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.

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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?

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June 2019 Favourites

We’ve reached the halfway point in the year, and summer is finally blessing us with decent weather. And I’ve had a very busy month!

Firstly, there have been some disability related developments, most of them positive. In particular, I’ve spoken at a conference, been a guest on a podcast, and I was filmed for another documentary. So my visual impairment led to a few great opportunities in quick succession, I’m happy to say.

On the downside, I’ve finally received the call-up letter to switch from Disability Living Allowance (DLA) to Personal Independence Payments (PIP). This basically means I have to fill out a huge form about how my disability affects me, and then have a face-to-face assessment with a health professional, so the government can decide if I’m entitled to benefit payments. It sounds relatively simple when worded like that, but most disabled people will tell you it’s anything but. So that’s going to be on my mind a lot over the next couple of months at least, and I’m not looking forward to the process. But I’ll let you know how it goes at a later date. I’m not going to bore you with a rant about it in this post!

Thankfully, apart from that, I’ve been able to enjoy the month in many other ways. I went on a lovely weekend break with my girlfriend, I’ve been out in London for more exhibitions and walks, my girlfriend and I enjoyed a new film at the cinema, and I’ve enjoyed new TV shows and music releases at home. So there’s plenty to get through. As always, I’m not sponsored by anyone mentioned here, I’m just sharing these things because I enjoyed them. And I hope you enjoy this month’s post and video!

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May 2019 Favourites

Hello again, and welcome to my latest monthly recap. I’ve been a bit quiet here this past month, and that’s because I had to take a step back while working on a couple of important things – neither of which I can give you a lot of detail about in this post, although I will briefly tease you about them.

A lot of my time was spent preparing for this year’s Aniridia Network Conference. Not only was I going to be capturing photos and video, but I also had to prepare and rehearse a talk of my own, about how I’ve grown in confidence with aniridia. So that was naturally on my mind a lot. The successful event took place on 1 June, and all of the talks were filmed, which I’ll be editing and uploading to the charity’s Youtube channel in the weeks to come. So I’ll share my talk with you at a later date. In the meantime, do also keep an eye out for Aniridia Day on 21 June, which will raise awareness of the condition worldwide, and show your support if you can.

I was also on camera during May itself though, for another exciting reason, because a mini documentary was made about me by a wonderful group of film students. I really enjoyed the experience, and I’m very pleased with how the film’s come out. I’ll tell you all about it in a separate post later, after the video has been published (although there is a sneaky preview in the video relating to this post). It was made for a major disability charity, so I’m waiting to see if they’ll post it first. But I have permission to publish it on my own channel as well, so it’ll end up there in due course. In any case, I’m really looking forward to sharing it with you!

Those events aside, there are still some other bits and pieces I can tell you about in this month’s post and video. As always, I’m not sponsored by anybody mentioned here, nothing has been gifted, and all opinions are my own. So let’s crack on with it, and I hope you enjoy as per usual!

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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 some guest posts 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!

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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!

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August 2018 Favourites

It’s now time to do my August Favourites post and video, to bring myself up to date, before I get into an eventful September. August was again busy on the social media front, and there was important stuff going on at home too. But I also had time to go out and do a nice variety of things as well. So it was another productive and enjoyable month, and I hope you enjoy reading about it.

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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.

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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.

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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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