Just wanted to say what a great time I had when I was guiding a member of the Beyond Sight Loss social group to the theatre.
The group went to see a rock musical called ‘The Who’s Tommy’ at the Theatre Royal in Stratford, east London.
Before the show began the group were given a touch tour where they met some of the performers, feel the props and see the stage up close. A lot of the members said having the touch tour was a fantastic idea and helped them visualise the story better when listening to the audio description of the show.
When the show started the fun began. I saw some of the people in the audience get up from their seats to dance, and others began singing along with the songs. Some of The Who songs featured in the show included ‘Tommy Can You Hear Me’, ‘I’m Free’, ‘See Me’, ‘Feel Me’, and ‘Pinball Wizard’ – all of which were my favourite songs to listen to when I was growing up.
Overall, the show was a memorable experience for all the members of Beyond Sight Loss. Everyone mentioned how energetic the ‘Tommy’ cast were, and that they would be recommending the show to family and friends. I must say that if you’re a fan of the music by The Who this musical is worth watching!
Finally, I would like to thank Ashrafia Choudhury, Chair of Beyond Sight Loss, for making this trip happen and for all the support and guidance that she does for the group.
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!
You can find lots more about my visual impairment and the things I enjoy at the following links:
For those who haven’t met me yet, my name is Ray and I’m the new Social Media Intern at East London Vision.
I joined the ELVis team in April, and what can I say I’ve been enjoying every aspect of my role so far. I especially love getting the opportunity to go on exciting outings like to the Natural History Museum and taking part in white water rafting at the Lee Valley White Water Centre. However, my role is more than just attending events but promoting them through social media platforms like Facebook and Twitter to encourage service users to participate. I also collaborate with them to promote stories online which other ELVis members would like to hear about.
What initially interested me to join the ELVis team was my experience of training alongside visually impaired people. I’m partially sighted since the age of 22, and I attended the Royal Society for Blind Children (RSBC) for three years as a client where I met other young people with different eye conditions. It was at the RSBC where I was able to learn about the individual challenges my peers faced which helped me develop a good understanding of how to support people living with sight loss.
I also have an interest in blogging and use social media on a daily basis. I write about my experiences taking part in free activities across London on my personal blog which you can visit by clicking here.
Being part of the ELVis team has been a very positive experience so far. ELVis Development and Service Manager, Nicola Stokes has supported me settle into my role, and I can’t think of a better person to do the job. I’ve even had the opportunity to attend the staff conference at the Thomas Pocklington Trust where I met staff from across the country, and enjoyed the perks of eating at a delicious buffet in a very classy hotel close to Euston in Central London.
Overall, I’ve had a very interesting couple of weeks at ELVis and I look forward to the upcoming months I have left as an intern. You never know I might even become a full-time member of staff at the end of it, which I would love to happen!
Also, a fun fact about me is I love cooking and dancing, so expect to see me at those activities in the near future 😉
A photo of Ray and Nicola both smiling at the Thomas Pocklington Trust staff conference in April 2017.
Every now and again, smart devices are introduced without needing modification for vision impaired people to use because they function by using other senses. An example of this is the smart speaker/voice assistant. Smart speakers are screenless and can only be activated by voice.
A smart speaker which I highly recommend using is the Amazon Echo Dot, which is a speaker with a microphone that connects to the Internet. You use your voice to speak to the device and Alexa, the voice assistant, will talk back to you.
The range of skills Alexa has includes:
Finding out the current time
Setting timers and alarms
Playing radio stations
Getting a local weather forecast
Controlling lights, mains plugs with timers and other smart home devices
Planning journeys on public transport
Creating to do lists and calendars
And much more!
Before you can use the Echo Dot it requires setting up, which you will only ever need to do once. You will need a smartphone, tablet or computer connected to the internet in order to link the Echo Dot to your Amazon account. If you don’t have an Amazon account you will need to sign up on the Amazon website prior to setting up. After you’ve completed the setup process you’re ready to use the Echo Dot.
As a blind person the Echo Dot has been extremely useful in assisting me with my daily routine. I’m surprised at how much I use the device to perform the aforementioned skills, as it is a lot quicker to use voice commands than using my computer, even though I am a competent computer user.
The Echo Dot costs £50 on the Amazon UK website, although Amazon has regular sales so you can probably buy it for less. It is also available as the Amazon Echo with a bigger speaker which costs £150. Moreover, Google has recently launched its own smart speaker called Google Home with voice control. Both products can be purchased online but are also available at retailers like PC World and John Lewis.
In conclusion, smart speakers are beneficial for vision impaired people, however I recommend that you research thoroughly which product is able to meet your needs before buying one.
Here is a YouTube video demonstrating the Amazon Echo which is definitely worth watching!
On Saturday 20th May, a group of brave ELVis members set out to Lee Valley White Water Centre, ready to spend their afternoon having a go at white water rafting. This was organised with Metro Blind Sport thanks to a grant we received from the Primary Club.
For most participants it was their first time white water rafting, and people were understandably nervous. Once we’d arrived at the centre, everybody changed into their wetsuits (never an enjoyable task!), and then received a briefing from our raft guide, Tom. Tom was very friendly and helpful, explaining everything thoroughly and letting people get a feel of the raft and paddles on dry land, before getting into the water and practising their skills on the flat, calm surface of the lake.
Once everybody was confident manoeuvring the raft, it was time for the swim test, where they had to jump or slide into fast-moving water and then grab a rope that was thrown out to them. This really did test people’s courage, and it is to everybody’s credit that they all had a go and completed it successfully.
Ian Francis, Sports Development Officer at Metro Blind Sports said, “Jumping into fast moving and noisy white water, with sight loss, takes courage and conviction! Well done to all who took part and overcame their fear.”
The group paddled the raft through the Legacy Course several times, and it appeared that all were enjoying themselves. Each participant had the opportunity to swap seating positions, as well as sit at the front of the raft and experience the thrashing of the water. Lily, an ELVis service user and participant, described it as a “scary but memorable experience”. In addition, there was a moment when it looked like the raft was going to capsize, however thanks to Tom’s speedy reaction he was able to instruct the group to prevent this from happening.
Eventually, feeling exhausted but very pleased with themselves, everybody left the water to get dry and buy themselves a well-deserved hot drink before we headed home. Nicola Stokes from ELVis said, “It’s been fantastic to see how everybody today has worked together as a team, and to hear everyone laughing so much!”
The RP Fighting Blindness Charity held its first Families Conference earlier this month which saw around 30 families come together to meet others who have similar Retinal Dystrophies all going through the same situations.
Guest speakers shared their knowledge on the latest research, genetic counselling, support services available to both adults and children affected, as well as inspirational stories from those living with RP but have gone on to achieve their ambitions and not let their vision impairment hold them back. The members who attended were able to spend time with each other during the weekend and so did the children over activities that were planned for them. The workshops on offer for all to participate in provided additional sources of support and information.
As an ambassador for RP Fighting Blindness, I was invited to speak about my experience of living with Retinitis Pigmentosa. From a shocking diagnosis, moving to London, bringing up children, and then finally getting the support I desperately needed, I finally accepted and came to terms with my sight loss. I found ways I could relive my life; from volunteering, setting up a social group, organising charity fundraisers and now working for East London Vision.
“Was I nervous presenting at my first public speaking event? –most definitely. Would I do it again? – yes indeed.” I had learned that the biggest help and support I received was from another vision impaired professional who knew exactly what I was going through and how I felt. In fact, this is exactly what people said to me about my talk and how they could all relate.
Attending as a delegate was very useful, not only for me but for my family as well. My daughters met other children with vision impaired parents and children who were affected with sight loss too. It was a great opportunity for them to share their feelings over fun activity sessions and during times of socialising. Equally, my husband met other partners in the same situation and it was certainly a great bonding time for them. Moreover, I felt that my parents, who attended their first RP information day ever, found it extremely useful and engaging by talking to other parents and seeing how other people with RP cope and manage in different ways.
Overall, it was a fantastically organised weekend and very much-needed. It was a privilege to have been asked to speak at the event but at the same time thrilled to have been part of it; gaining and sharing lots of information, and connecting with others.
One aspect which I can take away from the weekend, and would love to share with others is – please talk about your emotional journey, whether it be to a family, friend or professional, as there is always someone who can help and you do not have to go through it alone.
If would like to listen to my talk at the RP conference please click on the YouTube video directly below.
I signed myself up to the 2017 Ridderrennet week in November 2016, not knowing what I’d really gotten myself into having never cross-country skied before.
Ridderrennet is an annual international disabled cross-country ski competition held in Beitostølen supported by student volunteers from Sports Science degree courses and the King’s guards from the army. With cross-country skiing there are two tracks in the snow that skis fit into, which aid vision impaired people to follow the tracks whilst skiing.
After having a rocky start with Ryanair on Sunday 26 March and their limited desire of wanting to accommodate 8 blind and partially sighted passengers we safely landed in sunny Oslo. On Monday morning I was paired up with my guide for the week. We ventured out and hit the snow, or what may be better referred to as slush and rather difficult cross-country skiing conditions.
By the end of day 2 I wasn’t sure whether skiing was for me, but when old hands like Mike Brace say “I’ve never known snow conditions to be this bad in all my years of coming and for beginners it isn’t the best conditions to be learning to cross-country ski”, I stopped giving myself a hard time for not grasping it as well as I’d have liked. As the week progressed so did my skiing abilities and the slight onset of sore muscles informed me that I was working hard!
Thursday arrived with snow falling and the challenge of tackling the hills as part of my first race. Not sure who at this stage was more nervous me or my guide! I was counted down at the start line and before I knew it we were off and tackling our first downhill of the 4K race. I made it to the finish line with some rather splendid uphill and downhill falls along the way, but in 54 minutes and one exhausted piece! The rest of that day entailed rest and sleep!!
Saturday morning the atmosphere was buzzing over breakfast with everyone excited about the race, with plenty of discussions about start times and competing to beat each other, as well as own personal race times. Whilst the skiers and guides readied themselves for the race at the World Cup Arena the military band came out and played. My personal goal was to try to beat my time from Thursday, although not knowing what the tracks would be like it was virtually impossible to say how it would plan out.
For the second time that week I queued and edged my way to the start line and waited to be counted down with my guide beside me who was telling me I had to give it my all as it was the last day of skiing and I could rest tomorrow. I encountered just as many interesting falls as the previous race, but with more confidence and the focus of beating my time in the forefront of my mind I got up and kept going. I crossed the finish line with a few marvellous falls with my legs having turned to jelly and given way from exhaustion of smashing my previous time and coming in at 35 minutes!
Despite the lack of snow and awful conditions as a newcomer it was a great week, I got to meet some awesome people, push myself physically and try something new and challenging at the same time, as well as discover muscles I didn’t know existed, or had forgotten they did. To say I was sore by the end of the week was an understatement! As one of a few newbies on the trip we didn’t have the same expectations as previous attendees, so did the best we could, but equally giving us something better to look forward to hopefully next time.
The whole week was extremely well organized from transport to guides, to volunteer support at breakfast, lunch and dinner. If you were unfortunate enough to be lost, or misguided by another vision impaired person (a frequent occurrence!) a helping hand was never too far away to offer a guiding arm.
If you have never cross-country skied and are looking for something challenging to do as well as socialise then I’d say to keep an eye out for next year’s Ridderrennet week and start working on the leg and arm muscles.