Nystagmus – Page 2 – Well Eye Never

What Is Normal? (Documentary)

I still find it very humbling and flattering that so many people have taken an interest in my adventures over the past few years, whether it be reading my blog, watching my videos, or seeing me speak at events. I’m very grateful to everyone for the support and encouragement, and I wouldn’t be doing this if nobody cared, so thank you.

I never imagined that I’d have a documentary made about me though. Yet that’s exactly what happened for the first time a few months ago. It was an exciting experience and I’m delighted with how it turned out.

I’ve held it back until now for various reasons. Firstly, whilst I have permission to post it regardless, I wanted to give a bit of space for its creators and sponsors, including a major charity, to publish it first if they so wished. But I also had a few things distracting me over the summer too, as regular followers will know, which has further delayed it.

But now’s a good time to release it, as it ties in nicely with the recent publication of my Aniridia Network Conference talk – Growing In Confidence With Aniridia – which was filmed shortly after the documentary was completed. Soon after that I was also in a second documentary – See Differently by Yiwen Feng – which featured myself and others. You can find out more about my speech and that other film in my June Favourites. I was certainly getting my 15 minutes of fame around that time!

In this post, therefore, I want to share my first ever documentary with you, and give a behind-the-scenes insight into how it all came together. I hope you enjoy it, and please do share the film around on social media.

So without any further ado, I present my documentary debut – What Is Normal?

February 2019 Favourites

The time has come for another favourites post and video, looking back at February. It’s the shortest month of the year, and this is going to be one of my shorter Favourites posts, because there’s been a lot of behind the scenes stuff going on, in a good way.

In particular, I’ve been spending quality time with my girlfriend Claire, and of course we celebrated Valentine’s Day together, as well as meeting up regularly in general. So naturally I’m not going to write about anything personal here.

But also, a sudden influx of wonderful opportunities have come my way over the past few weeks that have filled up my calendar for March. I can’t say too much yet, but keep an eye out for a special guest post on Disabled Access Day on March 16th, a review of the Transport For London Access Day that I’m going to on March 19th, and later on some special cultural reviews. My blogging efforts have really been paying off lately it seems!

Also don’t forget to claim your free tickets for Naidex, Europe’s largest show dedicated to disability and independent living, on 26th & 27th March in Birmingham. You’ll see me posting a lot about it on social media as it approaches, because I’m an ambassador for them. This just means we exchange posts promoting each other, I’m not paid or gifted to mention them. I just really enjoyed the show last year, so I’m looking forward to going again.

Back to February though, and there are still some things I am able to write about, mainly focusing on museums and entertainment. As always, there’s a video to go with this post, and I’m not affiliated with or sponsored by anybody I mention here. So I hope you enjoy my latest roundup!

Out Of Orbit – My Charity Nystagmus Abseil!

We did it! 🙂 On Sunday 21 October, after a month’s delay due to the typical British weather, I finally got to do my charity abseil down the ArcelorMittal Orbit Tower in aid of nystagmus research. That’s a drop of 80 metres (262 feet) from the UK’s tallest sculpture!

It was my first ever fundraising challenge and my first ever abseil, and therefore a big deal for a beginner like me. And it was an amazing experience, which I’m excited to tell you about in this post. I’ve also made a video that includes headcam footage from my descent, so do check that out as well.

Donations closed on 23 March 2019, and I raised £920 (+ £143 Gift Aid)! Thank you all SO much! Everyone who donated prior to the initial publication of this post is listed at the end, and are also in the credits of my video (unless you were anonymous of course). But if you’d like to donate even though the deadline has passed, please feel free to donate to Nystagmus Network and/or Moorfields Eye Charity directly. Thanks!

So I hope you enjoy reading about my abseil adventure, including my fundraising achievements and what happened on the day itself! Thanks again for your support!

September 2018 Favourites

Time for another monthly update, and it’s fair to say that September was very busy and productive, as well as throwing up one or two surprises, which in turn are paving the way for a very interesting October. There is of course a video to go with this post, and I hope you enjoy this little catch-up as usual!

Nystagmus Network Open Day 2018

Even though my abseil for nystagmus research has had to be postponed (it’ll now be on 21st October), nystagmus has still been the big topic this month, because on Saturday I attended the annual Open Day held by the Nystagmus Network.

This was my second time going to this event, following my experience last year when I gave my first public talk. So this year was much more relaxed, because I didn’t have to do anything! And it was a wonderful day, so I thought I’d give an overview of how it went.

June 2018 Favourites

Time for another monthly favourites post and video, this time looking back over June. It was a significant month on social media for a few reasons, plus I also got to see 2 theatre shows, went out to a few museums and did a few walking tours in the nice weather. So there’s plenty to mention.

My Visual Impairment Aids & Gadgets

I use various things to assist me in my day-to-day life as a visually impaired person, just to make things easier or more accessible. It means I can be independent and do many things that normal people do. So in other words, I’m still leading a normal life, it’s just that I do some things a bit differently to people with regular sight.

Naturally my iPhone is a huge help these days, but I’ll talk about the features and apps I use there in a separate post. In the meantime, you can see a list of my apps here, with an older video about them that I’ll update when I do a new post.

So in this post and video I’m going to tell you about various other aids and gadgets that I use, and a few used by my mother as well, as she’s blind. I’m not affiliated with or sponsored by any companies mentioned here, and these are all my own opinions.

So I hope you find this post interesting. And let me know if there are any particular aids or gadgets that you use a lot, or if there’s anything you recommend I should check out.

May 2018 Favourites

May was a lovely month. The weather’s been gorgeous lately, for the most part, and with no major events going on it’s been quite a relaxing few weeks. But there are still various bits and pieces I’ve enjoyed, and want to mention in this latest post and video update. So I hope you find this interesting.

To start with though, I just quickly want to plug a couple of upcoming events in June that will interest some of you. They’re for people all over the world to join in with, not just the UK. The more the merrier really, as it will help to spread vital awareness in both cases.

June 20^th will be Nystagmus Awareness Day, which is its new permanent date, having moved from November. This year’s theme is Nystagmus In The Open, where people are being encouraged to do outdoor activities to raise funds and generate awareness. Sue, who runs the Nystagmus Network, is opening her garden for people to visit, for instance. People are also being invited to submit their stories online to show how amazing people with nystagmus are.

June 21^st will then be Aniridia Day. This is the second time it’s been held, as it was a big success last year. This year’s awareness campaign is called Aniridia Sight, where we want people with aniridia to share a photo or video of a scene, and describe how they see it through their eyes. So the more people that get involved, the more we can show how varied the vision of people with aniridia is. And then there will hopefully be live webinars too, for people to discuss aniridia related topics e.g. doctors, researchers, people with aniridia, etc.

So now that’s out of the way, let me tell you what I’ve been up to in May.

Disabled Blogger Tag

This Q&A tag is a wonderful creation by Elin at My Blurred World who recognised that, in amongst all of the many blogger tags out there, disabled bloggers didn’t have a tag for themselves. I’m one of the people she nominated to do it, and I’ve also been nominated by The Invisible Vision Project, Amanda Gene and Life Of A Blind Girl, so thank you to all of you! 🙂

So here are my answers, as a post and a video. I hope you enjoy it and find it interesting!

My First Aniridia Network Conference

One of the first people I met after moving to London last year was James, a trustee at the Aniridia Network. He got in touch after he saw me writing about aniridia on my blog, and noticed that we had other things in common too. So we met up and became friends, which was a great welcome to London in my early days here.

Over the months since then, I’ve became a voluntary communications officer for the charity, which involves helping out with blog posts, social media content and email newsletters, as and when time permits. One of the first things we did together was to edit the promo video for the first Aniridia Day last year, which was very successful.

And now the latest project has been recording and publishing material relating to the Aniridia Network Conference, which took place on 14 April. It’s their flagship annual event, bringing together people with aniridia, parents of children with the condition, medical professionals, researchers, etc, for a day of presentations, activities, socialising and information gathering.

And this was my first time at the conference, so I was really looking forward to it. Not only would I be helping out with filming, but I was also asked to give a speech there as well, so it looked set to be a very busy day!

So in this post I want to tell you how it went. And this is just my own personal perspective, this isn’t part of my social media work for the charity. They are of course welcome to quote from this post, but they haven’t asked or sponsored me to write this. You can see their own updates about the event, including photos, videos and feedback, on their website, Facebook, Twitter and Youtube pages, with much more to share over the coming days and weeks. But for now, here’s my own experience of the day.

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