Service User Daniel Develops His Confidence Attending East London Vision Events

My name is Daniel and I’m 36 years old. In my blog article I will be speaking about my memorable moments attending East London Vision events this year.

I attend the Beyond Sight Loss Group in Tower Hamlets. I have been diagnosed with retinitis pigmentosa, night blindness and tunnel vision. My eye conditions affect me mostly during the evening so that’s when I need my white cane the most!

Coming along to ELVis events enables me to socialise and make new friends. The activities I’ve been along to include a visit to Clacton-on-Sea, a boat trip to Richmond Park and a quiz night in Newham. I enjoyed all the events, although I especially liked the quiz night because it was diverse. There was lots of delicious food to eat, games to play, karaoke and a raffle- which I won a prize from!

All the events I’ve attended with ELVis were accessible. I travelled by minibus to Clacton-on-Sea with the Beyond Sight Loss Group. And there were many volunteers assisting us on the day which was great! They demonstrated a lot of care and understanding towards all the clients. They even joined us on the rides.

I had a nice time getting to know Sandy and her husband, who are both ELVis volunteers. They’re both personable and have a great sense of humour. I enjoyed our conversations. Moreover, Bhavini Makwana who organised the trip came along. Her friendly personality made me feel very welcome, and I felt very glad I attended the trip.

It is very rewarding to come along to ELVis events. Not all places are accessible, and going out with ELVis challenges these barriers. I can now clearly see that my disability shouldn’t stop me from having a good time.

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Daniel (middle) with other ELVis members posing for a group photo during a trip to Clacton-On-Sea.

If you would like to know more about East London Vision, and for regular updates on events and activities for vision impaired people living in East London, please visit www.eastlondonvision.org.uk.

Alternatively, you can contact Nicola on 07914770909 or email Nicola@eastlondonvision.org.uk for more details.

I hope you’ve enjoyed reading my article. Thank you!

Written by Daniel Worrington

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Katherine’s Kayaking and White Water Rafting Experience

ELVis member Katharine Way, 54, from Waltham Forest talks about her experience participating in white water rafting in Lee Valley, and undertaking a four-week kayaking course with the Docklands Sailing and Watersports Centre.

“I have retinitis pigmentosa. My father and grandmother had it, and it’s been in my family for generations. I’m partially sighted and I still have a reasonable amount of sight. But there are plenty of things that I can’t do, like driving.

I grew up around water in Swansea, South Wales. As a kid I enjoyed many summers by the beach and swimming in the sea near the Gower Peninsula. I occasionally go back to visit, and when I’m feeling brave enough I take a quick dip in the water. My parents also owned a kayak. My father was blind so my mother would navigate. As a family we’d go paddling in the Brecon Canals and Llangorse Lake, which I always loved doing. What can I say? I love water! Growing up by the sea you do, and I always try to find water again.

When I saw the opportunity to participate in water-based activities with ELVis I couldn’t say no. I went white water rafting at Lee Valley in May. That was a real revelation because I was so nervous I nearly wimped out on the day. But then I thought, when else would I get the chance to do this and have all the help I need. So I talked myself back in to it, and I’m very glad I did because it was a really fun experience. The only thing I found completely nerve-racking was the swim test because I had to jump in to the rapids and stay afloat. I managed it, and after that everything else was a breeze.

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Photo of Katharine under taking the swim challenge during white water rafting.

On the other hand, kayaking is definitely splashier than white water rafting. My favourite part was getting to explore the waters surrounding Canary Wharf. During the first week of the course I found it tricky to paddle, but now I’ve gotten the hang of it and I feel more confident moving around on the water. I’ve even learnt it’s important to keep in rhythm with the other person who is paddling. Also, the kayaking instructors were great because they’re really patient and they explain everything clearly. If they need to do what they normally do in a different way they do it, which was great.

Taking part in both activities made me rethink the whole way I deal with my disability. I thought there were a lot of things I couldn’t do anymore because of my sight, like rowing a boat. So accomplishing something like kayaking you start to think that you shouldn’t assume that there are all these things you can’t do, but instead find a way of doing them safely. So it’s been quite a big thing for me to take part in, and it’s built my confidence. Plus, it’s been liberating and fun. Don’t forget that!

The skies the limits now as there are so many activities I’d like to do. Thank you East London Vision for organising and subsidising these activities for vision impaired people. It’s absolutely heartening.”

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Photo of Katharine (left) in a double kayak.

East London Vision would like to thank the Primary Club for funding, which has made it possible to run the kayaking sessions for our members.

Written by Katharine Way and Ray Calamaan

Living with Aniridia

What colour are your eyes? Are they blue, green, or brown? It’s something most of us take for granted. But for me it’s not that simple.

My name is Glen, I’m 33, and I have a rare condition called Aniridia. This means I was born without irises, so I don’t technically have an eye colour. Aniridia affects just 1 in 47,000 people, and to mark the first ever Aniridia Day on 21st June 2017, I’d like to tell you a bit about how it affects me.

The iris has an important job. It adjusts the size of the pupil to control how much light enters your eye; they will shrink in bright light to allow less light, and expand in the dark to allow in more light and help you see better.

Without an iris, my eyes are very sensitive to glare and brightness.  On cloudy days I wear sunglasses because there can be glare coming off from things like clouds, walls, and windows. And it gets worse if the sun reflects of rainwater or if I’m feeling tired or unwell.

Similarly, computer programs often have white backgrounds, which also cause glare. So I invert the colours to give me white text on a black background, which I find a lot more comfortable. I then flip it back to normal when looking at photos or videos, or else they look weird!

Additionally, I also have to be careful when I’m going into a dark room. I may have to hold on to another person or wait a few minutes until my eyes adjust to the level of light available in the room.

Living with aniridia hasn’t stopped me from living my life though. I’ve graduated from university and I’ve been working in my job for over 12 years. I also love travelling and socialising. Furthermore, since I moved to London last Christmas, I’m having a great time exploring the city and making new friends – including the very welcoming members of East London Vision, and I’m involved with Aniridia Network UK as well. So I’m happy and comfortable, and the future looks bright as long as I wear my shades!

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Photo of Glen and a tour guide at the Natural History Museum holding a piece of zebra fur, during a trip to the museum in April 2017.

You can find lots more about my visual impairment and the things I enjoy at the following links:

Blog – www.welleyenever.com

YouTube – https://www.youtube.com/channel/UCv7AcWqn3r_HxQRAtxVe5Fg

Twitter – https://twitter.com/well_eye_never

Instagram – https://www.instagram.com/welleyenever/

Thanks for reading!

Written by Glen Turner