British Journal of Learning Disabilities Vol. 25 (1997) . 73

Life Story Work for People with Learning Disabilities

Feryad Hussain was an Assistant Psychologist at the time this article was written working with Roman Raczka, a Chartered Clinical Psychologist. Both were working with the Riverside Mental Health Trust in the Services for

People with Learning Disabilities.

The transition from long-stay hospitals to community residential homes is a difficult period for many people with learning disabilities. Whilst staff ensure a ’clinical transition’ by forwarding details of the client’s history, there is little information from the clients themselves to ensure an ’emotional transition’. This paper examines ways in which Life Story Work can ameliorate transi- tion stress for clients. The main issues for clients during this time are those of adjustment to the new environ- ment as well as being given the opportunity to deal with the loss and bereavement of their previous lifestyle. It is suggested that we need to look at the clients’ needs at this time from a psychological, as well as a practical viewpoint. Life Story Work is a person-centred approach which enables both staff and clients to focus on par- ticular aspects of their lives. In addition, it allows an opportunity for relevant counselling at a time when staff support and understanding are vital.

Introduction This paper suggests the use of Life Story Work as a

means of easing the transition for people when mov- ing from long-stay hospitals into community residential homes. It aims to show that carrying out Life Story Work will enable people to not only cope with present changes, but also deal with the loss of their old life and the people in it. This is achieved by the process of Life Story Work which allows the person to focus on issues that concern them on a psychological and practical level.

Change is often understood to be a very challenging time, be it a change of house, job or friends. Whilst it poses exciting new experiences, it can also be a harrow- ing and stressful time. In addition to adjusting to coping with old losses, there lies the challenge of seeking and deciding upon new opportunities. Many residents moving from long-stay hospitals to community residential homes find themselves facing not only a change of home, but also changes in their social and cultural environment so that they have to cope with a vast range of new experi- ences as well as the loss of those that are familiar.

Whilst the intention of the 1990 NHS and Community Care Act was to help people to live as independently as possible, its implementation meant that carers faced a demand for new services to deal with issues raised as a direct result of such changes. (References to carer/staff

throughout the article refer to those providing support for people with learning disabilities.)

People with learning disabilities, like all of us, bring their pasts with them in their memories, attitudes and relationships. These, in turn, influence their ability to become independent and function autonomously within a community setting. During resettlement from long-stay institutions into the community, the relevance of the link between the client’s past and present can often be over- looked. Resettlement procedures are dominated by various professionals submitting clinical reports on the person’s background. Whilst the passing on of medical and clini- cally relevant information is invaluable in facilitating a ’clinical transition’ for the client, there is little informa- tion from the client themselves to facilitate a ’personal emotional transition’, i.e. information from the person which gives us a sense of who they are, their (non- clinical) life experiences and their feelings and thoughts about these. And yet, the clients’ perception of their own needs is an invaluable, yet all too often rare, source of information.

In response to attempting to achieve this ‘emotional transition’ as well as trying to address the issues around dealing with change, it seems appropriate to examine more closely the link between the person’s past and present experience. This would help us improve our understand- ing of the way in which the people themselves perceive everyday eventshteractions around them. Life Story Work with people with learning disabilities is one way of helping us address this issue.

What is Life Story Work? In essence Life Story Work involves gathering a variety

of information on all aspects of the person’s life, from per- sonal experiences, feelings and thoughts on life changes, families, relationships, to more factual information on birthdays, schools, homes lived in, etc. The intention here is not specifically to present a complete life-story of the client, but to highlight certain aspects of their lives, thus improving our understanding of the way in which they perceive everyday events /interactions.

The need for Life Story Work within our client group led us to research and write up a complete Life Story Pack. The Life Story Pack consists of a number of sections titled according to various aspects of the person’s life,

74 . British Journal of Learning Disabilities Vol. 25 (1997)

such as Family, Relationships, Education, Long-Stay Hospitals, Community Homes, Leisure Activities, etc. Each section is further sub-divided into categories within that area, for example, the section entitled Long- Stay Hospitals would be made up of the following cate- gories: Hospital, Ward/s, Daily Activities. The questions under each section involve thinking about relationships, special friendships, dominant features, i.e. colour, shapes, sizes and smells within those. The main focus is on how people with learning disabilities experience their environ- ment.

Each section is supplemented by addition recom- mendations to staff in the form of considerations and suggestions to facilitate implementation for the client and carer. The questions in each area should be used as a framework for the carer, that is, guidelines from which to obtain more information. Question areas should be flexible enough to follow the client’s interest, not the staffs’. It is important to note, as Ryan & Walker (1995: 7) state: ’There is no blueprint for Life Story Work, the person with learning disabilities is the key.’ The end product of Life Story Work will not necessarily result in a book; it could simply be a ’collection box’ of items which include photos, sketched objects (symbolic or real), which reflect the individual’s life experience. When examined more closely, such information gives people a sense of their client’s personal history. It is important to remember that since the emphasis is on clients, the end product must be something personalised and, therefore, valuable to them.

Having described the process of Life Story Work, it is now appropriate to look at some of its implications. Essentially, Life Story Work allows the person (often for the first time) to come into contact with their feelings and thoughts around their life experiences. Life Story Work enables people to accept past events and losses as well as moving towards building a more certain future for themselves.

Our literature review and examination of existing Life Story Projects, strongly suggests that both people with learning disabilities and carers find this an empowering experience. Whilst it allows people time to acknowledge difficult periods in their lives, the focus is largely positive. Life Story Work provides a structured framework which empowers the client, enabling them to deal with their losses and make changes around events such as resettle- ment and various new events.

Background Life Story Work was originally used with children who

were adopted/fostered. Since these children had grown up in ever-changing circumstances, that is different fami- lies, homes and locations, their past was easily lost or forgotten. Life Story Work was used to give back their past to them, allowing them to develop ’historically accurate’ information about their individual background. This procedure was effective in achieving its goal and was used with children and adults in a variety of settings. This approach may be viewed as a form of reminiscence therapy (though if used as such, should certainly not be seen as a replacement for other more relevant therapeutic input). Potts & Fido (1991) in their work with people with learning disabilities who had lived most of their

lives in a psychiatric institution, illustrated how reflec- tion on life events and memories enables people to ’learn to value their own history and become increasingly confident and determined that the public should know what life has been like for them’ (p. 12). Atkinson & Williams (1990) emphasise this point clearly in their work, using what they describe as the ’life histories‘ approach. Their work makes an important contribution to giving people with learning disabilities ’a voice’, and raises our awareness of the experience of people with learning disabilities from differing backgrounds and cultures. Organisations such as the British Association for Adoption and Fostering, and Age Concern have used this approach and have found it to be effective in affirming people’s sense of identity (Ryan & Walker, 1995). However, in addition to its therapeutic value, Life Story Work can stand in its own right as a valuable opportunity for people with learning disabilities to make sense of individual experience and look back on their lives.

People with learning disabilities encounter various changes in terms of different residents/patients/staff, wards/homes, etc. The purpose of Life Story Work is to build up a picture of the person’s life so that they can go on to make informed choices and decisions about their present and future lives. This aspect of self-advocacy is central to the principle of normalisation which, in itself, is the foundation and guiding principle of work with people who have learning disabilities. It is, however, important to acknowledge that people with learning dis- abilities may still ’need help to exercise these rights and to recognise and undertake their responsibilities’ (Potts & Fido, 1991: 138).

Whilst there are a variety of personal reasons for doing Life Story Work with people who have learning dis- abilities, there are two main objectives:

to enable the person to develop a sense of present- day security where previously life events were too unstable to achieve this; to enable the person to develop a sense of identity by talking (in a safe environment) about their ideas, thoughts and feelings about life.

Life Story Work is also helpful in enabling the person to deal with sadness experienced in response to personal loss. This sadness is a result of a change of rules/roles and separation from familiar people and settings. The way in which carrying out Life Story Work helps to deal with loss can be explained in relation to Worden’s bereave- ment model (Worden, 1982). Worden suggests that grief about bereavement and loss involves four tasks of mourning. They are:

to accept the reality of the loss; to experience the pain of grief; to adjust to an environment in which the person (or in this case the people they feel are familiar and close to them) is/are missing; to withdraw emotional energy and reinvest it in another relationship.

Life Story Work involves enabling the person to acknow- ledge and accept the loss brought about by change. The process itself helps the person to think about how changes have made them feel. Additionally, the work focuses on

British Journal of Learning Disabilities Vol. 25 (1997) + 75

helping people make new choices and friendships within their current environment. Some of the outcomes of Life Story Work mirror the four tasks of mourning thus allowing clients not only to grieve for the loss, but also to cope with their current lifestyles in a positive and productive manner.

Issues of Implementation There are many implications of using Life Story Work

with people with learning disabilities. Perhaps one of the greatest benefits of Life Story Work is the fact that it adopts a person-centred approach where the client decides on what to include/exclude. Here, people with a learning disability will be the main source of informa- tion as well as being fully involved in the process. It is hoped that the activity itself will help the person with learning disabiltty increase confidence and independence, for in this situation they, rather than the staff, are the experts. Staff are given an opportunity to see residents as people with valuable life experiences and not simply people with learning disabilities who are to be looked after and/or treated. The process should lead to improved relationships between staff and residents.

Below are set out a number of recommendations made when using the Life Story Pack which are designed to help anyone carrying out Life Story Work.

There is no specific order in which Life Story Work should be carried out. Usually, the person works initi- ally with their present situation, beginning with more familiar experiences rather than beginning straight- away with the past. Initially, the keyworker should spend time talking to the person, first discussing the relevant issues involved in doing Life Story Work. This is alsoa good time to establish facts which can avoid complications later on. Ensure that whilst questions cover many areas, they include ’closed’ ones as open-ended ques- tions may seem too abstract and complicated for some people. (Typically, closed questions either pro- vide fixed choices - ‘do you like to go out in the evening or do you prefer to stay at home?’ - or they require a ‘yes‘ or ’no’ response.) The questions posed should be flexible enough to be used with clients of differing verbal ability. Whilst this is a valuable exercise, it can be hard work too. It is, therefore, important to only do a little at a time. Let the client set their own pace. Where a person cannot write/spell without help, ask them to dictate to you what they wish to say and then, where possible, let them copy it. Find out about and make use of all available resources. It is important, out of respect for your client, to think carefully about what is appropriate to put into their Life Story Work. Remember, this is the client’s life story and the role of staff is only to facilitate the person’s recall. It is important to remain neutral and not pre-judge cer- tain experiences as negative, for example, leaving hospital/hospital memories. Some people have extremely positive memories of long-stay hospitals.

bolic objects. The media used should be used in addition to the existing communication system so as to best help the person express their feelings. Atkinson & Williams (1990) in their anthology, Know Me As I Am, illustrate wonderfully the diversity of work produced by people with learning disabilities, including use of prose, poetry and art to tell us of their stories. People with a learning disability can also draw their own family trees and maps (Walmsley, 1995). Where possible, staff should consider the option of making a visit with the client to their homes (family and community), day centres and work places. This may well bring back important memories.

An important issue is how Life Story Work can be used with clients who are non-verbal. One option is based around use of Makaton signing and symbols. Other options include the use of art, music and drama therapy techniques. These approaches all offer various forms of communication which encourage the person to use imagery, symbolism and environment as well as their own bodies to translate their feelings about past life experiences in non-verbal ways.

When implementing Life Story Work there are a num- ber of considerations to be made. The consequences of doing Life Story Work may well extend beyond the actual exercise and may bring up many unresolved issues for the client. Staff support is crucial in helping the client through this period. Whilst not all the infor- mation divulged will be appropriate to present in the Life Story Work, staff should support and reassure the person at all times. This includes redirecting people through the relevant channels for specific psychological intervention if needed. Also, some clients may find difficulty stimulating past memories because of their age or the sensitive nature of events. It is, therefore, impor- tant to allow the client to set the pace of each exercise.

Conclusion The use of Life Story Work for clients with learning

disabilities allows people the time and opportunity to deal with some of the personal and emotional issues associated with a history of change and loss. It is effec- tive in enabling the person to focus on areas which may have been overlooked in the past. This, in itself, raises many important issues which, as illustrated, have a variety of practical/emotional implications.

In essence, Life Story Work encourages people with learning disabilities to build relationships not only with staff but with other people who live and work in their immediate environment and community. This is turn, can promote a shared understanding of how and why people present with certain attitudes and behaviours and become an educative process for the person facilitating the Life Story Project. Whilst the Life Story exercise will not necessarily leave the client with an end product such as a book or video, the process itself should be an educa- tive and liberating process for all participants.

To conclude, the use of Life Story Work with people with learning disabilities, especially those people moving from long-stay hospitals into the community, is effective in enabline the Derson to focus on areas which mav have

Whilst carrying out this work, clients may use a variety of media when exploring each area, ranging from videos, photos, letters, maps, drawings, and both real and sym-

been overrookeh in the past and, indeed, the preient. It promotes the person’s personal/social history, bringing it to the forefront of everyone’s attention. This can empower

76 British Journal of Learning Disabilities Vol. 25 (1997)

the person with learning disabilities to take direct respon- sibility for remembering, reflecting and discussing their life history thus validating their experiences and enhanc- ing relationships between staff and people with learning disabilities.

Correspondence All correspondence should be directed to F. Hussain,

c/o The Research Team, Main Admin Block, Springfield University Hospital, 61 Glenbumie Road, London SW17 7DJ.

Acknowledgements The authors would like to acknowledge the help of

Francis Harvey, Clinical Psychologist for Maidstone Priority Care NHS Trust and Vikki Grant, Residential Support Worker for Yarrow Housing, London. We would also like to thank two anonymous referees for their encouraging and constructive comments on a previous draft of this article.

References

Atkinson, D. and Williams, F. (1990) Know Me As 1 Am. London: Hodder and Stoughton.

Potts, M. and Fido, R. (1991) A Fit Person to be Removed. Plymouth Northcote House.

Ryan, T. and Walker, R. (1995) Life Story Work. British Agencies for Adoption and Fostering.

Worden, J. W. (1982) Grief CounseZZing and Grief Therapy. Springer: USA.

Walmsley, J. (1995) Life history interviews with people with learning disabilities. Journal of Oral History, Spring, 71-6.

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