Learning disabilities: Books that let the pictures tell the story

Specialist publishing company Books Beyond Words tells stories in pictures that help adults with learning disabilities make sense of what for them is often a bewildering and frightening world.

Books Beyond Words fills a yawning gap in the market for adults who can’t read. Many people with learning disabilities struggle with written and spoken words and these books have been specially created to tell stories in pictures to help with the understanding of such situations as going to the doctor, feeling cross, making friends, falling in love and speaking up.

They are tools that break down communication barriers and help people with learning disabilities explore their lives and, just as importantly, their emotions.

It was founded 25 years ago by Baroness Sheila Hollins, a professor of psychiatry at St George’s, University of London, when she hit upon the idea of drawing a strip cartoon to help her son, who had a learning disability, understand an upcoming family holiday.

At the time there was nothing available to help adults with learning disabilities cope with their feelings, so Baroness Hollins decided to put picture books together herself and publish them with the help of a group of people with learning disabilities, a consultant psychiatrist and an illustrator.

The first two titles, When Mum Died and When Dad Died, first published in 1989 are still going strong today, and are now in their 4th edition. Topics covered include a range of medical conditions, relationships good and harmful, life challenges and, most recently, the actor Hugh Grant helped create and write The Drama Group. This title is not only a story about the ups and downs of amateur dramatics, but also contains ideas for role plays and how to get a drama group started.

Books Beyond Words support people such as Amanda Cresswell, who lives in west London. She helped to develop the book 'Getting on with Cancer' and as a result of this she now feels confident to ask the correct questions and to make decisions about treatment. She says: “This book helped save my life.”

Clive Pressinger too enjoyed helping produce Feeling Cross and Sorting it Out. He says: “I've enjoyed looking through the pictures...it's helped me feel a lot calmer.”

Some 43 titles are now in print – each title has up to now averaged a print run of about 2,000 --and in 2011 Books Beyond Words became a not-for-profit social enterprise. Baroness Hollins says: “We wanted to explore different ways of using the books and get them into many more people’s hands – not just professionals.”

Creative consultation

The way the books are created has always relied on significant input from potential readers. Baroness Hollins explains: “Each book takes about 18 months, and involves people with learning disabilities from start to finish. Dozens of people will have trialled the pictures before we make the final changes to the pictures and the story.”

All the books use full colour illustrations rather than photos throughout. Baroness Hollins says: “I tried using photos first to create a story, but the readers saw the people as real people and couldn't use their imagination in the way that they do with full colour drawings. Black-and white-drawings didn't work either, as they are much more difficult to share feelings and continuity of character.”

There’s a useful guide to the storyline at the end of each title for support workers and carers, as well as helpful hints as to how to read the stories, for those who want a ready-made story. Baroness Hollins is keen to stress, however, that everyone has their own interpretation of the pictures and encouraging this can give support workers valuable insights into what the readers know about the world, how they perceive it and what they are feeling.

Citing Sonya’s Feeling Sad, a story that explains depression, as a particularly good example, Baroness Hollins says: “One reader thought the story was about a young woman whose baby was taken away from her which enabled her to share her own sadness that she didn't think she would ever have a baby, another person used the story to share his own feelings when his mother had another baby and he felt left out. Many other readers have told of their sadness in watching a sibling achieve new things and how they feel left behind and forgotten.”

As well as books, Books Beyond Words also offers workshops and training for support workers and carers and can assist in starting up bookclubs for interested learning disability groups.

Future expansion

Baroness Hollins is determined to grow Books Beyond Words and make them widely available. She says: “We intend to increase our range of titles and the training we offer, and also encourage good practice for all who work with, support, or care for people with learning disabilities. In the words of Dr Dominic Slowie, national clinical director for learning disability, NHS England, 'We need to create a bit of a revolution.' He was speaking about using our books and distributing them widely across the world. In other words we would like to be seen as the benchmark for good communication, empowering people through pictures.”

Currently Books Beyond Words is creating eBook versions of its back catalogue and hopes to have everything digitized by the end of 2015. Titles are also being translated into a range of languages, including French, German, Italian and Russian, which can now be purchased online as eBooks. As Baroness Hollins says: “We hope to expand our translated range over the next few years so we can reach people with learning disabilities on a global scale, as well as UK-based communities where English is a second language.”

The next big project on the horizon for Books Beyond Words is an app for iOS, Android and a web-browser version, which should be ready by mid-2015. This will be a streamlined access point for the stories. In a nutshell, people will be able to search via keywords, or scenarios to access a 'story' or 'scene', which will be a sequence of pictures communicating everything from having an injection to going into prison.

This will be a real step forward as regards the accessibility of the books, allowing people to view the stories from a single device.

Books Beyond Words titles are all available online at www.booksbeyondwords.co.uk/bookshop Paperbacks, eBooks and training can also be purchased through the website. For trade orders, contact distributor Pavilion at http://www.pavpub.com/