Glen's nystagmus story

We are grateful to Glen who shares with us in this issue his advice on building social networks in a new city when you have a vision impairment. Glen moved to London just under a year ago and had to make new friends, look for accessible things to do, as well as find his way around the city. He has documented lots of his experiences in his blog WellEyeNever. He also brought his own presentation to this year's Open Day in Birmingham. Thank you, Glen

Bullying at school took a while to overcome

This has been a big year for me, having moved to London from the West Country just before Christmas. It’s been an unexpected yet welcome change, but I also wondered how much my visual impairment might limit the things I'm able to do in such a vast and complicated city.

I was born with nystagmus and aniridia, which means I have poor distance vision, am sensitive to glare and sunlight and struggle in the dark. Bullying led to severe confidence issues early in my childhood, which took a while to overcome, but I did it!

I knew I'd have to push myself

I went on to get a solid education, many close friends and a steady career, all of which is another story.

However, I was around people I knew back then. Moving to a big city, where I didn't know people, places or routes, would be a challenge. I knew I would have to harness the confidence I'd developed over the years and push myself to make the most of it, even if it meant going out of my comfort zone a bit.

So, prior to the move, I scoured the internet for websites, social media feeds and email newsletters on all aspects of London - city guides, transport info, attractions, events, social groups, bloggers, etc. It gave me a great sense of what was possible. And I also discovered a huge community of disabled bloggers and support groups from London and all over the world. So I joined them with a blog of my own, too. All of which laid useful foundations, but actually venturing out into the city would still be a big step.

It's not always simple, but I can live with that

Thankfully, navigating London has been relatively easy, thanks to my iPhone and the internet. I can ask Citymapper or Google Maps how to travel to places and practise walking routes in Google Street View before I get there. I can read signs by using my monocular (a mini telescope) or getting close up to them, listen to the audio announcements on trains and buses, ask the friendly staff for help and travel without charge thanks to my Freedom Pass. And when I'm not on public transport, I love having a good long walk to explore different areas of the city.

Sure, it's not always simple. You can’t always hear announcements on loud trains, so I remember to count the stops. I’ve occasionally got on the wrong train and had to turn back at the next station and I have to take my time and be careful when it's really crowded or if there are diversions in place that mess up my intended route. But I'm able to live with those occasional frustrations.

Awareness is growing and effort is being made

Accessibility at many venues is good, too. Many have access pages on their websites and some museums offer large print and audio guides. Thanks to initiatives like VocalEyes, I’m discovering the delights of touch tours and audio description at museums and theatres, which really enhances the experience. So I'm now keen to see lots of shows and exhibitions I might otherwise have avoided.

It's still a developing area, of course. Plenty of attractions and entertainment venues don't have adequate signage, large print guides or audio description and so aren't easy to navigate or experience, sadly. However, many major attractions do seem to be nicely accessible and I've been to a couple of focus groups for those looking to improve their services further. So it's good to see that awareness is growing and effort is being made. Better late than never!

Some things have been easier than others

Socialising was the thing I felt most nervous about and it can be tricky. But so far so good! I was able to join a local group for the visually impaired and they’ve been very friendly and welcoming, with very enjoyable and accessible outings and events. I've been meeting other visually impaired people at the museum tours and focus groups I'm attending. It's easy to fit in with everyone, given that we all have something obvious in common to start with.

I’ve also joined a few non-disabled groups as well, trying activities like quiz and game nights, walking tours, food and drink socials, escape rooms, speed dating and more. Some events have been easier than others from a visual perspective, but they’ve all been fun and worth trying. It's helped me narrow it down to those I most enjoy.

The tricky aspect tends to be small talk. Some people are easier to engage with than others. Events in noisy bars aren't conducive to conversation and I sense a few people have been nervous about talking to a disabled person. But there have been no major issues. Everyone is lovely and very respectful and there are many who greet me as a familiar face now, so I do enjoy the events.

The most important thing was to get out there!

All in all, therefore, I'm very happy. I was apprehensive at first, but the most important thing was to pluck up the courage to get out there and take my first steps in exploring the city. In doing so, I've started to make new friends, figure out the activities and places I most enjoy and feel more confident knowing that my disability isn't a barrier. I don't think I'll ever get bored here.! 
You can read my blog about my experiences, where you’ll also find links to my Youtube, Twitter and Instagram pages. Thanks for reading!

The Nystagmus Network is here to support everyone affected by nystagmus. See our website or get in touch.

If you've been inspired by Glen's story, please consider making a donation to the Nystagmus Network. Thank you.

... and finally, an appeal on behalf of Mr Jay Self, Consultant Ophthalmologist at Southampton General Hospital and Associate Professor at Southampton University.

Do you have albinism? Are you 60+?

You could help Jay Self and Helena Lee at Southampton University answer 2 really important questions: 

1.       Why has Albinism and Age Related Macular Degeneration (AMD) never been seen in the same patient when AMD affects 1/3 of people over 75? Are people with Albinism protected from this condition?

2.       Why does the retina lose function late in older animals with Albinism, but apparently not in humans?

If you, or someone you know, would like to help Jay and Helena find answers to these crucial questions, please complete this form. Thank you.

The Nystagmus Network relies entirely on membership subscriptions, fundraising and donations to continue its important work proving support and information to the nystagmus community, raising awareness and funding research.

Want to share your nystagmus story?

If you would like to share your story with the nystagmus community, please get in touch with us using the contact form.

We hope you have a great day from everyone at the Nystagmus Network!
Who is the Nystagmus Network?
The Nystagmus Network has been providing support and information about nystagmus for over thirty years. The charity supports families affected by the condition and has been at the forefront in funding the research to find effective treatments. 
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