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This paper presents documented experience from Sweden concerning the need of so called easy-to-read literature, and personal reading support which has enabled these groups to establish lasting reading habits. The model described is in it's most central parts as follows:
Finally this paper gives examples of how the local library can work within the model, and what new possibilities the model provides to groups of people who until now have been unable to take their part in society because of their reading disabilities.
These difficulties are due to different reasons. Lack of knowledge of the Swedish language and cultural differences are some reasons why many immigrants suffer from reading difficulties. Many of these people could be able to overcome their reading problems but never do as a result of diminishing educational resources.
There are however other groups who have greater and more permanent difficulties when it comes to reading and comprehending ordinary written texts. They are persons suffering from afasia, dementia and intellectual and mental disabilities.This group is estimated to contain 7-8 percent of the Swedish population. To make reading possible in these groups, one has to adapt the written language and the content of the written material, so it can be easily read and comprehended.
For some time now, Sweden has been publishing so called easy-to-read literature(ER literature) and current news. The operation has been inititated by the Swedish Government and is governmentally funded with 13 million Swedish Kronor per year ( 1.7 mill. US Dollars ).
Centrum för Lättläst (The Easy-to-Read Foundation) in Stockholm is responsible for publishing most of this material, which is steadily increasing in volume.
Over a year The ER Foundation publishes approximately 30 different titles and a weekly news edition, which also has monthly supplements.The foundation also has a revision service which rewrites and publishes information from governmental and local authorities.
Courses in how to write in esy-to-read form are also given by the Foundation.
There are many different groups of people who need ER texts, but the main target group for ER-literature in Sweden are persons with intellectual disabilities. When producing books and magazines, the editors take special consideration to these people. A group with different needs.
For example, the newspaper weekly, 8 SIDOR ("8 PAGES") is produced for persons with a minor intellectual disability. The books published, vary in difficulty, from very easily written literature which contains only pictures, to the more demanding edited versions of classical literature which gives the reader a relatively difficult reading experience with very few illustrations.
Although persons with intellectual disabilities are the main target group for the operation, the ER books and the newspaper "8 PAGES" are very often used in Swedish schools for younger children. Here they are used to stimulate reading interest with children suffering from reading defficencies. We have had some difficulty in reaching those groups of readers that the publishing service is mainly intended to help.
I shall present a model which is supposed to give persons with intellectual disabilities access to the publications described above. This model has been proved successful even in other target groups.
When initiating the project we were aware of the fact that very few persons with intellectual disabilities visited libraries in Sweden. We also knew that libraries during the eighties in many cases made ambitious attempts to inform about the ER publications.
There were in most Swedish regions, and still are, librarians who are personally responsible for giving service to persons with disabilities. At this time librarians visited homes for adult persons with intellectual disabilities and showed them ER books.They talked about the books and read for them.
If the aim was to get more persons with intellectual disabilities to the libraries, the result was meagre. Even if the target group showed interest during the visit, they were still unable to read themselves or go to the local library on their own. They were completely dependent on support from their personnel. And the personnel themselves showed almost no interest at all regarding the matter.
The librarians were disappointed but their efforts had nevertheless shown the important role both personnel and other supportive persons play. The experiences made by the libraries indicated that passivity of personnel was indeed the one main obstacle between persons with intellectual disabilities and reading.
Our reading project confirmed experiences made by many of the libraries during the eighties: It is not sufficient, merely informing about the books. You need a staff that is commited.
The goal of the project was, once again, to engage persons with intellectual disabilities in reading both books and news. In the project we tried a few different ways to:
The last item, Reading Representatives was by far the most effective way to reach the goal.
This attitude of the staff members was apparently a remnant from times passed when persons with intellectual disabilities should be protected and given care in closed societies and where the only task for the staff was to give physical care.
Modern professional education given to those working within the health and care services almost never deals with the aspect of the need for information or reading for those who are to be their clients. This, in spite of the fact that persons with intellectual disibilities have legal rights to full participation in society. In this way archaic prejudices are kept alive.
A day devoted to education on the need to read, and ER-literature was a part of the project. And here we learned that it was not enough to create any further activity from the staff when it came to reading aloud or visiting the library. Old habits are hard to break and reading aloud had not been a priority when planning the weekly routine.
Apparently a special person was needed with sole responsibility to arrange reading hours. In each staff, at least one, preferably two persons were given the main responsibility for the reading. They were called Reading Representatives.
Within the project we produced study material including four pamphlets for the further education of Reading Representatives. They were members of the staff in the homes and day centers where adult persons with intellectual disabilities lived and worked. The deeper studies were implemented as an adult education programme i.e study circles, of four to five meetings.
Within the programme the Reading Representatives are able to consider their own reading habits and compare them with their clients. The participants in the programme also learn to adapt a text to fit an intellectual disabilitiy and how to organise reading hours.
The reactions from those attending the study programmes have in general been very positive. Many of the Reading Representatives describe how they now can view their work and their clients in a new way.The reading has created moments of affinity and new topics of conversation once shyness and uneasiness has passed.
After completing a programme every Reading Representative receives a framed diploma wich is handed over at a small ceremony. The diploma has apparently had a significant value, since they are often put up on the wall where everyone can see them, at their work places."Now, the others may see that I have the right to sit down and read"
The task of the Reading Representatives has been, after a completed programme, to arrange reading hours, individually or in groups, at least once a week at the homes or at the day center. The Reading Representatives are also in charge of visits to the library which occur at least once a month.
Finally the Reading Representatives have one more important task, which is to inform and inspire his or her fellow staff members. This can be done by giving infomation on ER books and other ER material at staff meetings or by engaging more colleagues in the reading hours themselves.
The reading project has resulted in Reading Representatives.
Since then we have educated a large number of Reading Representatives in Sweden. Today they are 1.400.
The system of Reading Representatives has been tried among persons with physical disabilities as well as among persons suffering from dementia. It is obvious that the model works excellently even for these groups, who as much as persons with intellectual disabilities need ER and reading support.
To realise the operation there are few more ingredients in our model.
To give sufficient support to the operation we have established close cooperation among four parties:
Cooperation begins at county level, in a workgroup which has to anchor the idea of Reading Representatives with politicians and the heads of the social and cultural services in the various regions of the county. Each larger region with a Reading Representative forms a working group in which the four different parties work together. This regional working group's joint task is to form the operation with a Reading Representative and provide continued support to the Representative to ensure that reading activity is firmly established.
The regional group arranges certain days for staff members, study circles for the Representatives and cultural activities for persons with intellectual disabilities. The group shall also see that Reading Representatives get to meet on a regular basis and are provided with suggestions on what to read. The groups have often been engaged in trying to improve the environment in the libraries and the services given to persons with intellectual disabilitites.
The four parties participate in the work group as individual entities with an individual responisibility in the operation of Reading Representatives:
The cooperation of all these four parties is necessary. The cooperation is also valuable since it generates both energy and joy based on the solutions and ideas given from the different points of veiws and experiences. This cooperation is also found on a national level.
Furthermore, we have to take one more ingredient into consideration, and that is TIME! The working groups on regional and county level must look on their task in a long term perspective. Further cooperation will be necessary as many persons should be influenced and new habits take time to be established. Especially when it comes to persons with intellectual disabilities.
During the build-up period of 2-3 years, a person employed within the project forms regional working teams in a county. The employee is financed by governmental funding. Otherwise no extra funding is needed. Those employed within the project have often been recruited from the FUB. The ER Foundation has set up two offices to organise the Reading Representatives. They coordinate and support the operation in the counties. The main responsibility for the Reading Represantatives is locally based.
Experiences made by Reading Representatives and working groups are presented in the magazine Läsombudet (The Reading Representative) which is distributed by The ER Foundation every second month.
In Sweden between 1994 and 1998 we have built an organisation with 600 active members in working groups and 1400 Reading Representatives in about half of the counties in Sweden. The project is now working in five counties and in one major city. Several other counties are ready to start.
In time the organisation which includes Reading Representatives could be included in a cultural network which would work at giving all persons with disabilities access to every kind of cultural event.
The libraries can supplement these days by inviting individual family homes and day centers to visit the library for a guided tour, some book talk and reading aloud. After this everyone gets a library card.
In the study circle for the Reading Representatives there is, of course, included further information about the local library's resources and a guided tour, lead by the librarian.
Many libraries have been inspired to arrange specific cultural events for persons with intellectual disabilities; such as litterary cafés or courses in creative writing. Once in a while the library has been kept open at special hours when ordinarily closed, for instance on Saturday afternoons.
By far the largest and also most fun venture has been what some libraries have done when they have created specific corners or departments with ER material. When this has been the case the libraries have formed a group including some of their readers who in turn have been able to come up with ideas of their own on how to arrange this corner.
Together with the librarian they have decided on decorative colouring and furniture. Bookshelves and other interiors have sometimes been supplied by the day centers. Newspapers and other material which is made available in the ER corner has been chosen by the discussion groups. Fairly often the ER corner has been equipped with a computer and specially adapted programmes.
When the corner is finished, which it can be with fairly small means, an opening party can be held. The new reading corner can be a boost both for the libarian as well as for the target group in need of ER material, with which the librarian now has close contact with, a brand new group of enthusiastic borrowers.
But - the inner work of the library is also important. All staff must get to know how to give adequate service to persons with intellectual disabilities. Many need knowledge about disabilities to overcome fear and prejudices. Certain days devoted to the issue on intellectual disabilities can be an enormously important step in venturing reading for persons with intellecutal disabilities.
The local work groups possess a great deal of knowledge about these kinds of disabilities. Their knowledge can be transferred to library staff and by the representative from FUB or from personnel in homes or day centers.
The library plays an important role in giving support to Reading Representatives. At least twice a year Reading Representatives need to gather in the local library for tips on new ER titles and other material from the library.
To work via intermediators with adult persons is a new role for the library. Education in book talk can be an important venture for everyone who comes in contact with Reading Representatives and book borrowers with intellectual disabilities.
" One man had been very unwilling to communicate closely with others. He doesn't speak, and uses a few signs which he combines with sounds. At our first reading I think he showed up mostly for the coffee. As soon as his cup was empty he left and went for the door and started banging on it . I encouraged him to stop because he was bothering the others. If he wanted to stay he had to be quiet. He chose to stay and keeps coming everytime.
On the first twenty occasions he stood as far away from me as possible, but he gradually came closer. Now he sits at the table and takes part the full hour. His development has gone from being irritable when I tried to show him a picture, to now, when he himslef looks for pictures, and picks them out of books and magazines."
"We read the ER newspaper "8 PAGES" every day at our day center. The most popular part of the paper is the crossword puzzle which we always solve individually so that everyone can hand in their own answers. When we're through we put the answers in an envelope, write the address, put on a stamp and we all go together with our letters to the mailbox.
The first question asked when the new paper arrives is always: