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“How I feel, how I cope and how I adapt…” Stargardt’s disease

Stargardt’s disease affects one in ten thousand people and I am that one…

Hi, I’m Elise and I have lived every day for the past ten years of my life with a life-altering rare genetic eye disease. I guarantee that if you were to ask somebody you know if they know what Stargardt’s disease is, they wouldn’t have a single clue. I also guarantee that if you were to meet me, not knowing a single thing about me, you would be entirely oblivious to the fact that I have a visual impairment (VI). It’s essentially what’s called a hidden disability, which often causes people to easily dismiss it and be completely unaware of how much it affects pretty much every single thing I do.

Perfectionism and Stargardt’s disease

Being a perfectionist and having an extremely creative mind, with a visual impairment, is challenging to say the least, with attention to detail being something I pride myself in, as well as the thing I visually struggle with most. Using the accessibility features on the software and gadgets I use day to day comes naturally to me, so I often forget how alien it all is for most other people and frequently when showing people how I navigate my work, it’ll shock and enlighten them. If I was to make a list of the number of little things I do each day to be able to access everything, it would be colossal!

The minute things that I don’t even clock I’m doing are generally the things that other people pick up on most, for example, sitting closer to computer and TV screens, and holding my phone closer to my face, or using my phone to take photos of labels or packets and zoom in. I have a blind spot in the centre of my vision, meaning I have to look to the side of something to be able to see it, people will often think that I’m distracted, looking at something behind them and will turn around to see what they’re missing out on, but once I’ve explained the reason, they never really mention it again.

Attending university

Studying for a degree at university is tough enough as it is, with deadlines, masses of research and a large portion of independent work. However, what most people find almost impossible to grasp is just how strenuous it is for me; studying with my condition is a never-ending obstacle in my path. But what I’d particularly like to share, is the way I have successfully found my way over, (not around), but over my obstacle, and adapted! With all of my projects taking me that little bit longer to complete than other students, I am granted a two-week extension for all of my work. Having this really eases the stress of taking longer to complete things and gives me the peace of mind that I deserve, to focus more on the quality of what I produce.

Technology is honestly my best friend when it comes to my condition, both at home and university. Enabling the zoom accessibility option on my computer comes so naturally to me now, that I could do it with my eyes closed. Quite often if I am unable to see the keys on a keyboard (and I don’t have my one from home with bigger letters), I can type without really seeing where any of the letters are at all, simply from memory! (I should really learn to touch type shouldn’t I…).

Frustrations of vision impairment

I’d say that having a visual impairment while also being a gym rat, can be frustrating, especially since going to the gym on a daily basis is something I have become completely obsessed with! Like other aspects of my life, I have the little adaptations that come naturally to me. For example, if I am clipping a handle onto one of the cable machines, I won’t even look at what I’m doing, it’s all done by touch. When using barbells, to gauge exactly where the middle of the bar is, I feel along it and place my hands just past the rough areas, (as I know this is exactly in the centre). I’m not sure how many other people do these things simply because feeling is sometimes easier than looking, but I do it all out of necessity. I could write an entire book purely on how I navigate the gym and I would absolutely love to share every detail!

I could go on and on about my condition for days on end. There is so much I would like to speak about, as to how I feel, how I cope and how I adapt to every aspect of my life with Stargardt’s disease, so if you would like to know more, or you have a burning question, I would be more than happy to have a chat!

Elise Heron, Digital Marketing Executive, Sierra Six Media.

Paralympic Games – my story

As well as being London Vision’s Development Manager, Jonathan Ward is a Paralympic athlete! He competed mainly in category F13 throwing events, and went to four Paralympic Games – learn more about Jonathan and his experiences of the Paralympics in his piece below:

Paralympics – my story

I can’t hear myself think. The crowd roars. Somebody says something to me. I can’t hear, even more noise from the crowd. I glance around and notice my fellow competitor has his hands over his ears. An official tugs my vest to attract my attention and it’s time to step into the circle and throw. I pick up an orange high flyer, a super-fast spin discus and walk into the circle. I breathe out, trying to relax, trying to connect my body to my mind, block out everything. I stand at the back of the circle, my left foot turns, my left knee. Right foot down, heel turns out, my arms moving fast: the discus is gone. The clang tells me I’ve hit the cage. I’m pretty sure the discus has flown away. Five more chances to get it right. I can’t come fourth again, can I?

Exhall Grange School and getting into sport

It all started in 1978, myself and fellow pupils we returned to Exhall Grange School for partially sighted children to find a grass track had been laid out on the field. It smelled great. I ran my first ever 400m in 90 seconds. It seemed a hugely long way. I putted the shot for the first time and then my favourite, the cricket ball throw. So, athletics had been added to my long list of sports, football, table-tennis, swimming, weight training, cricket. Two years later I stood on an athletics track for the first time. A black cinder track at Mile End. All the blind and partially sighted schools had gathered to compete.

Six weeks later my parents took me to Southend athletics club on my return home from school. I was easily the worst thrower in the squad. Strangely everyone else could see. I’d forgotten that people could see more than me, it took a while to work out the lay of land, who was who, and how it all worked. Even the little things like finding the men’s changing room. I went on to compete for Southend for another 18 years, first as a junior then a senior. In 1990 I was the club’s highest points scorer in the field.

Fierce competition

Back at school there was fierce competition, with many a sports day containing future Paralympic finalists and medallists, including Noel Thatcher, Anthony Hamilton, Mark Farnell, Robert Latham, and Mark Whitely. The competition between us often spilled into all areas, but that’s another story!

Whilst we were busy knocking lumps out of each other or thinking up crazier training routines or competitions, the Paralympic movement was professionalising and evolving. I watched with envy when my friends went off to compete in Bulgaria in 1983, then New York for the 84 Paralympics. The best I got to do at that time was write an article for the school newspaper about my friends’ exploits, but there’s a fair chance I made most of it up! I still have a copy somewhere.

Eyesight classification

In 1985 I went along for my eyesight classification. At that time there were three categories: B1 light perception at best; B2: a visual acuity of 2/60 or less or severely restricted fields and me at B3: less than 6/60 (that’s the top letter of the eye chart). A by product of the classification process was the diagnosis of my eye condition, some weird macular thing that meant I had no central vision – which explained why I kept missing the ball when playing in goal. See Metro Blind Sport for details of the classification system.

It would be fair to say that my athletics did get me in a little trouble in my formative years: groundskeepers really don’t like your throwing shot puts on their best laid lawns! I didn’t always have stadia in which to train and throwing the discus in public parks with members of the public and their dogs wandering around is a little hazardous when you don’t know they are there, and they don’t know you can’t see them. That’s when I started training very early in the morning – something I still do to avoid people and potential collisions. A metal detector was also a crucial part of my kit as it allowed me to find the wayward objects I had thrown.

Off to the Paralympics in Seoul 1988

Seoul was to be my first Paralympics. I remember sitting on the 15-hour flight thinking “what happens if it all goes wrong? Someone has paid a lot of money for me to be on this plane”. But there’s not room for doubt in sport. I binned the negative thoughts and focussed on all the good stuff. Seventy-five thousand people came to the opening ceremony in Seoul. The speeches were long and boring but the fireworks shook the ground they were so loud.

My first global competition was in the discus, and I managed to lose by 2cm to a fulltime athlete from Australia. I went on to compete in the shot, javelin and the multi event pentathlon (winning gold in the shot put and bronze in the pentathlon to add to his silver in the discus). As someone who worked fulltime and trained in local parks. I learnt much from the fulltime athletes from Australia, Soviet Union and East Germany. Seoul was my first Paralympics: but far bigger than that, it marked a shift in public consciousness of disability sport, an increasingly professional approach by competitors, officials and administrators. Seoul was the benchmark of the modern Paralympics.

Moving on from Seoul Paralympics

I went home from Seoul to continue throwing weights around in the gym and a large rubber ball at the sea wall amongst many other slightly crazy things. In dark and possibly smoky rooms, sports administrators and managers beavered away, producing Barcelona 1992. A games where I was to have my bronze medal upgraded to silver as my Hungarian rival became the first Paralympian to fail a drugs test. A story which made the national press at the time, and in some ways highlighting the shift in thought about the games and disability sport.

For me, Barcelona was notable in two further ways: John Anderson (of Gladiators fame) was the team manager and he had placed a ban on athletes eating ice creams from the canteen. I’d been on a quick run to the canteen to pick up a supply of ice cream for my Olympic flat mates-when on return I bumped into John. For discretion’s sake I’d stuffed the ice creams (about 10 choc ices) in my short pockets as we stood chatting in the Spanish sun. I could feel the ice cream running down my legs. My next notable event was that I didn’t get to compete in the discus as I returned home early to the UK for the birth of my twin daughters. To this day I remind them that they robbed me of a medal.

The nineties rumbled on with visits to European and World Championships and, of course, Atlanta. No medals for me in Atlanta despite registering personal best performances. A strange games, for many and disappointingly no ice cream.

National Lottery money

1997 brought a new shift: National Lottery money. I was paid to play sport – not enough to give up work, but more than enough for all my expenses, clothing and if I needed it, treatment. It came at a price. Training schedules had to be submitted, plans approved and performances monitored. If you didn’t perform then funding was cut. I was fortunate: I hit my targets  so my funding increased and in the run up to the Sydney Games in 2000 I was able to work part time for six months with the National Lottery paying the shortfall.

I could afford taxis to the track, new shoes, weight training equipment. I never intended to become a full time athlete – funding came too late for me I was at the later end of my career but some of my younger contemporaries had difficult choices to make. Get a ‘real job’ or get paid for your sport where you are only one poor performance away from not making your mortgage payments. I know many athletes had sleepless nights as to whether to fully immerse themselves in a sport-funded existence.

Sydney 2000

I did come fourth in Sydney after again producing a personal best in the discus. A jarring experience, after working part time and training far more efficiently than I had ever done before. There was some solace to be found with a bronze medal in the shot put.

Australia got the Paralympics right, inclusive, fun, and competitive. The team was voted BBC sports personality team of the year – but I was far too stingy to pay for a replica trophy. I did go the reception at Buckingham Palace, but failed to see the Queen despite her standing right next to me. I also went to a reception with Tony Blair 12 years after getting to meet Margaret Thatcher.

I had one more year of international athletics, visiting Poland and competing in the European Championships. I could have gone to the World Championships in 2000 to compete in the first ever hammer competition, but I decided to get married instead.

Still competing and hot tips for Tokyo

I’m still competing in Masters and league athletics and I’m looking to organise my time in order to compete in the 2022 Masters Athletics Championships. Sport has brought me great friends, fantastic memories, and a huge degree of resilience.

I want to wish all the Paralympians the best of luck in the upcoming Paralympics. Managing performance in a COVID safe way is a challenge I’m glad I’m not facing.  Look out for the F11 (B1) long jump final as jumping 7m plus without any useful vision has to be applauded.

If you are interested in Paralympic history a quick google brings up many websites with detailed histories, pictures and results. If you would like to learn more about blind and partially sighted sport take a look at what Metro Blind Sport get up to or contact British Blind Sport.  If you have any questions for me about how to go to the gym, lift weights or play sport with low vision drop me a line Jonathan.ward@londonvision.org

Check out Jonathan’s Paralympian page.

Access refusal: a problem that’s not going away

Being matched with my first Guide Dog Colin, 3 years ago this month, was a life changing moment. The feeling of going out on my terms meant I regained my independence, and it gave me a new sense of confidence. I walked faster than I did with a white cane, I wasn’t as anxious about going to unfamiliar places and was able to make unexpected journeys without thinking twice. I fell in love with him instantly. I felt proud and sometimes, yes, I actually forget that I am blind.

My first access refusal

Then it happened. Something that you would never get informed about. How to deal with it, not just practically but emotionally too. How to pick yourself up without feeling broken, or how to regain confidence. Not just within yourself, but in humanity too. My first encounter, when I was left stranded for 90 minutes after everyone had gone home from work. The area was deserted and it was getting dark. The minicab driver approached and then left after discovering I was the passenger. The minicab firm kept making excuses and I just felt abandoned, cold, humiliated, and worthless.

I will never forget my first Guide Dog access refusal and feel quite emotional just thinking about it now. However, it does not stop. Further refusals have occurred with other minicab drivers, Uber drivers, restaurants, dentists, places of worship and other businesses too. It also happens with loved ones due to the lack of knowledge and misconceptions around what a Guide Dog really is.

Lockdown access refusal

In August 2020, after being in lockdown, I went to a restaurant, the first time that year. My husband and I walked in this Italian eatery and there it was, the all too familiar line: “Sorry no dogs allowed”. We did the usual: explained that he is a working Guide Dog, showed the yellow book and shared information online proving what we are stating is true, moreover that it was illegal to refuse a working Guide Dog. He was in his full harness but sadly nothing was working.

The owner, only a few metres away, eating his own lunch, did not want us in his restaurant and that was final. Made to feel ashamed and humiliated yet again, we walked away with our heads down, Numb, yet determined not to let this experience consume us, we searched for somewhere else.

To our horror, it happened again, the very same afternoon. This Greek restaurant eventually listened after we spent twenty minutes explaining the legal requirements around a working guide dog. He was willing to call the manager but at that point, I was exasperated and I just wanted to leave. I was tired of fighting, and my appetite had disappeared.

Finding the strength to fight the access refusal

The next few days filled myself and my family with sadness. I thought a lot about the encounters and felt simultaneously annoyed and weak. Despite this, the messages I received from loved one and strangers alike gave me strength and encouragement. I knew I had to act this time around. I didn’t want another disabled person to feel inadequate, especially not because of the ignorance of other people.

Legal action

The process of taking legal action against the restaurant owner took almost 12 months. Initially, the owners ignored all communications from my representatives, and then denied the refusals. Luckily, I had video evidence for one of the access refusals – experiencing access refusals repeatedly taught me to film encounters as a matter of course.

The 12 months were stressful, so much so that sometimes I felt like giving up as I was forced to re-live that moment, and the way I felt, time and time again. But the thought of them refusing someone else and treating them as horrifically as they had treated me, gave me the ammunition I needed to keep fighting for justice. Eventually, the restaurant manager agreed to settle, sparing me from having to go to court.

Terms of the settlement

As a result of the agreed settlement, in my favour, the restaurant has now employed a Disability and Equality Adviser for training staff. Assistance Dogs welcome stickers are displayed in their establishment, and I was compensated.

I wish I could say that this was the last time I had to go through this kind of experience, but sadly, that’s far from the case. Fresh from the news of the settlement of the last access refusal, it happens again. This time in high street shops – Primark and Superdrug. So, the emotional turmoil begins all over again, as I must prove I have as much right to shop as everyone else, and state the laws around guide dog access to staff. Even when one battle ends, it seems the new one is never far behind.

Who should lead this fight?

Is it the responsibility of individual guide dog owners to keep fighting this fight? I have only had my Guide Dog for three years, and I have experienced countless access refusals – as have 75% of assistance dog owners. But this isn’t a new problem – it’s been happening for decades!

Guide Dogs for the Blind has been campaigning about access refusals but has focussed on taxis and minicabs. It wants the Government to commit to a date when they will introduce the requirement for disability equality training for all taxi and minicab drivers. But it’s clear this problem goes much further than taxis and minicabs.

Equality Act 2010

My recent experiences at restaurants and at high street shops shows that messaging around the Equality Act 2010 isn’t getting through. Primark and Superdrug employees undergo training for their roles – why isn’t equality and diversity training part of this training?

More pressure needs to be put on the Government from disability rights organisations to force establishments to uphold the law around equality. All access refusals should be a criminal offence – not just ones involving taxis and Mini Cabs. Too often it falls on the victim to advocate for themselves, which is an exhausting and often demoralising process.

Sight loss and service animal organisations need to work with security companies to educate their staff, and local authorities need to ensure that businesses operating in their boroughs understand and uphold the law. The fact that this is still happening in 2021 is unacceptable.

If you’ve had an access refusal, get in touch with the team on info@londonvision.org or on twitter @LondonVisionUK

Bhavini Makwana, London Vision Engagement Manager

One year of the Managing Sight Loss course

In July 2020, London Vision switched from providing in person existing Living Well with Sight Loss courses to an online only format. Renamed Managing Sight Loss, the London Vision team has now facilitated 75 sessions over the past year!

The sessions explained where to get help and advice, how to contact your local sensory team and how to explore simple solutions to everyday living with sight loss. The sessions also addressed the benefits of being registered as blind or partially sighted, introduce you to assistive technology and advise on how to get out and about with confidence.

From face to face to Zoom

The London Vision team facilitated the sessions through the Zoom platform. Using Zoom gave attendees the opportunity to join online via computer or smartphone, but also to join using a landline phone.

In the lead up to the sessions, London Vision produced guides for using

 Zoom, which were shared with attendees, and team members were on hand to help people join the sessions. The hands on support from the team meant that:

93.8% of Managing Sight Loss course attendees found it easy to

 join the sessions, with a further 6.2% joining with help from a partner.  

The sessions attracted a range of attendees from varied sight loss backgrounds, but 75% of attendees were living with sight loss.  21.9% of attendees worked in the sight loss sector or with people who are blind or partially sighted, and 9.4% were friends or carers. The sessions welcomed family members and friends, and input from sight loss sector professionals was appreciated throughout the programme.

Programme content

Initially the sessions covered many of the same topics in the Living Well with Sight Loss course, and were shaped around the following themes:

Registration: Your rights and the benefits

These sessions explained the who, why and what of being registered as severely sight impaired or sight impaired and explored the benefits and rights that this brings.

Getting out and about safely

This session explored techniques and tips for independent travel, with advice on where to get help with public transport, and an opportunity for attendees to share their own experiences and advice.

Life hacks: in the kitchen

These sessions looked blind hacks for cooking with confidence, touching on assistive tech for kitchen and simple adaptations.

Life hacks: for everyday living

These sessions looked at different techniques for living independently with sight loss – from filling a cup with water to cooking a roast dinner.

Sport, leisure and hobbies

Co-hosted with Metro Blind Sport and Vocaleyes, these sessions looked at the different kinds of sporting and leisure opportunities on offer for people with sight loss.

An introduction to assistive technology

Led by Graham Page from Thomas Pocklington Trust’s technology team, these sessions explored how every day technologies can be made usable by people with sight loss.

Advanced assistive technology

TPT’s Graham Page was joined by Davinder Kullar from RNIB’s Technology for Life team for more advanced assistive technology sessions This session is for people who regularly use technology but want to trouble shoot a problem or ask how to complete a certain activity. If you’d like to come along, we’d like to have your questions in advance.

Feeling good, staying healthy

These sessions addressed simple techniques for living a healthy and relaxed life with sight loss.

In the first few months of programme delivery, the team facilitated 32 sessions, with 277 people attending, working out at an average of 8 attendees per session. Sessions were held in the afternoon and early evening, ensuring that there was a choice of times for people to attend.

Attendees said of these first sessions:

“All the courses were excellent, I learnt a lot and enjoyed hearing from other people with their questions. The sessions had a lovely atmosphere”

“It was a pleasure to attend the session and also hear from you.  The session and all the information sent was fantastic, excellent”

New Managing Sight Loss sessions for 2021

After six months of successful sessions, the Managing Sight Loss team introduced new themes requested by attendees:

All things reading

Covering audiobooks, various technologies that assist with reading, and libraries such as the RNIB lending library.

Making the most of your vision

Delivered alongside the Macular Society, these sessions offered advice on low vision aids, and the range of different ways you can make the most of your remaining vision.

Goal setting

Exploring achievable life goals and how to stick to resolutions

Online shopping

This session explored the world of online shopping and using assistive technology to shop.

Beat the scammers – fraud and scam awareness

Much requested, this session was led by RNIB’s Marie Kehoe and addressed the common scams circulating and new ones that emerged out of the pandemic.

All things TV

Led by London Vision’s Renu Walia, All things TV looked at how to make the very best of your TV from sitting a little closer to using binoculars, audio description and voice guidance on smart TVs.

Shopping and dining out

As lockdown eased, the MSL team hosted a session with tips for dining out, and for making shopping easier.

In 2021, the team also created the Managing Sight Loss resources page, which collected together much of the content covered in the sessions. These pages are expanded versions of the notes sent out to attendees following sessions, and the information is freely available.

Most popular Managing Sight Loss sessions

The most popular sessions over the past year proved to be ones focussed on Assistive Technology. The introduction sessions helped attendees take their first steps in the world of assistive tech, and the advanced sessions provided a space for specific questions and exploring exciting new technologies.

The Managing Sight Loss team also established a regular drop in on a Friday lunchtime as a more informal way for attendees to share their tech knowledge and socialise. The introduction to assistive technology and advanced technology sessions had nearly 150 attendees taking part over the past year.

One off bespoke sessions proved very popular, with Shopping and Dining out, Beating the Scammers, and the All Things TV all attracting 18 attendees per session on average.

Some of the most successful sessions were also the ones held in conjunction with other sight loss organisations. The Managing Sight Loss team would like to thank the Macular Society, Metro Blind Sport, Vocaleyes and RNIB for all the assistance in making the programme varied and relevant for participants! Macular Society helped deliver the Making the Most of Your Vision sessions, Metro Blind Sport and Vocaleyes hosted the sports and leisure sessions, and RNIB’s Davinder Kullar, Paul Porter and Marie Kehoe contributed their considerable expertise to the reading, technology, and Beating the Scammers sessions.

Survey results

We surveyed Managing Sight Loss course attendees, and 40.6% of respondents said they were extremely likely to use the tips, tricks and information shared in the sessions. A further 40.6% said they were very likely to use these tips.

100% of respondents felt they had the opportunity to contribute during the sessions, and that it was a safe and welcoming space to share experiences and knowledge. The sessions were:

“Really good, attendees were in similar situations and so were able to understand each other. Everyone was very supportive, and I gained a lot from the sessions”.

93.5% of respondents would recommend the sessions to others, underlining the usefulness of the content.

In fact, 56.3% of attendees rated the content of the course as excellent. 34.4% rated it as above average and only 9.4% rated the content as average. As one attendee said, the sessions were:

“Really good, [all] attendees were in similar situations and so were able to understand each other. Everyone was very supportive, and I gained a lot from the sessions”.

As a result of attending a session, 62.5% of respondents felt better connected, and 65.6% felt they knew where to go for help in the future for living with sight loss and 25% felt they had a better understanding of the rights and benefits to which they are entitled.

Since moving to online courses in July 2020, London Vision delivered 75 sessions, with more than 700 attendees. The team would like to thank Thomas Pocklington Trust for supporting the delivery of the sessions, and the National Lottery Community Fund for funding the programme in 2020.

Working Age Forum stories: My lockdown hobby

Working Age Adventures in the Capital

For the first instalment of the Working Age Forum’s Working Age Adventures in the Capital series,  Working Age Forum attendee Eshita Unadkat talks about her newly rediscovered lockdown hobby: photography!

My lockdown hobby

Do you remember cameras which required a film roll? Each photo you took had to be a special one as there was a limit to the number of photos you could take before replacing the roll. I really enjoyed clicking as a child but was conscious about letting others down in case a photo did not turn out the way we expected. There was also the fear of the film roll not inserted properly or just being blank. I always waited in anticipation for the prints to come through. To my surprise, the photos looked good most of the time, despite my visual impairment. Thus, I landed up with the important role of being our family photographer and capturing beautiful moments.

With time, digital cameras were introduced, and I got busy with growing up responsibilities so lost interest. I would take photos here and there but there was no passion.

Eeya’s Blind Photography

One day, a close friend complemented on an image I had taken on the iPhone. For some reason, that triggered memories of my childhood and reminded me of how much I enjoyed playing with the camera. I began noticing more complements from friends and colleagues. Being severely short sighted all my life, my perception of a good picture would be different to sighted people. The thought, ‘they are just being nice’, was always at the back of my mind. Hence, I was not feeling too confident.

Eeya’s Blind Photography was born in early January 2020 when I was having coffee at McDonalds in India with a close friend, who encouraged me to create an Instagram page after approving my photo of a coffee cup on the McDonalds tray. Being a private person, making a public account was a big leap. I bit my tongue and just decided to do it anyway. Between then and February, a few more close friends supported my idea and approved photos that could be displayed in my gallery.

Then came the pandemic, where my working world and mental health ended up climbing a steep mountain with no signs of the summit. I could not cope so decided to give photography a break once again.

iPhone Photography Academy

The game changed when I signed up to the iPhone Photography Academy in May 2020. Now, my hobby assignments involved taking photos fulfilling specific criteria such as focus, exposure, portrait, landscape and so on. I was asked to submit each photo into a private Facebook group where other members gave constructive feedback. This time, I was getting complements and reassurance from strangers. Eeya’s Blind Photography started gaining popularity and I became a part of a small community of photographers.

When asked how I was able to shoot amazing photos, my response always was that I got lucky. Someone once commented about a stork being right in the centre of one of my photos. As I had not seen this before, I magnified the image to have a closer look and to my surprise, I found a bird like structure right in the middle. It looked like a sculpture. Then I compared it to another image of the same place taken at a different time, the bird was not there! I started believing in my abilities when my photos began featuring on various Instagram guides and were being shared by popular photographers.

Losing motivation for my lockdown hobby

As the days got darker and colder, I was losing my motivation. To help me through, I decided to set myself a 66-day walking challenge and invited my Instagram friends to join in virtually. I became accountable. I woke up each morning with excitement of walking to my local park and looking for something to shoot. I will have clicked hundreds of pictures of swans swimming around and showing off their beauty. I felt more connected with nature and was starting to appreciate each season that was passing by from beautiful shades of autumn colours to bare trees and little snowflakes in winter. Spring just brought a leap into my footsteps, and I found myself chasing the pink cherry blossom wherever it was blooming.

Light, colour and contrast

My photos are all composed around light, colour and contrast as this is what I am able to see. Since bright light and glare make me uncomfortable due to my albinism, most of my photos are taken either early mornings, just before or around sunset or on night mode. To understand what I can see, let us compare a photo with low number of pixels to the one with a higher number. There will be lesser detail in the first one while the latter will be sharper and clearer. My vision has low pixels.

Photography has helped me express myself and create awareness around my genetic disorder. It tells a story that I struggle to put into words. My lockdown hobby has become an antidote to my mental health, and it is something that will stay with me forever.

 

Eshita Unadkat, August 2021.

Eshita attends London Vision’s Working Age Forum. Make sure you check out Eshita’s photography on her Instagram page!

Additional dockless bike scheme to hit London streets

In August, Human Forest, a UK-based ultra-sustainable mobility company, will launch a fleet of dockless electric bicycles which could add to London’s problem with street clutter.

Islington and City of London will be the first boroughs to offer the bikes, although users will be able to start and end their rides in Camden and Kensington and Chelsea. More boroughs are slated to be served by these e bikes after the initial launch in August.

Gerald Carew, Chief Officer at London Vision, said: “These new electric bicycles will be operating largely on a dockless model, similar to that of Lime, Freebike, and Jump. Unfortunately, the dockless bike model contributes to the growing issue of street clutter on London’s pavements and footways.”

Streets for All campaign

The Sight Loss Councils’ #StreetsForAll campaign and Transport for All’s recently launched Equal Pavements Pledge highlight the problems caused by street clutter, and the impact cluttered and inaccessible pavements have on people with disabilities. Additional dockless bicycle schemes in London have the potential to worsen this ongoing issue.

To quote Transport for All: “Disabled people cannot be forgotten as we reopen society”.

The rush to introduce new micro mobility schemes in London to satisfy the mayor’s transport strategy cannot come at the expense of disabled people’s transport and mobility needs.

Changes to the city’s infrastructure have already happened. These range from the pedestrianisation of large areas of central London to allow for al fresco dining and outdoor drinking space, to the installation of Low Traffic Neighbourhoods (read Transport for All’s Pave the Way report into LTNs). These changes happened without consulting some of the people who would be most impacted by them.

Some of these changes do have a positive impact on the environment and have allowed sectors of the population to interact and safely during the pandemic. Frequently, they have had a negative impact on people with disabilities and have made previously accessible parts of the capital newly inaccessible.

What we ask

  • London Vision asks that Human Forest’s fleet of e-bikes do not further contribute to London’s problem with street clutter.
  • We ask that Human Forest ensures its riders park responsibly and takes steps to penalise riders that do not.

Transport for London Dockless Bike Share Code of Practice

In September 2018, Transport for London produced the Dockless Bike Share Code of Practice; section 8 of this document relates to parking, with the below points particularly relevant to blind and partially sighted and disabled people in London:

Point 8.1: Operators must engage with the relevant Highway Authority, organisations such as Network Rail and any other landowners to establish guidelines for where Dockless Bikes can and cannot be parked. This will include general parking rules and details of specific areas where parking is prohibited and Operators should ensure that customers trying to end their hires in these locations understand clearly what is permitted and the sanctions for non-compliance” (pt. 8.1 pg. 10)

Point 8.2: Restrictions applicable to eligible bicycle parking zones on the footway includes, without limitation:

  • Dockless bicycles shall not be parked within 2 metres (m) of a junction;
  • Dockless bicycles shall not be parked on a footway where the effective distance between the building line and the kerb is less than 2m wide. This is in addition to a 60cm parking provision for Dockless Bicycles;
  • Dockless bicycles shall not be ridden or parked within Royal Park premises. (pt. 8.2 pg. 10)

Point 8.6: Operators must inform customers how and where to park a Dockless Bicycle properly in their mobile application visually. It is recommended using best practice/ poor parking images and maps, and ensuring that the customer agrees with these in order to unlock the bicycle and is made aware of any sanctions associated with non-compliance. Examples of where not to park include, without limitation, fire escapes, emergency exists, lifts, accessibility infrastructure (wheelchair lifts or ramps) and TfL cycle hire docking stations. (pt. 8.6 pg. 11)

As part of its preparation for launching the scheme, Human Forest must pay particular attention to parking in London, and find solutions that won’t further disadvantage vulnerable road users.

Get in touch

Are you being impacted by dockless bike schemes in your borough? Get in touch with us on info@londonvision.org and let us know. Check out the Campaigns page for more information on the work London Vision does around transport in London.

Democracy Volunteers: Special election report

Earlier this morning, Democracy Volunteers launched its report into the voting experiences of blind and partially sighted people in the 2021 London Mayoral Elections.

Democracy Volunteers is a non-profit organisation that observes elections throughout the UK, and abroad, to improve and maintain the quality of democracy. Their mission is to improve the quality of democratic elections, by advising those who legislate for, administer and oversee elections, to enhance them for the benefit of voters.

In 2021, Democracy Volunteers conducted research into experiences of voting for blind and partially sighted voters in London. The research assessed the suitability of current voting procedures for blind and partially sighted people who vote in London.

The research objective was to find out what kinds of voting aids would help blind and partially sighted voters to vote independently. Another objective was to make recommendations on how the voting process can be improved for blind and partially sighted voters in the future.

London Vision worked with Democracy Volunteers to shape a survey to record the experiences of blind and partially sighted voters in London. London Vision also facilitated a focus group with the London Sight Loss Council to help the report authors understand voter experiences, and the kinds of improvements that could help facilitate independent and private voting.

The report offered five key recommendations for improving voter experiences:

  1. Staff should undergo specific and detailed training of how to assist blind and partially sighted voters in the polling station.
  2. The Tactile Voting Device and Large Print Ballot Paper should both be located on the polling staffs’ desk so blind and partially sighted voters are made aware of their presence, and these should be proactively offered to voters when appropriate.
  3. Lighting conditions in polling booths must improve and be consistently above the 100 LUX minimum to assure defined perception of detail for voters to cast their vote. We recommend councils check lighting levels in proposed polling stations as part of their regular reviews of polling places, generally conducted before every major election.
  4. Large Print ballot papers should also be displayed in disabled access polling booths as well as under Recommendation 2.
  5. Public pilot trials should be conducted to assess the effectiveness of a range of ameliorations such as increased lighting, large print ballot papers in polling booths, telephone services to aid voting and wider use of magnifying glasses already placed in polling booths.

To read the full report, please click here.

 

The joy of listening to the spoken word

In 1976 I accessed RNIB’s Talking Book service and Calibre books for the very first time, and I’ve never really stopped listening since then. I usually manage at least one book per week, but a good week can see me listening to three books.

My career as a rehab worker and now at London Vision means I’ve spoken to over 2000 thousand people with sight loss and, I’ve always tried to get people enthused about the joy of listening to books. Listening to books is different to reading and if you have never done it before it does take a little practise and patience.

So, below you’ll find some top tips on how to make the most of your listening experience along with details of how to access different reading services. If you would like to learn more why not come along to one of London Vision’s All Things Reading sessions where we explore the topic with colleagues from RNIB.

My top tips for listening to audio books:

  • If you have been a keen reader of print, it’s very different to listen and you will need to be patient. Listen in short bursts, try a different genre of material or perhaps something very familiar. If you find the pace a little slow you may be able to increase the speed of the reading.
  • If you have never been much of a print reader you may well enjoy audio books as they are such a different experience, so give them a try
  • You might find completing simple household tasks whilst listening helps you focus on the audio.
  • Even the most exciting book can lull you to sleep! Set a sleep timer so the player switches itself off and you don’t have to search too far back for your place.
  • Set bookmarks so you can return to your last reading position. Bookmarks are also great for students studying texts.
  • Jump back a few minutes each time you start listening to remind yourself where you are and what’s been going on.
  • Listening with a partner or friend can be an enjoyable way to get through a book.

If you struggle to hear what’s being read to you

You might try headphones. Or if you are a hearing aid user it may be possible to connect your aid directly to the talking book via Bluetooth. Other ways include using loop systems or listening devices.

Get advice from your local audiology department on best listening options, or your sensory team may also be able to advise you.

Where to get talking books and how to listen

Your local library is a great place to start! Most likely you will be able to borrow books on CD or download books to your computer, tablet or phone from their collection. If there is a charge for these services, then being registered blind or partially sighted usually exempts you.

Local libraries can loan you e-books which you can read in very large text or through synthetic speech. If you can’t get out and want books on CD or in large print, ask about your library’s home delivery service – sometimes CDs and large print books can be delivered to you by volunteers. It’s also a great way to have a regular visitor as your books are dropped off and collected.

RNIB Reading Services

The Royal National Institute for the Blind has probably the largest collection of free to use spoken word materials in the UK, along with e-books and books and magazines in Braille. RNIB’s helpline team will walk you through how to join the service and you can phone them to place orders for books on 0303 123 9999 or email helpline@rnib.org.uk. For detailed information on RNIB reading services follow this link.

Books can be sent free in the post, on CD or memory stick. RNIB sell players or you may be eligible for a player from British Wireless for the Blind (BWFB). RNIB also provides newspaper and magazine content. If you are a student or teacher, explore RNIB Book share for textbooks and educational materials .

RNIB services  are available to download and stream  so you can listen on your phone or computer. The best way do this  is via the Dolphin Easy Reader App which we will explore in more detail below.

Calibre Audio book library

For many years Calibre has been providing audio books for blind and partially sighted people for free. Books are available on audio stick, for downloading and playing through apps like Dolphin Easy Reader or streaming direct from Calibre’s website. Follow this link for full details of how to listen.

Other sources of spoken word materials

  • Seeing ear providing books for people unable to read print
  • Librivox free public domain volunteer read audio books
  • National listening library: postal and internet audio books

Commercial spoken word service

All the above services do have ae certain number of audio books that are free of charge. If you are choosing a book to listen to from Apple Books or Google Play ensure you are purchasing the correct format as it’s very easy to buy electronic texts instead of audio books.

Dolphin Easy Reader

This app for Apple, android and PC allows access to a range of reading materials and specialist libraries in audio and e-pub formats. To add a library from the list, open the manage library tab once you’ve downloaded the easy reader app and set up a Dolphin easy reader account.

Both Calibre and RNIB reading services  can be accessed via Dolphin Easy Reader app. As well as allowing you to access spoken word content from around the world, the app has features which makes the reading of e-pub books simpler by highlighting texts as it reads or through the use of synthetic speech.

For students, the app has features that allow you bookmark and clip sections of text and audio. At London Vision’s regular Managing Sight Loss assistive technology lunchtime drop we explain how to make the best of the app.

Visit this page for details of upcoming Managing Sight Loss events.

Smart speakers

Alexa and Google smart speakers allow you to listen to paid for books.  If you have Alexa, ask what is free on Audible and you will be able to choose from four books a month. Both Amazon Alex and Google smart speakers allow you to listen to short snippets for free, sometimes up to 30 minutes.

Activate by saying: “Alexa read me Wuthering Heights”, or say: “OK Google read Wuthering Heights”. Kindle and Audible are Amazon services. Alexa will allow you to purchase audible books, but be cautious: listen to a minute or two of a book before purchase as it’s easy to buy books with a similar title. If you want a Google book then it’s a case of visiting the Google Play store. If you are using Audible, then it can be cheaper to buy a number of credits as opposed to subscribing monthly.

Controlling the volume, jump forward or backwards with a book and setting sleep timers on a smart speaker is very straightforward and makes for a positive reading experience.

Coming soon on Alexa

Very soon RNIB reading services will be available on Alexa. We have tested this service at London Vision and it works well. Once set up you will simply be able to enter the talking book library and select books to listen to. You will need to be a member of RNIB’s library service

In Your Pocket

In Your Pocket is a voice activated system based on a Samsung phone. Using only your voice you can choose and listen to books from the RNIB Reading services, newsagents and podcasts. Find out more about the RNIB reading services here or from the In Your Pocket website.

RealSam, which produces In Your Pocket also have a skill for both the Amazon Alexa and Google smart speaker. RealSam is subscription based and provides access to Calibre books, Torch Trust materials and Libravox. For more information on how to use the RealSam smart speaker and subscription, read this London Vision review. 

Jonathan Ward, London Vision Development Manager

 

London Sight Loss Council – June highlights

What’s been going on?

The London Sight Loss Council (LSLC) has been working on several different projects and events throughout June 2021.

National Volunteers’ Week

The month started with Volunteers’ Week, from the 1st to 7th June. London Sight Loss Council member Charmaine Ashpole shared her own volunteering story, at the start of National Volunteers’ Week. It explored how she came to volunteering after becoming disabled in 2018. You can find it here.

The London Sight Loss Council hosted a Meet the London Sight Loss Council event on 7th June. The event was a great opportunity to learn more about the LSLC. It was a chance to meet the volunteers who make up the Council, learn more about their work so far, and about how they intend to advocate on behalf of Londoners who are blind or partially sighted.

The LSLC welcomed 13 attendees to the event. Participants asked questions of the LSLC, shared their own views on issues impacting blind and partially sighted Londoners, and contributed many ideas on how the LSLC could engage with stakeholders in the capital. Topics discussed ranged from the shared lived experience and challenges pre and post COVID to how the LSLC could engage with Londoners locally who are blind or partially sighted.

Since the group’s inception in January members have been attending local meetings/forums/events or sitting on steering and lobby groups. The LSLC has been developing and building networks with decision makers and influencers across the capital.

The LSLC members are keen to engage more to help develop and shape the work of the council to effect positive change for Londoners who are blind or partially sighted.  You can find out about the members of the London Sight Loss Council here. If you would like to get in touch with the LSLC members, email: info@londonvision.org

 

London Sight Loss Council: open letter on rental e-scooter trials

The LSLC drafted an open letter to TFL and e-scooter operators in response to the rental e-scooter trials that began at the beginning of June. This letter outlines the concerns of people who are blind or partially sighted about the trials in London, and recommendations for improving the trials’ safety. The London Sight Loss Council met on 23 June and invited the e-scooter trial operators, Transport for London, and a Police Sergeant representative from the Cycle Safety Team of the Metropolitan Police to attend and give feedback on the letter. The LSLC hopes that continuing engagement with operators, TfL and Councils will help push for the integration of more safety features that can keep pedestrians safe, as well as riders.

Additionally, London Sight Loss Council member Haren Thillainathan was interviewed by the SW Londoner about the ongoing rental trials. You can find the article here: https://bit.ly/3gwcJJs

Cash acceptance reinstated across TfL network

When the pandemic struck in 2020, Transport for London stopped accepting cash at around 70 per cent of London Underground stations, most DLR stations, and all London Overground, TfL Rail and Emirates Air Line ticket offices.

These changes were implemented to protect staff and customers from handling cash, whilst also managing social distancing by reducing queuing and congregating at ticket machines and ticket offices.

However, this change created additional barriers for blind and partially sighted passengers, in some cases preventing independent travel.

London Vision held a consultation with 35 blind and partially sighted passengers in December 2020 to gather views and opinions on the change. You can read more about the consultation here.

Official response

London Vision submitted an official response to TfL detailing how the proposed changes to make the network permanently cashless will negatively impact passengers with sight loss.

We shared the consultation responses with TfL, and in early 2021 TfL said that it would pause the move to make more stations cashless.

TfL response and statement

TfL continued to monitor the arrangements closely, and commissioned the independent research agency, 2CV, to explore how cash is used in wider society and on the transport network.

The research focussed specifically on groups of customers with protected characteristics and people on low incomes. The results of this research can be read here.

 

TfL shared with London Vision the following statement: –

“Having carefully considered this research, the public health situation and the feedback that you and other stakeholders have helpfully provided, we plan to start reinstating cash acceptance from today at those stations on the Tube and the DLR where it was removed for pandemic-related reasons. The process of reinstating cash at all affected stations is likely to take a few weeks, and we will update you on our progress by 21 July. On the DLR, cash will be accepted at every station where it was accepted before the pandemic, but the number of available machines at each station may vary due to reliability issues.

 

“We also plan to reinstate cash where it was removed from ticket offices on London Overground, TfL Rail and the Emirates Air Line.

 

“The only exceptions to cash reinstatement on the Tube network are Finsbury Park and Tottenham Hale, which are temporarily not accepting cash due to redevelopment work, and Canary Wharf, where the ticket machines are already cashless. There are Oyster Ticket Stops nearby these stations for those customers who need to use cash. There are also some DLR stations where cash has not been accepted since before the pandemic. These are Bow Church, Devons Road, South Quay, Crossharbour, Westferry, Canary Wharf, Limehouse and All Saints.

 

“Separately to this, we have a requirement to replace ticket machines specifically on the DLR, as they are ageing and becoming unfit for purpose. We will keep you updated on the timeframes for this work and would, of course, engage with you on any proposals that affect cash acceptance on the DLR.

 

“It is clear, from both the research and the valuable feedback we have received throughout engagement with a number of stakeholders, that any further, future changes to cash acceptance would need to be carefully considered, including considering the impact on those customers for whom cash remains vital in allowing them to use our services.

 

“At the same time, it is widely accepted that there is a clear trend in society towards less cash use, which we have seen borne out in the steadily decreasing numbers of people paying to travel on our network with cash over recent years. We also received very few customer comments or complaints during the spell of temporary cashless operation.

 

“We will therefore continue to monitor customer trends, alongside other considerations including local requirements and our financial situation, to ensure we continue to strike the right balance in the future”.

Continuing engagement

London Vision would like to thank everyone who participated in the consultation and took the time to email and call with your views. We are sure you are delighted with this news.

However, considering TfL’s statement, it is very important to share when you have been compromised, or when a service is not meeting your needs.

It is important that complaints and problems are recorded to ensure that TfL services are fit for purpose and that changes made do not negatively impact certain travellers.

We hope you find this update useful.

Thank you from the London Vision team.

If you have been impacted by TfL stations going cashless, please get in touch with Bhavini Makwana on info@londonvision.org