Managing Sight Loss sessions helped me learn new skills, even after seventeen years of being blind
I lost my sight in 2003 and struggled to find all the help and information I then needed to lead a full and independent life, never mind the new skills I would need to learn. It took many months – in fact, nearly two years – to pull together all the information, contacts and support links I needed, not to mention a lot of frustration along the way.
Now, some seventeen years later, I felt fairly well informed but had begun to realise how much had changed, mostly for the better, over the years and that I was out of date. So, I asked to participate in London Vision’s new series of virtual/phone sessions of the Managing Sight Loss course to refresh and learn new skills.
How to access Managing Sight Loss sessions
They are available free on Zoom, accessible for anyone with a computer, smartphone or just a landline. Plus, there is a wide range of dates and time slots for the one-hour sessions – meaning I could get to participate in nearly all of them, and I was so glad I did!
The Managing Sight Loss course offers a variety of distinct sessions, each lasting just over an hour. The sessions focus on different topics and learning new skills such as:
- Registration, benefits and rights
- Sources of support advice and information.
- Blind life hacks for a variety of topics like cleaning, gardening and managing medication.
- Getting around confidently and safely.
- Introduction to technology.
- Sport and leisure.
- How to feel good about yourself.
During each of these friendly, informal, and small group sessions there was time to ask questions, chat with others and share experiences and ideas. I learnt so much, both from the presentations and talks and from the other participants, greatly enjoying the open and helpful atmosphere. Even friends and family are welcome to join in.
On top of all the helpful and informative chat and details you also get a comprehensive summary of every key fact and useful contact as a follow up email after each session. Nothing is left out and you don’t have to rely on memory or hastily written notes.
Whether you are new to sight loss or an old hand like me, participating in these sessions is a great way to improve how you manage your sight loss to the best of your ability.
Written by Robin Davies, West London.
For International Women’s Day 2021, London Vision is celebrating some of the amazing campaigners from the UK working tirelessly in the pursuit of equality and rights.
Dr Amy Kavanagh
Amy is a seasoned and brilliant advocate who campaigns on issues impacting blind and partially sighted people (all in addition to her day job). In 2018 Amy started the Just Ask Don’t Grab campaign in 2018 in response to her frequent experiences of unhelpful grabbing on her daily commute. #JustAskDontGrab encourages people to offer assistance in a respectful, consensual and helpful way. In recognition of her tireless and effective campaigning, Amy was nominated at the 2019 RNIB See Differently Awards as a campaigner of the year.
In addition to all those accolades, Amy is also the landlord of the Staying Inn virtual pub. The Staying Inn started in the first lockdown of 2020, and it’s an accessible, inclusive online space for disabled and non-disabled folk to stay connected during the COVID-19 crisis. Beginning with regular quizzes and crafting sessions, the Staying Inn has now branched out into providing workshops – such as recent diversity and inclusion masterclass.
If you follow London Vision on social media, you’ll have seen us regularly sharing Elin’s My Blurred World blogs and updates. Although she’s only 22, Elin’s been blogging regularly since 2015. She started My Blurred Word blog because she wished she’d had somewhere like it to come to when she was younger and coming to terms with her diagnosis of Retinitis Pigmentosa. She’s passionate about raising awareness about sight and disability equality issues, but she also wants to provide reassurance to her readers in similar situations by gently reminding them that they’re not alone.
Her writing and awareness raising has led to key roles in the sight loss sector – despite her young age, Elin’s been working and volunteering for more than 4 years already. She was a Young Ambassador for VICTA UK in 2018, and she’s now a mentor for LOOK UK and a Global Brand Leader for InvisiYouth Charity. This is all in addition to her day job as social media and communications officer. Elin’s work led to her inclusion on the BBC 100 Women 2020 list, alongside other activists like Alice Wong and Shani Dhanda and other inspiring women (including Prime Ministers!) from around the world.
You may already know Lucy Edwards from her popular YouTube videos (one of which: Blind girl does her own makeup, has had nearly 800 thousand views!), or because she’s a massive star on TikTok, with 1.5million followers! Lucy is a master at making short, funny and informative videos for TikTok, all about living with visual impairment and the ‘blind hacks’ she’s come up with.
Lucy is also a tireless campaigner for a number of charities – she’s run the London Marathon in aid of Guide Dogs for the Blind, been the keynote speaker at the RNIB Summer Gala, become a digital ambassador for Living Paintings, and her work was also recognised by the Lord-Lieutenancy of the West Midlands (where she’s from). This is all in addition to her work as a professional broadcaster – she presents regular reports for the BBC on TV and radio and has an ever-growing portfolio of work.
Holly is another blogger we love, and she’s been writing her Life of a Blind Girl blog since 2015. The blog covers a variety of topics, including Holly’s disability, her experiences at university and some really informative articles about accessibility. Holly is a huge music and theatre fan – she blogs frequently about concerts and events she attends, and this passion led to her co-founding Access for Us in 2019. Access for Us is a non-profit blog that raises awareness around the lack of access of entertainment venues for disabled fans, as well as highlighting the barriers disabled fans face when purchasing disabled access tickets.
Holly has been frequently recognised with awards for her advocacy work around disability issues, and was included on the Shaw Trust Disability Power List in both 2018 and 2019. In addition to this work, Holly splits her time between working as an Assistive Technology Adviser, writing articles for publications and creating content for her own blog. She’s also recently joined the RNIB Connect Radio family and has just started co-hosting the Happy Hour which is a brand-new show dedicated all things sight loss and wellbeing. Make sure you tune in!
It’s World Book Day today! World Book Day is now in its 24th year, and while it was invented to encourage children to read, its core message: “that reading is fun, relevant, accessible, exciting, and has the power to transform lives” has meaning for all ages.
On this day last year, we still had little idea about the impact the pandemic would wreak on our lives. Ongoing lockdowns have transformed society and kept us in our homes. Unable to mix socially, many of us have found escape in the world of books. As Jeanette Winterson said: “Books and doors are the same thing. You open them, and you go through into another world”.
London Vision’s resident bookworm Cathy Low has put together a list of her top reads from the past year, and contributor Sarah Matthews (who used to work in publishing) has kindly also put together a list – including some key titles available in braille.
These are books that have inspired, educated, and helped Cathy and Sarah explore the world and experience new things, all from the comfort of their sofas. In the spirit of new lockdown laws and restrictions, the John Waters quote: “You have to remember that it is impossible to commit a crime while reading a book”, feels quite apt. We hope you’ve enjoyed reading over the past year, and have felt able to broaden your reduced horizons through brilliant literature.
Daphne du Maurier, 1949 (available in braille and audio)
By the author of Rebecca and The Birds, this novel is about a theatrical family and is set in Paris and London.
Girl, Woman, Other
Bernadine Evaristo, 2019 (available in braille and audio)
This book won The Booker Prize in 2019 and is the thought-provoking story of 12 interconnected women.
Sally Rooney, 2018 (available on audio)
This book has recently been adapted for TV and her first novel, Conversations with Friends, is also great and in production at the moment. Normal People is a coming-of-age story about Marianne and Connell set in Ireland.
Maggie O’Farrell, 2020 (available on audio, braille to follow soon)
Winner of the 2020 Women’s Prize. This novel imagines the life of Shakespeare’s wife, Agnes, and the tragic death of their young son. I enjoyed it on audio and am waiting for the braille edition to become available as I want to read it again, all of Maggie’s novels are brilliant.
Death of a Ghost
Marjorie Allingham, 1934 (available on audio)
Golden age crime fiction set in the art world. She was Agatha Christie’s favourite novelist and there are a number of her books in the RNIB audiobook library.
Candice Carty-Williams, 2019 (available on audio)
Winner of the 2020 British Book Best Novel Award. Queenie works for a newspaper and is struggling to get her voice heard. This is the story of her break up with her boyfriend, the realities of life as a Black British woman in today’s society and the importance of friendship.
Ali Smith, 2016 (available in braille and audio)
The first in Ali Smith’s Seasonal Quartet this book is a contemporary novel which is set around a central friendship and the aftermath of the Brexit vote. Smith also weaves in the story of Pauline Boty, a forgotten pop artist from the 1960s. She also writes beautifully about nature. I have read Autumn, Winter and Spring and am waiting for Summer to come out in braille.
The Prime of Miss Jean Brodie
Muriel Spark, 1961 (available in braille and audio)
A novella set in a girl’s school in Edinburgh, just before World War II.
Evelyn Waugh, 1930 (available in braille and audio)
A brilliant satire of the 1920s Jazz Age.
Douglas Stuart, 2020 (available through RNIB bookshare and on audio)
This won the Booker prize in 2020. Absolutely fantastic despite the challenging subject matter.
Black and British: a forgotten history / Natives
Black and British by David Olusoga, 2016, and Natives by Akala, 2018 (both available through RNIB bookshare and on audio)
I read these over the summer lockdown and both completely opened my eyes to hitherto unknown parts of British history and culture.
Kelleigh Greenberg-Jephcott, 2018 (available on audio)
All about Truman Capote and the circle of society women he cultivated relationships with and eventually betrayed. Brilliant storytelling, and all of the characters are very well drawn.
A gentleman in Moscow
Amor Towles, 2017 (available through RNIB bookshare and on audio)
Admittedly a bit slow at the start but a great story and characters who really stay with you.
All the light we cannot see
Anthony Doerr, 2014 (available through RNIB bookshare and on audio)
Set in Belgium during WW2. The central character is a young blind woman.
I could go on!
It started with occasional double vision as I approached the end of my teens in the early sixties. After a round of visits to opticians and eye clinics my mother took me to see an eye specialist at a London hospital. I tried not to grimace as the eye specialist ground his ophthalmoscope ever deeper into my eye sockets. Mr Trevor Roper, the specialist, applied drops to my both my eyes, and we waited 20 minutes for them to dilate sufficiently.
After examining my dilated pupils, he explained that my mother and her family’s eye history were the source of my problem. I knew my maternal great grandmother was totally blind and that one of my aunts was born with only one eye, but my mother could see fine, so why me? Patiently he explained that this inherited disease, then called Dominant Macular Cysts, was very rare, little was understood about it and there was no treatment or cure. His reassurance that it progressed slowly, seldom leading to total sight loss was far from comforting, but it did provide me with a good argument with which to convince my dad that a future as an accountant, despite how good at maths I was, was not the best choice. In that sense it was a bit of a result!
Moving forward with my life
The double vision ended after a week, then two years later, reaching 21, I abandoned my accountancy articles and sought a more interesting and exciting career. The mid sixties were good times in London with plenty of career opportunities and prospects. My worries about future eye problems slid into the background as my eyesight remained undiminished in any way. In fact, it stayed that way for many years.
During those years I climbed the corporate ladder, bought my home, enjoyed a full social, cultural, and sporting life, travelled extensively for work and leisure with hardly a thought about my diagnosis. My annual visits to the eye clinic regularly confirmed that both eyes were fine and that my Best Disease, as it is now known, was stable. Such an inappropriate name for such a disease I have always thought, shouldn’t it be called Worst Disease? The name comes from mutations in the BEST1 gene, which produces the protein Bestrophin-1, but who the hell named them?
Changes in vision
In the 1990s things started to change. I was in my fifties and had started to wear spectacles for reading and figure work. However, my vision continued to relentlessly deteriorate. My central vision almost disappeared and then as my peripheral vision faltered and began to fail, work became impossible. Nearing my sixtieth birthday I finally had to accept my situation and take early retirement.
So, at 60 I found myself, due to a rare inherited disease, entering Shakespeare’s sixth age still with my hair and teeth, spectacles on nose and without eyes! Six decades of living in the light ending in a permanent black cloud and realisation that this was my new role and I had to learn the part.
Life as a blind person
My new life as a blind person started with being registered as blind, getting my BD8 form (predecessor of the current Certificate of Severe Vision Impairment forms), from Moorfields and then registering with my local council. The shock and emotional turmoil of that period and those events still resonate with me and help me relate to those currently facing this life situation.
Now, almost twenty years later, I can look back with considerable surprise and satisfaction at the life that grew out of that personal crisis. A new life only possible with the support of my long-term partner, who stood by me throughout, and the multitude of amazing and supportive organisations, charities and official bodies set up to assist our community. Impaired or lost sight cannot be replaced, but there is so much that can be done to minimise the impact, overcome many of the barriers and provide alternative ways of continuing to live an enjoyable and interesting life. But first you need to want to take up the challenge and make the best of things, in my case make the best of living with Best Disease!
Not wanting to retire yet I got help from my local Job Centre to apply for a course at the Royal National College for the Blind in Hereford to get me to a reasonable level of IT proficiency. That led to a job opportunity with Scope, as they set up a team to provide disability awareness training to commercial companies. I then found a position with City University in the Health and Sciences School as their Business Development Manager, before finally retiring aged 67.
All of this was made possible by the support of my local Rehabilitation Officer and her mobility training, my DLA benefit (Disability Living Allowance), the Access to Work scheme, of receiving a wonderful Guide Dog and so much help from my employers and many volunteers throughout. Plus, the vital and extraordinary advances in technology such as speech software for computers, tablets and smart phones, audio books and now smart speakers and home assistants. Sometimes I feel that the future has arrived already in my voice activated environment!
Retired for ten years now I find my life full, busy with adult learning sessions for drama, singing and creative writing. It is wonderful how much is available if you just research and ask. My local gym makes adjustments to help me exercise and cinemas and theatres provide audio description services for almost every film or show. Museums and galleries have special events for blind and partially sighted guests and theatres provide touch tours to go on stage and even meet the performers: sighted friends fight to join me if my partner is not available!
Would I prefer not to have lost my sight? Of course, but has it been worth making the best of my new life as a blind person? Absolutely!
By Robin Davies
Ford-owned e-scooter company Spin today announces a partnership with London Vision, London’s premier non-profit supporting visually impaired and blind people in London. Through the partnership Spin’s e-scooter riders will be educated on safe riding and etiquette to help protect vulnerable pedestrian groups in the areas Spin operates.
London Vision will provide Spin with a framework of training materials that it will incorporate into a disability awareness safety module that can be accessed online, in-app and via in-person training events when lockdown restrictions ease.
After completing the disability awareness safety module, Spin riders will be able to appreciate the implications of riding a scooter in the vicinity of a guide dog, understand what the different lengths and styles of cane represent, and know how to interact with blind and partially sighted people to support and respect their independence in the urban environment.
Commenting on the partnership, Steve Pyer, UK Country Manager at Spin said, “At Spin, safety is our number one priority. We are always looking for new ways to educate our riders on e-scooter safety and rider etiquette. Partnering with experts like London Vision is a significant step in creating a better, safer, and less fearful relationship between e-scooter riders and blind and partially sighted pedestrians.”
Comment from London Vision spokesperson
Bhavini Makwana, London Vision’s Engagement Manager, said: “We are pleased to be working with Spin to advise on training modules that will help to keep blind and partially sighted pedestrians safer. Our partnership with Spin demonstrates Spin’s awareness of the legitimate fears of blind and partially sighted pedestrians and a willingness to ensure that its riders are well trained and as safe as possible”.
To ensure that those who are blind or visually impaired can identity the e-scooter, all of Spin’s e-scooters are equipped with labels in braille, which also include contact information for Spin’s customer support team. Riders can also use the bell on the e-scooter to alert pedestrians that an e-scooter is approaching.
Headquartered in San Francisco, California, Spin is one of the leading micromobility companies and a subsidiary of Ford Motor Company. Spin has been recognized for launching the first stationless mobility program in the United States and was instrumental in crafting the world’s first mobility permit system. As a trusted and reliable partner, Spin currently operates electric scooters in many cities and universities in the U.S., UK and Germany. Spin consists of a diverse team of experienced professionals from government and private sectors, and the transportation advocacy world, all of whom are committed to fulfilling the company’s mission — giving people the freedom to move and bringing people, communities, and their urban environment closer together. https://www.spin.app/
About London Vision
Our vision is a society and capital city where blind and partially sighted people can participate fully.
Our mission is to make London more equal and inclusive so that people who are blind and partially sighted can take advantage of all that the UK’s capital city has to offer.
Rachel Nulty / Luke Proctor
+44 (0) 208 408 800
My name is Bhavini Makwana and I am London Vision’s Engagement Manager, working to campaign for equal access and opportunities for blind and partially sighted people in London. Along with this role, I am a trustee for Transport for All, and Chair for both the BAME Vision Committee and the Retina UK London Peer Support Group. In all these roles, I tackle inequalities, increase awareness of sight loss amongst stakeholders and reach out to community members with sight loss who sometimes have limited access to support and advice. I’m driven by passion and determination, and by my own lived experience of being blind and facing challenges in my day to day life as a result.
When I was 17, I was diagnosed with Retinitis Pigmentosa (RP). Being told I would go blind to RP was a devastating blow to my 17-year-old self. Shy, naïve, and introverted, it completely broke me. Without real understanding of my diagnosis nor any explanation to my parents and family, we struggled for years to comprehend what my future would hold. As a result, I was a bit of a late bloomer when it came to rites of passage and attending social events: first going to night clubs in my late 20s, my social circle whom I call real friends blossomed in my mid-30s.
I finally received rehabilitation support in my early 30s, and soon stumbled upon the charity Retina UK. Through Retina UK I learned how to interact with others, gained peer support, underwent mobility cane training and more. Before my first contact with Retina UK, I had spent a decade at home with my children. My language and experience was based around CBeebies and Nickelodeon! Retina UK helped me gain some confidence, and begin the transition to working.
Volunteering and employment
I began volunteering on Retina UK’s helpline and this quickly snowballed: I became a Telephone Facilitator for RNIB and an ECLO Support at Moorfields via The Thomas Pocklington Trust volunteering scheme. Volunteering helped me gain key skills and, crucially, confidence. I found a meaningful purpose and I knew I was making a difference. It was refreshing and empowering.
I then joined East London Vision as their Activities Co-ordinator, arranging outings, activities speakers and workshops for seven local societies. Working with East London Vision enhanced my travelling skills, teaching me about schemes like Turn up and Go, the CEA Cinemas and Exhibition card, audio described theatre performances and touch tours. My world opened up to Access to Work, a scheme providing support to disabled employees and employers to retain work.
Elements of this role included highlighting accessibility and advocating for blind and partially sighted people. This led to my current role as the Engagement Manager for London Vision; in this role I campaign for equal access to services for people with sight loss, as well and engaging with stake holders and advocating and influencing.
I found that my experience volunteering was invaluable for getting into these roles. There are many employment schemes available, and specialised support for blind and partially sighted people, but volunteering allows you to gain skills and knowledge in something you are interested in. Then you can transfer any of these skills into employment – and grab any unusual opportunities that come up. For example, when I was first asked to present a radio show I laughed, put up barriers and hesitated. But one of the most important things that volunteering, and my life experience has taught me is that I should take every opportunity that comes my way and being scared at first can be a good thing. So, I grabbed that radio opportunity, and I’ve been presenting my own radio show (Saturday at 10am on BHF Radio) ever since!
My early diagnosis was in isolation but now I’m more confident living with my RP, as I know and can find out information and access support in case my sight loss decreases further. I now work with and am connected to many other blind and partially sighted people, and I’m always learning new things from my colleagues. I hope that my story has shown that while living with RP is challenging, but with the right support and adaptations, anything is achievable!
Barnet Borough Sight Impaired group (BBSI) is a visually impaired people’s organisation based in Barnet. It runs meetings and events year-round for blind and partially sighted people living in and around the borough. The meetings and events have a variety of themes – from regular general meetings about group business, to exercise classes, discussion groups, raffles, musical events and talks. Members can join the group on up to three outings spread throughout the year, these might be canal trips, visits to stately homes, communal dinners or trips to the theatre.
Lockdown in March
Understandably, the lockdown in March 2020 meant that we had to put all these regular activities on hold. Unable to hold in-person meetings, we made the bold step towards the virtual world, embracing the Zoom video conferencing platform for our first online monthly meeting, with success! Trying as much as possible to replicate the format of our in-person meetings, we divide the meeting into three sections; in the first part members are split into breakout rooms for discussions and in the second for gentle exercises. Then, all members are brought together for a group activity.
Despite the restrictions of Zoom, we have managed to continue with many of the same sorts of activities we would do in meetings normally over Zoom. We have featured Zoom talks, musical performances and musical afternoons, creative sessions – where members might recite their poems or skits, or request that they be read on their behalf – and managed to include time for notices and the fond farewell.
The fact that Zoom has a provision for landline connection has meant that members without access to laptops or smartphones have been able to join these sessions. However, some members have still found it too difficult to join the virtual meetings, so BBSI has made contact with the membership on a monthly basis by phoning them.
When the pandemic ends, BBSI hopes to return to physical meetings and outings, but we do understand that some members may be reluctant to attend. In anticipation of the post pandemic era we are seriously considering how to accommodate meetings with both physical and virtual attendance simultaneously. While the current switch to virtual meetings has unfortunately meant that some members have been excluded, it’s also enabled some members to attend more events than they might have normally. We are keen to make sure that people who may prefer to continue attending virtually are able to do so. However, we appreciate that it may take some time and additional funds for BBSI to achieve this.
If you would like to learn more about Barnet Borough Sight Impaired group, you can visit our website or Facebook page. We have continued publishing our newsletter during the pandemic in large print, email and audio versions, please get in touch if you would like to receive it in your preferred format.
Michael Henriques, vice chair of BBSI
Get in touch with Barnet Borough Sight Impaired group
Telephone: 020 8200 5462
London now has a Sight Loss Council to advocate the needs of blind and partially sighted people and influence positive change in the capital.
The announcement comes after the successful appointment of 14 members, all of whom are visually impaired themselves.
Facilitated by London Vision with funding from Thomas Pocklington Trust (TPT) and the Vision Foundation, it forms part of the national network of Sight Loss Councils established by TPT.
Cathy Low, CEO of London Vision said: “The formation of a London Sight Loss Council has generated a lot of interest from applicants across the capital. Sight Loss Councils promote engagement and self-advocacy, and can effect real change – as demonstrated already with Sight Loss Councils’ work across the country.
“The 14 members come from a range of locations and backgrounds across the capital. London is an incredibly diverse city and this diversity is reflected in our members to ensure a variety of views and experiences is represented.”
Members of the new London Sight Loss Council are:
- Charmaine Ashpole
- Davinder Kullar
- Haren Thillainathan
- Jonathon Abro
- Jurgen Donaldson
- Lucy Williams
- Mariza Jurgens
- Martia Bevan
- Rachel Bowden Waterson
- Renu Walia
- Selina Mills
- Steven Rattray
- Steve Reed
- Vicky Blencowe
One of the new members of the council, Jurgen Donaldson, said: “Sight Loss Councils have been supporting the visually impaired community across the UK since 2016. I am excited to be part of launching this new London Sight Loss Council and to be part of improving the day-to-day lives of people in our community across this great city”.
The first LSLC meeting will take place virtually in January 2021 where members will establish key priority areas for focus, using their knowledge and lived experience.
Cathy added: “The London Sight Loss Council will complement the network of local sight loss organisations and strive to collaborate and form partnerships across the capital.”
For further information or images please contact: Rosalind Duignan-Pearson, London Vision, email@example.com 0203 761 3651 or 07974 578 637.
About Sight Loss Councils
London Sight Loss Council, led by blind and partially sighted volunteers, advocates the needs of blind and partially sighted people and influences positive change in the capital.
Facilitated by London Vision with funding from Thomas Pocklington Trust (TPT) and Vision Foundation, it forms part of the national network of Sight Loss Councils (SLC) established by TPT.
SLCs are currently operating in Birmingham, Black Country, Bristol, Gloucestershire, Greater Manchester, Merseyside, Tyne & Wear and Bedfordshire. Each SLC is made up of around 10-12 blind and partially sighted members who meet monthly to discuss accessibility issues and plan projects in their regions under the six priority themes of education, employment, technology, health and social care, transport, sport and leisure. Over the next year Thomas Pocklington Trust will be extending its SLCs across the country. www.sightlosscouncils.org.uk
About London Vision
Our vision is a society and capital city where blind and partially sighted people can participate fully.
Our mission is to make London more equal and inclusive so that people who are blind and partially sighted can advantage of all that the UK’s capital city has to offer.
About the Vision Foundation
The Vision Foundation transforms the lives of people facing or living with sight loss by funding projects that inform, empower and include.
Being blind or partially sighted shouldn’t mean you’re left out, isolated or held back. But too many people are. That’s why we amplify the voices of blind and partially sighted people, and inspire others to advocate and take action.
Our mission is to make London a shining example of a sight loss aware city.
When I suddenly lost my sight in my mid-thirties, I went through a long period of adjustment and grief. I slowly managed to accept my new life and work out what I needed to do to move forward. I could see straight away that there were lots of new skills I needed to master – including using a white cane and assistive technology. I had never owned an iPhone before and had to dive straight in, using the built-in voiceover feature that reads out text. But it was incredibly difficult to rethink the way I used technology and I often found myself chucking my phone down in frustration. I realised that I needed time away from technology and this is when the tactile nature of learning braille became appealing.
First steps towards learning braille
I started by joining a local braille class, in 2014 when my son was still a toddler, which met at an adult learning centre down the road from me. I started following the RNIB’s Fingerprint course in class and at home and slowly learnt the alphabet. I was put in touch with Clear Vision library, who sent me my first braille books to read with my son. I clearly remember reading that first little board book with him. It was called That’s Not My Monster and it had just a couple of lines of Uncontracted [Grade 1] braille on each page. Sitting and reading to him from the book and experiencing his reactions was a magical moment.
When my son started learning to read, I really enjoyed helping him each day after school. It was made easier as his teacher was able to get braille versions of his reading scheme books from Clear Vision library. It made me determined to learn Contracted [Grade 2] braille so I would be able to read faster. From then on, I became really fascinated by the braille code and tried to practise a little every day.
Braille and independent reading
I completed the Fingerprint course in about two years, which meant that I could now read novels to myself again. The first novel I read in braille was Murder on the Orient Express by Agatha Christie. It was slow going but I found that reading braille was relaxing and the closest I could get to the experience of reading a print book, something I missed so much. It’s also a great way to send me off to sleep at night. I often wake in the night to find a book laying open on my lap. That is another wonderful thing about braille, you can read in the dark so you don’t bother your partner!
It also comes in handy when trying to get a restless child off to sleep. I read to our son in the dark at bedtime most nights from braille books and it is one of the highlights of my day. We started with picture books and then as he got older, we moved on to chapter books; we have recently read the first two Harry Potter books. We are currently reading a hilarious book by Jo Simmons called I Swapped My Brother on the Internet.
In the summer I enjoy reading my braille books out in the garden or on the beach and I love that I can listen to the conversations going on nearby and hear my son playing football whilst I read. It is so good to do something without having headphones in my ears for a while and allows me to appreciate the world around me.
Braille and new technology
Over lockdown last year the RNIB had to close their library, which led me to embrace new technology and learn to read braille electronically. It was a daunting prospect. I got an Orbit Reader 20 refreshable braille display and it has been a brilliant piece of tech to use. I refer to it as my ‘braille Kindle’. It is about the size of a standard hardback and came with an SD card full of hundreds of books, which got me started.
I recently attended some great Zoom events by The Braillists Foundation, that featured lots of tips on how to use the Orbit Reader including how it could be used to read subtitles from foreign language films on your phone if you are learning a new language which I thought was inspired! The next challenge I have set myself is to learn how to connect the Orbit Reader to my iPhone so I can read e-books. This will open up a whole new world of books for me. Having choice is so important and a luxury that I took for granted in the past. It is brilliant that I can now read in a variety of formats; I always have a couple of audiobooks on the go alongside a print braille book and an electronic braille book.
Using braille in my everyday life
It is funny how situations can pop up that unexpectedly lend themselves to braille. When my sister got married in 2019, she asked if I would like to do a short reading at the service. I really wanted to be part of her big day but was very nervous about the idea of speaking in front of a large group. I knew I wouldn’t be able to memorise the passage so I typed it out into braille and practised it over and over, I was so pleased to be able to read it on the day.
Learning braille as an adult has been a really fulfilling experience for me and opened up new opportunities. I now volunteer for Clear Vision, transcribing children’s books into braille by typing onto transparent plastic sheets for them to insert into books. It is a big challenge and I make lots of mistakes but I really enjoy helping them in this way and keep learning and improving my braille skills.
Lockdown and learning braille
I read recently that it is estimated that less than 8 per cent of blind people use braille , however, I think that if more opportunities were out there for people to try it this number would rise. My braille group is a wonderful thing to be part of and is a great place to meet other blind people. We helped each other over the lockdowns this year, staying in touch with a weekly Zoom call and raising each other’s spirits. We all learn braille to different levels but we all appreciate that learning the basics of braille has helped us lots in everyday life: from labelling items in the kitchen, to being able to read braille on medication or label important documents.
Barriers to learning braille
One of the most often mentioned barriers to learning braille is lack of access to learning materials and teaching, but another key issue that several people in my braille group mentioned is lack of sensitivity in your fingers. Some people have nerve damage or take medication that can affect their touch, which makes learning braille much harder. We all agreed that it was a special moment when we read our first word, first sentence and realised that reading independently could be possible again. One friend expressed it as “it gives you back an element of your sight; it’s sight through fingertips”.
For me, it is all about having the tools to choose how I want to do things in my life. As blind people we spend our time constantly problem solving, and it is great to have braille as an option to call on when I need it.
I’ve a long and eventful history of negotiating steps and stairs. One of my earliest memories is of the world revolving as a fell backwards down the stairs in our family home at the age of two. That was broken nose number one!
Fast forward to adulthood, and failure to pull up my trousers properly resulted in a fast slide down my stairs as a new homeowner. Nose intact, but pride somewhat damaged. More recently I wrote about the sensation of stomach rising rapidly to mouth as I missed steps when running in lockdown.
What prompted me to write however was the impact wearing a face mask had on my ability to walk down a set of steps into Victoria Station. I have a weird macula condition which means I lack central vision – no detail – and I need to look sideways at everything. Two steps down and for the first time in my life I felt the impact of vertigo. The steps appeared to slide away into nothingness. Weird. Then logic kicked in the mask is blocking a useful part of my vision. Then I think: whose idea to install silver stairs across the TFL network anyway?
Thoughts on successful stair navigation
It’s natural to be a little scared of stairs when you have sight loss. For most people, going up is less frightening than coming down. More than one sight condition can result in stairs looking like a slide as you stand at the top.
Good lighting and contrasting step edges can allow better depth perception. Get advice before painting step edges as some paints can become slippery and beware the use of sticky tape to highlight step edges. You can’t beat a good handrail and if it contrasts so you can see to find it all the better.
In modern buildings and environments handrails should extend above and below the flight of steps to denote top and bottom. To touch or not in COVID times? TFL and transport providers are working hard to ensure all handrails are regularly sanitised. Some people with sight loss are opting for gloves. Some disposable others washable on return home.
Stair climbing for fitness
Back to the stairs. If you are physically fit then walking up and down stairs in a usual gait and rhythm is by far the best way. You might like to find the top or bottom step with your foot before you begin. Don’t forget the handrail! In Tai Chi and martial arts students are taught a to foster a connection with the ground and the same is true in mindfulness and yoga. Try feeling the connection between foot and step as you descend. Think about putting your weight through each step when descending or ascending.
If someone is guiding you towards stairs – make sure they tell you which way the stairs are going, up or down! Obvious, but people do forget. A little information about the steps can be useful, such as whether they’ve got backs or are open. Encourage the guide to pause briefly at the top and bottom to indicate you’ve reached the end of the stairs. It also works well if the guide allows you to walk next to the stair rail.
Mobility aids and stairs
Canes and walking sticks also have their place when negotiating steps with little or no vision. If you are finding you need to rely on your cane or walking stick to determine the depth of steps then it’s worth chatting to a mobility specialist. You need the right tool for the job. There are techniques for detecting stairs up and down and identifying top and bottom. A long cane will allow you to detect the corduroy tactile paving 50cm from the top or bottom of stairs. Long canes are particularly good for detecting the odd step or unexpected kerb.
If you have physical difficulties with walking, Zimmer frames, trollies and other walking aids can help you detect steps and stairs but get some advice on the best aid to meet your need. You can paint your frame white to let people know you have difficulty seeing or attach labels or badges denoting sight loss. Walking sticks need to be measured to meet your need so if you are looking to use a white walking stick then get advice from your rehab worker.
Please get in touch if you have questions regarding stairs, steps or moving around with sight loss. You can contact London Vision on firstname.lastname@example.org or 0203 761 3651.