Lost for words



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Lost for words

"When my sight went so did my favourite conversations."

"Being a bookworm, I was distraught when I lost the ability to read. I missed book club and all the lively discussions."

Sue Scott, 65

Contents


  • Acknowledgements

  • Foreword by Sue Townsend

  • Imagine a world without information

  • Personal information

  • Daily routine

  • Keeping up with the world

  • Reading for pleasure

  • Conclusion

  • End notes

Authors: Andrew Kaye and Julianne Marriott



Acknowledgements


We would like to thank Sue Townsend for her foreword and everyone who shared their personal stories that make up this report.

Their views do not necessarily reflect the views of RNIB but they are strongly held and can only hint at the difficulties blind and partially sighted people experience in their everyday lives. We would also like to thank the following RNIB staff: Fazilet Hadi, Steve Winyard, Vicki Cookson, John Godber, Pat Beech, Sylvie Barr, Amy Philips, Joan Longstaff, Hugh Huddy, Deborah Spiers and Rachel Dean. Special thanks to Erin Callaghan without whom this report would not be possible.



Foreword


By Sue Townsend
I fell in love with books when I was eight and a half. I quickly read through the small school library, so I joined the children’s section of our local library and read my way through that – I didn’t care for books with pictures, it was the words I craved.

When I was an adult I didn’t leave the house without a book. I would read in bed until the birds began to sing. One day, after a heavy writing stint I lay down on the sofa with a copy of Simon Gray’s Diaries, I read 17 pages then I went to sleep. When I awoke I couldn’t see. I thought the house was on fire and that the room was filled with dark brown smoke, but there was no smell, no heat, no sound of a fire. I groped my way from room to room before realising that the darkness was inside my head. Those 17 pages were the last words I read, unaided.

I was quite calm on the outside, but inside I was distraught. I craved books, I continued to buy them for a while, then stopped. Instead I listened to words on BBC Radios Four and Five.
Then one day the RNIB Talking Book Service contacted me and lifted me out of the pit of misery and self-pity into which I’d fallen. I went on holiday to Portugal and, in a swimming pool, lay listening to hours of beautifully read books on my little portable CD Player.
I support RNIB’s Talking Book Service because it helped me to realise that it was possible to be “well read” without books. Perhaps we should introduce a new phrase – how does “well listened” sound?

Imagine a world without information


Stop and think about how much you have read this week. Imagine the information that you read to simply get by and to make everyday decisions: your bank statement, the bus timetable, an appointment reminder or the list of ingredients on a packet of food.
Now think for a moment about how much information you’ve glanced at briefly, often in passing. The adverts, the posters, leaflets, the cost of an item, a signpost or a station name.
Then throw in your emails, the article or blog you read online and the websites you browsed. Don't forget the book that you’re enjoying, the magazine you flicked through and the newspapers that you read.
Imagine it piled high above you. Now imagine what you would have done this week if you could no longer read all those words.

What would you lose if you lost your sight?

In the first Lost and Found report (RNIB, 2009) we focused on the devastating experience of losing your sight and exposed the bleak reality of the lack of support and help available. This report continues the journey. It reveals the emotional and practical impact of no longer being able to read print and the isolation, loss and frustration felt.

In this report people speak about their loss of independence and the daily frustrations they face without the information they need. We hear about the difficulty of everyday tasks such as shopping and paying bills. How people feel unsafe and anxious dealing with health services. We learn how cruelly cut off from the world people feel because they can’t read the newspapers or magazines they used to and many describe the heartbreak of no longer being able to read their much loved books.

Making a difference


Is being able to read the information your bank, council or hospital send you too much to ask? Does losing your sight mean you should lose the pleasure of reading a book or the newspaper? We don't think so, the majority of the public agree with us and in many cases the law, such as the Equality Act, does too.
Whether you are a government minister or councillor, chief executive of a local council or a bank, a publisher or librarian or a concerned member of the public you can help. You can ensure the decisions you make include rather than shut out people from the information they need.
We at RNIB, which includes our associate charities such as Action for Blind People and National Talking Newspapers and Magazines (NTNM), help people find their lives again through reading. As well as improving and extending our own services we will continue our work with companies, councils, health providers and publishers to improve theirs. We support people with sight loss to use the law to get the information they need and campaign to change the world where necessary.
Information is power and words unlock the world. If you share our concern and passion to create a more inclusive society please turn the page and meet our story tellers.

How do you read when you lose your sight?

When standard print has become too difficult to read, people use large print or audio and some will learn to read braille. Nowadays more and more people use their computers to read by increasing the size of the text. Others install a computer package which reads out the words on the screen or turns them into braille.

While the nearly two million people with sight loss in the UK can find other ways of reading, they are still missing out on so much information that sighted people take for granted.

Personal information


We rely on written information for the most fundamental tasks. Paying our bills. Finding out how to get somewhere. Knowing how to take medicine so we can overcome ill health.
However, what would happen if you opened up a bill one day to find it blank, with apparently no information on what you owed to the gas company that month? And if the test results sent to you by your GP came back as a white sheet of paper with seemingly no news, how would you react?
This is the depressing reality faced by nearly two million people with significant sight problems. At the very least this is deeply frustrating, leaving people in a position where they are reliant on others to read their private information to them. But not being able to access written information can also have devastating results, impacting on individuals' health and sense of security.

Sarah's story


"Why can't I get personal information about my health with the same independence and confidentiality as a sighted person?"
Like many blind and partially sighted people Sarah struggles to get the NHS to provide her with information she can read. She was told it was not possible to provide the results of her cervical smear test in braille and that a standard print letter would be sent to her instead.
"I was particularly offended by the assumption that I had a carer or someone to read my letter for me. It wasn't the first time I've encountered difficulties."
A month after her test, and after several frustrating phone calls, Sarah finally received her results by email. "A sighted patient would have received the results within a fortnight. Chasing my results was extremely stressful and time consuming.

Sarah cannot believe how far the health service lags behind when it comes to providing important personal information.

"I received congratulations cards in braille from friends when I got married in 2008. Why can't I get information from health services?"

Sarah Bryan, 26, Sheffield



More stories


"The GP sat down and said, 'I've got something very serious to tell you.' She went on to say that I had diabetes. She then gave me a piece of paper and said, 'you can get someone to read this to you at home.' I didn't sleep for days, worrying."

Margaret, 62, Newry, Northern Ireland


"I've had all sorts of issues with my council. They have a self-defeating policy, you have to receive something in print before you can request it in braille. It is completely insane…it completely baffles me. I get my information from Orange, Virgin Media, EDF and Thames Water in braille but not my council. They don't justify it; they just say it's their policy."

David, 25, Walthamstow or NE London


"The Department for Work and Pensions will not give me information in any other format. The choice is either to ignore my post or rely on my housemates to read it, but why should they have to know my personal financial situation?"

Aletea, 23, Aberystwyth


“I’ve been disappointed, angry even, relying on others to read my appointment letters in the past. But I’m not a person who gives up easily. Just the other week I managed to get my hospital appointment letter in braille. It was delightful.”

Denise, 57, Stockton-on-Tees



Some facts and figures

  • Losing your sight means you can become reliant on others to read out your personal information, for example appointment letters or test results from your GP. This can mean a loss of independence and privacy.


  • 44 per cent of people registered as blind or partially sighted have information read out to them (Douglas, Corcoran and Pavey, 2006)

  • Fewer than one in five councils surveyed in England and Wales confirmed that they provide their council tax forms in large print, audio or braille (Callaghan, 2010).

  • Over half (52 per cent) of the general public would be uncomfortable with a neighbour reading out the results of a medical test (TNS-RI Omnibus, 2010).

  • Only five per cent of blind and partially sighted people were asked by NHS staff what format they required when they were given information about their health (Dr Foster Intelligence, 2009).

  • Nearly three-quarters (74 and 72 per cent) of blind and partially sighted people cannot read the information provided by their hospital or their GP (Dr Foster Intelligence, 2009).


Change is needed


We need a revolution in the way the NHS and local councils make information available to blind and partially sighted people. First, the NHS and local councils must comply with the Equality Act – in force in Great Britain from October 2010. Public authorities such as NHS bodies and councils will need to make reasonable adjustments, ensuring blind and partially sighted people are provided with information in their preferred reading format.
We must also see a dramatic change in culture so that public services enable rather than disempower blind and partially sighted people when they are seeking to access personal information.

A better approach to health information

RNIB's "Losing Patients" campaign is about empowering blind and partially sighted people to demand accessible information from the NHS. It has brought 500 people with sight problems together with NHS managers and healthcare professionals to raise awareness of the importance of accessible health information. At the launch of the Losing Patients campaign on 19 July 2009 the Rt Hon Nick Clegg MP called this "a campaign to stop people losing their respect, their dignity, their independence".

The Mid Yorkshire Hospitals NHS Trust has taken steps to systematically record patients' preferred reading formats. People in the Batley area who cannot read print are being asked to notify the NHS if they need large print, audio or braille. Mid Yorkshire has worked with blind and partially sighted people to consider improvements in its IT system so they can easily identify patients that need information sent to them in a format other than standard print.
The developments in Mid Yorkshire demonstrate what's possible across the health service if only the necessary thought goes into planning services for blind and partially sighted people. To experience real change, blind and partially sighted people need hundreds more Trusts and local health services to follow the lead of Mid Yorkshire.

We will


  • Promote the Equality Act so blind and partially sighted people can get the information they need.

  • Assist blind and partially sighted people to obtain the information they are legally entitled to.



We want


  • Public services to ensure the information they provide to blind and partially sighted people complies with the Equality Act 2010.

  • Health services and local councils to eliminate discrimination by systematically recording the format blind and partially sighted people prefer to receive information in.


Daily routine


What about the information we rely on to lead our everyday lives? For example, to read our bank balance and have a clearer idea about how much we have to spend? To know when something on the supermarket shelf is near its "use-by" date for example? Having a sight problem can make even the simplest tasks painstakingly hard.

Help is often at hand but when all you want to do is catch a bus, go shopping for your evening meal, or take money out of the nearest cash machine, it is independence you crave, not the kindness of strangers.


James' story


"I am a stubborn person and extremely independent. I do not like asking people for help".
Before losing his sight James didn't think twice about everyday tasks. He now uses a magnifying glass to read. But there are times when he had no choice but to ask for help.
"I used to just do all the normal stuff. But since losing my sight it's a different story. I've had to ask total strangers to withdraw money for me. Anyone standing near the ATM. I used to ask women as I thought they were more trustworthy. The last person I asked was a cop and he told me off!"
James now benefits from the two "talking" cash machines that have been installed in Belfast City centre.
"Talking ATMs make me totally independent. I don't have to carry so much cash or go to my bank, which is seven miles away, so often."
James thinks things could improve, especially in shops.
"When I go shopping I usually use my debit card but you can't see the keypad, so you end up telling the girls working at the checkout your pin number. They weren't made for people who can't see."
James would like to scan items in the shops before buying them. He would like to get audible information on what the item is and what it contains.
"Your doctor says, 'you can't eat this, that and the other'. and then you go to the supermarket and you don't even know what's in the tin you've picked up, well that's a problem."

James Judge, 57, Belfast



More stories

"I used to love going shopping but since losing my sight it has turned into a nightmare. There are certain shops that I avoid because I can't read the tags on the clothes or because they move things around, nothing is colour coded or displayed by season and it's so difficult to see what I want".

Mita, 32, London

"Amazon isn't accessible to me and would need to change completely if I was to start using it. It's a shame as I would like to try online shopping".

Aletea, 23, Aberystwyth


"I can't see what number the bus is. I have to ask someone else or the driver. And once I'm on I have to ask someone when to get off. In London the buses have audio announcements with the number and stop. If they had that here I'd use the bus more. I've requested a big print timetable and they said they'd look into it…they're still looking."

Vaughan, 69, Sherbourne near Warwick




Some facts and figures


  • Six in ten (64 per cent) of the general public would feel "uncomfortable" if they had to rely on a neighbour to read out their bank statement. 43 per cent say they would feel "very uncomfortable" (TNS-RI Omnibus, 2010).

  • Nearly half (48 per cent) of blind or partially sighted people surveyed about banking say the main problem they have with managing their personal finances is reading written information, for example a bank statement (RNIB and Citizens Advice, 2004).

  • Three-quarters of blind and partially sighted people said that they do not feel confident taking money out of a cash machine (RNIB telephone survey, 2010).

  • Two in five (41 per cent) of people registered blind or partially sighted normally rely on buses as their main mode of travel but research highlights they experience difficulties identifying which bus to catch and reading bus timetables (Pavey, Dodgson, Douglas and Clements, 2009).
  • Over three-quarters (77 per cent) of people registered blind or partially sighted people say that shopping is one of the main reasons for leaving home but they also talk about the indignity they feel when struggling to read small price and product labels (Pavey, Dodgson, Douglas and Clements, 2009).



Change is needed


    With the number of people with sight loss set to dramatically increase in the next ten years (Minassian and Reidy, 2009), service providers must equip themselves to meet the needs of this growing section of the population. Retailers, travel companies and banks must comply with the Equality Act, ensuring blind and partially sighted people can go about their daily lives without obstruction or hindrance. This means routinely providing customer information in formats that blind and partially sighted people can read. Businesses should have the nous to go further still, seizing new opportunities in the marketplace and boosting their reputation for corporate social responsibility.



A better approach to labelling


One of the most frustrating aspects of blind and partially sighted people's daily lives is not being able to identify and label all sorts of things. It can be very testing trying to work out what's in cans and packets of food and picking out your favourite DVD or CD.
"Talking label" technology can benefit blind and partially sighted people in a number of ways. RNIB has produced devices that allow people with sight problems to record and then attach an audio label to everyday objects. Our talking tins help people label and then later identify contents of tinned food. RNIB's PenFriend is an easy-to-use pocket-sized product for producing audio labels for kitchen cupboard items like spices and condiments and for cooking and product instructions.

Major retailers are beginning to explore how they can help people with sight problems. For example Boots the chemist has trialled "talking label" technology in a number of its stores. "Talking medicines" enable pharmacists to record important information about an individual's medication and apply this on the packaging. A blind or partially sighted person can then independently play back the pre-recorded voice message at the touch of a button.

RNIB would like to see high street stores and other companies using audio labelling that helps people with sight loss carry out everyday tasks.

We will


  • Engage with retailers, travel companies and banks to develop best practice in accessible information.

  • Continue to make life easier for blind and partially sighted people by developing new products for reading information independently.


We want


  • Service providers to audit whether the information they currently provide to customers meets the needs of blind and partially sighted people.

  • Service providers to work with organisations like RNIB to identify how blind and partially sighted customers can benefit from new products they are developing.


Keeping up with the world


We read newspapers, magazines and websites to stay connected to the world, to get the latest news, to keep up to date with our hobbies or interests or to decide which new gadget to buy.
Sometimes we need to take a break from the world. To spend some "me time" curling up with the Sunday newspapers, sitting down with a coffee and the latest celebrity magazine or browsing social network websites to look at friends' photos and news.
But imagine if there were no newspapers to pick up on your way to work, no magazines to browse at the train or service station. Imagine if you couldn’t read any blogs or tweets or go online to find out what your friends or family were up to?
This might not sound like the end of the world but in a 24-hour news society, when so many of us are communicating by email and using the internet, it’s the difference between being part of or feeling isolated from the world.

Desmond's story

"I can't use the internet. I can't read a newspaper."

Desmond began to lose his sight in 1998 and believes he has lost touch with the world.
"I always used to read The Sun and the Sunday Sport. I knew what was going on and was discussing the football with my mates. But now I can’t even see the headlines. It cuts you off. So if someone comes round I make them read the paper to me.”
“There are talking newspapers? Now that would be good. I’d love to know again what’s in the newspapers because you’re finding out what’s going on. I’ll have some of that!”
He is aware that many of his friends use their computers and the internet to stay connected.
“I don’t get out as much now, I stay in the house a lot more. With a computer I could see what’s happening. You can listen to radio stations from Jamaica on the internet. But, I don’t know a thing about computers. I’m actually going to do a course because you can socialise then too.”
Desmond believes that he lives a more limited life but is optimistic about the future.
"When I was reading, I was using my imagination, learning new things. Now I just keep myself going. I hope things will be better with the computer."

Desmond Cambridge, 56, London



Richard's story


"When I lost my sight the print world completely disappeared. For me this was the most immediate and most frustrating thing."
Richard read a newspaper every day until he lost his sight aged 23. He now uses RNIB Group's National Talking Newspapers and Magazines service to carry on reading.
"Every morning the Guardian and Telegraph arrive by email. I read them using a synthetic voice on my laptop on the train to work. You can scan it by section, like sport or letters page and then by headline. If it sounds interesting, I read it. If not, I don't."

Staying in touch with the world through reading a daily newspaper is once again a routine part of Richard’s life.

"It’s just what everyone else takes for granted. But if it wasn’t for the service I’d have to trawl the newspaper websites. They're more difficult to use and I wouldn’t be able read my paper on the train.”
Richard regularly uses the internet but explains that the design of websites can make some difficult to use.
"I follow Twitter. My retired guide dog Simpson tweets (with my help)! I use Facebook to see what friends are up. I'd give it six or seven out of ten for accessibility."
Richard is keen to subscribe to some magazines from NTNM but feels that what he's really lost since losing his sight is flexibility.
"I'd like a cookery or sports magazine, possibly the Cricketer. But what I really miss is standing in a shop and just being able to choose and pick up magazines when I want to."

Richard Lane, 42, Farnham, Surrey




More stories


"I like to read magazines, mainly horse magazines. They're normally in small print, not in large print. I will read little bits at a time and then look at the pictures. I would read them more if they were in larger print."

Lucie, 15, Fleet, Hampshire


"Before I lost my sight I just read anything and everything, if there was a magazine or newspaper lying there, I'd pick it up and read it. I always bought the New Scientist – reading about the latest discoveries – that's something I really miss."

Raymond, 78, Hartlepool


"For many younger people it's not just paper-based information they rely on. It's what's online – you can keep up with friends that way. Facebook used to be very accessible in the early days, but now it's been upgraded it's definitely not as accessible as it used to be."

Aletea, 23, Aberystwyth



Some facts and figures

  • Three-quarters of the general public would be "upset" if they could no longer read newspapers and magazines (TNS-RI Omnibus, 2010).


  • Fewer than one in three (30 per cent) of blind and partially sighted people RNIB surveyed currently read a national newspaper, which is about half of the proportion who report reading a newspaper in the general population (Crosier, 2009).

  • Only one third (36 per cent) of blind and partially sighted people RNIB surveyed currently read consumer magazines, compared with around four-fifths of the general population (Crosier, 2009).

  • The cost of access technology, the lack of training and low expectations of being able to use and benefit from a computer means very few people with sight loss use one. Research shows that almost four in five (77 per cent) of people registered blind or partially sighted never use computers (Douglas, Corcoran and Pavey, 2006)



Change is needed


We spend more and more time getting our information online. Nearly every written word we read, whether on a website, in a local newsletter or glossy magazine, started life on a computer as an electronic file.
All of this electronic information can be made accessible to people who can’t read print. A website can easily be designed to work with the technology people with sight loss use on their computers. The electronic file of a newspaper can be read on a computer or printed out in larger print or braille.
Everyone who creates information, whether a publisher or web designer, can and should open up their content to people who can’t read print. Accessibility must be built in right from the start. Not only to help blind and partially sighted people keep up with the world but in some cases to comply with the law including the new Equality Act.

A better approach to newspaper and magazines

RNIB Group's National Talking Newspapers and Magazines (NTNM) provides 230 titles to anyone who has lost the ability to read the tiny print in many newspapers and magazines. It acts like a personal newsagent, posting subscribers their favourite titles, from the FT to FHM and Which? to What’s Brewing. Many subscribers receive CDs containing highlights of their chosen publication read by volunteers.
However the full version of many national newspapers can be emailed to readers. Bind and partially sighted computer and mobile phone users are reading their newspapers, using a synthetic voice or braille, before their high street newsagent has even opened.
The national newspapers routinely upload an electronic version of their print edition to a digital repository. This includes every article, comment piece and letter. NTNM receives a copy of this which they convert into an electronic copy that blind and partially sighted can use on their computer. The electronic version is very easy to search and navigate in the same way that a print version is browsed.
If the entire publishing industry followed the example set by the national newspapers, people with sight loss would have access to the same material as sighted people.

We will


  • Work with publishers and web designers so that accessibility can be built into all content from an early stage.

  • Work to make computers and mobile phones accessible so that blind and partially sighted people can take advantage of digital technologies.

  • Continue to provide newspapers and magazines read on audio CD for blind and partially sighted people who do not use a computer.


We want


  • Publishers and web designers to adopt a "design for all" approach when creating their electronic files and digital content.
  • The publishing industry to follow the example of the national newspapers by creating, storing and providing an electronic version of their work.


  • Government to take real action in ensuring blind and partially sighted people are included in its drive for digital inclusion.



Reading for pleasure


For many of us books are a constant companion, an instant retreat to another world. We can name a book that shaped our life, we keep books by our bedside or in our bags and we look forward to our holiday reading.
Can you imagine picking up a favourite book to find the print had become so tiny or blurred you could no longer read it? Can you imagine wandering along the shelves in your local bookshop or library knowing that for you, all the pages inside those brightly coloured covers might as well have been cut out?
Living with sight loss means your choice is limited to fewer than one in 20 books. This is the amount currently available in large print, audio or braille. Not being able to join in conversations about the latest book narrows your connection to the world and adds to the isolation and frustration of living with sight loss. Losing the simple pleasure of reading denies you the same enjoyment that neighbours and friends take for granted.

Sue's story


"The thought of not being able to read again was totally devastating."
Sue began to lose her sight in 2001 and was registered as blind three years later. She used to teach children to read and has been an avid reader all her life.
“The thought of not being able to read again was totally devastating. The RNIB Talking Book Service was truly a lifeline for me, especially in the early days when I was getting used to the idea of being blind. It was the first thing that made me feel that I was back in the land of the living.”
“Nothing beats the pleasure and enjoyment I get out of reading. Books fire my imagination and give me an insight into other places and people’s lives.”

“I like to read what everyone else is reading. Part of the fun of books is to chat about them with friends or to know what people on the radio or TV are talking about.”

Sue’s a real fan of RNIB’s Talking Book Service. However, she is aware that she has much less reading choice than she enjoyed before she lost her sight.
"It's so disheartening when a book you want to read isn't available in audio or when you have to wait for it so long all your sighted friends have already read it."

Sue Scott, 63, Bradford



Aletea's story


“I’m probably not as well-read as I’d like to be because not all books are accessible…”
Aletea is an English literature student and loves contemporary women’s writing. She has a limited choice of reading materials, and finds she has to stick to mainstream authors.
“I miss out in the sense that I can’t go to the library and have a good browse. Both from a study and a personal point of view, it’s just not possible. I would really like to be able to do that.”
Aletea is mainly a braille reader and enjoys using RNIB’s National Library Service. She also uses ebooks but generally feels let down that the books covering her topic of interest are so inaccessible.
“I’ve even approached publishers and said, ‘if I give you a certain amount of money, will you provide braille or audio copies?’ They said ‘no, we can’t do that’. It’s just not fair.”
Aletea is clear about what could be done to help assist her with her love of reading.
“It’s obvious really, publishers need to make their books accessible. They need to provide an electronic version, to an organisation like RNIB or to me, so we can read more."

Aletea Sellers, 23, Aberystwyth



More stories

It's hard to get books I can read so sometimes it seems easier to just sit in front of the TV. My parents used to read to me. But when you're 15 you're too old to be read to, you don’t want a bedtime story.

Lucie, 15, Fleet, Hampshire

"I'd love an ebook reader but wish more had text-to-speech. For me synthetic speech is the equivalent of reading print. It's neutral. It's the voice in your head, so you build the characters yourself."

Carly, 23, Dewsbury, Yorks


"The RNIB Talking Books library is impressive. But at the end of the day it's only a fraction of what is out there in the print world. What's really frustrating is that every print book must have been created electronically. If a blind person could have access to electronic texts it would be brilliant".

Richard, 42, Farnham, Surrey



Some facts and figures


  • Nearly eight in ten (79 per cent) members of the public say they would be "upset" if they could no longer read books (TNS-RI Omnibus, 2010).

  • Nearly half of the general public expected over 50 per cent of book titles to be available in a format that a blind or partially sighted person could read (TNS-RI Omnibus, 2010).

  • In reality fewer than one in 20 books are available in large print, audio or braille, formats the majority of blind and partially sighted people read. These books usually cost more and don’t get published until after the print version (LISU, 2004).



  • Research shows that children and young people that have choice and control over their reading will read more and increase their educational outcomes (Ryan and Deci, 2000).

  • However, in junior fiction fewer than nine per cent of titles were available in braille, only seven per cent in large or giant print, and only 6.9 per cent on standard audio cassette (LISU, 2004).



Change is needed

As the population ages, more of us will live with sight loss and struggle to read the small print in most books. People who have spent a lifetime buying and borrowing books will not be willing to choose from fewer than one in 20 books.

Although most people lose their sight later in life there are currently 25,000 children and young people living with sight loss. Many of them struggle to get enough of the books they want to read and may never go on to develop a lifelong love of reading.
Publishers must produce more large print and audio books and ensure that blind and partially sighted people of all ages can read their ebooks. Bookshops and libraries must increase their stock of large print and audio books.

A better approach to reading


RNIB's National Library Service offers 18,000 talking book titles and 25,000 braille titles, as well as an increasing number of giant print titles to our 45,000 members. Our talking book players are technically advanced but very simple to use and speak out all their functions. All but the longest books fit onto one CD. Just like a real book, you can skip forwards and backwards by chapters or sections, especially useful for cookery books for example.
RNIB has worked with the publishing industry to ensure that ‘must have’ high profile books, for example the Harry Potter titles and the Man Booker Prize books, are available in audio and braille at the same time as the print book.
There has been a massive transformation in the publishing industry with many book titles now available as ebooks. People with sight loss stand at a crossroads: ebooks have the potential to revolutionise the way blind and partially sighted people read. But so far very few have benefited.

Ebooks are usually read on an electronic device such as ebook readers, laptops or even a mobile phone. Many allow you to increase the size of the words of the book and increasingly they have a synthetic voice that reads the words out loud. However until recently few of these devices enlarged or read out the menus and other information. More devices are including these facilities but there is still a long way to go before ebooks are a good choice for most people with sight loss.

Some publishers and authors were initially concerned about allowing synthetic speech on their ebooks. The industry and RNIB, as part of the Right to Read Alliance, have worked together on a joint statement that “recommends that text to speech is routinely enabled on all ebooks across all platforms, at least where there is no audio book edition commercially available".
We are optimistic about the future as long as ebook publishers and manufacturers include blind and partially sighted people in this new chapter of reading. Apple’s products, including the iPhone and iPad, have Zoom (magnification) and VoiceOver built in from the start. This means blind and partially sighted people can confidently use all of their products and rely on them. Other manufacturers need to follow their lead.

We will


  • Continue to expand the number of titles in and increase membership of our National Library Service including our Talking Book Service.

  • Ensure that we take advantage of new technologies to deliver our books.

  • Continue to encourage publishers and organisers of other book prizes to make their high profile books available to people with sight loss.



We want


  • Government to use EU law to reduce VAT on audio books and to support a change to international copyright law for blind and partially sighted people.

  • Manufacturers, publishers and local council library services to ensure that blind and partially sighted people can use the ebooks they create or provide.

  • Local councils to help people continue reading by funding membership of RNIB's Talking Book Service and ensuring computers and catalogues within the library are accessible.



Conclusion

In this report, people have spoken about the loss of independence and the daily frustrations they face without the information they need. James and Sarah talked about the difficulty of everyday tasks such as shopping, paying bills and going to the doctor. Desmond described how not being able to read newspapers and magazines cuts him off from the world. Sue described the heartbreak she felt when she thought she would no longer read books again. The central theme for all of them is that not getting the information you want or need leaves you isolated.

Is getting the help you need to continue reading after you have lost your sight too much to ask? RNIB doesn't think so and the majority of the public agree with us.
Whether you are a government minister or councillor, chief executive of a local council or a bank, a publisher or librarian or a concerned member of the public you have a significant role to play. Through your actions you can ensure that more information is available in formats that blind and partially sighted people can read. Together we can make the difference.

End notes


  • Lost and found report, Kaye A, Royal National Institute of Blind People (RNIB), 2009

  • Network 1000: Opinions and circumstances of visually impaired people in Great Britain: report based on over 1000 interviews, Douglas G, Corcoran C, and Pavey S, Visual Impairment Centre for Teaching and Research, University of Birmingham, 2006

  • Access banned: Provision of accessible information within local authority for blind and partially sighted people, Callaghan E, RNIB (unpublished), 2010.

  • TNS-RI Omnibus survey, 6–8 August, 2010. A survey of 995 UK adults.

  • Towards an inclusive health service: a report into the availability of health information for blind and partially sighted people, Dr Foster Intelligence, 2009

  • Money matters: financial issues affecting blind and partially sighted people, RNIB and Citizens Advice, 2004
  • Two hundred RNIB Members tell us about their experience of inclusive society, telephone survey, Slade J, RNIB (unpublished), June 2010. These findings have not been weighted to the wider population of blind and partially sighted people.


  • Travel, transport and mobility of people who are blind and partially sighted in the UK, Pavey S, Dodgson A, Douglas G and Clements B, Visual Impairment Centre for Teaching and Research (VICTAR), University of Birmingham, 2009

  • Future sight loss UK (2): an epidemiological and economic model for sight loss in the decade 2010-2020, Minassian D and Reidy A, RNIB, 2009

  • What is the experience of blind and partially sighted people in reading newspapers and magazines? Crosier A, telephone survey with 250 people for RNIB, 2009. These findings have not been weighted to the wider population of blind and partially sighted people.

  • Availability of Accessible Publications, Lockyer S, Creaser C and Davies J Eric, Library and Information Statistics Unit (LISU), Loughborough University, November 2004

  • Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being, Ryan R and Deci E, American Psychologist, 55, 68–78, 2000

Is getting the help you need to continue reading after you have lost your sight too much to ask?

RNIB doesn't think so and the majority of the public agree with us.
This report reveals the emotional and practical impact of no longer being able to read print and the isolation, loss and frustration felt.

To find out more about what RNIB is doing and what we want others to do visit rnib.org.uk/lost


This publication is also available in braille and on audio CD.

Royal National Institute of Blind People (RNIB)

105 Judd Street

London

WC1H 9NE
RNIB Helpline 0303 123 9999


© RNIB October 2010

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