Growing Up With Sight Loss

When I started my blog and Youtube channel, I assumed that the only talking I’d be doing for people about my disability was purely from the comfort of my own home, reaching people through their computers and smart devices. But then, last year, I ended up giving my first ever public talk to adults at the Nystagmus Network Open Day, about building my new social network. It was a complete surprise and a completely new experience for me, and one that I assumed was going to be a one-off.

However, earlier this month I had the opportunity to give another talk, this time for a very different audience – primary school children, around 9 to 11 years old.  I won’t name the school or the people involved – they’re awesome and know who they are anyway – but what I want to do here is give you an overview of what I said. I wanted to take the time to write it down for posterity anyway, as I went over it in my head beforehand rather than writing a script.

So I figured you might find it interesting to read as well (or watch my video if you prefer), as it gives another perspective on my journey through life to date.

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Wicked

Just because I said I enjoyed Winter at the Young Vic and looking at the snow recently, it doesn’t mean I want the winter season itself to continue! We’re halfway through March now, so you’d think the spring might make a bit of an effort. But no, we had a bit more snow today, with more due tomorrow! When I’d heard this on the weather during the week, I was worried that it might stop me from going out today. But thankfully it didn’t. What little snow fell in London failed to settle, much to my relief!

So that was great, because today I was able to tick off another big production from my theatre wishlist – Wicked. It’s had loads of awards and gets loads of great reviews, and I already knew a couple of songs from it, so I was really keen to see it. And when the opportunity to book tickets with a touch tour and audio description came up a little while back, I gladly went for it. So I went this afternoon, and in this post I’ll tell you what I thought!

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Rare Disease Day Photo Challenge

Update (March 1st) I won the challenge, much to my surprise! Thank you so much to Rare Disease UK! It was great fun being involved, because I loved the theme of the campaign, and I really enjoyed seeing other people’s photos. So very well done to all involved. We can all be proud of our efforts to raise awareness during the month! 🙂

Happy Rare Disease Day! 🙂

Today is a wonderful international opportunity to raise awareness of rare diseases, conditions, disabilities, etc, to educate people and highlight the need for greater funding and research. Here in the UK, it’s led by Rare Disease UK. But there are events taking place worldwide, so there will be related organisations in many countries.

1 in 17 people have a rare disease, meaning it’s a lot more common than you might think. So even if you don’t have one yourself, chances are you know somebody who does. And if you do have a rare condition, you’re certainly not alone.

There are over 6,000 rare diseases, affecting over 300 million people worldwide (including 30 million in Europe). That’s a huge number! So this is a day for all of us unusual rarities to get together, along with anyone and everyone who supports us and the cause in any way.

This year, the theme is “Show your rare, show you care”, and everyone can get involved, regardless of whether or they you have a rare disease. So that includes patients, families, carers, medical professionals, policy makers and members of the public.

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Winter at the Young Vic

If you live in the UK like me, you’ll be well aware that we’re getting another blast of winter from the weather gods right now, including some snow. Which is lovely to look at if you don’t have to go travelling in it – yay to being a homeworker! – but on the whole I think we’re all looking forward to spring and some warmer weather more than ever.

But as we’re still in the winter season at the moment, it felt like a very appropriate time to go and see a play called Winter by Jon Fosse, which was on at the Young Vic theatre from the 14th-24th February. Granted, it’s got nothing to do with the weather, but the title and timing is appropriate. And it is quite an unusual play compared to the ones I’ve attended so far. So I wanted to tell you a bit about my experience.

Before I do, there are a couple of important points to note for transparency:

  1. I was among a few visually impaired bloggers very kindly offered complimentary tickets by the theatre to see the show, as they were extending their accessibility services for this production and wanted our feedback. However, all ramblings and opinions here are my own, the theatre have had no input into this post.
  2. This is a spoiler-free review. Although the play’s run at the Young Vic has finished, it will appear in other venues, just it has done in the past. So there’s a chance other people interested in the show will find this post, and I don’t want to ruin anything!

Now that’s sorted, let me tell you how things went last Friday. I hope you enjoy reading about it.

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Museum of London

To escape from the freezing weather at the weekend, I spent a couple of afternoons looking around the Museum of London, which I haven’t yet been to since moving here. I think I may have been there once as a kid, but I don’t recall it in any detail. It’s a really interesting place though, covering the entire history of London through a huge variety of exhibits. So I was really looking forward to exploring it, as I’ve always loved the city since I was a child visiting relatives here, and I’m now very happy to be actually living here.

My first visit on Saturday afternoon had a dual purpose, as I was helping a lovely lady called Rafie Cecilia from University College London with her PhD study into assistive technology for visually impaired people at museums. This basically involved me wearing a camera on my chest to record what I was looking at, while Rafie followed me around and took notes on what I was doing, and then she recorded an interview with me afterwards about my experience. She’s very friendly and professional, and it’s wonderful that she’s looking into this kind of thing, so I enjoyed the experience. This is our second of 3 meetings in fact, having first got together at the Victoria & Albert Museum in December, and I’m looking forward to meeting her again at the Wallace Collection soon. And I know she’ll be reading this, so hello! 🙂

I had only intended to visit for one day this weekend, but as I didn’t get to see the entire first floor on Saturday, I decided to go back and finish it off on Sunday. That only took another hour though, which was quicker than I thought it would be. So I ended up going downstairs and looking through all of that floor as well. Sure, I didn’t read or view everything along the way, as I couldn’t see it all clearly enough, for reasons I’ll get to later in this post. But I did get to see a lot of lovely things, and took hundreds of photos along the way, so I got a lot out of it overall.

So in this post I want to tell you about my visit, and show you just a handful of the many photos I took (there are many more on my Instagram and Facebook pages). Hope you enjoy!

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Tate Modern Audio Tours

On Saturday I decided to visit the Tate Modern, as I had stumbled upon the fact that they now have a mobile app giving audio tours around the place, as well as other features that tell you more about the art on display, the activities on offer and where to eat and go shopping.

The last time I visited the Tate Modern was as a kid with my family, which I don’t remember clearly now of course (but I did record a bit of video footage at the time). So it’s been on my list of places to explore since I moved to the city, and this was a good opportunity.

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Science Museum – Information Age

I haven’t just been looking at Harry Potter things this month. I’ve also been to other museums as well. And in this post, I want to talk about the Information Age gallery at the Science Museum. I explored the exhibition over a couple of visits, as there’s so much to see in there. It was all very interesting, and I was also curious to try a special accessibility app that had been developed especially for it. So this post is a little review of my experience.

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