Introducing the Project
The project focused on accessing and understanding the role of spirituality in the lives of people who have profound learning disabilities with high support needs (the term ‘high support needs’ signifies people who have a profound learning disability which includes high support needs and communication difficulties that present major challenges to getting one’s views and preferences heard and understood).
Theologians such as Stanley Hauerwas and Jean Vanier have written extensively on the spirituality of people with profound learning disabilities and the ways in which Christian communities can become places of spiritual growth, acceptance and well-being. However, to date there has been no empirical work done exploring the spirituality of people with profound learning disabilities and the role of such communities in facilitating spiritual well-being. The current study will address this gap in our knowledge by exploring the spirituality of people with profound and complex learning disabilities as they live out their lives in relation to various forms of Christian community. It is expected that the results and strategies that emerge from the study will have wider application than any single faith tradition. The project began in June 2008.
The intention of the project is to find out more about the spiritual lives and needs of people with profound learning disabilities who have limited or no verbal language with which to communicate. We are finding other ways to communicate.
The project is using an approach drawn from Person Centred Planning known as MAPS (making an action plan) which was developed initially by teachers in special needs schools who identified the importance of friendships and circles of friends in the sustenance and support of the children in their care. They have based their entire work on the assumption that all people belong, all can learn, we are better off together and diversity is one of our most critical strengths. It is a very inclusive process. We have borrowed the idea of a circle of friends and the use of the tools which facilitate the production of a plan. Our project focuses specifically on the spiritual lives and needs of the individuals with whom we are working.
The first thing we do is get the circle of friends together. The wider the circle the more likely it is that the picture reflects nuances and details of the person's life. We need the support of the “inner circle” for this and it is usually the family. The meetings move through a series of questions which help us tell the person’s story, identify her dreams (and nightmares) and paint a picture that allows a plan of action to emerge. At this first stage it can be quite basic and often there is already a great deal going on which sustains and enriches the person’s spiritual journey. We then ask the family to keep a diary so that this plan and MAP can be supplemented, if you like fleshed out a bit, and so that specific changes can be made if they are required. We use, what’s known as, action research as our research mode. This means that we find out what’s going on, agree any actions and then monitor them – all as part of the research model.
We are doing this research with various families and organisations across the country. We are finding that each group process is different. What is common to all is the willingness and the interest that families and friends have shown in this process. Our spiritual lives are so central to our being and our relationships that we feel this kind of approach should become much more widespread. If you would like to know more about this research please do contact me.
The project has now been concluded and the results are currently being writen up.