Author: Glen

Love London, love a laugh, love life. Visually impaired blogger, culture vulture & accessibility advocate, with aniridia & nystagmus, posting about my experiences & adventures.

Libby’s Eyes

For the visually impaired and other disabled people, the processes involved in claiming and retaining benefits and support can cause a lot of stress. Some are left feeling that their conditions and needs are not understood by those making the decisions. and by wider society in general for that matter. And there is some truth in that unfortunately. Although awareness is improving, there is still a lot of work to be done.

A new play called Libby’s Eyes is hoping to increase that awareness. It’s written by visually impaired playwright Amy Bethan Evans, and stars visually impaired actress Georgie Morrell as Libby. It’s not often at all that you see a disabled character played by a person with that disability, so that delighted and intrigued me when I heard about the production, as well as the overview of the story itself. So I went to see it on Thursday night with my friend Claire, and I wanted to give you my thoughts on it.

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Aniridia Day – My Aniridia Sight

Happy Aniridia Day! Following the shining success of last year’s launch event, this year it’s back and there’s loads going on today.

For starters, there are hours of live webinars taking place all day, with talks and Q&A sessions by patients, parents, doctors and researchers from all over the world. And I’m involved in one of them, because myself and James Buller will be discussing living with aniridia. So do join us if you can!

But the other major part of the day is the Aniridia Sight campaign, where people post a photo of a scene, and then describe how they see the same scene from the same position – i.e. when they take the place of the camera, what can they see with their own eyes?

So in this post, I’m going to share my contribution to the Aniridia Sight campaign. And you can do the same, by sharing your Aniridia Sight photos and descriptions to the Aniridia Day Facebook group, or posting on social media with hashtag #AniridiaSight and tagging @AniridiaDay. I hope you all have a great day, and you find the following description about my sight interesting.

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Whose Liner Is It Anyway?

I’d love to go on a cruise one day, it’s one of those bucket list items for me. I know a few friends who have done it and enjoyed it, and I love the idea of relaxing in a massive floating hotel… well, they can be entire floating cities in effect… with all the entertainment on board, and visiting a variety of interesting places. One day it’ll happen I’m sure. 

But I got a nice taste for it on Saturday, and in particular learned about a lot of the history of it, with the Victoria & Albert Museum’s exhibition Ocean Liners – Speed & Style. This was the last weekend of the exhibition, so I just got around to seeing it before it closed. And I made a new friend in the process. So it was a lovely day, and I thought I’d tell you a bit about it.

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Peter Pan

This weekend I took my mother to see another theatre show – Peter Pan at the Regent’s Park Open Air Theatre. It’s another venue we’d never been to before, and we loved the idea of watching a show in the outdoors. And, as usual, we had chosen an accessible performance that included a touch tour and audio description from the wonderful folks at VocalEyes. I’m pleased to say we had a lovely time, and the weather also behaved itself, so I thought I’d tell you about it.

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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 20th 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 21st 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.

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April 2018 Favourites

Time for another monthly favourites post, and April was very busy for me. There were a couple of big important events, a couple of interesting museum visits, vanother theatre trip, and a few nice walks now that the weather’s improving. So I hope you enjoy this little post and video recap of what I got up to.

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Naidex 2018

On the 25th and 26th of April I went to the Naidex show for the first time, which was held in the Birmingham NEC. It’s Europe’s biggest event dedicated to disability and independent living, and is full of companies showcasing the latest technology, products and services they have to offer, along with seminars and panel discussions, a mobility test track, a sporting arena for people to try out different activities, a moving and handling lab offering training for healthcare professionals, and more. And it’s completely free to attend, which makes it very worthwhile going to check it all out.

I’d never heard of the event before, so I was very intrigued to see what it was all about. I became aware of it because I was one of various bloggers contacted by Cláudia from the Prysm Group marketing team. As well as telling me about the event, she asked if I wanted to be an ambassador for it – which basically involved me giving them a plug on my social media channels, and they would promote my blog in return. I was happy to do that, given my interest in the event, so that’s what we did. Hence you will have seen me mentioning them every so often over the past month, and they did indeed share the link to my blog on Facebook and Twitter a couple of times as well. I didn’t receive any payments or gifts for it, we were literally just exchanging posts to promote each other.

And the event itself was great, I really enjoyed exploring it over both days. So I want to give you a comprehensive review of the event, and tell you about the various companies, products and services that I became aware of. As a result, this is quite a long post, but it is divided into headings with a contents list if it’s helpful. So I hope you enjoy reading about it!

Note: Footage from the event can be seen in my April Favourites video. I also discussed my Naidex visit with Fern Lulham on AMI Audio‘s Kelly & Company show on 24 May 2018.

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The Wallace Collection

Last weekend I took my first ever visit to The Wallace Collection, which is a museum full of paintings, sculptures and furniture collected by multiple generations of the same family. When I was younger I had no idea this was just behind Oxford Street, and a lot of shoppers in that area have probably been blissfully unaware of its existence. Of course, even if I had known back then, I wouldn’t have been interested, as I was never into art as a child, and didn’t pay it much attention for a while as I got older.

However, since moving to London, I’ve been able to start exploring and developing an appreciation for artworks and visiting galleries, particularly thanks to guided tours and other interactive and accessible methods of exploring such spaces. As very much an art novice, I am enjoying learning about it and seeing some of the delights on offer. It’s like a fascinating new world, more so than I’d initially expected perhaps. So that was one reason I was looking forward to this visit.

This was also the third and final outing I was doing as part of a PhD study into museum accessibility for the visually impaired, being worked on by Rafie Cecilia. Our previous visits were at the Victoria & Albert Museum last year, and the Museum of London in February. I also met her again during the ultrahaptics testing at the V&A earlier this month, but that was for a different study. It’s always a pleasure meeting her, and it’s wonderful that she’s putting so much time and effort into this work, to support people like myself who find it harder to explore museums compared to normally sighted people. And now she and her colleague Maryam Bandukda have set up the Disability Innovation Research Society, bringing together researchers to discuss disability innovation and accessible technology, which is great. So I was glad to be meeting Rafie again.

And talking of accessibility, that sounded really good in this museum as well, with the website stating that they had an audio guide for the visually impaired, plus Rafie had recommended a special app I could use to find out more about the artworks. So that was another big reason for me to go. I’d heard very good things about the Wallace Collection, and getting information about the various exhibits sounded like it would be pretty easy. So now I want to tell you how it all went.

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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!

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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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