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!
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.
Continue reading “My First Aniridia Network Conference”Earlier this month I made another visit to the Victoria & Albert Museum. The first time I went there last year was with a lady called Rafie Cecilia, to see how accessible it was as a visually impaired person for her PhD study. And this time I met her at the museum again, but this time it was for a focus group accessibility study organised by some of her colleagues from University College London (UCL), and there were 3 other participants as well as me. The ladies from UCL (Lydia Porter, Jessica Andrich & Nicola Flüchter) were running a few of these sessions over a couple of days, and this one had sounded very intriguing to me. Quite literally ‘sounded’ in fact, given that it involved some clever use of ultrasound!
Continue reading “Something In The Air At The V&A”Well, that’s an early Easter out of the way for this year, and I hope everyone had a great time. We had the typical bank holiday weather here in the UK – i.e. wet – but on the plus side we also had lots of treats to indulge on as well, so it’s been like another Christmas in that sense. Indeed, with the wintery weather still hanging around, you’d be forgiven for not realising it was spring yet. Still, just like February, once again the weather hasn’t stopped me from having another very successful month.
But before I get on to the details, I just want to very quickly mention a free event I’m attending in April that you might also be interested in. I’m not being paid to mention it, but I am one of their voluntary social media ambassadors. And regardless of that, I’m genuinely intrigued by the whole thing anyway, having never heard of it before, so it deserves a mention in any case. And I don’t want to bury it at the bottom of the post where nobody will see it.
So to quote them directly:
Naidex is Europe’s most exciting event dedicated to the disability, independent living and healthcare professional sectors. Taking place at the NEC Birmingham on the 25th and 26th April, this esteemed event provides cutting-edge exhibitors, world-class CPD accredited seminars, live demos, 1-2-1 advice and unparalleled networking opportunities, over two unforgettable days. And it’s absolutely free to attend! Register for your FREE ticket on naidex.co.uk!
There are bold claims there, I know, but in all fairness I’ve looked through the show guide listing the exhibitors, speakers and events, and it really is very exciting. Plus it is their 44th year, so they know what they’re doing. I’ll be there both days and will have no problem filling the time, and I will of course tell you all about it. But I recommend going too if you can – it’s free, so you just have to be able to get to Birmingham on at least one of those days, and you need to register for tickets on their website in advance. If you’re a fellow blogger who’s also going, and you want to say hello there or collaborate in some way in relation to it, you’re welcome to get in touch. And if you know others who might want to go, pass it on!
Ok, that’s all I have to say about it, I just felt it deserved a plug. Now let’s crack on with my latest favourites post and video, so you can see what I’ve been up to. I hope you enjoy it!
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, at St Joseph’s RC Primary School, who were awesome. And 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.
Well, what a way to start a new month, with snow all over the place! Winter has seemed very reluctant to let Spring take over, but hopefully things will warm up in the coming weeks now.
And the cold weather didn’t stopped February from being an eventful month. Following on from my January 2018 Favourites, it’s now time to look through what I’ve been enjoying in February. And even though it’s the shortest month, I seem to have packed quite a bit in! So I hope you enjoy this post and video for February.
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! 🙂
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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.
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. I hope you enjoy!
Continue reading “Museum Of London”After a very eventful and successful 2017, I’ve been looking forward to seeing what 2018 would bring. And for this first month of the year I’ve been mostly doing things indoors, given the cold weather outside.
So I’ve been going out to various museums, and have also been to the theatre, while at home I’ve been watching a couple of the DVD sets I bought last year. I’m also making an effort to start listening to more audiobooks this year, as I only did one in 2017, which was bad of me – although, to be fair, book-reading wasn’t top of my to-do list having just moved to a huge city!
So I’ve been keeping myself entertained in various ways, and I hope you enjoy this recap, for which I’ve also produced a video as well.
Happy New Year everybody! I hope you all had a lovely Christmas, and that 2018 is a joyful and prosperous year for you. 🙂
This Christmas marked my first anniversary of moving to London. It’s hard to believe it’s been that long already. And 2017 has been an amazing year! Although I was already used to getting around the city from my previous visits, it was still a leap into the unknown in many respects to actually live here. I had no idea how well it would work out, how safe or comfortable I would feel, how accessible events and attractions would be, and how easy it would be to make friends.
But it’s been more than worth the effort, and I’m extremely happy with how well it’s gone, given all the friends I’ve made, places I’ve explored, new things I’ve tried, and the opportunities I’ve taken up. A year ago I never imagined that I would be doing many of the things that have transpired in the months since.
I’m also pleased that my blog, Youtube, Instagram, Facebook and Twitter pages have had a steady increase in followers over the year. Sure, I don’t have big numbers compared to the bigger bloggers out there, but relative to where I was a year ago it’s been a substantial leap. And my goals for this haven’t been about the numbers anyway. Making connections, sharing my experiences and spreading a bit of awareness was always my aim, and I’ve been achieving that. It’s resulted in numerous opportunities and new experiences, including guest posts, a public speech (with another planned for next year), participating in a research study (which is continuing next year), being interviewed by a journalist, and more. My efforts have been paying off more than I could ever have imagined, and I’m loving it.
But above all, thank you so much to everyone I’ve met and interacted with during the year, whether it be in person or online. By reading, liking and sharing my content, leaving comments, asking questions, sending me private messages and emails, giving me opportunities for guest posts and public talks, and even meeting up in person, you’ve helped to make this year a very special one for me. Especially Aniridia Network UK, Nystagmus Network, London Vision, Thinking Bob, VocalEyes, RNIB, Scope, Fashioneyesta, Life Of A Blind Girl, My Blurred World, Luke Sam Sowden & All The Stations, but also everyone else that I’ve had any kind of contact with during the year.
Everyone has been very positive and supportive, and your involvement has enabled me to start this new chapter in my life with confidence and comfort, and fun and friendship. And for that I’ll always be very grateful. 2017 will forever be one of the most significant and happy of my life, nothing will take that away.
And I’ve had a lovely Christmas to finish it off in style, so I wanted to bring you up to date with how it went and the various things I enjoyed. This is quite an epic post as a result, and I’ve also filmed a video that mentions some of the stuff here along with my general reflections on 2017 as a whole. So I hope you enjoy!
Well Eye Never 
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