Why Social Groups are Important for Vision Impaired People

Let me tell you how I’ve become involved with East London Vision.  I became a member of the Hackney Vision Impaired group at the beginning of 2018.  I found out about the group through a Hackney-based organisation called Outward, and they referred me to the Low Vision Impairment Forum at Thomas Pocklington Trust, who then referred me on to ELVis.

Before joining ELVis, I felt completely isolated.  After graduating from university, a year ago, I couldn’t find work, so that led me to feel like I wasn’t doing very much and spending most of my time on my own.  It was a really depressing time for me.  When I spoke to Bhavini at ELVis for the very first time, she invited me along to the Hackney VI group, and I literally felt alive and hopeful that I would be back and part of the community again.

I started coming along to the Hackney group in February this year, and ever since then I’ve attended ELVis-supported events like the ten-pin bowling in Stratford, which I enjoyed very much.  The outings mean a lot to me and the rest of the group because it allows us to visit new places that we wouldn’t normally go to because ELVis always does a great job at making sure they’re accessible for vision impaired people, and that’s great!  We also have meetings with guest speakers like Graham from ELVis who gave us a demonstration of the Amazon Alexa and the Google Home speakers.  The group members find these meetings extremely useful because they’re informative and we learn about technology or services that can enhance our independence.

I feel really blessed to be part of the Hackney VI group.  I feel a sense of security knowing that there’s a group where I can meet other people who live with sight loss.  It has helped boost my confidence as I have more things in life to look forward to.  Also, social groups in general are important for vision impaired people because it gives us the opportunity to make new friends, exchange vital information and make a difference in the community.  I hope everyone who reads my blog post and isn’t part of a social group is encouraged to get out there and find one. Alternatively, if you live in Hackney, why not get in touch with East London Vision to sign up with our group.  I hope to meet you very soon!

IMG_3981
Photo of Tolga holding a bowling ball at a ten-pin bowling event with ELVis at Westfield Stratford City.

Written by Tolga, member of the Hackney Vision Impaired Group

Advertisements

ELVis Collecting Donations on Geranium Day, Friday 18th May

Everybody knows that the symbol of the poppy represents those who have fought and died in military conflict, but how many people are aware of the symbol of vision impaired people in London?  For those who don’t know, it is the geranium, a five-petalled flower that blooms from springtime to early autumn.  While it’s uncertain as to why this particular flower was chosen to represent people with sight loss, the symbol was first used in the early 1920s and was the brainchild of newspaper magnate Sir Arthur Pearson.

Pearson, the founder of the Daily Express, was an early campaigner for vision impaired people.  Having lost his sight through glaucoma, he spent a large part of his life raising awareness of the difficulties that VI people could face.   Pearson was frustrated by the barriers faced by vision impaired people who not only had to go about their daily lives in a society that was largely unaware of their needs, but who also had to contend with post-war poverty, which often had a greater effect on their lives than it did on the lives of their fully-sighted friends and neighbours.

He therefore decided to spearhead a publicity campaign that would encourage the public to donate money to causes that would help to support the vision impaired population of London.   Just before his death in 1921, Pearson organised a ‘Geranium Day’ appeal to raise funds for the blind and partially sighted people of the capital, having used his contacts to gain a royal patron, Princess Louise.  From the funds raised through this, the Greater London Fund for the Blind was born.

Geranium Day continues still, and is a time when sight loss organisations and charities have the opportunity to raise money on public property across London.  This year, the London-wide collection day will be on Friday 18th May, and East London Vision will be using it as an opportunity to raise funds for our own projects.  The whole team will be out and about, and as well as collecting money we’ll have the opportunity to talk to the public about sight loss as well as about the work that we do to help provide support to the vision impaired community in East London.  We’ll be spread out across the region, with groups at Liverpool St. Station, outside Westfield shopping centre in Stratford and at Canary Wharf, and we’ll be around for most of the day between 8am and 5pm.

So if you’re free next Friday, then come along and say hello!  It’ll be great to see as many of our friends as possible.  And if you’d be interested in joining us and helping us collect money for part of the day, then you’d be more than welcome.  Please phone the office on 020 3697 6464 if you’re interested.

Sir_Arthur_Pearson
Portrait of Sit Arthur Pearson

Written by Nicola Stokes, ELVis Service Development & Delivery Manager

Raising Awareness of Vision Impaired Passengers at Becontree Bus Garage

Recently, myself and Masuma visited Becontree Bus Garage to talk to a group of TfL bus drivers about the challenges blind and partially sighted people face when travelling on buses.

We gave them spectacles to wear which simulated 6 common eye conditions: macular degeneration, diabetic retinopathy, glaucoma, tunnel vision with cataracts (RP), hemianopia and cataracts.  Then, we asked them to read bus numbers, locate seats, and get on and off the bus.  They all agreed that the tasks were very difficult to do with the simulated spectacles on.

Next, we demonstrated various canes- the long cane, which is used as a mobility aid, the symbol cane, which is shorter and thinner, and used to highlight that a person has a visual impairment, and a long, red and white cane, which is used by people with both a hearing and visual impairment.  The bus drivers explained to us that when they see a person with a cane or guide dog waiting at a bus stop they are obliged to stop regardless if the person has their hand out or not, and they would let them know what bus number it is.

We then discussed an important issue for a majority of VI passengers- when multiple buses arrive at a bus stop it becomes very difficult to see the busses at the back.  Because of this, VI passengers often get left behind.  Therefore, we suggested that subsequent buses behind a trail should wait at the bus stop to allow passengers to find out what the bus numbers are.  Moreover, we mentioned that it’s not always easy to locate the Oyster card reader, as well as find an empty seat.  The drivers said that passengers with a freedom pass do not have to tap the reader.  They can show it to the driver, or the driver will know by seeing a white cane or guide dog.   Furthermore, most buses have mirrors that allow the driver to see the entire bus, so they asked if it would be helpful if they should inform VI passengers where the empty seats are.  Lastly, we also advised the bus drivers that if a bus is re-routed/diverted or stopped short of its destination, then it is helpful to have an audio-announcement.  Without one, a vision impaired person does not know where they are on their journey, and can leave them feeling lost and disoriented.

Overall, the outcome of the meeting was very positive.  The drivers who participated in our vision awareness training were glad they attended.  It’s always a pleasure to work with organisations like TfL to help improve the quality of travel for people living with sight loss.  Before you go, I would love to hear about your experience of travelling on public transport so we can give feedback at future training sessions.

f99ea510-3822-4d3c-b916-79368d17a74b.JPG
Photo of Bhavini and Masuma with a bus driver who is wearing a simulated spectacle.

Written by Bhavini Makwana, ELVis Activities Coordinator

Edited by Ray Calamaan, ELVis Communications Coordinator

ELVis Self-Defence Sessions Are a Success!

Not all, but some blind and partially sighted people can feel more vulnerable when out and about and knowing how to defend themselves can be a real confidence booster as we have been learning.  Thanks to funding from the Primary Club we are in the process of holding a 10 week self-defence course with self-defence experts 1Touch project.

On week 6 of the sessions, we took the opportunity to speak to attendees to hear of their experiences so far.

We caught up with Aqua from Newham who has now been coming along to the classes for a while.

“I’m feeling very empowered and a little bit secure about myself when I go out.  It shows me that if anyone came after me then I’d have a chance to get away from it.”

Umit from the 1Touch Project who is running the sessions for ELVis comes from a boxing background.  He lost his sight around 10 years ago and teaches self-defence to blind and partially sighted people.  He explains how the ‘1Touch’ concept works.

“We teach people movements they can use in a one touch position- they can touch and feel what’s happening without needing to be able to see.”

Neil from Waltham Forest, who is another one of our attendees, has also been benefitting from the classes.

“Self-defence can be challenging with lots of moves to remember.  We have been learning various escape and attack positions.  I do feel confident in defending myself and hopefully should be able to remember the techniques, as long as I keep up the practice.”

Deniz has been assisting with the classes and thinks participants are doing great:

“Throughout the programme the participants have been progressing amazingly.  I know a few people that have come along not knowing anything from the start to becoming one of the best in the class.”

I’ve had the opportunity to take part which has been great.  I feel I’ve learned a lot in a short time.  The challenge for me really is to be able to retain the techniques should I ever find myself in a situation requiring them.  However, I’m hoping this won’t be the case.

Neil feels that he would be somewhat more prepared should he ever get attack, although, we all hope this doesn’t ever happen to him.  Also, Aqua has started to feel strong in herself as a result of the sessions and hopes to do some more classes to build her confidence further.   We are certainly looking forward to having Aqua, Neil and all the other attendees join us for the remaining 4 sessions.

IMG_0754
A photo of Masuma practising self-defence with ELVis member Neil.

Don’t forget to watch our YouTube video of our members participating in a recent self-defence class.

Written by Masuma Ali, ELVis CEO

Joanna Lally’s Big Half Marathon Success

The Beast from the East certainly had us all on weather watch throughout last week. However, Saturday (3rd March) arrived and the snow melted away and you wouldn’t have even known we’d had any of the white stuff in London! With the weather looking more promising it was confirmed that the very first Vitality Big Half Marathon would go ahead on Sunday 4th March.

Masuma Snowman for Blog Article
Photo of a snowman wearing a hat and scarf made by Masuma Ali during the week The Beast of the East brought snow chaos to the UK.

Wrapped up in my many layers I joined Team ELVis at our spectator spot by Bermondsey Station, which was mile 8 for the runners, to cheer on our amazing Big Half runner Joanna Lally. Over 11,000 runners lined up by Tower Bridge for the start of the race and finished at the iconic Cutty Sark in Greenwich.

We had the honour of seeing the four-time British Olympic champion Sir Mo Farah run past us before streams of other runners started to arrive. It was fantastic seeing Joanna at mile 8, who was in very good spirits. She has done an excellent job in raising over £600 for us to be able to continue running more technology group sessions to blind and partially sighted people. There is still time to donate and help Joanna to reach her target of £1000. You can donate on https://mydonate.bt.com/fundraisers/joannalally1.

We arrived at Greenwich Park to meet our runner Joanna as well as Jessica Beal who ran for South East London Vision, our sister charity covering the 6 boroughs south of the River Thames. Greenwich Park was a burst of energy with the Big Festival in full swing with live music and plenty of food stalls. Both Jessica and Joanna were thrilled at their achievements and rightly so as it was both their first half marathon. Joanna finished in 2 hours, 26 minutes and 30 seconds and Jessica in 2 hours, 24 minutes and 56 seconds.

Many congratulations to both ladies, you’ve done yourself and all of us proud!

IMG_4292
Photo of Joanna Lally smiling and holding up her Big Half Marathon medal.

Written by Masuma Ali

How I’m Preparing to Run The Vitality Big Half Marathon

The journey so far

I am approximately half way through training for the Big Half, with exactly a month to go.  My first run was a test to make sure I could actually run for at least 30 minutes without collapsing in a big heap on the floor, which fortunately did not happen, and I felt invigorated to create a training plan, using resources from The Big Half marathon website and gathering advice and tips from friends who have previously run marathons.

There were a few initial points to tick off, and which I’ve already experienced the benefit of: get a good pair of running shoes, build up distance and time gradually, download a running app to track progress and take rest days in between big runs.  I wrote up my plan with weekly goals of what distance/time I wanted to reach.  Then suddenly the fear set in, and for the first week and a half of that plan I couldn’t bring myself to run.  I procrastinated through other means of building up my overall fitness; a yoga class, swimming and a couple of long cycles.  This definitely wasn’t a bad idea, as it gave me a chance to exercise and stretch other muscles in the body.

The breakthrough

Thankfully, with some encouragement, I managed to part ways with that apprehension and completed my first 5km run, and survived (side note: stretching afterwards is SO important!).  Each time I’ve trained since I’ve enjoyed it.  I realised that years of telling myself that I wasn’t a runner had instilled a belief that it must be an awful experience.  Running is certainly still challenging, and requires a lot of preparation [tip: set aside a good couple of hours for each run, to find that state of mind, warm up and cool down, perhaps take a shower after], and those first twenty minutes, for me personally, are a huge hurdle.  The self-doubt floods in, and I think about going home, or walking to the nearest coffee shop.  No, that can wait, I remind myself.

It’s all in the recovery

Last week I met with another friend who is taking part in the Big Half and we made more plans – but this time it wasn’t so much about the training, but for what comes afterwards: the Recovery. A huge meal on the Sunday afternoon post-race, then a sauna trip the next day and some more yoga to stretch out our sore muscles.  It’s also important, however, to build in room for recovery at every stage in preparing for the half marathon, and remember that you can’t expect to do it all in one go!

It was a great turning point to start thinking about what follows the race, and that there is still the rest of life to get on with once it’s over, but for now I am taking it, quite literally, one step at a time.  And with just four weeks left I’ve still got some way to go, and every little bit of support has given me a massive boost.  You can follow more of my training progress on Twitter and donate via my fundraising page here: https://mydonate.bt.com/fundraisers/joannalally1

Thanks for reading and all your support so far!  And if you’re free on Sunday 4 March then please come and join East London Vision to cheer me on along with the other race participants!

You can also watch my interview with Ray from East London Vision.

Written by Joanna Lally

 

Charles Bonnet Syndrome: The Eye Condition That Causes Hallucinations

Visual hallucinations, ranging from spots of coloured light to full-bodied people, are, for many vision impaired people, a normal part of their sight loss.  These are symptoms of Charles Bonnet Syndrome (CBS), a recognised medical condition which many people with vision impairment experience at some point during their sight loss journey.  As you might imagine, these sorts of experiences can have a profound impact on people’s lives.  However, Charles Bonnet Syndrome is a condition that isn’t always well-understood even by medical professionals, let alone the general public, and so it often goes ignored or misdiagnosed.

I attended a workshop on the first ever Charles Bonnet Syndrome Day on 16th November this year, and there I heard from several people who have experienced the condition first hand.  Their stories brought home just how serious this condition can be.  Some would see grotesque gargoyle-like figures sitting in their living rooms, while others would see patterns covering the floor and walls to such a degree that they became disorientated and couldn’t tell where anything in the room really was.  While there is currently no known cure for CBS, there are various tricks that people can use to help dispel the images, such as wearing sunglasses, adjusting the light levels of the room, or distracting the brain by turning the TV or radio on or off.

However, for many people the first step in dealing with this condition is to understand what it is that they are experiencing.  We heard several sad stories during the day about people with CBS who had been misdiagnosed with dementia, and had therefore never received the right support or treatment for their condition.  It is important to remember that the hallucinations experienced by people with CBS are vivid, but they are visual only, and cannot be heard, felt, tasted or smelled.  But if this is the case, and there is no serious memory loss and no other diagnosed mental health issue, then the hallucinations are more than likely to be the result of Charles Bonnet Syndrome.

The charity Esme’s Umbrella, which ran the workshop in November, is there to give information, advice and support to anybody who is experiencing CBS, or who is concerned about someone they know who is living with the condition.  They can be contacted by phone (0345 051 3925) or email (esmesumbrella@gmail.com), and they also have a website with details of coping strategies and the latest research on CBS, which can be found at http://www.charlesbonnetsyndrome.uk/.  If you would like to find out more about the condition, then please do not hesitate to contact them.

umbrella
Photo of the Esme’s Umbrella Charity logo. Its design includes dozens of colourful umbrellas and the words ‘Esme’s Umbrella. For everyone working for the greater awareness of Charles Bonnet Syndrome’.

Written by Nicola Stokes