about my experience as well, 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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Meeting Fashioneyesta

If you’ve been following me for a while, you’ll know that one of my favourite Youtubers is Fashioneyesta, aka Emily Davison. And this Monday I actually got to meet her and spend the day with her, much to my delight. She’s now posted a wonderful vlog of the day on her FashioneyestaExtra channel, so I wanted to blog about it from my own perspective as well.

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Guest Post – The Best Festivals For Accessibility

This is the first guest post I’ve ever had on this blog. And it doesn’t have to be the last – if any of my blogging friends would like to collaborate on something, especially those that I already follow and enjoy, then I’m open to ideas.

This post is from the Ability Superstore Blog, where they regularly post useful advice and links for disabled people on a variety of topics – in this case talking about accessibility at music festivals. I love music and going out and about, so this is a perfect topic for me.

This is being posted at the same time as a guest post by me on their site. It’s all about how I’ve grown in confidence over the years, so please go and check it out!

Thank you so much to Natalie for inviting me to do that, and for giving me permission to reproduce her post below in return. I hope you enjoy it! 🙂

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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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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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