The Reality of Aniridia & Nystagmus – Guest Post by Glen

I’m delighted to be featured in Ami’s Undercover Superhero blog, as part of her excellent series raising awareness of different disabilities! Check out my guest post about how I live with aniridia & nystagmus, and have a look through the other posts in the series too. Thank you for featuring me Ami! 🙂

Undercover Superhero

Glen’s guest post is the 47th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Glen!

Hi! My name is Glen, I’m 36 years old, and I’ve been living in London for the past 3 years since relocating from Devon. I’ve continued to provide IT support for my Devon employer as a homeworker, while in my spare time I enjoy musicals, comedies, museums, eating out, walking, travelling, socialising and blogging.

Glen has his side to the camera, he is wearing dark sunglasses and has a pair of white earphones in his ears. A large church/cathedral is in the background. People who are walking past are very blurred.

My Story

I was born with the genetic condition, Aniridia, which means I don’t have irises (the coloured circles) in my eyes. In my case it’s congenital, because it was inherited from my mother. But for some the condition can be sporadic, meaning the particular gene (PAX6) gets corrupted purely by chance. It affects…

View original post 1,419 more words

2019 Review

2019 was a bit of a rollercoaster year for me, but it worked out well overall. I was very busy and active for the first half, then there was a dip during the summer with various things that came up all at once, before the final few months that gave me a chance to recharge and get back to normal, while also throwing in one or two surprises.

So as is traditional, I thought I’d quickly go back over the year, to recap on the many things that happened. Click on the headings for each month to see the Favourites post in each case, while there are links to more detailed review posts throughout the text as well. I hope you enjoy looking back at it all with me.

Continue reading “2019 Review”

Disability & Sunshine Blogger Awards

Rather than finish the year with a dull post about a scam email, I actually wanted to do a quick post to tie up a couple of loose ends, before I get on to doing my Christmas Favourites and a general look back at the year gone by to kickstart 2020.

As many of you know, people in the blogging community often nominate each other for “awards”, which is an opportunity to promote other bloggers that you like and ask them questions. And I was very kindly nominated for two of these awards back in October, but didn’t get around to responding at the time. So I wanted to acknowledge them and answer the questions that were put to me.

If you want to answer these questions yourself, then please feel free to do so. I always nominate everyone on my lists of sight loss bloggers and disability bloggers by default, as I always find it difficult to narrow it down to a select few!

Continue reading “Disability & Sunshine Blogger Awards”

September 2019 Favourites

Those of you who have been following along recently will know that I had some issues in August that stopped me going out much. I was still able to do a July & August Favourites post, but the August part of that wasn’t very substantial.

September has continued to be rather mixed, as I’m still having an issue with my feet, so I didn’t get out too often. I think it might be hives of some sort, but the antihistamines are keeping them right down, so they’re not getting worse and are tolerable. It means I’m able to get around more easily, and also go out and about if I don’t overdo it. I’ve got a dermatologist appointment on 2nd November (which was thankfully moved forward from the original date of the 30th), so hopefully we can start sorting it out then.

And for those wondering about my Personal Independence Payments claim, no decision has come through yet. But I had 3 text messages to say they had the report from my face-to-face assessment, and then 2 letters in the post to say they have all the information they need to make a decision. So I just have to wait and see now.

Despite all of that, however, I’ve still ended up with a fair number of things to write about for September. I did manage to go out over the course of a weekend, when my foot was behaving, plus I’ve got some exciting videos and articles to share that I’ve been involved with, and there are some TV shows and music releases I want to mention. And as usual, no products in this post are gifted or sponsored, and all opinions are my own. So I apologise that there won’t be much in the way of London-specific stuff this month, but I still hope you enjoy this post and video as always.

Continue reading “September 2019 Favourites”

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?

Continue reading “What Is Normal? (Documentary)”

Disabled Access Day 2019

Happy Disabled Access Day! 🙂

Disabled Access Day aims to promote the accessible experiences that are available for disabled people, and this year’s event is encouraging people to “try something new and send a review”. I myself am going to an event today and will post my thoughts on it in due course, along with other accessible events that I’m attending this month.

Today is important because it helps to raise awareness of the importance of accessibility for all. It is a basic human right for everyone to have equal access to products, services, experiences, etc, including disabled people, because we need, desire and enjoy the same things as everyone else. We’re all human at the end of the day. Yet there are still many barriers to access and things that need to be improved, which is one reason why there are so many visually impaired bloggers and disabled bloggers who discuss their accessibility issues on a regular basis

However, it’s just as important to celebrate the positives as well. There are already lots of accessible experiences out there, and Disabled Access Day is a great opportunity to promote them. Because it’s not always obvious what’s available. Even now I’m still discovering things in London despite living here for 2 years! So to have a day full of organised events to choose from is a great initiative, which will hopefully inspire disabled people to discover and do more, and inspire other individuals and organisations to take notice and work to improve access for all.

So with that in mind, I’m very proud to have been asked to write 2 guest posts for today, highlighting the accessible experiences that I’ve been enjoying in London. So please do check them out, and I hope you enjoy them:

You can also check out reviews of my cultural experiences by following the links on my museum and theatre pages, among my other out and about posts. I also have lots of posts about living with my visual impairment if you want to understand that aspect further.

Disclaimer: The Old Vic kindly gave me tickets to a show in exchange for my post, while I was not gifted for the London Vision post. In both cases, however, all views are my own.

2018 Review

My second year in London has flown by, and what an incredible year it’s been, full of even bigger surprises and adventures than the first. Raising £920 from my charity abseil for nystagmus research and giving a speech to primary school children about growing up with sight loss were 2 of my biggest and most surprising achievements this year without a doubt, but there’s been so much more going on as well.

I really do feel like I’ve settled in properly now. I’ll always want to experiment with new things and meet new people, that’s one of the many great things that living in such a wonderful city enables you to do. But the foundations I laid by doing that in 2017 definitely enabled me to have more confidence in 2018, so I had a much better idea of the things I enjoyed doing most, I was less shy around people, and I made more friends on an individual level beyond just going to social groups.

My blogging has also gone well this year. It’s only ever been a hobby on the side – I’m not after fame or money or PR opportunities or anything like that – so I’ve never been worried about the numbers. But it is nice to check the figures at the end of the year, and I’m delighted that my subscriber counts have gone up so well:

  • Blog = 132 followers (more than doubled from 60 last year).
  • Youtube = 400 subscribers (doubled from 200).
  • Twitter = 570 followers (nearly doubled from 300).
  • Instagram = 300 followers (more than trebled from 90).
  • Facebook = 63 followers (my page was still very new back in 2017, so I didn’t note the figure back then).

They may not be huge numbers compared to some, but they’re great for me, and my efforts have already been far more rewarding than I ever could have anticipated. I’ve continued to get many amazing opportunities and lots of wonderful feedback, been invited to do various guests posts, and have made wonderful friends in person as well as online, all as a direct result of my posts and videos. So I’m getting far more success and satisfaction from this than I’d ever expected or could have hoped for, and if things continue to go so well then I’ll be very happy!

So thank you ever so much to everyone who has followed and supported my adventures, whether you’ve joined over the past year or have been with me since I started this blog nearly 3 years ago. It’s greatly appreciated that you find my posts interesting, entertaining and inspiring, and I hope you’ll continue to follow me in 2019.

But before we get into the new year, here’s a look back at what I’ve been up to in 2018. I’ve published Favourites posts and videos for every month, which you can get to by clicking the monthly headings below. And you can also see more in-depth posts, photos and videos about particular things linked throughout the text in bold (but there will be even more links in the Favourites posts themselves of course).

So I hope you enjoy this recap of the year, and thank you again for being a part of it and sharing it with me. And a very Happy New Year too! I hope that 2019 is a great one for you! 🙂

Continue reading “2018 Review”