Heidi Cortner Boiesen
IBBY Documentation Centre of Books for Disabled Young People
In 1985, Nina Askvig Reidarson launched the IBBY Documentation Centre of Books for Disabled Young People in Norway, her home country. The Centre was an extension of two international collaborative projects that had begun in the early 1980’s between IBBY and the Norwegian Institute for Special Education. Both projects were under the direction of Tordis Ørjasæter, a Norwegian author, Professor of Literature and also the mother of a disabled child, but they would not have been possible without the enthusiastic support of the former IBBY Executive Director, Leena Maissen. This collaboration resulted in two UNESCO-sponsored leaflets about disabled children and reading called: “The Role of Children’s Books in Integrating Handicapped Children into Everyday Life” (1981) and “Books for Language-retarded Children” (1985).
The aims of the IBBY Documentation Centre of Books for Disabled Young People are to promote research, production, mediation and the use of books especially designed for disabled young people. The Centre provides information, consultation and documentation services to young people with disabilities, to their families and to relevant support organisations, but also to teachers and students, research workers, librarians, publishers, authors, illustrators, policy makers and the media. The Documentation Centre works with external users in reviewing books and material and is open to anyone who is interested in their work.
The Centre’s comprehensive collection of books relating to young people with special needs is maintained and expanded with the help of the individuals and publishers that make up IBBY’s international network. The current stock consists of about 4000 titles.
Most importantly, the Centre receives assistance from IBBY National Sections through projects like the "Outstanding Books for Young People with Disabilities" (1999 and 2001). This is a compilation of what are identified as the most notable books for disabled children published in their countries. As in the past, the upcoming selection is scheduled to be launched as a travelling exhibition at the 2005 Bologna Children's Bookfair. Previous exhibitions have been displayed at national and international conferences, book fairs and/or exhibitions. When evaluating and selecting books, a strong emphasis is put on their potential use as tools for special education but also on their quality, both as forms of leisure for children and as examples of national culture.
Until August 2002, the IBBY Documentation Centre of Books for Disabled Young People was a subdivision of the Institute for Special Education at the University of Oslo. The Documentation Centre was then transferred to the Haug School and Resource Centre. This is a municipal school for 110 disabled young people with autism, multiple handicaps or learning disabilities. At the same time, it runs a resource centre for parents and carers, kindergartens and schools. In all, the library consists of over 10.000 titles – picture books, fiction and non-fiction.
I have been head librarian at this school for 11 years, after having been a regular children’s librarian for over 20 years. The first encounter I had with the disabled students came one morning when a small girl that seemed only about 8 or 10 was wheeled into the library. She looked very frail and could only really communicate with me through her eyes. The assistant accompanying her asked me if I could find suitable books for her, and then added, “Mary is 18 years old and she likes stories about strong and brave girls!” Clearly this young girl enjoyed stories about things that she would never experience herself, but that did not stop her from getting a thrill out of books - a sense of fun and adventure. For example, I know she liked Pippi Longstocking, and I have a sneaking suspicion that she would have enjoyed Hermione Granger.
One of my greatest ambitions and aspirations has always been to bring children the key to all the wonderful adventures found in books. However, not every child gets the chance to experience these wonders. To quote an unknown poet, "The greatest thing in the world is the alphabet, as all wisdom is contained therein – except the understanding of putting the words together." In Norway with all our wealth and endless opportunities, between 20 and 30 % of our population still have difficulties reading and understanding a simple text. 10 % need specially adapted literature. 2 % of our population is unable to see or process written information. This last figure includes the groups of disabled or chronically ill people who because of their ailments are unable to read. While their material needs and rights have improved, their cultural needs and rights have been sadly neglected.
As Tordis Ørjasæter so aptly put it: “Every child and every young person has a right to enjoy life with books, even those who cannot read or who have great problems with speaking. Picture books can help stimulate language development, help identification and the process of socialisation. They can diminish loneliness and give artistic and cultural experiences and joy. “
The UN’s standard rules about equal opportunities (codified in 1993) set out a strong ethical and political responsibility from each individual country to include persons with disabilities into society and to guarantee that they can participate in cultural activities on a par with others. Young people with disabilities are of course as different from one another as anybody else in terms of intellectual power, age, experiences or interests. The nature and impact of impairments vary, as does the ability to cope with them. It’s a novel thought among some politicians that persons with mental disabilities can enjoy and actually benefit from books. It is commonly "accepted" that they love music, or like sports, etc. The ability to enjoy books and reading uses skills that are generally assumed to be entirely lacking in mentally impaired people.
Young people with disabilities need specially adapted books because their disability prevents them from reading. Traditionally, only visually impaired children had books produced especially for them. Children with speaking or reading difficulties seldom found books produced for their needs. Today we know that different disabilities require different types of adapted books, and these books ought to be of the same artistic quality and diversity as children’s books in general.
Children who are born blind build their language and their mental picture of the world primarily by means of the audible and tactile senses, which must be relied upon to gain the meaning of words and concepts. Because we live in a visual world where language usually is based on codes relating to visual experiences, many blind children have insufficient understanding of the meaning of the words and concepts they listen to and learn to use. But most young children with visual loss have some degree of sight, and it is important to know whether a child with visual impairment is able to read large print and pictures, or to what extent he or she needs alternative media based on sound and tactility, (e.g. Braille or raised print), tactile pictures (raised pictures), books-on-tape, or books with sound (audible) illustrations.
A tactile picture book can give children with visual impairments the opportunity to enjoy picture books. These books stimulate the sense of touch and the art of recognising and interpreting shapes, thus preparing them for learning Braille later on. Tactile picture books can help develop language provided the illustrations are comprehensible to the blind child. We know that conventional realistic pictures, even if they are in raised print, can be difficult to interpret for children without visual experience. Some tactile picture books have small non-figurative or geometrical shapes and characters. (Virgina Allen Jensen, Philip Newth.) Contrary to conventional pictures, these figures need no visual experience in order to be understood. To allow the book to be read by blind and sighted children together, the Braille text should be written beneath the standard print, and its placement should not interfere with the tactile illustrations. A cloth book is another kind of tactile book that can provide a different experience to that of paper picture books, and which can be enjoyed by all children. Such books can encourage children with mental disabilities or multiple handicaps to play with the tactile elements and thus take an interest in books. Unfortunately tactile books are very expensive, as most of them need to be handmade.
Children with no hearing difficulties develop language by playing with words; they make up their own words, they recite nursery rhymes and jingles. Deaf children on the other hand, use their eyes instead of their ears to receive information. Unlike hearing children, they do not develop speech spontaneously. Difficulties in imitating the spoken word and in associating written symbols with sounds complicate communication and make it difficult to pick up a good knowledge of the written and spoken language. Consequently, deaf children often lack adequate reading skills. These children use visual language symbols, mainly through sign language, rather than hearing as their principal means of communication and as their educational language.
In terms of books available to these children, first there are books where sign language is reproduced. This has the added benefit of potentially inspiring non-deaf children to play with signs and thereby pave the way for communication between them and their deaf friends. Signed video versions of regular children's books stimulate signing and language in general and give deaf children access to popular books told in their first language. A video is a suitable medium for visualising the various elements of sign language, but it is not necessarily the best instrument for conveying fiction, particularly for younger children, and the use of videos ideally should not be used instead of bilingual printed books with sign language illustrations alongside standard text. Such books are suitable also for children with language difficulties who use sign supported language and of course, for children with no hearing difficulties.
Children with mental disabilities find many words and basic concepts difficult to use, to understand, and not least, to read. Some have a deficiency in their visual perception ability, making it difficult to discriminate between shapes and complicating picture reading and letter recognition skills. Their selective attention is often limited: they often focus on details, not being able to filter out unimportant items, hence making it hard to grasp the central idea being conveyed by pictures and text. In addition, a short memory span and attention deficit makes it difficult for them to understand the sequence of events in a story. Delayed intellectual development limits abstract thinking and consequently, the ability to comprehend texts and pictures representing phenomena that the reader is unfamiliar with. Through reading or being read to, words and concepts will be picked up, thus helping the child pick up the language and make it its own, and finding a personal way of expressing itself, which is fundamental to developing a personality.
Some children need a guide to participate in the wonderful adventures that are hidden in books. The guidance consists of finding the right book to awaken the child’s interest and inclination to read. For poor readers books-on-tape is a good approach, but they can never replace the closeness and contact between two people, which occurs through reading to someone. Your own voice and close presence is so much more valuable than the distant voice on a recorded book. When you read to a child you must be willing to spend time which must never be a sacrifice. Many thoughts and reflections arise from incidents in the books, and many conversations can result when children learn how to put their thoughts into words. Through books, parents can get to know their children better. It creates a neutral situation for communication about values and attitudes. This is no different for young people with disabilities.
Some non-speaking young people use books with Bliss symbols or pictograms to communicate. Bliss symbols are international non-verbal pictorial symbols. Young people with mental disabilities sometimes use these systems as well, occasionally combined with signing, single words or simple illustrations. “Der kleine Lalu” is a Swiss picture book with Bliss symbols added to the standard text. By telling the story through large, colourful and expressive pictures combined with a regular text and Bliss symbols, this book takes a multiple approach and can reach readers with different needs and skills.
Several writers and photographers have made books that portray disabled children with sensitivity and insight. Such books can tell the story and show illustrations of a disabled child as the main character without stressing the fact that the child is impaired. Susan in Jeanne Willis and Tony Ross’ book “Susan laughs”, is just a girl who plays and acts like other children – until we reach the last page and notice that she’s actually in a wheelchair. This girl is different, but also similar to other children. In Nan Gregory and Ron Lightburn’s “How Smudge Came”, the main storyline is seen from a disabled person's point of view. The fact that Cindy has Down Syndrome is again never mentioned in the text.
Specially adapted books for disabled young people can include fiction with a simple text and a simple story, non-fiction books or leaflets with clear photographs such as information about the society we live in, newspapers, books and non-book materials. However, the layout of the printed text has to obey certain rules about size, boldness, etc. Aesthetic qualities may in some cases have to give way to readability. The books need to be richly illustrated, which usually means that the production costs are high, and from the most publishers’ point of view not a worthy investment considering the relatively limited demand.
Experiences from library services for mentally disabled people show that they can derive great pleasure from books. Like the rest of us who are “temporarily well functioning”, - to quote a girl who was confined to a wheelchair after a traffic accident - they use books for many reasons, but especially take pleasure, joy and excitement from them.
Many mentally disabled persons learn to read as young adults or even later. Illustrations in books designed for young adults should reflect their audience’s own experiences and background, (e.g. familiar objects and situations). The overall central feature must be an age-relevant topic appealing to the curiosity, feelings and interests of the reader. It’s important to treat the reader with respect and try to avoid books that are geared towards or depicting toddlers and their activities when dealing with a teenager, even though his or her mental capacity may be that of a three-year-old.
I know a mentally disabled man who is about fifty years old. His favourite reading matter is technical magazines and books with colourful pictures of cars and motorcycles. He cannot read, but books have always been central in his life – he still fondly remembers the songs of his childhood; rhymes and jingles stimulate his sense of rhythm and the awareness of his own body; pictures stimulate recognition and comprehension, and he feels close to other people who are deeply absorbed in their books.
To many children, the world is a chaotic place. Reading doesn’t solve this entirely, but in their books they can meet other young people with similar problems. The reader creates his or her own inner space and is less exposed to the various changes in the ‘real world’. Reading can make a child feel less lonely and can provide real help to get through his/her problems. Reading fiction will feed the imagination. My favourite author, Astrid Lindgren said the following: "Nothing can fully replace the book as the fertile soil for imagination. Films, radio, television – are all experiences on the outer level. A book creates personal images in the secret rooms of the soul." The Swedish author Sven Wernström said, “Give the children living materials [to read]! Give them newspapers – new and exciting every day. Give them fiction that shows humanity in all its unpredictable wealth and variation and the language in all its expressiveness. Fiction is not only the best, but also the only way to acquire language and insight. Pour books over the children!” My own teacher in library school, the former IBBY Vice-President Jo Tenfjord, put it like this: “Children ought to be marinated in books!”
Some libraries have hired reading ombudsmen for persons with disabilities or traumas. The reading ombudsman – often someone employed in a group home – is committed to read to his ward on a regular basis. One young man wanted to hear a book about a boy who had lost his dog over and over again. This young man was autistic and had no spoken language. He often had violent outbursts where he shouted and threw things. It transpired that he had recently lost his grandfather, but had not been allowed to say goodbye or come to the funeral. Through reading the story about the grieving boy, he was able to come to terms with the loss of a loved one. Like a small child, he wanted to hear that special story repeated, and he wanted to keep listening to it until he got some kind of closure.
The term ‘reading therapist’ is a new one. However, the thought behind it isn’t – in fact, it was the Greek philosopher Plato who probably first discovered the therapeutic effect storytelling had on children. As I understand, in the USA the use of this kind of therapy is quite widespread in psychiatric hospitals. Immigrant and fugitive children write down their stories, which are then read aloud and discussed among a larger group. In literature therapy the subconscious is working through the reading of adventure tales. Folk tales and mythology can be used to help express uncomfortable thoughts and feelings. Hansel and Gretel, for example, always fascinates children who have had a difficult background. However, it is important that the stories have a happy ending in order to instil hope and trust.
The British writer John Duffy is convinced that literature is improving the quality of life for people who suffer from various kinds of depressions. One well-known Norwegian actor grew up in a poor neighbourhood surrounded by violence and chaos. He was a timid and lonely child. Then a friend introduced him to the public library, which opened up a whole new world to him. "When you read, you are no longer alone," he says. Reading gave him inner serenity and security, a space for reflection and a spiritual maturity. In my opinion, the same applies to reading to young people with mental disabilities.
At our school, the students use the library freely. It’s a place where they find books for pleasure or to help in their assignments; it’s also a place where nothing is expected from them except to behave with consideration for others. The children can just relax with books or while stories are being read to them. They learn that books need not necessarily mean that they have to accomplish anything. Often they will make comments that are not related to the stories they hear. Perhaps the story has sparked off a thought or an association of ideas – the overall effect is communication and the use of language. The "interruption" is in fact reaction and participation – part of the teaching and learning process.
My personal experience as a librarian, as a mother, and as a fellow human being tells me that what is good for children in general – such as good children's books – becomes even more important when it comes to disabled children. Books and cultural experiences strengthen what is already healthy and provide opportunities for closeness between disabled children and well-functioning people, between those who receive care and those who give it.
To conclude this talk I will tell you about Troy and Monica; two young students in a small group of multiple handicapped students. They all have speech difficulties and use pictograms or poorly expressed sign supported language. These problems made co-action and play complicated, as most communication had to go through the teachers. In order to talk or play with one another it is necessary to understand each other’s way of talking. By learning a story by heart, the children achieved a common experience, and when one knows the lines the other person is trying to say, it’s not necessary to actually understand the words. They learnt to relate to each other more and started to look upon each other as potential partners in play and conversation.
Their favourite books are the stories about Alphie Atkins (Alfons Åberg) by Swedish author Gunilla Bergström. Their teachers read the story about Alphie not wanting to go to sleep over and over again. After this, they showed the story on panels several times until the students knew the story by heart, and then the students, directed by their teacher, used their dolls to play the parts of Alphie and Daddy. Finally, the students started playing the roles themselves. According to the teacher, they have now all learnt new concepts and expressions and are interacting more successfully with their fellow students and even with strangers.
Astrid Lindgren once wrote a "prayer" that goes something like this:
Oh, mighty fairies! Give my child as a christening gift
Not only beauty and health and wealth and
All the other things you usually bring.
Grant my child a thirst for reading,
I beg of you with all my heart!
Because I wish my child to hold in her hand
The key to a wonderland, where one may fetch
The fairest of all joys –
In a similar vein is a poem by a Norwegian writer that depicts disabled people as “our little siblings” who enter this difficult world with less “hand-luggage” than the rest of us. As the poem describes, when the last boat is about to depart, it will be easier for them because all they have to carry is a heart full of sorrow or joy.
Ladies and gentlemen, let us continue to work together to show them the way to this wonderland of thrills and happiness by giving them the key to the enchanted world of books!
Speech given at the IBBY World Congress in Cape Town, South Africa 2004