Half the year already gone, and what a year it’s proven to be already. My support worker job is continuing to go well, so I have a nice little update to share on that. Then there’s the usual mixture of theatre, museums, walks, TV, music, etc that I’ve been enjoying, some of which you’ll already be aware of from my posts over the last few weeks. And apart from a press trip, nothing here is gifted or sponsored. So let’s crack on with my latest roundup post and video, and I hope you enjoy it!
Tag: Aniridia Day
Lockdown Favourites – Weeks 13-16
Hello again. Miraculously we’ve made it past the halfway point in the year, although admittedly it feels like a lot more time has passed. Months effectively haven’t existed for a little while now, with all the weeks just blurring into one continuous sequence.
It’s also strange to think that we passed 100 days of lockdown in week 15. That seems to have gone by quicker than I’d expected, although I know for many that time will have dragged terribly, and certainly early on I found it difficult like everyone else. But I’m glad I’ve been able to settle into a new routine and adapt during that time. Connecting with friends, homeworking, blogging, music, TV and film have all got me through it, and are continuing to do so.
So I hope you’re all continuing to keep safe and well. Our lockdown measures here in England have been eased significantly further again, and the government have ended their daily briefings, but as the virus is still in circulation we all have to remain very cautious. There will inevitably be local outbreaks, which may lead to lockdowns of certain towns and cities as and when necessary (as Leicester have already found), but we just have to hope the entire country won’t be shut down again. The most vulnerable people who are still shielding will have to remain indoors until early August, when they can finally go out again if they feel ready to do so.
Regular readers will know that my mother and I have been voluntarily shielding, even though we’re not explicitly required to do so, for my mother’s safety in particular. In recent weeks I have been getting out a little bit more though, and Mum’s been out once, as I explain during this post. It’s just around the local area though – I still don’t intend to use public transport for the time being, even though there are safety measures in place for train travel, as the risks still feel too great and there isn’t anywhere that I need to go.
So here’s my latest update on the things I’ve been doing and enjoying over the last few weeks, with accompanying videos for weeks 13-14 & 15-16. None of it is sponsored to appear here, but I was paid to attend the CXcon event as you’ll see. I hope you enjoy looking through it all!
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Lockdown Favourites – Weeks 9-12
Hello again, I hope you’re continuing to keep safe and well. It’s been a strange few weeks for me. It started with the loss of my uncle over the Bank Holiday weekend, although fortunately he didn’t have the virus, and my mother and I are hoping to go to the funeral to support my aunt if the rules allow. And then of course we’ve had the Dominic Cummings scandal, which I’m not going to rant about, suffice to say there’s been a major misjudgement of the public mood by him and the government, they’ve lost a lot of trust and goodwill.
On the plus side, however, our lockdown has been eased in various ways, including the re-opening of non-essential shops, the compulsory use of face coverings on public transport, and the partial re-opening of schools. But many scientists feel too much is being done too soon – and if the experts are wary then so am I, because I trust their judgement the most. So I’m happy to continue staying locked down, because I have no compelling reason to go out anyway, and my priority is still protecting Mum by not bringing the virus home.
Best wishes to my friends and followers in the USA as well, all our thoughts are with you right now. Black Lives Matter, and those taking advantage of peaceful protests to cause destruction and misery have no respect for peace and equality. I sincerely hope that stability and civility is restored very soon. We should all be pulling together at all times, but it’s more important than ever during this pandemic.
Anyway, apart from all that, I’m doing fine and have been quite productive, and I’ve continued to find lots of pleasant distractions. So let’s get into my latest post about what I’ve been enjoying, and there are accompanying videos for week 9, week 10 and weeks 11-12. Apart from the Def Leppard box set noted in the music section, nothing else is sponsored or gifted here, and all opinions are my own. So I hope you find it interesting!
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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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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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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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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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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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June 2017 Favourites
Hi there, welcome back to the next instalment of my monthly updates. It’s hard to believe that it was the 6-month anniversary of my move to London in June, that’s certainly flown by!
Of course, I appreciate that this month is one that some people would rather forget, given the despicable attack on London Bridge and the devastating Grenfell Tower fire, and my thoughts go out to everyone affected by those terrible events.
But for me, I’ve happily continued with my explorations of London, taking advantage of the glorious weather to walk around a lot of different places, capturing lots of photos and videos along the way, as well as celebrating Aniridia Day, seeing TV shows being recorded and socialising with friends! Hence this is a very busy post, and I hope you enjoy it all!
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