Web Posted on: August 24, 1998

INTERCHANGE:

International friendship-links for adults with intellectual disability

John R Hegarty
Computer Applications to Special Education (C.A.S.E.) Unit Psychology Department
Keele University
Keele
Staffordshire
ST5 5BG, UK
tel: +44 1782 583386, fax: +44 1782 583387
email: psa02@keele.ac.uk

1. Summary

Adults with intellectual disability (mental retardation) frequently do not have many friends outside their immediate day-service or residence, although many express an interest in other people, and in travel. This can because of limitations in communication, lack of opportunity, or a shortage of money.

However, new communications and information technologies may create an opportunity for overcoming these limitations. For example, access to personal computers (and hence, to the Internet, and a range of software applications which reduce communication barriers) is increasingly available to many persons with disabilities.

The INTERCHANGE project aims to develop a model for establishing and supporting friendships between individuals and establishments within and across nations using traditional and modern telecommunications media such as Fax and the Internet). Three preliminary studies are described in this paper.

Results have been encouraging and show that individuals with intellectual disabilities have strong interest in others and wish to share experiences with them – even to visit. The INTERCHANGE project is continuing by recording how friendship-links develop, with a view firstly to producing a model for other centres in different countries to follow, and secondly to encouraging an international network of linked centres and individuals.

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2. Introduction

A consistent thread in service-development for persons with intellectual disability (mental retardation) across many nations in recent years has been the implementation of strategies to promote greater inclusion of such persons in ordinary community living, rather than in segregated, institutionalised provision. This is most clearly seen when large institutions are closed down and their residents moved to ordinary houses in community neighbourhoods: what are frequently called, "ordinary-life settings".

Research studies on the consequences of including individuals in ordinary-life settings show, however, that their lifestyle is not always as full as they might have hoped. Whilst material living conditions improve, and whilst greater access to community services frequently occurs with staff support, individuals may not form many social contacts with the wider community. Indeed, it is possible that individuals’ social network is more restricted than it had been formerly, when they lived in larger, albeit segregated, communities. Perhaps new ways need to be found which might help people with learning disabilities to make friends with others.

There appears to be little research on how people with intellectual disabilities form friendships, or conversely, why they may have few friends when they live in ordinary housing. Logically, friendships can only develop when there is interpersonal contact. Two persons must meet one another, and gain something from the contact, which they enjoy to the extent that they want to meet each other again. This need not be physical contact, since people can become pen pals, communicating by conventional letters, or now, by electronic mail. In most persons with intellectual disability, the desire to be social, to form social relationships and to have friends is not in doubt – so what are the obstacles to friendship formation, and could new computer and communications technologies assist?

Barriers to friendship formation by people with intellectual disability may be created by not having many opportunities to meet others, and by deficits in spoken and written communication skills. With the rapid growth in telecommunications media, together with new kinds of communication aids (such as computer software which allows people to write messages in symbols rather than words) the possibility presents itself that these could be harnessed to assist people to come into contact with one another (even in other countries), discover common interests, and encourage the development of friendships. This is why the INTERCHANGE project at Keele University began.

The INTERCHANGE project began in 1995. It arose out of discussions about how the interest of Keele University’s "Computer Applications to Special Education" unit in using computer technology to help people with intellectual disability could embrace the aims of the European Union’s TIDE 1995 initiative which aspired to generate cross-national collaboration in telematics (in other words, blending telecommunications and computer technology). Previous CASE projects (see Hegarty and Whittaker, 1993 for a review) had considered the development of computer software for encouraging cognitive skills, for helping with everyday decision-making (such as what to buy during the weekly shopping trip to the supermarket), and for encouraging independent eating. Was it possible that computers could also help individuals to make friends?

Between 1995 and 1998 a series of pilot projects has been run in order to see what difficulties would arise in attempting to link persons with intellectual disability with others who were geographically distant, for example by electronic mail, in the hope that "pen-pal" links might develop. If a structure for this could be established then it could be the beginning of a way for carers and advocates to assist such persons routinely to make friends with others, relatively easily and at little cost after the initial purchase of the necessary hardware and software applications. This paper summarizes three pilot projects conducted to date.

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3. Three studies on facilitating contacts

3.1 Study One: Email for students with severe learning difficulties.

When the INTERCHANGE project was being planned, it was not clear whether people with severe intellectual disability would be able to make use of electronic mail, even with help. Heather Rennie, a teacher at a school for children with severe learning difficulties in Nottingham, UK therefore worked with children at her school to see if they appreciated that computers could be used to pass messages. Explaining it to two of her students (two female students aged 15 years) as a new game, she encouraged them to leave messages for each other on a computer, giving help with typing and reading where necessary. The study lasted over a week. 16 messages were exchanged, containing 34 discrete statements. The messages were analysed for content. It was clear that the students had no difficulty in establishing and continuing a dialogue with only a small input from the teacher. Participants were able, therefore, to establish a correspondence by computer and exchanged meaningful messages. They were able to establish common ground in their conversation and had no practical difficulty in dealing with the fact that messages could be composed and stored on one computer and then retrieved and read on another.

Encouraged by these results, Heather Rennie then responded to a request for email pen pals by a teacher in Texas, USA who worked with children of a similar ability level and age. Three students, aged 12 – 15 years old, participated in this project in Ms Rennie’s school. The project lasted 10 months during which messages were exchanged between the two schools. Results were encouraging and showed that children were able to continue a dialogue with their pen pals. Areas of shared interest developed and students had a genuine interest in their pen pals, looking forward to messages. It appeared that they fully appreciated that their friends were far away, and they understood in principle the idea of electronic mail.

The study showed that, in a supported environment, students with severe learning difficulties can correspond with others through email and that to do so is a meaningful and valued activity for them.

The second study was designed to partly replicate Study One with a group of adults in a day service for people with intellectual disability and to extend it by looking at the role of the World Wide Web in facilitating international links.

3.2. STUDY 2: A friendship link between centres in England and Greece for adults with intellectual disability.

The second study aimed to see how interested a group of adults with moderate to severe intellectual disability would be in establishing links with people in another country. The participating Centres were the Kidsgrove Day Service, Stoke on Trent, UK and O Agios Spyridon Centre for people with special needs in Iraklio, Crete, Greece. Over a period of one year, adults who expressed an interest in making contact with people in another country at the two centres met with a staff member and took part in activities and discussions about the other Centre and about making contact with service-users there. Both Centres also designed World Wide Web home pages, although the Centre in Kidsgrove did not have Internet access on site.

Experience showed that service-users in both centres were very interested in making contact with other people, especially in another country. They had many suggestions about what people in the other Centre might find interesting to learn about their own lifestyle. As a first step, parcels containing information about individuals in each centre and about the local neighbourhood were exchanged. These contained videos of life in their centre, photographs of participants, some personal presents, items of local interest, and recipes for local dishes.

However, an unexpected problem arose. On the receipt of parcels, at both Centres, both staff members and service-users were disappointed at the contents. Items considered personally meaningful by the senders were not understood by recipients. As one example, party-hats (carnival hats) popular and traditional at important festival in Greece were not understood at all in England, where they were considered something trivial to send. Similarly a recipe for "Staffordshire Oatcakes" (the making of these was also included in a video) which are imbued with almost religious significance in the Staffordshire Potteries and are unique to that small area, were considered in Greece to be strange and insignificant.

It had been thought that creating World Wide Web sites at both Centres would aid communication. However, this was again disappointing in practice. Low transfer speeds for the predominantly picture-based Kidsgrove site led to Greek users finding the Kidsgrove site of little interest, whilst the text of the Greek site (in English!) was professionally relevant, but of little interest to service-users. However, they did find the pictures interesting, especially when the author was able to explain them.

These findings were important and suggested that both Centres had underestimated the cultural gap between them. In attempting to send tangible objects (which would bridge the language barrier), the cultural and personal meanings invested in them had been insufficiently communicated. Some additional way of sharing lifestyles would be needed in future.

3.3 Study 3: Assisting clients to play a more active role in initiating exchanges with a day-service in another country

This study, which is ongoing, was started because it was clear from experiences at both Centres that staff members were taking the lead. Although service-users in both countries have expressed keen interest in learning about people at the other Centre and in sharing their own lifestyle with them, their role was largely passive. Two initiatives were therefore launched, initially at the Kidsgrove day-service in the UK (these have yet to be tried at O Agios Spyridon).

The first of these was a systematic study of how far five service-users were able to use a mouse or touch-sensitive VDU to access Web pages using the Netscape Web browser software. If individuals could not access another Centre’s Web-site successfully, and learn something from it, then this way of finding out about another Centre would be impossible. A series of tasks were given to participants to find out how easy it was for them to use Netscape with either a standard mouse, or a touch-sensitive VDU screen. A series of changes was also made to the Kidsgrove web-site in line with service-users comments and preferences.

Results showed that certain modifications made to access (using the touch screen was easier for clients than the mouse) and to Web-site design enabled service-users to use Netscape more independently.

The second initiative was to empower service users to have more responsibility for managing the contact between Kidsgrove and the Greek centre. The role of support staff would be to assist service users in decision-making and be less controlling. The immediate effect of this change was a marked increase in interest in Kidsgrove for making contact with the Greek centre, especially about the idea of making a visit in the future.

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4. Discussion and conclusions

The aim of the INTERCHANGE project was to create friendship-links for persons with intellectual disability in geographically distant places (in the same country, or overseas) and it was expected that new communications and information technologies would have a central part to play in this. This paper has described three preliminary studies that have considered the feasibility of the INTERCHANGE idea. Experience gained with the participants in these studies suggests that children and adults with intellectual disability, when offered the opportunity, actively welcome the idea of becoming friends with people in other countries. They appreciate that modern communications technologies, such as fax and email, can enable them to get in touch with other people, and they have a willingness to extend their skills. However, difficulties have arisen in the exchanges of gifts, which suggests the greater complexity of developing friendship-relationships between countries than was initially thought. Greater support and training for individuals to take more responsibility for accessing the Internet and for contacting others appears necessary.

The idea of using the Internet to make contacts with others who have disabilities is not new. Indeed the Chatback Trust co-ordinates email contact between schools, especially for children with physical disabilities. However, this project is aimed at supporting adults with mild to severe intellectual disability, and to link those in different countries. As noted earlier, this client group may have few friends, despite a willingness to meet others and learn about them. Members of this client group frequently have attained only a low level of literacy, which makes written communication difficult. There is an additional language barrier when a shared language does not exist. Nevertheless, with the introduction of new software (such as Writing with Symbols – Detheridge, 1993), new computer technology (such as screen-reading software suitable for Web pages), and communications enhancements (such as faster Web access for pictures) it is increasingly possible to rely less on the written word for communicating with others and more on non-verbal, pictures or symbols.

It is hoped that the presence of the INTERCHANGE project will encourage those supporting individuals with learning disability in the various countries to see the possibility of forming international friendship links and to develop them using the new technologies.

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Literature References

Detheridge, M. (1993) The Contribution of IT to Working with Symbols. In Symbols in Practice. aspects of the use of symbols in learning. Coventry: National Council for Educational Technology.

Hegarty, J.R. (Ed.) (1991) Into the 1990s: The present and future of microcomputers for people with learning difficulties. Market Drayton: Change Publications

Hegarty, J.R. and Whittaker, M. (1993) Computers for people with severe learning disabilities. International Journal of Computers in Adult Education and Training, 3, (1), 41-51.

Holloway, T. (1994) Chatback is for kids. Easi IT and Disabilities Journal, 1, (3). Available on the Internet: gopher@sjuvm.stjohns.edu//EASI/8/6)

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Acknowledgements

Heather Rennie, Yiota Efstathiou, Vikki Jensen and Evelin Zafiropoulou for work done for their Keele University dissertations. Tom Knapper, staff and service users at Kidsgrove Day Service. Georgos Gigourtakis, staff and service users at O Agios Spyridon Centre. Marios Sevrisarianos, principal psychologist at the Mitos Institute for Integration, Iraklio, Crete for his continued support and encouragement. Stephen Bostock, Director of the Centre for IT, Keele University for advice on the Internet.

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